Heather's Blog

CANCER: "YOU HAVE A CANCER CALLED MESOTHELIOMA"

Heather Von St. James - Fueling A Mission When All Hope Seems to Be Lost

“You have a cancer called mesothelioma.” Those are the words I heard on that cold November afternoon 11 years ago.

I sat there trying to process all the emotions running through my head as I hear my husband say, “Mesothelioma? The asbestos cancer? Oh, this is bad.”

I vaguely remember the doctor saying I would only live 15 months if I didn’t do anything. That brought me to the present. Fifteen months? My baby would only be 18 months old. I might not even be alive to see her turn two!

I’m thankful that my doctor and medical team sought out options for me so that I could fight this cancer. Those options took me far from home, and far from my family, but were necessary sacrifices we needed to make in order to fight the cancer that had invaded my body.

I traveled from Minneapolis/St. Paul to Boston to have major surgery to remove my left lung and the lung lining where the cancer was located. They also removed the lining of my heart and the left half of my diaphragm, both of which were replaced by surgical Gore-Tex.

As the treatment process went on, I realized that I probably was not going to be able to return to my job as a salon owner and stylist in a busy salon/day spa. That realization was harder for me to accept than the news that I had cancer. I loved my job, I was passionate about it, and now, I had to sell my portion of the salon, and quit working all together.

After I finished my treatments, almost a year to the date from the onset of my symptoms, I felt completely lost. I didn’t have a job to go back to, and now was a stay-at-home mom. Although I loved being with my Lily, I felt lost, alone, and a little depressed. Now what?

My life was still a whirlwind of checkups and doctors’ appointments to stay on top of things, but instead of dreading the trips back to Boston every three months, I started looking forward to them. It was there that I was able to connect with other patients, talk with them and hopefully inspire them. My surgeon asked me at every appointment to stay and talk with the newly diagnosed patients. A spark was lit.

I met so many wonderful people and through these meetings I learned of a fantastic nonprofit for mesothelioma patients, The Mesothelioma Applied Research Foundation. I had never really looked into nonprofits or support groups because I felt like I had all I needed when I went to Boston every few months. But by my fourth year of survivorship, I was invited to The Mesothelioma Applied Research Foundation’s symposium on malignant mesothelioma. I had no idea how much I needed to go until I was there.

You see, mesothelioma is a very rare cancer – only about 3,000 people in the U.S. are diagnosed every year. Being diagnosed at such an early age (36), far younger than the average patient, was very isolating. But here I was, in a room with literally hundreds of people whose lives had been touched by mesothelioma.

I knew by the end of the day that I wanted to get involved, I wanted to be a part of this wonderful organization that not only supported patients and their families, but raised essential money for research. It was during this conference that I met a powerhouse of a woman named Linda Reinstein, who was a mesothelioma widow herself. She had lost her husband the year after I was diagnosed. While her husband was still alive, she along with a friend Doug Larkin, started the Asbestos Disease Awareness Organization (ADAO) that focuses mainly on legal issues with asbestos and trying to get this toxic substance banned.

Over our hour long lunch, I learned much about asbestos, and the more I learned, the angrier I got. But what could I do? I was just some girl who happen to get the disease, but wanted to make a difference. Well, a fast and fierce friendship was formed with Linda that day, and over the next few months as we got to know each other through the wonder that is social media, she invited me to be a speaker at ADAO’s annual conference. I was thrilled. I always credit Linda with giving me my voice – a voice for the asbestos victims who can no longer talk.

I made it my mission to bring about awareness and to raise money for these two amazing non profits. My vehicle is my annual “Lungleavin Day Celebration.” Every year, on the first Saturday of February, we commemorate the day I lost my lung to cancer. Instead of looking at the day as a sad or awful day, we chose to turn it around as the day I got my life back. We started using the celebration as a fundraiser for these two worthy nonprofits and as a way to give back and impact the community.

See, cancer destroys many things, takes away so much, but in the same respect, it gave me so much more. A passion for awareness, a desire to help others who find themselves with the same diagnosis and feel so alone. I like to serve as a conduit to get them introduced to the mesothelioma community which I am so proud to be a part of.

I’ve since reached outside the meso bubble to get involved with other cancer nonprofits to meet other survivors, as I feel we can all learn so much from one another. Stupid Cancer for young cancer survivors and Imerman Angels, volunteering as a mentor to other mesothelioma and lung patients, which has been incredibly rewarding.

I decided long ago that I was not going to let a diagnosis of mesothelioma dictate my life. I made it my mission to give back, and help out, and without the diagnosis, I would never have found this path. When people ask if I wish I’d never gotten cancer, my honest answer is, no. It made me who I am today, and I’m proud to be that person.

How You Can Get Started
Find a nonprofit or cause that you are passionate about. It doesn’t have to be mesothelioma, or even cancer. If you’re passionate about it, you’re more likely to stick with it, and you will come into contact with a ton of other great people who are just as passionate about it as you are.

How can you personalize your fundraiser so it's not "just another 5K"? Make it unique to you. My friend Mark does a Kayaking event to raise money for the Meso Foundation. It started as a way to raise awareness for mesothelioma that his young daughter was battling. He loves to kayak, and decided to make his love for that, along with his passion for awareness into an annual event that grows every year. This year over 225 kayaks were paddling down the Hudson River. If people are unable to physically attend the event but still want to be a part of it, you should create an online fundraising platform for them to do so. I was able to almost double the amount I raised in 2016 by adding an online option. I used all my social media outlets to promote it and was absolutely thrilled with the results.

Set a reachable goal. Nothing feels better than hitting a goal! On the other hand it's quite discouraging to not hit the goal you set. My advice is to start out small, and you can always raise your goal if you blow it out of the water.

Ask people to “share” your event on their social media pages. Sharing is the best way to boost visibility. Ask a few good friends to share and give people a reason to donate to your cause.

People love photos and videos. Make a short video about your cause. People will feel more connected to you and may be more likely to donate because of that.

Update people about your progress to build momentum! It's so exciting to obtain your goal and thank the world for getting you there!


Heather Von St. James
Heather Von St. James is an 11 year mesothelioma cancer survivor who was given a death sentence of 15 months to live, three short months after her daughter was born. Over the past couple of years she has used this death sentence as a way to make her story heard and help those who are diagnosed with mesothelioma. Heather continues to fight everyday for a ban on asbestos in the United States.

CANCER: A TEEN TURNS TWENTY AND FIGHTS BACK AGAINST CANCER

Hey!!! I am still here!!!

It's been a while since I last blogged. Maybe it's because I had nothing to say. Or, that I had too much to say, but it was always the wrong words, the wrong thoughts.

Emotions have a funny way of ripping through a person. They just tear me apart!

Sometimes, I envy those who feel nothing. Those who do not feel pain, sadness and heartache.... it must be a very peaceful feeling. It’s not me.

The last two months have been brutal for me! I had a relationship end. I found out that heartbreak and cancer are a disgusting cocktail to swallow.

Consequently, it seems that even when I am sick, people will lie to me in fear of hurting me. They fail to realize that the truth will make me feel better. It will really make me feel better to know the “real situation". I do not fear the truth.

The shitty part about being young with cancer is I still want friends to reach out and hang out with me. I know, first hand, how hard it is to respond when someone you love — someone your own age — is diagnosed with cancer. It can freak you out, make you cry, and start to make you think about death. Your friends pull back from you. All of a sudden, your friends are careful with their choice of words when they speak to you. How do you have friendships and romances when the word “cancer" seems to be written on your forehead? What do you do?

Young cancer patients still have break ups, still want to date and still want to be in love. I still want to have kids, eventually. Damn it! But, being young with cancer, you are chained!!! Finding someone and giving them your heart, hoping that when they say, “I am here for you", that they actually mean it.

Obviously, it is a lot to ask of someone, especially when people are young and want to have fun. I want to do all the things that my friends do. I have a dirt bike. I am going out and riding it.  

I know cancer has made me more distant, weary, and untrusting. It has tried to steal the “fun" out of my life. I swear on my soul that is not going to happen. I am going to use all my energy to fight back. I am going to Beat Cancer and I am going to Get "MY FUN" Back!

 

CANCER: WHAT IS NEW 4 THE STRANGER IN THE MIRROR?



March, 2015

Good Morning Sunshine. Let’s start our day!!
You do not know my pain. I stand in front of the mirror over my bathroom sink staring. I have tears streaming down my face. I am begging myself to just hold on. Hold on a little longer. I try to remember how to be strong. I try as hard as I can. Can I be like I used to be. Can I be strong again. God let me be strong. Let me get through this day.
To Be Honest, that is how I start every day. That is my personal cancer journey.

When I first looked at myself without hair, I broke down. I bawled. I screamed at the top of my lungs. I hit the wall. I was totally angry. I spit in the mirror…At that “Stranger in the Mirror” looking back at me. The sight of myself…BALD. I hated myself.

Lately, Chemotherapy is taking its toll. The more I keep doing it. The more I lose my energy. It is getting really difficult to swallow. Cancer totally sucks.

The back of my head has hurt for days. The doctors worked on my skull last Monday. It is so tender. Ugh! My head is driving me bonkers. It hurts like hell. Just where the stitches are. If I find some strength, I will get over it. Damn head. I am trying to think, but I am all dark and what not.

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