ADAO Interview with Heather Von St. James, a Mesothelioma Warrior with a Voice Heard Around the World - ADAO

Posted on January 13, 2015

Heather Von St James is one of the most inspiring people I have ever met. She was diagnosed with mesothelioma at the extremely young age of 36, only 3 months after her adorable baby girl was born. Although this tragically transformed her life, Heather was determined to beat the disease, continue her long loving marriage, and raise her daughter – Lily Rose. Now she is an 8 year survivor and continues the fight for herself and for the community at large. She has become a strong advocate for The International Mesothelioma Program and Dr. David Sugarbaker’s work and the Mesothelioma Applied Research Foundation. She, along with her husband, blog for the Mesothelioma Cancer Alliance and Huffington Post.

She spends her spare time volunteering at her daughter’s school, being with friends and family, and living life to the fullest. Heather has also started her annual Lungleavin day, which is in its 9th year. Heather and her husband, Cameron have hosted this day in their home, where people write their fears on a plate and throw their plates in the fire. She says the day is “to not only commemorate the loss of my left lung due to mesothelioma, but a day and time to conquer fears and celebrate LIFE!!!”

Last year, at ADAO’s 10th Annual International Asbestos Awareness Conference in Washington D.C. Heather was awarded with the Alan Reinstein Award for her perseverance and dedication to commitment to education, advocacy, and support to countless patients and families. Heather’s favorite quote is, “Life is a banquet and most poor suckers are starving to death.” This is how she lives her life. Her goal is to bring about hope to mesothelioma patients and awareness regarding the disease. Heather, thank you for powerfully using your voice to raise asbestos and mesothelioma awareness.

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Heather’s Interview

Linda: As a new mother, please share what were your first symptoms you experience that lead you to your diagnosis?
Heather: I had just had a baby 3 months prior, and just felt like crap.. I had a low rate fever that would not go away, shortness of breath, and fatigue.. not normal “new mom “ fatigue.. this was a bone weary feeling.. beyond anything I had felt before. Plus I was losing a lot of weight… like 5-7 pounds a week.

Linda: How did you find and build your medical team?
Heather: My family physician was incredibly intuitive. I credit him with getting me to the right local doctor that was best equipped to deal with me. It was the pulmonologist, Dr James Flink, who found the tumor and recommended that I go to Boston to see Dr. Sugarbaker.

Linda: Tell me about your Lungleavin Day Celebration (LLD).
Heather: LLD was born out of the desire to take something negative, turn it around and reframe it into something positive. My sister and my husband dreamt it up when I was to undergo my surgical biopsy in Boston. It helped them pass the time dreaming up the celebration. Every year, on the first Saturday in February, we celebrate the day my lung left, hence: Lungleavin Day. We have about 70 or 80 of our closest friends and family come to our home. we serve the official foods of LLD. Sloppy Joes and gourmet cupcakes… other goodies… a hot chocolate bar, and any drink you could want. The tradition is to take a plate, and on said plate, you write your fears, obstacles, or anything that is holding you back. Then you take your plate into our back yard where my husband Cameron has a huge bonfire roaring in the fire pit. Take your plate, and smash it in the fire… along with your fears. It is a very cathartic release!

Linda: How is your LLD on February 7th going to be different?
Heather: I’m once again doing a fundraiser, but am selling t-shirts and stocking caps to raise money. I will ship them anywhere to anyone who wants them. All proceeds go to ADAO and MARF, I will have info on my Facebook page.

Linda: How can people support LLD even if they can’t attend?
Heather: You can donate to ADAO in my name.

Linda: What is your advise for newly diagnosed patients and their families?
Heather: Find a specialist, someone who knows what they are doing with mesothelioma. Surround yourself with support. The meso community is incredible and supportive. I love these people!!

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