I was diagnosed with Familial Adenomatous Polyposis (FAP) in 1998, in my mid-thirties. I’ll be turning 70 later this year.

As an infant, I was adopted through a closed adoption, so no family medical history was available to my adoptive parents. I lived a relatively normal life until my thirties, when medical investigations led to a diagnosis of Stage I colorectal cancer. I was given two options: a j-pouch or a permanent ostomy.

I’ve always lived by one rule: give it your all or give nothing at all. I chose the permanent ostomy.

After surgery, I went through a difficult period filled with uncertainty, anger, depression, and grief. Adjusting to life with an ostomy wasn’t easy, and I struggled to come to terms with everything that had happened.

Not long afterward, all three of my children were diagnosed with FAP. My son underwent j-pouch surgery and, thankfully, has remained complication-free and continues to live a normal life. My oldest daughter, Rebecca, is now facing pouch failure, while my youngest daughter endured a difficult recovery with complications but has gone on to live as normal a life as possible. Today, only one of my grandchildren has inherited FAP.

Learning that my children had inherited the condition brought back the depression I’d fought so hard to overcome. Along with it came guilt over something I had no control over.

Years later, I required an ostomy revision. Then, in January 2024, I learned that tumors had returned. This time, FAP had affected my gallbladder, pancreas, and spleen, all of which had to be removed. As a result, I am now insulin-dependent for life, live with little to no immune function, and rely on medications to help my body digest food properly. I’ve faced severe weight loss, blood sugar instability, and blood pressure issues, among many other complications.

FAP has taken a great deal from me, but it has also given me something unexpected. It has given me perspective. It has taught me to slow down, to give myself grace, and to appreciate life in ways I never did before.

At the end of the day, FAP has tried many times to stop me, but it hasn’t succeeded.

I’m still here.

I’m still alive.

And every day I wake up is another day that FAP didn’t win.

*photo of myself, oldest daughter and grandchild, 3 generations of FAP*