Beating the Odds: One Woman's Story of Survivorship

Posted On Monday, 12 September 2016
Beating the Odds: One Woman's Story of Survivorship

Life as I knew it changed very drastically in 2005. Not once, but twice.

In August 2005, I gave birth to my beautiful daughter, Lily Rose. She was a true blessing, and my husband Cameron and I could not have been more excited. Three months in, we were still learning the ropes of parenthood; so excited and so blessed. The only problem was that I felt absolutely awful. I was losing weight, I couldn’t breathe... I knew something was wrong.

In November of 2005, I got my diagnosis: mesothelioma. Malignant pleural mesothelioma, to be specific. My husband saw the terror in my eyes when the words came from the doctor's mouth. From researching online, you can quickly find out that the prognosis of mesothelioma is grim. Most patients are given about 15 months to live after diagnosis. I knew that I couldn’t be a part of that statistic. I needed to beat this.

All the while, thoughts and questions were racing through my head. One: how did this happen? Thinking back to earlier in my life, my father worked construction and would come home, his coat covered in dust. That dust, unbeknownst to any of us, contained asbestos, the toxic fiber that caused my cancer. I would put on his jacket to do chores and play outside, not knowing that that particles I was breathing in were so harmful.

Mesothelioma has an extremely long latency period. Most people do not develop symptoms until 20-50 years after their exposure. Since I was exposed so young, that is why they caught it at an earlier age than most. Typically you hear of older people, who have been exposed due to their occupation, getting this type of cancer.

The doctor that gave me my diagnosis told us about an experimental procedure that was done in Boston, at Brigham and Women’s Hospital. Without a second to think about it, Cameron said “get us to Boston”. The thought of leaving my baby girl was horrifying. I didn’t know when, or even worse, if, I’d see her again. That was truly my biggest fear. If cancer took me, I could not raise her. She would go off to school motherless. I begged God to keep me around for her.

Cancer takes the control away that you thought you once had and replaces it with fear. Fear of the unknown. Fear of your fate. I decided I needed to take those fears and gear my energy towards spending time with my daughter and husband. If I could not control what would happen to me, I could control the moments I had in the present. I could spend moments enjoying life with my family.

The next fear that shook me was treatment. First, I flew to Boston for surgery. I had one of my lungs removed. I underestimated the time it’d take to recover... big time. Cams reassured me. He told me to be patient and that it takes time. Recovery was not easy.

A month after my surgery I was able to fly home...finally! That meant going to stay with my parents in South Dakota, while Cameron stayed in Minnesota to work so we could pay the bills. I needed to be with my parents because at that point I was unable to care for Lily on my own. This was tough, and being so far from one of my biggest supports was a challenge. We made it work, though. We did everything we could possibly do to get through this.

After coming home, I went through several chemotherapy treatments. It really beat up my body, and left me fighting new problems. My kidneys were not filtering toxins in my body very well, due to the heated chemo during surgery. I prayed for it to get better. My husband prayed. My friends and family prayed.

Heather-LilyWhen I finished my last chemotherapy treatment, is was time for Lily’s first birthday! I had a couple weeks to plan, which was nice. We had so many friends and family come out to celebrate with us. This was a mammoth milestone. I didn’t know if I would see this day, so being able to celebrate it was amazing.

Next on the agenda was not as enjoyable. I began my radiation treatments. Thirty to be exact. For 45 minutes to an hour my body would be cooked from the inside out. This was tough. I remember getting halfway done with treatments, and thinking I could NOT do it. I cried sitting there, feeling so run down. I was dehydrated and could barely eat. I had lost almost 100lbs. The nurses were so supportive. They let me cry, and held my hand. They told me if I wanted to I could leave, but at that point I knew I had to finish this.

In mid-October I was officially done with radiation. It was one month straight of daily radiation treatments, while my friends and family took turns caring for Lily. This should have been a really happy time... a time for celebration. But, I couldn’t help but feel alone and unsure. I had no job to go back to, and my body needed a lot more time to continue healing from the treatments.

At that point, I knew I needed to start sharing my story. More people needed to know about this disease, so that is when I began blogging.

Since then, I have made it my mission to spread awareness for this disease, caused by an awful substance that is NOT banned in the United States. I will not stop fighting, because I do not want anybody else to go through what I went through.

I also want people to know, there is hope! A cancer diagnosis can break you and feel like a death sentence. You need to have hope and fight.

Heather Von St. James

In 2005, at the age of 36, and only three months after giving birth to a beautiful daughter Lily Rose, Heather Von St. James was diagnosed with pleural mesothelioma. Upon learning of this life-altering diagnosis, Heather, together with her husband Cameron, embarked upon a search to find the best mesothelioma treatment care available. Their search eventually led them to Dr. David Sugarbaker, a renowned mesothelioma surgeon at the Boston based Brigham and Women's hospital. Dr. Sugarbaker recommended a relatively new surgical procedure called extrapleural pneumonectomy, a groundbreaking treatment option offered through the International Mesothelioma Program. Although there were some risks associated with the procedure, it also carried promise for the best possible outcome. Heather, with full support from her husband and family, agreed to have the surgery.

Today, Heather Von St. James is a ten-year mesothelioma cancer survivor and continues to provide unending inspiration to mesothelioma victims around the globe. She carries out her mission to be a beacon of hope for those afflicted with mesothelioma by sharing her story of faith, love and courage both as a keynote speaker at conferences and through social media forums.


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