About Amy Rauch Neilson
Since I was eight years old, I knew I was a writer. I followed a very predictable path to realizing my dream — a bachelor’s in journalism, several years writing for newspapers, magazines, and then in the age of the Internet, websites, a master’s degree in Creative Non-Fiction.
But all this time, I tried to deny what I knew was a big part of what I’d been put on this earth to do — provide as much real, no-holds-barred information for women with breast cancer, and in particular, those who carry the BRCA 1 or BRCA 2 breast cancer genes — as I could.
From the time I was a teenager, I felt God urging me to write about breast cancer. Sometimes, the feeling would be so strong that I’d look up at the sky, throw up my hands and say, “But WHAT in the world would I write about? Everything that there is to say about breast cancer has been said!”
Besides, I didn’t want to spend my days writing about breast cancer. That would mean I’d have to think about this disease — the one that took my grandmother’s life at the age of 46, the one my mom battled for 19 years before succumbing at age 53, the one that caught my sister Julie off guard at age 26.
But, then, it happened. Six months after delivering my son, I was diagnosed with breast cancer and subsequently identified as a carrier of the BRCA 1 gene. A short time later, during a conversation with my oncologist, Dr. Dana Zakalik, God dropped me yet another hint. “There’s a lot of information out there about breast cancer in general,” she told me. “But very little information about genetic breast cancer.”
Was I crazy to think that God was guiding me in this direction? I thought to myself on more than one occasion. Finally, one Sunday night in November 2008, just before I drifted off to sleep, I prayed this prayer: God, if I am not crazy and this really is what you want me to be doing, please give me a sign that I can’t shrug off as coincidence.
The next morning, as I gathered my son’s sippy cup and dressed him for preschool, my husband said to me, “I’ll take him today, honey.”
That was the first in a series of events that morning that changed everything. First, my husband decided to take our son to school. Then, I was trying to find a shirt to wear and all I could come up with was my T-shirt, which reads: Yes! They’re Fake! My Real Ones Tried to Kill Me! I knew I wouldn’t be seeing any clients that day — so I threw it on and headed out the door.
On the way to the office, I decided to stop for gas. I never do that in the morning. Then, as I was standing at the pump, I noticed a new coffee shop in the strip mall adjacent to the gas station. “Hmm,” I thought to myself. “I ought to give that place a try.”
As I was standing in line five minutes later, waiting to order a Cafe Mocha, the young man behind me tapped me on the shoulder. “Excuse me,” he said. “I couldn’t help but notice your shirt.”
And then he just started talking. His 28-year-old wife, Leza, had just been diagnosed with breast cancer. She was from Albania and had only been here a short while. She’d come to the United States when her sister was diagnosed with breast cancer, but by the time they reached New York and sought treatment, it was too late. They thought it was genetic. “We just wish there was a book out there, something that could help us, guide us through this whole thing,” he said finally.
There was no denying it this time. I had, after all, asked God for a sign that I couldn’t possibly shrug off.
In the days and weeks that followed, I talked with Leza and her husband, Tony, a number of times. I shared what I knew, I offered her support, I gave her hope. I did what I knew I was put here to do. And I realized that, more than anything else ever before in my life, it was what I wanted to do.
God had given me the gift of writing and part of His intent was for me to use it to spread as much information as possible on the topic of genetic breast cancer. For the carriers. And their families. And their friends.
Because genetic breast cancer IS different. Women who carry one of the two genes that have been identified so far have some tough decisions to make that their non-genetic breast cancer counterparts do not. Decisions like: Should I have a double mastectomy to significantly lower my risk of breast cancer? Knowing I carry this gene, should I have kids? If I am diagnosed and need chemo, should I go through in-vitro so that I can have kids later on? I know I carry a secondary risk of ovarian cancer and that I should have my ovaries removed. But when?
These are the questions that I — and every other carrier — face. I certainly don’t have all of the answers — or even most of them. What I do have are real-life experiences — the pain, the grit, the will, the determination, and yes, even the humor — to share. And I’m willing to do that, to tell it like it is, to bare my soul, in the hopes that it will reach the many Lezas who are out there, somewhere.