At 36, Heather Von St James was a new mom and co-owner of a thriving hair salon in her native Minnesota.
She took care of her baby, fed her pet rabbits and always wore her father’s old work coat – a blue bomber permanently faded with dust from construction sites that she had donned since she was a kid.
‘It smelled like him,’ she said, ‘and I just loved wearing it.’ She never imagined that something that brought her so much comfort could be the source of a life-threatening illness.
After giving birth in November 2005, Von St James noticed new symptoms in addition to the fatigue she had been experiencing. She lost weight, experienced persistent fevers and felt breathless even when stationary.
She brushed these off as typical postpartum symptoms until a family member remarked on her dramatic weight loss – about five pounds per week. She went to her doctor for a check-up that December.
‘After a few weeks, I knew that something was wrong. I sent my sister a picture my husband took of me and my baby, sleeping curled up on the couch,’ Von St James said.
‘She took one look and called me in a panic. She said I looked dead in the photo and to call my doctor right away.’
Her doctor ordered a CT scan, which revealed a tumor within the thin layer of tissue that lines the lungs and the inside of the chest wall. She was diagnosed with malignant pleural mesothelioma.
After giving birth, Heather Von St James lost weight, ran fevers and felt breathless at rest. She blamed postpartum recovery. Then she sent her sister a photo of herself and got a terrifying reply: ‘She said I looked dead and to call my doctor right away’
‘I didn’t know what mesothelioma was, I’d never heard the word,’ she said. ‘The doctor said, have you or anyone in your family ever worked with asbestos? I looked at my husband, and he looked at me, and he said, ‘Oh this is bad.’
Without swift intervention – including surgery – her prognosis was that she had 15 months to live at most.
‘It was disbelief,’ Von St James said. ‘I just thought “How could this be happening?”‘
Historically, mesothelioma is a disease of older men who worked with asbestos in industrial jobs, including shipbuilding, construction, insulation and automotive brakes.
Malignant pleural mesothelioma is a rare and aggressive cancer that grows on the pleura, or the thin lining that surrounds the lungs and chest.
Unlike lung cancer, which starts in lung tissue, mesothelioma begins on the membrane lining the lungs.
It is a sinister disease in which cancer develops in the thin layer of tissue covering many internal organs, most often the lungs or the belly.
In a normal X-ray, lungs appear black because they are filled with air. The right cloudy side is the diseased lung. Mesothelioma causes the pleura (lung lining) to thicken dramatically, creating a dense, whitish mass that encases the organ
In 90 percent of cases, the only known cause is exposure to asbestos, a group of minerals once commonly used in building materials.
When asbestos fibers are inhaled or swallowed, they can get stuck in the body and, over many years, cause healthy cells to turn cancerous.
Mesothelioma spreads mainly by growing directly into nearby tissues. For example, a tumor on the lining of the lung can invade the chest wall, ribs or diaphragm.
As it advances, cancer cells can also break away and travel through the bloodstream or lymphatic system to reach other parts of the body, such as the liver, bones or brain, forming new tumors there.
The latency period is long – typically 20 to 50 years between exposure and diagnosis. A person exposed in their 20s might not develop symptoms until their 60s or 70s.
Mesothelioma deaths in women are rising, with the CDC reporting a jump from 489 deaths in 1999 to 614 in 2020, often from secondary exposure, including washing a husband’s work clothes or, in Von St James’s case, hugging her father who was covered in asbestos dust.
It remains a lethal disease. Mesothelioma patients have prognoses ranging from just six to 18 months. The five-year survival rate is only about ten percent.
Asbestos use has declined since the 1970s but never stopped entirely, with past restrictions overturned in court. It remains common in buildings constructed before the 1980s.
Von St James’s family is pictured. Her father is pictured in the back wearing the coat that was laced with asbestos fibers
In 2024, the EPA finally banned chrysotile asbestos – the only type still imported – but the rule faces legal challenges, and phase-outs for some industrial uses extend to 2037.
Von St James thought back to her childhood and remembered her dad doing construction work when she was around seven years old.
He would come home covered in a thick greyish dust from the asbestos-containing drywall mud he sanded and cleaned up.
Her dad wore his work jacket every day. So each time she breathed in her dad’s scent on the jacket, she was unknowingly breathing in toxic asbestos.
Thinking of her newborn, Von St James threw herself into treatment.
‘There was no question that I was going to die,’ she said. ‘It was like, what do I do to beat this?’
She and her husband flew to Boston to see a specialist who performed a radical surgery.
In February 2006, doctors removed her left lung, a rib, the lining of her heart and part of her diaphragm, replacing them with surgical Gore-Tex. The tumor was excised with clean margins. No visible cancer remained
‘My mind was spinning and I couldn’t breathe. I started to have a panic attack in that room while they were explaining what mesothelioma was. I began crying and had to leave the room,’ Von St James said.
‘It was the hardest day of my life. I felt incredibly alone and scared.’
In February 2006, doctors removed her left lung, the rib above it, the lining of her heart and part of her diaphragm. In their place, they used surgical Gore-Tex – the same material used in waterproof clothing – to rebuild parts of her chest.
The surgery was a success. Surgeons had excised the tumor with perfect margins, leaving no visible cancer behind.
As a precaution, to make sure they removed every bit of cancer, doctors infused warm drugs directly into her chest cavity, rocking her back and forth for an hour to circulate the medicine and kill any remaining cancer cells.
‘Patients call it the “shake and bake,”‘ Von St James said.
She endured four rounds of chemotherapy and 30 sessions of radiation.
‘People say once you survive cancer, everything should be great,’ she said. ‘But there are a lot of ongoing physical things that happen after surgeries.’
Mesothelioma deaths among women are rising, from 489 in 1999 to 614 in 2020, according to the CDC. The culprit is often secondary exposure, including from washing a husband’s dusty work clothes or hugging an asbestos-covered loved one
Twenty years later, Von St James still lives with chronic pain from the surgery, ongoing breathing problems that make climbing a single flight of stairs exceedingly difficult, and limited movement in her left hand and shoulder that makes lifting things a challenge.
While the prognosis is typically grim for mesothelioma patients, long-term survivors do exist and Von St James is one of them, now 20 years cancer-free.
Von St James’s dad died in 2014 from renal carcinoma, which she believes was related to his asbestos exposure, as asbestos fibers can travel from the lungs to the bloodstream and cause disease in other places in the body.
Now, she funnels energy into advocacy, lobbying for EPA action against asbestos, pushing for a complete ban on the use and import of the deadly mineral in the US.
‘Doctors rarely see patients live this long after mesothelioma,’ Von St James, now 57, said. ‘They say in my case, to be here 20 years is rare. I’m frankly still shocked I’m here.
‘Twenty years later and I’m still alive. Giving people that hope that it can be done, that medicine can get us there, that brings so much hope to so many.’
