When the Diagnosis Changed Its Name: Finding Clarity in the Gray Zone

October 11, 2025

Photo by Rowan Heuvel on Unsplash

When I was first diagnosed with classical Hodgkin lymphoma, we built a battle plan around that single, known disease. For a while, everything fit together neatly. I had a name for the enemy, and my doctors had a clear map for the campaign.

But even then, something in the pattern resisted neat classification. The cells didn’t behave exactly as expected; they whispered a slightly different truth beneath the microscope’s light. It was the first hint that my body was writing a story the textbooks hadn’t quite prepared us for. NIH even called my Hodgkin’s “difficult,” which, in hindsight, feels like foreshadowing.

Eight months later, the team at Memorial Sloan Kettering (MSK) decided to take another look. This week, they brought my case before what’s called the tumor board, a kind of medical roundtable where hematopathologists, oncologists, and radiologists gather to question assumptions and re-examine every detail.

My case became one of those discussions. They revisited old slides, re-read flow cytometry results, layered new stains over old ones. It was an act of professional humility, the willingness to admit that sometimes, science needs to pause and listen again.

The Geography of the Gray Zone

After a deeper review, the picture shifted. What once looked purely like classic Hodgkin lymphoma began showing signs of something rarer: T-cell–rich large B-cell lymphoma.

Two diseases that usually live in separate worlds now seemed to meet in mine. The MSK specialists called it a hybrid lymphoma, a kind of gray zone where biology refuses to play by our naming conventions. It asked my doctors to step off the beaten path and design a treatment that was uniquely mine.

My old plans did their job and were successful at targeting the Hodgkin's Lymphoma. But to ensure long term success and a potential cure we need a new plan to remove anything else that may be hiding in my body.

Our new plan: Rituximab, a targeted antibody that locks onto the CD20 markers on my B-cells, followed by radiation, and then onward to my stem cell transplant.

What I like about this plan is that I was part of the decision on what to do. There was no “This is the only option." I was given several options and each one was explained to me as were the potential short and long term side effects.

The Asymmetrical Aftermath: A Foot’s Testimony

Most people who experience neuropathy will feel a symmetrical tingling, or pain, in both feet and/or hands. Mine doesn't follow this script.

My left side foot is weaker, slower, dulled. The tibialis anterior, the muscle that lifts the foot, barely fires. I can walk, but it’s a deliberate action. I have to think through each motion: lift the hip, flex the shin, swing the foot forward, land. The simple act of walking has become a mindful one.

That asymmetry caught my doctors’ attention. It’s the second time, this week my body has defied the expected pattern. This time, they suspect something is amiss, perhaps a nerve root compression, spinal inflammation, or an unseen aftereffect of treatment. Next week, I’ll have a spinal tap and MRI to look for answers.

Learning to Walk in the Gray

If this journey has taught me anything, it’s that clarity doesn’t always arrive in black and white. Sometimes it lives in the gray, that space between certainty and mystery, diagnosis and discovery.

The name of my disease has changed, but maybe that was never the most important part. What matters more is how we move through uncertainty, not fighting it, but learning to walk with it.

So for now, I’ll keep doing just that: one mindful, uneven, and deliberate step at a time.