Sunday, October 16, 2011

Day + 192 UGH!

Boy, I thought I would be home and in and amongst my stuff by now… it’s two weeks tomorrow that I’ve been here at Moffitt Cancer Center in Tampa. It’s a crunch with Ruth Ann working and Becky and Sean, too. Ruth Ann came on Friday and left today. The bed here is really not very comfortable and the facilities are limited. She had to get home to get stuff done for the shower next Sunday (I just hope I can make it!!). And there are still some wedding details to attend to (small surprise).

I’m being fed a combination of a cocktail of all kinds of stuff (including proteins and lipids and all kinds of vitamins and minerals and DRUGS, supplemented with what I can eat (low sodium, lactose free, immune suppressed… do the math). Getting everything under control has been a challenge for the Doc’s here and we’re hoping to get this under control soon.

I guess I should have expected that not all was going to be as hunky-dory as I wanted. I was in a good place: I was exercising, walking, making myself useful as a house-husband, including cooking. I had even started to drive short jaunts to local places… feeling my oats again, so to speak. So, I’m in a 1 month (so far) setback that really grates on me. Those of you that know me, know that I’m a type “A”, and this is killing me. Not being in the woodshop is one thing, but being saddled with this is awful.

Dr. T. was brutally honest with me when we went through this and she described some very nasty stuff (including death) that could happen with GVHD. For that I thank her… this is far less that the other solution and maybe I should buck up and hope they find a remedy… but SOON!

Keep the prayers coming… I know they work.

il Duca

Tuesday, October 4, 2011

GVHD Sucks or does it?

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.