Heather (right) with her husband, Cam (left) and daughter, Lily (center).
The attention of much of the nation will be drawn tonight to the much-anticipated first presidential debate. But for Heather Von St. James and thousands like her, September 26th is anticipated as a day to celebrate another year of her death-defying victory over a rare cancer called mesothelioma. Below, in a guest blog post, is Heather’s story, in her own words.
Heather Von St. James’ Story
Mesothelioma Awareness Day… September 26th… A day that will forever hold a special place in my heart and the day that I will also advocate the F**k out of. The day that is a now a part of who I am and who I’m striving to be. The day that gives hope to patients and caregivers. The day that brings such a small, tight knit community together. The day that educates others about this cancer, and rallies for a ban on asbestos. Most importantly, a day that gives hope!
Hope. H O P E. That four letter word gave me the strength to silence the cancerous cells screaming and taking over my body. Almost 11 years ago, just 3 months after giving birth to my daughter, I was diagnosed with Malignant Pleural Mesothelioma. At first I had no idea what that meant, but later researched with my husband Cam and found little to no promising statistics.
Only 3,000 people are diagnosed with mesothelioma each year. On average those patients live between 12 to 21 months. I was told I had just 15. If that held true for me, my daughter might get to have me as part of her life until she turned 1 or 2 years old. But that wasn’t good enough. I wanted more. My hope for the future and determination to be there for my family, especially my newborn daughter, helped me block out all of those facts that often determine a patient’s perception of how their cancer journey is going to play out. Mine would be different. It had to be.
After tough decisions on how to deal with treatments and raising my little girl, I had decided to let my parents take care of her while I headed to Boston to have my life saving operation that removed one of my lungs. My hope was to be out of the hospital in a week, return home, and be back to work in a few short months. Cam told me I should be patient and take my time to heal, but I hoped for the best. I don’t think I realized the difficult road ahead until my kidneys stopped working the way they should. I was stuck in the hospital for 18 days, and had to spend two more weeks recovering in Boston before I could fly home.
Cam had to stay in Minnesota working so we could still pay our bills and afford my treatments. Since I wasn’t strong enough to do everything on my own, especially taking care of an infant, I recovered for several months 600 miles away at my parents’ home. I grew stronger every day and my hope for truly beating this disease grew stronger too. I was able to return home to Minnesota 3 months later. Then I started chemo. These 5-6 hour sessions knocked me out. I couldn’t do much besides sleep, though I thankfully got through these sessions with hardly any setbacks.
When I first received my diagnosis, I hoped I would live to see Lily’s first birthday. She turned one a few weeks after I finished my last chemo session. I still had to go through radiation, but the break was very needed. Some might think of a one year old’s birthday party as being kind of silly, but it meant the world to our family. We didn’t know if we’d ever have this moment, we could only hope.
Not long after our celebration, I faced a difficult 30 days of IMRT (Intensity-modulated radiation therapy) radiation. This was the hardest part of my treatment. Radiation basically zaps any cancer left out of you, and it took a great toll on my body. By the halfway point, I didn’t know if I could go on. I lost a lot of weight, I was dehydrated, and just beyond exhausted. It took all my family’s and the medical staff’s support to really help pull me through those last days.
When it was all over, for a while I felt lost and unsure. My life had revolved around fighting this disease for a year, and now what? I didn’t have a job to return to or any idea what I wanted to do. But as I slowly started to feel better from all the side effects, I began to write about my journey. And I stopped feeling lost and unsure. I realized my journey wasn’t over. Meeting other families impacted by this disease sparked a fire. I could give them hope. I could help raise awareness for mesothelioma and the dangers of asbestos, the toxin that causes it, so others one day hopefully won’t face a similar battle.
Hope. It’s why I will continue to blog and tell patients and their families my story. I can help them hope and fight for their futures. It’s why I’ll continue to lobby in Washington with the Asbestos Disease Awareness Organization and The Environmental Working Group to ban asbestos. The hope for a future without anymore mesothelioma. Until that day, we continue fighting and raising awareness. We won’t stop until that hope is a reality.
