Kellie, 47, is a married, mother of two, BCRA1 previvor and the daughter of a two-time breast cancer survivor. From Fayetteville, Georgia, Kellie recently had a mastectomy and a hysterectomy (2/21/2018) and is excited to be on the other side of recovery. She enjoys traveling, thrift store shopping and listening to Sam Smith while doing homework. She is currently working on her doctorate and excited to share her experiences via her blog (browngirlandbrcaplus.com) and Instagram.
Several years ago, after learning of my mother's second breast cancer diagnosis, my primary care physician recommended that I get genetic testing done. “Right! I've heard about that. The Angelina Jolie test, right?” It sounded like a great idea at the time. He shared the information with me and it got lost in the crevices of my car seats somewhere.
Fast forward five or so years, and I had an annual exam with a nurse practitioner who asked, if I had ever considered getting genetic testing. “Right! I've been meaning to get that done. The Angelina Jolie test, right?” I reviewed the packet that day and decided to have my blood drawn to be tested. The nurse practitioner assured me that once the results came in, they'd mail them to me. And then she called. She asked that I come in instead.
I braced myself during the appointment as she shared the results with me. She explained my options to me, and shared her professional and personal opinions based on the results. The tears showed up without me realizing it until she shoved the box of tissue my way.
”Wait. Why am I crying? This is so dumb. I don't have cancer. Pull it together. I'm so sorry. I don't know what I'm doing. Why am I letting numbers make me cry? It's a percentage, not a diagnosis. You're okay. Get your life!”
It took me a while to decide what I wanted to do (after talking to God, my husband, my parents, my primary care physician, my breast surgeon, friends), but I felt thankful that I had been given a chance to make a proactive decision. How would I feel battling breast and/or ovarian cancer knowing that I had a chance to prevent it? Alternatively, how crazy is it to have the surgeries without ever knowing if either would happen?
But, who knew that having a double mastectomy would leave my Google search history in shambles? I scoured the internet before my surgery, but it's crazy — there are still so many things that you don't even realize are a “thing” until your body feels weird and you're trying to figure out all the things! Like, "Why can I feel what I'm drinking after I drink it after a mastectomy?" My first cool drink after surgery blew my entire mind! Why doesn't anyone tell you that your chest will feel like a pipe? Why is this not widely shared?
There should be a classified briefing before surgery that highlights questions, like "Why are my underarms itching like crazy?" I legit went through three different types of deodorant before I figured out, "Oh, this must be a mastectomy thing." I thought that I had developed an allergic reaction to the deodorant I'd been using and kept switching things up. So, my new normal is swapping deodorants and scratching my underarms uncontrollably during social settings. "Sorry about that, I think it's the surgery" is my go to response for pretty much everything.
I've spent hours searching for answers to questions like, "What exercises are best to increase arm span after mastectomy?" Things that I used to reach with ease, I now have to use a step stool because I can't extend my arms the pre-surgery distance. I walked around with T-Rex struggle arms for weeks! I'd have to ask random people in the grocery store, "Can you grab that for me?" and I know they probably thought I was some lazy weirdo. I wasn't even embarrassed. When you need Tide pods, you need Tide pods. *shrugs*
I also think the classified brief should inform all of us newbies that our breasts can be subjected to random show and tells. I wasn't quite prepared when a family friend pulled up her shirt to show me her mastectomy scar and then turned to me: "How do yours look?” *thinks* Wait. I haven't seen you since college. Is this what we're doing to catch up?” All of this while my mother is on the opposite side of us comparing her scars too! What a great welcome to the sisterhood.
Every day is a new adventure as I work to understand my new body and its post-surgery limitations. Just when you think you've gotten everything figured out, you get your head stuck in a hoodie and have to be pulled out by your husband. Trust me, there's never a dull day. I'm grateful for the quality time that me and Google have shared together. I would've felt crazy asking anyone else some of these questions. My random Google search entries usually render tons of results with people wondering the exact same thing, which is oddly comforting. While this experience is uniquely mine, it is good to know that I'm not alone and there's a sisterhood that understands all of my crazy concerns.
When I went in for my annual exam in October, I had no idea how different my life would be six months later -- but it’s different in all the best ways. This experience has shown me how great my friends are, how supportive my job is, how tender my husband can be, and most importantly, how rich and awesome this amazing life is! I am so thankful that I was given an opportunity to make an informed and proactive decision.