When I was diagnosed with mesothelioma, I felt more isolated than I ever had in my life.. I was a mere 36 years young and told I had an incredibly rare cancer that, in most cases, was diagnosed in much older men. I felt utterly alone and defeated.
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Posts about "mesothelioma"
I always credit Linda Reinstein from the Asbestos Disease Awareness Organization (ADAO) with giving me my voice. Four years ago, it was Linda who started me on this crazy journey of speaking and sharing my story with others when she approached me to speak at her conference.
Every year, 3000 people are diagnosed with mesothelioma.
In 2005, I was one of them.
I had never worked with asbestos, but my father did, and secondhand exposure as a child was enough to make me sick decades later. I was lucky, able to make a miraculous recovery through surgery. But I experienced for myself the fear, pain and suffering this disease can cause, and I believe I’ve found my calling fighting for victims of mesothelioma and other asbestos diseases.
Eight years. I still find it hard to believe sometimes.
That first year—the one-year mark of Lung Leavin’ Day—it was just Cams and me, outside by a little bonfire on a freezing cold night, writing our fears on a plate. Mine had everything to do with cancer, since surgery was so fresh in my mind. I didn’t read his plate; they’re his fears to smash, not mine. When we were finished writing we both took a breath and shattered our plates in the flames. With that, a tradition was born.
November brings out the best in many people. The spirit of Thanksgiving is everywhere; on social media, friends are posting 30 days of thankfulness. I love this idea and have participated in it many times since I have much to be thankful for. But to me November is not a month I look forward to; in fact, I pretty much dread it every year since 2005. November means winter is starting, the days are shorter, it’s colder, it’s grey and dreary, and if we don’t have snow, we have rain and fog. My yard is all soggy, brown and depressing-- quite a change from the colorful summer and fall with all my many flowers blooming.
September happens to be one of my favorite times of the year-- not only because the weather is usually picture perfect and the leaves start turning, but every year my mom and I go to New York City for Mesothelioma Awareness Day. This was our 3rd trip and each year we love it more and more. It’s becoming a tradition for my mom and I to arrive a day early, enjoy a nice dinner and get ready for the bright and early wake up time of 4:00 am to get to the plaza of the Today Show by 5:30. We get there so early to secure a good place around the barriers to be seen by the hosts. NYC at 5 in the morning is amazing, it’s actually quiet with the occasional roar of a truck engine in the distance. By the time we are allowed onto the plaza for the taping of the show, there is a line down the block of people wanting to get noticed. All of us who were there for Mesothelioma Awareness Day were dressed in our bright yellow “Cure Meso” t-shirts and grouped together so we would be noticed when the hosts of the show came around. Strength in numbers!
Dying to be Heard is a statement that perfectly illustrates what is happening to mesothelioma victims.
Each year, 3,000 new people are diagnosed with mesothelioma cancer. Of those 3,000 victims, only a small percentage will live to celebrate 5 years of survival. Most live a mere 10 months past diagnosis and, during those 10 arduous months, they are dying to have their voices heard—by asbestos companies, medical research organizations, potential victims, and those who don’t know about this disease. Mesothelioma is a completely preventable disease, yet asbestos is still not banned in the US.
My daughter Lily just celebrated her 8th birthday this month. Eight years old! At times I find it hard to believe she is already 8. Other times it seems like she should be older because she is so wise for her age. Of course we had a HUGE birthday party to celebrate, because I like to make a big deal about birthdays. I have since her first birthday, quite simply because I didn’t know if would be around to see her turn 1, let alone 8!
The thing about cancer that no one tells you is that you are thrust into a world not only of endless doctor appointments, countless labs, CT scans, being poked literally hundreds of times until you're bruised up and down your arms, but also into a world of some of the most amazing, resilient and inspiring people you will ever know. There is also the really, really hard part very few people talk about-- the fact that a lot of those amazing people don't make it. I’ve had to say good-bye to more people in the last 7 years than I ever imagined.
When I was in the hospital in Boston recovering from my extrapleural pneumonectomy surgery, I remember looking at Cameron, my husband, and saying to him, “when we get through all of this, we are getting a motorcycle.” I think he started dreaming about the perfect bike that night.
Four years ago, Heather went to her first Mesothelioma Applied Research Foundation (Meso Foundation) symposium. That first symposium left a lasting impression and changed her life. The opportunity to meet with other mesothelioma warriors, their families, caregivers, and medical experts in mesothelioma treatment and research had a positive impact. It was the opportunity to meet with people who know what a mesothelioma diagnosis means. These new friends quickly became family.
This scripture was on a card sent to me by a friend shortly after he found out I had cancer. When I opened the card, and read those words, I sobbed. I sobbed because it was EXACTLY what I needed to read and needed to know, that I would be ok. It was those words that got me through some very scary times in these last 7 years. Those words were, and still are, my lifeline.
The 7th Annual Lungleavin Day is all but a memory now. The remnants of a great night are all around; the shards of plates around the cold coals of the extinguished fire, the ice lanterns are nothing more than globes of ice, the dining room table still has the serving dishes used for the night sitting on it, all cleaned and waiting to be put in the storage bin until next year. The silent auction donations are still in their places and phone calls have been made to all the winners. This week will be spent delivering them and picking up the donations so generously made for mesothelioma research. What can't be seen is the gratitude that my husband, daughter and I have in our hearts for all of the love and support that so many have given us.
“Courage is resistance to fear, mastery of fear, not absence of fear.”-Mark Twain
I hear it often from people, how brave I am and how much courage I have. Sometimes I just have to laugh, because, going through what I’ve been through with my mesothelioma battle, I don’t feel very brave. At times, the fear was so overwhelming, all I could do was cry out to God to help me. I would love to say that through the last 7 years, I’ve learned to conquer my fears. After all, Lungleavin Day, our celebration of the anniversary of my extrapleural pneumonectomy surgery, is all about overcoming fears. But I still have my moments, more often than I would like to admit. I have the usual fears creep in, my “scanxiety” I’ve blogged about before, little pangs of fear before I fly, but the biggest fear I struggle with is the fear of something happening to my daughter. This is something that has plagued me since she was born.
I love social media! Through Facebook, Twitter, and Instagram, I've been able to communicate with literally hundreds of people throughout the world. I especially love it during the holidays, because it gives me a glimpse into the traditions and lives of my new friends. Traditions are the rituals we all do year after year and carry on generation after generation without question. We just do them "because it's always been this way".
Scanxiety: Noun [skan-zi-etee]: Uneasiness waiting for ones scans after cancer treatment. ie: I get Scanxiety the week or so before I go to Boston for my check ups.
I've said it before, my mesothelioma cancer was all at once the worst thing and best thing that has ever happened to me. Getting the diagnoses when my baby was only 3 1/2 months old was certainly not in our plans. I planned on being a working mom, but this cancer changed all that. I get to be a stay at home mom, I get volunteer with my daughter’s school and help out when I can. I actually enjoy it far more than I thought I would. When I worked in the salon, I used to joke that they would have to pry the shears out of my cold, dead hand before I ever quit, but I guess someone had other plans for me. Some days I do miss going to work, but all I have to do is sit and read some of the comments on my blog or Facebook page to know that I am doing the right thing-- I'm making a real difference in people's lives.
Lily started 2nd grade this year-- 2nd grade! She’s a bright and vibrant 7 year old with a stubborn streak a mile long, and sweetness that will melt even the most bitter of hearts. I love going to ‘meet the teacher’ night and seeing how excited she gets when she walks through those doors at school. So confident and filled with hope and wonder-- she loves her school.
Being a parent, my biggest fear is my child getting sick. I think that is a constant fear, regardless of how old your child is. So when I was diagnosed with mesothelioma, my parents had to face that fear. I was their child, their baby, and now I was fighting for my life. Then, with me being a new mom, they had to take over my role as a parent while I was in Boston for my surgery. They were much more than Grandma and Grandpa—they were, in every sense of the word, parents to her in our absence.
Community—a sense of community and renewed hope. That is what the overwhelming feeling was at the Mesothelioma Applied Research Foundation's (MARF) annual symposium on malignant mesothelioma. The symposium took place from Wednesday July 11th to Friday July 13th in Washington DC—no where else can you have, all in one room, world-renowned doctors, other medical staff, lawyers, patients, their loved ones and caregivers, as well as those who have lost members of their family to the disease. Everyone came together for a single cause, to help find a cure for mesothelioma. What a very powerful testament to what the MARF is about.