Do you make every day count? #MesotheliomaAwarenessDay

raising awareness of mesothelioma

If blogging has given me one thing, it’s that I’ve become more reflective. I try and appreciate the simple, everyday moments in life, I find that I’m always trying to capture a moment in time and record it forever – before it disappears. I like the thought of being able to look back on these early years of Taylor’s life in years to come, and I hope that my ramblings will serve as another reminder to her as she grows older about how much she’s loved. Every day.

The joy of being a parent lies in the comfort and knowledge that you will be here (at least for the most part) to watch your children grow up. Their success and failures, loves and heartbreaks, their achievements and mistakes, their graduation, their first job, their wedding day, having their own children…you’ll be here to cherish them all.

raising awareness of mesothelioma

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But what if you were diagnosed with a life-threatening illness and told that you only have 15 months to live? What if your daughter was only just three months old and you were told that you probably won’t be here to raise her?

What then?

I was recently contacted by Heather Von St. James – a fellow mum and a survivor of a rare cancer called mesothelioma. I was so touched by her story and her bravery that I wanted to share it with you. If blogging has made me more reflective, motherhood has definitely made me more compassionate. This is her story…

Heather’s story

On November 21, 2005, my world was turned upside down. I was diagnosed with malignant pleural mesothelioma just 3 ½ months after the birth of my only baby. Mesothelioma is a very aggressive and rare cancer almost always caused by asbestos exposure. I learned that my father, a man who worked in drywall construction, had unknowingly exposed his own little girl to asbestos through his work jacket.

It affects the lining of the organs, most often the lungs. It also is found in the abdomen, and heart. I was given just 15 month to live at the outset unless I did something drastic.

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Something drastic

With the help of my doctor, we got an appointment with the world’s leading specialist in pleural mesothelioma, Dr. David Sugarbaker, who was located in Boston at the time. My husband, Cam and I were faced with many tough decisions. Was it worth it to go across the country to try out this treatment he was proposing? Could we leave our baby girl in the capable hands of my parents for a month or maybe more while I had this surgery?

After meeting with the surgeon, we found out that I was a candidate for a surgery called an extrapleural pneumonectomy, which at the time was very cutting edge. The surgery includes the removal of the lung, the lining of the lung, the lining of the heart, the left half of my diaphragm and a rib. The lining of my heart and diaphragm were replaced with surgical gor-tex.

Roughly ¼ of my internal organs were removed on February 2nd, 2006.

‘My mum kept a journal of Lily for me’

It was bad enough facing this cancer, but to make things worse, we had this adorable little girl, Lily to think of. She didn’t deserve this. She should have a healthy mom and parents who could be there for her. We made the very tough decision to leave her with my parents during my surgery, as her well-being weighed heavily on us. We made sure she was always cared for and surrounded by love. When my husband and I flew to Boston to undergo my surgery, she boarded a plane heading the other way to my childhood home to be raised by my parents. They had their own village that surrounded them and supported them. Lily was loved and cared for in our absence and because of that time, the bond forged between her and my parents is unbreakable.

I experienced Lily’s sixth month of life through emailed photos, phone call updates, and a journal my mom kept every day while I was gone. I can’t read that journal to this day without crying. I recovered at my parents home because I was too weak after surgery to care for her myself, and my husband had to return home to work to pay the bills that kept coming in. I finally got the green light to return home and start chemotherapy in the beginning of May 2006. I underwent four sessions of chemotherapy just three weeks apart. I was so sick for the week following the treatment, then would feel okay for the next week, mostly normal the third week and start the routine all over again.

Finding hope

I finished my last chemo treatment just in time to throw my little girl a HUGE 1st birthday party. We had much to celebrate.

Shortly after, I started radiation. It to me was the most trying part of the whole process. I had my ups and downs after surgery and chemo, and actually felt pretty good and could care for Lily much of the time on my own. Radiation was another story. It is a gradual decline in your health. You feel okay for the first week, but the side effects are cumulative with radiation and as the days and treatments went on, the more sick I got. I lost more weight, 100 pounds in total, I was weak and exhausted. Every morning, I would get sick at the same time, and Lily would stand over me rubbing my back asking “Mama ok? Mama ok?” while I retched over the toilet.

Without the support and help from friends and family, I don’t know how I could have made it through this. My husband was incredible. He was working full time and taking care of Lily and me. Our neighbors would often come get Lily for a few hours on Saturday or Sunday to give him a much-needed break as well.

Another wonderful thing that happened was a friend contacted my church and asked if anyone could help us out around the house. On that next Saturday, about 15 teenagers showed up at our house and cleaned our much-neglected yard and got it ready for winter. They raked the leaves, mowed the grass, cleaned the gutters and the gardens, something that just had to fall by the wayside while we fought cancer. I felt so loved and so humbled at this outpouring of help from perfect strangers. I finished my treatments in mid October 2006, almost one full year from the onset of my symptoms.

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Giving back to the mesothelioma community

I’m proud to say, that all the treatments and surgery worked. I’m almost 11 years out since my diagnosis. I have dedicated my life to giving back to the mesothelioma community. I’ve made it my life’s work to bring awareness to this disease and fight for changes in asbestos laws in the US for all those in the mesothelioma community we’ve lost that are no longer here to fight with us.

I’ve done fundraisers for mesothelioma research for The Mesothelioma Applied Research Foundation and asbestos awareness for The Asbestos Disease Awareness Organization. Both organizations give so much back to the community. To date, I’ve raised over $25,000! I’m proud to blog for The Mesothelioma Cancer Alliance, a fantastic resource of information on mesothelioma and sharing my story of hope with the world. I’ve made friends from literally across the globe with people who have been touched by mesothelioma. I am doing all I can to bring light to this totally preventable disease. Together, we are making a difference and changing things, and that is the best place to start.

Thank you to Heather for sharing her story. You can read more about Heather’s story and find out how you can help raise awareness of mesothelioma over on her blog series

Linking up with #BloggerClubUK

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1 Comment

  1. Nikki Frank-Hamilton
    October 9, 2016 at 5:13 pm

    This story made me tear up, cheer for Heather and her family, and it inspired me at the same time. Not always am I “in the moment” when I am with loved ones. I am thinking, scheming, planning and I fail to be entirely present. When I had my stroke it became a reality that I could be gone. And Heather’s story has reminded me, once again, to try harder. To really enjoy the moments I spend with my husband and children.

    Kudos to Heather for sharing her story and for fighting for those who can’t fight for themselves. What an inspiration!
    Nikki Frank-Hamilton recently posted…Social Media Blast – Facebook Week – I “Like” It!My Profile

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