Day +25

Not much new to report today. Brad seemed a bit more comfortable after a difficult night last night. He is very sleepy and continues to get more and better rest during the day, but his vision remains impaired (both by the eye problems and by their treatment—the fact that his eyes tend to be full of ointments can’t be helping him see). He’s not really able to use his eyes much, but I increased the size of of all the displays on his phone and other devices and that seems to be helping him use them. Though, honestly, he’s too fatigued to concentrate on much of anything.

Much of today was spent waiting for the eye doctors to show up, and as of this writing (5pm on a Friday), they haven’t. They are planning to do a procedure on his eyes daily to prevent long-term damage; I wasn’t here for it yesterday but I gather it involved scraping the eye surface and was pretty painful. Today, he’s been instructed to ask for pain meds first so he doesn’t have to suffer needlessly. There’s been some discussion of a bigger procedure down the line to fix any corneal damage, but it would need to be done in the OR, so it’s not on the cards until he’s much improved and not so immune suppressed. Anyway, questions about the eyes remain, but we’ve been promised that the big boss of the corneal specialists (who knew there were so many layers of eye specialists?) will come tomorrow. More then.

Day +24

Brad is feeling a bit more comfortable today, as some of the new meds from yesterday seem to be helping. He’s also getting a lot more rest than he had been. (I’m writing this in his hospital room as he sleeps.) One new development is that he has been needing insulin shots, as his blood sugars are spiking. I asked the nurse about this, thinking it might be because the TPN is so high in sugar. But it’s not that; instead, it’s a common side effect of the steroids he is on. One more medication, one more set of side effects to control.

I’ve noticed particularly, during this whole thing, how quickly the cascade of interventions and medications builds during such a highly technical, complex procedure as the one he’s been undergoing. One symptom demands a medication, but that medication produces new side effects, which require other interventions and medications to control. It’s all a lot for his poor overtaxed—and now very weak—body. But the alternative, as they say about aging, is a lot worse.

His eyes are about the same as yesterday, and he’s having trouble opening them despite a triple threat of drops and ointments (steroid drops, erythromycin ointment, and artificial tears). And when the eyes are open, he’s having a bit of trouble seeing out of them. The ophthalmologist did seem to feel that the problems are due to ocular GVHD, which is a rarer type of GVHD—more commonly, eye problems show up much later post-transplant and tend to be more along the lines of dry eyes. (There’s a clinical distinction drawn between “acute” GVHD—severe problems that show up within 100 days of transplant—and “chronic” GVHD, which are ongoing, typically less serious complications that emerge post-100 days.) The ophthalmologist who consulted on the case also noted some problem areas on his cornea, and now we are waiting for the corneal specialists to come and take a look at that.

In better news, not only have I learned how to spell ophthalmologist, but also earlier today Brad asked me to read to him, so I read aloud a bit from Ulysses, the Eumaeus episode in which Bloom and a drunk Stephen Dedalus meet an equally drunken sailor. I opened Brad’s Kindle to it at random, but the rambling (not to say shambling) style of the narrative, which mimics drunken conversations, seems like a particularly good fit for someone whose pain meds have him drifting in and out of consciousness and understanding. James Joyce’s rendition of drunken speech even managed to get a few chuckles out of Brad, which seemed to me like a good sign.

On a random note that is not a sign of anything, I just noticed that now that it is February, the days are aligned with the dates: Day +24=2/4. So, there’s that. Surely Joyce would have made some play with that coincidence.

Day +23

Well, it’s February 3, a month from the day of Brad’s admission. Today he said that he feels the worst he’s felt to date, which is frustrating and hard to see. His gastrointestinal GVHD continues to be tremendously miserable, and the steroid treatment is not controlling it well. Thus, the doctors are stepping up the medication yet again, adding a new IV antidiarrheal medication—and if this one doesn’t work, they say the next step is tincture of opium. If that happens, expect a lot of quotes from “Kubla Khan” to grace the blog. Most unfortunately, he also has contracted conjunctivitis (pinkeye) and yesterday could barely open his eyes. The jury is still out on what might be causing the inflammatory response (there’s some thought it might be rare GVHD of the eyes, and the medical team is bringing in ophthalmology specialists), but they are treating every possibility with a big range of topical eye drops and ointments.

All that should treat his symptoms, but to treat the GVHD on a more macro level, his doctors have added a second type of immune suppressant to the tacrolimus Brad already gets. This aspect of his regimen has prompted a lot of questions from people, and it does seem counterintuitive. After all, the whole point of the transplant was to give him a new immune system, right? Why would they want to suppress it? The suppressing medications are to keep acute (and later chronic) GVHD at bay—to keep the new immune system from taking off too fast, attacking Brad (the host) and making him precisely as miserable as he’s been for the last several days. While the GVHD has been treated with steroids, they have been given a fair chance to work and so far they are not helping, so it’s time to take the immune system down a further notch or two.

Dr. R said today that what all this means for the long haul is that, given the severity of Brad’s GVHD thus far, he will likely need to be on more immune suppressants longer than some other transplant patients. He’s likely to be immune suppressed, then, for most of this calendar year. That means a special diet, no restaurants, no crowded public places, and so on. If all goes well, we hope this robust GVHD response will also mean a robust graft vs. tumor response, with the new immune system fighting the cancer as efficiently as it is currently fighting Brad’s gut.

Day +21

A quick late-night update today. The news today was that the nutritionist and Brad’s medical team have put him back on TPN (IV nutrition), as he wasn’t able to take in nearly enough calories by eating, despite valiant efforts. Unfortunately, the main food that was holding appeal for him was broth, which has very little caloric impact. He pointed out to his doctor that he’s at a reasonable weight for his height—but she countered that his body weight doesn’t really matter at this point; it’s more that he needs calories and especially protein intake to support his recovery and maintain his muscle mass.

Although Brad seemed disappointed to go back on TPN (I suspect it felt like a step backward for him), I am frankly relieved to know he will be getting more nutrition, and I’m hopeful it will give him a bit more energy in the days ahead. When I was at the hospital this morning, it was a challenge for him to walk in the halls—but, in keeping with his usual inspiring attitude and determination, he did it. He can continue to eat (as he feels able) while on the TPN, so we are very hopeful his time on it will be short but that it will speed his recovery. Happily, the steroids seem to be working and his gastrointestinal GVHD symptoms were abating somewhat today.

A quick note: I probably won’t be available to post tomorrow (planning to be out of internet range most of the day) and I’m not sure if Brad will be up to it. Regular readers, do not be alarmed if you don’t see anything new tomorrow. Happy Groundhog Day, one and all.