The range of emotions this week has been high and low. I am clearly out of the denial phase. This is no longer just something I am talking about, the latest news, the hot topic. This is real. And my real attempt to prepare for something with which I have no idea how to prepare. I will do my best to try to explain why this past week has been difficult, how I have dealt and what I have learned about myself.
First the good news; I had an MRI this week and it looked just fine. No other areas of concern. No masses, no malignancies. I must admit, I was feeling pretty cocky about my attitude (you all have pumped me up) that I was unprepared for the hit my mood took while going to the cancer center for that scan. Just putting on those damn hospital gowns seems to put me in a down mood. Add to that a difficult IV stick and all of a sudden I wasn’t sure I could handle any of this. A few days later I received my MRI report and while reading that everything was normal, I had a moment of “what am I doing?” I think my biggest struggle with this is that in the end, it is MY decision. Multiple experts have spelled out the data, given recommendations, provided me with information, risks, benefits, options and opinions. I have reached out to friends, additional experts, done endless research and ended up with similar results. It is my decision to make. Not an easy task, my friends.
To say that I have spent hours, even days with this on my mind, would be an understatement. There are so many “what ifs” in this scenario, it is impossible. What if it never becomes anything? What if I take off my breasts for “no reason”? What if I do develop cancer? What if this already is? Would I regret not being proactive? Will I regret doing this surgery? What if I would need surgery in the future while Takayasu is unstable? What if any of the future surgeries triggered a flare? What is this surgery does? What? What? What? Too much. What I have become sure of this past week is that for me, a woman with a very rare, very unpredictable disease, this potentially cancerous/benign area of cells that put me at higher risk for developing breast cancer is too much for me. Too much for the ALL of me. Not just for my body, but for my mind, for my responsibility to protect my body’s resources (remember the spoons?), for my need to protect my children’s mom and husband’s wife. And what I have learned this week (okay, maybe just today as I write this) is that I trust myself. Whew. No idea when that happened. But I know that I have become a real grown-up who needs to make real grown-up decisions. I trust my feelings, my instincts, my education, and my abilities. I know that in a few weeks when I have my breasts taken off, there will be no looking back because it is the right thing.
So you do not need to worry about me regarding this decision. I have done the work, and I have considered every option. I appreciate all the love and concern, and I don’t for one minute think that anyone who has asked about other options did it out of anything other than wanting the best for me. Am I ready? Probably not. Do I want to go through this? Nope. But, it is the best decision. Trust me.
I said at first I was trying to prepare. I do not think that is possible. I have a friend who has offered her talented, professional photography expertise to help me document my body in the next weeks. I have begun internet research on what I might need down the road. The best clothes to wear after surgery, my options for breast forms (okay, really funny and I must interrupt….I spent 20 minutes on a site before I realized the breast forms I was researching were for cross-dressers – and the measurements were for “male” chests. Oops). I have started shopping for post-op jammies, things to wear when I cannot raise my arms easily, and tank tops. Each time I shop, I end up with a panic attack in the store even thinking about my future reality. Not to put too fine a point on it, but it will be quite a big difference. I am mourning. I am preparing. I am listening to a lot of Jason Mraz on repeat (Details in the Fabric if anyone needs to chill). I am making sure I have photos to show my kids of them nursing. It breaks my heart one minute, then the next I am amused to realize that I am looking at every single woman’s chest that passes me. You know how when you are shopping for a car, you start noticing every make/model of cars on the road? Sad but true for me and chests. I’m sure I will adjust. I will find clothes that work. I will find something that makes me feel normal. I am amazed at this process. I’m sure I am not done being amazed with what will come. I am sure that I am grateful for all of you. Thank you for reading, commenting and thinking of me.
I see the surgeon on Wednesday and go through pre-op studies. Barring any issues, we will have a firm surgery date after that appointment.