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.

 

 

Turning a Positive Result into a Positive Decision

Approximately two minutes after I found out I was BRCA1 positive, I knew I would be planning a preventative surgery to help drastically lower the odds of my getting breast cancer. Knowing that my mother had had a clear mammogram just months before being diagnosed with Stage 2 cancer made me want to aggressively fight my odds of getting an especially aggressive mutation. I knew that vigilant monitoring through mammograms wasn't for me, and that I would lose sleep for weeks (or months) before each yearly exam. 

So surgery seemed like the best option. Or maybe the "breast" option?

But At the beginning of this journey, I had no idea how many options are available for mastectomy and reconstructive surgery. 

I first visited with three local surgeons. Each one of them kindly told me I was a good candidate for implants, and discouraged me from thinking about other alternatives. They gave me pamphlets to read, and I read them and tried to wrap my head around the idea of implants. Honestly, the thought of an implant didn’t sit very well with me. Mostly, I couldn't picture myself as a 70 year old woman with implants. When I asked the surgeons if I would need to replace the implants as my body aged, they said I would, as if that was a given, and did not seem to acknowledge the fact that it would be a HUGE inconvenience to have to go back for repeated surgeries. Upon further investigation, I found out that many women have complications with their implants, ranging from minor to major. I just didn’t feel confident going that route.

So I decided to widen my scope. I turned to the support group FORCE (Facing Our Risk of Cancer Empowered), created for those who are BRCA mutation positive. Through various message boards and posts on the FORCE website, I found out about the DIEP FLAP surgery, where they use your stomache tissue (sparing the abdominal muscles) for the breast reconstruction. It involves microsurgery and reattaching blood vessels, which of course sounds scary and intimidating, but the women who have braved these procedures, overall, seem MUCH happier than those who have opted for implants. Many FORCE members recommended two breast reconstructive  centers, one in New Orleans, and one in San Antonio, for this type of surgery.

I reached out to both centers, and got two very different responses. When I contacted the Center for Restorative Breast Surgery in New Orleans, I was asked for my contact information and was told I would get a call back... which never happened. When I contacted PRMA in San Antonio, I was immediately connected with the patient advocate, Courtney, who was incredibly welcoming, informative, and an absolute pleasure to speak with. She made what could have been a very uncomfortable, stressful conversation a very easy, very comfortable one. 

Based on surgeon recommendations I saw on the FORCE website, and my two very different experiences with New Orleans and San Antonio, I asked Courtney if I could set up a consultation with Dr. Minas Chrysopoulo at PRMA. We scheduled a Skype consultation in October. I expected to speak with Dr. C, as everyone calls him, for maybe ten minutes (that was about the length of time my other consultations had lasted). Instead, Dr. C spent at least 45 minutes to an hour talking to me about my decision and the DIEP FLAP surgery. I was so impressed with his patience, attention, and care. And he didn't talk to me like I was a PATIENT. He talked to me like I was a HUMAN BEING. One of the first things he asked me was whether or not I have children, and when I told him I have two little kids, ages 2 and 4, he said, "that BY FAR is going to be the biggest challenge of having this surgery." He got it. He understood the effect of this surgery, far beyond the borders of the operating room. And we had only been talking for two minutes. Dr. C also did everything he could to set realistic expectations for what I would go through, and what the outcome would be. He was transparent. He didn't romanticize anything. He was confident but humble. And by the end of the conversation, I knew I had found my surgeon.

Following the consultation was the long and anxiety provoking wait to hear whether my insurance would cover the surgery. I may have emailed PRMA six or six hundred times to check in on the status of the approval. But when the call finally came, and Courtney told me I was approved to schedule a date for the surgery, I truly felt like screaming "hallelujah!"

So I set my date for the surgery. I have gotten my insurance approval, gotten the ok from work (thank goodness for understanding employers!!), booked our flights, reserved a hotel, and rented a car. I have requested the help of my Eema, my stepmother, for the days following the surgery. I have had conversations with brave, beautiful women who have gone through this surgery and have generously offered to share their experiences. I have had a CTA scan in preparation for the surgery. I have had several conversations with lots of folks who only know about prophylactic mastectomies because of Angelina Jolie, which makes me more grateful to her for going public with her decision. I have scoured the Internet for packing tips, tips on how to prepare (mentally, physically, emotionally) for this surgery, tips on what to expect in the days following the surgery, and tips on where my husband can take the kids in San Antonio (though unfortunately a lot of attractions seem to be closed in the month of February). 

And now I am actively working on staying calm, staying healthy (a big challenge in this household of tiny children), getting organized, and becoming as well-informed as possible. And being a wife and mommy. And working full time.

 It's a lot, but I think I can handle it. 

 

Back to the Blog

It was just about four years ago that I flew out to San Jose to see my mother for the last time before she passed away in February of 2011. It was just about four years ago that I got to hug her for the last time, kiss her face for the last time, tell her I love her for the last time, and most importantly, make sure she knew I forgave her for not being a perfect parent. 

Unfortunately, a very busy life does not leave much time to mourn. Rather than putting aside time each year to grieve for my mom, I have let the comprehension of her death sneak up on me and surprise me at very random times, in very random places. I will be driving to work, or putting the kids to bed, or emptying the dishwasher, and a sense of loss will creep up behind me and put me in a choke hold. Suddenly I will be crying, and feeling like a child, and remembering my mom standing there, with sewing pins dangling out of her mouth while she worked on a craft project. She was almost always working on a craft project.

My mother was 63 when she died, after an eighteen year long battle with breast cancer. She was BRCA1 positive.

In February 2015, just two months from now, I will be commemorating the four year anniversary of my mother’s death in a unique way – by getting a prophylactic DIEP FLAP mastectomy in San Antonio, Texas. The journey to making this decision, ever since discovering my BRCA1 positive status in October of 2011, has been long and complex, but I am glad to have a plan, and a set date for the surgery. 

I haven’t written much on this blog for some time now, and I feel immensely guilty for not better documenting our family’s life the past couple of years. It seems like the minute Oren was born, any free time I had for blogging went out the window. I know it is so unfair to him, that I have this tome of writing describing in great detail Ember’s first few years.. and what? Maybe three posts about him, since he was born? This lack of writing is no indication of lack of love. I love Oren far beyond words. The lack of writing is just a testament to how busy we have been.

But once I decided on having this surgery in February, I decided that I REALLY want to reboot this blog, and to use the surgery as an opportunity to start writing again. I know that blogging will be immensely helpful to me, to my healing, and to just keeping me busy while I recuperate. I know I will have lots of “down time” coming up, and that I will be able to use the time to write about the kids and our family. I ALSO want to document my journey, so that it might be helpful to other women who are choosing to go through the same procedure I am going through, and so that, God forbid, one of my children has inherited this genetic mutation, they will know more about the choices I made to try and improve my odds of not getting cancer. In preparing for my own surgery, I have searched the web and found many invaluable pearls of wisdom from other BRCA positive women who have had mastectomies, and so blogging will be one way through which I can “pay it forward.”

So welcome back to Mooshkatoo. I hope you enjoy reading my upcoming posts as much as I will enjoy writing them.