I’m half-tempted to put down yesterday’s new NYT Magazine feature on crazy sexy cancer goddess Kris Carr. Her blog was one of the first I found when I started ML, and it was the most popular link on my fledgling site until I pulled it, fearful of somehow sponsoring a too-alternative oncology perspective.
But I give Carr credit, sincerely: Crazy Sexy Cancer is a lot more appealing a title than, say, Medical Lessons. I’d read CSC, for sure, if I had a new diagnosis or, maybe, if I were alone and bored or suffering from a condition like chronic fatigue syndrome or insomnia and hadn’t gone to med school. Even for people who really have cancer, letting loose and being attractive sounds, well, like a lot of fun.
Kris Carr has played her C-card like a Queen of Diamonds. You go, girl!
So this morning I pulled a hard-cover edition of Cancer: Principles and Practice of Oncology, 7th Edition (2005; Lippincott, Williams & Wilkins; edited by DeVita, Hellman and Rosenberg) off my shelf and looked up Carr’s stated disease, epithelioid hemangioendothelioma. Being the old-fashioned woman that I am, I read about EH* in print. Only then did I discover a handy, unopened CD housed inside the cover of the “oncology bible,” as we used to call this text.
DeVita and his colleagues classified this condition as a vascular tumor in a chapter on sarcomas, in a section on tumors that develop in smooth muscle. Now, at risk of boring my readers with the medical “scoop” on this strange and sometimes benign-behaving sarcoma variant:
As its name implies, epithelioid hemangioendothelioma is an angiocentric vascular tumor with metastatic potential…These lesions may appear as a solitary, slightly painful mass in either superficial or deep soft tissue. Metastases to lung, regional lymph nodes, liver, and bone are reported. Another pattern is that of a diffuse bronchoalveolar infiltrate or multiple small pulmonary nodules. This entity has also been called IBVAT…can also arise in the liver, often presenting as an incidental finding or as part of a workup for mild elevation of liver enzymes or vague abdominal pain. Multiple liver nodules are the rule. Although these lesions can metastasize, they usually run an indolent course. Liver transplantation has been performed…
This sounds scary, sure, but the bottom line is that this tumor falls into unchartered oncology territory because they’re so rare. As reported in the Times piece there are only 40-80 cases per year in the U.S. A reference in the textbook, above, leads to a 1989 report in the American Journal of Surgical Pathology. In that study of 10 cases, the authors describe an unpredictable course for the disease.
As told by Mireille Silcoff in the magazine, EHE comes roughly in two forms: one’s aggressive and one’s not. So what the oncologist at Dana Farber suggested – that she go about her life, and “let the cancer make the first move” – was a reasonable strategy, one that allowed them (patient and doctor) to find out, over time, what would be the nature of her particular EHE.
She was given the diagnosis in 2003 and rose to prominence with a 2007 documentary called “Crazy Sexy Cancer.” She subsequently wrote two successful books— “Crazy Sexy Cancer Tips” and “Crazy Sexy Cancer Survivor” — about her peppy, pop-spiritual approach to her disease, and she soon became what she sometimes describes as a “cancerlebrity” or, at other times, a “cancer cowgirl.”
Now she has a blossoming business. At the cafe, she laid it all out while sipping a coconut-vanilla chai with soy. Her blog postings are being syndicated, she has pending sponsorship contracts, her weekend workshops are thriving and she has provided one-on-one coaching sessions on Skype ($250 for 90 minutes). She also just bought a farm — 16 acres complete with two houses, a barn, a meadow and a forest…
Am I jealous? Sure, maybe, some…But I’d be hopeless on a farm.
Besides, she hasn’t received chemo, had limb-removing cancer surgery, undergone early menopause…She looks fabulous! And with that kind of cancer, maybe so would you.
The issue is that Karr runs a well-connected wellness enterprise. She sells a way of life, David Servan-Schreiber style, with the message that you can beat cancer and be well if you nourish your body and mind with the likes of 21-day cleansing diets, juiced Whole Foods and meditation-enhancing mala bead jewelry.
The danger is that readers and customers/followers may believe that her current well-being is due to her lifestyle choices. And that some people with the malignant form of EHE, whose emails she may not read, struggle with feelings of inadequacy and defeat.
So I’ve learned from Kris Carr: For one thing, I don’t think I ever saw a case of EH and she, through her story, persuaded me to look it up. Second, she’s a smart business woman, who’s turned her life around upon a cancer diagnosis. Third, (am undecided, ideas?)
And I’m taking careful notes. Let’s leave it with that, for now.
*This author prefers to call epithelioid hemangioendothelioma EH, but most sources use EHE, so I’ll abbreviate as do the sources or use my own style, accordingly.