MONTREAL – All that Weifun Chang wants for Christmas is to live.
That, and maybe have the strength to hold her 22-month old son.
The 30-year-old woman hasn’t been able to do that for the past few months because she couldn’t move her left arm. She has also had difficulty walking.
Chang was diagnosed with a brain tumour in June 2008 and since then has undergone radiation and chemotherapy.
“We don’t know if it’s the radiation, if it’s dead cells in my brain that’s causing damaged blood vessels that’s leading to the weakness in my left arm – or if it’s a new tumour,” she said.
She made the comments in an interview last week in her suburban Montreal residence.
The couple’s modest home was a bit noisy that day with the sound of their sick infant’s coughing and crying.
By the end of the hour-long interview, Chang was so exhausted her eyes gently closed as her head slumped unto her husband’s shoulder.
She was two days away from surgery that could prolong her life.
Three times during the past year, doctors have told her they thought the tumour was coming back – three times, they were wrong – her 36-year-old husband, Frederic Messier, pointed out.
Chang just wants “the scares to stop.”
“I’ve been praying for a boring week for four months, praying for a boring week where nothing happens,” she said.
But something always happened.
“The baby has gastro, I get a cold, we have grandparents who are sick, we have medical appointments that get cancelled,” Chang said.
She and her husband’s life changed forever last year just one day before the couple were to return to home from Taiwan.
They went there for a five-week vacation to show off their newborn to Chang’s family.
The date was June 24, 2008.
“I woke up after breastfeeding my baby, I don’t remember much, but I think my husband found me convulsing in bed in a generalized seizure,” she said.
“Prior to that, there were absolutely no symptoms. It came out of nowhere.”
Chang then underwent surgery and doctors in Taiwan found the tumour to be malignant. That led to six weeks of radiation therapy.
After a brief recovery, she returned home where she then had to endure chemotherapy for 14 months.
Chang has been getting support from family and other young cancer patients who have dropped by to chat and help with the cooking.
But, along with the battle with cancer, they also share another problem: They are all young people who feel abandoned and have slipped through the cracks.
“People think that cancer is an illness for old people and really, when me and my fellow young adult cancer survivors sit in (hospital) waiting rooms, we feel isolated,” Chang said.
“We’re out of our parents’ homes, we should be working, we should be taking care of ourselves – this is what’s expected.”
Chang said support services to help young adults deal with cancer are only now emerging.
“What we’re hearing is that doctors just don’t believe that young people could be getting cancers like the way we’re getting cancers,” she said.
“For example my diagnosis is actually much more common in men who are 45 and older.”
Dr. Petr Kavan, a medical oncologist, says adolescents and young adults with cancer are an “underserved patient population” who don’t even take part in clinical trials.
“We really don’t know, even from a medical perspective how to treat these patients, if they should be treated as children or if we should treat them as adults,” he said in an interview.
But Kavan has been developing a program with McGill University since 2003 to help young cancer patients. He’s also working on national recommendations on how to better serve that segment of the population.
A 2006 report prepared by Cancer Care Ontario, a provincial agency, determined that approximately 10,000 cancers are diagnosed in young adults every year.
It also said almost two-thirds of young adult cancers occur in women. Of those, breast cancer is the most common.
Testicular cancer is the most common cancer in young men and melanoma is the second most common cancer among young adults.
Doreen Edward, a survivor of colon cancer, runs the VOBOC foundation, a charitable organization that focuses on cancer patients between 18 and 39.
Edward, 55, first set up VOBOC – Venturing Out Beyond Our Cancer – to help terminally-ill adults.
But she later switched her focus to the “lost tribe” of adolescents and young adults with cancer, who don’t realize how serious their cancer is.
“They only ‘get it’ when they’re almost in palliative care,” Edward said in an interview.
Her Montreal-based organization grants special requests and diversions to young people who lose their cancer battles.
Chang underwent surgery last Thursday and doctors successfully removed the dead tissue that they were after in her brain.
Her husband says his wife’s left arm, her left leg and the left side of her face “appear to be moving as well as before.”
But tumour cells were also detected in a sample that was taken by doctors.
“We’ll know more in early January,” Messier said in an email in which he thanked friends for their support.
Despite the fresh worry, the young family has planned some low-key celebrations over the holidays, Messier said Sunday.
Christmas Eve will be spent over a quiet meal with Messier’s parents and Chang’s mother. And on Christmas, they’ve decided to revel in simply being together as a family – Messier, Chang and their baby boy.
