Patient Uses Renewed Health to Aid Others

For nearly six months, Marc Smith, a Tarzana attorney, lay in bed at Seattle’s Fred Hutchinson Cancer Center--reflecting upon his life, and praying to rid his body of the leukemia that was destroying it.

“You spend your days and nights thinking about your family, about doing the things that normal people do--the things that you used to do--and wondering if you will ever do them again,” he said.

Five weeks ago, Smith returned home, his cancer driven into remission by an autologous transplant, a procedure that used his own bone marrow.

But now, as he thinks about mending the torn fabric of his life, Smith still faces a terrible dilemma posed by not knowing whether the remission is a new beginning or a last bit of life:

“If it’s your last couple of months, you don’t want to waste your time rebuilding your law practice--you want to be with your family,” Smith said. “Then again, if you are going to be around for a while, you have to think about the future.”

Yet even with that uncertainty, the feisty, articulate lawyer is resolved to use much of whatever time he has to draw attention to the critical need to improve the nation’s system of recruiting potential bone marrow donors.

Bone marrow transplants are considered to be one of the most effective cures for leukemia and other blood diseases. The biggest obstacle to this therapy, however, is finding a person with matching marrow who is willing to be a donor. The odds of two people of the same ethnic group having matching bone marrow are said to be at least one in 20,000, and Smith’s doctors tested only one compatible person willing to undergo the procedure. At the last minute, however, that person backed out.

In less than a year, the National Bone Marrow Donor Program, a government-supported computer registry of potential marrow donors, grew from 42,000 names to more than 140,000 names.

That growth has primarily been due to the extraordinary efforts of the families of cancer patients, who--hoping to find compatible matches for their loved ones--launched drives to enlist potential donors, and to raise money to pay for each of those volunteers to be tested.

Smith thinks it is disgraceful that families already in crisis must shoulder this burden. He believes that a resource such as the registry--which benefits all cancer patients, present and future--should be supported with government funding that would pay for the bulk of the cost of donor testing.

In addition, Smith is determined to alert the public to problems with the Life-Savers Foundation, a Covina-based organization that he said is taking undue credit for recruiting efforts made by private families.

To spread his message, he has contacted government officials, appeared on national television talk shows, and is writing a book about his own experience. He also spends hours each week on the phone with leukemia patients who are seeking his advice about transplants and finding donors.

Smith does not know how long he will be able to continue with his campaign. Although he feels healthy and strong, he could relapse at any time. The chance of a relapse is greatest during the first 1 1/2 years after the transplant. After that, the chance he is cured increases significantly.

“He is still at substantial risk of recurrence, but as the days and months roll by his odds improve,” said his physician, Dr. Robert Decker. “If he goes for two years, chances are he is free and clear.

“But there is no question that every waking hour the question on the front and back of everybody’s mind is the question: ‘Am I relapsing?’ ” Decker said. “Emotionally it’s just a roller coaster. Every ache and pain, every lump and bump, every bruise you see, you think: ‘My number is up.’ ”

Lying on a chaise longue on his patio on a hot, muggy night last week, Smith mused about coping with such an indefinite future.

His family moved into the newly constructed hilltop house about two years ago, but Smith got sick before it was finished. Now, the spacious living room, dining room and dens are still unfurnished, and paintings sit on the floor, propped against the walls, awaiting someone with the time or energy to hang them.

So far the self-described workaholic has spent most of his time back home enjoying simple pleasures, the company of his wife, Nan, and his three sons, ages 12, 10 and 7.

The once-athletic sports fan spends hours playing basketball and other games with his sons in hopes of regaining some of the strength and muscle tone lost during months of inactivity.

“Being back, driving a car, sitting outside, playing basketball--it’s just incredible,” he said. “When you hear all the cliches about smelling the flowers, you never know how true that can be.”

He doesn’t spend too much time with old friends, though, because he is still uncomfortable about his physical appearance--particularly his lack of hair. He often checks its growth, and when he goes out his head is almost always covered.

His unease has not deterred him, however, from taking public his urgent plea for volunteers to come forward as potential bone marrow donors.

His appeal is delivered with the heart-felt sincerity of one who knows the frustrating race against time run by leukemia patients to find matching marrow donors before their health deteriorates such that a transplant becomes impossible.

Last November, Smith was told that a transplant would give him his best shot at recovery. But the national registry did not have any volunteers with compatible marrow.

Smith launched a cross-country campaign for a donor under the guidance of the Life-Savers Foundation, a support group founded by a Covina pediatrician who ran a successful drive to find a marrow donor for his own wife.

Smith’s relatives here and in New York raised hundreds of thousands of dollars to pay for more than 2,000 people to be tested, and they held more than a dozen testing sessions on both coasts.

“It was a disgrace,” he said. “Here you have families in crisis, and they are being asked to go organize these drives.”

By the end of January, no match had been found. With doctors telling him he had only a month to live, Smith decided to undergo an autologous transplant--a therapy with a lower success rate that involves removing some of the patient’s bone marrow, using drugs or radiation to kill the diseased cells, then returning it to the leukemia sufferer’s body.

Then, hours before he was scheduled to begin chemotherapy to prepare him for that treatment, doctors identified a woman with marrow compatible to his.

Smith was elated at what he called a miracle. But two weeks later the woman decided not to undergo the marrow harvesting procedure.

Smith said he never would have been subjected to such emotional trauma if more people were registered as potential bone marrow donors. With people tested as potential donors “everything was dependent on one person.”

“I don’t want anyone else to go through what I went through,” he said.

Now he wants to start formulating some long-range plans, to restore a rhythm to his disrupted life. But it is a daunting task, for the disease destroyed more than just his health.

Shortly after his initial diagnosis, Smith’s two legal partners, assuming he would die soon, disbanded the firm that they had founded together two years earlier.

It had been Smith’s dream to have his own firm, and he often worked 12 to 15 hours daily to make it flourish. Now, if he decides to practice law again, he will have to start from scratch.

But Smith has doubts about continuing with the profession. “If somebody came to me with a money matter, it would no longer have that compelling interest to me as it did before I was sick,” Smith said. “An illness like this changes your perspective on what’s really worthwhile.”

Meanwhile, Smith is haunted by fears that his remission will end.

“It’s all I think about,” he said. “But you can’t dwell on it, you have to just try to enjoy life as much as possible and hope that God will decide that you are one of the ones who should make it. You just have to sweat it out for these 18 months.”

The frightening thing about relapse is that “you can’t use the way you feel as a barometer. Most people that I have talked to said they never felt better than on the day they relapsed.”

Each week, Smith and his wife visit Dr. Robert Decker at Cedars-Sinai Medical Center to have his red and white blood cells counted. So far the results have been positive.

“The best we feel each week is walking out the doctor’s door,” said Nan Smith. “It means we made it through the week, and then we just hope the next week goes real slow.”