The story of Dan
My name is Dan, retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer WARRIOR w/a permanent ileostomy.
In May 2012, while I resided in Hawai’i, my first and only colonoscopy at age 51 was performed.
The results revealed 100 polyps embedded throughout my colon, rectum and anus. Based on these findings I visited a Certified Genetic Counselor. Germline DNA sequencing testing was initiated. I was asymptomatic and had no family history.
My Certified Genetic Counselor and colorectal surgeon, at Tripler Army Medical Center, Hawai’i, encouraged me to read about the gene mutation they suspected I had. This would allow me an opportunity to better familiarize myself with what is considered life-saving surgery as well as a life-changing event.
The results revealed the diagnosis of attenuated familial adenomatous polyposis (AFAP), which is an autosomal dominant germline mutation. It is estimated to impact less than 0.03% of the global population. It’s important to note, Dr. Henry T. Lynch, the founding father of hereditary colon cancer research, is credited w/the discovery of AFAP. My Certified Genetic Counselor and colorectal surgeon were colleagues of Dr. Lynch.
Based on these findings it was in the best practice of medicine to have total-proctocolectomy surgery w/a permanent ileostomy. Surgery was successfully performed at an Army Medical Center in the days following the diagnosis.
My mindset was, and continues to be:
I tend not to think about things out of my control, such as medical concerns. What I can control is my attitude. After 5 decades on God’s green earth my positive attitude has brought me this far why change now.
During the 9 week recovery process, my focus was to keep my brain busy. Reaching out to numerous organizations nationally and internationally better prepared me for life as an ostomate w/a rare gene mutation. Sharing my journey as a source of inspiration is important to me.
Shortly after my successful colon surgery I had the opportunity to meet Dr. Henry T. Lynch while he was in Hawai’i conducting academic lectures on hereditary colon cancer research. He considered me a colleague and we communicated via e-mail through the years monitoring my AFAP routine surveillance pathology reports.
From the onset, my response was to embrace this condition and adapt to life as an ostomate. Maintaining a positive attitude and having strong faith made a significant impact on my ability to overcome adversity.
I’ve adopted the below four words during my recovery to reflect on:
Attitude = 100%. By maintaining a positive attitude it allows for a better chance of overcoming adversity.
FAITH, I created the following acronym: Full Assurance Influenced Through Hope. Having FAITH is eminence of the unseen. Hence, having hope things turn out good.
ADAPT, here’s my acronym for what it means to me as an ostomate: Attitude Determines the Ability for a Positive Transformation.
Purpose, my Purpose is being an AFAP live-case presentation and educate the medical students and professionals, continuing the legacy of Dr. Henry T. Lynch, on the importance of early detection in hopes of saving lives.
I’m a global hereditary colon cancer live-case presentation. Recently I was invited to be a member the University of Michigan Hereditary Genetic Testing Advisory Board. I’m an annual live case presentation for the University of Texas Health Center, San Antonio, Texas, Genetics In GI Malignancy multidisciplinary Conference.
Recently I underwent successful Pancreas-sparing duodenectomy resection surgery at Stanford University Hospital. This surgery is directly related to my AFAP diagnosis.
In closing, I recall an old cliche, it’s been said you can lead a horse to water, however, you can’t make it drink. However, I discovered you can influence the horse to drink by feeding it salt along the way.
My hopes are by sharing this story it will serve as a source of salt for those who read it.
Always Forge Ahead w/a Purpose!