I Survived A Rare Type Of Cancer, Now I Spend My Life Raising Awareness & Money For Research

By Heather Von St. James

I‘ve been around the cancer community for 11 years since being diagnosed with malignant pleural mesothelioma in November of 2005. See, I had never heard of it either until that day. Mesothelioma is the cancer of the lining of the organs. There are 3 main types: pleural, which affects the lung and is what I was diagnosed with; peritoneal, which affects the abdominal region; and pericardial, which affects the heart.

Mesothelioma is rare, with only about 3,000 people diagnosed each year, and it is almost always caused by asbestos exposure. Mesothelioma has a long latency period, anywhere from 10-50 years. What that means is you can be exposed to asbestos, but not become sick until many years later. I was exposed when I was about nine years old, and was diagnosed at age 36, just 3 1/2 months after my baby was born.

I was given 15 months to live. I was scared. I was angry. I was also determined. I spent the next year in treatment, recovering from having my left lung removed and numerous chemo and radiation treatments.

Even after surviving a few years, I still get people who assume that as a cancer survivor I had breast cancer. Every year I have a celebration on the anniversary of my surgery to remove my lung, we call it Lungleavin’ Day, remembering the day my lung left. Every year I get a great big balloon saying, “Another Year of Fabulous.” It is huge and has a hot pink feather boa around it. I explain how I’m a cancer survivor and we’re having a celebration, and every year the clerk at the balloon store makes a comment.

“At least the boa is the right color!” she’ll say, noticing the hot pink boa and attributing it to my story. I calmly take a moment to educate them that not every woman suffers from breast cancer. But when I mention I’m doing a race, people always seem to ask if I’m doing the 3-day walk. I kindly educate them that it’s not for breast cancer.

It’s days like those that I get so frustrated and become even more determined to raise awareness for mesothelioma, since it’s such a rare cancer and lags behind other more recognizable cancers in terms of funding.

Here are some startling facts. Lung cancer kills more women than breast cancer does, but gets a fraction of the money for research. Mesothelioma isn’t even mentioned in most reports. The demographic for women is on the rise in mesothelioma, yet awareness and research are light years behind where it needs to be.

As an 11 year survivor, I have made it my life’s work to not only bring awareness (and a face) to this rare cancer, but to raise money for much needed research and lobby the United States government to ban asbestos. It makes me feel utterly ignored when I see how little funding there is for this cancer in comparison to cancers that draw more attention and support. All I’m saying is research matters. That is where the difference is made. Next time you purchase something because it helps raise awareness, read the fine print to see how much money is really going to research, and more importantly, where it’s going.

I am in no way disparaging my breast cancer warrior sisters. I have a ton of respect for them and what they’ve gone through! To me, they are some of the strongest, most amazing women I’ve ever met and I’ve had this same conversation with them. You know what? They agree with me!

Fighting breast cancer – or any other type of cancer – is not easy. Cancer research is vital and now for the first time ever survival rates are climbing! This is why I am so passionate and dedicated to my mission.

Awareness is key, but research is life.

 

 

 

Heather Von St. James, is an 11-year mesothelioma cancer survivor who was diagnosed at the age of 36. After the removal of her left lung and defeating mesothelioma, she works as an advocate spreading awareness on mesothelioma, while providing support and hope to others suffering from the rare cancer. Heather lives in Minnesota with her husband Cam and daughter Lily,  along with a handful of pets!
You can follow her on Twitter.

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