Lazy Summer

So it's been a while.  A lot has happened since my last post and yet not much has changed.  My Day 100 work-up in June went well - all my tests came back with favorable results.    Around that time my GVH flared again and has been trouble ever since.  Since I am post-Day 100, the GVH is now classified as chronic instead of acute, which doesn't mean much except for how it is treated.  At the end of June I began eight weekly infusions of 1200mg of Prednisone (steroids) in an effort to suppress my immune system (in addition to the 30mg I take daily).  Being on that much Prednisone is awful.  I would get my infusions on Tuesdays and for the next three days I could hardly sleep.  I would be restless, irritable, and have dramatic mood swings.  It has made my skin so fragile any bump or scratch produces a sore or blister that takes weeks to heal.  It causes me to retain water and made me chubby.  I've gained about 40 pounds since I started the eight infusions, I can't wear shoes because my feet don't fit inside, and my face is so round people don't recognize me.

The worst part of it is that it didn't work.  Last Tuesday was my last infusion and by that time all my symptoms should have resolved.  Yet today I still have GVH sores in my mouth, my hands and neck are red, and my eyes are constantly dry (a new symptom with chronic GVH).  Dr. Oran is concerned because of my lack of a response to treatment - such an intense steroid treatment typically does the trick but for me it hasn't.  We're going to wait at least a week to see how my body responds without the weekly pulses, but it looks probable that I'll require alternative immunosuppression to control my GVH.

It's disappointing.  The Prednisone was so hard on my body and the little relief I received was offset by the complications it brought.  I'm frustrated by how slowly I'm making progress.  Before having the transplant I had completely unrealistic ideas of where I would be at Day 100 or 6 months.  Even though my expectations of myself and my progress have been adjusted, it was a tough adjustment to make.  Day 100 was hard because I didn't feel as good as I hoped (expected) I would.  I was still fighting serious complications, which were common and normal and to be expected at Day 100, but I felt I should have been past that.  That my progress should be faster and I would breeze through recovery and return to my normal life in record time.  But that's not how it works, and that was a hard realization to come to.  And that's when I stopped writing my blog.

Now I've set more realistic goals.  People ask me how I feel, I don't say good.  I say alright, because honestly I have a lot of times when I feel like shit.  I have good times and can do a lot of what I like to do, but life is hard.  Recovery is hard.  It takes time.  And I've learned that I need patience.

Friday I have my six month biopsy and labs, then I'll meet with Dr. Oran again next Tuesday for the results.  I don't expect any surprises, but you never know until you know.  I'm not looking forward to the biopsy... ugh.