139 Months and Counting: How Heather Outlasted her Mesothelioma Prognosis and Found her Advocacy Voice

She was given 15 months if she didn’t take action.

Heather Von St. James was in the prime of her life. She was the co-owner of a salon/spa where she styled hair (and judging my her own style, she must have been great at it!) and had a newborn baby girl at home. But about 3 months after the birth of her daughter – and after seeing doctors for persistent symptoms like paleness and breathing trouble – she was given the diagnosis of malignant pleural mesothelioma – a serious form of cancer that develops from the thin layer of tissue that covers many of the internal organs (in Heather’s case, her lungs).

And her doctor told her she would likely have only 15 months of life without treatment, as many who have mesothelioma have.

 “I don’t know if words can really describe exactly how I felt. I was stunned. My husband, Cam, had more of an idea about what mesothelioma was than I did at the time and I remember him saying, ‘This is bad.”

But that was 2005.

Almost 11 years (or 139 months) later, Heather has overcome the odds and has made it her mission to share her story and her voice to impact others living with illness, as well as advocating for better treatment development and prevention.

Over 80% of mesothelioma cases are caused by exposure to asbestos; harmful mineral fibers found in substances like wall insulation,vinyl floor tiles, shingles, siding on houses, heat-resistant fabrics, and more. It’s not uncommon for those with mesothelioma to develop the disease years upon decades after asbestos exposure. Heather was no exception:

“As a child, I often wore my father’s jacket around the house to do chores. He worked with drywall, so his jacket was always covered with dust. I had no idea I was breathing in asbestos every time I put on his coat.”

Faced with little options, Heather and her husband Cameron decided to try an experimental treatment in Boston, away from their Minnesota home. Heather not only had to face the already scary prospect of major surgery, but also separating from her newborn Lily; something no new parent wants to do.

But Heather overcame the odds and beat the cancer.

With the help of the doctor who performed her surgery, Dr. David Sugarbaker, she gets herself checked every six months. And while Heather still harbors fears about the cancer coming back, she doesn’t let that stop her from living her life and for advocating for others to do just that.

“I wanted to do something to help others, and consider what I do my calling. It’s my passion and I want others to know they don’t have to suffer like my family did.”

So, since beating mesothelioma over a decade ago, Heather knew she had to pay it forward.

She’s been working with the Mesothelioma Cancer Alliance and volunteering for both the Mesothelioma Applied Research Foundation and the Asbestos Disease Awareness Organization as an advocate to educate others about the dangers of asbestos. She’s also a frequent blogger!

Whether it’s advocating for a ban of asbestos in the US or patient advocacy, Heather has been a fierce and active voice in her community.

 “For anyone going through a terrible disease like mesothelioma, or any disease, it’s important to remember never to lose hope. It’s so important to stay strong during the times you feel like are the weakest. It’s ok to cry, to mourn, to give into those feelings for a while, but don’t let them rule your every thought.”

Thanks for the work you do, Heather!

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