Putnam County, NY
Article previously published in the Cutaneous Lymphoma Foundation's Forum Summer 2011 newsletter.
As a psychologist by profession and a researcher by nature, in an average day, I probably Google at least thirty topics. I didn’t Google at all, though, after a biopsy suggested I had mycosis fungoides (MF), the most common type of cutaneous T-cell lymphoma (CTCL), until I was definitively diagnosed a month later. I knew that if I found something frightening, I would get lost in the “what ifs.” So, to manage my fear, I asked my husband, Bob, as well as a close friend to sift information and tell me what I needed to know – especially anything reassuring.
They quickly found and relied on the Cutaneous Lymphoma Foundation website for clear, authoritative facts, introducing me to a community that remains an important source of information and support.
A cancer diagnosis was the last thing I expected in August 2010 when I went to the fourth dermatologist, looking for something to clear my persistent rashes. Over several years, doctors had thought my two slowly spreading rashes to be anything from a recurrence of eczema, to an allergy, to ringworm. None of the prescription creams made the slightest difference, and I had resigned myself to living with these rashes. After seeing a women’s magazine skin care article with a photo of a rash resembling mine (which was not MF), I found the fourth dermatologist – Dr. Yolanda Cestero, with an office in Westchester County, north of New York City. She suggested a biopsy, an abrupt change of direction. Three weeks later, when she told me it seemed I had something called mycosis fungoides, my first thought was, “Oh, so it’s a fungus. Good, she’ll prescribe a fungus cream and I’ll get rid of it.” Her next words, “It’s a form of cancer,” made my heart stop. I was only slightly reassured when she told me, “You will be fine but you must be treated.”
Dr. Cestero, who’s affiliated with Memorial Sloan-Kettering Cancer Center in Manhattan, referred me to two specialists there – Dr. Patricia Myskowski, a dermatological immunologist, and Dr. Steven Horwitz, an oncologist who treats lymphoma. I spent a rough month awaiting the day of my appointment, September 23, 2010. To make it through, I drew on everything I knew about stress management, and on prayer. I only resumed breathing when they told me I could expect a normal, productive lifespan. Drs. Myskowski and Horwitz work as a well-coordinated team, and I feel I am in the best of hands.
For my condition, which is between stage 1A and 1B, the doctors prescribe a corticosteroid cream called Clobetasol proprionate. The rashes cleared after several months of applying it twice daily. Splotches occasionally show up in new areas, leading my husband to joke, “the cancer is on the run.”
I return to Memorial Sloan-Kettering for evaluation every four months and live without restrictions. I see myself as the same person I was before, with plenty of life ahead. I have a Honda that shows 135,000 miles on the odometer. I expect to drive it a lot longer, but it requires maintenance. If you have the privilege of living a certain number of years, you will require maintenance, just like my Honda. I like to view this as part of my maintenance. There’s no guarantee the cancer won’t advance, but the odds are very good and that sustains optimism.
Inevitably, my outlook has changed – in a positive way. The diagnosis has been really mobilizing, a push to think how I’ll fill the rest of my life with the most meaning. I’m more careful with those I love. I’ve gotten serious about a couple of important projects that I’d been putting off. Bob and I are talking about returning to Italy, where we celebrated an anniversary two years ago, to watch a vintage car race next May.
I’ve drawn on my training as a psychologist to get through the diagnosis and everyday living with cutaneous lymphoma. I use relaxation and stress management techniques and focus on those things I can control, instead of allowing myself to dwell on the “what ifs.” Reaching out to family and friends is incredibly helpful, as is helping others. I have been focusing, also, on making better choices about the chemicals that go on and in my body. I’m nourishing myself well, choosing organic foods when possible. I’ve been experimenting with making “home brew” skin cream, using organic, non-toxic and healing ingredients, and this has made a big difference in supporting my skin and controlling itching and flaking. These are things I can control and the sense that I’m doing something positive helps enormously.
I also rely on the CTCL-MF Listserv, which my doctors recommended as a constructive resource. In a world where it seems no one has heard of cutaneous lymphoma, it was an enormous relief and inspiration to find others coping with the diagnosis. I check discussion list e-mails for patient updates, treatment comments and news from clinical trials. I’ve established an email friendship with a woman from the listserv who lives on Long Island, and we hope to meet at some point. Susan Thornton, the Cutaneous Lymphoma Foundation’s new Management Consultant for Programs and Services*, who is also a longtime Foundation friend and supporter, also has been very helpful and reassuring. The Foundation is a vital resource and, like many others, I feel moved to help support its work. As a next step, I hope to attend the Foundation’s Patient Education Forum in New Orleans this October – a good reason for a fall trip.
*Susan Thornton became the Chief Executive Officer of the Cutaneous Lymphoma Foundation in 2012.
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