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Killing Cancer: Kelowna news photographer flies south for treatment
When Sean Connor, the staff photographer for this newspaper, started seeing double last summer, he knew there was a problem.
While friends and co-workers had noticed subtle changes in his mood and behaviour, Sean chalked the whole thing up to a kink in his neck, eventually diagnosed as an injury.
There’s no denying seeing two images of everything is a problem, though, and the bizarre symptom wasn’t something an injury would explain away.
Within a couple of weeks, the lightening quick reactions of his doctors—first his family doctor, then the neurologist and surgeon— found him staring down a life-altering operation with a one in a million diagnosis.
“When I went to the neurologist, he thought I might be coming down with something similar to MS (multiple sclerosis), and he said I’m sending you for a CAT-scan,” Sean said.
“I hadn’t even got home from the hospital after the test when he called back. The good news, he said, is you don’t have this MG, myasthenia gravis, the disease like MS, but you do have a tumour growing in your brain.”
Sean was stunned. He hung up the phone and went straight to the computer to look up a chordoma tumour, the term his doctor had used.
“It was like, how bad is that? It was a nasty piece of work,” he recalled. “At that point I went, okay, this could be the end of the train ride.”
Thankfully, this hasn’t been the case.
Six months later, Sean has now completed treatment and is talking about things like returning to work next summer.
His short-term memory still fails him and he’s too tired just yet to withstand a full workday.
His cancer is near guaranteed to return—on average within seven years—but the exhausting journey to this reprieve has taught him there’s no telling what medical science can figure out.
And he’s quite keen to share what he’s learned.
Immediately following his diagnosis, Sean was sent to Vancouver to meet with neurosurgeon Dr. Ryojo Akagami, who would perform two surgeries to remove his tumour—one planned, the other an emergency repair.
Though one might picture a tumour as a solid mass, it’s actually a complicated growth that weaves its way through veins and arteries, pushing nerves controlling vital functions out of the way in its insidious advance.
Sean’s tumour had pushed through the dura mater, the outer layer of the meninges sac surrounding the brain and spinal cord.
When the first operation removed the bulk of the tumour’s insides, it shrank leaving a hole in that encasement.
“They had patched the leak with a chunk of skin from his thigh and so that leak was supposed to stop,” said his wife, Sandra, who has been by his side throughout the ordeal.
“We were supposed to be in intensive care for two days and then he was supposed to be move to a lower ward, but that wasn’t happening. I was wondering if he was going to leave the hospital. He was just getting worse and worse.”
With fluid leaking from his nose, spine and down his throat, doctors went in for another operation.
One hour became four and when they finally finished, the prognosis looked bright. His surgeons had managed to remove considerably more of the tumour, seizing the opportunity to skim the growth’s walls away from the inside out while they were in the surgery.
Radiation would be used to finish the job and kill the last bits directly beside the brain matter, too close for a surgeon to extract without damage.
The really unique thing was the rest of his treatment would be paid for by B.C. Medical, but carried out in California at the Loma Linda Medical Center.
A chordoma is a relentless bone cancer that occurs in the head and spine in people of all ages.
It can form in several places along the spine and, for cases in the head like Sean’s, is often called a brain tumour, though the tumour actually forms from bone in the brainstem, not the brain matter.
According to information provided by the Chordoma Foundation, only one in a million people are diagnosed with a chordoma, and there are no known causes or risk factors.
The only thing doctors know for sure is that people are born with this condition. It’s believed the tumour stems from remnants of something called the notochord, a rigid, temporary structure providing scaffolding for the spine in embryonic development. It is supposed to be absorbed into the body, though in chordoma patients, it is believed some remains.
When or if the tumour chooses to grow varies, and the prognosis for each patient is different. The doctors therefore consider the size, placement, age and health of the person before making predictions.
And while it could take up to 20 years to return, Sean has been told a recurrence is more than likely; and should it occur in the same place, doctors will not be able to treat it.
In layman’s terms, he only had one shot at the treatment, so his doctors sent him to get the most accurate form of radiation available following his surgery.
It’s called proton radiation and involves using a beam of protons, the positively charged subatomic particles, to irradiate the tumour and damage the DNA of the cancerous cells, preventing replication.
“Protons have a brag peak. So it enters with less energy, then it has its brag where the maximum energy is deposited at that point, and then two or three millimetres after that there is no radiation. So all the punch is given at the target,” explained Dr. Lilia Loredo, Sean’s doctor.
Because of their natural properties, the protons can be targeted far more effectively than traditional x-ray radiation, doing less damage to surrounding tissue and offering a more intense treatment.
Loma Linda Medical Center was the first hospital to receive the accelerator needed to deliver the therapy.
Although there are now nine of these facilities in hospital settings throughout the United States, Canada does not have a medical proton accelerator.
Life at Loma Linda
Loma Linda Medical Center is a very unique place, located in beautiful San Bernardino County.
In true earthy, California fashion, the entire campus is vegetarian.
As in Canada, patients who need it have access to a hospital social worker, but the dietitians and counsellors get to work immediately on ensuring their patients convert to as healthy a lifestyle as soon possible. The hospital’s motto is “to make man whole.”
“If you’re losing weight, gaining weight, they’re there to help with all those problems. There was one fellow there who was a smoker; they sent him through a quit smoking program,” said Sandra.
“Every Thursday you could sign up to go to a restaurant, there was a farmer’s market, a whole list of activities…They want you active and they gave you a book on everything that you could do in their area.”
From potlucks to Disneyland to a 70-person Christmas dinner they attended at one of the doctor’s homes on Christmas Day, every possible means of keeping the patients happy and surrounded by positivity was covered.
The hospital is Seventh Day Adventist and the church plays a role in keeping the activities rolling. And for international patients like Sean, there’s a team dedicated to streamlining their specific needs.
The vast number of the proton radiation patients are there for prostate cancer treatment and they come from all over the world.
Loma Linda studies in the last 10 years show the overall disease-free survival rate for these patients is 89 per cent with fewer side effects than surgery or traditional x-ray radiation.
And as a Canadian, that presented an interesting conundrum for Sean.
On one hand, he heard from patients firsthand who had to do their own research to find the treatment because they believe their doctors preferred local surgical options they could profit from.
Under a public medical system, this is never a concern. Sean can rest assured that B.C. Medical and his doctors did everything they could for him, even sending him on to another country for treatment.
On the other hand, he realized, a public medical system could never afford to send everyone diagnosed with prostate cancer—among the top four most common forms of cancer—south for treatment. It would bankrupt the system.
The Balance Sheet
Knowing that the absolute best treatment may be out of someone’s grasp was not a good feeling for Sean. On the other hand, having received the best treatment himself, he is very thankful. Unfortunately, it has cost him a significant amount of money.
Sean is on sick benefits through Employment Insurance and will soon go on long-term disability funding. Sandra has been off work helping him and, while paying their mortgage, the couple paid $2,000 per month for a furnished apartment within walking distance of Loma Linda for two months, average for the area.
The couple remortgaged their home and Sandra has since lost the job she would have returned to due to the economic downturn and the timing of Sean’s illness.
In addition, they’ve spent plenty of time spent in Vancouver with Sandra in a hotel, and there were travel expenses to get to and from California. The list goes on.
As such, a group of friends have organized a major benefit concert on his behalf.
The Sean Connor Fundraiser is Thursday, Feb. 2, 6:30 to 10:30 p.m. at the Kelowna Community Theatre by donation.
Performances from Sherman Doucette and Deb Stone are already on the bill.
The group are still looking for more silent auction item donations, any and all values, for which donors will gratefully be given credit that evening.
For more information on the event, or to donate to Sean’s cause or to donate items to the silent auction, please contact Heather McCullough at 250-808-0131 or Kim Calloway at 250-763-6397.