I started this blog to document my surgeries.
My first written post on this site was to announce my choice to undergo a preventative double mastectomy at age 23, after being married for a little over a month. You can read that post HERE. I loved sharing my journey on this little blog and continued with updates which you can find... here, here, AND here. I took a break from writing after announcing my doctors found a softball sized cyst inside one of my ovaries after I already had multiple surgeries on my chest + an unplanned pregnancy. To be honest, I didn't know what to write or share because I was incredibly discouraged. I had to take a break, or hide from it all... for a bit. I was in shock.
Anddd to be honest, I am currently in shock all over again... after months of ignoring some abdominal pain I went to see my doctors for a sonogram. I told him it felt like a cyst again, which last time my cyst grew so large it was classified as a tumor by the end of it, so they were eager to get me a sonogram asap! Sure enough, on my one and only ovary... I had a cyst rupture and currently have multiple cysts under observation. We are hopeful these won't grow to be as large as the other, and they are currently far away from my ovary's blood supply. At this point, I have made a decision to stay informed, stay proactive, and continue to share my experiences in hopes it will encourage others.
I have recently been in conversations with a lot of people who want to hear my entire story, or be able to read my story in full! This is crazy to me, because for so long this was my current life... it feels SO weird to be on the other side of it. After a year of no surgeries, I have been refreshed and seemingly been given a new lease on my soapbox. So here I shall stand.
My dad lost his mom when he was 2 years old. She had 5 kids with my grandfather, and lost her fight with breast cancer at age 43. Her mom, my great-grandmother, died at 38 from breast cancer. My dad was in college when one of his older sisters, Susan, passed away due to breast cancer at age 33. I was named after my Aunt Susan, whom I never met, but I carry her name as my middle. She passed away and left behind 4 children who are my cousins. Since my Grandmother and my Aunt, there have been no deaths in our family due to breast cancer. We are so grateful for this, but no one takes that lightly. My cousin battled breast cancer and survived, while the remainder of my dad's sisters underwent preventative and protective surgeries to insure a long and fear free life.
To be clear, getting a double mastectomy as a proactive choice was always my plan. It just happened much sooner than I expected. Testing positive for the BRCA gene mutation expedited everything for me, especially after they found lumps.
August 2013 :: My husband, Tyler, proposed to me in the greatest proposal of all time. You can watch it HERE. He let me dance while he sang a simple song he had written at 17. He dropped to one knee in front of the entire kids camp we were both teaching at in Houston, TX. In the midst of wedding planning, I made my first appointment with an OBGYN who recommended I participate in the genetic test for a mutation of the BRCA gene. When the BRCA1 and BRCA2 genes are working properly, they prevent tumors from forming by producing proteins that help maintain DNA function. When these genes have a mutation, the DNA cannot be fixed and raises the risk of cancer. Because of my family history and my positive BRCA gene mutation, my chances of getting Breast Cancer before age 30 raised to over 85%.
BE BRCAware! 47% of women with BRCA-mutated cancer have no family history of breast, ovarian, or fallopian tube cancer. Mix that with the fact I am a 4th generation girl with cancer running in my family by women on my father's side... and you get the perfect storm.
I tested positive for the BRCA gene mutation, which immediately caused most of my family members to get tested as well. Some of my family is BRCA positive and some are not. This means that we have the BRCA gene + another unidentified mutation going for us. We don't know if my grandmother or aunt were BRCA positive because this test didn't exist back then!
FEBRUARY 2014 :: After finding multiple lumps in my chest during an MRI, I underwent a biopsy on my 23rd birthday that revealed the lumps to be benign. Woo hoo! Even though my lumps were benign, I continued to pursue plans to undergo a Bilateral Double Mastectomy. After seeing multiple specialists, geneticists, plastic surgeons, and oncologists. I felt immediately drawn to my Oncologist at Texas Breast Specialist. She was super on board with me getting this surgery as a prevention, which isn't always the most popular choice. She said with my family history and BRCA results, I could either do this surgery and not be able to breast feed my kids... or face the fact that one day I might be getting chemo while my kids were home with a nanny. Harsh reality? Maybe.
But it resonated with me, and from then on I knew this was the right decision for me. Besides, I didn't want to start having kids for at least 5 years... so the idea that lumps could continue to grow and develop wasn't something I was at peace with. Breast feeding my future babies seemed like a very distant thing, so I made the decision to get rid of my breasts at 23...
MAY 2014 :: 45 days after the most perfect wedding, which you can watch HERE and see our first dance to "Mirrors" by Justin Timberlake HERE... I had a prophylactic double mastectomy procedure. My new husband, mom, dad, mother in law, and aunt waited in the lobby for me. My aunt waited in the lobby as her 23 year old niece, little old me, had the same surgery she had in the 80s after burying her 32 year old sister. My aunt and I have always had a very special relationship... as a kid I would get to go spend a week with her each Summer. It's no secret that my aunt had a double mastectomy in a time when the surgery as a preventative measure wasn't popular or glamorous. I'm grateful that I grew up swimming in her pool under the stars, eating pop-sicles while she told me about the scars that covered her upper back.
I think it was then, I started realizing that I would make a choice one day like my aunts did. I wanted to give up a little bit of vanity for the peace of mind that my body would not have a ticking time bomb living inside me. I wanted scars like my aunt had. Those scars meant and mean that breast cancer will not end her life sooner than intended. Those scars meant she took control, before cancer could. Those scars meant she picked a fight with cancer first, so that she wouldn't have to fight and possibly lose her life to it. I wanted those scars, I was at peace with those scars since I was 10 years old. (or at least I thought)
SUMMER 2014 :: My husband and I had been married 45 days... and then he had to wash my hair in the sink, track my medications, sleep on the couch, and make sure I didn't disappear into a hole. I had spent the past year of my life practically preaching to people about being proactive and taking control! How could I be upset? How could I be scared? How could I grieve when I had shared with the world why everyone should do what I'm doing. I was horrifyingly sad, and in denial about the whole thing. We celebrated our 2 months of married life in bed eating, not talking, and hoping one day we'd have something to celebrate again. I was destroyed by how I looked. I looked like him, only less like a human with huge scars across my chest. Of course my scars were nothing compared to my aunt's... another thing I felt guilty for. I insisted on dancing... while having tissue expanders in my chest cavity. It was like sand paper rubbing against my insides every time I took a deep breath, let alone dance. I continued to push. I had to.
I documented it. I had pictures taken that I've still never showed anyone. I wrote about as much as I could... but in reality, I was a newlywed that was terrified my husband would never look at me the same again. And what did "same again" even mean?? We were hardly married. I was terrified I would never dance the same again. And I don't, but now I'm okay with it. I'm at peace with the fact I can't feel half my chest, if you poke me under my arm pit I definitely can't feel it, and if you ask me to do a floor section in a dance... I'm most likely going to complain about it. Some thing's might go back to how they were but maybe not. And that is okay, because the peace that I have is worth the bouts of body image issues. My recovery time between surgery #1 and surgery #2 was the hardest. Tyler was working full time, I was on a teaching break for Summer... and my identity was disappearing, while my body was unrecognizable. It was a blast!
[ PREVIVOR ]
A SURVIVOR OF A PREDISPOSITION (OR INCREASED RISK) FOR A DISEASE SUCH AS CANCER.
AUGUST 2014 :: Reconstruction Day! August 23rd, 2014... aka Christmas freakin' Day. I would finally be able to sleep on my stomach, wear normal clothes again, and be free to work out and get back into shape! We had been on "pause" for the 5 months of our married life... I was ready to pick up right where we left off! Back to just us. We were free to start our lives! It was the best day ever, I was just so excited to get those stupid tissue expanders out... and nice soft implants in! I mean really! I was so eager to start adjusting to something that was long term, instead of short term and temporary. I had been grieving how I looked for 3 months, I was ready to "get used to" something that would be that way forever. I was excited! We were excited! Everyone was!
The doctor told me he couldn't operate. He told me I would not be getting reconstruction that day. He told me and my husband that we were 4 weeks pregnant due to the blood they test before any major surgery. I was in shock. I didn't know how to respond. I was upset, but I knew I should be happy.... so then I felt guilty and unworthy, and then it all spiraled. I looked at my husband crying tears of joy with the biggest smile on his face. I wanted to crumble. I was in pain. I looked like someone I didn't know. I was someone I didn't recognize. I wanted to be me again. And now I'm going to be a mom? I chose to get this surgery because I didn't need to take care of any little humans for a long time. Or so I thought...
May 2015 :: After a 9 month pregnancy with tissue expanders, I gave birth to a little girl name Bravery Dylan. She is the seal upon the season I have written about above, and she has proven me wrong about every limitation I thought I had. I didn't think I could nurture. My personality was too rigid, too harsh, to forward. And then I didn't even have the body parts that most women use to bond with and nurture their baby. But... Bravery was born, and in that moment I became a mom, and I became the mom that Bravery needed. She is my destiny unknown and a dream realized.
When Bravery was 1 month old, I made an appointment with my plastic surgeon to set up my reconstruction again. He met with me, and told me I had to wait. He told me to be a mom. He asked me to let my hormones level out, and rest. I was upset... because I really wanted to be done with this process! But in hindsight, he was definitely right. I needed time. I went another Summer dancing and working at my job... with tissue expanders grinding on my muscles. Only this summer I had a 2 month old. I was grieving what my eyes saw from my surgery and now what my eyes saw from carrying a life for 9 months. It was incredibly hard for me to accept myself and how I looked. What had happened? Had this been a bad dream? But I have my health... and I have Bravery... this can't be bad. But why did I feel so bad? Time did its job and healed those questions and thoughts. But time also outdid itself and healed my body, which healed my mind and doubts.
"Is it really elective surgery if the alternative is cancer?" - a previvor
August 2015 :: Almost a year to the date of the originally scheduled surgery, I finally underwent my reconstruction. Healing from that was hard, I couldn't pick up my baby for 6 weeks. Accepting that the process was over was equally hard... did I make the right decision? Did I look okay? Would I ever feel like me again? I had to grieve how I had looked for the first 17 months of my marriage. Everything changed, all over again. I had to accept my reflection, my capabilities and handicaps, and all new insecurities. It was hard doing those things while navigating becoming a new mom! "How did I get here again?!" My life was almost unrecognizable.
During my pregnancy my doctor found a cyst on one of my ovaries. The BRCA gene mutation not only applies to breast cancer... but also ovarian cancer. My aunt's have also all undergone preventative surgeries in regards to ovarian cancer, but that was at least a decade away for me. After Bravery was born and after my reconstruction, my doctor wanted to check on the cyst since he could see it more clearly now with my uterus shrinking back. The cyst had gotten INSIDE my ovary and was now the size of a softball. He immediately sent me back to Texas Oncology. Only this time I met with an ovarian specialist, down the hall from the breast specialist. It was at this point a haze fell over me and my entire situation. I found no joy in telling people to take control of their life... because when I chose to do so, my life spun out my control more than I ever thought possible. I prayed and asked others to pray that the cyst would shrink, or even disappear! But that never happened. Of course it didn't.
October 2015 :: After begging my new ovary doctor to give me at least 4 weeks in between my last surgery... I had my ovary and fallopian tube removed on my left side. The ovary wasn't salvageable because the cyst was inside. My ovary was stretched out like a balloon basically. They poked and prodded through my stretch marks from carrying Bravery, creating new things for me to get used to and accept all over again. I couldn't lift her for another 6 weeks. And then I stopped updating people about my process and my surgeries because I was just angry. I was confused why this was happening to me.
I didn't want to be a mom yet, so I chop off my breasts, then I get pregnant, I go through my pregnancy in extreme discomfort, I give birth to my baby and become a mom, I like being a mom... I want to have more kids, then I have a threat effecting that option... right after I finally get reconstructive surgery on my chest. This just can't make any sense! After all of this, my husband and I start fighting for our family. I accepted a full time job, we pursued help from other places... and life started flowing through our home again. It was an amazing time where we felt like we were taking back ground or reclaiming our territory! We have grown as a married couple, as parents, and as co-workers.... God has been so gracious and faithful to us.
I almost went an entire year without any surgeries and then I noticed I had pain on the other side of my body. I ignored it at first, I thought, "this can't be happening". And sure enough, it was.
AUGUST 2016 :: I notice that I have pain on the other side of my body. The side that DOES have an ovary. My only ovary. I ignored the pain at first. I thought I was having phantom flutters from carrying a baby? That's a thing right?! And then i thought it was just a stomach ache. Eventually I told my husband, I had been avoiding it. We called the doctor first thing and I told them to just go ahead and schedule the sonogram because I knew it was a cyst. I had been in pain for weeks and just had this feeling in my gut something wasn't right. I know a lot people get ovarian cysts all the time. It's normal! Some people feel them rupture and it's no big deal to them. But for me, I have one ovary left. Only one. And the last cyst I had quadrupled in size and made its softball sized home inside my ovary. I'm a little protective, can you blame me??
My sonogram found that I had fluid from a ruptured cyst, along with multiple cysts nearby my ovary. Nothing is currently affecting the ovary's blood supply. Which is GOOD news. But, I have to be proactive. I have to be responsible. I have to be informed. Because this is my body, and this one little ovary is all that I have left. I am currently planning on having sonograms every 6 weeks until these cysts shrink, rupture, or get big enough that we schedule a surgery. Hopefully the last isn't the option.. but I have to steward my body and this is the best way I know how.
After being tested BRCA positive... I did my part. And now my body isn't necessarily returning the favor with these cysts, so we go again. I'm not going to shrink away because I'm in shock. It is what it is. This is my reality. Prayers answered or not, I'm going to always encourage women to take charge. Take control. Choose life, fight for life. Be aware. ACTUALLY BE AWARE. Don't just wear pink or slap a ribbon on your car... being "aware" means you know what the scars look like and you know what they mean. I encourage you to know your family history, and get tested for the BRCA gene mutations so that you can take control of your health and wholeness.