How a coat covered in asbestos led to one woman's cancer diagnosis 30 years later
Heather 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. “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. Von St. James says her doctor asked if her dad ever worked in construction or mining of any sort. “I said, ‘Well, yeah. He did both,’” she recalls. “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. “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.” 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.”
Video Transcript
HEATHER VON ST. JAMES: You know, a day you lose your lung could really be a tragic day, and you could be really sad and depressed about it. But we decided to turn it around and turning it into a huge celebration, Lungleavin' Day, which is the day my lung left. They took out my lung, but I got my life back.
My little girl was born on August 4, 2005. But I only gained five pounds through the whole pregnancy. I was so tired. I was exhausted. But I was a new mom, and I was up at night feeding her. And then I was losing weight really quick. I had a really hard time breathing. I had went to my basement to get laundry. And halfway up the stairs, I could hardly breathe. And then I went and sat on the couch, and I passed out. I called my doctor right away. He had me come in and do an X-ray. You have a disease called malignant pleural mesothelioma. It's a cancer of the lining of your lung. Without any treatment, he goes, you have 15 months to live.
Mesothelioma's caused by asbestos exposure. The doctor asked me if my dad ever worked construction or mining of any sort. And I said, well, yeah, he did both. I remembered I would wear his jacket, and his jacket was covered in this grayish whitish dust. I would wear it when I had to go feed my rabbits or break the leaves or something, because it was already dirty. And it was my dad's coat. It was this coat covered in asbestos that led to my mesothelioma 30 years later.
If I didn't do anything, I would only live 15 months-- which I was not going to take as an answer-- or have this groundbreaking surgery, one of the most invasive surgeries there is, removal of my entire left lung, the lining of my heart, the left half of my diaphragm, and one of my ribs. The recovery was brutal because I had to follow up surgery with chemotherapy and radiation. Having one lung, your breathing capacity is literally cut in half. People often ask me, how long before everything's back to normal? And I'm like, never. You have to adjust your entire way of life after a cancer diagnosis.
My dad felt a lot of guilt. I said, Dad you're not at fault here. It's the asbestos companies that did this. It wasn't you. Second-hand exposure of asbestos-- we're the patient that they never wanted to admit there was. One fiber can make a person sick. They've known that it's caused cancer since the early 1900s. The asbestos companies said years ago, oh, if they make a good living by asbestos, they might as well die by it too.
The United States is one of the only industrialized country where it's still legal. The Trump administration tried to roll back protections for asbestos a few years ago. You need to make sure when you're electing officials that they're on the right side of history. It boils down to dollars over lives, and that's unconscionable in my opinion.
The median survival rate is 18 months. So to make it even five years is a big deal. 14 is kind of unheard of with pleural mesothelioma, which is why it's so important that I talk about it to bring awareness to the disease and offer hope to people who are newly diagnosed. I have my lighthouse tattoo over here. My dad told me I would be a beacon of hope. And even when he got sick, which we think was due to the asbestos, he told me, he's like, you're going to continue to be that lighthouse aren't you?
