Nearly 15 years ago, Heather Von St. James said she has less than two years to live due to mesothelioma. It is a rare cancer associated with asbestos, a chemical Von St. James was last exposed almost 30 years earlier.
It all started in August 2005. After giving birth to her daughter Lily via C-section, Von St. James, a 35-year-old hairstylist living in Minneapolis, expects the fatigue of the new mother. But she was not prepared for the fatigue this followed when she returned to work a month later.
“I was breathless all the time. I was pale, I felt like shit, and I was so tired. I have never felt so tired, ”she recalls. To keep her job, Von St. James sat on a stool while cutting clients’ hair. Between appointments, she tried to catch her breath in the back room. Then she dragged herself back to work.
Two months later, in early November 2005, Von St. James feared that something was seriously wrong with her after she died amid preparations for work.
‘I got Lily up and got out of bed, put her in her swing and went down to our basement to fetch the laundry. Halfway up the stairs I was completely out of breath – literally to my air, ”she says. She came to the bank. Then she darkened.
An hour later she woke up when her daughter was cooing. She called the salon and said there was no way to get in. Immediately afterwards, she contacted her GP’s office to make an appointment.
Initially, the doctor from Von St. James suspects her exhaustion was due to anemia due to 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, however, extra blood work indicated that something else was going on. Her doctor suspected that she may have a postpartum heart condition that caused the heart to enlarge, so he ordered an x-ray of her chest. Instead of a larger heart than usual, imaging revealed that Von St. James’n fluid builds up in her lungs. She struggled to breathe because her lungs did not fully swell.
The next day, while her husband was watching their daughter at home, Von St. James to a nearby hospital to have her lungs tapped. “It was very surreal,” she recalls. “One moment you’re fine, the next time you’re in a hospital sticking a needle in your back.”
The pulmonologist removed about a gallon of fluid, but was concerned about its color. Usually the lungs contain less than four teaspoons of straw-colored liquid, but hair was the color of iced tea – an indication that the liquid had blood in it. Sometimes it can be a sign of a malignant tumor. So the doctor ordered a CT scan that revealed a mass, but they would have to test more and do a needle biopsy to identify exactly what it was.
At this point, it was clear that the health issues of Von St. James has nothing to do with her recent pregnancy or postpartum fatigue. ‘My husband picked me up, I told him they had found a mist, and we just kept looking at Lily, like, This is not what we signed up for. This is not the new parenting we signed up for. It’s 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, and it is responsible less than 1% of all cancer cases, but a case like Von St. James is especially unusual. Most patients with mesothelioma are men, and the average age of diagnosis is 74 per person American Cancer Society. Von St. James was 35. Her pulmonologist told her he had only seen one other mesothelioma patient as young as she.
As the doctor of Von St. James explained, mesothelioma is named after where it comes from – in the mesothelium, a thin layer of tissue that covers most of our internal organs. Like most cases of mesothelioma, Von St. James’ cancer occurred in the pleura, or tissue that was in the lungs.
Mesothelioma is unique because it is mostly caused by exposure to asbestos, a type of mineral found naturally in bundles of fibers. During the late 1800s, asbestos was considered a wonderful material, appreciating its resistance to heat, fire and electricity. Manufacturers and builders have used it in insulation, roofing felt, ceiling and floor tiles, ships and brake pads, among others. But by the early 1900s, we had learned to inhale asbestos that had caused lesions in the lungs: it was too good to be true, and soon experts would find that the ubiquitous material could lead directly to cancer.
Most patients with mesothelioma are older men because they have probably been exposed to large amounts of asbestos in industry such as 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 made to limit exposure to asbestos at work. But some of them also took asbestos dust with them on their clothes and skin – and also unknowingly endangered their family members.
During the childhood of Von St. James in the 1970s her father worked in construction. “I remember when he came home from work after mixing asbestos in plaster mixture, his jacket was covered with this gray-white fabric,” she says. ‘He hung it up in our entrance hall after work and I would wear it if I ran outside to feed my rabbit, rake the garden or pick up the mail. I liked wearing that jacket because it was my dad’s. It was this seemingly innocent exposure to childhood that probably led to the mesothelioma diagnosis of Von St. thirty years later. James led. The timeline was meaningful, as the disease usually occurs 20 to 30 years after the initial exposure to asbestos.
“When you inhale asbestos fiber, it goes through your airways and lays it in the edge of your lung,” explains Raja M. Flores, Managing Director, a professor and head of thoracic surgery treating mesothelioma patients at Mount Sinai Hospital in New York City. With each breath, that fiber rubs against your chest wall. It’s like a scar that has gone wild. ‘Over time, this irritation can cause scar tissue in the lungs, known as asbestosis. Within this scar tissue, malignant mesothelioma tumors may begin to grow.
“My dad is just going to work to take care of his family,” says Von St. James. But after learning of his daughter’s diagnosis, he struggled with feelings of guilt. When he prays with his pastor, he says he should not worry – his daughter will be a lighthouse, a beacon of hope for others who are suffering. “My father found a lot of comfort in that. He saw a bigger 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 is still according to the Centers for Disease Control and Prevention (CDC). Von St. James was told she may have 15 months to live, but she was determined to survive for her daughter. The following year, she underwent a complicated surgical procedure in which her entire affected lung was removed, along with chemotherapy and thirty radiation sessions. While she went to treatment and recovery, her parents, husband and sister helped look after her and her daughter.
Von St. James is today a surviving mesothelioma, cancer trainer, and advocates for a global ban on the use of asbestos. Although living with one lung and nerve damage due to radiation presents many challenges, she has survived her prognosis for nearly fifteen years. Her father died of kidney cancer a few years ago.
Asbestos may sound like a threat to the past, but it has yet to be banned in the United States and many other countries.
“There is a misconception 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 many asbestos-containing products in the 1970s, buildings and products previously built could still still contains asbestos. What’s more? With the report, the US continues to manufacture and import products containing asbestos, the vast majority of which are used in the chlorine industry, according to a report published by the CDC. It is unknown how much asbestos is imported, although it is found in many different products, including articles traditionally made with it, such as building materials, brake linings and blocks, as well as gaskets, plaster and yarn.
Many Americans believe the threat of asbestos has been addressed, but it is still found in countless schools, homes, and buildings in the United States. By breaking in tiles, ceilings or walls due to natural disasters, renovations or DIY projects, these harmful fibers can penetrate the air – and wreak havoc in the fine tissue that feeds our lungs. Today, most people are exposed to asbestos during construction, cultivation and demolition. And the truth is that asbestos is still being imported into our country in a series of different products and used in some manufacturing plants.
Dr. Flores recommends being vigilant for asbestos in your home to protect you and your loved ones. Before embarking on any self-employment projects for homework, such as the ceiling of ceilings, the cracking of insulation or the removal of old floors, you should employ specialists who can test for the presence of asbestos and remove it properly.
While mesothelioma is rare and disease rates have declined from the 1990s to the mid-2000s, the number of cases has increased in the United States. on slightly from 2015 – an indication that asbestos is still a threat CDC. Every year, about 3,000 new cases is diagnosed in the US, and worldwide an estimated 107,000 people die from asbestos-related diseases, according to the World Health Organization (WHO). Von St. James says that she made many friends during her work – but lost 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 few years, we get close and then they die.”
To end asbestos-related diseases, the WHO recommends that all countries stop using asbestos. In the US, legislation is currently working for a total ban on asbestos, but partisan politics has hampered its progress. Lawmakers have been arguing over how the ban could affect some lawsuits, leading to a deadlock. “We already know how many decades of this?” says Dr. Flores. “It doesn’t have to matter – just forbid it.”
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