Amy Rauch Neilson redefined the word “battle.”
When it comes to cancer, that word is often overused and exaggerated. Most people do what the doctors tell them and hope and pray for the best.
Not Neilson. The Belleville writer and mother of a frog-loving little boy named Theo would have none of that. She died Sunday at 43, but not before a public knock-down, drag-out fight with the cancer-causing genetic mutation, BRCA1.
She chronicled her life with cancer on her blog, www.itsinthegenes.org, had nearly finished writing a book and was twice featured in the Free Press.
But the chromosomal misprint threaded through the Rauch family predisposes carriers to cancer, especially breast and ovarian. It most likely killed her mother and grandmother. For carriers of the BRCA1 and BRCA2 mutation and their loved ones, life’s decisions — marriage, children, jobs and health insurance — become painful considerations of mortality.
Rauch Neilson asked doctors after her 2006 treatment to slice away her ovaries and breasts. Her reasoning: Take away cancer’s real estate so it can’t return.
But in January 2011, relaxed and warming herself by the fireplace after a winter romp outside with her husband, Don Neilson, and son, Theo, she found another lump — this one grape-sized — wedged between her breast implant and skin.
“She was devastated by the second diagnosis,” said longtime friend Kristi Kahl, 43.
Frustrated and angry, she ran into the snowy winter blackness one night soon after the diagnosis, Rauch Neilson told the Free Press last year. Outside the family home on Edison Lake, she glared skyward to where God might be: “Are you kidding me? Are you kidding me?” she screamed.
Then she turned to her writing.
“Since I was 8 years old, I knew I was a writer. I followed a very predictable path to realizing my dream,” she wrote. “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 BRCA1 or BRCA2 breast cancer genes — as I could.”
Loved ones and strangers read of Rauch Neilson’s lonely and tear-filled moments, but also everyday pleasures — watching Theo hang bulbs on the Christmas tree, a ride on a tractor with her husband on a chilly winter day and gluing glitter on a pair of black pumps with a friend for a Bras for a Cause fund-raiser.
In person and online, she was “uplifting and funky (and) passionate about everything,” Kahl said.
Whether at cancer awareness events, at the grocery story or on family vacations, Rauch Neilson became a walking dictionary for anyone who would listen to information about cancer-fighting foods, clinical trials and phrases such as “PARP inhibitors” and “lymphocytes.”
She posted new research and news stories on her blog for others diagnosed with cancer.
“First and foremost, she wanted to beat this for her son,” said Dr. Dana Zakalik, Rauch Neilson’s oncologist at Beaumont Hospital in Royal Oak. “But she also wanted to be an example and inspiration for other patients. She attacked this with great enthusiasm, great optimism and great belief.”
By December, the cancer had spread to her bones. Rauch Neilson joined friends and loved ones at a local park, where they set sky lanterns in her honor.
Now, family and friends will work to get a book published about her cancer. She finished it in the fall and had been in the process of organizing its chapters and getting it edited, Kahl said.
For now, her husband said his focus is Theo, who sat with his mom in the hospital room two weeks ago, in the quiet after doctors delivered the news: There would be no more treatment.
It was his wife who best prepared Theo to continue to live and love, Don Neilson said.
“She was a wonderful, loving mom and a wonderful, loving wife,” he said. “Her blog was about breast cancer, but she didn’t let that be who she was.”
Click link to make a donation to Theo’s College Fund via Paypal
Or Checks Payable to:
Amy Rauch Neilson Benefit
PO Box 580
Milford, MI 48381
Thank you for keeping Amy’s family in your thoughts and prayers.