Wellness Program Helping Cancer Patients to Play a Leading Role in Battle Against Disease

When Marcie Stewart got the news early last year, she went into shock.

The Manhattan Beach woman--who is highly paid in computer sales and accustomed to success--said she turned into a “basket case. . . . I couldn’t even function.”

When Dorothy Adland, who owns a secretarial service in Torrance, got the same news a few months earlier, she went through “rage, depression and fear,” she said.

Both women had cancer.

Despite the shock, each had known that something was wrong. Stewart, 38 at the time, said she had developed “some neurological problems, twitching in the face,” and was seeing double. It turned out she had a brain tumor that probably had been developing for several years.

Adland, 53, had early-stage breast cancer. “Mammograms did not pick it up, but I knew beyond a shadow of a doubt that something was wrong,” she said. “I had a horrible lump.”

Stewart got into chemotherapy, while Adland’s doctors decided on surgery followed by radiation. Both said they believe in their doctors and in the treatments they have prescribed.

But neither wanted to leave it all in the doctors’ hands. As Adland put it: “When I was diagnosed, I took charge of my own life rather than being a helpless victim.”

She and Stewart joined the Wellness Community South Bay Cities, a support program for cancer patients that opened a year ago in Redondo Beach. The program is based on a frequently quoted statement by Harold H. Benjamin, a retired attorney who opened the first Wellness Community in Santa Monica six years ago:

“Cancer patients who participate in their fight for recovery along with their physicians--instead of acting as hopeless, helpless, passive victims of the disease--will improve the quality of their lives and just may enhance the possibility of their recovery.”

The Wellness Community is a place where a cancer patient may shed tears in an intense therapy session one day, only to reel with laughter the next day at a joke session where cancer is the butt of the humor.

Wellness leaders are specific in stating that the community is not intended as a substitute for traditional medical care for cancer. “We stress that it is foolish not to have medical treatment,” said Marian Mohr, executive director.

What the program does assert, among other things, is that people should regard cancer as a disease, not something shameful to hide; that they should become partners with their doctors; that they should strive to reduce stress, laugh and enjoy life, develop friendships and expect recovery rather than death.

Without ignoring the fact that cancer kills--19 participants in the program have died--the community emphasizes that cancer is not the death sentence many fear. According to the National Cancer Institute, half of the Americans who learn that they have cancer are still alive five years later.

The community’s center--at Pier Plaza almost within view of the Redondo Pier--is intended to be homey rather than institutional, with light colors, plants and art on the walls. Many activities take place in a large, hexagonal room where sunshine filtering through tall windows creates a relaxed, cheerful and inviting atmosphere.

Recalling her first visit to Wellness, Stewart said: “When it was my turn in the group, I was sobbing very hard and it was hard for me to talk. I waited until the very end. When we had coffee and cookies afterward, I found immediate warmth. . . I got lots of hugs, all kinds of really neat feelings. I knew it was the place for me.”

Part of the Wellness program fits the mold of traditional group therapy. Licensed counselors lead structured sessions--some for cancer patients, others for their families and friends--designed to reduce stress. Stress makes people feel ill, Mohr says.

More than 100 people are currently in the program’s various groups. What do they talk about? Almost everything, participants say: the debate over chemotherapy and its horrendous side effects; concern about blood transfusions in the era of AIDS, or acquired immune deficiency syndrome; apprehensions about medical tests that might have dire results; complaints about physicians who seem insensitive or speak in “doctorese”; hassles over disability and insurance payments, jobs and relationships.

“You talk to other people who know what the devil it is you’re talking about,” said Adland, a native of England who hasn’t lost her accent after 30 years in the United States. “What it’s like to be nauseous from chemo, what it’s like to lose your hair, what it’s like to be burned from radiation, what it’s like to know that death is there.”

Stewart added: “We talk about our feelings, mostly, our families, our feelings about death, our goals for the future. We try to focus on the future.”

Said her husband, stockbroker Paul Blieden: “You go there to cry, you go there to yell.”

Blieden, who is in a group for family members of cancer patients, says that living with someone who has cancer is like having the disease yourself. “I feel like I have cancer. It’s always there,” he said. “I have to learn to deal with her problems so I can support her. It helps you stay sane because you deal with the possibility of loss.”

But besides the therapy groups, Wellness also has parties, potlucks and lunches that provide information on nutrition. It offers lectures and workshops on how cancer affects such things as finances, raising children, socializing, dating and marriage.

“The basic thing is that we are a community, an extended family, supportive in all areas,” said Mohr, a licensed therapist who first came to the original Wellness Community in Santa Monica after a double mastectomy and ended up working at the program in Redondo Beach.

Sessions are given on relaxation and “directed visualization”--in which people imagine that such things as white light, knights on horseback, vacuum cleaners and even Pac Man are fighting their cancer cells. The community believes these practices reduce stress and make people feel better, which in turn strengthens the immune system.

Adland, who says she is now cancer-free, said that during radiation treatment, “I would lie on the table and visualize with each treatment the light going in and seeking out cancer cells and destroying them. My little light has boxing gloves on and fights each cancer cell. After three weeks, I saw gloves going in and having nothing to fight. The cancer was all gone.”

Sharon Scofield, a former secretary who lives in Long Beach, said that a year ago, at age 38, she was told to “get my affairs in order.” Breast cancer had appeared for a second time. “Wellness was the only place that suggested I may be able to do something,” she said.

She said her greatest gain has been the concept that she does not have to be a victim. “You’re not at the mercy of the medical community,” she said. “You can have some influence. I’ve gone from doing whatever my doctor says to talking to him and discussing the different treatments. . . . He told me he really thinks I’m a fighter.”

The Wellness Community is supported by grants and donations. All activities are free, a policy that Mohr said has both economic and philosophical origins.

“Cancer people already have enough expense,” she said. “And when people pay, they feel like a victim, or they expect a cure because they’re paying for it. . . . We make everything available, but it’s up to you to improve the quality of your life.”

In a book on cancer and the Wellness Community, “From Victim to Victor,” founder Benjamin--who retired from law practice in 1982 after 30 years--writes that cancer patients have a great need for support, hope, encouragement and involvement with others fighting for recovery. “Togetherness is good for people and unwanted aloneness can be physically and psychologically harmful,” he writes.

But the Wellness Community makes no claims that participants will live longer, nor does it give any medical advice. Before the program began in the South Bay, organizers made sure they had the support of local cancer specialists. Twelve physicians sit on the program’s medical advisory board.

One of the board members, Dr. Thomas G. Simko, a radiation oncologist at Torrance Memorial Hospital Medical Center, said the program can be beneficial. Participants “tend to feel better,” gain “a whole way of coping with a difficult situation” and improve the quality of their lives.

From a medical point of view, he said, the benefits would be “hard to prove,” and if the Wellness Community “were to strongly suggest or stress that increasing the length of life is what this is all about, they would have a problem in the medical community.”

Simko said the medical community realizes that cancer is a very difficult disease medically, psychologically and socially. “Doctors are good at handling the medical aspects, but they do not have time to handle the psycho-social, and in that sense, the Wellness Community is their right hand,” he said.

Sound Philosophy

Dr. Kenneth M. Tokita, who is also a radiation oncologist at Torrance Memorial Hospital and a member of the boards of the state and coastal units of the American Cancer Society, is not on the Wellness Community board but said the basic philosophy of the organization is sound.

Patient participation, attitude and outlook are significant, he said. “There is a fair amount of recovery that occurs just because a person wants to get well. He will exercise, eat better, and that is more than mental. The right attitude will help recovery faster.”

But Tokita cautioned: “In a balanced approach, problems always occur when there is an overemphasis of either. It is just as bad for a physician to say that the only way a patient can be cured is to do what he says than it is for a patient to go crazy and feel the only way he can be cured is by his own emotional help.”

The Wellness Community got to the South Bay through the efforts of Elise Asch, a counselor with Jewish Family Service Southern Region, and Jean McMillan, a board member of the South Bay Hospital District. Both women are on the South Bay Wellness board; Asch is its president.

A longtime friend of Benjamin, Asch said she watched him put the Santa Monica Wellness Community together. Then McMillan told her that the hospital district board was looking for local programs to help finance. “I felt here was my opportunity to give the South Bay a Wellness Community,” Asch said.

McMillan said her interest in health care started several years ago, when she and her husband lost their best friends to cancer. Both the husband and wife died of the disease, leaving three children.

The hospital district, which leases South Bay Hospital to a private company and hands out some of the proceeds as grants--gave the organization $100,000 to open its doors in April, 1987. McMillan said she abstained from discussion and voting on the grant, although she “felt it was time for a Wellness Community” in the South Bay.

Corporate and foundation gifts followed. The community has a 1988 budget of $217,000, including a hospital district grant of $75,000. The community also has accelerated its fund-raising through a 300-member auxiliary of South Bay women, who put on fashion shows and hold theater parties, and another donor program with contribution categories up to $2,500.

‘Serving More People’

After only one year, Asch said the community has been more successful than expected. “We are serving many more people, and have many more groups than anticipated,” she said. “This is what success means to the Wellness Community--how many people we are helping.”

There are 120 people in 10 regular weekly support groups, and additional people attend social activities, drop-in groups and the workshops and lectures. Mohr hopes to open four more groups by the end of the year.

Although the Wellness Community takes a positive view on cancer, there are deaths. Two Wellness members, both in their 60s, died a few weeks ago, opening a flood of emotions in the groups.

One was named Alex. “I knew him for nine months,” Stewart said. “I was terribly sad . . . what a waste. What I remember about him is his smiling face all the time. He had a cheerful attitude all the time.”

Said Scofield: “He always said if there is reincarnation, he would come back as a redwood because they live so long. I cried. I felt it could be me. I get scared.”

After a second man, Larry, died, Mohr said his wife came to the group and told people that without them, her husband would have been “a basket case.”

“People die,” Mohr said. “But there is dying and then there is dying with a quality of life.”

Sometimes people just tire of the fight, Adland said. “They want to let go of life with dignity,” she said. “That is discussed very openly . . . that is accepted. We watch that and feel good about it. . . . It’s saying goodby to a friend (who) has had it up to here.”

Said Blieden: “People find this hard to believe, but there are a lot of positives. People in the group say that they’ve started being good to themselves, but they say they wish they didn’t have to have cancer to find this out.”

Stewart, who uses “workaholic” to describe the way she used to be, said she learned to live for herself, not a job. She has started to take walks on the beach, got an exuberant golden retriever named Tovah (“good” in Hebrew), is enjoying her first grandchild and planning to go back to work--or perhaps study for a Ph.D. She and Blieden are going to Scandinavia this summer.

“I’d never spend money on me,” she said. “I always salted it away for a rainy day. Now I like that bumper sticker that says we’re spending our children’s inheritance. I bought a car phone just for fun.”

But she also said that feeling positive can be “a lot of work.” She remembered that the week Alex died, a friend of hers at the Santa Monica Wellness Community--the woman who had introduced her to the concept--also died.

“All my feelings were, nothing matters anyway, no matter what you do, you die anyway,” Stewart said. “It was real heavy for me. I did a lot of crying and a lot of talking.”

After knowing each other for nine years and living together for more than three years, Stewart and Blieden asked group members to help them decide whether to get married.

Both said they had doubts after Stewart’s cancer diagnosis, Stewart worrying that Blieden might “marry me to pity me or just run for the hills” and Blieden wondering if they could weather the strains of cancer. But on Feb. 13 they were married.

“I want a long relationship,” Blieden said, “and I think we’ll have one.”