Crammed inside a subway car in Manhattan—feeling remarkably generous, as I often do these days—I smiled at a young woman with a fancy black ponytail hairdo who was intensely staring at me. She didn't smile back. She said: "This is the second time you stepped on my shoe."
It was quite possible that I stepped on her foot. I'm a little clumsy nowadays. Almost three years ago, at age 29, I was diagnosed with stage III colon cancer The chemotherapy treatment that followed left me, among other keepsakes, with neuropathy in my feet, numbness and tingling similar to what advanced diabetes patients experience. One day I walked two blocks barefoot before I noticed my missing sandal.
"I'm sorry," I said, then whispered, "I know this will sound strange, but I can't feel my feet."
She rolled her eyes.
It was funny. In this crowded train, nobody was paying attention to my cancer, and it all seemed surreal again: my numb feet, my uncertain life expectancy, the loneliness, all coupled with gratitude for being alive, even if it means sharing a world with this bitch on the 1 train.
Cancer. Hilarious. I later typed these words into Google and found Kaylin Andres, a 24-year-old San Francisco fashion designer who was diagnosed with Ewing's sarcoma, a rare form of bone cancer normally found in children, last September. She uses her blog, Cancer Is Hilarious, to document her experience in a way young people could relate. Thank God for cancer humor. I need something other than yet another study that offered grim survival rates or scary-sounding side effects.
Cancer Is Hilarious is just one of the hundreds of blogs combining realistic cancer confessions with humor: Making Cancer My Bitch. My Blood Hates Me. What’s Up Your Butt?Kiss My Bald Head. I’m Not an Asshole. Surgically Speaking. I’ve Still Got Both My Nuts. Virtually all of them are written by cancer patients younger than 40. The blogs are just one way younger patients are addressing the absurdity of life with cancer with humor, rather than pink-ribboned, glassy-eyed earnestness.
About 70,000 people between the ages of 18 and 40 are diagnosed with cancer every year, representing about 6 percent of all new cancer cases. About 10,000 young adults die from cancer annually, more than from any other disease. This is not the best statistic to stumble on when you are looking online for hope, as I did in September 2006 after my doctor told me he found a growth in my colon. There I was—nonsmoker, athlete, young—diagnosed with colon cancer, the disease that more commonly afflicts overweight, elderly men. And all I could think was: how inconvenient. I was a travel writer and had just scheduled trips to Rome and Cologne for the following week. Bummer. I would have to reschedule those flights.
Then I did what anyone of my generation would do: I Googled "colon cancer." Within seconds, I found out that my cancer stage, advanced stage IIIC, gave me a 44 percent chance to survive five years. I swore I would never use the Internet to research colon cancer again. (That promise lasted all of five days)
At the same time, I started receiving books, stacks of self-help volumes from well-meaning people. Books claiming that cancer was hate materialized in the body of people who don't love enough. Books promising you can cure cancer by drinking wheat-grass juice. It made me want to throw up, even before my chemotherapy regimen started and I became a vomiting expert. I didn't need more things to make me feel guilty and excluded. I already felt like an outsider. I was by far the youngest patient in the oncology ward. I was too cynical to believe herbal remedies were going to cure me but unwilling to venture onto medical Web sites, where the depressing prognosis stats were lurking, ready to scare the hell out of me.
That's when I found Planet Cancer, the most popular cancer humor Web site. It was founded in 1995 by Robin Blue, Paul Cox, and Heidi Schultz Adams, Texans and cancer survivors then in their 20s. They coined the term "cancertainment" to describe the growing subculture of young cancer patients seeking both more information and a space to indulge in inside jokes like "What's one of the top reasons to date a cancer chick? Recreational drugs are paid for by insurance."
According to Kairol Rosenthal, author of Everything Changes: The Insider's Guide to Cancer In Your 20's and 30's, the traditional cancer support system is set up to deal with older patients. Young people want to talk about different issues that the typical cancer patient might consider taboo: How do I have sex with a colostomy bag? How do I masturbate in a hospital? Will I have to choose between chemo and grad school? Rosenthal, a slim brunette with a posture of a dancer, was diagnosed with thyroid cancer nine years ago, when she was a modern dance choreographer. Unable to take radiation treatment, she currently has two tumors resting on her jugular vein, although they haven't been growing. Now 36 years old, the Chicago resident doesn't believe in the benefits of thinking positive. "I believe in the power of realistic thinking," she said. "And the reality is, you know, this sucks."
This is a sharp departure from the cancer survivorship rhetoric of the last 20 years. For members of an earlier generation, curing oneself of cancer was often associated with turning inward to positive thinking and spirituality and away from anything resembling cynicism and irony. Experts nowadays say that the power of positive thinking might be overrated (thankfully). Jimmie Holland, a psychiatrist at the Memorial Sloan-Kettering Cancer Center in New York and the author of The Human Side of Cancer, confirms that patients often feel that being sad, scared, upset or angry is unacceptable and that emotions can somehow make their tumors grow. "For most patients, cancer is the most difficult and frightening experience they have ever encountered," she writes, and she argues that the emphasis on positive attitude invalidates people's natural and understandable reactions to a deadly disease. "Many negative, pessimistic people survive cancer, while others who believe positive attitudes will cure it do not. I do not believe for an instant that people whose cancer progresses have a weaker spirit or character than anyone else."
Despite their cynicism, young cancer patients are some of the most vocal cancer activists out there, precisely because they don't feel like they need to whisper after they lose a breast, a testicle, or sex drive. They start foundations, write books and blogs, launch clubs, and use technology to spread the news. Garland Harwood, a 29-year-old public-relations manager, combined both advocacy and humor when he planned a fundraising event on behalf of the American Cancer Society of Brooklyn, N.Y., which helped when he was diagnosed with sarcoma four years ago. Leery of the usual cancer fundraising event, where clichés are recited and pictures of deceased patients put up in a heart-wrenching slideshow, Harwood instead launched "Comedy for Cancer," a fundraising event in Brooklyn, featuring the stand-up comedian and Hodgkin's lymphoma survivor Nick Ross.
Ross, 27, first got the idea to create a stand-up show about cancer last year, when a man sitting on next to him on the bus asked: "Did you shave your head because you're losing your hair?" Ross, briefly appalled by the incongruity of the question, decided to be brutally honest: "No, man. I am on chemotherapy." Hoping to reconcile with a bald cancer patient, the man offered: "I am in AA." The man's friend chimed in, "I'm addicted to porn." Ross compiled this and other absurd moments in his life as a marginalized citizen in his 35-minute stand-up show, excerpts of which he performed at the fundraiser.
"Comedy for Cancer" was a huge success and resonated especially well with the "Brooklyn hipster crowd," says Harwood. Only one person in the audience, a cancer patient, said later it was "just too much." Cancer was traumatic for her, and joking about it made it worse.
The reality of cancer among young patients obviously isn't funny at all. As a group, we often fall into a no-man's land between pediatric oncology and adult oncology, with few traditional outlets able to cater to our needs. Young adults are the largest underinsured group. We face threats not just to our lives but our fertility, dating prospects, and financial stability. Often, we're long misdiagnosed as "too young for cancer," and by the time the disease is identified, it's too late for an effective treatment.
Jill Harrison, a 26-year-old director-playwright, was misdiagnosed by her general practitioner for months after "getting the flu over and over" five years ago. She had lung cancer, an unlikely scenario for a 21-year-old nonsmoker with no family history of lung cancer. After a successful surgery and no reoccurrence of cancer so far, Harrison is grateful her generation and many of her friends were comfortable with "putting it all out there." Humor and openness, she said, saved her life. She has just finished writing a play called In Search of Hope. It starts with the main character, Hope, walking into a radiation room insisting that she be allowed to bring in her iPod to drown out the radio, playing Tony Bennett's "Put On a Happy Face."
But Harrison looks for meaning behind all the humor and sarcasm. To her generation, she says, "everything is funny." She argues that while funny cancer blogs create an instant community, they fail to truly connect people. "It's just another version of not talking about it," she says. She found the right mix of support and cancertainment through the foundation I'm Too Young For This! "They are a rocking young-adult support group because they are all about inspiring connections and talking about 'it,' " she says.
The I’m Too Young For This! Web site functions as an aggregator of all organizations and blogs by young patients. It uses the arts and social media to organize, mobilize and activate young adults, destigmatize cancer as a death sentence, and make it easy to talk openly. They sell "Stupid Cancer" merchandise (WHITE BLOOD CELLS ARE FOR LOSERS T shirt, anyone?) and organize Stupid Cancer Happy Hours. "There are huge generational disconnects with the old-school, big-box cancer societies," said Matthew Zachary, the founder and CEO of the I'm Too Young For This Cancer Foundation. "We're trying to be more hip and more relevant whereas those other charities come across as stodgy and out of touch."
As a part of the foundation's outreach effort, Zachary, 35, a survivor of pediatric brain cancer diagnosed in college, has been producing and co-hosting The Stupid Cancer Show out of the foundation's office in New York. With more than 18,000 live listeners each week, the internationally syndicated live talk-radio broadcast has become the voice of young adults with cancer. For the last two years, every Monday night he has been interviewing doctors who often have the "personality of oatmeal," mobilizing cancer patients to "kick cancer's ass," and being the cancertainer that he is, offering endless cancer jokes.
It's not always easy to poke fun at cancer. Zachary's friend, Susan Cross, 38, had just died of brain cancer the week before that day's show. During the broadcast, he asked everyone who was listening—PEOPLE at home, hospitals, and at work—FOR a brief moment of silence. One young adult dies of cancer every hour, he said. "Do I ever get numb?" he asks his audience. "I do, honestly."
So do I. Though I have been cancer-free since I finished chemo more than two years ago, I will always remain a cancer girl—THE affectionate nickname bestowed on me by friends. Last year, a genetic test revealed that my mother and I are carriers of the Lynch syndrome, an inherited gene mutation that causes not only significant risk of colorectal cancer (check), but also cancers of the uterus, ovary, stomach, small intestine, hepatobiliary tract, urinary tract, brain, and skin. So, aside from breast and lung cancers, I'm well suited for a BINGO on my oncology scorecard. My doctors try to be one step ahead by giving me annual colonoscopies, semiannual stomach endoscopies, annual PET scans, twice yearly blood work, annual skin checkups, twice yearly gynecologic smears and ultrasounds, and something else I'm probably forgetting. Chances are, on any given day, I'm either scheduling or rescheduling a doctor's appointment, waiting in a specialists' office or having a scope put in one of my body cavities.
Still, I have always joked about cancer, often to put other people at ease. At times, making jokes feels just as thin, forced, and fake as those HANG IN THERE kitten posters. But often, the reality is so overwhelming that all I can do is laugh.
At the Mercury Bar in New York's Hell's Kitchen, a fitting neighborhood for cancer survivors' bash, cancer patients and survivors below the age of 40 got together in May for a regular happy hour organized by I'm Too Young For This! "Chemo shooters" and "cancertinis" (basic shots and martinis, rebranded) were being served, and with cocktail in hand, nobody looked particularly sick—OR at least not the way "an amateur" would imagine a stereotypical cancer patient to look like. The invitation promised the event would attract people "who don't care whether you have one boob, one ball, two ports or even a hyperactive platelet count," and between the three dozen people who attended, my informal survey added up to at least 50 breasts and approximately as many testicles. People introduced themselves and their friends as efficiently as one would expect from the text-message and Twitter generation: Jennifer, ovarian, five years ago. Scott, testicular, three years in July.
Some attendees, such as Lindsey Brass, 29, went through relapses. Brass, a leukemia patient diagnosed at the age of 24 and relapsed by 25, finished law school last year just months after finishing chemo. At the bar, she mingled with other patients whom she met at previous events months ago and hadn't seen since. "People have been telling me 'We haven't seen you forever. Wow, you are alive!' " she said. "It is kind of a sick thing to say if you think about it." She laughed. Mortality jokes got progressively funnier as the night went on. It was hilarious. Really. You had to be there.