When faced with the challenge of testing positive for the BRCA1 gene, what seems like an insurmountable decision can unexpectedly become a clear path forward. To understand my journey, you need to hear my story.
I often find myself reminiscing about my grandmother, her comforting voice, the warmth of her kisses, the scent of her perfume, and the sparkle in her eyes. While I often say my decision was for my children, husband, and family, the truth is that it was primarily for her.
As the first granddaughter in a lineage of boys, we shared countless moments together—whether it was strutting down the runway, spending weekends on the boat, enjoying fragrant baths, or singing “You Are My Sunshine” through the house. It felt like a perfect life, and I longed for it to continue.
I remember my mother recounting how my Nana insisted to her doctor, “Something isn’t right, please investigate further.” Yet, her pleas went unheard. Despite begging for a hysterectomy, the medical community ignored her. I was just five years old when my Nana was diagnosed with ovarian cancer. She sensed something was amiss, but no one took her seriously.
Her battle lasted years, and I vividly recall the day my parents explained we had reached the end of her fight. I longed to be by her side. Seeing her there at hospice, surrounded by love yet so devoid of life, was gut-wrenching. I said my goodbyes in the best way I could. She passed away when I was nine; she was my everything, and I was hers.
Her loss changed our family profoundly. During tough times, I would talk to her. I shared my triumphs, like making the softball team, knowing she was always with me in spirit.
Years later, my uncle and cousin tested positive for BRCA1. When my aunt urged me to get tested, I hesitated. I was preoccupied with raising my children and creating a life. Deep down, however, I knew what I might find. We all did.
I confided in my Nana, promising I would get tested someday, but not yet. The thought of what I might have to do weighed heavily on me. I wanted to ensure I would live—a promise not just for myself, but for my family.
At 31, just over a year postpartum, I attended my routine well-woman visit. My doctor suggested testing for BRCA1. “Absolutely, just give me the paperwork.” But she insisted, “We can do it right now.” My heart raced as I realized this was it. I took a deep breath and said, “Okay, Nana, I hear you.”
A month later, the results confirmed I was BRCA1 positive. My family understood my next steps, and my husband stood firmly behind me. I made the decision to undergo a preventive double mastectomy.
But as a mother of two, with my youngest just a year old, I worried about recovery. Who would comfort my daughter at night? Who would dance with her when she was cranky? How would we manage? I wasn’t being ridiculous; I wanted to live free from fear. If my Nana had been given this choice, she might still be here.
Within a month, I assembled my medical team and scheduled my surgery for January. I focused on my health in the lead-up, never doubting my choice. However, reality hit hard as the date approached. The fear of the unknown loomed. How would I look afterward? How would my kids adapt? Would my husband still love me? Would I love myself?
On the morning of my surgery, I prepared quietly. After a final kiss for my babies, my husband and I made our way to the hospital. My parents were waiting for us there. As I checked in, I felt a wave of emotions. My mom called, her voice trembling with fear. I started to cry—the tears I had held back for months. She decided not to come before surgery, fearing it would make things harder for me. We talked and cried; I understood her choice, but I knew if she were there, I might not have the strength to go through with it.
When my name was called, I walked back alone to pre-op, clutching memories of my Nana. My husband joined me as soon as he could, his steady presence reminiscent of our son’s birth. My dad and stepmom arrived, and I saw the worry etched on my father’s face. I held strong for him, not wanting him to see me cry.
As I walked toward the surgical room, tears streamed down my face. My anesthesiologist offered words of encouragement, but I could only focus on my Nana’s reassuring voice, telling me, “You are strong. You can do this.”
Then, it went dark. I woke up to a transformed self—physically and emotionally.
Conclusion
In conclusion, testing positive for the BRCA1 gene is a profound journey. It requires immense courage and strength, not just for yourself, but for those who love you. Embracing this choice means prioritizing life and legacy.
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Summary
This article recounts a personal journey of testing positive for the BRCA1 gene, highlighting the emotional complexities of making health decisions for oneself and one’s family. It emphasizes the importance of legacy, love, and the courage to confront fears for a healthier future.