Living with Lymphoma

She became so much more than her diagnosis

“I was 32 when I was diagnosed,” recalls Susan Thornton about the day she learned she had lymphoma, a cancer that originates in the lymphatic system. “This type of cancer is most common in black men over age 60 and there I was, a young white woman. I didn’t fit the typical profile at all. What’s more, my first symptom was only a mild itchy rash around my waist. It was misdiagnosed by several dermatologists who prescribed various topical medications which didn’t help. Then I saw a dermatologist who had studied under one of the premier researchers in this disease. She took a biopsy of my skin and referred me to her mentor. I was diagnosed with Stage I cutaneous T- cell lymphoma. My prognosis was very good. Still, it was petrifying. It was one of those moments in your life when you remember exactly where you were and can flash back on the memory at any point. I was sitting with my mother in the office of this wonderful grandfatherly doctor, and he was saying, ‘Well, it’s not curable, but it’s treatable. We will manage it the best we can. The only way to cure this disease is with a bone marrow transplant but hopefully, you will never get to that point.’”

Thornton, who lives in Pottstown, Penn., began working with her doctor to manage her cancer. She tried ultraviolet A light exposure combined with a chemotherapy drug, topical steroids, and intravenous chemotherapy agents. For four years or so, she stayed pretty healthy. Then, in the late 1990s, her cancer got more aggressive.

“I developed tumors all over my face, head and body,” she recalls. “I didn’t sleep well for about two years. In addition to these nasty, ugly lesions, the disease caused an intense itching that is more intolerable than the worst poison ivy you can ever imagine.”

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