I’m not a strong person. And today confirmed that for me.
I’m going to have to have a mastectomy. *WHEN*. Not if.
I always knew this was around me. I’ve read the paperwork, heard around the way “85% lifetime breast cancer risk”.
(NOTE: This rare disease is so rare that it has different names. It’s also known at Cowden’s Syndrome/Cowden’s Disease/or just Cowden’s. I just mixed it up tonight and put into the search engine a different group of words; they all mean the same thing basically.)
I saw the surgical oncologist again this morning. Another Dr. F. (I have 3 Dr. F’s on my team.) She was great. Spent so much time with me. Listened to me cry. Listened to me ask questions, ones that I couldn’t even really articulate. I’m thankful that she’s an oncologist too. She is very down to earth and very personable. I asked her how many PBM’s she’s done…“A lot” she replied. 🙂 She gave me some other numbers about 1 in 8 women will be diagnosed, age increases the risk, etc. etc. I’ve seen her once before but for some reason this morning’s appointment was different. More Real. More Terrifying. More Panic. More Fear. She asked me what scared me the most about this? And, I should have said a couple of things:
The first thing is that I’m scared to wait too long and no longer consider myself a Previvor. That in December when I have the breast MRI my right breast that has acted up and causing me pain is going to have an incidence. THEN WHAT.
The second thing (I did tell her) was that ~ it’s surgery itself that scares me. It hasn’t been long enough since the craniotomies and when I was awaking from the 2nd surgery…the nurses weren’t doing a lot for my pain management. I WAS IN SO MUCH PAIN WAKING UP FROM ANESTHESIA AT THAT SECOND CRANIOTOMY. I don’t know what made it different from the 1st (I vaguely remember mom saying Dr. K. saying something about WHY my pain was so much more)…but I still don’t know why the nurses weren’t able to give me more medicine for my pain last July.
So. What do I do with this information?
I don’t know. I don’t know. I don’t know. I don’t know.
I thought that having brain surgery was enough in these 40 years of my life. But I’m not done. Apparently.
This cannot define me. I cannot let it drag me down into this pit of hell and depression. I want it to. Believe me. I want to change into my PJ’s and get into my bed, put on my “Friends” DVD’s and just check out. Really. I mean…I AM THIS CLOSE TO DOING THAT.
If the one thing brain surgery taught me, besides ANYTHING else, is that “LIFE HAPPENS.” And then it goes on.
I’m just a jumble of things now. Surgery now? Later? When? WHAAAAAAAAAAAAAAAAAT? With the brain tumor I had no time to plan. No time to process anything. What I hope to do here is do my due diligence and then make an informed decision.
That’s my goal. In a perfect world. I’m going to strive for this every moment because what else is there? It’s not going to work all the time and I’m going to struggle. A LOT. You know those friends I’ve mentioned? Here is when the rubber really DOES meet the road. Here’s where I need help. Love. Prayers. Support. Friendship. A, “Hey Heather! Just thinking about you…how are you today?” And here’s where I’ll see the truer colors of many people. People who are “In it to win it” with me…or not. I don’t know how to go about my day and not be consumed with this.
How do I let these doctors cut off a part of me? (Yes, I would have immediate reconstruction.)
I don’t understand. I don’t understand anything. I had hoped that I’d be married and be a mother at this point in my life. It’s now looking that I’m a brain tumor survivor who must have a mastectomy among other things that Cowden’s Syndrome presents to me. What happened to the life I thought I was going to have? Where did that go? How come I can’t have that life?
So after the appointment this morning I went to the park and walked for a bit. I knew I couldn’t, and didn’t need, to make any decision today. I came home, hugged my mom, took a few deep breaths and did the next best thing. I went to babysit this cute little girl in my ward (who refers to me as “My Heather”) .
We played “Ants in the Pants” and didn’t follow the correct rules – we followed M’s rules. Which is just basically, “My turn.” – then “Heather’s turn.” – with little plastic colored ants flying every which way. 🙂 All this while watching some Dora.
And then there’s tomorrow….