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. 

Saturday, April 11, 2015

What is an artist trading card (ATC) ?

Think small, like a baseball card or a playing card. The rule is 2 1/2 inches by 3 1/2 inches. The base is usually stiff paper, an index card works well after it's trimmed. The small size makes it fun to try out an idea or a technique without a big time commitment. The small size also makes them easy to trade and mail. My kids inclue atc's in their letters to their penpals in Russia, and they recieve them in return. They also frequently trade them with their cousins as well. They either keep them in a binder, or pin them to a corkboard in their rooms. My son made this one for the ATC's 4 ACC project. His name and the date are on the back of the card.

I participate in online groups where we trade cards. I came up with a list of themes that I like and my partner chooses one to inspire a card. I do the same from her list, and we mail in 2 weeks. I just recieved a card for my angel theme. It's really cool, and it's not something I would have thought of myself.

Both of these cards will go into the framed collage. It's the variety that makes it interesting. One is done by a child, and one by and adult. One is completely hand drawn, and Once includes a preprinted image. I love them both, and I can't wait to see what card arrives in the mail next!

Wednesday, April 1, 2015

Time to start Drawing, Painting, Stitching, Crafting, whatever!

I've gotten permission to use my church as a safe mailing address, so send your cards here! 

Jennifer Strong

c/o South Milford Church of Christ
8030 East 600 South
Wolcottville, IN 46795

I've also stumbled into an opportunity to share my story. the Spring Salad, is a dinner for ladies in our community. I think the salad part is just to scare the men away. There are pasta salads, chicken salad, taco salad, deserts....very little lettuce involved. It's always fun, and after dinner there is a speaker. 

Awhile back, I had hesitantly offered to talk if they couldn't find someone, but this is way out of my comfort zone. They did end up finding a speaker, and she said she didn't want a fee for coming. so they came back to me, and suggested that i could briefly share my testimony, set up a  table with information about this cancer and my project, and they could take an offering to donate to the Adenoid Cystic Carcinoma Research Foundation. (ACCRF). That is huge to me. This is my home church, and they have always been there for us. I'm excited about this opportunity, but I'm nervous too. 

The dinner is May 5, and I would love to have cards to show. Sometimes we see surgery pictures, or that mask for radiation treatments, and the treatments can be brutal. I want to show the other side of this though. That this affects real people, who are living their lives in spite of this cancer. That they are spread across the country, the globe really, but there is a community that is caring, and helping each other by sharing our stories, to find hope by knowing someone else has been through this. 

Sharing information is huge. So many people go to that doctors appointment and are told the cancer has metastasized to their lungs, and that they have an incurable cancer. You have become invisable to the medical community, they have given up on you. But then you find ACCOI, and ACCRF and there is hope. You find out you aren't the only one. There is someone already fighting for you, making research possible and looking for those answers.