A Funny Thing Happened On the Way to My Surgery

I don’t feel like my life has ever followed a predictable script, and I see that as a positive. If I have developed any skill in life, it might be the ability to “roll with it,” no matter what curveball has been thrown my way.

Well, it seems we have been thrown another curveball.

Chris and I travelled to San Antonio in mid June for the second phase of my reconstructive surgery. The surgery was something I was looking forward to, and having been through the first phase of surgery so recently, I wasn’t really nervous about going through with it. 

A tropical storm had been hitting San Antonio the week of my surgery, so I rearranged our flight to get us in to San Antonio the afternoon prior to my scheduled operation. Chris and I arrived in Texas, ate some delicious Tex Mex food, and checked in to our hotel. We walked around the neighborhood, relaxed, and I did my scheduled pre-op prep work: showering with antibacterial soap, no eating or drinking after midnight, etc.

The morning of the surgery, we woke up early and drove to the hospital in the rainy remnants of the storm. As I was waiting to be admitted to pre-op, I met a lovely woman who was also going to be going through her second phase surgery with another surgeon from the same surgeon’s group I was using. We spoke about how wonderful our experiences have been with PRMA, and compared notes about the recuperation from the first phase of surgery. 

I was then called in to pre-op, where a friendly nurse administered my IV port, and spoke with me about my reasons for traveling all the way to Texas for surgery. Another nurse came in and got my urine sample and asked me several questions about my health history. She then left the room for a few minutes.

Another few minutes passed. And then another few. I began to worry because the clock seemed to be ticking closer to my scheduled surgery time, and I had not yet seen my surgeon.

The nurse came back in. She was holding two familiar looking objects in her hand, and had a strange look on her face.

“I did the test twice,” she told me. I then realized she was holding pregnancy tests.

My jaw dropped open. I covered my mouth and screamed. It was THE LAST THING I would have ever expected to happen.

“I think I am going to go get your husband now, so you can tell him the news” the nurse told me. I looked at her and shook my head. I still had no words.

When Chris came in the room, he took one look at my face and said “what’s going on? Is something the matter?”

And then I broke the news to him. And we both sat there, dumbfounded, joyful, confused, floored by the unexpected news of our pregnancy.

 

I don’t know if I believe in dreams, or signs, or if I just think sometimes the world presents very strange and uncanny coincidences.  

About three weeks prior to our trip to San Antonio, Chris came home from work a little late one night, while I was giving the kids a bath. He came into the bathroom and told me that something funny had happened at work. He said one of his co-workers, a guy he hardly works with, had come up to Chris and told him he had had a dream about me being pregnant.

I just laughed. 

Chris told me if, for any reason, I WAS to become pregnant, he wanted me to be assured that he was okay with having a third child.

I laughed some more. I told Chris there was no way I was pregnant, or would become pregnant, and that he should go tell his co-worker to not waste his dreams on me.

 

This crazy news comes with a whirlwind of emotions. I am thrilled to be pregnant. I totally thought I had closed the book on that chapter of my life when Oren was born. I love babies. I love my kids. I am 100% sure that I have room in my heart for another child, and I am psyched for Emmy and Oren to have another sibling. I am amazed by my own body, actually kind of PROUD of my body, and by its ability to get pregnant just three months after a really intense, invasive surgery. But I also feel guilty that it is so easy for us to get pregnant, as other friends struggle to have their first or second children. I’m also sad that I won’t be breastfeeding this baby. I am also worried about being 40 and pregnant. I am also nervous about having a third c-section.  

It’s crazy. It’s amazing. It’s silly. It’s strange. 

I guess I’m just going to do what I do best, and roll with it.

 

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.

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. 

 

Thank you, Angelina.

Because the first thing I thought, after hearing the news story about her elective double-mastectomy, was “if she can do it, I can do it.”

When I found out, back in November of 2011, that I have the BRCA-1 mutation, the  decision to opt for a preventative double mastectomy, followed by an oophorectomy, was pretty much a “no-brainer.” I had lost my mother to breast cancer earlier that year, and wanted to be pro-active in making sure I wouldn’t have to face what my mom had to face: a radical mastectomy, chemotherapy, brain surgery, medication upon medication, and eventually a very heart-breaking, very painful physical decline that preceded her death. I also wanted to do what I could to make sure I would be able to enjoy many years with my children, my husband, my extended family and my friends, without my life turning into a constant battle with a life-threatening disease.

A year and a half has passed since I received the results of my genetic testing. In that span of time, I got pregnant with my second child, had a second c-section, and have breast-fed my son for five months, all which have delayed any steps I can take toward having the surgeries. I have also had time to REALLY come to terms with the decision I am facing, the impact it will have on my body, my brain, and my heart, and have had lots of time to doubt my decision. Do I really want to put my body through yet another surgery? Do I really want to see MORE scars than I already do when I look in the mirror? Am I ok with completely losing feeling in my breasts? Am I okay with becoming post-menopausal in my early 40s? Or should I perhaps just be super-vigilant about self-monitoring, without opting for such a radical surgery?

It’s not an easy decision. But hearing about Angelina Jolie’s choice to get the preventative surgeries has been incredibly comforting. I mean, it’s Angelina Jolie! Never in a million years would I have thought that she and I would have much in common. But here we are, both 37 years old, both with mothers that have recently passed away from cancer, both having the BRCA-1 mutation, both having to decide what to do with the knowledge about our genetic makeup.

And, I mean, it’s Angelina Jolie! Lara Croft, Hollywood goddess, mother of eight billion children, Special Envoy of UN, wife of Brad Pitt! Every move she makes is watched, documented, praised or criticized. She is probably one of the only women in the world who would make international headlines for making this kind of decision public.

It’s not that Angelina’s decision makes my doubts go away. And it’s not that her opting for a double-mastectomy makes my choices any easier. This is still MY body, and MY decision to make.

But seriously, it is encouraging to know that if I DO choose to get the surgeries (which I in all likelihood will), I will be sharing my journey with a very beautiful, very brave, very public figure who chose to be proactive in making decisions about her health, her future, and her identity. Her statement, “I feel empowered that I made a strong choice that in no way diminishes my femininity,” in turn empowers me to make my decisions without feeling like I will be losing my sense of self.  

If she can do it, I can do it.

So thank you, Angelina. 

A Scar is Born

So I was at an event this weekend – one where I knew just a handful of people, but tried my very best to be sociable and meet new folks and make small talk. Generally speaking, I find it easy to talk with other mommies, as there is obvious common ground, experiences to compare, and advice to be shared.

At this event, my daughter quickly made friends with a three year old girl, so it seemed appropriate that I talk with the little girl’s mom. The mommy was very warm, and sweet, and even went so far as to share her daughter’s snacks with Emmy.

After a bit of talking, the mommy and I started to share birth stories. She shared that her daughter had been born prematurely, but she was able to avoid a c-section and birth her baby naturally. I then shared with her that although I had hoped to birth my children naturally, I ended up having a c-section both times.

The mommy said she thought I was lucky for avoiding natural birth, and for some reason said that having a c-section probably helped my stomach look better than someone who had given birth naturally. I laughed and told her my stomach was hardly a thing of beauty, especially given the c-section scar that lives right below my beloved “pooch”.

“Oh, yeah,” she said, “but you can just get that fixed. I think that’s what everyone is doing these days, you know? Having a few babies and then just getting the surgery to get it all fixed so you look even better than your friends who don’t have kids.”

I think I responded by saying, “oh, ” and kind of laughing.

Is that what EVERYONE is doing these days? Popping out a few babies and then getting cosmetic surgery to erase any evidence that their body gave birth?

Granted, the crowd at this event was definitely a different and much wealthier crowd than the one I generally hang with, and this mommy's idea of "everyone," is probably very different from mine. It was a crowd of beautiful mamas with designer clothes and super-expensive bags and even pricier shoes. It was a crowd of families that have gigantic homes or beautiful New York City apartments and nannies and lots of all the best things in life. And maybe it was also a crowd of folks who REALLY don’t want to look like they’ve ever given birth.

I am not here to cast stones, or to judge the affluent crowd. Everyone I met seemed very kind and very smart, and I think they work really hard to support their lifestyles. I am totally envious of their beautiful wardrobes, their homes, and their cars. But I tell you, I am NOT envious of the pressure that comes with the sense of needing to keep up with what “everyone is doing.”

When I got home from the event, and took a shower that evening, I looked in the mirror, and saw the smiley face scar situated below my belly. I won’t lie and tell you I think my belly is beautiful. It’s NOT beautiful. But it is a daily reminder of the two most important moments in my life. I am so proud of what this body has been through, and I can certainly live with my “battle wounds.”

Emmy points to my “boo boo” all the time and asks if it is getting better. I always tell her it’s ok, my “mommy smile” doesn’t hurt me, but it will probably really never go away completely.

And honestly, I really hope it won’t.