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.

Day +6

The afternoon yesterday did not in fact improve; rather, I felt sudden chills in the mid-afternoon and had to take to my bed instead of getting on my exercise bike. I was afraid I was spiking a nasty fever that would send me to the ICU right quick, but my temperature never rose above 99.3 (early this morning) and has now returned to normal. False alarm, and likely not the last one. My oncologist told me that the body is going through so many changes that such episodes are commonplace.

The good news today is that it’s now no longer Day +5, but rather Day +6, and it’s been vastly more bearable than yesterday. For one thing, we made the call to switch me from a conventional “liquid” diet, which means one consumes things resembling food, to what they call the TPN (Total Parenteral Nutrition) regime, whereby my nutritional needs are met via a bag they hang from my (now rather crowded) IV tower and which feeds into my bloodstream. It doesn’t sound like the sort of thing one would generally welcome, but lately swallowing has been so painful and laborious that I can’t enjoy even the sweetest, coldest, most appetizing fare. In fact, even my taste buds now get sore when I eat, so there’s really nothing appealing about an activity I have always previously ranked in the Top 5 of my favorites. I hope this state of affairs won’t last too long, but it’s a relief to have made a sensible call that, while it eliminates a once-pleasurable side of life, also (and more importantly) greatly reduces the everyday discomfort of ongoing existence for me.

Day +5

Somewhere along the line the no-pills directive must have broken down, since I found myself trying to swallow 2 large Tylenol capsules at 5:00 AM this morning. They were pre-meds for my next blood transfusion, and there was no time for me to kick up a fuss and have them switched to liquid form, so I popped them in and spent the next half hour (no exaggeration) trying to down, dissolve, dislodge, or, failing that, disgorge them. They just wouldn’t be washed down my dry-as-dust gullet by water, and for a while there it seemed like I was going to have to breathe through my nose, since they were somehow pinching my windpipe in addition to rubbing my esophagus raw. It was fortunate that my nurse managed to suction enough of them out so that I could finally gag down the rest, since a few minutes later I ingested just enough pectin-laced vanilla yogurt to make breathing though my nose impossible for another half-hour or so. I have long had a mild allergy to things like apple skins, due to their pectin, but I never imagined that this reaction would ensue from a single spoonful of vanilla yoghurt. The Tylenol problem was perhaps foreseeable, but the Wallaby Yoghurt company’s decision to include that particular allergen in their otherwise normal-looking product struck me as somewhat perverse. Anyway, some Benadryl (in pill form) solved the problem and I felt like a new cancer patient once again. That is, until they brought the liquid Colace, which tasted like a Drano-laced version of the thing it is supposed to soften, and made me feel more or less like the same substance. All this before noon! I’m hoping the afternoon will improve, because I’m on a pretty god-awful trajectory otherwise. On the plus side (?), I just learned that the Tylenol isn’t even considered a necessary pre-med for blood transfusions after all; they were just erring on the side of caution when they gave it to me in horse pill size form. Now they tell me…

Day +4

After some initial qualms, I’ve followed my doctors’ and nurses’ advice and requested a PCA (Patient-Controlled Analgesia) line for my painkiller, Dilaudid. My doctors recommended it as the usual recourse for someone whose mucous membranes have disappeared (as mine seem to have done, hence the ongoing sore throat I talked about yesterday) but what sold me on it was my nurse pointing out that if I controlled my doses I would actually be less likely to doze off every time I needed some. The PCA allows only rather small doses of the drug at a time, so I can tailor those doses to the amount of pain I’m feeling, as opposed to nuking the pain with a manually administered dose that can’t be spread over a longer period. Since I don’t want to be nodding off during the day more than is actually required by fatigue (and there’s plenty of that), this rationale really hit home. This was also a reminder of how amazing my nurses have been at UC Davis Med Center; I have a brilliant oncologist, of course, and he is extremely down-to-earth in his explanations of my lymphoma and how to treat it, but nurses are where the rubber really meets the road: they get to know your values, your personality, and your way of being a patient in a sense that a doctor simply can’t.

Day +3

Well, sure enough, as soon as I declare boredom with my routine, things change. This afternoon my throat was so damn dry and sore (a totally normal symptom of the near-total absence of my old immune system) that, aided by Kate’s presence, concern, and support, I finally did the sensible thing. I asked my doctor and nurse to help me out, and they were more than happy to do so, with a painkiller (which turns out to be Dilaudid), some throat lozenges, and a switch in my diet to something a whole lot easier to swallow (literally): protein shakes, “magic” ice cream cups, or some other cold, sweet things along those lines. They’re also going to get IV versions of the anti-rejection and antibiotic pills I’d been taking so that those will be administered painlessly; even a small sip of water is an effort right now.

I will admit that I’d been feeling rather proud of my surprising lack of mouth sores and my good appetite; the word “tough” had even been used in my connection (a first, as far as I can recall), but there was no denying that lunch had been a major chore to gulp down and that I needed to ask for some help. Even talking is something of an ordeal at the moment, and those who know me can guess how unusual a state of affairs that is. Fortunately, the Dilaudid didn’t make me too woozy to do my usual stint on the exercise bike, though it did make my large institutionalized-plastic La-Z-Boy knock-off feel awfully comfortable for an hour or so.

Day +2

My days post-transplant have already settled into a welcome but not especially stimulating routine: vitals and a new nurse at 7:00, trying to sleep more till breakfast; sitting and working on something writing-related; a visitor (Kate) or two (my parents) before or at lunch; then a dozy period in the afternoon when I pretend to be working hard but am often really nodding in my chair; then exercise on my bike and a shower before dinner; more work and doziness after dinner; a book to relax till last labs and bedtime anytime between 10:00 and 11:00 PM; then a long struggle to fall asleep against the various tides pressing on my bladder and belly; then, finally, a wee-hours plea for whatever sleep-inducing meds they will let me have. My mouth is dry, and so is my throat, since my mucous membranes are disappearing quickly from all the radiation and chemo, but I can still eat and drink without serious discomfort.

This is really as good as it’s going to get for quite a while, until the new stem cells take root and start making me a new fresh immune system. The short-term goal is a largely negative one: to avoid getting a nasty infection that would make life significantly worse. So I’m not sure how meaningful my daily updates will be for the next little while; it’s tempting to post something every day, just for fun (as I’ve started doing on Facebook), but in essence no news is good news, and thus I may just check in with a thought, a link to a song, or something every day (as proof of life, if nothing else) rather than continue with detailed narratives of events that are already starting to seem repetitious.

In that spirit, here’s a link to a Dire Straits song (“Brothers in Arms”) that I want to dedicate to my brother James: https://www.youtube.com/watch?v=k5JkHBC5lDs

I’ve loved this song since I heard it as a teenager, but I became obsessed with it during this past summer (well before I thought I’d need an allogeneic transplant with my brother’s stem cells) as I walked from home to the Cancer Center. The line about there being “so many different worlds” seemed to capture something bitterly true about the fragmentary nature human experience, and how wrapped up we can get in our own small lives, but the song’s calm acceptance of this uncomfortable cosmic fact gave me a certain serenity.

 

 

In the room where it happened

The word “transplant” sounds complex and possibly a little gory, like a surgery. But the procedure last night wasn’t at all. It was as dull as it is possible for a medical procedure to be, and that is a very good thing. In case anyone is interested in what actually happened during it, I thought I’d write up the details.

Brad was given Ativan, Benadryl, and some other meds about an hour in advance, so by the time I got to the hospital at 5:45 he was pretty sleepy. The transplant was scheduled for 6:00pm, after James’s stem cells had been conditioned and counted by the lab and sent to Brad’s hospital room. They arrived just a little later than that; the good news was that they collected nearly three times as many cells as they needed. So Brad got more than the minimum dose and they were able to cryopreserve some in case he needs more at some point. They use a preservative when they freeze the cells, so apparently transplants with preserved cells have a strong garlicky odor from the preservative, but with fresh stem cells there is none.

When the nurse brought the bag of stem cells into the room she asked both of us if we wanted to hold it. Brad said no but I said yes. I figured, when would I have another chance? The bag in my hand was heavy for its size and squishy, just a little bigger than my outstretched hand. The liquid inside looked and somehow felt, through the sturdy plastic, thick. Thicker than water. Thicker than blood, but a lighter color of red, really a bricklike dark pink like the preppy men’s pants they call Nantucket reds. (That color reminded me of a family vacation we took to a seaside resort in Maine a few years ago.)

The nurse gently took the bag back from me from me and hung it on the IV tower along with the bag of fluids that was already there. (They bumped Brad’s fluid drip back up for the transplant itself.) For her this was all routine, another day on shift. It was, in fact, the end of her shift, about 6:30 by this point. We were just waiting for the doctor to come in so the transplant could begin.

Once the transplant doctor arrived, the nurse attached bag to the drip where it mingled with IV fluid, and deftly and almost imperceptibly hooked it up to the lumen of the Hickman catheter that burrows under Brad’s chest and into his vein and from there leads directly to the heart. The heart was already being constantly monitored, its steady pumping recorded and able to push that viscous dark pink stuff to every corner of Brad’s body, where they will circulate until all his old bone marrow is dead and gone. And then, the cells—more than 600 million stem cells, 8 million for every kilogram of his body weight—will settle into his bones and grow him new marrow.

The drip was started, and that was about all the medical drama the evening provided. The doctor and the nurses talked about show dogs and dog breeds, about football, about former colleagues. Brad dozed off. The drip continued. After twenty minutes or so the transplant doctor said that if a reaction were going to happen, it would have happened by now, so he left. The reaction that they were concerned about was an immediate rejection; that is apparently more likely with donors whose blood type is different from the recipient. Brad and James do have the same blood type (which does mean that Brad’s blood type won’t change, a weird-but-true thing that happens in transplants). Later reactions of varying degrees of severity, called graft-versus-host disease, are likely but will happen after the new immune system engrafts.

The nurses’ shift changed and the night nurse came on. She stayed in the room for the remaining hour or so of the slow, steady drip, monitoring things. I sat in a corner in my yellow robe and disposable face mask. I took a few pictures of the pink fluid coursing through Brad’s lines, because I liked the pattern it made.

FullSizeRender 8

After a while James arrived to say goodbye to Brad; James left early this morning to fly home. The drip finished about eight, slowly turning a paler and paler pink as the end of the bag was more and more diluted with the IV fluids, and that was it: a stem cell transplant.

It was a big relief to me to get past the actual transplant. For much of the past year, we’ve been leading up to that event, and getting to it felt like a real milestone even if the actual transplant was about as exciting as watching paint, well, drip. Frankly, I am not really interested in any further medical drama. Today, Brad is doing well overall, as he said in his post, but more tired today, and his white counts are steadily dropping, as expected in the wake of the intense radiation and chemo of the prep week. But he’s still eating, sitting up, using the exercise bike, and writing. Next up: more waiting.