On November 21st, 2005, at 1:30 p.m, I was diagnosed with mesothelioma cancer, or malignant pleural mesothelioma.
My doctor told me it was “cancer”, but all I could hear was that I might not be able to raise my brand new baby girl. My daughter was only 3½ months old and now I may not live to see her second birthday. My doctor had tears in his eyes when he explained my diagnosis.
If I didn’t pursue any kind of treatment, I had 15 months to live. Thankfully, he was armed with a list of different options for us.
I could do chemotherapy and radiation, which could stop the mesothelioma cancer from spreading and maybe give me five years at most. Assuming I was eligible, my alternative option was to try an experimental surgery that would remove the lung and the lining where the cancer was growing.
Should I choose the second option, it would need to be performed by one of the best pleural mesothelioma surgeons in the world, Dr. David Sugarbaker, at that time, located in Boston at Brigham and Women’s Hospital. Without any hesitation, my husband said, “Get us to Boston.”
Fear began to overwhelm me.
Not only fear for my health but fear about my family. Would Lily grow up without a mother? Would we lose our home because of medical bills? What about the career I built, would it be waiting for me after I beat this thing? Everything we had worked so hard for seemed to be slipping away without any notice.
The fear of the unknown was the root of my anguish, and there is so much unknown with a cancer diagnosis. Reflecting on those fears as I enter my 11th year of mesothelioma cancer survivorship seems silly, but at the time, they were almost all I had on my mind. I like to think that I did pretty well at not letting them overwhelm me.
Eleven years later, I am proud to say that I can look back on my journey to survivorship and can confidently say that I’ve learned a lot about my fears. Now, I believe that fear is an acronym for False Evidence Appearing Real. If you take a long hard look at fear, that is exactly what it is. It builds up inside you and consumes your rationality. When it’s time to face your fears – that’s when you learn how strong you can be.
Facing your fears reveals your strength because sometimes that’s all you can be: strong.
I was fortunate because I wasn’t alone in my fight. I was supported every step of the way by my husband. My family and friends held me close throughout my entire journey. I encourage you to face your fears. I still have them, and will the rest of my life. I fear that my cancer will come back, I fear that my husband will get sick, I fear that my daughter will get sick… so many different fears. If I were to let them take over, I would never be able to breathe. So I don’t let them, and I exhale.
In choosing to face my fears, I’ve officially outlived not only my original prognosis but also my absolute “best case scenario prognosis.” Shortly after my diagnosis, Dr. Sugarbaker removed my left lung on February 2nd, 2006. This milestone in my fight against mesothelioma cancer birthed my favorite “holiday.”
My sister and my husband dreamed up this celebration that would take place on the anniversary of my surgery. My sister dubbed it “Lung Leavin’ Day” and it’s stuck with ever since. The first year it was just us, our plates and the freezing weather, huddled around a tiny bonfire. But we didn’t care; we wrote our fears in sharpie on plates and then smashed those plates into the fire.
Lung Leavin’ Day
This day that we now celebrate every year marked an extremely pivotal moment for me in my journey. I had no choice but to face my fears.
Like your own thoughts, unless expressed, fears are extremely personal. Everyone has something to face and conquer in their own capacity. To face whatever that may be, then symbolically smash it, and see your fears in pieces in a fire is cathartic. Many people that have chosen to join my celebration have gained strength in their own capacity to face those fears.
After a couple years of celebrating and smashing plates, we decided this was a perfect opportunity to give back to the two organizations that join me in my fight for mesothelioma cancer victims: The Asbestos Disease Awareness Organization and the Mesothelioma Applied Research Foundation.
I have dedicated my life to mesothelioma cancer advocacy, so it has been an absolute privilege to use what started as our little party to benefit the Meso community. We’ve raised over $30,000 for the Meso organizations to date. This celebration has become so much more than me and my family surrounding that bonfire. It’s about helping people express their fears and heal while doing so.
My 11th Lung Leavin’ Day, just like the 10 that came before, started off with many different worries and fears. 11 years ago, I was being taken into surgery and scared out of my mind. I can’t believe that was 11 years ago! Whether I can believe it or not, it’s here – I have officially outlived what I thought was my absolute best-case scenario.
So, I smashed my fears with everyone that rallied around. We all smashed our fears and left them where they belong, in pieces the fire. I am overwhelmingly blessed to have been able to write my fears down and smash them with so much support this year.
Each year, I look forward to another fun celebration with friends and family and helping people smash those fears. That, after all, is what the party is all about. We are all looking to bring together our good friends, celebrate life, and second chances, and be thankful for today.
ABOUT THE AUTHOR
Heather Von St. James is an 11-year survivor of the rare cancer, malignant pleural mesothelioma. She has dedicated her life to mesothelioma advocacy and is a vocal force banning asbestos in the United States. Heather also serves as a blogger for the Mesothelioma.com.