New York, NY
Article previously published in the Cutaneous Lymphoma Foundation's Forum Fall 2011 newsletter.
I recently wrote a new will. I have no children, no husband, no brothers or sisters, and my parents have passed away. After many years of pondering about who and what is important to me, I went to my lawyer’s office earlier this year in May with an important decision. But, I’m getting ahead of myself.
This all began in 2003. I had no idea what “CTCL” meant, but my dermatologist, Dr. Peter Lombardo, had a suspicion about a stubborn rash on my behind and sent in a biopsy with the instruction to the pathologist to “rule out CTCL.” The report came back inconclusive; but I’ll never forget my doctor sitting me down in his office and solemnly saying, “You must have this test repeated next year.”
Well, I procrastinated. How important could this CTCL be? But, by 2005, my stubborn rash could not be ignored; the ointments and creams could not hold it back, and it had spread to my face, thighs, chest and, of course, that infamous swim suit area. I Googled CTCL – oops: Lymphoma? T-cells? This time my biopsy was unequivocal: patch stage mycosis fungoides (MF). Stage IB.
We have all been there: CTCL is rare and only a few specialists in the country really know this disease backwards and forwards. Luckily for me, I live in Greenwich Village and I was only a taxi ride away from one of the world’s recognized authorities at NYU Langone Medical Center, Dr. David L. Ramsay. He didn’t take my insurance, but I had Googled pictures of mycosis fungoides by that time, and I had seen the worst – and I was scared. So, I took my checkbook. All by myself. He confirmed my diagnosis.
Night after night I was on the Internet searching for facts. I found the Cutaneous Lymphoma Foundation (then the Mycosis Fungoides Foundation), and I combed the archives. I found Judy Jones. I joined the CTCL-MF Listserv. I wasn’t alone.
After a few truly stupid letters from my insurance company, my primary care physician stepped in, and I eventually got on a train to New Haven, CT, two hours away, and saw my in-network doctor, Dr. Peter W. Heald, one of the world’s best at Yale New Haven Medical Center. Another confirmation of MF and this time a treatment plan: narrowband UVB three times a week. Within three months it was clear: the lights were working. “Do you know how great this is?” Dr. Heald said. I was able to exhale for the first time. But, I basically exhaled alone. I was afraid to tell my friends I had cancer, afraid they would pull away, or just feel awkward and not really understand.
I attended every patient seminar held in New York. I met Judy. I would email her every now and again when I was alerted to a press release from a drug company that had just completed a new trial or a new study was published with promising results. She always answered me back with such reassurance: yes, she had just attended a meeting in Europe and was working with researchers and, yes, she knew about this new drug in the pipeline and had testified about it to the FDA. I felt a gratitude that I had never experienced before. I was in awe of her dedication and ambition for us. My aloneness was feeling way less lonely.
Mine wasn’t a recovery without setbacks: a stubborn patch on my right ankle resisted the scorched earth attack of Targretin gel. So I opted for 19 radiation treatments at Beth Israel Hospital, a few blocks away. It was there in the waiting room with other patients undergoing radiation that the seriousness of this disease was brought home. You have cancer, kid. Cross your fingers that this treatment works. By this time I’d also met several people on the listserv and we exchanged emails every few days. We became friends. We met. I saw the disease through their eyes. And through the eyes of their doctors.
Two of my friends didn’t make it. They died of MF. I grieved and I was angry. Why hadn’t their disease been diagnosed sooner? What was wrong with medical textbooks that called this disease indolent, lulling doctors into complacency when my two friends were gone because their MF had gone berserk?
For about 3 years, my skin has been basically clear. And my NB-UVB treatments have been scaled back to two a month. I read the listserv every night. I’ve torn up my old and irrelevant will and signed a new one. It expresses my need to do something good for my fellow patients and my desire to further the work that Judy has started and continues to do so admirably on our behalf as our international ambassador. I’ve made a very generous provision for the Cutaneous Lymphoma Foundation in hopes that, if I get hit by a bus tomorrow, Judy, the staff and the Board of Directors will put it to good and wise use wherever it is needed most. And my gratitude will become more than just words.
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