One in a million: Sask. mom reflects on her fight with rare cancer

WARMAN, SASK. — JJ Zimmer is like many other mothers across the province.

She spends her days shuttling her two daughters between activities, juggling work as a teacher, managing household chores, and trying to squeeze in moments of self care, all while keeping her family’s routine running smoothly.

It’s hard to imagine that just two years ago, doctors gave her just a 15 per cent chance of surviving for another five years.

“I don’t take things for granted,” Zimmer said in an interview with 650 CKOM, reflecting on how her perspective has shifted since being diagnosed with a form of cancer so rare it affects just one in a million people.

“You know, that sounds so cliché, but when I go outside I feel the sun on my face or I look at the frost on the trees… I just take in those little moments. It sounds so simple and silly, but those little moments make up a good life.”

Listen to Zimmer on Behind the Headlines:

Zimmer’s daughters were six and four years old at the time of her diagnosis with stage-four appendix cancer. (Submitted)

In the summer of 2022 Zimmer began experiencing what she described as a stitch in her left side.

“Honestly, it was so minor that I felt ridiculous even making an appointment about it,” she recalled. “But I did, and when I saw my doctor he kind of tapped my stomach and sent me for an ultrasound, and I didn’t think anything of it.”

What she expected to be a routine check turned into a life-changing moment. The ultrasound revealed a mass in her abdomen.

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A one-in-a-million diagnosis

The mass was appendix cancer — stage four.

“It starts in your appendix,” Zimmer said. “Then it spreads this mucinous jelly through your abdomen.”

The condition is often only discovered at an advanced stage. What makes it so difficult to catch early is that there aren’t a lot of clear symptoms.

“A lot of my symptoms, I kind of wrote off as perimenopause. I was having night sweats, I had that stitch in my side, I was tired all the time — that could be anyone, right?” Zimmer noted, remembering how her exhaustion was partly due to raising her young kids, ages four and six at the time.

“I didn’t really think anything of it. It wasn’t on my radar at all.”

The rarity of appendix cancer is also part of what makes it so elusive. It affects only about one in a million people each year. This statistic stands in stark contrast to more common cancers.

For example, about one in eight women in Canada will be diagnosed with breast cancer during their lifetime, according to the Canadian Cancer Society. Lung cancer is also more prevalent, with one in 14 people in Canada facing that diagnosis at some point in their lives.

Zimmer said appendix cancer is often only discovered at an advanced stage. What makes it so difficult to catch early is that there aren’t a lot of clear symptoms. (Submitted)

Her oncologist explained the next steps: chemotherapy, followed by a major surgery in Calgary.

While many are quick to turn to Google for answers in times of uncertainty, Zimmer said she made a conscious decision not to search for statistics or information online.

“I just didn’t want to know,” she explained. “I didn’t want to go down that rabbit hole.”

Instead, a close friend stepped in to help. Whenever Zimmer had a question or felt overwhelmed by her diagnosis, her friend would take the lead.

“She would Google for me if I had a question, and she would also Google survivor stories,” Zimmer shared. “Every now and then, she would find people with the exact same pathology as mine — and they were years past their surgery.”

Those stories became a lifeline for Zimmer.

“That is the main thing that got me through,” she said.

After her diagnosis, Zimmer began six months of chemotherapy, 12 rounds in total, before heading to Calgary for a procedure called CRS-HIPEC, an aggressive combination of surgery and chemotherapy.

After six months of chemotherapy, Zimmer traveled to to Calgary for a procedure called CRS-HIPEC, an aggressive combination of surgery and chemotherapy. (Submitted)

“They basically take all your insides, scrape out any cancer they can find, remove any organs if needed, and then they bathe your abdomen in hot chemo for an hour,” Zimmer explained.

Zimmer said she left surgery without a clear sense of what was next.

“I asked my surgeon, ‘Is that remission?’” she recalled. “They don’t really use that terminology with me. It’s an incurable cancer. He said, ‘We got it all,’ but that didn’t calm my nerves. It was still a big unknown.”

At a follow-up appointment a couple of months later, the doctor suggested removing her chemo port.

“I didn’t want it taken out just to have it put back in again,” Zimmer admitted. “And the surgeon actually said, ‘No, think positive, take it out.’ And then I felt like I could breathe.”

While her cancer is considered incurable, Zimmer considers herself to be cancer-free.

“I like to believe I am cured. I just have to keep thinking that.”

Just over two years after being diagnosed with stage four appendix cancer, JJ Zimmer is thriving. She continues to be an active and involved mother. (Submitted)

Celebrating Rare Disease Day

Every year, on February 28, Rare Disease Day serves as an important reminder to raise awareness for uncommon diagnoses like Zimmer’s. According to Health Canada, one in 12 Canadians lives with a rare disease.

It’s a day to bring attention to conditions that often go undiagnosed or unnoticed, simply because they don’t fit the typical patterns doctors are trained to look for.

“There’s a saying in my circles on the Internet,” Zimmer explained. “Doctors are trained to see the horse, not the zebra. But we’re the zebras.”

The phrase she refers to comes from the medical world: “When you hear hoof beats, think of horses, not zebras.”

When diagnosing a patient, doctors are typically trained to think of the most common conditions first — the “horses” — rather than rare, less likely conditions — the “zebras.”

“Rare Disease Day helps us advocate for those rare stories,” Zimmer said. “It’s a reminder for people. If you know that something is different in your body, don’t ignore it and don’t put it off. And even if you feel silly, go and advocate for yourself, because you just never know.”

Zimmer’s one-in-a-million diagnosis has shaped the way she sees the world — with gratitude for even the smallest of moments. Whether it’s sunlight on her face or frost on the trees, these simple joys now carry profound meaning.

For her, Rare Disease Day isn’t just a time to reflect on the challenges of living with a rare cancer, but to honour the resilience it takes to keep going, and the unexpected lessons she has learned along the way.

Zimmer’s eldest daughter, Isla, was six years old at the time of diagnosis. Her fight with a rare disease has helped her view motherhood through a different lens. “It’s really hard now, when they say, ‘Can you snuggle for a bit?’ To be like, ‘No, you need to go to bed on your own.’ They’ll probably be sleeping with me when they’re 16,” she laughed. (Brittany Caffet/650 CKOM)