Tuesday, February 24, 2015

LungLeavin' Day: Throw your fears to the fire - "With hope the odds don't matter!"



It’s called LungLeavin’ Day, a moniker Von St. James’ husband and sister invented to help quell her fears. The surgery, on Feb. 2, 2006, took her left lung, the lining around her heart, half her diaphragm, her sixth rib and a few lymph nodes. Twelve weeks of chemo followed, Pat Pheifer wrote in a recent article in the StarTribune covering the 9th annual LungLeavin' Day party at Heather Von St. James' house where more than 100 people share food and drink, support and laughter.

The purpose of this holiday is to encourage others to face their fears. Each year, family and friends gather around a fire in their backyard, write their biggest fears on a plate and smash them into the fire. They celebrate for those who are no longer with them, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, they celebrate life! Visit Heather's LungLeavin' Day interactive page that tells the full story of this remarkable tradition.

When I worked as a social worker at the VA, I had several veterans who were diagnosed with mesothelioma, a deadly form of lung cancer caused by asbestos exposure. I worked with my contacts in the Service Organizations and the VA Regional Office Benefits to expedite their claims to at least provide financial support to my veterans and their families and to ensure that their spouses would be entitled to compensation after their death. It would have been wonderful to connect them with Heather, her vibrant spirit and message of hope.

As a side bar and an amazing coincidence, one of my veterans, Rear Admiral Wendell N. Johnson (Retired) had the same surgeon as Heather, Dr. Sugarbaker at the Brigham and Women's Hospital decades before for the Admiral's life saving extensive surgery for cancer secondary to Agent Orange Exposure. The Admiral was given 6 months to live in the 1980's. He died in 2006.

Three and a half months after giving birth to her daughter, on 11/21/2005, Heather was diagnosed with mesothelioma, a cancer diagnosis that at best predicts a life expectancy of 15 months. Mesothelioma is also known as asbestos cancer and is highly unusual in a young person only 36 years old. When Heather was a little girl, she wore her father's coat that was covered in asbestos from his construction job. On 2/2/2006, she had her surgery.

"We operate from a place of hope and living in the moment," Heather says in this video that shares her journey and her message of hope and inspiration:


Here are photos from this year's LungLeavin' Day celebration that Heather shared on her Facebook page:


Heather also sold these items that raised over $6000 for research and asbestos education:


I know the fear-the terror that comes with a life altering diagnosis. In December 2006, I was given the diagnosis of post polio syndrome, a progressive neuromuscular disease that led me to leave my award winning career as a VA social worker and "heal my life." At the time I was told the best we could hope for was to stabilize the symptoms where they were but to be prepared to spend the rest of my life in a wheelchair, possibly needing a C-PAP machine to sleep at night to improve oxygenation and if my swallowing did not improve, considering a semi soft diet and being at risk for aspiration pneumonia. But I threw my fears to the fire and took a leap of faith refocusing my life on healing my mind, body and Spirit and leaving my patients and my team at the VA in the capable hands of another social worker. As Heather says, "with hope, the odds don't matter."

What fears to do you need to throw to the fire?

Please share Heather's miraculous story and help her raise awareness of mesothelioma. From Pheifer's StarTribune article, "Von St. James, 46, is one of the rare few to have survived nine years after a mesothelioma diagnosis. About 3,000 people across the country receive a mesothelioma diagnosis each year. That number was expected to fall, since asbestos has been banned for years, but instead it’s increasing, Sugarbaker said. The disease can have as much as a 20- to 35-year latency period."

To learn more visit Mesothelioma Cancer Alliance

Journey well!

"Journey Well" and all of my inspirational books are available on Amazon.

"Journey Well" is a book about resilience, strength, courage and how we are able to journey well no matter what conditions life hands to us. I profile the people who are Boston Stronger and share how 4/15/13 was a wake up call to me to return to my healing path from contracting paralytic polio at age 5 and 9 years of domestic violence as a child and adolescent.



50% of all book proceeds are donated to AccesSportAmerica where people of all ages and abilities achieve higher function and fitness through high challenge sports and training.




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