By Christie Aschwanden | October 12, 2012 | 17 Comments
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.
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