February 21, 2013

Heather Von St. James | For my baby

Heather von St. James reached out to me on the recommendation of Catherine Arveseth. Heather’s story beautifully illustrates that the best dreams bind us to those we love.

When my baby was just 3 1/2 months old, I was diagnosed with malignant pleural mesothelioma, a disease almost always associated with asbestos exposure. I had been exposed as a young child through my father’s work clothes; they call it second hand exposure. I used to wear his dusty coat to go outside and feed our rabbits, or get the mail. I loved his coat…it was big, warm and like wearing a hug.  But unbeknownst to us, it was covered in deadly asbestos fibers which I inhaled, and 30 years later, I was very sick because of it.

Mesothelioma has a dismally low survival rate, most people don’t live past 18 months.  Of those that do, only 2% make it past 5 years.

But I wanted to be here to raise my daughter.

My husband and I decided we were going to throw everything we could at this cancer — pull out all the stops.  This involved making the choice to go to Boston, 1800 miles from my home in suburban Minneapolis, MN to undergo major surgery (extra pleural pneumonectomy) to remove my left lung. And being apart from Lily, my baby girl, while I recovered.

It also meant that I couldn’t let myself think what if or why me? I just knew I had to get through it. I had no other choice but to do what seemed impossible: raise our baby while recovering from surgery, while having chemo, and radiation.  I had to ask for help from friends, family, whoever was willing, to get through.  I gave up my career that I loved, so I could heal.  I let go of my 5 yr  and 10 yr plans.  My plan was to live in and love the moment.  To stop stressing about something over which I have no control.

Lily’s first year of life was a blur for me, but I was here for her.

Now, I am trying to build awareness for a disease that most people have never heard of, to help others believe they too can be hear for their loved ones.  We not only honor the anniversary of my lung being removed, we celebrate it! We named the day Lungleavin Day, and celebrate with dozens of friends and family. We face our fears by writing them on a plate, and smashing the plate in a giant bonfire in my backyard. Our tradition has become something many people look forward to as a cleansing. Last year, we started to use this celebration as an occasion to give back. We started a fundraising campaign around Lungleavin Day, to promote Mesothelioma awareness and research. This year, in our 7th year we raised over $6000.

I didn’t know I had it in me to survive.  I just knew that it had to be done.  I have a little girl who needs her mommy to raise her, and that alone was reason to make it through.

What have you survived that you didn’t think you could?
Did this happen in part because of your love for someone?
How has this trauma influenced and even helped you achieve subsequent dreams?

***

Heather Von St. James is a mesothelioma survivor and a guest blogger for the Mesothelioma Cancer Alliance. Her story is one of hope and inspiration. She continues her advocacy and awareness work by blogging, speaking and sharing her message of hope and healing with others.

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