Year 1-4

• Sunday, December 16, 2012 10:26 PM, EST

  It’s a vicious cycle 2 weeks no food will stay down, then food stays down liver swells and food takes forever to process, lots of gas, discomfort as food goes thru the system, entire left side feels straight up swollen, aching all the way up to shoulder, a little bit of itching on the arm and legs. Full stomach equals Heidi sleep all day, rolled out of bed due to a cell phone call needless to say that cell phone has been put to silent. Got up and at 10 went to the flea market, spent $11 bucks on big ass Hummer for the Gi Joes & Barbies, and Allen Iverson 1:6 scale Action Figure. I think my nephew was more intrigued with the purchase, boy his eyes got big when I walked back over to the food truck with a toy truck that was almost bigger than he was.
  
  Getting ready to spend my free time putting my creativity to work, um yeah Tonya this means you too. Too some advice from another cousin to actually display all the dolls that I and mom purchased over the years, many of those purchased by her and I had no idea. Inventorying the dolls I realized many if not all were purchased after I went off to college 1996 to 1998. The last weekend I was home I inventoried the dolls to see what and all I had. I pulled the Christmas and Disney ones to display on top of the kitchen cabinets in our garage. Between me and Carrie we should be able to come with some creative storage solutions to display the dolls while also making a section that the kids can play with. I am not your normal collector keep them in the box and look at them…yeah right…Now I will admit some are going to stay in the box the one’s my mom bought, but I have a lot out of the box that I have found over the years mostly at the flea market and dirty cheap on the internet with the little money I set aside for entertainment/escape from reality. Basically what I am is a Playscale Miniaturist, and you would not believe how many people fall in this category and believe or not the majority is MEN. I have a mixture of Barbie friend’s mainly new heads and those with the fashionate body which are the pose able dolls, I then pop the head off the dolls I want and put them on the new body. The rest of the dolls are action figures like Hasbro Gi Joes, all with unique faces. My vision or retirement plans is to build my own 1:6 scale road, if I ever win the lottery there will be a 1:6 scale train around my childhood home, a caboose house.
  
  I have some many ideas swirling around in my overactive brain which has been on the fritz in recent months as my body feels run down. I can already tell how the week or so off is going to go, get up attempt to eat, then sleep, eat then sleep. My body is beyond not happy it wants sleep but it can’t handle lying down for even 8 hours. The hope that some rest will help out is gone, I feel even worse than when I was working on limited hours of sleep. Muscles are aching, feels like a knot in my lungs. I thought I would make it thru the weekend without upchucking, I was wrong. It make me wonder if a lot of activity equates to upchucking being cleaning the last two hours I stop and then get nauseated…ugh…now trying to get the taste of stomach acid out of the back of my throat. Tuesday will have to be my last day for work till after Christmas, I have to call the GI clinic Monday to get an appointment; I also have a Rheum appointment on Wednesday. Hopefully I will feel good that day so Carrie and I can go see the Hobbit in 3d.
  
  Not sure what my plans are for Christmas all depends on how the body feels, I am not in the mood to come down with walking pneumonia again.  And I am really tired of upchucking especially stomach acid.
  
  
  

• Friday, December 14, 2012 7:54 PM, EST

  So frustrating damn if u do damned if you don't.  Was able to eat an entire meal that stayed down the downside is my liver is now swollen..ugh.....I see my Rheumatoligist on the 19th, got to call GI Clinic on Monday, my ONC sent a referral over.....all to find out what is up with the liver...and as another cancer patient said NED isn't all that glorious..  I actually have slept for the most part thru the night, but don't feel rested, I had to use the hand rails to climb the stairs this morning.  My legs feeling heavy, my throat and mouth dry as cotton.  Cold weather isn't helping as the bones and fingers are stiffen.
  
  Now the question is how long will it take the body to process and will the intestines be in pain or will the toilet get overloaded again...lol  Carrie knows what I am talking about.
  
  Finally got some shelves in my room and I am going to start to set up my diorama's and dolls/action figures.  Finally putting my creative skills to work, tomorrow a trip to the Flea market to see if I can get any deals for my displays and get my exercise for the day. 
  
  
  

• Thursday, December 13, 2012 10:22 PM, EST

  Eduactional Piece

  "Sjögren's syndrome is a chronic autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. As a result, a person with this condition usually experiences dry eyes and a dry mouth. Sjögren's syndrome also may cause dryness of the skin or vagina, and may affect other organs, such as the lungs, kidneys, gastrointestinal tract or nervous system. Patients may suffer from joint pain or fatigue". http://www.ucsfhealth.org/conditions/sjogrens_syndrome/index.html
  
  Currently I have dry mouth, eyes, love to walking pneumonia, fatigue, joint pain and it looks like gastrointestinal since I have earned a trip to the GI Clinic.
  
  Fatigue is one of the most prevalent and disabling symptoms of Sjögren’s syndrome. Here are some tips that can help you cope with the problem:
  
  Work with your doctor to find a specific cause and treatment for your fatigue. The possibilities may include systemic inflammation, poor sleep, fibromyalgia, depression, hypothyroidism, muscle inflammation or side-effects of medications.
  
  Know your limits and pace yourself. Plan to do no more than one activity on your bad days. Try to do more on your good days, but don’t overdo it!
  
  http://reasonablywell-julia.blogspot.com/2011/08/sjogrens-syndrome-foundation-patient.html
  
  
  Listen to your body and plan to take a 20-minute time-out every few hours to help you get through your day.
  
  Educate your friends and family about what you are going through and how the fatigue in Sjögren’s syndrome can come and go.
  
  Develop a support system to help you with tasks. Ask friends and family members to be prepared to do one or two chores for you on your fatigue days. Give them specific instructions in advance and be reasonable with your expectations.
  
  Get at least eight hours of sleep every night. If you wake up at night, plan extra time for sleep.
  
  Get your body moving every day! This may help not only your fatigue but also your chronic pain, poor sleep and depression. Start with five minutes of aerobic exercise daily (e.g. walking, biking, running, elliptical, treadmill) and increase the duration by an additional two-to-three minutes each month up to a maximum of 25 minutes daily.
  
   If you have a heart or lung condition, consult your doctor first.
  
  If you are still employed, ask your employer for accommodations because you have a medical condition. Try to work from home if possible to gain more flexibility with your work routine.
  
  Identify the major stressors in your life and work with a mental health professional or your support system to minimize their impact.
  
  http://paughs50.blogspot.com/2012/10/2011-sjogrens-clinical-presentation.html
  
  Pulmonary symptoms
  
  Patients with Sjögren syndrome can develop dryness of the tracheobronchial mucosa (xerotrachea), which can manifest as a dry cough.[33] Less often, patients develop dyspnea from an interstitial lung disease that is typically mild.[33, 34] Patients may develop recurrent bronchitis or even pneumonitis (infectious or noninfectious).
  
  Gastrointestinal symptoms
  
  Dryness of the pharynx and esophagus frequently leads to difficulty with swallowing (deglutition), in which case patients usually describe food becoming stuck in the upper throat.[33]
  
  Lack of saliva may lead to impaired clearance of acid and may result in gastroesophageal reflux and esophagitis.
  
  Abdominal pain and diarrhea can occur. Rarely, patients develop acute or chronic pancreatitis, as well as malabsorption due to pancreatic insufficiency. However, caution is advised when interpreting laboratory results because an elevated amylase level may arise from the parotid gland.
  
  In patients with gastritis, Helicobacter pylori infection should be sought because of its association with gastric mucosa-associated lymphoid tissue lymphomas.[35]
  
  Patients with Sjögren syndrome are at increased risk for delayed gastric emptying, which can cause early satiety, upper abdominal discomfort, nausea, and vomiting.[36]
  
  
  

• Wednesday, December 12, 2012 10:37 PM, EST

  STOP- My goal is not to piss any one off but some family members continually barge my sister with calls and text after reading some of my posts even AFTER I ask you NOT To, she doesn’t have any more information that has not been put her on this board or my Facebook. I understand and appreciate that u care about how I am doing and that is why you are reading the post, but some of you are hypochondriacs and somehow read things out of context or think by calling my sister you’re going to get more info…you’re not…..I am not in a mood to have a similar episode when a certain member of the family freaked the rest of the family out because I shut my IM off on Facebook, and caused an up roar and a lot of undue stress….It has been over 30 years and its not a secret that I like to spend quiet time with me, myself and where I and not think about anything and recharge.
  
  Before reading any farther I will make this statement AGAIN PLEASE DO NOT text or call my sister, #1 She can’t TELL U ANYTHING because she gets 99% of her information from this same POST, and since she is asleep she will not read it until tomorrow afternoon….#2 She is opening meaning u will still be in bed when she is at work and some of you over react and cause UNDUE stress….So CHILL THE HELL OUT and stop reading into things or hope that by calling my sister you will somehow gain some insight YOUR NOT!!! because she more than likely hasn’t read it and she doesn’t need any more stress……#3 I have no problem walking up stairs tonight and deleting text and calling u out on it ……if you really really really have an question you can email me at rollerskate13@yahoo.com and I will answer eventually
  
  So much running thru the mind and finding an escape is eluding you, at times there are brief reprieves which never last long enough. An hour east and west your body is no longer tense until a reminder of your life, sometimes an hour sometimes less, keeping busy exploring or just enjoying the moment. As you approach closer back your body tenses up especially as D day approaches, what will the future hold. Looking at the numbers the guess is the end is near 2016 or far 2026 but looking at the numbers 2016 is more likely, when the 1st passed in 1996, the 2nd in 2006, and you are the 3rd, but will it be ovarian that takes it out or the breast? Every day that passes woman dx with you, before you, after you have gone on many leaving children something u may never get to do, even though you’re GYN is making less than subtle suggestions. Longing for a Christmas break the need for escape has never been so dire, but an escape where? To the mountains or to the sea which will bring what is needed, remaining still is an option indeed but stress will be close at hand. Hobbies are a must, to dive into an escape within the realm of imagination, but what about human interaction? One’s past is littered with little interaction, looking back you spent many a day entrenched in your imaginary world but yet there was only one there. The one who knew you weren’t sick but let you get away with skipping always, but sadly that person has gone to the other side.
  It isn’t fair living a life always looking over one’s shoulder waiting for the proverbial other shoe to fall. Is it wrong to wish for a relapse in hopes that the Chemo will end the pain and bring back some normalcy?
  
  Other’s long for your prolonged break, it gives many hopes but at what cost, the treatment to get you there was a breeze unlike what many go thru, but there was a price for that breeze. Doctors see you as a guinea pig, a pharmacist seeing how much one’s body can take before succumbing to the effects. The long time effects on a young adult cancer patient is still unknown all that the doctors can agree upon is to treat the young more aggressively. Why one must ask, in the hopes of putting it out of its misery, while the treatment plan for older is more palliative since in minds of medical and many others they have lived more of a life. But let’s be real both young and old face a similar fate although their journeys do defer the are sisters, mothers, aunts, grandmothers, friends, and daughters, whether they live short, medium or long lives the still face a unknown battle. One that tragically doesn’t have a happy ending, many suffer thru days many surrounding by those who don’t understand the realities there loved one’s face.
  
  Your body longs for rest which doesn’t not come, sleep is what your body craves, but the bed is no friend of yours. The mind tries but does not succeed, relaxation does not work, exhausting one’s self not good nor does it work. One day of long sleep has a chain reaction affect resulting in various pain as you sit at 5am pain radiates from behind and around your port? Blood Clot? Nerves? No one knows. Should I try to sleep or just start one’s day which is harder and harder as the day’s pass by, pulling oneself out of bed, I see the gears spinning in your minds…depression coming from your lips…so sorry to squash your dx, depression it’s not…reality it is…..a time to reassess one’s life…as my ONC asked what are you doing for you? The question of the age what is best, a suggestion that disability may be the answer to the medical mountain…when one looks at the finances to see hours of overtime….for what to pay bills that pile every trip to the mail box.
  Dreams left unfilled, the only connection is with those on the screen, scattered across every corner of the world. This is one’s only connection to those who understand some by not all, no two are alike. Quality of life that is what a Stage IV Cancer patient life boils down too, standing in line at the pharmacy getting your prescriptions filled, wondering if those filling your pills think you’re an addict….the look when they are checking to see if they have enough of your pain pills to fill…..the looks as you pull out 5 to 6 bottles of pills twice a day….yep that is life………………………….
  
  It is funny the goals u set, in the beginning it was hanging on to see the completion of the Harry Potter Movies, then to visit Harry Potter world. Now it is to finish reading certain series of books, then there movies, it is funny how life is now segmented in 3 months sections. Sadly my eyes have not been cooperating as of late, hoping to once again resume reading my books that occupy the locker in the corner. I may have to end up getting some books to listen too on my IPOD, not as good as reading since reading allows me to improve my vocabulary and help with the dreaded Chemo brain.
  
  Now we wait to get into yet another clinic back once again to the GI Department, to figure out why food will not stay down, causing a cascading effect, burning in mouth, sores, acid flowing up the throat, and in the end no food equals no fuel for energy. No fuel for energy means a significant decrease in what one can do; my time sheet will tell the tale. My November timesheet looks worse than when I was on Chemo. Eat a healthy portion and expect to see it come back up within an hour then wake up on an empty stomach and because its winter u wake up coughing which triggers um yeah throwing up mucus that drained from ur sinus to your empty stomach…..nothing like throwing up stomach acid first thing in the morning. Looks like I am going to have to get a refill on my Magic Mouth Wash to help with the sores, not like its going to help since the stomach isn’t in the mood for food, water or dew. Seriously I can’t even keep a Popsicle down at times, yes I said a Popsicle.
  
  Welcome to my jacked up world of Stage IV Cancer with Sjogren’s. The good news is I don’t have to do a gluten free diet……..score one for the mac and cheese and pizza 2 things my tummy will allow to stay but on three bites if I am lucky. It is sad that it took me two hours to eat my Bojangles two legs, a biscuit and mash potatoes and gravy, and then pray it stays down as your head and stomach fight over whether or not to upchuck it.
  
  
  

• Friday, November 16, 2012 6:10 PM, EST

  LIfe in 3 months increments

  Living life in 3 month increments is getting kind of old but unfortunately that is the cards that have been dealt and there is no re deal in the game of life. T minus 2 weeks and 3 days to the dreaded CT Scan with contrast you would think it would get easier after um I don’t know after about 30 (that is just CT scan, not MRI, Bone Scan, Brain Scan, PET Scan and any other scan possible), it would get easier to drink the contrast…NOT…thank-fully they have improved it, it is no longer chalky requiring constant swirling, and I felt a little better knowing they make the med student’s drink the crap to test it…lol No way in hell I would drink it without a medical reason.
  
  On a brighter note I started my journey in a 1960’s small building at UNC where the treatment rooms where small and cramped to a mufti-million dollar facility with more space, individual tv’s in the treatment room, which I only got to use 4 times before the Doctor’s allowed me to get a chemo break. I have seen new machines and have learned that my family has some serious bad genes and I got all of em…speaking of TV’s I wonder if I could hook up my playstation during treatment, although I am still going to be petitioning to have Chemo on the kids floor where all the toys are at..
  
  I have a little list of things I need when treatment has to start up again, my poor laptop has seen better days, haven’t decided on a I-pad or cheap lap top. Sort of still leaning to lap top since I enjoy writing stories, watching dvd’s and paint. I got to resort my various items that go into my bag to provide me with entertainment on my monthly adventures to the land of blue.
  
  Good thing I like web surfing and reading it seems every appointment brings another dx that has me researching and my doctor’s scratching their heads. It would be me that gets a combination of medical issues the doctor’s have never seen, and treatment for one aggravates the other. It is a very delicate balance of meds, food, water, rest, sleep, exercise, & work to get through a day. One misstep can screw up an entire week and even a month.
  
  Thank-full the holidays here which is going to be real interesting since it is a double edge sword, I will be able to recharge but have to be careful not to overdo it. Last winter I ended up with walking pneumonia which didn’t slow me down, which my doctor knew and threatened to lock up me up in the cancer hospital if I did take like five days off, she was prepared to call the AD’s office. I did think about cruise in 2 days later but, I knew she had a student spy, her daughter.
  
  
  

• Monday, October 29, 2012 10:52 PM, EDT

  Once u take a sigh of relief that u finally get pain and issues under control, something else. Well really an issue that likes to flare up and the worst times, the lovely freaking liver. Unlike in the past more symptoms are showing nausea before, during and after eating, sometimes all three, two, one or none, pain in the right shoulder blade, stabbing pain in the back, bloating, pressure, twinges, etc.
  
  Before the symptoms where just a slight irritation, and I just basically starting ignoring them because all the test kept coming clean and blood tests showed the liver enzymes where fine. But the majority of this month has not be very fun, in all honesty I think I have got a total of 48 hours of sleep for the month, the best and longest sleep was actually in Boston a few weekends ago.
  
  My body needs liquid preferably water my stomach as usual is against that, I am lucky if I can down three waters. If I don’t have at least 2 bottles of water I wake up to headaches, but guess what it takes like 4 hours just to get 16.9 oz down. Even the Dew isn’t working not only that the stomach is against food as well, two bites and I am done if even try to take another one, I get the lovely taste of the food coming back up. If I try to eat in the morning, the food comes back up, currently trying to figure out what if any food will work in the morning. I know for one thing defiantly don’t drink water in the morning unless u want to taste stomach bile, yeah fun times in the am. Right now during the week I eat around 11am/noon either KFC or Bo jangles chicken legs, mash potatoes and a biscuit, and I can’t even finish that.
  
  Basically my energy output far exceeds my calorie intake, and it feels like the liver is swelling and aching when I eat. At night it literally takes me minimum 2 hours max 6 hours to get enough food in my system in hopes I can finally get the body back in a rhythm. It sucks to literally have to take nibbles why u try to keep the nausea and turning stomach from coming back up. But the increased water intake leads in an increase in bathroom visits, which means less sleep. Got me some popsicles and fudge bars to help with the liquid intake, right now the stomach is accepting them hopefully they will help.
  
  Work is slowing down as the fall sports schedules wind down though I still have several projects that need to be complete this week. One project I am going to turn over to the students to finish just got to write down the measurements and let them go to town on the heat press. I picked up some ABC’s with meatballs in an attempt to have that for breakfast when I roll into work in the morning. Hey on the bright side I can fit in my old pants now. And yes for those thinking I have emailed my doctor.
  
  As of right now my CT scan with contrast is scheduled in Dec 4th but I do have an appointment on Nov 19th with my GYN who also happens to by a ONC (oncologist-aka cancer doctor) as well, but she is not my primary. Not sure this could possibly be the Sjogren’s attacking the liver but since my cancer had spread to my liver when I was dx 2008 that is the most likely source of my problem. I am trying to go through my paper work to see exactly how many spots I originally had, I remember one was the size of a quarter. I vaguely remember seeing the scan on the ancient computer in the old cancer hospital, I due remember that my entire left lung was bright yellow, and my right lung was speckled lightly. I wonder if I can get a copy of some of those scans to go along with the one me and my sister have of our moms she gave us for Christmas. I imagine the word WHAT!!!!! Has flashed in many of your minds, but hey ur talking to a family that takes pictures at funerals including casket shots. Well off to finish off a bottle of water eat a piece of cheese, and another popsicle and off to hopefully a peaceful sleep.
  

• Friday, October 26, 2012 12:51 AM, EDT

  I should be trying to sleep but I made the mistake of turning the channel to secretly pregnant now I must see the ending......in reality I am trying to exhaust myself so I can hopefully sleep and not wake up feeling like someone is squeezing my head and then having to upchuck stomach acid becasue my stomach & taste buds disagree and my stomach doesn't want in food..I need more water but guess what water is what makes me upchuck...the foods that use to stay down no longer stay down...baked potato yeah it doesn't taste the same way coming back up....
  
  I think the worse thing is blowing ground turkey out of my nose when my stomach rejected soup for breakfast.....Basically my food intake is not equaling my energy output, but my stomach will not except normal portions, I am not talking about the super sized American diet, I am talking normal size like a chicken leg, mashed potatoes and a biscuit.   Even one bite too many and the stomach rejects it, not enough the stomach rejects it.. Ont top of that sores appear and disappear in the mouth....it literally takes a couple of hours to eat a meal..
  
  Trying to slowly get more water a little bit of food washed down with dew and took 3 hours to get 1 bottle of water down...now going to try for a 2nd before going to sleep....work by 8am to get cross country off..and hopefully off by noon so I can figure out what foods and other adjustments that need to be made...It is so frustrating becasue of the Sjogren's I need to stay on a schedule so sleeping in or taking naps can really screw everything up the entire body.  I will admit this last week I have actually been sleeping longer probably becasue its like 1am and I am still awake.....so many shows to watch and catch up on and so little time...
  
  The plan is to take it easy this weekend, I will swing by the office around high noon after cross practice is finished and track about to start, get the laundry washed, do a little spring cleaning, start issuing the last piece of screen some of the kids half-zips.  Definitely taking off Sunday..I wonder is the flea market back open yet???
  
  
  

• Saturday, October 20, 2012 1:45 AM, EDT

  Life with Terminal Cancer and invisible Chronis Illness

  It has been a while since I posted, like others I “try” to forget that I am Stage IV and attempt to live a “normal life” yeah no really possible. My phone has several alarms some to remind me to take the pills, the calendar goes off to remind to pay pills or do other things. Why? Side effects from the poison aka Chemo that was injected in me for 2 years , the 31 days of radiation the dozen surgeries since 2008, 7 of those in barley over a year and half takes a very high toll on one’s body. Now I have to take pills to control the aftermath, but the pills bring along their own side effects. Basically damn if you do and damn if you don’t. Every day is a struggle just to get out of bed , pop five pills so you can get thru the day, force yourself to eat even though you aren’t hungry, making sure you eat just the right portion if not it is coming back up, it also has to satisfy not only your taste buds, your stomach and it must also not burn or irate your mouth. On top of all this I only have a limited amount of energy that must be used wisely in order to get everything I need or want to do. It is a delicate balance of getting the right amount of exercise without exhausting yourself.
  
  It is so frustration having to adjust to a new reality, just when u think it can’t get in worse, you get slammed with another problem associated with an existing issue. For basically 4 month’s my parotid gland has been swollen, and I have been basically told deal with it, nothing can be done. As long as you have no fever all is good. Next up is the ENT lets see what he has to say about the knot on my jaw behind my ear.
  From the outside I look normal a full head of hair after about three years of bald or very little hair, a little chunky alright a little more than chucky…but hey can’t help what meds do and crap load of steroids from treatment and for some reason my body retains excessive water and swells at well weird times, doctor’s have no explanation other than u gots fucked up genes.
  
  What people don’t see is my x-rays look like an 80 year old, I have degenerative arthritis in my knees, the left more than the right since I tore the ACL in that one, both ankles the right one more than the left and yes Nicole I shouldn’t have scaled the fence at the track after pictures my intern year. That would be the same year I caught the tape gun almost cutting my finger tip off and once again Nicole to the rescue super gluing my finger. Oh the many uses of super glue and lets not forget duck tape one can find when in a pinch.
  
  Schedule, Schedule, Schedule I am sick of having to maintain a strict schedule, not being able to make too many last minute changes. I was actually shocked I was able to travel over this past weekend with women’s soccer and not become over exhausted. I guess keeping to a schedule does help since the road trip felt just like a regular home weekend. Keeping busy has also helped forget about the shitty reality, that no one really could change it just happens to when the cards where dished out I some how got the crappy hand..oh well shit happens …………..
  I seriously need to play the lottery all the cards can’t be shitty, maybe just once I will hit the jackpot…Because I seriously need a new lazy boy, a Jacuzzi/sauna, a huge big screen tv with surround sound…but In all honesty I need it for the ever building medical debt that piles up every month in my fight to live. I basically work overtime just to pay my medical bills, I am really getting tired of living month to month and the balance still climbing…….Well that is enough of the depressing shit…back to watching 31 days of Halloween…Addams Family Values waiting for one of my favorite scenes Thanksgiving Day Play…
  
  
  

• Monday, October 8, 2012 9:35 PM, EDT

  Another October here and Pink everywhere to make people aware of “breast cancer” after about 20 years I think everyone has gotten the message. Enough with raising money for awareness shit how about actually applying the millions on treatments or better find a damn cure. All this pink shit today is about making money about 95% of the pink merchandise goes in the pockets of the manufactures, they know selling pink in October is going to bring in the cash.
  
  The only Awareness that is being taught woman can get breast cancer, did you know that Men can get it too? How bout women under 40? Did u know that approximately 5% of patients are diagnosis out of the gate with Stage 4? Better yet can u tell me what the Stages are? Or better yet how many different Treatments are available? Or can u name the different types of breast cancer? Or the fact less than 5% of money donated goes to funding for Stage IV. Or the fact Stage IV patients are shunned and not allowed in most all Support Groups, Why? Because they might scare little Susie who has Stage I….or they fact most support groups the women are over 50 and the problems they are having is nothing like those under 40.
  
  Breast Cancer isn’t pretty pink, it is some mornings having to literally crawl up the stairs to make breakfast that will hopefully stay down. Why? Because I was 29 when they discovered that know wasn’t a hematoma it was cancer, and it had spread, that is why I had pain in my side my liver was covered in tumors and why I had trouble breathing not because I was out of shape but because my entire left lung was covered in small nodules. Basically when they scan your body there should be no yellow glowing spots, not mine my entire lung was yellow, my right lung had just a few spots, my liver looked like it had poke a dots.
  
  Unknown Territory: That is what the doctors at UNC stated as they tried to come up with a treatment plan because the Standard Treatment Plans did not apply. Why you ask? Because those under 40 aren’t suppose to get breast cancer especially Stage IV, so the doc’s have to come up with the plan on the fly. Being young, relatively good health, and more resilient the doctor’s are more aggressive in there treatment. Problem with that is they have absolutely no idea of the long term affects…basically I am one of many Pioneers, and an anomaly. I have been in a chemo break which is unprecedented with a Stage IV patient since Fall 09 yes many have been stable or ned but are still taking some sort of pill or chemo, I am not. This doesn’t mean the long term effects of the chemo, the radiation, 7 surgeries in 2 years, arthritis, joint swelling, pain and aches through out the body on a daily basis. My boob’s looks like a fucked up Barbie because I got an infection which changed my treatment. I was supposed to have chemo while the plastic surgeon filled the implants up and then radiation. That changed after a 2.5 day stay in the hospital and I had to start rads. I have a bag full of pills just to get thru a day not only for my cancer but for what happened when my immune system came back on line…..another genetic defect was activated one that caused my immune system to attack healthy cells. Mouth sores, yeast infections down the throat, dry mouth, swollen glands, severe dry eyes
  
  
  

• Sunday, September 23, 2012 9:01 AM, EDT

  As predicted the antibiotics isn't fixing the problem is was prescribed to fix, I still have a 25 cent gumball knot below my ear were the Parotid Gland is located.  It also feels like the knot is protruding into the throat had really had problems other than it feeling funny until I took that horse pill of an antibiotic that I just took. My liver is also starting to act strange and I am uneasy becasue the liver is a moisture gland that can be attacked by immune system.
  
  I am also limited even more on what I can and can't eat becasue if I upset the stomach that means acid will come back up my throat.  Currently having bread (ok cheese toast) and water.  I am suppose to email an update to the doctor's next week. The next step is where the Rhemutalogist didn't want to go steroids and were I don't want to go an endoscope to check out my throat.  Why? becasue stomach acid has been coming back up, burning, yeast infections, etc.
  
  When ever I got money again I have to make an appointment with the Eye doctor to check my eyes, the dentist to clean the teeth and discover how many $100 bills am I going to need to fix whatever is wrong,  And I just ran out of the expense drug that is suppose to stimulate salvia, I am not too worried since the gland is backed up any ways thank god pay day is at the end of the week.
  
  
  
  

• Tuesday, September 18, 2012 3:58 PM, EDT

  Thanks Sjogren's for the gift that keeps giving

  Well my left Parotid Gland swells up goes down, swells up goes down to the point I stopped counting.  Most of the times I have to take antibiotics to clear it up, when that isn't going on I get Oral Thrush due to the lack of salvia. Well apparently some smart ass cell decided to due a double whammie.  My left Paortid gland has been swollen for I guess over a month for the most part I ignore it tell it starts to hurt, the last time it was this big I ended up with walking Pneumonia.  If that wasn't enough if feels like the Oral Thrush is back appearing litteraly as I was eating lunch on Monday.  My cheeks are raw, there is little pin head looking blisters, he hurts to move the jaw, it burns, etc and that is with pain meds, not sure I want to know what it really feels like.
  
  I emailed UNC they are suppose to call me sometime to see if they are going to call in some prescription or if I have to go in.  Why UNC? and not my local ENT....one word MONEY $70 for a specialist due now..and the fact I would still have to go up to UNC. Which will be another $70 though it isn't due till a later date, plus whatever damn test they are going to run....
  
  As everyone says don't google symptoms, but becasue I was told that due to Sjogren's Syndrome I had a 44% increase in getting Non-Hodgkins Lymphoma I have to keep an eye and note all changes...and guess where this shit usually starts...you guess the stupid Parotid Gland. 
  
  It hurts to eat but U have no choice if I don't get solid food on my stomach I will throw up stomach acid or whatever liquid I may have drunk or eaten.  Yeah the tummy wasn't too happy with the funnel cake on Saturday or the pot pie for breakfast on Sunday or the hamburger and cream corn on Monday.  I however liked the Mac & Cheese I cooked at 1am that allowed me to finally be  able to sleep.
  
  There was a bright side for the first time in a long time my body didn't hurt when I first woke up at 530am but that would later changed as I rolled over and went back to sleep to end up getting up at 630am and had to take a pain pill...
  
  My mouth is dry, burning and painfully, i am clammy and sweaty which is partial due to the freon being out (at least that is what I am telling myself), my eyes are a little heavy but I am really not sleepy, well back to watching TV.
  
  
  

• Monday, September 17, 2012 12:19 AM, EDT

  Frustration....isn't the word for, when it looks like u have finally found the right combo, you draw the card that makes you go back to the start position in game of "Medical Life".  Trying to find the right combo of solid food, liquids, exercise, sleep and food. 
  
  My life is about alarms now, alarm to wake up, take pills basically every aspect, i long to go back to a care free time. Sleep? yeah I don't remember what that was like, to wake up fully rested.  Is it cancer? sort of becasue doctors have no clue what the long term effects our for the treatments they prescribe to young patients.  Because we are younger and theoretically have a healthier immune system they literally throw everything including the kitchen sink with no clue what the aftermath will be.  If that wasn't enough, I have an autoimmune disorder known as Sjogren's Syndrome, if you have lost count that is 2 incurable but treatable conditions.
  
  I have got to figure out to get the damn Sjogren's under-control, because I am not sure how much more my body can take, I would like more than a week of constant sleep and would actually love to wake up fully rested, funny thing is the last time that happened I was on Chemo.  That my friend is the double edge sword of my life know, the Sjogren's is apparently keeping the cancer at the bay, but at a very high cost.  If that was bad enough the monthly cost to attempt to control it seems to increase every month. ugh well I am going to attempt to sleep.
   
  
  
  

• Wednesday, September 5, 2012 8:43 PM, EDT

  Testing for sjogren's

  Currently 2 people in our family have been officially dx with Sjogren's Syndrome.  I know many of the cousins have similar issues that I have been battling.
  
  First off you need to make an appointment with a Rheumatlogist you may need your General Physician to give you a referal.  Ask for a blood test to look for the Rheumatoid factor and Anti-Nuclear Antibodies (ANA), anti-SSA and SSB antibodies. I had them all, having the Rheumatoid Factor doesn't mean u will necessary get it but u do have the gene for ir, no one know if it will get activated or what will activate it.  They can also do a biopsy of saliva glands on your face or your inner lip. 
  
  Normally the first 2 areas to get attacked are your salvia glands and your eyes.  Basically cotton mouth and gritty dry eyes. If your positive the next step will to be treat flare ups as the arise. You will need to see the eye doctor and have them do a tear test.  Basically they hoop a piece of paper off your eyelids to measure tears.  My test wasn't very good, they have placed plugs in the lower tears ducts closest to the nose to slow down the drainage of tears to help keep my eyes wet. Taking Fish oil and increasing in take of tuna and Salomon will help with the eyes.
  
  After the eye doctor off to the dentist and tell them what u have.  You will need to get a some treatment trays made in order to help protect your teeth from cavities. Lack of Salvia will reek havoc on your mouth, you will need to use Pronamel Toothpaste, ACT 2 mouth wash, and will use PerioMEd in the trays to help protect what little enamel you may have left.
  
  Other areas of attack is joints and basically any moisture gland like lungs, skin, etc. I have read a couple of articles that state boils and fissures can also be caused by this disease.
  
  
  

• Wednesday, September 5, 2012 7:04 PM, EDT

  Living with a double dose of Chronic (Incurable) Disease

  Stage IV Triple Negative Breast Cancer & Sjogren’s Syndrome
  As we make our journey on the road of life we make many pit stops at different drive thru apparently when I pulled up to the window of Health my body felt it was necessary order from the Cancer menu, taking the #4 Triple Negative Breast Cancer, and decided to take the special being offered that day of an auto immune disorder just for kicks Sjogren’s.
  
  What many don’t understand is that I have TWO chronic diseases. Both qualify me for full and immediate disability if I so choose which at this point is a big Fat no. I am hoping the latest drug adjustment will help alleviate the pain and allow me to get thru a day with limited to no pain and a reduction in fatigue. It has been a interesting year to say the least trying to figure out my new world, as if the Stage IV Triple Negative Breast Cancer wasn’t enough for me. Doc actually told me she wanted me to do Yoga, ummm, yeah not but I did say I would do Roller Skating hell Karate or Tae Kwan doe…but Yoga a big NOPE, trying to slide that can I play Roller Derby in at a later date. She wants me to look at massages, acupuncture and other holistic treatments to go along with drugs to control.
  
  To make matter’s more complicated the cost to the wallet is just as bad as the toll it takes on the body.  Having Terminal/Chronic Cancer and a Chronic Autoimmune disorder isn't cheap more like damn astronomical, I need a 2nd job just for the medical.  But that ain't going to happen, I got just enough energy to work my current job, lol…basically after looking at my costs so far this year, I work overtime just to pay my medical bills, and yeah it still isn’t enough. Sitting at about 8 grand paid at the moment from Jan to now, this includes copays, pharmacy bills (up to $250 a month now…Yayaya.), and monthly payments of $400 to $500 a month to go towards my outstanding balance of around $16,000 and growing since we are in a new year for copays (started July) which means another $2500 to be added to the $16,000. I am seriously going to start buying lottery tickets next month,
  
  Now for a little education on my Auto Immune disorder, for family members guess what this is another lovely inherited gene that runs in both families and apparently a couple of older cousins on the Parker side have it. So guess what Rene, Asheston, Tonya, and Carrie u get double the chance since we are the Fab 5 that have basically all the same genes, and according to the doctor’s genetically speaking we are brother and sisters.
  
  I will post an update later with what u need to ask your General Doctor or Rheumatologist to test for to determine if you carry or have Sjogren’s. Tonya u do have, I have just sent you an IM.
  
  Below is from a Blog I found that helps explain Sjogren’s
  Sjogren’s Syndrome: The Dry Facts
  
  June 6th, 2011 • 1 Comment
  
  This was an entry in our “Write Something to Share” contest and is written by Sheryl, who writes at the blog Sheryl Aronson.
  When I was diagnosed with Sjogren’s Syndrome 6 years ago, I had never heard of it. Most people I talk to have never heard of it. But when I tell them the symptoms, it sounds familiar to many of them. Sjogren’s Syndrome (SjS), pronounced SHOW-grins, is an autoimmune disease that affects the exocrine (moisture producing) glands. Classic symptoms are dry mouth and eyes, but it can affect any system in the body, and often includes musculoskeletal pain and fatigue……………………………………………………………………………………………………………………………………………………………………………………………………..
  
  I also have acid reflux, very common in people with SjS. I don’t have joint pain, but I get tendinitis and bursitis at the drop of a hat, and they like me so much they don’t want to leave. Some I have had for over 20 years. I have had times when the fatigue was a constant companion, always ssitting on my chest, making me feel like I’m trying to move uphill through molasses. My brain felt like it was full of marshmallow cream, making even basic decisions seem very complex. Luckily, the fatigue has lessened this past year, generally visiting only at the end of a busy day or if I try to do too much.
  That concept of “too much” has changed for me. I used to be able to do anything I wanted. Now, “too much” is trying to work more than 2 days in a row, or shopping for 2 hours. I’m blessed in that I can still work as a psychiatric Occupational Therapist, though not full time. Many people with SjS are disabled, and as of last year, SjS is recognized by Social Security as a covered disability.
  
  I could go on and on, about other aspects of SjS, about living with chronic illness, etc, but this is enough of a taste for now. If you want to know more about it, visit the Sjogren’s Syndrome Foundation website. Thank you for giving me the opportunity to educate people a little about this disease, and share some of my experiences with you.
  

• Tuesday, September 4, 2012 11:45 PM, EDT

  Another 3 month check up in the book, got a new med that will hopeful keep the pain in check.  This could get very interesting.  Hopefully I will fall asleep as soon as my head hits the pillow, the question is will this new phone alarm wake me up?  Cause last time I slept thru it, for some reason the sound is not as loud as my last phone.
  
  
  

• Saturday, September 1, 2012 11:56 PM, EDT

  The three month check up in t-minus two days, not having a good feeling.  The plan was just blood test since I had been scanned in the summer.  But with the latest pains which I haven't emailed all to her since I see her on Tuesday.
  
  Many of the pains she already knows about I thought it was from the increased use of my upper body, but it is more than that now.  Rest should have alleviated the fatigue, I took an entire weekend and it didn't put a dent into the pain and discomfort it actually made it worse.  We know it is a combination of the treatment and Sjogren's causing the majority of my issues but I am concerned with pain and achy feeling my body is going thru.  I have a deep pain behind my shoulder blade and on the chest side similar to brief pain I got with the tumor back in 07/08.  I just purchased a book on Sjogren's for Barnes and Noble and I have been going thru the Chemo Cook Book.
  
  What makes this so difficult is that I have two concurrent issues, Stage IV Metastatic Breast Cancer and an Auto Immune Disorder Sjogren's so there are a lot of factor's that need to be considered.  We have also been going thru medications trying to find the right combo, we fix one thing and then another issue flares. I am listening to my body but nothing at the moment is alleviating the fatigue except my attempts to ignore for brief periods.
  
  People are still not grasping that I have a set amount of energy that I have to spread out over the week.  If I exceed my energy limits my body pays a very high toll.  I can't drive down to the coast for the weekend, I am lucky if I can get to the damn doctor and back.  There is no pill that will magically allow my body to physically endure the 2 hour trip down and 2 hour trip back.  It could literally take me 2 months to recover.  I am lucky to make it back up the stairs after I get home from work.  And no I am not over doing it at work, it is actually worse for me to do nothing, work provides the exercise my body needs, becasue the less moving the worse the pain.  Basically my condition is a double edge sword damn if I do, damned if I don't.  Life is know a stragteical battle where I have to draw up plans on daily basis.  Lucky Monday being a Holiday and W Soccer off, I only have to go in if XC is training to wash there gear.   Thank-fully women's soccer game is at 3pm tomorrow so I can sleep in and recharge some more.   I was afraid Friday might have been more than my body could take 14.5 hours surprising it wasn't that bad, only issue was not going to bed when I was suppose to but the cat nap this afternoon leveled the field some.  But the good thing is a busy soccer season is less time to dread upon the chronic pains.
  
  
  
  

• Thursday, August 30, 2012 10:00 PM, EDT

  Frustration is where I am at now, trying to find the right combo of medicines, food, rest, water, and dew to get thru a day. I am so close to getting things under control but I can’t find the right combo, the first drug did nothing at all, the 2nd Naproxen helped a little, but nothing touched the joint pain & inflammation, then a fellow breast cancer patient found an article on a study being done at the very hospital I am getting my treatment, about keeping Stage IV Triple Negative under control with Celebrex. It has done it’s job but like everything once we get things under control than BAM something else pops up. The drug I need to fix this problem I can’t take because I am taking the Celebrex, ugh…nothing can ever be easy.
  
  I am going to have to set more time aside after work to do some more research to hopefully come up with possible solutions. I have an appointment on Tuesday, due to the amount of scans I have this year, if any I will only get a chest x-ray, and blood work. I got to remember to ask about my Vitamin D level to see if it has dropped again. I am going to try to stay on a schedule of getting up between 630am and 7am. Resting the eye’s a bit so I can continue to search the web for answers.
  
  I don’t know if it is phantom pain or what by I am getting the same pain I had in my left breast before my dx. It is a deep sharp/throbbing pain, and I am pretty much doped up. I am even having pain/irritation under the breast like I have sports bra on that is too tight.
  I pretty much had to take this past weekend off even though I really need to go to work but my body was like ummm no, thank-fully the soccer girls where on the road trip. Taken off the weekend didn’t help any It kind of made it a little worse, since a literally sat in my lazy boy most of the day, although I did get up and do some cleaning. Actually felt good until I went to bed and rolled in to work at . I was wide awake when I got home and sat in my lazy boy at 4pm. I have pretty much been keeping a structured schedule up off to work between 630am to 705am and I get off 4pm to 5pm. Over the summer I worked like 9/10am to 2/3pm which is not normal because are boxes came in later than normal.
  
  I have set alarms on my phone now to go off at medicine time, each day it is getting harder to get up but for the most part if I take my pills on time, and t is a busy day the adrenal kicks. Some days can be slow be thank-fully between entertaining coworkers and athlete’s, a slow day will fly by with the reacting or captivating stories and imitations of the Grumpy Fed ex man. This weekend will be interesting my first two game weekend, how will the body handle it? I think I have got a lot of the muscle soreness under control, but new pains are starting but hey that always happened when the 3 month check comes around. Tuesday I get to spend the bulk of my day at the Cancer Hospital, I have W Soccer practice in the morning than off to lunch time appointment. Which basically means I will be there all day since Tuesday are also Clinic days, my doc can easily get backed up.
  
  The best time on Clinic days is to be one of the first four patients after that it can be a long time. I get to enjoy the stares first because I will be wearing some sort of State gear and my red shoes since the nurse (Carolina fan) shook her head at them. The 2nd reason is because of my age since every other patient is on average 10+ years older and they are not the big IV baby. That normally ends any conversation, because most expect me to have Stage 0-II due to my age, when I say no I’m Stage IV, they normal go white, gasp and give you that poor baby look. Oh well that is why man invented the internet. I have only found 2 that where in NC about my age, they were dx after me that was just 2.5 years ago, sadly both have lost their battles, like many just over the last month.
  
  
  

• Monday, August 27, 2012 5:52 PM, EDT

  Let’s just say me and this auto immune disorder are not Seeing Eye to eye. Apparently I have found the your screwed fatigue flare, what sucks is no amount of sleep can get rid of it. Doing some research online, it looks like I may have to spend some money to get too books, because wouldn’t’ t u know if I have something it’s got to be rare with not much research and u know someone is going to make a dime off it.
  
  I found a couple of articles which actually explained those fissures I had right out of college, so looking back at my medical records and issues I had, I have had it since I was a toddler. Those ear infections as a toddler, the nose bleeds that plagued me in elementary school, than a calm period from 6 to 10 grades, then hello bronchitis and bronchitis so glad you could join the party, NC State doctor’s tried all 5 years to figure out what the hell was going on, with no conclusion. Then a year after I graduate I get the fissures, which refuse to heal, they come and go in flares, then 2008 hello Triple Negative Breast Cancer, oh and by the way I have already spread to your lungs and liver, so ummmm your like Stage IV…a yeah that would be the last stage…well thank u very much…..Well Chemo was a freaking breeze and suddenly all the problems that plagued me growing up when puff in the night after one (1) round of chemo….But good things never last, I get a chemo break and the parade of flare’s comes back in full force.
  
  Thank-fully I have the best ever ONC, originally I was one of her student’s patients but he got me at the end of his rotation. He moved on to the UNC Clinic in Charlotte, I was supposed to be given to another student, but since I am the happy go lucky cancer patient, I went to State and wasn’t much older than her eldest child, so she keep me. She is the one that put everything together after she eliminated cancer, and called her friend in Rheumatology, and low and behold another 1 in 4 million disease.
  
  But really this Sjogren’s shit is getting ridiculous, no amount of rest, no amount of sleep is touching this stupid fatigue and everything is flaring up dry mouth, nose bleed, difficulty swallowing food, burning in throat, yeast infection again in mouth, elbows breaking out, my ribs actually hurt when I cough up stupid green sometimes clear crap from my sinus. It is going to be an interesting month; I get to see the ONC next Tuesday. This weekend I am going to have to find some soft snacks and food to take to work since a lot of items are getting hard to swallow. It is sad that water actual dry’s my mouth out but Mt. Dew doesn’t…What is up with that?? I have even tried sipping as the internet says to do…yeah that makes it worse.
  
  Everything now involves irritation and pain, even the simple practice of brushing one teeth, it has become the most dreaded act of the day, my tongue has all these little cuts due to the Sjogren’s, and the required toothpaste and mouth wash BURN LIKE HELL…….and its not like you can brush them quick, the mouth wash is even worse, after spit it out my mouth feels swollen and it is numb this usually lasts an hour. Then I get to but this gel in some $700 trays and put them in my mouth while trying not to swallow the crap. I get some paper towels to spit in them since for some reason this act triggers my salvia glands who have been on strike all damn day till I put the tray’s in…Hey thanks a lot glands.
  
  http://www.nytimes.com/interactive/2011/09/16/health/healthguide/sjogrens_syndrome.html?ref=health
  
  
  

• Saturday, August 25, 2012 11:53 PM, EDT

  Changes and Fatigue

  Sitting in my den with my TMNT pants and Tee, for those older or too young TMNT=Teenage Mutant Ninja Turtles. Today I realized that I have to pay more attention to ensure that I take my Meds on time because missing just a few hours sends my body in to a tail spin. This week I did it twice on top of that since I started work full steam after the summer, I am no eating as much, like I really ate before but I had not been doing the physical work I am doing now. My body has never felt the way it does now even after my BMX. I do little or a lot the body still responds in the same way, it literally feels like my body has taken a beaten. My bones are sore, they ache, my joints are swollen which the Celebrex is supposed to help curb.
  
   My next ONC appointment is on the 6th, no scans are planned due to the amount of scans and blood test that have been done since Jan when I had walking pneumonia. Really my body hasn’t really recovered since that battle, one that the only reason I was discharged from the hospital was my promise not to go into work. The reason for this is simply two words Sjogren ’s syndrome and the fatigue that comes from it, if it is not one battle it is another.
  
  Decisions have to made, going to have to do some experiments to see if I can get this fatigue under control. I have to find neutral ground between exercise/movement and relaxing /resting. My body at this moment would prefer to stay relaxed in a lazy boy but that means pain, moving around all day with a job I enjoy also equals pain at the end of the day. Although my Dew got me thru cancer treatments I think it is adversely affecting my other disease Sjogren’s syndrome. I would be the one person to not only get terminal cancer but a chronic autoimmune disorder that has no cure. Thank-full a research hospital is close by and all my doctors are in one complex. The SS dx finally explained the issues I was having in college that the doctor’s at Student Health could not figure out.
  Not sure if I am going to try cold turkey on the Dew or just have a dew can a day, we will see. I have to try something because the fatigue and brain fog is taking its toll on my body. Have to remember this week to make my eye dr apt or I could wait and get Sandy to do it on the 6th of September. I about had a heart attack today when I couldn’t turn my PS3 on, luckily I found the problem, but now I have to figure out why the sound isn’t working. Originally I had the sound run thru my surround sound, but sadly my 10yr old surround sound has died, so I hooked the cords up to the TV but no cigar. I will figure it out tomorrow after I go into work for a few hours.
  
  I also have to sit down and go over all my bills and do more research to find some solutions to help keep my pain and soreness under control. I need to get back to my overly organized self and get back to reading my books if my eyes cooperate. Hopefully I will find something that will help my hair get a little bit thicker, before I have to shave it again. And I hear what you’re thinking, Don’t think like that…HELLO I have terminal cancer the exact day of my death isn’t written in stone but the line of what will die from has been claimed Breast Cancer, to be more specific the aggressive Triple Negative Breast Cancer. Yes it appears even to my doctor’s but for some reason my Sjogren’s is somehow suppressing the cancer at the moment. But the Sjogren’s is kicking my ass, you think it is under control but then BAM your hit with a 6 ton truck. Routine is a big thing that I must maintain in order to function, but I have not been doing good in that department. Am I in denial? Truthfully yes, when I go to work the fact that I am terminal is pushed way back, but I am reminded as I have to take my pain meds. It looks like I may have to take one full day off when possible and make Monday, half days. I seriously might have to look at nap time, was cat napping today than some damn telemarketer has to call an interrupt my nap..ugh so much for a Do not call list…
  
  I have gotten most of the pain under control now, I was supposed to go to work today but my body voted HELL NO. I do plan on going in for a little while tomorrow and maybe catch the 1st half of the Men’s Game and get carts into W soccer locker room. Because boy I am going to have a lot of laundry on Monday, the girls have been on the road for about 5 days. And for some reason I purchased an all-white uniform for our goal keeper, yes I know white for a girl that does a lot of diving. That being said she wore it on Thursday, yeah I want get to wash it till Monday. On the bright side she got a shut out wearing that all white uniform.
  
  
  

• Saturday, August 25, 2012 2:29 PM, EDT

  Let’s just say my body is not very happy, adrenal I think was the only thing that keep the pain In check after taking my pills late 2 days this week, that and not eating very much because I have no appetite so it is easy to forget. I need to go to work to catch up, but it looks like that will have to wait to Sunday, I am not sure even getting the pills back on track will help, wondering if I need a new mattress?
  
  I first awoke at 745am after going to sleep at 1am, looked up, laid back down rolled over and went back to sleep. This means I went past the 6 hour limit of laying down, even though the body needed the sleep it can’t handle laying that long. Sound stupid? I thought so to u but, I guess when your body has been put through a dozen or so surgeries, getting poison pumped in it, radiated and downing 15 to 20 pills a day just to make it thru the day takes it toll.
  
  Oh well today will be a day in the lazy boy (another item that I need to replace), eating popcorn, playing on the internet, watching tv and trying to ignore the pain and discomfort. Once Carrie get’s home we get to go to Target to pick up I think my refill for Celebrex. This time I printed off the discount card for the way to expensive drug. I should be moving around some to keep the muscles loose but um no I am going to be lazy. I am thinking we really need to get a Jacuzzi.
  
  Tonight got to go thru the medical bills last count I am up to $7,000 which is basically about the amount of my overtime in paid medical expenses paid this year and its only August.  All together there is about $15,000 to $20,000 worth of expenses that require monthly payments which is basically more than my pay check after housing/electric/cable/internet is paid, oh and food. 
  
  
  

• Sunday, August 19, 2012 10:00 PM, EDT

  A Day in the life

  With the season in full swing, working more hours and getting an upper body workout from heat pressing equals additional pills. Had to talk to the doctor, we have added back the fish oil, vitamin D and ibuprofen mainly for my upper body muscles which are sore. I really don’t want to advance to the fentanyl patches which are the next step if the combo of pills doesn’t keep the pain under control.
  
  I wake up to a body that aches at every joint, inflammation, muscle soreness fatigue, u know if you lay to long it will be even more pain. U slowly roll out of bed, take blanket throw on chair, go upstairs get food come back down, get drink out of mini fridge, sit down , turn tv on, get laptop, and get Mr. Turtle. Take out 11 pills get take some, eat some more take more pills, watch some TV and wait for the pills to get in your system before going to work especially on weekends. During the week sometimes I take the pills at home other times it is a work. During the week the body isn’t as sore, it is at the end of the week when the culmination of the week’s activities has its biggest effects. It is a double edge sword limit activity equals increase pain, increase activity is good for the body but it also takes a toll on available energy.
  
  Shoes, shoes, shoes still trying to find something that my feet will like, since they seem to swell, bad shoe selection today my heels are rubbed raw thank you rain. Looks like it will be flip flops the rest of the week and more ibropen for the calf muscles.
  
  The hardest thing has to be repeatedly explaining that Stage IV is Stage IV, many think I am done with treatment and wonder why I take all the pills. If it wasn’t for my meds I could not make it thru the day, those who haven’t been thru it have no idea the toll it takes on one’s body. Especially for those who are young with Stage IV, because of our age the doctor’s are more aggressive and because it is not the norm for people in our age group to be Stage IV there is no research to show the long term effects the treatment has on a person body. Majority like 95% are over 50, it is standard for women to start having mammogram at 40, not at 20 unless their family had a long history of cancer.
  
  My driver license may say I am 34 but my body is more like 84, I literally have to force myself out of the bed. My body feels drained like I have ran a triathlon my joints swollen, the muscles ache, the mouth is like cotton, and pain radiates throughout the body. On an ideal morning I slowly make my way to the lazy boy with blanket in tow, I proceed to throw blanket on my lazy boy and make my way upstairs to get some food, back down to chair, grab drink out of mini fridge, settle down and watch some dog the bounty while I take all 9 pills. A pill that is suppose to increase salvia in my mouth (evoac very expensive), Celebrex (1)/Ibuprofen (2) for inflammation and muscle soreness, Plaquenil (1) for fatigue and to stop my immune system from attacking healthy cells, Pain Med (1), muscle relax (1), Fish oil (1) for my eyes and vitamin D (1). So basically I take 9 pills sometimes 10 if I am taking antibiotics like I have been for the last 10 days and this is just the morning. At 1pm I take 2 to 5, one for my salvia, muscle relaxer and 2 to 3 for pain. At night I return home go down stairs put mister turtle in his rocking chair he shares with the Cabbage patch kid.
  
  Go upstairs grab dinner come back down to lazy boy get some food and take my 9 pills and relax until the clock ticks to 10pm and the eyelids begin to fluttery, and hopefully I can crawl into my bed, head at the foot of the bed and hope I can fall to sleep. It is getting close to ten and my eyes are starting to feel heavy.
  
  
  

• Tuesday, August 7, 2012 11:44 PM, EDT

  Normal what I would give to turn back the clock to 1990’s, fashion may have been bad but at least than there was not a care in the world and there was no pain. That is the down side of being the young patient and breast cancer there is no guide because which means the doctor’s are writing the protocl as the go along. The problem with this is they have no clue of the long term side effects to young patients since we are young their approach is your young you can handle it, so we are going to throw everyting including the kitchen sink at the caner.
  As the months and years pass more and more young adults have joined the Stage IV Breast Cancer Club and the effects of the treatment we have been given slowly starts to show. Most doctor’s have no clue how to treat their young patients, where not your typically patient some have young children, some want to have children, most are at the begins of their careers only to be saddle with one hurdle after another. Every day there is also a new post informing posters of the most recent loss some dx before me but most after I got my stage IV dx.
  
  There are so many phrases that relate to the Stage IV Club, one being Don’t judge a book by its cover, a saying that applies to many Stage IV patients. I don’t have the tell tale bald head I sported for 2 years, or traveling up the road for chemo every 3 weeks or spending 31 straight days in the middle of summer getting radiation. Stage IV is Stage IV which is TERMINAL but treatable like a chronic disease. My case is unique to say the least as I said it before two family lines that should have never procreated resulted in me winning the fucked up lottery, I not only inherited the BRAC 1 gene, I also inherited another jacked up gene RA factor that can activate or just hang out, yeah guess what after using Chemo to wipe out the cancer cells, which it did but at a price it activated the fucked up gene that unlocked Primary Sjogren’s Syndrome. All the my doctor believes the cancer itself or the Abraxane activated, but looking back I believe it started while I was in collge which would explain all the sinsus/walking pneumaia I had in college.
  
  The one good thing is a busy day moving boxes, playing with hurdles, heat pressing uniforms, fleeces, sweats, tee’s and sock means a good night sleep. This week is already getting crazy as crap, everyone wanting 15 things done like now. One heat press machine and four sets of jerseys to make, plus practice gear while getting interrupted means something that would take just 3 hours is an all day and night affair. Bills to be paid and boxes to check in, bags to be packed, lockers in need of locks and name plates, one paper on why I need to purchase new hurdles because the current ones are older than me, lockers need locks, the girls want more towels and the boys need their nameplates up, soccer shorts need numbers and uniforms need printing. Another fun day in store main task that needs completion is my uniforms, got the size changes made in the warm-up top now to print 10-32, pack game bag, take towels, balls, chairs and other items to the track….Another full day which means when my head hits the pillow I am knocked the hell out.
  
  More prescriptions to get filled, going to need to get something to clear up the burning sensation down my throat more than likely another freaking yeast infection due to lack of freaking salvia. Well thank you stupid immune system, I would like to be able to eat and drink without my throat burning 24/7. I get to make one last trip this month up I-40 using more money I don’t have, overtime pay can’t get her quick enough. Also need to email the ONC to find out if I am getting a Scan or x-ray in September.
  
  
  

• Monday, July 30, 2012 6:56 PM, EDT

  Patch Testing

  So I finally got my appointment to get Patch testing done to see what I am allergic too.  The call from my favorite ONC Doctor plus my other four doc's is how I finally got the appointment.  But ummm yeah 48 hours with this shit on back, lets see it feels like its burning a little bit of itching.  Starting to get red splotiches I had with cephalaxin, which is suppose to be "normal" if hives develop that means I win a trip to the Emergency Room. She was like it is a far off possibility but we have to tell u, I told her u due realize if its not suppose to happen that means it is very likely it will happen for me, I am the odd ball patient.  The one that freaked out an entire room of nurses and patients when I had an allergic reaction to taxol, not just a little reaction like one drop hit my bed stream, 3 seconds knot in my stomach 6 seconds my throat closing up yeah....not normal I tell u.
  
  Oh and i am not suppose to do much with my upper arm to make sure the tape doesn't come off, so no weight lifting..lol...not suppose to sweat "heavily" really its like 105 degrees outside...that is kinda hard..I also got a blood test to check to see if I am allergic to latex suppose to take 3 weeks to get those results...
  
  This is going to be a very interesting week with Soccer Camp starting at the but crack of dawn on Wednesday.  Going in early tomorrow lots to do and so little time that I didn't get in till noon today and left a little before 5 to get my DVR switched, but the dumbass girl didn't give me a freaking remote.  So either me or my sister will need to go back and get one, I may do it over lunch.  Tomorrow I have to make another bag since apparently we have a late addition to the soccer team, now I got to decide what # to give this kid.
  
  
  

• Wednesday, July 25, 2012 9:37 PM, EDT

  The Untraditional Metastatic Breast Cancer Patient

  The UMBC Patient I think will be my new title, it is strange reading the blogs and posts of people in the same boat but having nothing in common. It is like being in a gray area between Stage IV and lower level patient who has finished all treatment. My experience is nowhere close to anyone I have found so far, found a few that had an auto immune disorder (not the same as mine) along with their cancer (majority not at IV), but their experiences are no comparison. I guess I drew one good card from the fucked up deck I was dealt, not having the side effects and getting the right meds to control my pain and other issues from the treatment and autoimmune crap.
  
  I am lucky to still be working and if one didn’t know my history they would probably think I was lying when I say I have stage IV TNBC. Sorry folks I have the medical bills which according today’s phone I am getting close to the $7,000 mark of money owed to UNC hospital, which will be going up to most likely $8,000 after the next 5 appointments, in a two week span. It is usually a look of shock some realize what the meaning of Stage IV others are clueless. Yes, I have hair, and no I am not taking chemo or 5yr hormonal pills (doesn’t work for my cancer) nor am I getting radiation. I Work is picking up keeping the mind occupied with tons of tasks, medicines seem to be working, I finally figured which way I have to sleep which was a task. In order to sleep I have my rituals turn TV on 251 unless it’s a rerun in the Den, turn up loud enough to hear while laying on my bed with my head at the foot of the bed, cell phone with alarm out of reaching distance.
  
  I need to find me some more crocs since that is the only thing my feet like except one particular adidas CC (Climacool Shoe).  A few appointments coming up as well, added them to my google calendar now just need to remember to email the boss in the morning with the rundown of appointments I have before it gets really, really busy at work. Also got to remember to call the Optomology…however u spell it to get the eyes checked since taking Plaquneil. So many things floating thru the mind at the moment, going to need to make a to do list at 10pm, for tomorrow’s work day, so I will be able to sleep without my mind running full speed. Thank-fully full work days ahead means a good night of sleep, but also means very long work days fast approaching got to love 2 a days, 3 if you count the seperate GK practice.
  
  
  

• Thursday, July 19, 2012 8:10 PM, EDT

  The busy season is fast approaching, so far the medicine has been working but the question is getting the insurance company to approve it again after I finish with my current refills.  Apparently they take issue to drugs with no cheap version and a $500+ price tag.
  
  I have one week till a bunch of dr. appts 5 in total, may reschedule one of them that is back to back days. Soon we will see how the meds work with the increased hours.  I have slowly been waking earlier and staying later, thank-fully busy days means the ability to actually remember the day of the week is fast approaching.
  
  Which means the dread scan is fast approaching, shit that means I need to go those back to back I have to get my Port flushed.  Sept. is when the faithful  scan determines whether or not I get to keep my hair.  All the doctors including world specialist since apparently my case is often a dinner time conversation at conferences all attribute the sjogren's syndrome for keeping me NED. 
  
  Even busier than last year more projects and my first ever ACC Outdoor Track Meet, Yes I know it is not until April 2013....But do u realize how much equipment they got....good thing soccer and track are in the same facility becasue so our student managers will be able to multi-task and get some track maintenance done.  Have to get the base boards installed on the jump pits and hold competitions with the students. We have to practice installing the boards and quickly flipping them, Why?  Because the athletes get practice jumps and the board is wood and there shoes have very shop needles on them that rip up the board.  So  after practice is done, we must un-screw  the boards flip them, tighten em and make sure they are level.   And I plan on having the fast board flippers in the Nation.
  
  Now back to a little relaxing, hoping to get slammed tomorrow, praying for a long day with lots of boxes and covered head to toe with dirt at the end of the day.  Did some spring cleaning in the office have a few more things to organize before the season starts.  Well hands are starting to hurt time to take the medicine.
  
  
  
  
  

• Friday, July 13, 2012 8:45 PM, EDT

  Well its back to my limited food that I know don’t cause epic itching/irritation from my knees down to my ankles after 11pm when I am trying to go to sleep. And NO I can’t take Benadryl, first off NC State Student Health tried every not antihistamine for the sinus infections I had during my entire college career, that now if you look back it was more than likely Sjogren’s, when you factor in the walking pneumonia every semester. The other reason is I am not about to have another side effect of Hives by mixing Benadryl with the other medicine. I tried lotion, running cold water on legs, used baby wipes, etc noting worked, as soon as it was the 4 hour mark I took another Oxy the itching was less irritating and finally I was knocked out.
  Not sure if it is just preservatives that are in the food or the food itself, seems popcorn may be one of the culprits, along with noodles and my cheese, possibly hamburger too….damn u grocery store…………
  
  Now its pack to minced clams in a can and tulpia, kraft macaroni and cheese for the moment is still on the menu, know I must find a new snack since popcorn is out….Chips are limited but the desire sometimes wins over the pain & irritation of the tongue. Ice Cream also burns but its hot as hell outside, and I am addicted to ice cream bars at the moment.
  
  Glad the season is about to start which means other things will occupy my brain, but damn if I don’t have a crap load of appointments coming up at the end of the month, I think like 6 which I need to add to my google calendar. September I believe is the dreaded CT Scan or chest x-ray not sure which one, so much to do on both ends work and cancer treatment. Next project Hurdles take 2 time to go thru all the hurdles one by one, last time I did this was 2005/2006 according to my records the year we didn’t have the Relays due to track construction, as I searched high and low across campus for the hurdles, 2 carts where MIA. So I replaced the two carts before the either 2006 or 2007, fast forward a year or two later, and I get a call that the MIA hurdles had been discovered, so that is how I got 12 carts instead of 10. This time I will be able to do what I had planned in 2005 to put inventory # on each hurdle so we can keep proper repair records on them. That and when it’s time for the Relays I know which ones will be used for the race, because I am also putting a cart number on those bad boys, each cart will have 10 lovely hurdles assigned to them. Dude even the starting blocks are getting Lane numbers, I might even go as far as labeling the shovels and rakes to the event they belong to…lol
  
  
  

• Monday, July 9, 2012 9:59 PM, EDT

  I keep thinking how funny it is that I have the exact opposite side effects, take for example Plaquenil is suppose to aggravate a person who has psoriasis, which I normally get on my elbows and had until now. Well three months into Plaquenil and suddenly the psoriasis on my elbows and head is gone…..lol But for some reason the soreness of the arms and back is back, might have been the fact I basically sleep till about noon on Saturday, and was still sleepy I actually think I could have sleep the entire day. Hopefully Adidas will bless us with boxes so I can have a busy day which in turn will make me sleepy enough at 11pm to fall right asleep, one can only hope.
  
  Now if we can get rid of the body feeling like its 84 instead of 34 but I we can’t get everything we wish for or get unexpectedly like being Stage IV TNBC and been off chemo also 3 years. But there is always that fear of when the next shoe drops because once it seems everything is going good than BOOMMMMM…a stick of dynamite blows up like Willy Coyote is sitting in a truck full of dynamite playing with a lighter trying to catch the roadrunner……
  
  I think I am officially use to my new pills and actually remember to take them on time, I still can’t figure out this weird itching that comes up at variety of times. From what I have read it can’t be an allergic reaction because it doesn’t happen all the time and it can happen before or after or really anytime. I think some of it is a reaction to food I have eaten or something that has touched my skin. I just added some food back that I haven’t eaten in a while and guess what the flush face is back, but it could be 1 of 5 foods I just reintroduced; hopefully this patch test will left the fog so to speak.
  
  I need to make sure to stay on a regular schedule now it time for me to slowly start waking up earlier and getting my body use to the time I need to awake. So far so good I have a bunch of dr. appointments the first week of August and thank-fully it looks like it will fit well with the schedule so far since the first couple of days for W Soccer are during Summer School.
  
  
  
• Friday, July 6, 2013 
  Sucker….When u need to get something done pull the cancer card and get your Oncologist to call when ur other 3 doctors all agree u need a patch test all gave referrals and u still can’t get u an appointment and one of them is from the same damn department even the Med Student agrees….The scheduler refused to put me on the calendar, denied me four times over, so what else to do but send an email to the Onc @ the cancer hospital, to try where the other doctors have failed…her ass calls the Doc directly and guess what BAM suddenly there are several times available, so apparently it takes an Allergist, a Rhuematologist, a Dermatologist, the Med School Dermatologist dude and a Oncologist to finally get the damn appt. with the popular Dermatologist who does the patch testing….All this shit could have been avoided if they would have had just had my favorite scheduler Sandee at the cancer hospital request the appt a whole let less red tape. And the appt. is a three part appointment and 2 of the would be the Wednesday morning and Friday afternoon of W Soccer preseason camp.....hoping the appt are quick it sounds like they are only 30 minutes..so we will see....
  
  After all this I better be allergic to something good….we already know my skin doesn’t like latex or tapes….card board boxes….but damn four months to get a freaking appointment.
  
  

• Saturday, June 9, 2012 1:47 PM, EDT

  Just thinking as I was reading post and looking at other’s experiences especially those with Triple Negative about changing to vegetarians, cutting out soda in hopes of improving or preventing the cancer from returning for the lower stages and for the higher hoping to be stable, NED or both. I will admit I stopped drinking Soda for about 4 months after I started Chemo, saying If I get thru this I will never drink soda…..hahahah…boy was I kidding myself. I did however lose my taste for Dr. Pepper, but Chemo is boring and nerve whacking so it is natural someone would turn to comfort foods….Or in my case tootsie roll pop, kit kats, baby ruth, Doritos, tootsie rolls, sour cream onion chips…yeah I think u get the picture. Lets just say the dentist could tell which side and exactly wear that tootsie roll pop sat for close to two years…I addition to the case of water & Gatorade I drunk I had a soda as well first Sprite, then Sunkist, the orange soda did its duty it got me to NED, but due to acid content my taste buds and stomach wanted something different….Mt. Dew baby, I think there no slogan should be “Several bottles a day keeps the TNBC at bay”, I actually drink more than before cancer, the biggest reason is because of my Autoimmune Disorder that requires increase of fluids and it helps me to function, I would love to be able to drink more water but when it makes you hug the bowl like you have been partying all night you try to stay way at all costs. The one thing that was basically eliminated was fast food except KFC, Bojangles and Wendy’s. Two chicken legs and mashed potatoes, or Chili and baked potato are the only Fast Food which is usually once a week but I will be cutting those out as well.
  
  My approach and view it can’t get any worse why not live life the way you want too. I already have a terminal aggressive cancer because I inherited a defective gene, I have an incurable autoimmune disorder that makes white blood cells (I just happen to have a very low count) is attacking my healthy cells. Does make one wonder how bad would it be if the chemo hadn’t decrease the # of white blood cells. My doctor’s can’t believe I am still alive especially the one that found it, she gets excited the one time a year she sees me. She always has to tell the nurse assisting her compressed version of my journey. My ONC and Surgical ONC always bring up my case when the go to workshops and conventions, and the consensus is that the autoimmune disorder is that culprit responsible for me being alive.
  Now I am hoping that we can get my flares under control so I can go back to be able to drive down for a weekend at the beach without my energy being zapped and taking a week or two to get back to some sort of normal. I would also love to be able to drive more than 30 minutes before getting sleepy, go thing the hospital is only 30 minutes away. I have also come to the conclusion in order to be able to eat without upsetting the tummy I need to be on antibiotics. I will have to bring this up at my next appointment or via email. The last 10 days I have been on antibiotics and have actually being able to eat a normal portion, before I could barely eat which meant a decrease in energy. Which makes sense because I barely have any white blood cells and the one’s I do are too busy fighting good cells in my body. Well back to trying to find some less expensive remedies for some of my symptoms.
  
  
  

• Thursday, June 7, 2012 7:16 PM, EDT

  I finally got a reminder in the mail that told me which of the 7 specialist doctor’s I need to make an appointment with and it is the eye doctor. This is funny because my ONC just asked me this week if I have seen the eye doctor especially since I am taking Plaquenil which has a side effect of possible tears in the retina. I have not used any eye drops like I am suppose to because my eye’s don’t like them and they do nothing to relieve the dry eyes, expect burn them, make them sensitivity to light and swell up…lol. I know it’s not a good sign when I need to put more light on whatever I may be reading, or like today when I had to break out the magnifying glass to see the number to program the remote control. So next week I will add a new appointment to my notebook. I think the Evoac pill for my mouth is also helping the eyes, it certainly has fixed my problem of overheating, basically I didn’t sweat so when I got hot my head would to beat red because I couldn’t sweat. You can’t imagine how glad I am to be able to ‘break a sweat”....lol
  
  So far so good with the new drug combination is working I did have to take out the 2 pills at 3pm they were making me too sleepy. So now it is twice a day and 1 pill at bedtime if needed for pain. Swelling in the digits are down feet aren’t swollen, tummy is not acting up, and I can sleep an entire night in my own bed. One thing I didn’t want to come back is when my shoulders get sore/heavy if I pass 8 hours in laying down. I also think moving up the time I go to work for the summer has also helped, good thing none of my coaches are earlier risers I get in either the same time or 30 minutes after, once I get into July I will start adjusting my sleep time so I can get my body adjusted to the new wake up time, once Preseason starts.
  
  
  

• Wednesday, June 6, 2012 5:41 PM, EDT

  It is time to get back to more educational pieces as we try to disarm all the land mines that are in my pathway so I can be that old ass equipment manager at 80 yelling at the track and soccer kids for not turning their uniform in on time.
  
  Many thought I was crazy when I said I would rather been on chemo, well thru my research I find that this is more common than one would think. I have yet to find someone with the exact same dx Stage iV triple negative breast cancer and primary sjogren’s syndrome. I have found some with lupus and Rheumatoid arthritis in combination with Breast Cancer. A common theme in all of is when we were on chemo we had no symptoms. Why? Because our immune system was suppressed so it couldn’t attack our bodies. Like many others we felt great on chemo many, for some it was for the first time in a very long time they felt good but once the chemo stopped all those symptoms slowly started to resume.
  
  Because of the rarity I really haven’t been able to find in studies in correlation with autoimmune and cancer, but some articles are saying that cancer is an autoimmune disorder and that is why chemo and pre med steroids we receive gives us great relief. I have also found several articles relating to vitamin d deficit and its relation to both cancer and autoimmune disorder. i too had a deficiency in vitamin d as well, which is strange since I am outside and love milk cheese and fish which all provide this vitamin. I also found a 1999 article that looks at the correlation between autoimmune and cancer in general.
  
  http://thechart.blogs.cnn.com/2010/08/24/vitamin-d-affects-autoimmune-diseases-and-cancer-genes/
  
  http://jnci.oxfordjournals.org/content/91/23/1992.full
  
  http://labtestsonline.org/understanding/conditions/sjogren
  
  The funny thing is my Oncologist and the world experts who have talked about my case think the Sjogren’s Syndrome in my case is keeping me alive by keeping the aggressive triple negative from multiplying. I fellow cancer fighter gave me the link to an article that basically said keep inflammation under control with Celebrex, that is the exact drug I am know taking. My rheumatologist wanted to try melxicam again which I said no to. It has only been a week but I already have a significant decrease in the amount of swelling and pain in the hands and feet. Although I have found a need for napping after eating or just resting the eyes for a few minutes helps a little.
  
  
  

• Tuesday, June 5, 2012 8:52 PM, EDT

  Just when I thought I was catching up on my sleep and early morning CT SCAN and Doctor Appointment interrupts my schedule; on the sunny side I did actual sleep the entire night in my bed the first time in like 3 months. Totally didn’t want to get out of bed this morning was half awake when I had to drink that crappy contrast, which I will admit I only drunk 75%, the other 25% got a free trip into the bathroom sink. The scan looked fine to the doctor the official word will be emailed later, last week she was at breast cancer conference and had dinner with 2 of the world’s specialist and she told them about my case and the agree with her hypothesis that the autoimmune disorder sjogren’s is keeping the cancer in check. With not being able to eat this morning and take my pills has thrown a monkey wrench in my day now I have to get the pain back under control. Point in the future no more early morning appointments that involve not eating or drinking.
  
  The power port is still pissed actually the entire shoulder area and arm, at least the male nurse at the cancer hospital knows how to properly access it, so it had its 6 week flush, crap that reminds me I need to schedule a flush for the month of July and august. For those that don’t know a power port is a device implanted in my right chest that is a round piece of plastic approximately the size of the lid of a bottle of apple juice and is connected to my jugular in the neck. U can see three little bumps in a shape of a triangle underneath my skin, this if a guide for the nurses when accessing my port. This is done because long term use of chemos can destroy veins and I only have one arm available for IV’s my left arm is off limits due to lymph nodes being removed during my bilateral mastectomy. http://www.bardaccess.com/port-powerport.php
  
  Know it is a waiting game to see if the new combination of pills will keep the sjrogren’s under control, approximately 12 pills a day depending on pain level from all the surgeries and chemo. The crazy thing for the day is I got a funny spasm in my upper left arm, craziest thing I have ever felt while driving back from the cancer center. Know I will attempt to spend the next 3 months in denial that I have stage 4 tnbc good thing is soccer season is fast approaching and we have a laundry list of things that need to be done to keep the mind occupied.
  Another lesson sort of learned no food equals very sleepy during the day but at night full belly and meds will knock you out. The problem with food is finding what will go done with no problems and stay; this is a continual battle with lots of casualties especially since chemo didn’t take my taste buds this autoimmune disorder is about too.
  
  My tongue is the latest causality a coworker asked the other day if my tongue was swollen, why I ask she replied ‘’you sound like someone who had just got there tongue pierced”….lol…I just happened that it was on top of that it’s covered in small scratches that even tooth paste and ACT II mouth wash burns….sad thing is I have to use those 2 products due to my dry mouth and to protect my teeth, but my tongue and cheeks are not happy it actually feels like my tongue swells after brushing and rinsing mouth out…oh well just another bump in the road of the “Real Game of Life” as promised Tonya I am making up new cards…..new jobs…congratulations you have Cancer and the hospital just took your house,…lol….we can’t forget the redneck path and you live in a trailer park or heck a camp ground………………………………….
  
  
  

• Monday, June 4, 2012 9:53 PM, EDT

  Why is it that strange pains always start the day before your CT scan? Get to spend a long boring day at the Hill , debating whether or not I will allow the nurse to access the port since I am going to the scanner in the basement of the children’s/women’s section and not the Cancer Basement. I believe at this point I have been in every single scanner they have, I prefer the one in the Cancer Hospital. I may wait until have the view the scan it see if there is anything wrong with the port and then let the Nurses in the Cancer hospital who know who to properly use a port go ahead and flush the damn thing. Port hasn’t felt right since that idiot nurse in the Spine Center or whatever the satellite scanner place is called.
  
  It feels like the Celebrex (my third arthritis drug) is actually helping with the pain and inflammation. I can actually write without my hand hurting or cramping and no strange pains. It is suppose to take a minimum of 6 to 7 weeks before we can tell if the Plaquenil is helping. Now if this can translate into Heidi getting some sleep I will be a happy camper. I just realized that I will not be able to eat any food till about 10am tomorrow, because there is no way I will be up by 430am to eat something before the 530am mark when I can’t have food or drink. Although 4am is when I went to sleep last night, oh well, although I have heavy eyelids at the moment, I am sure to be wide awake at midnight. Now we need to figure out why my esophagus is spasm periodically when I try to eat and the cause of the burning and food feeling like it’s stuck.
  
  
  

• Friday, June 1, 2012 4:53 PM, EDT

  I knew it was going to happen Wednesday night the lack of sleep finally caught up with and I went to sleep at 930pmish awoke briefly and midnight then at 3pm and 5pm finally rolled up to eat breakfast at 8am. This naturally means I got no sleep on Thursday night, I finally went to sleep sort of a around 4pm only to get up at 7am try to get a couple more minutes but that didn’t work need to get up and take my medicine before heading to work.
  
  Sort some of my paperwork and folders one pile for W Soccer and one pile for Track & Field, meet with Track Administrator…dummy me forgot to update one of the lines on the summary page after the coaches adjusted there sizes…apparently that was the only problem with the order for now…
  
  Before I departed for the Hill, Target called to say my insurance company finally caved in and was allowing them to fill my new arthritis prescription you have seen the commercial..Celebrex…According to an article one of the girls sent me there is a connection between inflammation and breast cancer metastatic. The theory is control the inflammation = control/stopping the spread of metastatic breast cancer, at least that is what happened with the rats…..5 minutes after Target called Medcom or whatever it is called the Insurance Pill Police called to say….we didn’t want to be we did allow the pharmacy to fill this prescriptions…but at any time we can change are mind…yada..yada….yada..As usually I was at the clinic for 2 hours before I had to depart to the Cancer Hospital.. My ONC left my prescription for my Pain Meds with one of the Nurses because Doc was out of town, so I had to get her paged good thing I remember to print the email, the nurse at the desk paged her luckily it was a short wait…then off to Target to get that filled and pick up the Celebrex and the Daflucann…or whatever that thing is called. Apparently Celebrex doesn’t have a generic because I spent $88, $12 of that was for the other 2 bottle of pills I got
  
  My plan was to go down to the coast this weekend but like all plans thing change, instead I will be relaxing in my lazy boy. My body and brain have both with some help from all my meds have decided it is a lazy weekend sleep and quiet time, maybe a little cleaning. Luckily I have the weekend to figure out how my body is going to react to the last pill. That and I get sleepy just driving from the Hill back to Raleigh. I will have to wait until I can spend more than a day and when I get my flares under more control hopeful the latest medicine will help
  
  
  

• Wednesday, May 30, 2012 8:34 PM, EDT

  It is strange the listening to music and even reading makes me very sleepy. On to the Nightshade Series now since book 3 of Dark Rising will not be out until April 2013, on the Nightshade Series I have to read Wolfsbane, BloodRose then the Presqueal comes out in August the Rift. On a tv note why does CBS find it necessary to cancel shows six months in that are actually good for example Wolf Lake from 2001 or even the latest Alctraez. Really CBS how about I don’t know promoting the shows and not preemptem them and have like a month between each episode. I am sick of seeing an episode then waiting a month before the next, or skiping an episode because it got preempted by something NO ONE WANTED TO WATCH like a Tornado that is GOING ON IN ANOTHER STATE, no offense but that is what the weather channel is for, last time I checked I don’t live in Midwest. There is a reason you have the same station in the single digits and one in the double, you manage to put different sport games on it so HOW THE HELL hard is it to do the same thing with shows. While I am on that WHY do we feel it necessary not to have Criminal Minds on Demand? I ask the question because you dumb asses preempted the ENDING which was all about 5 minutes to BREAKING NEWS which wasn’t breaking news since the Internet told me about 5 hours ago. I have yet to see the end of that episode and it was last seasons.
  Supposedly CBS is going to finally release Wolf Lake on DVD which means I can finally upgrade my TWC digital box, which as of now has all the Wolf Lake episodes on them recorded from the Sy FY Channel. I think they should bring this back but they cannot afford the originally actors they cost too much money.
  
  On lazy Monday Carrie and I watched the SyFy B version of Battleship which was called War Ships, which involved an EM bomb killing the computers. That remind her of Dark Angel where the world was dependant on technology than BAMMMMMM all gone and the world went to HELL in a HAND BASKET. I have decided that only Generation X and Generation Y (those born before 89) will survive, why because we didn’t grow up dependent on technology and calculators…Oh lord I am about to sound like my parents….When I was little we had no CABLE, calculators where BANNED for test…OMG you actually had to use your brain…….We didn’t have all the latest and greatest toys, remote control, PS 3, XBOX 360, a cell phone, hand held game, GPX, lap top etc………………………………Kids today can’t tell you where the sun sets, how to get out of the woods when lost…etc.
  
  Brings me back to when Sabrina was still alive her and Morgan was complaining because they couldn’t get on the internet…..That led me and Tonya to tell them we didn’t get cell phones or the Internet until OMG in our early 20’s. I think that was the longest they ever kept their mouth shut staring with big eyes and in a state of shock….It was so silent Rene had to stick her head in there to make sure they were still kicking…since Morgan can’t go more than 5 seconds without saying something. It is also funny how today’s teenagers do not read, one of my teenage cousins straight out said “DOES IT LOOK LIKE I READ!!!!!!!!!!!!!!!” Funniest damn thing ever said and she was dead serious. It is funny how all the woman on my mom’s side of the Family actually reads, funnier even yet the majority of them read those Romance Novels, you now the ones with Fabio shirtless on the cover.
  
  Now out of the first cousins (~50ish one side only maternal) only about 4 made it out with the reading gene with interest that range from supernatural, sy fy, fantasy, to Romance Novels. Funny thing is we live so close to one another we didn’t need walkie talks the can with a string worked just fine. On my dad’s side of the family let’s just say machinery, construction, dirt bikes, boating and hunting is more there speed, I do believe grandma humphrey did read. Someone actually made a comment today that they didn’t think we read!!!!!!!!!!!!!!Seriously that is the only thing that gets you through the long hours in the waiting room at the hospital. I seriously read a book a day during my 31 days of radiation, played on the computer for my Chemo.
  
  Friday I get to drive up the Hill to pick up my prescription at the Cancer Hospital and then off to the Rheumatologist at noon. Still trying to get use to take these dumb pills especially the addition of the Plaquenil my body is use to the other pills so I now the limitations and side effects. Now it I a little different and will change even more one of the pills is switched out. With it being summer I have turned off the alarm clock and let my body dictate the time to get up, get some breakfast then take 5 pills and 4 oz of liquid, I then have to wait at least an hour before I embark on any adventures both work, shopping and recreation. According to my calculations I am suppose to take the 2nd set of just 2 pills at work but I haven’t yet because between 1 and 3 is when I start crashing, and have to eat a milky way. Crashing because I am more than likely hungry, but food and drugs mid day may knock me out. So I wait till I get home at 3/330 to eat and take pills than I get really sleepy and take a couple of cat naps. Then at 7 to 8 another 6 pills and 4oz and crashing at 10, after I put some food in tummy, it looks like the addition of the Plaqueil is helping to knock me out and allow me to sleep thru the night. I have got 2 months to figure out this new medicine and routine with Fall Soccer approaching. Have to figure out limitations, amount of sleep, food combinations, etc need to make sure I don’t over extend and end up with walking pneumia again. My left gland is seriously swollen and one of the girls actually said it sounded like my tongue was swollen, because I was talking like someone who had got their tongue pierced and there tongue was swelling. Funny that it actually is, plus some burning and general irritation with whatever it come in contact with.
  
  
  

• Tuesday, May 29, 2012 10:43 PM, EDT

  Trying to keep my mind occupied have an appointment on Friday at noon with my Rheumatologist so we can try to figure out how to get my flares under control.  It is also a week till the dreaded scan day.  Wondering if the pains this time will be the cancer back.
  
  I can finally read books no telling how long my eyes will coroprate.  Also starting to build my diorama's again almost finished one I started a while ago.  Once I finish it I need to fix the beach shack I made a few years ago.  The fix my first dollhouse, build a log cabin which I haven't decided who will get this master piece yet.  So much to do so little time.
  
  Its almost 11pm need to find something to put in the tummy so hopefully I will sleep thru the night.  Question is how will my body feel in the morning?  Rested or like I have been hit by a truck.  I have learned that I have to eat more in the morning with all these pills I am taking, since it makes me queasy.  They also make me sleepy especially when I take round 2 which was suppose to be 1pm but ended up at 3pm.  About knocked me out, I was not happy becasue I was trying to read.
  
  

• Monday, May 28, 2012 9:57 PM, EDT

  I decided that I needed to write down when I need to take my pills,  Some are 2X a day others 3X and one is 4x a day.   I sometimes can't remember which one I have taken, so  I numbered the pills one thru five then picked out 4 times of the day 9am/10am, 1pm/2pm, 5pm/6pm and 10pm/11pm.
  
  9am- 5 pills and 4oz of liquid
  1pm-2 pills and 4 oz of liquid
  5pm--3 pills and 4 oz of liquid
  11pm-2 pills and 4oz of liquid
  
  I was suppose to be switching out one of my pills but apparently Celebrix is flagged by the insurance company and involves prior approval to being filled and the doctor has to fill out paperwork..Meaning I want get until after I see him on June 1 because he was going out of town that is why he and the ONC where trying to see if they could get some of the issues under control until the 1st. I already had the other drug good on Plaquenil making another appearance, if you will recall I had an episode of light sensitivity around the same time I started this drug previously.  
  
  Finally attempting to read again started reading the Calling today almost done with the book that is 326 pages long,  I would be finished if I didn't have to stop becasue my eyes got blurry, watched 2 movies with Carrie, worked on a diorama and took a short cat nap.....On the cat nap and dreams not sure if it is the drugs but damn I had guess you could call a lucid dream during my 15 minute cat nap where I was standing up high on a rock or something lost my balance and fell....Lets just say it felt so real I woke the HELL up
  
  My body is so exhausted but sleep does nothing, one should feel rested and refreshed after sleeping....not me 3 hours asleep my body actually feels more rested than 7 hours.  Funny thing is I am more awake at night then I am in the daytime, the whole body is off its teeter..I think I need to start drinking the ensure again maybe it will help if my stomach consents.  Hungry but not hungry becasue food means an increase chance of upchucking although no food has the same risk...
  
  Oh well may be I will read 2 books tonight the next book will be Wolfsbane followed by BloodRose then onto the James Patterson W, G and F, then Beautiful Darkness, and Creatures, followed by the Wicked Series....Sensing a theme here maybe Supernatural????your right, Werewolf/Shape-shifters, and Witches...About to go upstairs to cook a steak...yes I said Steak at 1030pm, I discovered the other night that I slept a little bit better after I ate Clam Chowder at 1am and went to sleep as soon as my head hit the pillow and slept through the night..
  
  
  

• Saturday, May 26, 2012 12:55 AM, EDT

  Yes I know its 1am and I am still up....As always I am a difficult case for the doctor's who are trying to figure out how to deal my shitty genes....Plaqneil has been added back to the mix, we are taken out Naproxen which had replaced the Melxicam that didn't work to celecoxib.  And for those who are older than me YES these are all arthritis medicines for inflammation. 
  
  I was lucky that another girl who I have meet on line also also has an autoimmune disorder found an article that she forwarded to me, it was a good find.  The research was actually being done at UNC but in a different dept so my ONC had heard about it...but in a nutshell control the inflammation control the spread of Metastatic Breast Cancer.
  
  Link Between Inflammation and Breast Cancer Metastases Identified, May Be Treatable
  http://www.sciencedaily.com/releases/2012/04/120401134939.htm
  
  There are several other things that can be tried like steroids but my Rheumatologist wants to stay away from that due to the scorais on my elbows and the long term effects it could have. Really all of the medicines available will adverse affect one or more of my exsiitng problems......So after I finish with the soccer games I will go to Target yet again to pick up my 5th pill and my replacement pills. 
  
  It will take 7 weeks before see if this new medicine helps, my Rheum wanted to make sure he talked to me before he went out of town.  I will see him on June 1st and the my ONC on June 5th I believe.  Some of the issues I know is just due all the treatment to extend my life.
  
  Hopefully after finishing my mac & cheese becasue apparently food in the tummy before I crawl on the sofa along with staying up as long as possible watching DOG the Bounty Hunter, means I will pass out as soon as I close my eyes between 2 and 3 only to wake up at 730am wide away, a little tired but not as tired when I sleep 7 hours.  Tomorrow 3 more soccer games, trip to Target, then sleep which could be until noon, then off to the $2 theater to watch Mirror, Mirror. 
  
  

• Thursday, May 24, 2012 6:54 PM, EDT

  Carrie asked the question of how many perceptions/over the counter I have….so I starting counting first with the fingers and then with the toes…ummmm 15 at its peak. Two of the over the counter Vitamin D and Fish oil I had to stop taking because it made me sick, so I increased my fish and sea food intake, I drops I rarely use which isn’t good because dry hours can led to cornea damage. I did have 6 lotions five of which is prescription and 1 over the counter which cost an excess of $100, but because of my chemical sensitivity I have a one new prescription until they due a patch test to see what I am allergic too.
  
  It got me thinking how many pills I take on a daily basis a whopping 10 to 11 plus 12oz of some nasty crap to deal with inflammation of my esophagus that causes burning, hoarseness and difficulty swallowing. The biggest thing is trying to sleep when one of the pills makes it difficult to go or stay asleep for the first time in a month and half I was able to go to bed at 11pm in my bed, you would think that was good…well not really. My body is achy and feels like I got ran over by a Big Mac the truck not the sandwich, I finally rolled out of the bed at 759am and warmed up some vegetable soup Carrie made yesterday. Now I have to wait for the drugs to dissolve, what was 1 hour when it was 3 pills is now 2 hours with 4 pills, three of the four cause drowsiness before I can make the short drive to work. I have to make sure there is no upchucking, sleepiness or blurred vision.
  I thought I had got the fatigue sleepiness under control when I was able to sleep in my bed Saturday night when I went to bed at 11pm………….WRONG guess what time I went to bed about 11pm couldn’t sleep drug my stuff back into the living room found a good channel to put the TV on and by 2am up used the bathroom, tried to get back to sleep..ummm…no everything Is starting to hurt because the last time I took any medicine was at 6pm……yeah head on one side of sofa, head on the other, back to the bed room, back to the living room at 5am took pain meds and back to room….so maybe 2 hours of sleep last night…
  
  At this point it is looking like besides having to drink contrast on the 6th for a CT scan, I may get a scan of the gi track something about barium to see what is going on in the throat. All I can say is that 4oz crap I got take three times a day is disgusting, reminds me of contrast chalk before they changed. I use to really dread scan day not because of what the scan would show but the fact I had to drink that crap mixed in with Coke….thank-full they make medical students taste the stuff, and someone was brilliant enough to come up with something that u didn’t taste. Now it is like drinking a flat coke instead of a flat coke with nasty ass chalk in it…that you had to continually stir and hope you don’t upchuck….To be honest about the fourth time I had drunk, I figured out you didn’t need to drink it all…so needless to say no one looking the ¼ at the bottom of the cup with ice made its way into the bathroom sink…..shhhhh…don’t tell em…
  
  Know the doctor’s are looking at all the lovely blood test they have done and knowing the main two they are probably coming up with some test they have yet to run to go along with the one’s they already have planned. I am going to have to wait until July to figure out what medicines and other crap I am sensitive too. Really at this point its pointless for the simple fact that from my calculations from Jan 08 to Dec 09 something like 4 surgeries one involving a trip to the ER being admitted and literally no food for or drink for over 36 hours to the point the floor nurses threathed to feed me, which made the Resident doctors move me to the surgery floor, where I stated there better be Sunkist and a box of Pizza in my room when I wake up. Well I didn’t get the pizza but I did get a bowl of pasta and two Mellow Yellow the hospital only had coke products….Then there was about nine months of chemo spread out if I am not mistaken, it when tests, surgery, chemo #1, chemo #2, the big surgery (I have the video evidence, yes they filmed the surgery)double mastectomy chemo 2 rounds, before the trip to the ER listed above the resulted in a surgery, which meant a change in plan, Radiation, which created another issue, my implants was suppose to be filled before radiation, but because of the surgery that didn’t happen, which led to the comment of my GYN who was shocked I was still alive and once she saw my name on her schedule she immediately pulled up my records to see the journey that started with her, she made the comment OMG that is the tightest implants I have every seen, because of the radiation it was harder for to fill the left breast which meant we didn’t feel them to the size we originally talked about. This tightness caused a whole other problem…after the Radiation in the Fall of 09 it was another round of Chemo #1, finally Oct 09 no more chemo………..yeah which meant my Immune system came back online, Good Right….Yeah NOTTTTTTTTTTTTTTTTTT…………………
  Three more surgeries would follow with the GI doctor, followed by two more with the Plastic Surgeon, If you are trying to keep count I believe that would be around NINE surgeries in like a 3 year period, with almost a year of chemo and a month of radation…….and no telling how many damn scans and x-rays, etc……………………………………..Then another defective gene decided it need to gone the fun and screw around with other parts of the body………….That dry mount from Chemo…yeah it wasn’t the chemo though it helped a little to the tune of $20,000 worth of damage to the teeth, It took almost a year before my ONC figured out which doctor could solve the riddle, so off I went to Rheumatology to add another doctor like I didn’t already have enough damn specialists…which by the way the co-pay for them is $70 every visit……………yeah took him like 2 visits over 3 months to say…..you have an UNCUREABLE but treatable autoimmune disorder called Sjogren’s Syndrome, like the UNCUREABLE Stage IV very aggressive Triple Negative Breast Cancer that can only be treated by Chemo wasn’t enough….so what does this mean ohhhh lets add a few more doctor’s to the mix
  
  ONC-Cancer Doctor who gets the final say in all treatment and drugs
  Rheumatologist, Dermatologist, Optometrist, ENT, Allergist, GI Doctor, ONC Surgeon, Plastic Surgeon, Radiologist, a Pharmacist (when I do Chemo)
  
  Funny thing is I think I am the only Cancer Patient who actually wants to be on Chemo, where I had no problems except a sinus infection………. Oh well need to look at the calendar to plan for a couple days off before a very pissed off Fed ex driver starts bringing in bunches of Adidas boxes. Have to finalize the w soccer order in the am, so the big boss can submit it so the girls want be playing clothes less, then finish off the track order have to check the shoe list to see how many shoes each of the athlete’s need for a season, double check to clothing #’s so when the coaches get back from regional’s we will be ready to get approval, then start on the equipment side needs, get some quotes and some approval stamps. At least I will have something to work on why watching 1A high school soccer that can literally put you to sleep depending on what schools are playing, it always kills me how big of difference there is in North Carolina between the 1A/2A school athletes versus the 3A/4A its like night and day the lower games sometimes is like a ping pong game meaning the ball goes back and forth with it really going to one side of the circle back to the other side with the ball never really going near the 18 yard line, then you blink and someone manages to out run everyone else to score and you missed it, then it goes back to ping pong. The 2A gets better but 3A and 4A are better they actually for the most part play the same speed as college either like a small school like UNC Wilmington/Elon and others like an ACC school. I will also get to clean and move around some things in the track shed, count all the soccer goals # them, so I can make a list for the coaches on where all the goals are located before camps start and the season, get a quote on soccer nets, and clips….I am seriously going to have to go back to making check off sheets, since the brain spends half the time in haze, especially with no caffeine aka Mt. Dew………..
  
  
  

• Thursday, May 17, 2012 12:20 AM, EDT

  Have not been having to much luck working with excel and Microsoft word at work I had completed something had not saved It and lost it. On top of that I spilled Mt. Dew all over my desk thank-full my the dew didn’t mess up the two binders with my orders in them. It did however soak the clipboard containing all the teams locker combo’s good thing the season is over, I have a digital copy and it was time to update them anyway. Although I will have to reprint the bill that soaked………………I did get as much as wanted accomplished with the phone ringing off the hook, issuing eight pairs of shoes, getting some adidas polo’s and jackets for our softball coach so she can go recruiting in our new school sponsor. By then it was time to leave for another damn Doctor appointment, and another $70 copay.
  
  At least this appointment got me closer to getting the appointment with Dr. Lugo-Somolinos for the patch testing that the Allergist wanted. After speaking with the resident doctor who reported back to my dermatologist Dr. Mauro who agreed that patch testing was in order, she also gave me a new steroid cream for my elbow that hopefully will burn less. I had a referral from the Dr. Yount my newest doctor but apparently that wasn’t good enough for the asshole when I called to schedule an appointment. No offense every job has it’s stressors but there is no reason to be a smartass and apparently in capable of reading comprehension. I called to schedule the appointment gave my id # and told him I need to schedule with Dr. Lugo for patch testing, and that I had a referral, so he pulls up the referral and says you already have an appointment schedule due you need to change…NO DUMBASS I just told you and you are looking at the screen that clearly states needs to see Lugo for patch testing, yes I had an appointment schedule with my regular dermatologist to have my elbows looked at. So this morning I attempted to schedule via the new website because the girls that answer back are a hell of a lot nicer then the idiots I have talked to when calling the # to schedule appointments. I have found that those that work at the Cancer Hospital are a lot more pleasant, helpful and know how to read and comprehend. Luckily the Resident is in charge of getting my appointment lined up, it will still be a while because the Clinic is real popular.
  
  Still have absolutely no appetite and don’t even get nausea if my stomach is empty like I use to, which might not be a good thing. Because before the cancer dx, with mets to the liver I didn’t eat, but after starting chemo and finishing if I got busy and forgot to eat my stomach would make it known. When I don’t take pain pills my liver hurts a little more and I still get that strange feeling like it muscle clenching tightly.
  
  Sleep wise is still crappy I can’t get to sleep before 2am and for now I can only sleep in the living room. Last night I actually thought I would make it to sleep by midnight, laying down decided to turn the TV off, bad choice. On a scale of 10, I had a 8 going on with my very favorite left salivary glands, I had only taken the oxy 1 hour and half earlier, living me only with the Naproxen thank-full it helped. And guess what time I got back to sleep you guessed 2am, after turning the tv back on and flipping the way I was laying on the sofa. REM didn’t last long as I had to get up twice to go to the bathroom, the 2nd time I also had to change the channel can’t go to sleep with an info commercial on. When I awoke at 900am I was clammy and sweating apparently I must be fighting something or my body temperature gauge is really off.
  Just took my disgusting liquid crap that is supposed to clear up whatever is going on in the throat so it will stop hurting when eating or drinking. If it doesn’t clear up in 3 weeks I get to go back and something by having to swallow barium…yada..yada…I sort of a tuned it out…yet another procedure soon they will have photograph, scanned and explored everything and still want come up with answer.
  
  As you can tell its midnight I am watching Toddler’s and Tiara’s not sleepy at all and eating a bake potato
  
  
  

• Tuesday, May 15, 2012 11:19 PM, EDT

  The question of the night will I fall asleep before Wednesday gets her or will it be another long tiring day.  Hopefully I will be able to sleep since I have work to get done in the morning before I travel back to UNC from a dermatology appointment at 115pm.  Then back to the house to finish whatever work I didn't get done in the morning.
  
  Debating on whether or not to take the entire day of Friday off since my body is exhausted that and I want to be able to go to the all day Roller Derby games on Saturday.  It is time to go back to a habit I had while on chemo since it is summer time turn the alarm off and get up with the body says too.  Eating is still an issue I wll start the medicine I got that is suppose to help the throat but I highly doubt.  Food, drink even damn tooth paste and mouth was burn and irritate the mouth and pain when I swallow or drink.
  
  
  

• Monday, May 14, 2012 1:52 AM, EDT

  Alright someone might have to come and pry me out of the lazy boy or sofa and get me to work on Monday. During events I normally only take my pain pills three to four hour before the event, and because I am busy or watching the events I block out the pain. But then I get home and sit down…damn if everything doesn’t hurt and it has been almost 2 hours since I took the pain pills and they still haven’t kicked in….Really my toe nails even hurt..maybe I shouldn’t have worn those flip flops Nicole posted on facebook….but I have no choice because of simple fact my feet swell up just like my hands…and new pains have developed and I am starting to get a little paranoid..let me rephrase that Scan Anxiety is setting in since my 3 month scan is coming up and I haven’t had one since Jan….I know what your thinking you have had scans, yes I had an MRI of the breast only, Chest X-ray, a shit load of blood test, and a MRI of the brain, haven’t had a CT Scan of the Chest and Abdomen since January.
  
  This scan is a little more concerning since another area on the left side underneath the left breast is also have a new pain which I don’t normally feel because of my pain medicine. But on the weekend days when I can sleep in meaning I take pills at midnight and don’t take the next set until noon when I normally take them at 8 or 9am then I get to feel the normal and any new pain that has started. A lot of the pain only gets dulled which isn’t too bad because I have a very high pain, that I am and not ready for the patches which was brought up almost a year ago……even the liver is hurting as well as my right shoulder which can be differed pain from the liver…that and my appetite is really gone now like it was before chemo when I had the spots, after chemo if I didn’t eat when I was suppose to I would get nauseated when the stomach was empty, now I could go an entire day without eating. Today I had two bites of mash potatoes in the morning, two chicken leg Carrie brought me at 130ish, a Quaker oat bar…and then a bowl of mac and cheese at 1030pm…..and I can hear some of you…but when you can’t swallow (I know what the dirty minded cousins are thinking), basically all food burns the tongue and then ur stomach doesn’t want to allow entrance to food which then fells like it is literally stuck in your esophagus and to top it off heart burn as the stomach decides it really doesn’t need that much stomach acid for the hell of it, then gets pissed when the sinus drains on said empty stomach and the lungs happen to agree with the stomach which starts a coughing frenzy some mornings and the only thing coming up is milky white spit and mucus all with stomach acid….I know have a bottle of liquid nystatin with 473 doses that apparently I am suppose to take four times a day with this tiny little syringe because apparently mucus does a lot more in the mouth than you think so with all the glands swollen equal a yeast infection on the roof, corner and apparently down my throat….and least that is the going conclusion on the swallowing issues so if this doesn’t clear it up, there is talking about me swallowing something and yada..yada..yada I think I tuned out at some point…..
  
  Why I tune it out because there is no cure or really not a damn thing that can be done except treat the flare ups as they come….that and the one medicine that might work is more than likely what caused the light sensitivity, nausea and his other shit…….Because damn it apparently I am not only good but excellent at not just being allergic to something but taken to another level, let’s see first there was Taxol the fastest ever seen and apparently it has been dissucsed at conferences, then there was the Cephalaxin that damn med student wrote, hves every freaking were after like three pills, the tape shield they place of the port when its accessed skin immediately turns red even before the nurse stuck it on, the damn drops the eye doctor puts in to check dryness in eyes and eye drops with preservatives burns and makes the eyes swell, damn it give me my chemo back at least it didn’t have any damn side effects…but knowing my luck it could make it worse.
  
  And yes I am still up at like 2am, maybe because the two cans of Mt. Dew and pain meds…about to crawl onto the sofa hopefully soon waiting for the heavy eyelids to kick in and then take another pain pill…really now my port is aching and I am not in the mood to make an unscheduled visit UNC to get it checked I think it is still pissed at the nurse from the Spine center and from having to sleep on the sofa for about 2 weeks now…the only place I have been able to sleep most of the night until I am rudely interrupted from a text granted it was like 11am but still, I didn’t go sleep to 3am..that could be the main root of my problem the body is way out of whack refusing to go to sleep refusing to wake up the brain and body just are not cooperating with one another. Then the Sims game got me on Saturday night so bad to play that the day before you have track meet where you should I don’t know go to sleep since your going to be at work all day…yeah but I had fun redesign homes and trying to get my teens music scores high so I can make her into a Pop Star..yes I bought the Katy Perry expansion pack that comes with wacky stage props and ummm they know have a Katy Perry Sim you can play with….
  
  
  

• Friday, May 11, 2012 4:51 PM, EDT

  Looks like we may have to institute nap time since it is OFFICIAL Summer, oh wait damn one more home track meet then some high school women’s soccer championships. Definitely going to have to turn off all alarm clocks once the NCAA Track Regional’s begins, hopefully that will get the body back into proper alignment.
  
  I have found that a full tummy makes Heidi sleepy, sorta like Thanksgiving day and Christmas Day eat than nappy time in the lazy boy as the football game plays on the flat screen. The pain meds may also be helping with the heavy eye lids, considering all three have sleepy on the back. Just got back from Target were I pick up two more prescriptions to add to the every growing list of medicines both prescription and over the counter. The sjogren’s has been kicking my ass since it gave me the lovely walking pneumonia, this week I get to deal with cotton mouth, dry, nose, throat and damn loud ringing in the ears.
  
  On a brighter note the house no longer looks like an episode of Hoarders since Carrie and Uncle Noland took all the boxes back to the coast. It was kinda of depressing walking in to a bare living room (aka Carrie’s Xbox land) with her superglued recliner chairs and her ancient desktop. Currently taking donations to upgrade Carrie’s computer so I don’t have to here the bitching because the dinosaur of a computer is taking a hour to do a 30 second process.
  
  Tomorrow I will start the task of H2O productions incorporating my stories and action figures to create sort of a graphic novel, and yes Tonya we will have some mini videos as well. So prepare to attach I-pod to the remote control four wheeler with Skipper driving like we did over Christmas. And seriously someone needs to figure out how to build a inflatable 1:6 scale raft, damn it if prisoners in Alcatraz can make them than you Tonya should be able to figure it out. Carrie is already slated on toilet making detail, make a mold and mass producing, and someone needs to find a miniature urinal.
  
  
  

• Monday, May 7, 2012 1:00 AM, EDT

  With school winding down it is time to use some of that vacation/sick time I got. Have to figure out a new battle plan for the fatigue and flare ups that have been plaguing me since Jan at the bout with Walking Pneumonia. Forcing myself to eat even though I have no appetite finding different foods because eating the same thing over and over again is getting ridiculous, problem is what I need to eat aka fruits is basically out….Why? Fruits have acids in them which doesn’t go well with Sjogren’s. Funny thing is I didn’t realize why I could only drink Mt. Dew, until TP pointed out that it didn’t have acid like the fruit juices and most other soda’s. Milk is one drink that came up, but I think my body is turn against dairy products, my favorite snack Borden sliced cheese is no more, it gets stuck in the throat and causes abdominal pain. Problem is that is what the dentist wants me to drink before bed to equalize the PH balance in my mouth.
  
  Food is the enemy basically everything seems to burn/irate my tongue but I have no choice but to eat, I have found that eating some amounts throughout the day keeps the tummy from being pissed. Also have to wait at least an hour before doing anything involving bending over or turn head side to side, if not a trip to the toilet bowl is on the menu. I have been slowly trying to work water back in the line up of drinks if the stomach will allow it, since it has issues with the elixir of life.
  The newest adventure after the nausea has entered the picture is I have suddenly started to sweat again. Since my adventure began in 2008 with the Chemo screwing around with my body’s temperature controls and then Sjogren’s joining in on the party my body doesn’t properly cool or warm itself. Instead of sweating I will get clammy and turn beat red, which the trainers can a test to since this transpired at the Raleigh Relays this year. The only time I usually sweat is when I am fighting some infection off, so when this begins I am always weary. It seems to start about an hour to 2 hours after I get to work and also after my stomach is full.
  
  On the good news my Brain scan was clean, glad I got the scan so now we have a base scan and we know there isn’t any mets. Which leaves once again the Sjogren’s attacking one of my nerves in the head, which means I just have to deal with it. I know that the light sensitivity is causing 75% of the problem but wearing shades all day is a little irritating.
  
  This weekend I was able to due a little reorganizing and worked a little on my Model Scale projects. Carrie and Noland will be taking a lot of excess items we have up here back to our coastal home, this will give us both more rooms to get back to our greatest skills creativity. Carrie will have space to working on her sculptures or paintings/drawings, and I will be able to find my escape into Scale Modeling. I have to put the finishing touches to my secret father day project, so I can get that off the work table. My plan is to have a Studio up here where I will mainly have my 1:6 scale models (aka 12” action figures and Barbie) and 1:18 scale (small joes/star wars). On the coast I will have another studio in the shed for my 1:12 (dollhouse scale) and 1:87 HO train.
  
  
  Yes I play with toys and it all started I think I was 6 or 7 when Carrie got Craig and I got Cindy the generic Barbie from either JcPenny or Sears catalog can’t remember which. I remember saving up my money and ordering dishes with bears on it for my tree house. I was about 11 or 12 when I got the Heart family which really started the whole thing, from a store can’t remember the name since it went out of business but it on Onslow Drive across the street from the bus station and before the Piggly Wiggly.
  
  Then that Christmas I got the Disney Beauty and Beast, Cinderella and some other doll, then every birthday, Christmas, Graduation and for no apparent reason I was given Barbie Dolls. Boy those dolls dolls started multiplying rapidly and I wasn’t the one buying them, it became a mother-daughter adventure, she claimed it was an investment? Ok she just didn’t want to admit that she is the one enjoying the dolls, I was too busy spending my money on Star Trek toys.
  
  Funny thing is once I get my own place, I get a lecture about buying toys, Huh? Ummm I learned from my parents, look at my childhood room with like 100 dolls in boxes…..So that is how my toy collecting started, now I have combined creativeness, art and my love of architecture into Model Scaling. Mom was a “Barbie Collector” meaning displaying barbie’s in there box, me I am a 1:6 kit basher, meaning I decapate the Barbie head’s I like and put them on action figure dolls that have more joints so you can easily pose them. Mattel had finally made action dolls aka the Fashionates, all the heads suck but I have some at home in boxes of the dolls that aren’t worth anything. That is why today if I think a doll will be worth something I buy 2 one to play with and one to keep in a box, the next doll to be had is the girl from the Hunger Games movie that comes with the bow and arrow from Mattel, one of the best I have seen of celebrity dolls. Most of the dolls look just like Barbie instead of being modeled after the actor or actress and this one also has an exact replica of her outfit in the movie.
  
  Toys and Art are also an escape from the real world, because it sucks at times especially when you are constantly on edge of whether or not that pain is mets or just pain. Now I wish I could get back to a routine of sleep but that is not happening since it is 1 am and I will fall asleep by maybe 2am and wake up 7 or 8 am. I have found that I can only lay down for max of 6 hours on a good day, if I stay in bed longer the body will be to achey and become very stiff. But the problem is I am exhausted and no amount of rest is helping, got to figure something out hoping to find some info on the Sjogren’s page, but it is hard when you have to be the unique person with the fucked up genes.
  
  
  

• Thursday, May 3, 2012 8:06 PM, EDT

  When will I learn NEVER let someone that is not a nurse at the Cancer Hospital attempt to access my port. She wanted to try a second time, NOT I got an IV instead. On the bright side this building did have the bigger MRI instead of the little kiddie one I was put in two months ago. Literally the kiddie one after all it was in the Children’s hospital. At least this time I could move around as long as I didn’t move my head that had to small bean bags and some kind of hockey mask over my head.
  
  Being that it is exam time and I get treated at a Cancer Hospital means my ONC is busy with Exams but I her nurse is suppose to find someone to read the scans and call me. Now the question is how long before the results and did the NURSE from hell screw my port up.
  
  Now back to watching TV as I wait for the food to digest so I can get up and move without the possibility of losing my dinner...lol
  
  
  

• Tuesday, May 1, 2012 10:40 PM, EDT

  So that everyone is somewhat on the same page of my crazy adventure it is review and a little update. We are like always still in uncharted territory with no map, and a compass of symptoms/flare-ups that are pointing into all directions. Let’s look back to the beginning and we have a learned:
  
  Stage IV= The Cancer has spread from the primary tumor (for me left breast) traveled through the blood stream and set up camp in the liver and lungs.
  
  Triple Negative Breast Cancer= This is a fast growing cancer that at this time is only treated with Chemo for example Abraxane, the red devil AC or Taxol which I am allergic too. This means that hormones have no effect which is WHY Heidi doesn’t take chemo pills like most breast cancer patient’s people know.
  
  BRAC 1 Positive: I inherited a defective gene which significantly increased my chances of cancer and a really bad family tree stock full of breast and ovarian cancer
  
  Key Points
  
  • BRCA1 and BRCA2 are human genes that belong to a class of genes known as tumor suppressors. Mutation of these genes has been linked to hereditary breast and ovarian cancer.
  • A woman's risk of developing breast and/or ovarian cancer is greatly increased if she inherits a deleterious (harmful) BRCA1 or BRCA2 mutation. Men with these mutations also have an increased risk of breast cancer. Both men and women who have harmful BRCA1 or BRCA2 mutations may be at increased risk of other cancers.
  • Genetic tests are available to check for BRCA1 and BRCA2 mutations. A blood sample is required for these tests, and genetic counseling is recommended before and after the tests.
  • If a harmful BRCA1 or BRCA2 mutation is found, several options are available to help a person manage their cancer risk.
  • Federal and state laws help ensure the privacy of a person’s genetic information and provide protection against discrimination in health insurance and employment practices.
  • Many research studies are being conducted to find newer and better ways of detecting, treating, and preventing cancer in BRCA1 and BRCA2 mutation carriers. Additional studies are focused on improving genetic counseling methods and outcomes. Our knowledge in these areas is evolving rapidly.
  http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA
  
  Sjogren’s Syndrome
  
  Sjögren’s syndrome is a chronic autoimmune disease in which a person’s white blood cells attack his or her moisture-producing glands. Today, as many as four million Americans are living with this disease. Learn more at our About Sjögren’s Syndrome page.
  
  The most common symptoms include dry eyes, dry mouth, fatigue and musculoskeletal pain.
  
  Currently, there is no cure for Sjögren’s syndrome. However, treatments may improve various symptoms and prevent complications. Prescription medicines for dry eyes and dry mouth are available. A number of over-the-counter products may also be used to alleviate different types of dryness. Immunosuppressive medications are also used to treat the serious internal organ manifestations.
  
  http://www.sjogrens.org/home/about-sjogrens-syndrome/patient-information
  
  I understand and appreciate the concern but there is something’s you can’t fix, and no offense most of you emotionally can’t not handle or fully comprehend the information I am giving. I had a choice the day the doctor’s said Stage IV I could tell you basically nothing like my mom or tell you some. For the mere fact that many in the family where shocked when my mom passed because most thought she had beat cancer, she didn’t she learned to live with and hide it very well, she was a very private person especially when it came to what she was going through. I took a lot of flack being the one that was primarily with her the last six + months and not disclosing what I knew but it was HER place not mine just like it is MY choice not my sister what information I give out.
  Living with her those last six months, then the month leading up to her death has more then prepared me for my fight. That and me keen ability in using Google I am able to find information that I need.
  
  My crazy personality has helped me immensely which even the doctors and nurses comment on; I am not the normal patient of gloom and doom. For those that have grown up with me know that I just like every other Parker doesn’t express emotions very much so do we really think I am going to talk about cancer over dinner or over the phone. Really when have I EVER talked on the phone, that was the one problem that my parents didn’t have, why because I kept to myself when I wasn’t busy with dance, softball, soccer, basketball, Jazz, Gymnastics, Tap, work, building my train set and school. Those that I went to school have memories of me being quiet and shy in school which was true until about Junior year in college, and yes I hear the laughter coming from the NC State campus primarily the athletic buildings.
  
  To soothe the concerns of some I want mention any names I TALK to people that are in the same boat as me, people who can ANSWER my questions. There are several sites I visit that are relate to my dx, type, age and etc where I mainly read, research, ask and answer questions. This is the age of technology I am always looking for different ways to treat my pain and flare-ups. Like I said at the beginning of this post there is no road map for me, like my doctor said in the beginning you’re not supposed to be 29 and Stage IV and to add insult to injury I get diagnosed with Sjogren’s Syndrome. This is making it very difficult for the doctor’s to figure out which one is causing my pain and discomfort because its either one or both causing the issues.
  
  I am not going to sit at dinner and discuss Cancer or my Sjogren’s, I randomly may bring it up or discuss it when asked how I am doing. But what many of you are not realizing is until you actually go through it you’re clueless, and there really is no benefit to either me or you. You will only freak out or stress, oh I will pray for you, you can’t offer any solutions to the problems or tell me what can and can’t work for what I am dealing with. That is why mankind invented the internet, this is the age of technology and I am not my Mom if I was you wouldn’t know a damn thing because unlike me mom, I don’t need my daughter to type up my list of symptoms or research them on the internet and show me how to look up things.
  
  I saw the effects of not allowing some sort of information to concerned family from my experience with my mom’s battle; this is why I started the Carebridge page. The site is so everyone will have the same information instead of be spread by word of mouth and stuff being taken out of context. Like my sister I have been a caregiver to a person with Stage IV so I understand that side both side of the coin. Even then many questioned decisions my sister and I made but until you have been through both (patient and care giver) u truly can’t to really relate with what a person goes through both emotionally and physically, that and the biggest thing is EVERYONE is different no two cases are alike.
  
  I understand everyone wanting me to come to down to coast to visit, when I get a chance which will be in the month of June I will come down for at least a week, this is not set in stone. What many need to understand is that it isn’t easy for me; routine is the biggest thing especially with Sjogren’s. Lately fatigue has been one of my biggest problems traveling takes a lot out of me and sometimes it can take up to a week to get back into a groove. I literally have a bag of medicines and lotions that seems to get bigger after each doctor’s visit.
  
  I know how fast the rumor mill goes many know I have been having issues with my eyes and light sensitivity. I have had several appointments with different specialist checking and ruling out things. Other symptoms have began flaring up periodically but really hit this weekend, which led me to ask my ONC a question, out of all my scans have they ever done my brain? I have had a full body bone scan so we know as of two months ago I didn’t have any bone mets in my skull. With the addition of headaches and nausea, plus the fact of the upchucking over the weekend, means I get yet another scan an MRI with contrast of the brain. This one could be very interesting, I think I am going to get a copy of this scan so Carrie can hanging up next to mom’s full body scan we get as Christmas presents one year. I know what some of you are thinking, but you have to realize our family takes photo’s of the open caskets at funerals. When you are from two very large families that in turn had large families funerals become another family get to together to hash the good times and to see everyone.
  
  In conclusion, god I feel like I am writing a damn term paper…lol…There are time’s I will go off the grid and hide the fact I am on facebook, because I can…….I problem can tell exactly who is going to basically freak over the post but SHIT HAPPENS, take a chill pill there is nothing you can do or say, if it makes you feel better to pray, or whatever gives you comfort go for it, like I said I understand and appreciate everyone’s thoughts and prayers, everyone has different coping mechanisms but some really need to grasp and respect the way I deal with my treatment. As I said before my sister gets 99% of her information from the post just like the rest of you, yes she is back in Raleigh, that still doesn’t change the fact that 99% of her info comes from this page.
  
  
  

• Saturday, April 28, 2012 9:56 PM, EDT

  Its official solid food are out with an exception of seafood (non fried), looks like smoothies, those buddy packs I found and shakes, chopped clams in a can (my dinner and snack for the last 3 months). Lack of salvia means the food is getting stuck and not going all the way down, up chucking twice in one day is enough for me. With an already beyond picky taste buds and stomach that and tired of trying to figure out what is going to stay down means Strawberry Ensure here I come.
  
  

• Saturday, April 28, 2012 1:05 AM, EDT

  The hardest part of fighting for your life is not only with the disease but there are unseen side effects, swollen joints, random pain, weakness, and fatigue among many others. Like the phrase don’t judge a book by its cover when you have no idea what is on the inside. As of now I have a full head of head, I still work full-time and by all appearances I look healthy, but that is far from the truth. In order to put a full days or close too takes the majority if not all my energy, a day at work for the most part keeps my mind off the disease and gets me the exercise & movement needed to help keep with the sjogren’s.
  
  When I get home I immediately go downstairs to turn on my lamp, tv, & surround sound. Then I go back up stairs to my dinner which is normally something small because I am simply not hungry but have to eat. I make my way downstairs, sit my food on the tray next to my lazy boy, grab my tickle blanket, use the bathroom and sit down to relax for the remainder of the day. I force myself to stay up as long as possible till I can’t keep my eyes open anymore and I crawl on the sofa. At 4am like clockwork I wake up to a achy body grab the cell phone and my tickle blanket and crawl in my bed to sleep the reminder of the night. Since soccer season is finally over that means another 4 hours of sleep.
  
  It is common knowledge that I detest talking on the phone and apparently because I don’t answer a phone call after 10pm, 1010 and 1015 that apparently I am not talking too any one………..so goes the rumor I became a aware of…………..yeah I haven’t posted in a couple days because I have been busy, between work and doctor’s. I am already irritated because random numbers keep calling me especially when I am trying to sleep especially when I got no sleep the night before, the fact I am exhausted. I am also the type of person that really isn’t any to chit chat or shooting the breeze on the phone, I prefer my quiet time watching tv, reading, playing games, writing, it is time need to relax and recharge.
  
  People need to stop making assumptions or trying to come up with reasons, I truly realize why mom didn’t say a damn thing. And no I am not pissed at anyone but people need to a freaking chill pill…….It is not hard to read that I already have a lot going on in between doctor visits and work…my free time is precious to me…I don’t need the extra stress of people making crap up that causing someone else to have to apologize for texting me, because they were unaware I wasn’t talking to family members..WHICH IS NOT THE TRUTH……..
  
  STOP making assumptions and spreading unfounded rumors remember one simply thing I WILL NOT ANSWER PHONE CALLS plan and simply I hate talking on the phone, email or text and I will answer back when I have time or feel like it….and don’t call my sister to ask her to call me or call her to talk about me or ask what’s going on SHE KNOWS NOTHING……………….If you want to know how I am doing at the moment you can ask Noland who will tell you I am fine…..he just saw me on Thursday night during his monthly doctor’s appointment and stay at my apartment, the truly only person that understands what is going on…cause like me assumptions are made because he hasn’t been outside in a couple of days so as with me peps make assumptions…..as usually we made a trip to Applebee’s and returned home to watch NCIS till bed time.
  
  When I get a chance or feel like it I will update but no more asking my sister about me, probing for information, when I choose to update I will. I understand the need to reach out and trying to help but you guys have got to realize that I don’t need that hand at the moment……I have a job that consumes a lot of time and the rest of my time is resting or dealing with medical shit……..We also know that I like quite time alone in my own little happy world………when I don’t get that I am not happy…….and before peps start another rumor no I am not pissed at anyone, I just need people to relax …..
  
  
  
  

• Friday, April 27, 2012 9:13 PM, EDT

  Finally a weekend to relax turning off cell phone tonight so I can get uninterrupted sleep, than a Saturday of doing nothing and whatever I feel like. Finish my Baywatch Marathon, yes I said Baywatch, maybe stroll to Flea Market for some exercise then back to doing nothing. Hoping that a long restfully weekend can put a dent into the fatigue that is plaguing my body, from two competing diseases cancer and auto immune disorder. Also have to run to Target to see how much the latest round of prescriptions is going to cost me, another month of way too much medical expense. On top of that trying to find foods that my body can stand, cause the way it looks I am allergic to some preservatives what kind it will problem be a couple of months before that one is figured out. Found these little packs that looks like space food call Buddy Fruits not too bad, burns the tongue some because of the acids of from I am guessing the apples. Next up trying one of those all natural fruit shakes/drinks from California………..
  
  

• Tuesday, April 17, 2012 11:22 PM, EDT

  I seriously need a body transplant, this fatigue crap is really becoming a pain in the ass.  All the tears are gone, seriously my eyes are dry beyond belief if I wanted to cry I couldn't.  I get to see the wonderful Allergist peps next Wednesday morning after I get to hang out with ENT people.
  
  At least all this research explains some of the other strange symptoms I have been experience, and why does it have to be entirely on the left side of my body.  I don't think the Oxy is going to work much longer at least it still knocks out the majority of the pain.  But trying to figure out what is setting off my flares, some of them I believe is a result of allergies.  Considering I am the patient that had the fast reaction to Taxol ever seen and that was with two eye drops of the drug.
  
  I am wondering if there is something I can add on top of my mattress to see if that helps the body out.  Some days my body isn't aching when I get up other days it is miserably until I start to move around.  Which is the best medicine for the body movement, but my body doesn't agree with that all the time.  Going to check out the stores in CrossRoads tomorrow after I finish packing up the track team for ACC's.
  
  On my list is the black out curtains for the bedroom, another type of egg crate for the bed, more body pillow covers, eye drops I am not allergic too.  I am seriously getting sick of being sick, I am still waiting for a vacation for being sick but unfortunately I don't think that is in the cards. Oh well you can't change ur fucked up genes unless the aliens come and beam you up...lol..or get bit by a lycan (werewolf) or become a vampire which at this point I wouldn't mind.  Well back to my research of different reliefs for all the problems my lovely immune system is causing....I might actually have to ask for more Chemo...and no I am not kidding cause on Chemo I only had a sinus infection. 
  
  Hey I can live with the bald head and no hair anywhere, maybe I get Adidas to pay some money to paint there logo on my head and maybe State will give me some more money to put the Block s on the other side of my head, hey it can be a tax write off donating to a needy cause...lol  On top of that no shampoo, razors, shower alot quicker cause u have no hair to wash, roll out of bed and your good to go.
  
  
  

• Monday, April 16, 2012 8:25 PM, EDT

  So 5 to 1 it is going to Sinusitis becasuse i can press my Frontal Sinuses on the left side and press down then pooof.... green buggers go into my nose and then I can pick em out.  I get to spend $70 more bucks on April 23rd.  That and the fact my sinus have drying down the back of my throat since chemo and hasn't been doing that in over two months is probably another sign. Funny thing is I have been doing everything that the internet says to due with sinus, I have a humidifier and I am not congested nor do I respond to antihistamines or stupid decongestants NC State Health Clinic figured that one in out in college.
  
  We have also learned that Heidi is allergic to the DAMN eye drops with preservatives in them and what ever the HELL is in the dye the eye doctors use to check the dryness.  Needless to say this was learned by trail and error, my ONC has emailed the Rheumatlogist since his office is with the Allergy peps.  So apparently we are going to have to get an allergy checked.
  
  And I still get to wear shades all day so I don't have to squint my eyes which add even more pain to the head on top of what the sinus are doing.  Move from area to area that has different lighting really pisses off the eyes and my whole equilibrium off.   With the shades on I don't have to squint the eyes. Oh well another week or two to figure every thing else out.
  
  
  

• Thursday, April 12, 2012 7:36 PM, EDT

  Apparently I am vampire

  Like anything if u need to get in a clinic that usually takes 6 months, just get the Cancer Hospital to schedule and damn if you can get in and out in a flash. What did I learn?
  
  Apparently I am very sensitive to light…..Really no kidding smartass, so I learned nothing from that appointment the Rheumatologist and Onc thought I may have scratched the cornea going for the most favorable from the symptoms I had, well NOT according to the eye doctor
  Accroding to whatever his name is the eyes looked fine, but I need to increase the use of my eye drops, and according to the computer from the tests ran last summer my eyes are very light sensitive. I guess that is why I am always squinting in most every picture taken of me. His thoughts were a combination of pollen, severe dry eyes and maybe working on the computer is enhancing in discomfort of my already light sensitive eyes. He told me to increase the use of the eye drops that I could use more that what it says on the bottle, and use a gel for night. To me I feel no change in the eyes after using the drops, but apparently it must be helping some along with the plugs in my tear duct. He didn't dilate the eye but he said the optic nerve looked fine to him.
  
  So basically from what I got there isn't really anything to do about the light sensitivity but to continue what I am doing wearing shades all day, and from what I learned light sensitivity apparently runs in the family.. At least that is what the two culprits my sister and Jeremy, they have a little issue with light sensitivity, at least I aint’ got to wear glasses like them.
  
  Tonya I guess its official I am a vampire dang it, I would rather be a lycan (shape-shifting wolf) at least then I would be fast. My eyes are glad to be back home in my dark apartment they were really pissed after the eye doctor numbed them this time with yellow dye instead of blue. I just emailed my ONC cause apparently the doctor after being told by me and the cancer hospital to page my ONC he didn’t. Because as soon as I hit send my ONC hits me with an email asking what was said. Honestly he rolled his eyes and was like I will forward it to your Rheumatologist, hello dumb ass I just told you that my ONC and Rheumatologist have been talking and she is suppose to call him after you page her because I have CANCER and Sjogren’s and they are trying to figure out what is going on and the next step.
  
  We know from the bone scan in February that I have to METS on my skull, I had a CT scan of my sinus in early 2011 but that was done off UNC Campus. I had brought the disk with the scans anticipating that it may be needed; problem was UNC computers will not allow you to put a disk in, so I am going to have to try and to email the scans to my ONC. So $100 bucks later and a half days work lost and we have no answer, except I look cool in shades and apparently I have a good tan on my face according to all the nurses.
  
  Now we are back to Sjogren’s or Cancer, is the Sjogren’s attacking the nerves in my head since my ears have been also been involved in the latest attack. Or could there be cancer mets on whatever part of the brain deals with imagery input particularly the one that allows your brain to process for example: when you are typing in Microsoft works and instead of using the print view you are using the grid-line view, whatever part of the brain distinguish the words from the background lines.
  Because that right there makes my left eye and temple start to hurt after a short period of time. The other issues I am having is similar to an inner ear infection but I don’t have that, It is a sad day when rolling on a stool makes u sea sick, so apparently my equilibrium is also jacked up.
  
  So I don’t know shit, other than my eyes and brain prefer a dark room, now waiting to see what the ONC and Rheumatologist want to do next.
  
  
  

• Wednesday, April 11, 2012 9:13 PM, EDT

  Photophobia

  
  Today’s new word in Heidi Medical Encyclopedia is Photophobia. Yes I know what you are thinking another big word no one can pronounce especially me and I know the next question what is this?
  
  Photophobia:
  
  “Sensitivity to light is the inability to tolerate light, medically known as photophobia. In someone who is light sensitive, any type of light source (sunlight, fluorescent light, incandescent light) can cause discomfort. Photophobia typically causes a need to squint or close the eyes, and headache, nausea, or other symptoms may be associated with photophobia. People with light-colored eyes are more likely to have sensitivity to bright light than those with darker-pigmented eyes. Sensitivity to light is caused by a number of conditions that affect the eye as well as conditions that affect the entire body.”
  
  http://www.medicinenet.com/photophobia/symptoms.htm
  I have been talking to my ONC via email, at first she thought it was simply side effects from the Plaquenil. That theory was effectively torpedo when I told how much I had taken and when I stopped which blew that theory out of the water. Both her and my Rheumatologist agrees to stop the taking the Plaquenil which I already did until they figure out what is going on.
  
  If you haven’t been reading my previous last week the day after I got my port flushed I started to have issues with my eyes. I have had this once before I believe before Christmas where I would get pressure and sort of a headache from light. The pain would subside when I put shades on it only lasted like 2 days last time. Unfortunately this time that is not the case, and like usually I had been putting off going to the eye doctor which I can no longer afford. Delma is working as we speak to get me into the eye clinic. Tomorrow I get to make another trip to Camelot (UNC Cancer Hospital) so they can run some tests to figure out what is going. Then the round table of experts (knights) will sit around trying to figure out how to free Excalibur from the rock (Heidi from Pain)
  
  Symptoms:
  Pressure forehead
  Pain behind both hears
  Sudden drop in hearing
  Tinnitus
  Nausea
  Dizziness
  Sea Sick (aka Vertigo when I took my sun glasses off for a second to look at a piece of paper and put them back on)
  Carpal Tunnel Symptoms different locations but both wrist
  Sharp pain in left breast same spot that has a knot that I had MRI last month
  Sharp pain in liver (have it off and on always comes back clean)
  Ear Pain (had same symptoms before ENT always says nothing wrong)
  Upper back and lower back sore especially when I wake up in the morning
  Severely dry eyes (eye drops do nothing)
  Dexterity issues (dropping things)
  Burning eyes
  Tingling and Numbness various locations on face
  Blurry Vision
  Various aches and pains
  Hands swollen (naproxen not working)
  No Appetite (yeah I have had this problem since 2008 pre dx)
  Hands and elbows flaring up
  
  In summary all light artificial and natural sunlight is creating havoc for my eyes. At its worse I even have to wear shades while playing on the computer or watching TV. I have been on the same schedule for almost 3 months same time to bed same time getting up due to my Sjogren’s and the fact fatigue is sadly part of this disease. During this time I have had bouts of inability to fall asleep often rotating from recliner to sofa to bed. I haven’t had any problems reaching REM so there shouldn’t be any reason for me to awake and feel like I haven’t even slept. The run over feeling often happens when I sleep on the sofa all night or half the night. The last two nights are the first I have slept entirely through the night without waking up in the middle of the night. Even with 7 hours of sleep my eye lids feel heavy but I am not sleepy and my body is achy and covered in bruises.
  
  As of three days ago another flare up decided to join the party dry mouth to the extent of cotton mouth. Sipping water as recommended by the “experts” makes it even worse but I have no choice I need fluids. Right now I feel like my head is inflamed and about to exploded from the pressure of the vice. My hands also felt left out so they are now chaped red and burning, not to be out done the elbows have joined the party. One possibility on the table from the ONC is sinus infection; the Rheumatologist is saying Inner ear infection. My mind on the other hand goes to a darker place something that both my mom and I had before our originally cancer dx inner ear, vertigo symptoms. Then my mind goes to the symptoms she had during the six months she lived with me in 2005, makes me wonder if she too may had Sjogrens.
  
  This is the one of the things that really sucks two diseases having a tug of war not knowing which one is causing the trouble. Not only do you have the anxiety of stupid scans every 3 months to tell you whether or not you’re going get ur head shave, but also having your immune system constantly attacking your body. Is it sjogren’s or Is it cancer? These are the days of your life.
  
  
  

• Monday, April 9, 2012 9:26 PM, EDT

  All I want to do is read my books

  Not a happy camper, can't read my book after 3 pages the eyes go blurry even after putting the eye drops in.....Have no choice now but to make an appointment for as soon as possible for the eye doctor.
  
  I had to wear shades the majority of the day and only had half the lights on in the equipment room,  Which we have decided can stay that way for the rest of the semester.  I know what the kids where thinking...hangover..when they saw me tired of explaining why so we are just going with Heidi is hungover for the remainder of the week...
  
  The Plaquenil is no more since it caused my psoriasis on my elbows flare up, and after I started taking I get a major flare up starting with my eyes and moving on my mouth.
  
  This time around I am paying more attention to what happens leading up to the flare-up.  I notice that it feel like my head swell (Alright no smart ass comments about my ego getting to big for my head) but seriously I was wearing a hat on Tuesday and it was loose, put hte same had on Thursday and it felt like it was constricting my head.  Sunglasses had the same feeling normally I don't feel them on my head since Thursday they too felt like they were too tight.  Some of the symptoms I have not had in the past, like the temporary hearing loss on Thursday night, they pain behind both ears and the fact it felt like someone was squeezing my head trying to make it pop.
  
  Now my eyes are getting blurry really....the periodic numbness on the nose and check bones is also getting irritating.  From reading the Sjogren's website it looks like my nervous system is the latest site getting attacked by immune system..at least I hope it is the Sjogren's becasue I don't want what is behind door #2....
  
  Why is it that I have to be the opposite...sjogren's site says sip on water through out day to help with dry mouth....yeah that for me makes it far worse and dry's out my mouth even more....only my body would prefer a Mt. Dew which makes my dentist clench her teeth.  Looks like I am going to have to call in for an antibiotic shortly if the dry mouth continues.
  
  
  

• Friday, April 6, 2012 11:58 PM, EDT

  Intense Flare Up

  It is still amazing to me when I talk to women who had early stage breast cancer decades ago or husbands/family of those that just got dx, and are confused why I don’t “Chemo Pills”. They have no idea how much has been learned just over the last 10 years that there is different types of cancer, like mine Triple Negative Breast Cancer. They don’t understand that estrogen doesn’t play a role in some women’s breast cancer. Or the fact that some people cancer can caused by genetics’ like mine, royal fucked due to inherited screwed up defective genes. I also get the question with look of perplexing that I am not in treatment so why I have pain or need pain medicines…
  
  According to statistics cancer patients average age is 61, “From 2004-2008, the median age at diagnosis for cancer of the breast was 61 years of age3. Approximately 0.0% were diagnosed under age 20; 1.9% between 20 and 34; 10.2% between 35 and 44; 22.6% between 45 and 54; 24.4% between 55 and 64; 19.7% between 65 and 74; 15.5% between 75 and 84; and 5.6% 85+ years of age.
  
  http://seer.cancer.gov/statfacts/html/breast.html
  
  I would be in that 1.9% group and on top of that I have Stage IV which is even rarer, and as the doctors said there is no protocol because you’re not supposed to be 29 and Stage IV. Being young means the doctor’s will be more aggressive in treatment, the reasoning behind it is we are typically healthier so they throw everything including the kitchen sink at the cancer. Problem is there is has been no research on the long term effects of this aggressive treatment on young adults. Add on the fact that in less than 2 years I have had nine, yes nine surgeries, on a body that had already been subjected to 7 months of Abraxane every 3 weeks, 3 months of Adriamycin, aka the "Red Devil”, then I had a double mastectomy.
  
  For my cousins I have the video of that surgery, which will illustrate graphically what is done in this surgery. It litteraly shows my entire chest opened just like on NCSI when Ducky is weave a story as he opens up the chest of the latest victim of foul play. Your high school age kids more than likely will see it since it is a part of a science model that the UNC Planetarium does in its Mobile Science Lab about DNA and genetics and BRAC 1. Then I got 31 days of radiation followed by more Abraxane at a higher dosage than the first time around, while at the same time getting my implants filled. The filling of implants involved, getting a set amount of saline into a port that filled up the implants that where positioned behind my pectoral muscles, basically stretching the skin. I had to stop before we reached the originally size I requested, I year later I would have to get them switched out to Silicones implants because of the tightness and strain on the radiated breast side and the fact silicone feels more natural than Saline.
  
  Speaking of my Pectoral Muscles apparently they are still a hot topic, I was told by the doc I have the most defined pectoral muscles in a female that they had ever seen, damn I could have been an Olympic swimmer, lol. I guess all those years of softball and working in Wal-Mart lay a way and receiving department paid off.
  Finally I was given a break from the torture only to have be short lived, as an even bigger curve ball was sent my way 3 months later. Not only do I have the BRAC 1 gene, I have several others which decided to activate once my immune system became active again and the incurable auto immune disorder Sjogren’s syndrome joined the party.
  
  Now I fight Chemo like symptoms on a daily basis, brutal fatigue no matter the amount of sleep or rest, chemo fog/brain freeze, inflammation of joints, a stiff body that takes a few hours to work itself out in the morning, degenerative arthritis in both my feet and left knee, light sensitivity that comes and goes, dry mouth aka cotton mouth, sometimes so bad that my throat is dry, dry burning eyes, just to name a few. Now over the last two days something new is starting which I am not exactly sure how to explain. I will have to see if I can shake it or if I need to send an email to the Doctor. I just figured out what might be part of the problem, apparently I am having a very bad flare up. I am now sitting in the dark, the TV light doesn’t seem to cause my head to ache between my temples.
  
  I have had to decrease the light on the computer and I am typing wearing my Oakleys. I think the Oxy may be helping as well as well not sure what is causing the pain behind my ears that started sometime around Thursday and a painful ache in the liver area. It sort feels like someone is squeezing my Eustachian tubes, also work up this morning with a serious decrease in sound, and I have been having trouble hearing my phone especially when it is in a holder. It is also becoming more difficult when trying to understand those on the other end of the phone with those who primary language isn’t English, those who mumble and when the reception isn’t very great.
  
  A friend from the message boards I read on a daily basis sent me the following http://www.sciencedaily.com/releases/2012/04/120401134939.htm
  I forward it to my doctors, who are discussing whether or not to switch me from the Naproxen I am currently on to the drug listed in this report. It appears that controlling my inflammation could help to keep me dancing with NED (No Evidence of Disease). The Naproxen I have found is a necessity I stopped taking last week because it was causing too many bruises, which I had done in the past with no problem to get rid of the bruises. Only to find that was impossible now the inflammation was unbearable and the Oxy could do nothing, I took the Naproxen and 15 minutes later the inflammation began to slowly subside and within two hours I was feeling better.
  
  Well it looks like my plan to sit on my patio tomorrow to enjoy the sunshine and a drive to Wilson may be shot to Hell with this Flare up. This is one of the worse I have had usually only one area flares, this time it started first on Wednesday with an extreme attack of my salivary glands, followed by burning irritating eyes that eye drops can’t soothe, chemo/brain freeze, unbelievable fatigue even though I am fully rested all converging on me over a short period of time.  My muscles are aching, burning and tensing up no matter what I do exercise or no exercise.    I couldn’t believe how exhausted I was from my short trip to UNC to get my port flushed it literally zapped me of all energy. I was useless when I got back to work; luckily it is Easter week so it was slow and I had already issued the uniforms just had to wash the stragglers uniforms.
  
  It looks like I may be barricade in my Den with my bedroom and playroom door shut to keep out any sunlight and the curtains upstairs closed to keep out all light. I am not joking when I say I am sitting in the dark typing on the computer wearing shades. I am also reading a book by flash light, kind of irritated because I can’t find my book light with clip. Also still can’t find that damn remote that got launched in the wee hours of the morning. I will still need to get out for exercise so I am hoping I will be able to take a trip to the Skate Rink to get some exercise in or I am going to be in a world of pain
  
  Hoping tomorrow brings a day of limited to no flare ups in the morning hoping to finally get a restfully night of sleep.  I have been reaching REM so that isn't the problem, but I am still waling up like I was actually doing all the running, flying and fighting in my dreams. Too much time in bed is worse than not enough time, if only the clock can be moved back or aliens could abduct me and give me a new body.  Hey Tonya one can always dream, lol. Watching the latest reality shoe North Woods Law, Game Wardens in Maine, may actually learn some information for one of my many stories I amwriting

• Friday, April 6, 2012 5:54 PM, EDT

  4/5/2012
  Confused
  
  Plaqenil or not, according to the latest research it looks like we need to keep my inflammation under control to keep my cancer at bay. I decide to take the first Plaqenil pill till today it is suppose to take upwards of a month for effects to be felt, so why after about an hour that my tendons start to hurt first the pinky on the left hand all the way up the fore arm, the tendons in the right foot, is it just a coincidence?
  
  I just took another pain pill to see if that knocks at the pain, the nerve endings from the various spots of surgeries are slowly starting to wake. For some reason the port area is just straight up feeling award, thank-full one of my favorites nurse accessed it today to flush it absolutely no pain putting it in or out. I may need to drink an Ensure Shake tomorrow to go along with the vitamins to see if that helps the sleepiness. My body is in a tug of war the eyes desperately want to close but if I give in it will throw my schedule off, I seriously think I could sleep through an entire weekend. The problem with that is that I will be in pain which could take hours to days to get back under control.
  
  Wondering, Pondering, Questioning
  
  My how times have changed those that had the six letter word that started with a C was taboo. It was quietly whispered until some marketing guru decided to make money off it, aka Pink October. Breast Cancer is openly talked about with support groups, walks, other events if your Stage 1 thru 111c but there is the new taboo the “M word” Metastatic aka Stage IV. The incurable but treatable Stage, life can be extended yet your still terminal or whatever you want to call it. Local Support groups? Um NO, Young and Screwed with Stage IV…ummmmm No, There is solace in several online sites that provides a place to discus treatments get advice, share information, that is how I found out about a study that could affect how my doctors treat my auto immune and cancer. There is a young cancer group out of Durham Stupid Cancer problem is a lot of their events just don’t seem to fit into my schedule.
  
  It seems like every other day more and more fellow metesters I have met online are losing their battle, two around my age dx after me have lost their battle some just over a year after dx. Both just recently got married one had a kid now they are gone….Many of us find ways to escape our reality or as some put it living in blissful denial but many times we are shocked back into reality either from pain or bad scans…Many long to be dancing with NED or enjoying the Stable Boy….For those who are confused NED stands for No Evidence of Disease and Stable means the cancer isn’t really shrinking or growing it is the same from scan to scan. I find work helps me escape but sometimes the reality sneaks in to jumble up my brain, and the reverse happens when I am at home trying to keep everything separate is often tiresome. As I sit here and type I have pain shooting up the side of my left hand and in the middle of my right wrist, is it the Plaquenil?
  
  
  4/6/12
  OMG the craziest thing happened at 1231am, I was fast asleep in full REM dreamscape, in the neighborhood some kind of war was going on I remember fire balls been flung on the road where Noland, Hubert, and Robert Stone land intersects. Then BAM my eyes pop open as the box with a piece of furniture that was lean on the wall was falling at my head, some it moved and hit the trunk causing the surround sound remote to be launched……….damn shit woke me the hell up took me a hour to go back to sleep…Oh and I still can’t find the remote damn it….and it was a good sleep because my body didn’t feel like it had been beat all to hell…………
  
  When I finally rolled out of bed still exhausted and sleepy wanting to sleep but not being able, I found something to nibble on and relaxed with the tv on ESPN. At 9ish I rolled in to work to put out the last uniform and wait for my team to finish departing for track meets. Not feeling so hot for some reason my head doesn’t feel right hearing had decreased, I can barely hear the phone ring, it feels like I have an ear infection but I know I don’t, pressure on both temples, warm but no temperature, and know I have pain coming from the ribs under my implant on the right side, and I am doped up. Though I am experimenting with taking another Plaquenil pill, suppose to take two a day, not. Trying to see if the same thing that happened last night happens again with the tendons, in my hands/wrists.
  
  Escaping
  I am 25% into one of the books I got with my Barnes and Noble gift certificate (thanks Rene, you got me four books), depending on how my eyes corporate I should have it read by Sunday, then I will be pissed because there is more than likely going to be a book 3 and I am going to have to wait 6 months to a year. It took me forever to find the book in the store because it wasn’t with the other teen books it was hanging out with the Harry Potter books in the kiddie section.
  
  Hoping I will have the energy to drive to Wilson on Saturday, we will see tomorrow. This weekend I plan on relaxing doing some reading outside, the nurse complemented on how tan my face was when I gots my port flushed, a little skating, maybe some Sims, and reading some books. I just need to escape reality, maybe see a movie on Sunday either Mirror, Mirror or Hunger Games……………..
  
  
  

• Tuesday, April 3, 2012 8:09 PM, EDT

  http://www.sciencedaily.com/releases/2012/04/120401134939.htm
  I got this link from one of the girls I met on one of several forums; also saw it on facebook as well. Apparently my inflammation may be linked to my Stage IV cancer and to keep me in remission the doctors need to keep my inflammation under control. Even though it was by a UNC doctor, my doc hadn’t seen it yet and was very intrigued by the results. She is going to talk with the doc in charge of Clinical Trials to see if they should change my currently prescription of naproxen to celebrex. I have a feeling I am about to become a guinea pig again, she seemed a little to giddy.
  
  Tomorrow I get to make a trip to UNC to get my Port Flushed, as Sandee put it, I was way past the time, so hopefully it will not take that long and the port will be cooperative. I think my body is sensing a Holiday is approaching and teams are not practicing but damn it I still cannot fall asleep in my bedroom. My night consist of falling asleep in lazy boy, move to sofa, wake up between 12am and 2am and move to bed to pass out. Sleeping in lazy boy is comfortable, sofa makes it feel like my body was hit by a big mac over and over again, and my bed is comfortable. I think I need to put a bed in my den that can also be a sofa, maybe then I could sleep. I have even got to the point where I leave the surround sound on and cut the TV so I can fall asleep and when I move to my bed I leave the door open so I can hear the TV, yeah I know I am weird.
  
  
  

• Monday, April 2, 2012 6:16 PM, EDT

  Long weekend in the book thought I would be sorer for the amount of hours, but actually the Relays kept the Sjogren’s in check. Still couldn’t sleep all week including Saturday night, so I got about 3 hours of sleep after working 10 hours on Saturday. I ate breakfast and went out to the softball game to throw out the pitch and hope that sitting out in the sun would knock me the hell out when I got home.
  
  Went to Barnes and Nobles after the game and used that gift certificate from Rene to get four books and go went home, where I ate a slice of pizza at 3pm and then………………..bamm I wake up and it is 630pm. I pop up all confused trying to think where I am at or where am I suppose to be, am I late for something. Struggled to stay up along enough to eat, I then crawled on the sofa and out again until I wake up confused, then off to my bed to wake up again a 4am confused then went back to sleep.
  
  Hopefully this week will be short and uneventful, need to wash track uniforms tomorrow after I get to sleep in because men’s soccer has a game Tuesday night, swing down to Reynolds to assist them in their inventory and get an order approved by one of the admins. I have a feeling all the work last week is going to catch up with me at the end of the week, according to the calendar I get to sleep in on Thursday and Friday. At this rate I may sleep the entire weekend, play some Sims and read a book or three, and go rollerskating. I am hoping this will help keep the pain and inflammation of the joints and yes I am fully aware it is Easter weekend….and No I am not driving down to the coast.
  
  Why? Simply my body isn’t what it use to be, especially when you receive mailing from AARP, I am not kidding, traveling more than 30 minutes will have to be for an extended visit not a weekend visit. I am not up to another month and half of walking pneumonia just to go for a weekend, nor can I afford it, saving my money for vacation. This weekend starting with Thursday is HPT (Heidi Play Time), with a little bit of house cleaning involved.
  
  On the medical side, I need to schedule an appointment with eye doctor, waiting on Sandee to make an appointment to get my Port Flushed out, since it is past time, the Doc has her checking on this as I type. And I thought I was going to have one month without doctor appts….NOT…..There is only one on schedule for May and three on tap for June. At least this time the scan isn’t on my birthday like last year. I think my eyes are getting worse, I have determined that sun helps even though the “experts” so sjogren patients should avoid sun light. But we all know my body does the opposite of what the “medical experts” say, the glands in the mouth haven’t been acting up but I have absolutely no moisture in my eyes that feel like they are hot or burning. On the bright side the pollen seems to long no have any type of affect on me and the sinus haven’t been acting…quick someone find some wood.
  
  
  

• Thursday, March 22, 2012 8:56 PM, EDT

  Sjogren's is pissing me off

  If it wasn't enough that as a Stage IV Breast Cancer patient, but a young one on top of that having to deal with managing pain from that lets add a disease that is not only attacking my eyes, nose, partoid glands but my joints, first my hands, my feet, my left knee, now my elbows. As stated in the dvd I just got from YSC, we have to Budget what Energy to have to sometimes complete the most simply of tasks
  
  Always dealing with the "Fear of Time" a clock ticking away as you wait for the next shoe to drop.  You find ways to distract your self for me its work, Sims, Play Station 3, reading, coloring, drawing or writing. But some of these small simple pleasures also can casue some pain and frustration.  I got the dvd to show to family and friends so they can get a better understanding, also finally found that dvd of my BMX surgery.  Yes I have a dvd of my surgery, it is being used in an high school educational program run by the Planetarium.
  
  Trying to read a book but your dry eyes make the words on the page blurry, having to enlarge the computer screen, bruises covering my body from the Naproxen.  So I decided not to take my Naproxen yesterday and today, bad idea as I was sitting here typing pain radiated from my elbow, Sjogren's has found a new joint to attack.  The Oxy wasn't working becasue it was inflammation so I had to take the Naproxen. luckily it didn't take long to for it to relieve the inflammation that is in an all out attack.  Today I would have loved to be able to shot hoops with the rest of the staff as we took a break, but I have limited a limited energy to pull from, which affects every aspect of one's life.
  
  Let me see, I have a routine schedule, actually been able to eat and basically the same time ever day, for the most part going to bed and getting up at the same time. Everything seemed to be going well tell the one night u can't sleep, when u finally do and wake up eight hours later u feel like u got ran over several times from a big rig.
  
  Then you go to bed on time the next night, and still wake up feeling like death and end up falling asleep in your lazy boy, and your still fatigued. Another factor is I am having to wear flip flops right now becasue my feet are swelling and I had blisters on my toes last week so that may be contributing to the tightness in my lower back, which I will be emailing my ONC about plus the pain at around my port.
  
  It is just frustrating when your 33 and not being able to do 1/2 of what you could do just over 4 years ago. Oh well, it will not keep me from doing what of the Hell I want to.  Last two night sleep was good but my body is not happy, I may roll the dice tomorrow and take the Plaqneil and hope not to get the side effect of damage to the eye but I will glad take the side effect that involves weight loss...lol that one I think I can live with.
  
  Doing some online research to get some more ideas of how to better control my flare's especially the fatigue.  Everyone keeps saying can't your doctor's give you something?  I am basically a walking Pharmaceutical both prescription and over the counter items to deal with two incurable disease.  The doctor's are in uncharted waters, and have alreay came to the realization that I am in tune to my body then the most if not all patients.  It didn't take them long to figure this out shortly after my dx and first round of Chemo.  The insight helps if I could just figure out the right combination to put a stop to or reprieve from these flare ups.
  
  Well back to the internet to draw up my lastest battle plan for my ongoing War with Sjogren's and Pain.  Also need to make some appointments for next month.
  
  
  
  

• Monday, March 19, 2012 6:02 PM, EDT

  Inadequate Rest equals painful afternoon

  As I sit in my lazy boy waiting until I can take another Oxy and wondering if the periodic pains around the liver area should be reported to my ONC.  These are the same pains I have all the time each time blood work or scan show nothing.  I also have that same pain on the left side that they did an MRI on.

  
  

  For some reason did not get good sleep this weekend, maybe because of all this excitement and half day days at work because its March Madness and we are finally back it in.   Hey we are after all on Tobacco Road, its March, and Men's Basketball is like a scared religion, a time when everyone says screw work.  It was actually funny as I was sitting in the auditorium watching the game when one of the GA's (graduate assistant) comes in flops beside me, and is like Damn Nicole wasn't kidding the entire department is in here, all I did was chuckle.  T

  
  

  Those of us mostly the staff you don't see on TV that make the game possible like he business office, game ops, facilities, equipment, sports medicine trainers, media relations,  some coaches who weren't traveling, weight staff, compliance, W Basketball Operations, you get the picture.  Since our game was at lunch time we where provided food, unlike the rest of the staff equipment, sports medicine and weight staff had to come in and out as we still had some athlete's working out that needed assistance all though most of our teams had already departed for away matches. 

  
  

  Saturday I went in to work to do laundry and finish up inventory track equipment, that was from like 930am to 1230pm.  Then I returned home and watched basketball for the rest of the day, and attempted to go to sleep at 10pm which was a complete failure.  I ended up sleeping on the couch which basically made my body feel like it got no sleep.  I had moved to my room at about 4am then awoke at 9am.  Got up got some food and then passed out while sitting in the lazy boy, I was awaken by a text from the Baseball Equipment Manager about the visiting team locker room.  Then I realized the time turned the TV on and saw we where winning......It took a minute then I realized if we win Men's Basketball would need the laundry room all day Monday.  So I got up and raced to work to knock out all of the laundry for the Olympic Sports.  As I suspected we won but not before the team tried to give people a heart attack making it go down to the wire.  I was debating on staying to finish the last 2 loads or putting it on overnight, thank-full I choose overnight...why Oh because of the over a 1,000 people that where going to be in the parking lot of the building I work to welcome the team back, if I would have stayed I would have been stuck for a while.

  
  

  Now I am on Google doing some searching to see  what our loveable Mr. Wuf has worn over the decades...since I am the Official Groomer of Mr. and Mrs. Wuf, that I have to prepare next year order.  I will be getting a CD from our media relations/historian but he even chuckled about the horrid suits, shirts, etc Mr. Wuf has worn over the decades.  I am trying to figure out when we started dressing him in uniforms, so far it looks like 1990.  

  
  

  But damn whoever was dressing him before I took over a few years ago should be shot....although those Hawaiian surf shorts worn in the 80's was quite funny but damn the shirt didn't match. and is his name spelled Wuff or Wuf because it looks like we have used both from what I can tell.  Oh well back to my Google search after taking a Naproxen since I have 2.5 hours before the next Oxy.  
  
  

• Monday, March 12, 2012 9:22 PM, EDT

  Scan not Cancer not sure what it is

  I called the # listed on the internet and the scheduler gave me the Dr. Damitz Nurse line so I made a call and had to leave a message.  I also emailed my ONC for to light a fire under the nurse to call me back instead of the standard 24 to 48 hours after u leave the message.  I knew that as TP and I rolled into a 1pm meeting that UNC was going to call, u bet half way thru my phone rings I pull it out and up pops 966 number, yep UNC.  So I slipped out to see what the nurse had to say about the MRI, she read the result saying it wasn't cancer but that is it.  So that means the muscle is knotted up and the muscle relaxer and the oxy really does nothing.  On the bright side when it does hurt it is a brief sometimes dull, sometimes not.
  
  And to answer a question on the pain medicine, I am already taking the max non narcotic for the arthritis & inflammation the highest dose my doctor has every written on top of the narcotic for the pain, then muscle relaxer for the left pectoral muscle.  Its impressive that I can stay awake, if I stop moving for an extended time I might fall asleep all three drugs cause drowsiness.  Which means I have to strategically take them in order to get thru the day with the least amount of pain/discomfort.  As long as I am busy to distract my mind from any pain sensors that my be firing, all is good.
  
  With the crazy month of March shaping up I should be fine during the day with issues popping up at every turn, yeah I thought like every year I had everything I needed for our annual Relays....yeah that it ended today when I discovered my first obstacle of the Relays now I get to spend tomorrow trying to figure out how much more money I am going to need to fix the problem...........hopefully this is the first and last problem becasue the month is short and my list is long...I love having lots to do...you can never say its a boring job or there is nothing to do...
  
  I now some of the aches I have today is from the muscles that are a little po'ed about the exercise they have been getting lately.  Since some of them haven't been used since the exchange surgery.  I am about to crawl back up the stairs for a snack if I can make it out of my chair.  Today I worked way longer than I planned realized the time when I got in the car than Target called saying my replacement inhaler was in, since I lost the other one, so I had to go to Cary to get that and drop a box off at the UPS store so Carrie can finally play her game that I believe Jeremy has already beat a couple of times. I am thinking a Epsilon Salt Bath is in order for tomorrow, maybe it will make the muscles happy, I know it will piss off the skin..oh well back to watching Alcatraz. 
  
  
  

• Sunday, March 11, 2012 9:47 PM, EDT

  First thing on the agenda is to call Dr. Damitz to see about the results of the MRI and also schedule an appointment with the eye doctor.  I think I am have to start where the sunglass all day when out and at work.  The eyes are beyond dry, thank-fully my new car came with tinted windows which is a must for my sjogren's.
  
  If I don't hear back by noon tomorrow, I will email the trusty ONC to pull up the scan and see what the radiologist says.  Right now the body is both sore from playing around with the track storage and as usual I feel like I am ninety.  New pains have arrived which could be from the increase in lifting over the last couple of weeks or is it something else?   I hear some of you make comments about not doing stuff, sorry I have to becasue either way there is going to be pain, and it is worse when I rest and don't do anything thanks to the autoimmune disorder.
  
  By increasing physical activity basically doing things I did before the bmx, getting my upper body strength back has allowed me to get into a better sleep routine which has decreased my fatigue significantly.  Do I need a few days off, Yes but will it be good overall for my body NO.  What stinks more is my body and traveling do not like one another at the moment.  For some reason a trip even to UNC zaps all energy and mood to do anything especially when I go in the morning.  But by the time you get to 5pm BAMMMM energy yeah it doesn't last long crash and burn by 9pm.   Just a few minutes ago I went up stairs, I almost had to do what I did when I was on chemo, climbing the stairs by crawling, Carrie knows what I am talking about.
  
  Not sure what is going on with my feet and my toenails not looking so good and they have decided to swell.  That and the shoes I was wearing yesterday rubbed a spot on my big toe that is not every happy,  Shit hurts enough that on Oxy I still felt it when I put shoes on this morning. I need a jacuzzi in my apartment with a personal massage therapist to go along with it...........
  
  
  

• Thursday, March 8, 2012 4:11 PM, EST

  My morning adventure aka rant..still waiting on results

  So I was impressed with my self for not playing SIMS to the wee hours of the morning, played longer than I wanted, but by 1130am I was snug as bug in the bed with the alarm set for at first 520am. But when I woke up for a bathroom break at 415am I decided to change it to 540am so I can get a few more winks. Rolled out of bed got dressed and rolled up to the hill, need to leave early because UNC after 10 years is still working on the same patches of roads, really how long does it take to work on a 10ft section apparent 10+ years.
  
  While I am on roll, to the older gentlemen this morning when u exit ur vehicle either walk in a straight line up the aisle to the end then cross over to get to the sky ramp or immediately cross after getting out of your cars don’t fucking walk in a zig zag pattern like ur the dumbass wasted DUI dude on Cops, HELLO other vehicles need to park….and this goes for the DUMBASS College students as well who have their I-PODS at full throttle and apparently was never taught by mommy or daddy or Hell the nanny to look both ways before you try to cross EIGHT lanes of traffic when the little RED HAND says stop……Cause sorry my ass is going to laugh when your stupid ass gets hit by the Wolfline bus……and before you go and say free ride if you get hit by the Wolfline bus you a free education..umm that is an urban myth just like the one you get a 4.0 GPA for the semester if your roommate dies…yeah doesn’t happen or I would have gotten it when my roommate tragically died in an “apparent” one car accident on a back road in the mountains….best room mate I ever had even if she spent more time partying/bar tending and we full bar hidden in her wardrobe, which her brother and I had to hide before her mother came to pick up her belonging…well enough with the sad memories…back to my rant….
  
  Man with the Georgia license plate and Duke sticker there is no excuse for you not to know what exit you need to get off on…………………………………don’t fucking wait till you actually see the DAMN 289 exit slam on breaks and cross over eight lanes to get to the exit….or the dumbass woman speed the FUCK up and get over don’t slam on breaks and almost cause a 10 car pile u behind you just to get over to the next lane for what???????????????????????to slow the fuck down again and almost cause another accident………..and really Time Warner Cable Truck what the fuck when traffic is coming on via on ramp move the FUCK over especially when there is nothing in that lane…don’t fucking speed up and match the speed of the cars trying to get on the interstate……and yeah you could see those blue lights like 10 miles before we got close…….Hey Dumbass he already clocked you why and the Hell you going to slam on breaks 15 ft from him…..if he was going to clock you he would have already done it…and frankly his ass is on the other side of a concrete divder he ain’t going to chase your ass……it’s the 1st day of the ACC Tournament and we live in North Carolina they are too busy watching the games…….
  
  Now on to my visit to the Children’s Hospital to get my MRI, remind me to request never again to go that scanner….and to my favorite NC State nurse in plastics don’t ask me again if I am Claustrophobia you had me thinking about tight spaces and freaked me the fuck out for the first 10 minutes. …and really to the male nurse lets not put the IV in the nice BIG green vein that all the nurses use with absolutely no problems, no your dumbass can’t tell which way the vein runs…REALLY it goes up and down not left to right. NO your ass goes to the other side where there is no visible vien then have to FUCKING move the needle around trying to FIND THE FUCKING VEIN…really…………….
  
  Then scan tech girl was cool, and not sure what to think when the tech comes back in after she has taken a couple of pictures, ummmmm where are we suppose to be looking? It is on the left side right…tell me without pointing…HELLO you have me strapped me the FUCK down to the point if I had a problem I could not squeeze what of the hell that thing you gave me since dumbass male nurse placed it at my elbow………….I said yeah in the arm it area she immediately goes to touch the area damn yep right there….and back into the little room…..This Scan is like 30 minutes and you can’t sleep because you keep getting told breathe in………………………..breathe out…………than you hear all the noises….so if have figured out the scarstic state of mind I was in, to keep myself from going in sane having to lay in this damn sci-fi tube decided I was going to figure out what words it sounded like when the machine was taking pictures…………one sounded Fuck Cancer……….Hell……Shit….Damn…Da…Damn…Dam……….etc… then it was time for more pictures but this time with contrast….then it was all over….giving the dumb ass nurse something else to screw up on…..really how hard is it to take an IV out put a piece of gauze and a little bit of wrap over the gauze………….not a half ass gauze barely on the pot and half a roll of wrap wrapped around my arm……………from now on only Sandee is allowed to my scan appointments…damn it and please no more scans in the main hospital….Cancer Center fine, Ambulatory Center fine, the one by the 40 exit even better……..
  
  So now I am in a waiting game, for the radiologist to read and for Damitz to figure out what the Hell it is and what to do about it, if anything.
  
  

• Wednesday, March 7, 2012 3:06 PM, EST

  Scan reprieve rescended by Plastics

  This has got to be the shortest reprieve, Friday the ONC decided no scans and pushed my appointment back to June for CT Scan and canceled Tuesday appointment.  Yeah that lasted until today when Plastics got a hold of me,
  
  I keep have this same irritating pain that acts up  not all the time but when you move a certain way, reach, etc.  It basically likes to lock up at the end of the day.   Each time they felt the location nothing, mind you I had radiaiton on this side before expansion due to an infection and the fact the first implants where so tight it put my pectoral muscle into a knot.  Behind this muscle is my Implants, after they switched out the implants the muscle relaxed but then started to knot back up since it was "normal" for it for two years, therefore I have too take muscle
  relaxers.  Muscle relaxers, naproxen and the oxy help but does noting for when this area knots up.
  
  Well every time the have felt nothing....until..............now...There is some harden which Dr. Damitz believes may be scare tissue or the muscle knoting up....so the words...we need an MRI come across her lips....with your history..um yeah I am scanning......really..then she said since your up here lets see if we can get it now....I literally feel off my chair laughing....you seriously think ur going to get a MRI scheduled in like 10 minutes...lol..I got bridge u might be interested in...
  
  Look I am an expert I know first off you got to come up with some BS to get the Ok from the insurance, that there could take all damn day, then you to negotiate with the like 6 MRI scans UNC has to see which one owes you a favor, and if I stay (mind u its 1045am) by the time you get approval its like after 5pm and all the schedulers are gone..hey they work 9 t0 5 and that is it five minutes to five they at the time clock becasue a state clock is a state clock it rolls forward at the 53 mark to the hour so theoretically you can clock out a 453 and the system shows you clocked out a 5.  Needless to say I learned my lesson the hard way my ass isn't staying around you call me get everything straight, I need my nap time.
  
  So apparently when I said anytime on Thursday or Friday since its spring break and track had its last practice today.  Take a wild guess at what time my appt. is?...............damn if it isn't at 745am..really UNC know I got to attempt to go to bed early roll out and drag my sleepy ass who apparently can't eat after midnight up to the Hill so they can run what ever the hell number of scan this is I lost track when I no longer could count on one hand..  I like the nurse question u scared of tight places..really...then she goes on to tell the other nurses the man in the NC State hat is next lol............(did I mention she is a huge state fan..  
  
  I actually think this is my first MRI since I tore my ACL in 2000.  They radiologist prefer to have the dr. mark the spot before the patient gets there, my doc like yeah she (being me the patient) is more than qualified to show the tech wear to scan... So doc can I have a percentage of your paycheck...cause you now I had to spend 4 bucks on parking in two garages...becasue NO my ass wasn't going to walk..
  .
  So I roll up to ONC Clinic/unit and basically bypassed the front desk girl looked at me, hey I replied got to see Sandee to get my prescriptions she nods her head and lets me pass.
  
  Take a wild guess at what dr. forgot to leave my prescriptions, so Sandee pulls up a site and pages my doctor......Five minutes later my ONC comes sprinting down the hallway..Sandee laughing see when I page she does reply she comes running...lol...Oh shit I forgot yesterday..what cha need...out of breath she runs to the workroom to print off my prescriptions and me and Sandee resume discussion on W Basketball...then finally doc comes back with enough prescriptions to last till June. 
  
  So I will either get the results from the Radiologist or the Plastic Surgeon, so how much copay will I have to drop ontop of the 160 I need to pay plus the $200 they already got out of me last week.......I plan to breakout the cost so when I send a check for like $25 to College Foundation instead of the $170 payment which the did drop to $116 for a while....let me see life>college loan???? gas, food, electric>>>college loans.......Now if I would go on disability and stop working the loan goes away...cuse guess what I make to much like by 2 or 3 hundred dollars to qualify for financial deferment.
  
   I can't get them to understand is I don't no how much I will spend in a month hell I had to drop over a grand in January (money I had saved up) on the flare up I had that caused walking pneumonia, a pulled tooth and 7 trips to UNC and the damn ENT.. 
  
  Oh well back to trying to find something to do with the rest of my day.
  
  

• Monday, March 5, 2012 4:36 PM, EST

  Sleepy

  Apparently my body is fully aware of the fact it is Spring Break, at first this morning I thought I was going to be late....Full rested I woke up at 530am but then realized damn no soccer practice, used the bathroom and snuggled right back under the covers and back to sleepy land I went.
  
  When I finally did get up my lazy boy was singing to me sit,,,sit...then the PS3 and Flat Screen joined in..play me....play me......it took all my strength to put on my adidas sweatsuit and slip into my vulcan skate shoes and putter into work.....Way too much going on for a Monday...everyone trying to cram meetings in before they all leave for the ACC Men's Basketball Tournament.  I managed to place four orders in between my safety committee meeting, crammed lunch in before going to the next meeting for our large Track meet at the end of the month.......On the bright side no hot water in the showers mean the kids turn in dirty loops mighty quick...good thing we have a separate hot water heater so laundry isn't effected with this lack of hot water..can't be having any outbreaks of anything.
  
  I made it out of the office at 230pm after getting frustrated trying to sort the Kwik goal boxes....the part #'s on the instruction is different than what the HELL they put on the sticker, I got most of the parts separated into piles will finish it up in the morning when my mind is clear so the twins can put 2 of them together, so the soccer will have 2 useable goals instead of one, then those old goals can be cut down and scraped.
  
  Same as this weekend I seem to be getting sleepy around the 330pm mark which is more than likely related to the fact of trying to take meds at the same time, to keep my body in a routine.  That and I really prefer not to feel in pain, today I didn't take my meds early like I usually do instead took them at 10am, which has pushed everything back, meaning a some pain while I wait for the meds to kick in. My notorious sites of pain is kicking in a little bit this afternoon, need to stay up cause I have two hours of Alcatraz to watch tonight.
  
  I went to Target to fill one of my prescriptions and learned that tTarget has a new program buy 5 prescriptions and get some kind of discount on the next.  The pharmicst asked you want to sign up?  Really did you have to ask I am in here more than you....lol I should have my own lab coat.  I am surprised they haven't asked what the hell I have the amount of drugs I get from them, I have to wait on my inhaler that I lost, they had to fax doc about it since there was no refills for it and I have no idea what I did with my damn inhaler.
  
  I will have to pick up my prescriptions for March thru June on Wednesday when I go see doctor Damitz. I think that is the last appointment until June that is scheduled but I will be making an appointment on Wednesday with the eye doctor since that Clinic is in the same building as Plastics.
  
  I really need to start getting in a routine of putting my lotion on my elbows and knees to get the psoriasis under control before starting the Plaqenil for the swelling in the joints.  That is the one thing I have trouble with remembering to take and when I take my drugs, I might need to start having a check off list...Wait...then I would have to remember where I put that list...damn it....
  
  Oh well time to do a little reading on some forums, maybe take a nap before my TV shows come on.
  
  
  

• Sunday, March 4, 2012 2:36 PM, EST

  Scan changed to June

  Apparently I get a reprieve from a scan since I got x-ray twice in January due to walking pneumonia and countless test run by both the ONC and Rheumatologist.  Now I will get a scan in June, apparently I have been counting differently then the doctors about my NED status.  I have been counting since the last Chemo treatment in October, the doctors have been counted since the first scan came back in January. 
  
  So by their calculations I have been NED since Jan 10, which makes it 2 years and the start of month 3.  Good news yes, but the effects of the CHEMO just for the hell of for about 5 months and the autoimmune disorder takes a little bit from the fact the cancer is under control with absolutely no Chemo.  Again I say its the DEW, those reports claiming cancer feds on sugar apparenlty hasn't meet my cancer.  All the doctors can do is just shake their heads.
  
  I still have my scheduled appointment on the 7th with the plastic surgeon, then I get to swing by and pick up my prescriptions to last me till June from Sandee.  Then I got to get the Naproxen filled and get another inhaler since apparently I have lost the damn thing.  The flintstone vitamins seem to be working that getting on a routine schedule at work, humidifier in bed room and eating more seafood and chicken based foods (limited to no steak or hamburger).  A slow week is coming up at work but I can't rest too much or I will be hit with walking pneumonia again.
  
  Apparently 6 to 7 hours is the ideal sleep my body can take, stay in longer in bed and be in pain for the rest of the day.  On day off around 3pm is apparently nap time and 10pm is bed time if you are sitting in a lazy boy get up to lay on sofa u become wide awake.  Thank-fully is wasn't for long and the craziest ass Equipment Room dream....
  
  
  

• Thursday, March 1, 2012 5:29 PM, EST

  Need Pain Meds to put lotion on

  It is just wrong when you have to take naproxen and oxy before you put the lotion on your hands.  The lotion prescribed by your doctor which like every thing else burns the HELL out of your hands, burns for a shorter time if you put the lotion after taking meds 
  
  Trying to figure exactly what caused it I think it was a combination of the drastic weather changes the last couple of days, having to unload and handle card board boxes on Monday thankfully we where able to unload the truck before it started to rain, and maybe the gloves from the training room. 
  
  I know what ur thinking put some gloves on before handling cardboard...NOT my hands don't like cloth, wool anything on them including soap water, being touched by a towel, before any of this can happen drugs must be on board. The hands actually has the least amount of problems with some of the cheap vinyl gloves we have but they overheat the hands.
  
  Been staying real busy with having track competing every weekend so its a continuous cycle wash Monday, sort Tuesday, pack & issue Wednesday, Thursday/Friday wash those that turned them in late. On top of that we are inventorying the entire equipment while simultaneously preparing for one of the largest track meets on the east coast tight up there with the Penn Relays, thousands of athletes and several hundred schools.  All this has helped me keep the mind off the upcoming scan on March 7th.  I just realized today that was a good a day to have a scan right in the middle of spring break.  Which means I get to sleep in becasue practices don't start until 9am..yeeppppp,
  
  I can tell you right now the technicians are going to be asking questions like "you sure you can breathe?"...lol because that right lung is rattling and wheezing.  The sinus is infected and draining down the back of my throat, luckily it is been caught going down and isn't coming out of the lungs like earlier. It looks like this is another thing that I will have to live with walking pneumonia forever.
  
  It is bad when the dermatologist, rheum, onc surgery, onc and gastro doctor's tell you to take quick showers becasue your skin can't take the North Carolina tap water.  If you look around my apartment then look in the shower and see the no tears smurf body wash, and the no tears 2 in 1 blue smurf shampoo you might start wondering where the kid is...lol  Nope sorry none here that is what I have to use for my now very sensitive skin....now the toys...mine....mine....mine...as Carrie describes it, it puts toys r us to shame...Hey I have to have something to do after the long hours at work...
  
  I got the Plaqueil filled but haven't took it yet, the eyes are feeling really dry, and I need to set an appt to see the eye doctor, becasue I think the girls failed to schedule my next appointment after they put the temp plugs in my tear ducts.  I have added Flintstones Chewable vitamin with Colin in it, eating minced clams, corn, macaroni, turkey slices, chicken, boiled eggs, tuplia filla (baked from target) as my main food.  That and getting the body on a system of getting up close to the same time every morning seems to help with the fatigue, but the weekends jacks my system back up and know spring break is probably going to send me into a tail spin.  But like everything put one fire out and three more pop back up.
  
  At this rate I see a three appointments, eye, gastro and dermatology.  Gastro needs to check the throat since food hurts going down becasue lack of saliva. The dermatologist needs to take a look at the hands the right one is bad to the point the skin has split and healed while I slept.
  
  Well back to my tv watching and playing either Sims 2, Sims 3 or Sims Medieval haven't decided...and yes I have all three plus Sims Castaway for PS 2 and PC.  I mainly like it becasue you can build all kinds of crazy stuff, make your on towns, worlds....etc. and yes Jeremy and Tonya I use the cheats damned if I am going to work when I can type in motherlode and get $50,000 so I can build my mansion, buy my porshe, helicopter, limo etc. and right click the newspaper to promote my self to the top....lol...wait until I get that expansion pack so I can become a rock star and tour with Katy Perry....lol
  
  
  

• Thursday, February 23, 2012 7:55 PM, EST

  The crackling and wheezing started back again in the right lung for the last 2 weeks.  little different from the last time not coughing up green mucus from the lungs that is coming from my head.  It is good and bad head and been dry but this mucus overload is keeping the dry eyes and dry mouth at bay.
  
  I still have a wet cough but nothing but clear mucus is coming from the lungs, but my hands for some reason haven't been swollen for about a week instead they got red, dry and chapped with little red marks.  Then today they decided to swell. 
  
  Debating on whether or not to go to the ENT before i have my CT scan on March 7.  One day the mucus is green than 3 days its not, than its yellow then green again.  From the question both the Rheum and pharmacist asked when i was get the Fluconazole for the yeast infection in my mouth due lack of saliva, was how long i was off of the previous antibiotic, which is the one that clears up the lungs, it had to be at least 3 weeks which it was, so really i can't take the antibiotic until at least next week.
  
  My body is fighting what ever this is hard, took a half a day today after sending track off to ACC in boston, got home really sleepy, living room dark but couldn't get comfortable in lazy boy, tried to take nap in room, too bright tossed and turned, exhausted moved back into the living room, cleared off the couch that was storing my toolboxes as I have been rearranging the apartment, went up stairs got some food and sat down to watch the marathon of the first 48 hours.
  
  I have been sleeping fine since i put the humidifier in the bedroom and having a set schedule to get up and go to work has seemed to help the body, it also looks like i will need to get one for my living room (have to figure out where to place it) and figure out how to get one in the Equipment room.  I think the dust has been aggravating the lungs and sinus, usually start getting a runny nose when i was playing around with the shoe spinners which are coated in dust.
  
  I feel another dusting of the equipment coming, i was out running errands when the boys decided that the top of the rollers needed to be dusted. From the description i got it would have made an interesting you tube video with the right sound track.  The white #17 jersey tells how fast the dust accumulates it was cleaned and white one day, three days later it was brown again.
  
  I have noticed that my smell sensation has increased and is more sensitive then in the past.  I have breathing problems and nose gets irritated when I go into stores that incense, perfume, chemical aisles, etc.
  
  At this point i know that my lungs will light up on the CT Scan, since the Dr. made the comment that the x-rays showed improvement 3 weeks after be dx with walking pneumonia and it was the left lung.  Take a wild guess at which lung was covered in small nodules  when I as dx.  They where too small to biopsy unlike the spots in the liver but they fact I no other symptoms and it cleared up like the liver after starting Chemo the doctor's said it was cancer.  The right lung had very few spots unlike its counter part which was on the same side of the tumor. So it makes me wonder if it is a combination of bacterial infection and mets since the wheezing and shortness of breath is back.
  
  I was wanting to take a trip this weekend to the coast but I don't think my body will cooperate, hoping i will be able to sleep in Saturday.  Hopefully i can re-energize the batteries, spend the day maybe reading, and doing a little more organizing, play some video games.
  
  
  

• Tuesday, February 14, 2012 6:27 PM, EST

  For those friends and family who like to donate or support cancer funds do some research and no were your money is going. The only one I support and no its not because the founders wore the red and white but the fact that the money actually goes to research and doesn’t spend time (donated money_ suing Mom and pop for trying to raise money using Pink and the word cure for cancer. (http://www.huffingtonpost.com/2010/12/07/komen-foundation-charities-cure_n_793176.html).
  
  Hello your raising money as a NON PROFIT you aren’t a Retail Giant or store protecting your name and bottom line, you like the other charities are trying to raise money, don’t get your panties in wad because someone decided to give their donations to another cancer group not named Komen. To the point they sue charities trying to find “the cure” to lung cancer, get a FUCKING grip Komen and put that 1 million you use to sue Jack and Jane to research for the cause and find a cure for Metastatic Breast Cancer. While I am on it how about checking the products you slap the ribbon and cure on that actually is unhealthy, about the waste and trash produced in your “races” to the point that the cities have to come with a recycling programs.
  
  I would rather give to Jimmy V foundation and the Kay Yow Cancer Fund who use corporate sponsorship to offset costs for their employees and the money they raise 100% goes to research projects to find cures for all types of cancers. Hell even something like Rely for Life but I prefer to have nothing to do with Komen which to me acts like an exclusively sorority club who has lost touch with reality especially the corporate office. The pink ribbon has become a brand trying to make breast cancer “pretty” yeah I can tell you it’s not.
  
  http://www.youtube.com/watch?v=3QPZfcYTUaA&feature=player_embedded#!
  
  The one event I do support is the Play 4 Kay and Hoops 4 Hope, this weekend I happened to work at my 7th Hoop 4 Hopes game, this time selling Kay Yow Nike Merchandise, four tables selling over $10,000 which all went to finding a cure, in addition to all the ticket sales and collection pots. Rely for Life would be another one to give too.
  
  When shopping don’t just by something that is pink or has a cancer ribbon because most of those items may if at all send a penny and you paid $10 for a $.50 item made by some kid in a sweat shop in Asia, Mexico or South America. Like many breast cancer patients all this “pink washing” is bull shit, over sensationalized by many companies to sell merchandise and line their pockets. Before you give a breast cancer patient anything with a ribbon or pink make sure she wants it, many find it offending or another reminder of what they are facing or faced (not talking about me personally talking in general about my observations but I due hate the color pink).
  
  Like school and life in general you have your clicks the country club kids, the nerds, the dweebs, the rednecks, the jocks and whatever is the latest verbiage used by today youth, you find the same in the breast cancer community. When I first got dx find forums or support groups wasn’t on the top of my priority list getting to my next birthday was, when the dust settled I discovered online forums. I was 2 years out from dx when I set up my accounts on several different forums. Because I was triple negative that had its own foundation/website, since I was Young that had its own foundation/website, and because I had Breast Cancer that too had its own foundation/website. All three also have facebook as well, I visit all these on daily basic since there is no local support groups because of my age and stage.
  
  I have read and heard stories of women who where shunned or asked not to tell the support group that they were now stage IV or dx with the IV out of the gate. BC-IV’s (breast cancer stage 4) from what I can tell myself included have a tendency to tell like it is and have dark humor; well you have to when you have a loaded gun playing Russian roulette while high on pain meds. Since I am young and Stage IV there is no support groups or people near me that can understand or relate to me. There is a group of young cancer patients in Durham but due to work I have be unable to join any of their outings. After a long day of work I don’t feel like driving all the way up there and then drive back home. The lack of any local support group and people my age was again brought to the front burner this weekend.
  
  Like usual I don’t show up at the 8 min mark to get in line I wait till the 4 min mark, and move to the back of the line formed behind the 2 to 5 year sign at the Hoops 4 Hoop game. I still had my employee tag on and I was getting sized up and down by the women old enough to be my mother and grandmother. Finally an older lady with a cane shorter than me asked the score, I took two steps back to see the score board that opened the door to a conversation when she asked if I was survivor or an employee, I replied both. Thus the start of lets compare notes who has it worse, hands down I win as soon as I uttered the words Stage IV then the jaw drops when I saw Triple Negative and oh yeah Brac 1 + I had several Oh shit faces staring at me. All those in ear shot or could hear had turned around to hear the short version of my journey (no offense intended due to age), the old lady put it simple you think you have it bad until you hear another’s story. Yeah I was 33 but someone might need to inform my 70 year old body on that fact.
  
  This was the first time I got a chance to walk around the upper concourse to see all the display’s as I checked on the two merchandise tables. The biggest thing I noticed was the lack of information telling that under 40 young ladies can get breast cancer too, or information like the Stages of breast cancer, you know dummy version of breast cancer. A guide or cheat sheet for those cancer patients who aren’t comfortable in face to face support groups but would be more interested in online forums. A check off list of important information a girl should know like family medical history which can be helpful if say at 26 you find a lump, well if you knew several people in your family had the same thing at the age and it was cancer, which would be a red flag to go to the doctor ASAP.
  
  It would for me but I didn’t have the information until after the words you have Stage IV, like many young girls the lump was written off as a Hematoma due to the fact I had injured that breast, but because my GYN knew my mom had Ovarian she got pissed at the Mammogram people and pulled a favor at got me immediately into a ONC Surgeon that immediately did a biopsy. I hear this similar story over and over again on the forums right now there is a 26 year old girl in New York getting brushed off because she is 26 she can’t have breast cancer, hello I was 29, and I know another local girl 28 who now was METS to her brain fighting for her life at UNC another a teacher with 2 little kids from the mountains dx last year, she wasn’t lucky she passed away a year later.
  
  I would like to point out that there are women who are not SURVIORS but woman who for their remaining life will be in TREATMENT living life in 3 month increments scan to scan. To shed light on Cancer Awareness dirty little secret never spoken whispered like Voldemort, because one is afraid
  
  Stage IV Breast Cancer Patients are a group that rarely gets recognized and receives little of all the research funds raised by various 501 compaines about 3% to 5%. Many of these Stage IV women have come together to create two 501 companies to Stage IV patients:
  http://www.metavivor.org/:
  
  WHO WE ARE: We are a 501(c)(3) non-profit organization run entirely by volunteers, mostly with MBC. We created METAvivor because we believe the following:
  • Support for MBC patients is greatly lacking
  • Awareness of the disease is appalling low
  • BC mets research is horrendously under-funded
  OUR MISSION:
  • We offer local support
  • We help people elsewhere establish support programs
  • We seek out speaking engagements, media opportunities, and other venues to make our voices heard
  • We award a MBC research grant every year
  OUR FOCUS: Metastatic Breast Cancer (MBC) is the spread of breast cancer to non-adjacent parts of the body -- most commonly to the bones, liver, lungs and/or brain. At present, the disease is not considered survivable. METAvivor hopes to help change that fact.
  OUR MOTTO: "30% for 30%": We believe that since 30% of breast cancer patients metastasize, 30% of breast cancer research funds should go toward MBC research.
  
  OUR RIBBON PIN: Our awareness ribbon pin reflects that we are "beyond pink". Green represents Renewal, Hope and Immortality. Teal represents Healing and Spirituality. The thin pink ribbon on top indicates that our metastasis stemmed from breast cancer.
  
  “METAVIVOR” DEFINED: A person living with a metastasis. It combines “vivor” (from “survivor”) with “meta” (from “metastasis”).
  
  OUR GOAL:"To make a Difference!": Want to help? Let us know! We welcome all ideas and offers. Contact Us.
  
  Who is MBCN?
  MBCN is a national, independent, nonprofit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer . We strive to help those living with stage IV breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.
  AWARENESS:
  MBCN raises awareness of metastatic breast cancer by putting a public face on the metastatic experience. We give those living with stage IV disease a greater voice and visibility in the breast cancer community, the medical community, the research community, and with the public-at-large.
  EDUCATION:
  MBCN strives to help those living with metastatic breast cancer be their own best advocate through providing education and information on better treatments and coping with the disease. Our programs help to end the experience of isolation, ease the fear of the disease, provide information to enable us to participate in decision making with our medical team, and defy the myths of stage IV breast cancer.
  We, the metastatic population, need to be acknowledged, accepted, and heard. We can no longer be hidden away in the shadows. Those of us living with metastatic breast cancer need to be included in the discussion!
  
  MBCN is fighting for treatments to extend life
  making metastatic breast cancer a truly chronic disease,
  as the search for the cure continues.
  “ Recurrences are what may become metastatic disease, and metastatic disease is what kills. Over 40,000 people in the United States will die of breast cancer this year. Sadly, only an estimated 5% of research money is being spent on understanding and treating metastatic breast cancer.”
  “Mammograms, treatment for women (and men) who can't afford it, household help for when mom is flat with chemotherapy, new drugs, education, research…the list of needs is endless. How much of your shopping dollar is really going for this stuff? Would it shock you to know that many businesses slap a pink ribbon on their product this month to get sales, and donate a fraction of a penny to the cause? Pink ribbons are big business. Don't be fooled by the hype. Use your economic power to demand accountability. Look on the label of your pink product and get the facts.
  We must the facts about breast cancer. Don't let the plethora of pink cloud your eyes. The real facts are not so pretty.
  Breast cancer incidence is increasing worldwide.
  Mammography does not prevent or cure breast cancer.
  About 40,000 women and 450 men die of breast cancer each year in the United States.
  All women are at risk for breast cancer. A woman's risk is one in 8 during her lifetime, increased from one in 11 in 1975.
  90% of cancer deaths are due to metastasis, but only 5% of research is going to understanding metastatic disease.
  Businesses across the nation are turning a healthy profit by attaching pink ribbons to what they sell.”
  http://voices.yahoo.com/making-support-count-breast-cancer-awareness-10130449.html
  http://www.phdinparenting.com/2012/02/02/cancer-sucks-pink-is-profitable-and-cures-are-magically-blameless/#.TznEI4GnKSo
  
  
  
  
  

• Saturday, February 11, 2012 12:39 PM, EST

  Time to roll the dice and take the Plaquenil to see if it can get the inflammation and stiffness under control, it has been getting worse very stiff and sore in the morning, usually takes 3 to 4 hours to loosen everything up. About two hours after I get off work BAM wide the hell awake and probably a little loopy from the OXY and pixie sticks. Now I just need to train my body and mind that bed time is 11pm which means SLEEPY not wide the Hell awake and can’t find a damn thing on tv fall asleep on sofa and wake up like I just played a bout of roller derby. I drag myself to bed taking the trust cell phone with the alarm on it since it’s the only thing that wakes my happy ass up, because in order to turn it off you have to hit two buttons, and the shit is loud as hell, scared the shit out of me in morning.
  
  I am also going to try and change up the pill rotation before I had just been taken the Naproxen, Cycloenzapar and Oxy at 5pm after work and again right before bed time. Suppose to take 3 Cyclobenzapar but it exasperates my dry mouth, so I cut it down to 1 sometimes 2 depending on the amount of activity done that day. Also have another 10 days of Fluconazole for the yeast/fungal infection I get in my mouth from the lack of salvia….you would be surprised at the amount of work salvia does and when you ain’t got any all hell breaks loose.
  
  Before I take this plunge with Plaquenil, I want to see the eye doctor they where suppose to plug me in for an appointment after the last when they put the plugs, and I think it has been way past the time I should have went back. Not that I am going to allow them to solder my tear ducts these removable plugs seem fine to me. Once I start the medicine I will also have to see them every 3 months since Plaquenil can cause damage to the retina as a possible side effect. One of the side effects is suppose to be weight loss now that is one side effect I can live with..
  
  For now I plan on just relying on the pain medicine for the swollen glands in the mouth, since apparently steroids which equals possible weigh gain, so ex on that say. For this problem I will need to see the ENT if any problem arise which is good since they are in Raleigh past the fairgrounds.
  
  
  

• Wednesday, February 8, 2012 5:13 PM, EST

  mini update

  Good: NO bone mets
  
  Bad: I have arthritis particularly worse in my feet and my left knee.  Arthritis in both wrist and elbows and I figure that is more than likely what the rib pain.
  
  I will see the Rheumatlogist on Thursday more than likely to get more blood/urine test run that Collichio hasn't run already.  I have the marker for Rheumatoid Arthritis, so I think that may be re addressed at this appointment.
  
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• Saturday, February 4, 2012 5:13 PM, EST

  So apparently I have a Dr. on the 7th with my ONC Surgeon for a check-up, still wonder when that damn eye appt. is, I will have to have the girls hack in to the system and tell me when it is.  Hopefully I will know on Monday about that damn bone scan, becasue here it is Saturday and I am doped up and the shit still hurts but that is not gone to stop me from playing Sims, typing or playing my PS 3 damn arthritis or METS or both what ever the HELL you are....Oh well.
  
  Tomorrow I will get a little work in so we will be head on Monday, not sure when KB is going to be washing the MBB laundry.  I spent all day Friday at UNC finally getting back to the apartment at 230pm. 
  
  Trying to get a little motivated to finally take my flat screen out of its box...yes Carrie its still in the box....deciding on what is staying up here and what is going into my future Hydro Playhouse back on the Coast.  Place to hold all my toys and projects...yes I said toys damn it, finally going to set up my train, art projects, diorama's and display the rest of my toys/keepsakes...As my sister puts it I have more toys than toys r us...hahahahaha...mine and all mine...lol
  
  Hell on the bright side I will have alot to play with if or when I retire early, thank god for creativity and kit bashing and for a mother who forced us to use our imagination, some of it probably had to do with we didn't have much money and no CABLE TV and man hadn't invented the internet we had a video console Atari put that was a rainy day thing after watching Dr. Who. 
  
  Allot of people thought we had money especially at school since I had like 20 pairs of Nike's...yes Nicole my fascination with the Equipment/Apparel started at a young age.  Yeah and my mom paid lik $20 at the Salvation Army for those brand new Nike's becasue apparenlty places like Belk once shoes are returned even if they haven't been worn get sent to the Salvation Army...my mom was ahead of her times cause that is where all my name brand shit came from..now there are "cool shops" that sell/exchange those name brands...basically a fancier way to say thrift shop baby...
  
  Hoping I have enough energy to go home after I send off the Indoor Track Team to ACC at Virginia Tech if I am not mistaken or BC which ever it is out of state.  Allot also depends on what the doctor's tell me this week.  I have two schedule appointments Dr. Amos on Tuesday and my Rheumatologist on Thursday. 
  
  Would love to see all the hardwork Rene has put into our childhood home, go to see before Ash burns it down cooking steaks on the patio...lol...sorry I had to do remembering those kitchen fires set when we where children.  Yeah Ash you have fire experience setting and putting them out...lol..remember I am doped up.
  
  Well back to being bored maybe I will play Sims in a minute if I can make to the bedroom to get on the desk top, the lazy boy has me chained up at the moment, everything needs popping, left leg is heavy, just popped the fingers ouch...........basically I am a 30 year old with a 70 year old body...therefore I should always be in the front of the line at all family dinners assisted by which ever cousin is the flavor of the day..meaning Tina gets first dibs since she is the master of getting in the front of line and passing down the knowledge to the young pups...............that is all folks.............................
  
  
  

• Wednesday, February 1, 2012 7:46 PM, EST

  Trying to figure out which is causing my pain my cancer or my sjogren’s syndrome. Because we are trying to space out scans due to the amount of radiation my scan will stay on the schedule for March. I got a blood test that showed my liver functions are fine, so more than like the Sjogren’s is causing inflammation in my liver. I will not get my tumor marker test back until next week, and I get a lovely Bone Scan this Friday.
  
  I had been wondering if both my lungs had walking pneumonia or just one, I found out it was just one the left lung. The left lung is the same one that was covered with Mets in 2008, I had five days of a powerful antibiotic, and apparently the lung looks better…ut not clear…It is making me wonder if possibly I have METS…I also have some tender spots on my ribs, she thinks some of the spots are due to all the coughing I was doing with my pneumonia especially the one on the back, but once I jumped when she hit the one on my rib and the fact I was still having pain that feels like my bones on both forearms and shins the bone scan was ordered…..If the scan is clear it means all the problems are Sjogren’s related and most likely arthritis.
  
  Doc basically said I had about 10 pounds of swelling going on and my hand are more puffy than she has ever seen. I know a flare up is in the process since my fingers are going red and dry. Sleep has been hard to come by bed, sofa, bed, flip other way on sofa, month of this means Heidi passed out yesterday from 5pm till 1am work up bathroom break and back to bed till 7am. I fell like Goldilocks can’t find the right bed or position to sleep in but I can’t keep going the route of basically exhausting myself so I can sleep.
  
  Depending on how the bone scan is, I will have to make a decision on taking the immune suppressant medicine and take the risk of opening the gate for the cancer to run wild. At this point I really don’t have much of a choice since my lungs have already taken a hit, and at this point so has the liver. I know my Rheum will be running some more test to check the kidneys and some other marker, basically whatever my ONC hasn’t run yet that relates to Sjogren’s. She also put a note in the computer for him to take a look at switching one of my medicines to deal with the swelling.
  
  The funny thing which I brought when I was talking to the ladies upfront @ work today, dude put me back on Chemo cause Damn I had no problems since I had no immune system and just had to take antibiotics the entire time. I would rather have the sinus infection instead of an entire body of pain and swelling. When I am not working most of the pain is managed because I take Oxy every four hours, but it makes me sleepy and it doesn’t allow me to run around like I need too at work, not just for the money but for my sanity…Even the doctor said one of the main things keeping me NED and sane is work.
  
  
  
•  Sunday, January 29, 2012 11:35 AM, EST
  Question of the day?  Why does the liver area feel funny like its bigger than its suppose to be and hurts if you press against the ribs on the back and side....hmmm.....Is it the Mets back or is it the Sjogren's attacking it, becasue apparently in my research an autoimmune disorder can cause cirrhosis of the liver.  Well we will have to wait till Tuesday, the doctor knows I have been having sharp pain and it was hurting to lay on the right side last week.....so I see a CT scan in my near future...even the pain medicine does nothing for the discomfort as I play on my computer with Mr. Turtle...while eating gizzards..and not a damn thing on TV to watch...
  
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• Sunday, January 22, 2012 5:37 PM, EST

  My body is just screwy, water keeps me awake and caffeine puts me to sleep. But both due nothing to end the ache soreness, per my research Sjogren Patients need to exercise. Well in my line of business your always on your feet, loading and unloading 65 pound washers, moving around and briefly getting to sit at your desk. At the end of the day I make my food upstairs, and settle for the night downstairs, now regulated to sleep in the den because its pitch black. Yes, Elizabeth I haven’t gone to get those curtains yet, not enough energy to drive out to Cary.
  
  A case of water last weekend didn’t change the fact the body felt drained and sore after 8 hours of sleep. I actually fell worse after sleeping than not sleeping at all, no water and dew I am a little bit less sore but still sore, it takes about an hour and half to get going in the morning. But like all things Dew may be making a slow exit, not really thirsty much anymore, taste buds are going thru another change. On the bright side carrots, celery, and a few other “good” foods are making a debut, but I still have no appetite. The tummy most of the time refuses to allow an entire bottle of Ensure to be drunk, but the body needs the nutrients. My diet is similar to when I was on chemo baked potato with cheese, but I think my tummy is starting to reject slice cheese.
  
  I thought about going down to New Orleans for the Young Cancer Coalition Conference, but there is no way in hell my body can take the trip. That and I have a feeling I will be having a CT Scan on the 31st because I highly doubt that the chest x-ray is going to come out good for the right lung. It literally feels like my lungs stop for a second and restart kind of like the little engine that could puffing and puffing up the hill.
  
  All the scars are getting into action, the left knee is swelling, pain in the shins, liver hurting especially if I lay on my right side, fore arms aching, face going numb on the left side, swelling between the fingers, pain while using the can opener (yes the can opener), the famous fissure making a long overdue appearance on Friday, the intestines getting in on the action, which means more problems with the little old fissure. So in summary the Sjogren’s has effectively called an all out attack on my body.
  
  
  

• Monday, January 16, 2012 10:30 PM, EST

  Day five of mandatory rest and antibiotics

  Thought today would be better since I was finally able to sleep in my bed. Nope I was wrong my body still feels like it has been ran over by a train…between the breathing issue and the Sjogren’s my body is getting a double whammy of fatigue. This fatigue means no energy, which equals more time in the lazy boy which equals more pain. Haven’t been coughing up yellow stuff since Saturday but everytime I eat, I cough and I had a dry cough all day yesterday. Got up this morning brain is well rested body is a different story, a temperature of 93.7 and then my stomach decided that it wanted to join the party. I have eliminated another food from my diet, good thing Food Lion had Chicken Noodle Soup on sale.
  
  My lungs are still doing some strange stuff; literally feel like they stop for a few seconds sort of like a hiccup, stops than starts again after walking or exerting one’s self for a certain period of time. The liver has decided it is going to start aching, pain in my forearms, they ache even more when I start writing and pain on the right side.
  
  Effectively immediately all food is off limits…milkshakes and ensure only….and definitely picking up humidifier when I get off work….Have dry coughs today as apparently I am trying to cough something out of my lungs…probably food due to my dry throat…My ribs and back now hurt from all the coughing time to take a pain pill…
  
  
  

• Saturday, January 14, 2012 7:51 PM, EST

  On the bright side the crap in my lungs isn’t yellow any more, on the other hand I am suppose to “rest”, yeah right.  What we have already learned is my body has the opposite reaction to the side effects, bottle reads may cause dizziness, sleepiness, knock your ass out…...my brain interrupts bong….bong…bong…yeah I am wide awake and NO I am not jacked up on DEW….Cause guess what the DEW aka Caffeine is what calms me…Water + Levoflxcan + Oxy + Naproxen +Levoflxican = wide the hell awake and a total of maybe eight hours…I have to dedecut time for having to switch between sofa and bed, sweats on sweats off, hot, cold, bathroom break, hot, cold, bathroom break…thanks water…I also have an inhaler now becasue my lungs are also inflamed.....
  Made one adventure out yesterday for wings, dew, and a case of water…I am little bored….too much rest ….Today made another trip which I haven’t decided if the cold air or sitting in my lazy boy most of the day made the crackling sound come back….to me it feels and sounds like the right lung which was the lung covered in Mets…it also happens after eating the lack of mucus I think is allowing food to take a trip down the windpipe……The ONC want to keep me off any immune depressant drugs which you guess is the medicine used for Sjogren’s….which attack Mucus producing glands and organs…take a wild guess at what the lung is…..I have read some blogs that a life with Walking Pneumonia could be a future….Funny I don’t feel sick just that I only have a few good hours of good productivity before all my energy is zapped and then a few hours of rest which I think is way my days and nights are out of wack….
  Right now its mostly dry coughs until I eat or drink…almost half-way thru the case of water I bought…might have to make another trip out tomorrow afternoon to get another case….and one of those humidifiers things the doc told me to get…also have to start using that neitti pot thingy….As the UNC doctors sit around the table trying to figure out what the Hell to do next…I go back on the 31st for another x-ray if it’s not clear off to CT Scan I go…
  http://www.medfriendly.com/sjogrenssyndrome.html
  LUNGS: The lungs are two organs in the body that help people breathe. The lungs can be affected by a dry mouth. How? Normally, a person swallows food with the assistance of saliva. People with dry mouth may not have enough saliva to swallow food and wind up breathing it in. This can cause the food to get stuck in the lungs and can result in pneumonia. Pneumonia is inflammation of the lungs due to infection. Another possible cause of pneumonia is infection from bacteria that moves from the mouth to the lungs.
  
  Another cause of pneumonia is when bacteria gets into the lungs and coughing does not remove it. This can happen to people with Sjogren's syndrome because there may not be enough mucus produced in the lungs to remove the bacteria or the person may be too weak to cough. If pneumonia is not treated, it can cause a hole to develop in the lings.
  
  If the lungs or lining of the lungs are inflamed, shortness of breath can result. Lung problems can be due to pneumonia, but can also be due to bronchitis, tracheobronchitis, or laryngotracheobronchitis. Bronchitis is inflammation of the bronchial tubes, which are airways that connect that windpipe to the lungs. Tracheobronchitis is inflammation of the windpipe and bronchial tubes. Laryngotracheobronchitis is inflammation of the voice box, windpipe, and bronchial tubes.
  
  
  

• Thursday, January 12, 2012 8:57 PM, EST

  Fucked up bucket list

  Apparently I have a pre-planned bucket list of getting dx with everything possible. As I was told again by the UNC doctors I am a unique patient not only was I 29 when dx with Triple Negative Breast Cancer at Stage IV, they get under control only to turn around and dx an auto immune disorder Sjogren Syndrome that is not cureable to go along with my cancer that is not cure able.
  
  This Auto Immune Disorder attacks glands that produce moisture like your mouth and nose, which destoried my teeth along with the Chemo in the tune of $19, 885.00. I have to deal with a daily battle of fatigue, brain fog, dry mouth from hell, sinus that have to drain it seems like daily and mucus glands that get backed up.
  
  First of December scans are clear again, would the good news continue HELL FUCK NO, a jackass is stopped for some reason on 440, a bridge to the left SUV on my tail and SUV to my left equals Heidi low riding Corolla with a 5 star front crash rating comes to a complete stop as it hits the truck hitch at a whopping 10 miles and hour…..totaling my car which is designed to crumple…guess that is Toyota’s way of ensuring you have to get a new Toyota….
  
  Went on a vacation and after suffering almost a month with no car…I get a brand new Sportier Toyota Corolla in black just like my last one….now on too my fucked up adventures in 2012.
  
  My Sjogren’s means I have too massage and use a heat pad to get the glands unclogged…..until one decided it wasn’t going to corporate basically backing up and causing an infection in the gland. So I go to the ENT who looks at and prescribes an antibiotic, problem solved? Yeah for that gland, went to the dentist then to get the crown put on the very back upper tooth on the same side, she decided to take an x-ray to make sure that was no abcess x-ray clean but the cavity was a little bigger than the last time…so I got a choice root canal or pull it…..let me see a $1000 or $177….I went with pull the damn thing, the dentist agreed she would do the same thing since it was the last one in the back….the visit still cost me $733 thanks to Sjogren’s because I had to get fluoride trays to help protect my teeth from this stupid disease….bright side I have my models in case I every have to get dentures…….
  
  On vacation I learned that I sleep better in totally darkness…..we get back from vacation and I go to sleep…didn’t sleep as well as I did in the Hotel…reason light from trailer park…So I decided to experiment and sleep in the den which is totally dark…I sleep better so now I will have to go to Kohl’s that sales Eclipse Curtains to block out the light…….
  
  So I have been on antibiotics for 2 days when I wake up in the middle of the night on Saturday after I had a very lucid dream where I was draining and couldn’t breathe…..when I tried to go back to sleep I heard a funny noise…..now I have had bronchitis in college and this didn’t sound like that…I was sleepy so I went back to sleep….I started to play around to see if I could make the same noise standing I did…I had called the Rhemu Clinic to get into have my gland and lymph node checked because the Doc said if it swelled call so thay can make sure it’s not cancer of the lymph node that can happen with sjogren’s….I tell the girl what was going on so she schedules me for the 9th…of Jan I thought but apparently after driving up there it was Feb…thanks a lot…..so I had already emailed my ONC since I had Mets to the lungs..becasue of the shortness of breath which is a symptom of lung mets…..since I was already on antibiotics she was wanting to see me on the 17th….until I told her how long I had been the antibiotics…..so it went to this week Tuesday or Thursday…
  
  So I roll up to UNC…I miss my usual exit…so I took the next one but turned the wrong way…so I ended up arriving 21 minutes after I was suppose to….everyone is comment on my teenage mutant hat…one nurse busted out the theme song….another a guy that does scheduling asked if I got it from Hot Topic…off to the basement for X-ray then up too my usual floor…went to first desk which is the breast clinic…told to go to the next the MultiDispliniary Clinic….why because I am special…I have too diseases….Doc looks at X-ray and come back with a mask on yeah looks like Pneumonia…so she sends nurse in to take blood and put my port in…well the nurse was doing it little different, I asked why…in case you get admitted….Great….well she comes back in with no Mask it is Walking Pneumonia basically the gland infection had went to the lungs…..So she asked how much of the antibiotic I had left….then said it wasn’t powerful enough for lungs so I get put on Levofloxacin…which apparent can cause a Ruptured Achilles Tendon as a side effect….the doctor was like I know…strange…..
  
  I was released and told I have to take Friday off from work and rest…..which means Heidi is doing work from home on her laptop…..
  So apparently my Bucket List is how many fucking diseases can I get……………………..
  
  Great so apparently I can look forward to possible more of this crap....
  
  LUNGS: The lungs are two organs in the body that help people breathe. The lungs can be affected by a dry mouth. How? Normally, a person swallows food with the assistance of saliva. People with dry mouth may not have enough saliva to swallow food and wind up breathing it in. This can cause the food to get stuck in the lungs and can result in pneumonia. Pneumonia is inflammation of the lungs due to infection. Another possible cause of pneumonia is infection from bacteria that moves from the mouth to the lungs.
  
  Another cause of pneumonia is when bacteria gets into the lungs and coughing does not remove it. This can happen to people with Sjogren's syndrome because there may not be enough mucus produced in the lungs to remove the bacteria or the person may be too weak to cough. If pneumonia is not treated, it can cause a hole to develop in the lings.
  
  If the lungs or lining of the lungs are inflamed, shortness of breath can result. Lung problems can be due to pneumonia, but can also be due to bronchitis, tracheobronchitis, or laryngotracheobronchitis. Bronchitis is inflammation of the bronchial tubes, which are airways that connect that windpipe to the lungs. Tracheobronchitis is inflammation of the windpipe and bronchial tubes. Laryngotracheobronchitis is inflammation of the voice box, windpipe, and bronchial tubes.
  
  
  

• Thursday, January 5, 2012 7:54 PM, EST

  Swollen Glands and too many Doctor Appts.

  Doctor’s, Doctor’s and More Doctor’s
  
  Well time off from work equals Heidi’s Autoimmune System has gone off the deep end. Went to the ENT today after visiting the Plastic Surgeon yesterday, as usual I get to be the bare of something the doc’s at UNC rarely get to see, first I get to see my favorite Resident who gets the low down on what is going on, which in turns leads Dr. Damitz to bring along another Doctor to see their first swollen glands due to Sjogren’s….glad I could be of some assistance…..
  
  The ENT took look one look, yep its backed up, here is an antibiotic, make sure to keep massaging and drink a lot of water. ….Yeah thanks for the antibiotics but water is going to make my cotton mouth even worse…which means next stop Monday Afternoon off to UNC….ohhhh…must add to calendar meaning I may not get much work done Monday, I will have to come in super early, since we have a two hour Unit meeting at the football Stadium…..I will see the Rheumatologist on Monday afternoon to see what can be done, and a what price…..If I take the medicine that screws around with my immune system what is the odds of the sjogren’s going dormant and cancer again multiplying???? So basically I am fucked royally.
  
  It feels like I am stuck in the Sahara Desert in 120 degree’s with no water, even my throat is dry, food hurts going down the chute. One solution that helps the backed up gland is chewing gum which in turns hurts my jaws, my poor tongue is burning when touched by any food or drink, my stomach and taste buds have declared basically everything as a no go, the rest of the body is pissed because they need nutrients and nothing is coming down the chute….you would think I would lose some weight…nope hanging at stable.
  
  Going to have to stock pile on Ensure once I see how much money I have left, this week I have spent around $800, next week it will be close to a $1000 with a trip to the Rheumatologist and Dentist. Going to have to do a lot of research this weekend, way too much on the mind, I will need to start making my trusty bullet list of things I need to get done. I need to make my 2012 Medical folder and transfer all the 2011 information to the binder to join 2008-2011 on the shelf.
  
  I have found that work does do the body and mind some good, an escape from all the ache and pains. It has taken a couple of days to get the engine revving up this week due to a very swollen gland, and a very sleepy Heidi. Tomorrow I will get to spend a little time outside, unless it is really cold going to play around in the Stadium Equipment Room.
  
  Need to put some stuff away and finalize where everything is going to go, the Student-Managers will be having some fun inventorying hip numbers, sorting spike implements, as we start to prepare for one of the largest college track meets on the East Coast next week.
  
  
  

• Sunday, January 1, 2012 9:11 AM, EST

  A new year with a new car and hoping to stay NED but at what cost.  My Sjogren's Syndrome has declared an all out war.  For the last month I have awaken to a very painful swollen gland on the right side, eye boogers, severely dry mouth, lips, and dry throat, yes even my throat is dry, lets not forget the swollen hands and feet.
  
  I didn't take my pain medicine on time last night and felt a new pain that felt like it is on the right side underneath the right breast (which is an implant).  I have an appointment with the plastic surgeon so I will have her checkout it, crossing my fingers that I don't have to get over to see my ONC.
  
  It sucks that I literally have to be on pain pills all day, I had been only taking them after work but since the holidays my immune system has been on attack mode.  Every Meal time leads to more foods being eliminated from my diet, it is hard trying to find things I can eat that doesn't burn or hurt going down the throat. Coughing up mucus that irrates my throat as it slides down is beyond annoying.  People wonder why I work it is an escape from the pain, I am hoping with the start of track season will help to alleviate the attacks.
  
  I am hoping that today and tomorrow I can somehow recharge for the 1st week of work in the new year that is usually slow.  Right now I am sitting in my lazy boy waiting for the sleepy stage to come and go that comes with my medicine.  It usually comes at the 1.5/2 hour mark, close the eyes for about 15 to 20 mins then bong,..bong...full speed ahead.for the next four hours.  This means I have to plan my day very carefully so I can get stuff done and get a few power naps in.
  
  I hoping that this new year will bring a vacation from Sjogren's.  This week I will be looking for a humidifier for my room and den to help out because as soon as I hit the pillow every mucus membrane goes dry.  
  
  
  
  
  

• Thursday, December 29, 2011 8:40 PM, EST

  One Crazy December

  Sorry it has been a while since I updated, trying to get back on track
  The Good and the bad one crazy December:
  First: Good news still NED
  Bad: Car gets totaled
  Good: I was driving a Toyota Corolla damn good car holds its retail value and the car absorbs impact very good
  Bad: No car for almost a month since a week after the accident I went on vacation and it being the holidays it took a while for the bank and insurance company to get everything settled.
  
  Christmas was great was able to have fun in Orlando and spent a couple of days in J’ville with some of my crazy cousins. Funny how a demo kinetic 360 game with only two songs can keep a 15 and 7 year old busy for an entire day. It would have been better if my immune system wasn’t in full blown war with the all the mucus membranes. Dry mouth and throat is the least of my problems, the parotid gland is swollen once again and little red pimples have popped up over the swollen gland. The dryness has led to more liquids which means lots of visits to the bathroom at all hours of the night. With limited work being that only one team in town means instead of taking my pills twice a day, it is now three times a day because no work allows my brain to register pain.
  
  During some internet research trying to see if there is something to relieve the pain….no luck so far. Need to make an appointment with my ENT this week so hopefully he might know some magic pill or really anything to get the gland to play nicely. I have found that the muscle relaxer I take for the left pectoral muscle can adversely affect my parotid gland. This means a choice dry mouth or a tight painful muscle…..yeah I am not too keen on returning to the very tight muscle and pain that I had to deal with over a year until I had the exchange surgery. Since the muscle had gotten accustom to being clinched a week after the surgery it tried to go back to its tightness so the doc’s prescribe a muscle relaxer that is working, but could be affecting my other problem.
  It seems like I can’t catch a break once I think everything is going smoothly I get hit with something else. Cancer still in remission, car crash, vacation and no car for the most of December and on top of that I just put new tires on the car in August. Today was somewhat productive day the bank approved my car loan yesterday and today they found my replacement car, I wanted a 2010 but they found a 2011. It was suppose to be a Tuesday deliver but now a Saturday deliver, and one might ask did u pull the “C” Card (Cancer Card). Hell Yeah, first because it was taking forever for the car to be declared totaled, then waiting for them to pay off the loan from the bank….the loan I had to take out on my Car that I had just finished paying off to get my teeth fixed due to what we belived was the Chemo until the discovery that in fact it was due to Sjogren’s Syndrome. Well that is enough of the bitching and feeling sorry for my self, Life is a game that I seem to be spinning and traveling the route of OH Shit every three spins.
  
  Still have way to much shit spinning in the brain between home and work. Hopefully this weekend after I get my car I can get back on track before the big C comes a knocking. I have been reading updates from various web forums a visit regular and see how easy I have it compared to others. A lot of sad posts as three just passed on this month and several others fights are coming to an end and Hospice plans are being made. Other’s in their 20’s and 30’s finding there way to the site with the same question why Stage 4, some single, some single with young kids, and other’s married with young kids. All of us in the same boat, people around you not truly comprehending what ur going thru, some with some stupid ass relatives, but all are on the site to provide support for the fellow breast cancer sisters. Reading some of the stories makes me glad that I got lucky in the family and friends department, I read some of the post about sisters to mine, she was like tell them to give me there address and I will set them straight (aka beat the shit out of them until they saw the light..lol)
  
  Hoping that 2012 will be a lot smoother month, we will finally get to make some extra money by renting out our house on the coast. I will finally have my Playhouse on the coast, a place for me to go and escape. An when I say Playhouse, I really mean a playhouse, my train set-up, my dollhouses on display, my different dioramas and home for the toys I don’t have room for in my apartment. Yes, I said toys, as my sister puts it I have more toys than a toy store….lol…what can I say as I am typing this wearing a teenage mutant ninjia turtle one piece pajama set, kind of sad that it didn’t come with the feet..oh well, don’t worry I will find another that comes with the feet…my sister busted out laughing a few minutes ago when I walked outside in said pj’s to take the trash out…..I also have another teenage mutant turtle hooded fleece with sleeves that came from Spencer’s from my niece.
  
  
  

• Tuesday, December 13, 2011 11:38 PM, EST

  Crazy Life

  It has been a while since I posted been busy trying to get caught up at work and get ready for a long needed vacation. Nothing seems to be easy in my world, got good news that I am still NED, then the bad came. On my way back to Raleigh to go back to work to do paperwork while the floor crew moped and waxed the floor my car meets a truck hitch on a bridge. One minute traffic is flowing the next a little pick up is stopped, and my little black Toyota couldn't stop in time. Good thing that I choose a vehicle based on gas mileage and it’s high marks in the Crash testing done by government.
  
  Thankfully I wasn't hurt had no car for three days, luckily my sister was on her way back to NC, so I was able to drive her truck to work. We will now be using her truck for our trip to Florida to see Harry Potter World, maybe Lego land and NASA. I got to ride in the back of a cop car for the 1st time, and NO I was not arrested…lol…my coworker couldn't get up to the bridge to get me because traffic was backed up. We were able to talk the cop into driving me to the Ramada Inn, where TP and one of our student workers “Lil Wuf” picked me up.
  
  After we get back from vacation, I get to finish up some paper work with the insurance company so I can start my search for a new car. It will more than likely be the same car I had but this time with the Moon Roof, the one item I debated back in forth the 1st time a bought my car.
  I am still trying to best figure out how to properly manage my sjogren’s and side effects from all the surgeries and chemo. This weekend was a pain as I was hit with multiple flair ups severely dry mouth/lips/throat, sinus drying, and glands in pain. I spent most of the day hiding out in my den with my pain meds on board relaxing an playing on the computer.
  
  I have found if I get the right amount of sleep, a little bit of food, a nutrition shake, and a Mt. Dew and one Naproxen (when needed) and lots to do keep me busy, I can make it thru the day before everything hits me once I make it home and sit down for dinner in my lazy boy.
  
  Everything aches once the body stops moving, the joints start pulsating and the scars start throbbing, and some days the glands like to join the party. About an 1hr and half after getting home and taking my medicine, all is good, I then sign on to different breast cancer forums and facebook to see what is happening. I am not really into nor do I have time to find face to face support groups, because reality is most young stage IV patients are scattered through out the world.
  
  There is a local group of young adults facing cancer but very few are facing what I am Stage IV Triple Negative with Sjogren’s Syndrome on the side. Right now on line forums and facebook groups are working for me   Four to six hours later I take my 2nd set of medicine, break out my new Oral B battery operated tooth brush (dentist made me get it, got it on sale for $99) and then I climb into my wonderful bed.
  
  Life seems to be trying to throw everything possible at me in a short amount of time. Hopeful I can get back on track in the New Year, I still have a laundry list of items before I can hopefully relax. Gets a new car, finish setting up the track/soccer equipment room, cleaning my office from top to bottom, cleaning my spare room at home, etc……
  
  
  

• Friday, December 2, 2011 8:59 PM, EST

  I still have blood work to get down on Dec 6th, but the nurse Delma called this morning on behalf of my cool doc Collichio who happens to be on vacation this week to tell me my know the scans are clean....more to come later I am watching tv......
  
  
  

• Tuesday, November 22, 2011 9:01 PM, EST

  Life 3 months at a time

  Warning: Don’t Freak out or start emailing, texting, phone calls to me or my sister, she knows only what she reads below like everyone else.
  
  As the months go by I realize more and more why mom didn’t tell everyone what was going on during her battle, but looking back now remembering listing all those symptoms she had made me realize that I think she had the same auto immune disorder. I also have come to the conclusion she was at Stage IV as well right out of the gate.
  
  Living life 3 months at a time can be nerve racking at times, as scan day approaches as usual strange pains and aches seem to intensify. I knew there was a reason I didn’t adventure out too much because of the super power I achieved from Chemo, nose o matic, dude I can smell pepper being used 2 floors up. I have discovered people use way too much perfume and other “smelly” products, which mean Heidi can’t breathe due to the overwhelming smell and my lungs literally refuse to inflate. I went into a convenience store that loved to burn incense, I literally felt like I was drowning.
  
  Problem is I have to find a middle ground between my autoimmune disorder and my triple negative breast cancer. Cancer demands more rest, while the autoimmune disorder requires moving around (aka exercise) which I get from my work, that and its keeps my mind occupied. “Work/Exercise” means my body needs more rest, aka lazy boy time, and that is where the problem comes in too much relaxing causes even more issues, like aching and pain which usually hits hard on the weekends.
  
  This past weekend like the one before I tried to balance the two by going to the mall and flea market, didn’t work out so well. Flea market wasn’t bad because it was outside, the mall fatal mistake the smells alone could kill, actually ended up with a fever, not sure how high it got because I had took an oxy pill two hours before I took my temp and it was at 99.9.
  
  Pain pill requirement has shot up as well to two a night one as soon as I get in at 5pm with a muscle relaxer and the 2nd when I go to bed around 11/12 at night. Last night I woke up at 5am and had to take another since I woke up to the glands in my mouth throbbing. My entire back, ribs everything aching and some places a little sensitive to touch.
  
  The whole body feels out of sync, you can feel the body trying to fight off everything that is being thrown at it, from the auto immune to the cancer. Majority of my issues are due to the stupid autoimmune hopefully the scan on the 1st will come back clean like all the others. But, I am not sure this time around there is way more pain and this draining of my sinuses is getting ridiculous. I get to see the lovely rheumatologist on the 1st of December and get another CT scan and then get to see the oncologist on the 6th.  Right now the oncologist doesn’t think the breathing issues are cancer related, she says it sounds like asthma related, more than likely it is related to the auto immune disorder.
  
  It really sucks this stupid auto disease; it makes it difficult to eat with the dry mouth and throat. No appetite and a change in taste for once is actually making it easier to finally drop the pounds added by the stupid steroids from Chemo.
  
  This weekend I will get a longer break but driving is involved 2 hours down and 2 hours back for the holiday. Back to work for a week or two, and then vacation, back to work 2 days and then Christmas Break, somehow I need to work in a appointment with the ENT and another with the lovely dentist.
  
  
  

• Monday, October 24, 2011 7:17 PM, EDT

  Light Sensitivity

  Well if it isn't one thing it is another, this week when I finally get to slow down at work BAMMM....Sjogren's goes into an all out offensive attacking all glands in my head.....My throat and mouth have been bone dry with some help from the antibiotics which I have to take another round becasue the sjogren's once again is attacking my sinuses.
  
  My head felt like someone had my head in a vice and pressing really hard....which led me to sleep 12 hours on both Saturday and Sunday...it wasn't until Monday morning at work that I figured out why my head was still hurting after taking pain meds.....wait for it......another symptom has blessed me...light sensitivity...slide my shades on and BAMMMMM head hurt no more...so I am know sitting at home with one small lamp on TV playing one of my favorite shoes NCIS and wearing Shades as I type on the laptop...yes I am wearing shades.......my new look...the athletes are probably going to assume I have a hangover....lol...Really sadly no one actually noticed I was wearing shades...probably becasue we Equipment Mangers are know for testing everything that comes in, one day I walked around the building wearing Mr. Wuff feet and hands, spend a day wearing a Nebraska football jersey, put a wrestling heavy weight championship belt and modeled it in the training room almost causing the women's soccer players to fall off the tables laughing, awwwwww.....I just thought of something I am going to break out some swimming goggles with the reflective lenses instead of my sunglasses tomorrow.....hahahahah might even throw on a swim cap.
  
  Seriously I am turning into a Vampire next think u know I am going to need some bloodddd.....hahahahah....well it is getting close to Halloween...have to figure out what I am going to dress up as...a soccer referee or a Nebraska Football player...I know your thinking why Nebraska you work at State...a simple reason some idiot at Adidas sent me Nebraska 2012 samples which included a football practice top....
  
  

• Thursday, October 20, 2011 11:51 PM, EDT

  Life as a Stage IV patient

  Many have had someone close that has gone thru some form of cancer from Stage 1 to IV, some may have even been caregivers. Like many before and after me I have experience as both, looking back I remember when I was in college sitting in a Knoxville emergency room where my Aunt would be fighting Stage IV Ovarian Cancer.
  
  Two years after college after the start of my career in College Athletics I get a call that my mom just had surgery for……..wait for it…………..Ovarian Cancer. My mom like her sister fought to the bitter end both were fully aware when the end was coming. How you are thinking….the simple fact that the tables were turned instead of me saying are we there yet on a family car trip, to my mother asking daily her last Christmas when I was getting off so I could drive her home. The road map has already been charted by my mother and aunt who went before me; I have seen how their choices affected those around them.
  
  You may think you know what someone like me is going thru because your mother, father, brother, sister, best friend, cousin, etc went thru it, but you have no clue. Sometimes I wake up in more pain then when I went to sleep, my body feeling like get literally got hit by a semi truck. Having to force myself up, to get dress, and drag myself to work or to the lazy boy. After moving around for a while the body will loosen up and some of the pain will dissipate. Then I have to force myself to eat and down a minimum of five pills and hope they don’t get stuck in the back of my mouth or throat because it is so dry from the Sjogren Syndrome. Pain radiates as the food/pills travel down the throat to the stomach, some more pain as the food passes thru the digestive system. Muscles ache with a need a water but your stomach want allow it and it makes the dry mouth even worse with every sip. Why? Really only my body would have an issue with drinking water.
  
  What the doctor’s and I have learned is my body reacts the exact opposite of normal. Oxy doesn’t cause constipation it actually makes me more regular (sorry should have given a warning, I bet you just spit some water or spit out whatever you were eating…sorry). Mt. Dew hydrates me and water makes me up chuck.
  
  You struggle to concentrate fighting not only Chemo brain but the sjogren’s as well. Finding new books to read so you can escape into fantasy, writing stories having to use the computer instead of writing like prefer because your hands cramp and they are swollen, coloring in short bursts giving your hands at rest while admiring your handy work.
  I am part of a group of women who are the forgotten ones in the world of cancer, in the month of October all you hear is about awareness and celebrating those who “survived” how about talking about the 40,000 women fighting a daily battle just to live.
  
  There are really no local support groups because people in my boat are shunned or asked not to talk about there mets in breast cancer support groups. Why?......because it scares the SHIT out of the Stage 1’s to 3’s, we represent their worst nightmare. Yes they may have some side effects depending on there particularly regiment and how there body handles the treatment, but us 4’ers have to deal with until the day we die there is no end to treatment. Several groups Metavivors http://www.metavivor.org/, http://mbcn.org/, and http://www.lbbc.org/, there is a private online message boards is where many of us talk and lean on one another, but actually having local support groups is rare except few that happen to live in cities like New York and San Francisco.
  
  Then we have the over kill of October which should be orange and black the colors of fall and Halloween but we get Pink, Pink and more pink…..
  “At other events, metastatic patients "hear about women who are surviving and celebrating, but they are women who every day have to summon the strength to overcome fatigue and all the other side-effects," says Karen Neyer, an oncology social worker with the Cancer Support Community. "They're living with cancer and going on with their lives every day."
  
  Much of the recent discussion of "pink fatigue," including the backlash against what's become known as "Pinktober" and "pinkwashing," has come from women with metastatic disease. Most October breast cancer events — from fundraisers to walks, runs and relays — are "all full of hope," says Sally Drees, 42, of Des Moines, Iowa.
  "I don't want to be a big 'Debbie Downer,' but I don't have a ton of hope," says Drees, whose breast cancer has spread to her ovaries.
  "I wear the pink ribbon when asked," says Susan Niebur, 38, a mother of two young children who receives daily radiation therapy to treat the spread of cancer to her bones, as well as regular doses of chemo. "But it doesn't fit."
  (http://yourlife.usatoday.com/health/medical/breastcancer/story/2011-10-19/Women-with-advanced-breast-cancers-feel-left-out-forgotten/50831096/1)
  Another thing is the money that many of these walks goes to cover the cost of the event and to awareness not to actual research to find a cure or better treatments especially those fighting Stage IV. Some companies are downright selling pink items to make a profit and not a damn dime actually goes to awareness or research.
  
  I happen to be lucky to work in an family orientated environment that helps me continue my daily battle a place that is use to Cancer and Stage IV. I also have a large extended Family that unfortunately is use to diversity and rallying around family members in need, not only my mother, my aunt, my 16 year old cousin (she passed away from ALS), myself, my older cousin and my eldest Aunt. Without family and friends the road would be a rougher ride.
  
  
  

• Tuesday, October 18, 2011 6:18 PM, EDT

  Clarification of Monday trip to UNC

  It has come to my attention that I need to elaborate on my latest adventures to land of blue.  First off let me make it clear I DID NOT HAVE EYE SURGERY......Now as many of you know from reading my blogs that I was officially diagnosed with Sjogren's Syndrome.  http://www.eyes.com/sjogrens-syndrome.html.
  
  In a nutshell my immune system is attacking healthy cells and tissue, the mouth and eyes are the first to be attacked, basically "the mucous membranes and moisture-secreting glands of the eyes and mouth often are affected first. As a result, people with the condition do not produce an adequate supply of tears and saliva, resulting in dry eyes and a dry mouth"
  
  This is why I had to drop $21,000 on my mouth to the dentist to fix the damage the tag team of Sjogren's and Breast Cancer did from 08 to 11. The plan of attack for the eyes was first to go the more natural route taking 4000iu of fish oil everyday and using eye drops (fake tears) my eyes are so dry that this didn't help.  The 2nd battle plan is to insert a cork into the tear duct (the lower tear duct) it is called a Punctal plugs to slow down the draining of the tears to help lubricate the eyes.
  
  Early diagnosis is very important because Dry Eye Syndrome causes the tear film to become unstable, with the loss of water resulting in the progressive deterioration of the ocular surface.
  I will go back in two or three months or sooner if the tears began to overflow or the plugs irritate the eyes. If neither of these happen the next step is to make the blockage permanent meaning they cauterize the tear duct closed.
  
  In other words I'm Fucked, I have every single symptom of Sjogren's from the dry mouth, dry eyes, dry skin, dry throat (causing eating problems like it hurts to freaking swallow, on the bright side I may finally lose some weight), lets not forget the damn fatigue, etc.  I have attached some links
  
  http://www.sjogrens.org/
  http://www.livingwithdryness.com/sjogrens-syndrome-treatment.html
  
  I am still trying to figure out my new life with not only Stage IV breast cancer but Sjogren's Syndrome both being grounds for full disability according to the Social Services Disability page.  I have to figure out all the limitations I have, fatigue is my biggest enemy along with providing enough nutrition for my body to properly function.  I have to make sure I not only get enough sleep but that I move around (exercise) to decrease the pain/swelling in my joints.  I have discovered too much sittting or sleeping hurts way more than moving around. 
  
  This is why I still work, work helps to keep my mind off the biggest battle I have or ever will face the battle to LIVE. Don't get me wrong I do sometimes think about going on disability and sitting at my home on the coast with Tonya watching movies all day, playing Playstation 3, talking to one another on facebook using are laptops as we sit 5 feet apart or discussing the latest books we have read, while yelling out the nieces and nephew we more than likely would be watching, making stupid video's using remote control 4 wheelers with my barbies as Morgan provides voice overs....oh so much the two of us can get into.....planning Halloween and decorating in July...ummmmmmm
  
  
  
  

• Monday, October 17, 2011 8:25 PM, EDT

  Plug in the Eye

  As usually leading up to a scheduled trip to UNC Cancer Hospital everything seems to start hurting at once. I woke up Sunday morning feeling like I had been partying all weekend and passed out on the bathroom floor. Every muscle aches more than likely demanding water but the body parts required to full fill that request objected strongly too that substance. Only one substance is able to pass the lips thru the mouth down the throat and into the stomach and it’s called a Mt. Dew. I actually tried to sip on some water because my mouth is like cotton and it has spread down my throat. It literally hurts to swallow; I have to make sure liquid joins the food to make it easier to slide down the throat.
  
  Hospitals also make me very sleepy, you would think since I was only at work 2 hours, I would have more energy, not I was lucky not to fall asleep driving back to my apartment. I have already taken a few 10/15 minute cat naps as I sit in my lazy boy, trying to ignore the irritation of these damn plugs they put in my eye. The right plug went in with no problem, but the left one he had to keep jabbing to get the plug in and my eye is very pissed off at that.
  
  There is some new pains that have cropped up, that I need to note and email the doctor about, I think most of it is due to the fact I have done increased lifting at working over the last month. I also need to work on my concentration, funny how the sjogren’s syndrome symptoms mimic those from Chemo. Not only due I have to combat my Chemo Brain but literally every single symptom of sjogren’s is in full blast mode dry mouth, difficulty swallowing, thick/stringy salvia, hoarseness, big time fatigue, dry mouth and throat, joint pain & swelling. I have discovered that I need to take both the oxy and naproxen in order to stop the pain, the naporoxen knocks out the swelling but does nothing for the pain, the oxy knocks out the pain but does nothing for the swelling.
  
  
  

• Sunday, October 16, 2011 5:27 PM, EDT

  Pain, Pain, go away come back another day

  Why is it that the day before you have to go to the Doctor's office everything and I mean everything has to act up.  I got up this morning at 850 with every joint hurting, every scar hurting coughing up the mucus draining from your sinus, the eyes, nose and throat dry.  I slowly got dressed and was out the door off to Bojangles, for breakfast then to the office.  Thank-fully I prepared everything the day before so I just had to roll the uniforms in the locker room and hang them up, becasue I had to take the powerful pain pill instead of the naproxen.
  
  Today took alot more energy out of me than normal finally back at my apartment sitting in my lazy boy and just took another pain pill.  Tomorrow I will get an hour in or two at work before I take the 20 minute drive to UNC to spend basically the whole day.  I will get to go to the Cancer Hospital to have the nurses flush my port, then go to billing to make a payment on my bill since it wouldn't let me do it on the phone, the get something in the hospital cafeteria before heading over to the ambulatory center to see the eye doctor.  I thought about gong back to work but since my team that practices in the afternoon is off, I will go home instead.
  
  It looks like I will have to talk to the ONC and the Rheumatoloisgt about the pain and swelling.  The only thing that works in the Oxy which is my night time medicine and weekend meds.  Problem is today even the Oxy is taken a while to start working and only last 3 to 4 hours before the pain begins again.  I know a lot of it is from using muscles that I haven;'t used since before my exchange surgery in Feb of this year.
  
  I really need to get me a new lazy boy, will need to see if big lots still had the one with the cooler and test it to see if it is comfortable since I spend a lot of time when I can't sleep.  I also need to get a small fridge/freezer/microwave unit, not that I am lazy but my body can't take going up and down the stairs in my apartment.  I am about to go up again to get a drink and to take the dishes back up from my dinner, just took a naproxen as well to see if that helps with the pain. 
  
  I was reading another site/blog and it was talking about a full body massage, I think I need to look into that, need to ask Dr. Collicho if she knows any one.  I will definitely be soaking in the tub with epsilon salt today, thank-fully tomorrow and Tuesday will be lite days at work since no one except XC is going in the morning on Monday and Tuesday.  .
  
  M
  
  
  

• Friday, October 14, 2011 10:45 PM, EDT

  Really

  Why is the days leading up to your doctor appointments more symptoms decide to show there face.  I have an eye appointment Monday afternoon which means its Friday and my eye's are burning.  On top of that the dryness has now made it to my throat.  I sort sounded like a froggie this morning with my cracking voice, and fatigue that decided to try and slow me down today.  The water I was sucking on seemed to make the dryness worse, even though all the info you read states to sip on water to help moisten the mouth/throat.  It really does hurt when you food goes down when your throat is dry as the Sahara Desert. For some reason I am starting to itch and once you scratch one spot six others pop up.  
  
  On the bright side my hands are drying out as much, why because we no longer use latex/powered gloves in the equipment room.  I purchased some nitrile gloves to see if I was the latex gloves that was drying my hands, apparently it was since I have been doing a lot of laundry this month.
  
  Monday I will get to dress up in all red and make my way to UNC to spend the entire day at the hospital.  I get to make an appearance at the Cancer Hospital to get my Port flushed, then go to the main hospital to get lunch and then make my way over to the Ambulatory Center to see the eye doctor. 
  
  Five to one I will get smurfed again and figure out what the next step is since I refuse to use eye drops and there is no way in Hell they are going to cauterize to my tear ducts, when my eyes can't stand drops being put in them you are going to aim a lazer at it, I think NOT.  Even my ONC was like Oh Shit when I told her what the eye doctor was saying.  I don't think he realizes that I am also a Cancer patient not just a sjogren patient.  I still have to make an appointment with the dentist to get another damn root canal, I may just have the damn thing removed since it is the last tooth in the back. 
  
  My vampire canine tooth that is riding high could use a little extra room to drop down, becasue apparently I have a really small mouth (go ahead and make your cracks cuz).  Apparently I am suppose to be using kiddie brushes the adult one's are too big for my mouth (insert joke). Well enough bitching for one night, might try to sleep but guess what I am not sleepy like I was before I left work.
  
  I need to schedule some time to go to the fair, the movies, florida, california, vegas, europe, hawaii, austraillia,....hahahahah....I think I need to play the lotto so I can go to all these places.  Carrie and I sort have the Florida trip planed I think that will be my first actually vacation.  Well time to get some ice cream.
  
  
  

• Wednesday, October 12, 2011 11:21 PM, EDT

  Meaning of Stage IV

  Being Stage IV and NED doesn't mean the Staging of you Cancer Status goes down.  Stage IV is permanent, this is some thing those without Cancer do not understand.  Yes, I am not currently taken Chemo that doesn't mean my fight is over, its like being in the eye of the Hurricane, everything is calm until the back end of the hurricane whips around to knock you on your ass.
  
  It could be decades, weeks, days before the most aggressive form IDC (invasive ductal) TNBC (triple Negative Breast Cancer) that I have to reappear.  It is living life in 3 month increments, trying to find the right mix of medicine to keep the pain in check.   Always wondering if the new pain you feel is a new metastatic site or is it the sjogren's syndrome acting up.  Doing things to keep your mind off the pain that radiates literally from every single part of your body from the tip of your nose down to your toes. 
  
  As my doctor said I am the only Stage IV patient she knows of that is currently not taken any Chemo.  A side note tomorrow is officially Metastatic Breast Cancer Day.
  
  "Stage IV breast cancer can be treated, but it is considered incurable. Depending on the type of tumor, patients may live for many years — working, raising children, starting nonprofit foundations, doing yoga and even running half-marathons.
  
  But theirs are not pink-ribbon lives: They live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World."
  
  http://www.nytimes.com/2011/01/18/health/18cancer.html?_r=1&pagewanted=all
  
  
  
  

• Tuesday, October 11, 2011 12:19 AM, EDT

  Reflections

  In the mirror u look to see the once thick mane of hair you had just over three years ago now is thin, the only scars you had where your knees and toe.  Before that time you only had four surgeries that spanned over a 29 year period.   That would all change in the year 2008, it’s now 2011 and seven surgeries later scars hidden beneath a red, black or gray shirt every day.  Every day and night is a reminder of over two dozen treatments that pumped poison in your body to kill the cancer cells that had invaded your body, 31 days of Radiation and a surgery to remove the largest tumor that one resided in your left breast, all this due to a screwed up a gene.  The only reason you knew about this gene was because before you both your mother and your aunt had to experience the same thing.  You would find out that your Aunt at your age had breast cancer back then they did things different, she survived to her 50’s only to be taken by Ovarian Cancer. 
  Then you get your first full-time job, then you receive a call that your mom in her 50’s has ovarian cancer, because her stubbornness we find out that your family had a dirty little gene.  Everyone thought mom had beaten the cancer little did they know she had Stage IV, to the family and the outside world she was still the bubble little firecracker running around the accessories department in Wal-mart.  Mom like all Parker’s are stubborn and keep things to themselves, due to the amount of time my mom spent at UNC and the fact she was tired of sleeping on a blow up mattress , I had to upgrade to a 2 bedroom apartment.  She never talked about and refused to allow any of us to go to her Chemo or Radiation treatment.  I think most of us thought the hospital didn’t allow people back, yeah I would find out that was not true.  She never said anything but she would before every appointment have me type out her symptoms and questions.  I would type them up on my computer and print them up all the while keeping what I knew to myself, which would end up pissing my sister off because she too had no idea how bad it was.
  Like my mom I prefer to go to treatment by myself but I made that choice after allowing my sister to come to a couple of appointments because neither one of knew what to expect. My sister would be doing a food run when I have the fastest allergic reaction to Taxol ever seen.  I learned from the aftermath and devastation the family felt when my mom past that some things you can keep but it is best to make sure everyone knows what its like, and get a little sense of what their sister/aunt/cousin went through during her short battle with Stage IV ovarian, I still remember sitting at my desk behind Bem when I got that phone call, me and my sister that my mom had just gotten out of surgery at UNC and that she had ovarian cancer.  Thank-full it was the summer; I would spend all day at work then drive up to UNC to spend most of the night until she returned home.
  I knew the gig was up when instead of going on there Alaskan Cruise my parents went to Tennessee instead for the weekend and then my Dad dropped my mom off at my house before heading back home.  I drove a couple times in the summer but the Parker in her wouldn’t let me take time off work.  Bright and early I was droped off a work and mom would drive the 30 minutes to UNC for treatment, to this day I have no clue what chemo she had, I know she had radiation.  She would still manage to have dinner ready when she came to pick me, how I have no idea.  Towards the end I think around November she would go to UNC for treatment then come straight to State, where she would curl up on the sofa in my office, we she would sleep until I got off work.  We would get home and she would make dinner even if you told her to sit down and you would do it.  Then she would curl up on the sofa and take another nap.   I knew the end was near when every day for a week she asked when I was getting off for Christmas.  I went ahead and took off early to drive mom back home the home where she could be a peace in the home that she built.  Her death would in many ways bring the family back together that had drifted apart after Grandma died.  Now the fourth youngest cousin on the Humphrey side and the seventh youngest on the Parker side, (for those not related my mom had 15 brothers & sisters and my dad had 10 so there are a lot of cousins) is traveling the same path but this course is Stage IV Breast Cancer of the Triple Negative variety.  This means only Chemo can hopefully control the cancer that had made it to my lungs, 2 lymph nodes and my liver.  With my dx it was a real wake up call for a lot of family everyone had been putting off finding out if they carried the gene, but if the baby of the family got then everyone was vulnerable even the guys.
  If cancer wasn’t enough all those crazy side effects I was having during Chemo wasn’t from the poison it was the sjogren’s syndrome kicking in, like cancer was enough an autoimmune disorder had to be thrown in the mix.  What sucks is the only thing that can really treat it/keep under control is to take something that suppress my screwed up immune system, problem is that screwed up immune system is most likely what is keeping the cancer at bay and me enjoying NED (no evidence of disease).  I wouldn’t exactly call it enjoying no chemo I have good days and bad days.  Good days I may be totally engrossed with work that I don’t notice the pain, but the ends when the day comes to a close.  A big thing was sjogren’s is moving around the more you sit the worse the symptoms, but my body do to the beaten it has taken from the cancer needs to rest which makes it difficult to balance my body’s needs.  Too much rest it hurts not enough I barely function, still trying to find middle ground.
  I am sitting in my crappy Lazy boy with my favorite blanket, I really need to find a couple more tickle  blankets, a good small one to put in my treatment bag, a good one for my office at work, one for the sofa and one for the lazy boy so I don’t have to drag the purple one around.  Right now my skin is being very sensitive, the blanket feels a little ruff, not my favorite part that I like to run my fingers thru which is good.  My finger tips are hyper sensitive it was crazy today, I felt weird sensations  as I did laundry and my finger tips are even being sensitive.  I think I need to put another layer of clear polish on them to hopefully make them a little bit harder. 
  
  
  

• Saturday, October 8, 2011 8:44 PM, EDT

  Longing for the days of no pain, you think you have gotten rid of one pain only for another to raise it’s ugly head. I took a long overdue soak in epsilon salt in hopes of reducing the swelling and aching of the joints. Currently typing with the right hand the left hand is not very happy the tendons in the fingers hurt with each stroke of the keys. I have been wearing the wrist guards most of the weekend and as soon as I get home from work, I may need to look at wearing them during the day as well. Went to big lots to see if they had a weekly pill dispenser/divider, didn’t find one I plan on stopping by the drug store before going to work on Sunday. Need to start making sure I take my 1,000 daily Vit D, 4000 iu of Fish Oil, Amoxicillin (antibiotics for sinusitis), Flexr (muscle relaxer), Naproxen (500mg 2 daily) and then my Pain Meds at night. Not sure how much longer I can swallow all those pills because my mouth and throat apparently don’t like them, damn dry mouth.
  
  The muscles fill better after the soak, wish I could take one every day but it’s bad for my skin, because it dries it out, damn Sjogren’s. I just tighten up the wrist guard so I can type with my left hand, damn brain can’t remember if I took my 2nd Oxy pill. Also need to start using my skin lotions for the outbreak on my elbows and right knee, getting a little cross eye from the flexr…lol. My skin is all dry now from my 30 minute soak in the tub. Relaxing in my lazy boy that hopefully I will be able to replace soon, I got my current one a year in 2007 and it has seen better days. I think I have slept in it more than I have slept in my bed especially after my BMX.
  
  Another day to sleep in but not too much or it will screw me up for the entire week. Both soccer teams have afternoon or night practice on Sunday, meaning no alarm clock needed in the morning. I may even catch a movie at Mission Valley before coming in; have to finish the game laundry from Friday night’s game. Did a little rearranging and emptying of boxes today and did half the laundry before leaving, had to make sure the training room had powerade towels and weight room towels. Still have to figure out where all the towels in the coaches locker room are going, use to have two stacks for both now we have just a half stack for men and none for the women, had to break out 14 new towels.
  
  Glad to still be able to work and have a relatively “normal life”, besides having to spend my days off from work at the doctor’s office. I got a few more books to help the mind to relax since it has been in a constant overdrive mode. I need to plan a road trip to the mountain’s sometime this year and go on the back roads, stopping at odd ball places to take funny pictures.
  
  
  

• Saturday, October 1, 2011 12:40 PM, EDT

  Uncharted Waters

  The UNC doctors are still scratching there head on exactly how to categorize me, I am the only patient they know that has Stage IV Triple Negative Breast Cancer that doesn't need on going Chemo.  Some patients need to take a break to give there body a rest, then there is me, one of the youngest Stage IV getting treatment @ UNC.  I would continue to perplex the doctors becoming the patient who had the fastest allergic reaction to Taxol with literally just two drops from hte IV, really freaking out the nurses.
  
  I feel like I am on Cheers where everyone knows your name, I am a fixture everyone knows who I am and my occupation and that actually started on my first visit.  I would find out that are Head Trainer had talked to one of the Doctors when I returned to the Hill for them to figure out what to do, also the fact Coach Yow was getting treatment at the same time helped as well.  It was a little weird yes I was wearing State gear but literally the entire staff new my name. Now I am the favorite patient, I have learned that there are a lot of State fans that work at the hospital, higher percentage in the Cancer Side, main hospital are the true Carolina Blue fans, who unlike there Cancer Center counterparts can't believe I have the balls to roll up to UNC decked head toe in State gear.
  
  I was the Chemo patient eating candy, eating 3 course meal and chugging a Sunkist while playing on a lap top wearing Red.  The UNC docs have official established I am allergic to Carolina Blue and as of today have declared that Wolfpack red with a little assistance from yet another disease Sjogren's Syndrome puts me in uncharted water and is keeping me NED.  My ONC thinks my love for my job plays a factor and my sunny disposition.  Nurses and Doctors alike keep tabs on my visits to see when the next time I roll up, I am the laugh you hear from ten doors down, the idiot on the stool rolling up and down the hallways, the one that has the nurses rolling as I update them on my latest adventures since my last visit.
  
  At first my ONC was going to wait till springtime to scan me again, since I have appts. every month in various but I think she got overruled.  Waiting for Sandee to send my an appt to get my port flushed in October and then get my scans the first of December when I see my Rheumatoligst.
  
  
  
  
  
  

• Sunday, September 25, 2011 12:18 PM, EDT

  Pain, Pain go away

  After a very long month with practices from 6am to 6pm and 6 home games plus 1 alumni game, I get a day off, by orders of the boss.  Actually it turned to a day and a half, left work on Saturday at noon becasue the eye lids where getting very heavy, after getting the laundry washed, power ade towels for the cold whirl pool done, and both wrestling and soccer gear out. 
  
  Got home sat in lazy boy and went to sleep not a good idea, don't get me wrong the sleep part was good but the effects of not moving for more than 5 hours of sleep is not good.  I had a 6.5 hour nap on Saturday woke up in time to catch up on all my shows, then went back to bed for another 10 hours. I am defiantly going shopping in November for a new lazy boy, I have been rotating between the lazy boy, bed and sofa to sleep when I can sleep.
  
  Yeah my entire body is not very happy when I finally rolled out of bed, everything is acting up and the temperature control panel is apparently broken, the glands in the jaw are swollen and backed up, and the sjogren's has gone to super overdrive, yeah forget Naproxen had to go straight to the good stuff.  
  
  The down fall of this Stage IV crap, stay busy don't think about the pain, try to relax and the pain comes back in full force.  Then I check  the mail this morning, notice #2 from UNC demanding I call the 866 number a make an appointment, they must really need some red up in that joint.
  
  October apparently is going to be the month I get to hang out at UNC way too much, already have an eye appt and plastic surgery appt, now I will have to add another visit to the Cancer Hospital.  Well that is enough reminder of that crap, Oh wait its almost October that means daily reminder with everything pink, I may have to take Christy advice and make some smart ass tee's up.
  
  Good thing I have a pile of work that needs to be done before the sun rises at work on Monday morning.  Time to make some athletes happy, Swimmers are finally gone to get some clothing, buy W soccer washable markers since they like to draw on them selves before games and now three of there uniforms have sharpie marker all over them, hang some m soccer jersey's up, move Raleigh relay tees to cage and put current gear on shelf, install the new mack daddy heat press, and so much more.
  
  I think I need a full body massage or a trip to Hawaii or some tropical location.
  
  
  

• Tuesday, September 20, 2011 11:42 PM, EDT

  Long days with little pain..

  Benefit of long days at work it keeps the mind off the reality of life with Stage IV.  It almost feels pre 2008 when I didn't have cancer and had all the energy in the world.  Fast forward to 2011 and I am lucky to have the energy to make it 9 hours day, since I am limited on what I can eat. 
  I have learned that I will need to start buying cases of Ensure once pay day come.
  
  I am pleasantly surprised that I don't have more pain, and that if I work a full day the oxy pill knocks me out instead of winding my up like the energize bunny. I also learned that my alarm clock sucks, I sleep right thru it but the alarm on my phone scares the shit out of me and wakes me up.
  
  Once October gets here I think I need to get another x-ray of my ribs in the area that was cracked previously.  I think that its just the skin stretching from the implants and using those particularly muscles that haven't been used much since my exchange surgery in Feb. The way it goes with me I have pain they can find nothing, I don't have pain and apparently have broken ribs, go figure. 
  
  I also need to start using my cream on my elbows and knees which are breaking out and the tight gloves need to come out of retirement.  The hands are no longer being dried out from the gloves, since the training room got on latex, so I think i can add latex allergy to my list.  I  still have some skin peeling issues and it looks like some swelling in the fingers.  I plan on wearing some S/M gloves tomorrow to get the swelling down, need to start wearing my wrist guards at night as well.

• Sunday, September 11, 2011 8:19 PM, EDT

  The eyes

  I have come to the conclusion the artificial tears, I am now required to use are pointless and useless.  Good thing the bottle wasn't heavy enough to break anything as I hurled at the television/PS2 & PS3.  Yes Tonya I know throwing things at the sacred items is forbidden, but I was pissed.
  
  The damn crap burns, my eyes which refuse to stay open in order to put them in and for what the shit does nothing the eyes still feel the same.  I still got to get the fish oil, which is more than likely going to be useless as well, the next step I don't my body/eyes is going to allow it, it involves soldering the tear duct shut. 
  
  Yeah you heard me and you are more than likely thinking the same thing my ONC said DAMN.  Considering my body has decided it is NED and Happy and gets really pissy even when  the dentist is messing around with the teeth which makes me have to load up on pain pills. Oh yeah I have to go to the dentist again, I think this time she can pull the tooth that side of the mouth needs more room anyway and the tooth is the last one in the back.
  
  

• Sunday, September 11, 2011 8:19 PM, EDT

  The eyes

  I have come to the conclusion the artificial tears, I am now required to use are pointless and useless.  Good thing the bottle wasn't heavy enough to break anything as I hurled at the television/PS2 & PS3.  Yes Tonya I know throwing things at the sacred items is forbidden, but I was pissed.
  
  The damn crap burns, my eyes which refuse to stay open in order to put them in and for what the shit does nothing the eyes still feel the same.  I still got to get the fish oil, which is more than likely going to be useless as well, the next step I don't my body/eyes is going to allow it, it involves soldering the tear duct shut. 
  
  Yeah you heard me and you are more than likely thinking the same thing my ONC said DAMN.  Considering my body has decided it is NED and Happy and gets really pissy even when  the dentist is messing around with the teeth which makes me have to load up on pain pills. Oh yeah I have to go to the dentist again, I think this time she can pull the tooth that side of the mouth needs more room anyway and the tooth is the last one in the back.
  
  

• Monday, August 22, 2011 8:49 PM, EDT

  Smurffed by UNC doctor

  Had my first ever eye appointment, at least I still have 20/20 vision, that was the good only good part.  Just this last week the eyes started to really get dry and irritated once I started going outside more, yep I have very little tear production. 
  
  In order to see what damage I already had due to this Sjogren Shit, I got blue dye eye drops.  As one would expect my eyes where fighting the blue dye, Doc kept yelling look down stop closing your eyes.  It didn't work therefore my eyelids got dyed blue too.  I looked like a raccoon with blue rings around my eye, got most of it off but, as Christy from Human Resources said it looked like I went clubbing the night before and didn't get all the make up off before coming to work.
  
  I now have to purchase artificial tears and take 4000iu of fish oil and go back Oct. 17th.  If the eyes haven't improved talk is putting a plug in the tear ducts and then possible soldering the duct.  Yes I said your awake and the use a soldering iron to seal part of the duct...Really another day type surgery.
  
  
  

• Monday, August 22, 2011 8:49 PM, EDT

  Smurffed by UNC doctor

  Had my first ever eye appointment, at least I still have 20/20 vision, that was the good only good part.  Just this last week the eyes started to really get dry and irritated once I started going outside more, yep I have very little tear production. 
  
  In order to see what damage I already had due to this Sjogren Shit, I got blue dye eye drops.  As one would expect my eyes where fighting the blue dye, Doc kept yelling look down stop closing your eyes.  It didn't work therefore my eyelids got dyed blue too.  I looked like a raccoon with blue rings around my eye, got most of it off but, as Christy from Human Resources said it looked like I went clubbing the night before and didn't get all the make up off before coming to work.
  
  I now have to purchase artificial tears and take 4000iu of fish oil and go back Oct. 17th.  If the eyes haven't improved talk is putting a plug in the tear ducts and then possible soldering the duct.  Yes I said your awake and the use a soldering iron to seal part of the duct...Really another day type surgery.
  
  
  

• Friday, July 29, 2011 3:26 PM, EDT

  Surgery number...damn I lost count

  I have come to the conclusion the UNC Cancer Hospital apparently needs someone wearing a State tee there at all times. If the doctor could do cartwheels I think she would have she was thinking this was the end of NED, instead they find another organ to screw around with. Apparently it isn’t the liver that is acting up it is the organ attached the stupid Gallbladder that apparently has a ping pong ball in it. Apparently lack of appetite and skipping meals can cause gallbladder stones.
  
  So I win another Surgery by Dr. Amos right as soccer pre-season starts, got to love the timing. And if my appendix burst anytime soon its Rene fault for bringing it up on the way back to the apartment. He mine as well start signing the scars, I think I should make him where a state cap for this surgery, but I think that is against the hospital dress code.
  
  
  

• Tuesday, July 26, 2011 10:44 PM, EDT

  Got to spend an entire day at the hospital, why is every-time I need to get worked in for a scan, the financial person is the cancer hospital is off or on vacation, and the one in the main takes forever. I didn’t get in sleep and had to wake up at 630am, find four quarters to put in the tire, I need to replace on Saturday, and drove up to UNC Cancer Hospital.
  
  I get there and the damn Mt. Dew machine ate my change so no caffeine, get down to the basement for a chest x-ray and get a dumb ass technician. First he comes in the lobby and states my first isn’t until 9pm, and was giving attitude to the lady that checks people in. How she stayed polite to him, I don’t know, she pulls up the computer and says she was added at 430pm yesterday, which apparently is after this jackass looked at his work schedule.
  
  So after bitching for 15 minutes about his first appointment not being until 9, he calls me back, and as everyone knows I always where state clothes, half asleep and no Dew, the jackass says I have to take my tee off and put the gown on, which I have never had to ever at UNC when getting a chest x-ray because I were a shirt with no medal, no it was the fact it said Wolfpack Unlimited. An hour later dumbass finally figures out how to use the equipment, bitching the whole time about be sent over to the cancer hospital. Hopefully dumbass gets sent back to the main hospital and the girls will back on Friday.
  
  Then I finally get up to 2nd floor and get put in my room, five minutes later Customer Service comes in with a clipboard with a Wal-mart gift certificate. Apparently the person before me in that room must have been bitching about the wait time or something, I was like I just got here, damn I should have played along it looks like u bitch and get a gift card to Wal-Mart, going have to remember that. So the doc finally comes in with yet another Med student.
  
  Needless to say it didn’t take long for her to say Oh Shit, she said my Liver had never felt like this before but my scan was clear, not too long ago, she has the student feel as well, apparently it the liver is enlarged. She pulls up to read the report 6 weeks ago wondering if they had missed something then goes back through the files all the way to my liver biopsy in 2008. Where I feel the most pain is the location of the biopsy where the biggest of the tumors had been.
  
  I waited until 3pm as we waited for the State Health Plan to give UNC the approval, need less to say I was hungry, sleepy and bored as hell. I finally had the guy just schedule me for Friday morning at 8am, had to email the doc to get her to put me in her schedule,
  
  I had the student go in the Doctor workroom to tell her I scheduled the scan on Friday morning. Had to stop at Target to pick up my antibiotics for my sinus infection/draining that has been screwing around me sleep. As I am typing this that sweaty/muggy shit is starting to rear its ugly head. The big question is this tumor or sjogrens, because I am fucked if its sjogrens because the oncology doctors don’t want to screw around with my immune system which would be required if its sjogrens related. Depending on what the scan shows I may have to have another biopsy to make sure its still triple negative breast cancer and hasn’t changed to hormone positive, because that could change the treatment, meaning pills instead of Chemo.
  
  I left the hospital paying $8 to get out of the parking deck, pull into Target, $6 bucks for Amoxicillion, grabbed a bag of chips, box of granola bars and something to eat and finally Mt. Dew. Struggled to stay awake as I drove home made some food, finally took a pain pill, got a Mt. Dew and got comfortable in the lazy boy.
  
  Now I have to wait another 2 and probably a half a day to figure out what is going on.
  
  
  

• Tuesday, July 19, 2011 9:43 PM, EDT

  Quick you might want to check and see if I got a fever.  I finally found shorts that fit from the women's department in Target, so I have retired most of my men's to the knee cargo shorts I have been wearing, the one's Mom hated with a passion.  I have got several shorts some are too the knee but the are women's Bermuda shorts.  It has been along time since I found a good length short since most shorts the past couple of years have been Daisy Dukes, I will pass on those.
  
  I actually ironed my shirts and shorts matching them up with a shirt and stacking my work clothes.  Right now I only have one pair of athletic shorts I am wearing the same length as my nice shorts but with pockets, need to get a couple more of those.  I decided it was time for a change, what my Mom actually nagged about becasue I always wore athletic gear.  I still wear athletic shirts because it is a requirement but I now wear shorts that will bring a smile to my mom face. That and I need a belt to hold my utility tool, and box cutter.
  
  On to the lovely medically issues apparently my sjogren's is flaring up, I will have Damitz look at the roof of my mouth.  It looks like my ONC will need to e-script a prescription for an antibiotic for my mouth.  The glands are hurting to the point I took three Oxy, 3, cyclo and 1 Meloxicam, it don't hurt no more. But it took a while for the Oxy to take effect.  That is not only pain every scar has been twinge and hurting, folks I have a lot of those, both sides below the rib cage, scars across the chest, both knees and my right foot.
  
  It actually hurts more when I don't do move or lift anything, oh well and when I really get excited (which I have been know to do over the littlest things as my family will attest too). Fatigue is also trying to sink its teeth into me, I have discovered that I need to turn off the radio in order to fall asleep faster and reach REM.  I have started to wear my wrist splints to bed in hopes to get the hands to stop aching.  Slowly trying to reintroduce water again, have to take it slow so I don't start upchucking it again. 
  
  I may have to just drink shakes for a while since the roof of my mouth feels like its peeling, the gland on the left side is swollen and everything is burning my tongue.  I am eventually going to be forced to seat down with a nutritionist to come up with something.  Well I am  off to the showers so I can get up early to travel to UNC-Cancer Hospital to get my port flushed and see my plastic surgeon Dr. Damitz.
  
  

• Tuesday, July 12, 2011 9:05 PM, EDT

  Looking back and forward

  It’s funny how we forgot things when we haven’t done them in a while, like how many minutes too cook an ear of corn in the microwave? In college and shortly after I could tell but as are career advances we get more money and less time we eat out. A little bit of I could blame on Chemo Brian, hell I discovered this new syndrome I got comes with memory fog as well, but let’s be honesty I got lazy and went to KFC and got the already cooked ear of corn.
  
  Thank-full man invented the internet and a search engine, cooks.com has become my new best friend for microwave questions. My mother’s cookbooks and recipes help with the rest, me and Tonya need to get all of the family recipes together in a family cook book for us. Because I believe out of all the female cousins apparently only Tonya and I inherited the ability to cook like our mothers & grandmothers. Yes, Carrie you can cook some things and you due love experimentation. Now the rest of you fools, so let me give props to Christy how can cook up some seafood but the rest of ain’t got no skills in the kitchen.
  
  Forgive me I almost forgot Tina does have some killer skills in the kitchen particularly in the roasting of some good chicken; I haven’t forgotten the summer I crashed at your house for summer school.
  Well back to cooking, I was blessed with a fresh garden vegetables brought from my Aunt Phyllis. I just ate too ears of delicious corn on the cob, I have some collard greens (yes I said collard greens) thawing in the fridge.
  
  With a 24/7, 365 day job it is hard to cook meals when you go in work at 6 am (alright Chad it has been 8 to 9ish this summer but hey I am preparing myself for preseason) and getting off after 5pm. My wonderful Aunt makes precooked meals straight from her garden in freezer bags so I can easily deforest and warm-up when I get home for work, or I just take them with me.
  Carrie you will be impressed the apartment is spotless; I would say I was in a cleaning mood but no the apartment manager was coming in to do an inspection. Inspection was probably due to the fact of a recording I made of the room that has the hot water heater. Apparently I learned from the maintenance man that the cast iron pipes that were used in the kitchens in this complex have apparently been breaking. One couple failed to realize the pipes had busted water flooded there laundry room, the maintenance man is the one that finds, the couple was like oh we never used the laundry room. Really? So you luge your laundry over to the Laundry Mat when you have a free washer and dryer in your apartment???? Another dude hot water heater busts he was out of town came back went partying with his buddies came home plastered and failed to realize that foot of water in his apartment. The maintenance man notices the water flooding out of the apartment and has to wake the man up….Seriously even if I was drunk I would noticed I was wading through water to get to my bed.
  
  So much work to do this week, but the one thing all this cancer crap has taught me to take life one step at a time. Just finished outline a flow chart the boss needs by the end week just need to type it up, p-card statement need to be Arlene desk by the end of business tomorrow, track/xc practice tops need to be counted and taken to the screener to clear out the hallway, 227 shoes just for the women’s team are in transit and you can barely get a dolly thru the hallway.
  
  Gray containers wait patiently to be placed on the Men’s Soccer aisle then the rest will make their way to the track shelf, to increase our storage place. Uniforms are calling from cellar to be counted and sold to crazy soccer fans, quotes need to be turned in for the Soccer/track project, I seriously need a mini-mi to start working on all this stuff. But, boy does it feel good to finally feel like I was before all this cancer crap, running around, phone of the hook, non-stop action.
  
  Hopefully I will have the energy, sometimes when I wake in the morning my body tired and weak saying um no. But, once I start moving the pain gradually fades away as my brain switches to athletic mode, then when the day is over the pain sneaks back in, and the brain is still going full-blast. Now if I can just figure out how to shut the brain off at 10 pm and might be able to get enough sleep, I have learned don’t take the pain pill before bed it wakes me up. Orders, ideas, schedules floating thru the brain and the o crap I forgot to do ________, run through my mind
  

•  Tuesday, July 5, 2011 7:43 PM, EDT

  Really more prescriptions and dr. appts.

  Catching up some tv shows since my medicine put me to sleep most of the weekend so much going between work and doctors I have got behind on some of my shows.
  With my latest diagnosed of Sjogren Syndrome brings on more appointments, tomorrow I will visit the dentist for a cleaning and more than likely get a whole other list of items I will need to use.  I already have a container with items from the dermatologist, a bag with my pills and hopeful will not have to buy another box for what the dentist is going to want me to do, since she has just fixed all my teeth.   I was asked today if I had the pharmacist on speed dial, the answer is No but I got my ONC on email to express deliver prescriptions to the Pharmacist. But I am waiting for the girls at Target to say Damn what in the hell is wrong with you, by now they should know me by my first name like in Cheers.I shouldn't have to tell them name damn the amount of time I spend in Target I need a personalized shopping cart and my own parking space.
  I am now trying to figure foods since I really haven’t been eating because my stomach wants one thing my mouth can’t handle it due to the lack of salvia.  Lesson 1: Don’t add salt to vegetable it burns the roof of the mouth.  A big thanks to my Aunt who brought fresh vegetables from her garden most cooked and pre-packaged to make Heidi’s life easier.  Lesson 2: Sadly no more Bojangles it sets the mouth on fire.  Lesson 3: Pizza Sauce burns the mouth Lesson 4: Mt. Dew burns the tongue but I am willing to take the pain for know since I have yet to find a replacement that mouth & stomach can agree upon. Lesson 5: Even mild salsa burns mouth Lesson 6: Chips are no more, Popcorn I am willing to take the pain for now. Lesson 7: Bread is really BAD, talk about drying out the mouth even more.  I have a feeling more lessons will soon follow.  I feel nutrition shakes are coming to a fridge near me or as Chad calls it old people drinks, just because I tested out some Ensure one week.
  
  
  

• Thursday, June 30, 2011 10:12 PM, EDT

  Game of Life: Health Care Patient Road

  Like I didn’t already have a lot on my plate, and least it’s a relief that I am not going crazy there was something causing the pain it was inflamed salivary glands.  The ENT and Dentist were correct it was neither my teeth nor my ears or sinus, although the ENT suspected the gland but he chalked it up to my radiation treatment.
  Props have to go out to the best ONC at UNC Collichio who was correct in her suspicions and sending me over to I will never be able to pronounce Dr. Rivadeneira, the Rheumatologist, he too had to give props to Collichio for her deductive reasoning since she obliterated the cancer cells.
  I know have to add another wonderful doctor to my already long list, the eye doctor so he find something new to add to my list.  I have to say this is the shittest Game of Life apparently I took the Health Care Patient route on the board.  How much shit (medical issues) can one person get before they go bonkers.
  Emailed my dentist to tell her the dx and when should I schedule a cleaning.  Her mother the receptionist/scheduler emailed immediately back and was like NOW, and asked what my schedule was like; I told her it was flexible this month.  At least the drugs only cost me $14 bucks, but then I had to by some biotene spary, ACT-dry mouth wash, gum soft-picks and burt’s beees: beeswax lip balm which was around $30.  I will be saving the receipt because I am writing this off as medical expense.
  I am sitting in my apartment looking at all my drugs to make sure there aren’t any adverse side effects when mixing any of them; four bottles are sitting on the tv tray next to my lazy boy. I have a shelf full of creams in my room for my elbows, knees and fingers.
  At least one of them I only have to take for two weeks to get rid of the yeast infection I apparently have in my mouth.  That was the final clue Dr. R needed to officially declare it Sjogren’s. 
  There is a saliva test that an ENT could run but he said that with all the other evidence the ENT would say it was pointless it’s obviously Sjogren’s primary, He then felt the left Parotid Gland and it was defiantly swollen and inflamed.
  
  
  Sjogren’s primary means I don’t have Lupus or Rheumatoid arthritis at this moment.  I know have to keep an eye out for Lymphoma which I am now at a greater risk of developing.  
  Apparently this is common in families that Lupus and Thyroid disease run in families so thank-you very much Humphrey/Riggs Side.  Apparently you where jealous of the lovely cancer I got from the Swinson/Parker side that you felt it necessary to light up my life with something new to read about and spend my fun money on. 
  Dr. R wants me to read over two prescriptions’ that are supposed to increase saliva Evoxac and Salagen.  The other is Plaquenil which is a little controversial but has helped with those with sjogrens.
  I just glanced over at my pile of medical stuff for this year, it is out of control I have been slacking.  I know what I will be doing on Saturday getting that pile straightened out and making sure I get all my bills paid.
  So glad I got that I-pod since my dr. appointments are going to be more frequent.  I see the ONC every 6 months, the Rheumatologist every 4 months, the ONC nurse every 4 to 6 weeks to get my port flushed, few more appts with the Plastic Surgeon, get to see the eye doctor in August hopefully that will be just one a year like the GYN appts, I will find out how often the dentist wants to see me this month.  Oh then there is the Chiropractor every 2 to 4 weeks.  Somewhere in all that I have to work 60-80 hours week so I can pay for all these appts and medical supplies I will have to buy.  At least most of my soccer games are at night…not much sun.
  I know have to watch the amount of sun I get so that means I have to make sure I always use 50 sun tan lotion.  So cuzions don’t be picking on me when I am wearing the long board shorts and Long Sleeve light weight tops at the beach and on the boat.  I sort of missed a spot on my arm with the sunscreen and got a lecture today.
  On top of that I need to get the hinge on my laptop fixed, a new back tire on my car. Thank-God soccer is approaching fast which means overtime, so I can pay off my teeth and all my other crap.
  
  
  

• Thursday, June 30, 2011 3:47 PM, EDT

  I always wondered why I couldn't win a spit contest

  So yeah its official a gots primary Sjogren's Syndrome.  There was a debated between the doctors and they finally decided 2 + 2 = 4.   The fact I had the marker for it, a $20,000 dental bill, and it was until he noticed something when I yawned.....Hey do that again....and BAM ok its Sjogren's. So I get to see him every four  months and earn a trip to the eye doctor. 
  
  Apparently I am working through every possible specialist at the Hospital.  The Doctor joked I should move up there the amount of time I spend there...
  
  More to follow later......
  
  
  

• Wednesday, June 29, 2011 7:49 PM, EDT

  Sjogren's Syndrome

  
  

• Sunday, June 26, 2011 9:59 PM, EDT

  Great Weekend

  It still hard explaining that you are Stage IV and you will never be “cured” even though your hair is back you are laughing and having a good time.  It also makes you slow down and take a look around and notice that your life is speeding by like a freight train.  We are no longer the little kids trouncing through the neighborhood blindly following are fearless leader through all kinds of crazy shit.  Wading in water in the Sand Hole (for those who don’t know it was a dump in the neighborhood surround by a swamp) or should I say swimming since I was the runt half the size and age hanging on my sisters neck, and someone lost a sandal.  Thinking back what the HELL where we thinking there is damn snakes in that water and no telling what kind of chemicals got dumped in it.
  Memories that will last a life time when there was no cable (not that it was invented we where to damn poor to afford it) the only few rules:
  1.        Play Outside
  2.       Stay in the neighborhood
  3.       When mom (Aunt Gayle) Yelled you got 5 minutes to get your ass back in the yard for lunch
  4.       Back in the yard after dark
  Summer spent in the neighborhood with crazy cousins, mud tug a war, war games that Oakwood would always forfeit because the where scared of what we would due to them, Beach days with the entire family lined side by side down the sand at Emerald Isle or Topsail Beach, Mom (Aunt Gayle) in charge of a dozen kids dragging us to the beach or the famous movie day’s at the Cardinal when Jacksonville actually had more than one movie theater.  Piling all those kids in the station wagon the smallest one in very back, when seat belts and cars sets ummm we didn’t have those..Somehow we thought we were having fun not realizing Mom was actually teaching us things, taking us to Fort Macon, the Aquarium, teach us to be creative and independent and the importance of family.
  As we grew up some choose to stay in the neighborhood, some adventured out to the far edges of the county, or one to counties over, some moved briefly out of state only to find their way back, and some moving to the middle of the state.  Some never finished high school, some got a GED, some went to college and some got Masters Degrees. 
  Now we are the Crazy Adults sitting around talking like our parents with mini me’s teenagers running around reminding you that your parents didn’t lie when they said what until you have kids, pay back’s a bitch.  We realize that we have grown apart as we have followed different tracks in the Game of Life and how much we had benefited from the get together our mothers had their nightly card games, or crazy rummy cube, fish fries, a small group of our remaining Aunt and Uncles still do manage to get together  but the large one’s we had are sadly a thing of the past because Cancer stole the bubbly short little firecracker who was camera happy and documented all of our childhoods.  Since then us cousins have drifted even further a part, we got to know each other again and hopefully pass along what Mom (Gayle) and the rest of our Aunt’s and Uncles showed us while we were going up.
  We all no only a few of us can actually cook the great recipes that graced the table of get together, and we already no who the ones that will be stopping at Bojangles and KFC because that can’t cook worth a damn.
  I have to agree with Rene that the first Girls Weekend was good there was a small hiccup but we all still had a good time.  A thanks to Christy fore organizing it and from Phyllis H to allow her River House to be raid.  We do need to plan more and invite the boys all though we all know that the female cousins greatly out number the boys in our generation.
  
  
  
  

• Tuesday, June 14, 2011 11:54 PM, EDT

  Dew Power

  And the say sugar feeds cancer cells....shhhh...mine don't know that...hahahah....Mt. Dew Power wins again now I don't have to go back to the ONC for 6 months...Yes Asheston the Dew does the body good..
  
  I still have to go back every six weeks to get my port flushed...it crossed the docs mind only for a moment about taking the Port Out....my answer HELL NO, thats my lucky port people...don't get excited people and still have a list of other doctors that have my on there calendar....I will just have to email the ONC if anything is up..
  
  Spent the el birthday at the Katy Perry concert with sis and siscos...OMG that thing was funny...saw a DUDE in a leotard..a BIG dude with a blue wig who got on stage and danced with katy....then she pulled a southern gentlemen from the stands...receding hairline, not fit and had a white hair chest exposed when Katy pulled his shirt open popping all the buttons off...lol...and he complained about is and she was like don't worry I am loaded..made him look a way gave a peck on the check then said you got 5 secs to run cause my husband is back stage...through out we tortued poor Morgan who didn't get to go but her mommy did...she was one unhappy newly crowned high school freshman...as we texted and posted pics on facebook
  
  I can now focus on those 80 some boxes that line the walls of my office...the last minute orders that need to be made...and having the girls try on there uniforms and drool over the items that can't have until August...hehehehaeheh..mine.  Drinking another Dew before I crawl in the beddy by.
  
  stay tuned for further updates on the status of the Auto Immune Disorder coming up later this month...
  
  
  

• Monday, June 13, 2011 5:46 PM, EDT

  Time Zone Side Effects...did I say 30 boxes???

  Having Time Zone and Too long on an Airplane side effects.  Had a good time in Cali but damn it was cold next time lets go to Southern Cali.  I got home Saturday morning a little after midnight, went to bed I think 3am and woke up like 240pm, I would attempt to the math and tell u what time that would be west coast but my brain don't like math.  Then I didn't even go to sleep Saturday night, I attempted but failed to achieve REM.
  
  Rolled in to work at 8am on Sunday to be greeted by way more than 30 boxes.  I didn't realize there was more boxes around the corner and till I went to put the loops in the issue boxes.  Stayed a few hours to remove the stools and locks from M Soccer before the renovation starts, the boys closet locker room is finally getting bigger no longer will I be able to stand in the middle and almost touch lockers on either side with my finger tips. 
  
  Rolled down to Reynolds in Geiger new Golf Cart courtesy of someone who will remain nameless who broke his old one.  Got down there to open the Reynolds ER temp office and my damn key was bent.  Needless to say I figured a way in to get the pump so W Basketball could pump some balls. and that was my Sunday.
  
  Today was shot to hell before it ever began, email inbox malfunction meant W Soccer Camp Tee's wasn't received and had to have a rush print job this morning.  So for lunch I got to drive halfway to High Point, rolled up to exit 141 in Burlington to the Cracker Barrel to get the tees.  Got back to campus emptied to soccer ball boxes and HELLO 1980's, the girls would agree when the saw the colors on the balls. 
  
  Got the camp balls out of the basement, folded the towels for the coaches locker room, put there loops up, delivered a few boxes, got the Track coach to approve a bench for the boys shower area, put a request in for a mirror/hair dryer/more outlet station for the girls locker room, told Matt to install a bigger breaker since the girls love to trip it especially when there is 70 girls in two locker rooms with one outlet getting ready...and some genius puts in a breaker that trips when both locker rooms plug in one dryer each...Really its a GIRLS locker room people....Means lots of outlets are needed and a BIG ASS breaker because hair must be perfect before and after games and for some game day requires make-up no matter how much Chad tries to get them to stop, since mascara and foundation on a white uniform is a pain in the ass to get out....lol
  
  The day is not over my sister is flying in the week for my birthday and me double first cousin lets be frank my other sister is rolling up from the coast tonight or in the morning.  I  will be going to the airport at 1120pm to pick her up hopefully in bed by midnight and asleep before my head hits the pillow, work in the morning for two hours to get the towels washed for the training room and then off to UNC Cancer Hospital for my scan and the results, followed by lunch with one of my three free food cards I got, and then to the Katy Perry Concert. 
  
  As usual I have weird pains that really started on the 2nd leg of the trip, hoping it was from having to sit so long in the airplane. For some reason my digestive system doesn't like long trips from home.  It got to a point where I made a comment on the trip we need to start ordering my the kiddie meal.  On the way back in Dallas I got the Happy Meal, Jill said I just got it for the toy, lets be honest that was a factor.
  
  So far every time I think something is going on but the scans have be clean hoping this one is too.  Purchased biotene that seems to help but used the toothpaste while in Cali, but I think I need to stick with the synsodene for brushing and use the biotene mouthwash and spray.
  
  As usual my trip across enemy lines will require lots of Red with block S on them.  Not as enjoyable because since the NCAA has set up camp at UNC investigating they no longer try to pick on me, most avoid eye contact and don't mention anything athletic related, but the State fans that work there are a lot more talkative and there is more fans than I thought that work in blue country especially in the Cancer Hospital.
  
  Hoping a clean scan because I got way to much work to prepare for the Fall season my equipment room looks like a bomb was set off in it, at least my apartment is clean.  Noticed that the Clemson orange roof on the building gray and my new storage room for Track equipment is almost done, soon I will have to say goodbye to the pack rat and big green. 
  
  Hopefully with a OCD/organization master my sister with no transportation for a week might provide some much needed assistance in exchange for shoes and clothing.  Cheaper than hiring an assistant and more efficient than student workers and a hell of a lot faster, a week project a half to whole day for her to complete after she goes OCD on the kitchen floor the only thing I haven't cleaned yet. 
  
  
  

• Sunday, June 5, 2011 6:04 PM, EDT

  California...boxes...Katy Perry Concert

  Watching ice road truckers until Game 2 of Bama versus the Gators.  Lets see if the Gators can make more NCAA history.  Also been watching one of the shows I watched as a kid Baywatch...funny how the drastically the length of men's shorts have changed from the 90's to the 2000's.  Literally went from like 2.5 to 4 inches to 6 to 12" inseam in a decade.  Yet those pesky cross country runners will still sport those shorty shorts.
  
  Hopefully a week in California will keep my mind off my upcoming scans, Catching up with all the other equipment managers from across the country and see if Carolina Equipment Managers show up.lol....that ACC Equipment Manager meeting will be interesting, the last time Carolina only sent one to the convention which happened to my first in Kansas City, the poor boy was picked on the whole time.
  
  I have already printed out and highlighted the workshops that I want to attend, I have my w soccer binder and track binder with me so I can do my shoe orders while in Cali.  I will have a lot of work to do before the fall season, get lockers cleaned out/sanitized, empty issue boxes, change locks, inventory towels, heat press numbers on towels, sort & inventory all those wonderful boxes Adidas is sending me.  Finish  scanning files into the computer so I can get rid of some  files to make more room for the giveaway section in the cage. And its time to surplus those pesky Titan spikes to make room for all those shoes I'm about to order.
  
  Going to have to get the soccer girls to come in and try on there new uniforms...the have been asking since the day I took the intern position in the athletic department 11 years ago for a black uniforms...finally they will get there wish.   It was sad in the spring as the girls watched South Carolina in there all black Under Armour uniforms drooling over them, literally.....then I got the puppy dog faces...and the please...please...please can we get some.....Now I will her the bitching from past players the first time those bad boys are broken out, the last senior class to wear Kelme was pissed when they found out I convinced coach to switch to adidas.
  
  My scan as I have mentioned before is on my birthday.  So I will be spending my birthday in Chapel Hill most of the day with Carrie and Rene, then off to dinner and then to the RBC for the Katy Perry Concert.
  
  But before I can to do that I will have to dig myself out of 30 adidas boxes..hmmmm....I see an OCD sister coming in to work with me...I do get to add Texas to my list of states visited even though it will be a two layover in Dallas.  Need to plan a trip to visit Angie and Lauren so I can official say I was in state other than the airport.
  
  
  

• Monday, May 30, 2011 10:07 PM, EDT

  Scaneitey in full force, 2 weeks and four days.  Hopefully a long week at work sorting boxes of Adidas gear and some ordering will keep the mind occupied and a game of kick ball.  Yes, I said Kick Ball athletic department style, I hope they are going to have ambulances on stand by and some camera's this may get very interesting. 
  
  Then I get to spend almost a week in Cali at the Athletic Equipment Manager Convention.  Kinda glad my scan is after the trip, last cool place the convention was at that I really wanted to go was Texas, but nooooo, the resident got overruled he was going let me go then his supervisor (now my permanent ONC doctor) said NO.  Yet I got to to Tennessee to of all places Chattanooga, really I would rather have gone to Dollywood.
  
  Hopefully the docs will give me a good present since they are scanning me on my birthday...I don't know maybe I don't know but the words you are still NED...Seriously I am not really in the mood for Chemo.  I have also decided I am not counting upwards at birthdays but down so I will not be 33 on June 14, I will be 31....lol  That's right people we are counting backwards.  It will be the end of the month before I found out if I officially have an Auto Immune Disorder we all suspect I have.
  
  Kinda of worried since I actually feel almost normal that my bubble may be busted and back on chemo I go or that PARP trail thingy the docs where talking about.  Oh well, back to watching TV and trying to keep my mind occupied.
  
  
  

• Sunday, May 29, 2011 11:49 PM, EDT

  Two weeks and 2 days before I think my 33rd birthday and the dreaded Scan.  Chemo or no Chemo and approximately a month before I found out if I have an Auto Immune Disorder that could also affect my treatment.
  
  
  

• Tuesday, May 24, 2011 4:00 PM, EDT

  Should have got these sooner

  Boy, I should have gotten those muscle relaxers sooner.  The PS (plastic surgeon) prescribe them in hopes of getting my left pectoral muscle to relax.  Those who do know due to an infection my treatment was changed so I got radiation before they could fill up my implants.  The result was the tightest implant ever seen according to GYN. I had to deal with for over a year because I was spacing out different surgeries.
  
  I can now enjoy a good night sleep, the body can relax and crazy dreams have ensued.  When I say crazy, I mean the last was very entertaining and it was athletic related with appearances from Tennessee Lady Vols, Wake Forest, and various other athletic teams.  Just plain crazy apparently I was visiting Wake Forest Equipment room, why I don;'t know.
  
  Can't wait to sleep in on Friday and maybe go to a couple of movies and the flea market.  Hopefully I will be able to finish some of my projects on Thursday, since Wednesday is packed full of adventures, see hte track team off as they go to NCAA regional meet meaning I have to be in work by 730am, a mandatory blood pathogen meeting and the awards excellence "luncheon" should be named Desert Party since that is all I saw on the menu, to see if I win another $250 dollars a day off....I am looking forward to the howling cow ice cream...that stuff is gooooood.  and yes Adina I will dress up already have a pink top laid out but I am not wearing to the 10am meeting.
  
  

• Wednesday, May 18, 2011 4:43 PM, EDT

  Season of Symptons

  Apparently winter brings chalky, irritate, red swollen hands/fingers, summer brings a dry mouth, cracking voice and a lot of throat clearing with strange blotching hands after folding clothes...lol...apparently my hands don't want to do work, well they are going to have to re adjust. 
  
  I bought some sugar free candy and have been sipping on water to tame the dry mouth and cotton tongue. I figure the dentist has gotten enough money out of me, so it might be smart to suck on sugar free candy....Funny thing is the water drys the mouth out more than the Mt. Dew and chips due irate the tongue but  the tummy wants them...what is one to do....it would be nice for the mouth, taste bud, tummy and intestines for once agree on some food.,,,but I don't see that happening anytime soon.
  
  My next scan will be on my birthday in the morning before I go to the Katy Perry concert.  The next week I will visit the Plastic Surgeon, followed by the next week with a visit to the Rheumatologist...and two chiropractor appts thrown in there to. More than likely after the Rheumo results i will most likely have to visit the dentist again to get some stuff for the choppers...
  
  I have discovered that sticky notes are my friends way too much information in my head of things I need to do..... and I needed to buy an I-pod when I first got dx....I love the calendar app....because frankly I have CRS-S .....Can't Remember Shit Syndrome...
  
  
  
  

• Saturday, May 14, 2011 1:41 AM, EDT

  Answers with more Questions

  

  Apparently the tests I had has narrowed down the Immune Disorders to Sjogren's Syndrome and Lupus which I apparently have markers for particularly Sjogren’s.  Mind you I was driving on I-40 when everything was being explained to me through my right ear that has a hole it…..for those of you who missed that episode let’s just say a track starting pistol going off in a small room not a smart idea……I finally switched it to the left ear which apparently has better reception to allow me to focus on my bilingual doctor who has a Spanish accent explaining in a nut shell what the report stated.    

   My blood test showed I have the atypical antibodies SS-A and SS-B antibodies, that can be found in most, but not all patients. Having those antibodies means I have the possibility of developing this syndrome.   At first it was we will test you again in three months to see if your proteins are up which is a sign that was before he asked the question of dry mouth.  At the time of my test, I did not have the dry mouth, which I have had on and off since Chemo.   Well I am not taken Chemo any more, needless to say I am being scheduled for the next available appoint which happens to land when I am in California so it will be after I get back, I am suppose to get the appt. in the mail for June.   We will be discussing the next step which will probably be another test specifically for Sjorgen’s.  

   So as everyone knows I am the expert of Google and online research….Well, Well, Well Mr. Google has possibly explained ohhh the $20,000 dental bill I got, guess what Sjogren’s can  Drum roll Please……………………..I will allow you to read…… “Inflammation of the salivary glands can lead to mouth dryness, swallowing difficulties, dental decay, cavities, gum disease, mouth sores and swelling, and stones and/or infection of the parotid gland inside of the cheeks. Dry lips often accompany the mouth dryness. Dry mouth is medically referred to as xerostomia.”

  http://www.medicinenet.com/sjogrens_syndrome/page2.htm.  Needless to say every month or every other month I get dry mouth and lips that isn’t caused by dehydration, trust me I replaced water for my soda’s for two weeks as an experiment to eliminate soda as the culprit, I was correct my mouth was still dry along with the lips.  As suddenly as it appears it disappears.  

   The ENT also mentioned that the Gland on my left side could have been damaged by the Radiation, I am not sure if that is the salvia gland maker.   Thank-you Humphrey Side of the Family Tree for finally giving me something because apparently like the lovely Brac Gene this to runs in families that have Thyroid Diseases (Carrie and I think two other cousins with the blonde hair) like I really needed something else.

  On the bright side according to Social Security’s Disability if I official get diagnosed with Sjogren's Syndrome and/or Lupus I will have two qualifying disabilities, Stage IV Cancer and an Autoimmune Disorder, Sjogren’s is actually listed in the blue book….lol…If  and/or  when I have to apply, more than likely according to CNN by the time I qualify the money will have run out due to all those baby boomers retiring and apparently not reproducing enough to increase the workforce…lol

   For your further reading enjoyment:  “Sjogren's syndrome is an autoimmune disease characterized by dryness of the mouth and eyes. Autoimmune diseases feature the abnormal production of extra antibodies in the blood that are directed against various tissues of the body. This particular autoimmune illness features inflammation in glands of the body that are responsible for producing tears and saliva. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and dry eyes. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and dry lips.”  http://www.medicinenet.com/sjogrens_syndrome/page2.htm

   In conclusion, I still don’t shit….My usually thirst for knowledge and reading random shit like the Encyclopedia Britannica,  I will be doing some more reading/researching before my appointment in June. We will see if any answers will be forthcoming or will we just come up with more questions.    I have concluded that UNC Doctors and Nurses prefer seeing me and my NC State RED attire while rolling through the hallways of the Carolina blue Hospital on the Carolina Blue Stool…Where everything and when I say everything from the trash bags to the popcorn and nachos is blue and band aids an attempt was made but thwarted by a Nurse that was a State fan on putting a tarheel band aid on me.  OFF topic a little bit but damn UNC really do you have to build more buildings??????????? Leave some grass…….People always saying that NC State campus is ugly with all that brick….ummmm yeah you might want to take a look at UNC because the grass is quickly tuning into asphalt, parking decks, and random buildings.  And why I am on it can we get more notice of left lane closed before your right on top of it…THATTTTT…IS ALL FOLKS.

   Stay Tuned for Random Updates from HDN
  
  

• Tuesday, May 10, 2011 9:19 PM, EDT

  What is normal?

  Life is slowly feeling like normal, the combination of medicines seem to be working.  Although I still have phases of sluggishness and the scaniety is slowly creeping in the back of my mind.  On top of that my scan is scheduled on my birthday in June after a business trip to Cali.
  
  I still haven't heard about my blood work, but I am making a trip to the Hill, so I can get Damitz to pull up my encyclopedia Britannica of medical records to see if the results are there, I may also email the ONC.   I also plan on calling  the Rheumatologist who ordered the test, I need him to call in a refill for my Meloxicam as well.
  
  I really need to buckle down, I haven't been using my creams like I am suppose to, I really need to get into a routine.  I rearranged the den, guest room and my bedroom to clear a space for all my meds.  The medicine cabinet is a joke, yeah it can't even fit half my stuff.  My medical bills, receipts, insurance crap are piled on the sofa waiting patiently to be filed away in the 2010-2011 folder.  I dare not open the laundry room door, I am down to my beach shirts, I seriously need to wash tomorrow I am running low on shorts.
  
  Bills, Bills and Bills I need to sit down tomorrow after work to pay my remaining bills.  Love those wonderfull medical bills, the UNC bill is still sitting at 5gs the same amount it was when this all started in 08.  I plan to call CFI since the end of my college loan deferement is coming up, a couple of other girls around my age/same condition have been able to get theirs written off.
  
  So much to do and so little time, I have a list of things I need to get done at work and at home.  I need to sit down and get back to my roots and start making my famous checklist.   I also need to sit down and actually come up with a nutrition plan.  I am increasing my seafood, since I am still having issues with finding the right food combinations and enough calories to make it through the day. 
  
  I also need to figure out some vacation time, I already know I am taken my birthday off for dr. appts and a Katy Perry concert that night, a four to five day holiday for Memorial Day, and about the same amount time for 4th of July.   Need to plan a week or maybe two for vacation...ummm So many decisions.
  
  I guess this is about as normal as my life life will get, medicines, monthly trips to the hill, wondering when chemo will start again...Oh well....back to my tv watching....
  
  
  

• Tuesday, May 3, 2011 7:29 PM, EDT

  Teeth Done!!!!!!!!!!

  Yeah, the teeth are finally finished I just got my temps off and the permanent crowns installed.  Wouldn't you know the temps wouldn't come off easy, they had to break out the dremel to get them off.  The gums are still very pissed off from being poked and scraped for 2.5 hours.   Know I have to finish paying off the dental work, I guess I now well all my overtime will be going.
  
  Still waiting on word about the latest test the Rheumatolgist ran, hopefully I will know something soon.  The elbows are clearing up with the creams I got from the dermatologist, the ezema is almost all gone.  The fingers are doing better a little swollen but nothing like it was during the winter.  I am thinking the weather played a big role in the fingers.
  
  No more appts. are on the books, so hopefully I will be able to have a relaxing month.
  
  

• Wednesday, April 27, 2011 5:25 PM, EDT

  Just got my appt. for my next scan wouldn't you know Sandy scheduled it on my birthday, so lets cross the fingers for a clean scan and some good news.  Doctor appt. first then concert with Rene and Carrie.
  
  My appt with the plastic surgeon got changed to Friday morning, so I should be able to leave from UNC to go to the coast, since the boss approved me taking the whole day off.  Just got to make sure I got all the kids set for the weekend, I have one more uniform to was men's #14 decided to turn it in today and he is traveling to Standford over the weekend.
  
  Hoping I will be able to sleep better tonight, had planed to sleep in this morning.  But as usually I couldn't fall asleep then I woke up at 5am and finally went back to sleep at 6am.  One problem the tummy was growling, looks like its time to put tuna packs next to the bed for a midnight snack.
  
  Tina I looked in that link you gave me, there is a kayaking week in Bryson City, NC for young cancer patients in May, already started the application process, it just so happens that I have 3 different weeks to choose from and one is a week with no track meets so that is the perfect week.  Plus its long enough for my body to recover before heading to California for work.
  
  Still trying to fight off something, may have to make an appt. with the gi doctor to get some antibiotics, if Dr. Damitz doesn't give me any on Friday.  Hopefully rest, beach, water and family will knock the sickness out of the park.
  
  
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• Tuesday, April 26, 2011 7:29 PM, EDT

  Body Fighting Somethng

  My body is definately trying to fight off something, my pain in the rear is back, the knee is aching, the hands, arms, and legs are aching.  Bascially the entire body is aching, I see how it is I increase my food intake acutally start getting sleep and this is what happens.   Plan on sleep in tomorrow and pace my self during the day, I see sitting on a stool and checking in cheer uniforms in my future and a long weekend.
  
  I should be hearing back from the doctors either the end of this week or next week about my immune system. Until then my plan is to make it to the coast this weekend if the body will allow it, hoping a trip to the beach is what the doctor ordered. Hopefully a few days of sleeping in some more calories, an attempt to increase water intake (hopefully I can keep it down), and lounging in the lazy boy will help.  Work should hopefully slow down some with the part of the team traveling this weekend to the Penn Relays and I believe Stanford.
  
  Rene I hear you might have the weekend off, we need to get together and see who else wants to go the beach, Rose may be available if she hasn't got a job yet, Elizabeth, etc.  Well about to slowly climb up stairs for some popcorn and put away the one chicken leg with broth I will use tomorrow to make chicken and rice.
  
  Nice to know I have a low grade fever 99.1 just emailed the doc, hopefully a restful night and taking it easy at work will get rid of whatever i am fighting.
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• Sunday, April 24, 2011 7:47 PM, EDT

  Stupid Questions, Lifes a blur, Escape

  One of the stupidest questions I hear when someone finds out I have Stage IV breast cancer is How did you feel or what were you thinking when the Doctor's told you?  Seriously what the Hell. or you don't look sick, you have hair, Really, so what is a cancer patient suppose to look like? Hello, looks can be deceiving, like the old proverb "Don't Judge a Book by its cover."
  
  Life is really just becoming a blur, I think I need to take a recorder or have a personnel assistant take notes.  To be honestly sometimes its like I am not really there, its information overload for the brain.  Really I think my brain is in I really don't give a Shit Mode.  and lets not forget the CRS...Can't Remember Shit Syndrome.
  
  I was just looking in my bathroom at the medicines and cream laid out across the counter.  I seriously need to find something to keep all my medicines in, plus a chart to figure out all this crap. I will seriously have to carry a bag specifically for my medicines when I travel.
  
  I really do need to escape or be kidnapped (Candy) and taken to the beach, river, somewhere with no Internet access, seafood, water, perhaps a boat, some beer and crazy cousins for entertainment purposes.  Somewhere to get lost with no care in the world and have some fun.  I really can't wait for summer I see 4 day weekends in my very near future.
  
  This work week I should be able to finish W Soccer order, once the fashion committee, yes I said fashion committee makes there selections for the Fall.  Track should be easy since everything for the most part is fill-ins.
  
  This weekend was OK, I got to relax in my lazy boy doing nothing but watching NCIS, Mars Attacks, Whip It for the 100th time.  I was going to go down to the coast for Easter today but my body said nope it preferred the lazy boy and thinking/doing nothing for the day.  Hope everyone had fun at Easter.  I had to go to Harris Teeter to get my deviled eggs, had wontons, fish, clams (from a can) and mac n cheese. 
  
  I have decided its about time I actually use my cooking skills, need to perfect my wontons I will attempt them again later in the week.  I need to go shopping to get some more seafood, the frozen stuff, and yes the stuff n can.  Actually the clams aren't bad, oysters n a can not so but should be fine used in patties or something.
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• Friday, April 22, 2011 8:44 PM, EDT

  More Questions then Answers

  Sometimes I wish I was still on Chemo because I had relatively no symptoms, now we are trying to figure what is going on with with the hands and swelling.
  
  Apparently I am special I have two different things going on dermatitis on the hands which is job related dealing with laundry and washing hands all the time. Plus I have eczema on me elbows, and the Doctor was like "We normally don't see both in the same patient"  Funny thing is when I was on chemo all of it went away off Chemo all of it comes back....worse then before at least it didn't come back to my head like pre chemo.
  
  The thing is when I am on the coast for an extended time like at the beach or river it goes away, I worked at summer camp on the Pamilco Sound everything went away...I think I may need to retire or go back and work at summer camp.
  
  The Rheumatologist ran a ANA test that came back high, it could be a false positive or it could mean some immunology problem, Wednesday that ran another test to see if they find in one of many immunology markers and a urinalysis.   The dermatologist mentioned Lupus as she was prescribing $100 dollars worth of medicines, a while ago my GYN asked if I had Cronins due to fissure I keep getting or is it something else, seven more days until the results. 
  
  I have come to a conclusion my parents should have never procreated with one another...because every damn bad gene that runs on both sides of the family seem to be flaring up all at once.  My ONC appt is suppose to be pushed back as the Rheumotalogist tries to figure out whats going on.  Since I have been have various scans left and right, the ONC wants to hold off on a CT Scan to limit the amount of Radiation I have been getting. I haven't heard from Sandy yet so I may end up just going to my original appt, doc wants to see me in June.
  
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• Monday, April 18, 2011 10:33 PM, EDT

  Another trip to the Hill is on the agenda tomorrow, this time the dermatologist.  Five to one all this crap is related to the fissure and I will end up back at the GI doctors. I am sick of doctor appointments, locking at my calendar trying to figure out when to take squeeze in a mini vacation.   Finally down to just one pill a day, and pain meds when needed, my mind has cleared a little, still have another week of no lifting over 5 pounds.  During this time I have learned that a of 10 soccer balls weighs a 11 pounds.
  
  Need to clear the mind and spend a weekend with Tonya doing nothing except watching DVD's, its looking like the weekend after Easter, I will just need to attend a wedding on that Saturday.  So Tonya start making a movie list of what we need to watch.   Hopefully I will be able to squeeze a relaxing trip to the River to hang out with some of my cool n crazy cousins Christy, Dawnree, Candy, Kim and the rest of the river rat crews, looks like it could be Memorial Day Weekend.  Still need to squeeze in a weekend with Rene and Tina I am sensing a beach weekend when it gets warmer.
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• Wednesday, April 13, 2011 11:53 PM, EDT

  Still waiting to hear back about the test the Rheumatlogist, apparently according to my ONC she read his notes something was high in the blood test, hopefully its noting he said if something was wrong he would call.  I see the Dermatoligist on the 19th so hopefully she will have some answers about the hands.
  
  Since everyone has been taken various x-rays and scans of me it seems like every appt. she has pushed back my CT Scan until June until the Rheum & Derm can figure out what is going on with my hands.
  
  I stay inside my apartment and my hands don't act up, walk out my door and BAM red, itch and scaley.  I think its a sign that my lazy boy and PS3 are lonely and need more attention...lol...I told that to my PS Damitz she busted out laughing....then had to change part of her plan since apparently I have sensitive skin....or it could mean the Riverhouse is calling beckoning me to spend more time on the water hanging with the Riverrats, Christy, Dawnree, Kim and Candy and the rest of the crew...
  
  On top of everything else I manage to bust my right eardrum which has thrown off my hearing, just another of many obstacles that seem to jump out from every direction.  Just when I think I have one problem handled three more pop up....OH well shit happens.....
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• Tuesday, April 12, 2011 12:41 PM, EDT

  As usual the clinic was backed up but I still got out in a hour from my scheduled appointment time, wisely I showed up 45 minutes early to get checked in.  They ran out of rooms so I got to have a room on the opposite side of the hall right across from the door where all the doctors and nurses hide before visiting the patients.
  
  I had to pick on the Doc about her trying to give me hives, she took the blame even though her resident was the culprit who wrote the prescription.   Luckily Target pharmacy caught it and called Damitz to get her to change the antibiotics.  Her excuse it had momentarily slipped her mind that cephalxin which she gave me in 09 gave me hives for a month.
  
  The stiches like the first time are healing well, the left side the radiated is not as soft as the right but not hard like it was before with all the scar tissue.   I am also getting some sensation that I did not have before with the last implants.  Some of the nerve endings are finally coming back to life.
  
  Five weeks until my next appt. with the ONC I just realized I need to email the doc to see what scan she needs to schedule. Really another week wearing this crappy velcro sports bra....lol
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• Saturday, April 9, 2011 10:45 AM, EDT

  Taking it easy still sore will be going for a check up with the Doc on Tuesday.  It has been really hard to basically sit on my hands at work, thank-full I have great co workers and student-athletes.  Because I can't reach over my head the kids had to get what the needed off the shelf.  It was quite funny I had three women's soccer players needing various items to pack for there away game and a bunch of cross athletes that need shoes I had ordered once I got back from surgery. 
  
  The girls where great one needed a pair of shoes, I had to point them out and she took them down to try them on and put the ones that didn't fit back on the shelf and yes compliance she signed for them.  Then I had a track athlete one of my throwers who gladly helped to restock the Gatorade bars since there was only one flavor down.
  
  My sister is also in town so she will be able to help me this morning and Sunday when I go in to do all the game laundry.  Uniforms and a box of shoes is basically the only thing I can lift.  This 5 pound no lift rule is a pain but after seeing where the stitches are...yeah so not lifting or stretching...not that I haven't been tempted every like 5 minutes.
  
  I still got to wear this sports bra for another 3 weeks which is a pain, especially when you haven't worn anything for like two years.  The swelling has gone down and the stitches are starting to dissappear. It will be a few weeks before I really see what it looks like, the surgery did solve the problem of the stiff neck.
  
  Now I have got to figure out what is going on with the hands.  I am wearing the arm/wrist thing at night as instructed.  I have discovered that my hands SWELL UP BIG TIME at night.  I don't put them on tight, I have it a little loose to give some breathing room.  Well needless to say I wake up with bruises where my arm and hand of swelled to the point that a have marks in shape of the wrist/hand guard I am wearing.  That and two of the fingers on the left sde have felt the need to go numb.
  
  On top of all the crap I also have a ruptured ear drum, struggling to stay awake this week.  All the drugs I am taking say casue drowsiness, and this time its not a lie.
  
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• Tuesday, April 5, 2011 1:58 PM, EDT

  A big thank-you to Rene for coming up Sunday night to take me to my surgery on Monday morning.  She just left earlier today after taking me to the bank, the pharmacy and food lion for a few last items.
  
  I have had a lot of appointments this month, many of you especially Michelle have been asking about particularly ones so I will break down all my appointments leading up to my surgery.
  
  Rheumatoligit:  He doesn't think it is arthritis, but he took a blood to run a few tests.  I was instructed to purchase wrist guards for both hands to wear at nights, to hopefully get the swelling/tingling/numbness under control.  I was also given a new drug to try this month Meloxicam.  He also took x-rays of my hands, lower back and hip joints, I will get those results in two-weeks.  He refereed me to the dermatologist to have them see what is causing the contact dermatitis and the spots on my elbow.
  
  Dentist: Apparently my gums are the culprit of my pain, I was given instructions on a new floss to use to get the inf lammed gums under control.  I am just waiting on my permanent caps to come in for my front bottom teeth.  Still have a few more thousand worth of work to be done.
  
  ENT: My sinuses are all clear.  I will be going back to get my hearing checked, I did something stupid starter pistol going off in a small room, on the safe side getting the doc to look at them on Friday.
  
  Surgery:  Rene will have more of the details then me.  The scar tissue was removed, I believe Rene told me that she couldn't take all of something about thinning or something like that, Rene can give u the details on that.  I had her take some extra skin of both sides, and she cut one of my freckles (brown spot) that she had concerns about the last two years, I have a stitch where it once resided. 
  
  I have to wear the sports bra and gauges until tomorrow, I think I will need Carrie to call Rene to get all the details of the do's and don'ts.  I believe I have to wear the sports bra for 2 weeks, I plan on wearing it longer.  It is a little bit irritating it feels like the bottom of the bra is digging into my skin, granted I haven't worn a sport bra or bra of any kind since my last surgery.  Once the Doctor said I didn't need one becasue it was behind a muscle, I figured I would save myself some money. 
  
  I beleive Rene said Dr. Damitz put smaller ta ta's in, this means my port is no longer sticking out, it has droped back down.  The strain on my neck is no more, what a relief for both the left shuolder and neck.  It is unbelievalble the difference since waking up after the surgery it is no longer tense.
  
  Medicines:  I am going to have to be on top of all these medicines I am taking.  I have to take the Meloxicam at the same time everyday for a month, that will be a challenge.  I have been utilizing my wipe board today to mark down my schedule.  I will need to find a small blank notebook to keep up with the meds or find a Ipod app...lol.  I have to take that one with food or it will upset the stomach.
  
  Upcoming Appts:  I will be going to the ENT this Friday, follow-up with damitz on tuesday the 12th, and dermatologist on the 19th.
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• Sunday, April 3, 2011 10:26 PM, EDT

  The last ENT appt came back as my sinus are clear, but I am having some fullness and ringing in my ears so back to the ENT on April 8th.  The Rheumatoligist took x-rays of my hands, lower back and hip joints have to wait two weeks for result.  He also took a blood sample to rule out early onset of something arthritis.  I got a prescription for some kind of glove thing to wear to bed to help with the swelling of hands, and some higher dose anti-inflammatory medicine to take for a month.  We will see about that because my tummy doesn't like them.
  
  I was referred back to the dermatologist to figure out what is making my hands break out.  Apparently I am allergic to something, apparently everywhere except my lazy boy in my apartment. hmmmmm.....I think my body is saying stay at home and play playstation 3 all day, then Sims on the computer, followed by a book or two...lol...but then who would pay the bills.
  
  Tomorrow morning I go under the knife to have my exchange surgery at 945am.  New Ta Ta's in the morning....and one month and counting until my next scan in May and my port flush.  Plus my usual appointments to the chiropractor.  My designated driver is upstairs reading a book preparing for a boring day in the waiting room.  We made a trip to the bookstore for reading material, ate at the new sushi restaurant sorry Carrie, next time we go it will be at lunch time, its cheaper.  I got two more books though Rene thinks I will be too doped up to read them...lol....it will be fun playing Bioshock when loopie. We watched Sabrina the Teenage Witch the Movie, Yogi Bear and almost finished Karate Kid (the new one).
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• Sunday, March 20, 2011 1:53 PM, EDT

  I wish I lived in Harry Potter World how cool would it be to go to Hogwarts and play Qudditch, go shopping on Dagon Alley.  Makes u wonder that maybe in the next life that be a possibility to be reborn in your favorite movie or book.  My top choice would be Harry Potter, Percy Jackson, X-Men, Wicked: Witch & Curse, Kathy Reichs Virals or James Patterson Witch & Wizard.  You can see a theme, a world of Magic and/or superhuman powers.   You have to love those Harry Potter marathons, it never fails I see scenes I don’t remember, going to have to reread the series.  I also need to finish a couple of books, still reading Beautiful Creatures, the last two books of the Tunnel Series Free Fall and Closer, Wicked Series: Witch & Curse, Legacy & Spellbound, Resurrection, James Patterson Witch & Wizard and his new book in the series Gifted.   I also have a few other archeological adventure books like Atlantis, the Codex, and Map of Bones that I also need to read.
  
  Well I actually ate some food today, and I think I know why I haven't really ate anything not sure if it was the food or the three sips of water I just had my tummy isn't happy.  The antibotics calls for water but as usually my body is having a bas reaction.  I think popcorn and Mt. Dew are in under to settle tummy cause I really don't feel like upchucking again warning TMI becasue food pieces gets stuck in my throat coming back up.  I NEED to get my sleep pattern under control, sleeping late yesterday meant I went to bed at 5pm this morning and got up a 10am.  Tommorrow I will need to get up a 5am so I can get to work and put out M Soccer laundry before there 8am practice and start checing off items from my very long list of items that has to be done by Thursday.
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• Saturday, March 19, 2011 10:57 PM, EDT

  Last night I got in from work only sit in my lazy boy and fight my heavy eye lids.  The eye lids won by 830pm I was in bed, at midnight I awoke to a body that felt like I had been hit by a freight train, damn that dream was vivid, I have to remember to tell Chad about since he had a few camo's.  I slept more than I have slept in a long time, I so didn't want to get out of bed but had to a 11am so I could get ready for work.  My appetite is ZERO, I think the only thing I had today was a hamburger from McDonald's, a couple bites of beans, and some popcorn. 
  
  I need to make my way up to the kitchen to put some fish sticks in the toaster oven, but I am not hungry. Yeah, Yeah I know I need to eat but my teeth and tummy have different plans.  Tomorrow I hopefully will sleep in late again and the roll in to work to get the uniforms and towels out of the men's locker room.  Something like five days until Raleigh Relays.
  
  The antibotics seem to be helping the teeth pain, I have been able to decrease the amount of pain meds.  But as that pain passes on others crop up the liver, lower back, knee and various other areas have decided to act up.  Will have to keep an eye on all the aches and pains, may have to email the doc and get my scans moved up from May.  
  
  You will notice from my picture that I found miniature stuff animals from the new Easter Bunny movie coming out.  I still need to get my hands on the big one from Build a Bear.
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• Thursday, March 17, 2011 8:36 PM, EDT

  It feels like the antibotics may be starting to have a slow postive effect on my teeth.  My tongue is burning a little right now from the mild salsa and chips I am eating, but I can't help that I am addicted to the salsa, have to eat one chip at a time and let the mouth cool off.
  
  Hoping tomorrow will bring a day that will require limited use of my pain meds, I have a busy weekend planned getting ready for the big track meet and cover a soccer game.  I hate leaving a mess at work, but I got behind finally got the kids uniforms out at 545pm.   I must say the amplifying of the caffeine from my antiboitics just might come in handy over the next 10 days.  That and the cotton candy I can't resist from Food Lion, yeah yeah I hear you "Dental issues and ur eating sugar"....ummm yes I can't not deny what my tummy requests or is it my brain, who knows.  I just keep the pearly whites brudshed and rinsed with salt water.
  
  Movies, Movies, Movies, i see that I will be watching the Easter bunny movie....uhhhh depending on when Rene gets up here maybe we can see the bunny moive before my April 4th surgery.   Damn Warner Brothers making me have to wait to July 15th to see Harry Potter, u suck.  Still waiting to see when some of the other books I have been reading gets released to the big screen.  Tonya I know what u are thinking what about that alien comedy movie, that will have to wait to the $1.50 theatre or the beer theatre.  I see that Yogi Bear is now on DVD...must add to my collection.
  
  Well being the bunny is so cute, I had to go to build a bear and yes they have the BUNNY (Rocking EB)....So who ever is filling up my Easter Basket, I WANT.....I NEED that easter bunny, he will be my new Chemo buddy when the time comes...YES I know Carrie I have a Possy in the Spare Room, but in my defense there is only one bunny, a tiger, a monkey and a couple of bears last time I checked. and somebody find me a DUCK damit....still can't find that elusive duck the one I saw when I was eight and asked for it for easter...did I get it NOOOO, I got a damn lamb...What the Hell granted it was next to the duck but I said and held up the DUCK...
  
  Damn the tv is just evil tonight, Carrie SIMS is now coming out in MEDIEVAL, the dude from Scrubs is really selling it....I will have to check with Jeremy cause I know he will be first in line for that game....does this mean a star trek like version is coming out...hmmmmmmm. 
  
  Good night all back to watching Harry Potter Movie 1.
  
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• Wednesday, March 16, 2011 8:14 PM, EDT

  Good news in my world usually doesn't last long.  The results of my CT Scan on my sinus came back clean, meaning all the problems with my jaw/face/ear are due to the over $20,000 worth of damage caused by Chemo to my teeth.  My upper teeth where fixed in the fall ( had to take a loan out on my car) I had a little pain but nothing my pain med couldn't handle but my lower teeth...oh shit.  I am very lucky that my dentist has decided to work out a payment plan for my lower teeth like $7000 worth of repairs, have to pay $500 bucks this week hello master card.
  
  I am popping pain meds like its candy....This shit hurts more than my ACL, hell even my ASS and Double Mastectomy didn't hurt this bad.  I think the cold air is  even making it hurt that is why I am sitting in my living room wearing a ski mask...lol.  I emailed the dentist last night and they called me this morning she knew exactly which tooth was hurting.  Apparently that tooth had more damage further down the root than any of my other teeth.  The pain med has just kicked in and the antibiotics I just got apparently amplifies caffeine....ummm I guess this means this could be an interesting two weeks. 
  
  Watch out people it will be just me for two weeks running on caffeine, antibiotics and pain meds...lol...and my favorite answer will be NO to basically everything...don't be shocked if u see me playing Crokay thru the equipment room...
  
  I must say the more pain meds I take the better sleep I get and the more vivid my dreams are, quick someone needs to get a hold of Steven Spielberg, I can be billionaire, there are blockbuster movies in my head just waiting to bust out.
  
  My bed is calling but if I go to sleep now, I will be wide awake at 3, so I will drink another Dew. 
  
  

• Friday, March 11, 2011 4:30 PM, EST

  This will just be a mini update, I finished with my dental appt around 2pm today and like a dummy left my pain med at the house and made a quick exit from Tripps with a to go box.  My dad and uncle drove up from the coast to take me to my dental appt.
  
  While I was under the drill they returned to my apartment and started cleaning. So I sould like to send a big shout out and thanks to the two old retirees who have cleaned my apartment. They have went out to the store to get a few repair itrems, you now dads they find something that needs fixing and teaking they are all over.
  
  The pain meds have kicked in so the teeth aren't hurting, now I am mentally preparing myself for my ENT appt. on Monday.  Today and Tomorrow I will spend the day with my Dad and Uncle, we plan on hitting the Fle Market tomorrow.
  
  I am still seeking applications for April 4 Day Surgery, so let me know if you will be able to assist.   Make sure to have a bag in case I have tp upchuck which has be now to happen after surgeries and no heat needs to be on in the vehicle or I will really get sick.
  
  I would also like to thank my wonderful dentist who is allowing me to set up a payment plan so I can get the dental work I desperately need, Thanks so much....
  
  

• Wednesday, March 9, 2011 6:20 PM, EST

  Beyond busy week and they claim it is Spring Break....which is Heidi speak for a week to schedule dr. appts and try to catch up on work...yeah right...So adidas finally sent my missing uniforms which deductive reasoning showed that they had been sitting in Portland this entire time, everything was good until I opened the women's warm-ups and was greeted with 3-stripes..damit luckly everything else was NCAA legal....At least I have enough uniforms in case Chad has to help me pack uniforms the week of April 4th.
  
  On to my various Medical adventures, had an CT Scan of my sinus to see what damage has been done to that area, since I had over three years of continus sinus infections.  I am not an expert but I think I know why I can't hear worth shit on a phone. or really in general ...You see the radiologist tech gave me a copy of the scan to take back with me to the ENT on the 14th of March.   Well the inside cover says stick in computer and viewer will automatically open, and you know I couldn't resist...lol
  
  I even made a copy to my lap top and figure out how to capture the images and put them on facebook.   With the help of google I am learning how to read a CT Scan o the sinus.   I am not an expert but I think both mastoid (ear) on each side are suppose to be the same size..yeah mine aren't in one image..That could explain those hearing test results...Well official word will not come until Monday but my guess is another optional surgery in my future..
  
  On to upcoming dental appt.  my Dad and Uncle are coming up here tommorrow to spend the night and take me to the dentist on Friday morning for another marathon appt.  I will be very doped up as temporary caps are but on I think 5 or 6 of my bottom teeth.  Expect pics since the last time I was doped up but still managed to snap a few photos.
  
  Then on Monday I will find out what prize I win from the ENT lottery, will it be more scans, surgery, or more medicines or another crazy scope, oh the possibilities.  Then Wednesday back to the Chiropractor to look out how that treatment is going.  
  
  In between all these appts. and some serious overtime perparing for our one and only home Track meet which happens to be a HUGE track meet.  I was able to check the event boxes to see what I was missing, not much but it never fails I always have to buy something.  At least this year its not the most expensive thing..the blocks I gots 14 of those bad boys this time a around.  And seriously how Lets not even get started on the fact it looks like someone droped the messy bomb on the er...clean up will have to wait to sunday when I am pain meds and have slept the entire Saturday away.   I will also have to test the steeple barriors and the water pit to make sure they actually work...if not W-40 to the rescue...I wonder if duck tape will work....lol  And once again call UCS to find out where my door pins on for the throwing cage, that bad boy is about to a lock on it so the wind will stop damaging the pins.
  
  Ater the lovely track meet that will conculde the month of March, I get to see the Rheumatolgist and find out what is going on with my hands, that are a royal pain in the ass.   That appt is on April Fools day and will be followed by a Monday morning day surgery for the ta ta exchage.  Out with saline in with the silcone and some removal of scar tissue on the left side.  I am still taking applications of a responsible adult to drive me to and from UNC, the surgery is on the 4th, the time will be determined on April 1st.   Then I will have to get aerola and nipple tatooed on, I see a future road trip with girls down to Orlando for that procedure we will have to coordinate that trip those with kids u know ur mothers love to babysit...Ummm fyi we will also be attending Harry Potter World just to let u know.   Trip will more than likely be after June 14th and Mid July, I have a business trip to Cali the first of June then I have a Katy Perry concert to attend on my birthday.  Another state I can mark off on my map, need to get some international places marked off as well I see a trip to Costa Rico, England, or some other place Hell even Canada. Quick someone needs to win the lotto asap or marry a sugar daddy.  
  
  I am beginning to believe all the Chemo symptons decided to wait about 18 months before they started to show their ugly head..I definetly now I need to get my sleep scheudle back on track and get back in the weight room.
  
  

• Thursday, March 3, 2011 5:12 PM, EST

  Just as I figured went to the ENT this past Monday to get my sinus checked out since I had sinus infections my entire time on chemo, and spent the last 2 yrs on antibotics, I get to have a cat scan on my sinus, yipe....I forgot about my chriopractor appt. so I will have to call and move that to Monday afternoon since I will be getting my head scanned on the 7th and will get the results on the 14th.
  
  Next week I will also be scheudling my exchange surgery, the time of the surgery depends on when adidas sends me the rest of my uniforms and how long I will need to take off.  Somewhere in between all my appts. I will need to get all the hurdles out of storage and on to the track, repair them and get ready for the Raleigh Relays at the end of the month.  Also got to make sure all the steeple barriers are in working order since they did not make it back in the pod over the summer.  
  
  I will be making another trip to the dentist on the 11th of this month to get a bunch of caps putting on my teeth.  Yipee what fun, I will be high on what ever that crap the dentist gives me, I still don't remember the last dentist appt. but I did manage to take cell phone pictures through out the procedure.  My dad will be my chauffer to the dentist, basicially he has to drop me off and go shopping until the dentist calls to come him to come and get me.   I will need to draw him directions to Cameron Village from the dentist office and how to get back since he is not from Raleigh.
  
  I will still have at least 3 more dentist appts. after this one to get everything fixed from the Chemo, hopefully I can get all of it done before cancer rears its ugly head again.  Well back to work track kids should be finishing up in the showers so I can start the laundry and get out of dodge.
  
  

• Sunday, February 27, 2011 7:55 PM, EST

  Well I spent Saturday morning working, and the afternoon scaning old family photos and putting them on facebook.  I see from the chat window everyone has been having fun taking a stroll down memory lane.
  
  Sunday I actually slept until 1230pm, hopefully I will be able to get back onto a normal sleeping schedule.  This week begins the 1st of many dr. appointments for the month of March leading up to my breast exchange surgery in April.
  
  I will be having my standard Monday morning Chriopractor appt. and then the afternoon I get to see the ENT to have the sinus checked out.  Why is day before your dr. appts other areas start to hurt as well?  Oh well the Doc can check that out too since it involves the jaw and neck.
  
  Looking at all these old pics makes one yearn to go back to when you had no care in the world.  Spending your time at the beach, or piling into the station wagon for fun activies in Gayle's Day Care Service a trip to the Cardinal Movie Theatre.  Going to beach where you had to all wear color hair sponges so our mother's could spot in the water.
  
  

• Thursday, February 24, 2011 8:09 PM, EST

  Lesson learned wear the damn gloves...lol....yeah needless to say my hands are fucked up and I really didn't do anything since Chad was nice enough to have all the laundry done when I got in this morning at 9am, he must have been the damn energizer bunny this morning.  I did put some women's soccer loops away, took soccer equipment to and from the field, exchanged some track uniform pieces, set-up an account with Adidas Agron, talked to a recruit, shipped a package to the ACC and a little more paper work....
  
  I am now sitting at my laptop with Aquaphor lathered on my hands that are severely dried out...and it wasn't even cold today...my hands are beyond rough and have weired scratches on them like a I got attacked from a kitty cat....Oh well tomorrow I will need to wear the gloves...the hands have become super sensitive, finger nails hurting...tendons and fingers still hurting...just took an Oxy..it has helped some..swelling isn't too bad, its between a s/m and a l/xl adidas running glove...
  
  With track out of town at the Indoor ACC, I can get a little more work done on Friday like those three boxes that need to got to the screener, take the shoes out of inventory and put shoes back into inventory, email incoming women soccer players, add some pictures of shoes on the WB Facebook account for the freshman to choose from for the Fall, I should be able to leave early, since women's soccer only has individual workouts, and I really going to have to wash that Mr. Wuff suit that is sitting in my office....it might have been smart to move that into the laundry room before I left...ummm doing to have to spary some febreeze in my office......Saturday will be a bright an early morning for Women's Soccer alumni game at 10am.....
  
  This weekend will be busy I need to design soccer uniforms (3 sets including goal keepers), warm-ups, cleats, gk gloves, etc...Got love this new mi team site...and the new coding system in Adidas catalog to show which of the 4 internal adidas departments one must order from.....I still can't believe we actually can design goal keeping gloves of all things..but after seeing the standard stock you damn straight I am designing some...no way in hell I am ordering purple/green cleats and gloves..seriously really did we have to bring 80's and early 90's back I just surplused some of those colorfully shoes last month.
  
  Hopefully Sunday I will catch up on my sleep...for some reason my mind will not shut down and races like a freight train as soon I lay down even though my eyes are heavy as I sit in the lazy boy watching tv.
  
  I have two appts. on monday Chriopractor in the morning and ENT doctor in the afternoon...I see an antiboitic in my future and 5 to 1 odds some kind of x-ray or is done on the head....Oh well...Well time to get back to organizing all my paperwork, will, book of passwords, etc...
  
  

• Saturday, February 19, 2011 6:21 PM, EST

  I think my hands are allergic to everything at work...lol...My experiment of wearing Adidas running gloves has proven that fact.  The gloves have kept the swelling under control, the fingers and joints are still hurting.  Its strange both hands hurt in the same places, it feels like the tendons are inflamed/pinched or tangled in something kind of like carpal tunnel which I did have about a decade a go when I still worked at Wally World.
  
  Apparently towels, paper, and just taking off the gloves causes the fingers to dry out and turn white. The palm side of my fingers are so rough you would think I was a construction worker.......
  
  Gloves on good...Gloves off bad.  I was thinking it may be lymphdema, but that would only explain the left side, but the fact the right hand is having the same issue, I am not sure its a major factor.  But since the gloves are working I plan on getting a compression garment for the left arm and compression gloves for both hands. Cold definetly makes the finger ache, but I don't think it has anything to do with why the fingers have a pain of 8 on the scale of 10.
  
  I have also learned not to order the S/M adidas gloves because in reality they are like a 3XS-2XS, Adidas this is America not China, it may be perfect for small petite hands, but seriously have you looked at America?  And if your wondering where they where made?  I just checked the tag.....Made in China...
  
  No wonder all the girls started asking for M/L, on the other hand perfect for stoping swelling in the hands.  Relaxing for the rest of the evening after putting in 8 hours today working 3 Spring Soccer Games.   I plan on sleeping on Sunday and then spending the afternoon designing soccer gear for the fall.  I have lots to do before my dental procedure and my exchange surgery.  Too much to do and not enough time.
  
  

• Wednesday, February 16, 2011 6:47 PM, EST

  Relaxing in my lazy boy that desperately needs retiring, thankfully I got an email saying the IRS is paying me on the 25th.  Hopefully I will be able to find the elusive lazy boy equipped with a cooler, drink holders, and remote storage.   Yes, you heard me a cooler/fridge in a lazy boy.  
  
  I just caught up on my NCIS, chugging a dew and eating some popcorn, while trying to keep my hands room from the heat coming from the laptop.  My hands are still a pain in my ass, task for tomorrow, get an appt. with a rumotalogist, ENT and a skin doctor for the end of the month.  The cold, the laundry and the latex gloves are part of the problem. 
  
  I actually wore a pair of track running gloves, all day today, put some lotion on then slipped the gloves on.  It helped with the dryness but not the pain.   It's not only the fingers it everything the forearm, an ache that goes to the bones, if feels like the muscles are in a knot and the nerves are all tangled up or something.   The lap top is actually keeping the digits warm at the moment will need to put the gloves back on shortly.  Had to give in and took the Oxy when I got home hands hurt no more.
  
  Meet with University Benefit Peps to see what my Short Term and Long Disability was, and got paperwork that I can fill out and get on file that will help speed up the process when I need to impliment it.   Good thing I love my job becasue damn I have like 3 months of sick leave built up, almost 3 months of vacation and still have that 1 week we got instead of damn pay raise.
  
  Have to wait till the 25th to get the refill for my nose spray that is going to cost like 50 bucks.  Need to sit down and make me a shopping list for pay day.  And why in the hell am I suddenly itching all over...damn it Carrie did you make me allergic to water or something?   I wonder if I used that softener on my clothes instead of just the towels. 
  
  My trigger finger is starting to really get tight, tingle and itching so I will end my rant for today....Stay tuned for the further adventures of Heidi vs. Cancer a real Pain in my Ass.
  
  Oh and if you happen to see a lazy boy equipped with cooler, text, call, email, immediately.....thankyou

• Monday, February 14, 2011 8:54 PM, EST

  Sad news.....Steaks are no more...sigh....Mt. Dew is on the way out....hello apple juice since really your the only drink in my frigge besides the V8 and corona.....
  
  Smoked Salmon, sushi (yes Carrie/Rene I said sushi), I guess I will allow Carrie to expand the taste pallet.  Plan on adding more seafood like my favorite boiled shrimp.  I have added blackberries, still eat some beer sausage with bread. 
  
  The warm weather has helped the dryness of the hands and a little bit of the swelling.  I am thinking the change in diet and the increase in calories has helped a little as well, it has also done wonders with my energy level.  I need to hurry up and make an appointment with the nutritionist.
  
  I am slowly but surely getting the apartment in order, as well as the equipment room at work, still have to organize all my paperwork in both locals.   It is still hard trying to stay at work as long as I need, funny before cancer I would never leave now I find my self watching the clock.  
  
  Trying to keep focus was a challenge before, cancer even more of a challenge now.....lord if I was in school I would have been the poster child for Riddlin.
  
  

• Sunday, February 13, 2011 7:50 PM, EST

  In case you don’t know….because apparent some people at work had no clue I have… Stage IV Metastatic Breast Cancer…in the past 10 years doctors have discovered there are many types of breast cancer such as: ++-, +++, +--, and ---…..I have a rare one that normal attacks Hispanics, Blacks and those who carry the BRAC1/2 gene the --- know as Triple Negative Breast Cancer.  What is TNBC, it means hormones don’t have a damn thing to do with my cancer, mine is due to a jacked up gene…so I can’t take any pills like most patients.

  Pink…Pink everywhere there is damn Pink. I get the need to spread awareness about Breast Cancer and raising funds but what about us Stage IV Girls.  According to some statistics floating in cyberspace something like less than 5% of money raised for breast cancer goes into the research for Stage IV.  No one really wants to talk about us, at our Pink basketball games survivors are recognized by the years they have been clean since there originally diagnose, but what about those of us who live with cancer on a daily basis, where not survivors we are surviving,  warriors in a daily fight for our lives. 

  We deal with aches and pain on a daily basis many due from the poison being pumped into our system to beat back the cancer, radiation treatments that can leave us fatigued.  Our medicine cabinets are full of all types of Pain Medicines, Nausea, Stool Softeners, and Vitamins, basically you name it resides in the medicine cabinet.  We worry when new pains rise, our minds race has the cancer spread to other organs, or is it multiplying in the organs/bones that have already been affected.  We subject our bodies to radiation either with scans every three months or from treatments to beat back METS.  Scanxiety overwhelms us as our doctor’s appointment approaches; I have literally get sick to my stomach before an appointment, granted the Hardees grease biscuit didn’t help the situation.

  I am a part of a scary trend a breast cancer patient under 35, dx. in my twenties, with triple negative, and Stage IV right out of the gate.  When most people my age are just thinking about buying a home, planning vacations, marriage, kids, etc, I have much more on my plate, like meeting with University Benefits Officer trying to figure out my life insurance and short term/long term disabilities to get my options planed out for whenever this cancer decides to rear its ugly head.  Looking at SS disability, I did find out that as soon as I get on Long Term Disabilities I can file paperwork to get my college loans written off.  I have to make sure my beneficial on my life insurance policy is update, collecting and saving my receipts so I can get a little bit back from Uncle Sam, nothing compared to what I have to spend in order to live like I don’t know half my fucking salary.  And I still have to write what will be a very smart ass WILL and yes I will plan my own funeral…hahahaahahah…it will be a entertaining to say the least….

  I know what many of you are thinking “Don’t talk like that”…HELLO its FUCKING STAGE IV it’s not Stage 0-III breast cancer that has a chance of being bet, its INCURABLE but treatable with today’s technology.  It actually pisses me off to some extent when I hear “don’t talk like that” ummmm peps it is  my REALITY, the only power I really have is planning how I am going to exit stage left.  You know it could be under 5 years like the statistics or hell it could be 20+ like 3% of Stage IVers.  My plan is not to be 3% statistics bracket of 20+ years of irate the shit of people.  

  You know what there isn’t even a protocol for my treatment; my doctor’s come up with my plan on the fly and sometimes just schedule apptointments for there entertainment.  Because I am noting like the stereotypical breast cancer patient, I am the person acting like a child rolling down the hallway on the stool pissing off the head RN, you know when I arrive you can hear my laugh echoing the hall, that and all the nurses disappear to where ever my local happens to be to hear of my last adventures. Luckily I am at a Research Hospital with a dedicated Cancer Center, and a world’s expert on my type of cancer happens to be there. 

  But seriously let’s be honest it’s a damn waiting game…I have to wait a week to find out via email if there are cancer cells floating in my blood…….Well it wasn’t exactly a week Doc emailed me on Friday to say U CLEAN, this clears the way for my ta ta exchange….I had planned to start working out (roller skating) this week but then a can decided to jump out of the fridge and broke my third little toe on the right foot…Guess that is a sign to spend another month on my ass playing video games, lol.   And plot how I am going to convince the Docs to let me play RollerDerby…you only live once mine as well do whatever the HELL you feel like…just saying…Hey we could start a family roller derby league……All I got to say is I got Tonya on my team I can see her know plowing people over….
  
  

• Tuesday, February 8, 2011 8:30 PM, EST

  So I just finished with my taxes, nice to know I spent half my salary on Medical Bills....lol.  At least Uncle Sam is going to give a little back...
  
  It looks like I may have found my first long term aggravation of my never ending battle with Stage IV TNBC pain and swelling of my hands (aka possibly arthritis).  Hoping that warm weather will decrease the pain/irritation my hands are experiencing. But, damn weather man just said snow...seriously
  
  I will have to wait a week for the lab rats to run a test on my blood to see if there is any cancer tumors swimming around the body.  If there is than hellooooo Chemo....If it is clear its off to the rheumatolgist to get the hands checked out.
  
  I also had to have x-rays of my sternum and ribs to check the bones since I have been having issues with those areas.  Couldn't get another scan due to having a CT Scan at the end of December...and the Doc not wanting to turn me into a walking glow stick (think superbowl half time show....)
  
  I now have to make an appointment with the ENT to check my sinuses, (once Uncle Sam gives me my refund) then report back to Doc on the findings. Because we know its not the teeth, $11,000 worth of repairs, another 5g to go, yes you read that right damn chemo and my teeth just don't get along....On the bright side all the teeth will be protected the next time around with Chemo. There will still be more repairs after that next 5g in March...dammit.
  
  Still have a few more surgeries to go on the ta ta's, will be having the exchange surgery sometime in April, and then after that will be the aerola tatoo on, still haven't decided if I will get the nipple reconstructed, not real keen on another ass surgery.   I bet your wondering what the Hell does your ass have to due with the ta ta's....Well....they take skin from your ass to make the nipple...yes your ASS becasue it is closest in color/texture to the real thing.
  
  I guess you could call it an ass-nipple...I think the Oxy I took has just kicked in....I could just leave them alone after the exchange surgery, then I will have ta ta's like a Barbie Doll......just not the figure....well I will stop here...stay tune for further updates from HDN...(Heidi's Dome Network)....live from a Den near you....
  
  

• Friday, February 4, 2011 8:48 PM, EST

  Thursday, Feb. 3rd

  I am sitting on my lazy boy catching up on some primetime shows, trying to warm-up my hands using the laptop.  Hopefully I will be able to get something on Tuesday that will help the hands, because seriously the aching and swelling is really getting on my nerves…lol  I am wondering if it is just the nerve endings coming back to life from all the poison that was pumped into my system over the course of a year.  The colder it gets the worse the hands feel, warm-up them up helps a little but the still ache.  I just lathered up the hands up with aquaphor trying to treat my dry skin.

  Friday, Feb 4th

  I don’t like to take my Pain Med in the day but had no choice today, my hands where aching and hurting.  The hands were still swollen after taking pain meds but I didn’t feel the pain in my fingers, but my knee started to hurt…dam it.  My port for some reason has decided to start tingling tonight, I think it knows it’s about to get flushed in four days.  
  I am compiling all my medical bills so I can file my taxes, dam I spent a lot of money, just got to go to the Pharmacy this weekend and get a print of all my meds I purchased for the year.  Looks like I will be able to pay off some of my credit cards with the money I get back from Uncle Sam.  Maybe I will finally be able to get a kitty or miniature doggie.
  
  

• Saturday, January 29, 2011 6:30 PM, EST

  

  I went in today (a Saturday) to four laundry carts over flowing, with just one team, which happened to be mine Track & Field. I guess I shouldn’t have left early if you consider 5pm early, lol, technically I worked 9 to 5.  The day became laughable when my arms got fatigued folding towels and then carrying them to the locker room.  
  Then some of the athletes wanted to know who picked out the uniforms, I said the coaches, their reply “I thought so, its straight out of the 80’s” apparently the uniforms aren’t flashy enough they are simple red and white uniforms, ummm if I am not mistaken we are the Red and White from State…lol…..had to give them a history lesson and showed them what their coaches wore….”OH HELL NO” and a look of shock on their face as they gazed up at the uniforms that are displayed (a bit dusty, Ok really dusty) on the wall in the ER.  They are body suites and one of them seriously looks just like a swim suit a failed attempt like the Nike Unitard, it was circa 1995ish, and there is photographic evidence of the Women’s Head Coach wearing said suit with the standard 90’s puffy hair and all.

  The muscles are probably fatigued due to lack of water, but I haven’t quite gotten over the upchucking caused by the last time I tried to drink water.  May try to drink some orange juice or that bottle of V-8 sitting in the fridge, to go along with the Mt. Dew, water will just have to wait for another attempt.  It would probably be smart to drink some water before tomorrow’s 15 minute walk on a pink treadmill but hey not going to happen.  
  Apparently they have changed the time I am to walk, at first they were saying before the game and know it looks like it will be during the 2nd half of the basketball game 230 to 245.  So it will be lunch at 11am with the family that is driving up from the coast.

  On top of that cold weather, latex gloves and folding towels have dried my hands out causing dryness and cracking damn Parker gene’s.  Oh and let’s not forget that the fingers are swollen too and why is the bottom of my feet numb?   My hands are currently glistening with Aquaphor lotion, that will hopefully relieve the dry skin and itching.   
  Getting sleepy but as soon as I lay down, I will be wide awake, Oh sleep how a miss u, sleepy at 5pm wide awake at 1am, we may have to attempt a beer before bed to see if that puts me to sleep.  Oh wait I forgot to pick some up, Oh well maybe tomorrow night.  At least I remembered to order tickets for the Katy Perry concert that just happens to be on my birthday in June.
  
  

• Monday, January 24, 2011 9:49 PM, EST

  Some days like the last couple I had the energy and bounce I had before being diagnosed with Stage IV, actually completed a project in one day.  But that doesn’t last long I actually slept more than I was awake over the weekend.  I feel I am getting to close to feeling like I did pre 2007.
  
  I have decided It is time to take back some normality to my chaotic world, to forget about the time bomb clicking away.  I have decided that I must create a routine to ensure I actually eat, get enough sleep, and actually get everything I need to do and work and home done.  Some days I do anything to keep my mind off cancer but it doesn’t last long I find myself on breastcancer.org, tnbc, or young survival reading and responding.  The hardest thing is there are very few Stage IV at my age, not cool being the youngest person in the waiting room.  Often getting strange looks, and the nurses doing a double check of your birthdate.

  I actually broke out my Cancer Eating Well book on Sunday, tonight I had boiled shrimp and some green vegetables from the freezer it was collards or spinach I have no clue but it was green and from Phyllis garden/kitchen.   I have been making a shopping list of ingredients so I can actually prepare my meals.   I can tell you I will be eating a lot of tuna fish, it’s cheap and easy to prepare.  I will be stock piling my desk at work along with some other snacks so I can maybe get to 2,000 calories.  As it stands know I am lucky to even make it to 1,000 calories a day.   Might have to start drinking nutrition shakes, the last time I brought them in Chad called me an Old Lady and asked when I would start brining in the Ensure, LOL. 

  Sorry folks but the Mt. Dew isn’t going anywhere until I stop up chucking water, it has been three weeks since I have drunk water.  My stomach has refused to accept it even though my muscles are clamoring for it.  

  I have been trying to recall a time when I had no dr. appointments like the year 2007.  Just looked at my I Touch Calendar over the next three weeks I have a total of seven doctor appointments and 1 dentist.  Two of those will be the stress causing appointments, the dreaded blood work and Chest Scan and/or Chest X-ray.   If I pass the test another 3 months of bliss, no chemo, If I fail hello clippers the Track team/Men’s Soccer will be shaving the head.  I will again try to get on the PEDS floor, I have been informed they have video games there.   I wonder if they have a PS3 or XBOX 360 on the Chemo Floor know?  Chemo wasn’t bad I actually got more sick thinking about the Chemo than I did after treatment.  The thought of getting my “port accessed” as the nurses put it and then being hooked up to this little bag that believe it or not cost $15,000 for a 30 minutes of treatment.  I actually worked myself up so much that I up chucked in the car on the way to Chemo one morning, guess that is what I get for waking up late and getting breakfast at Hardee’s.

  Now I am an information station, I am the first to get called when one of my cousins gets a scare.  I am glad to be able to help and answer the million questions they have.  The hardest is when my 15 year old cousin was diagnosed with ALS, and she asked me if it would hurt when she died as we sat in my living room the night before she was to get a feeding tube.  I told her I had no clue everyone was different we talked about her mom who died of ALS at 24 and my mom who died at home of ovarian cancer.   She fought a brave fight and passed away this year at 16 like my mom she went out on her own terms at home. 
  
  

• Thursday, January 13, 2011 8:58 PM, EST

  I have now had six chiropractor appts., the back is feeling better, although I still have pains in the liver.  I have six more appts. hopefully my spine and neck will be in good working order after that.
  
  Once one pain is fixed another apparently must take its place.  I got my permanent crowns put in on Wednesday still, trying to get use to the them.   They are still sensitive to hot and cold and the gums are sore, I have a follow up appt. at the end of the month.
  
  The back feels better, meaning the knee now hurts, I tweaked it going up the stairs yesterday.  Even the Oxy isn't working on the pain, guess I am just going to have to deal with pain.  It doesn't help that my job requires standing on a concrete floor for 10 hours. 
  
  Got to love track season, it took me 6 hours to number and pack 35 uniform bags.  I guess thats what happens when you triple the amount of competition gear you give a team.  That and the fact you have only recieved half of your order, the part you had to pay for you got while the free stuff will not be here until the end of the month.
  
  Looking forward to alot of hours and overtime, I got to pay for my next round of crowns, another $8,000 to get my bottom teeth fixed.
  
  According to my trusty I touch, the next ONC appt is Feb. 8th, when scanxiety should start becasue  a CT scan is on the agenda for Feb. 11th.   I think I have an Amos appt. soon but apparently I haven't plugged it into my calendar, gots to find the appt. reminder.   Still have a March appt with my plastic

• Friday, December 31, 2010 10:48 PM, EST

  12/31/2010 Luckily my doctor who happened to be on vacation for the New Years when I got my scan with limited email access was still able to get my scan results, you got to love the technology age………Still Cancer free or NED whatever you want to call it, she believes the aches and pains are pulled muscles from the surgery and hopefully the Chiropractor can get the kinks out.  I still want to know how I broke that rib that keeps coming up as a healed fracture. Tomorrows agenda includes getting two cases of water to get the contrast from the CAT Scan out of my system my digestive system isn’t happy and that isn’t good for a butt that is still healing from surgery.  
  I also need to get a few more items to finish off my living room remodel, so I can resume my dollhouse and model building.  Need to finish off a garage I am building for my dad, repair the beach house I made for my mom her last Christmas (for those of you who don't know she died of ovarian cancer), plus several other projects I got lined up for various relatives but since you are probably reading this I will not divulge the projects. 
  For Rene thank-you for the Wal-mart gift card…..I couldn’t resist I had to get that Video Barbie Girl…..and yes Tonya I know what you are thinking…Heidi is going to make Barbie/Gi Joe Adventure Movies….I know a crazy niece of yours that would be great for Character Voices…….remote control vehicles and a Barbie with an on board camera..hahahahahahhahahaah
  
  

• Thursday, December 30, 2010 12:23 PM, EST

  12/28/2010

  When will life return to Normal after cancer?  The answer is never, life becomes full of uncertainty, what does that ache you feel mean, waiting in the lobby as Sandee tries to get the insurance company to sign off on a CAT scan to see if you have a blood clot or if the METS in your liver is growing again.  I had a weriod pain that traveled through my lung and stopped in the center of my back, raising the question is it a blood clot from my recent surgery. 

  But its 5’clock and everyone is going home, so no CAT scan instead you get another blood test that takes an hour to read if it is low your fine if not you have to return immediately to the hospital and the CAT scan is paid for because a clot is considered life threatening. 

  Lucky the call as I approached exit 295 was good news, no blood clot but still no answer on whether the METS are multipyling in the liver until another Scan.   Now you sit back and wait for Sandee to get approval from the insurance company to see when you can get your next scan since it hasn’t been three months since your last one.  

  Dr. Collichio my ONC thinks and hopes the pain is just related to your most recent surgery a combination of the position I was in doing the surgery and the anesthesia.  In two days I return to see Dr. Rahbar the GI doctor to check on the surgery Endorectal advancement flap my other doctors couldn’t believe what had to be done to fix a fissure. 
  
  I wonder how many gigabytes my file is now since everything including scans are keep on the hard drive instead of filing cabinet.
  
  12/30/2010
  Got word on the 29th that the insurance company approved the CAT Scan, Sandee scheduled it after my GI Appt. in Memorial Hospital, in the ACC building.  Luckily today I didn’t have to pay for parking because it’s a mandatory day off for state workers that is why I am sitting on my butt watching tv, playing on the internet and playing the ps3…which also means no ticket takers. 
  
  I again had the pain in the lung that picked up where it left off but didn’t seem to move; instead I get hot and then sweats until the pain subsides 45 minutes to 1 hour later.  
  
  Now I have to wait until next year (Jan 4th) to find out if it is just phantom pains or my liver METS back.  I also have a chiropractor appointment that will  hopefully take care of the tight muscles.
  
  

• Friday, December 24, 2010 12:13 AM, EST

  Well I have officially add another doctor to my entourage a chiropractor to go with my plastic surgeon, my cancer surgeon, my oncologist, my GI surgeon, my ENT, my GYN, my radiation oncologist and my dermatologist, still need to add a Primary Doctor so I can get a tetanus shot.

  Sometimes I wish I was back on Chemo, I think I had less symptoms then.  Surgeries, Surgeries, Surgeries that is all I am doing trying to fix things that most likely can never be fixed…..24 ways to fix something all have a 75% failure rate.  My other doctors saying damn your brave to go through that last surgery, or another shocked that you are still alive after she found the lump that started your journey as a STAGE IV breast cancer patient which only 6% are diagnosed with right out of the gate.

  An entire body that aches, hot/cold/hot/cold aka Chemopause, tight muscles, numbness on your left side, muscles that spasm involuntary and especially when you get excited watching tv.
  Chugging water, Gatorade, soda and juice and still have cotton mouth.  Trying to sleep with a mind that goes and goes  like the energizer bunny, finally getting into deep REM only to wake up two hours later wide awake in a cold sweat, or going to the bathroom because of all the liquids you chugged that day, these are my days post Chemo. 

  One minute you are in sweats sitting in your Den watching tv, the next you are buck naked because your hot, a temperature that likes to fluctuate in the 94.6 to 97.8 range. Wondering and preparing for when the next round will start or at least the day your body at least feels somewhat normal.  
  Everyone thinking oh she is fine now, she is not on chemo, or not realizing that yes you are 32 but your body isn’t.   Chemo age’s your body decades beyond its years from the poison that is pumped into your system in an attempt to kill those fast dividing cells.
  
  This is the life I live now, I know what I will die of but not when...like the commerical says there is no expiration date on my foot.  Everyday could be your last so live the way you want to becasue there are no second chances.
  
  

• Monday, December 13, 2010 6:45 PM, EST

  If it isn’t cancer it’s another thing, still trying to get the fissures taken care off.  It looks like two more surgeries depending on how this one heals.  As usual I ended up with the same nurse who remembered where I worked all though the Block S on my sweat pants and top gave a hint to my identity, but she even recalled the sports I work with.

  On top of fissure surgeries I am going to have another ta-tas surgery to switch out my saline for silicone and get the scar tissue taken out that was the result of having to change my treatment from Chemo to Radiation due to the aforementioned fissure that resulted in an infection and emergency surgery last year.

  My plan is to have the ta-tas surgery in April but I may move it up depending on down time, I forgot to ask about drainage tubes, and I forgot to factor in delivery of Fall 2011 boxes.  I figure if I don’t have drain tubes I could have the surgery during the ACC indoor Championships in February, the team will be gone Wednesday-Sunday.  I just want be able to lift anything for a couple of weeks, that way I will be prepared for when all the new gear comes in, it is quite funny the first thing out of my doctor’s mouth “What does your team calendar look like?”  Only in Chapel Hill can you work your treatment around the sport calendar.  

  Hopefully having much of December off will help with the healing process and making my sister due all the having lifting will also help.   I am hoping some home cooked meals will also help with the healing, hopefully the Parker Christmas dinner will have some homemade creamy corn and lots of deviled eggs so me and Rene don’t have to fight over them.
  
  

• Saturday, November 27, 2010 11:10 AM, EST

  Young and Living with Stage IV Breast Cancer

  As children we wished we were older because it was cool, as adults we wish we were children because then life was care free.   I remember spending summers trouncing trough the woods trying to keep up with my older sister and cousins.  We didn’t have a care in the world at day break we were outside and sundown we made damn sure we were in the house.  

  Now I find myself part of an unusual statistic young breast cancer patient, you know your case is rare when the doctors tell you there is no standard of treatment for someone one your age.   Then you are allergic to the first treatment which only costs $250 so instead I get the $15,000 treatment, only I would be allergic to the cheap stuff.   The doctors are making up the treatment as they go along, the goal to manage the cancer I already have and stop it from spreading beyond where it has already landed.

  What many don’t realize that Stage IV isn’t curable it is only manageable through, Chemotherapy and any new treatments that are found the goal which from what I read only 1% to 5% have extended periods of NED (No Evidence of Disease), I am currently 1 yr and 2 months in NED.   I will spend the rest of my life in and out of UNC Hospital getting treatment, scans, injections, blood work, and every test known to man.   The form of Cancer I have  is also unique Triple Negative meaning that hormones has no effect on my cancer, Chemo is the only proven treatment for TNBC.

  “The reality is that breast cancer is a chronic disease that may go in and out of remission over time. The aim of medicine at present is not cure, but permanent and complete remission, or the disappearance of any diagnostic sign of disease.”  http://www.cancerlynx.com/relapse.html

  Four years ago I would have laughed if I heard the phrase Chemobrain, but I am here to tell you it is real.  Caring around a planner has helped a little but I still forget things or remember it the next day, sometimes I swear I sent say an email, only after searching the sent box realize that I didn’t.  Staying focus and concentration on what I need to do is a daily challenge both at home and work.    A daily routine has helped in keeping focused and on task but there are days when I am like huh. 

  Another big challenge is fatigue and wondering if the aches and pains are the cancer spreading beyond the lungs and liver to other parts of the body even though I just had a scan the week before.   Fighting a daily battle with fatigue which is exacerbated by no appetite and standing in front of the fridge trying to figure out what will stay down and give me the energy I need.   Definitely need to buy more Boost, tuna fish seem to help, but that isn’t going to give me the calories I need.  Hopefully after meeting with the Nutritionist at UNC I can come up with a plan for food consumption.

  The chemo treatments have forever changed the Taste buds and my appetite.  The taste buds have declared war with the stomach; the two appear to have a never ending battle.  My body is calling for water  but my stomach has made it known that it will not stand for any water intake, water go down water come up bringing any food that happened to be hanging out in the stomach.   Soda seems to comfort the stomach although the taste buds have vetoed every soda except for Mountain Dew, but like the others its days are numbered what led to the death of the other sodas has begun with Dew.  Orange Juice along with Yoo Hoo seems to be in the running for the new position of favorite drink.

  As the weeks and days add up so does the bills, seriously have you seen some of the charges on those hospitals bills?  Thank-God for State Insurance,  being young with few symptoms and having the energy to work overtime.

  Info on My Cancer

  Type: Triple Negative Breast Cancer (TNBC)

  Stage: IV meaning it has spread to other organs, in my case the Liver and Lungs.

  http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-staging

  What does this mean? That the only treatment available for those with TNBC is a life time of Chemotherapy and any new treatments that come on the market, the latest is a PARP Inhibitor http://www.parp-inhibitors.com/. This means that I will have to be on Chemotherapy for life, unless I reach the status of NED, which I am currently in.

  What is NED? No Evidence of Disease, meaning that any cancer in my body isn’t big enough for current test to pick up.   The Big C can come back at any time that is why my doctors are watching me like a Hawk.
  
  

• Friday, November 19, 2010 6:52 PM, EST

  Looks like another day surgery scheduled for Dec. 13th, the plan to further explore which will be by my count 3 surgeons 4 surgeries trying to fix said fissure not counting the upcoming which will be my fifth surgery.
  
  I visit the Plastic surgeon on Dec. 8th to schedule another surgery.  I just can't seem to pry myself away from the Hill.  I think they just love seeing my decked out in NC State Gear. 
  
  I felt like a new toy sitting in the window of a Toy Shop in Manhattan as I was sitting in the waiting room at the GI Clinic in the Main Hospital.  The guy checking me in is a Huge Carolina Fan, as soon as he looked up "Ohhhhhhhh, covering one of his eyes" me "What u think your retinas are going to burn if u stare at red too long"  He got a good chuckle, and said wait to the girls in the back see you.  He finished checking me in, and I got comfortable in the waiting room. 
  
  He immediately ran to the back and brought out a female doctor out to the lobby to show me off.....doc"I can't believe you came up in here wearing that, who you seeing?" 
  
  It was very entertaining, when I don't wear red in the cancer hosptial or the Ambulartory Care Center they immediately take a temperature or order a scan to insure I am not sick.  Or I get "damn I didn't recognize you without red on".
  
  In other news I am still NED, hahahahahahaahahahah u suck cancer..
  
  

• Sunday, November 14, 2010 1:45 PM, EST

  According to my trusty calendar I have an appt, Friday with the GI doctor suppose to be scheduling another day surgery that may or may not fix my fissure.   So Phyllis or Tina I may need a responsible adult to take me and drive me home.
  
  I just counted my antibotics, looks like I will be finished with them on saturday, I am tired of pills.  I will still have to take Vitamin D everday, I have been slacking that may be why I still have a bald spot on top of my head.  Hopefully the rash casued by the antibotics will also be gone when the pills run out.
  
  
  

• Friday, November 12, 2010 8:53 PM, EST

  Just had one of three dentist appointments to fix damage caused by what the dentist called a perfect storm, dry mouth and stomach acid ate away my enamual of my teeth especially the front.  Now I am officially broke, State medical insurance excellent, State Dental Plan sucks.
  
  My latest PET Scan in October was once again clean NED (no evidence of diesease).  I already know the next drug I will be on when/if the dreaded C comes back its a new drug called PARP inihitor.