Well, I was wrong about needing a platelet infusion this week, my platelets were at 24. This means next Thursday they will be low enough for an infusion that will carry me to and thru Mayo Clinic on the 30th. It’s all good, Dr. Shin knows I am getting infusions when I need them. It’s also, not like every time I need an infusion I am gonna run up to Mayo to get it. Dr. Shin and the team up at Mayo will have to work with Dr. Wehbe down here. Dr. Wehbe has already agreed to do whatever is asked by Mayo, and I am sure that is gonna be keep me alive between chemo runs.
I spent a good portion of yesterday trying to find a review of the hospital food at Mayo. I can find tons of info saying they have food (duh) but seems that no one cared enough to say if their patient food is good or bad or just exists. I’m gonna guess that it’s ok cuz Mayo is #1 in the nation and patient satisfaction is a big key in the rankings and the food is definitely a part of patient satisfaction.
I brushed a hot grill in the oven with 2 of my fingers on Monday, they blistered later that day, the popped overnight, and they have hurt continually during this whole process. I don’t think they are infected, but they are inflamed, puffy and red around where the blisters popped. Very painful, I will endeavor to never brush up against a 450 degree hot grill again.
I still don’t know how I am feeling about this whole transplant thing. I still believe that I should be feeling something… Maybe I will when it becomes more real. Still about two weeks away from talking to the transplant team, then maybe it will spark am emotion or two about it.
I still can’t believe (or don’t want to believe) that I am willingly gonna go thru chemo treatment again. I do not have any details on how long it will take or anything. But from what I have been told by someone who just went thru a bone marrow/stem cell transplant at Mayo, that it’s a couple months of chemo followed by radiation… totally killing my bone marrow so the new bone marrow has a place to be. That seems really cool to me. Supposedly, I will be conscious and able to watch the new stem cells being pumped in. Looking forward to seeing that.
I am feeling pretty rotten about having to cancel my D&D game and leave the Friday night D&D game. Everyone has been cool about it. But dang it, I was having fun and so was everyone else. We had just gotten started on both games really, and now I had to bail on them.
Tonight is Acute Leukemia chat. I hope that a few of the regulars are there. I want to let them all know what is going on. They have been great support thru all this MDS bull crap, and they will be really supportive now that I am going for a transplant. I wonder if I can still say I didn’t get a transplant cuz of leukemia? I mean, I got the MDS because of the leukemia, but I am getting the transplant cuz of the MDS. In reality, according to Dr. Shin, I should have had the transplant during leukemia in all likelihood.
Well, I know with the medical crap going on, our cruise is put on indefinite hold. All the money that we had set aside for a vacation will be going to medical care. Sucks, but that’s the reality.
I figure I am going to be in the hospital for my wife’s birthday and our 25th anniversary. That truly sucks. I wanted to do something really nice for her and instead she will be sitting next to me in the hospital. Man, the timing of this sucks. I wonder if I can put off the transplant until after April 2nd? I’m serious, they can keep me alive indefinitely with timely platelet transfusions. Can we put off the whole thing until after her birthday on April 1 and our anniversary on April 2? I’ll run it by Teresa and then if she thinks it’s doable, I will run it by the transplant team and Dr. Shin.
I’m glad my meds keep me happily mellow, cuz otherwise I’d probably be falling apart.