Getting back on course after Hodgkin's Lymphoma

It’s been a few years since I’ve updated this blog.

A few drafts sat, staled, and got shoved in the trash.

If you went looking for signs of life and health… they weren’t hard to find, but you wouldn’t have found them here. I’ve held back on pressing publish for a few years.

The short version? I was fortunate. And I am fortunate.

My healthspan is on a much better trajectory and my lifespan is likely closer to the length most would hope for.

The longer version

My inpatient stem cell transplant and outpatient recovery in late 2023 went well as far as high-dose chemotherapy and regrowing an immune system go. I wasn’t comfortable, it was pretty difficult, but I wasn’t suffering.

Then maintenance therapy in 2024 was suffering I couldn’t overcome. I gritted my teeth until I found a limit I couldn’t push beyond.

After five of 12 infusions I had to discontinue maintenance treatments. My body that’d taken so much for so long… finally couldn’t take any more. Nor were more treatments going to substantially improve my odds of being cancer-free.

It took a long time to accept I hadn’t failed — that even if I hadn’t told my care team I was done, they would have told me it wasn’t safe or worthwhile to continue.

For a period after as I recovered and slowly rebuilt my life, the odds the transplant had worked were about a coin toss. So I didn’t write.

And for a much longer period, I’ve progressed from fairly damaged and drained to pretty okay. Often far better, sometimes less. I’ve tried to be present. I didn’t want to jinx it. I didn’t want to remember it. I didn’t want to dream new dreams and perhaps need to crush them again so soon. So I didn’t press publish, I pressed delete.

Since this time last year I reverted a career pivot, started a new job, traveled to my hometown, London and LA, and slowly built new habits and routines. I also slowly returned space for important parts of my life that I had to leave behind for my treatment journey.

End of the treatment line

In the first few months of 2024 immunotherapy treatments made my weight drop dramatically and dangerously. I lost about a third of my body weight in the course of a few months. While GLP-1s were going mainstream, I was caloric teflon — weight sliding off no matter how desperately I tried to hold it on. I took in a staggering, massive and miserable amount of daily calories while nauseated, praying some of the calories would stick. I kept needing smaller and smaller pant sizes and every shirt looked like a rain poncho. At the end my ribs and hip bones were frighteningly visible.

The weight loss alone? I would’ve tried some other unpleasant options before stopping treatment. The deciding factor was the nerve damage in my fingers and hands. It was sharply intolerable, and the kind of lasting damage today’s science and the body’s natural repair mechanisms can’t entirely heal.

The days following an infusion hit hard. Like a steel hammer had been slammed into each of my fingertips and my hands throbbed as if a heavy door had shut on them. This was just a side effect of the immunotherapy meant to keep flushing my lymphatic system for any stray cancer cells — a lot of misery for a maybe.

In the weeks before the next treatment it would inch and ebb to frostbite-like numbness and spastic tingles. It felt like each of my fingers had been taped to a different phone vibrating different erratic patterns while my hands were physically, entirely still.

Typing was like rummaging in a box of small, sharp nails that kept poking long after I took my hand out. Swiping across a glass trackpad or touchscreen felt like rubbing recently burned skin over coarse sandpaper.

Today my hands are multiple letter grades improved with distance from those treatments. At best, the nerve damage is unpleasantly ignorable and each symptom more a whisper now. I simultaneously feel too little and too much, but I’ve adapted and accepted the normal as best I can while trying to heal what I can.

In addition to recovering from treatment I had to fully rebuild my immune system from scratch. I’ve had more than two dozen vaccine doses in recent years. I’ve also walked a substantial, cross-continental distance (and well beyond) to gently build physical stamina, immunity and resilience to be allowed out of physical isolation.

Harder than still having the uncomfortable chemo port that came out yesterday, harder than the medical appointments and bills outpacing a typical thirty-something’s, harder than the lingering damage and limits — is what it’s all done to my sense of time, of self, and of calm.

Part of being a celestial body in the universe is getting struck by foreign objects, solar flares and spun by gravitational forces at an occasionally dizzying rate. Life is not all planned, parallel orbits or predictable bursts of energy — you take some unexpected hits and expected hits unexpectedly along the way.

I’m attuned and appreciative that cosmic forces haven’t sheared me apart like a small pile of stardust in infinitesimal margins. That my corner of the universe, my dimension of the multiverse could be a lot darker and plenty harder to sit or smile in.

When you’re living in a closed hospital ward, watching hospitals exploding in war zones on the TV fixed above a chart of fully zeroed-out blood counts… you find yourself crystallized in gratitude you’re getting specialized care you need, even if it’s pretty challenging.

And out in the world, having some autonomy over when the gravity of your situation tugs on you — that it isn’t immediately evident to everyone glancing at you the terrors you’ve navigated — is a gift. Aligning the chaos of rotation, revolution, and random cosmic conditions into a trajectory that produces the best atmosphere for life you can muster is the hard, beautiful part of being human.

But getting thrown off course in ways known star charts can’t correct for — sent spinning into an expanse of new normals and unknowns few ever explore — those orbit-altering polarity interruptions can make your internal compass spin without reference for a while.

Where the compass is pointing

By every measure my doctors can give me, the transplant worked. My odds of longer-term survival are well north of the coin toss they were until late last year.

But I’ve seen the short side of odds — in initial diagnosis, in relapse — and my fried nervous system nags my logical brain no matter how much I try to steer to calm. I have to live, work and plan like I will reach older age and also always and often factor-in odds of the opposite.

I feel pretty healthy, strong and empowered. Also limited, fragile and damaged. Sometimes I’m aware I look like a younger man than my medical records may otherwise suggest. Sometimes I feel like a backlit billboard with bright, biohazard warnings that are impossible to miss.

Sometimes I’m climbing mountains, strolling store aisles, sitting in a cafe and I can’t stop smiling at how stupid lucky I am to be living a fairly typical, happy life.

Sometimes I’m anxious and impatient without reason, doing spacetime mental math, calculating trajectories with variables like before this and after that. Rarely but not never I’m pelted with sad, bitter or angry particles and weighed down by gravity wells of anxiety and grief. Sometimes it’s exhaustingly all of it all at once.

Sometimes at night when I close my eyes the universe feels like a fickle, frenetic cosmic meteorologist — by sunrise equally likely to forecast a doomsday or clear skies and mild temperatures.

Sometimes I think I mask it all somewhat convincingly and smoothly. Sometimes I know I’m not fooling anyone — least of all myself.

But there isn’t a time I’m not aware of how fortunate I’ve been to have a partner and community of people in my corner even when there wasn’t a star in sight. There isn’t a time I’m not grateful I’ve had great healthcare, even if I’m sure there’s no such thing as reliable or sensible American health insurance. And having time to not just survive, but thrive and build a new chapter? It’s hard work but also enormous luck. So I just count myself fortunate and work on accepting the idea that the ideal outcome is also a possibility.

A few new chapters inked, and more ahead

I had a clean scan recently. It is a welcome-but-fleeting pressure release.

It should feel a whole lot more relieving than it does, for longer than it does.

My brain knows my guard should be lower, my heart might not even feel overly bruised by dread and stress anymore, but my nervous system has been wired to hold the line. Rewiring the undamaged circuits to process that joy right? It’s an ongoing exercise that will probably take some more solar revolutions.

Still, that scan is enough that my medical team told me it was finally time to take my chemo port out. So yesterday I had that physical knot taken out of my chest. Very little has changed, for the moment my chest is still uncomfortable while it heals, but even today it makes the reality of progress finally feel more real and lasting.

Dulling the damage, closing the chapter

While day-to-day I have a pretty great quality of life I wouldn’t have believed a year ago and certainly not two years ago, the long-term cancer grief and anxiety have an uncanny, unfortunate parallel to the physical nerve damage I live with.

Like the nerve damage a combination of time and therapies dull the sharpness and severity, even if they aren’t curative.

It’s not entirely unfounded to have the anxiety and the ignored grief coming due with interest, but at this current point they’re entirely unhelpful.

There still isn’t an hour or day I’m not aware. However I don’t let them set my schedule or take more of the time they’ve already unfairly taken.

I could sit and take stock of every cosmic storm weathered. Every dream cratered and asteroid that voided my previous orbits and atmosphere. Every stretch of g-force stress and suffering I hurtled through.

Or I can appreciate with awe how resilient, durable and beautiful life is. Will be. Has been. Can be. Not easily, not always but not impossible.

My stellar revolutions continue vulcanized with each rotation. My normalcy gauge keeps ticking into the green. With the chest port out it feels like the last major milestone of this journey is done. So it finally felt right to write here for what I hope is the last time.

Wishing you health and happiness,

Dave