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 (ACCRF.org) in 2005. ( http://www.accrf.org/wp-content/uploads/accrf_wsj_may2007.pdf ) 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. ( http://www.accoi.org/about-accoi/). 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.