Less than 24 hours had passed since she got a cancer diagnosis.
Judy Duncan-Olds still was processing what she had been told. She hadn’t formulated her questions, met with her oncologist or done any research when an office called to schedule an appointment to put in her port for chemotherapy to battle her stage 3 anal cancer.
She was flabbergasted and angry, and told the scheduler she was not having a port, and was not having chemotherapy, and not to call her again.
“You can’t do that,” the caller said.
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“Watch me,” Duncan-Olds said. And she hung up.
That was a year ago. Her latest scan this winter shows no signs of cancer, but the radiology treatment is still wreaking havoc on her system. Duncan-Olds, the executive director of Youth Connections, said she hopes her story encourages cancer patients to make their own decisions and ask questions, think about their quality of life and, yes, talk about a type of cancer and bodily functions that usually go unmentioned.
This was her body, and her cancer, and she intended to fight it her way.
Before her diagnosis, Duncan-Olds had suffered from rectal bleeding that grew increasingly worse. She was in Florida being married to her husband, Larry Olds, in September 2016 when she filled the toilet with blood. She’d had colonoscopies previously and had regular mammograms, and had quit smoking. Another colonoscopy was in order.
The results showed anal squamous carcinoma, and she knew that the oncologist and radiologist she was being referred to would order chemotherapy and radiation.
She wanted to talk about holistic treatment, but her first doctor said that wouldn’t work. She asked about other options; he said there were none. She had smoked for 30 years and suffers from Chronic Obstructive Pulmonary Disease and a limited lung capacity. Would chemotherapy make it worse, she wanted to know.
Then she focused on the numbers and was told that the success rate for patients with her type and stage of cancer who underwent chemotherapy and radiation was 87 percent, compared to the success rate of 82 percent with radiation only.
Again, she pushed the doctor. She didn’t want chemotherapy, and the doctor didn’t know her, her quality of life or her beliefs. She rejected the plan of chemo-radiation as one word.
He said he couldn’t advise a course of treatment that didn’t include chemotherapy, and left. She had been fired as a patient.
But her radiologist — that was a person she immediately “clicked” with. He reminded her of what she needed to know, but respected her as a patient and a person who didn’t want to be hooked to a machine getting chemotherapy if it would only extend her life by three months, she said. Duncan-Olds wants life and death on her own terms.
She has made decisions her entire life, but suddenly felt in a situation that she had no control over, she said. Patients typically don’t question doctors, but she does, and remembers that it is the practice of medicine. She didn’t want to be viewed as a number or a dollar sign in the healthcare industry by people who hadn’t gotten to know her or her quality of life.
Her radiologist liked her style, and said she could wait until after the holidays to start radiation, and she showed up for her first 20-minute appointment at 4:30 p.m. on Jan. 4, 2017. The office was running two hours behind schedule. After a repeat the second day, she shuffled her schedule and took the 6:30 a.m. appointments. She had radiation for six weeks.
She had plans — she is active in community theater and had an upcoming play, a cruise was planned and she had a lot of work to do for a Youth Connections fundraiser.
By her fourth or fifth radiation treatment, she started experiencing pain and side effects. Her home was seven minutes from her treatment, and she couldn’t make it home without having to stop to use the restroom. She would get little warning.
And many times, no warning at all. One day, she had no control over her bowels, and the mess left her hysterical. She couldn’t continue, she told her husband. He had been waiting on this reaction, knowing she needed to go through the phases and process what was happening.
But Duncan-Olds remained stoic, only taking two days off work and keeping her appointments to recruit new Safe Place sites, raise money and oversee supervised visitations between parents and children. Youth Connections is a non-profit agency that advocates for youth and families in need in Johnson, Morgan and Brown counties and coordinates host homes for children in need, programming to help families in transition, mentoring and custody evaluations. Her work is important to her.
A person she refers to as the “lotion lady” forced her breakdown that those who love her knew was imminent. During an appointment, a woman offering lotions to help ease cancer patients’ side effects touched her on the knee and suggested that she rethink working during her cancer treatment and cancel her cruise. Her theater production probably wasn’t a good idea either, the lotion lady said, using phrases such as “I understand you think,” Duncan-Olds said.
The lotion lady made her feel like a victim, and she became so angry. She cried over her situation.
Her doctor reassured her. Go on your cruise, he said. If it burns, get out of the ocean. If you get tired, rest.
Duncan-Olds always considered herself a unique person, and found that her cancer made her truly unique; one in 8,000 people have anal cancer. It became more well known due to Farrah Fawcett, an actress who died in 2015 after a nine-year battle. Fawcett tried a holistic approach to healing, but her cancer had progressed too far for treatment after she finished that approach.
Duncan-Olds found no one in support groups who had experienced or was experiencing her type of cancer. Most support is for the more well known cancers, she found.
Anal cancer also carries a stigma that she tried to overcome.
“People don’t want to talk about it,” Duncan-Olds said. “And they don’t want you to talk about it either.”
When the hospital called for a survey about its performance, she offered plenty of constructive criticism, starting with the call to schedule the port the day after her diagnosis, and an overall assumption by medical providers that they know how she is feeling and too much of a focus on what she can’t do because of cancer.
A cancer diagnosis merged two worlds for Duncan-Olds. Before coming to Youth Connections, she had worked with neuromuscular-affected children, then became a grief counselor. She had helped families and children who turned 18 and no longer wanted to live a life on a ventilator. But suddenly she was facing her own mortality and decisions about how she wanted to live.
She urges families to question doctors and evaluate what they want for the rest of their lives, especially if the cancer has progressed too far for any hope of a successful treatment. She hopes her journey reminds people that they have choices in their healthcare.
“You’ve got to live,” she said. “It was a real test of my belief system.”
She told her staff and the board at Youth Connections, and struggled to keep a sense of normalcy. She knows the location of every restroom in Johnson County and has likely had to discard her underwear in all of them because of the effects of radiation, she said.
“I tried to find humor in it,” Duncan-Olds said. “But it’s your butt. People don’t want to talk about their poop.”
She grew tired of her situation and felt like she had lost all dignity. Her pain levels soared, and at times, every step hurt.
Her scan in May showed that the cancer had gotten smaller, but it needed to disappear, doctors said. The radiation would continue to work in her system for six to eight months, and her scan late last year showed no signs of cancer at this time. She’s glad she questioned her doctors and made her own choices.
“This is the last decision you will ever make,” she said. “Make one that will work for you.”
