Six cancer survivors share their stories and their missions.
Noelle Karmo is 6. Her mother is black; her father is white. When she wants a doll, she wants a doll that looks like her, with her brown skin and hair. The newly diagnosed often want to hear from “somebody that looks like them, talks like them, that they can identify with,” says Noelle’s mother, Maimah, a native of Liberia who is a breast cancer survivor and activist. “People need to see a face that looks like theirs.”
That kind of bond is especially critical in minority communities. Connecting with a survivor of the same ethnic and cultural background creates camaraderie and hope. Yet role models can be hard to find. In some cultures, merely uttering the word “cancer” is as if to be cursed. Fortunately, a small but growing group of activists are showing their faces and telling their stories.
[Talking Man to Man in the Black Community]
Jim Williams walked into a prostate cancer support group in 1991. He was the only black man in the room.
His diagnosis came after routine blood work at a physical when he was 55. Surgery and hormonal therapy rid him of the cancer. “I was fortunate,” recalls Williams, now 72, a retired Army colonel and a human relations consultant in Camp Hill, Pennsylvania.
Recognizing that not everyone is so lucky, Williams now devotes five to six hours a day to promote prostate cancer awareness. He puts in time at the national and local level, from National Cancer Institute committees to Pennsylvania support groups he has started.
One thing he’s learned: “A survivor has more credibility than a professional.” Plus, he points out, local folks are the ones who get all the work done. In the African-American community, he tries to find candidates in churches and fraternal groups.
The idea that people listen to “somebody that looks like you does have merit,” Williams says. “But you can screw that up as soon as you open your mouth if you don’t have the right information. You’re just a face with no substance.”
Too often, men, especially black men, are dying not because they don’t have the science, but because they’re not utilizing the science that’s available, says Williams. But that just makes him more determined to speak out. Along with his big-picture efforts, Williams will continue with the one thing he knows makes a difference: “eyeball-to-eyeball” conversation.
[A Latino Who’s Not Shy About Seeing the Doctor]
“I kind of needed a bunch of drinks that day,” remembers Guillermo Barthelmes. He’s talking about February 3, 2006. His wife-to-be had been on his back about getting a physical. He did, on February 1. Two days later, his doctor called. Barthelmes had leukemia.
The Florida banker had chemotherapy and a stem cell transplant. Cancer didn’t run his life, though. He married Viviana in 2008; they welcomed a daughter, Michaela, this January.
Today, “I’m doing well,” says Barthelmes, 31, who emigrated from Peru at 19. But he is not recuperating in quietude. “God gave me a second chance,” he says. “I will gain nothing if I chill out and watch a bunch of TV.”
Out he goes, speaking to everyone he meets—“even people at the Banana Republic counter, seriously!” He wants to encourage folks to become bone marrow donors. When he targets the Latino community, he corrects misconceptions that a donor will become sterile and fights the idea that going to the doctor is a sign of weakness.
In what little spare time he has, he and his wife have translated English-language cancer booklets to Spanish. He also speaks to newly diagnosed leukemia patients as a volunteer in The Leukemia & Lymphoma Society’s First Connection peer-to-peer program (www.leukemia-lymphoma.org; 800-955-4572).
So, it sounds like cancer activism 24 hours a day, seven days a week. Does that ever get him down?
Not at all, says Barthelmes: “The only thing I need to have a beautiful day is look at my wife and my daughter and get a smile from them.”
[Speaking the Word Native Americans Won’t Say]
HollyAnna Pinkham was diagnosed with cancer just before her 23rd birthday in 1993. She told no one—not parents, not husband, not children, not coworkers.
Her privacy wasn’t by choice. Pinkham belongs to the Yakama nation, whose language has no word for “cancer.” In Native American culture, she explains, cancer is not to be discussed: “Even to say it was as if you wanted it.”
She’s since had three recurrences. The first time the cancer came back, in 2003, Pinkham confided in her sister, who told her: “You must not have done something the first time that you need to do this time, a path you didn’t take.”
Pinkham chose a new path, bringing tribal remedies into the mix—with her doctor’s approval. And she became an advocate for Native American cancer care.
Before going public, she asked tribal elders for their blessing. “I explained I wanted to travel through Indian country, helping other native people face this challenge.” She chose her words carefully. “Instead of saying ‘I have cancer,’ I said, ‘I am facing this challenge called cancer.’ That was a way to keep it outside of my life without inviting it in.”
Her outreach efforts are also carefully worded. For example, Pinkham prefers not to reveal what kind of cancer she had. She’s found that Native Americans are more willing to ask her questions if she talks about cancer in a general way. “If I get specific, it causes an added barrier,” she says. Someone might think, “Well, it’s not the same kind of cancer I have.”
Pinkham’s wish list includes better medical care on reservations, where doctors may have limited hours and cancer specialists are many miles away. She also wants to help Native Americans bridge the gap between modern medicine and old-school native philosophy.
At powwows, she wears a “jingle dress” with the initials LAF. People want to know what LAF means, and the door is open to a conversation about the Lance Armstrong Foundation (www.livestrong.org; 866-673-7205)—and cancer.
In a cosmic coincidence, the Nez Pearce language that Pinkham speaks calls cancer survivors wasi’yiyu quepsqueps—those who live strong.
“That’s Armstrong’s motto, I guess,” she says. Hers, too.
[An Outspoken Asian Activist]
When Susan Shinagawa was 34, she had a painful, palpable lump in her breast. The doctor didn’t want to do a biopsy. She was too young to be a candidate for breast cancer, he said. She had no family history. Besides, as he put it, “Asian women don’t get breast cancer.”
Shinagawa persisted. The lump was in fact cancerous. She had a mastectomy in 1991 and eight rounds of chemotherapy.
Since then, she’s had two more encounters with cancer. In 1997, Shinagawa was treated for recurrent cancer in her cerebral spinal fluid. Four years later, another cancer occurred in her left breast.
Today, the Japanese-American says, “I have no boobs and hopefully no cancer.” But she hasn’t put cancer in her past. She has become a leading cancer activist, focusing on Asian and Pacific Islander populations.
Among Asians and Pacific Islanders, she notes, there is a reluctance to talk about cancer. “There’s a lot of superstition. People think just by being near someone with cancer, they can catch the disease.”
She’s heard too many stories of Asian women with cancer whose husbands divorced them, who were kicked out of their apartment, or fired from their jobs because of “bad karma.” It’s not that the Asian community is uncaring, she notes. It’s just that cancer causes unreasonable fears.
It wasn’t hard for Shinagawa to defy cultural taboos and speak out. A leader in the Intercultural Cancer Council (www.iccnetwork.org; 713-798-4614) and co-founder of the Asian & Pacific Islander National Cancer Survivors Network (www.apincsn.org; 415-954-9988), she shares her story at national events. Recently, she has been involved with the Asian and Pacific Islander Cancer Education and Material Web Tool, jointly sponsored by the American Cancer Society and the Asian American Network for Cancer Awareness, Research and Training. The online tool (www.aancart.org/apicem) provides physicians and others with easy access to reliable cancer information in many Asian and Pacific Islander languages.
At public forums, she inevitably shares the remark the doctor made when she came to discuss the lump in her breast all those years ago. And inevitably, an Asian woman will say: “I just got diagnosed and my doctor told me the same thing.”
“The farther away it gets from 1991 and I still hear that, it makes me more and more angry,” she says. And when Shinagawa gets angry, she gets results. Even her mother, who wasn’t completely comfortable with her daughter’s outspoken activism at first, now sees the benefit. “[My mother] has finally come to terms with the fact that my big mouth is doing some good.”
[Paddling Hard for Cancer Awareness]
Hawaiians are great sea voyagers, says Victor Kaiwi Pang, who hails from Maui and now lives in Huntington Beach, California. “They wouldn’t be able to do that if they didn’t have people who could paddle,” Pang says. “They would end up someplace that had a doldrums”—where the wind wasn’t blowing. The moral of the story, he says simply, is “you have to paddle.”
Pacific Islander men aren’t inclined to speak out about cancer, says Pang, 72, who was diagnosed with non-Hodgkin lymphoma in 1989.
“They feel, ‘Why should anyone know about my personal problems?’ They just see it as a deck of cards dealt in life.”
As a founding member of the Pacific Islander Health Partnership (pacificislanderhealthpartner?ship.org) he wants his community to know that cancer can be treated. He refers people to low-cost or no-cost medical care if they are uninsured. At the Pacific Islander Festival that he runs, 10,000 people might show up for pork steamed in taro leaves, music, and mammogram vans.
A more intimate gathering is the cancer support group Pang leads. From 18 to 30 Pacific Islander men might show up for a speaker and dinner. True to their untalkative nature, they don’t say a lot about their brush with the disease. “To them it’s, ‘wow, you’ve survived and I’ve survived,’ and that’s the only message.”
[A Tiger Lily Who’s Willing to Roar]
“A lot of African women don’t want to tell others when they have breast cancer,” says Maimah Karmo, a Liberian-born cancer survivor and activist. “They whisper about it, almost as if there is a feeling of shame.”
Karmo was diagnosed in 2006. She was 32 and living in Virginia, a single mom to a 3-year-old daughter. She was engaged to be married. Her fiancé left; he couldn’t deal with the disease.
She had a lumpectomy, chemotherapy, and a lot of unsettling emotions. She was angry and fearful her daughter might grow up without a mother.
For months she prayed for guidance. One night, she made a divine pact: “If I survive, I’ll do everything in my power to change the landscape for young women with breast cancer.”
In the same year she was diagnosed, she founded the Tigerlily Foundation (www.tigerlilyfoundation.org; 888-580-6253) to educate and support young women with breast cancer. To her, the tiger lily is the perfect symbol for a survivor. The flower can lose its petals, go dormant, then bloom again.
Grateful for help from family and friends during her treatment, Karmo has sought donations and local partners to provide meals, house cleaning, and financial aid for breast cancer patients. Karmo talks in a strong voice at churches and colleges and at women’s groups, and has even been on Oprah.
Along the way, as an African woman who came to the United States at age 16, she’s met many single moms like herself who pride themselves on being strong, black women. “They focus on their kids; they won’t allow themselves to even think about being vulnerable and sick,” she says. “I tell them you are a woman before you are strong and black”—and encourages them to make their own breast health a priority.
One topic that comes up is hair. “For a black woman, it’s a big thing,” says Karmo, who wore a wig to hide her chemo baldness. But after thinking, “I’m in menopause; I’m sweating,” she took it off. “Taking the wig off is my way of saying to hell with it! This is my experience. I’m not going to hide it.”
Besides, hair grows back—although post-chemo hair can be a challenge. To provide help, she plans to hold a yearly “Day of Beauty” for breast cancer survivors in Washington, D.C.
Not only is she a tiger lily, she is a tiger in the war against breast cancer.
Too often, men, especially black men, are dying not because they don't have the science, but because they're not utilizing the science that's available.
Shinagawa hasn't put cancer in her past. She has become a leading cancer activist, focusing on Asian and Pacific Islander populations.
As an African woman who came to the United States at age 16, Karmo has met many single black moms like herself who pride themselves on being strong, black women. "I tell them you are a woman before you are strong and black"- and encourages them to make their own breast health a priority.