Patient story: from cancer survivor to advocate

Apr 21, 2017
Patient story: from cancer survivor to advocate

I didn’t wake up one day and say to myself: “Today I will be an advocate.” Like most people, the mantel was placed upon me by circumstance, not a desire to do it. I have realized that not only do I LOVE being an advocate, but it is something my whole life has prepared me to do.

My cause is malignant mesothelioma and asbestos education after being diagnosed with mesothelioma shortly after the birth of my only child, Lily on November 21st, 2005.

Mesothelioma is rare. I had never heard of it until I was diagnosed. It is a disease that is almost always caused by asbestos exposure and has an incredibly long latency period, anywhere from 10–50 years from exposure to getting one’s diagnosis. That coupled with the fact that the symptoms are often attributed to a variety of other ailments makes getting a correct diagnosis very hard.1

I was fortunate. My doctors listened to me and wouldn’t give up until they found the right answers. I had never felt so alone. Everything I read had me dead in 18 months. My own doctor told me I only had 5 months if I didn’t do anything. Thankfully, he was prepared and sought out the best options for me. He referred me to a specialist who was in Boston at the time.

While I was in the hospital, I was asked by the staff to speak with other patients and their families. I guess they saw something in me that I did not yet see in myself! Many relationships were formed during that time, relationships that continue to this day.

My doctor and his staff have been some of my biggest cheerleaders. As I returned to Boston for check-ups, they would ask me to speak at the new patient orientation to show new patients that there is hope.

Hope is the single most valuable tool in your fight against cancer, and basically all advocacy starts with instilling hope. I found that I loved this, I THRIVED on it! I started seeking out opportunities to share my unique story and found that people were inspired. I’ve found allies in the mesothelioma and greater cancer community who have helped me on my advocacy journey.

I honestly think that being an advocate comes about after something touches or changes you on a foundational level. For me, it was my cancer battle and the isolation I felt after. I vowed that I wanted others to know they were not alone, and that there were people who have gone through it.

I’ve gotten involved in the mesothelioma and cancer community by finding organizations that mirror my passions. Through the Mesothelioma Applied Research Foundation and the Asbestos Disease Awareness Organization, I have found a community where I can get involved and help others. I started raising money to support both organizations and participate in their annual conferences.

Gathering of Warriors and Caregivers at the Asbestos Disease Awareness Organization Conference in 2016

I also started blogging just over 5 years ago to get my story out there and help others. Mesothelioma is so rare that often people struggle with their doctors not knowing enough and basically giving them a death sentence. That’s when people usually find me. I’m able to serve as a conduit to help get them the information they need and find a specialist who can help them. I have taken the time to educate myself on the many aspects of this disease and learn where the specialists are located, so I’m better equipped to advise.

Through my advocacy, I have learned I am there to listen. It’s not my job to give medical advice because I am not medically trained. It is not my job to decide what is right or wrong for the person. My job is to get them information. My job is to support them in their decisions.

Being an advocate is not for everyone. It is oftentimes heartbreaking. Many times, the patients I have gotten to know during the worst time of their lives do not live long past their initial diagnosis. Often, the cancer comes back and they must go through the process all over again. I am with them through all the up and downs. I celebrate the good times and cry with them during the bad. But I have also learned it is an honor and a privilege to become a trusted confidant to these families at this time. Lifelong relationships have been forged during some incredibly trying times, and I take away something from each relationship.

If you think being an advocate is something you might want to get into, I say go for it. Find your passion and your community and start volunteering. Tell your story as to why you are passionate about your advocacy, and open your heart to the possibilities. You will be pleasantly surprised at what comes your way.


Reference

  1. Mesothelioma Cancer Alliance (2017). Mesothelioma Cancer. Available at: https://www.mesothelioma.com/mesothelioma/ (accessed April 2017).
Patient story: from cancer survivor to advocate

In 2005, at the age of 36, Heather Von St. James was diagnosed with malignant pleural mesothelioma, three months after giving birth to her beautiful daughter Lily Rose. Heather was given 15 months to live but after a life-saving surgery by Dr. David Sugarbaker, Heather has outlived her best case prognosis of 10 years and is an 11 year mesothelioma cancer survivor. Heather lives in Roseville, Minnesota with her husband Cameron and daughter Lily.

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