Insights on coping with my journey with chronic disease

Once again it’s been a while since my last post on this blog.  It wasn’t intentional.  My disease simply would not allow me the good moments that I needed to write.  I could post to Facebook and do a few other simple tasks, but the pain, overwhelming fatigue and everyday weakness would not let me do what I truly wanted to do.

Many of you know that I’ve been battling cancer and a chronic disorder that was triggered by the cancer.  Its symptoms are much like chronic fatigue (systemic exercise intolerance disease) on steroids plus fibromyalgia and a bunch of connective tissue disorders thrown on top for good measure.  I have also had a number of other comorbidities that come with chronic disease like pneumonia, pulmonary emboli, heart attacks and recurring infections.

While I accepted the fact a long time ago that I would not get better, I haven’t give up on trying to make things as good as possible.  There is not much treatment that is effective.  I’ve taken high dose steroids, Cytoxan and IVIG.  Sometimes more than one at a time.  None of these drugs is a happy time.  The steroids make you fat and crazy.  The Cytoxan is poison that slowly kills you in other ways.  And, the IVIG caused a heart attack (100% blockage of the LAD) and a stroke, well actually a retinal artery occlusion but close enough.  I lost about one third of the field of vision in my right eye, in the lower left quadrant – right where you need it most.

This week I had two doctor appointments.  The first one was with my oncologist.  Nothing new to report – no new cancer.  However, I am lucky that he really sympathizes with my condition.  He expressed regret that the cancer caused something that is so rare and so hard to treat.  He even offered to try and treat the Melanoma cells that might be lingering in my body with the new drugs if I could find that it had been done somewhere else in the world.

The second appointment was with my neurologist.  This appointment was to try and do some treatment planning since the IVIG was such a failure and also because my symptoms were getting so much worse.  There wasn’t a lot he could offer.   He told me that he thought that my best chance at improving my quality of life was to go back to Cytoxan.  He felt the negative effects were likely longer term than the progression of the disease that I had so that the risk was worth taking.  While not anxious to go back to this poison,  I agreed with his treatment plan and will shortly go back to oral Cytoxan.  The IV Cytoxan is a little less risky but it made me so sick that I did not want to experience that feeling again.  I could tolerate the oral Cytoxan a little better.  And, I had to admit that I was a lot more stable over the two years I had taken it.   I did think though that my symptoms continued to progress even while taking Cytoxan.  But, I suppose slowing them down is better than doing nothing.

I came home depressed.  I could feel the darkness coming over me like a giant anaconda slithering around the body of its prey getting ready to constrict its muscles and crush it to death.  When I feel this way,  I have to do something.  That’s why I made myself get up and start writing.  It keeps me busy and I find that if I can stay busy, I am able to fight off the darkness.  Last night, I knew I needed to get to sleep as fast as I could so I self-medicated with some premium whiskey.  Luckily, it was just the right amount so that I did indeed go to sleep without too much disruption later in the night.  If you drink too much, it will really cause problems for you in the middle of the night.

Anyway, I feel better this morning.  My granddaughter came for a visit and that’s never a bad thing.  And, I’m writing.  May not be at my best, but I’m being active.  I have also posted several items to Facebook.  All of this helps me to start to deal with the reality of this “new” treatment plan.  It won’t be easy and it won’t take just a day or two to get over the anxiety and adjust.  I know that I have to be wary of the horrible darkness and take preventive steps to keep it as far away as I can.

And I need to be hopeful that although not the answer I was seeking, this might be best for my quality of life.  After all, I have a lot of living to do.  I am not done yet.

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About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome. Now in a fight with terminal treatment resistant Stage IV Prostate Cancer.
This entry was posted in About Melanoma, Chronic Pain and Chronic Illness, Cytoxan Therapy, IVIG and tagged , , , , , , , , , , , , , . Bookmark the permalink.

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