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.

 

 

Day +1

Day +1

Despite the dopiness I felt as the stem cells were being pumped into me yesterday evening, I had a lot of trouble falling asleep last night. There was certainly a lot to think about and some major emotional readjustment to do: for months, everything had been leading up to that climactic medical moment (kind of like the birth of a child), but suddenly the horizon looked (and still looks) a lot flatter. The complex transplant plans came together beautifully, and now we settle in to wait for engraftment (when the new stem cells come to root in my bone marrow and start making a new immune system). This doesn’t happen overnight, unfortunately; most estimates I’m hearing are between 2-3 weeks, if all goes well. Poor Lucy has been asking when I’m going to come home, and it’s hard not to have a proper answer ready to give her, beyond the long explanation of why I can’t come home today, as she seems to have expected. (I got Uncle James’s stem cells, didn’t I? Well, yes, but…)

One further resemblance between me and a very young child: when all else fails, sometimes judicious use of Benadryl will induce much-needed sleep.