Article previously published in the Cutaneous Lymphoma Foundation's Forum Summer 2011 newsletter.
I enjoy deep dive research into unfamiliar topics, but I never expected the compellingly personal project that began four years ago.
As a high school special education teacher for 17 years and now a part-time master’s degree student, I value discovering information, finding reliable sources and evaluating information. And now that I’m the research subject, there’s nothing academic about understanding my cutaneous T-cell lymphoma (CTCL).
The first lesson was what I thought was a mild eczema condition that showed up on my torso turned out to provide a break. It gave a head-start on my journey with CTCL because I already had a longtime dermatologist for various minor dermatological issues over the years. So when a couple of itchy red spots stayed on my torso, I went back to Dr. Mark Bechtel, Director of Dermatology at the Ohio State University Medical Center. His physician’s assistant initially suspected an eczema flare-up and prescribed a cream. I returned in three weeks when the odd patches had grown beyond the original diameter of two to three inches, and that’s when Dr. Bechtel took samples for a biopsy – my first sign of something serious.
The learning curve got steeper a week later as he delivered news that was scary at first. I thought, “What in the world is cutaneous T-cell lymphoma?” I had never heard of it and my parents confirmed no one in our family had this rare disease. To find out more, I started at the Cutaneous Lymphoma Foundation website, which I was steered to by a flyer at my doctor’s office. That was helpful preparation for the first visit to the advanced specialist he recommended.
Dr. Pierluigi Porcu, Associate Professor of Internal Medicine, Division of Hematology, Ohio State University Comprehensive Cancer Center, explained that I have Stage IA non-Hodgkin lymphoma -- “not the major league version,” he reassured me. It’s just on the skin, not blood-borne or in the lymph nodes. I’m thankful for that as well as lesson number two: Living in Columbus, my hometown, brings access to nationally prominent CTCL clinical studies and treatment programs.
The other half of my care team is Dr. Henry Wong, Associate Professor, Dermatology, Ohio State University Comprehensive Cancer Center. He and Dr. Porcu direct a multidisciplinary CTCL clinic and they, along with Dr. Bechtel, coordinated my treatment, which began with ultraviolet light therapy known as narrowband UVB. Two or three times a week for three months, I stood in what I call “the box” – sort of like an upright tanning booth – for full-body exposure designed to slow the unwelcome skin cells’ growth. The slightly raised patches, called plaques, almost disappeared.
When they began returning, I was switched to a prescription gel called Targretin, applied nightly for about six months. It burns quite a bit, but it works and is needed only occasionally now. The patches were essentially gone, but they have come back twice – apparently aggravated by stress. Otherwise, I just go for a checkup every six months.
Support also comes from the Cutaneous Lymphoma Foundation, which has clear information that educated me and eased early anxiety. In 2007, soon after I suddenly entered this unknown area, I participated in two teleconferences. It was reassuring to hear Judy Jones, a patient and founder, give perspective about the many different stages of CTCL. In the second teleconference, I heard Dr. Porcu after having met him, which reinforced that I’m in the right hands.
Blood tests are still negative and my disease is pretty mild, though the doctors don’t minimize the situation. I won’t ask again about remission, a word they don’t use. This thing will always be inside me, so I’m more determined to live well and do my part to help researchers.
I enjoy spending time with family and friends as well as hiking, biking and enjoying wildlife. I also have a lot of interest in teaching about health and wellness as a Personal Trainer, and I serve as an EMT under a physician for high school athletics. I also enjoy watching college basketball and football along with NASCAR. Last year I tried zip-lining in southern Ohio, and this year I took my first two foreign trips to see a school and friends in Honduras and my brother and sister-in-law in Italy during a break from their Air Force service in Afghanistan.
I began social work studies at Ohio State this summer to earn a master’s degree in 2014. I’d like to work in hospitals, at least on a part-time basis, especially now that I know amazing things happen there. My heart still wants to continue to work with students in a school setting as a teacher or social worker or even possibly in a private practice someday. At 44, I’m looking forward to using my new knowledge for my current career as a teacher as well as having it open up new doors for me both professionally and personally.
Also, importantly, my faith in Christ has given me strength and confidence as I faced the adversity in my life. Like the drivers I cheer during NASCAR races, I’m ready for whatever turns and tests the road ahead brings.
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