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Cancer, and all that comes after

North Vancouver couple faces down deadly disease
couple battles cancer

She noticed him because he blew his nose.

It was before the marriage, before three kids, and long before a two year trial with melanoma that threatened everything.

Half a century ago, Claudia was in the ninth grade at Point Grey secondary, noticing a boy treating his nose like Louis Armstrong treated a trumpet.

The teacher (correctly, as it turned out) thought Gordon was intentionally being disruptive.

For his part, Gordon liked the smart girl with the funny name.

Sitting at a North Vancouver cafe, Claudia Cornwall (formerly Wiener), laughs as she and her husband trade recollections and first impressions.

“She wore a sweater that exposed one shoulder, which impressed me greatly,” Gordon recalls, making them both laugh.

The couple married in 1971, settling in North Vancouver where they would organize canoe trips and bridge games and sip homemade blackberry wine. Gordon became something of a pioneer in the field of computers, running a company that made software for the railroad industry. Claudia was a freelance writer, penning books and magazine articles.

And then there was a lump.

It was about halfway up Gordon’s left arm, just above the elbow. It looked a little like a pimple. It looked like something he could ignore.

After all, he’d never been in a tanning bed – in fact he’d never once set out to get a tan. His working life was spent indoors, the couple didn’t go on tropical vacations and there was no history of melanoma in his family.

The lump didn’t go away.

A doctor said it looked like skin cancer. A dermatologist differed, judging it a squamous cell carcinoma.

The lump grew.

It was obdurate, Claudia recalls, growing as it became engorged with blood.

Eventually, Claudia found herself reading a pathology report that included the words: “invasive malignant melanoma, nodular type.”

“I became quite alarmed,” Claudia recalls. “I got up in the middle of the night and started reading up on nodular melanoma. I got even more alarmed.”

In her book, Battling Melanoma, Claudia quotes 19th century English doctor Thomas Fawdington, who wrote: “As to the remote and exciting causes of malnosis, we are quite in the dark.”

If melanoma had left medical science in the dark, nodular masses had often left them in the wrong room.

In Greek, melan means dark or black. Oma means tumour. But nodular melanomas, which can be under-diagnosed, are frequently lighter in colour. The elevated eruptions also tend to grow vertically, like a volcano rising from the ocean floor. They are very likely to metastasize.

Gordon’s diagnosis came just days before the couple were scheduled to fly to Australia. Claudia was doing research for her book Catching Cancer, an investigation into the viral and bacterial causes of the disease. A topic she had to remind herself was purely coincidental.
In Battling Melanoma, Claudia remembers the conversation immediately after the diagnosis of melanoma.

“It’s only a few days. I’ll be all right,” Gordon assured her.

“But I wouldn’t be,” Claudia replied.

She didn’t go.

Gordon’s lump was worsening.

“The danger was this thing going systemic,” Claudia says, describing the breaking skin over the lump taking on a “blistered, crusty appearance – evidence the malignancy was likely to spread.”

Claudia was determined to help her husband determine the right course of treatment. But figuring out the best way to treat melanoma, even among medical professionals, is open to debate.

Should radiation cover a broad swath of tissue, or be tightly targeted? How effective is chemotherapy? What about immunotherapy?

It’s a realm of medical discourse and disagreement Gordon calls: “the fog of medicine.”

They tried an immunotherapy infusion called Ipilimumab, but it didn’t seem to help.

A second lump appeared on Gordon’s arm. There was another on his right buttock.

“I had another PET scan. That turned up six tumours scattered around my torso,” Gordon says.

“It was pretty grim,” Claudia adds.

Gordon had essentially been told it was time to put his affairs in order.

But there’s something to be said for bedside manner, and by both Claudia and Gordon’s accounts, North Vancouver oncologist Dr. Sasha Smiljanic’s bedside manner was exquisite.

There was no cause for Gordon to spend his days like an inmate waiting for execution, he just needed something better, something stronger. He needed a new drug.
He needed MK-3475.

Despite sounding like a shadowy government program, immunotherapy drug MK-3475 was a breakthrough.

Oncologist Tony Ribas lauded the treatment, saying it was the first time in 15 years he’d seen patients respond with no nausea, no vomiting.

“There is no better personalized therapy than this.”

It was new, but it had enough of a track record to show its users weren’t “dropping like flies,” Gordon says.

“I knew I wanted this drug.”

But getting it was another matter.

After three denials from an Edmonton drug trial, the  couple were forced to look south.

“There was nothing going on in Canada,” Claudia recalls.

However, there was a clinic in Santa Monica running a trial for melanoma patients – just, as it turned out, not for melanoma patients as sick as Gordon.

The cancer had spread to his brain.

“They don’t let people with brain metastasis into the trial because it looks too bad, it skews the statistics,” Gordon explains. “It excluded me from the trial.”

“That was a really blue moment,” Claudia adds.

It was enough to make Gordon wonder if his fight with melanoma was futile.

“Maybe we’re just making heroic efforts here, and it’s not the way I should be spending my last couple of months on Earth,” he recalls thinking.

There was no pain from the brain metastasis, but Gordon was changing.

“I couldn’t type properly,” he says. “There were mild neurological symptoms starting to show up.”

While Gordon was wondering if he should resign himself to whatever came next, Smiljanic once more convinced the couple to rage against the dying of the light.

“Dr. Smiljanic produced a miracle,” Kathy recalls.

While the Canadian medical system had sometimes been frustratingly slow, Smiljanic arranged immediate brain surgery for Gordon.

He opted for stereotactic radiation following the surgery to kill tumour fragments without risking the cognitive decline associated with other radiation treatments.

After that, it was on to a drug trial in Texas.

They were four days past the deadline for acceptance into the trial, but as there were two vacant slots, Gordon got in.

“There were more tumours springing up by that time. I had one on my shoulder that I could feel, it was just under the skin.”

Gordon, a philosopher and author of the blog The Phantom Self, sees cancer as a cunning interloper.

“The cancer evades the immune system by sending a (chemical) message saying basically: ‘Don’t touch me. I am self. I am you.’”

The MK-3475 works by refusing to let the cancer’s message be imparted by receptors in the T-cells, sort of like sailors stuffing their ears with wax to avoid the lure of the siren’s call.

The effect of the infusion was close to instantaneous.

Gordon flew home after his first infusion and immediately thought he noticed a difference.

“I said, Claudia, am I kidding myself or is this tumour smaller. And she felt it and said, ‘I think you’re kidding yourself.’”

But the next day it was smaller again.

Gordon received five infusions and all of his tumours “kind of melted away,” he says.

“And he felt OK,” Claudia marvels. “It’s amazing that you can get rid of a tumour with less effect on your body than say, if you were getting rid of a flu.”
His recovery was so quick and complete that it even flummoxed a radiologist, who wrote a report that mentioned the large tumour in Gordon’s buttock had been surgically removed. It hadn’t. It was just gone.

“It’s a complicated question,” Gordon answers over an empty coffee cup when asked if the illness has changed his perspective on life. “I don’t really understand it, but after recovering from melanoma I became quite severely depressed.”

The depletion of his thyroid might have contributed to his depression. He was also taking “massive doses” of prednisone with the immunotherapy, a psychoactive steroid that made him giddy and manic.

One doctor suggested he might be suffering from post-traumatic stress disorder.

His mental state puzzled his wife.

“I thought, he’s recovered, he should be happy,’” she recalls thinking.

For Gordon, the two-year fight with melanoma was an “epic battle.”

“It gives you some purpose in life. You’re always making urgent phone calls and flying around.”

But when the battle was over, Gordon’s purpose was gone.

The depression isn’t uncommon, Claudia explains.

“Especially people who recover from a bout of very serious cancer. They come back and they think, ‘Oh my god, I have to pay taxes now.’ ”

The depression lingered for two more years.

Gordon and Claudia were at their place in the Cariboo. There was no electricity and the running water was supplied by pumping it out of the lake.

Bit by bit, Gordon built a water tower. “It felt so good to build this thing. That kind of helped me see the possibilities of life.”

As the interview winds up, the couple are getting ready to spend the last days of summer back in the Cariboo.

Asked if there’s anything else he’d like to say, Gordon embraces Claudia.

“I owe a lot to my wife,” he says.