Pushing onward

"Sometimes you've got to bleed to know, that you're alive and have a soul".-twenty one pilots Over the years Tyler Joseph's lyrics have brought me to tears more time than I can count. This morning was no different. Zach has been excited, and anxiously awaiting the drop of their new album and it's been blasting through the house the past few weeks. I wraped my arms around Zach and gave him a giant hug, not just because I knew he needed one, but because I needed one too. He will forever be my safe place. As I hugged him those lyrics came on and I sat there on his lap crying. Sometimes it takes some not so happy moments to remind us that we are alive, that life is precious and the one we are living is the only one we've got. While I'm trying my hardest to make the absolute best out of all that's come my way, Im also trying to remind myself that I need to process things and embrace the journey, all of it for better or worse. To remember to Cry, scream, be upset, be confused, be curious, and anxious. To stop allowing myself to be numb and feel nothing at all. Yesterday was a day, it hadnt quite hit me before then that this is really happening. June 16th will be here before I know it. I ordered my surgial bras today. It is both sad and amazing how many sites are dedicated to women who have had mastectomies. Did you know you can buy fake nipples?!? And for those of us that cant afford the $200+ sets of headlights they have cheaper peel and stick disposable sticker nipples for $20!! And something I ran into that left me confused is why they ask for a cup size when buying a post surgical bra..only to be reminded that you don't have an answer to that, because you won't have a cup size for some time. I did get my surgical bra however, it is said to be the best. It has holes on the side for my drain ports and tubes, and a ribbon with a circle to attatch the port bulbs to that will be my companions for a couple weeks. After hunting I was finally able to find 2 recovery bras to wear during the expansion process, ones that would grow with me and give support without needing to know a cup size. I've decided that I won't be getting any breast form inserts as I go through the transitions. I will own my flat chest and embrace being healthy again, free of harmartomas. Only a month and a half to go. #bulletproof

Learning to feel

Today I met with my breast surgeon for the last time before I say farewell to the "girls". The breasts that my 6 year old once jokingly referred to as "sad floppy little potatoes". Truth is, feeding her is what took them to that state, and while they may be sad and they may be little..they are my "floppy potatoes"...for another month at least. Dr Keller and I spoke for a while; we went over my history and decided that it would be best that I have my nipples removed as well. Doing a nipple sparring mastectomy involves saving a thin layer of breast tissue. Leaving any breast tissue behind leaves me at great risk of developing another hamartoma in its place. I have already had one removed right behind my nipple and saving something that no longer has actual purpose beyond cosmetic reasons seems silly on the scale of pros and cons. We spoke for a while and deep down I know this is what I need to do. I have to do this to ensure a long healthy life with my beautiful little family. After my appointment my mom took me to Old Navy and Target where I picked up some button up PJ's, Shirts, and some easy slip on bottoms. I will be unable to move my arms much after surgery so it will be the summer of button ups, and I plan to bring them back and rock the hell out of them!!! ;-) shopping for such an event was surreal. I have gone through all the motions and am working to be prepared, and to have everything in order for my family, yet mentally I don't know how to prepare. I am fine, I was fine, I will be fine..whatever any of that may mean. I'm trying to make all of this seem real, yet I don't know how. It feels like it's all just a dream much of the time. I went through my day, I came home, tucked my sweet princess into bed, sang her the cuppy cake song and held her until she fell asleep. Then I walked into the bathroom and next thing I know my husband was by my side with his arms wrapped around me while I cried on the bathroom floor.

I am trying to remind myself that it *IS* ok to cry. My life is changing, it is about to change, and I will never be the same again. When all is said and done I will be better, I will be healthy, I will no longer have to constantly fight and go through lumpectomies every few months, I will be strong and I will have the wounds of a warrior. I've got this. I HAVE GOT THIS!

A road leading up to here.

I have been traveling down this road for almost a year now. Always putting one foot in front of the other going about life while sweeping the rest under the rug until appointments come around. I am still trying to figure out if this is a good thing or not. The truth is, life is short, so why not live in the moment?? So often people tell me that I am an inspiration to others, that I am strong and that I handle things better than most. I have always questioned such statements. Sometimes I feel anything but strong. I have days where I literally feel like I am drowning, holding on for all I have to catch my next breath. Thankfully those days are few and far in between. Truth is, this is my life, this is what I was blessed with. I will continue to live my days like the gifts they are with those I love most by my side. This past year has been a whirl wind of emotions. I will never forget that morning last May that I randomly decided to do a self breast exam in the shower. It had been some time since I had felt the tata's. Being 26 at the time, it was something I rarely thought about. I did my right breast first and remember feeling sick to my stomach as soon as I felt it, a nice baby carrot sized mass hidden on the edge of my breast. I remember feeling numb, as if I was a part of some bad dream. I was in denial, not wanting to believe what I felt to be true. My husband was sound asleep, preparing for his shift that night, so I didn't want to wake him. I texted one of my best friends, re-feeling the mass waiting for response. It was still there, it was real. I remember shaking my head no and feeling frantic. I underwent 2.5 years of heavy infertility treatments to conceive our beautiful miracle. I knew what the high levels of estrogen put me at risk of, and as any women naturally would, I thought the worst. My husband woke up hours later and asked me what was wrong, I have never been good at hiding things from him. With him and our precious miracle by my side we started the journey together. First thing I did was meet with my primary care physician to have the mass confirmed. She felt it immediately and decided it would be best to have a mammogram and ultra sound done. My mother in law came with me the day of imaging. I was so nervous that I had forgotten my ID and insurance card, realizing I had drove an hour without them. The mammogram, though uncomfortable, wasn't quite as bad as I had expected it to be. After they smashed, squished, and pinched all they needed I was taken to another room for the ultrasound. They have you lay on your back/side with a triangular wedge pillow just under your back pushing all breast tissue forward. The go over and over the suspected locations taking pictures of the breast and any abnormalities that may be hidden within. They focused on the location of my mass, grinding the ultra sound wand over it time and time again, with no luck of catching a glimpse of it. I will never forget the pain of them grinding over it trying to get it to show. The radiologist concluded that I was just fine and had nothing but healthy breast tissue. I was annoyed and confused by the findings. How could a mass that could so easily be felt not be seen on imaging?? I contacted my primary Dr and expressed my concerns and she agreed it would be wise to seek another opinion. That is when I was referred to my breast surgeon Dr Keller.

I immediately fell in love with Dr Keller. I always felt that she was a strong advocate for me and my breast health. She found my mass right away, broke out her fancy measuring tools and assessed my lump, that had since been named "Casper" and decided that a lumpectomy would be the best course of action. During this time I was only a few weeks away from running my first half marathon, something I had spent months training for. While she felt it was important to have "Casper" removed, she didn't see any harm in waiting a bit, so we did. I finished my half marathon in just under 2 hours and placed 4th in my age division. It was one of the most exhilarating things I have ever done, and the emotions I felt as I crossed that finish line are ones that I will never forget. I am thankful I didn't give up on that goal. A few weeks later it was surgery time. I was excited to finally be able to have answers and be able to put this behind me. Thankfully Everything went smoothly, Casper was evicted and sent over to pathology.

A week later I met with Dr Keller for my post op appointment. The site was healing beautifully and everything looked well. The pathology report came back stating that "Casper" was what was known as a benign hamartoma. I remember this day as if it was yesterday. I literally couldn't stop crying. When the going gets tough my fight or flight system kicks into over drive and I push things aside, so far aside that I forget they are even there. Perhaps that's why I seem so strong to others? Once I received news I was going to be ok the dam broke, and I couldn't stop it. I felt so many different emotions that day but most of all I was thankful. I was ready to put it in the past and continue on in this beautiful life I had been given. Dr Keller gave me the ok to to run the annual Reagan Run 5k just 2 weeks post lumpectomy. I bound myself in an ace bandage beneath my sports bra to help with the discomfort I was about to feel. Nothing was going to stand in my way.

After you have a lumpectomy they typically like to see you for a 3 month post surgical follow up to see how you are doing, and to monitor any breast changes. I had become very aware of the importance of self exams and began doing self exams weekly in the shower. It was in September that I found another mass in my right breast, and a large mass that took up much of my left breast. I was hoping it was only a figment of my imagination. Perhaps scar tissue or fiber-cystic changes?? I Met with Dr Keller and both masses were confirmed and we proceeded with the standard routine of mammograms and ultra sounds. Just as my first time down this road, nothing showed on either imaging test. Because both masses fit the same shape criteria of hamartomas, we were pretty confident in their diagnosis. On December 30th 2014 I had a double lumpectomy to remove both masses and later pathology reports came back positive for hamartomas. A breast Hamartoma is an uncommon lesion composed of a number of native tissues growing in a disorganized way accounting for 3.9% of all breast tumors. Although hamartomas are usually benign, malignant transformation is possible. Breast cancer arising from a hamartoma has been reported. Because there is little known about hamartomas and they are often underestimated, the preferred treatment method is surgical removal. The reoccurrence of these rare masses raised many questions and concerns. The idea of something bigger going on, such as Multiple Hamartoma Syndrome was the only thing that made sense. Being that I was now only 28 my surgeon didn’t want to jump to any major life choices and decided that it would be best to continue with 3 month followups to watch any breast changes that may occur. It wasn’t even two months later that I had developed yet another mass. I met with my surgeon and the mass was confirmed. This was the 4th hamartoma in a 10 month span which pointed more at the idea of Multiple Hamartoma Syndrome/Cowden’s Syndrome. Cowden's is an under-diagnosed genetic condition which predisposes to development of hamartoma tumors. Lifetime cancer risks associated with CS are: 85.2% for breast cancer. While there is no treatment for the condition, preventative measures can be taken to help eliminate risks. My surgeon suggested that I have a double mastectomy due to my incidence rate. As hard of a choice it was to make, I understand it is what's best for both myself and my family. I left Dr Keller's office that day with a pamphlet full of information and the names of recommended plastic surgeons. I was told to do some research, and check with my insurance about in network providers, and call once I had picked the plastic surgeon I wanted to go with. I did this as my mom drove me to my next appointment. I had a pre-op physical to get to in preparation for the hysterectomy I had to have the following week. I remember crying, telling my mom "I am not ok". I have been struggling with how to properly deal with everything. I feel alone, and afraid, and that my tears are unjustifiable. I have told myself that because I don't currently have cancer, that I am not allowed to hurt, but that isn't true. While I may not have cancer, I am predisposed. I am human, I have feelings, and they are valid and it is ok to hurt or even crumble during such times. And I did.

I met with my plastic surgeon and immediately fell in love with her. She answered all my questions and walked me through the step by step process of the months to come. While I have a long road ahead of me, I am in the hands of some pretty amazing dr's and I have the most incredible support team a girl could ask for. I received the call the other day that my insurance has deemed my mastectomy as medically necessary. I will be saying tata to the tata's on Tuesday June 16th at 12:30. I have started this blog as a way to raise awareness, to remind others that age doesn't matter, and that there are so many other diseases and conditions that effect breast health. I will be sharing my feelings, experiences, and photos of the good, bad ugly of every step of the way. I am determined to make this something positive and help others, if only one, feel less alone, because I remember feeling nothing but. Here's to being bulletproof.