Journal of the Dermatology Nurses' Association
April 2011, Volume 3 Number 2 , p 86 - 87
Special to The Washington PostMonday, January 3, 2011; 11:23 PMThe itching that accompanied the appearance of a splotchy rash along my belt line in 2003 seemed only a minor annoyance at first. My dermatologist was unconcerned. He said the elastic band on my underwear was probably too tight. I sought a second opinion and was told to change my laundry detergent. Those doctors were as clueless as I was.It turned out I had a little-known form of cancer - which understandably became the focus of treatment. After all, who gives much thought to itching? You have an itch, you scratch it, it goes away. So I thought.Soon, however, my itching became chronic, around the clock, deeply rooted, as though a swarm of mosquitoes had chosen me for dinner day after day. I couldn't scratch fast enough. At first my friends laughed when I'd stop on a street to rub my back against a light pole or when my hands were in constant motion at dinner, clawing at unseen tormentors. Then it stopped being funny. As months turned into years, itching became a form of torture, if not exactly pain.Sometimes I would have to excuse myself in restaurants, go into the restroom, drop my pants, take off my shirt and scratch as forcibly as I could with a plastic comb I carried for that purpose. Sometimes I'd pull my car off the road to park and scratch. I slept only fitfully for weeks on end. Occasionally there would be a reprieve and I'd think the worst was over. But the itching would soon return. I had embarked on a seven-year journey that would cost Medicare hundreds of thousands of dollars before the outlines of a resolution came into sight.It took several months of hunting in the Washington area before I found the dermatologist, Todd Perkins, who initially identified what was wrong.In early 2004, he told me I had cutaneous T-cell lymphoma, in which white blood cells called T cells migrate to the skin, causing lesions and eventually forming plaques and tumors. Treatable but not curable, CTCL is slow-growing.