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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.
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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.
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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.htmlCurrently
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 symptomsPatients
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 symptomsDryness
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]
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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.
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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.
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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.
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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???
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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…
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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.fullhttp://labtestsonline.org/understanding/conditions/sjogrenThe
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.phpKnow
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.htmThere
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 SyndromeSjögren’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-informationI
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.htmI
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.htmlI
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.htmI
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.htmlhttp://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.
-
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...
-
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.htmlI
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.
-
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.
-
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.
-
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.
-
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.
-
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.....
-
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
-
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.
-
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.
-
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).
-
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.
-
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.
-
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.
-
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.
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.
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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.
