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Friday, February 10, 2017

CT Results are a Mixed Review more Tests Coming......

Side Effects Mounting Old and New

We are still at a point of more questions than answers for 2 different systems…my lungs and my digestive system…….

Lungs


My last 2 CT Scans had some concerning issues on them I didn’t want to talk about them until after the 2nd scan.  The scan showed a nodule in my left main Bronchus which was flagged in my 1st scan and the Radiologist recommended another scan in 3 months which I had this past week to see if the nodule was still there and it was.

The next step is a consultation with a Dr. Riveria (Pulmonary) and a possible bronchoscope may be in my future.

Digestive System

Many may not know but in the Summer of 2003 I had emergency surgery to fix what I had thought was just a blister on my ass from my bicycle in fact it was a Anal Fissure that was infected and had spread to my blood stream.  This Anal Fissure had plagued me all the way up to my Breast Cancer dx, 3 of my dozen surgeries had to do with my ass included a 2nd oh shit it’s in my blood stream again and I have no immune system because I am on Chemo.

At the same time I was having issues of bloating, gas, reflux and abdominal pain which didn’t seem to raise any alarm with the GI doctor’s.  I had 2 one for the top of the digestive system and 1 for the bottom.  I had a scope put down my throat to my stomach and the only thing found was a hiatal hernia which was causing GERD.  I was put on Nexium to control the GERD which seemed to help with my digestive system but it didn’t fix everything.   I eliminated many things from my diet which seemed to help the digestive issue, but I was still getting periodic severe abdominal pain.   I have had ever scan one can think of including an ultra sound and they found nothing so I was like screw it I would just deal with that was 2013.

Fast forward too now I noticed this past year that abdominal pain was getting more frequent and seemed to be in tow with flares of inflammation caused my Sjogren’s.   Well what do you know finally proof on my scans the following was seen per Radiologist:  “Diminutive pancreas with diminished arterial enhancement, this appearance suggests chronic pancreatitis, possibly auto-immune since she has Sjogren’s”

So my oncologist told me whoever I saw first her or my Rheum doctor a Lipase test needed to be done to test the enzymes my Pancreas was making.  Well I saw my Onc first so she had the test down and I just got the result today it was below the normal range and I discovered that my Lipase was tested before and had been below normal as well so it has steadily been declining.

Discovering that the Lipase test had been done before and the fact I found other things I didn’t know about I stared to look at all my other tests going back to 2008 not all of them are online but the majority are and I discovered that there where clues to my digestive issues but they were missed seeing that fighting my Breast Cancer was more important.   Looking at my history I think all of it is caused by the Sjogren’s. 

Some of what I discovered so far
1. Thickened terminal ileum which may be inflammatory
2. Diverticulosis

The first one comes and goes on my scans, which makes me wonder if it’s the Sjogren’s since the flares aka inflammation attacks comes and goes. 

I have been looking up what low lipase could mean and low and behold exactly what I thought was going on that I haven’t been properly digesting food.   I am not going any to any details till I see the doctor’s 
I am still combing through all my records making notes for my various Doctor Appointments which I will see in the following weeks/months in order

Dermatology
Rheumatology
Pulmonary
Gastroenterologist
Vein Doctors
Rheumatology
Oncology

I also may have another eye doctor's appointment I just went this month and they put some new tear duct plugs, a new design that are suppose to be like dissolvable stitches.  Yea I new I should have said hell no cause my eyes are PISSED really PISSED.  They have been painful, burning even more light sensitive. Last time I had tear duct plugs led me to have a scratched cornea and an eye infection. 

The issue with my Pancreas may be the key to why I have swelling of my legs, varicose veins and other items that have been adversely affecting me the last couple of years.  


Wednesday, August 24, 2016

Its been a while..

Sorry about the lag in posts I have been having issues with my eyes, there are days when it can't handle black on white...as in black print on white background. That includes the computer and programs like word, excel and the Blogger New Post Page.....

Nothing like a 14 hour nap with crazy dreams and sleeping the day light away, now time to try and put some food in the tummy so I can have some energy. I feel an eye flare from H E double hockey sticks looks like the daylight hours may be over. I was trying to change my schedule back to daylight so I could see people and go to family events, that attempt seems to be a failure. One person will be happy my kitty RileyCoyote Humphrey she likes me up at night to entertain, play and sing to her she don't apparently like to play with other cats (we have tried to find her a feline playmate...FAILURE).

I will have a medical adventure up later this week change in medicine, weight loss, eye issues, skin issues..etc.

Saturday, June 4, 2016

Thought of the Day



No one understands what a Metastatic Breast Cancer Patient goes thru than another person.  Those around you don’t realize there are only a few things one can control a big one is their surroundings and comforts.   A big mistake family and friends make is to change or alter their environment on the premise they are helping, but doing something with guidance and consent of the one battling cancer can cause undue stress .

Tuesday, May 31, 2016

Damned if I do Damned if I don't

Damned if I do Damned if I don’t, what am I talking about exercise, walking and swimming.   It has been awhile with a lack of energy I hadn’t go out much but since the visit with my Pain Management Doctor she adjusted my meds which gave helped a lot allowing me to increase my overall activity.    Even my sister noticed but like always there was another shoe to drop, just like when I was working the more I did the more swelling of my feet and legs.  When I went to my Oncologist at the beginning of May she was concerned with the swelling of my legs, it isn’t the first time I have had swelling basically my entire body has been swollen since Chemo ended.  My platelet count has been at the minimum or well below, as are my White and Red Blood Cell, heck all my numbers are at the minimum.

 I had my Rhemu appointment last week on Thursday my Uncle Noland who had just as many Doctor appointments at least mine is at one hospital his is at like 3 different hospitals in different cities.  It is always fun driving up and back we have similar interests so time flies on the trip. The sad part is one topic we shouldn’t have in common is medicine me in my 30’s him in his 60’s and we are talking some of the same meds.  It is hilarious when we pull over at check point Charlie Meadows to eat both of us sliding out of the truck slowly moving as our sore and swollen joints creak and we limp right on in.  Yes, my body is a 30 something year old on the exterior but on the interior I am knocking at the 70 to 80 year old range.   That is the price I had to pay in order to see my 30th birthday in 2008 when I was told you’re not suppose to be 29 with breast cancer not just any kind the most aggressive one that at that time there was few options but a lot with future treatment options Triple Negative, and it was Terminal Stage IV.

As treatments and science develops new and improved treatment, the long term effects of aggressive Stage IV cancer isn’t know.  More and More women and men are living longer with Stage IV then those of the past.   In my case due to a Family Tree that doesn’t branch means that bad gene’s have been passed down and damned if I didn’t basically get every damn one.  Yes people if you are a Local whose family had been at least a 100 years your tree doesn’t branch contrary to what you have been told.

Let’s see Breast Cancer, Sjogren’s, Raynaud’s and for the hell of it lets add Varicose Veins yeah just like Dad and Grandma Humphrey  Sometime this week maybe today  I have to Johnson’s Pharmacy with my prescription to get knee high compression socks.  I will have to decrease what little walking I was doing and try the swimming pool since the more walking I do the more swollen my legs get.  My veins are having circulation issues from the varicose veins and inflammation from the Sjogren’s.

Like my oncologist my Rhemu doctor was concerned as well about the swelling, and order another blood and urine test.  I got the urine test which was basically good, still waiting for the blood test, he likes to call with results and with the holiday this has been a long weekend.   Hopefully he calls and has some plan to deal with this swelling; my entire body is swollen at the moment and is painful and irritating.  On a bright note I lost 20 pounds in 3 weeks without doing anything.


All I want to be able to do is to get back to my weight before cancer when I use to ride 4 miles round trip to work and back to my apartment.  Or better yet when I was a cabin counselor at Camp Seafarer in shape and tan where I spent most of the time up in tall stand telling kids to step up knock the arrow and shot.   Yes I was an archery instructor back in the day, wish I could go back to working camps but this time it would have to be indoors like the Arts and Crafts. 

Tuesday, December 22, 2015

Flare is like a Roadblock that makes Life Unpredictable


It is hard to explain to people why you cannot go with the flow any more or just jump up on a whim to go to a get together.  Honestly it is hard for me to explain why I do what I do but I am doing what is best for my mind body and soul.    Flares can sneak up on you especially when your suppressed immune system is desperately trying to fend off an infection.   For the most part I slept out cold from 2 amish to 11 am, then had to go out and get some food so I can have some energy.  I then did my daily exercise which involves walking around the woods and sometimes cleaning up sections, today it was about an hour, really it was only picking up limbs and cutting some vines.  I should have listened to my body when it said Knock, Knock, You need to Stop.  Nope my dumbass keeps going knowing that I needed to have energy to wash clothes and dishes.  For some reason Freaking Silverware disappears and damn we use spoons way too much, it seems they are always in the sink dirty.

My equilibrium seems to be off it has been for a little over a week, luckily I have wither had my walking stick or have been able to grab myself to prevent me from falling.  I am not sure if is the Sjogren’s attacking my ears or is the eyes or combo of eyes and ears.  Cause sometimes if I move my head to fast my eyes have issued focusing and it causes dizziness and a trip to the porcelain god.  I am hoping that it is just the Sjogren’s, I am emailing my Oncologist, to let her know of the equilibrium issues.  I also had issues holding and trying to use pliers to get a broken light bulb out of a lamp (don’t ask it is the 3rd time I have down this).

Today as soon as I got back in from my adventure a wavy of drowsiness hit, then a throbbing pain behind my left eye.  Lights on Lights off which one will help relieve whatever black cloud that surrounds me.  Move and the joints feel better, continue to walk and pain radiates from everything.  Even a simple touch or leaning on the arm of the sofa is painful.  Basically any part of the body is sore to the touch; any area that has been operated on has even more pain.  Then there is the temperature controls hot, cold, hot my body has issues regulating and I keep getting a heat rash in the same place my right underarm.   Waves of nausea, struggling to keep the eyes open, closing the eyes for a quick nap, ok more like closing the eye toil the wave of nausea passes.  I can already start to hear some crackling in my lungs, and my sinus are draining down the back of my throat, I am coughing up some of gook that is draining down.  The last time I had this it lead to a bad case of walking pneumonia.

Since I already overdid it I decided to knock out the dishes and laundry, while doing laundry Zeus was stuck outside, I decided to let him in at 9pm even though I still had one more load.  Normally if I am the only one home he is nice instead of being an ass…yeah right.  As usual his highness only came in half way meaning I had to drop a piece of cheese to get him in the rest of the way.  I slowly went to unbuckle the leash and I heard that muttering growl. Luckily  my relaxes was on point at that moment allowing me to step back quickly when his ass jumped up, but I had the bribe of all bribes the golden cheese.  

He was fine after getting his cheese allowing me to finish up my once a month laundry affair.  For those who don’t know my and Zeus have a love hate relationship, I have bestowed the name of Lord Jackass of the dogs upon him.  He loved me once when I first moved back while we were revamping the garage to an apartment I stayed in the main house meaning me and Zeus saw a lot of one another.  Then I moved into the garage and got a Kitten name Riley aka Queen RileyCoyote.  Therefore Lord Jackass no longer likes me unless I am the only one around.

 As I am typing sharp stinging pain is shooting up my fingers, and my body feels like it was in fight with UFC Champ Holly Holm. Bones, muscles and joint are all aching from the arthritis to the Sjogren’s and freaking fibromyalgia.   I can feel the inflammation running rapid, move in a certain way and you will hear a pop.  The pop gives a short release of pressure from of the joints, though it is very short lived as the fluid builds back up.  I seriously need to find a massage therapist that has experience with Cancer and Sjogren’s patients.  

Every person is different in how they handle their cancer and flares from Sjogren’s each symptom has to be treated individual.  I am unique in the fact that not only do I have Sjogren’s and Fibro I also have chronic pain stemming from my fight with Terminal cancer that started in 2008.  I have had 12 surgeries, 31 days of radiation, 2 years of muscle tightness (left side) from the breast implants, 3 major infections, 3 rounds of chemo (a few of those rounds dosage was increased due to my lack of side effects) all this was a 2 year period.  Doctor's will even admit that they don't know what the repercussions wll be Why?  Simple put by what the doctor's said, "You're 29 and not suppose to be Stage IV" then "Their is no Protocol for someone your age with Stage IV so we are going to have to make up the protocol as we go along"   Recently some researches overseas have discover what chemo drugs  cause Chemo Brain and I had one of them.  Extreme Fatigue and along with Chemo is a royal pain in my behind. 

Today my symptoms required a quite stress free zone that is warm and cozy with a bowl of mac and cheese.  Many don’t realize that I enjoy solitude especially when I am not feeling good and that I need to be told in advance of events.   Quiet solitude is what I enjoy though I would like to join family and friends out on the town or outside but majority of the time that isn’t in the cards.  It doesn’t mean I am being anti-social if you want to talk to me IM on facebook or text me, if I am having a bad day it may take a day or two for me to reply but I will.  Me and talking on phones isn’t happening unless I have to talk to my doctor’s.  I despise talking on phones that and my voice box can’t handle talking, my voice will start crackling then I will lose my voice entirely. 

Friday, December 18, 2015

Extreme Fatigue Enemy of Mine

Extreme Fatigue is back with a vengeance had a good run until I increased my walking, when I haven't figured out how to increase my food intake, a fatal mistake. Restful sleep is all but a memory but I must figure out how to get to sleep today.  I need to decorate the tree and most important be awake, rested and alert for Saturday afternoon when we go to the movies to see Star Wars. I am pretty sure I know what are some of the causes are problem is figuring out a solution.

I am pretty sure my Rheum will be switching me to the injection form of Methotrexate instead of the pills.  We discussed it a previous appointment I choose to increase the pill dosage first, due to the concerns from my Oncologist about further oppression of my immune system will have on my Cancer.

It is frustrating when fixing one issue causes others to be thrown into a downward spiral.  Pain and stiffness in legs and muscles meant I needed to increase activity, so I increase my walking.   Issue with that is my digestive system is jacked up in so many ways that right now I can only hold down organic turkey covered with a spice called Tumeric (it has helped immensely with some of my inflammation) with red onions, mushrooms and cheese which I eat with broken up taco shells.  For some reason only the Walmart brand seems to stay in the stomach.  I have been able other items so I can switch it up some, celery, green onions, corn, rice have made an appearance.  I also put it on top of a baked potato with sour cream topping or ranch on the side.  All depends on the mode of my stomach and taste buds or lack of taste buds.   The amount I eat depends greatly, it isn't very much which also plays a  part in the energy.  And when I run out fuel it can cause nausea which leads to upchucking of what ever is left in the digestive process or stomach acid.

The nausea is also being caused by my inability to properly regulate temperature which is made worse with the fact I have Raynauds.  Overheating also causes nausea which leads me to upchucking if I can't cool off fast enough.  Then there is my eyes extreme sensitivity to light even and if not worse at night if I am walking around with a flashlight.  Not sure why put my eyes and maybe equilibrium is playing apart but it happens in the day time too while my eyes have issues adjusting when I move my head.  It doesn't happen all the time and sometimes it happens at the same time I am having an overheating issue.

Looking at my blood tests I am always on the low end of everything, especially minerals like potassium and sodium.  My iron and vitamin D are low as well while researching the foods I had been eating and craving were the correct ones issue is I am not eating calories due to my stomach issues.  The other issue is financial I can't afford the food I need to be eating which is basically organic and I can't really hunt/fish for what I need.  I can't eat processed food, though I do breakdown once and a while for the first time in 4 months I had a biscuit from Chick Fila.  Normally I get them from a country kitchen that cooks them fresh from local food sources.  When money is tight though I have no choice but to eat processed which is normal only personal frozen pizzas or egg rolls from the Dollar Tree.  One month we ran out of money and for like 4 days that is what are food options, which happened cause I had to pay for insurance and vet for my best bud my kitty cat RileyCoyote.

Thursday, December 17, 2015

Restasis, Fibro, Sodium and Potassium...oh my...

Frustrating I get up to do something five steps later I have forgotten why I was about to do..ugh… We have just gotten my medications to a point where daily life is more bearable but if one drug is not taken or held up by insurance it can cause a ripple effect that will through the body into chaos.
A couple of months ago I ran out of plaquenil and forgot to refill it, pain ran rampant it, pain widespread, swollen joints, swollen glands, extreme light sensitivity, inability to sleep, etc.   Just last month I ran out of Restasis which resulted in the same effects as above, but added in eye pain, itching, headaches from light, etc.   

Apparently if the order is put in by my Oncologist it get approved but if my eye doctor put it in paperwork has to be filled out.  Seriously it has been already filled out once and it was clearly documented that I am allergic to over the counter eye drops, and I can only take preservative free which doesn’t help the eyes I literally would have to use the drops every hour.  

During this time I had multiple eye infections, sever e light sensitivity, itching scratch corona, etc.   I have had plugs put that didn’t help at all with my eye pain it actually scratched my corona.  I have had my tear ducts cauterized 4 times and guess what if the doctors hadn’t done it themselves and had it not been on my medical chart they would Swear I never had it done.  My eyes show no scarring or evidence it was ever cauterized, so that option is off the table.  The only option to give me some relief for my eyes is Restasis    

After 3 emails using the my chart link, 2 missed calls from my eye doctor (thankful she emailed me back as well) and someone at the insurance company that actually processed paperwork even though it was 450 pm when the paperwork was received.   Then I called my Pharmacy and I should have know it was the idiot girl that always screws up my prescriptions that tells me ok I will check again like I said 2 hours ago it has changed check with us tomorrow.  Hmmm...yeah so 2 minutes later I refresh the pharmacy website that updates where in the process your drug was and it had gone from insurance hold, to checking for allergies and quickly to preparing.   An hour later it was ready and dumb dumb was working at the window and anytime she works it takes for every for each person to get waited on, like 10 to 15 minutes per patient on her bad days which she has a lot of, luckily the Pharmacist had time as the other tech was working the drive thru.  

I have found like others I have met that crafting or any kind of hobby helps to keep the mind off the pain.  I recently read an article about one of the lady’s I meet on facebook who has the same hobby myself (Making Barbie Dioramas/Miniature Rooms) that working on them helped keep her mind of the pain caused  by Fibromaylaga..  Fibro happens to be one of many disease I have been fighting since 2008,  one of the major one’s I actually had prior to 2008 Sjogrens.


And sadly it seems my taste buds are going bye bye, food no longer tastes the same everything is bland.  #sjogren’s sucks.  In other news not really looking forward to my dermatology appointment cause if my Oncologist was concerned about the spots all over,  I can only imagine what other skin disorders she is going to dx with me I already have psoriasis, contact dermatitis, and like 3 others.   I am allergic to water, anything that has additives or perfumes, preservatives, plastic, latex, etc. 

Right now I am researching to find other ways other than medicine to help alleviate some of effects of Sjogren's, the side effects from the chemo & surgeries and side effects from the medication.  I am 99.9% sure one of the issues is mineral deficiency since my vitamin D is always low even with taking Vit D pills, and during chemo, actually really before and after chemo I have craved Potatoes.  Logic tells me I may have low potassium and sodium that and my blood work always shows my sodium and the low end or below acceptable levels.  To be honest everything ever tested is always at the low end or below and sometimes well bellow.  

Up next......Why do I not sweat and issues it causes with my Raynauds.....