A Time For Change

I have always been one of those people who avoids conflict and confrontation like the plague. I grew up in a house where I was the least skilled at arguing and debating, so I didn't bother advocating for myself very much. Instead, I spent my time trying to keep the peace between family members. Later in life, this translated into not arguing with friends and co-workers, not sending food back at restaurants even if it was frozen, and waiting for three hours in a doctor's waiting room before inquiring about an obvious delay in care.

Then I had kids, and I discovered that motherhood REQUIRED that I advocate my kids, especially before they had developed language skills. This helped me gain confidence in voicing my opinion.

Then I learned I had the BRCA1 mutation, and I discovered that I needed to be my own best advocate - in researching the options I had for preventative care, in fighting for coverage for the prophylactic procedures I was choosing, and in finding and communicating with health care professionals. The experience gave me even confidence in speaking up for myself.

I don't like arguing for arguments' sake, but when something or someone is worth advocating for, I now feel justified in fighting a good fight.

The American Cancer Society has just recommended that "average risk" women begin having annual mammograms at the age of 45, rather than at the age of 40. They have also recommended that the annual mammograms continue only until the age of 54, at which time they would take place every two years. They have ALSO recommended against clinical breast exams for all 

These new guidelines make no sense to either my head OR my heart. My heart aches for the many "average risk" women I know who were diagnosed with breast cancer before they turned 45, whose prognosis would have been far more grim had mammograms not been available to them. My head wants to argue the facts: For the past 25 years, the rate of deaths from breast cancer has been decreasing. The largest decrease in death from breast cancer has been among women age 50 or younger. This is largely attributed to the widespread access and encouragement of early breast cancer screenings, screenings which were supported by the American Cancer Society’s prior recommendations. 

This is why I have started a petition on change.org, opposing the American Cancer Society's new recommendations for breast cancer screenings. It is a fight that my heart and mind believe is more than worth fighting. I hope that others will bring their voices, their emotions, and their experiences to this petition, and that a collective voice of opposition to these recommendations will strengthen and grow.

If you are a cancer survivor, if you are a previvor, if you have a relative or friend who has battled cancer, if you are a citizen who is concerned with the influence these recommendations may have on future insurance policies and women's health, please consider signing this petition. 

https://www.change.org/p/american-cancer-society-reverse-american-cancer-society-s-new-breast-cancer-screening-recommendations?recruiter=405271196&utm_source=share_petition&utm_medium=copylink

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.

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. 

 

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. 

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.