Lung Leavin’ Day {Guest Post} 1

Lung Leavin Day

I am proud and pleased to introduce you to Heather, a lovely woman that reached out and wanted to share her story with cancer and how she celebrates her victory every single year.  Cancer is an awful disease and it touches so many lives, so we need to educate and bring more awareness to the topic.  So without further ado, please welcome Heather.

Lung Leavin Day

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My name is Heather Von St. James, and I am an 11-year mesothelioma cancer survivor. This is my story.

On August 5, 2006, I gave birth to our daughter Lily.  Soon after, my symptoms began.  I started losing an extreme amount of weight (I had also seen minimal weight gain during my pregnancy). I was severely exhausted and I had a nagging fever that lasted a few hours every night. I was weary right down to my bones.

Then the inevitable happened. I felt like something was sitting on my chest.  I was having trouble breathing and would get out of breath after almost anything.  This, along with many of what I later learned were my symptoms, was blamed on postpartum.  We had no clue that they could be caused by something so much worse – until one day I was doing some chores around the house. I got so exhausted that I passed out on the couch.  At that moment, I knew something very serious was going on.

On November 21, 2006, I was diagnosed with the rare cancer: malignant pleural mesothelioma.  This cancer is primarily found in a person’s lungs or abdomen, and is caused by exposure to asbestos. It is a scary and dangerous cancer because it has a very long latency period, which means that you could be exposed and not even realize it until years later.  

Lung Leavin Day

I was unknowingly exposed as a little kid. My dad worked in construction and was exposed to asbestos through the drywall sanding and clean-up he performed on the job. He also did a lot of demolition in environments that were ridden with asbestos insulation. Back then, though, we didn’t know enough to worry about it. I used to wear his dust-covered jacket to do my outside chores. I would grab his coat to feed our rabbits, rake leaves, or even just grab the mail. His coat was so warm and was always hanging right there on the doorknob in our entryway.  None of us had any idea that the dust that covered his clothes and car could be so harmful.

Now, just 31/2 months after giving birth to my baby girl, my doctor was telling me there was a chance I wouldn’t be around to see her grow up.  If I did absolutely nothing, I’d be left with just 15 months to live. Thankfully, he came prepared with options for us. I could begin chemo and radiation, which should stop the progress of the cancer, and maybe give me five years.  Or I could try an experimental surgery, performed by the best pleural mesothelioma surgeon in the world, Dr. David Sugarbaker, located, at  the time,  in Boston at Brigham and Women’s Hospital. Assuming I was a candidate, I would undergo a life changing procedure that would consist of removing my left lung.  Before we even had time to weigh the options, my husband said “Get us to Boston.”  This was my shot at more than 15 measly months. As of 2014, Dr. Sugarbaker is now located at the Baylor College of Medicine in Houston, Texas.

This moment was the first I can remember when my fear truly set in.  My thoughts began to be consumed with “what ifs”.  What if Lily grew up without a mother?  What if we can’t afford our home because of my medical bills?  What if I can’t go back to my career?  Everything my family and I had worked so hard to build seemed to be slipping right away.

Nothing but uncertainty follows a cancer diagnosis.  It’s almost as if you are stepping right into the unknown.  The unknown was the root of all of my fears.  When I look back onto the fears that kept my mind racing back then I often laugh to myself.  They seem silly now that I have overcome so much.  Now in my 11th year of survivorship and I am amazed at how much I’ve learned.

Now, I always say that fear is an acronym for False Evidence Appearing Real.  When you really examine fear, that is exactly what it is. It eats away at you little by little and threatens your rationality.  I think there is only beautiful thing about fear and that is your ability to face it.  When you face your fears that’s when you learn how powerful you can become despite your situation.

I was hell bent on making sure that all of my fears were only a part of my journey, never something that would define it.  This journey has taught me more than I could have imagined.  I learned that I had a beautiful support system in my husband, friends and family.  Cameron supported me every step of the way.  My family and friends held me close throughout the darkest time of my life.

It wasn’t all sunshine and roses.  I lost a lot of friends along the way.  Illnesses have a funny way of doing that.  They expose the ones in your life that are truly there for you.  During the early stages of my survivorship, my relationships suffered.  I required more from people in my circle than ever before because I had little to offer as I healed miles away.  Many people in my life presented sides of themselves that were absolutely amazing.  My family was showered with love and support by so many.  I focused on those people.  I moved on without a lot of people and that is okay.  I have all the people I need with me in my journey and I am fortunate enough to be impacted by new faces almost every day!

These people and the mentality we have all taken on, have helped guide me throughout my survivorship.  Every year the month of February marks an extremely pivotal time for me.  11 years ago, shortly after my diagnosis Dr. Sugarbaker removed my left lung.  Ten years ago my sister and my husband decided to turn the anniversary of the day my lung was removed into a celebration that would take place each year in early February.  My sister coined the day as “Lung Leavin’ Day” and it’s stuck ever since!  This celebration has grown from just us shivering around a bonfire to a huge gathering of people in person and online that supports several different foundations and organizations in the mesothelioma community and in their respective lives.

Every year we all gather together just as we have the past ten Lung Leavin’ Days and we write our biggest fears on plates with sharpies and smash them into the fire.  We created this day to symbolize the most pivotal times in my battle with mesothelioma.  The day I chose to conquer my fears and dive right into the unknown.  We have chose to continue involving others in Lung Leavin’ Day because we realized how therapeutic it could be to anyone facing their own fears.  Many people that have joined my celebration have gained their own strength to face their fears.

I have dedicated my life to mesothelioma advocacy so it didn’t take us long to start using Lung Leavin’ Day to benefit the Meso community.  When more and more people started being involved in this celebration we decided it was time to start giving back to the mesothelioma community that has become so important to us.  Since then, it has become so much more than me and my family surrounding that campfire and scribbling on plates.  It’s a way to battle the unknown, smash our fears, and show this cancer that we will never give up.

Lung Leavin Day

[Disclaimer:  This post was not sponsored, nor did I receive any compensation for such.  This post is strictly to raise advocate and raise awareness.]

 

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  • Oh, my goodness… that is SO scary and crazy that something like wearing a coat as a kid could have such a lasting and devastating impact! Thank god the author is now fully recovered, and that she spends so much time doing advocacy work! <3 Thanks for sharing, Linds!