Nancy Rhodes Johnson is a death with dignity advocate in East Lansing, Michigan. Learn how you can share your story.
Cancer does not define me, but it dominates my life nonetheless.
Before my body was overtaken by the pain that accompanies a debilitating terminal illness, I was a teacher, an athlete, and an artist. I painted 20-foot murals commissioned by the city of Syracuse, where I lived for 25 years. I was the first woman commissioned to paint a mural dedicated to women in the military that is permanently installed in a Federal building. I was an adjunct professor of art at a local college.
My life was full and fulfilling. But then the pain began.
It took years for me to receive an official diagnosis. I went from doctor to doctor, explaining my symptoms. I was brushed off as a hypochondriac by multiple doctors after I presented them with a comprehensive list of symptoms. More sympathetic doctors referred me to pain clinics, whose treatments failed to bring me sufficient relief. Nothing seemed to help.
Finally, I decided to stand up for myself. In 2012, I asked my doctor to write me a referral for an MRI. The results showed I had cancer in both kidneys. I was devastated.
The doctors decided to use cryoablation to remove the tumors. However, because the tumor was located just above an artery, they could not get all the cancer out.
Over the next year, the pain became concentrated in my lower back. When I was hospitalized again, I was in so much pain I could barely get out of my hospital bed. My oncologist was concerned enough about the back pain that he ordered another MRI and a PET scan.
The scan showed innumerable tumors in my bones, from my head to my toes. There were so many tumors clustered together it was nearly impossible to see my bones on the scan.
I was diagnosed with metastatic terminal breast cancer that had spread to every bone in my body. My prognosis: anywhere from 15 months to 10 years.
It’s been three years since I received my terminal diagnosis. Since then, I have lost most of my mobility. I use a motorized wheelchair to get around. I sleep in a hospital bed that rotates in multiple directions, which helps me turn around more easily but also reminds me of how I used to be able to move with ease. I manage my pain with medication prescribed to me by my doctor.
I’m stable for now, but I have no idea when my condition could worsen. It feels like living in limbo.
When I learned about death with dignity as an end-of-life option, the first thing I thought was, I want to have that choice. Should I find myself in even more unbearable pain than I’m experiencing currently, with a prognosis of a few months to live, I don’t see any reason to prolong my life a bit longer if it means I’ll be living in despair – and if it would bring my loved ones further distress.
Unfortunately, my home state of Michigan does not have a death with dignity law. I want this to change. I will do everything that I can to advocate for passage of a law in my state. That includes sharing my story: with you, with newspapers, and with lawmakers, who have the power to make policy change. I invite you to share your story, too.
I dream of spending my final days with peace of mind, with the people I love around me, who know I’m making what I feel is the best choice about my care. Medical aid in dying would make that possible.
Join me in advocating for the right of all terminally ill people to decide how they die. Share your story today.
Nancy Rhodes Johnson