Things have been rather quiet on the Cowden’s Syndrome front – and I’m very thankful. But you know what? There’s a small, nagging voice in the back of my mind that has bothered me. And I think that is part of the reason I haven’t written too much lately about my health, because if I sit down here and right about the breast, colon, uterine, kidney cancer risk I might jinx something. Oh yeah and then there’s that brain tumor thing too.
I remember reading in one of the user support groups about these “6 month windows” – where you try to live your life as best you can and do what you can to not let CS get to you. But then when the time comes for your screenings you put on your big girl panties and suck it up and deal with it (my words). I guess after almost 2 years since diagnosis (Fall 2011) I am in the groove. But you know what else? I don’t want to be in any effing groove for Cowden’s Syndrome. I don’t want to be concerned FOR THE REST OF MY LIFE about the risk of breast, colon, uterine, kidney, oh and melanoma cancer. All the while my brain is getting scanned too. I don’t want this. I don’t want Cowden’s Syndrome. I want my life that didn’t have this pressure. I want my life full of fun and joy and laughter without this looming over my shoulder.
This is what comes out of my mind at 10:21 PM. Maybe now I can sleep.
When I need to get away from Cowden’s Syndrome and Lhermitte-duclos disease – I will share my love of edited photos, which I have done lately. I guess that’s a way I live my life separate from rare diseases and brain tumors.