Almost 15 years ago, Heather Von St. James was informed that she was less than two years old due to mesothelioma. It is a rare cancer related to asbestos, a chemical that Von St. James had last been exposed to almost 30 years ago.
It all started in early August 2005. After giving birth to her daughter Lily through a caesarean section, Von St. James, a 35-year-old hairdresser who lives in Minneapolis, expected the new mother to be tired. But she was not prepared for the tiredness to the bones This happened when she returned to work a month later.
“I was out of breath the whole time. I was pale, I felt like crap and I was so tired. I’ve never felt so tired before, ”she recalls. To keep his job, Von St. James sat on a stool while cutting his clients’ hair. Between consultations, she tried to catch her breath in the back room. Then, she crawled back to work.
Two months later, in early November 2005, Von St. James feared that something was seriously wrong with her after he passed out in the middle of getting ready for work.
“I lifted Lily out of bed, put her on the swing and went down to our basement to get the clothes. In the middle of the stairs, I was completely out of breath – literally out of breath, ”she says. She went to the couch. Then she passed out.
An hour later, she woke up with her daughter cooing. She called the salon and said there was no way in. Immediately after that, she contacted the family doctor to schedule an appointment.
At first, Von St. James’s doctor suspected that his tiredness was due to anemia caused by blood loss during cesarean section. He advised her to take iron supplements for a week and then come back. At his follow-up visit, however, additional blood tests suggested that something else was going on. Her doctor suspected she might have a postpartum heart condition that made her heart grow larger, so he ordered a chest X-ray. Instead of a bigger-than-normal heart, however, the image revealed that Von St. James had a buildup of fluid in your lungs. She was struggling to breathe because her lungs could not fully inflate.
The next day, while her husband was watching his daughter at home, Von St. James went to a nearby hospital to drain his lungs. “It was very surreal,” she recalls. “One minute you’re fine, the next you’re in a hospital with a needle stuck in your back.”
The pulmonologist withdrew about a liter of liquid, but was concerned about the color. Normally, her lungs contain less than four teaspoons of straw-colored liquid, but hers was the color of iced tea – an indicator that the liquid contained blood. This can sometimes be a sign of malignant tumor. Then the doctor ordered a CT scan, which revealed a mass, but they would need to do more tests and a needle biopsy to identify exactly what it was.
At this point, it was clear that Von St. James’ health problems had nothing to do with his recent pregnancy or postpartum fatigue. “My husband caught me, I told him that they found a mass, and we were looking at Lily, like, That’s not what we signed up for. This is not the new paternity for which we subscribe. That should 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, being responsible for less than 1% of all cancer cases, but a case like that of Von St. James is especially unusual. Most patients with mesothelioma are men, and the average age at diagnosis is 74 years, according to American Cancer Society. Von St. James was 35 years old. Her pulmonologist said he had only seen another mesothelioma patient as young as she was.
As Von St. James’s doctor explained, mesothelioma is so called where it originates – 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 lines the lungs.
Mesothelioma is the only one that is most often caused by exposure to asbestos, a type of mineral that occurs naturally in bundles of fibers. During the late 19th century, asbestos was considered a wonderful material, valued for its resistance to heat, fire and electricity. Manufacturers and builders used insulation, tiles, roof and floor tiles, ships and brake pads, among many other products. But in the early 1900s, we learned that breathing in asbestos caused scars in the lungs: it was too good to be true, and soon, experts would discover that the ubiquitous material can lead directly to cancer.
Most mesothelioma patients are older men because they were more likely to be exposed to large amounts of asbestos at work in industries such as mining, manufacturing, construction, home repairs, shipbuilding and military before the International Agency for Research on Cancer ( IARC) classified asbestos as a carcinogen in 1977 and efforts have been made to limit exposure to asbestos in the workplace. But some of them also took home asbestos dust on their clothes and skin – unknowingly, putting their family members at risk as well.
During the childhood of Von St. James in the 1970s, his father worked on the construction. “I remember when he came home from work after mixing asbestos on the plaster wall, his jacket was covered with gray-white dust,” she says. “He hung it at our entrance after work, and I would use it when I ran outside to feed my rabbit, sweep the yard or pick up the mail. I loved wearing that jacket because it belonged to my father. It was this seemingly innocent exposure in childhood that probably led to Von St. James’s diagnosis of mesothelioma thirty years later. The schedule made sense, as the disease usually arises about 20 to 30 years after the initial exposure to asbestos.
“When you inhale asbestos fiber, it crosses your airways and inserts itself at the edge of the lung”, explains Raja M. Flores, MD, professor and chief of thoracic surgery who treats patients with mesothelioma at Mount Sinai Hospital in New York City. “With every breath you take, that little fiber rubs against your chest wall. It’s like a scar that has gone wild. ”Over time, this irritation can create scar tissue in the lungs, known as asbestosis. Within this scar tissue, malignant mesothelioma tumors may begin to grow.
“My dad was going to work to support his family,” says Von St. James. But after learning about his daughter’s diagnosis, he fought the guilt. When he prayed with the pastor, I told him not to worry – his daughter would be a beacon, a beacon of hope for others who were suffering. “My father was very comfortable with that. He saw a greater purpose in my illness, ”she says.
The typical prognosis for mesothelioma is about a year, and treatment options were limited for Von St. James and still are, according to Centers for Disease Control and Prevention (CDC). Von St. James was told she would have 15 months to live, but she was determined to survive for her daughter. The following year, she underwent a complex surgical procedure in which the entire affected lung was removed along with four sessions of chemotherapy and thirty sessions of radiation. While she sailed for treatment and recovery, her parents, husband and sister helped to care for her and her daughter.
Today, Von St. James is a mesothelioma survivor, cancer coach and advocate for the global ban on the use of asbestos. Although life with a lung and nerve damage from radiation presents many challenges, she has survived her prognosis for almost fifteen years. Your father died of kidney cancer a few years ago.
Asbestos may sound like a threat from the past, but it has not yet been completely banned in the United States and many other countries.
“There is a misunderstanding that asbestos is banned and therefore is no longer an issue,” says Von St. James. Although the Occupational Health and Safety Administration (OSHA) issued regulations to protect asbestos workers and the Environmental Protection Agency (EPA) banned several asbestos-containing products in the 1970s, buildings and products constructed before that could still contain asbestos . What else? According to the report, the US continues to manufacture and import some asbestos-containing products, the vast majority of which are used in the chlorine industry, for a report published by the CDC. It is not known how much asbestos is imported, although it can be found in many different products, including items traditionally made with it, such as construction materials and brake linings and pads, as well as gaskets, cardboard, wire and thread, among others.
Many Americans assume that the asbestos threat has been addressed, but it is still found in countless schools, homes and buildings in the United States. Breaks in tiles, ceilings or walls due to natural disasters, renovations or DIY projects can allow these harmful fibers to enter the air – and wreak havoc on the delicate tissue that lines our lungs. Today, most people are exposed to asbestos during construction, renovation and demolition work. And the truth is that asbestos is still imported into our country in a large number of different products and used in some factories.
To protect you and your loved ones, Dr. Flores advises you to be vigilant about asbestos in your home. Before dealing with any do-it-yourself renovation projects, such as removing popcorn ceilings, tearing off insulation or removing old floors, hire experts who can test for asbestos and remove it properly.
Although mesothelioma is rare and disease rates have declined from the 1990s to the mid-2000s, the case count in the United States has been above slightly from 2015 – an indicator that asbestos is still a threat, according to the CDC. Every year, about 3,000 new cases are diagnosed in the United States and around 107,000 people worldwide die of asbestos-related diseases, according to the World Health Organization (WHO). Von St. James says he made many friends over the course of his work – but lost them soon after. “The average life expectancy for this disease is four to eighteen months, and most people die in that period,” she says. “If I’m lucky, I can meet someone for a few years, we get close and they die.”
To end asbestos-related diseases, WHO recommends that all countries stop using it. In the United States, legislation is in progress for a complete ban on asbestos, but party policy has stalled its progress. Lawmakers discussed how the ban can affect some lawsuits, leading to an impasse. “How many decades have we known this?” says Dr. Flores. “It’s a no-brainer – just forbid it.”
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