Not today, cancer: 6 stories of motivation from young survivors – National | Globalnews.ca

A cancer diagnosis at any age is life-changing.

But for young people, it can often feel extra unfair. It’s a time when their adult lives begin to take shape — they’re starting careers and families, working toward financial independence, travelling and setting life goals.

A cancer diagnosis for a young person also means they’re grappling with issues that might not be as pertinent to older folks: body image, dating and intimacy are all affected by cancer treatment, and there are often snap decisions that need to be made about family planning and fertility before cancer treatment starts.

At a time when they’re focusing on building more independence, a cancer diagnosis can force them into a place where they need to depend on others more than they would like. It can also be very isolating; because cancer is rare in those between the ages of 18 and 40, it can be tough to find peers who understand and can empathize.

To say cancer is an unwelcome interference is an understatement.

Global News spoke with six young Canadians who were diagnosed with cancer under the age of 40. They shared with us their stories of survival, how their lives were upended and how they’ve found the motivation to carry on, deal with the disappointment of dashed dreams and pick up the pieces of their lives after a crushing diagnosis.

Inspiring others

Kolter Bouchard, a radio host for 102.1 The Edge, was struggling with some typical life stressors and COVID-19 in 2020: his wife had just given birth to their first child, he was working from home and was in the middle of moving.

So, at age 28, when he felt a couple of bumps on his neck, the radio host didn’t really consider cancer despite it being one of Google’s top results for his symptoms.

“I had to convince myself that, no, it’s probably not that. I’m probably sick or it’ll pass,” Bouchard said.

But when the lumps multiplied and spread to the other side of the neck, he knew it was time to see a doctor — not an easy feat during the early days of the pandemic.

Soon, he had an answer: it was Hodgkin lymphoma. For a guy like Bouchard, who says he’s usually pretty good at handling emotion and uncertainty, the diagnosis was almost too much.

“I would explain situations to my wife and then I would break down in tears afterwards and just howl at the ceiling,” he said.

His daughter, only six months old at the time, was too young to understand, but Bouchard remembers being concerned about how his loved ones would react.

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“I think a lot of other cancer survivors or people experiencing cancer will tell you the same thing — it feels like you need to be there for people more than they need to be there for you.”

A month after receiving his diagnosis, Bouchard started chemotherapy. A few cycles in, he heard devastating words from his doctor: “It’s not working.”

His condition continued to worsen, and his doctors switched him to something called “salvage” chemo, a “dark and morbid term,” he explained, “because essentially what they are trying to do [is] to salvage your life at that point.”

Following successful clinical trials, Bouchard marked the start of 2021 by ringing the cancer bell, signifying an end to the gruelling treatment and his newfound status of “no evidence of disease,” or NED.

Bouchard has been very open about his personal struggles on-air and across social media, and what surprised him the most was his story inspired others into action.

He says at least two listeners went for testing after hearing his story, and both were diagnosed with their own cancers.

“As crappy as it is to hear that you are the reason why someone found out they had cancer, ultimately, I imagine how much worse could it have been if they continued ignoring it,” he said.

Bouchard said the lessons he’s learned while having cancer will forever shape his future.

“Do not feel guilty about people wanting to help you — they are your friends, your loved ones, even random strangers sometimes,” he said, adding that cancer patients need to treat themselves as the main character in the story, not others,” he said.

“There is nothing more important right now than you getting through this experience. On the other hand, for people wanting to help, be there for that person, but be there in a way that they need you to be there because we all need different kinds of help.”

Forging a different path

In 2010, at age 32, Alyssa Dickey was diagnosed with multiple myeloma.

“It was a long road to actually get that diagnosis,” she explained of her rare, incurable blood cancer. “I was misdiagnosed along the way for at least two to three years.”

According to the Canadian Cancer Society, myeloma often lacks symptoms in it early stages, making it difficult to detect. And when symptoms do appear — such as muscle weakness, fatigue and frequent urination — they are ones common to many illnesses and diseases, meaning patients often have a long path of tests and procedures to receive their diagnosis.

Despite working full time, going to school and being a young mom, Dickey said she was relieved when she was finally diagnosed. At least she knew what was wrong. Unfortunately, she had to take a leave of absence from an exciting new career due to her declining health and has still not been able to return.

Stepping back from a job is something young cancer patients often face in the aftermath of a diagnosis. Treatments can leave cancer patients with little time to focus on anything other than getting better or keeping the cancer at bay. Also, chemotherapy, radiation, surgery and other cancer treatments can cause extreme fatigue, brain fog and pain.

But the decision to take a leave from work or abandon a job completely can be devastating. Young people are often building their careers or working toward financial independence. Many are still paying off education loans, and have bills and rent to cover. There are unexpected costs associated with cancer, too, that may not be covered by health insurance.

“It was very devastating to all of a sudden lose this career,” Dickey said. “You’re beginning your 30s and for me, I felt like my adult life was starting. I had got my degree, I had got a job, I was dating somebody new.”

Despite it all, Dickey said she wasn’t going to let cancer get the upper hand.

“Inside I knew that I was going to get back to living my life and pursuing the dreams and the goals I had originally, it would just be on a different path.”

Now 45, she has been living with cancer for 13 years.

In that time, she’s become a patient advocate in an effort to help other people in her situation. It’s not what she expected in life, but volunteering her time and efforts to organizations like Young Adult Cancer Canada and Myeloma Canada has given her a new sense of purpose. Recently, she helped organize a cycling event that raised close to $30,000 for Myeloma Canada.

“I think initially, I got involved as a way of healing,” Dickey shared. “I just wondered how I can have such an advanced cancer and no one knows about it. I felt like I had to get my story out there.”

Time is a precious gift

Ariele Wagner’s diagnosis happened by accident.

In 2015, at the age of 25, she had been visiting her dad in the hospital around Christmastime. It’s an emotionally heavy holiday, even for folks without any additional stressors, and Wagner expressed unease to the doctors about having to leave her dad.

Her history of anxiety and depression only exacerbated the distress.

“I went to the emergency room and said, ‘I need to talk to someone, I’m 25, I think my dad’s gonna die, I don’t feel safe,’” she recalled.

The doctors agreed to keep her overnight, and she was given a full physical exam as a precaution. That’s when doctors detected a growth on her thyroid gland.

Results of bloodwork and other tests came back normal but Wagner, who lives in Quebec, was given an immediate ultrasound. She hid the emergency room visit and the lump from her family, not wanting to heap more stress upon them.

“I hadn’t told anyone at that time because my father actually had a quadruple bypass three days after my biopsy,” she said.

Days later, Wagner finally told her family and soon the doctors confirmed the nodule on her thyroid as cancerous.

“There was just numbness for the first couple of days,” she explained. “I think that’s where a lot of people don’t realize… it can happen to anyone no matter your fitness level, your diet, no matter what you do.”

While having to take time off work and school due to treatment appointments and surgery, Wagner said she realized how quickly one’s life can change in a moment.

“I felt like [my life] hit a brick wall,” she said. “I’m 25, possibly facing my mortality, and everyone else is still normal and acting normal. It made it very difficult to cope.”

Wagner had to place school and work on hold to focus on cancer treatment; the financial impact the disease has on her life made “everything that much harder.”

She was off of work for seven months, and had to rely on the government’s employment insurance and long-term disability coverage, which only paid a small fraction of her regular salary.

“My insurance was able to say that my cancer was a preexisting condition so they didn’t have to cover my medical leave,” she said.

In 2021, five years after being diagnosed, Wagner made the final payment on her cancer-related debt. She can’t even begin to estimate how much cancer has cost her, both financially and otherwise, and gets emotional just talking about it.

“My credit has (taken) a huge hit, which makes it hard to seemingly do anything now,” she said.

When reflecting on her journey and how she was able to cope, Wagner said that she asks herself that same question every day.

“A lot of people say ‘cancer survivors are so strong’ and I struggled with that concept for a very long time because I’m like, is it really strength?” she pondered. “If I didn’t get up and do what I needed to do every day, what other choice was there? It’s really about finding that willingness to continue on, despite everything, because today is a gift.”

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Despite her health struggles and having lost friends to cancer, Wagner stresses that time is the most important thing to her.

“That’s really our most precious commodity,” she said. “The one thing that we’re all guaranteed in life is death, but we live every day. It’s about realizing that and enjoying all the small little moments and all the small little things life still has to offer.”

Building a strong support system

Declan Smith was training for a half marathon, and mere days away from his 28th birthday he was diagnosed with colon cancer.

At first, when he started noticing some symptoms, Smith said he was too embarrassed to go see a doctor — an understandable reaction when symptoms appear “down there.” In fact, many people avoid colorectal screenings out of feelings of embarrassment, studies have found.

Eventually he caved and visited a doctor, then was scheduled for a colonoscopy. While waiting for the procedure, he made the mistake of Googling his symptoms.

When he got the unfortunate news of his diagnosis, his mother was devastated.

“She could barely stand, because it’s a parent’s worst nightmare to hear that their child has cancer,” said Smith.

Smith was scheduled for a complete colon removal on Christmas Eve. His dad flew in from B.C. for his procedure and his family scheduled Christmas early that year.

“I’m just grateful, because I’ve heard from friends within the young adult community whose symptoms were not believed,” he said.

Pre-diagnosis, Smith planned to pursue medicine and join the Canadian Armed Forces. Post-cancer, he’s been “medically incapable” of chasing that dream.

Nevertheless, Smith says he’s been able to hold on to motivation thanks to having a strong family and friends.

“I think for me, it was having a really good support system,” he said. “Having family and friends that were able to support me and focusing on what I needed to focus on. It was changing my goals and being OK with the fact that my health needed to be the goal.”

Cancer was not the only heartbreak in his life, however — in July of this year, Smith’s mother died.

“She was always louder and more fervent than just about anybody and so I think, as much as this will sound odd, that’s kind of helping me keep a positive outlook,” Smith said. “I know that was her wish for me was just to have that happy, full life despite the cancer, and so when I can stay positive and look forward to the future, it feels like I’m honouring her.”

On a bright note, Smith finished the half marathon he set out to accomplish. He also came out as transgender after his diagnosis, and is working to move forward healthier and happier than ever.

“Navigating through the world is something every young person has to do, and I wasn’t going to let cancer put a hold on myself and my life forever.”

Being your own advocate

Kirsten Efromov was just a child when she was diagnosed with acute lymphoblastic leukemia (ALL) in 1998.

“I remember my reaction vividly because I didn’t know what cancer was,” explained the Brampton, Ont., resident, who was just 10 years old at the time. “All I knew was that I wasn’t allowed to leave the hospital.”

Due to a fragile immune system, Efromov was pulled from school and stayed in the hospital for over a month to receive treatment.

She remembers the trauma of losing her hair and weight gain that came with being on steroids — both common side effects of chemotherapy. When she returned to school the following year, she struggled in her peer group.

“It was hard and I lost a lot of social skills, and even some of my friends, as I kept my diagnosis hidden,” she said. “I didn’t want people to know because I didn’t know how people would react. I had one of my friends even ask me once if it was contagious because we shared a popsicle.”

“I lost a lot of my childhood,” she said.

Efromov said she also faced a lot of bullying, from both her schoolmates and adults, which affected other members of her family.

1:22
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“When we would go out in public, my mom would hear other adults saying things about me and how my diet should be changed because I was so fat,” she remembered, recalling that she suffered the steroid-induced side effect of “moon face,” which temporarily leaves the face bloated and swollen.

“So it was those kinds of comments, I think, that made it hard for my mom, where it hurt me more hearing it come from my peers.”

It took three years of treatment to reach NED, and since then, she’s had two more cancer diagnoses — once when she was 14 and the ALL returned, and again when she was diagnosed with an unrelated form of oral cancer at 28.

Now 30, Efromov stresses the importance of being your own advocate in the medical system.

“We have this inherent belief that just because you’re young, you can’t get sick, but this is far from the truth,” she said. “Anyone can get sick, especially with cancer. So I would say to people who are not feeling well, or might think something else is wrong, to just keep pushing and always speak up.”

She also encourages other young people to seek out cancer spaces designed for them. For Efromov, attending Campfire Circle — a privately funded charity that gives experiences and community to kids and families affected by childhood cancer — was a small blessing.

“That allowed me to gain some skills that I probably would never have gotten, even if I didn’t get cancer,” she said.

Making the most of a bad situation

Johanna Stuehrenberg remembers waking up sick every day in the weeks leading up to her brain cancer diagnosis at age 18. But like many young cancer patients, her disease was misdiagnosed at first.

“I went to the local ER at least two times in a four-week period and the first time the doctor actually wasn’t impressed that I went there at night, saying it was an inconvenience to my parents,” she explained. “I came back a week later, saw a different doctor who recommended just taking Advil and Gravol to kick what they called a ‘bad virus.’”

“I got asked at least five times by a nurse if I was pregnant,” she continued. “They just shove you in a drawer and think that there’s nothing serious going on because you’re young.”

Stuehrenberg got to the point where she couldn’t maintain her balance and was rushed to hospital for an emergency CT scan. That’s when doctors discovered the tumour pressing on her brain.

She’d just started post-secondary education, and following her brain surgery, Stuehrenberg struggled in her classes. Because her cancer was found at a later stage, it impacted how the right side of her body operates, and has also affected her memory and comprehension.

“It’s those little things that a lot of people don’t realize,” she said of the devastating effects of her surgery and other treatments.

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NED for 12 years, Stuehrenberg now works for the Canadian Cancer Society, where she helps other cancer patients, especially younger ones.

“I can share my experiences and give some advice on where they can go after treatment, who they can reach out to and see what’s out there,” she said.

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Against All Odds: Young Canadians & Cancer’ is a biweekly ongoing Global News series looking at the realities young adults face when they receive a cancer diagnosis.

Examining issues like institutional and familial support, medicine and accessibility, any roadblocks as well as positive developments in the space, the series shines a light on what it’s like to deal with the life-changing disease.