Heather Von St. James is a fighter, a survivor, and a voice of encouragement to everyone who has faced the devastating diagnosis of cancer. She also has a great sense of humor and offers plenty of sage advice for the rest of us. I am honored to share her story here.
Most stories we have shared on this blog have come from individuals who took action to make an intentional change. But in your case, a life-altering transformation came about completely out of your control. Can you share with our readers a bit about your diagnosis and how it changed your life?
My husband and I decided after 6 years of marriage that it was time to start a family. Lily was born, and upon release from the hospital, the doctor told me I was a little anemic, and I should keep an eye on that. Little did we know, that was the first of many puzzling symptoms that would lead to my diagnosis of malignant pleural mesothelioma when Lily was just 3 1/2 months old.
To say I was devastated would be an understatement. We were just beginning to get the hang of this parenting thing and now our world was crashing down around us. At the time of my diagnosis I was 36 years old, and the Mayo Clinic had only heard of one other person my age with the diagnosis. Mesothelioma is a rare cancer of the linings of the organs, mine happened to be in the lining of my lung. Most cases are caused by asbestos exposure. The fact that I had never personally worked with asbestos made it even more rare. It was later determined that my exposure to asbestos came through my father’s work clothes. My dad was a construction worker, and the drywall joint compound he used contained asbestos.
Upon my diagnosis, I was given just 15 months to live unless I sought out radical treatments. That treatment happen to be in Boston, some 1400 miles away from my home in Minnesota. It was an involved procedure that consisted of removing organs and ribs to essentially "wash" the inside of my body with heated chemicals. The thought of traveling across the country to a strange city, where we knew no one, away from our support system and our baby was daunting, but we knew it was a necessary sacrifice to potentially save my life.
I had my surgery, spent 18 days in the hospital, and after a month in Boston, I was able to return to my parents home to recover. I stayed with them for two months until I was well enough to care for Lily and move back to our home. Shortly after, I started my first of 4 sessions of chemotherapy, followed by 30 sessions of radiation Almost 1 year to the date from my diagnosis, I finished treatment, and I’m glad to say I’ve been told I have no evidence of disease since.
The decision to pursue surgery is a daunting - especially with a brand new baby counting on you. What gave you the confidence you needed to move forward?
All I had to do was look at my daughter and I knew I had to try it. I had met with the surgeon and had faith in him. I had nothing to lose, and everything to gain.
Your story is an inspiration to so many. Who or what inspires you today?
I have had the good fortune to meet so many amazing people. I can think of a couple of other cancer survivors who inspire me. My friend Bonnie... She is a 15 year mesothelioma survivor, but has also battled 3 other cancers! She remains positive, real and is just one of my favorite people in the world. Another is a young cancer survivor named Alex. Alex was diagnosed with brain cancer at age 5. He has had 3 recurrences, but is currently in remission. He is in his early 20’s and has battled cancer his WHOLE life. He is my inspiration to never give up.
What are you dreaming about now?
I would love to do more public speaking.. I love to inspire people and awakn in them the desire to do more. TedX is a dream… to be a TedX speaker… perhaps when I get my book done. :)
What is the best piece of advice you have received?
Never fry bacon naked. OH! You mean because of my illness... Hmmm… That this is temporary and I will get through it. The key word being THROUGH. It is a necessary process to go through to come out the other side.
What do you know now that you wish you would have known at the beginning of your journey?
That people you thought were your friends will be nowhere to be found when things get bad. I guess I had different expectations of people than what they were capable of. At the same time, people I never thought would help came out of the woodwork, which really made me realize who is important. Those people who help are the ones to keep around.
What encouragement can you offer someone who is forced to make a difficult decision and doesn't know where to start?
Trust your gut. And as far as not knowing where to start, I will offer you the sage advice my mother gives me when I am overwhelmed. “How do you eat an elephant? One bite at a time…” Meaning it looks huge when you approach it as a whole, but you can break it down into more manageable bites. Start with the most urgent and pressing item, and try to prioritize things.
What resources have provided guidance or inspiration for your New Beginning?
My mentor and dear friend Linda Reinstein has been a great source of knowledge and guidance for me. She lost her husband to mesothelioma 9 years ago and started The Asbestos Disease Awareness Organization to educate people on the dangers of asbestos and change public policy as it pertains to asbestos and its use. In my own advocacy work, I just follow my heart. I don't want anyone to feel as alone and isolated as I did when I was diagnosed. I just want to help people.
To learn more about Heather and her inspiring story - or to get involved - visit her website or check out her blog.