In the months following another miscarriage, I frantically Googled, desperate for some explanation. While most miscarriages are gut-wrenchingly “average,” I felt certain that the sustained pain I was experiencing was anything but. It just could not be. And I was right: my uterus had a rare condition that rendered it uninhabitable to the babies I was so desperately trying to have. Asherman’s Syndrome. But what I could never have anticipated was the other diagnosis I would receive once I went down the rabbit-hole of medical second opinions. My newfound infertility exposed a defect lurking deep in the recesses of my genetic code: I am BRCA2 positive. A ticking time bomb of hereditary cancer. As one of my oncologists put it, it was not a matter of if I was going to get cancer, but when.
I had never thought twice about the amount of cancer in my family. It didn’t seem out of the ordinary, by no means excessively prevalent. So, when my new gynecologist suggested I should strongly consider genetic testing, I did not entertain the idea that my results could come back positive. In the four weeks that I waited for the blood test to come back, I never spared it a single worry. Instead, I had resigned myself to bad news about my chances of conceiving again. C-section after failed labor. Two quite urgently needed D&C’s due to retained failed pregnancies. All of this meant I most likely sustained long-term damage.
Truthfully, I had already somewhat divorced myself from having more children. After five agonizing days of bleeding while my city was entering Covid lockdown, I finally miscarried again on the eve of my son’s second birthday. In the days that passed, I went to the hospital three times, and eventually had my surgery with no one by my side. By the end of the week, my mother-in-law had taken her last breath. Cancer had decided her fate. Pregnancy had lost its magic. The dream had swiftly shifted into a nightmare. The touch of my husband made me recoil. I would learn to love being “one-and-done,” I thought.
When the results eventually came in it was one of those calls you know is carrying bad news. The vibration and ring of the call just hit differently. I could feel the tension of the nurse who had to tell me they needed to speak with me to discuss the outcome of my genetic test. She pitied me. I knew in that instant my life was never going to be the same.
In bold print, my fate emerged: “This patient has Hereditary Breast and Ovarian Cancer syndrome.” I kept replaying my odds over and over: 84% likely to have breast cancer. If I had ten lives to live, at least eight of them would have breast cancer. Ovarian cancer. Pancreatic cancer. Melanoma. Four risks. Four cancers. Any one of them could strike at any time.
Graciously, my doctor explained it all to me, and I sat quietly and listened, as if I hadn’t just spent the previous 24 hours manically researching what that meant. As if I hadn’t already read through dozens of accounts. Op-Eds from famous actresses. Message boards of cancer support groups. As if I hadn’t combed through as many photos of prophylactic mastectomies as I could possibly find. Almost as if I hadn’t already cried a well of tears so bottomless I nearly drowned.
She made it clear that I had options. Particularly, that there were ways I could still have children if I wanted, but that path was an uphill battle. We could try trimming the scar tissue that was banding parts of my uterus together, but there was a very serious risk of ripping through my uterus altogether because its lining was so thin and damaged. I could extract my remaining eggs and have them genetically tested, isolate the ones that did not inherit the BRCA mutation (there’s a 50/50 chance of passing it on), and perhaps use a surrogate.
But the pursuit of more children suddenly felt so selfish to me. What if in the time it took to safely have another child, assuming I even could, cancer cells started to proliferate in my body? Would the promise of motherhood the way I had long imagined it offset the threat I was now facing?
I didn’t have to cut my breasts off or remove my ovaries, either. I could opt for surveillance every six months, alternating mammograms and MRIs. I could take chemoprevention drugs for five years. Regular skin checks. Maybe an endoscopy now and then.
But I knew. I knew from the deepest part of me. I didn’t need to have that abnormal mammogram to know. Nor did I need to have my first biopsy and breast cancer scare within just weeks of receiving my diagnosis to know with absolute certainty. No amount of surveillance would stop the inevitable.
I was not going to let my own body kill me.
In this moment of unthinkable duress, I found a type of clarity I had not yet known. One that I had been waiting for my entire life. That I was worthy of the kind of love you can only give to yourself. That my life was worth living and that I was in the unique position to do something for myself, an act of care, a sacrifice. In this moment where my world was crumbling before me, I realized I loved myself too much not to have surgery. And I loved my son. I loved being his mother more than any life I could have conjured for myself. How could I entertain an existence where cancer could take me from him?
That doesn’t mean the decision to have major risk-reducing surgeries feels “good”. My anxiety is at an all-time high. My reconstructed breasts will likely never again feel sensation consistently, if at all. Within the next handful of years I will be in premature menopause. My sex life will change forever. There are friends and family members who altogether stopped showing up for me. Some even explicitly telling me my decision to have the surgeries was “too drastic.” That I was crazy to give up on more kids. And when my gynecologic oncologist broke the news to me that my enlarged, damaged uterus was too much of a risk factor and that I should strongly consider a hysterectomy while he removes my fallopian tubes, I felt myself come undone. All of that work creating life. Watching it slip through my fingers. My son’s first home. For my babies who didn’t make it, their only home. The pain I had endured, procedure after procedure. The guilt I felt that I just couldn’t stay pregnant. The trauma that I will carry with me to my grave.
But still, as the weight of my reality feels so insurmountable, I am ready to say goodbye to the organs that no longer serve me. Goodbye to the person I was before my BRCA diagnosis. The me who is on the precipice of becoming? She might not be the woman I thought she would be. But I await her with open arms.
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