Reporting by Jacquie Cosgrove
Being given a lung cancer diagnosis is terrifying, but Heather Von St. James and her family found a way to find humor in the situation. Von St. James had her left lung removed as part of her treatment, and her family declared it “Lungleavin’ Day”— a holiday they still celebrate each year.
“The day you lose your lung could really be a tragic day,” she tells Yahoo Life. “You could be really sad and depressed about it, but we decided to turn it around and turn it into a huge celebration. They took out my lung, but I got my life back.”
Von St. James’ cancer diagnosis came soon after she welcomed her daughter.
Von St. James was diagnosed with malignant pleural mesothelioma, a cancer of the lining of the lungs, not long after her daughter was born in 2005. She only gained five pounds during her pregnancy and noticed she lost weight “really quick” afterward. “I was so tired,” she says.
But she chalked it up to just being a new mother. “I was exhausted, but I was a new mom — I was up at night feeding her,” says Von St. James. However, she had a scary moment while doing household chores. “I went to my basement to get laundry and, halfway up the stairs, I could barely breathe,” she explains. Then, I went and sat on the couch and I passed out.”
Von St. James says she called her doctor “right away,” who did an X-ray of her lungs. Then, she was given her diagnosis. She was told that she had just 15 months to live if she didn’t receive treatment.
Mesothelioma is often caused by exposure to asbestos, a heat-resistant mineral that has been used in a variety of construction materials for insulation, according to the American Cancer Society (ACS). When someone breathes in asbestos fibers, those fibers travel to the ends of small air passages and reach the pleura (the lining of the lungs), where they can cause inflammation and scarring, the ACS reports. This can damage cell DNA and cause changes that lead to uncontrolled cell growth and cancer.
It’s this coat covered in asbestos that led to my mesothelioma 30 years later. Heather Von St. James
“I remembered I would wear his jacket and his jacket was covered in this grayish, whitish dust,” says Von St. James. “I would wear it when I had to go feed my rabbits, or rake the leaves or something because it was already dirty and it was my dad’s coat. It’s this coat covered in asbestos that led to my mesothelioma 30 years later.”
“If I didn’t do anything, I was only going to live 15 months.”
Von St. James was given a tough decision. “If I didn’t do anything, I was only going to live 15 months, which I was not going to take as an answer,” she says. Her other option: To have a groundbreaking surgery— “one of the most invasive surgeries there is,” she says. It involved removing her entire left lung, the lining of her heart, the left half of her diaphragm and one of her ribs. She decided to have the surgery.
You have to adjust your entire way of life after a cancer diagnosis. Heather Von St. James
“The recovery was brutal because I had to follow up surgery with chemotherapy and radiation,” Von St. James says. She also had to learn to breathe with just one lung. “Having one lung, your breathing capacity is literally cut in half,” she explains. “People often ask me how long before everything is back to normal and I’m like, ‘Never.’ You have to adjust your entire way of life after a cancer diagnosis.”
After recovery, Von St. James found new motivation.
Von St. James became an advocate for mesothelioma research and she’s currently the co-chair of the community advisory board for the Mesothelioma Applied Research Foundation. Every year, she hosts a Lungleavin’ Day party to raise money for the foundation. “To date, we've raised over $40,000,” she says.
The median survival rate for people with pleural mesothelioma is 18 months, “so to make it even five years is a big deal,” Von St. James says. It’s been 14 years since her diagnosis, which is “kind of unheard of.” That’s why she says “it’s so important that I talk about it to bring awareness to the disease and offer hope to people who are newly diagnosed.”
Von St. James got a lighthouse tattoo on her right arm as a result of her advocacy work and incredible survival. She says her father considered her a “beacon of hope” for people, and he referenced that when he was diagnosed with kidney cancer — a diagnosis the family thinks was linked to his asbestos exposure. “Even when he got sick, he told me, ‘You’re going to continue to be that lighthouse, aren’t ya?’” Von St. James says. “It’s a promise to my dad and a promise to myself to go forward and help people.”