Where do the Children Play?

Life with mesothelioma

When the doctors finally diagnosed Gundlach, she felt like she had been given a death sentence. The average peritoneal mesothelioma patient lives between two and five years after diagnosis.
“They said, ‘Go home, make sure you have a will,’” Gundlach says.
Gundlach is married, to Dan Young, and their daughter, Madeline, was only three years old at the time. She says her mother and husband were devastated by the news.
As of now, Madeline has a child’s understanding of what her mother is going through.
“We try to keep her world as normal as we can,” Gundlach says. “She knows I have cancer, but I don’t think a kid has the understanding that we do of what that means. She knows I’ve ‘got bad stuff in my belly.’”
“My husband, I don’t know how he does it,” she says. “He spent three weeks in November sitting in a hospital wondering if I’m going to pull through surgery, while my daughter stays home with her grandma, wondering why mommy didn’t call at night.”
Her daughter, she says, has gotten used to her frequent trips to New York, where she goes to New York Presbyterian Hospital for treatment.
“To her it’s like having a parent who travels for business.”
Right now, Gundlach says that her own biggest fear is that she will not live to see Madeline grow up.
But she does have hope.
Six weeks after her diagnosis, she went to the annual MARF symposium, which was held in nearby Chicago that year. In a lot of ways, she says, MARF has saved her life.
For one, she met Dr. Robert Taub of the New York Presbyterian Hospital at that first symposium.
Taub, a mesothelioma specialist, agreed to take her on as a patient.
But life has not been easy since she began treatment.
“There’s no comparison from my life now to my life before mesothelioma,” Gundlach says. “It completely and utterly changes your life.”
“I’ve flown to New York City, I think 27 times in the last three years. I’ve had four surgeries total, three of them in New York City, 20 rounds or so chemotherapy,” she says.
“They gave me a full hysterectomy on my first surgery,” she continues, “I went into rapid onset early menopause. I’m not able to work. My last surgery in November, I was in New York, and I almost died. They had to work on my liver, and my liver split on them. I had 24 units of blood on the table. They had to induce me in a coma for three days.”
Even after all that, her PET scans showed signs of abnormality during her last visit to Dr. Taub in May.

Getting Active
Gundlach admits it may sound a bit corny, but she says since her diagnosis, she’s been trying to live by Tim Robbin’s famous line in Shawshank Redemption, “Get busy living, or get busy dying.”
The first Earth Day after Gundlach had been diagnosed, she set up an asbestos awareness booth at the St. Louis Earth Day celebration, which is the third largest in the country. This April marked her third Earth Day. At her booth, she informs people of the many products that contain asbestos, and the fact that the use of asbestos in products is still not banned in the U.S.
“What I’ve found doing the booth is that most people think it’s banned,” she says. “And they have no idea of how widespread the use of it actually was. When I tell people it’s not banned… they’re shocked.”
This year she gathered 1,000 signatures on a petition asking Congress to ban the use of asbestos in the United States at the Earth Day celebration. She plans on taking the petition to one of her congressional representatives at the end of June when she goes to Washington, D.C. for the annual MARF symposium.
This year, she says, MARF is working to set up meetings between victims like her and their congressional representatives.
But Gundlach says she wants to contribute to more than just asbestos awareness.
“In addition to being a voice for asbestos awareness,” she says. “I also want to be a voice for hope.”
And she definitely seems to be a sign that, despite the dire diagnosis mesothelioma usually is, there is some hope.
Gundlach is doing remarkably well. In fact, she says she’s in the best shape of her life right now.
“I refuse to accept that this is going to take me without a fight,” she says. “I work out with a personal trainer twice a week, I’ve gone vegetarian, I do whatever I can for my health.”
“If I didn’t know that I had cancer, I would tell you that I’m in better shape than I’ve ever been in in my life,” she adds. “I could go out with my bike right now and ride 15 miles.”
She says there are a few cases of people who had been diagnosed with peritoneal mesothelioma, and have had clear PET scans for up to five years.
Gundlach gets her next scan in September, and although she’s hopeful it will be clear, she tries not to think about it too much.
“When I go back in September, [Dr. Taub] could say, ‘Come back in three months,’ he could say, ‘Come back in six months,’ or he could say ‘I want to start chemo next week.’ I have to go in knowing that any of those things are possible.”
Not knowing, she says, is hard on her.
“The three weeks before I go I’m a complete and utter neurotic basketcase,” she says. “I really try not to go thinking I’m going to have clean scans, because every time I do I leave and I’m heartbroken. And heartbroken is a hard place to live.”
In the meantime, she says, “All I can try to do is make it as purposeful as I can.”

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