Tuesday, July 10, 2007

I'm a rarer bird than I thought.

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!)


Paula Johnson said...

I'm glad you kept on this. Aging is one thing, but your situation was a bit odd.

I know you'll be gracious when you next see Dr. Foreman, but doesn't a small part of you want to race into his office shouting "Nanner, nanner, nanner, I have 'granulomatous slack skin syndrome'!"

No? Maybe it's just me.

Susan Carrier said...

Oh, don't you know it. I asked Dr. Chang for a copy of the description from the dermatological medical text book so that I could flaunt . . .er share it.

Karen said...

What a great doctor Dr. Chang is. I'd never heard of a dermatopathologist, but obviously this one knows what he's doing. I love your description of him - his eyes lighting up, his saying "Would you like to see a picture of it?" Right now I'm reading a remarkable book called Kafka on the Shore by Haruki Murakami (I expect him to win a Nobel Prize any day now). The scene could have come right out of one of his books!

But, of course, we all knew you were a rare bird! Pretty amazing sleuthing.

SAMO Calling said...

FRIGGIN' AMAZING! I love how you just know when to keep on it. While you may not have studied medicine, you certainly know your body better than any doctor.What luck to find the "doctor in the haystack" who knew what was going on. It's kind of cute that you presented him a case that could excite only a doctor.
Your perserverance comes through yet again Susan. YOU ARE the poster child for self-help.

suzy keleher said...

Wow! I am so glad you had the friendliness to strike up a conversation in Wild Oats and then get THAT doctor! It is so true, we have to be so proactive with our own healthcare... even the best docs of the best cannot know everything. You are amazing, Susan! Love you, Suze

Mathews Family said...

I'd like to hear the story behind how you got to talking about saggy skin with the stranger at Wild Oats :)

Lilli said...

Whoa! That's exactly what I said right out loud. The dog is wondering why I'm so animated. What an amazing story, and to find the doc who knew exactly what it was.

I've said it before and I'll say it again, wordy person that I am: You go girl!

And you go right on to tell those docs at CoH all about it. You'll be doing a public service while in service to yourself. Which just goes to show, it is always worthwhile to ask, ask, ask.

Susan Carrier said...

Karen, that book you're reading sounds great.

Em, I was talking with the sales rep. at Wild Oats about homeopathic meds for raising blood counts. Then I asked her if she could recommend anything for my strange skin condition.

A woman I'd been chatting with overheard the conversation and very politely interrupted us to recommend the dermatologist. She didn't have his number with her, but called me back with it later in the day. I was so excited when I did a little Google search on him and found that, in addition to his private practice, he reviews unknown histopathology biopsy slides with residents at the USC Keck School of Medicine. This guy loves a good mystery. He really IS the "doctor in the haystack."

denise said...

Okay. I googled "Slack Skin Syndrome" and what did I find? There you were in the search under your blog. Cyberspace is scary!!!!!

Susan Carrier said...

As long as the hideous photos that my dermatologist took don't end up on the web!

I don't want to become the poster gal for GSS. I talked with my former dermatologist today because I need to get copies of biopsy slides. She also was so tintilated to hear about the diagnosis and wants me to drop in and see her when I pick up the slides.

She also wants the slides back so that she can resend them to the UCLA lab that did the original biopsy.

Anonymous said...

Just was reading about one girl with this disease who was advised to check out www.rarediseases.org -- maybe an idea --

Lisa C.

Susan Carrier said...

Ugh - I read that same case study of the girl. Now that was one confounding case!

Anonymous said...

I know! And the doctors just sounded all amazed by the girl's symptoms - well, it sounds like one of the more extreme cases, right?

Lisa C.