Kansas City, MO
Article previously published in the Cutaneous Lymphoma Foundation's Forum Winter 2012 newsletter.
Gathering information, evaluating facts and interpreting those facts are essential functions of my work as an attorney. But when it came to learning about my own skin rash diagnosis, I was unprepared, unnerved and very scared at first.
After a 2003 biopsy of inflamed skin samples confirmed mycosis fungoides, a form of cutaneous T cell lymphoma (CTCL), my wife Patty and I naturally jumped on the Internet. Big mistake! Random searching can be the worst way to start. We found distressing pictures and alarming stories, but initially not reassurance about a non-fatal diagnosis that is manageable.
So it was a huge relief to see more even handed information from respected medical websites and then the Cutaneous Lymphoma Foundation when we looked for treatment options. The outstanding CTCL-MF Listserv, promoted by the Foundation, showed fellow patients’ real life experiences and brought me into a supportive online community. During those early months after my diagnosis, Judy Jones’ compassionate insights gave me hope and understanding that I also could tackle this head on.
Symptoms originally had appeared about five years earlier in the form of red, scaly patches under my arms and along my belt line. Several dermatologists unsuccessfully tried basic treatments for psoriasis and eczema before Dr. David O’Connell of suburban Kansas City suggested the biopsy that identified the condition.
Difficult news Hearing “lymphoma” eight years ago at age 38 was a shock. The “C-word” scared me more than anything before. My dad had died from cancer in 2000, one of my closest friends died of an aggressive cancer in 2001 and my mother was struggling with chemotherapy treatments for her lung cancer. She eventually passed in 2004. Other family members had received cancer diagnoses, but none with the rare type I have. And my children were just 6 and 3 then.
Though his diagnosis was a key contribution to my care, Dr. O’Connell wasn’t equipped to treat CTCL so I started seeing another top dermatologist in the area. The treatment worked for several years, though the side effects really inhibited me on treatment days and a 45-minute, one-way drive cut into business time significantly. So when red spots reappeared this year, I was ready for something different and less disruptive.
The Cutaneous Lymphoma Foundation came through again. It held a patient education forum in Kansas City this past September, just a half mile from the downtown law firm where I’m one of three partners. One of the presenters, Dr. Daniel Aires, is director of dermatology at the University of Kansas Cancer Center. He has written and lectured about skin cancer, and treated CTCL in his own father – all of which really impressed me.
Different UV therapy
We spoke during breaks at the forum and Dr. Aires got me into his office soon afterward. My new treatment – the same one Dr. Aires used with his dad – involves UVB narrowband light therapy and Targretin® gel, a topical retinoid. I go three mornings a week and feel fine because there’s no nausea or fatigue – unlike with Psoralen capsules. Having to leave on the slippery Targretin® and Desonide cream, a corticosteroid, is the only drawback but I am certainly not complaining!
I live a full, active life that includes spinning and weight workouts at a gym, as well as coaching my 11 year old daughter’s basketball team and 14 year old son’s baseball team. We love family ski vacations in Park City, Utah, and beach vacations to Mexico or Florida.
This journey has brought a deeper appreciation of my parents’ unbelievable strength while suffering through medical adversity and a closer understanding of what they went through. Their perseverance and positive outlook, and my wife’s tremendous love, support and patience have guided my personal journey with this disease. Although not a strongly spiritual person, I know that support and prayers from friends and family members contribute to my positive outlook. I also firmly believe that the anointing of the sick sacrament I received from our Catholic priest guided me spiritually, psychologically and emotionally through initial dark days of unknowns and self-pity. My medical outlook remains promising and my personal perspective is that “every day is the gift of a new day” – a cliché that I know is a true and guiding mantra. Though I’m just 46 and expect to be around a long while, we’ve expedited things we want to do as a family – such as a three week trip through Europe next summer.
After the Kansas City patient forum connected me with an excellent new doctor and medical team, I realized that I’ve been blessed and that it is time to start giving back by becoming more involved in the Cutaneous Lymphoma Foundation’s advocacy work and perhaps joining the board of directors. Every day is indeed a new opportunity to embrace life and share the gifts granted to me.
If you would like to share your story, fill out this simple online form and a Foundation representative will be in touch with you soon to discuss next steps.
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