Day +17

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…

[Time Passes]

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?

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Day +16

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!

Day +14

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.

What?

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.

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…

Day +13

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.

Day +11

Into each miraculously early recovery a little rain must fall… In my case, the rain is taking a double form; one is a tentative diagnosis of double pneumonia (I’m choosing to regard it as tentative because my go-to pulmonologist wasn’t consulted, and he knows my lungs better than anyone), and the other is an all-too clinically watertight diagnosis of C-diff (Clostridium difficile, which is everything its name hints delicately at, and more). I don’t seem to have the more dire symptoms of either condition, as of yet, but it’s not the greatest news to be getting as we head into the weekend. The prospects of a discharge next week (which had been discussed by the oncology team) now seem impossibly remote.

However, a world-class medical facility like UCDMC, with special emphasis on the transplant unit, knows how to roll with these punches. I hope it can teach me how ASAP, because right now I’m doing more reeling than rolling, as it were.

Day +10

I somehow knew today was going to be a better day than yesterday, mainly because it couldn’t very well be worse. And I have not been disappointed; I received a charming poop-emoticon laced text message from Lucy; I succeeded in talking my nurse into insisting that the hospital pharmacy get the lead out and provide the IV bag of Tylenol I badly needed (since I can’t take pills at all these days and swallowing even liquid forms of medicines is an ordeal best avoided) in a timely manner.

Then there was this bit of (huge) good (great) news: my blood counts are climbing! My White Blood Cell count has stopped being essentially invisible and has hit the 0.3 mark. Monocytes and Neutrophils are also showing improvement. I have no idea what this really means from a medical or scientific point of view, but it’s important (in this layman’s terms) because it is evidence that my new immune system has already started engrafting. So not only did my brother produce a hell of a lot of stem cells, but they seem to be the enterprising, nation-building kind. Yes, I did need this morale boost, but this is more than just that: it’s hope in the short term for an end to my sore throats, headaches, etc., and hope in the long term for being cancer-free.

Day +8

On the aforementioned list of things being examined minutely, you can now add a new and involuntary entry. Owing to a generally secure system of privacy, and to the discontents of being a man with waterlogged nether regions, I have of late adopted Arthur Fonzarelli’s views on the supererogatory nature of wearing underwear beneath a respectable gown (the relevant quote from Fonzie’s high school graduation was, I believe,“Yo, I am NAKED under this”). All well and good, because Fonzie was too cool to be exposed in an undignified manner under any circumstances. Not so your humble correspondent.

In fairness, I wear loose leggings all day, so going to bed “commando” did not seem like a very risky strategy until the last couple of days, when my bedtimes have been creeping later and later (mainly due to late-arriving meds) and thus my wakeup times have been pushed back from their usual 6:00 AM to 8:45 or 9:00 AM. By this time, the morning shift feel they have indulged me long enough and thus prosecute their examination routine with ruthless efficiency, ignoring cupped, still-dopey hands strategically shielding the “pee pee parts.” Et voilà! My Primary Nurse got an eyeful of something that make it clear that, while it might have been too early in the day for me to have my trusty sense of humor at the ready, hers was in full working order.