While people with chronic blood cancers can appear healthy, comments such as ‘You look great!’ can be unhelpful and dissuade them from disclosing their disease with others.
Only a few people in Stacy’s life know about and fully understand her diagnosis of chronic myeloid leukemia (CML). Her husband, co-workers, a few close friends and her extended family members know she has this chronic form of blood cancer.
The teacher didn’t tell her students why she missed two months of work in the spring of 2017 after her diagnosis.
And though she intends to talk to her children about it before they find out from someone else, Stacy, whose real name has been withheld to keep her identity private, hasnʼt yet told her seven-year-old daughter and four-year-old son that she has leukemia and will for the rest of her life.
“When I’m with my kids, it’s rainbows and butterflies,” the 39-year-old says. “Once they’re down [for the night], I deal with everything I have to deal with,” which Stacy says includes her medication’s side effects and her emotions. The Grade 3 teacher relies on her husband’s kiss every night at bedtime for comfort, even if she’s already asleep. “Everything is going to be okay,” he keeps telling her.
When Stacy sees her parents and siblings, she says she tells them she feels fine and her disease is fully under control. Even when the mother of two feels terrible and it’s not.
“It may seem strange that someone dealing with cancer would keep the information to themselves, but it’s quite common for people with certain blood cancers,” says Megan Norrish, community engagement manager for the B.C. and Yukon office of the Leukemia & Lymphoma Society of Canada (LLSC). Some of the estimated 128,000 people in Canada living with or in remission from blood cancers have a form that is chronic. They often require different treatment approaches than many tumour-based cancers and they can never be entirely cancer-free.
“The path is very different,” says Stacy, who underwent oral chemotherapy for two months that caused no obvious side effects – her hair did not fall out – after diagnosis. Then she began taking a tyrosine kinase inhibitor (TKI) pill daily, which helps control her disease further, but often triggers vomiting, muscle cramps and bone pain, among other side effects.
“It may seem strange that someone dealing with cancer would keep the information to themselves, but it’s quite common for people with certain blood cancers,” — Megan Norrish, community engagement manager for the B.C. and Yukon office of the Leukemia & Lymphoma Society of Canada (LLSC)
“I’m not the person with the bald head and the kerchief that’s going through treatment,” she says. “I don’t have the option of ever being cancer-free.”
CML is different from acute forms of leukemia, which are more familiar to people.
“These are invisible diseases that go through cycles,” Norrish says. Stacy’s CML and the more common chronic lymphocytic leukemia are both incurable, but they can often be managed by treatment.”
Despite having a chronic blood cancer, people can appear healthy. A response like “But you look great!” when someone discloses that they have cancer can be unhelpful and can discourage people from telling others, Norrish says.
Not only that, Norrish says, it’s exhausting to have to explain these complex diseases to your fitness instructor, neighbour and kids’ teachers.
Stacy doesn’t want her parents to worry about her, she says, so she always acts like everything is fine. She also wants her kids to have a normal and happy childhood. “I don’t want my children to be affected by this at all,” she says, and will tell them when they are in their teens or 20s.
Not telling her students about her illness helped Stacy return to work, two months after her diagnosis, and start getting her life back on track. “It brought back some normalcy,” she recalls.
The following winter, however, she had to take some time off work and begin therapy to deal with the anxiety caused by her diagnosis.
While many chronic blood cancers are treatable, and people with these diseases can live a long time, they always live under a cloud. Stacy knows that TKI is the only class of drugs that can treat CML, and worries constantly that it will stop working. Through LLSC, patients can arrange to see a psychologist or social worker to help work through the fears and anxieties of their diagnosis. The society also has support groups such as its peer-to-peer telephone program First Connection, which matches diagnosed patients and their families with survivors who can offer support and information by sharing their own experiences with the recovery process.
Stacy leans on those who understand her condition and what she’s going through. She can confide in her doctor and her therapist, but mainly it’s her husband who hears her deepest fears.
“I can just completely let go with my husband,” she says. “I don’t feel like I can let go with anyone else. The best thing I ever did was marry him.”
Learn more about the support offered by the Leukemia & Lymphoma Society of Canada by visiting llscanada.org/support.
As seen in the Globe and Mail on September 16, 2019