By Rachel Samuels
When I was diagnosed with the BRCA mutation in February of 2019, I knew I would have to get a double mastectomy. At that moment I could not pinpoint when a good time would be. Maybe after I get married? Maybe after I have children? Maybe when my kids are older? I was not ready to make that decision.
As months went by, I took measures to help myself physically and emotionally with the news. I got my annual MRI and made an appointment with an oncologist to discuss my options. I also decided to start training for the 2019 NYC marathon and raise money for Sharsheret- an amazing organization that helps women and their families face breast and ovarian cancer. The clear MRI was a huge relief, and running a marathon validated that I was healthy and in control of my diagnosis. However, I still needed to deal with the reality of my BRCA mutation.
My fiancé and I set up an appointment to go see my oncologist for the second time. There I decided that, in the summer of 2021, which would be months after our November 2020 wedding, I would have my double mastectomy. I felt better knowing that we had a set timeline that I would only have to do the intense surveillance for another year. Then we can move on with our lives!
However, 2020 had other plans. When COVID-19 first entered the United States, I really didn’t think it would affect our wedding date. It was March and our wedding was in November. This will certainly be done within 8 months! Yet as schools closed and large gatherings were being shut down, my fiancé’ and I realized that postponing our wedding would be the most realistic and safe option.
As much as it was a bummer that the wedding date was changing, I had something bigger on my mind. How was I going to get my double mastectomy in the summer of 2021 and then get married in November? Would I recover in time? What if I had complications? My entire timeline was turning upside down. I felt like I was losing control and my anxiety was through the roof.
Then, I had a crazy idea. Why don’t I just have my surgery this summer?
You may be thinking, “This woman is insane! We are in the middle of a pandemic! Why would you want to enter a hospital by choice?” Great question. I am a special education teacher at a public school in Manhattan. Having to take off work during the school year is a huge undertaking for a teacher. Organizing sub plans and coverage is more work than actually being there! Plus, I love my job. And now that our students are remote learning, I don’t want to miss a minute of in person teaching when we are back in the classroom. Summers, for me, are the only option.
Another question you may ask: “Why don’t you just wait until after the wedding to get your surgery?” Well, when you are diagnosed with the BRCA mutation, you are given a timeline. Breasts off by age X, have kids by age Y, ovaries out by age Z! Now that the wedding date has changed, I adjusted my timeline in the hopes that the rest of my plans go as anticipated. This enables me to feel more in control of my BRCA mutation, at least in some shape or form.
I describe having the BRCA mutation like this: Let’s say a bee lands on you. It may sting you, it may not. You could just leave it and wait until it starts to hurt. But wouldn’t you just rather get it off? That’s how I feel about getting my breasts removed. I totally understand that not everyone with the BRCA mutation feels this way. And that is ok! Please know that your reasoning is valid. We are all different and cope in various ways, and we should not judge one another based on the path we choose.
Now that our wedding has officially been changed to October 2021, the next step is to choose a surgeon and set a date. Finding a surgeon that is operating during a pandemic is not a walk in the park. Technically this is an elective surgery. Many oncologists are still operating, but not necessarily the plastic surgeons (who do the reconstruction after the oncologist performs the mastectomy). Currently I have two appointments lined up who have confirmed that they will operate. Crossing my fingers that we will set a surgery date for July! It sounds strange, but in a way I am looking forward to the summer surgery. I get to do something healthy for myself- that gives me an element of control of my future. At the end of the day, the decision keeps me safe.
I started this piece with a lot “maybe” questions about when I would have my double mastectomy. Though the timing of that decision has been made, there are still a ton of “maybes.”
Maybe I will get direct implants.
Maybe I will have them above the muscle, or maybe below!
Maybe I will choose to have a DIEP-Flap (where they take fat from other parts of your body and use it in your new breasts).
Maybe my fiancé and mom will be allowed to be with me in the hospital.
Maybe I will have to wear a mask the entire time I’m recovering.
Maybe I will have to get tested for COVID before I enter the hospital.
Maybe I will have to quarantine after the surgery.
A-lot of maybes. I never thought I would be getting my surgery at this time, let alone during a pandemic. Yet I know it’s the right decision for me, and for my timeline. I’ve been doing plenty of research, perhaps too much. I’ve had a few close calls when sharing screens with my students while teaching. The last thing I want them to see (instead of the math PowerPoint) is a video of a doctor taking out a woman’s drain tubes post-surgery! Because remote teaching isn’t ridiculous enough…. What’s the message of my story? “When we plan, God laughs.” Making these decisions is hard, but I prefer having maybes that represent options, then no options at all. I realize that the world keeps turning even when my plans seem solid and my timeline is defined. “Maybes” are tough, they give you a lot to think about. However, I appreciate having options and the opportunity to exert control of my BRCA mutation, and my life as well. I guess maybes aren’t so bad after all.