Allogeneic Stem Cell Transplant for the win!

I've been neglecting my poor blog for way too long at this point. The reason for that is that I spent a lot of time in the hospital, even during the one month that I was supposed to be at home recovering.  It's not unexpected to have to come in during that time, but I had to go in three times, and each time took nearly a week. The first time I mentioned in my last post.

The second time was my own stupid fault; I really wanted to hang out with the lab so I joined them for Korean barbeque.  I thought that since I was cooking the food myself, so it would be kosher for the neutropenic diet. The next day I was vomiting and I had a fever, so it was off to the hospital again.

Then the third and final time I had all of the symptoms of meningitis: light sensitivity, migraine, and a stiff neck.  Fortunately, I guess, it was not meningitis, but instead it was the leukemia making its way into my spinal cord and meninges. I say fortunately because apparently the total body irradiation that was already planned was the treatment for this, so we didn't have to go too far out of the way to treat it, and everything was handled in time so as to not cause any problems.  Unfortunately, this put me into the hospital several days before expected, and I would not have another chance to go home between then and the stem cell transplant.

Then the snow happened.  Everyone was freaking out about it --- understandably so, from what I could gather --- not the least of which was my brother Billy, the stem cell donor, who needed to be here at the hospital at 7 AM for four days straight to get the Neupogen injections that would sprout peripheral stem cells into his blood stream for collection on Friday, February 12th.  Due to the snow, Billy eventually just decided to spend that week up here in my room with me.  He was going out of his mind by the end of it; it's kind of a wonder that I've held up as well as I have now that I think of it.  Or maybe I only think I'm holding up well.

Anyway, while he was getting his Neupogen, I was actually preparing for the stem cell transplant. This involved getting a new super-duper chemo, getting three days of total body irradiation (TBI), and moving over to the bone marrow transplant wing of the hospital.  There's not much to say about the chemo; it was brutal for the few days that I felt it, mostly due to the terrible sore throat that made it difficult to eat and due to the raging diarrhea it evoked. The TBI was strange, and left me all tingly for days, but other than the discomfort from lying perfectly still on the table it really wasn't that bad (unless I've conflated the effects of the TBI with the chemo, which is entirely possible).

The hardest part by far has been the transition to the bone marrow transplant wing.  The room is much smaller, much harder to work in (since there's no place that could serve as a table), has meaner and less competent nurses, and has spotty wi-fi to boot.  The only thing it has going for it is a view that just reminds me how much I want to be elsewhere. Oh, and thanks to Tacrolimus, an anti-stem-cell-rejection drug, I'm now hooked up to an IV 24-7.

In any case, we survived the snow with only a minimum of grumbling from my family, for which I was thankful.  Then the transplant came and went --- it was really just like getting any other blood product, so at this point it was very anti-climactic even though the whole family was there (sans kids). Then the family left, and I was left with a reasonable amount of peace and quiet for the next few weeks.  I still get plenty of visitors from friends, family, and health care staff, but I generally have enough privacy to watch some DVDs, watch some streaming Netflix (when the Internet works), or play video games.

Since the transplant, things have gone pretty well.  As I mentioned, for a while the biggest problems were diarrhea and a sore spot in my throat.  Those are all but a memory now, but now the stem cells have engrafted into my bone marrow.  This is a good thing, and it's what we wanted to happen, but unfortunately it came with an acute case of graft-versus-host-disease (GVHD) in the form of a rash.  This might be a good thing though, since GVHD increases the likelihood that the cancer will be 100% cured.  In the meantime, they're treating the GVHD pretty well with steroids, so I think everything is actually going pretty well.

There was some talk of me getting out of here this weekend, but I think it's just talk.  Currently, all of the expensive drugs are taken care of through various patient assistance programs, though I'm waiting for the voriconazole to ship and to get confirmation on both eligibility and shipment of valcyte, which I think is a drug that will weaken my immune system (to help deal with GVHD).

Other than all of that, I'm currently in a holding pattern, playing "the old lady who swallowed a fly" with my medications.  I'm ready to get out of here, so here's hoping we can effect that some time soon.