Editor's Note: This feature, originally printed with the title "Living with Cancer," Is a free preview of Scientific American's Special Report "New Answers for Cancer"
It was February 2003, and Kris Carr, a photographer and actress, was on a roll. The bubbly, green-eyed stunner was in high demand. She was considered “the Julia Roberts of advertising” (at least according to her agent), thanks to her success in two popular Bud Light commercials that aired during the Super Bowl. She also had some impressive theater and film credits, among them a role in Arthur Miller’s Mr. Peter’s Connections, in which she performed (in the buff, no less) alongside actor Peter Falk.
Like many of her hip young compeers, Carr, then 31, routinely burned the candle at both ends. She existed on energy bars, fast food and coffee downed between nonstop auditions and takes. Every so often her frenetic lifestyle would catch up with her as it did now: she had just returned home to New York City after “partying like a rock star” at Florida’s Sarasota Film Festival, where a film she had appeared in premiered, and she was dragging. Time to detox, cleanse her body and soul, exercise and eat right for a spell. She swore off drinking for a month and took a vigorous Jivamukti-style yoga class to kick-start her new get-healthy-quick scheme.
“The following morning I woke up feeling like I was hit by a truck,” Carr says. Every muscle ached. She dismissed her sore body as a sign that she was more out of shape than she had thought and, as usual, slipped into tight jeans, slathered on a mask of makeup and headed to an audition: a commercial for a diet shake. (She didn’t get it: too fat, says the slender onetime model.)
By evening, stiff muscles were the least of Carr’s problems. Her pain had worsened, and it was now accompanied by shortness of breath and severe abdominal cramping. She made an appointment to see her doctor the following day.
Gallbladder trouble, the physician surmised after a quick examination. Recommended treatment: yank the pear-shaped organ that, when healthy, helps the liver flush fats from the body but, when faulty, causes excruciating pain. He gave Carr a prescription for painkillers and sent her for an ultrasound to confirm that her gallbladder was indeed the culprit.
“When they did the ultrasound, they found the ‘lesions.’ They could see there were spots all over my liver—so many that it looked like Swiss cheese,” Carr says. She was concerned but still blissfully ignorant of the potential ramifications. “I didn’t know,” she says, “that lesions meant tumors.”
A battery of tests over the next few days revealed that Carr was suffering from epithelioid hemangioendothelioma (EHE), a vascular cancer in the lining of the blood vessels in her liver and lungs so rare that only 0.01 percent of the cancer population has it. Around 200 to 300 cases are diagnosed nationwide every year. The cause: unknown. The cancer was stage IV—incurable and inoperable, the doctor said. “Some people say it could have come on like a meteor shower,” Carr says; others suspect the tumors had been developing her whole life.
EHE is typically a slow-moving cancer. There are studies under way but currently no cures or definitive treatments. The doctor recommended a “watch and wait” approach. That is, that they take their cues from the tumors—monitor them for two months to gauge whether they were holding steady or moving slowly or swiftly. They were quiet for now, “indolent” in cancer-speak, and the hope was they would stay that way.
It was February 14. “Happy Valentine’s Day. You have cancer,” Carr wrote in her journal that night.
“I felt like I was punched in the stomach by God,” she recalls. “Cancer is such a frightening word. How could this be happening to me? Cancer happened to other people. I was young and vibrant. I was the Bud Girl, for Christ’s sake. I felt like I was staring down the barrel of a gun, waiting to find out how many bullets were inside.”
There were 24—to be exact—littering her liver and lungs.
Carr pressed the doctor on her options. “Just try and live a normal life,” he told her.
With two dozen time bombs ticking inside her? “How the hell could I do that? How could I live with cancer without thinking of dying every day?” she wondered.
Well, he offered, she could try to strengthen her immune system through diet and lifestyle changes.
“He did not know it, but in that moment he planted the seeds for personal revolution,” Carr says. “I was not going to kick back and wait for the unknown. I was going to dive in and become a full-time healing junkie.”
She set about trying to find out everything she possibly could about cancer. She sought second, third and fourth opinions. “If I had listened to one of the first doctors I talked to, I would have ended up sliced, fried and hauling around not one but three organs that didn’t belong to me,” she says.
Becoming a “Healing Junkie”
Carr hit the books and the Internet. (“I tell people I have a Ph.D. from Google University,” she says, laughing.) She traded in fast food for a vegan diet and swapped martinis for a green brew of cucumbers, kale, celery and sprouts. She formed a “posse” with other young women with cancer. She explored alternative therapies, including massage and meditation, and even spent time in a Zen monastery. And she began the empowering process of documenting and filming her journey—everything and everyone she met, from the physicians to the gurus to the quacks. (Beware of quick fixes, she warns: “If anyone offers guarantees—run!”)
She conducted her search for an oncologist as though she were CEO of a company that she dubbed Save My Ass Technologies, Inc., treating prospective doctors as though they were job applicants. “If it was the perfect fit: fine,” she says. “If not: next!” She nixed some of the candidates for their poor bedside manner (“There should be mutual respect”), others because of their proposed treatment plans. Among the dismissed: the one who recommended a triple organ transplant (her liver and both lungs). “Some doctors are still caught up in the old model of nuke it and cut it out—and sometimes it is really not necessary.... In my case it was not the protocol,” Carr says. “Do you want them to be stabbing at you if they’re taking that stab in the dark? It’s important to make sure you’re in the right hands. They can help you, or they can kill you. It’s that simple.”
The more physicians she interviewed, the more she came to realize that “half the time they don’t have the answers,” but it is the ones willing to admit that fact who hold the most promise of finding them. Enter the doctor she “hired”: George Demetri, director of the Center for Sarcoma and Bone Oncology at the Dana-Farber Cancer Institute in Boston, who, unlike many of the other “job applicants,” not only has the medical credentials but, she says, is also “kind and compassionate” and welcomes his patients’ input.
Keeping Tumors at Bay
Carr says Demetri believes that she can live her “whole life” with the disease but that it may have to be treated with drugs at some point. “We don’t know. There is currently no cure,” she notes, “but there’s no doubt in my mind that any new information, drugs, and treatment is going to come out of this place [Dana-Farber]. I’m in the right place to be monitored.”
Four years after turning the camera on herself, Carr turned her healing journey into a documentary called Crazy Sexy Cancer, which TLC bought in the fall of 2006. Last year it had its world premiere at the South by Southwest Film Festival in Austin, Tex.
“I’m not saying that cancer is sexy,” she stresses. “What I’m saying is that we are still empowered. We are still alive and whole. I might have cancer, but I’m dealing with it and I’m still all that. The most important thing is to have a voice and use it.”
Carr is among a growing number of people living and thriving with cancer, thanks to medical advances as well as a progressive philosophy in oncology that recognizes past mistakes of overtreatment and welcomes alternative medicine as a partner in the healing process. The new approach, she says, shatters the stigma that cancer is either a death sentence or something that has to be eradicated—and opens the door to treatments designed to keep tumors in check, which could buy time while new therapies are developed. “Many amazing new treatments are targeting tumors and leaving patients with their lives and their immune systems [intact],” she says. “Plus, there is so much that we as patients can do to help our bodies regain health.”
Carr is currently developing a nonprofit organization that will work with top oncologists on studies and research using data from the more than 1,000 members of her online community (www.crazysexylife.com) and the 5,000 to 10,000 people who visit her Web site (www.crazysexycancer.com) every week. “We want to be the bridge, one of many bridges, between Western and alternative medicine,” she says.
When first diagnosed, Carr viewed cancer as a freight train to death; now she views it as a “catalyst” for change. She changed her lifestyle, met a new community of women and ditched acting for writing, something she never believed she could do. Last year she wrote and published Crazy Sexy Cancer Tips (Globe Pequot Press), a book chock-full of practical advice on everything from doctor shopping to diet to how to keep your wits about you when diagnosed with the Big “C” (or any other disease, for that matter). She wrote a companion book, Crazy Sexy Cancer Survivor: More Rebellion and Fire for Your Healing Journey, due out in September—and is set to pen a diet and lifestyle manual to be published next year.
Perhaps most important, she says, cancer led her to her “soul mate.” She recruited Brian Fassett to help her film, edit and produce her documentary. During the project, they fell in love—and Fassett and Carr (who, when first diagnosed, thought she would never date again, let alone marry) got hitched in the fall of 2006. “It was one of the happiest days of my life,” she says. “We vowed to be fellow adventurers. We thought it would be way too melodramatic to say ‘till death do us part.’ This was a day that cancer just was not a part of.” They are now considering having kids. (“Will the hormones wake the sleeping dragon? We don’t know,” she says, “but I refuse to live my life in fear.”) And they have started their own production company, Red House Pictures.
So how is the 36-year-old Carr today, more than five years since her life-altering diagnosis? “I am happy and, I think, healthier than I was before I was diagnosed.” Her last scan in February showed the tumors are stable.
Looking back on her healing journey, she muses: “The doctors told me to ‘watch and wait.’ What I prefer is the ‘watch and live’ approach. I’m not waiting, putting my life on hold. I’m living my life, just with the knowledge that cancer is in my body.
“I think that life is just too sweet to be bitter. Once I was able to change my focus, desperation led to inspiration. I made so many changes, and I thought: This is an awesome life. I mean, honestly, I don’t think anyone has a better life than me. How can you live with the knowledge of cancer? I might not ever be able to get rid of it, but I can’t let that ruin my life.... I think: Just go for it. Life is a terminal condition. We’re all going to die. Cancer patients just have more information, but we all, in some ways, wait for permission to live.”