Some weeks are Cowden Syndrome and Lhermitte-duclos-free. Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal. I think it is a tad easier to accept these things that I do not like. Maybe I’m getting tired? Or stronger? Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on? (Volunteering at the animal shelter?)
I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least. Suffice to say I didn’t get the scan as I needed to. So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”. (Quotes added but inferred by both she and I.) Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound. Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun. But, we’ll see. We will see. Whatever it is it is. I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things. I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely. THAT, I get. And, I’m thankful for. Doesn’t make it any easier, it just is what it is. Does this sound like growth? HA!
Friday I have a brain scan and then the appointment with the oncologist. I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing. But I have noticed something that is concerning, but nothing I can do about this either: I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big. Getting the information out of my brain in one direction is OK. But what HAS been a problem as of late is when I have to do that in several steps. Meaning: When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard. Frustrating, difficult, confusing, not easy. And, plain ‘ole not fun. I noticed this last month when I was at church. I powered through, because there is no other option, but man it was harder than I wanted it to be!
Isn’t that how most of feel at times about life? That it is harder than we want it to be? Sure, I don’t want brain tumors and high breast cancer risks. I would rather be carrying my Fossil bag at Disney World enjoying the park! 🙂 But, I’m not. I’m navigating slowly this rare disease life. It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have. I wouldn’t have this blog, either. I realized that’s kind of a big deal, too.