Amanda Nixon found out about her cancer over the phone one afternoon at the bank where she works. Her HMO's breast care coordinator called Nixon and asked if she had a minute.
"I have some bad news for you," the woman said. "You do have breast cancer."Nixon, then 27, thanked the coordinator for letting her know. "I was fine. Sure, I would come in. Oh yeah, I had a great support system," Nixon recalls telling the woman. "And then I went straight to my desk and grabbed my personal files, Rolodex, my radio and walked out." She made it to the parking lot and got in her car. Then, she says, she had a total meltdown.
She'd suspected something was wrong. Not even a year after she'd undergone a cosmetic breast reduction, she found a golf-ball-size lump in her right breast. At first, Nixon's doctor believed the abnormality to be post-surgical scar tissue. But then, as she described it, "the golf ball turned into a softball, which turned into a purple grapefruit." When it became so painful that she couldn't sleep at night, Nixon returned to her doctor, who told her she needed a biopsy.
Nixon was diagnosed with stage-3b breast cancer (stage 4 is the most serious). She was stunned. She did have some family history with it-her grandmother-but a woman is considered a genetic risk for breast cancer only if her mother or aunt had it, and hers hadn't. Besides, she was only 27. She didn't even know women got breast cancer at that age.
Nixon was referred to an oncologist, who gave her the basic gist of her situation. She was handed a "goody bag" full of pamphlets about wigs and diet. And though she was the youngest breast-cancer patient ever treated at this particular facility, she was assigned an 86-year-old "breast-cancer buddy," a woman named Rose who'd had a double mastectomy decades ago and who never even returned Nixon's one and only phone call.
"It was so bizarre," she explains of the events that followed her diagnosis. "There was no human side to it. You feel like a statistic.
"Because her breast was so engorged, Nixon had to undergo three months of what's known as "neoadjunct" chemotherapy, which is administered prior to surgery-instead of after-to shrink large tumors.
She kept going to work throughout her chemo treatment, hiding her balding head beneath a turban. It was in her personal life that she experienced the most shakeups.
"I was dating someone at the time," she says. "I stopped seeing him. I just didn't want anyone else to deal with it."
Most surprising to her was how many of her good friends disappeared when they found out. Nixon thinks that maybe her breast cancer was just too much for some of them. Maybe it made them think about their own mortality. Other people-unexpected people-stepped up for her, but most of the time, she found it nearly impossible to deal with anyone.
"I felt so sick," she recalls. "I wanted to wear a sign that read: I have cancer. Leave me alone.'"
Nixon says she couldn't think straight during chemo. She couldn't listen to music, couldn't do any of the things she loved. And then, just as she emerged from that excruciating fog, she underwent a single mastectomy (her left breast was cancer-free so she kept it), followed by an unusually invasive reconstruction that recreated her breast with fat from her abdomen (most women opt for implants).
Sipping a cocktail on the candlelit patio of a mid-city bar, Nixon doesn't look like a breast cancer survivor. She's petite and curvy and an unapologetic girly-girl with rockabilly style. Her hair is on the short side-she admits that losing her long locks was heartbreaking-but it's a stylish cut. Her eyebrows are perfectly arched and her makeup expertly applied. Nothing really sets her apart from any other attractive 20-something woman.
But in the bathroom, Nixon unbuttons her blouse and gingerly slips her right breast out of her bra. A train-track of a scar runs along the top of her breast around to the side, where it ends in a strange flap of skin. Because it's shaped with fat, the breast looks natural enough, except that there's no nipple. A few days after this, she'd go in for a second reconstructive surgery, which would smooth down some of the scarring. But her breast will always be evidence of her life-changing experience.
I first met Nixon back in August at the Warped Tour, a two-month touring music and extreme-sports festival (or as the bands like to call it, "punk-rock summer camp"), where we were both volunteering for Keep A Breast, an Oceanside-based nonprofit devoted to breast-cancer awareness and prevention. I'd been invited by the organization's founder, Shaney Jo Darden, to help out for the day to learn more about Keep A Breast.
Among women ages 15 to 54, breast cancer has the highest mortality rate of all cancers, and it's estimated that one in eight women will get breast cancer at some point in her life. One in eight. If those were your chances of winning the lottery, your heart would be racing with excitement. So, logically, shouldn't our hearts be racing with fear about breast cancer?
The truth is, it's pretty easy to suppress that fear until someone you know gets it. When you witness firsthand the chemo, the hair loss, the mastectomy, the scars, the radiation, the reconstruction, the tears and exhaustion-and, sometimes, the death-it suddenly hits you: This could happen to my mother. This could happen to my best friend. This could happen to me.
For Darden, 35, watching the aunt of her friend Mona Mukherjea-Gherig grapple with breast cancer a few years back was a wakeup call. Darden wanted to do something; she wanted to show her support, but when she looked around, she couldn't find anything that resonated with her. The pink ribbons and walkathons served their purpose for breast-cancer awareness, but they weren't exactly cool. They definitely didn't appeal to a younger generation.
Breast cancer has a powerful effect on people below the midlife meridian, Darden realized. That one-in-eight statistic means that, age be damned, you or someone you know has had a direct or indirect run-in with the big BC. Not only that-and Amanda Nixon is living proof of this-young women do get breast cancer. One in 10 women who develop it is younger than 40-about 11,000 this year alone-and because it's difficult to detect cancer in younger, denser breast tissue, women in their 20s and 30s often discover it in more aggressive stages. Scarier still, only 10 percent of woman who get breast cancer carry the breast-cancer gene. It's really a crapshoot.
In 1998, not long before Mukherjea-Gherig's aunt was diagnosed, Darden and Mukherjea-Gherig launched ModArt, an event geared to the action-sports and urban-art crowds. In 2000, the two decided to take their experience with ModArt and raise some money for breast-cancer research. Inspired by Mexican artist Frida Kahlo, who after a tragic accident spent years immobilized in a plaster corset, Darden and Mukherjea-Gherig created plaster casts of women's torsos, which were then painted by underground artists and auctioned off.
The event was such a hit that Keep A Breast became a full-fledged nonprofit. The clever name speaks to the foundation's primary goals: awareness (keep abreast) and prevention (more literally, keep a breast-both breasts, in fact). With Darden running things, KAB has raised more than $250,000 at galleries around the country and abroad. Though she mostly relies on regular women to serve as casting models, Darden has also attracted some big names to the cause, from pro female surfers to burlesque stars. Obey Giant's Shepard Fairey and blink-182's Tom DeLonge-whose aunt had breast cancer-are among those who've donated their artistic talents. Last year, Darden was named a Yoplait Champion for her efforts in the fight against breast cancer.
Keep A Breast has been a sponsored tagalong on the Warped Tour since 2000. I'll admit I was skeptical about how the subject of breast cancer would go over with young crowds. Talking about cancer at a punk-rock festival seems about as apt as Debbie Downer citing divorce statistics during a wedding toast. I could almost picture the Saturday Night Live character raising her shoulders upwards in a clueless wah-wahhhhh shrug.
The Keep A Breast booth was part of the Girlz Garage, a big black-and-white-striped tent with a shag rug and cushions for chilling out. Darden and two other female volunteers wore snug T-shirts with the word "boobies!" emblazoned across the chest. Because not everyone can-or wants to-buy painted female torsos, KAB appropriated that childish slang word as a rallying cry. It makes for a cheeky, youthful logo and appears in bubbly, lowercase type on everything from tote bags to stickers.
A special Warped-edition plaster torso sat atop the KAB donation box, and behind the tables piled with merchandise, a large hanging banner instructed how to do a self-exam. Instead of the usual clinical drawings, though, this artwork was young and edgy. The illustrated woman even had some of Darden's tattoos, including L-O-V-E across her knuckles.
As Darden explained to me where stuff was and how much it cost, nearly every festivalgoer that stopped by handed over a crinkled dollar bill for a couple of stickers. The raising money part is great, I told Darden, but were these kids really learning something or were they just seduced by the word "boobies." (Because, really, who doesn't love the word "boobies"? Booooo-beeeees.)
"You wouldn't believe how many people have been touched by breast cancer," Darden said. "If it's not their mom or their aunt or their grandma, it's someone in their extended circle. And these younger kids who've been affected by it-they don't always have a way to express what they've been through."
She reached across the table to grab KAB's "This is My Story" scrapbook. The oversized diary was empty at the start of the tour but since had been filled cover-to-cover with Polaroids and hand-written accounts of encounters with breast cancer. (There's an online version at www.keep-a-breast.org.)
Darden was right. Later that afternoon, I sold a $20 T-shirt to a girl who looked about 20. When I urged her to study the self-exam chart and take some educational pamphlets, her face went a little ashy. "I know all about breast cancer," she told me. "My boyfriend's mom died from it two months ago."
This girl wasn't the last to tell me such a story. There were several, including Ryan Hunter, the 20-year-old guitarist from Long Island emo-rock band Envy on the Coast. He stopped by the booth to say hello to Darden and Erica Leite, the 25-year-old tattooed blonde knockout who helps Darden with all the KAB events, including Warped.
"I've worn out all three of my boobies shirts," he told them with a loopy grin. "I rotated them until they were a health hazard. We represent!"
Hunter's mother and grandmother both had double mastectomies after being diagnosed. He said it's a cause close to his heart.
Everybody seemed to know somebody who'd had it. For me, there was a teacher from high school I hadn't seen in 15 years and a woman I'd spoken to a few times at my old job. That's it. But that would all change.
The two other volunteers at the booth were breast-cancer survivors, both uncomfortably close to my own age. Kristin Graham and Amanda Nixon were hanging out with KAB as representatives of the Young Survival Coalition (YSC), a national advocacy and support organization for breast cancer survivors under 40.
At 41-diagnosed at 39-the tall and athletic Graham is at the tail end of "young," but she said she relates more to the younger survivors than the older ones. She was getting a routine gynecological checkup when her doctor found a lump in her breast. Because of her age, good health and absence of family history, the gynecologist said it was probably a cyst and told her to come back in six months. During the next visit, Graham had a more thorough exam-this time with an MRI-and the results were devastating.
"I don't give a shit if the doctor says it's not cancer," she now advises other young women. "Get a biopsy."
A double mastectomy and chemo eradicated Graham's cancer, but one of the hardest parts of her experience was not having anyone to talk to about it.
"There was nothing for me in the support groups," she recalled with some indignation. "There were older mothers and grandmothers. I'm single. I don't have kids. I couldn't relate to them and they couldn't relate to me."
After her bout with cancer, Graham helped form a local chapter of the YSC. Nixon also joined YSC, which has members at every stage of breast cancer-recently diagnosed, in remission, even terminal. It's an invaluable support group but can be difficult and depressing, Nixon told me, adding that she was excited to work with Keep A Breast because the organization tries to remain light-hearted in spite of its very serious focus.
KAB's spirit is more in line with Nixon's personality. She seemed shy at first but turned out to be a sweetheart with a wicked sense of humor. When I asked her to tell me about her cancer, she looked at me with a gleam in her eye. "OK, party killer," she jested.
She keeps a neatly written crib sheet of momentous dates in her wallet:
2/8/05 breast reduction
1/27/06 first chemo
10/06 last radiation
5/07 reconstructive surgery
She knows all the ins-and-outs of breast cancer now, but at the time of her diagnosis she didn't do any research or get a second opinion. She was so overwhelmed, she said, that she went along with whatever doctors told her. It just seemed more manageable that way.
"I had no desire to know the facts," explained Nixon, who added that she would do things differently in hindsight. "I would've asked questions. I would've asked for copies of my tests. I would've sought out other experts who don't go by protocol."
"Women should always get a second opinion," Dr. John S. Link later told me. The leading breast-cancer doctor and author of The Breast Cancer Survival Manual recently spoke at a YSC-sponsored educational forum in San Diego. He emphasized that there are many treatment options out there and that every case is unique.
Link also confirmed what both Graham and Nixon had conveyed to me: Young women with breast cancer have particular needs, from fertility and sexuality to body image. "Concerns at any age," he added, "but particularly hard on younger women without stable partners."
Body image definitely has been tough for Nixon. All her life, she'd had to deal with breasts that were too large for her small frame. The reduction surgery three years ago shrunk them down to a more manageable 36DD, and for the first time in her life, she could wear the flirty little dresses she'd always dreamed about. But then, less than a year later, one of her breasts was rotten with cancer.
Everything in her life turned upside down, especially in the realm of dating and sex. Nixon is only 29, and healthy now, and though she hasn't really dated since her surgery, she told me she's finally ready. There's no shortage of men who would find her appealing, but dating is such a delicate process of revelations-both superficial and deeply intimate. When, exactly, does one mention breast cancer to a potential paramour? Over the first drink? Just before the shirt comes off?
"I don't know when to tell them," Nixon said. "Do I wait until I'm sure they like me, or do I tell them right away to get it over with?"
She discussed everything about her cancer with candor and grace and good humor, which astounded me, because I went home that evening in a panic. If a friend's aunt had been Darden's wakeup call, Nixon was mine. Except instead of being spurred to action, I became gripped by fear and anxiety.
When was the last time I'd done a self-exam? I couldn't even remember. At home that night, I frantically grabbed at my chest, moving my fingers in circles around my breasts. I freaked out at a hard spot until I realized it was my rib. But what was all that spongy stuff? What if I got breast cancer? Seriously, what the hell would I do?
I don't even have health insurance, and my inner hypochondriac was talking in circles. My breasts-which I've both cursed and adored in my lifetime-suddenly felt like parasites biding their time to bring me down. My head spun with "what ifs" as I unsuccessfully tried to drift off to sleep.
A few weeks after our first meeting, I called Nixon and unburdened my worries on her. "You can't be afraid," she counseled me. "You just have to be aware."
She was excited to hear from me, she said, because the post-mastectomy cast Darden had made of her for Keep A Breast had just been painted by the popular graffiti and tattoo artist Mike Giant, whose mom is a breast-cancer survivor. She promised to tell me all about it over drinks.
The day she first saw it, Nixon had been a guest at Quiksilver's Think Pink, the company's second-annual breast-cancer awareness event. She'd been standing quietly to the side of the stage as another young survivor spoke to the crowd when Darden joined them and announced that she had a surprise. She brought out Nixon's cast.
The one-breasted torso-which is shown on this issue of CityBeat's cover-was a masterpiece of black-and-white roses illustrated in the crisp style of tattoo. A curvy scroll on front reads, "No gain, no loss, only change."
In front of everyone, the usually stoic Nixon wept uncontrollably.
"It's my history," she explained to me. "I got cast because I wanted to document this major event in my life. It was really emotional.
"Part of me wants to be normal and not have been affected by breast cancer," she said. "But since I have been, I want to reach out and help people, like with Keep A Breast. I think I'd like to do something like that for a living."
A few days after Nixon and I reconnected, I drove up to Encinitas to meet with Darden, who was hosting a KAB casting party at the Bergamont Spa. I'd be getting casted. It would be my documentation, too-not of a major event but of a particular moment in time.
I stripped off my tank top and bra and wrapped plastic bags around my jeans. Darden would be casting me, and Mukherjea-Gherig, KAB's co-founder, would cast 40-year-old Buffy Perez, one of the spa's employees.
"I don't have breast cancer in my family," said Perez as Mukherjea-Gherig wrapped the first pieces of warm, plaster-dipped gauze around her naked chest. "But it is something I think about a lot."
The women made small talk, but I found it difficult to participate. Only boyfriends and doctors had ever touched me so intimately, but that wasn't the issue. I didn't feel awkward or vulnerable-we were all grown women, and Darden has casted thousands of breasts of all shapes and sizes. It was more a feeling of quiet serenity. As this plaster cast of my 32-year-old breasts began to take an exquisitely sculptural shape, I was moved at the sight of it in the mirror. I didn't feel afraid anymore."
A lot of women who get casted say they don't like their breasts," commented Mukherjea-Gherig. "They're unhappy with the way they look, you know?"
"Really?" I exclaimed, more to my own surprise than anyone else's. "I love my boobs!"
"I love mine too," Perez emphatically agreed.
Darden, who'd been smoothing down the freshest layers of plaster around my upper belly, stopped what she was doing and looked me squarely in the eye.
"Good," she said in an uncharacteristically serious tone. "You should love them. They're healthy, and they're yours."
My breasts may not be mine forever, but they are for now. And, like every other woman out there, I'd desperately prefer to keep them.