Day 98

Today Vlad and I attended the Survivorship Class. It was grounding to say the least. And profound for me. The teacher, Karen Stolar, an amazingly capable advanced-practice nurse, distilled the essence of what is our new normal for the next couple of years in 2.5 hours of analogies, Hints from Heloise and a bunch of frightening factoids that she made palatable with her cool kaffeeklatsch style.

The dangers of GvHD (Graft vs. Host Disease) -- which is when the donor-blood's immune system goes berserk in response to an injury, like a sunburn -- are breath-taking. Prevention is living a healthy lifestyle. For instance, Vlad must never again go in the sun without SPF 50 sunblock. For the rest of his life. A burn could lead to GvHD of the skin.

GvHD can hit any part of the body, just like cancer. It can show up in your mouth. Turn up on your legs. If you catch it early, it will likely be a minor inconvenience to fix it. If you let it go, it will develop into a monster problem. So vigilance is key.

There are lots of limitations. While he is taking the tacrolimus (Prograf), an immunosuppressive drug to help keep GvHD at bay, he keeps many food limitations. Plus no drinking. No sushi. He shouldn't go to crowded places without a mask, work in the garden or swim anywhere. No work yet, probably not till at least 6 months, which is June 15. His tacrolimus dosage will be evaluated around 6 months. He could come off it then, or not.

And there are new concerns. He's much more likely to contract skin cancer and heart disease. Osteoporosis is another one.

Still, as Karen said, he's lucky. There are tens of thousands of people who need stem cell transplants who have no donors and never get the live-saving treatment. So all the limitations are small potatoes in the scheme of things. And please think about becoming a donor. There were only two donors in the entire bank that matched him. If those two hadn't donated, I don't know where we'd be.

Anyway, we realized we had gotten way ahead of ourselves. He's doing really well -- for a transplant patient. He's still nowhere near normal. He still needs a lot of attention that I haven't been giving as much lately. Maybe I want him to be well; I will it and pretend. But he's very much in the thick of it.

So we were talking later today and decided our idea to do a cruise was a very bad one. We wanted to go to New York, but that's no good. Now we're thinking of renting a cabin somewhere on a river or a lake where Vlad can fish and I can watch birds and read. Maybe in the Hill Country. If you know of a place, give us a shout.

Odds and ends: Vlad had his "Day 100" biopsy Monday (Actually Day 97). Results to trickle in starting Monday March 29. We're looking for results to say he has close to 100% donor blood ... He did another sleep study and they found his oxygen during sleep dropped to 50%, which is really bad, so he has a new C-PAP machine coming. We hope this will help his fatigue as well. .... He still takes the magnesium, which is very unpleasant. Tacrolimus depletes the body's magnesium levels. ... I learned something interesting at class today: The body never gets rid of the iron we ingest: unless we bleed.