A real cancer hero

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In the photo, Karen is smiling. We’re clowning around, engulfed in a spring day with nowhere to be but out on our bikes. Breast cancer has already pushed its way into Karen’s life, but the demon is on hiatus, and she has gleefully stuffed her bra to announce that cancer can take her breasts but never her sense of humor.

This month marks six years since Karen Hornbostel died. I’ve been thinking of her this week as the U.S. Anti-Doping Agency released 1,000 pages of evidence showing a vast doping conspiracy by Lance Armstrong and his entourage. The affidavits, emails, bank records and other documents paint a picture of Armstrong as a bully and a cheat.

I wish Karen was around to discuss Armstrong’s downfall. She admired Lance, and in many ways, she modeled her cancer fight after his. In 2003, the Lance Armstrong Foundation (now Livestrong) awarded Karen its “Spirit of Survivorship” award. It was an honor she proudly accepted from Armstrong himself. Like him, she vowed never to yield to cancer, and indeed she fought it to her last breath.

The USADA documents show that Armstrong cheated to win his seven Tour de France victories. The evidence is now overwhelming. The heroic, triumphant tale he (and Sally Jenkins) depicted in his books was a fraud. As Bonnie Ford explains at ESPN, “anyone who remains unconvinced simply doesn’t want to know.”

Understandably, the news is difficult for many fans to hear. No one likes to feel suckered, and fairy tales like Armstrong’s appeal to us precisely because they represent the world as we wish it was. When given the choice, who wouldn’t want to believe that something good could come from cancer — that it could turn a punk kid from Texas into a virtuous warrior who fought his disease and his sporting opponents with honor and integrity?

Some people insist that Armstrong’s sporting fraud should not diminish the work he’s done for cancer. There’s no question that Armstrong, his foundation and those ubiquitous yellow wrist bands have brought awareness to the cancer cause, but it’s also clear that Armstrong has used his philanthropic cancer campaign as a PR defense against doping allegations. (Bill Gifford’s recent investigation into Livestrong found that the organization “donates almost ­nothing to scientific research.”)

I have absolutely no doubt that Armstrong’s diagnosis was a life-altering event. The cancer had spread to his lungs and his brain, and that’s enough to scare the daylights out of any reasonable person. Being told you have cancer is an experience that no one should ever have to go through. Armstrong’s treatments were grueling, and his survival prospects were uncertain at the time of diagnosis.

There’s a popular narrative that has emerged about Armstrong — that he fought his cancer with everything he had, and his triumph over the disease exemplifies his bravery and heroism.

But Lance Armstrong’s survival is not a testament to his personal character. He didn’t beat cancer because he fought it with all of his will. He didn’t beat cancer because he adopted the right attitude or fighting stance. He beat it because he was fortunate in his misfortune to have developed one of the most curable cancers known to medicine.

As one researcher says, “When talking about this to laypeople, I try to remind them that while Armstrong is an exceptional cyclist, he is, in fact, a typical testicular cancer patient–we appear to be able to cure almost all such men.” Here’s a true miracle of modern medicine — 90% of men with metastatic testicular cancer survive.  To his credit, Armstrong does acknowledge this in It’s Not About the Bike, “The question that lingers is, how much was I a factor in my own survival, and how much was science, and how much miracle? I don’t have the answer to that question.” 

Regardless of the answer, finding out that that you have an advanced case of cancer, going through arduous treatments and then coming out the other side with a clean bill of health is fundamentally different than the experience that Karen and hundreds of thousands of other metastatic cancer patients face. For them, there is no cure, only uncertainty and ongoing treatments to manage and cope with a disease that will most likely remain with them for the rest of their lives.

I understand the appeal of Armstrong’s cancer story, and I’d hate for anyone to give up the kind of hope that his tale can inspire. But not everyone has a chance for a cure, and for these people, Armstrong may not be the right hero. Perhaps it’s time for the cancer cause to adopt some new role models — people like Karen who exemplify the ways that you can live well with cancer, even if you can’t entirely conquer it. The disease fundamentally changed Karen’s life, and not always for the better. But she coped with humor, grace and wit. Once, when a bunch of us Zinn team cyclists gathered at her house, she joked that we were having “another one of our ‘Karen’s dying’ parties.”

These parties — and there were many of them — were both sad and wonderful. It was difficult to see Karen suffer setbacks, but she had plenty of bounce-backs too. She became road cycling national champion in her age group after her first diagnosis. She kept racing initially and continued biking and skiing as long as she could. Her situation was not always rosy, and was not afraid to say that cancer totally sucks.

October 13 is National Metastatic Breast Cancer Awareness Day. I plan to mark the occasion by honoring Karen’s memory and the many people who are living with cancer and doing so with honor and dignity. I’d like to see a culture where it’s ok to acknowledge cancer’s ugly realities, where it’s ok not to feel like cancer has made you a better person. There’s no correct way to handle a cancer diagnosis, and some people clearly thrive by adopting a fighting attitude. But not everyone wants to wage war against their body. It should be possible to support those living with cancer without requiring them to put a happy face on their disease or to FIGHT LIKE HELL (a Livestrong slogan).

Karen did fight like hell, and she’s no less of a person for dying of cancer. In the 13 years between her diagnosis and her death, Karen helped countless people cope with their own diagnoses. As founder of Summit Cancer Solutions, Karen enabled people with cancer to discover the power of exercise (and cycling in particular) to forge friendships and build confidence in one’s body. And during a hailstorm on Wolf Creek Pass, she taught me that life is like a long distance bike race. No matter how bad the going gets, the only real option is to keep pedaling.

 

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Footnotes:

While certain organizations focus their efforts on pink ribbons PR campaigns, some breast cancer organizations are moving beyond awareness and toward a real cure. See, for instance, the National Breast Cancer Coalition and Breast Cancer Action.

Photos courtesy of Christie Aschwanden

 

 

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17 thoughts on “A real cancer hero

  1. Christie, I just posted this on the PRB facebook page and found myself compelled to list several quotes. We do need a broader spectrum of role models in the cancer world. We need to acknowledge that all cancers are not the same (including all breast cancers) and there are multiple pathways for dealing with a terminal illness. Karen is a role model even after her death. I know several others. And those dying parties… there’s something to be said for those too. Celebrating our leaving is just as important as celebrating our time on this earth. For me anyway. Thanks for a great article, and for honoring a marginalized segment of the cancer community. – Gayle Sulik

  2. It has been a long, exhausting, seemingly impossible week. Spent the afternoon challenging a local “awareness” event, repeating the same things as last year and hearing what I imagine is a lot of lip service while trying to hang onto my young son who has autism who was fascinated by all the “nursings” (bras) that were hung up. Was wondering why I bothered …. I read this article, and I feel renewed. Thanks so much for this, and for Gayle who inspires and enlightens!

  3. Another woman who fits your description of “people like Karen who exemplify the ways that you can live well with cancer, even if you can’t entirely conquer it. The disease fundamentally changed Karen’s life, and not always for the better. But she coped with humor, grace and wit” is Susan Niebur (a.k.a. Whymommy) who did the same so very, very well, honestly and with humor and grace until her death from inflammatory breast cancer.

  4. The LAF has done harm to the public and probably also science by providing the directory of clinical trials without describing the nature of clinical research. Participating in a clinical trial is not a way to receive better care. The research subject may receive nothing more than he or she would have ordinarily, if placed in a control group. If placed in the group of those taking the medicines being tested, the subject may be worse off. Clinical trials are conducted precisely because there is unclarity about whether the new medication is better than those already existing. Of course, medications being tested in humans are believed to probably be better; but this is not known. Doubtless the explanation at clinicaltrials.gov could be simpler, but they give the potential research subject a good sense of what to consider.

    If the LA foundation publicity made someone do something rather than nothing about his or her cancer, or do more when he or she might have given up, then it has made a contribution. Beyond that, it’s unclear what is value really is for the cancer patient or family member. An enormous amount of harm is done by the LA foundation’s story line about Lance “conquering” cancer in the same way one might train to win a bicycle race. I imagine that this alienated many people who weren’t “winning” the “race” against cancer. I am reminded of Barbara Ehrenreich’s “Cancerland” (http://www.barbaraehrenreich.com/cancerland.htm), in which she describe her experience of the ubiquity of pink ribbons and teddy bears as oppressive.

    I have often pointed this out to friends and acquaintances, and the idea is always rejected out of hand. I appreciate the clear and compelling statement of it here.

  5. PS: It would be great to see a significant upswing in interest and effort in *prevention*, so that fewer people have to start the “cancer race” in the first place.

  6. “… While many cancer survivors consider [Lance] Armstrong an icon and inspiration, others feel that he is misrepresentative of the disease. He at once gives them impossible standards of survivorship while at the same time building his heroism on the high death rates of other cancers.

    “… Armstrong’s story constitutes a culturally acceptable version of courage, cancer, and survival that serves to comfort a population with increasing cancer rates, and the ad puts to use and propagates these notions of survivorship.

    “You can be angry at cancer; you can battle cancer. One campaign underwritten by a company that builds radiation technology even allows people to write letters to cancer. But to be angry at the culture that produces the disease and disavows it as a horrible death is to be a poor sport, to not live up to the expectations of the good battle and the good death witnessed everywhere in cancer obituaries. A bad attitude of this genre certainly will never enable you to become an exceptional patient. It’s as though a death threat blackmails cancer anger and frustration.”

    S. Lochlann Jain
    “Be Prepared,” in Jonathan Metzl and Anna Kirkland (eds.), Against Health: How Health Became the New Morality, NYU Press, 2010.

  7. I wish Karen were around to read all these thoughtful comments. She would have so much to say.

    Heather is correct that Livestrong’s current focus is supporting people with cancer. That’s a noble cause, and I have no doubt that they’ve helped people.

    But I’m offended by the way that LA has used Livestrong and its work to deflect questions about his doping.

    The book excerpt that Anne Boyd shared (thank you Anne!) states my feelings more eloquently than I could have, “(Lance Armstrong) at once gives them impossible standards of survivorship while at the same time building his heroism on the high death rates of other cancers.”

    As Adam pointed out, Barbara Ehrenreich has written about the downside of relentless optimism regarding cancer, both in the Cancerland essay he linked to and also in her book about positive thinking (Bright-sided).

    Many people with cancer might find more comfort and help by reading someone like Susan Grubar. http://chronicle.com/article/Susan-Gubars-Closing-Chapters/131611/

  8. My mother died of metastatic cancer when she was 56. She fought, she understood it was hopeless, she died with dignity. I have often cringed at the “hero-survivor” narrative, remembering my mom’s brave acceptance of her fate once she realized there was no other way forward. But I’ve never told anyone; it just seemed impertinent to point out alternatives to the dominant story line.

    So thank you for saying all of this, and so beautifully.

  9. As someone who was recently diagnosed with a rare “often deadly cancer”, your comment about cancer not making you a better person struck me straight on. In my case it just made me a person with cancer. I’m not a better person, and I’m not a worse person. The cancer does not make me.

  10. So grateful to see this article. I’m a hospice nurse and so many people say they feel like they’re letting their loved ones down if they don’t want to “fight to the death.” We need to make it okay for each person to decide what treatments they want to try and when enough is enough.

  11. Christie – wonderful piece! You captured Karen’s spirit so well. She is always in my mind and around this time of year especially – I miss her a lot. I think she would have a lot to say about the current events – we had a few discussions about Lance when she returned from receiving the Spirit of Survivorship award. He wasn’t quite what she expected I think. Thank you for writing such an eloquent piece about her.

    Erika

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