After successfully undergoing cancer treatment almost 30 years ago, Susan Nessim thought that she could put the experience behind her. With her disease conquered, Nessim found a new set of challenges ahead.
The Beverly Hills native had been a college freshman when she was diagnosed with a rare cancer of the leg; when she returned to school, her friends treated her differently. Dating seemed fraught with complications. The job market was daunting. And the prospect of losing coverage under her father's health insurance policy filled Nessim with dread.
Nessim sought out cancer support groups, but only found ones geared for those in treatment. With participants talking about hair loss and nausea -- or worrying about sheer survival -- Nessim's concerns seemed out of place.
Sitting in her bright yellow Brentwood office, the petite blonde recalls the agony of that time in her life. In the company of those still fighting the disease, "I ended up being the trophy," she says. "When you're an example you can't have issues. And I had huge issues."
Because of advances in treatment, cancer survivors like Nessim constitute a large segment of the population. According to National Cancer Institute estimates, in the year 2000 there were 9.6 million Americans with a history of cancer. After talking to other long-term survivors with similar concerns, Nessim concluded, "There was a whole population ... who were at wit's end about how to live their lives."
To help herself and others grapple with a daunting array of social, emotional, employment and insurance issues, Nessim founded Cancervive in 1985. The organization runs a resource center that develops and provides a broad range of materials to hospitals and cancer organizations around the country. Crisis counseling is also offered in the Los Angeles office and a disability rights attorney in Washington, D.C. answers questions via the group's Web site.
Cancervive has produced a collection of documentaries, available on video, which address various aspects of survivorship. Nessim says that when she interviews other survivors, "We can talk about all the really tough issues, the really deep, scary stuff and it works."
Nessim is also concerned about the long-term effects of cancer treatment. Her own treatment 28 years ago involved radiation to her right femur, and she's walked with a limp ever since. Last fall, while she was walking in her house, her femur snapped.
Nessim faces the possibility of losing her leg and resents that she was not told about the possible future complications of her treatment. It's important for patients to be active participants in their treatment decisions, says Nessim, who has written two books: "Can Survive: Reclaiming Your Life After Cancer" (Houghton Mifflin 2000) and "Cancervive: The Challenge of Life After Cancer" (Houghton Mifflin 1991).
Dr. Ernest Katz, director of Behavioral Sciences and clinical professor of pediatrics at Children's Hospital Los Angeles, has worked with Cancervive as a consultant and adviser on numerous projects.
"In addition to her life experience, Susan as a person also has a wonderful ability to connect with people, whether they are patients and families who are looking for sources of support and inspiration or agencies and organizations that might be willing to fund [projects]," Katz said.
Katz collaborated with Cancervive on a program designed to assist children re-enter the school setting following cancer treatment. The "Back to School Kit" contains a teacher's guide and videos geared to educating classmates, school staff and family members about this issue. The organization received a grant from the American Legion Child Welfare Foundation to distribute 20,000 copies nationwide.
Married four years ago, Nessim says that cancer can give life new purpose and focus. "There's an honesty and a clarity about people who have faced death, and I wish that well people could live that way also," she says. "I think healthy people could take a lesson on that one."
Nessim says her friends never thought her work would become "such a long-term occupation," but she can't seem to stop.
"Most people who've had cancer really want to help other people," she says. "I grew up with the word mitzvah.... If you're lucky enough to be alive and to have conquered something and can in any way help someone, you should."
For more information on Cancervive contact (310) 203-9323 or visit www.cancervive.org .
Cancervive is among the sponsors of Celebrate Life, a festival for Children's Hospital of Los Angeles patients past and present, on the occasion of National Cancer Survivor's Day. Taking place on Saturday, June 12 ,10:30 a.m.-3:30 p.m. at the L.A. Live Steamers recreational area in Griffith Park (5202 Zoo Drive, next to Travel Town), the free festivities, geared toward childhood and adolescent cancer patients, long-term survivors and their families, will feature entertainment, refreshments, arts & crafts, train rides and face painting. Scholarships will also be presented to teen survivors who are entering college and vocational schools. For more information, call (323) 669-2121.