Heather Von St. James was told she had 15 months to live. Today, she spends her days raising awareness and educating others about this form of cancer.
In 2005, Heather Von St. James turned 36, gave birth to a daughter, and was diagnosed with pleural mesothelioma. She was determined to remain positive and stick around to watch her daughter, Lily Rose, grow old.
“Upon learning of this life-altering disease, my husband, Cameron, and I embarked upon a search to find the best mesothelioma treatment care available,” she said. Their search led them to David Sugarbaker, MD, a renowned mesothelioma surgeon. Sugarbaker surgically removed the tumor and her lung.
Prior to finding Sugarbaker, Von St. James’ doctors in Minneapolis, where she lives, ruled out other symptoms. At first they thought she was suffering from postpartum depression; her daughter was born three months before her diagnosis.
“I was exhausted, which is associated with being a new mother,” she explained. “And I was losing weight, which is common for women who breastfeed. However, I was losing weight to the tune of 5 to 7 pounds a week.”
Von St. James was carrying laundry up from the basement when she passed out. Her daughter was asleep in her swing. “I blacked out due to lack of oxygen,” she said. “When I woke up, it felt like a truck was parked on my chest.”
At that point she knew something was really wrong. A chest x-ray discovered fluid around her lungs. Within two months, she found out that she had pleural mesothelioma, a cancer of the protective lining of the lung, which is known as the pleura. It’s caused by inhaling asbestos, and it’s the most common form of mesothelioma.
It differs from lung cancer in that asbestos lodged in lung tissue causes lung cancer, while asbestos in the pleural lining causes pleural mesothelioma.
Von St. James contracted it from her father, who she looked up to. “I was 7 or 8, and he’d come home covered in this grayish-white dust,” she said. Her dad wore a baseball style jacket, which she constantly borrowed. The jacket was chockfull of asbestos. That’s how her exposure happened, she says. Her dad died of kidney cancer. “I was exposed to it because I was constantly around my dad and I breathed in the asbestos dust from his jacket,” she said.
Most people have no understanding of pleural mesothelioma. “It doesn’t get the attention it needs,” she said. “A lot of people believe it happens to older adults, people over 50. I’ve met many people in their 30s and 40s with it. They also believe it only affects old men who worked in the trade for 30 or more years handling asbestos.”
In actuality, there’s a rise of the number of cases of pleural mesothelioma. One of the main reasons, according to Von St. James, is all the DIYers (Do-it-Yourselfers) who are remodeling old homes and handling asbestos. “They’re breathing it in when they’re around asbestos,” she said. “If you’re remodeling a pre-1980s house and suspect asbestos is present, don’t handle it. That’s what the professionals are for.”
Educating others about pleural mesothelioma is Von St. James’ mission. She spends a lot of time in Washington, D.C., talking to congressional leaders about pleural mesothelioma. Her goal is to get a clinical data registry in place. A registry would be completely anonymous, record information about the health status of patients, and track the disease and diagnoses over a period of time.
She also spends a lot of time on the phone listening to people with the disease. Recently, she lost three people within two weeks. “Listening to others with pleural mesothelioma is a profound honor,” she said. “They let me in, and I’m able to offer some glimmer of hope. I cherish the moments I get to know these people.”
She gets a lot of her strength and optimism from her husband and daughter. Her husband worked full time and went back to school to get a better job with good health insurance. “He’s a great caregiver, husband, and father,” she said.
Every February on the anniversary of the removal of her lung, Von St. James gathers with family and friends to celebrate Lung Leavin’ Day. “My sister named it that,” she said.
They take plates, write their fears on them, and then break the plates in a big fire. “We look forward to this every year,” she said. “And we’ve raised over $30,000 for two pleural mesothelioma nonprofits; they are the Mesothelioma Applied Research Foundation and the Asbestos Disease Awareness Organization. Everyone who participates feels empowered.”
Von St. James doesn’t see this illness as a death sentence because she operates from hope and living in the moment. She’s passed her rosy outlook onto her daughter. “Life’s better when you stay positive,” she said.
July 24, 2017
Janet O’Dell, RN