Rollercoaster

Warning: Images of medical scans in this post, if that’s not your jam.

At the end of my last post I had a short update from the “Spoke Too Soon” department, and boy did I speak too soon. What started as a rash (appearing like an omen before our eyes) turned into one damned unpleasant week.

By the time I got back home that day, the rash covered most of my body (I’ll spare you the photos), and a few hours later I got smacked by a fever. By that evening I was fully into the chills, sweats, lightheadedness, and not-quite-myselfness of the fever, which took the better part of 4 days to finally shake itself loose.

The rash itself took longer to fade (over a week), and right in the middle of the accompanying fever suddenly remembered, “oh yeah, I’m a rash, I should start to itch too, that’ll be great!” So then there was that, from head to toe.

I’ll say this: when it’s 3AM and you’re sitting on your leather couch (because it’s the piece of furniture that feels coolest against your skin), not entirely trusting the time and space around you because of the fever dreams, hopped up on Tylenol, Benadryl, and of course all the treatment drugs you put into your system that morning, resisting the urge to sandpaper your own skin and instead slapping yourself with ice packs and slathering yourself with lotion to buy 5 minutes of relief… you can momentarily find yourself not thinking about cancer!

It was all (surprise!) a more-or-less expected side effect of the treatment drugs. Everyone’s body responds different, but the itch, the rash, the fever have been experienced by lots of other patients in the trial as well. It sucks, but it is an indicator of a strong drug response (a good thing), and it’s usually most severe in the first cycle of treatment, greatly diminishing or disappearing in the ones to follow (effectively it follows the size of the tumor). So it should be much better from here on out.

Thankfully the worst of the symptoms passed with enough time to enjoy a few days in the ever-so-slowly-emerging Seattle sun, to spend some nice evenings with Esther, and even hang and commiserate with friends around the fire pit, before hopping a plane back to Bethesda and my hospital room at the National Institutes of Health.

This cycle I am completely inpatient at the hospital, for a total of two weeks (I am writing this on Day 6). The reason, as I’ve mentioned before, is that they’re adding the fifth drug to the treatment mix, a real beast called Venetoclax. It’s a drug that blocks the function of something called a BCL2 protein — a totally normal body protein that helps prevent normal cells from dying before their useful life is complete, but is too overabundant in lymphomas like mine. Because of that, the cancer cells don’t die when they should. Venetoclax suppresses that overaggressive death-prevention feature and allows the body’s normal regulation to take over again. And by all accounts, it does it well. From an NIH paper: The most important and impressive outcomes of venetoclax treatment include a rapid induction of apoptosis and drastic reduction of the tumor bulk within a few hours after administration. Nuts.

Because it does its job so well, it can come with problems — with so many cells dying at once in your body, it can throw off your chemistry so intensely that it can cause a host of symptoms including organ failure or death (this is the tumor lysis syndrome I’ve mentioned before). So it’s really important that patients are here and being closely monitored. And closely monitored I am: I’ve been on a saline IV for most of my stay (keeping the kidneys in good shape), I get my blood drawn and tested on most days (usually 4 tests per day, sometimes 8), and I’m just a few feet away from a team of truly wonderful nurses who regularly are checking everything about me. Everything. The attending lymphoma doctor reviews each lab result as it comes in, and needs to give a thumbs-up each time before any the treatment continues. If for any reason things seem off, there’s a protocol in place to get me on fluids, re-establish a normal body chemistry and electrolytes and such, and then get back onto the treatment.

That said, here on Day 6, everything is going great. I’ve had no real side effects, all of my blood tests have come back healthy, my body is handling the new drug well, and I feel like I’ve got all my energy. Great news all around. But of course the lack of medically-induced excitement has led to another challenge, for me especially — the boredom. With no major issues happening, I’m very much just … a man in a hospital for two weeks. So I’ve just needed to find ways to fill the time.

My parents visited earlier this week, which helped a lot. We got to catch up on life, it felt good to have “my people” here to shave off some of the loneliness, and in some ways because we were all out of our normal contexts we were able to connect in deeper ways than we had in a while. Plus I was untethered from the IV for some of it, so we got to walk around outside and explore the NIH campus in the swampy Maryland heat.

I’ve now become an expert at wheeling my IV cart around the hospital, so every day I’m doing laps around the floors and exploring some of the nooks and crannies of the building. It keeps me moving and I’ve learned a lot more about the NIH (which I may share more of my feelings on in a future post).

And obviously I gotta eat. The hospital food is really quite good, on the spectrum of hospital food. But it is hospital food, and it’s rapidly losing its appeal. I miss variety and I miss cooking.

I can neither confirm nor deny that one day I snuck out to the campus gate to obtain a contraband lobster roll from a Doordash driver.

I’ve been trying to write, to draw, to meditate.

I’ve been working on some fun projects (have laptop, will geek out).

I’ve been swapping life stories with the nurses.

I’ve been talking and texting with friends and family.

I’ve been watching some movies and shows (Esther recommended Only Murders in the Building — it’s great. Gotta love Steve Martin.)

I’ve been reading. A lot.

Despite the activities… of which I’m sure I’ll invent some more … it feels like it’s been a hell of a lot longer than six days so far. I can at least say I haven’t felt too anxious about that, but I’d say I’m still very much figuring out my relationship to stillness. It’s hard for me to stop moving.

I’ve also had a lot to reflect on during this time, and not all of it fun to be with. The feelings of loneliness, the distance from the people I love and care for, this still-unresolved identity of myself as “a cancer patient”, the complete upheaval of our lives in a blinding flash just 8 weeks ago and the implications of that, rethinking my relationship not just to my mortality but to how I want to spend my future. All of that is here with me as well — not in a depressing or despondent way, but just in a heavy and thoughtful way.

So, as with everything, this is just a journey, and one I’m just learning to be on.

All that said, I’ll close with the really crazy part — and here’s why I warned you about medical images. When I arrived here at NIH, I got another CT scan in order to track the progress of the tumor (they’ll do one each cycle). And from the first cycle alone — three weeks! — the tumor’s already shrunk! By a lot!

Check out the photo. This is a cross-section view of me as if I was lying down on my back and you were looking through my feet. The “after” picture is on the left, “before” on the right, with measurements of the tumor marked with colored lines.

It goes without saying this blew my mind. I knew things were improving — I don’t have a bulge under my ribs anymore, and I don’t have the pains I did earlier on — but I never thought the treatment would progress this fast. And this scan was before I started the new drug!

Man… I’ve still got a road to walk, and the most important part will be that this treatment clears my blood and bone marrow of the cancer … but seeing this progress has been such a psychological and emotional gift. It’s given me a perspective and a bright torch to keep me going through the next few weeks.

One week left here in the hospital. Esther comes out on Friday and I’m really excited to see her. Then we’ll fly back home, and I’ll have at least a few days to be grateful for home and for the presence of my person and my people. Then it’s back here again for a few days, part of my normal three-week cycle, but at least it’ll be outpatient from here on out.

Today’s a good day. Wishing you all well out there. And if you have any questions or curiosities or something you'd like to read more about, lemme know! This is a good excercise for me.