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Dancing In The Twilight: Fading into focus
After chemotherapy and various natural healing methods failed to arrest her ovarian cancer, Marilyn Myers stopped all treatment. She still has daily massages to ease the pain.
[Photographs by Lisa DeJong of the Times staff]

By JEANNE MALMGREN

© St. Petersburg Times, published January 16, 2000


As medical hopes dim, Marilyn Myers is uplifted by turning her energy away from fighting the cancer and toward her life journey.

It is the most exquisite moment of the day, perhaps because it is nearly the last.

The cloak of twilight settles and with it, a great pause. The air takes on an indigo softness. Silhouettes of trees, houses, people -- all become sharper and clearer, even as they're fading into blackness.

A heart grieves at the loss of the beauty.

This moment, this twilight, is where Marilyn Myers stands in her life. She is near the end. Very near.

Most people in her position, so close to death, would retreat into their circle of family and friends. They'd spend those last weeks or days saying goodbye, savoring life's final treasures in private.

Dancing In The Twilight

In the next few weeks, we will share our conversations with Marilyn Myers, who is terminally ill. Staff writer Jeanne Malmgren is visiting her daily, and the content of the discussions will take whatever course Marilyn chooses, always centered on how she's coping with her passing.

Marilyn has another idea.

Many ideas, actually. They came to her over the long months of fighting cancer. Thoughts about disease and health, living and dying, love and forgiveness, thoughts that are helping her approach death with an acceptance she never would have dreamed possible.

Now, as her daylight fades, those thoughts seem too precious to keep to herself.

"Death is not awful," she says. "It can be beautiful. I want to share that with others."

Like sharply etched silhouettes at dusk, Marilyn has found a clarity of mind and heart, even as the body weakens.

She's in a place where the extraneous automatically falls away, where the chaff of life can be discarded and you have permission to focus on what's really important, on the people and things you love.

It is, she says, a wonderful place to be.

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Even though she is facing death, Marilyn Myers feels joy in the life lessons she is learning during this time of transition. Here she enjoys a sunny day in the yard of her St. Petersburg home.

* * *

Two decades ago, Marilyn was a well-known holistic health practitioner, founder of one of St. Petersburg's first therapeutic massage clinics, the Center for Well Being. At the peak of her career, suddenly everything fell apart. A tobogganing accident in 1987 in Colorado paralyzed her from the waist down. She was 37.

The next few years were a blur of hospitals and therapists. A woman of fierce will, Marilyn struggled mightily to walk again, despite doctors' predictions to the contrary. Eventually, she moved with one of her sons, Charris, to a 200-acre Tennessee farm they had bought. She was using a wheelchair.

She adjusted. With Charris' help, she threw herself into turning the farm into an organic paradise. She spent her winters in St. Petersburg.

Then, in 1991, she started having health problems that didn't seem related to the paralysis -- allergic reactions to her organic vegetarian diet, food she had eaten for years and considered healthful. For someone as attuned to her health as Marilyn, it was troublesome.

There were emotional issues, too. "I felt a lot of despair and depression around the possibility that I might not ever walk," she says now, at age 50. "In addition, my immune system took a blow from the injury."

photo
Marilyn, at age 24, in Fort De Soto Park.
[Family photo.]

In 1997, still not feeling well, she found a new calling: She began training for a career teaching diversity awareness. She figured that, as someone with a disability, she could contribute a lot to the dialogue. She decided to apply for a master's program in organizational development at American University in Washington, D.C.

By spring 1998, she felt so ill that she cut short her time in Tennessee and returned to St. Petersburg for a series of medical tests. Doctors were looking for digestive problems, she says, "But finally I insisted on a CAT scan."

The scan found three tumors, in both ovaries and in her uterus. One was the size of a large orange. All were cancerous.

She immediately had a hysterectomy at H. Lee Moffitt Cancer Center and Research Institute in Tampa. Ever the iconoclast, Marilyn turned off the fluorescent lights in her hospital room and substituted incandescent lamps from home. She brought her favorite classical music and aromatherapy supplies.

"The nurses were interested in what I was doing," she says.

Her oncologist recommended chemotherapy. Marilyn did some research and decided that chemotherapy seemed only a temporary fix for her late-stage cancer. She told the doctor she wasn't interested. She would fight the disease her own way, using natural methods she had studied for years and trusted deeply.

Health insurance covers few alternative treatments, but she had some money from a settlement for her spinal injury. That could finance a self-directed odyssey of healing.

She enrolled in a one-month residential program at the Hippocrates Institute in West Palm Beach, a holistic health center for chronically ill people. There she ate gourmet raw foods, drank wheatgrass juice and participated in group therapy sessions with other seriously ill patients.

Back home she tried to duplicate the Hippocrates program. She and two friends set up a mini-sprout farm in a courtyard outside her bedroom.

"We were juicing (sprouts) three times a day," she recalls. "It was very labor intensive."

Marilyn grew tired of the bland diet. She felt cold inside, eating only uncooked food. Her large contingent of friends were proud of her efforts to fight the cancer holistically but she isolated herself at home, feeling depressed and watching movies on HBO while cradling a hot water bottle to her abdomen.

A CAT scan showed her left kidney failing. It was time to get more help.

A urologist brought up the idea of chemotherapy again, but Marilyn still resisted. She wanted to try a few more natural treatments. She promised the doctor if they didn't work she would submit to chemo.

She left for California, accompanied by Charris. They spent three weeks at the Livingston Foundation Medical Clinic in San Diego, founded by a physician who developed a vaccine against a bacteria she believes causes cancer. There, Marilyn was put on megavitamin IVs, vaccines and a more balanced diet, which included eggs and fish.

In Berkeley, she saw the Dalai Lama's personal physician, who was seeing cancer patients there under the auspices of an American doctor. He prescribed Tibetan herbal pills and recommended more dietary changes.

Several times while she was in Berkeley, Marilyn had to visit a hospital emergency room because of profuse bleeding. A new tumor was pressing on her ureter. An oncologist there said chemo was the only way to stop the bleeding. He assured her she could continue her vitamin and herbal therapies right in the hospital. Marilyn, reassured by the doctor's attitude, consented.

After three successful rounds of chemo in California, Marilyn returned to Florida to undergo the rest at home. It was September 1999, oppressively hot and humid. She felt weak and tired. Her oncologist at Moffitt said her blood marker for cancer had gone back up. Then he asked whether she was still doing what he called "your vitamin voodoo."

"I came home and cried," Marilyn recalls. "I felt so alone and unsupported by my doctor. That's when I kind of started to give up."

She had one more round of chemo, her fifth, at Moffitt. Still her blood marker was rising, signaling the spread of cancer.

"I decided why hammer my immune system with a final round of chemo, when it's not working? I had this overwhelming feeling of tiredness. I had been struggling so long, and I was exhausted."

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Marilyn’s bed is the command post for a busy life. Here she consults her day-planner while discussing dates with Hospice social worker Kimmy Acquaviva.

It was time to end treatment, she decided, even though the oncologist advised against it, saying that chemo was the last thing he had to offer her. She picked up the phone and called her friend Jane Schafer, director of admissions and professional relations at the Hospice of the Florida Suncoast.

On Nov. 2, Marilyn signed up for in-home Hospice care. A nurse would come to her house every day, and a social worker would visit regularly. To her surprise and delight, the physician in charge of Marilyn's case, who was determined by Hospice's geographical divisions, was someone she already trusted, the doctor who treated her spinal cord injury, physiatrist Karen Williams.

Marilyn remembers feeling tremendous relief.

"I got control back, but also with the support I needed," she says. "The (Hospice) nurses are amazingly compassionate and present. They're completely patient-oriented. They do what they need to do, then they get out of the way to give the family the space they need."

The shift from fighting cancer to preparing for death was profound, Marilyn says. She calls it a healing.

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The healing hands of licensed massage therapist Janet Maddox bring comfort to Marilyn. “She has been my greatest teacher, so it’s a real honor to help her now,” Maddox says.

"In the fighting mode, I was in denial a lot. Not denial, really, but extreme resistance. I couldn't find a way to embrace what was happening. Even when I was on top of things, there was always this feeling of a demon inside me that was working just as hard as I was."

Once she gave up struggling, the concept of death began to crystallize.

"I said, "All right, you may not win. You may end up dying, and what would that be like?' I just began contemplating my death, and thought about how I would want to handle it."

Then a magical thing happened.

The extraordinary energy she had been using to battle her disease suddenly became available for another purpose: looking ahead.

"I began to feel a whole new freedom and excitement for this new journey," Marilyn says. "Something that started out as scary, something I was running from, had become something I could look forward to."

* * *

COMING TUESDAY: Closing out the business of a life. Marilyn gives away her possessions and mends old relationships.

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