GVHD Sucks. Let me say that again, just in case you missed it: GVHD Sucks. Once more: GVHD in small doses is a good thing. WHAT???
First of all I cannot believe that it has been a long time since I posted, but for the past several weeks things have not been so good. The back pain disappeared, and I got back to regular workouts and started to get strong again. Working especially on my lower body to get my legs strong… heck, I even started to drive again… short jaunts… it felt good.
So what is GVHD? Graft vs. Host Disease: Where my cells are attacking the grafted (My sister’s) cells. A little bit is ok, because it keeps the grafted cells active and looking in lotsa places for the cancer that remains. We had gotten to a point where there were a couple of spots that Dr. T wanted a little more activity and adjusted meds to do that. It’s a very fine line of adjustment and it caused a problem: THE “D” came back!
I felt awful and did two stints at MD Anderson in Orlando trying to stop it, but it would come back. Frustrating at the very least, demoralizing, and a real chink in the armor. I couldn’t work out, slept until the urge (every 15 min!!!).
Then yesterday, I showed up here at Moffitt Cancer center in Tampa for a bone marrow biopsy, visit with Dr. T. and a PET scan. It would be a long day and Mike Callinan (neighbor and good friend) had a big book. When I went in for the biopsy, my blood pressure was much too low. I mean really, really low. I didn’t know those machines could go that low and I thought I was going to die. No biopsy and Dr. T admitted me to the transplant floor, got IV’s going, etc. etc.
I haven’t been able to eat anything while they sort things out, but I was allowed some Jell-O and that just slid through like it was on a rocket sled. So back to sips of water. Bone marrow biopsy tomorrow AM, so nothing after midnight. BP is up, so no issues there. I had a scope job done this morning (both ends), with biopsy’s taken. We’ll see if they provide any indications of what went so wrong. In the meantime, they're "feeding" me with a couple of bags of really disgusting looking stuff... protein, minerals, vitamins and even a bag of "fat" (although I'm sure it's not the real stuff).
Wedding plans are moving along swimmingly, I just want to walk down the aisle with my little girl and dance with her (and not step on her dress). She and Sean are doing all of the heavy lifting and Ruth Ann and I are helping where we can (I’m tracking the responses). Then we have BBAWP… Becky’s Bad Ass Wedding Planners… our wonderful neighbors, who have stepped up, adopted Becky as their own and are in the wings when the time comes for help.
I’m comfortable in this place… the people are very capable and the transplant thing is every day. Dr. Tomblyn is the best at what she does (please, no offense to Dr. Sarriera). We will fix this, and I’ll be back to eating fresh pesto in no time. Maybe some chicken cutlet Milanese on the side and a slice of cold apizza for breakfast! I know this, too, will pass. I just hope it ends soon.
*hugs*
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