Mastectomy 101 Part 1: Let's Talk About Nipples

Warning: This blog post does contain photos related to different aspects of mastectomies.

Update

 Before I write anything about my mastectomy, I must formally thank all of you that have reached out in love and support after my last blog post. Thank you for the kind words and for sending me your positive thoughts and prayers. You have strengthened me more than you will ever know. This world is really such an amazing place, with so many amazing people, and I'm so lucky to have such a great number of those amazing people in my life. Truly, thank you.

As for how I have been doing....I am continuing to attend Eating Disorders Anonymous meetings and therapy on a weekly basis. I have been very blessed to be meeting with my therapist from my time in inpatient treatment, as well as from the years of outpatient treatment following my discharge. It has been a special experience to be meeting with her on a weekly basis again. These past couple of months have been an uphill battle, but I am getting there    one day at a time. My eating disorder behaviors have been mostly under control, although I have had some slips, but the real battle is with the eating disorder thoughts. It really is shocking how powerful they can become after slipping for even just a short period of time. I know others that have struggled with an eating disorder or any other form of addiction will understand what I mean when I say that even with the behaviors under control, the addiction is still there, constantly trying to pull you back into its grips. The longer I fight, the stronger I become. Where I am today is a world away from where I was when I wrote my last blog post and I am so grateful for all the love and support along the way      from those around me, from my Savior, and from YOU     my blog readers. So, again, thank you.  

My Surgery    

My bilateral mastectomy is now only 20 days away, 20 DAYS! After the whirlwind of finding out my genetic test results and making all those difficult decisions about surgery (oh, you know, and announcing it to the world on this blog) I became somewhat emotionally detached from all of it. It's not that I haven't been thinking about it at all or talking about it, but I hadn't really started to process the reality of what I'm actually facing until recently. I want to use this blog post to process some of these feelings, as well as inform others of what is involved in a mastectomy, and maybe help erase some of the social stigma and shame surrounding this procedure. I know that I was very uninformed before being faced with it myself, and now I feel a strong desire to help others understand the process, and get comfortable with all that it entails. Chances are, you know at least one woman who has had breast cancer or has had to go through the pain of a mastectomy. Being informed will help you to be more of a support to those women. My emotions about my own surgery have been all over the place, so I hope that this post doesn't turn into a jumbled mess of thoughts. Well, I guess I'll just jump right into to it....here we go:

Below is a very short video, with a very basic explanation of the different types of mastectomies. Although it is a simple video, it answers a lot of questions that people have asked me about my surgery, so I hope you will take the time to watch it.

Since I am having a mastectomy as a preventative measure, I will be doing the nipple-sparing mastectomy. As mentioned in the video, the main advantage to this type of mastectomy is a better cosmetic outcome. I am grateful for this option, not just for the cosmetic outcome, but for the fact that when I look down after surgery, I will still see part of myself there. I believe it will lessen the feelings of loss. With that being said, the outer skin and nipple will be the only parts of my breasts that will still be 'me', and those parts will only be 'me' visually. As shown in the video, all of the breast tissue will be completely cut out to the skin, and the nipple will be cored out. As a result, my breasts will be numb for the rest of my life. What will be left behind is a very thin and fragile layer of skin. 

Necrosis

Because the skin will be so fragile, and the blood flow so weak, I will be at risk of necrosis for the first few weeks following surgery. Necrosis is the process of the tissue dying. Some women who have a nipple-sparing mastectomy still end up losing their nipples. The nipples die and turn black. Extra surgery is required at that point to remove the dead tissue. Other parts of the outer skin can become necrotic as well, and would have to be removed. Here is a photo showing nipple necrosis:

Nipple Reconstruction

Some women without nipples choose to do nipple reconstruction, while others just learn to live without nipples. I have already made the decision that if I lose my nipples, I will  be doing nipple reconstruction. The nipple is reconstructed using the patient's own skin, and once it is healed, it will be tattooed the color of a real nipple. This photo shows one way the nipple is reconstructed:

I have also learned in my research that some women choose to get a 3D nipple tattoo, instead of doing the actual reconstruction. Here is an example of that:

This photo is from the White Tiger Tattoo website (http://www.whitetigertattoo.com/medical/3dtattooing.html)

On the advice of a good friend, I have decided to blog about my mastectomy in small parts. It is all a little overwhelming for me right now, and I'm sure all the information could be overwhelming to my readers. I guess the theme of this post is: I really want to keep my nipples. That might sound a little strange and awkward, but the fear of losing them gets stronger and stronger as my surgery nears.To all of you women out there reading this    have you ever thought to be grateful for your nipples? With that question, I also have a favor to ask of you    please take a moment and be grateful for your breasts... for your nipples...for those parts of your body that maybe you don't think measure up to society's standards of beauty. Facing what I am facing has brought on a strong sense of gratitude for the way my breasts are right now, imperfections and all. I have 20 more days with these breasts, and I feel the mourning process has already begun. I regret ever feeling like my breasts weren't good enough, or that there was something about them that needed to be changed. So ladies, please hug your boobies and be grateful for them just the way they are. Hey, and while you are at it, go ahead and check yourself for lumps. Instructions here

Recovery

"Fall seven times, stand up eight."

-Japanese Proverb

This blog post is vulnerable. This blog post is scary. This blog post is necessary............

I, Alicia Brown, am in recovery from a severe eating disorder and I am struggling. I have been struggling for weeks. The thing you must understand about my eating disorder is that it morphs and changes over time. It is as if it takes on a life of its own, and when I feel I have one aspect of it completely beaten, that aspect will change into something else entirely. I have had some major stressors this past month, which triggered some different aspects of my eating disorder. Even with 13 years of recovery under my belt, I am still at risk of relapse. Today, I am stating publicly that I refuse to relapse. I refuse to let the eating disorder win. I have been at rock bottom once, and I will never be there again. 

One promise I made to myself while in treatment was that I would never lie about my eating disorder ever again, and I have kept that promise. It is this promise that has saved me from relapse many times, and it is what is saving me now. There are some wonderful people in my life who have been there for me the last few weeks (you know who you are), and who I have been able to openly share my struggles with. Although, I have taken the steps of talking to others, returning to therapy, & returning to Eating Disorders Anonymous meetings, I still feel that I have one foot in the door of recovery and one foot in my eating disorder. My eating disorder is like a very seductive, old friend. It will tell me, "You can just do this for a little while. It will help you cope with these hard things in your life. Then you can just get back on track." Like I've said on my blog before, I do see my eating disorder as a separate entity from myself, and something that continually lies to and deceives me. Remember  THIS VIDEO I posted a while back? It is such a powerful representation of what it is truly like to battle an eating disorder. 

With this blog post I am publicly stating my commitment to my recovery. I am committing to (as an amazing friend stated to me today) "get both of my feet through the door of recovery." Staying in recovery is more important to me than appearing perfect to those around me. Secrecy and shame fuel an eating disorder like nothing else can. So, today I am choosing to drowned out that secrecy and shame by admitting, very publicly, that I am struggling. It would have been nice to paint myself on this blog as some invincible, fully recovered person who no longer struggles, but that wouldn't be real and that wouldn't help anyone   including myself. The fact that I struggle does not negate all that I have accomplished in recovery, and all that I have learned. I have worried that stating my current struggles on my blog would lead others to assume that I don't believe all the things I have written, that I am a hypocrite. I can assure you that everything on this blog has come straight from my heart, and I believe every word. I hope you can see my sincerity in that. I hope you can see my sincere efforts to stay on the path of recovery, and "practice what I preach." 

I love all who come to my blog and support my efforts. I love friends and family who see me for who I am and not what I struggle with. I love my Savior, who picks me up no matter how many times I fall. I love my children, who deserve a mother who never gives up this battle. There is gratitude in my heart today for all this love in my life. I am not giving up and I am not giving in. That is my promise today.

I have never been so scared to press publish before. "Feel the fear and do it anyway," right? 

A Deeply Personal Post: The Day I Realized God Loved Me

There were many epiphanies and awakenings while I was in treatment for my eating disorder, but none were more important to my recovery than what I am about to share. 

About 3 weeks into my stay at the Center for Change, I left one evening for a 'pass.' Passes were a way for us to start  practicing the things we were learning in treatment, and to see how well we could do on our own. On this pass I made, what was to me, a huge mistake. There is no need for me to share the details of this mistake, just that it left me devastated and ashamed. Upon returning back to my treatment 'home' I did not talk about my pass with anyone. Soon it was off to bed, and we all retreated to our rooms. I kept up the facade of everything being fine until my roommate fell asleep. It was at that moment, laying in bed all alone, that the gravity of my feelings hit me. All the progress I had made up to that point felt lost. Hope was gone. Shame consumed me. There had been many dark moments in my life, but this was the darkest. The Center for Change took every precaution to prevent patients from hurting themselves. Very few items were allowed in our rooms, and care techs checked on us every hour throughout the night. My thoughts turned to scheming a way around these safeguards. I wanted nothing more than to disappear. I didn't want to just die, I wished for my very body and spirit to not exist anymore. If there had been a means to do it, my life would have ended that night.  

The last thing I wanted to do in those tortuous moments was talk to God. I believed I was not worthy of his help, his love, or his comfort. My shame made me fear facing him, but there was something inside of me that KNEW I must talk to him. After spending hours wallowing in the darkest recesses of my soul, I finally mustered up the courage to roll over on my stomach, bow my head, and clasp my hands together. My head drooped in shame as I muttered one of the simplest prayers I have ever said in my life, "Dear Lord, please help me. Please, please help me." The words had barely left my mouth, when I felt the tender embrace of my Savior. I had expected to feel more shame when I prayed, but instead I felt the pure and infinite love of God himself. The anguish in my heart was replaced with hope.  He was there for me, and I knew it. He loved me in my broken state. He loved me despite the many mistakes I had made and he would continue loving me as I made mistakes in the future. Up to this point in my life I had believed I was too broken to be truly loved by God. I had thought that he would only love me once I perfected myself enough. It was as if I believed there was some check list I must mark off and then I would be truly worthy of his love. This simple prayer, in my darkest hours, changed EVERYTHING. 

I didn't have all my beliefs figured out at this point, but I KNEW with everything in my soul that I had a Savior. I knew that the Atonement was absolutely a real, tangible gift that he had given me. I knew he had felt all the anguish that I had ever experienced and that he had been there with me through ALL of it. I knew I had a partner and I knew he would never leave me. I knew that his love for me was not dependent on anything other than that I was his creation. Nothing could change that. I knew that the Lord does not work in shame, but in hope. I knew that I would never be perfect, and that the Lord intended it that way--for if perfection were possible I would have no need of a Savior. I did need him. I needed him desperately. I will always need him, every day of my life. Everything I am, I owe to him. I see him, as he is, in all his glory. I see that he, God himself, trembled in pain and agony for my sins. I love him, oh how I love him. He is my rock, my guardian, my protector. And, on that fateful day when I am called home I will kneel at his feet in awe and gratitude of all that he is and all that he has done for me. 

Stepping Out of the Treatment Bubble

OVERWHELMED... that word doesn't even begin to describe how I felt leaving treatment and returning to my old life. I had naively thought that the only thing that would actually change would be my eating disorder. These experts were going to cure me and then my life would go on the way it always had. This thinking could not have been more WRONG. The broken girl who had walked through those treatment doors two months earlier was gone. She had changed to her very core and knew that reverting back to her old way of life would inevitably lead her back to an eating disorder. What do you do when you have become a completely new person, but no one around you has changed? What do you do when you reunite with family and friends and they expect the same person to come back into their lives? I didn't know. I had no answers. I was terrified. All I knew is that I was committed to my recovery and I would do whatever it took to stay healthy.

In the days before leaving the Center for Change, I had written an extensive relapse prevention plan. All throughout treatment, we had been taught what to do when we have a lapse. For anyone not familiar with this term, a 'lapse' is more like a temporary set back rather than a full return to your addiction. It was almost expected that everyone leaving treatment would eventually have a lapse or even several lapses, but that did not mean they had to RE-lapse. Being taught this concept has been absolutely ESSENTIAL to my recovery. Before treatment, I had constantly tried to stop my eating disorder behaviors. Often times I did stop them, for a short time, but the moment I made a mistake I would be right back in the thick of it. One major element of my relapse prevention plan was to never hide my eating disorder behaviors EVER AGAIN. The promise was that if I had a lapse I would tell someone within 24 hours. This promise has never been broken, and it has saved me many times.

I also spent a considerable amount of time writing out all of my 'triggers.' These were things that brought on huge temptations to act out in my eating disorder. I was supposed to find ways to avoid triggers as much as possible, and also to deal with the ones I could not avoid. With all this preparation, I really did think I was ready to take on the world. I had no idea how sensitive I would actually end up being to my surroundings outside of those treatment walls. The Center for Change had kept me so safe, so protected. Other than a few day passes, I had not been in the outside world for two months. I felt almost alien in the simplest of settings (like a grocery store). There were triggers EVERYWHERE and I truly mean everywhere. No place was safe, not even my church. It felt like all anyone talked about was their body, weight loss, what diet they were on, etc. These were all huge triggers for me and I found myself avoiding women in general. It wasn't their fault, and I had no bad feelings toward any of them, it was just the result of the culture we live in. That was what was so difficult. My mind had been filled with this wealth of knowledge about the problems in our culture, but I did not know how to share it with those around me. I tried to, but not effectively. I was too over zealous about it and people were turned off. This led me to the decision to just be grateful for my own knowledge and my new life, and only talk about these things when someone asked. I felt very alone, and longed to be back in the safe bubble of the treatment center. My outpatient treatment continued for several years, but it was not the same. I remember not wanting to leave my therapist's room when the time was up. Just being inside of that building made me feel safe. I didn't know how to move on with my life.

On top of everything else, I was trying so hard to apply the principles of intuitive eating in my life. I plan to share these principles on my blog in the future, but the basic concept is to rely on the body's intuitive ability to crave what it needs. The book also discusses, at length, the damaging effects of dieting on the body and mind. In the beginning of this process, I found myself bingeing on a regular basis. So many nights I would lay in my bed, holding my bloated stomach, willing myself not to throw up, and just sobbing. It was a painful process, but I always took my thoughts back to my dietitian's promise to me that it would work, that I wouldn't always have this desire to binge, that I could have peace with food, and that my body would stay at a weight that was right for me. I had believed her, trusted her, and that trust has paid off  in ways that I could have never imagined.

In treatment I had truly found myself, but being back in my old life made me feel lost. I constantly felt like I was letting everyone down, that they all had loved the 'old' me and didn't know what to do with this 'new' Alicia. Looking back, I know many of these feelings were in my own head, and that it was me that pushed people away because I was scared. My relationships, with the friends I loved so much, were damaged and it took years to heal them. It took years for me to see that maybe, just maybe, these people would actually accept me just the way I am.

My Safe Haven: The Center for Change

I spent two full months in the inpatient unit at the Center for Change. Two months may not seem like a long time, but when you consider how intensive the inpatient program was and how much I CHANGED, it alters your perception of that time frame. My days were filled with every type of therapy you can imagine. We had individual therapy, group therapy, 12 step group, body image group, art therapy, music therapy, recreational therapy, body movement group, life skills classes, intuitive eating classes, and regular meetings with registered dietitians. On top of that we were given regular reading and writing assignments that forced us to probe deep into our core issues. It was exhausting, not just because of how busy we were, but because of the sheer emotional energy it required. 

The strict rules at the Center for Change made it nearly impossible to practice your eating disorder in any form. You were constantly monitored by care techs who called you out on any eating disorder behaviors. The program centered around reaching different phases. Each time you progressed to a new phase, you were given more freedom and privileges. If I remember right, phase 4 was the highest level you could reach (you got to flush your own toilet in this phase!) You had to prove yourself ready for each phase by presenting to the group why you thought you were ready, and then there would be a group vote.  Meal time was pretty hilarious, because there were so many rules that you couldn't even remember all of them, and the care techs were constantly getting after us. There was one care tech we endearingly referred to as "hawk" because she saw EVERYTHING and didn't let us get away with ANYTHING. We were not even allowed to talk about the food we were eating, so we often played games (like 'would you rather...?') during the entire duration of the meal.

Treatment was HARD, to say the least. I spent countless hours in therapy dealing with all of the issues that I had worked so hard to run from. That's the thing about eating disorders-they mask what the real problem is. You take away that mask, that coping mechanism, and the real problems come to the surface. I had gone from being completely disassociated from my emotions, to facing them constantly. Although treatment was hard and emotionally draining, it was also wonderful and life-changing. The real me started to emerge. The women I was surrounded by became my kindred spirits and angels. I experienced a genuine connection with them that I had never experienced before. They knew my darkest secrets and I knew theirs. We came from all walks of life and ranged in ages from young teenage girls to grandmothers. We had different religions, philosophies, and backgrounds-but none of that mattered. We were sisters. My heart will always be connected to these women, and nothing will ever change that. It was like we were stripped of all the labels the world uses to define people and we saw only the person as they truly were. We understood each other, the way no one else did.

Not only was I deeply connected to the patients there, but I became extremely close with the wonderful staff. When I was a patient, the Center for Change was in its early years. It was much smaller than it is now, with only 16 beds. This enabled me to get to know all the therapists, nurses, care techs, and dietitians on a deeper level. Genuine love and compassion exuded from these individuals and I will be forever grateful to all of them. The Center for Change will always hold a very special place in my heart and it was so incredibly difficult to say goodbye.