Note: This article is a sidebar to this issue's feature story, "On Cancer’s Trail."
Scientific research on breast cancer is important, but if lives on the reservation are being saved right now, it's largely through the efforts of people like Nellie Sandoval, Stefanie Raymond-Whish's mother. Sandoval, a retired high school guidance counselor, works to ensure that Navajo women get yearly check-ups to detect cancer early. If cancer is found, she helps the women understand their treatment options. As she has learned, Navajo women face unusually high barriers to recovery.
Sandoval was 38 when she was first diagnosed with the disease. Because her mother had cancer, she was already getting regular mammograms, something only 47 percent of American Indian women over age 40 do (compared to 71 percent of white women). The support of her family, along with the care of Fran Robinson, a nurse with the San Juan County Regional Cancer Center who has become a good friend, helped her get through surgery, radiation and chemotherapy.
Determined to help others, Sandoval organized a support group in 1992 through the American Cancer Society's Reach to Recovery Program for local women dealing with the disease. Because she is the only volunteer who speaks Navajo, she began visiting with newly diagnosed native women.
"A number of Navajo women are dying from breast cancer," says Sandoval, now 58. "Even though the incidence is low compared to the rest of the country, so many here are under 40 with little children. I see it time after time. The cancer I see is horrible, nasty. I think, "This is crazy, how can this happen, how can this kind of disease exist in the United States today?' It became my passion."
Sandoval noticed some disturbing facts: The native patients were not only younger than their Anglo counterparts, more of them seemed to die within one year of diagnosis. The cancer they had was simply worse. In the U.S. overall, only 10 percent of patients present with stage 3 or 4 cancer - advanced cancer that has already spread to other parts of the body. At the Tuba City hospital, that figure is 36 percent.
"My ultimate goal is to save other lives through early detection," says Sandoval. She and Robinson decided to make a Navajo-language video encouraging women to get regular mammograms and perform self-exams. The last one is particularly tricky, she says.
"To touch yourself in that way is taboo," says Sandoval. "Fran and I realized there was no way to dance around it, because you can't do a breast self-exam without touching yourself. The statistics are that 80 percent of tumors are found by women themselves. So you have to talk about it to have the knowledge to know what to do. I didn't know how to square it up. I just decided to face it head on and talk about it."
The women secured funding, made a high-production video featuring a medicine man singing a blessingway, and took it to chapter houses all over the reservation. Not everyone appreciated their effort. "To even speak of cancer or illness is to wish it upon others and yourself," explains Sandoval, whose living room features a Navajo blanket draped by the fireplace and dozens of family photos, including Stefanie at a rodeo and two sons in military uniform. "One Navajo woman at a meeting was screaming at me, "Why are you talking about this and wishing evil on us, don't you know any better?' She's an elder. But my purpose is to educate and save people's lives."
Sandoval was able to transcend the superstitions because she straddles two worlds comfortably. She grew up on the reservation in a family of 15. Times were hard: Her father, a migrant rail worker, died in a car accident when she was only 2. She was sent to a government boarding school, then to a public school, and finally to a Methodist missionary high school. There, one of her teachers encouraged her to attend college. With her children in tow, she went on to graduate school in secondary-school counseling at the University of Northern Colorado. While she speaks fluent Navajo, her children do not.
After making the first video, Sandoval realized early detection wasn't enough. Many traditional women believe that cancer can never be cured. In Navajo, they call it Lood doo nadziihii, the sore that can't be healed. Even if the women eventually travel to a hospital for treatment, sometimes they don't understand their doctors. Sandoval describes one 39-year-old sheepherder who did not speak English and thought her surgeon wanted to slit her throat. She never followed up with treatment and died less than a year later.
Sandoval and Robinson are determined to change the Navajo term for the cancer. They have also made a second Navajo-language video, this one about standard treatments, which features native women who have been cured. With funding from the National Cancer Institute, they took it on the road and distributed it to area medical centers. After that, they made another video on side effects of treatment, and now they are working on a fourth about medical complications of the disease.
Sandoval also serves on the national advisory board of the Susan G. Komen Foundation, which supports breast cancer research and patient services. She talks to her daughter Stefanie nearly every day.