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.
the editors, ‘Cancer: Principles and Practice of Oncology,’ Lippincott
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.
Carr lucked out: She has the “good EH” as Larry David might say. So far, at least, she’s enjoyed a productive, enterprising life with cancer. From the Times:
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.
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*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.
Nice work, Elaine! This is a really creative response to the NYT article.
As a person who has acquired a shopping cart full of cancer diagnoses starting when I was 20, I have seen these characters come and go — they fly their flag, proclaim their victories and eventually flame out, either from cancer or overexposure. They used to drive me nuts, as Carr is doing within the cancer blogging community.
Right now, though, I’m thinking that the more voices talking about what it takes to find your way through having cancer, the better. People are smart. We pick and choose who we listen to. The presence of one more or one less green-tea enthusiast can’t protect us from wacky ideas. We need different voices at different times.
I don’t agree with what she says and my experience is not hers, but I believe she will speak so some — will be a comfort, a joy and an encouragement to some. And I say yes to anyone who can offer that.
Jessie, Thanks so much for your comment. Yes, my first and easy “take” was to blast Carr’s bad info and salesmanship. But the reality’s complex, more so than some cancer bloggers let on.
Elaine,
Thank you for this posting. It is excellent and well-done!
As a breast cancer survivor who has suffered through chemo, radiation, Aromasin, three lumpectomies, and, finally, a prophylactic double mastectomy with reconstruction (DIEP), I can say there is nothing crazy, sexy about cancer.
Prior to my diagnosis, I was young, healthy, and fit. I never smoked or did drugs. Carr is just lucky. And she’s exploiting that luck to mislead the general public.
I do agree with Jesse that people are smart, and we choose who to listen to. I’m hoping that fewer people listen to Carr.
Again, great post!
I agree and disagree. If you just look at her website, you might think one way, but I would encourage you to watch her documentary. Although she’s lucky, she also knows that she is. In the documentary, it’s really clear that it’s about her journey of being a typical 20 year old to realizing what she wants in life. She also meets and interviews several women who are not as fortunate. It’s about the crazy journey that all cancer patients and their families go on. So forget the blog, but don’t forget the documentary.
I see it as a control issue. Facing a loss of personal autonomy is not easy — so alternative methods are used to try to hang on to that control.
It’s hard for a Dr. to sell: “this is going to hurt like h*ll for months on end, it might not work, and by the way your insurance company will drop like a hot potato 2 months into treatment so you may go deeply into debt and possibly lose your house.”
Compare to: “Look at me, I’m pretty, I have cancer and I’m just eating well and having fun.”
*Sigh*
My mother-in-law saw her twin suffer through 8 years of painful, disfiguring cancer and then she herself was diagnosed with a rapidly spreading cervical and bowel cancer. Her sister was treated in the hospital setting w/ oncologists all the way so MIL decided she wasn’t going to do that she quit her radiation treatment and went on the raw food cancer diet. And strangely enough her cancer did “disappear.“About 6 years ago she got the “all clear for now” from her oncologist.
Unfortunately MIL now places undo power in the juicing diet and never even mentions the radiation treatments — unless pushed. She thinks she can control the cancer with her mind, as in, if she just thinks good thoughts and wills it — it will be so.
Sadly, the cancer came back last year — but now she won’t give us a status update on how it is progressing — because she’s “taking care of it herself”
Cancer treatment should come complete with oncologists, plus a psychologist or two and a massage therapist to deal with the stress, and improve compliance.
Ok, so I am an educated almost 50 woman and I eat well, exercise and meditate (and strongly encourage my family to do the same) because 1) I feel better when I do, and 2) if it keeps me from getting cancer, then all the better.
My question is this: is there nothing to Ms. Carr’s nutritional advice on eating less meat and more good quality veggies with regards to cancer prevention?