Sunday, October 12, 2014
A Preoccupied Mind
I read the posts of newly diagnosed FAPers and I can almost hear the panic and fear in their written words. And it makes me realize I've never really been that concerned with the future risks and cancer parts of FAP. My attention was focused on my desperate need for my ostomy to be reversed. Even when near death, my only concern was if I could have my ostomy reversed.
I've grown up in the medical field and perhaps that's part of being diagnosed as a child versus a young adult. As a child, you take things in more strides than an adult in some ways because your child mind doesn't comprehend the fullness, the vastness of it all. That can be a blessing. I'm fully aware that I'll have cancer again, maybe a few times even and I'll likely die from cancer. Although I'm still rooting for a quick heart attack haha. But I'm not preoccupied with this reality. I'm not even overly concerned with my health symptoms even though they dictate all of my decisions and daily activity. What to eat, how much, when, where and when should I plan a restroom break, can I walk that far, do I have enough medication and supplies, should I sit or lie down, and so forth. But that's my life and it has been for years.
I'd say I'm in part denial and part acceptance. Amidst my awareness of future risk, I still refuse colonoscopies unless under my terms. I know that's not good and although I likely don't have a tumor in my abdomen at present, I know it's a possibility that I could wake up to any day but I could find out later in the game because of my testing refusals. And at present, I accept that. Perhaps it's my own death wish at play. That and my stubbornness.
I've been pretty lucky in a lot of ways. In spite of nearly dying several times and years of misery, my health has stabilized. I haven't developed any desmoid tumors and I'm very grateful for that. I've even miraculously been able to stop taking Lomotil for the last 2.5 months. I carry lomotil with me as I never know when or if my intestine will decide this is only a trial run to forgo the lomotil. I'm hoping the unexpected trial will be a permanent change but time will only tell as my body likes to make random changes of varying time periods.
I have to stop myself when I have the urge to think chill out with the newly diagnosed. It is a scary thing and it's not a pleasant disease. We all cope differently and our experiences with this disease are all different. The effects are different from person to person. We each find what works best for ourselves through a trial and error learning process and with the help of others. My coping would have been very different if I had been able to be exposed to others with FAP outside of my family.
Just remember, wherever your preoccupation resides try not to become consumed there. Do what you need to live and cope with it to get by but at the end of the day, don't let the preoccupation be your only focus. I've lived like that for years and it took a heavy psychological toll.
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.