Thursday, February 25, 2016

Surviving Mesothelioma

I had a reader reach out to me to see if I'd be interested in helping bring awareness to mesothelioma (a rare form of cancer) and rare diseases in general. It was a no-brainer for me to participate. As an oncology nurse, I all too often see people suffer the effects of cancer. As a daughter, I've seen two parents fight the disease. I think it's always important to put a face to an illness, so to speak. It's no longer just a disease that's difficult to pronounce. It becomes real. It's someone's child, someone's brother or sister, someone's friend, someone's spouse, someone's parent. It could just as easily be you or me. With that said, I hope you'll read on to find out more about mesothelioma and more importantly, to learn more about Heather Von St. James, an amazing woman who is using her status as a cancer survivor to put a voice to rare diseases.
In November 2005, Heather was diagnosed with malignant pleural mesothelioma. She was only 36-years-old at the time, and she had a newborn at home...a baby girl named Lily.

When Heather was a young child, she fondly remembers trying on her father's work jacket. He worked in drywall construction, and neither of them had any idea at the time what exactly they were exposing themselves to.

Exposure to asbestos is the primary risk factor for mesothelioma. Unfortunately, years ago asbestos was widely used in insulation, flooring, and roofing. When asbestos is broken up (such as during removal of insulation), dust forms, which can easily be inhaled or may cling to one's skin or clothes...thus exposing others to asbestos. If asbestos fibers are inhaled, they can irritate the lungs, and in some rare but important cases, mesothelioma can result.

 When Heather was diagnosed, she remembers her doctor asking her if her father was a miner or if he worked around asbestos. She recalled proudly wearing his work jacket, feeling like a big girl in her dad's work clothes. 

 Without treatment, Heather's doctor gave her 15 months to live. She was only 36; she had a three-month-old at home, and she had a husband who needed her. Thankfully, Brigham and Women's Hospital in Boston specialized in an experimental procedure for those living with mesothelioma...this procedure had the potential to greatly extend Heather's life.

 One month after surgery (which included the removal of her left lung), Heather was able to return to her parents' home, where they cared for her until she was physically strong enough to care for herself. Soon after Heather returned home to be with her husband, Cameron, and daughter, she started chemotherapy. Intense radiation followed...30 sessions to be exact. Once treatment was complete, Heather received a diploma...and she felt like she was supposed to celebrate her newfound freedom from cancer, but it wasn't quite so easy for her. She eloquently recalls those feelings on her blog: "Why did I feel so lost, so alone? It was one of the lowest points in my whole journey. I had spent the last year of my life fighting tooth and nail against this cancer that invaded my body. I fought every day with my entire being, and now? I get a piece of paper?"

 Like many cancer survivors, Heather was unsure what the future held for her. Even though she was cancer-free, she still experienced many side effects from treatment. Prior to her cancer diagnosis, she was a salon owner and hairdresser. Standing for hours on end wasn't an option anymore. She was living with one lung, and her body just wasn't the same.

Heather writes on her blog: "Slowly, I started to heal. I started writing. I started sharing my story with people. I felt empowered by the positive response and before long, my feeling of being lost and not knowing what to do was replaced with a new passion. Awareness." She goes on, "As my health returned, so did the fire."
Rare diseases are classified as diseases that affect less than 200,000 people at any given point in time. Only 5% of rare diseases have a cure. And what's even more astounding...asbestos exposure is the known risk factor for mesothelioma, and it's still being used in some forms in the United States.
Mesothelioma is considered a rare disease because there are only about 3,000 new cases diagnosed each year in the United States. While that's a low number, it's still entirely too high. Even if just one person were affected it'd be too high. Every life matters; everyone's health matters.
Heather works tirelessly with The Asbestos Disease Awareness Organization and The Environmental Working Group to put a voice and a face to mesothelioma. Her goal is to educate others and to fight for a ban on asbestos.

"While I have suffered many losses in the last 10 years, what I’ve gained is far more profound. I found my voice, my true self. I’ve found that when faced with incredible odds, I am stronger than I ever thought I could be. I’ve found and surrounded myself with friends and warriors who, like me, live every day to the fullest."
Today, Heather is celebrating 10 years cancer-free.
Thank you, Heather, for allowing me to share your story. To learn more about her life and mission, visit:
Visit to learn more about rare diseases and Rare Disease Day.
Statistics used in this post regarding malignant mesothelioma were gathered from the American Cancer Society's Web site.