It’s about time for a quick update on my medical situation, which I hope will be my last for a long while. I had been planning to have a second corneal transplant (in my right eye this time) in October, but some low white blood cell counts made that inadvisable; it would have been elective surgery, in any event, and my eye doctor felt it would be better to wait till my immune system was more robust, which probably pushes the earliest date for this procedure into 2018. More worrying was the fact that my white blood cell counts had been steadily declining for a few months, and thus my oncologist wanted to see if there was an obvious reason for that phenomenon. I therefore had yet another PET scan (we’ve lost count, but reckon it was my tenth) and another bone marrow biopsy (my second, and I hope my last, since they really hurt). Neither showed any signs of recurrent lymphoma (B-cell or T-cell), nor any other indications of something sinister brewing. They ruled out lymphoma after the scan, and the biopsy revealed nothing resembling leukemia, which was certainly good news. There was no clear indication of what caused the dip in my WBC counts, which may have contributed to the very bad stomach upset on Hallowe’en (it felt like food poisoning to me) that sent me to the hospital for a couple of nights. After some neupogen (a drug which, when injected, boosts white blood cell production), my WBC counts have stabilized somewhat, though they remain a little below normal, and it seems that there is no cause for concern for the time being. Needless to say, I am relieved that this episode seems to be over; I have been lying low in recent weeks, in part to minimize risk to my immune system, and in part to brace for potentially very bad news that, thankfully, never came. I am eager to resume normal activities, such as they are in my very different post-transplant life, and am looking forward to a reasonably calm and pleasant holiday season. So Happy Thanksgiving, everyone; in case of scarcity, you can add an extra dose of gratitude to the mix on my behalf.
Here’s an update on my current condition. As most of you know, I’ve suffered two types of lymphoma over the past two years. I’m now happily in remission from both, but the ongoing effects are considerable.I suffered acute graft-versus-host disease after the stem cell transplant I had in January 2016, with severe complications in my gut and (most surprisingly) a complete loss of vision thanks to corneal scarring. My vision has gradually improved since then, and in June of this year I had a corneal transplant in my left eye, which has improved my vision to the point that I can read and write again, though it’s not easy. I continue to take a lot of medications and undergo treatment twice a month to control my chronic graft-versus-host disease, which causes ongoing gut discomfort and low energy.
I have taken disability retirement from Sac State and have no plans to return, preferring to focus on my roles as husband and father, as well as to explore a variety of short- and long-term writing projects. I have good days and not-so-good days, physically and otherwise, but the former are outnumbering the latter by a widening margin. My levels of strength and energy are vastly improved from a year ago, though not by any means back to pre-cancer levels. Most importantly, I am very glad, very grateful, and very lucky to be alive.
Note to Day +17 self: what kind of hubristic statement was that? It turned out that I had a lot to worry about on Day +18: a seemingly interminable bout of gastrointestinal GVHD that left me completely exhausted and desperate. It had seemed so obvious that I had GVHD much earlier, but the one doctor who mattered was still saying no; is this new symptom really going to convince her? I told my nurses, and one of the junior attending oncology fellows, my tale of woe with what I’m sure seemed like pathetic self pity, but they listened respectfully and promised me that they’d advocate for me when the oncology team met.
And here, in this moment of intense discomfort, I had one of the more bizarre and intense of my very recent experiences with painkillers (and the effect of withdrawal from them), since some have asked me about that. Normally, the worst they do is make you tired, so it’s hard to focus on anything. Yesterday morning, however, when I was no longer under any drug’s influence, be it painkiller or sedative, and instead was in the grips of and endless rush from bed to toilet, something in my own obsessive literary education took over my thoughts, so that I found myself being lectured by what seemed like the ghost of Ted Hughes, the talented, charming, but rather violently obsessive poet who married Sylvia Plath (who ended up committing suicide, as did his second wife). Anyway, this ghostly Hughes really had a lot to say about many of his best early poems, criticized the way I’d been teaching them, and then went on to lecture me about the role of brotherly love in Norse Mythology, as if my failure to address these mythological narratives in my blog or poetry were somehow a personal offence to him. This kind of thing doesn’t happen to me in periods when I’m not taking painkillers on a regular basis, and clearly my body was angry with me for not giving it the “fix” it wanted; these drugs can jump you even when you’re in withdrawal from them.
Anyway, as these nightmares were going on, well into the morning nurse changeover, a nurse popped her head in and announced that I’d be starting on steroids for my GVHD, just like that. Instead of feeling fearful at the confirmation that I had GVHD, I felt like shouting my vindication to the skies; very much the same way I felt when I was finally diagnosed with lymphoma, after months of private certainty on my part, and official hemming and hawing from my first oncologist. I wasn’t just inventing scenarios to gratify my fatalism; I had educated myself enough to know, in all probability, what my symptoms meant, and now the medical establishment had committed to working with me to address them. As numerous doctors and nurses have said to me since, I’m evidently the leading expert on my (admittedly unusual) type of lymphoma.
Anyway, what it boils down to right now is that I am already feeling much better, both physically and mentally, now that they are actually treating my condition. Nobody is sure when the tummy troubles will go away (I can assure you they’re still around), but a discharge on Tuesday or Wednesday could still be on the cards. As long as no new GVHD flare-ups. As my nurse said today, all the types of GVHD that I’ve had are curable and reversible. However, the list of non-acute GVHD manifestations is a short one, and I have pretty much exhausted it; if we can stop them in their tracks here, the fact that I have had them at all will actually be strong indicator that my new immune system is behaving rightly: like a well-trained guard dog, it is willing to attack anything it perceives as an intruder (including lymphoma). The more acute types of GVHD (more stubborn gastro problems, damage to liver or kidneys) do not have any upside of the “what doesn’t kill you make you stronger” type; like an abused or incorrectly trained pit bull, they are just bad news, pure and simple.
I woke up this morning with what I think is an open-and-shut case of Graft vs Host Disease: the tingling pain in my hands (palms, especially) and in the soles of my feet is not entirely new, but the refreshing sleep I had just gotten meant that I could regard it in isolation as a distinct symptom, not just as more of the same skin rashes that are generally compatible with GVHD. I reported this epiphany to my nurse, and on the strength of it I got a quick dose of oxycodone, as well as a promise to raise the issue with the doctors when they huddle later on this morning. We’ll see how Dr. R. feels about this latest development; I hope my hard-won walking privileges (granted just yesterday) aren’t going to be revoked. Maybe I should go for a walk now, just in case…
Well, Dr. R. sure is a tough nut to crack; after I proudly displayed my stigmata, as it were, she patiently explained that she still doesn’t think we’re dealing with GVHD, despite all these juicy symptoms, and despite the fact that they’re going to treat my new symptoms as if they were GVHD. So I’m now getting Gabapentin, a painkiller that works on nerve pain and is also used to control epilepsy; it is also seeing a rise in recreational use, apparently.
Anyway, given the fact that her junior colleague on the attending oncology team has twice sided with me in seeing my symptoms as GVHD, I’m wondering if there is a generational/terminological issue here. Maybe Dr. R is from the old school, where calling something a “disease” suggests that something dire or life-threatening is involved. In a way, it’s nice to hear that she’s not calling for desperate remedies in my case; the rashes and palm/sole pain are not part of what she thinks of as acute GVHD, which is the only type of GVHD she is concerned with. She may also be less “up” on the various statistical probabilities of cancer recurrence post-transplant than my usual oncologist (which is likely enough, since he has a real rep for his expertise in such matters), and so she may be less interested in looking for signs of less-acute GVHD. That doesn’t mean she doesn’t know her business; she evidently does. Besides, my walking privileges remain intact, Monday remains a reasonable best-case scenario discharge date (though admittedly Dr. R. was less bullish about that prospect today than she was yesterday) and my most recent c-diff sample came back negative. So what am I even worrying about?
Though I spent much of the day yesterday trying to understand my attending oncology team’s (to me) counterintuitive attitude, the design behind the scattered pieces of the puzzle has become a bit clearer today. In essence, the attending onc team’s lead doctor, call her Dr. R, who is also the founder and grande dame of the stem cell transplant unit, has been equally uninterested in the positive and negative implications of the dermatology team’s certainty that my rashes are symptoms of Graft VS Host Disease.
The fact is that the rashes aren’t bothering me very much, I have some good creams for them, and they don’t seem to be connected to any more dangerous types of GVHD. Dr. R’s focus is on the bigger picture as regards the transplant itself, so she’s making sure that they are monitoring my liver enzyme levels—the liver would be a way worse battlefield for graft cells and host cells to be duking it out. But she is also (good for me to hear) very committed to dealing with the c-diff business, which can make my life truly godawful for 2-3 hours at a stretch. This means she’s discontinuing all the “covering” antibiotics, and stepping up the dose of the antibiotic we have been using to target c-diff.
The other implicit message here is calling “B.S.” on those who claimed I had double pneumonia (I remember a particularly annoying 1-step dance: a trumpeted announcement from the door frame that was never even followed up on). I had been tempted at the time to call in my favorite lung doctor from May (who was incredibly thoughtful and not so eager to jump to conclusions, let alone prescribe treatment, without a lot more reflection), but since that was the same day (consulting handy blog archive confirms it was Day +11) I also got the news about c-diff, I guess for once I chose to keep my skepticism quiet and let things play out.
One other newsworthy item to report: Dr. R said she feels that this coming Monday (February 1) is a realistic date to plan on going home. This isn’t too surprising, I guess, considering that my transplant per se was a massive success, by most immediate measures, and that c-diff is the only major visible fly in the ointment, as it were. It’s really not too much to suppose they’ll manage to get that under control within the next 5 days or so; I just learned that one of the Infectious Diseases doctors I met here last Fall has literally written the book on how to deal with c-diff!
A vignette from the hall of mirrors in which I live (think of me as a guy in an unpublished story called “Lost in the Not-So-Fun House”): people rush in to say urgent things to you, but don’t have time to answer questions about their implications. They depart, promising to come back with their higher-ups, in a few hours. This full-two step dance was accomplished this morning by two doctors from Infectious Diseases, who at first rather vaguely as a single human and then, in more detail as two, assured me that they were very concerned with getting my c-diff problems in check (which I certainly appreciated, since my oncology team really don’t seem much bothered about the c-diff detail at all, what with my numbers looking so darn stellar and all). The ID folks’ big change of plan, though, was slightly to increase the dosage of the drug they’ve already been giving me for this purpose. So much pomp and circumstance in this “urgently incomplete/delayed information” dance, but lacking in the Big Reveal department.
Then this afternoon the first step in this very same dance was just performed by a doctor from Dermatology, who stopped by to announce that the skin rash biopsy they’d done showed that the rash was consistent with graft vs host disease. No time for idle chit-chat, though—tootle-oo!
Ah, excuse me?
Can we talk about this for just a second before you go off, shake someone else’s hand and hit them between the eyes with a point-blank bombshell?
Well, I was so downcast that I couldn’t get any of these syllables out, so I am awaiting the second visit at some point this evening. But, I tried to reason with myself, and still do, along the following lines:
Just because someone makes you the victim of their tactless manner of transmitting information doesn’t mean that it is necessarily bad news.
But this means I have Graaaaaft Versus Hooooooost Diseeeeeeeease!
Not necessarily. Just that the rash is consistent with it.
But let’s be real. It’s probably GVHD.
Maybe so. And even that is perhaps a blessing in disguise.
Your oncologist has been saying all along that he wants to see some GVHD in your case, because if there isn’t some of that Graft vs Host effect, there will be no Graft vs Lymphoma effect.
Ahhhhh is right. You remember now what we’re here to do? To get rid of that cancer thing you had, the really rare type of T-cell lymphoma, with the lumps? Well, if these rashes are relatively painless, benign manifestations of GVHD, so why not? There are a lot worse options for GVHD.
You don’t have to remind me.
We left it there, more or less, and when the doctors returned, about 4 hours later, I was able to take their confirmed, shared, mutually sanctioned opinion (that not only were the rashes consistent with GVHD, but that they were almost certainly their product) with a certain degree of calm. I asked whether the rashes were indicative of a link to a more dangerous organ-based version of GVHD (answer: no), whether they had to be treated with their special steroid ointment or another antibiotic cream I happened to be using (answer: predictable bias toward the former), and whether they had talked to my oncology team about this finding yet (no, but they surely would).
Now would that have been so much harder 4 hours earlier, with only one doctor instead of two? Answer: none. (Question not really posed at the time).
I hope this shows you guys how incredibly important it is for me to have this blog, and some readers; a forum where I can try to piece together a gigantic puzzle that nobody, not even my esteemed, even revered oncologist (who never does these kinds of dances as far as I know) can always be on hand to explain.
So thank you for being you, the great, sane reader in the ether…
My room doesn’t look the same today; in fact, I think it looks like an entirely new space, with only the kids’ art and various pictures and notes I’d taped up to suggest I am still in the same room I’ve inhabited for nearly 20 days. I think the transformation occurred on Day +1, but I didn’t realize it right away; I’d assumed I’d get maddeningly bored by the sameness that surrounded me, so I ignored the first hints. Besides all that is so “Yellow Wallpaper”y, right?
OK, full disclosure, the potent sleep medicine they have given me lately, at increasingly late hours, may have had some influence on this post. It certainly has made for some pretty wacky morning meetings when the nurses change over and new doctors pay their social calls: imagine me as a puerile, hung-over teen rock star surrounded by his manager, financial advisors, creditors, in-laws, etc who are all fighting for a fragment (figment?) of his elusive (illusory?) attention. Such an imaginary person, feeling as I do at such a time, might say, or think, “If my throat weren’t in such bad shape, I would denounce the vapidity of your attempts at expression. However, since I can barely finish a sentence without my headache bursting my backwards baseball cap, I will do us all a favor and drift off for a bit more of the sleep I ought to have gotten last night.”
However, I digress. I feel this room is different, reoriented somehow (and the foot of the bed has definitely shifted towards the window, by the way, and I don’t want it fixed; I like the asymmetry). My kids like those Time Traveller books (the ones where a helmeted dweeb visits ancient Rome, medieval times, Egypt in its pomp etc) and I’m thinking maybe this room feels like it has changed because it has moved me back and forth through my own biological transplant time; it took me through some pretty fetid catacombs, and it started to feel like a crypt. Now it’s taking me out of the most morbid scenario (engraftment never happens, I shrivel up and crumple like a moth-eaten manuscript) and into pastures new. The daylight, once just an abstract brightness from beyond, can now enter the room and belong.