My NEW days

Last week I had beach day and a few days before that I had sushi day. Well, today was Rare Disease day. Not the official Rare Disease Day (that’s held February 28/29), but Rare Disease because I had to visit the oncologist to review the latest mammogram I had earlier this month.

Just a recap for those who are new to my blog, I alternate every 6 months with very intense screening on my Dairy Queens. Usually in the summer is the mammo and the Winter (December-ish) is the breast MRI. Since these diagnostic tests aren’t 100% I also need to have clinical breast exams in addition to my self-breast exam. Oh by the by, did I mention my lifetime risk of breast cancer is 85%? Thanks Cowden’s Syndrome. Effing thanks!

Needless to say it’s a lot to manage. For me, for any person. During today’s visit we talked about the hysterectomy, and reviewed the mammo results (which were good. Yay!) and talked some more about which doctor on my team is going to manage which thing. Meaning, my primary care will take care of me as a whole being, Dr. L is just going to be focused/managed/(she used another word I can’t recall but it really made sense) on the specialty/cancer risks. It’s been a bit tricky to figure out which doctor is going to order, and then read, oh and then follow-up, with which test at which time.

Have I mentioned that Cowden’s Syndrome comes with a lot of baggage?!

Eff you Cowden’s! Like I didn’t already have baggage of my own before you came along!

(Of course I’m being a bit factitious. I’m working really hard on the pre-baggage I have…but now, thanks to CS, I have TONS more! You know, sometimes, if I’m not careful, I worry too much that Mr. “Right for me” isn’t going to want to get on-board for all of this. Sometimes, I wonder if I’m even on-board, how could I hope that another person would be too!?)

NOTE: The key words are “sometimes”. I don’t practice a good game with this all the time, but I try. I really do try!

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