Heather Von St. James
She was perfect, all 8 lbs 14 oz. of her. Ten fingers, ten toes, a fuzzy little head and a look on her face that said ‘whoa, what just happened to me?’
Lily was born by emergency C-section at 5 o'clock in the morning on August 4th, 2005. My husband Cameron and I were ecstatic. Even though a C-section was not what we planned, we managed to go with the flow and be flexible. Unbeknownst to us, this was a skill that would serve us well in the not-too-distant future.
My health started to decline the month after I had Lily. Unable to take any additional time off, I went back to my salon job, part-time, just 4 weeks after giving birth. I was so tired, but chalked it up to sleepless nights with a baby who seemed to have her days and nights mixed up combined with the recovery from my C-section, and then my return to work. In October, I went back to working full time which is when my health began going steadily downhill. At this point I was losing 5 to 7 pounds a week, I had no appetite, and it felt like a truck had parked itself on my chest.
I finally called the doctor after I became so exhausted from carrying Lily downstairs from the bedroom to the living room that I had to sit and catch my breath. After doing blood work and a chest x-ray the doctors found my left lung had a pleural effusion, or fluid around it. I was immediately sent to the hospital to have the fluid drained and to find out what was causing it. After my CT scan the doctor told me they had found a mass in the lower left portion of my lung. I asked if it was cancer, to which he replied he wouldn't know until they ran more tests.
Tears ran down my face as I waited for my husband to come pick me up from the hospital. In that panicked moment I couldn't help but think "this isn't supposed to be happening, I have a new baby, I can’t be sick."
The next day I had more tests, including a CT assisted biopsy.
And then we waited.
The Fight to Survive
On November 22nd, at 1:30 pm, we got the news. I had malignant pleural mesothelioma. Cameron and I sat there in shock as the doctor laid out our options, none of which sounded good.If I did nothing, I would live maybe 15 months — which was not an option considering I didn't want my 3 and a half month-old daughter to grow-up without a mother.
Next he outlined a risky but promising surgery that I might be a candidate for. An extrapleural pneumonectomy, a procedure developed by Dr. David Sugarbaker — a surgeon over 1,300 miles away in Boston.
After hearing the news I couldn’t think straight. The only thing on my mind was Lily. I had to be around to raise my baby. I did not want to leave her or let the cancer win. Fortunately however, Cameron didn’t hesitate and without batting an eye, my husband said "Get us to Boston."
Heather in the hospital
Twelve days later, Cameron and I were meeting with Dr. Sugarbaker’s team at Brigham and Women’s Hospital, where shortly after we found out that I was a perfect candidate for Dr. Sugarbaker’s procedure. We set the date for February 2nd, 2006 (which also happened to be Groundhog’s Day).
The next month was spent preparing for surgery back home. I was told I would be in Boston for at least a month after surgery which meant we would miss Lily’s entire 6th month of life. We made arrangements for Lily to go live with my mom and dad while other family members welcomed our pets into their homes. The end of January arrived, my mom flew out to pick-up Lily and on January 30, we arrived at the airport, each of us going our own separate way.
I was wheeled into surgery bright and early on February 2nd, to have my left lung, the pleura where the cancer was, the left half of my diaphragm, and the lining of my heart removed. They also removed my sixth rib to give better access to my chest. My diaphragm and the lining of my heart were then replaced with surgical gore-tex. Next, a heated chemotherapy solution was pumped into my chest and washed around for about an hour and pumped back out. Finally, they closed my chest up and eight hours after surgery, I woke up in recovery.
The Long Road to Recovery
My recovery lasted most of the year. Eighteen days in the hospital became a month in Boston. I spent two months after that in South Dakota with my parents and Lily; as Cameron had to go back to work and I was too weak to care for Lily on my own. When I finally returned home after three months away, I still needed chemo and radiation therapy.Hope is needed during any cancer diagnosis, especially when there aren’t many positive stories about the cancer you are facing. I decided to start sharing my story in the hope that it might help people who find themselves in the same situation as me. I got involved with organizations like the Mesothelioma Applied Research Foundation and the Asbestos Disease Awareness Organization; as well as doing some patient advocacy work, which included talking with newly diagnosed patients as part of my visits back to Boston for biannual checkups.
Cameron, Lily, and Heather
Mesothelioma awareness is something I’m extremely passionate about. I want to let people know that you can live life with one lung and live a good life at that. Through the years, my husband and I have used the anniversary of my surgery, which we call LungLeavin’ Day, as an event to raise money for mesothelioma research which is sorely underfunded. This is our 8th year throwing the party.
I don’t know what the future holds, all I know is that I am going to continue living life to the fullest. I am going to continue to raise awareness and make a difference. I hope that my story inspires others and helps them in their time of need, no matter what that need is.
Heather Von St. James is a rare mesothelioma cancer survivor. Heather was diagnosed with mesothelioma and given 15 months to live just 3 ½ months after giving birth to her daughter, Lily. Today, Heather is an 8-year mesothelioma cancer survivor and continues to dedicate her life to spreading both inspiration and awareness of this preventable disease. You can follow her on Twitter and Facebook or check-out her LungLeavin' Day website.
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