Lance Armstrong has given hope to cancer patients across the world. The champion cyclist has proved that you can survive. But there is more to this story than winning the Tour de France, something that only people (and their kinfolk) who have had cancer or other dreaded diseases can understand.
At the moment, Armstrong is the most famous cancer survivor in the world, and he is teaching the world something it badly needs to understand. Cancer is not the death sentence it used to be. People can lead long, productive lives after even the most heroic therapy.
But all too often, when people find out you have cancer, you are written off. Your company sees no point in investing in you since you're probably not going to be around for long. And for some, that's what happens. But I learned after being told I had breast cancer that you can't pay attention to survival statistics. Each person is an individual whose fate is a matter of his or her own destiny.
I was employed by The Washington Post, a large company with good benefits that could afford for me to disappear for six months of sick leave. My employer protected me when I was most vulnerable. Few inside the paper knew what was going on and even fewer outside. I did not lose my job because I had temporarily lost my physical and emotional health.
Armstrong was not so fortunate. His exhilarating victory last week has overshadowed details of the devastation that entered his life in the fall of 1996 when, at 25, he learned he had testicular cancer. With nearly 40 tumors in his lungs and two in his brain, he was given less than a 40 percent chance of survival. He had just signed a contract with the French team, Cofidis. He was making $1 million a year as a professional cyclist.
He underwent the surgical removal of one testicle, followed by four courses of punishing chemotherapy that transformed him from a world-class athlete into a cancer patient. Cofidis dropped him.
This is the part that resonates with my pal, Susan Lowell Butler, who was told four years ago that she had both ovarian and breast cancer. At the time, she was chief executive of a small organization that could not afford to keep someone on the payroll who might not be able to work. She, too, was let go.
"When I read that his sponsor cut him off, it brought it all back for me, what it felt like to lose your job while you are in danger of losing your life," she said.
Today, Butler serves on the National Cancer Institute Director's Consumer Liaison Group and on the patient advisory committee at the National Institutes of Health Clinical Center. She also is on the board of the Ovarian Cancer National Alliance. Her work brings her into contact with many cancer patients and their families.
"For me, personally," she said, "the most searing fact about Lance Armstrong's victory wasn't that a cancer survivor can get up and go on -- because I've done it, you've done it, and so have hundreds of thousands of cancer survivors -- but that, when he was down and first diagnosed, his livelihood was threatened as mine was. That happens to a lot of people regardless of the diagnosis and regardless of recovery. They are discriminated against and held back for a lifetime because people consider you `dead man walking.' There is no point in continuing to support you in terms of the employers' self-interest. The net result is that at the time you are most vulnerable and most need support, you get the least you ever had in your life. If I could be queen for a day and have a magic wand, I would prohibit such discrimination by law.
"The most rolled-over people are those whose health insurance is tied to their work," putting them and their family at risk, Butler said. "The human devastation our present policies cause are immeasurable. You are Susan Cancer. It is the dirtiest secret of American life. I never gave it any thought until I had to deal with it. There ought to be a window of protection where you can rearrange yourself when you are on your back physically and financially, where you cannot be destroyed on all levels at once."
When cancer patients or others who get terrible diseases lose their livelihood, it sends a message of hopelessness that "everyone thinks you are going to die," she said. "It just sucks the air out of your heart. It's a huge blow to your faith in your ability to get well."
When Armstrong finished chemotherapy and decided to race again, the elite teams said no. His agent, Bill Stapleton, has described the fall of 1997 as "a really humiliating time for us. Absolutely no one was interested. They laughed at me. They said he'd never be competitive again."
The only sponsor willing to take a chance was the U.S. Postal Service, with a deal of about $200,000 a year.
Armstrong, who was not married at the time of his diagnosis, banked sperm. At the end of 1998, he and his wife, Kristen, began the long, expensive, and for Kristen, often difficult medical process of in vitro fertilization. She is now pregnant. She has posted a detailed account on the Internet: "There are so many couples out there who have dealt with cancer and the consequences of treatment -- and now they are faced with the fact they may not be able to have a family. I want these people to know about our experience so it doesn't seem so intimidating."
Ten times as many patients died 15 years ago from testicular cancer as now. The change is largely attributed to platinum-based drugs, one of the great success stories in the growing pharmaceutical arsenal. Despite a poor prognosis, despite loss of livelihood, Lance Armstrong recovered and came back at the top of his game. Cofidis didn't finish in the top 20.
"He got even," said Susan Lowell Butler. "For him to race again and to win the thing, is the ultimate sweet victory for cancer patients everywhere."
He showed the world it could be done.