I’m not sure if starting this blog will be helpful. Will it be helpful to me, helpful to others, or just something for someone to read because they kind of know me or have heard about my rare disease? I really don’t know. But for now, I have bigger things to worry about. Like breast cancer. The most common immediate response I’ve heard? “You have GOT to be kidding.”
I have a high risk breast lesion in my left breast. We do not know yet if it is cancer, but I cannot afford the risk of an additional surgical procedure to find out. I cannot afford a second major life illness to take up my time/energy/body/life. I cannot afford to worry. Or wait. Or cry. Okay, maybe cry a little.
What I can do is put on my armor and fight. This armor of mine, you see, has served me very well over the past twenty-some years. It has taken a beating and protected me well. Takayasu’s Arteritis (TA) has been my opponent since I was 19 years old and at the moment, I am winning. I feel good, I feel strong and alive. I was hoping to keep my armor hanging in the closet a little while longer, but I don’t have time right now for complaining. I need to put on my armor and brace. So that’s what I’ll do.
These are a few examples of what I heard at Duke yesterday between the hours of 9 AM and 5 PM, seeing 3 different services…. “There is no one else like you; we only have a handful of Takayasu patients, and none of them have had this issue.” “You are not a good candidate for radiation.” “No, no, no, no, no, you cannot take Tamoxifen.” “Hmmmmm, we don’t know exactly how your body would react to that situation.” “Your body cannot take a second hit. You just cannot get breast cancer, if it isn’t already there.”
Cliff notes: “We recommend bilateral mastectomy without reconstruction.”
I wasn’t kidding when I said to brace.
Come with me, friends, on this magical journey called real life. There will be anger, grief, humor, gratitude and photos in the coming weeks. Yes, if I am brave, there will be photos (just not bare photos). What I can also promise is that I will allow myself to talk my way through this. The down side to wearing armor for so long is the notion that I HAVE to be strong. Not allowing myself to show weakness, sadness or even vulnerability. It is not natural for me. I have too much fun being a badass mother-fighter. But, in order to deal with what I am about to endure, I need to be real. That is why I am writing.
Spoons and armor, you ask? My TA family knows all about my spoons. I will expand on the theory another day when I have more spoons left to give.
I am Susie, by the way. I hope this helps us all.