I can’t speak for you, but I know that I get so focused on Lyme disease that I forget about the millions of other people who suffer from unknown, poorly understood or misunderstood diseases – some of them very different but the pain and suffering is the same.
I am glad Heather agreed to share her story with us and hope that there are more of you out there who will have the corage to share your story. No judgement here – just love and support. Heather writes…
The phrase “it takes a village” became famous in the 1990s. It was true then and is still true now when people talk about people having children, especially for the first time. After some trying times I came to really see that this saying true. I had my daughter on August 4th, 2005. The pregnancy itself had no issues, unless you count the emergency C-section. At this point our “village” was definitely there with us in full force, including my husband, parents, and tons of friends who welcomed Lily to the world. Everything was perfect, but that was about to change quickly.
I soon started working full-time again, but things just didn’t seem right. The doctor told me after I had my daughter that I would be tired and lack energy, but something else was wrong. I sucked it up and went to my doctor. After being tested for numerous things we found the problem.
Just under four months after Lily was born, I was diagnosed with mesothelioma cancer. This cancer that affects the lining of the lung is caused almost exclusively by asbestos exposure. The numerous symptoms I thought were related to pregnancy were actually from a cancer that had started developing while I was a child.
The first thing I thought about when I found out that I only had 15 months to live was that my husband and daughter would have to live without me and that Lily would have no mother. My husband and I decided that I would undergo the most drastic measures so that I would have the best chances of a full recovery. We flew to Boston to visit one of the best mesothelioma doctors in the country. My initial treatment for mesothelioma was called an extrapleural pneumenectomy, which entailed removing one of my lungs and all of the surrounding tissue. After 18 days in the hospital recovering from the removal of my left lung, I recovered at home for two more before beginning chemo and radiation therapy.
This was a really difficult time and our family and friends. Our village was what kept us from falling apart. It’s strange how things work out when things aren’t going well. Unexpected people came out of nowhere to provide amazing support, but those that you thought you could count on were nowhere to be found. It’s like my cancer was a filter that let me know who my real friends really were.
While I was getting treatment in Boston, my wonderful parents took care of Lily. They did more than babysit, they actually started to raise her, but not without a village of course. I used to babysit other children in the neighborhood and these girls, now grown, babysat Lily when my parents had to work. We also developed a support system of people with cancer in Boston that really helped us with their support and love.
I had to live vicariously through phone calls from my parents and pictures I saw through grainy photos while I was getting treatment in Boston. My daughter was slowly learning to eat real food and crawl at my parent’s in South Dakota. I will never get those days back, but Lily is so close to them because of it and this is incredibly important to me, no matter how long it is between visits.
Life is short and we must embrace every single day. Cancer can easily lead to depression and ruin your life, but it is important to recognize the good while dealing with the bad as best you can. I have learned a lot from my mesothelioma, but I have come out of the experience stronger than ever.
Heather Von St James is a 43-year-old wife and mother. Upon her diagnosis of mesothelioma, she vowed to be a source of hope for other patients who found themselves with the same diagnosis. Now, over 6 years later, her story has been helping people all over the globe. She continues her advocacy and awareness work by blogging, speaking and sharing her message of hope and healing with others. Check out her story at the Mesothelioma Cancer Alliance Blog.