Today has been another dip in the roller-coaster ride. (I guess we can be grateful that we aren’t doing loop-the-loops yet?) Brad is very fatigued and his gastrointestinal GVHD symptoms continue. I was also concerned to hear from the nurse that some of his liver function tests show elevated levels, but Dr R has assured me that the specific enzymes that are elevated are not the ones commonly implicated in GVHD of the liver. Rather, the uptick in levels is probably due to some of his medications, particularly the change from IV to oral medications, and the likely culprit is the antifungal medication he’s on. (He’s on both an antiviral and an antifungal prophylactically, and continues on vancomycin—a powerful antibiotic—to continue warding off the C. diff. There are several other meds mixed in there, so many it’s hard to keep track of them all, and the cocktail may well be accounting for Brad’s fatigue and a certain measure of confusion today.)

Meanwhile, his white blood cell counts have shot sky high, even above the normal range, as a function of the steroids he’s receiving to combat his GVHD. He’s also having some difficulty working up any appetite or eating, and his weight is dropping precipitously. Some of you might recall that Brad was pumped full of fluids in preparation for the transplant and gained close to 25 pounds of water weight his first week in here. There’s now been a full 40-pound drop since the high point he reached shortly after admission. For anyone who worries this blog is about to take a turn toward a supermarket-checkout magazine cover line (“Lose 40 pounds in 3 weeks!”), rest assured that we’re not exactly prepared to recommend the Stem Cell Transplant Diet as the next weight-loss fad to sweep the nation.

I confess I’m a bit worried about his difficulty with eating and his lack of nutrition. This morning I got here around 11am and encouraged him to have a go at his breakfast tray. It took about an hour for him to take in three bites of Raisin Bran and slightly less than a half cup of Ensure mixed with chocolate milk. As I write, it’s 3pm and the lunch tray stands untouched; in fairness, I don’t think hospital beef stroganoff looks all that appetizing either. He’s mainly interested in hot broth, which the nurse’s station stocks and can provide—but which is not terribly high in calories, protein, or anything except the power to be soothing. In short, he’s making valiant attempts to take in nutrition, but unless there’s a rapid and thorough turnaround in this trend he may be heading back toward IV nutrition (TPN).

With this down day and the difficult weekend, perhaps needless to say, all talk of and predictions regarding a discharge day have halted. Truth be told, I’ve been equal parts excited and scared to think of him coming home—and as sick as he is today, it’s certainly for the best that he’s in the hospital, as much as the girls want to see him and as much as I would love to quit shuttling back and forth to Davis 8. Still, caregiving at home will be no small feat.

I realize it’s also been a long time, on this blog, since I’ve said anything about what is going on on the home front. Joe and Susan, Brad’s parents, have been with us helping everything run smoothly, which has been invaluable. The girls have been doing well (a bout of stomach flu for Nora excepted), and carrying on with various activities. Nora is in a girls’ adventure club with her bestie and a few other girls aged 10-12, and has gone rock climbing twice this weekend (she was proud to conquer a route ranked 5.10). Lucy, who is currently at a birthday party (thanks to the parents of her bestie, who have been taking her for a much-appreciated every-Sunday play date) recently turned in a diorama on weather for her first-grade class; no surprise, our rather electrically charged girl chose lightning as her weather phenomenon and constructed quite a dramatic scene. I’ve been carrying on writing and so on, and tomorrow I’m planning to get out of town for a night or two to take a little break before Brad comes home (great gratitude to Joe and Susan for making this possible).

Today marks four weeks from Brad’s admission, as well as the end of January. I can’t say I’m sorry to see this month end. I know most places February is a cold, dreary month, but here in northern California, February usually brings a week or so of early false spring, when the almonds come into bloom. To me, February usually feels like it brings hope and a promise of better days ahead. Here’s hoping that’s the case.

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.

As those of you who are friends with Brad on Facebook might have already seen, today was a difficult one for him. He asked me to post today as he’s not quite up to it, and I’ll spare you the worst details of today’s setback. Suffice it to say that he has now been diagnosed with GVHD (graft vs host disease) of the gastrointestinal tract, which comes with a lot of pain and other nasty symptoms. He’s now on IV steroids to treat it. (As he’s once again not eating, oral steroids like prednisone would be too hard on his stomach.) He’s also been given pain meds again, to address the abdominal pain.

We didn’t get a chance to ask a great many questions about what all this portends for the future or how long he’s likely to suffer with this new development, but the hope is that the steroids will work to help fairly quickly. I think he and I are also both hopeful it will help alleviate the irritation of his hands and feet that he wrote about yesterday. GVHD can strike without warning, so in a way it’s good he was still in the hospital when this latest development took place. No word from the medical team yet, either, on how it might affect the tentative plans for discharge next week. The roller coaster continues.

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?

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 quick update for tonight. Brad is doing a bit better today, but when I was at the hospital this morning was quite tired. The good news is that engraftment continues very quickly. Today his white blood cell count was 3.7, his neutrophils 2.4. The neutrophils, which are one subtype of white blood cells, are the measure the medical staff are really looking for, and they want to see a sustained set of readings over 1. (That 1 represents a count of 1000 neutrophils per microliter of blood; thus 2.4 is 2400 per microliter, and so on.) A normal white blood cell count is somewhere between 4.5, or 4500 cells per microliter, and 10 (10,000/mL) so Brad is not all that far below the normal range. This is great news, indicating that engraftment has been swift and continues apace. (Thanks again for those great stem cells, James.)

The possible downside of a quick engraftment is the appearance of GVHD, graft vs. host disease—essentially, Brad’s new immune system attacking his body, the host, as if it were a giant disease. GVHD can express in a number of ways, from irritating (rashes) to potentially dangerous (GVHD of the liver, for instance), and he is being constantly and minutely monitored for everything that could indicate GVHD, from skin irritation to liver enzymes. Brad does have some rashes and skin irritation (for some reason his elbows have been bright red; who knew elbow rashes were a thing?), and there’s some disgreement among the medical staff as to whether they are GVHD or just random rashes. The attending transplant physician, who has years of experience, thinks the rashes aren’t serious enough, or clearly enough GVHD, to quite warrant medication (systemic steroids), given the amount of medication Brad is already on.

In fact, they’re trying to step down the various meds and things he gets through his central line, including the IV nutrition. Brad’s throat has healed up enough that he is now attempting solid food; he told me he had a heart-to-heart with the dietitian today and expressed his strong preference for real food as opposed to the hospital’s “liquid diet” of sweetened yogurt, Ensure, and various pureed pap. Rumor has it his first attempt to eat dinner will be a French dip sandwich.

Those who have read Brad’s two latest updates may be either mildly relieved or very disappointed to learn that he has also been taken off his PCA, the patient-controlled dosing of the narcotic he was getting for his mouth and throat pain. The good news there is that the pain is substantially lessened; the bad news, for those of you following at home, is that slightly loopy updates may be less frequent in future. I’ve done my best, however, by pouring a glass of wine before I wrote this one.

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…

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.

Today marks Brad’s 20th day in the hospital, meaning he’s now pushed past his previous hospitalization-length record of 19 days, set back in May. Unfortunately, today has not seen much of an upswing from the discouraging challenges of yesterday. His C. diff continues and is being treated with oral vancomycin; so far, luckily, he doesn’t seem to have the abdominal pain that’s often associated with such an infection.

His IV tower is crowded with all his other medications: He’s also on several other broad-spectrum antibiotics (the rest of them all given via IV), the immune suppressant medication he will continue on for several months, TPN (nutrition given via IV; that’s the not-so-delicious-looking yellow fluid), and saline fluid, plus IV acetaminophen when he spikes a fever. For some reason, this last drug—which is just Tylenol,  but given intravenously—sends the entire medical staff and pharmacy into a tizzy. Apparently it’s extraordinarily expensive and the hospital pharmacist is strongly opposed to dispensing it. (Surely, however, the cost of the Tylenol is just a drop in the bucket of what this whole hospitalization will cost? It’s hard to fathom how much that might be, and every time I think about it I am grateful for our excellent insurance plan, which comes to us courtesy of the taxpayers of California. Thanks, everyone reading this from in state, and let me just take a moment to acknowledge how privileged we are in this regard and say that I wish everyone in the U.S., and indeed everywhere, had equal access to this level of medical care when they need it.) But Brad can’t swallow pills at all and even liquids are a challenge, so his medical team has been going to bat for him and fighting to get him every dose, to lower his fever. I told the doctor yesterday that if they need someone else to get on the phone and yell at the pharmacist I might have a little aggression to spare these days.

Speaking of fever, it’s been spiking a lot, up to 104ºF last night. That’s sapping his energy, and he’s been dozing most of the time while I have been at the hospital today. His breathing has also been a little more difficult and shallow, probably—according to the doctor—as much in consequence of the fever as of the pneumonia identified on CT.

We were told, well before the transplant, that recovery from it would not be linear, and this week certainly confirms that it has been and will be a roller coaster. I never did like riding roller coasters, and it turns out I like metaphorical ones no better than the nauseating ones in amusement parks. We were all so encouraged, a few days ago, to learn that he was starting to engraft, and it was hard not to think that it would then be a relatively smooth path upward. But we’ve had another sickening drop. It’s equally hard to stay confident that a corresponding rise will come, but it will.

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.