Tuesday, March 24, 2015

Jolie and Me



Two years ago, when Angelina Jolie brought national attention to women who are BRCA mutation positive by writing "My Medical Choice" in the New York Times, I was just beginning to think seriously about getting my own prophylactic mastectomy and reconstruction. After reading Angelina's thoughtful and brave article, I was filled with gratitude. It felt like the world had given me a strange but very meaningful gift. A beautiful, confident celebrity the same age as me had JUST gone through the same surgery I planned to go through, and she was really PROUD of her decision.

Five weeks ago today, I went through my own nine hour prophylactic surgery, reducing my risk of getting breast cancer by around 90%. 

The morning of my surgery, I was not fearful. I had been anxious in the weeks leading up to my surgery, but as I entered the hospital, filled out the paperwork, and got my IV, I was very calm. I know it may sound strange, but I thought A LOT about Angelina Jolie that morning. In my head and heart, I felt connected to her. I felt brave, and confident, and clear in my decision. I felt PROUD of what I was doing, just as I had imagined she had felt.

In the five weeks that have passed since my surgery, I have not had a single moment of regret or doubt. Not a SINGLE moment. I am so proud of my decision, and I know I made the exact right decision for me. 

Now, having the bulk of the mastectomy, reconstruction, and recovery behind me, I have just begun seriously thinking about and planning the timeline for my oophorectomy. I know I need to get it done. My doctors have urged (almost begged) me to do it. My maternal great grandmother died of colon cancer, and four of her sisters died of gynecological cancers. My grandmother and mother both had oophorectomies, too. There is no doubt that this too will be the right decision for me, if I want to try and live and see my children grow into adults.

But it doesn't make getting the surgery done any easier. 

So when I heard, today, about Angelina Jolie's decision to get an salpingo-oophorectomies, I again felt like the world had given me a gift. I again felt indebted to this woman I have never met, but feel very connected to, by virtue of our shared genetic mutation, our shared decisions to be proactive, and our ability to be PROUD of our choices.

Angelina Jolie's article is beautiful and truthful. It is not about being self-pitying or self-aggrandizing. It is about gaining knowledge, and using that knowledge to make powerful decisions, so that you can be proud of the decisions you make.

Thank you, again, Angelina Jolie, for sharing your journey with the world, and for being PROUD of your decisions. It makes it that much easier for other women, like me, to share and be proud, too.

Wednesday, January 21, 2015

Micromanaging a Microsurgery



The countdown has begun. My prophylactic mastectomy and reconstructive surgery is coming up awfully soon.

My mind is going a little nuts with anticipation, anxiety, excitement… MORE anxiety.  Seriously, I have begun worrying about EVERYTHING.

What if I get sick with the flu the week before surgery? What if my daughter totally freaks out when I am not with my family for five nights? What if there is a horrible snowstorm right before my surgery date? What if my surgeon sneezes while he is operating on me and cuts me in half? What if my two year old cries for 6 straight weeks because I cannot hug him/hold him? What if a freak tornado hits at the exact moment I am having surgery done? What if my husband mixes red clothes in with the white laundry while I am out of commission? What if the surgeons discover an alien living in my body? 

See? I worry about EVERYTHING.

I also worry about dying on the operating table. 

I also worry about looking like a rag doll post-surgery.

And truthfully, I also worry that I am going to go through with this surgery, and will look like a rag doll, and then I will get breast cancer anyway. Or ovarian cancer. Or melanoma. Or tongue cancer. 

But “Que sera, sera,” right? I should give up on all this unproductive worrying because it is so… UNPRODUCTIVE! I should listen to the words of my daughter’s animated idol, Elsa of Arendale, and just “Let it go! Let it go!” 

And yet, because I have been anticipating this surgery for months now, and because the anticipation has involved all aspects of my head, my heart, my soul…  I just can’t let it go.

Generally speaking, honestly, I am totally a no-drama, easy-peasy lemon squeezy kind of gal. This kind of thing just brings out my inner Woody Allen.

So in an effort to combat all the negative thoughts that swirl around in my brain and distract me from being my normally optimistic self, I have been doing what I know works best to help me calm down and be less freaky. No, not yoga (yoga makes me antsy). No, not meditation (meditation makes me loopy). No, not self-medication (drugs make me queasy). 

My therapy of choice? The OneNote app.

Planning, and uber-planning, and micro-planning every aspect of this upcoming surgery has been my means of self-soothing over the last several weeks, and I've done it all on the cute OneNote app. In my OneNote notebook, I have created a plethora of lists related to the surgery, each filed under a different beautifully colored tab. I have created a “packing list” tab, an “important contacts” tab, a “places to go” tab which lists activities for Chris to do with the kids in my absence, a “shopping list” tab, a “sample schedule” tab (providing Chris with a basic outline of the children’s day), and a “preparing the house” tab. All of these tabs form a beautiful rainbow of preparation, and it is oh so calming for me to look at them. 

If I am feeling panicky, all I have to do is add a pastel colored new tab to my OneNote notebook with a list of books to read or movies to see while I am out on sick leave.  As I focus on compiling a list of dramas and comedies, my worries start to dissipate, and I start to see my upcoming sick leave as an opportunity to catch up on all the Oscar-nominated contenders. Voila! It’s like magic.

I know what this is about, of course. I’m no fool. I am trying to control what I CAN control, because the thought of giving up ALL control as I am laying on the operating table, getting my anesthesia cocktail administered, is totally frightening to me.

Obviously, in a short period of time, my surgery is going to be a reality, and not just tabs and checklists in a OneNote notebook.  Obviously, I have to face my fears, or “embrace the tiger” as I like to say, and just trust that everything is going to turn out okay. I have an amazing surgeon and an amazing team performing an amazing surgery. I have an amazingly supportive family, and an amazingly supportive group of friends, who are all going to be pulling for me and praying for me (and maybe preparing food for our family, which is double amazing). I have made an amazing choice, and I am following through with the choice I have made. All in all, this is an amazing opportunity, and I can see it as just that, if I simplify everything in my head and heart. Because really, deep down inside, I know I am a strong person, and I trust my strength, and I trust in God, and I trust that everything will be okay. Really. 

But for now, I also trust in the OneNote app. It will get me through the coming weeks, and will provide me with a trusty little haven of pretty colored tabs.

 

 

Friday, January 9, 2015

Standardizing Emmy


Chris and I got called in to Em’s school today to talk to her teacher and pre-school director about some recent observations they have had regarding Emmy. When I got the email, asking if we had time to come in and talk, I totally panicked. Millions of questions ran through my head: Is Em acting out? Are other kids picking on her? Is she light years behind her peers in her academic development? Has she started screaming “I hate mommy!” and running through the school halls naked? Is she starting a coup d’etat among the four year olds?
As it turns out, they told us Emmy runs funny. Em’s teacher and pre-school director informed us that the PT worker at the school had noticed Ember turns her feet inward when she moves quickly. She also seems to have some balance issues (which we have witnessed around the house, too, sometimes). She also doesn’t hold a marker or scissors the way they want her to. She also doesn't finish puzzles as quickly as other kids...?
And because she does not run perfectly, or hold her marker or scissors perfectly, or balance perfectly, they are recommending that Em be screened by our school district to see if she qualifies for physical therapy.
My first reaction to this was absolute relief. What they were telling us was NOT any of the horror stories I had conjured up in my head. And they went on to tell us that emotionally and socially, Em is well-adjusted. She is doing really well with her learning, and the teacher has seen lots of development across the board as she has transitioned from a three year old to a four year old. Awesome.
She is just a little… klutzy? Unique? Not perfect?
And now I am wondering, a few hours later - is it necessary to screen Ember, just because she runs a little funny? Isn’t it okay that she holds her marker in a creative way? Aren’t these things she might just grow out of eventually? Aren’t these the little imperfections that make her unique, and cute, and maybe a little silly as a four year old? Do they need to be trained out of her?
I’m torn. On one hand, I don’t want Em to trip over her own feet all the time, of course. I would kind of like her to hold her marker the right way, the way the other kids do. And I am so appreciative that the school teachers and staff are REALLY observing and noticing Emmy and offering us their observations.
But on the other hand, I feel like this screening is just another way that the education system is set up to “standardize” our kids, making sure they all write the same way, read the same way, think the same way, and act the same way. It makes me think of my parents’ era, when being left-handed was thought of as a bad thing, something you needed to be trained out of.  Why? Was it SO necessary that there be NO left handed people in America? And now, is it SO necessary that my daughter run exactly how the other kids run, with their toes pointed straight forward?
Do I think the screening is going to harm Emmy? Of course not. Do I think it may actually be helpful? Kind of. I am curious to know what an objective “screener” sees in our daughter that we fail to see, because of our proximity to her and our love for her. But do I think Em really needs therapy to train her out of her slightly silly run? I’m not sold on it. Yet.