I would like you to meet Heather Von St. James. She is a survivor of a rare cancer called mesothelioma. I thought you might be inspired by her story:
My name is Heather Von St. James. I am a mother, a sister, a wife, and an 11 year survivor to the rare cancer mesothelioma. I am married to the love of my life, Cams and we have a beautiful daughter, Lily and this is my story.
Lily was born in 2005. Just three and a half months after our baby girl joined our family I started experiencing my symptoms. At the time, it was very easy to convince myself that my symptoms were merely signs of postpartum. After all, I had just given birth. During my pregnancy I didn’t gain very much weight. So, when I began to lose an unexplainable amount of weight I started think something might be off. Not to mention, I was so tired, all the time. I never seemed to be able to shake my exhaustion. To top it off, I had a persistent low-grade fever that would plague me each night. Each and every one of my symptoms alone never seemed too serious. Until it happened. I remember putting Lily in her swing and passing out for over an hour and a half. When I woke up I thought there’s no way this can be right. Like anyone new mother feeling that way I headed to the doctor.
Never, in all of my life, could I have ever imagined that these things that were happening to me could be the result of something so awful. On November 21, 2005 I was officially diagnosed - it was cancer. I remember that's all I could hear, cancer. I was given 15 months to live with a diagnosis of malignant pleural mesothelioma. The average age for a mesothelioma diagnosis is 75 for males and 72 for females. But here I was, a brand new mother and it was happening to me.
Mesothelioma clearly does not discriminate. It is caused by exposure to asbestos and is typically found in a person’s lungs or abdomen. It’s a unique and extremely threatening cancer because it has a very long latency period. It can take years after exposure to present any real symptoms. After taking some time to determine when, where and how I was exposed it dawned on me. When I was little I would play in my father’s jacket after he got home from his job in construction. All I remember was it being one of the warmest things ever. It hung right in the entryway of our house and it was always my go-to when I went outside because it meant I wouldn’t get my coat dirty. Sure, it was always dusty but he worked in construction -why wouldn’t it be? I never thought twice about that. Little did I know his jacket was covered in asbestos fibers.
On February 2, 2006 my left lung, one of my ribs, half of my diaphragm and some of the lining of my heart/lung were removed. This experimental procedure, coupled with radiation and chemotherapy, were by best shot at being able to spend more than 15 months with my baby girl. I spent weeks in the hospital and then recovered with my parents in South Dakota accompanied by Lily. It was a very long road to recovery. Cam could only see us here and there. It was an incredibly tough time for my family and me.
One of the biggest things we had to learn was what our new normal was. I now stayed home with Lily while Cam went back to school and furthered his career so he could support us. I was no longer contributing to our household financially as I had in the past, my career that I had worked for so many years towards was now gone.
After a while I learned about mesothelioma awareness conventions and events and different groups that existed in the mesothelioma community. I am thankful for these causes everyday because I realized I was not alone in this fight. I learned that I could help people. It is not only rare to survive this disease but, it is very rare to survive this disease by 11 years. I learned to share my story and connect with people affected by mesothelioma because I could provide them something that is exceedingly scarce in our community, hope. Doctors, statistics, and numbers offer meso patients grim prognoses. My story offers them a reprieve to that reality. This along with blogging for the Mesothelioma Cancer Alliance has become my passion and a huge part of my life. I want to spread hope to as many people as I can. When there is nowhere else to look, the hope that there is someone, anyone who has beaten this cancer and continues to beat it everyday is what most people need.
I have dedicated my life to mesothelioma advocacy so it didn’t take me long to start working toward monetarily benefiting the Meso community through what I call: Lung Leavin’ Day. Ten years ago my sister and my husband decided to turn the anniversary of the day my lung was removed into a celebration. Lung Leavin' Day that would take place each year on the anniversary of my surgery. My sister came up with “Lung Leavin’ Day” and it’s sort of just stuck ever since. This celebration started as me and my family and few close friends shivering around a campfire. It has since grown to a huge gathering of people in person and online that supports several different foundations and organizations in the mesothelioma community.
To date we’ve raised over $30,000 for The Asbestos Disease Awareness Organization and the Mesothelioma Applied Research Foundation. This celebration has become so much more than me and my family surrounding that campfire. Each year, like the ten before, we each write our deepest fears on a dinner plate with a sharpie and smash the plates into a campfire. It might sound silly, but it is one of the most cathartic experiences I have come across. To be able to outwardly express your fear and then symbolically and quite literally smash it – is absolutely invigorating. Each year we try to involve as many people as we can in the celebration. It’s no longer about me, my lungs or even just mesothelioma. It’s about people relying on their community, addressing their fears, smashing them and, healing while doing so.
After my diagnosis you could not have told me I would be where I am today, but here I am. I made the decision that I was going to do whatever it took to raise my baby girl, I was going to fight. 15 months was not enough for me. Along the way I learned that I have more to offer the world than I could have ever imagined. I can offer hope and strength and most importantly, I can help.
Heather has a very powerful story, If you would like to help in the fight against mesothelioma or find hope in your own battle, click the links above and they will take you to websites where you can donate or volunteer in the battle against the cancer called mesothelioma.
* This is not a paid post. No compensation was received for this post.