Where do the Children Play?

The next wave of asbestos victims

by Paul Peters

St. Louis resident Julie Gundlach’s life changed forever in August of 2006, when she was diagnosed with mesothelioma cancer at just 35 years old.
Her diagnosis with this deadly disease is unusual, but may be part of a growing trend.
Mesothelioma normally strikes older men who were heavily exposed to asbestos in occupational settings-at plants where it was processed, in mines, or in professions that brought them into contact with insulation and other building materials in which asbestos was heavily used.
This may have been the case with Gundlach’s father, who died in 2005, at the age of 63, from lung cancer. Gregg Gundlach had worked for 30 years as a commercial electrician, coming into contact with insulation and fireproofing materials on a frequent basis. Asbestos was routinely used in these types of materials until the mid-1980s.
The lungs are one of the primary places mesothelioma attacks, and from there it spreads very quickly. People diagnosed with mesothelioma in their lungs, which is known as pleural mesothelioma, generally live for just weeks or months.
Gregg Gundlach died only six weeks after diagnosis.
At that time, Julie Gundlach says her family was not aware of asbestos or the diseases it can cause, and so they never had any tests done to determine whether it was the culprit in his death. Gregg Gundlach’s body was cremated, without a biopsy or an autopsy ever having been performed.
Then, two years later, Julie Gundlach became ill. She discovered the link between mesothelioma and asbestos then, and now thinks her father’s death and her sickness may have been connected.
When she was a child, Gundlach says her play area was also the laundry room, where her dad’s possibly asbestos-laden clothes were washed and dried. She believes that to be the source of her exposure, although it’s impossible to know for sure.

A Rare Diagnosis

Gundlach laughs telling the story about how she first discovered she had mesothelioma.
“I was constipated,” she says bluntly. “I tried a bunch of herbal stuff, ate prunes, drank prune juice, and nothing was making it any better, so within a week I went to the doctor.”
Her doctor ordered a CT scan for Gundlach, which revealed an unusual tissue mass inside her pelvis, and fluid in one of her lungs.

At first they suspected ovarian cancer, a common misdiagnosis for female mesothelioma patients. It wasn’t until after they operated that her doctors realized it was something else, and even then, Gundlach says, they had to refer to medical reference books to finally determine she had peritoneal mesothelioma.
But one can hardly blame her doctors for being confused. For one, peritoneal mesothelioma is a fairly rare form of cancer, striking only about 100 to 500 people in the United States per year.
Secondly, mesothelioma almost always effects people in their 60s.
But some have begun to notice a dip in the age of people mesothelioma is effecting.
Mary Hesdorffer, a nurse practitioner and the Medical Liaison for the Mesothelioma Applied Research Foundation (MARF), says, “We are finding younger and younger people with mesothelioma.”
She says that as of yet there are no available statistics to show how many people in their 30s or younger have been diagnosed with mesothelioma, but she tells the stories of people she has come into contact with.
She talks about one man who was diagnosed at 27-years-old, “His exposure was actually traced back to his grandfather, who had a home lab and was working on asbestos slurries.”
Another woman, she says, had a playpen near the laundry area in her grandparent’s home. Her grandfather worked with asbestos, “and when the grandfather would come home from work, the grandmother would shake the dust out before putting them in the washer.”
And then there’s Zaida Mattson, a Boulder, Colo. girl who was diagnosed at age 3 with peritoneal mesothelioma. Hesdorffer says doctors are at a loss to explain that case, considering mesothelioma is supposed to have a latency period of at least 20 years.
Dr. Brad Black, director of the Center for Asbestos Related Disease (CARD) in Libby, Montana, says he’s also noticed that the average age of mesothelioma patients has dipped. Although he has not seen any patients as young as Gundlach, he says the average age of patients has dropped from 60 to 50 at CARD.
There are a number of potential causes for younger people being diagnosed.
Hesdorffer believes part of it could be that people are starting to get better information, because of advances in technology. She believes it is possible that in the past people may have been diagnosed with other forms of cancer by doctors who were unaware of mesothelioma.
Another more alarming line of thinking is that the last wave of people with asbestos-related disease were older when they first came into contact with it. Specifically, they were at working age. Asbestos-related disease usually takes anywhere from 20 to 40 years after exposure to manifest, so it’s not surprising these workers, starting jobs in their twenties and thirties, wouldn’t see disease until their sixties.
But the asbestos products they made were used extensively across the country.
Materials like Zonolite were put into attics and lawn care products, chemicals like Monokote were sprayed onto buildings, other asbestos products were used in drywall and as pipe lining. There are also numerous sites around the country where asbestos was processed and products were manufactured.
And there are places, such as El Dorado, Calif., where tremolite asbestos is naturally occurring, and has even been found next to a high school.
Hesdorffer points to one possibility for future exposures to asbestos.
“The trend in the U.S. now is home remodeling,” she says. “People are just breaking into walls and taking down ceilings in older homes with no protection, and no realization of the risks that are posed, and I have a feeling that from this we are going to see a big onset of new cases of mesotheliomas.”
People of all ages are now being exposed, and recent studies, such as one which Dr. Black helped author, are showing that even short-term exposures to asbestos can cause mesothelioma.
“Once asbestos is banned,” says Hesdorffer, “we will still see mesotheliomas, because asbestos is still in our environment.”

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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