Heather Von St. James

Now what?

That’s what I asked myself as I sat in my car in the parking lot of the cancer center. I had just finished my last radiation treatment, and for the first time in almost a year, I had no more chemotherapy or radiation treatments to go to. I was done. And I was lost.

I had to quit my job as a stylist in a busy salon when I got sick, and going back to work in a salon was out of the question. After having lost a lung, I no longer had the stamina to stand behind the chair for 8 hours a day, nor did I want to breathe in all the chemicals.

I now faced a future of uncertainty. I was in limbo, not really recovered enough to do anything, as I was still suffering debilitating side effects from the radiation. Slowly but surely, my body began to recover. I got stronger. By the following spring, I felt almost normal...well, the new normal.

Finding Community

I was still going to Boston every three months for checkups. During those checkups, Dr. Sugarbaker would have me meet and speak with newly-diagnosed patients. It was something that came naturally to me, and something I really enjoyed. I could connect with these patients in a way only another patient could understand. I lived it; I had been through what they were going through. It gave them comfort to see someone on the other side.

Around the fourth year after my diagnosis, I attended a conference put on by The Mesothelioma Applied Research Foundation. It was then that I discovered that there was a community of survivors, patients and caregivers that supported one another. I found my tribe! Because it is so rare, mesothelioma is incredibly isolating. To be with 100 other people who not only understood, but were living with a mesothelioma diagnosis, was incredibly empowering.

Finding A Voice

It was at this conference that I met a powerhouse of a woman named Linda Reinstein, cofounder of the Asbestos Disease Awareness Organization. She told me about the loss of her husband to mesothelioma, and her passion for advocating for a ban on asbestos. We clicked immediately and a friendship was born. I always say that Linda gave me my voice. She asked me to speak at her upcoming conference and I was happy to do so.

After that, the spark was officially a fire. I had a story to tell that could help people. I was fortunate enough to be able to share my story with a couple of different news outlets, including Reuters, AOL, and Huffington Post — all because of my passion for helping people.

I didn’t set out to be a blogger or a speaker; it sort of happened to me. I was approached by the Mesothelioma Cancer Alliance who invited me to partner with them so we could reach more people and help the newly-diagnosed find their way during that incredibly scary and uncertain time. It made my heart happy to know I could help people. I take every opportunity I can to meet with new patients and their families and be a beacon of hope for them, and this was a great way to do that for people nationwide.

This new purpose in my life was planted out of the desire to make a difference after my diagnosis. I’ve also been using my voice in different ways. In Washington DC, I advocate to change laws concerning asbestos, and reach out to online communities to bring a new awareness to this rare cancer that can and does strike anyone, no matter the age or background. Awareness is the start, and making change happens after that.

There is a song that goes, “Sometimes darkness can show you the light” — and I feel that is what happened with me. My family took something that devastated our lives and turned it into a mission of hope.

My ultimate hope is that no matter what you face, that you don’t let it define you and make you a victim. It is hard to see the light while you are in the midst of the darkness, but the light does come. Sometimes you need to look for it, and sometimes it finds you.

I hope to continue to make a difference in people’s lives in the time that I’ve been given. It’s my way of giving back after all that has happened, and it feels good to have a purpose again.