Recovery Loves Company : Fellowship of Those Who Have Grappled With Cancer Nourishes Hope, Dims Fear

After Teresa Clark of Irvine underwent surgery for ovarian cancer in February, she began feeling as if “the bottom was dropping out of my world.”

It wasn’t just that Clark, 43, a lawyer and mother of two children, had never really been sick before. She also discovered that many of her friends felt awkward talking with her about her cancer; others avoided her completely. What Clark needed most was someone to talk with, someone who knows what it is like to have cancer.

She found what she needed at a meeting of the Wellness Community.

A friend had suggested that Clark look into the nonprofit program, which operates out of an old yellow house in Santa Monica and offers free psychological and social support to more than 500 cancer patients a week.

“There was just a lot of energy in the room,” she said. “There were people who had just discovered they had cancer and wanted to do everything they can to fight it, and there were those who had beat it. It was really nice to meet people who had gone through it and recovered. It took a lot of the fear away, the fear of the unknown.”

Since her first visit to the Wellness Community in March, Clark has continued to make the 100-mile round-trip drive every Thursday to participate in a support group. “It keeps you from feeling isolated,” she said.

But freeway commutes to Santa Monica for Clark and the 20 other Orange County cancer patients active in the program will soon be a thing of the past. The county’s own Wellness Community is expected to open near UC Irvine in the next few months.

The Irvine Co. has pledged $15,000 toward the first year’s rent on a temporary facility. Meanwhile, a fund-raising campaign is in full swing, with talks under way to build a permanent, 6,000-square-foot complex on leased land at UC Irvine.

The dream of a Wellness Community to serve the county’s estimated 11,000 cancer patients received its biggest boost at an invitation-only party last weekend. Harriett M. Wieder, chairman of the county Board of Supervisors; UCI Chancellor Emeritus Daniel G. Aldrich Jr. and Walter Gerken, past chairman and chief executive officer of Pacific Mutual Life Insurance Co., introduced the concept to leaders in the business, medical, philanthropic and cultural communities.

Wieder, who has led the effort to establish a Wellness Community here, described the gathering as “the catalyst that will really get things moving.”

At the party, held in the Huntington Harbour home of Steve and Marianne Mansfield, Harold Street, president of development for the Koll Co. in Irvine, announced that the company would provide the labor to build a permanent facility. Others, such as Leonard Shane, chairman and chief executive officer of Mercury Savings & Loan, and his wife, Marjorie, pledged financial support.

“We will make a financial contribution, but more important than that, I’m a pretty good fund-raiser,” Shane said this week.

“I’ve offered to help solicit others and become part of the volunteer support group. I think the Wellness Community is very worthwhile and very much needed. We’re going to see to it that it happens. I think many businesses and community leaders, once they’re aware of this, will be happy to help. All of us who were at the party were terribly impressed with the story.”

The Wellness Community was founded in 1982 by Harold Benjamin, a former Beverly Hills lawyer who believes that if cancer patients participate in their fight for recovery along with their physicians--rather than acting as helpless, hopeless and passive victims--they will improve the quality of their lives and may enhance the possibility of recovery.

Since its inception, the free, nonprofit, non-residential program has offered cancer patients weekly 12-member support group sessions with licensed psychotherapists, social activities such as a Sunday brunch Joke Fest and workshops on subjects including nutrition, anger and stress management, pain control, family problems and visualization (a combination of meditation and guided imagery in which participants imagine that their immune system is battling the cancer cells).

But most of all, the Wellness Community offers cancer patients a supportive place where they can go and no longer feel alone. It is, as actress Gilda Radner, one of the Wellness Community’s most famous participants, has described it, “just a bunch of comrades in arms united against a common enemy.”

That was evident at a recent Sharing Group meeting, an introduction to the Wellness Community attended by Clark and 35 other new and old participants in the living room of the Santa Monica facility.

Like a meeting of Alcoholics Anonymous, they took turns introducing themselves and describing their stories:

“I’m Faye Fox and I had breast cancer. . . .”

“My name is Judy Levenstein and I’ve been a participant here for 2 years. . . .”

“My name is Gloria and the name for my cancer is lymphoma. . . .”

Then it was Clark’s turn. As she described her cancer and treatment, she echoed a familiar message:

“Last night I learned I had a little nodule of cancer still left and I would have to radiate it. I would have been a basket case--I was a basket case last night--but I think you learn at the Wellness Community to research things--to get more than one opinion and make your own decisions the best you can, to hit the ground running. . . . Everyone here has learned you can make yourself do a lot more, to stretch yourself in good ways and in difficult things.

“And you figure if you get through this--and all of us have--you can do anything. I don’t think anything can scare you anymore.”

Clark is so high on the Wellness Community that when the county facility opens, she plans to volunteer to help do “whatever they need.”

Such enthusiasm is particularly gratifying to Wieder, for establishing a facility here will fulfill a promise she made to herself after her sister died of cancer in 1985.

A framed color photograph of Wieder’s sister sits on a table behind a sofa in Wieder’s Huntington Beach home.

The picture was taken shortly before Estelle Ullman, 62, was diagnosed with pancreatic cancer in November, 1984. A resident of Pacific Palisades, Ullman and her son, Jeffrey, founded Great Expectations, the Los Angeles-based video dating service.

“She was kind of a very warm, open, candid, honest person,” said Wieder, gazing at her sister’s picture. “She was direct. You knew where you stood with her. She was very positive.”

Ullman was attracted to the upbeat approach of the Wellness Community.

“She brought home videotapes that had testimonies of different participants, and I’d watch them,” recalled Wieder, who visited her sister daily during this period. “She was really excited about the program because it was so positive. She said, ‘Oh, I’ve got to promote this. This is just wonderful.’ She felt the world should know about it.”

In the final weeks of her life, Ullman volunteered to do public relations for the Wellness Community. And after she died, the county Board of Supervisors, at Wieder’s request, passed a resolution supporting the Wellness Community.

But Wieder didn’t stop there. In early 1987, she began working to establish a Wellness Community in the county: “It was something so positive, something so supportive, and here we are a large urban center, why should we not have the benefits of such a thing here?”

Lawyer Paul C. Hegness became interested in Wieder’s plan and introduced her to Dr. Steven Armentrout, then president of the county’s American Cancer Society chapter. Armentrout, chief of hematology/oncology at UCI Medical Center, was impressed by the work being done in the old yellow house in Santa Monica.

“The Wellness Community has been a dramatic success,” Armentrout said. “It has dramatically impacted the lives of those who participated in it.”

A steering committee was formed, consisting of Wieder, Hegness, Armentrout, lawyer John Stillman, accountant Steve Mansfield and architect Ernest Wilson, whose firm drew up plans for the proposed county facility.

While they have enlisted the support of members of the county’s business and professional community, Wieder acknowledges that progress in developing the Orange County Wellness Community has been slow.

Last April, a full-time administrative coordinator, Sherri Labowe, was hired to move things along. Labowe’s son, Michael, died of lymphoma a year ago at age 23. Labowe and her husband, Jim, had learned about the Wellness Community from Armentrout, their son’s doctor. When Michael died, they asked that donations in his memory be made to the county Wellness Community.

Fifty checks, totaling about $6,000, arrived.

“It’s amazing people would be willing to contribute to something that’s just a dream,” said Labowe, adding that her son had wanted to go to the Wellness Community in Santa Monica, “but we live in Villa Park, and it was just too far. He never felt strong enough to make the trip. I thought this is crazy that we don’t have one in Orange County.”

Labowe works out of office space donated by Kenneth Leventhal & Co., a national accounting firm in Newport Beach, which also provides secretarial and bookkeeping help. She said she frequently receives calls from cancer patients as far away as Riverside and Montclair asking when the county’s Wellness Community will open.

“They just can’t make it to Santa Monica and are hoping Orange County would be closer to them,” she said. “People get pretty desperate, and I can certainly understand that because of Michael’s situation.

“I can understand how they need a place to call their own. The Wellness Community is like their clubhouse. Nobody can understand what they’re going through except people who are dealing with this.”

When Harold Benjamin gave up his 30-year law practice in 1982 to open the Wellness Community, the program was viewed with skepticism.

“Nobody really believed we weren’t going to charge anything,” said Benjamin, who put up $250,000 of his own money for the first 2 years of operating expenses. “They couldn’t believe I was not going to get paid. And they couldn’t believe we weren’t going to make any money on it.”

Benjamin, who also has a doctorate degree in social psychology, began studying the psycho-social treatment of cancer patients in the early 1970s after his wife, Harriet, underwent a bilateral mastectomy.

When the Wellness Community opened, Benjamin said, “nobody had heard of anything like this. We were the forerunner of making available to cancer patients the ability to learn how to join with their physician in the fight for recovery. No one had looked at cancer patients that way before.

“I concluded--and all my conclusions have proved to be correct--that cancer patients would be benefited if they joined together along with their physician to fight for recovery, so they wouldn’t have to be alone.”

Benjamin said 25 years ago, “cancer patients were diagnosed, and there wasn’t much that could be done. Now, with the advent of better detection systems and chemotherapy and improved methods of surgery and radiation, they were certainly living longer and more were recovering. And therefore, the tremendous psycho-social problems attendant with the disease needed to be dealt with.

“What we are trying to do is what physicians would do if they had the time.”

The underlying philosophy of the program is based on the scientific field of psychoneuroimmunology, which examines the relationship between mind and body. Studies have shown that positive emotions and mental activities enhance the immune system and therefore may increase the possibility of recovery.

“There is, however, no empirical evidence that the individual’s participation in the fight for recovery will have an effect on the recovery process, although there is anecdotal evidence to that effect,” said Benjamin, who emphasizes that “medical treatment is primary and the psycho-social methods are in addition to, and in support of, regular medical treatment.”

Despite initial skepticism, it didn’t take long for the Wellness Community to gain recognition and acceptance.

After 6 months, Norman Cousins, whose 1979 book “Anatomy of an Illness” chronicles the therapeutic effects of laughter, became honorary chairman of the board of directors.

Cousins has described the Wellness Community as “the model of social and psychological care of the cancer patient, which must be an integral part of the recovery process.” Many prominent physicians also joined the facility’s professional advisory board.

Although the Wellness Community has received extensive local press coverage, national exposure did not come until 1987, when “60 Minutes” paid a visit. Further national recognition came in March with a Life magazine cover story on Radner, who began participating in the Wellness Community 2 years ago, after learning she had cancer of the ovaries.

The national publicity, Benjamin said, has had a tremendous impact.

“I get two or three calls a week now from groups in various cities wanting to know about how to start” Wellness Communities, he said.

A second Wellness Community opened in Redondo Beach in 1987. In addition to Orange County, Wellness Communities are being developed in San Diego, the Conejo Valley, the Glendale-Pasadena area, San Francisco, Hinesdale, Ill., and Princeton, N.J.

Benjamin said he is interested in opening facilities “wherever the medical profession and the lay community believe the program will be helpful.”

According to Benjamin, cancer patients usually start receiving help from the time they attend a Sharing Group introductory meeting.

“That’s the place of immediate gratification because people change right before your very eyes,” he said. “They come in ashamed of the fact they have cancer, and they meet these other people who are involved in the fight for recovery, and they immediately learn there’s nothing shameful about cancer. It’s a disease like any other disease.

“They learn that not everybody dies of cancer; they learn that life doesn’t necessarily end with the diagnosis. And they learn that they needn’t be helpless--that they can participate along with their physician in the fight for recovery.

“That’s why physicians like our people. The people who come to the Wellness Community comply with instructions better, have a greater will to live, have more hope for the future. All those things are terribly important.

“What we want everyone in the world to know is that you do have some control over your well-being.”

Benjamin, who said the staff of the Orange County Wellness Community will be trained at the Santa Monica facility, is pleased with the progress being made in Orange County.

“I’m impressed with the energy put into this project by people like Harriett Wieder and Dr. Armentrout and Paul Hegness and Steve Mansfield,” he said, “and I have every reason to believe they’ll be open to be able to help cancer patients in Orange County soon.”

Fittingly, when a permanent county Wellness Community facility is built, it will be known as the Orange County Wellness Community, Estelle Ullman Center.

“It was her inspiration and her enthusiasm and her belief in it,” Wieder said. “She had something to hang on to, some place to go, something meaningful during those (final) weeks.

“I think the big, big thing is that this program offers a window when a door gets shut: a window of sunshine comes through. There’s hope. And there’s such exciting stories that come out of it. That’s what excited Estelle.”