You know how words have power, right? Words such as, “You didn’t win the contest”, or “You’re going to be a father!” can turn a world upside down. Just as “You’re doing great! You’re fantastic!” can send someone over the moon. Words are so powerful and hold so much meaning. Tone of voice, the written word, all of it. So powerful. I am humbled by it all, really.
Since diagnosis I have had a lot of words in my head, and continue to write on this blog to honor my truth and voice. I have no other outlet, really, so this blog it is. I’m not complaining, just stating a fact. But yesterday, something happened and this blog didn’t carry me as far as I would have hoped.
I had a brain MRI the end of March and just received the Final Report the day before yesterday. I scanned it as best I could, saw the words, “stable” several times, so felt as good as can be expected. Stable is amazing. Eventually, these brain tumors are going to grow and I have to be ready for that day. I don’t know if I am really ready (probably not), and I fear that I will come unhinged when I am told there is growth. Anyway, I digress…
I find interesting that I didn’t even catch these words when I read them; Mom read them out loud and I was turned into a pretzel because of them. Words, people. Remember how I mentioned in the beginning that words are powerful?
Stable postsurgical changes are noted in the left cerebellar hemisphere with volume loss.
Volume loss. I’ve never read or heard words like that about my brain. All day I could tell my anxiety was rising. Volume loss. Part of my brain is gone. Granted, it’s the diseased part, but still. I came unhinged. Left work early. Caused such a hitch in my day. I couldn’t stop thinking about the space in my brain. All because of those 2 stupid words: Volume loss.
Volume is the quantity of three-dimensional space enclosed by some closed boundary
Loss failure to keep or to continue to have something
Even now as I write this, and really do my best to process my feelings, I’m stuck. Stuck stuck stuck. Do you want me to just “Let it Go”? Oh, sure. Well, if it was that easy I would have done it yearssssssss ago. 🙂 I’m not going to will-away these feelings. You know why? Because it sucks. And, I’m going to say it sucks rocks. Yes, I know the power of positive thinking, and yes I just began to meditate again with a positive mantra, but this is exhausting. Being positive all the time is exhausting. Part of my brain is gone, and I’m sad. I’m mad. I’m scared. I’m alone. I’m worried. I’m panicked about not having money. I’m terrified for my future. I’m worried how my balance is progressing so badly. All these things I worry about on a moment to moment basis and I’m constantly putting on a face trying to be positive? It sucks and I’m tired. I want my brain back. I know that I have to let go of what was, and focus on what is. But you know what? What is kinda sucks right now. Can you blame me for wanting things to go back as they once were?
I get life doesn’t work that way. Life is about progressing (hopefully) and moving forward. I know all of this. It’s just that every once in a while something happens, or I hear something, that sends me over the edge. Doesn’t help that I have been so depressed lately. I still wish I knew what that was all about. I’m exercising 2-4 times a week, working on mindfulness when I’m eating, still in therapy, and really focusing more on this blog where I write all this junk out. Because, that’s what most of this stuff is. It’s just junk. It’s not doing me any good to hold on to all this fear and crap. But, I can’t help how I feel. And, imagine if I make the decision for the prophylactic bilateral mastectomy, then what? I have had 2 brain surgeries, a hysterectomy, 2 thyroidectomies, what else of my body do I have to give to Cowden Syndrome and Lhermitte-duclos Disease before I can have peace of mind?