My continued steps through advocacy

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I acted on the lessons I learned while on Capitol Hill and began to increasingly share my story AND follow up. I soon began what I term loosely as stalking both my senators and my representative. Funding for cancer research, screening and early detection for colon cancer, as well as continued Medicare coverage for brachytherapy (which includes radioembolization, or Sir-spheres) became my mantras. I emailed, wrote and faxed my legislators and the White House. Later in 2006, my advocacy horizon expanded. I joined the National Coalition for Cancer Survivorship (canceradvocacy.org) and discovered the importance of care plans. It was also the first time that I met Kathy LaTour and had the opportunity to hear her speak. Later I went back to Washington, D.C. one more time for Celebration on the Hill with the American Cancer Society (cancer.org). I met Carlea Bauman, the new executive director of Fight Colorectal Cancer (fightcolorectalcancer.org) and Jim Wetekam that trip while visiting with Dusty. Sen. John Cornyn's office arranged a West Wing tour for me. I also got to meet Vice President Dick Cheney and remind him that "to win the war on cancer, we must fund the war on cancer."So when I came back to Call on Congress in 2007 with Fight Colorectal Cancer, I felt like an old pro. Better yet, I was meeting with other seasoned advocates and new ones were joining, too. That year we remembered Rebecca Dague and I got to meet Sue Weiler and personally thank her for sharing Shelly and his hope with me. From the opening serenade of Jim and Dusty, to sisters that were embroiled in the colon cancer battle, to the hills of Tennessee, the "no shrinking violet" of Erika from Colorado, to the "I'm still here" of Lisa Dubow, the "Make Em Cry" of Rob, the "I'll be Back" of Pam, to the magical Marilia who I had never expected to meet in person; together our voices were all making a difference loud and clear. I had no doubt because just a short year ago I had never expected to be in the same room with my senators much less meet the vice president. There was nothing quite as wonderful as seeing the pride on Carlea and Joe's faces that year. There was no questioning our job had been well done!I continued pounding the pavement back at home. Gov. Rick Perry declared March Colorectal Cancer Awareness Month in Texas. My representative started avoiding grocery stores where I shopped. And later that year, I testified before Congress with NCCS for the first time about the importance of care plans. When I came to the call in 2008, it was bittersweet. I was really not in shape to be at Call on Congress. I was an emotional mess, having just endured a blockage and feeling as though cancer was once again gaining momentum. But I still hopped a plane to D.C. because I was determined more than ever, knowing that in 2009 I would not likely be alive, to make an impact. Rep. Jeb Hensarling recognized me into the Congressional Record for my work on Cover Your Butt, American Cancer Society, and YES! ... thanks in part to a dear friend, Kathy Baker. During the training, I looked around each table and suddenly realized that there wasn't a single person in the room who hadn't touched my life in some very profound way. Call on Congress held me together. Stirring up just a little bit of memorable, but fun trouble, Marilia and I turned the Cover Your Butt campaign into the Cover Your A** campaign at the closing dinner!Wouldn't you know, I did make it back again in 2009. And again in 2010. In February, I had the opportunity to testify before House, Energy, and Commerce about radiation safety issues. It was a humbling, emotional and important opportunity. I'm thankful that Access to Medical Imaging Coalition (rightscanrighttime.org) paved the path for me to be there.Next, I spent another amazing week in D.C. at Call on Congress among friends and fellow survivors advocating for the prevention, early detection and treatment of colon cancer. I felt like it was a huge year for Fight Colorectal Cancer and one of the highlights for me was being recognized, thanks to Fight CRC in the Congressional Record, by Rep. Kay Granger along with Sue Weiler and Judi Sohn.There was so much progress at Call on Congress I extended my stay for an additional two days. One of the days I again lobbied for continued Medicare coverage for brachytherapy and the other was to watch as Sen. Kay Hutchison renewed the war on cancer with Sen. Ted Kennedy. His health was failing at the time. Meeting him was an honor and one of the most meaningful handshakes of my life. I was humbled that Sen. Hutchison wore my LIVESTRONG band and mentioned me not once, but twice, in her address. In 2011, YES (beatlivertumors.org) held it's first Congressional Briefing and 120 legislative visits later congressional offices knew the issues surrounding the surveillance, prevention and treatment of liver tumors.Sadly, I missed Call on Congress a few weeks later and instead was grounded by a blood clot. It was difficult to remember that I had to put the oxygen mask on myself first ... but another important lesson that advocacy doesn't always happen on "the Hill." Self advocacy bears great weight, too!Stay tuned for 2012!

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