Nearly 15 years ago, Heather Von St. James was told she had less than two years to live due to mesothelioma. It’s a rare cancer related to asbestos, a chemical Von St. James had last been exposed to nearly 30 years before.
It all started in early August of 2005. After giving birth to her daughter Lily via C-section, Von St. James, a 35-year-old hairstylist living in Minneapolis, expected new mom fatigue. But she wasn’t prepared for the bone-weary exhaustion that followed when she returned to work one month later.
“I was breathless all the time. I was pale, I felt like crap, and I was so tired. I’d never felt that tired before,” she remembers. To keep her job, Von St. James sat on a stool as she cut clients’ hair. In between appointments, she tried to catch her breath in the backroom. Then, she dragged herself back to work.
Two months later, in early November 2005, Von St. James feared something was seriously wrong with her after she passed out in the middle of getting ready for work.
“I got Lily up and out of bed, put her in her swing, and went down to our basement to get the laundry. Halfway up the stairs, I was completely out of breath—literally gasping for air,” she says. She made it to the couch. Then, she blacked out.
An hour later, she woke up to her daughter cooing. She called the salon and said there was no way she could come in. Immediately after that, she contacted her family physician’s office to schedule an appointment.
At first, Von St. James’ doctor suspected her exhaustion was due to anemia from blood loss during her C-section. He advised her to take iron supplements for a week and then come back. At her follow-up appointment, though, additional blood work suggested something else was going on. Her doctor suspected she might have a postpartum heart condition that caused the heart to enlarge, so he ordered a chest x-ray. Instead of a larger-than-usual heart, though, imaging revealed that Von St. James had a buildup of fluid in her lungs. She’d been struggling to breathe because her lungs couldn’t fully inflate.
The next day, while her husband watched their daughter at home, Von St. James went to a nearby hospital to have her lungs drained. “It was very surreal,” she remembers. “One minute you’re fine, the next you’re in a hospital getting a needle stuck in your back.”
The pulmonologist removed about a liter of fluid but was concerned about its color. Typically, the lungs contain less than four teaspoons of straw-colored liquid, but hers was the color of iced tea—an indicator that the fluid had blood in it. Sometimes, that can be a sign of a malignant tumor. So the doctor ordered a CT scan, which revealed a mass, but they’d need to do more testing and a needle biopsy to identify exactly what it was.
At this point, it was clear that Von St. James’ health issues had nothing to do with her recent pregnancy or postpartum fatigue. “My husband picked me up, I told him they found a mass, and we just kept looking at Lily, like, This isn’t what we signed up for. This is not the new parenthood we signed up for. This is supposed to be happy,” she says.
Two weeks later, on November 21, 2005, Von St. James was diagnosed with malignant pleural mesothelioma (MPM), an aggressive form of cancer.
Mesothelioma is relatively rare, accounting for less than 1% of all cancer cases, but a case like Von St. James’ is especially uncommon. Most mesothelioma patients are men, and the average age of diagnosis is 74, per the American Cancer Society. Von St. James was 35. Her pulmonologist told her he’d only ever seen one other mesothelioma patient as young as her.
As Von St. James’ doctor explained, mesothelioma is named for where it originates—in the mesothelium, a thin layer of tissue that covers most of our internal organs. Like the majority of mesothelioma cases, Von St. James’ cancer occurred in the pleura, or tissue lining the lungs.
Mesothelioma is unique in that it’s most often caused by exposure to asbestos, a type of mineral that naturally occurs in bundles of fibers. During the late 1800s, asbestos was considered a wonder material, prized for its resistance to heat, fire, and electricity. Manufacturers and builders used it in insulation, roofing shingles, ceiling and floor tiles, ships, and brake pads, among many other products. But by the early 1900s, we’d learned breathing in asbestos caused scarring in the lungs: It was too good to be true, and soon, experts would learn the ubiquitous material can lead directly to cancer.
Most mesothelioma patients are older men because they were most likely to be exposed to large amounts of asbestos on the job in industries like mining, manufacturing, construction, home repair, shipbuilding, and the military before the International Agency for Research on Cancer (IARC) classified asbestos as a carcinogen in 1977 and efforts were taken to limit on-the-job asbestos exposure. But some of them also took asbestos dust home with them on their clothes and skin—unknowingly putting their family members at risk, too.
During Von St. James’ childhood in the 1970s, her father worked in construction. “I remember when he came home from work after mixing asbestos into drywall, his jacket was covered in this grayish-white dust,” she says. “He hung it up in our entryway after work, and I would wear it when I ran outside to feed my rabbit, rake the yard, or pick up the mail. I loved wearing that jacket because it was my dad’s.” It was this seemingly innocent childhood exposure that likely led to Von St. James’ mesothelioma diagnosis thirty years later. The timeline made sense, as the disease typically emerges some 20 to 30 years after the initial asbestos exposure.
“When you inhale asbestos fiber, it goes through your airways and embeds itself inside the edge of your lung,” explains Raja M. Flores, M.D., a professor and chief of thoracic surgery who treats mesothelioma patients at Mount Sinai Hospital in New York City. “With every breath you take, that little fiber rubs up against your chest wall. It’s like a scar gone wild.” In time, this irritation can create scar tissue in the lungs known as asbestosis. Inside this scar tissue, malignant mesothelioma tumors can begin to grow.
“My dad was just going to work to provide for his family,” says Von St. James. But after learning about his daughter’s diagnosis, he struggled with guilt. When he prayed with his pastor, he told him not to worry—his daughter would be a lighthouse, a beacon of hope for others who were suffering. “My dad took a lot of comfort in that. He saw a greater purpose in my illness,” she says.
The typical prognosis for mesothelioma is about one year, and treatment options were limited for Von St. James and still are, per the Centers for Disease Control and Prevention (CDC). Von St. James was told she might have 15 months to live, but she was determined to survive for her daughter. Over the next year, she underwent a complex surgical procedure in which her entire affected lung was removed along with four sessions of chemotherapy and thirty sessions of radiation. As she navigated treatment and recovery, her parents, husband, and sister helped take care of her and her daughter.
Today, Von St. James is a mesothelioma survivor, cancer coach, and advocate for a global ban on the use of asbestos. Although life with one lung and nerve damage due to radiation presents many challenges, she’s outlived her prognosis by almost fifteen years. Her father died of kidney cancer a few years ago.
Asbestos might sound like a threat of the past, but it has yet to be fully banned in the United States and many other countries.
“There’s a misunderstanding that asbestos is banned, and therefore no longer a problem,” says Von St. James. Although the Occupational Safety and Health Administration (OSHA) issued standards to protect workers from asbestos and the Environmental Protection Agency (EPA) banned numerous asbestos-containing products in the 1970s, buildings and products built before then could still contain asbestos. What’s more? As of reporting, the U.S. continues to manufacture and import some asbestos-containing products, the vast majority of which is used in the chlorine industry, per a report published by the CDC. It’s unknown just how much asbestos is imported, though it may be found in many different products including items traditionally made with it such as building materials and brake linings and pads as well as gaskets, millboard, yarn, and thread, among others.
Many Americans assume the asbestos threat has been handled, but it’s still found in an untold number of schools, homes, and buildings across the United States. Breaks in tile, ceiling, or walls due to natural disasters, renovations, or DIY projects could allow these harmful fibers to enter the air—and wreak havoc inside the delicate tissue that lines our lungs. Today, most people are exposed to asbestos during construction, remodeling, and demolition work. And the truth is, asbestos is still imported into our country in a slew of different products and used in some manufacturing plants.
To protect yourself and your loved ones, Dr. Flores advises being vigilant for asbestos in your home. Before tackling any do-it-yourself home remodeling projects like stripping popcorn ceilings, tearing out insulation, or removing old flooring, hire specialists who can test for the presence of asbestos and properly remove it.
While mesothelioma is rare and rates of the disease declined from the 1990s to mid-2000s, case counts in the United States went up slightly as of 2015—an indicator that asbestos is still a threat, per the CDC. Every year, about 3,000 new cases are diagnosed in the U.S., and worldwide, an estimated 107,000 people die from asbestos-related diseases, according to the World Health Organization (WHO). Von St. James says she’s made many friends throughout her work—but lost them shortly afterwards. “The average life expectancy for this disease is four to eighteen months, and most people die within that time,” she says. “If I’m lucky, I get to know someone for a couple of years, we get close, and then they pass away.”
To end asbestos-related diseases, the WHO recommends that all countries stop using asbestos. In the U.S., legislation is currently in the works for a total asbestos ban, but partisan politics have stalled its progress. Lawmakers have argued over how the ban might affect some lawsuits, leading to an impasse. “We’ve known about this for how many decades?” says Dr. Flores. “It’s a no brainer—just ban it.”
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