Sitting at his Sparwood kitchen table in a Puma t-shirt and baseball cap, Barry Marchi looks like your average active, outdoorsy dad.
Until you look a little closer and notice the bruising on the 56-year-old’s arms from countless intravenous injections and blood tests, the small Terry Fox Run badge pinned to his cap, and the determined set of his jaw.
Behind Barry hangs a calendar filled with medical appointments scrawled in red pen while nearby is the “inspiration wall” with homemade posters bearing get well messages, inspirational quotes and important documents from his cancer journey.
“That’s my life right there, three years’ worth,” he said, pointing to the “war table” with its arsenal of medical records and research on diffuse large B-cell lymphoma (DLBCL) – the disease that has dominated Barry’s life since September 2015.
DLBCL is the most common type of non-Hodgkin lymphoma, however, treatments currently available in B.C. have not worked for Barry, a father-of-two and former mine worker.
After three different types of chemotherapy and an autologous stem cell transplant failed to yield results, he was told by doctors that he was refractory – untreatable.
The blood cancer, which presents itself in bulging tumours in every place imaginable, has flared up again, but Barry refuses to give up.
“They told me after my stem cell transplant failed that they basically classed me as palliative and the chemotherapy that I was on up until December is not going to cure me; it’s just buying me time and how much time is the million dollar question,” he said.
“And I said well jeez, that didn’t sit well with me. I’m not going to quit or give up, so I contacted the Leukemia and Lymphoma Society. I said ‘I need help, I need to go look elsewhere – the United States or Europe, or wherever’ because there are different therapies and different cancer treatments. I said ‘I’ll go lay in a mud pit in Africa and drink zambuca juice or something’… you’ve got to put out all stops.
“At 54, being told that there’s nothing for me in Canada, that I’m palliative. We’re all on borrowed time but it’s like man, I’m not ready for that. I want to beat this stuff, I’ve got too much to do yet, to live for.”
With the support of the Leukemia and Lymphoma Society, and his medical team in Cranbrook, Barry started investigating DLBCL treatments being trialled around the world.
Through his research, he discovered CAR T-cell therapy, which involves genetically altering the patient’s T cells – a type of immune system cell – so that they attack the cancer cells.
Barry applied to be part of a small trial in Vancouver but was rejected by the sponsor.
Now, he has his hopes pinned on getting CAR T-cell therapy in Seattle, Washington.
If successful, Barry will be among the first in B.C. to access this new, cutting edge treatment, which has shown promising results in blood cancer patients.
“Last New Years, I made a vow to myself and I says you know what, 2019 I’m going to the States,” he said.
“By hook or by crook, I’m going to get CAR T-cell and the Leukemia and Lymphoma Society has been guiding me through the process.”
The only catch is the treatment comes with a hefty pricetag of $1.1 million.
Barry is cashing in his pensions and was prepared to sell his home to pay for the treatment.
However, after lobbying the B.C. Government with help from East Kootenay MLA Tom Shypitka’s office, he has been approved for out of country assistance.
The news came as a huge relief to Barry and his family.
“I’ve had the best standard of care in British Columbia and Canada that you can get, so I’m grateful for that,” he said.
“I feel privileged and grateful that I’m still here, alive and kicking and I’m going to try the latest and greatest, the cutting edge.”
The road to Seattle hasn’t been easy.
After receiving initial consultations and treatment in Pincher Creek and Calgary in 2015, and 2016, Barry was told the Alberta Health Service was no longer accepting B.C. patients.
He was forced to travel to Kelowna or Vancouver for the remainder of his cancer treatments, despite having brothers in Lethbridge and Cochrane, and Sparwood’s close proximity to the B.C-Alberta border.
“I drove to Calgary, basically past the Tom Baker Cancer Centre where the scanner is, jumped on a plane and flew over the hospital again to go to Vancouver. It’s like, what’s with the system?” Barry mused.
On top of the inconvenience and expense of long distance travel, Barry has endured incredible pain, from the physical pain of 25 cycles of chemotherapy, four rounds of radiation treatments and an autologous stem cell transplant, to the emotional pain of losing fellow cancer patients he befriended and coming to grips with his own mortality.
However, Barry has always managed to look on the bright side.
He recalled one of his first visits to the Cranbrook oncology unit, where he noticed a young girl with a binder in her hand.
Barry quickly realized she was there to receive treatment and after asking around, discovered she was 12.
“Poor Barry? I’ve got 40 years on that kid, she’s there getting her chemo treatment,” he said.
“You don’t have to look very far to see somebody else’s struggle. I feel fortunate and grateful to still be fighting.”
Barry left for Kelowna again on Monday to undergo his fifth round of radiation therapy to ensure there are no secondary cancers.
If all goes well, he will start treatment at the Seattle Cancer Care Alliance hospital at the University of Washington Medical Center in July.
Barry has been told the median survival rate for DLBCL is five years. He’s in year four, so there’s no time to waste.
“I want to be the anomaly and be sitting here saying that was 15, 20 years ago, I’m still plugging away,” he said. “Time is of the essence for many reasons, the longer I wait the more the disease is advancing.”
Barry is a Sparwood Secondary graduate and as a high school student was well known for his achievements on the ice and in the boxing ring, playing hockey for the Elk Valley Raider Junior B Team and named B.C. Emerald Boxing Champion at the 1979 Golden Gloves Tournament.
He has always been community minded and over the years has coached hockey, captained a mine rescue team, volunteered for Sparwood Fish and Wildlife, and sat on the Terry Fox Run and Relay for Life committees.
Since starting his battle with cancer, Barry has taken care of his own expenses during treatment and declined any offers of financial assistance.
However, CAR T-cell therapy will require a two-month stay in Seattle, where Barry will pay for his own accommodation, food and travel.
On June 21, the Elk Valley community will have a chance to give back to Barry at a fundraiser at the Sparwood Golf Club.
It will feature a golf scramble, barbecue, silent auction and live music from 2 p.m., with all funds raised going directly to Barry.
Already, more than 150 tickets have been sold.
“It is pretty overwhelming the amount of people that we have signed up for this already and the amount of people who have offered to give silent auction items or just come, and volunteer their time,” said his daughter Melissa, 24.
“I know I feel overwhelmed by it, just the outpouring of support that my dad and our family has received.”
“It’s a pretty special place we live in,” added Barry.
He has shared his story to give other cancer patients and their families hope.
“I want to share that story so that people don’t give in,” said Barry.
“Because I’ll tell you what… I’ve had it all. Shocked and depressed, and angry and distraught, you name it. It’s been a rollercoaster of a ride.
“Once I relapsed and was told ‘you’re done’ basically, it deflated me, right? Took the wind right out of my sails. I fell into a pretty good hole and I climbed out of it, but it wasn’t easy… I’d be on the couch there looking at the pictures of my girls and say ‘get off the friggin’ couch’.”
Barry has gotten off that couch numerous times and his courage, strength, and resilience continue to amaze his family and friends.
“He’s the strongest person I know,” said Melissa, who is moved to tears. “Just seeing everything that he’s had to go through has made me really proud.”
Tickets to the June 21 fundraiser cost $75.
Silent auction items are still being accepted, as well as monetary donations. Contact Patsy Decker at 250-425-4198.