Rare Survivor

7-Victory

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 mesotheliomaLung 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.

 Lil_HVSJ-2

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.

Cam_HVSJ ADAO-1

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

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19 responses to “Rare Survivor

  1. Thanks for sharing the story. My Great Uncle recently died due to complications with cancer. Keep on keepin’ on.

  2. Wow. Just wow. Words fail me. Unbelievable story. Thanks for sharing.

    Fondly,
    Elizabeth

  3. This is such a touching story, one that tugs at the heart. Cancer has been a big part of my family history, but not mesothelioma. It’s good to learn more about this and raise awareness for it. Thank you Heather and Silvia for sharing this story. I’m so glad you were able to raise your daughter and see her grow up, Heather! What a gift that must be to both of you!

  4. Knowledge can be power, if people would only pause and heed it.

  5. Great public service to help spread the word, Silvia. Mesothelioma is an insidious illness, and lung cancer is the #1 cancer killer among women even though breast cancer gets most of the press, funds and research. I am encouraged to hear she received successful (though extremely difficult) treatment. Her smile with her daughter by her side is priceless.

  6. Silvia….this story touched my heart and my spirit…thank you very much for sharing this blog….I am a good listener, I am right here…i believe in truly prayers…so..I am prayer in silence for her and her daughter….I know very well, what that’s mean, I have a little one, just four years old….I know the feeling…..I know…I know. She will be okay, I will keep my faith and hope for her.

  7. Thank you, Sylvia, for sharing this story in your usual eloquent way. And good advice too. Since I’m currently dealing with bronchitis, the message hit home. This is a courageous woman!

  8. Hi Silvia .. I did meet Heather a few years ago … so am glad to read her update and to now know that treatment is possible – also fascinating to learn how she ‘caught’ the disease: a dreadful one.

    Gosh – she does have an amazing story to tell .. and so wonderful she can watch her daughter grow … a great story to promote and advertise … I’ll pass on this link to a medical student god-daughter of mine …

    Thanks for letting us know about Heather.

    Asbestos is banned in the UK … and if it’s found in buildings … its removal is under very strict guidelines … so we are very aware how dangerous it is … I’m very surprised to read it’s not banned in the States … or that especial care is not required when it is found …

    Thank you so much – Hilary

    • Great to know you’ve met her, Hilary. We corresponded by email. Asbestos is no longer legal to use in construction materials and such here in the U.S., but it was used in the 70s and some of those buildings are still standing. At the fiber/particle level, when it gets into the air, it can be dangerous as in Heather’s case. Thank you for reading.

  9. Reblogged this on Ned Hamson Second Line View of the News and commented:
    Mega-good story and good reminder to be on the lookout for asbestos lurking in your environment – they even required steel i-beams to be sprayed with it as a fire retardant – duh. So it is still in thousands of commercial buildings, and like lead will dry out and get into air inside buildings.

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