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'Dress rehearsal for death'
By JEANNE MALMGREN, Times Staff Writer
© St. Petersburg Times, published February 1, 2000
"I have really good days where I'm focused on taking excellent care of myself and doing everything I know to improve my condition," she says. "And then I have very challenging days where I feel bad and extremely weak, and it seems like my life force is ebbing away."
Marilyn, 50, has ovarian cancer. Three months ago, after first alternative and then conventional medicine failed to arrest her disease, she signed up for in-home Hospice care. The journey since then has been one of highs and lows. Recently the lows are coming more frequently and with more ferocity.
Every few days there's another plunge of the roller coaster.
"I start having really hard physical symptoms," she says. "Intense heart palpitations. Difficulty breathing. And there's this deep shakiness inside. It's hard to explain, but it's kind of a hollow feeling, and then my whole body trembles. I'm just trembling and trembling. It's really scary."
Sometimes it's medical: an oxygen tube fastened under her nostrils to ease breathing or a dropperful of Roxanol, the liquid morphine that keeps pain at bay.
Other times Marilyn's training in alternative healing provides the answer. She pops a handful of digestive enzyme pills from Germany or asks her nurse to administer a coffee enema. To stimulate her sluggish kidneys, she drinks a woody-smelling brew of Chinese herbs.
High in Marilyn's chest is a surgical port, originally implanted there for administering chemotherapy. Now the only thing that goes into the opening is her daily infusion of liquid multivitamins.
Next to the port, around Marilyn's neck, hangs a necklace of sandalwood prayer beads. They provide comfort during bad days, times when the roller coaster seems to careen out of control.
On Saturday Marilyn had what she later called "a dress rehearsal for death." It came without warning.
As she was being propped up in bed by her son, she felt a sharp, stabbing pain in her abdomen, then her face went rigid, with her mouth open and her eyes rolled back. For two or three agonizing minutes, it appeared to everyone in the room that she was dying. She didn't seem to be breathing and there was only a faint pulse.
Finally she relaxed, and took a ragged breath.
Of the whole episode, Marilyn remembers only floating in a skylike environment, with soft light and beautiful humming sounds.
Since then, her thoughts have turned more and more to dying.
What will it be like? Can she go into it gracefully? Or will it be a struggle? What actually happens in those last few hours, and at the moment of death?
For a terminally ill patient, the questions take on a supreme urgency.
Marilyn believes she has clues of what to expect, but they don't come from what she was taught as a child growing up in the Baptist church. They come from personal experience -- what she describes as out-of-body experience.
Fifteen years ago, after an intense session of the deep bodywork known as Rolfing, she lay resting on the massage table. Suddenly she felt as if her consciousness had floated to the ceiling and she was able to look down on her body. It was not frightening, she insists.
"I didn't do anything to make it happen, and it was painless and enjoyable. So that tells me that leaving my body is okay and that it can happen naturally."
Her other clue came more recently. A few months ago, when she was much stronger, she went on an outing with her son Charris. He was on a skateboard; she was riding the hand-cranked bicycle she has used since an accident paralyzed her legs 12 years ago.
After a mile or so along Beach Drive South, near her St. Petersburg home, Marilyn began to feel sleepy and veered toward the curb. She said she didn't have the strength to go farther.
Charris got her off the bike and carried her to a grassy spot in Lassing Park, along the waterfront. He laid her down and wrapped her in blankets.
"I didn't exactly go to sleep but I was in kind of a deep trance. I was away," she says. "I closed my eyes and my hearing started to withdraw. I had a very dim awareness of people around me. I was pulling all my energies inward and upward toward my heart."
Her persistent memory of that day is that her sense of smell remained strong.
"I could smell the air, the brackish water, and that was so beautiful. It was the only connection I still had with the outside world."
Elisabeth Kubler-Ross, who worked with dying patients for decades and wrote many books about the process, confirmed that near the end of their lives, people often become introspective and "switch off all external input."
Based on her experiences, Marilyn now is making plans for what she calls her "transition time." She wants the hours and minutes leading up to her death to be special, and peaceful. She hopes that by giving her caregivers specific instructions in advance, they will know how to create an environment that keeps her comfortable.
Because Marilyn believes the olfactory sense is the last to leave, she wants pleasant scents in the air. Her friend Janet Maddox, a practitioner of aromatherapy, has helped her choose essential oils they'll place in diffusers. Frankincense. Rose moroc and sandalwood. Maybe a little lemon grass.
"One of the difficulties and struggles of making the transition that I've read about and heard about from the Hospice nurses is breathing," Marilyn says. "So I think the essential oils will encourage me to breathe."
Marilyn has requested that music be played, but nothing too emotional or active. What she wants are Gregorian chants, "deep and slow, circular, just a continuous drone of sound." She also has asked her caregivers to sing spirituals, if they feel moved, or to play one of her Tibetan "singing" bowls, which produce hypnotic vibrations.
At some point, someone -- maybe one of her sons or daughters-in-law, maybe one of the four or five close friends who will be there -- may get in bed with her and rock her in their arms, like a baby.
Marilyn did that with her father as he lay dying, years ago, and "it seemed very effective. I had no idea why I was doing it, it was just a spontaneous gesture. I've talked to people who work with dying from a spiritual perspective, and they tell me it's a slow, rhythmic movement that supposedly encourages the spirit to move."
Marilyn is adamant that the atmosphere in the room must be calm.
"I remember from those two out-of-body experiences that I'm not in an emotional state at all. My energy is going to a different purpose. So I've had conversations with everybody who's going to be with me in those last hours. I've requested that if they get emotional, they leave the room to cry or get somebody else to hold them, whatever they need to do. Then they come back in and be with me from a place of peace and acceptance."
"I think there's a period of time when you want to let the body be, and let the spirit completely disengage."
Marilyn wants her friends, not a mortician, to prepare her body for burial. They will bathe her, rub fragrant oils into her skin and dress her in the handmade dress and beaded headpiece she has already chosen.
Then they'll place her in the cedar casket that waits in her living room, and turn the body over to a local funeral home for refrigeration and transportation to Tennessee, where she will be buried.
Marilyn knows that, even with such careful plans, she ultimately cannot control her dying process. No one can.
She expects it might be hard to let go. She might be afraid. She wonders if she'll know what to do when she leaves her body.
"What are the rules of being a body-less person, a soul without this corporal cage? I don't know."
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