October and The 24 Hour Candle

First of all, let me apologize for the amount of time that has passed since my last blog post. It’s been a crazy month or two since I got home from my surgery. I’ve been mostly catching up with work that I missed while I was away. I even traveled a few times for work which was quite the adventure after a double mastectomy. This post is not really about my experience with surgery or anything, which will come later, but just some general thoughts and feelings I have this time of year.

So here we are toward the end of October and I just haven’t been able to bring myself to sit down and write anything. Yes, this month is Breast Cancer Awareness, but it also means so much more to me than just the pink ribbon. This is such a wonderful time of the year. The weather starts to cool off (well usually… thanks global warming), tailgating, the fair, pumpkin spice lattes and birthdays for some of my most favorite individuals, including my mother. But since my mother was born and passed away in the month of October, it seems this is the time when I miss her the most.

I try hard to forget details about that day, in the middle of October, five years ago. Things like being sleep deprived, not changing clothes for two days or even shower for four days. I do remember struggling to pick out my mother’s outfit for her funeral and thinking how truly unprepared and unqualified I was to be doing something like that. I remember thinking I have no training to pick out the clothes in which someone is going to be buried. I felt as if I was having one of those experiences where you are watching your life play out in a movie, it felt like a very cruel joke.

Another memory I have is sitting on the front porch of my house a couple of hours after my mom passed away. It was a gorgeous day, leaves turning, chilly in the shade but perfect in the sun. I sat there, sun shining on my face, for what seemed like hours. I think it’s one reason why when we have a beautiful, crisp, sunny fall day in October, it takes my breath away in both good and bad ways.

My mom and I loved decorating for fall. We would buy pumpkins, large pots of mums, hay bales, gourds, and sometimes even corn stalks (yeah we were those people). We lived in an old historical neighborhood that was often part of home tours during the fall and holiday months. It was so funny because it seemed like every year we would be out in our sweats decorating the front porch when the trolleys would drive down our street for the tour. We used joke with each other that we were just a part of the tour showing real people doing everyday tasks. I haven’t been able to bring myself to decorate for fall since. I have good intentions every year, and even got pretty excited about it this year, but I still haven’t done any decorating.

This year was the fifth anniversary of my mother’s death. My father and I light a 24-hour candle every year on the day of her passing. The idea was introduced to us by a dear family friend who shared this from Jewish tradition. It’s called a Yahrzeit candle or “soul candle” that mourners light on the anniversary of an individual’s death. Although my father and I are not Jewish, we loved the idea and felt like it’s a great way to honor her in a way we feel like she would appreciate. This year I was out of town, so my wonderful husband lit the candle for me and sent a picture.

As October comes to a close, I think it’s important to remember that although this month is mostly known for Breast Cancer Awareness there are also about 20 other causes recognized in October, such as National Down Syndrome Awareness, National Domestic Violence Awareness, and Pregnancy and Infant Loss Awareness. What I have come to learn is everyone has a cause they are passionate about, everyone has a story and everyone has something they battle. More than likely this battle has changed them, whether they are vocal about it or not. Whatever your passion or cause, I encourage you to do your homework and make sure the organization you support really is benefiting the cause you care about. I was asked several weeks ago to put together a list of some of my favorite Breast Cancer Organizations; you can see the list I came up with below.

Nationally: 
 Bright Pink- Focused on preventing breast and ovarian. Their main mission is education.
https://www.brightpink.org/
 
National Breast Cancer Coalition
 They have a mission of eradicating breast cancer by January 2020
www.breastcancerdeadline2020.org
 
FORCE- Facing Our Risk of Cancer Empowered.
Dedicated to fighting hereditary cancer. Amazing resources to help women navigate surgery options and understanding what it means to have a genetic risk.
www.facingourrisk.org
 
Young Survivor Coalition
Dedicated to helping young women who have been diagnosed with breast cancer. Most of the people they help are under the age of 35.
https://www.youngsurvival.org
 
Locally:
Oklahoma Project Woman — they help provide free mammograms, diagnostic procedures and surgical services for Oklahoman’s of any age without insurance and limited financial resources.
http://www.oklahomaprojectwoman.org/

A Time to Tear and Mend: Surgery Options

I have mentioned several times in this blog that after learning I had the BRCA1 gene I wanted to do as much research as possible. I wanted to know about all of the surgery options available, even if I knew some of them probably weren’t a fit for me. I needed to know all my options. One thing I learned is that it can get quite technical. My goal is not just to throw a bunch of terms at you, so I thought it might help to give you a visual with the chart below. Although simplified, this chart helps break down some of the exact information I found in my research. If you are beginning your own research, or want to learn what a mastectomy is and what reconstruction means this is a good place to start.

Because I was doing a prophylactic surgery, that is to say, I decided to have surgery before being diagnosed with cancer; my options for surgeries were different than someone who was already diagnosed. I am not saying that I believe someone who has cancer doesn’t have excellent options, it just means that there are some options available to me that aren’t when you’ve had cancer. One of those options would be staying completely natural on the outside of my breasts.

So after all my research was done, I decided on a procedure called the Direct to Implant or One-Step procedure. After seeing what my mom went through when she had a double mastectomy, I wanted to avoid going through reconstruction with tissue expanders. Now granted, if I had chosen tissue expanders it still would have been a different experience from my mom, but one of my goals going in was a less invasive surgery with a quicker recovery time.

I also didn’t feel like flap surgeries were a great option for me. Because I am petite, I don’t have a lot of extra tissue to replace my breast tissue. Secondly, I didn’t like the idea of messing with another part of my body. Lastly, it meant recovering in several different places on my body instead of just my chest. Obviously, this is just my personal opinion. There are a lot of women that prefer this method because it’s seen as the more natural option. Using tissue from their own body, some say the breasts feel and appear more natural. This decision must be based on your own body type and preferences, and for me, I didn’t feel like it was a good fit.

With the Direct to Implant option, I could stay completely natural on the outside. The procedure would only remove my breast tissue, then immediately place an implant along with another tissue type substance called Allodermal Matrix. This tissue, taken from cadavers, does not contain DNA and will not be rejected by your body. Most surgeons will place the implant in a pocket of the alloderm tissue and place it under your pectoral muscles. Some surgeons will give you the option to lay it in front of the muscle, but this is a relatively new procedure and really depends on your activity level. Consideration for above or below the pectoral should be taken if you do extreme activities such as CrossFit or rock climbing. I did not feel like my activity level was extreme enough for me to make a judgment on the issue, so I just left it up to the surgeon.

The other important decision in this process is what surgeon to use for the procedure chosen. I told my husband that it was like planning a wedding all over again. I had the date, now I needed to find the venue! One amazing organization I found was facingourrisk.org, which is dedicated to all types of hereditary cancers. They have amazing resources including a surgeon directory and patient list. The great thing about the patient list is you can contact someone who has had a particular procedure and ask them questions. To me, this was a huge advantage. The most important advice I can give is to talk to as many people as you can. I also did a Google search for “list of Direct to Implant surgeons” and found another great resource that listed out certified surgeons across the nation.

Contacting the surgeon’s office was the easy part in my opinion. I went to the website of locations I was interested in, made sure to read the information they had available and looked through pictures and watched videos. I then used the “contact me” section and wrote out my situation and told them I was interested in scheduling a consultation for the Direct to Implant surgery. Every office I reached out to called or emailed me the next day. I want to go into more detail of the places I visited in a later blog, but it’s important to remember that you are hiring them. This should be about finding someone you are the most comfortable with. It may not be the most convenient or the surgeon you doctor recommends. It is always good to have a second opinion, if only to be able to compare different surgeons and options. With a decision like this, you don’t want to wonder after the fact.

I really don’t want to over simplify the decision making process. There are pros and cons to every procedure. Before I even talked to a surgeon or found out if I was a viable candidate for Direct to Implant, I did four months of research. I made sure to talk to several women with experience and medical professionals. All of this takes time and patience, and I cannot stress enough the more knowledgeable you are the better off you will be and the conversations with the surgeons will be that much more valuable.

I Hate Boobs

Full disclosure, I wrote the following post during a “poor baby day”. My mom would use that term when I was having a terrible day and feeling sorry for myself. Everyone has one of those days when you drown in your sorrows and wallow in self pity. But the deal my mom always made was that you only got one day, after that, you had to pick yourself up and keep on keeping on. So during my first poor baby day since finding out I am BRCA1 positive I decided to write this post, which I have titled I Hate Boobs. Enjoy.

Boobs are the bane of my existence. I hate them. The main reason I hate them so much is because they killed my mother and several other fabulous women in my life. Obviously I know that boobs did not actually kill these women. But in the case of my mom, the cells inside her boobs decided to go haywire and spread cancer all over her body. So, when I think about boobs in this way, I feel like maybe my mom would still be here if it weren’t for her boobs.

I have also always hated boobs because, well, I don’t have any. I understand the grass is greener on the other side, but for a petite girl not to be able to fill out a t-shirt or a bathing suit growing up was not fun. I remember people in high school saying, “Sarah, turn sideways to do your disappearing act” or “Sarah, turn sideways and stick your tongue out . . . now you’re a zipper!” People had jokes. I used to tell my mother she robbed me of two things, height and boobs. When I was a sophomore in college I decided to look into getting a boob job. I researched surgeons and the type of implants, I even went to one consultation. Ultimately, I decided not go through with plastic surgery. One, I wasn’t comfortable with changing something on my body that might hinder my surveillance, even though the doctors assured me it would not be an issue. Because of the history of breast cancer in my family I did not want something being missed down the road. Two, I just decided not to change the way God made me. Who cared if I didn’t have big boobs, I was healthy, in good shape and had a nice body everywhere else. So after that poor baby day in college, I decided to move on from that idea.

So, I have mentioned I hate boobs, right? And here I am AGAIN having to deal with them. I am BRCA1 positive and have decided to have a prophylactic double mastectomy. I always knew I would have a larger target on my back because of my family history. My mother is one of four women, on her side of my family alone, to have been diagnosed with breast cancer. But knowing that didn’t make this any easier. I’m tired of giving this disease my time and energy. I’m tired of having to make all of these decisions about my health because of this disease. I’m so tired of losing people I love because of their boobs. This is my poor baby day, time to pick myself back up, and keep on keeping on.

Never Say Never

My mother had a double mastectomy after she found out she was BRCA1 positive. As I said in a previous blog, she had cancer prior to finding out she had the gene. The doctors had to remove every bit of tissue from her, and then begin the reconstruction process that would eventually leave her looking (at least from the outside) completely normal. This was such brutal surgery for her to endure. The reconstruction phase is such a slow process, filled with lots of follow up appointments. It requires a great deal of patience. I remember thinking there was no way I would be strong enough to do that. While doing research for my own surgery options, that feeling never left the back of my mind. I never wanted to experience what I watched my mom go through. I would opt for a different surgery or maybe forego the reconstruction process, but I would have to do something different.

I remember the first time I heard about someone close to my age getting a prophylactic (preventative) double mastectomy. It was in 2012 when a girl by the name of Allyn Rose, who was a contestant in the Miss America pageant, made waves by voluntarily having a double mastectomy to reduce her risk of breast cancer. Allyn’s family history was similar to mine, she lost her mother to breast cancer at the age of 16 , had seen her mother’s fate and was trying to be proactive about her health. The ultimate goal was to never be diagnosed with breast cancer. I remember watching her on TV as reporters asked her all sorts of “important” questions like, “Was she worried how she look in a bathing suit after the surgery?” and “What this might do to her pageant career?”. At the same time they all called her “brave”, which seemed to come off a little condescending. To me this sounded like a horrible situation to have to go through. I remember thinking at the time I would never voluntarily have surgery, even if I was found to be BRCA1 positive.

And then in 2013, another prophylactic double mastectomy patient made headlines. Angelina Jolie decided to announce publicly that she had the BRCA1 mutation and had made the tough decision to undergo the procedure. I remember reading her article and feeling like she had some really great insight into the procedure. I also felt like there were things she made seem too good to be true. Especially after seeing what kind of things my mother had to go through, it seemed like some of the ugly truths about recovery time and reconstruction had been glossed over by her and the media.

Of course the real reason I thought both Allyn Rose and Angelina Jolie were crazy was because they were electing to do the surgery before being diagnosed with cancer. This was a new concept for me to consider. I had only known the surgery in the reactive sense. People I knew removed their breast tissue because something bad had already happened. I was also quite bitter about the entire process, because having a double mastectomy did not save my mother’s life. I had seen a real life version play out right in front of my eyes. Having surgery in no way equates to being cured of cancer. But to play devil’s advocate, how can you get breast cancer in tissue that is no longer there?

Breast cancer is a complicated disease, and making decisions about how to deal with cancer is very complicated. That is why I have been harping on the importance of having a solid foundation when it comes to studying this disease. You really don’t know what you don’t know. You can have huge advantage just by paying attention to your health and staying proactive. In no way do I believe that women who have elected to have surgery after being diagnosed with cancer, have not had success. And I know that electing to have the surgery before being diagnosed does not mean that person will never ever get cancer. It really just depends on your own genetic make-up, family history and surveillance. Sometimes you just have to take all the knowledge and information you have gained, put a plan into action and hope for the very best.

So here I am almost five years removed from losing my mom to cancer. In about a week from now I’m having a prophylactic double mastectomy. I am completely satisfied with my decision, with my doctors and with the type of surgery I have elected to have. So to that bitter person I was five years ago, I would say, never say never.