Back in the Game of Life Health: Susan Nessim survived a bout of cancer only to face discrimination. So she’s fighting back with a traditional weapon: her own support group.
Sitting in a downtown Manhattan bistro snacking on trendy breads, she looks and acts the stereotype of a healthy Southern California transplant: blond, blue-eyed and pretty, effervescent in manner and eager to swap life stories.
It’s only when she stands and walks across the room that a marked limp gives evidence of the soft-tissue tumor that threatened to kill her almost two decades ago.
Her name is Susan Nessim, and she is president of Los Angeles-based Cancervive--a nonprofit cancer organization she founded in 1985--and author of three books, including “A Friend for Life: A Story and Activity Book for Kids With Cancer,” published by Cancervive.
But the group’s primary mission isn’t to deal with the treatment phase of the disease. Rather, it’s to address issues that begin when treatment ends--long-term effects that include job, insurance and social discrimination.
“It isn’t enough to be medically cured,” she says, “if you can’t go out in the world and get a life.”
Since holding Cancervive’s first support group in the living room of a Beverly Hills apartment nine years ago, Nessim has formed chapters in eight California cities plus Dallas, Chicago and New York; enlisted licensed therapists for group, individual and telephone counseling, and lectured to hundreds of groups about the difficulties faced by cancer survivors.
Now, after almost a year of residing in New York, where she moved last fall to increase visibility and obtain corporate sponsorship for more Cancervive projects, Nessim, 36, is getting ready to go home to Los Angeles.
There, she will begin production of a documentary, write a teachers’ manual for children just found to have cancer, edit an anthology and sit on the advisory board of a National Cancer Institute-funded study to track 20,000 long-term survivors of childhood cancer.
But it’s not just work that’s taking her home, she says. Last February, while on a business trip in Los Angeles, she met a man.
Such things are especially important to Nessim, who a decade ago was reeling from rejection.
“No one believed I was cured,” she says of those days. “When no one lets you forget, you can’t get on with your life.”
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The events that would irrevocably alter the Santa Monica-born Nessim’s path started in 1975, when she entered the University of Colorado. After a few sessions of horseback riding she developed pain in her right leg, “the kind where I couldn’t sleep at night, the kind that was always there. I got the nickname ‘Hoppy’ at school because I started limping.”
A physician said her problem was a riding-related hematoma that would resolve itself. It didn’t. It got worse.
A month later, another doctor took X-rays, then went into an adjoining room to call her father. She left college that night and entered the Stanford University Medical Center for a barrage of tests.
“I remember people eating sandwiches over me while sticking catheters in my arms and legs and shaving my pubic hair,” she says. “It was the most demoralizing thing I’ve ever been through, especially at the age of 17 when you’re so keyed in to your self-image.”
Then came the biopsy, she says, and the morning the oncologist entered her room and said: “You have cancer. It’s very serious. You’re going to start chemotherapy immediately and if you don’t, you’ll die.”
“I didn’t know what he was talking about,” Nessim says now. “It didn’t start to hit me until I started chemotherapy. When I looked around the waiting room at these bald, emaciated, hollow-eyed patients, I knew there was the kingdom of the well and the kingdom of the ill. I’d entered the kingdom of the ill.”
For the next year, she often thought she’d die, but most of her time was spent fighting to get through treatment, a “hunker-down mentality,” she says.
“It was a year of tantrums, of my parents prying me off the bed to go to the next treatment session, of puking my guts out for days at a time. Basically, I just slept in the bathroom.”
At the end of that year she returned to college. Her problems with cancer were over but other problems began.
At 19, she was no longer eligible for insurance carried by her father and was unable to get another policy. That same year, she went to meet her fiance’s parents and was told by the father, “I don’t want my son to be a widower.” When her fiance wouldn’t stand up to his parents, she broke off the engagement.
After graduating from college, Nessim moved to San Francisco to work for a cosmetics company. There, she says, she lost a promotion after a co-worker told her employer that Nessim had had cancer and “wasn’t up for the traveling.”
“After those three things happened, I realized there were barriers to my getting on with my life,” she says. “Isolation, rejection and discrimination hit me like a brick wall after I finished treatment.”
She moved to Los Angeles to live with her family and started seeking help.
“I called everywhere and attended countless support groups, but what I realized was that I was a trophy,” she says. “There would be 22 people sharing their stories and only three long-term survivors. Instead of being asked ‘What’s going on in your life?’ we’d be the cheerleaders for the others and our needs never got met. I’d leave feeling angry and resentful.”
After talking to other survivors and realizing she wasn’t alone, Nessim decided to form Cancervive.
“I’d identified a niche that had never been looked at before, sort of the last piece of the cancer puzzle, these long-term survivors whose needs are as valid as those in treatment,” she says.
And now the academic community is going to take a look at such issues.
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Just this year, 20,000 long-term survivors--defined as people who are disease-free five years after initial diagnosis--were contacted so that researchers could formally study the psychosocial and medical consequences of having had cancer.
“Essentially we’re going to try to find out which (cancer) treatments are associated with which types of late (medical) effects,” says Dr. Leslie Robison, principal investigator for the National Cancer Institute-funded study, which started in July. As for the psychosocial aspects, “they’re less well understood,” says Robison, a University of Minnesota professor of pediatrics. “It’s not real clear how discrimination is really affecting anyone, but we’re going to look at that too.”
He calls Cancervive an excellent organization.
“It’s a sort of coalition for people who thought they were isolated,” he says. “It gives a peer network that’s very important.”
It was just such peer support that Anne Dennis needed. The New York advertising recruiter, now 26, was found to have melanoma in 1992. After completing two surgeries, she joined Cancervive.
“(Cancervive) helps because you’re not the only one terrified to not wear jeans when everyone else is wearing shorts on a 110-degree day,” she says.
Adds Dennis: “(Nessim) can empathize with you and at the same time point out what you’re doing and what you need to change. She’ll tell you not to be afraid to get out and have a relationship, to not be afraid to live.”
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Gaining initial support for Cancervive wasn’t easy, Nessim says.
“It was very difficult to make inroads with medical centers, oncologists and other cancer organizations,” she says. “It was partially ignorance, partially territorial competition for the cancer dollar and partially wanting to use survivors as people on some pedestal, rather than people with problems.”
Still, with donations from other survivors and cancer victims plus funds from the 1991 publication of her first book--”Cancervive: The Challenge of Life After Cancer” (Houghton Mifflin Co.)--the organization grew.
But it was this past year in New York that cemented its future, she says, because that’s when she met with East Coast-based pharmaceutical companies and obtained significant funding.
“People in Los Angeles told me I was crazy to go to New York but I knew I had to do it,” she says. “Creative decisions are made in Los Angeles, but a lot of money decisions are made in New York. I had to meet with potential sponsors face to face.”
There were personal reasons as well.
Says Nessim: “I wanted to test and challenge myself in ways I hadn’t been challenged in Los Angeles. Having grown up there, having those friends, contacts and family, things had come pretty easy to me.”
She mapped out a plan of things to accomplish, hired an executive director to run the West Coast corporate offices and moved to Manhattan, taking along an assistant.
Thus began the “loneliest year” of her life.
“People in California are much more open, more willing to talk to you while having coffee in a restaurant, to speak to you on the street corner,” she says. “That’s the way I’ve always operated, but here it was dirty stares and rude comments and the feeling was always, ‘What do you want from me?’
“I just didn’t get it. It didn’t make sense. I was very homesick and thought about going home almost every day, but I have my pride. I had to prove myself. My specific purpose was that I was there to work.”
And the work went well. She obtained funding for her upcoming anthology, documentary and teachers’ manual.
Then, in February, while in Los Angeles on a business trip, she met a film producer while having coffee in the lobby of a Santa Monica hotel.
“He was sitting on a couch across from me,” she says. “I started talking to him, we went out the next night and we’ve been together ever since.”
Now, the couple will live together in Brentwood.
“It’s about finding balance in your life,” Nessim says. “Talking about cancer bores me. It’s in the past. I’d rather talk about being in love. That’s the future.”
