A Family Moment Nearly Lost to Cancer

BOWIE, Md. —  Claire Chasles-Kelly reaches out for the warm bundle in a fleecy red jumpsuit, a girl, 2 days old, her first grandchild.

She strokes the tiny cheek, soft as butter. “Are you going to open your eyes?” she whispers. Then she chuckles: “You’re going to open your eyes, look up at me and say: ‘Who’s that bald-headed person holding me?’ ”

Everyone laughs, because Claire’s scalp is only now showing the peach-fuzz return of hair. The baby has more hair than her grandmother.

Claire has endured much to get to this single, life-affirming moment.

She has spent most of the last year waging a struggle against advanced lung cancer, brought on by 25 years of smoking dating back to her teens. Claire, now 43, has survived a life-threatening infection, debilitating depression and the ravages of six months of chemotherapy.

Her doctors have told her she cannot be cured. But for now, her disease is stable. She is recovering from six rounds of powerful chemotherapy, a harrowing regimen that caused all of her hair to fall out and left her gaunt and fatigued. Although she is plagued by a nagging cough that leaves her short of breath, her energy is slowly returning. Her appetite has returned too, and she has begun to regain some weight.

The chemotherapy, despite its horrific side effects, seems to have bought her some time.

The life span of most people after a diagnosis of advanced lung cancer is often measured in months rather than years. Claire’s cancer recurred last November, 18 months after it was first discovered and treated with surgery and radiation. In many ways, she has already defied the odds.

Poignant moments like this--a seriously ill patient meeting her infant granddaughter for the first time--typically do not factor into the ongoing national debate about curbing health care costs and rationing treatments for life-threatening diseases.

Indeed, in recent years, the question has been raised over and over again: How aggressively should physicians treat desperately ill patients, especially when the treatments are expensive, the side effects sometimes unbearable and the outcome uncertain?

“I think there’s a tendency by those who look from a distance at the cost of treatment and the burden on the patient to say, ‘This can’t possibly be worth it,’ ” said medical ethicist Art Caplan. “And if you’re a bean-counter for a health insurance company, or a bureaucrat in an HMO [health maintenance organization], it must be indefensible.

“But, from the point of view of the person who lives to see a grandchild born, makes it to a family reunion, enjoys one more Christmas--or simply has a chance to say goodbye--you cannot put a price tag on the value of these events.”

Katy Swanson, case manager for lung cancer patients at Georgetown University Medical Center’s Lombardi Cancer Center, where Claire is a patient, doesn’t know the cost of Claire’s chemotherapy. Experts say chemotherapy can range from tens to hundreds of thousands of dollars, especially if a patient must be admitted to the hospital to receive it. This was the case with Claire, who experienced an adverse reaction to one of the drugs during her first session.

The cost of treatment is irrelevant to Swanson; it is not her job to make the wrenching decisions about who should or should not be treated. And she has little patience with those who hold that smokers don’t deserve treatment because they brought their illness upon themselves.

“We don’t have the kind of a health care system in this country that makes those kinds of judgments, so I don’t let myself think about these issues,” Swanson said.

“We need to give people a chance,” she added. “And people need the option to say when they’ve had enough. I ask that of my patients, when the chemo becomes difficult. Most of the time, they say, ‘Katy, what’s the alternative?’ And I say, ‘Well, you know. . . .’ Most of the time they say, ‘Katy, I’m not ready to give it up yet.’ ”

Claire had a rocky time with chemotherapy, as many do. She lost her appetite, her energy, her hair and, more seriously, her blood counts plunged on several occasions, requiring transfusions.

But she never thought of calling it quits, even during the worst of it. “I’m glad I did it, but I’m also glad it’s over,” she said.

On this day, cradling Paige--the firstborn of her 22-year-old daughter, Christine--Claire’s eyes are moist. But her voice is strong.

“It was worth it,” she said. “I hope I’ll be around long enough to spoil her and see different things happen for her in her lifetime. But if not, at least I’ve had a chance to see her and to hold her.”

Strong Bonds

Christine Schulze, Claire’s only child, is very close to her mother. She has suffered along with Claire throughout the older woman’s illness. Christine--like her mother and Claire’s mother before her--is a smoker who also began during her teen years.

She was motivated to quit upon becoming pregnant, and after watching her mother deteriorate. But her addiction to nicotine has proved too strong.

While pregnant, she cut back from a pack or more every day to one or two packs a week. But she can’t stop. And the continuing pressure of Claire’s illness and the sudden responsibilities of motherhood have reinforced her need for something that helps her deal with the stress.

“[The child] was just so fussy, and I was tired, and she just stressed her mama out,” Christine said.

It pains Claire, but she understands. Hers has been a smoking family. Her husband, Joe, smokes, as does Christine’s fiance.

“You would think after seeing what I’ve gone through, they all would want to quit,” she said. “But I didn’t like anybody ever nagging me. I had to do it on my own, the hard way, the very hard way, by getting sick. I don’t wish this on anybody. I always knew it was bad, but I was hooked. I’d try to quit, but in a day or two, I’d go back to it again.”

Claire has long since stopped. It hurts her to smoke. Also, she fears it would worsen her condition and shorten whatever time she has left.

Nevertheless, a few weeks ago, “I felt the urge again to smoke,” she said. “I thought to myself: ‘You fool--are you crazy?’ I was sitting there, watching TV, and all of a sudden I wanted a cigarette. It just shows you how deep it runs.”

Long-Awaited Union

Paige Elizabeth Greene, 7 pounds, 8 1/2 ounces, 21 1/2 inches long, born Oct. 21 at 10:38 p.m., was supposed to be a boy. At least, that’s what the sonograms showed. Clearly, they were wrong.

“And I’m glad they were,” said Christine, who had been longing for a girl and jokes that she has no baby clothes in pink.

Brady Greene, the baby’s father, was happy too. He wanted what Christine wanted. The two plan to marry in January.

The couple, who lived with Claire and Joe until about a month ago, moved after finding an affordable apartment in Newburg, Md., near the Virginia state line. Claire and Joe live in Bowie, about an hour away.

On this afternoon, two days after the baby’s birth, Claire is waiting for mother and daughter to be discharged from the hospital. The hospital is only 25 minutes away, but Claire isn’t strong enough yet to make the trip. Thus, Brady, Christine and Paige are coming to her. Everyone who has seen the baby says she’s adorable.

“I can’t wait,” Claire says as the hours drag on. “I can’t wait to get my hands on that baby. What’s taking them so long?”

The television set runs in the background. It has been going all day, as it does on most days. Claire, still in her bathrobe, sits in a recliner, trying to make the time go quickly. She leaves the house only to see her doctors, although once, recently, her sister took her out briefly to shop for baby clothes.

But she walks around now, unassisted, and clearly has more energy than she has had for some months. “I really feel great,” she says.

She is not in remission; the cancer probably will return, although no one knows when. For now, barring the unexpected, her visits to her oncologist will drop to one a month--perhaps fewer if she continues to do well.

“I’m just going to live one day at a time to the fullest,” she said. “And prove everybody wrong.”

She already has outlived earlier predictions. Last winter, hospitalized during a breathing crisis, one of the doctors who treated her--not one of her regular physicians--told family members that she probably would be dead in six months.

“I’d like to go back and see that jerk today and tell him, ‘Hey, remember me? Guess who’s still around.’ ” Claire said.

On this day, she cannot concentrate on TV. Every few minutes, she dials Christine’s hospital room, trying to find out when she will arrive. Christine is still waiting for the doctor’s OK to leave.

“I’m gonna grab that baby right out of her arms as soon as she walks in,” Claire says. “I’m tired of waiting. I want my hands on this baby so bad--it’s bad enough I had to wait nine months. I want to see her; I want to hold her. I’ve waited long enough.”

Finally, at 4:17 p.m., Claire hears a key in the lock and the door opening. She rises instantly.

“Sit down, Mom, I’ll give her to you,” Christine says, as Brady rushes over to kiss her on the cheek.

“What’s taking you so long?” Claire says.

“Go to Grandma,” Christine says, as she hands her mother the baby.

Paige is half-awake and starting to squirm. Claire is momentarily speechless.

“God, she’s so pretty,” she says, finally. “Christine, she’s great.”

“What is it?” she says softly to the baby as she begins to gurgle. “You’re not going to cry, are you?”

Claire runs a finger across the silky hair. “Look at all this hair,” she says. “And look at these long fingers. She has your mouth, Christine.”

She lays Paige down in her lap, between her legs, bends over the tiny face and smiles.

“C’mon, sweetie, open up your eyes and look at me,” she says. “It’s your grandma.”