Angelina & Me – Part 1

It was 2013. I flipped on the TV to distract myself. Plastered across every station was the news of Angelina Jolie’s preventative double mastectomy and subsequent breast reconstruction as she had learned she had the BRCA1 gene. The reporters were in a tizzy. “What is the BRCA gene?” “Why did she have such an aggressive surgery before an actual cancer diagnosis?” “What did this mean for her acting career? Her children?”

I stared, dumbfounded at the irony.

Just weeks earlier my father, at age 70, had been diagnosed with male breast cancer. He had two surgeries, after having some complications from the first, and was going to be undergoing chemotherapy treatment in the coming weeks. Under his doctor’s advice, he had taken the BRCA test and had a positive mutation for one of the genes. My mother had also battled breast cancer undergoing surgeries and chemotherapy. However, at her time, testing didn’t exist and to my knowledge, she didn’t have any further genetic testing. Two strikes against us. My dad’s doctor recommended that my brother and I get tested.

When I answered the phone, the nurse’s tone was sympathetic, another sure sign that my gut feeling was correct. “Your test results came back positive for the BRCA2 gene mutation.”

As I sat staring at my three-month-old daughter, all I could think was, “damn.”

It was true. Sometimes you just know before you know.

Just a few days earlier, I had gone to a girl’s night outing with some friends. One of the mom’s had just completed her last round of chemotherapy and was wearing a hat that showed her new hair growing back. She was the mother to two children, one was five and the other was eight. She was scheduled for a double mastectomy the next week. As I looked at her hair, I thought, “Was I going to be that mom?”   

Thinking back to the weeks prior to receiving my results, and discussing my father’s results with my OB/GYN she asked, “Well, what are you going to do?” Confused, I said, “I would like to be tested as well.” 

“Yes, but then what?” she said in her thick, stern Russian voice. “If it is positive, what are you going to do? Have a mastectomy?”

I was taken back by her bluntness. I barely knew what this all meant and was hoping for support, not an interrogation. I replied sheepishly, “Well, no…” Looking down at my six week old daughter, whom I was breastfeeding.

“I just want to know,” I whispered quietly.

But did I really want to know? Maybe. Not really. But a little bit, yes.

Here I was. Thirty one-years old and faced with a choice to find out what my future would hold. The rest of the conversation with the doctor didn’t get much better. She seemed annoyed with my decision for further testing, maybe because it was so new and she didn’t know much about it at the time. I don’t know.

A thousand questions ran through my head. 

When would I get breast or ovarian cancer? After all, with both parents having breast cancer, and an increased risk above the average person, it was bound to happen at some point in my life.

Should I get a mastectomy? After all, my size A breasts had been the same size all along, and were never the topic of any conversation, so would it really be a loss?   

But then the deeper questions rolled around in my brain…

Would I be able to see my girls grow up?

Would I be at their weddings?

See my future grandchildren? 

And the worst question of all, would I pass this on to them? 

***

You can choose a lot of things in your life. Where to live. Your spouse. How you live your life. But you can’t change your genetic makeup and turns out, that fear was paralyzing as my brain spiraled into every worst-case scenario possible.

I spent the next several years ignoring that diagnosis. Not really the best advice, and certainly not ones my doctors really appreciated. I could still hear that stern Russian voice ringing in my ear repeating, “Well, what are you going to do?” I think she scared me more than the diagnosis.

Though I did keep up here and there with routine testing, my next OB/GYN recommended a preventative hysterectomy. Two days before my scheduled surgery, my 13-year-old daughter nearly died when she suffered a severe case of acute pancreatitis landing her in the ICU for two weeks, and another week in the CCU before being discharged 18 days later as a diabetic with a feeding tube and new lifelong medical needs. What if I had been in the hospital myself and missed the signs that she had become ill so quickly? It still makes me shudder a bit when I think of those, “What ifs?”

From there, the hits just kept on coming. Additional caretaking responsibilities for my elderly neighbor with dementia and no family to help. Taking care of my ailing mother with ALS, and then moving into a new home where we could tend to my 80-year-old father after my mom passed. A child with new medical issues and all the things being a wife and a mom could entail.

Life had taken over in a way that I couldn’t control, and daily chaos became the norm.

Somehow, years later, I have gotten to a place where a little bit of peace exists, and I can finally take care of myself. My dad died a year ago. My girls are older and more self-sufficient. Medical issues are under control.

I am out of excuses. The fear of the unknown will have to come to light.

The world is a different place than it was when I was diagnosed. Should I have considered myself lucky that this test exists and that I had the option of knowing? It’s like carrying an active bomb in your hands, never really knowing what will set it off and what the damage will be thereafter. Angelina’s decision and the subsequent media coverage led to increased awareness about genetic testing, preventative mastectomies, and breast reconstruction options that had not been earlier options, paving the way for women later down the line to have these discussions with their doctors. Nowadays, there are genetic specialists, breast surgeon specialists, and more research is available now than ever before. Unfortunately, or perhaps fortunately, this will all probably become “my norm” as I navigate this journey throughout my life.

I still keep Angelina’s news clipping from that day in the same folder as my own results. Alongside the fear I carry about what lies ahead, I now carry more hope than ever before.