In the lead up to Mesothelioma Awareness Day on September 26, I chatted to the gorgeous, Heather Von St James, whose story is absolutely incredible. Knowing what she and her family have been through over the last 10 years is a reminder of just how much we need our bodies and our health, and what amazing gifts they are. Just little reminder to love and take care of yourself.
1. Tell us a bit about yourself and your story…
My name is Heather Von St James. I’m a wife, mom to a 10 year old daughter, and proud owner of a few furry family members as well. I love summer and warm weather. I love being outside and working in the yard. I’m a camper, boater and life lover. Up until being diagnosed with mesothelioma, I was a busy salon owner and stylist. I loved my job, but life had a different plan for me. I was diagnosed on November 21, 2005 with a disease called malignant pleural mesothelioma, a cancer that is caused by asbestos exposure. My daughter was just 3 months old. I was getting into the swing of things and adjusting to motherhood when the illness struck. It was a series of symptoms that finally added up to the diagnosis. I was referred to Brigham and Women’s hospital in Boston to the International Mesothelioma Program. They put me through a series of tests to see if I was a candidate for surgery. Two days before Christmas in 2005, I got the phone call I had been waiting for. The surgery I was scheduled for was called an extra pleural pneumonectomy. It entails the removal of the pleura, which is the lining of the lung, where the cancer was, the left lung, the 6th rib, the left half of my diaphragm, the lining of my heart, both of which were replaced with surgical gore-tex.
During the surgery, a chemotherapy solution was here to 140 degrees f, and pumped into the now empty chest cavity. After an hour of application, the solution was pumped out and I was sewn up and sent to recovery. I spent the next 18 days in the hospital due to some post surgical complications. I spent 2 more weeks in Boston, just to make sure all would be ok, then I returned home to my childhood home where my daughter had been living with my parents while I had surgery. I was not able to care for her on my own yet, so I lived with my parents for 2 months.
My husband stayed at our home in Minnesota to work. Just because one gets sick, doesn’t mean the bills stop coming! I’m so thankful I was able to stay with my parents during this time. When I returned home, I started chemotherapy. I had 4 sessions of chemo, 3 weeks apart. I finished chemo at the end of July, just in time for Lily’s 1st birthday. We threw a huge party, and then a month later I started radiation. I underwent 30 sessions of radiation and finished up treatments almost a year after my first symptoms appeared. I was cautiously optimistic that all the things we did to get rid of the cancer worked, and at my next appointment in Boston, I got the news that I was all clear.
- What are you passionate about?
My family means the world to me. I pretty much spent the first year of Lily’s life sick, after being told I only had about 15 months to live. It was hard to hear, but eventually a quiet determination set in. I was not going to let my baby girl grow up without her mother, nor my husband without his wife. I had to beat this, and I was going to so that I could stand proud next to my family and show others that with hope, the odds don’t matter. My family is what got me through my entire cancer experience. That, and some of the most brilliant doctors I’ve ever met. My passion now lies in being able to be the voice of so many who weren’t fortunate enough to beat their battles like I did. My ultimate goal is to never see what we experienced happen to another family.
- What is the best piece of advice you ever received?
Never fry bacon naked.
Ok, all joking aside at my first follow up appointment with my Surgeon, Dr David Sugarbaker, he told me to go home and live. Put this diagnosis at the back of your mind and live your life, you owe that to yourself. Even though I advocate for others, I very much put his advice to use.
- What does a day on your plate look like?
Every day is different. I spend time online or on the phone helping out the meso community. I do a lot of work with the Asbestos Disease Awareness Organization and The Mesothelioma Applied Research Foundation as well blogging for Mesothelioma.com. I talk with patients, and if they happen to live nearby, I go visit them. I love gardening, and in the summer, will spend hours in my garden with my flowers. I volunteer at my daughter’s school during the school year doing various things, so I’m busy being a mom and wife. Sometimes I look back at the end of the day and wonder how many hats I wear during a day. I find myself doing something different every day. I’m rarely ever bored.
- What do you do for yourself to show love?
I love taking care of people. Have you ever heard of love languages? Mine is Acts of Service. I love doing small thing for people that make them feel good, it gives me that warm fuzzy feeling. Whether it be a random act of kindness, or buying my husband’s favourite ice cream for him, playing a game with my daughter, or cooking her favourite foods, those things are how I show love.