Heather Von St James, 54, Mesothelioma
How would you explain mesothelioma to a child?
Mesothelioma is an illness caused by a toxin/fiber used long ago in buildings and certain powders that people used. It is a mineral called asbestos. People breathe it in, or swallow the fibers and many years later can develop this rare cancer that shows up on the lining of people's organs, like lungs, belly, and heart. It is very rare for people to develop it.
What would you want the world to know about mesothelioma?
Mesothelioma is a rare cancer affecting less than 3000 people a year. It is almost exclusively caused by asbestos exposure and can take anywhere from 10- 50 years to develop after initial toxin exposure. Asbestos fibers are incredibly small and are airborne easily when disrupted. It is considered an incurable and terminal cancer. Surgery, immunotherapy, and tri-modality treatments are doing a lot to help people with mesothelioma live longer lives. The average life expectancy is 18-24 months after diagnosis. Asbestos, the fiber that causes mesothelioma, is not yet banned in the United States and still used in certain commercial and industrial settings.
What does it feel like to live with mesothelioma and one lung?
At this point in my life, it's just normal... but when I really sit and think about what my body has been through and that I do as well as I am doing? I am rather impressed with what I and many others have accomplished. I had my entire left lung removed and all of the surrounding tissue, the pleura, where the cancer was located, the left half of my diaphragm, the lining of my heart, and a rib all resected. I now have surgical goretex where my diaphragm and pericardium were. My right lung has expanded to compensate for the loss of the other one. Most days I feel quite normal and don't think much, but there are days when I want to do something, go hiking, or work in the yard doing things that tire me out is when I remember that I only have one lung. I deal with chronic pain due to surgery and radiation, but keep it controlled so I have quality of life. I've survived over 17 years with this and I have no plans on leaving this earth any time soon! The hard part is making friends with other patients and then losing them to this terrible cancer. I've lost so very many friends over the last 17 years that my heart breaks when I think about it. But I'm still out there, advocating for new patients and helping bring much-needed awareness and funding to this rare disease.
What brings you joy?
The simple things in life. Seeing my 17-year-old child thrive. My dogs, my birds, nature. I love being outside. I love working in the garden and making things beautiful. And just simply being here... that brings me great joy.