Dreaming of reading

I missed posting yesterday; I took Lucy on a snow day up to go sledding in the deep snow up Highway 50, and by the time I got back not only was it too late to go see Brad for the day but I was also beat. We had fun sliding, though, and it was an absolutely beautiful day up in the mountains—despite the deep snow, it was actually too warm for a jacket. Anyway, it was nice to get out in some nature for a little while.

Now that I’m back as regularly scheduled, I thought I’d give a little state of the nation overview for anyone who might not have checked in for a while or for those who are getting lost in the small ups and downs of daily reports on Brad’s condition. It’s currently Day +28, four weeks to the day after his transplant and just over five weeks since he was admitted to the hospital. The new stem cells have engrafted, meaning that he is now a chimera (in keeping with the title of the blog)—that is, he now has two kinds of DNA. We don’t know for sure whether he is fully chimerized, whether any of his former immune system remains, but his white blood counts are so high the nurses have stopped bothering to track them on his in-room chart—which, in any case, only goes up to Day +26. So Brad is now, I guess, officially off the charts. (And I’ve decided to drop the numbered-by-day post titles, because honestly it’s bumming me out to see the daily numbers go so high with no hint he may be able to get home soon.)

His counts are in fact above normal, as an expected side effect of the steroid medications he is on to treat his GVHD (graft vs. host disease). This is, for those just checking in, a complication caused by the new immune system (the graft) attacking its new home (the host, meaning Brad). Brad has had skin rashes (the first signs of GVHD he got), mild liver GVHD (indicated by high liver enzymes, which are now coming back down), severe gastrointestinal GVHD (continuing but slightly less severe than it was), and ocular GVHD (also continuing and being treated, on which more below).

As a result of all this, plus the fact that he’s on a very powerful cocktail of medications (among them: two immune suppressants, high doses of steroids, a powerful antibiotic, prophylactic antifungal and antiviral meds, and painkillers), he is very fatigued and he’s been dozing and spending a lot of time in bed. Yesterday Brad’s new attending physician, Dr. A, gave Brad a pep talk about being up and walking more. He needs to be more active to build his strength back up and maintain what he hasn’t lost. So, he took a couple of walks across the room and today while I was at the hospital he managed a short walk in the hallway. This is now permitted because his counts are so high, but it was a big challenge for him to walk a short distance. Still, he did it, and it’s great to see his customary determination returning.

We’re hopeful that some of these small gains. Since his skin rashes are looking distinctly better, his nurse says that holds out hope that other GVHD symptoms will also fall into line, improving and helping him feel better. His gut symptoms remain but are slightly lessened. He’s not eating at all, and the medical team says it’s for the best that he have complete “bowel rest,” as they call it; the IV nutrition is covering him just fine and his weight has stabilized. Brad’s eyes seem to be somewhat less painful and while his vision is still not great, the proposed treatment of amniotic-membrane contact lenses, Prokera, is a go. He’s been measured and fitted for those and they should arrive tomorrow; apparently putting them in is a short, easy bedside procedure. He may still need a more permanent intervention down the road but that’s a decision for another day, and we are all relieved at the assurances that his vision will not be permanently compromised.

In other news, today he was also switched back from IV pain meds administered by the nurses to a PCA, the patient-controlled pain med delivery system. I had asked about this possibility (especially given his eye pain) a couple of days ago but was told they didn’t want to go back to it. But his primary nurse today told me she is concerned about how sleepy Brad is most of the time and that having patient-administered pain meds will give him a more constant pain control with less of a big dosage hit up front. The hope is that it will lessen his dozing—and perhaps also help with some hallucinations and confusion he’s been having. The other day he woke up saying that he was filming a PSA advertisement in Hollywood. This morning, his nurse told me, he woke up convinced he was reading, something he’s not been able to do at all given his eyes and his profound fatigue.

Anyone who knows Brad knows that reading is at the very core of his life, and I couldn’t help crying a little when I heard that he’d been dreaming of doing so. A few days ago, he actually asked me to take home most of the (many) books in his room, though he still has his Kindle. The last two days he hasn’t even really been up for reading aloud, though as he starts to feel better and more alert I hope we’ll return to that.  Truth be told, though my reasons are different I haven’t been reading much at all lately either; I can’t concentrate on anything much more challenging than a magazine article. I did pick up a battered paperback of a British murder mystery from among the motley assortment of donated books in the cancer ward family visiting room, so I’m attempting that in the quiet hours in the hospital room. (It was a tough call between that, an outdated oncology textbook, a Family Circle diet book from the 1970s, the meditations of Marcus Aurelius, and several Nora Roberts volumes, but I feel confident I made the right choice.) It might be a long time before either of us get back to our usual more avid reading habits, but surely eventually we will.

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4 thoughts on “Dreaming of reading

  1. Kate, You are amazing. It’s heartbreaking to read these posts about Brad’s pain and discomfort and yet you remain so clear headed. I hope Brad will take a wild swing in a direction that includes a remarkable speedy recovery from these side effects. My thoughts and prayers are with you all.

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