My Journey With Lymphoma

Getting second-line therapy for Hodgkin’s Lymphoma

After six weeks of chemotherapy, my latest PET-CT scan showed a complete response with no detectable disease 🎉

After the tidal waves of panic and grief that dominate the first weeks of a cancer diagnosis, the challenges of treatment… it was welcome reprieve to finally get good news — it’s gone again.

That good news is the first stop on a long voyage, but a significant harbor I’m grateful to reach.

Getting into treatment, again

Cancer panic is stubborn, stunning and sprawling. At first there is no distraction or tranquilizer.

Cancer grief… of evaporating normalcy, of worrying your loved ones, of putting your life on hold and asking bigger questions about life… it comes in waves like an erratic riptide.

Then at some point you realize the panic has just stopped. You can catch your breath. Your body burned through a keg of adrenaline and there isn’t any left. It’s not courage. It’s nothing resembling content. You’re just cut off somatic-presenting panic for the ephemeral, everyday worry form; the kind you can mentally shove in a closet at-will.

There’s some hiccup panic — shouldn’t I still be panicked? — but the last flares of all-consuming worry burn up.

The grief? It’s like all grief. It never disappears. In infinitesimal ebbing it dulls in sharpness and steps out of the spotlight. Except for fleeting moments, it slowly becomes absorbable and background. It’s an undercurrent that in-time can become undetectable and unremarkable.

Choosing second-line therapy

Chemotherapy cocktails are a balance of short-term risks and discomfort with long-term effectiveness and risks. As a young cancer patient, you want to make aggressive choices with great outcomes, but the risk of secondary cancers and long-term health risks factor in. It’s nauseating before you even get an infusion.

Over two three-week cycles I finished a blend of immunotherapy and chemotherapy called pembro-GVD. In a recent study of relapsed cases of Hodgkin’s Lymphoma, it was found to be highly-effective in cases like mine.

I was fortunate to find it largely tolerable — and effective.

Not without fatigue, not without some challenges including knockdown headaches, taste changes and some less pleasant things. But there were little victories like not needing a single vomit bag I stashed around the house. I didn’t work full days but I was pretty sharp and worked most weekdays. My hair didn’t grow much, but didn’t fall out. It isn’t the suffering I associate with chemo. Even the easiest physical chemo has the mental and logistical hardships of cancer treatment.

The one persistent bit of concern was whether it was working. In 2020 I worried significant suffering might not translate into significant reduction in disease. This summer I worried the lack of suffering could result in lack of significant response. It’s a mind bender.

I buried my head in distractions, slept 10-14 hours a day and did my best to take care of myself.

Gearing up for autologous stem cell transplant

The silent but significant component of “stem cell transplant” is the high-dose chemotherapy.

Yesterday millions of stem cells were harvested from my blood stream and frozen in liquid nitrogen, which in practice is much more boring than it sounds. Tomorrow I start chemo and move into a nearby hospital for a month or two. During chemo and transplant I effectively won’t have an immune system.

I’ll get BEAM chemotherapy that will reset my immune system and hopefully knock out any undetectable or dormant cancer cells. Among other things, it’ll take a toll on my bone marrow in the process, so I’ll get infused with my stem cells at the end of treatment. This transplant will help my marrow recover better and faster than it would on its own.

In the months afterwards I’ll have an new, infant immune system learning fresh how to fight common colds and contagions. I’ll be getting every vaccine I’ve ever had. And I’ll be getting scans to make sure nothing is lighting up again.

Maintenance immunotherapy with something familiar

Three months after my transplant, I’ll start “BV maintenance” immunotherapy infusions every few weeks over the course of 12 months.

So the plan is wipe it out, stomp it out and keep flushing it out in the hopes it never comes back again.

I’ve had brentuximab vedotin before in my BV+AVD chemotherapy in 2020, just never in isolation.

There’s some comfort in knowing BV helped me reach remission from an aggressive and advanced-stage case. There’s some anxiety that one of my invisible injuries from my first chemo — persistent numbness in my fingertips and tenderness in my feet known as peripheral neuropathy — could temporarily or permanently increase.

Signing off until the end of the year

Another year with a chest port. Another year being a cancer patient. The ideas can wear on you more than the reality.

As much as I’m doing pretty well, physically have pretty good energy and this summer went better than I hoped in a best-case scenario… I’m tired. Tired of pokes, tired of waiting and appointment acrobatics, tired of signing medical consents. In general I feel grateful, but I can’t pretend it’s not grating.

Some truths are inextinguishable lights even on the cloudiest nights and overcast days. Like having a wonderful partner, a health plan that mostly works in a mostly-broken healthcare system (mostly full of wonderful, talented and caring people), colleagues that shoulder your responsibilities when you can’t and bring out the best in you when you can. And people that care about you in touching, thoughtful ways. Thank you.

I’ll write again in a few months.

Wishing you health and happiness,