At one time, Andrew Leitch celebrated the yearly passing of his cancer with a cake, and often with a visit to the Cross Cancer Institute’s waiting room where he once spent so much time. “I would sit there,” he says, “and all the stuff – the daily mess – would just stop and become unimportant.”
During his treatment, the usual regimen for lymphoma had had little effect. “My tumours grew back, putting me in a whole new category.” Doctors said they’d extract and freeze stem cells from Leitch’s marrow before putting him on a tough new chemo regimen that would knock out his immune system – and the cancer with it. Then they’d replace the marrow with his frozen cells, which would hopefully start making healthy blood cells. It was his one chance – “the hail-Mary pass,” as he calls it. (In football, when the quarterback is about to get creamed, he might just send the ball flying, with a hail Mary, in hopes someone will catch it.) His treatment ended on January 22, 1997, with a bone marrow transplant. It was apparent right away that the transplant was working, he says. Yes, he says, it was dramatic, if you go in for drama.
Today, Leitch is a communications professional at the University of Alberta and a father to two kids, seven and 11 years old. On the first anniversary of transplant, his wife gave him a re-birthday card. And for a good five years, Leitch would make his pilgrimage to that waiting room to reflect on the turn that put him from sickness to health. “But in the last five years, it’s been 50/50 that my wife or I will remember it,” he says. “Once the kids came along, I guess it took away some of that mental focus.”
How cancer survivorship is defined is a matter of interpretation, says Janine Giese-Davis, PhD, associate professor in the division of psychosocial oncology at the University of Calgary. Giese-Davis heads a multidisciplinary team (including researchers, physicians, oncologists, survivors and more) called CancerBRIDGES that researches and delivers evidence-based survivorship care. She considers survivorship to mean the period between diagnosis and death, however long or short that may be. Others say survivorship starts at the end of active treatment, which can be a difficult time for former patients, who often feel guilt for surviving where others didn’t and, ironically, for not savouring their survival.
“People say they ought to be happy, but often feel abandoned and frightened,” Giese-Davis says. Many patients have developed close relationships with their medical caregivers. Once treatment is finished, those relationships dry up. “It can be especially hard on rural patients with little to no local resources,” Giese-Davis says. Her group is at work on a number of initiatives to address the dearth of post-cancer care, such as training local peer support partners and improving online and in-person access to care.
With better treatment, some people are experiencing cancer as chronic or episodic. Treatments can have side effects, including other cancers, diseases or disabilities. In addition to emotional issues, survivorship challenges include returning to work, financial, social and lifestyle issues, as well as changes in physical abilities. Giese-Davis’s group addresses the lack of research documenting cancer survivors’ needs, post acute treatment.
Tricia Antonini knows all about cancer survivorship challenges.
In June 1997, she was 23 and golfing near Red Deer with PwC Calgary, the company she’d joined as a chartered accountant articling student. It was a long day and she lugged her clubs around 18 holes. At the end of the game, she passed out. She woke up in the Red Deer hospital, where they told her her haemoglobin had tanked and she had leukemia. A bone marrow biopsy confirmed it and, days later, she was getting her first dose of chemo through a central line into her heart. Eventually, she had a bone marrow transplant from her brother’s donated cells. For a while it looked like that might be the end of Antonini’s cancer story.
Really, it’s the start of a survivorship story that unfolds over many chapters.
In 2002, Antonini held a “Toast to Life” party that marked her five-year passage from cancer. She’d accomplished many of her career goals and worked to counsel people with leukemia and lymphoma. “At the party, I stood up and thanked my brother, my family and my doctors, and I said that we should all just celebrate every day, not wait for the big moments.” Three weeks later she felt tired and her mother said her lips looked pale. The cancer had returned.
Another transplant, from an unrelated donor this time, was followed by some complications and rejection episodes. By 2004, she was stable and had returned to work full-time and resumed peer counselling. Her company offered her the chance to work on an international project based in Manhattan. She loved New York and jumped at it. Memorial Sloan-Kettering Cancer Center agreed to monitor Antonini. “For a year I lived the New York life,” she says. “Then, I was getting ready for a trip to the Hamptons – how New York is that? – and I got a fever.” Cancer again.
Doctors at Sloan-Kettering said there was nothing that they could do that the Tom Baker Cancer Centre couldn’t and advised her to return to Calgary and her family. Doctors there gave her the choice of palliative care or another round of chemo to knock the cancer back. “I said, ‘Get that central line in,’ ” she says.
She had many complications, including near death from flesh-eating disease. She had to learn to walk – even swallow – again. Against all odds, she recovered. In 2007 she went back to New York to visit friends and dropped into Sloan-Kettering to see her (astonished) doctors. They were starting a trial for a new chemo-plus-transplant protocol and she found out she qualified. In 2008, Health Canada agreed to allow Dr. Chris Brown at the Tom Baker to administer the Sloan-Kettering trial. She underwent the new chemo and transplant with her brother as donor again, becoming one of few people in North America to have received a third transplant.
Today, Antonini’s back at work, working for PwC Calgary’s not-for-profit assurance practice and overseeing PwC Foundation activities in the Calgary office. “I have had an incredibly full life,” she says, much of it in the category of either cancer patient or in survivorship. “I have learned to live with uncertainty, and that’s OK.” In December, she’s going to Los Angeles with friends to see the finale of the hit reality show Survivor.
“It’s about balancing the energy you spend on fighting to live with the energy you spend on living,” she says. “Sure, celebrate those ‘cancerversaries,’ but I’ve been zapped by the five-year rule. I celebrate every day.”
Like Antonini, Leitch is now more apt to celebrate the smaller, more average moments in life. “You know, I find I don’t enjoy telling this story as much as I once did,” he says, reflecting on his survivorship. The milestones may have lost some magic. But he says, “There are dozens of times in a month that I think that I am glad to be here.”