Targeting Cancer, Morale and Quality of Life : Health: At the Wellness Community of Orange County, emphasis goes beyond medical treatment to address nutrition, budgeting, exercise and attitude.

In 1990, Natalie Carlson was preparing to die. The 55-year-old Costa Mesa woman, who had bone marrow cancer, had stopped her chemotherapy even though doctors told her that if she did so, she would only have six months to live.

“The chemotherapy was making me so sick I couldn’t walk from the living room to the kitchen without getting out of breath,” she recalls. “I was totally sick at least three weeks out of the month. I couldn’t go anywhere or do anything.”

Carlson says she sat home and felt sorry for herself for a long time. Then she heard about a new cancer support network, the Wellness Community of Orange County, and screwed up her courage to attend some workshops.

What she really wanted, she says, was a way to help her die.

“I was looking for something to help me get through my final days,” she said. “Going there and listening, eventually I began to feel better. A lot of the girls had such an up attitude. They had things worse than what I had, but most of them were laughing.”

Today, having defied predictions of death and still without her regimen of chemotherapy, Carlson continues to socialize with fellow patients she met at the Wellness Community.

At the Wellness Community, cancer patients meet to discuss life-and-death issues, to cry, to laugh. They learn all they can about cancer’s effects on them--and their attitudes’ effect on cancer.

In workshops and guest lectures, they learn about nutrition, household budgeting and exercise techniques. The regular participant groups target the patients’ psychological needs and are designed to supplement, not replace, medical treatment, says Barbara A. McKone, program director.

The Wellness Community represents a new sensibility in cancer treatment, health professionals say. Where once the disease alone was the all-consuming focus of doctors and other health care providers, now the patient’s overall morale and quality of life are increasingly seen as key to reducing the disease’s morbidity.

Addressing the patient’s psychosocial, as opposed to just medical, needs is critical, says Steven Armentrout, a UCI Medical Center oncologist and president of the Wellness Community’s advisory board.

“There’s a huge amount of evidence showing that patients who are active participants in support groups . . . have (better) tolerance of the side-effects of therapy. And a number of studies suggest their longevity is better as well,” Armentrout says.

Because of their full-time staff and daily operation, large programs such as the Wellness Community are able to provide a range of services.

The Wellness Community employs four full-time people and three part-time trained facilitators. There are 40 active volunteers. Its yearly operating budget of $400,000 is raised from private sources; there is no government money.

Variety and flexibility are key to the success of the support groups, says Cary Presant, an oncologist and former president of the American Cancer Society in California. At his facility, the California Cancer Medical Center in West Covina, Presant recently began offering a support group open only to breast cancer patients whose chemotherapy has caused them to gain weight.

*

The Wellness Community of Orange County, which recently celebrated its fourth anniversary, is one of 13 Wellness Communities nationwide. Founded in 1982 in Santa Monica, the nonprofit, privately funded centers have helped about 14,000 cancer patients at no charge, officials say.

Wendy Cummings is one such patient. After her surgery for a brain tumor four years ago, Cummings, 32, of Dana Point, didn’t blame her friends for thinking she was back to normal. After all, she returned to work full time as a Los Angeles Fire Department paramedic just five weeks later, and occasional headaches were her only symptom.

“People said, ‘Oh, she’s great. She looks fine,’ ” Cummings recalls.

But she knew better. During the 12 1/2-hour surgery, doctors had found the tumor to be an anaplastic astrocytoma, which can be highly malignant. They also discovered it was inoperable.

While her doctor took a wait-and-see stance, Cummings began to struggle with the life-and-death issues that descend on cancer patients.

She headed to the Wellness Community, where she joined other patients in weekly discussions of recovery strategies and took workshops on journal writing, social adjustment and more.

“After the surgery . . . I had the normal reactions that people have when they find out they have cancer,” Cummings said. “But trying to talk to friends my age was difficult, because no one in their late 20s wants to talk about mortality issues.”

At the Wellness Community, she says, “we talked about the things people don’t feel comfortable talking about with their families. It’s not that families don’t want to; sometimes they just can’t.”

After eight months, Cummings was able to move on, to “graduate” from the group with a better attitude and understanding of the disease and her relationship to it.

*

Achieving a true community of patients is at the heart of the philosophy at the Wellness Community. Participants are encouraged to avoid isolation and get to know others who have already benefited from coping techniques.

In the Santa Ana facility, in a light-industrial area off the Costa Mesa Freeway, about 100 participants comprise eight weekly support groups that meet in rooms decorated to resemble living rooms.

The patients’ primary at-home care providers, usually spouses, discuss their own issues in three other groups, McKone says.

“We look at cancer as a family affair,” she says. “Everyone has different coping skills, and some family members minimize (cancer in the family), put it on the back burner, so the workshops focus on caring and coping skills.”

Tears are common at the Wellness Community, but so is laughter, participants say.

“We laughed more than we cried. It was just incredible laughing,” said Cummings, who added that her group remained upbeat even though two of its members died. “If people heard the amount of laughing going on, and then found out we were cancer patients, they’d think we were nuts.”

Often participants become conduits for spreading news of breakthroughs in cancer care. One patient recently asked his doctor for literature on a new anti-nausea drug he had received along with his regular chemotherapy, McKone said. He shared it with his group, and, within a few weeks, half the group had started on the new drug.

Such networking can also educate professional care providers. Some physicians have told McKone that their patients sometimes bring them information on new therapies even before they read about them in their journals.

“Our members tend to become patient-active instead of just passive people who go to their doctor and say, ‘OK, fix me,’ ” McKone says. “Here we encourage them to be in dialogue and combine the skill of the doctor with the will of the patient.”

Support group members often continue their relationships outside the Wellness Community. Some of the 50 volunteers are former participants, says Shirley A. Lorenz, executive director. Two such volunteers, Marlene Gavelin and Jack Dwan, conduct weekly introductory meetings for potential new members.

In part because the Wellness Community is not affiliated with any hospital or care group, patients are referred from a variety of sources, including UCI Medical Center in Anaheim, the City of Hope, UCLA and USC. Participation has increased about 20% a year.

“These care providers need options for when their patient leaves the hospital,” McKone says. “It makes them feel better if they know the patients have somewhere to go.”

Patients’ frames of mind vary widely when they enter the program, but they often make a transition “from victim to victor,” in Lorenz’s words, as they progress in their groups.

For patients like Carlson, the program helped renew a sense of life.

“The Wellness Community is the reason I’ve done so well,” Carlson says. “I used to think of death all the time. Now I don’t think of it at all.”