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.

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Day +12

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.

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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.

This morning, however, the transplant doctor did say that the lung inflammation may be more from his early and relatively rapid engraftment—which, in a glimmer of good news, is continuing—than from an infection. To be on the safe side, though, the transplant doctors are bringing in a consult from the Infectious Diseases specialists and if the breathing does not improve they will call in the pulmonary team as well. So, while these setbacks aren’t any fun for Brad (to put it mildly) and are worrying for the rest of us, I have a lot of confidence in the treatment he’s receiving and how attentive his care team is to even the very smallest details of his condition.

 

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.

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 +9

This morning Lucy asked me when Daddy is coming home. I don’t know, I had to answer. I had her count up the days Brad has been in the hospital, on the calendar we have been Xing off. Per our six-year-old, this is Brad’s seventeenth day in the hospital. He’s therefore shortly to exceed his previous record for length of hospitalization (nineteen days), set back in May. That’s the kind of personal best nobody wants, but such is life with cancer.

I told Lucy that seventeen days is most likely about halfway through Brad’s hospital stay this time around. Her next question was: why does he feel worse now, even though he got the stem cells last week? It’s a good question, and I tried to explain in kid terms to her why he feels crappy now, and why his recovery will be slow and will contain quite a few ups and downs. Coincidentally, just yesterday Brad suggested that we post an overview of his medical status today; he’s been keeping everyone updated on the day-by-day, but we thought a big-picture look at where we are and what we can expect going forward could be helpful. So here, not quite in the terms I used to explain to Lucy, is that look.

Right now he is at an absolute nadir in terms of his white blood count, and he say he feels like it must be a nadir in how he feels as well, that he can’t possibly feel worse than the mixture of fatigue and discomfort that he’s felt all day today. (Hence my writing today’s post.) That’s unfotunately as expected—the myeloablative preparatory regimen of intensive chemo and radiation that his oncologist selected was intended to wipe out everything in his bone marrow, plus all his cancer, plus, unfortunately, a lot of other stuff besides—like his hair, any coating on his mucous membranes, and all his energy. While these side effects are miserable, they are medically expected and also reasonably well managed by the nursing staff and doctors.

In a few days’ time his white blood counts (recorded on a special calendar the nurses posted in his room) should start to creep up, though we don’t know exactly when. The climb in his WBC numbers will mean that the stem cells he received in the transplant on Day 0 are starting to engraft, or repopulate his bone marrow. In other words, they’ll move in and start growing him a new immune system. Brad’s transplant nurse said that engraftment can start happening as early as Day +12, though a little later is more typical.

Once engraftment is taking place, the side effects from the preparatory regimen should start to fade—but new side effects in the form of graft vs. host disease (GVHD) will likely start to pop up. We can’t know what these will be, but they stem from the new immune system failing to recognize the host (Brad) as its new home, and treating it like a disease instead. Often, they look like a localized allergic reaction, and they are typically controlled with steroids. Because GVHD can flare up in unexpected ways and places any time, it’s likely that Brad’s trajectory of recovery will look less like a continual upward slope and more like building waves, with plenty of peaks and valleys.

For the long term, the medical team also keeps GVHD under control with immune suppressant medications, which Brad will be on for several months to come. This keeps the new immune system in check so it doesn’t attack the host, but also lets it settle in and start to function. Brad’s oncologist, however, is hoping to see a little GVHD; that indicates that the immune system is on the ball, functioning well, and ready to attack the cancer that it must fight in future.

So, all this is a delicate medical balancing act, a micro-drama taking place on a cellular level. But from the outside, it just looks like a lot of waiting—and will for a long time. That’s hard not only for six-year-olds, but for this particular grown-up as well.

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.

Day +7

Because my verbal replies are monosyllabic these days, and my verbal statements curt, at best (with some clumsy hand gestures), it would be natural to assume that I have lost my sense of humor. Nothing could be further from the truth, however, so today I am inventing a new type of joke, the kind that (conveniently for me) doesn’t have to be all that funny to seem worth composing. Welcome to the next big thing in blog comedy: Day +7 stem cell transplant patient jokes. I know this is a genre that will have limited appeal, but then again maybe that’s just as well.

Some random examples (or classics) of the genre:

Q: Finding the arena empty, where did the Day +7 stem cell transplant patient choose to sit?

A: In the nosebleeds.

 

Q: Why was the Day +7 stem cell transplant patient not welcome back in certain public restrooms?

A: Because he just assumed you should take your urinal with you.

 

Q: Why was the Day +7 stem cell transplant patient accused of being overly skeptical?

A: Because he found everything hard to swallow.

 

Q: Why did the Day +7 stem cell transplant patient cross the road?

A: To get to the cyclophosphamide.

(Of course, the real answer is, “What was he doing near a road? Doesn’t he know that’s where those filthy, germ-ridden chickens hang out?)

 

Q: What runs, jumps, and spikes, but has no clear connection to anything else (including volleyball)?

A: A Day +7 stem cell transplant patient’s fever.

 

Q: How do you know when you’re a Day +7 stem cell transplant patient?

A: When “to Netflix and chill” really means “to Netflix and chill.”

 

Of related interest are Day +7 stem cell transplant patient riddles…

 

Q: What gets taken from Day +7 stem cell transplant patients at least 3 times every day without being either replaced or diminished?

A: Their vitals.

 

I guess there ought to be a knock-knock joke in this vein, so here goes:

 

“Knock knock!”

“Who’s there?”

“Day +7 stem cell transplant patient.”

“Day +7 stem cell transplant patient who?”

“My sentiments exactly.”

 

OK, so maybe that last one was less a joke than a comment on the sense you sometimes get in here that your life as a patient is your entire identity. It’s not that the care-givers and staff don’t see you as a full human being, or that they make you feel less than human or individual, but rather that it feels like every single visible aspect of your life (and many that are invisible) is being examined minutely through the lens of this all-consuming, unbelievably complex procedure.