The Lonely Cry
My experience having a genetic cancer mutation and double mastectomy at age 33.
It's taken over two years to write about losing my identity to breast cancer. For those 2+ years, I lost my body to science. I lost any stability I had in personal relationships and friendships. I lost the safe and com- forting feeling I worked so hard to create in my home, and most signi- ficantly - I lost myself mentally and emotionally. Writing has opened a forum for me to take back my identity. That's the wonderful thing about words. If you lose everyone, everything, even autonomy over your own body - no one can take away your words.
I was 31 years old when I found out I had the BRCA1 gene for breast and ovarian cancer. My diagnosis made me cry for weeks. It felt like a curse that infiltrated my body, and there was no escape. My lifetime risk ofbreast cancer was close to 90%, and ovarian cancer was 50-60%. I knew that this would change my life forever. I feared how it would affect my relationships with family and my partner, my ability to work and excel in life, and my future. All I could think about was everything and everyone I cared about in my life slipping away from me.
As a young girl, I watched my grandmother die of breast cancer. It was graphic, sad, and heartbreak- ing. When I was in high school, my mother was tested for the BRCA1 gene and was positive. I remember her being sad, but I didn't quite un- derstand why. At 18, I started having doctors tell me that I should get tested. I told myself I was too young to worry about it, and I would reevaluate when I was 30, because 'Why would I get cancer so young?". We believe we are invincible unt
just how precious our health is.
In June 2020, Covid-19 hit peak numbers. I was a healthcare worker living in a 375 sq. ft. studio apart- ment by myself in the city. I was already feeling lonely. I had no idea how truly lonely I would feel until I found out I had a genetic mutation for cancer. There are different emotions we feel when crying. The happy tears of a proposal, the sadness of death, the anger when you are hurt by someone you love. No one had prepared me for the lonely cry. This is the feeling you have when you cry so hard that you sit on the floor next to your bed for hours because you don't even have the strength to stand up to get in your bed, and there's nothing or no one that can make you feel better because, at the core of it, there is no one that can understand what you are going through. You feel tru
alone, in a world full of people- like you're being buried alive and yelling for someone to help you, but the dirt just keeps getting shoveled on top of you. Looking back, I have met some powerful and inspiring young women in online forums that are BRCA gene positive and have/ had breast cancer that knew exactly what I was going through - but I did not have them there in those moments.
After a month straight of crying, I resorted to setting forth a plan of action. I consider this a blessing and a curse of my personality. The only way I have survived in life is to become semi-manic at executing a plan to combat whatever I am deal- ing with. While it has helped me overcome many tough situations, it has also been a tactic to avoid feeling what's right in front of me. What was I going to do about this?
or I could make a plan. I knew from the moment I found out I was BRCA positive that the plan was going to be a double mastectomy. I didn't want to deal with this anymore.
I spent the next several months meeting with geneticists and doctors. I even started the process of researching plastic surgeon teams that did mastectomies and reconstruction to implant surgery. I was not allowed to have a support person come with me to any of these appointments because of Covid-19- however, they did not want to. Through this process, some of the closest people in my life shut down and did not support me. They did not understand why I needed to make such a drastic decision. I did not have a safe space to talk about what I knew was the best decision for my own body, health, and peace of mind. I started having panic a
After a traumatic and invasive biopsy, I was told my lump needed to be removed. I had a lumpectomy in June 2021, followed by a double mastectomy with breast implant reconstruction in November 2021. Multiple surgeries over a few months left me very weak and opened my eyes to how sensitive my body was to multiple doses of anesthesia, medication, and procedures. I would often feel lightheaded in the shower and my blood pressure would drop, I constantly had neuropathy in my arms and shoulders, migraines that were so severe they would last for days, and medicine wouldn't touch them. My hair fell out to the point where I ordered a wig online. Every time I even touched it; it came out in clumps. I cried every time I took a shower and washed my hair. And despite all the physical struggles Ilyil
As a 31-year-old woman, I saw that loneliness came from every avenue during this journey. My friends made jokes about how lucky I was to be getting some 'nice breast implants'. Many doctors I spoke to did not listen to my emotional pain or odd symptoms that I was experiencing during recovery - all that mattered was the aesthetic outcome or whether I was cancer free or not. I did not want to talk to my family about my struggles and loneliness because I've always felt like I needed to take care of myself and not be a burden. I retreated from them. My partner could not handle me discussing this at all and often met me with anger and frustration. He did not agree with my decisions until he realized how significant this was. I felt like a bur- den and felt guilty that I was putting everyone else through this because
it upset them. This was all my fault. My virtual therapist at the time just kept relating my stresses about can- cer to her own cancer experience and life. The women I worked with at the hospital were angry at me for going through this because I had to take FMLA, and the hospital was short-staffed. Some of them even thought I was faking it because I was young and upbeat, so nothing seemed wrong with me from an outsider's perspective. Inside I was destroyed and broken. I joined a vir- tual support group online with wo- men that had gone through breast cancer, but no one was my age or had undergone a mastectomy. I remember one of them even doing a Zoom call with me 2 months out from my mastectomy and uttering the phrase 3 times "Wow, you don't even look sick. You don't even look like you just had surgery". What
more like a sick patient who just underwent cancer surgery? I found myself in a weird place - where I did not have it as bad as others in the BRCA/breast cancer community but still had it bad because I already had a mastectomy at 33 and I was (and still am) living with a genetic mutation for ovarian cancer. This demographic in the breast cancer community fuels even more loneliness and isolation.
My life will always revolve around mastectomies and hysterectomies, cancer fears, and the 'what ifs'. While there is the relief that there is no more 'what-if' of reoccurring cancer in my breasts, there will always be the 'What if I decided to keep my breasts and never had to go through this? Would I feel more whole?', 'What if I get breast implant illness from my implants?', 'What if I never fully get back my ran
was lucky enougn to find a forum on Facebook full of young women who went through mastectomies. I would message these women almost daily during my procedures and re- covery. Questions that absolutely no one in my life could grasp, like 'Why does my nipple feel like lightning today and my armpit has strange lumps in it?' or 'Is anyone else waking up at 2 am having a panic attack?'. There was almost always someone who reassured me that I was not alone in feeling that way. And even if I was, it was ok to feel the way I was feeling. Reflecting on this experience (which I am still healing from), my emotional recov- ery would have been vastly different if I had those who played a signific- ant role in my life utter those words to me 'It's ok to feel the way you are feeling'. I never heard those words.
2.5 years later, I am working onge
It's ok to feel the way you are feeling.
