Coronavirus; A possible pause on my journey.

Our country is on pause. Schools and businesses are closed. People need to stay at home and practice social distancing. Tons of people are out of work and families are feeling the detrimental effect COVID-19 is having on our lives. Yet somehow, at the same time, each day is dynamic and minute by minute information is rapidly evolving.

Dealing with uncertainty has always been particularly challenging for me. Upon learning about my BRCA1 diagnoses my mind often spiraled with all of the “ifs” and “whens” I was faced with. As I have learned more about my risks in conjunction with my family history, I know my risk of developing breast and/or ovarian cancer is extremely high. However, if I could 100% replace “if I get cancer” with “when I get cancer” it would certainly make it easier to make such life altering decisions about my body.

In the summer of 2019 after a brief cancer scare, my husband and I decided we had to schedule my preventative mastectomy as soon as possible. Even though my body had recently undergone a traumatic birth and emergency C-Section, time was not in our favor. While at this time my BRCA journey had begun 7 years prior, this was a new trajectory. The beginning of life altering surgeries...the mastectomy just being step one. The emotional build up the following months was a steep incline, much steeper than I could have ever imagined. While some moments I felt empowered that I was taking control over the unknown, more often than not my days were filled with extreme anxiety, tears, and sleepless nights. While trying to navigate the ropes of being a new mother along with working passionately as a special educator, the journey was arduous. Sometimes my thoughts would go to such a dark place. So dark, that I was afraid to tell anyone else because saying them out loud made them more real and upsetting the people who love me most was the last thing I wanted to do.

I am doing this surgery so I can live a long healthy life for my family. What if I ironically die during surgery? What if my daughter never even gets to know her mommy? What if my body rejects the reconstruction process and I hate my body the rest of my life? Will my baby girl forget I am her mommy during recovery? Sleepless nights, I wrote my husband and daughter a myriad of letters expressing my love for them, the thought process behind this decision we made, and my hopes and dreams for them for a future without me in it.

January 15th, 2020 I woke up ready to tackle my prophylactic mastectomy. Many women who had already had surgeries assured me that the cognitive load leading up to surgery would decrease after surgery was complete. After 8 long hours, I woke up from my mastectomy and it was a success. First and foremost, I woke up! Secondly, there were no complications and my body accepted the tissue expanders that were put in my chest after all of the breast tissue was removed.

Saying the physical recovery the days after the mastectomy was brutal would be an understatement. The pain was unbearable at times and the drains coming out of my body felt inhumane. After multiple middle of the night emergency phone calls to the surgeon and a trip to the ER, my pain killers were changed with hopes that my body would respond better. My emotional capacity was 100% focused on getting through the recovery, there was no room to think about the physical appearance of my body or the future. Getting through each hour, each minute was at the forefront. After my drains were removed week 3, recovery was by no means easy, but it became more manageable. My mind started to open up again to focus on the continuation of the reconstruction process and the next steps. I went to the surgeon every 2 weeks for “fills” (saline injected into the tissue expanders to make room for the implants). Once these fills were complete, it was time to schedule the final step to reconstruction, the exchange surgery. The thought of having these uncomfortable tissue expanders removed from my chest and breast implants put in was invigorating. Never could I have imagined I would look forward to a surgery so much! Mostly though, I looked forward to putting this huge step in my journey behind me and continuing my trajectory to eventually living a life that my BRCA diagnoses wasn’t at the forefront. After the exchange surgery, I could feel more comfortable in my body both emotionally and physically. I could really start my emotional healing of feeling comfortable being intimate with my husband again and focus on gaining back a sense of connection with my body. Then, we would start trying to have another baby as soon as possible, so we could complete our family and I could get my final surgeries for BRCA: fallopian tube removal during a planned C-Section followed by a hysterectomy 6 months later. We had the most meticulous plans in place and my physical and emotional recovery was on track.

Now right as my exchange surgery is about to happen, my physical journey is likely on pause. My mind is filled with unknowns, uncertainties that I have absolutely no control over. Non-emergency surgeries are all on hold right now because of the COVID-19 crisis. While I fully understand why, I can’t help but feel the personal impact this crisis is having on me. My surgery hasn’t officially been cancelled yet, but my surgeon’s office told me the chances were very low that by April 27th they would be performing non-emergency surgeries again. While this part of the process may come to an abrupt halt, my emotional recovery is moving quicker than I could have possibly imagined.

My ovaries will be in longer now. What if I get ovarian cancer in the meantime? These tissue expanders are so uncomfortable and sometimes painful, how much longer will they be inside of me? How much longer will I feel so disconnected from my body? What if this changes our timeline so much that I can’t have another baby?

My husband and I talk every day about perspective. We are so lucky we have a beautiful healthy daughter, a home, and our jobs despite the COVID pandemic. We are so grateful that I had the mastectomy already and feel terrible for the many women who’s preventative mastectomies have been put on hold. As hard as it is, I will try to keep focusing on the things in life that I do have control over right now: practicing gratitude, being present with my family, staying connected virtually to loved ones, and practicing self-care. We celebrated Ava’s first birthday and she had the most incredible time, of course being blissfully unaware of the world’s crisis and what is going on with her mommy.

I am here to listen, here to talk to any BRCA sisters who are feeling the serious impact that COVID-19 is having on their personal journeys. Please don’t hesitate to reach out.

Love,

Erica