My Journey with Sézary Syndrome

One man’s experience with a rare cancer — diagnosis, treatment, and the road ahead.

I started this site to keep an honest record of what it is like to live through a diagnosis most people have never heard of. Sézary syndrome is rare, and when I began trying to understand what was happening to me, I found plenty of medical information but far fewer accounts of the experience from the patient’s side.

This is that side of the story: the tests and scans, the doctors and decisions, the treatments, the uncertainty, the ordinary days in between, and the people sharing the road with me. I’m writing it partly so I can remember what happened and partly in the hope that another patient or family may someday find something here that helps them feel a little better informed and a little less alone.

I don’t intend to turn this into an inspirational version of events. Some days may be encouraging. Others may be frightening, frustrating, funny, confusing, or simply mundane. I want to record them as they actually happen.

Where to begin

Use these sections to follow the story from the beginning, understand the disease and treatment, or keep up with what is happening now.

My Story

How this began, what eventually led to the diagnosis, and how my understanding of the disease changed along the way.

Journal

The ongoing first-person record: appointments, treatments, symptoms, decisions, setbacks, good days, bad days, and everyday life between them.

Treatment Timeline

A concise chronology of the major milestones—from the early search for answers through diagnosis, staging, treatment, and transplant evaluation and decision-making.

Understanding Sézary Syndrome

What I’ve learned about this uncommon form of cutaneous T-cell lymphoma, explained from a patient’s perspective and separated from my personal journal.

Treatment

A record of the therapies I’m offered, the choices I make, how treatment actually feels, and what happens next.

Transplant

My evaluation and decision-making around allogeneic stem-cell transplant, including the preparation, risks, uncertainties, and—if I reach it—the experience itself.

Photos

A visual record of the journey, including changes that are difficult to describe adequately in words.

Newly Diagnosed? Start Here.

A place for the things I wish I had known at the beginning: questions to consider, terms I had to learn, and practical lessons from my own experience.