Some parts of this disease are easier to show than to describe.
I began photographing changes in my skin before I knew exactly what they meant. Over time those pictures became part of the medical record I carried to appointments. They also became a remarkably direct record of how the disease changed from week to week and month to month.
This gallery includes selected photographs of the rash and other visible symptoms, treatment-related changes and recovery. It also includes photographs of ordinary life—the people, places and moments that remind me that this journey is about much more than what cancer does to the body.
How the photographs are organized
- Before diagnosis
- Diagnosis and staging
- Treatment
- Skin changes over time
- Transplant preparation and recovery, if I proceed
- Life between the medical appointments
I add photographs carefully and with dates whenever possible so that they remain useful as a visual chronology rather than simply a collection of images.
Skin changes before diagnosis
These photographs document what my skin looked like during the months leading up to my diagnosis. They are included as part of my own visual record and are not intended to diagnose anyone else.
First treatment and hospital stay
My first mogamulizumab treatment became more eventful than I expected. These photographs follow the first infusion, the reaction during treatment, the return to the urgent symptoms clinic the next day, the hospital stay that followed, and finally going home.
