I was diagnosed with lymphoma in January and it has been an uncertain journey since then. I’m still unsure of what lymphoma means to me. Because I haven’t been able to answer this question, I have been reticent to share my diagnosis with others. Am I a cancer “victim?” Does cancer define me? Should I be advocating for lymphoma care and awareness this September? I’m far from the first person to grapple with a cancer diagnosis, but this month I am compelled to finally share my lymphoma diagnosis story.
I want to claim my own story, before cancer does. My 3-year-old daughter fell asleep on a long car ride home–from where I can’t remember. As soon as I saw her eyes closed in the rear view mirror I switched off Disney Radio and scrolled through the talk radio stations, finally landing on Doctor Radio. On that particular day, the doctors were discussing lymphoma rashes–persistent, unexplained and egregious rashes. “Ughhh,” I thought. I really should see another doctor to check on the unusual patches of skin on my abdomen. While it was nothing like what these doctors were describing it was a good reminder of how serious skin conditions can become.
At my next dermatologist visit, I brought the patches up again with my dermatologist. I explained that I had them since I was a teenager and they had remained relatively unchanged for a decade. Other than occasional itching, they were only a cosmetic nuisance. My dermatologist took a closer look. He suspected it was morphea, a rare skin condition that brings on discolored patches of skin. “I’m just going to biopsy it to be sure,” he said. At least this was a new explanation.
A dozen doctors, including dermatologists and oncologists, had examined the patches over the past 10 years, speculating that it was everything from a scar to eczema or mild psoriasis. He called me back to his office about a week later and said he needed to repeat the biopsy. The skin tissue was not positive for morphea, but some of the cells raised a red flag. He explained there was a remote possibility that it was a kind of rare skin cancer, “but not like any skin cancer you’ve ever heard of before.” What kind of skin cancer? Mycosis fungoides, a form of cancer that accounts for less than 2% of non-Hodgkin lymphomas. How rare? There are only about 2,000 new cases diagnosed a year in the U.S., and most of them are in older males.
I am a 29-year-old female. I got the results of the second biopsy on January 5, 2019. The doctor called as my husband and I were parking outside of our favorite Italian restaurant for a date night. To my family and doctors’ disbelief, my seemingly benign skin patches were cancerous lesions, a presentation of cutaneous T-cell lymphoma (CTCL). That was the beginning of my lymphoma story–the first pages of the first chapter. So much has happened since then, but it is still hard to share, even months later. I don’t know what happens next in this story. But this Lymphoma Awareness Month I want to share my diagnosis and my story on my terms–not cancer’s terms.
Hollis
Lymphoma survivor
