“You’re so young.” “You have nothing to worry about.” “Try not to think about it.”
These are phrases I’ve heard over and over again from my friends when I would talk about my fear of getting breast cancer. But I’m not so young – I’m about to turn 38 – and I do think about it so it’s impossible to not worry.
Which is why, at the age of 37, I’ve made the decision to have a double mastectomy.
Here’s my story:
Back in 2015, I was at a check-up with my obstetrician. She asked me if I wanted to take the BRCA genetic test to determine my risk for developing cancer. I was still grieving the death of my Tia Frankie, my beloved aunt who was diagnosed with breast cancer at the age of 39 and passed at 45 years old. My doctor had been encouraging me to take the test for several years and I would respond with, “I don’t need a test to tell me I’m getting cancer. I know I will.” I was 34 years old and she caught me in a moment of weakness so I finally said yes. A few weeks later, the office called and asked me to schedule an appointment to discuss the results. (You know it’s not good when they ask you to come in.) There it was, in bright bold red, science confirming my worst fears:
Specifically I carried the gene that indicated I was a high risk for breast cancer. I started shaking looking at the piece of paper. In my mind, I thought of my aunt lying in hospice, standing at her side helpless as I watched her life leave her body. I could see my niece in bed with puffy eyes and tissues in her hand the night before the funeral. I remember holding my cousin, her youngest daughter in my arms as her coffin was taken to the hearse. I know the profound and deep affect that cancer inflicts upon a family. And all I could think was that somewhere in my body, there were cells currently lying dormant that would one day awake like a beast and wreck havoc upon my body.
I left her office crying. I threw the results in my car trunk and placed them over my spare tire. Out of sight, out of mind, right? The next time I’d see those results would be in the event of a flat tire and I’d remember to tell myself, “Hey, it’s only a flat. It could be worse – you could probably have cancer.”
The recommendation was to have annual mammograms and CT scans. For most women, they do this starting at the age of 45 but I was higher risk so I needed to start earlier. When I went in the first time, I broke down in tears and the nice technician doing my images consoled me. At the CT scan they gave me Valium to try to calm me down…it didn’t work. I jumped up from the table and had a panic attack. The nurse commented that she had never seen someone move so quickly after taking Valium. These tests made me hysterical and I felt like a ticking bomb. I decided fuck that…I was done. If cancer is coming for me, there’s nothing I can do. I didn’t need to put myself through that stress.
Then, on Halloween weekend in 2017, I noticed a small mass on my left breast. My heart started pounding and my stomach dropped. The first thing I did was call a friend from college, Nicole, who is my age and a breast cancer survivor. Her advice to me was, “If it’s not normal, go get it looked at.” I went in to get it checked out and had another panic attack. They performed both a mammogram and sonogram, which gives you a better visual of the inner-working of the tissue. The technician was kind and asked me about my aunt as tears rolled down my face. I got the results and I was fine – just a cyst. But the sonogram detected clusters of cells, several in each breast, and because of the gene they have the potential to become cancerous. She recommended bi-annual mammograms and cancer screenings a year. TWO? I can barely manage one! I didn’t go back for my six month follow-up and when October 2018 rolled around, they called me and reminded me it was time to come in. It had been a year.
I thought burying the results in my car would make me forget. I thought living my life and not letting the genes in my body determine my happiness would let me move on. But every once in a while, I would wake up in the middle of the night, sit up fast in my bed with my heart racing and difficulty breathing. I was having a panic attack and I realized it was the exact same panic attack I had that day in the hospital at the CT scan. Subconsciously, it was taking a toll on me. My quality of life had been severely impacted and no matter how hard I worked to ignore it, those emotions lay dormant just like my cancerous gene.
I’m very lucky and incredibly blessed: I have a great job with amazing benefits. I have a team I’m so lucky to work with everyday. I have an incredible support system of friends I can lean on and are always there for me. I can reach for my phone and dial up just about anyone in my contacts and, even if it’s been years since we’ve spoken, I know that person will talk to me like no time has passed. I have a loving family that has been through hell together and we’ve come out stronger and closer.
I look at my nieces and nephews and my heart bursts with love. I’m doing this for them. I want to see them grow up. I want to be a part of their achievements and witness their milestones. I want to see what types of people they’ll become and what they will do with their lives. I adore those kids and I know how much they love their Aunt JJ – they tell me every time I see them. I don’t ever want to inflict the pain and suffering of cancer upon them; they’ve already been through that with another aunt.
But mostly, I’m doing this for myself. I want to take back control of my body. When I got the genetic testing results, I felt like my body had betrayed me; like it was tainted. I had a shift in my mindset to thinking it was no longer a matter of “if” I would get cancer but more “when.” So I’m taking charge – it’s my body and I want it back. That’s why I’ve decided now is the time to take measures into my own hands and have this operation. If there’s a way to beat cancer to the punch, let’s do it. I’m ready. Terrified but ready.
I appreciate everyone I’ve already told and those who listened to me as I went through the decision making process. Now the really scary part is beginning. I’m fortunate to have so many friends around the world and I want to keep all of you in the loop so I’ll use this blog to keep you updated. Surgery is scheduled soon and I’ll keep you posted on what’s ahead for me.
Thank you and God bless.