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Mesothelioma Awareness: Getting to know Heather Von St James

04 April 2014

Mesothelioma Awareness Week. April 1st-April 7th.

What is Mesothelioma? According to the Mayo Clinic, It is a form of aggressive cancer, that affects the thin tissue that covers and protects organs (mesothelium). Treatments for this cancer is available, but there is no known cure. It most often is found on the mesothelium of the lungs, which is called pleural malignant mesothelioma, but other rare forms, this disease attacks tissue in the abdomen, around the heart, and around the testicles.
Some symptoms of this disease include:
Pleural mesothelioma
  • Chest pain under the rib cage
  • Painful coughing
  • Shortness of breath
  • Unusual lumps of tissue under the skin on your chest
  • Unexplained weight loss
Peritoneal mesothelioma
  • Abdominal pain
  • Abdominal swelling
  • Lumps of tissue in the abdomen
  • Unexplained weight loss
 The main cause of this disease, is contact with asbestos, which has been discovered as a human carcinogen. Asbestos was extremely popular at the end of the 19th century up until 1980s. Doctors and medical professional started seeing a link between asbestos, and chronically ill individuals who worked in asbestos mining towns in the 1900s. Most companies knew the dangers, but decided to hide it from the public, just to earn a buck. Now, people are taking this seriously. There are stricter regulations on the use of asbestos, and safety regulations in place when working with it.
Meet Heather Von St James. She recently reached out to me, asking me to bring awareness to this deadly disease. Heather was diagnosed with Mesothelioma in 2006, at the age of 36, shortly after the birth of her first child. She was given 15 months to live, unless she had her lung removed. Eight years later, she is still here with us, and spreading awareness. I decided to interview her, via email, to get more information on this disease, and to spread awareness through her personal battle.

Heather Von St James
"Asbestos, the only known cause of mesothelioma, was used throughout the U.S. military in literally hundreds of applications. One third of diagnoses are members of the military due to the past use of asbestos in naval ships, military buildings, vehicles, etc. Another reason why I have made it my mission to spread awareness regarding its dangers."

1:) How did you come in contact with asbestos?
My dad was a construction worker when I was growing up. A lot of the work he did in the early days of his career was the clean up and sanding of drywall, as well as demolition. Tearing out Sheetrock, insulation, and other things that had asbestos in them.. He would come home with a dusty coat, and I would hug him, or wear his dirty coat to do chores, like feed my rabbits outside. I didn't want my coat getting dirty, so wearing dads was what I did.  Little did we know that dust would make me sick years later.
2:) Were you aware of the symptoms of mesothelioma?
I had never heard the word mesothelioma until that day in my doctor’s office. So  aware? Not even close.
3:) When did you first suspect something was wrong?
Soon after I had my daughter, Lily, I started having odd symptoms. I had a low grade fever that wouldn't go away, I had no appetite, despite the fact I was breast feeding my daughter, news losing weight at a rapid pace, 5-7 lbs a week. Then about 3 months after having her, I had a hard time breathing. It felt like a truck parked on my chest. I couldn't take a Deep breath, and the final straw was the fatigue. The bone weary feeling I had And I just could not get enough sleep.
4:) What symptoms were you having that caused you to seek medical help?
The fatigue and breathlessness were what finally forced me toad it something was seriously wrong. I couldn't walk up a flight of stairs without gasping for breath, and one day after getting laundry out of the basement, I passed out on the couch for an hour. I was terrified when I woke up. Thankfully Lily was napping through it, so she was safe. I called my doctor right then and went in to see him.
5:) What was your reaction when you were first diagnosed?
Shock, disbelief, fear, then determination. I would beat this. I HAD to. To me dying was not an
6:) When you were diagnosed, you were given 15 months to live Unless you had surgery to remove your lung. Did you do it, or did you use alternate treatment? How did you feel when you realized you beat the odds?
My husband said without batting and eye, "Get us to Boston... " like I said before, dying was not an option.. I had my lung removed on Feb 2nd, 2006, followed that up with chemo and radiation. We threw everything at this that we could. Beating the odds feels really damn good!!!! 4 years was my first personal milestone. I had gotten my drivers license renewed right before my surgery, so when I went to renew it again, I was ecstatic. I just renewed it for the 2nd time. THAT was awesome. I was never supposed to be alive to do that!!
7:) How did you balance treatments and having a new child to take care of?
I had a lot of help. You know the saying "It takes a village"? That is quite literally the case. We had out own little village of people that helped us out. Lily lived with my parents in the first months during and after surgery, there was no way I could take care of her during that time. So having the help was vital. Lily has such an amazing bond with my mom and she and my dad were insuperable until he passed away..  When I finally was able to move home and start chemo and radiation, we had many family and friends who pitched in to take care of Lily while I was in treatment.. Then as things settled down, we got into a nice rhythm. It was just something we had to do, I didn’t think much about it.
8:) Anything you want people to know about this disease?
It is so much more than a commercial on TV. If you think you he been exposed to asbestos, educate yourself on the symptoms and find a doctor who will listen. More and more people are having longer and longer lives despite a Meso diagnosis, and I believe early detection is key. There are great strides being made in the treatments and there is an entire community dedicated to helping one through the journey.
To hear more about her amazing journey, and for more information on asbestos and mesothelioma, got to  Dying to be Heard .

*A very special thank you to Heather, who trusted in me to spreading awareness! I am so glad you are still with us today, and it was truly a blessing to be able to talk with you!*

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