Winnipeg brain cancer patient battles hard to make Tragically Hip concert
Glioblastoma has taken much of Joanne Schiewe's voice but she continues to share her journey
A Winnipeg woman with terminal brain cancer is fighting for her life — and to make it to the Tragically Hip concert Friday— after her condition recently took a drastic turn for the worse.
Joanne Schiewe, 35, has been a voice on glioblastoma, the deadly cancer Tragically Hip lead singer Gord Downie has.
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For more than a year, Schiewe's Stage 4 brain cancer has been stable, allowing her to live an active lifestyle, but in early July, an MRI showed three new tumours that have had recent, devastating impact.
"For something to turn as quickly as it has, it's … scary," she said.
Schiewe, a self-described diehard Hip fan, spoke out about her excitement that Gord Downie and his band would touch down in Winnipeg when on tour this summer, then of her frustration at not getting a ticket when the Winnipeg show sold out within minutes, then again of her gratitude when dozens of Canadians came forward to offer her their own seats.
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Now, she's fighting for each new day in order to be there.
"It changes so quickly. You think, 'OK, Gord Downie's going to be great by the time he gets here on Friday' … and um … it's not always the case."
The articulate, vivacious and optimistic Schiewe now has trouble speaking and showing emotion.
'Things shouldn't happen that fast'
"A week and a half ago we were preparing to do a half Iron Man [triathlon]. And now, we're not sure that Jo's going to make it to the concert. That's ridiculous. Things shouldn't happen that fast, but that's what this is," said Jared Spier, Schiewe's partner.
Spier has begun blogging and speaking more publicly about the impacts of glioblastoma because Schiewe is no longer able to do so as loudly on her own.
"It's a very, very aggressive type of tumour, and it twists in with the brain that's there, so it's very hard to extract or to go in and do a successful surgery," said Spier.
"You're never going to be a survivor, you're never going to be cured. There's no chance like that. It's not like having breast cancer or prostate cancer, where you've got a really good success rate. Less than five per cent with this type of cancer will make it five years," he said.
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Despite their grim reality, the pair remain hopeful that a new chemotherapy drug Schiewe is on will buy some precious time and restore some of Schiewe's spunk and independence.
The two are spending their days doing everyday tasks that now hold enormous meaning, such as grocery shopping, spending time with friends and family and enjoying live music together.
"This isn't something that's taking away our hopes and dreams, because everything is a bonus. But when it happens this fast, it hurts, because nobody can be ready for this," said Spier, tears welling in his eyes.
"Watching Jo struggle through this stuff and keep pushing … there's not many days that are dry-eyed days all the way through, but for the most part, the stuff that brings that much emotion is usually something amazing. It's Jo pushing through something."
Schiewe, who looked forward to getting married and having children one day, is just thankful she did find the love of her life, a man who hasn't left her side.
"He's been absolutely amazing … oh my goodness," she said, causing him to laugh and tear up.
"GBM, glioblastoma, stage 4 brain cancer — it doesn't have any survivors. It doesn't have people who can talk about the impacts of it. It doesn't have a voice," he said.
"Jo stood up to be that voice when she could, and now that her voice is getting quieter, it's our job to keep speaking for her and give her this chance to shout when we can."
There's no mystery about what she'd shout if she could.
"Donate, donate, donate," she said.
Schiewe has helped raised nearly $80,000 for brain cancer research. She's dedicated much of own time with the illness to raising awareness. The couple said their own experience with CancerCare Manitoba has been nothing short of amazing, so if people want to help, they should donate to there, with the added bonus that the dollars stay in the province.
'We're pushing for overtime'
Spier said in spite of their wonderful friends, family and shared experiences, their situation is undeniably sad. He had to pry to get Schiewe to tell him what was wrong when she sat quietly on Monday.
"She said, 'I don't want to die.' What the hell are you going to do with that? I don't want you to die," he said, looking at her and beginning to sob.
"But we've got control over what we've got control over and we can't control when we go," he said.
When Schiewe was diagnosed in February 2015, she knew recovery wasn't a possible outcome.
"She was given six months to 18 months," said Spier.
"We have two days until you're at 18 months," he added, looking at Schiewe and squeezing her hand. "We're pushing for overtime, basically, because we got another two days after that until the Hip concert, right?"
"We're just gonna keep going," Spier said.