Survivors

Kristin Johnson
Breast cancer
21 years since first diagnosis

She was just 28, living on the Blackfeet Indian Reservation in Montana, when she first felt the lump in her breast.

Told she was too young to get cancer, it was five months before she had the biopsy that confirmed it. She was pregnant with two small boys at home and had to drive three hours to Great Falls for a mastectomy. She made the heartbreaking decision to abort her baby.

For eight months she was on chemotherapy, continuing her job teaching second grade and caring for her children. Five years later the cancer was gone. She was cured.

Nine years ago, she had a bad pain in her chest that wouldn't go away. Tests showed her cancer was back and had metastasized to her lungs. She came to Seattle for tests, and her doctor told her she would live 18 months to two years. Today, Kristin Johnson has been at Stage 4 cancer, the most serious kind, for 10 years.

"At first I was scared to death, especially when they tell you there's not a cure. You go through all the stages of grief," she says.

"It was so hard. I had two kids in high school," she says of hearing the grim prognosis. Her brother had died of lymphoma; her sister had breast cancer that would later kill her; her father, now 94, also had had lymphoma.

Now 49, Johnson has been living with cancer for 21 years. She is such a survivor that she ran a half-marathon in November for Gilda's Club, a cancer-support group.

"I'm the healthiest sick person I know," Johnson says. When told she had two years to live, "I said I'm not ready. I made a deal with God: Let me get my kids through high school."

With her marriage ending, Johnson decided to move to Seattle with her youngest son. But she still returns to Glacier Park in Montana every summer to help her parents with the resort they've operated for 52 years.

She's been on countless drugs that have worked and stopped working. "There isn't a cure," says Johnson. "I'll always be in treatment." And that can be tough. "Cancer people have the right to complain," she says. "Cancer takes away so much from you. Of course I don't want to die, but I've made peace with all of that."

Her children have never known a time when she didn't have cancer, and today she does what she enjoys and doesn't put things off. "I don't sweat the small stuff."

She travels. She plans to go on a cruise with six friends, she toured Turkey, she spends time with her grandchild. She visits her sister in Alaska, who was also diagnosed with cancer. "I would not have taken the time to do this. I would have been at work, living life. But you reprioritize."

When she began going to her advanced-cancer support group through Gilda's Club in 1999 there were 12 members. Now there are three. "When you get cancer, life is never the same again. You have a headache, it becomes brain cancer; a backache becomes bone cancer."

While she knows "cancer doesn't care what kind of attitude you have," Johnson says, "a good attitude is my gift to people. There's always somebody worse off than I am."

Jerry Liebermann
Leukemia
28 years since first diagnosis

Jerry Liebermann is so attuned to his disease, the name of it rolls off his tongue: Myelogenous leukemia. Diagnosed in 1978, during his first year in medical school at Stony Brook University in New York, Liebermann was given three years to live. He'd had his wisdom teeth pulled and the bleeding wouldn't stop. When he went into a lab for tests he was told not to leave.

Liebermann's cancer has no cure.

"Imagine hearing this at age 22," he says. "I had a year when I was in horrible shape psychologically, and then I saw a good psychiatrist who said my mind had to keep working if my body didn't."

In 1981 Liebermann had a bone marrow transplant at Seattle's Fred Hutchinson Cancer Research Center using his father's bone marrow, which wasn't a perfect match. He was given a 50 percent chance of surviving the transplant and a 50 percent chance of long-term remission.

In medical school he wasn't treated differently because of his cancer, but he did get out of one class. "I couldn't dissect dead bodies when I expected to be one soon."

While he graduated from medical school, he couldn't do an internship because his immune system was so suppressed he wasn't allowed to go into hospitals.

A year after he graduated he was named alumni of the year. "I think the only reason I got it is because I was still alive."

Liebermann and his wife moved to Seattle; he got a master's degree in bio-engineering and worked for a company that made medical instruments. They started a family and bought a house on Capitol Hill.

When his daughter was 2 weeks old, Liebermann relapsed. He had a second bone-marrow transplant, again from his father. He was doing well until seven years ago when he relapsed again. An experimental treatment failed.

He went on drugs and off drugs until a scientist in Oregon discovered something to fight his disease. Now, at age 50, he is in "molecular remission."

"It was just-in-time medicine for me," says Liebermann, who takes seven drugs every day. His daughter was in third grade when he last relapsed, and he worried how it would affect her in school. "She asked, 'Will Daddy die?' I said probably not, and that was it."

Having cancer caused Liebermann to re-set priorities. He traveled across America, went to Europe with his sister.

"Having cancer makes me look at my possessions and realize they're not important. What's important is family."

He retired on disability, but volunteers at Gilda's Club as director of technology. He volunteers for the Girl Scouts and helps out at his daughter's school, too.

"I see this part of my life as giving back," Liebermann says. "I didn't expect to live past 30, and now I'm thankful for every day above it and make the best of it. When you pick a doctor, pick a cock-eyed optimist."

This sense of giving back, of redefining values, is shared by many who are battling fatal illnesses such as cancer, says Dr. John Wynn, medical director in the division of cancer psychology at the Swedish Cancer Institute.

"What comes up over and over again in a variety of contexts is a perspective about what's important," he says. "It's a different view of life that is more centered around the individual's core values and a better sense of what is worth time and what is wasting time."

Wynn says his office manager had metastatic cancer, yet continued to work until three weeks before she died. "One of the core rules of my work is there are no simple answers," he says. "There are people who want to go to work, they want to be good at that. Not everyone writes the great American novel and goes off to Sri Lanka."

Wynn talked about one of his patients severely ill with bone marrow cancer and, at one point after aggressive treatment, decided she was finished, that she wanted to die. He met with her and diagnosed severe depression and treated her. "She had four to five months with a high quality of life, and when she wanted out she was not depressed, so we withdrew treatment and let her die."

Wynn says many patients become very oriented toward their roles in their families, as a parent or son or daughter. "They wake up and say what I put off 'til later, this is later. It may be a trip, a project, a nonprofit, a second career. It may be finally saying that studio I was going to create for myself, I'm doing it now because there is no other time to do it. Now is all there is."

Pat Migliore
HIV/AIDS
24 years since diagnosis

When school children ask Pat Migliore how she contracted the AIDS virus she doesn't even flinch. She was infected in 1984 by her husband, Bob, who died in 1989.

Through his illness she stayed by his side, even though he'd given her a fatal disease. What worried her husband, she says, is that he was a blood donor and feared he unwittingly infected someone else.

Her fears, she says, "were knowing that both my husband and I had it, and one of us was going to watch the other one die."

After finding out she'd been infected, "I was shocked, pissed off and angry. Then I went into survival mode."

She didn't tell her family, confiding in only a few friends. "The 1980s were the 'afraid decade,' so I kept it a secret. I was terrified because there was so little known about HIV. I had fears about the disease and the stigma about what would happen if people found out."

At first, she says, doctors refused to treat her and her husband, and that's when she knew she had to become a health-care consumer. There were no AIDS support groups for heterosexual couples and women, and she was the only woman in an all-male support group.

Of the eight people in that 1986 group, she is the only survivor.

"I never thought I'd have this much time," says Migliore, 54, who has no children and lives in a tidy house in Burien with her dog, Lance.

She knew with the diagnosis that she was HIV positive, the clock was ticking, but "the hardest part was grieving Bob's death."

She's been hospitalized, worrying a cold would become pneumonia and bring death. She worked as an elementary-school teacher and day-care director, and is now retired on disability.

Born in New York, Migliore packed up a converted bread truck with her husband, lived on the road for five months and ended up in Seattle, "where the wagon wheel broke."

Today she takes eight different prescription drugs a day, down from the 30 she once took. "Drugs are why I'm still alive," she says.

After her husband died, Migliore decided it was time to take herself on adventures. She went to New Mexico to talk with psychiatrist Elisabeth Kübler-Ross, author of the ground-breaking "On Death and Dying." She went to Mexico, took a boat out of San Diego to see an eclipse, went to Belize and learned to scuba dive.

Migliore has no idea how long she'll live. Could she have a normal life span? "If you'd asked me this 10, 15 years ago, I'd say absolutely not. People can fight this just for so long. I'm trying to take it one day at a time and trying to live the best I can."

Every year she helps organize a "Babe's Retreat" on Marrowstone Island, where women with AIDS draw together. The members keep a tally board on how long they've had the disease, which ranges from 23 years to "I found out last month."

"How do I get through this? I have a good dog and a good partner (Kathleen). Support is important."

Sam Staatz
Brain cancer
7 years since diagnosis

When Sam Staatz, an engineer, developed migraines in 1999, he was certain it was because of the chemicals used in carpet cleaning in the building where he worked. Other co-workers had headaches, and it was an annoyance at best.

But when the fumes went away, Staatz's headaches didn't. Driving back from Tacoma, with his grandfather in the car, Staatz had a ruptured aneurysm and crashed his car into a guardrail. His grandfather, a physician, immediately recognized the symptoms.

Taken to Harborview Medical Center, he heard the disturbing diagnosis: Glioblastoma multi form. Extremely malignant with low survival rates, and Staatz was already at Stage 4. It was a death sentence.

"I woke up in the hospital with my mom and dad by my side, which was unusual because they'd been divorced since 1975," he recalls. He was told he had a brain tumor which, in a way, was good news because he knew what was causing his headaches, and they were gone.

A tumor the size of a tennis ball was removed from his brain. He was put on an experimental radiation program and doctors put a shunt in his head to direct chemotherapy drugs straight into his brain.

Staatz slept. A lot. And his condition worsened. On steroids, he was confined to a wheelchair and his weight shot up to 300 pounds. He couldn't read, forgot how to walk, lost all his math ability, except calculus. "The tumor was overtaking me," he says. "I couldn't remember something that happened 30 seconds ago."

"I never thought I was going to die," Staatz, 40, says today. "If I had been told, I probably would have forgotten it anyway."

Why he's still alive, seven years after his diagnosis, is no mystery. Good doctors, aggressive treatment and the will to live. "Whenever I was given a choice of treatment, I chose the most aggressive one," he says.

He took large doses of melatonin, a hormone made by a part of the brain called the pineal gland, and, today, the tumor doesn't show up on an MRI.

When he was diagnosed, Staatz, who is single, was playing soccer four days a week and biking to work 60 miles four times a week. He was laid off, then out of work for five years. Two years ago, he returned. Now he's a project engineer with ENSR, an environmental consulting company.

"I don't think I'm cured," Staatz says. "Part of me will know it will always be there." He looks forward to his MRI every three months. And he is not planning his death. He just bought a house on Beacon Hill, which he's having remodeled, and a car and a motorcycle. He's learned to read again, keeping up with the latest research for his job.

"This is not something someone who's dying would want to do," he says. As for spending his money, "what else would I spend money on? It's not good when I'm dead. I spent all this money to live, so I might as well live."

His uncle gave him two trips, to Germany in 2002 and Japan in 2004.

"I never give up. I've seen a lot of people who give up, and when they give up, they die."

Navigation is still a big problem. He can't read maps; his memory is bad.

"I'm living life. I'm taking one day at a time and enjoying every day," Staatz says. "It could be worse. I could have a brain tumor!"

Staatz is biking again, but he doesn't play soccer. "I don't like flying objects next to my head. I spent enough money on it."

Gail Stulberg
Ovarian cancer
5 years since first diagnosis

At first she blamed it on the Mexican food she and her husband had eaten on a vacation in 2002. When she went to her doctor he said it was constipation. Go home and take a laxative.

Gail Stulberg couldn't eat. The pain got worse. Finally, tests showed she had ovarian cancer, Stage 3.

For the mother of two young children, the news was devastating. She was just 38 years old, living in Issaquah and teaching accounting at Bellevue Community College. Life was very good.

Stulberg's cancer hasn't gone into remission, yet she feels lucky. "I'm approaching the five-year mark, and to still be here is amazing," she says. She endured three cycles of chemotherapy, but the cancer continued to progress. She tried taxol, which also failed, then moved through several other drugs until she found one that seems to be working.

Stulberg has also been on dialysis, after her kidneys failed last April.

"This has been really, really devastating. I've always been a Type A," she says. With her children in preschool she hired a nanny, and a big day for her was taking a shower.

The illness is hardest on her son, Stulberg says. He asks if she's going to die. "I say I might, that cancer could kill me, but we should have an idea of when it might happen and I will keep him informed. I'm not dying now," she says. Her daughter is the strong one. "They really love each other, and she helps him through when he's very, very sad. But every day I'm here with my family is a great day."

Stulberg has mellowed. She's learned to say no. Her family is her priority.

The family loves to travel, and the cancer hasn't stopped that. They've cruised to Alaska, visited the Caribbean and Hawaii, where they swam with dolphins. In years past she would have said it was too expensive, "but I don't care how expensive, we may not get the opportunity again."

If she wants new clothes or jewelry, she'll buy them. "I've changed and become a little more spontaneous, a little more selfish. I want the kids to have really good memories."

Stulberg, 42, no longer has a nanny and picks the kids up from school each day. She takes them to karate lessons. "We try to have a normal house as best we can, even with the stupor of death hanging over us. In some ways we're fortunate, we need a disease to help us understand what's important in the world."

She recalls her favorite quote from the movie "Shawshank Redemption." You get busy living or get busy dying. "I'd rather get busy living. My mortality is staring me in the face, but look at 9/11, look at the poor guy where a crane fell into his apartment. If there's a lesson to be had, we all have to live our lives to the fullest and do all those things we want to do. That's how I've been living for the last five years.

"I'm willing to say I will die, and I will die prematurely. My family doesn't like to hear it, but it's the truth. I can't keep cancer at bay forever."

Stulberg is "scared every day" about dying and not being there to watch her children grow up. "At the beginning I worried about the milestones I'd miss: high-school graduation, weddings, grandchildren. I still think about those things, but my daughter's bat mitzvah has been scheduled. Part of me says, 'What if I make hers but not my son's?' Fear is part of my life every day."

When she and her husband go to funerals, she says, they talk about what hers should be like. "It's kind of sick and morbid, but we have to find humor even in the dying."

Susan Gilmore is a Seattle Times staff reporter. Mike Siegel is a Times staff photographer.