My Journey With Lymphoma

Getting radiation therapy with Hodgkin’s Lymphoma

(Cliff Notes: I’m drained but slowly beginning to feel more human. Scans show treatment is working well and I’m on-track to be “done-done” in the spring. Parts of my 2020 were hellish, but I’m not alone in that group.)

Voracious research has always been my go-to panacea.

In elementary school I developed a deep love for Consumer Reports, CNET and news websites. I memorized the maps of Disney World before we went. As I’ve aged, I explored a career in journalism and when my obsession with charts, maps and storytelling tools overflowed into software engineering, I researched until my hobbyist-level knowledge and skills were professional-grade.

As much as research is something I enjoy, I’ve also found it one of the few effective comforts as I’ve navigated hardships in life. Sometimes research gives us answers, sometimes research gives us only more questions, but I’ve always found the process of groking gratifying and comforting.

So when I was diagnosed with cancer, my primary source of solace were good primary sources. I tapped every resource, authoritative and anecdotal, seeking the answers and questions I would need. I do better with knowing too much than too little.

Despite scouring the NIH, NHS, medical journals, blogs, message boards and speaking with medical professionals and survivors, I never found an unabridged, neatly-organized, step-by-step plan to follow from someone with the exact same diagnosis and drugs I was about to take.

Where is my YouTube how-to or 23-step listicle?
Isn’t this the golden era of niche content?

My adrenaline-fueled thinking before starting treatment

Hindsight has made the answer perfectly clear.

Cancer isn’t well-organized. The highly-personalized chaos is part of what makes it scary. Every cancer, every body reacts differently to treatments. It seems so obvious to say now, but panic can blind you. I was looking for something that didn’t exist because it can’t really exist the way I imagined it.

You might have noticed it’s been a while since I’ve published. Each time I’ve sat to write and click publish in recent months… I just didn’t want to. Or the words wouldn’t come. Or they didn’t feel like me. Or I didn’t feel like me. So I put it off until it felt right.

I decided against memorializing my chemo journey here any further. Empowering the experience with the permanence of words, mile-markers that could later trigger more-vivid recall, isn’t something I wanted. I decided it wouldn’t help me to share the grim details, nor was my journey standard enough to meaningfully help someone else, though I’d certainly be open to talking with someone navigating a similar diagnosis.

So this blog has been intentionally abridged. I’ve been dealing with chemo brain, a “bug” form of forgetting, so I decided to finally take advantage of forgetting as a feature. As much as I enjoy research and think it’s important to feel the spectrum of emotions facts can evoke in us, 2020 also taught me some lessons about the limits of knowing more and the illusion of control it can give us.

As promised, no news has been net-good news. The details worth sharing?

  • I’ve finished my chemo. Over the past six months I had 12 infusions, every two weeks with some of the most powerful and cutting-edge cancer drugs ever invented. I wouldn’t wish the experience on anyone.
  • My second scan two months into chemo showed both a radical, ideal reduction in cancer and no new progression. My blood tests remained quite good in chemo, even when I wasn’t feeling it.
  • Apart from the common walking through coals suffering that comes with chemo, some uncommon and at times intense drug reactions, plus healthcare challenges during a global pandemic… I’ve had a very boring and responsive case thus far.

So, what’s left?

There are three things between now and the end of my current chapter.

  1. In two weeks I get my third PET-CT scan. The results of this scan should fairly definitively say whether I’ve reached NED (cancer lingo for “no evidence of disease”). This means complete remission, but the word cured can’t really be thrown around until I stay in complete remission for a few years.
  2. In late January, regardless of the results of my scan, I begin relatively low-dose radiation therapy. Every weekday for about a month I’ll go in for a 5-10 minute treatment on my neck and shoulder.
  3. Once I’ve received two doses of a COVID-19 vaccine, I’ll schedule the small surgery to remove my chest port.

I wasn’t originally anticipating radiation, but my disease was considered “bulky” based on the dimensions of the growth on my neck. Best practice with bulky disease is to follow up indiscriminate, system-wide chemo with targeted radiation at the origin site. So I’ve elected for 17-20 radiation treatments because it’s the best thing I can do to improve my odds of remaining cancer-free.

Sidebar: Nuclear medicine is a really wild thing. Watching a doctor fly around a high-res, 3D render of my body while talking about how lasers will use that data to guide high-energy beams to disrupt cell replication was about as close to a Star Trek sickbay as I’ve ever been.

I haven’t let myself think too much about what’s after those three things.

Yes, I’ve been dreaming of the day I can eat spicy food and raw vegetables again. Yes, there will be the entertaining games of “what color will my hair grow back?” and “will one eyebrow regrow faster than the other?” to look forward to. Yes, my 2021 isolation plan — like many others — will unfortunately need to remain uncompromising as I will remain quite immunocompromised.

But building back physical strength… taking my brain out of crisis mode… reconnecting with people… revisiting and setting personal and professional goals beyond survive… finding what forward looks like for me in the coming seasons and years… I honestly haven’t committed mental cycles to those and bigger life questions.

In 2020 everything that was already hard got harder. The hardships of isolation jumped on our shoulders too. As harrowing as cancer treatment has been, as hard as it’s been to lose loved ones from afar, I’ve felt privileged and fortunate to have the means to navigate my burden.

I haven’t had to worry about my job, necessities or getting good healthcare. So many people have reached out, on top of their own 2020 dumpster fire, even when I’ve only sporadically been able to reach back out. As much as I retreated and buried my head in the sand to get through 2020, there’s always been fresh footprints on the beach next to me, food on my table and plenty to be grateful for.

I’ll share the results of my scan in a few weeks. I hope your 2021 outlook is looking brighter too, your health is good and you’re hanging in there.