Article previously published in the Cutaneous Lymphoma Foundation's Forum Summer 2013 newsletter.
Even the computer doesn’t recognize Mycosis Fungoides. A wavy red line under it says it is odd, unusual, and not easily recognizable. It is that very fact that makes it imperative for a physician to have those “eagle eyes” that recognize the peculiar kidney bean shape, the cigarette paper thin skin texture, the odd red/brown/purple color. The first two doctors who saw it on my backside didn’t, and so, I dismissed it. “What could that be? Aha, just a rash from yard work, maybe?” I was my own worst enemy. The queen of denial. That was in September of 1990. Life was extremely busy and more important things were happening, and as time passed, the ‘spot’ hadn’t really changed.
In 1993, I ended my career running paint and body shops, moved from Texas to Florida and started a new career in human resources. I even married again. Life was good! That is, until my twin sister became terminal with a constellation of complications from Type II juvenile diabetes.
To spend as much time with my sister as possible, I became a long distance driver from the Florida Panhandle to Austin, Texas on a monthly basis. Truckers likely still talk about “the day that lady came outta that 280Z pulling her pants away from her.” I felt like my skin on my lower back had become a popcorn factory with firecracker kernels. The pain was indescribable, intense, exploding. I have had five more of these episodes in these last years. Extreme stress and heat appear to be the triggering factors. Still, no doctor found my episodes alarming, and they continued to attribute my symptoms to dermatitis and inflamed eczema. Who was I to question them?
In 2003, I was in an auto accident that broke my neck. Over the next three years, that spot grew from a quarter size to the entirety of my backside. By 2008, my spot became the least of my issues. The world tilted in 2008 for me and millions of others who were suddenly faced with losing our jobs and the challenge of finding new employment. We ended up moving to Louisiana, and this was ironically the best move I could have made. Who knew?? Along with the increased stress I was under, my rash continued to grow. It expanded to my breast region, under my right arm and between my legs!! It was the classic “OMG! Go to a doctor NOW!”
I made an appointment with Dr. Michael Cormier, affiliated with Moss Regional Medical Center. Dr. Cormier was a certified “eagle-eye” dermatologist. He is my hero! I knew something wasn’t right by his arched eyebrow. All I heard were the word “biopsy” and something about a cutaneous T-cell lymphoma.
The biopsy proved Dr. Cormier’s suspicions to be true. I had “won” the rare cancer that involved skin and blood…dang! I then transferred to oncologist D. John Gaharan. We tried sunlight, triamcinolone creams and going naked. At 62, that was a hard Rx to take!
I read and learned to dig deeper on words I’d never heard before until the day I bravely typed ‘lymphoma’ in the internet search field. It came back with the National Cancer Institute and contact information for several lymphoma foundations. I left messages with two of them and halfheartedly dialed the Cutaneous Lymphoma Foundation’s number. To my surprise, CEO Susan Thornton answered - from an airport - God does provide miracles! We didn’t “speak,” we talked. She shared information on resources for support and for research. I realized my ignorance had lead to fear. This was my fight, but I quickly realized I had an “army” in my corner!
When no real progress had occurred for a time, my next treatment option was chemo. I was put on Targretin, an oral Bexarotene, at 7 capsules a day. This was an intense dose, but we were attempting to ‘leap frog’ over the advancement of patches. The treatment has some complications to it, and I encountered several. But, I’ve long believed “you can’t make an omelet without breaking some eggs.”
After 7 weeks on 7-75mg a day, I was reduced to 4 capsules. Targretin has worked so very well for me that I wish it would have been considered as a first option. Because of my age and Targretin’s drying effect, I consume a LOT of water for hydration and creams for moisture. But, the huge, ugly, unwomanly patches are fading, my countenance is brightening and I am regaining my life, sometimes in baby steps, but steps forward nonetheless. I took pictures of the before, during, and present. I have proof of the progress in 8x10 glossies!
I attempt to be ALIVE every day. I eat as best as I can, exercise, rest as often as I should, drink my water, limit sun exposure, take my Targretin and laugh out loud at least 4 times a day. I know how very fortunate I am!! I have seen the pictures. LIFE IS GOOD!
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