Introduction

My story is about my mother’s heroic fight against stage IV bile duct cancer, or cholangiocarcinoma. This story also is about caregiving, connecting, courage, and compassion. These are common threads for the disabled or for sick individuals and their caregivers. But, this is not a common story, because bile duct cancer is rare in the U.S., and that rarity affected every decision we made in our family’s 18-month journey with this disease.

My journey with my mother, Joanne, and her cancer began in December 2012. At that time, I had never heard of bile duct cancer. In fact, I couldn’t tell you exactly where the bile duct was located. I wasn’t interested. I had just lost a job and I was more concerned about my 82-year-old father’s heart condition. My father, Robert, was admitted to hospital that month, because his heart medications weren’t working and his defibrillator was misbehaving. His doctors wanted to study why his implant had acted up.

During the time that my father was hospitalized, my 78-year-old mother called me every day. She gave me a new reason to worry, because she couldn’t keep solid foods down and she had the worst case of diarrhea. One time she had to remove her pants and wear a pair of my father’s trousers home after visiting him at the hospital, because she had no control over her bowels. I had to question why she was at the hospital, as she swore that her condition was caused by the Norovirus, a highly contagious disease that was spreading like wildfire across the country that winter.

When I realized that no one else who had come in contact with my mother that month had become sick — including my father — I then had to question my mother’s self-diagnosis. She continued to insist that Norovirus was her problem, and that she couldn’t find time to go to the doctor because she had to care for her husband. I packed a bag and was ready to head to my parents’ home to help, but mom said she’d rather die than see me darken her doorway. Noting the usual ambivalent relationship we had developed and become comfortable with over the years, I let the topic go as long as mom promised she would try to consume at least 1,200 calories per day by the end of the week and try, in the meantime, to stay hydrated to counteract her fluid loss.

The doctors released dad from the hospital on Thursday, December 13, on increased medications. Since he had been through this routine several times before, the family wasn’t overly worried. Dad’s heart problem was nothing new. He had his first of three heart attacks at age 30, when I was a mere six-year-old child, and my two younger brothers and I had come to believe that dad would be the first of our parents to go. Mom, on the other hand, was the picture of health. I can’t remember a time when she was laid up for any reason. She didn’t drink, she didn’t smoke, and she constantly watched what she ate. She seemed invincible.

Mom continued to be sick during the week following my dad’s release from hospital, although some symptoms subsided. She did see her family doctor, but he couldn’t pinpoint an exact cause for her illness. Mom continued to claim, up to the week she died in June 2014, that she contracted Norovirus that December. I continued to humor her, even though in March, 2013, a surgeon would diagnose a virulent and malignant cancer that had disabled her bile duct and that had metastasized to her liver and small intestine.

My ability to spend time with my parents during the progression of my mother’s disease is as rare as her cancer. For those adult children who choose to spend time with their parents, I want to give you hope. Many adult children cannot or will not disrupt their lives to care for their parents. I hope to give those readers a chance to find peace with their choices, because any decision can seem imperfect when perfection and self-protection become imperative.

Imperfection can hold grace and beauty, but it can take time and effort to find those gifts. I learned this lesson well through my relationship with my mother during her disease, a situation that sharpened the lens on all our flaws. I began, at age 59, to find courage to defy my mother during the final phase of her life and to stay with her on a perfectly selfish path to find love and forgiveness.

Linda Goin
1/1/2015