Notes on Kris Carr and Crazy Sexy Cancer

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.

*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.

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18 thoughts on “Notes on Kris Carr and Crazy Sexy Cancer

  1. 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.

  2. 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.

  3. 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!

  4. 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.

  5. 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.

  6. 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?

  7. I just bought one of Carr’s books and got zero information from it. I’ve been vegan/vegetarian for two years and her “cleanse” is just a vegan diet. It’s like she’s arriving very late to the game and telling everyone what she just learned, but everyone else already knows. Most of her recipes were salad dressings. Her diet advice is eat veggie and raw and she is such a lazy author that all the info is completely vague. Her book even has the statement “I’m not going to tell you exactly what to eat each day.” Ok, that’s fine, but for a book claiming to provide a 21-day cleanse, a lot of paper has been wasted just to say “eat vegan and exercise.” If that’s all there is to it, then I and millions of others have been on years long cleanses. This lady is absolutely using celeb connections and a publisher who sees the profit potential to cash in. I won’t buy any books by her or recommend her info. I’m disappointed that Dr. Oz has endorsed her.

  8. I love Kris Carr’s message. Regardless of what type of cancer one may have, the “c” word is terrifying for those who hear it. I love that she decided to use it to turn her life around and has inspired many, with and without chronic and serious disease, to do the same! What she has done is found an upbeat way to show people that they can have more control over their health than they may have thought possible… Simply through the foods we consume!
    Lisa, I’m glad you have known all of this for years, but I am here to tell you most people in this country do not know the real deal behind vegetarianism or veganism and what a healthy lifestyle looks like When I tell people I limit processed food they ask me what can I eat? It sounds ludicrous to me when people ask but I have to realize that the majority of Americans eat mostly processed unhealthy unsustainable diets. Authors like Kris Carr (a rarity) spread knowledge about the positives and joys of vegetarian/vegan diet without sounding harsh, pressing or judgmental and actually inspire people who would have never tried on this type of lifestyle to at least try it on for a bit.
    Kris Carr never claims that her diet will cure cancer. She simply says that it helps her feel better while living with cancer and can help prevent a host of other diseases. Yes, she has celebrities that back her up, that’s smart! She knows that unfortunately Americans idolize celebrities and will listen to them before they listen to experts in this area. But she also includes a host of experts in the field of nutrition, health and preventative medicine – much more so than the number of celebrities. She also lists a variety of resources throughout and at the end of her book so people can find their own ways.
    She writes time and again that she doesn’t expect everyone to go full force as she has. She encourages any change that is healthy and positive.
    To put someone down for writing a book and sharing a message about how to be healthy and in control of your own life is just sad to me. I for one celebrate those who spread a positive message and work to motivate others to be happy and healthy and believe they deserve both! Rock on Kris Carr and keep inspiring positive change in the lives you come across!

    1. Michelle, I could not agree with you more. Eating fruits and vegetables is not inherent with most people. And I can not figure out why so many of you would waste so much time spreading negativity about another woman and another cancer survivor. It is her journey and she can share it in any form that is healing to her.

  9. “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.”

    I completely agree with this quote and it really struck a chord with me.

    I am 21 and living with Epithelioid Hemangioendothelioma- exactly the same condition as Carr’s.

    Although Michella (above) says that Carr never claims her diet will defeat cancer, she believes it will and says something in her book along the lines of: ‘I belive that with this diet one day I will be cancer free.’

    I was 20 when I was diagnosed with EHE and I was terrified. I looked up the condition on Wiki, found a link to Carr and breathed a sigh of relief.

    ‘You can live with this condition!’ I thought. ‘She has for nearly ten years’

    I read into the book, believed everything she said and went vegan, juicing veggies everyday and growing my own wheatgrass.

    It hasn’t worked- I lost lots of weight, felt really trapped by my fear-induced veganism and scans showed my EHE was getting worse anyway.

    My point is not that Carr= ‘bad’. Her documentary is awesome- really easy for a cancer patient to relate to and very inspiring.

    Her books are terrible- all they do is promote a vegan diet in a scaremongering way- do this is you have cancer! eat dairy and you will die of cancer! she even tells people to try eating 60% completely raw food… unless you’re seriously ill, in which case it should be ‘70% or more’

    This is a dangerous message to send out- most people, like myself, who suffer from aggressive cancer find it hard to keep any weight on at all and Carr’s message- to eat green veggies and shun dairy- makes it nigh on impossible for you to sustain a healthy weight with cancer.

    There is nothing ‘crazy’ or ‘sexy’ about cancer, and there is nothing ‘crazy’ or ‘sexy’ about EHE either. Carr is lucky to have a benign condition when so many EHE sufferers don’t. Aggressive EHE often involves surgery, chemotherapy and clinical trials with little or limited success. Her ‘beat cancer with veganism’ books are dangerously misleading and deliver false hopes to sufferers of aggressive EHE who at current are facing an extremely tough battle.

    Maybe Carr should stop perpetuating the ‘crazy sexy cancer fighter’ sham and sell herself- more fairly- as a ‘vegan wellness warrior’ or ‘green veggie aficionado’ instead. Either way, she needs to stop throwing the words ‘cancer’ and ‘veganism’ around in such close proximity. Otherwise hundreds of thousands of books, tickets and subscriptions sold will be to exactly the same people- frightened, desperate and naïve newly diagnosed cancer patients such as myself one year ago.

  10. I find Kris Carr’s message inspiring, encouraging and a comfort – I got given her books as a gift when I was first diagnosed with cancer, at first i didn’t want to read them and I didn’t want to accept what I had been told. It’s scary when you have been diagnosed with any form of cancer that I do know. To give others a positive message is a powerful tool. From her books I have indeed pay more attention to what i eat (I ate well before but her books made me look at my lifestyle more deeply) I juice regularly now. I enjoy lots of healthy activities and live a balanced life. That’s my key. Dont we all like to hear a positive? We do need to find ways to live thru cancer – so many of us will at some point be that person.

  11. I started the blog, http://www.AliveAndKickn.com several years ago, after colon cancer #2. Subsequently I was diagnosed with Lynch Syndrome and found a kidney tumor. As I like to say, I’ve been given an interesting set of cards to play with. After multiple surgeries, chemo, and a body full of propofol at any given time, I still keep a full schedule, coach and play soccer. I have a voice, literally and figuratively, and since colon cancer really has no celebrity, I may be the one shouting at the rain for the time-being. I’m sure that people will hear my words and have multiple reactions, ranging from opportunistic, to inspired, to sympathetic. It comes with the territory.

  12. I was diagnosed with a rare and inoperable brain tumor in 2010, in the same month that I turned 30. I was soon given not one but two copies of the “Crazy Sexy Cancer” book by two different well-meaning women. When I flipped through her book, I could see she was an “actress and photographer” already, who had her whole family with her all the way, had connections with people like Sheryl Crow, and was posing in a “sexy” way in a photo on a CT or MRI table thing in her little medical gown. Her story is the story of a RICH girl who is an actress making money off her cancer diagnosis. I am from a POOR family, don’t have much in the way of family or friends, (like freaking Sheryl Crow) and I lost my hair in the front from radiation forever. I will never feel sexy with my cancer. I hate Kris Carr for rubbing it in my face….. she’s a rich actress living on her big farm with rolling meadows, feeling sexy with her $250/ for 90 min. advice sessions and I am dying of cancer in a trailer. She makes me feel more depressed than anything! She just cashes in on everyone’s desperation, and unless you are an actress already with tons of money for special diets, etc. then forget about being as crazy and sexy as she is.

    1. Stacey, I am so sorry for what you are going through. While I can appreciate that Carr is doing some good for the world by promoting we all eat more veggies and take care of ourselves, I have also felt some resentment towards her. She has the world’s greatest support system and had the time and money and insurance to go on a self-discovery tour after her initial diagnosis. I am so glad she had that support, I would never want to take that away from her, but it does feel insulting to have her bouncing around, attractive, with great skin and hair while others are truly suffering… and then tell you that you can live just like her… if only you drink your green juice. She does not seem to realize that cancer hits poor and rich alike. Who can afford her diet?? I have a mini-fridge in my studio apartment and can’t stuff all of that raw food in my fridge. She put on the weekly shopping list she was promoting something like 8 cucumbers, 2 heads of kale, and so on… in a mini-fridge?? Are you kidding me? She has an amazing support structure, has been given a world of opportunities, and has a non-aggressive form of cancer. I can see why you would feel the way you do. While I think she means well, she sure does not realize how offensive some of her advice is to those who can’t afford to follow most of it.

  13. When I first saw the film Crazy Sexy Cancer, I had recently been diagnosed with my 2nd cancer. I watched the film and it really touched my heart, deeply. However, after visiting Carr’s blogs and sights in the following months and years and seeing what a business she has made out of her diagnosis, I was completely turned off. I understand researching and wanting to spread hope and valuable information to others, but to capitalize on it in such a huge way, is a little “out” there for me. There has been too much sensationalizing and income made off of her story to make me feel comfortable with it. I almost feel insulted.
    Stacey was correct in stating there is nothing about cancer that feels sexy.
    I’m not saying that Carr’s diagnosis is untrue or that her disease should be taken lightly, I’m just saying, I think that making a living off a disease that has/is killing thousands of people, is not ok.

  14. I’m going on seven years surviving stage IV colon cancer–diagnosed at 40–and let me tell you, there is nothing sexy and crazy about it. It’s terrifying and ugly and scary and you have to go through a lot to come out feeling grateful and hopeful. In my early days I read her books and clung to her hopeful “beat cancer through diet” message. Reality? My awesome oncologist, kickass western medicine (surgery, chemo, biological targeted therapies, etc.) pulled me though. I ate to gain weight, to make me feel better and stronger. I ate what tasted good–believe me,just look at her alkaline juice recipes made me want to want to vomit–and got through it all. She is a shrewd business woman. You listen to your oncologist and nurses, listen to your body and do what you have to do. Kris makes you believe you have control–and you really don’t. I am lucky and I am grateful for what I CAN control. I do a little juicing every day because I like to drink my vitamins. But you don’t have to read her stuff to get the recipes. The internet is an amazing thing.

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