14 years NED!!!!

Sorry I have been away a bit from 2017 to 2019 had to get a lawyer from Social Security Disability.  The judge basically laughed after reviewing the 100,000 plus medical records that spanned from 2014-2019.  She thought it was a no brainer and should have been approved the first time.  

It was a very stressful and depressing period, then after approval and back pay I was able to get surgeries and appointments that had been on hold.  Was able to get 2 surgeries done than the damn PANDEMIC.   

Due to fact I take an immunosuppressant for my auto-immune disorder aka Sjogren's I was regulated to my bedroom.  Why?  My sister was considered a front line worker since she works in a Big Box Store.

It has been 16 years since I was dx and I 14 years NED.  Cancer under control but that is definitely not the case with my Sjogren's

I have had to make changes in my diet to prevent diabetes, which has helped to greatly decrease my weight which had gone up during the pandemic.  Big reason I would get my exercise walking Walmart at night but not any more since they are no longer 24 hours. 

My goal an ambitus one back to high school weight. 

Switch in Medicine Fails (2017)

It has been literally and figuratively nerve racking the last month and half. My Rheumatologist had switched my nerve drug from Gabapentin too Lycria to see if that drug would help with all issues including the fibromyalgia that the Gabapentin didn't seem to help.
Well that experiment ended with a nuclear mushroom cloud my body felt like I was a UFC cage fighter that lost all the time. I am already hyper-active which has been good and bad when it comes to dealing with my Sjogren's and side effects from cancer treatment.

I finally got a hold of my Rheumatologist and finally got my nerve medicine switched back, seriously freaking Lycria and me do not get along. A month and half with no sleep and a brain that wouldn't shut down wasn't easy. I can already tell the difference.

Anxiety looms will the long dance with NED continue? (from 2017 forgot to Publish)

October 2009 my scan showed no cancer it was almost a year from my first NED scan and 2 years from when the lump was found.   I was given a break from the Chemo which I was told wouldn't last long that was something like 8 years ago.  Some believe some how I've been cured but with my families sordid affair with breast and ovarian cancer I know that my "times up card" could happen at any second. 

There are times you wished your family way back in the day had left eastern north Carolina to the far reaches of the United States.  The rip van winkle state.

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 2^nd scan.  The scan showed a nodule in my left main Bronchus which was flagged in my 1^st 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 2^nd 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.  

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.

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 .

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 30^th 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.