Rare Survivor

Cancer — a shocking diagnosis, triggering fear that strikes to the bone. Even in best-case scenarios, as those affected know, looking ahead tests every granule of strength.

Until recently I knew precious little about a form of cancer called mesothelioma. Lung cancer brings to mind smokers, but mesothelioma goes beyond smoking, or exposure to second-hand smoking, the risk factor being exposure to asbestos.

The Patient

Last week I received an email from someone I’ve never met, Heather Von St. James, a rare mesothelioma survivor, cancer advocate, and Huffington Post blogger, among other sites. She asked if I would help share her story, and couple of email exchanges later brought us here.

If you goggle her name, Heather’s story is sure to overwhelm.

At the age of 36, soon after the birth of her daughter, Heather fell ill. She was losing weight rapidly, had no appetite, and felt like a truck had parked itself on my chest.

After a CT scan and a myriad of tests, she was diagnosed with malignant pleural mesothelioma. With no intervention, she had 15 months to live. But she couldn’t do that; she had a daughter to raise.

The Choice

When told about a unique surgery performed in Boston (over 1000 miles away) called extrapleural pneumonectomy, Heather and husband Cameron tidied up their affairs and got on a plane.

The procedure, developed by Dr. David Sugarbaker, involved removing the left, cancer-ridden lung, left half of the diaphragm, and lining of the heart. The sixth rib was also removed for access to the chest. Surgical gore-tex replaced the diaphragm and the lining of the heart. A heated chemotherapy solution was pumped into the chest and washed around for an hour, then pumped back out.

The treatment involving chemotherapy and radiation was something to endure, and the recovery took about a year. 

Rare Survivor & Advocate

I imagine nothing makes one an advocate for research and awareness more than having survived not only the disease, but the doubt and poking and prodding and pain.

To help those finding themselves in similar situations, Heather spends time with newly diagnosed patients during biannual visits to Boston for checkups. She works as conference speaker and research advocate, sharing her story any place she is received.

And she gets to see her daughter grow up.

 

How was she exposed to this deadly substance, you might ask? In her own words: My cancer was caused by wearing my dad’s work jacket that was covered in asbestos fibers to do outside chores when I was little.

But exposure is wide and varied. The substance, not banned in the U.S., was used in the ‘70s and is still found in buildings and products today. Since symptoms are similar to other lung diseases, the goal is to speak up, to make sure people know how to keep their lungs safe, as Heather said.

Knowledge is Power

Some facts to be aware of: 1. If possible, avoid exposure to toxic substance; 2. Don’t smoke (exposed smokers are at higher risk);  3. do your part in fighting pollution (save energy, go green, be mindful of products containing asbestos: appliances, garden items, toys, as some toys made overseas contain asbestos).

Here’s to hoping that  similar heart-wrenching stories will have the same happy ending, and those sitting in a doctor’s office right now, crying in shock, will soon be declared survivors.

Many thanks to Heather Von St. James for reaching out and sharing her story. She’s very passionate about raising awareness, replies to emails faster than most people I know, and can be found on Facebook and Twitter.

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Photos courtesy: Heather Von St. James