I could barely hear the genetic counselor over the screams of my four-week-old baby. Like most days, he was wailing at the top of his lungs and we were at a loss how to please him.
What do you want? I’ll do anything.
It’s not like we hadn’t just had a baby boy 16 months before him. But this was different. Every morning, I woke up thinking today would be the day that he’d feel better, that he’d be happy. I changed my diet to help make my breast milk easier on his tummy. My husband and I created a foolproof system to tag team our 11-pound shrieking newborn so neither of us would run away, never to return. We were exhausted, frustrated and wondering what the heck we had just done.
As I stood in the small, private office bouncing my screaming boy in my arms, the counselor informed me it would be at least a month before we’d receive the results. I was finally going to find out if I carried the same genetic mutation that ultimately killed my 39-year-old mother, taking her away from her husband and 11 kids. I was the youngest at just three years old.
I don’t remember my mother having cancer. I don’t even remember when she died. I only remember growing up feeling like a part of me was gone, knowing how lost I felt but having no recollection of the series of events that led to it. I was surrounded by siblings who, how it appeared to me anyway, felt the loss of the actual woman they remembered, not just an idea of what she represented.
What did her voice sound like?
Am I like her?
Did she laugh like me?
Like grief has a funny way of doing, I was hit over the head with the loss off and on during my childhood, often during what felt like the most inconvenient times of my life and when I was supposed to be at my happiest.
But I wasn’t. I was just sad and confused — lost. How could I miss someone so damn much that I couldn’t even remember? The inner critical judgement of my feelings only made things worse. Why are we as humans often hardest on ourselves during the times we need the most support? As I pushed my way through the awkward teen years and into young adulthood, I became increasingly impulsive, sometimes even reckless. I processed my feelings through alcohol, toxic relationships and some seriously questionable choices. Let’s just send a big thank you to the universe that social media didn’t exist during my decades-long phase of self exploration.
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I remember the first time I heard about the genetic link to my mother’s cancer, a mutation called BRCA1. It was the early 2000s and I was on the phone with my sister, listening to her educate me while I paced around my small southern California home. It’s not like we hadn’t suspected a genetic connection sooner, given that two of my mother’s four sisters had also died of cancer. We also had cousins who had been diagnosed and gone through treatment. My sister described how she, along with my other sisters, had been tested for the mutation. But unlike my other sisters, she did tested positive. The words that followed were like something you’d hear from one of Charlie Brown’s incoherent teachers. All I really got out of it was that she would likely undergo preventative surgeries and have both breasts removed, as well as her ovaries.
Is she insane? Why would she do that? A genetic mutation is not a diagnosis! What. Is. She. THINKING?
It was 2003. I had been married less than a year. We were starting to think about babies. I couldn’t even imagine being tested, never mind make a decision to drastically change my body forever.
I wasn’t the most understanding sister in that moment. If I have any regrets, that is one of them. My sister is 14 years older than I am and experienced our mother’s death much differently from my three-year-old self. She needed to make decisions based on what she felt she needed to do for herself, her husband, and her five kids. She was a warrior and I couldn’t even see it.
Until I could.
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So here I am on that fateful day in late 2005, standing in the genetic counselor’s office, rocking my screaming child back and forth, finally ready to get the information that could change my life. I was married and had given birth to my two baby boys, I knew it was time for me to find out if I had the mutation. I was 34 years old, just five years younger than my mom when she died. Once I heard that cancer can take years to develop, I knew it was important for me to know what I was up against.
December 5, 2005
Several weeks after that appointment, I was home rocking my baby in a La-Z-Boy recliner while watching my toddler play on the floor next to me. My husband had just run down to the local grocery store to pick up some necessary items before he was to head off to a long night of video editing. The phone next to me rang and I picked it up.
Hi.
Uh-huh.
Okay.
I understand.
I hung up the phone. I felt like someone had just poked me with a stun gun. Holy shit. I carried the BRCA1 mutation. I kept rocking my son, my head spinning yet my body paralyzed with fear. A few minutes later, my husband walks in, his arms filled with groceries.
I kept rocking.
He puts the groceries away, none the wiser that I had just received a call that would change the course of our lives. I wanted so badly to tell him, to fall into his arms in ball of emotions. But no. I know my husband. He would’ve called in sick to work to stay home and take care of me. Anyone in TV knows that a freelancer calling in sick last minute is the kiss of death. He was working on a project with an intense schedule and was killing himself already to finish the work required to enjoy two paid weeks off at the end of the year. This was not the time to distract him with emotional news.
So I stayed quiet. I sat in silence, rocking back and forth, wondering what I was going to do.
When Jeff returned home sometime in the middle of the night, I sat up in bed.
I have the gene.
I lay back down, still feeling numb, and he curled up behind me. I don’t know how long we lay there silently before we dozed off, only to be awaked a few hours later by the sound of the baby.
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The days that followed that phone call felt like a blur. I began to research everything I could about the risks, talked to women —including my sister— who had been-there-done-that, and made appointments with some of the top doctors in the LA area. I was determined to take on this challenge with a clear head and a logical plan of attack. There was no room for emotion, I told myself. I’ve got work to do.
As my husband approached his time off at work, I couldn’t wait to have him around for two whole weeks. And the fact that they’d be paid (that’s like finding a unicorn in the freelance TV world), I felt like we were being sent a gift from above. Finally someone understood what we needed and was providing.
Until my husband walked in early one night from work.
I was laid off.
And we’re losing our insurance.
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The weeks that followed were some of the most difficult of our lives. I scheduled tests and consults and immersed myself in researching my options, now on a COBRA plan that was depleting our bank account and my ability to cope. It was suggested that I stop breastfeeding and have a breast MRI in order to get a baseline scan that can be referred to later.
February 22, 2006
I had just walked in from a freelance gig. As I shed my professional look for my go-to yoga pants and t-shirt, the phone rang.
Hello
Yes
Uh, okay
See you tomorrow
They found a lump. Could I come in the following day to discuss next steps? Uh, yeah.
During that appointment, I’d receive the contact information for a breast surgeon, something I was already considering as a preventative step but this certainly changed things.
I met the surgeon, a quirky yet confident doctor who both scared the crap out of me and calmed my nerves — simultaneously. She shared that I wasn’t a candidate for a needle biopsy as the lump was positioned in a way they couldn’t reach. Instead, it would require a surgical biopsy. Given the level of research I had done over the past two months, I knew a surgical biopsy would be invasive and, if they did discover I have cancer, with the increased risk of it returning multiple times due to my BRCA status, it would ultimately lead me to a bilateral mastectomy. I looked at my husband and we both knew what needed to happen next without even saying a word to each other.
Just take ‘em.
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I was wheeled into surgery March 16th, 2006, a decision I have never regretted, not even when I woke up to the news several hours later that I did not have cancer. And I certainly didn’t regret it when my surgeon revealed four days later that pathology had shown pre-cancer growing in the other breast. “You dodged a bullet, young lady,” she said, while standing at the end of my hospital bed.
I was 34 years old, sore as hell and just wanted to get home to my babies. But I felt so lucky. I was given a gift that my mother was never offered, or even aware of. For that, I am eternally grateful. Grateful I would be around for my two boys (spoiler alert: and my daughter who would join us a couple years later via adoption). Grateful to raise them and to love them and to show them I would do whatever it takes to be the mother they deserve.
That surgery was followed by more reconstruction, a complete hysterectomy, and even, years later, more reconstructive surgery. Was it easy? Hell no. But not once have I looked back and seen it as anything other than the gift it was. It was the catalyst for turning what once was a “poor me” victim mentality into what it is today — filled with gratitude.
It was during that experience that I saw the opportunity to be who I was meant to be, someone who shares her own story to connect with others who may be going through their own overwhelming challenges, offering them perspective and perhaps a little light of hope. Over the following months and years, I would field calls, emails and texts from friends who would know someone who might also carry the genetic mutation, would I be open to talking with them?
Absolutely.
I reveled in my new role of supporting other people through challenges I had personally gone through and overcome. And that’s a good thing because the years that followed provided me more than my share of unique circumstances, obstacles that sometimes felt like an ever-present kick in the head — repeatedly. A grueling international adoption process, an autism diagnosis, multiple ICU visits, financial troubles, losing our dream home, watching my father battle — and ultimately lose — to Alzheimer’s, and a child’s recent diagnosis of a chronic, painful autoimmune disease is sometimes enough to make me want to throw in the towel.
But I refuse to succumb.
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While it was the loss of my mother that I had always seen as the single most influential moment in my life, often driving my choices during those first 35 years, I realized it was actually my father’s example that truly shaped who I am today. My father had experienced more pain in his life, losing his own father and brother to heart disease years before losing his wife and mother of his 11 children to cancer. He was a 38-year-old elevator repairman and single father, who suffered every day with an unfathomable loss, along with debilitating Rheumatoid Arthritis, when he should have been in the prime of his life.
My father had plenty of reasons to give up. But he had even more reason to keep going. His intense love for his family (spoiler alert: including his new wife and two more children), his perseverance and determination to never give up, those are the qualities that shaped who I wanted to become. While I was so focused for so many years on what I had lost, it was my father who was showing up everyday, living by example, and displaying daily acts of courage that would inspire his family and community.
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It was early 2016 when my father began to approach the end of his life. Three weeks before he died, I sat next to him, watching the NFL playoffs, knowing it could be the last time I would see him alive. He didn’t know who I was. He wasn’t sure where he was. It hurt my heart to see him begin to give up. But even through the pain, you could see a hint of my father’s indomitable spirit rise up and shine through. He kept repeating the same words over and over.
It’s been a wonderful life.
His memory was all but gone. His life was nearing the end, yet he still could find the gratitude for what had been. My father chose — even if not consciously — gratitude. The best way to honor his legacy is for me to choose gratitude too.
Life can kick us around once in awhile. It’s crazy to believe we can live without adversity. But it’s that adversity that has actually brought me to my own purpose, passion, and peace. I have faced the dragon and I’m still standing. I no longer look at my personal challenges with that “why me?” attitude, but see them all as an opportunity to become more of the person I’m meant to be — to choose gratitude above all else.
While I’m still a work in progress, I choose to allow my challenges to shape me in a way that allows me to be of service to others. I choose to look at the mountain that lies ahead step by step, instead of feeling buried by the work required to reach the peak. I choose to be happy in the journey.
Today, I’m the founder of a community of women over 40, sharing my personal experience and expert connections to help other women thrive in their own lives through the choices they make. I’m still married to the love of my life and the proud mother of two teenage boys and a tween daughter. I’m eternally grateful for this messy, sometimes complicated, imperfect life. I’m grateful for all I’ve been given, within me and around me. And I’m grateful for the opportunity to share this small part of my story with you, the reader. Because through the pain and suffering, growth and personal transformation, one thing remains true…
It’s been a wonderful life.