Friday, September 13, 2013

Grief and Side-effects

4th Chemotherapy Treatment
July 8, 2013
I have really been down lately.  Today is no exception.  I tried to keep my emotions in check as I spoke with my oncologist about possible radiation treatments to reduce the biggest tumors especially the one in the mediastinal space between my lungs.  My logic was that if you reduce the bigger ones or get rid of them completely, then my life would be extended even longer because the smaller ones are less damaging to the organs.  There also would be less cancer cells to spread as well.  Dr. R. said studies showed that life is not extended when this has been done.  While I can appreciate all the knowledge that is gained from studies, it does not mean that all cancers that are like mine act the same.  From what I have read, no one understands why some treatments work on one cancer, but do not work on what seems to be an identical cancer.   I want this disease to be gone so badly, and she was telling me there was nothing that could be done.  This was such a hard thing to hear and accept.  I know I was not taking into account that the smaller tumors can lose cells into the lymphatic system or into the blood just like the bigger tumors leaving the cancer to continue to wreak its havoc on me.   Numerous small tumors would then be just as bad as a few big ones.  But, I still see the logic to my argument.  Somehow it seems I will be thinking about this again at some point.  I still have a lot to learn.  

We also talked about when she would consider using radiation.  She said it would only be used if one of the tumors was causing pain or was interfering with my ability to function.  Any radiation to head or neck produces bad side effects so that is not done to that area unless absolutely necessary. 

Next we talked about the HER 2 neu vaccine that I had read about on-line.  The vaccine is supposed to help the immune system recognize the cancer cells.  My oncologist said the vaccine has only been in the early stages of clinical trials.  These trials are looking for what dosage is best to give, how long, and how often.  It has not gone to the bigger clinical trials to actually see any successful results of defeating this cancer.  So I may never see this vaccine come out on the market and be given to me.

Right now, I don’t feel sick at all except from the Taxotere, Herceptin, and the Perjeta.  There are moments in time where I feel so great that I don’t feel as if anything is wrong at all, and it gives me hope that the treatments are working.  The past couple of weeks though, before today, I did not feel so great.  Before and after the first chemo I could feel a pinching sensation in my neck right in the area where I found the dreaded enlarged lymph node.  Then just after the second treatment, I stopped feeling it.  Well, for some reason it is back.  This is probably what is making me so sad because it feels like the treatments might not be working.  I sure need a boost mentally.  Good scan results would do that for me.   Looking further down the line, I know I will run out of treatment options.  It pained me terribly when I read a quote on a blog from a girl I went to high school with, Angie.  She died May 8, 2013 from breast cancer.  One of her posts on her “Caring Bridge” blog said she just didn’t want to think about it (her cancer) after one of her scans.  It was bad at that point.  I was newly diagnosed when I read that, so it was particularly hard to read.  We all need a switch that turns off our brain from remembering our circumstances.  Ativan stops the tears, but you don’t forget.  It makes you not care about taking care of things that need to be done. Dishes not washed, who cares?  Dogs not fed, who cares?  Maybe that is an exaggeration, but I remember when I would take it, all I wanted to do was sit and watch TV.  Sure I got up and did a few things, but the urgency to get them done was gone.  I may not have a lot of time to just sit.  Time is so vital, so I quit taking the Ativan and cry when I need too. 

Good grief, I feel tears coming now.  I just don’t want to leave my kids.  At least my older children have a good idea of what I value, what kind of person I am, and what I believe about the world.  It makes me so sad that my youngest is only 10.  We have only barely touched on the subjects of religion, politics, and why people might believe in things or behave in ways that we don’t.  Those long, deep conversations only come with age and maturity.   It is important to me to talk to my children about what they hear people say in casual conversations, on the radio, television or read in books.  I so want to have those conversations with her on our long commute to and from town.

The Dreaded Side effects:
The side effects can bring my mood down, but I will take these over cancer growth any day.    
 Lympheodema:  My lympheodema in my hand has worsened.  It looks like it did 2 years ago.  Thankfully  it is not as bad as it was 3 1/2 years ago when two more lymph nodes were removed under my arm causing my arm and hand to swell.   Before now, the swelling had subsided considerably, and I could even see the veins on the back of my hand.  With chemo, I am faced again with needing to wear my compression glove more often and it is really a pain when so much cleaning deals with water. 
My Head:  My head has several skin infections that have started to appear into the 2nd week after my infusions.   I am having the hardest time getting rid of them.  These are on the crown of my head with a few on the sides and back.  By the time the following treatment is about to occur, they heal and then the cycle continues.
Fingernails:  I can see the little white lines on my fingernails that are the result of treatment.  I had forgotten about those lines from my 6 rounds of chemo in 2010. 
Mouth Ulcer:  I still have that nuisance ulcer that keeps trying to fester on the side of my mouth.  The salt and water rinsing that I have been doing with me letting the solution drip unto the ulcer as I spit the fluid out seems to have helped.  The first breakout was horrible.
Diarrhea:  My diarrhea has been every day.  I guess I need to take more Imodium.  But at least it is coming out.  With IBS (irritable bowel syndrome), sometimes the cramping is unbearable mostly because nothing wants to come out.  I am so thankful to have the right IBS medicine now.
Tired:  First weekend after my infusion is always the worst.

My Husband
I wish my husband would talk to me more or at least let me know he sympathizes with my situation.  At the very least I wish he would say he is sorry when he says something that completely leaves me in tears.  Then he has to ask, did I do something to upset you?  At that point I have so many emotions swirling around my mind that I can’t pin point the one comment that started my tears.  I am sure that leaves him confused as well, but I still wish he would make an effort to try to figure out the breaking point. Whatever is said leaves me feeling down, unhappy and alone.  I am not the easiest person to live with it is true especially when my life is so out of control.  More than not, I am sure I am super sensitive to anything that might remind me of how helpless I am.  If you don’t have your health, all the other aspects of your life become so difficult.      

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