My Journey With Lymphoma

Getting chemotherapy treatment with Hodgkin’s Lymphoma

Now boarding

Mindfulness and meditation have long been haphazard practices in my life.

If humans have a supernatural power, it’s the ability to willfully adjust our emotions, reactions and outlook. Often much easier said (or recommended) than done, but like anything practice helps with incremental improvement. In recent weeks, I’ve hardly mastered mindfulness and meditation, but they are more deliberate and consistent parts of my routine.

I was never a fearful flier, but for a long time I hated flying.

The stresses and discomforts got to me. It could have something to do with a few too many cross-country red eye flights or perhaps just the hundred common indignities endured with US domestic air travel.

But over the past few years, something changed.

Between work and personal travel, last year I boarded roughly five dozen planes. I found coping mechanisms, little hacks and comfort in the routines. I developed patience and resolve. I chose to have a good attitude. Getting occasional seat upgrades and lounge access didn’t hurt.

Eventually delays, lines, cramped seats, boredom, mediocre food, making tight connections and airport security became manageable. I made friends with boarding agents, food servers and flight attendants in Phoenix and hubs I traveled through commonly.

Chemo will never be comfortable or something I look forward to. I’d take a tiny square of the grungy floor at a jam-packed LAX terminal over chemo any day.

But like flying, chemo isn’t about the journey itself, it’s about the destination. The journey can be made more manageable with a good attitude, embracing predictable routines and a degree of surrender to the process.

Picking a treatment option

In the US, almost every medical treatment comes with a degree of choice.

Where you receive care, from whom, when and sometimes even what the care is and isn’t.

Practically, many of these “choices” are largely illusions.

In-or-out of network care, cost, availability and access all significantly limit choice. And this is all before our healthcare system became overwhelmed by COVID-19.

I’m fortunate that treating Hodgkin’s Lymphoma is a pretty well-traveled, clear treatment path. There aren’t surgeries to remove the cancer and unless the cancer is really persistent in one location, radiation is rarely used.

The one substantial choice I’ve made is to take a “secondary” treatment path. My treatment was FDA-approved in 2018 — it’s not “experimental” — however, it’s not the primary regimen for treating Hodgkin’s Lymphoma.

The primary regimen for Hodgkin’s lymphoma is a four-drug cocktail called ABVD. First introduced in the 1970’s, ABVD revolutionized Hodgkin’s treatment and treatment outcomes.

However, while the B-drug (bleomycin or “bleo”), is effective at eradicating Hodgkin’s, it also comes with some risk of dangerous side-effects. The majority of people don’t experience them, but the minority isn’t a small number and risk for serious lung damage both during treatment and long after taking bleo are frightening. With a personal history of asthma and a dangerous virus that affects lungs floating around, bleo toxicity was one of my primary concerns.

In 2018, a drug called brentuximab vedotin, originally used for reoccurring cases of Hodgkin’s, was approved for use in first-time, advanced cases like mine. In A+AVD, brentuximab takes the place of bleomycin.

In consultation with my doctors, I elected for A+AVD after reviewing a study from The New England Journal of Medicine that showed better treatment outcomes and reduced side-effects with A+AVD over ABVD.

Unlike bleo, brentuximab is a more targeted therapy. It primarily targets a cancer biomarker on unhealthy cells instead of targeting all cells indiscriminately. It comes with it’s own side-effects both during treatment and afterwards, but they’re substantially lower risks and more manageable ones.

It’s not easy to deviate from the norm, especially when the norm has such a high success rate. It’s admittedly a calculated gamble to try a new treatment path with less data on long-term side effects.

However, I’m enormously grateful that I was guided to a statistically safer and more effective treatment. It could make a real difference in my long-term health.

I’ve started treatment

Last week I did my first round of chemo. The experience itself was simultaneously unnerving and entirely uneventful.

In treatment, I spend about four hours with an IV line into my chest port.

Originally I wasn’t thrilled on the chest port idea, but I’m grateful I have it. The surgeon who put it in did excellent work and the port makes the chemo delivery substantially safer and easier.

Some of my drugs are manually injected by a nurse, some are delivered by an infusion pump. I go back 24 hours afterwards for a shot to keep my white blood cell counts up and repeat the process every two weeks like clockwork.

Sitting in the chemo chair, I’ve decided isn’t unlike flying first class. You’re basically stuck sitting for a few hours in a moderately comfortable chair with someone who tries to make an unpleasant experience as comfortable as possible.

On planes, I’ve found closing my eyes and putting on noise-canceling headphones makes a world of difference for when I land. On the plane there’s wind noise and crew announcements, in the chemo room it’s noisy pumps and snoring neighbors (maybe in that regard, they aren’t so different). Either way, I’ve decided chemo days are just another unavoidable travel day towards a destination I’d like to get to.

Going from zero medications in my body to nearly a dozen has been an adjustment. You read and hear about what to prepare yourself for, but there really is little preparing yourself for the revolving door of side effects. The chemo treatment may be unnerving, but the real challenge is navigating the draining, painful and frustrating side effects in-between treatments.

Accepting your body as it is in chemo is a hard pill to swallow. Between fatigue, nausea, taste changes, brain fog, 36 hours of intermittent but persistent hiccups, jaw pain and other symptoms, I’ve had to reset my expectations this week on what is realistic. I’ve needed to listen to my body, even when I don’t like what I’m hearing.

Perhaps the hardest part, is not yet knowing what will get easier, what will be the same and what will get more difficult or unpredictable in subsequent treatments.

On the positive side, near-all visible trace of my cancer is gone. At this point my neck has mostly returned to normal size and shape. This reward has made the side effects feel worth it. Catching my reflection in the mirror isn’t so alarming anymore.

They’re not going to be easy travel days, but I’m glad to finally be en-route to better health.

Signing off for now

This is the point in this story where I now have very little to share. Between now and early 2021, I do chemo every two weeks. I’m going to be taking each day, each treatment as I go to adjust. Until I get additional scans and so long as I don’t get sick or have serious side effects… there isn’t much to say other than “no news is good news.”

Getting to this point has been hard and I didn’t make it here on my own.

My husband, my loved ones and my coworkers have been so kind, supportive and helpful. I’ve had the help of dozens of medical professionals, Amazon and food delivery drivers and countless phone service agents. Plus kind messages from so many thoughtful people.

There are two important kinds of humbling we (hopefully) go through in life: discovering how we see ourselves and discovering how others see us.

While cancer is fairly high on my list of big life challenges, I’m not sure it’s earned top spot just yet. However, I am sure it’s the largest dose of humbling I’ve ever received — of both kinds.

With all my love and gratitude: Thank you.

I should be getting new PET scans around September showing how well treatment is working, I’ll try to check in then. Hope you and yours are staying healthy, sane and masked in public places.

❤️ Dave