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.

 

The Story of My Surgery

IIt occurred to me tonight, while looking through my past few posts, that I never actually wrote about what getting the DIEP flap surgery was like for me. It's funny because I feel like I have written about it twenty seven times, but I must have only been thinking about it in my head. I never actually put the experience down in words.

About ten weeks ago, my family and I flew out to San Antonio for my surgery. In the weeks prior to our travel, I had come down with a cold, but it wasn't a terrible cold. I wasn't hacking up a lung or anything. It was your standard, run-of-the-mill cold that generally just goes away within a week. I thought it was a nothing.

As it turns out, it was not a nothing. On the flight to San Antonio, my little cold turned into a horrible earache that made me want to tear my ears right off of my head. And then it turned into a sinus infection. And strep throat. When I went to the hospital on the day of my scheduled surgery, the nurse in admitting took my temperature and then gave me a look that said "how the heck do you think you are going to make it through surgery with a 102 degree fever?!"

My amazing, kind, lovely surgeon came and spoke with me. He told me I was fighting an infection, and I was not in good shape for such a strenuous surgery. He told me if I was HIS wife, he would not want me operated on that day. So, through tears of disappointment, we planned to reschedule the DIEP flap surgery for the next week. I was incredibly lucky that Dr. C was able to fit me into his schedule, and that rescheduling did not require me and my family to fly back and forth to San Antonio again. I was given some pretty hefty doses of antibiotics, and for the next week, my body worked on getting better.

On the day of the actual (rescheduled) surgery, one week later, I went to the hospital at 6:30 a.m. to be admitted. I remember having my temperature taken, getting my blood pressure taken, and getting an IV. I remember Dr. C coming in to talk to me and my husband about the surgery and to reassure us, as my intravenous "cocktails" started to work. I don't remember much else, honestly. I think I remember being rolled through the hallway. And I think I remember my body being lifted from one surface to another, though I don't know if that was pre or post surgery. The rest of the surgery is like an eight hour parentheses in my life.

I woke up at some point in the late afternoon that day and saw my husband by my side. I had been told by several women who had been through this kind of surgery that I would not be lucid at all until day 2 (or at the very least, until very late on the night following surgery). But I was actually quite with it upon waking. I was able to have a conversation with my husband, which really surprised him, because he also thought I would spend my first wakeful hours thinking I was the Queen of England.

I remember the next few days in the hospital as being quite challenging. Probably the hardest thing I have been through physically in my life, but not impossible. Not HORRIBLE. Just HARD. I think, in my head, I had believed the recovery would be akin to the recovery I went through with each of my c-sections: the discomfort, the stiffness, the exhaustion. It WAS like that recovery, but way more intense. Walking my first steps post surgery felt like I was totally re-learning how to walk. And I had to rely on other people sitting me up in the hospital bed because I had very limited arm function. It was weird. It was tough. But every new little thing I was able to do post surgery was a mini-milestone that was celebrated.

The hardest part of the surgery for me was the itching. Apparently, I don't do well on morphine. Or maybe morphine doesn't do well on me. It took me a while to realize it, but the morphine drip I was on for pain management gave me the craziest itchy feelings I have ever encountered. I begged Chris to scratch my entire body over and over again. When he scratched, I could feel every little sensory nerve on my skin reacting to his touch. But despit the scratching, the itching never really went away, and it made it hard for me to sleep. I asked the night nurses to put hydrocortisone all over my skin, which they did. Sometimes the nurses would just come and scratch my legs for me (which made me love them).

The drains were the other not-so-fun part. I had one drain coming out of each breast, and one drain coming out of each side of my belly. Blood and gunk drained out of my body into the bulbs that hung down from me. I felt like a really gross octopus. When I took my first shower, and saw myself undressed for the first time since surgery, I nearly fainted. It was a lot to take in: the scars, the drains, the scratch marks from all of my itching. But I also noticed my flat belly, which was flatter than it had been in four years (two c-sections) and I noticed my new "foobs," which were now so much less likely to be a harvesting station for cancer.

And as I was lying in my hospital bed, itching like nobody's business, and pretending to be a disgusting octopus,  I kept thinking "I would rather be itching than dying of cancer." Really, anytime I experienced a little pain, a little discomfort, or anything slightly "off" during the recovery process, it was very easy for me to say "this is way better than radiation. This is way better than chemotherapy," and it kept my expectations in check. Saving my own life was not a cake walk. It wasn't supposed to be easy.

I was discharged from the hospital five days after the surgery. Leaving a hospital after being tended to and cared for twenty four hours a day is a scary thing. But the more I got immersed back into real life, the less scary it became. I rested a lot. I drank a lot. And the lovely people of San Antonio fed me and my family very well. Within another week, we were ready to return home, and I was feeling remarkably healed already, just two weeks after surgery.

And now, here I am, eight weeks later, feeling almost completely back to normal. I still have my scars, but to be honest, I kind of like them. Every time I see my stomach, or look at my new "foobs," I see the story of how I made a very brave decision, went through an amazing surgery, toughed it out through a hard recovery, and saved my own life.

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.