Alison Stoneman was 31 years old when she was told to get her “affairs in order.”
“I didn’t really think that I was ready to put my affairs in order,” she said.
So, she didn’t.
Stoneman was living in Haliburton at the time and it was an ENT (ears, nose and throat) doctor who had given her that jarring advice.
She had just undergone a biopsy and had asked the doctor to call her with the results at her mother’s home in Barrie, where she was going to spend the weekend.
Despite the doctor’s suggestion, she went to her mom’s.
It was an appointment with Stoneman’s family doctor in Barrie that led to that moment. She wanted to get a bad case of eczema looked at.
During that appointment, Stoneman asked the physician to look at a sore on her tongue. She thought she had bitten her tongue, but the wound wasn’t healing.
Her doctor’s reaction when Stoneman opened her mouth was ominous.
“She gasped,” Stoneman recalled. “So, I was pretty sure it was serious.”
She was told it was a lesion, so the appointment for a biopsy was made.
The results showed it was cancer. She had a tumour on her tongue.
She was given an appointment with a well-respected doctor, Jonathan Irish, at Princess Margaret Cancer Centre in Toronto. She learned quickly she was in good hands.
“He is still making leaps and bounds in cancer treatment and cancer research and how they do surgeries. It’s been an absolute pleasure being his patient,” she said.
Stoneman was informed about a voluntary clinical trial, and she signed up for it. She thought at the time, “If this doesn’t help me, it’ll help somebody in the future.”
It was a blind trial. Some, including Stoneman, were chosen to undergo surgery to remove lymph nodes from the head and neck on the same side as the tumour. Others did not have surgery.
The hope was that by removing the lymph nodes, the cancer wouldn’t spread to them and throughout the body. Fortunately, that was the case for Stoneman.
“The clinical trial that I was part of in 1996 was so successful that it became standard procedure for people with cancer on their tongue,” she explained.
She also had surgery to remove the tumour, which resulted in her losing about a third of her tongue.
She had a skin graft to replace some of the tissue that had been removed. It helped with the healing, but it didn’t last.
While she was told she might never smile again, could have trouble speaking and possibly experience drooping in her face, one oncologist told her “the body is extremely adaptable.”
That adaptability couldn’t happen soon enough.
Not long after the surgery, Stoneman was at a bank machine. This was at a time when people still had to lick the envelopes before depositing money. She couldn’t stick her tongue out, so she had to wet her fingers to complete the errand.
It seems like a small problem when looking at the big picture, she said, but it was an example of how such a surgery can affect someone’s everyday life.
She doesn’t have that problem anymore, though, because “the body did adapt.”
While the cancer diagnosis was a first for Stoneman, she was well aware of the disease thanks, in a major way, to her admiration for Terry Fox, who was making headlines with his inspirational Marathon of Hope.
“Terry Fox was already my hero. I was a teenager who waited for the newscast, waited for the articles,” she said.
That was in 1980 — 16 years before her own experience with cancer — but she was still drawn to the young man and his mission.
“As a young teenage girl, first of all, he was cute,” she said with a chuckle, “but mostly, it was his incredible determination and his belief in what he could do. You don’t see 21-year-old men give up their lives and have such integrity.”
Fox wanted to shine a spotlight on cancer, but also on the importance of research.
He was talking in a very public way about something that wasn’t as openly discussed as it is now.
Even when Stoneman’s grandmother had cancer, she and her friends “whispered about the ‘big C.’”
“Terry Fox helped us all with that because it was front and centre. Here’s a man with cancer, and look how vibrant he is and what he can accomplish,” she said. “You don’t have to whisper about it. It’s not like we did this to ourselves on purpose. It could happen to anybody.”
Fox’s strength and resolve were on Stoneman’s mind the day she was told to get her affairs in order.
“Whatever it is, we’re going to face it, and I think I’m going to prove this ENT guy wrong,” she thought at the time.
While she had some difficult days after surgery, she thought about Fox and how he said he took his struggles a step at a time or a mile at a time.
“That’s just what you do. You get through this minute and then you get to the next minute and you deal with whatever it is then,” she said.
Not everyone has the same story as Stoneman.
Six months after her surgery, a friend, Michael, who was the same age as her and was diagnosed at the same time with tongue cancer, died. He had not been part of a clinical trial. He had surgery to remove the tumour but not the lymph nodes.
That experience only strengthened Stoneman’s commitment to speaking candidly about her experience and the value of cancer research.
“I want to talk about it. I want to make sure that other people know that clinical trials work, cancer treatment works. It saved my life,” she said.
It eventually led her to get more involved.
After moving to Orillia in 1997, she saw a newspaper article about the need for volunteers to help revive the Terry Fox Run in town. Linda Shepherd was leading the effort.
Stoneman and a friend offered to help and soon found themselves in charge of registration.
After Shepherd had been diagnosed for the second time with cancer, Stoneman accompanied her to Twin Lakes Secondary School, where Shepherd was set to speak about the Terry Fox Run.
She told Stoneman she wasn’t feeling well and had to leave — and that Stoneman would have to take over the speaking duties that day. Not a public speaker, she was terrified.
“I stood up there with my knees shaking in front of an auditorium full of students,” she recalled.
She later found out Shepherd was not feeling unwell; she was preparing Stoneman for one of the responsibilities that come with the role of a Terry Fox Run organizer.
Stoneman did assume that role, and she is still at the helm of the annual fundraiser.
Her advocacy has expanded in recent years.
In 2019, she was asked by the Terry Fox Foundation to speak to staff with the Ontario Institute for Cancer Research (OICR). They wanted to hear a patient’s perspective.
It had been a number of years since Stoneman had been a cancer patient, so she asked a co-worker with a more recent experience with cancer to join her for the virtual presentation.
A few days later, the OICR asked her if she’d sit on a patient advisory board for the Canadian Cancer Clinical Trials Network, whose mandate is to connect patients with available trials.
Stoneman agreed, raw from the recent loss of her cousin, Galen, who had melanoma.
“He was a fighter. He wanted to live and he wanted to do everything possible, and his doctor basically sent him home to die and said there’s nothing else we can do,” she said.
Galen’s parents eventually learned of clinical trials. He was accepted for one at Princess Margaret, but it was determined he wasn’t strong enough, and he later died.
“If his doctor had known about the trials or believed that the trials might help him and acted earlier, maybe it could have made a difference. That really gave me a great push to help other people with the clinical trials,” Stoneman said. “In Galen’s memory, I’m hoping to help other Galens so they don’t have to go through as horrible a time as he did.”
All of Stoneman’s work with the Terry Fox Run and the Canadian Cancer Clinical Trials Network is voluntary. Her day job is as publisher of the Canadian Donor’s Guide, an annual publication serving as a directory to fundraising organizations.
Sales are down during the COVID-19 pandemic because many charities are suffering, so Stoneman put her entrepreneurial spirit to work and created Inukshuk Enterprises. It includes Inukshuk Greetings — an online greeting card project — and Inukshuk Book Nook. The latter is “a book and gift shop for readers and people who love readers,” Stoneman explained.
As she focuses on her new endeavours, she is always reminded of her previous struggles, but also her victories. She has three scars from surgery, and she calls them her “tattoos of triumph over cancer.”
This month marks 25 years since that triumph, and Stoneman will be forever grateful for the doctors who helped her, the clinical trial that she credits with saving her life, and the inspiration of her hero, Terry Fox.
“There will be people who read this article who will be diagnosed in the future. I just want them to know that there’s hope,” she said. “Everybody that participates in the Terry Fox Run, anyone who donates to the Terry Fox Run or supports the Terry Fox Run is making a difference for people like me and you. People in our community are helped all the time by the dollars that are raised at those Terry Fox Runs.”
Those who want to donate to the Terry Fox Run can do so on Stoneman’s fundraising page.
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