My Unexpected and Powerful Clinical Trial Journey
By DonnaRae Menard
On April 28, 2008, a doctor I didn't know walked into recovery and said, “You have cancer. It's terminal.” Later that evening, my surgeon—and friend—showed up at my house. He had been called into my emergency surgery, expecting me to be treated gently. My friend, Doctor Tilney, sat on a footstool, knee to knee with me. I had stage four squamous carcinoma of the sphincter. Easily treated in the early stages, but never found until the end. There was no standard of treatment. He sent me to one of the largest hospitals in the Northeast. They told me to go home, get my affairs in order, and enjoy the summer. That was the start of my quest.
Upon hearing the news, my sister, head of Radiology at Fletcher-Allen Hospital, Burlington, Vermont, told me to speak with Doctor Thomas Roland, Head of Radiology. Half an hour later, he called. We spoke for forty-five minutes. After that call, I drove through three states to arrive at his office at six in the morning. My sense of urgency was met with a promising development: over ten hours, we developed a program that included a trial drug, Mitomycin 5fu. I told him I had nothing to lose, and maybe someone else would have a chance. Cancer runs rampant in my family: I've lost all the major players except my maternal grandfather. I have ten siblings, five of whom have had cancer. Thirteen different types.
I had been carrying that cancer inside me for four years, dealing with extreme fatigue and unbelievable constipation, though nothing else. Within days I was having side effects I didn't know existed, including an immediate allergic reaction to the Mitomycin 5fu. My daily appointments were for 5:30 in the morning. That time is when small children typically were in the hospital for treatment. It was agonizing—I watched them die and could do nothing. I am no hero, but I am a mother, sister, and friend. As I went through the treatments and saw what happened to those young lives, my quest changed. My motto became “For The Children.”
“I know I was only one among many, but I felt elated. All I had gone through was suddenly validated.”
I spent weeks in the hospital in isolation. Everyone around me knew I was dying. Everyone, that is, except Doctor Roland. I told him about the banana box of manuscripts under my bed. He challenged me to live and get them published.
Today, I am cancer free. Not in remission—fully cured. While at the local hospital with a friend, a nurse who had been there on April 28, 2008, recognized me. She, like many others, thought I had gone elsewhere for treatment and passed away. Before I left, she came back. She'd looked into the drug and told me Mitomycin 5fu was now the standard for treatment of squamous carcinoma of the sphincter.
I know I was only one among many, but I felt elated. All I had gone through was suddenly validated. Now I meet with others suffering through treatment offering support.
My daughter has MS. She's onboard for a trial drug. We can't wait to be part of a new horizon.
DonnaRae Menard is the author of the It's Never Too Late mystery series, the Woman Warrior historical fiction series, and the Carmine Mansuer detective series. A former farmer, restaurateur, and United States postmaster, she splits her time between Vermont and New Hampshire. Learn more about DonnaRae and her work here.
