Monday, April 27, 2015

Walk, Run, do something!

     I've been thinking a lot about my story, how to share it, how to narrow it down to a few minutes. It's harder than I expected, because there are so many other people's stories who have become a part of it. For the first 9 years, after the original surgery, I focused on getting back to my life, taking care of my family. The kids grew up, they started school, and I started substitute teaching. Cancer had a limited role in our life.

      My husbands company does a team for Relay for life with the American Cancer Society. Cancer survivors wear a purple shirt, and it's encouraging to see how many people do go on, and live healthy lives. We started taking our kids to make the word "cancer" less scary for them. They've grown up knowing I have checkups ,but I don't think they've given it much thought. Last year, after we found out the cancer was back, I designed a "strong and courageous" t-shirt for our family to wear at the walk. 

     I also started doing research into ACC. I really didn't know anything about how cancer research is funded.  Because ACC is so rare, their isn't funding from the American Cancer Society, or national organizations. Marnie and Jeff Kaufman formed  Adenoid Cystic Carcinoma Research Foundation ( in 2005. (  ) Their foundation has done a lot to raise money, and locate researchers to study ACC.  Prudence Jackson founded Adenoid Cystic Carcinoma Organization International ACCOI  in 2000 to help patients connect with each other. ( Individual families have also created organizations to help raise money to support ACC research. 

     Last spring, through ACCOI, I heard about Live Like Andi, a walk/run in Michigan, in honor of Andrea Whitesell O'Connell.  She had lived with ACC for 21 years. The Money raised would go to ACCRF, ACCOI, and a scholarship fund. Our kids ran the 1 mile fun run. My husband and I walked it.
      I also got to meet other people with ACC face to face. The first person I met was Kara. She's actually on the board of ACCRF. She was fit and ready to run the 5 K. She also told me she had mets from ACC in her lungs, and had part of her lung surgically removed. In my mind, those 2 things didn't fit together, but it was so encouraging to see someone living an active life in spite of this cancer. I also met a couple people who where more recently diagnosed and I hope I was an encouragement to them. My husband said it was helpful to him as well. To know that other people went through months of being misdiagnosed, and it wasn't something we had missed.

     We were just dealing with something so rare, that no one would expect it. I was too young, I had no risk factors, but I had cancer anyway. That happens a lot with ACC. It grows slowly, and in places you wouldn't expect cancer to grow. That means there is time to live with it, but it makes it very hard to cure. Chemo therapies go after those fast growing cells, but that doesn't work with this. The best treatment is go be aggressive with the primary tumor. treating it with surgery and radiation, hoping for a cure.  When it metastasizes, according to ACCRF, "if you have tumors that are clearly growing, you face a journey with few signposts and even more potential paths to follow." There isn't a treatment right now that can go after those microscopic cells and stop them from spreading. The need for further research is so important. 
     There are other families that have created foundations to raise money for ACC research and patient support. We attended the ATTACKACC walk in Illinois last fall.  I found myself wondering what I could I do with my talents? I'm not a runner, but I am an artist. Creating this blog, and the atc4acc project is my way of sharing my story, and contribution to research funding. we'll see where it goes. 

1 comment:

  1. Great blog and wonderful photos. I hope lots of people will follow your story and send you cards for your project. You are amazing Jen. Love Mom