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To the Edge and Back: My Battle With Mesothelioma

17 January 2017 No Comment

If you told me when I was in my 20s that by the time I was 40 I would have been married twice, have a daughter, survive a cancer that most people don’t, rack up close to $1 million in medical bills and live with one lung I wouldn’t believe you. Then again, truth is stranger than fiction.

I loved my 20s. I thought I was invincible. I had life figured out, or so I thought.

I got married when I was 23, bought a house, got my first real job and was doing everything the way I thought I should. There was one major problem, though; I was seriously unhappy. I knew my marriage wasn’t working out and I was miserable living where we lived. I decided it was time to take control of my life and live it on my terms. I left my husband, filed for divorce, and moved to the nearest big city I could find. I literally threw a dart at a map and told myself I was moving to the city closest to where the dart hit. It landed near Minneapolis/St. Paul, MN and on April 5, I moved there.

I didn’t have a job but had a place to live, a little money in the bank, and all the optimism in the world that everything would work out. That optimism has served me well throughout my life, especially when my life took a turn I never expected.

I met my husband shortly after moving to Minnesota and we fell in love on our first date. Ten months later we were married, and things were going well. I had a job I loved and was finally happily married. Before I knew it, I was celebrating my 30th birthday. My 20s flew by, or rather I flew by the seat of my pants through my 20s. I didn’t save for the future, I didn’t anticipate anything bad happening; I just lived and enjoyed it.

When I got into my 30s my husband and I talked about starting a family but decided to wait. We both had good jobs, and all was going well. We bought our home, which happened to be the home he grew up in and started planning for the future. We saved a little bit of money, but just as things were going alright, he lost his job. I put in extra hours at the salon and eventually he got another job doing something totally different than what he had been doing. He was now driving for a courier company and was enjoying the job’s freedom. The pay wasn’t great, but it was a job and that is what mattered. This was back in early 2000s before the housing bubble burst and the recession happened.

We were making ends meet and getting by, so we decided this would be as good a time as any to start a family. Not the greatest plan, but we figured why not. A year later, we welcomed our baby girl, Lily, into our lives. Three and a half months later, our world fell apart.

I was diagnosed with malignant pleural mesothelioma, a cancer almost always caused by asbestos exposure. My dad worked with asbestos when I was a child, unknowingly exposing me to the toxic fibers when I was just eight or nine years old.

No one plans to get cancer and to say we were devastated would be an understatement. Mesothelioma is a rare cancer, only affecting about 3,000 people annually, so finding a specialist wasn’t easy. My best hope for surviving was seeing a doctor 1,400 miles away from my home in Minneapolis/St. Paul, all the way in Boston.

The treatment I went through was radical. I had my entire left lung removed, the lining of that lung where the cancer was, the left half of my diaphragm, the lining of my heart and a rib as well. During surgery they pumped a chemotherapy solution that was heated to 140 degrees Fahrenheit into my chest cavity and washed it around for an hour. I spent 18 days in the hospital, and another two weeks in Boston recovering before I was able to return home to my parents house, where my baby had been living while I went through surgery. I missed her entire sixth month of life. I can never get that back, but because of that hard choice I’m alive 11 years later.

We weren’t prepared financially for a setback like this. We were faced with the very real possibility of losing everything we had worked so hard for; our home, our cars… not to mention my life! I had many thoughts like, “If only I had saved more money,” or “If only I had gotten disability insurance.” But like they say, hindsight is 20/20.

I’m proud to say everything turned out alright, but not without a lot of sacrifice. But those sacrifices were necessary so we could continue to live in our home. Plus, through the generosity of friends and family hosting a couple benefits for us, our travel expenses for the next few years were covered.

I recently turned 48 and I honestly never thought I would live this long after my cancer diagnosis, but here I am! I learned much from those lean years, but the main lesson was to always be prepared for the unexpected. We have an emergency fund now with six months living expenses saved up, just in case something happens. I’m always adding to it and planning for the future instead of winging it. I wish I had started in my 20s because I would be in a much better position financially. My husband now has disability insurance that will pay in the case of something happening to him.

I was never able to go back to work in the salon with the loss of my lung but found a new calling because of the cancer. I now work as a patient advocate, bringing awareness to mesothelioma and asbestos awareness. A cancer diagnosis would signify the end for many, but for my husband and I, it was a wake-up call to live our lives with purpose and look to the future together. We know my cancer could come back at any time, but we don’t dwell on it. Instead, we enjoy all life has given us and plan for the unexpected. Everything in life is a lesson, and the trick is learning from it.

My advice to you is to learn from others’ mistakes and try to plan for life’s surprises. I found out very quickly how fast life can change from having it all to nearly losing everything. It’s never too early to start planning and there is no time like the present.

Heather Von St. James is a mesothelioma advocate living in Minnesota with her husband, Cam, and daughter, Lily Rose. She can be reached by email at heathervsj {at} mesothelioma.com

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