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A Perfect Stranger : Woman's Hope for Life Hinges on Finding Rare Tissue Match

May 26, 1988|STEVE CHAWKINS | Times Staff Writer

A 28-year-old Ventura woman will lose her nine-year bout with leukemia unless she raises at least $20,000 to search for a bone-marrow donor.

If successful, the elaborate search would link Elizabeth Masiel with the one person in 100,000 whose tissue type matches her own. If it fails--or never gets under way for lack of funds--she will soon die.

"I found out just last week that I'm in the accelerated phase of the disease," she said. "It means I don't have a whole heck of a lot of time. I could go into blast crisis--the final stage--any time. I feel very, very tired, but other than that, I'm fine."

A striking blonde, Masiel still works as a travel agent at Carmen Plaza Travel in Camarillo. Colleagues are talking about raffling off a vacation in her behalf. Her husband, Paul Masiel, is a Ventura city firefighter. His co-workers have started to solicit donations through a fund at Dean Witter Reynolds Inc., in Ventura, and are considering a benefit barbecue. The Ventura City Firefighters Assn. already has donated $6,750.

Harsh Reality

But such generous gestures don't soften the harsh medical reality.

"Patients at her stage don't survive without transplants for more than a year or two," said Dr. Richard Champlin, director of the bone-marrow transplant program at the UCLA Medical Center. "Blast crisis responds very poorly to chemotherapy."

Champlin said donating marrow is a relatively risk-free procedure. Donors are anesthetized and generally leave the hospital after an overnight stay. "From your body's standpoint, it's just like donating a pint of blood," he said. "The marrow grows right back."

But it's a game of grim odds. The chances of finding a brother or sister with matching tissue are one in four, but the chances of Masiel finding a precisely matching stranger are one in 100,000, Champlin said. Half the time, a search for the perfect stranger fails. And even if it succeeds, half of all bone-marrow recipients die anyway.

Only 3,000 bone-marrow transplants have been performed in the United States, and only 170 have been between non-related donors.

No Match

Masiel has no family members with matching tissue types. Her brother and sister match each other, but not her.

"God," she joked, "dealt me a bad hand."

Still, a well-meaning stranger with the right organic credentials might come along.

Thanks to the National Bone Marrow Donor Registry, a Minnesota-based service started by the Red Cross last September, doctors at UCLA have managed to perform about half a dozen marrow transplants between unrelated people, Champlin said. Across the United States, 14 transplants have been arranged through the registry, said Red Cross spokesman John Siess, who added that transplants are sometimes feasible between donors whose tissue types are not quite identical.

Even so, pinpointing a donor in the 16,000 names on the registry and thousands more on a similar list in Great Britain is cumbersome, time-consuming and expensive. Testing prospective donors is costly. When one is finally located, he must be flown to Los Angeles, retested, hospitalized, and compensated for time off work--costs that could run as high as $40,000 and which will not be borne by Masiel's insurance company or by many others, Champlin said.

The couple is in the same boat as many other middle-class families hit with crushing medical expenses. Their savings come to only $2,500. They could sell the comfortable Ventura home they've owned for almost two years, but to do so would be to abandon what financial security they've achieved. Of course, they say they would do it, but it's a price they and their friends do not want to see them forced to pay.

"If we had to, we would sell, but it would make me real sad," Elizabeth Masiel said. "I'll be in the hospital three months and need a place to convalesce in bed for at least a year. Here, we'd be giving up everything we have for a 50% chance of survival. I don't know . . . If I didn't live, I'd be putting my husband through financial difficulties he'd never get out of."

She can speak fluidly of her own death, and is at ease peppering her conversation with allusions to "HLA levels" and "the Philadelphia chromosome" and the other grim chemical baggage that comes with leukemia. After all, she has become expert in it by surviving it for nine years--twice the typical time, she points out, between diagnosis and death.

Routine Test

"I was just a wild teen-ager when I found out I had it," she recalls. "It was diagnosed during a routine premarital blood test.

"I was tired," she said, "but I didn't really notice. I was just busy being a 19-year-old." Her first marriage collapsed, partly under the weight of her disease. But her present marriage has flowered in its shadow.

"I kept being told I didn't have a lot of time, so we did everything we could do," she said. "We went to the mountains a lot. We camped and fished and traveled. I decided I wanted to go out and see the world, so I became a travel agent--a professional vacationer. When I didn't feel good, I'd work anyway."

She has scuba dived in the warm seas off the Great Barrier Reef and climbed in the Swiss Alps. Meanwhile, she has been on chemotherapy constantly. Her leukemia has time and again slipped in and out of remission, although she has for the most part appeared healthy, active and untroubled. The prospect of dying, while palpable, has never been paralyzing.

Her disease cast her into menopause a couple of decades early, but she and her husband have explored the possibility of adoption.

"We'd really like a child," she said.

"But not right now. Let's get through this one first."

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