Weeks after winning a silver medal in double-mini trampoline at the 2017 World Games, Tamara O’Brien felt a strange lump under her chin while watching TV in her mother’s Coquitlam duplex.
She received an ultrasound and a biopsy, but life went on as usual for the 20-year-old athlete who continued to train and then flew to Spain for another international competition, where she won silver again. After she returned home, she was summoned to her doctor’s office.
It was Friday, Oct. 13.
“The dermatologist says, ‘So they found melanoma in your lymph nodes.’ And I just started bawling,” O’Brien recalled. “It was this really weird shocking thing that was going on. I thought, ‘Oh my God I just got diagnosed (with cancer).’ I thought, ‘How am I going to tell anyone this?’”
O’Brien’s surprise is understandable, as it is relatively rare for someone her age to get cancer. Just two per cent of the new cancer diagnoses each year in Canada are in people 15 to 29 years old, representing about 2,250 people annually, says the Canadian Cancer Society.
As a result, experts say, there is a lack of programs, and sometimes even treatment, for these young people who are trapped between services for children and those designed for much older cancer patients.
“We are kind of the forgotten generation,” said O’Brien, who has Stage 4 melanoma.
“Most people think about their 20s as these years of figuring out their shit. And I feel like that all got taken away from me, right? I so desperately would love to move out of my house and start a career and think long-term with my boyfriend. But I don’t get to think about that — that’s not on my priority list any more. It sucks. It’s a really weird stage in your life to be diagnosed.”
O’Brien, who spent her childhood on her sport’s world stage, is now opening up about her difficult health journey. She hopes she can help other youth battling cancer who are struggling, as she initially did, to connect with people their own age.
“I was thinking: What do I want someone to take away from reading this story? A huge part of it is that my life isn’t sad. When people hear I have cancer, they must think, ‘Oh my God, that’s so depressing. She must be so sad. Her life must suck,’” she said.
“But, honestly, I’ve had some of my happiest days. … Your whole perspective changes when death sits right at your door. As morbid as it sounds, that’s true.”
O’Brien has her ups and downs, said her mother Tina Geulen, but “for the most part she is really positive. And she really tries to be.”
The pride in her voice dissolves into sorrow, though, when she talks about the injustice of this illness. “To watch this happen and not be able to have any control over the outcome and what is happening, is the hardest thing in the world.”
O’Brien has transferred her strong work ethic and determination to become one of Canada’s top trampoliners to her task of battling cancer, said former coach Curt De Wolff.
“I’m just so amazed by how it has brought out more passion for life in her,” said De Wolff, who coaches at the Shasta Trampoline Club in New Westminster.
“Sometimes you can look at something like this as an end, but I think it has almost been her second beginning. She has almost treated every day as a new beginning. It’s crazy impressive.”
By her own account, O’Brien has good days and bad days, days of determination and days of dark depression.
When Postmedia met with her just over a week ago, she was having a good day. But she was feeling “crappy” on Monday, when she posted on her blog that she just wanted to be “normal” again — although she wasn’t even sure what normal was anymore.
“Cancer at 22 is not ideal. Well, cancer at any age isn’t ideal,” she wrote. “I wake up some mornings so tired my eyes are literally glued shut wondering how I’m going to get out of bed. It’s a strange feeling knowing that cancer has taken up a huge part of my life and always will.”
The next day she was admitted to Vancouver General Hospital with abdominal pain, where she will remain over the weekend as doctors investigate what is causing her discomfort.
“I realize how powerful my story is to people. I think that is a huge purpose in my life, just being able to share and help, in whatever people decide to take out of my story.”
O’Brien had “an abundance of energy” when she was a toddler. “I used to stack stuff together when I was young and stand on it. My mother put me into gymnastics when I was two.”
She started trampoline at age nine and by age 10 was training 36 hours a week. She made the national team at age 11 in 2009, and competed that year in an international competition in Belgium. When she was 12, she won an unprecedented seven medals at the Canadian nationals, qualifying her for the world championships in Russia.
But the trip to Russia was going to cost $3,500 and O’Brien, who was raised by a single mother, didn’t think she could afford to go.
Publicity from her seven-medal haul led to Elaine Tanner, a 1968 three-time Olympic swimming medallist, offering to help O’Brien find funding, and eventually to Woody’s Pub in Coquitlam offering to sponsor the young trampolinist through its Dare to Dream Foundation.
“Her enthusiasm caught my eye,” pub owner Gordon Cartwright told The Province in 2009.
Woody’s Pub paid for all her travel expenses until she turned 18, for which both mother and daughter are eternally grateful.
“Without that she would never have been able to continue,” said Geulen.
She estimates the pub could have spent up to $40,000 supporting her daughter.
Medals piled up as O’Brien competed around the world.
“She was a very exceptional athlete. Amazing work ethic and very committed to what she was doing,” recalls coach De Wolff.
After she turned 18, O’Brien worked two jobs to continue to pay for her training and travel.
O’Brien’s discipline of double-mini trampoline — an acrobatic performance involving triple somersaults and twists, first on a mini-trampoline and then on a landing mat — is not in the Olympics, so the highest honour for her sport is the World Games very four years. When she became one of three Canadian trampolinists to qualify for the 2017 World Games in Poland, she changed her diet and trained even harder.
But something didn’t feel right.
“Every single day I was so tired,” she recalled. “I thought, ‘I just need to suck it up. I’m an adult now.’”
She put in the performance of her life, earning her best marks ever, and won silver for Canada.
“It was this really special moment because the hard work had paid off.”
After she returned home, she found the lump under her chin. It was near a spot where, the previous year, she’d had a mole removed that would test positive for melanoma.
“I never called it cancer. It didn’t seem like a big deal,” she recalled. “I never in a million years expected it would have turned into anything like it has now.”
O’Brien underwent an ultrasound and a biopsy, then focused on training for her meet in Spain in October.
Soon after, back home, she cried in the dermatologist’s office. “I never thought that this melanoma was going to come back,” she recalled thinking.
O’Brien knew her battle with cancer would force her to quit the national trampoline team and focus her energy entirely on her health.
While the vast majority of melanomas are caused by exposure to the sun or tanning beds, O’Brien grew up inside a gym and when outside always wore sun block. She is among the minority of melanoma patients whose cancer is linked to genetics, doctors have told her.
On Oct. 25, doctors removed the cancerous lymph nodes. “I had no cancer left in my body but there was a 50 per cent chance it could come back because it had metastasized,” she said.
She was told chemotherapy was not successful against melanoma, which made her happy because as a young woman with a boyfriend, she didn’t want to lose her hair.
But about a month after her surgery, a new lump appeared under her chin. The melanoma was back.
“So that was really awful to hear that I had recurrence six weeks after surgery. It was really, really aggressive.”
She would have four more surgeries, between January and March 2018, but doctors couldn’t remove all the stubborn cancer spreading microscopically through her neck. After a scan in April 2018, her oncologist delivered the worst news yet.
“She said, ‘You have spots in your lymph nodes, in your neck, under your armpit, in your groin. You have spots in your liver, you have spots along your bones. … It’s on your ribs. It’s on your vertebrae. It’s on your pelvic bone,’” a stoic O’Brien recalled.
The cancer was now Stage 4, the most severe.
The next day was April 20 — the date of the annual marijuana counterculture celebration — and O’Brien was starting immunotherapy treatment at the B.C. Cancer agency. “I remember joking, ‘It’s 4/20. I’m getting my drugs.”
Her body reacted poorly to the immunotherapy and the cancer worsened, leading to severe back pain that forced her last summer to quit her waitressing job.
Her grandfather took her to the B.C. Cancer to start radiation, where the staff assumed it was he who had come for treatment.
“I was like, ‘No, it’s actually me,’” she recalled. “The young adults are forgotten. There are supports out there, but I really had to look for it. Which is sad.”
One of the groups she found was Callanish, which provides a space for people to support each other through this life-altering disease. O’Brien counts on the group’s monthly drop-in sessions.
“You basically can sit there and bitch about your problems without anyone telling you how to be or that you can’t feel that way or that your feelings aren’t valid. Everybody in the room gets exactly what you are going through,” she said.
“They’ve helped me so much through my own struggles.”
But there is a need for more, said art therapist Sara Hankinson, who offers an art therapy program in Vancouver for young adults through the B.C. Cancer. Last week, she started an online group using Skype for young patients in other parts of the province.
Participants can discuss issues that are relevant to their lives, said Hankinson, such as body image or fear of losing their fertility after cancer treatments.
“Figuring out how to return to work can be a really big struggle for them. A lot of them are dating or in new marriages, which can often times be really challenged,” Hankinson said.
The challenges can also be medical for this age group, which is dubbed AYA, for adolescents and young adults, in health circles.
The survival rate for this group is improving, but not at the same pace as the advancements for children, said Dr. Karen Goddard, medical director of the Adult Childhood Cancer Survivorship Program at the B.C. Cancer.
“Some of the reasons are that AYA, in clinical trials and research, they are very under-represented,” Goddard said.
These patients often have one foot in childhood and one in adulthood and would benefit from a team approach. England has created special AYA clinics, and the B.C. Cancer hopes to develop one here, too.
“We need to bring adult and pediatric oncology together, so they can better look at treatment planning and psycho-social needs for these patients,” Goddard said. “I’ve talked to guys who say, ‘Everyone else (getting treatment) was over 60 and I’m here and I’m 25.’ They feel completely out of place and sort of abandoned and on their own. And cut-off from their peer group.”
Goddard is creating a program that would give young patients, after discharge, a document that shows their treatments, possible long-term health risks, and how they should be screened years down the road.
In the fall, O’Brien’s doctors put her on new pills that try to slow down the cancer, and they appeared to be working — although the nasty side effects include hair loss.
“I have had two stable scans showing disease regression, so things are getting smaller. They are doing their job for now, which is really awesome,” she said. “The problem with these drugs is that the cancer will become resistant to them, at some point, and it will start growing again.”
When that will happen and what she’ll do next remain uncertain, although her doctor is looking into a clinical trial in Toronto.
A GoFundMe page started for O’Brien last fall raised $16,000. She gave some money to her mom and thinks she may use the remaining $10,000 to fly back and forth to Toronto during the clinical trial.
Geulen is an on-call clerical worker for a local school district, a job that has given her flexibility to be with her daughter during appointments and hospital stays. But the less she works, the less she gets paid, often making it difficult to cover monthly expenses.
“This is just such a surreal life at the moment, and you can’t believe that it’s happening to you and you can’t believe it is happening to your child, and you can’t understand what you did to deserve this and what she did to deserve this,” she said.
After back pain forced O’Brien to quit her job last summer, she went on disability payments. She is grateful for the money, but notes she could never support herself on the meagre payments if she didn’t live with her mother.
“You are 100 per cent in poverty on disability, which I think people don’t even understand.”
She would like to get another job, but doesn’t have the strength to return to waitressing. “I’m trying to figure out what work would be good for me physically, and how I could make some money. So that is challenging right now, for sure.”
A highlight for O’Brien in the past six months was being the first recipient of the Forward Foundation, whose mission is to “provide young adults who are terminally ill with meaningful end-of-life experiences.” It was started by a remarkable young man, Christopher Cayford, while he was dying of cancer, and is now run by his mother, Claire Conde.
O’Brien’s chosen experience was to attend the 2018 Trampoline Gymnastics World Championships in Russia last November, so she could say goodbye to her Canadian teammates.
When she arrived in Russia, she received one heartfelt surprise after another: the Canadian team members wore “We Jump for Tamara” T-shirts, she was asked to be their flag bearer, and Olympic gold medalist Rosie MacLennan gave her one of the bronze medals the team won.
“I ended up walking away from that competition with the exact opposite outcome: It was not a goodbye. It was: My community is with me and they will always be with me,” O’Brien said, adding that she felt Cayford’s presence while in Russia.
“I definitely feel like he’s almost looking out for me. I feel like I know him but we never met. It’s super bizarre, and I’m not one to believe in stuff like that.“
For the last four months, since she returned from Russia, her cancer has been fairly stable. O’Brien has had two recent hospital stays: a two-week admission for a blood infection and her current treatment. To remain as upbeat as possible, she hung a poster board in her hospital room, and recorded the things for which she was grateful: her mom, nurses, friends who visit.
But the hospital stays taxed her spirit, which happens at other times, too. “I’ve had really dark days, days when I’ve been in the car driving and thinking this would be a good song at my funeral.”
She said, though, that she has good support from her mother, her boyfriend and some “true” friends.
Cancer, she jokes, can be “quality control” for relationships. Some people don’t know what to say and bolt, while others provide unwavering support.
“It was really, really hard initially getting diagnosed and thinking, ‘Well, this is my life now. So how do I introduce myself? ‘I’m Tamara and I have cancer.’ But it’s not a defining feature for me anymore.” she said.
O’Brien has now lived for one year as a stage 4 cancer patient — a thought that brings questions about her future but also relief that she is feeling more or less OK at the moment.
“I think it’s a celebration that I have had this year. And that hopefully I’ll have another,” she wrote on her blog. “I count my blessings each day because what else can you do when a huge chunk of your life is filled with uncertainty and with fear.”