Sunday, February 16, 2014
20th Anniversary with FAP
I'm not very good about remembering health milestones. I don't usually think about how many years since my first surgery or my last and when I do it's not typically anytime around the anniversary. But this year I did remember that it's been 20 years since I've started with my GI doctor. 20 years since diagnosis of FAP, 20 years I've been listened to and 20 years I've battled what FAP is and can become. 20 years.
I had such a difficult time getting any PCP to listen to me and my parents to obtain the necessary referral to see a GI specialist. I'm not sure how after such a fight for the referral I finally obtained one for the best pediatric GI specialists in the state and who is well respected outside of the state. But I did and I'm so grateful. I haven't always liked my doctor. As I mentioned in my last post, there were several years that I hated and blamed her. As I started my own psychological healing, I've realized how terrified I am of losing her as my doctor. I greatly admire and respect her. She has always stood by me and fought for me, whether with other doctors, hospitals, insurance, schools and jobs. She is my greatest advocate. 20 years I've been so fortunate.
I've seen a lot in the last 20 years with diagnosed FAP. I've had seven surgeries, more than enough near death experiences, endured PTSD, cycled in and out of severe depression, given the prognosis of stomach cancer by age 30 (I have two more years to make it past that prognosis!), completed school and maintained full time employment, got married and looking at surrogacy. I have good and bad days like everyone else but I'm hopeful that the worst days are behind me. 20 years it's taken to get to the place I'm at now.
Who knows what the next 20 years will hold. There's always guaranteed sadness and happiness. I do know that I won't have my doctor for another 20 years, it's very likely in that time period to develop cancer again, I hopefully will have adult children by then., I am likely to have lost and gained more family and friends. These are all realities I keep tucked away, taking it one step at a time.
That's how the last 20 years have gone, one step at a time. Although at times it felt like crawling steps and at times giant leaps. I look forward to seeing the future and what's in store but for now, I'm going to savor where I am at now and honor what has transpired to get me here. Our trials and our joys deserve to be honored, they help shape us and direct us in life.
20 years, I've made it. And here's to another 20 years.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.