During my first appointment with a doctor at the City of Hope, I pointed out the crepe-paper like, wrinkly skin surrounding my arm pits. When she quickly dismissed it as "dry skin," I, quite frankly, wanted to jump from the examining table and down her throat. Instead, I sat calmly, thinking that it didn't take a certification in dermatology to see that this weird, crinkled skin had nothing to do with forgetting to apply enough Jergen's skin cream.
Since that first pre-treatment visit, my skin condition has grown progressively worse, especially on my right arm. I'm so self conscious that I've stopped wearing sleeveless tops, even on the hottest days. I'd rather swelter than sag.
I eventually asked my nurse practitioner if she had ever seen anything like it. She concluded that the sagging, crinkly skin was the result of weight and muscle tone loss. I considered this a totally illogical conclusion because the hyper wrinkles preceded the chemo treatment and a ten-pound weight loss is not enough to account for sagging skin that looks like an aging elephant's.
I finally worked up the courage to show my hideous skin to my current, beloved doctor. His conclusion was no more satisfying. He was certain that the condition was not disease-related and implied that it was the result of aging.
Let's recap here: dry skin, weight loss, aging. I just wanted, at the very least, for a medical professional to acknowledge that my disturbing skin condition was not NORMAL.
I consulted with an Arcadia dermatopathologist this afternoon. (I made the appointment weeks ago, on the recommendation of a stranger I met at Wild Oats - a Whole Foods-like store in Pasadena.) As soon as Dr. Chang took a look at my skin, his eyes lit up. "It looks like granulomatous slack skin syndrome," he pronounced.
"Would you like to see a picture of it?" My condition has a name and a picture? This was all too good to be true. He pulled out his weighty dermatological medical text and flipped to the page describing the slack skin syndrome. Sure enough, the photo looked just like my skin. And, drum roll please, the disease is a type of T-cell lymphoma.
It's no wonder that none of the other medical professionals had a clue about this. According to the medical text, there are just 30 documented cases. (Apparently, a few more cases have been cited since the medical book was written. A quick Google search shows the number at nearly 50 now.) Dr. Chang could barely contain himself. "This is one for the textbooks," he said with glee.
I love his pull-the-pieces-of-the-puzzle-together approach. He wants the year-old slides of the punch biopsy taken by my first dermatologist. The biopsy was taken from what I call the "raised islands" in an area that now sports the wrinkly skin. He also wants copies of the torso photos taken by an ocular surgeon so that he can compare pre- and post-chemo conditions. (I didn't realize it until looking at the doctor's digital photos, but the slack skin has spread to my back torso.) I've made an appointment for him to do a skin biopsy on Monday, July 16.
At this point, I'm not sure how all of this relates to my mantle cell lymphoma (MCL) because MCL is a cancer of the B cells, and the slack skin is a disease of the T cells. I'm just thrilled to finally have a logical explanation and hope for treatment.
(My skin might be a slacker, but I'm not!)
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