Diagnosis and Initial Shock
In 2005, at the age of 36, Heather Von St. James was living what she thought was a dream life. She had just given birth to her daughter, Lily, three months earlier, and was embracing the joys of motherhood. But a persistent cough and overwhelming fatigue led to a devastating diagnosis: pleural mesothelioma, a rare and aggressive cancer caused by asbestos exposure. Heather’s world turned upside down. The doctors gave her a grim prognosis of just 15 months to live. The emotional weight of potentially leaving her newborn daughter and husband, Cameron, was crushing. “I felt like the air was sucked out of the room,” Heather recalls. “How could this happen when I finally had everything I wanted?”
Heather’s exposure to asbestos traced back to her childhood, when she would wear her father’s work jacket, unknowingly coated with asbestos dust from his job in construction. The realization that a seemingly innocent act from decades ago could threaten her life now brought waves of fear, anger, and disbelief. Yet, amidst the chaos, Heather made a choice: she would fight, not just for herself, but for Lily, who deserved to grow up with her mother.
The Fight for Survival
Determined to defy the odds, Heather sought out the best possible treatment. She and Cameron traveled to Boston to consult with Dr. David Sugarbaker, a renowned mesothelioma specialist. He offered an experimental procedure called extrapleural pneumonectomy, which involved removing her left lung, part of her diaphragm, and the lining of her heart. The surgery was risky, but Heather saw it as her best chance. “I was terrified, but I kept picturing Lily’s face,” she says. “I wanted to be there for her first steps, her first words, her first everything.”
The surgery was a grueling eight-hour ordeal, followed by chemotherapy and radiation. Heather’s physical recovery was painful, but the emotional toll was equally challenging. She grappled with the fear of recurrence and the guilt of burdening her family. Yet, Cameron’s unwavering support and Lily’s smiles became her anchors. “Every time I felt like giving up, I’d look at my daughter and know I had to keep going,” Heather shares.
Lung Leavin’ Day: Turning Fear into Celebration
Two years after her diagnosis, Heather created a unique tradition called “Lung Leavin’ Day,” celebrated annually on February 2, the anniversary of her surgery. The event began as a way to reclaim power over her fears. Friends and family gather to write their fears on plates and smash them into a bonfire, symbolizing the release of emotional burdens. “It’s about letting go of what holds us back and embracing life,” Heather explains. What started as a small gathering has grown into a global event, raising awareness about mesothelioma and asbestos dangers.
Lung Leavin’ Day reflects Heather’s emotional transformation. The ritual helped her process survivor’s guilt, a heavy burden as she met others who didn’t survive. “I’d ask, ‘Why me? Why am I still here?’” she admits. Channeling that guilt into advocacy gave her purpose. She began sharing her story publicly, speaking at conferences and connecting with patients worldwide.
Advocacy and Inspiring Others
Now, over 19 years since her diagnosis, Heather is a beacon of hope for the mesothelioma community. She’s a vocal advocate for asbestos bans and patient support, working with organizations like the Mesothelioma Applied Research Foundation. Her blog and social media presence offer practical advice and emotional encouragement to newly diagnosed patients. “I tell them to find their tribe—people who get it,” she says. “You don’t have to do this alone.”
Heather’s emotional journey is one of resilience, love, and purpose. The fear of losing her family drove her to fight, but it’s the joy of living for them that keeps her going. She treasures milestones with Lily—now a young adult—and Cameron, from school plays to family vacations. “Every day is a gift,” Heather says. “I’ve learned to live with intention, to make every moment count.”
A Legacy of Hope
Heather’s story is a testament to the power of hope in the face of a dire diagnosis. She acknowledges the emotional scars—moments of doubt, the weight of survivor’s guilt—but chooses to focus on gratitude. “Mesothelioma took a lot, but it gave me perspective,” she reflects. “It taught me what really matters.” Through her advocacy, Heather continues to inspire others, proving that even the darkest diagnoses can lead to a life filled with purpose and love.
For more information on Heather’s journey or to connect with mesothelioma resources, visit https://mesostory.org