The summer of 1988 – I was 15 and that was when my battle with Familial Adenomatous Polyposis (FAP) began. And for me, it has been a long, hard battle.
My father died of colon cancer when he was in his mid-30s. I’m not sure of the details because he and my mother divorced around the time I was born. All I knew was that my mom was fighting with doctors to get colonoscopies for me and my two older sisters. She was afraid the cancer was hereditary but the doctors kept saying there was nothing to worry about. With the help of my grandmother’s oncologist, she was finally able to get us tested. And, man, were those doctors wrong. My two older sisters were fine but I wasn’t. I didn’t have just a few polyps, my colon was full of them.
So the month before I started high school I met my surgeon for the first time and it was decided I needed to have a colectomy done. My surgery was done the first week of January 1989 and I was back at school by February. Mid-February I was back in the hospital for a second surgery. I missed half of my freshman year. That was the start of a cycle that continues today.
Since that first surgery I’ve had over 12 other surgeries done. I’ve lost count or the heart to count somewhere along the way. I’ve also forgotten what a few of the surgeries were for because there were just too many. Most of the surgeries were FAP-related. I’ve lost my colon, gallbladder and also have an ileostomy. If you have FAP you’re at an increased risk for some cancers. We have a 2% risk of developing thyroid cancer. Five years ago I was diagnosed with FAP-related thyroid cancer. In my early 20’s, I decided not to have children because I was so sick. Other medical problems meant having a hysterectomy in my 30’s so even if I had wanted to change my mind, it was too late. As I write this I’m preparing for yet another surgery. It seems like they never end.
I’ve managed to make it this far because I have a wonderful support group. I have a great medical team – a colorectal surgeon who has done my surgeries for 25 years and a gastroenterologist who has been there for over 20 years. I work with people that understand when I need frequent time off because I’m sick or having surgery and are always concerned about my health. And most importantly, I have an incredible family that I can always count on. I may be the only one in my family with FAP but I am not alone in this fight.
Despite all that I have been through, I have learned many things. I am strong and a survivor; I can handle anything that FAP or life throws at me. And I will enjoy my life to the fullest because I’ve fought hard to be here.