Calm Waters Ahead
Diagnosed with Attenuated Familial Adenomatous Polyposis (AFAP) after his first colonoscopy at age 51, retired Navy sailor Dan Shockley's mission is to make the world aware of the importance of early cancer detection.
AFAP is a rare genetic condition in which polyps form in the digestive tract and increase the risk of developing into colon cancer. In Dan's case, doctors found at least 100 polyps embedded throughout his colon, rectum and anus, as well as a large tumor in his transverse colon. After extensive DNA testing and the AFAP diagnosis, he underwent ileostomy and proctocolectomy surgery in 2012 at Tripler Army Medical Center (TAMC) in Hawaii.
As a veteran of Operation Desert Storm, Operation Enduring Freedom and Operation Iraqi Freedom, Dan was well versed in reconnaissance.
"When I heard the news I broke it down into phases like the militarythe gene mutation, the surgery and living with an ostomy," explains Dan.
He learned as much as he could about AFAP, including that the gene mutation will spread and that there is no cure. Dan even connected with Dr. Henry T. Lynch, who is one of the founding fathers of genetic research and is credited with discovering AFAP. The two have remained friends and exchange information every six weeks.
The six-hour surgery to remove Dan's entire colon, rectum and anus was performed by Dr. Ronald Gagliano, Chief of Colon and Rectal Surgery and Director of Surgical Research at TAMC. What might have sunk a less resilient man fueled Dan to forge ahead.
"I realized that what I can control is my attitude. After 51 years on God's green earth, my positive attitude has brought me far in life. Why change now?"
Dan credits his smooth recovery to Tripler's Wound, Ostomy, and Continence (WOC) Nurse, Nina Lum. She educated him in caring for his pouching system, and discussed dealing with body image and embarrassment issues. By the time he was released from the hospital, Dan was self-sufficient. He stayed in close touch with Sue Ropke, his Hollister Secure Start services patient coordinator and Jeff Foudy, his Hollister sales representative. He considers both his guiding lights.
Not one to remain idle during recovery, Dan did a lot of reading. UOAA provided him with a copy of the "Ileostomy New Patient Guide" which featured Bob Cuyler who is an Army helicopter pilot and a fellow ostomy patient. Dan reached out to him and they swapped experiences. The importance of connecting with others in the ostomy community for advice, solidarity and healing became clear, and Dan's advocacy mission was launched.
His story piqued the interest of the TAMC newsletter, the WOCN Society magazine and The Phoenix Magazine, and soon Dan was making a name for himself throughout the colon cancer and ostomy communities. He contributed an article to the Fight Colorectal Cancer organization website, and was a guest speaker at several American Cancer Society events as a Colon Cancer Champion.
"My outlook is: another day, another positive testimony. Sharing my story with the masses will hopefully be a source of encouragement and inspiration for bringing awareness to the importance of colorectal screening," says Dan.
In 2016 Dan joined the Singles with Stomas Facebook group where he met Donna Desoto, a retired Army veteran with a urostomy living in Texas. After two years of long conversations on the phone, they knew they were meant to be together permanently.
"I thought, well I'm not anchored anywhere, I can pack up my sea bag and Sam, my emotional support dog, and move anywhere," says Dan. "Sometimes you have to go with your gutno pun intended!"
Since May of 2018, Dan and Donna have joined forces in the ostomy arena to advocate for legislation and awareness in Texas. On World Ostomy Day, they appeared in the Comal County Commissioner's Court in front of 100 people to accept a proclamation designating October 6, 2018 as Ostomy Awareness Day. They were also proud to acquire proclamations from the city of New Braunfels and the State of Texas.
When it comes to the future, the waters ahead are calm. Dan and Donna plan to continue their journey together as a source of inspiration for the ostomy community, and to advocate for early colon cancer screening.
Dan's mantra is "Always Forge Ahead with a Purpose (AFAP)"a positive spin on the condition that transformed his life. He has created another oneAttitude Determines the Ability for a Positive Transformation (ADAPT). We totally agree.
Dan Shockley is a 22-year Navy veteran. He is a volunteer advocate with UOAA (United Ostomy Associations of America) in the Advocacy Network and promotes ostomy and colon cancer awareness any chance he gets. When not advocating, he enjoys hiking in the woods with his girlfriend Donna and his support dog, Sam. He lives in New Braunfels, Texas.
Financial Disclosure: Dan Shockley received compensation from Hollister Incorporated for his contribution to this eNewsletter.
