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.
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Posts about "mesothelioma diagnosis"
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.
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!
This is the third time I have attended ADAO’s Annual International Asbestos Awareness Conference. I still remember how I instantly felt like family when I attended my first conference in Atlanta, GA in April 2011. I found myself at home with others whose lives had been affected by mesothelioma and asbestos. It was wonderful sharing my experiences with others and hearing their stories as well.
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.
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.
You hear the joking comments “Normalcy is highly overrated” and it is, until something happens to shake your foundation, and everything you have is turned upside down. For some people, it is a divorce, a break up, the loss of a loved one, but for me, it was my cancer diagnosis. I was diagnosed with malignant pleural mesothelioma—rather melodic sounding, but mostly just a deadly cancer. I fought it with everything I had and, right now, I’m doing well. At my last check up, there was no evidence of the disease. I am a 6 1/2 year survivor.
If you ask my daughter about my cancer, she will tell you one thing, “I saved my mommy’s life.” She says it in such a nonchalant manner, it is if she is saying “The sky is blue” but she is right, she DID save my life.
I cannot remember the moment I became aware of other mesothelioma warriors around the globe, but, sometime in the last few years, my friendship base grew from a couple of people I knew from Boston to many people from all over the world—the United Kingdom, Australia, Brazil; the list goes on and on. A few in particular stuck out because of their fierce passion against this disease and what it has done to their lives and to others’ lives as well. “Turn anger into action,” they say. Sadly, many have passed, succumbed to this dreadful disease and mourned by people worldwide. Many are doing well, fighting hard, and making it known that they won’t give in. I was lucky enough to meet one of these brave women this last weekend when my husband and I attended the Asbestos Disease Awareness Organization’s annual conference in Los Angeles, CA.
I spent the evening making phone calls to family, and friends. My parents live over 600 miles away, and upon hearing the news, made plans to be out here the next day. It’s at least a 10-hour drive, but they needed to be here. I needed them to be here. No matter how old you are, it seems like you always want your mom and dad when you are sick. It was a comfort to know they would be here.