I first noticed Dwayne Snook in the fall of 2011. I'd see him in the waiting room at the Odette Cancer Centre at Sunnybrook Hospital in Toronto. Sandy red hair with a mustache to match. Stocky and solid. A man you'd want on your side in a tug of war. He was always chatting with this or that patient. I'd hear the odd cackle of laughter. Seemed like he was a bit of a character.
Inside Sunnybrook's chemotherapy and immunotherapy ward, the vibe was generally placid. Many patients retreated into their own bubbles, reclining far back in their armchairs. Some wrapped themselves in blankets. Others listened to music, or fiddled around on iPads.
Not Dwayne. He was perched forward, ready to engage with anyone and everyone, flirting with the nurses, and cracking wise.
"Hey, get me some anesthetic," he quipped at one point to a nurse.
"I'm going to put some anesthetic on your tongue," she fired back.
I remember that anesthetic crack well. That was the day I finally met Dwayne. As we began to talk, I quickly realized that he and I had a few things in common.
We had been born – only three weeks apart – in August, 1973. We also had the same dangerous skin cancer – melanoma. And the same stage – III. We had been diagnosed within days of each other, in June, 2011.
Being diagnosed with Stage III melanoma in 2011 was akin to walking to the edge of a cliff, peering over, and then pulling back; you were brushing up against death. So much so that you got a feel for it . A glimpse into the abyss.
Stage IV, when the cancer has spread to a vital organ – bone, lung, brain – would be like stepping off the cliff. There was a possibility you'd survive the fall, but chances were, you were a dead man. When we were diagnosed, the median life expectancy for a Stage IV melanoma patient was a grim six months.
Dwayne and I started off in essentially the same spot, at the same moment in time, facing the same precarious odds of survival. But within 18 months of meeting, our paths would diverge in ways neither of us saw coming, and nobody could have predicted.
If you absolutely had to be diagnosed with a skin cancer, one of the better ones to get would be either basal cell or squamous cell, the two most common variants. Basal cells are found in the deepest layer of the epidermis; squamous are in the upper layers. Both cancers are slow-growing and highly treatable.
Melanoma is the one you really don't want. Highly aggressive, it is much more likely to spread. While responsible for only 8 per cent of skin cancers, melanoma accounts for 70 per cent of deaths.
Worldwide, it has been steadily increasing over the past 50 years in Caucasian populations. New Zealand and Australia, by far, have the highest rates (about double that of North America).
In Canada, rates for most cancers are stable or falling, but the incidence of melanoma has been rising: for men, by 2.4 per cent a year, between 2001 and 2010; for women, by 2.8 per cent annually, between 2004 and 2010. Only the incidence of thyroid and liver cancer has been rising at a faster clip.
Last year, roughly 6,800 Canadians were diagnosed, making melanoma the nation's seventh-most-common cancer.
Melanoma gets its name from melanin, the pigment that gives skin its colour, and is produced in the melanocyte cells in the epidermis. The disease starts when those cells start dividing uncontrollably. The majority of melanoma cases are believed to be due to DNA damage from ultraviolet, or UV, radiation, through excessive sun exposure. A history of blistering sunburns raises one's chances exponentially. Despite growing up in dreary Ireland, I had my fair share of them.
Those most at risk are the fair-skinned, blue-eyed and freckle-faced. Check, check, check.
COURTESY OF NIALL McGEE
A 50-50 chance that the cancer would come back
My melanoma had shown up, without much fanfare at all, as a skin-coloured, pencil-eraser-sized bump on my right arm, just below the T-shirt cut-off, in mid-2010. I waited almost a full year to get it checked by a dermatologist. Unbeknownst to me, a dangerous tumour had been growing in two directions: outward, piercing my skin (ulceration) and inward to a depth of 3 millimetres. The deeper the tumour, the worse are a patient's survival chances. (Greater than 1 mm is considered intermediate-sized; more than 4 mm is considered thick). An ulcerated tumour also worsened my odds. Dwayne's tumour, which had cropped up on his right leg, had burrowed down 4.5 millimetres – but it wasn't ulcerated. Six of one, half a dozen of the other.
In the summer of 2011, Dwayne and I had undergone a number of similar surgeries. The first, to excise each of our tumours and a wide margin of tissue around them, had been done under local anesthetic.
It's a curious experience being fully alert when your arm is being sliced open. As the young surgeon cut into and then cauterized my arm, I gripped my wife's hand. Occasionally, I'd grimace, which was my sign to the surgeon that more anesthetic was needed. After the hour-long procedure was complete, I looked over to see a big bloody clump of my flesh resting in a vial. There it was – cancer incarnate.
Despite the gnarliness of it all, I felt great relief that the malignancy was (hopefully) out of my body, and immense gratitude toward the surgeon.
Unknown, though, was whether the cancer had spread. Lymph nodes, the bean-sized organs that function as filters for disease in the body, would be the next logical port of call for my melanoma. A few weeks later, under general anesthetic, surgeons removed a half-dozen lymph nodes under my arm. Right before I went under, one of the surgeons joked that "there'd be no tennis for a while." I was sent home with a large wound and a bag full of powerful analgesics. Recovery took about about eight weeks.
A few weeks after the surgery, I got a devastating piece of news: Two of my nodes had tested positive for melanoma, and it was possible that the cancer had spread even farther. Soon after, I was back in the OR for an even bigger surgery, to take out a huge swath of 48 additional nodes. This procedure required an overnight hospital stay and the insertion of an uncomfortable drain in my arm that would stay in for about a month.
Shortly thereafter, I got the first piece of good news in months. The cancer had not spread any farther. At that point, my staging was determined: Stage III, with a high risk of a recurrence.
My compadre Dwayne was in the exact same spot. The relapse risk would be particularly acute for both of us in the first two years: There was a 50-50 chance the cancer would come back. Essentially a coin toss to see if we lived or died.
When you're diagnosed with cancer, mountains of numbers and statistics are readily available, if you want to go there – and not everyone does. Five-year survival rate, odds of a recurrence, percentage increase in survival in doing one course of treatment versus another, surgical risk, risk of doing nothing at all.
For me, there was no such thing as too much information. I set up a Google alert on "melanoma." During appointments, I barraged my oncologists with questions. Then I pored over their notes from those appointments, which were available online. My father-in-law also paid to have a private medical service take a second look at all my biopsies, surgeries and treatment options. I devoured the 50-page report that came back, comparing it with the information I'd been given at Sunnybrook. The two were almost identical.
But access to all the information in the world gave me only limited peace of mind. Complicating matters was the realization that melanoma is a kind of phantom. For unknown reasons, the disease behaves in a more unpredictable, random and surreptitious fashion than many other cancers. Scouring cancer forums online, as I often did in the early days of my diagnosis, I'd find anecdotes about patients who had started out with bleak odds, yet somehow survived. Conversely, others diagnosed with early-stage disease, and then seemingly cured, saw their cancers come back aggressively, out of nowhere. Even the oncologists themselves especially dread getting this kind of cancer. "You talk to other oncologists," one of them told me. "A lot of them are like, 'I never want melanoma.'"
On the research front, advances and retreats
Dwayne and I happened to be diagnosed at a critical juncture in the history of melanoma. Before 2011, oncologists had depressingly few options for Stage IV patients. Chemotherapy, the standard of care for advanced disease since the 1970s, was ineffective. In the 1990s, an immunotherapy drug called Interleukin-2, or IL-2, was introduced as a kind of Hail Mary treatment for a small subset of patients. IL-2 essentially turbocharged the immune system to destroy rogue cancer cells.
Very few people could go on IL-2, however, due to its extreme toxicity. Patients needed to be hospitalized for a week at a time, and monitored for such side effects as organ damage, heart complications and low blood pressure. Tantalizingly, about 5 per cent of IL-2 patients went into long-term remission. As bleak as the landscape was back then, oncologists at least knew that, in certain instances, melanoma could be vanquished.
At the turn of this century, scientists pulled back the curtain on the genetic blueprint of the entire human body. Because cancer is fundamentally a genetic disease, one of the biggest beneficiaries of the Human Genome Project, completed in 2003, has been oncology. In the years that followed, the genetic sequencing of disparate cancer tumours paved the way for genetically tailored medications. Unlike chemotherapy, which indiscriminately obliterates huge swaths of cells, these targeted drugs zero in on specific cancer-causing mutations within cells. They are, in effect, heat-seeking missiles for cancer. Vemurafenib, a drug that targeted the BRAF mutation – which is found in the tumours of half of melanoma patients – was one such missile.
In the late 2000s, a large cohort of seemingly hopeless Stage IV patients taking Vemurafenib in clinical trials began to experience dramatic remissions. In some cases, metastatic tumours (when the disease has spread to distant organs) simply vanished. Half of patients responded to the drug. Vemurafenib, however, had a vulnerability. Eventually, tumours developed new mutations, rendering the drug ineffective; most patients saw their disease return. Still, people on the new medication survived more than three times longer than those on chemotherapy. Vemurafenib, which was approved by Health Canada in February, 2012, was an important step forward.
The same month Vemurafenib was ushered in, a new immunotherapy medication was approved by Health Canada that looked even more promising. Called Ipilimumab (ipi), it had some similarities to the old IL-2 medication from the 1990s, but with significantly fewer side effects. It also worked for many more people. Clinical-trial results stunned oncologists: Just under 20 per cent of Stage IV patients on ipi were still alive and doing well after seven years.
Ipi also had something else going for it. Unlike Vemurafenib, which required that patients have a specific genetic mutation in their tumours, anyone could take it.
'I have to admit that this last stretch has been tough'
While cutting-edge medications were being rolled out for Stage IV patients, treatment for Stage III patients such as Dwayne and me was limited, and hadn't changed since the 1990s. It was either "watch and wait" or start a year-long treatment on the immunotherapy drug, Interferon.
Interferon is a brutal regimen that takes a toll on the body and the mind. Being on the drug would be like having a never-ending flu. Chills, fever, headaches, fatigue, appetite loss, and low white-blood-cell count are standard side effects. If I chose to go on the drug, I'd also be monitored closely for any signs of depression, which occurs in 40 per cent of patients. The first month would entail coming to the hospital five times a week for intravenous infusions at an extremely high dosage. What's more, for all its severity, Interferon would add only about 3 per cent to my survival chances.
But I never hesitated for a second. I'd have done anything to tilt the odds in my favour. Dwayne felt the same way. We started on the drug within days of each other in November, 2011.
When Dwayne – with his twinkly blue eyes and big smile – rolled in for his daily interferon infusions, it was like Norm entering Cheers. Everyone was happy to see him, and he was on a first-name basis with all the staffers. He'd settle down in the chair next to me, both of us hooked up to IVs, and we'd chat up a storm. We especially liked to bitch about having to wear our "stockings" – the annoying and emasculating medical compression garments we'd been prescribed to ward off lymphedema (chronic swelling), a common side effect of lymph-node removal.
Though a lot of our chatter was of the whimsical variety, I got to know a little about the man, too. Dwayne had grown up in Wreck Cove, a village on the south coast of Newfoundland. That's where he met Tania. While it wasn't fireworks between them right away, the two souls grew on each other, and eventually married. Dwayne and Tania had two daughters, Renée and Rebecca, who were by then in elementary school. Dwayne was a cook in the army and had served in Haiti in 2004 after the coup d'état. He was currently stationed at CFB Borden in Ontario.
After our first month of interferon infusions ended, Dwayne and I continued treatment outside the hospital via self-administered subcutaneous injections at a lower dosage. He retreated to his home near the army base with his wife and daughters, while I returned to my house in midtown Toronto with my wife, Helen, and our three-year-old son.
We saw each other less frequently after that, but we kept in sporadic touch through e-mail. Oddly, I missed the social aspect of being in the hospital, the camaraderie that exists between patients. I missed seeing Dwayne. There was a loneliness to being at home that I hadn't anticipated.
In the spring, I felt well enough to go back to work part-time. Dwayne had not had as smooth a go of it. Interferon was doing a number on his liver and his white blood-cell count. "They cut my injections back because I was feeling very sick all the time," he wrote in March. "I'm not sure when I'm going back to work."
Only about half of patients who start interferon finish a full year of treatment. The stubborn Irish mule in me was determined to stick with it to the end. The way I saw it, my life was on the line, and this drug could be the difference between living and dying. The final few months, however, became a slow burn downward. Physically, I was deteriorating. I'd lost 30 pounds. My appetite dwindled. My mood was also getting worse.
"A little under eight weeks to go," I wrote to Dwayne in October, 10 months after we'd started on interferon. "I have to admit that this last stretch has been tough. The fatigue is bad and I'm dealing with depression. At this point, I'm just toughing it out and hoping the side effects go away when I'm done."
In November, we saw each other for the first time in months. Our Sunnybrook appointments had overlapped. The only difference was, while he was there to see his oncologist, that particular day I was there to see a psychiatrist. At that point, I was careening into a full-blown clinical depression.
This time, the laughs were few and far between. Sitting in the cafeteria, we were more like a couple of sad sacks in a dive bar. I'd become gaunt from the weight loss, and hollow-eyed from sleep deprivation. Physically, Dwayne appeared to be holding up better than I was. He'd also recently returned to work part-time. Unlike my cushy, sedentary, television-news job, with Business News Network (BNN), his army work was physically demanding. He was on his feet for much of the day – and could handle it.
Still, I noticed that something wasn't quite right with Dwayne. In between sips from a water bottle to ward off the dehydrating effects of interferon, he told me that he, too, had mood problems. We consoled each other over the harshness of interferon, and looked forward to meeting again in the New Year – to raising a glass together, at a time when we'd both be done with this wretched drug.
Unfortunately, things didn't turn out the way either of us wanted.
Debilitating depression, disheartening tests
A few weeks later, I hit the wall. To salvage what was left of my sanity, I quit interferon cold a mere two weeks before I was due to finish it. I also went on disability leave from my job. But instead of the depression lifting, as I desperately hoped it would, things got worse. On Christmas Eve, with my four-year-old son, Cillian, blasting around the house, off the wall with excitement, I sat for much of the time slumped in a chair, unable to engage with anyone.
In the New Year, I lost my grip entirely. I was admitted to a Toronto psychiatric ward in a state of acute suicidality in January. Inside the hospital, I fantasized about my cancer coming back and killing me.
Although catatonic for much of the time, I was still capable of checking e-mail. "I got sick over Christmas and now I'm back at Sunnybrook," Dwayne wrote. "Give me a call and I will talk to you more about it."
Ha! The idea of my giving Dwayne a call was a scream. I hadn't slept in about a month and had long since given up the basics, like shaving, and brushing my teeth. Still, I was able to fire off a reply to his e-mail, and asked him what was up.
"Well, I'm not doing so good," he wrote back. "I'm in bad shape. My cancer is back in a few places."
Due to my deranged mental state, I didn't have what one might term a normal reaction to hearing that news. At that point, I wanted to be dead, and the way I saw it, there was far more nobility in dying of cancer than in dying by your own hand. I wished that I were him. And although I wrote him back words of encouragement, mentally I had checked out. I was too wrapped up in my own head to care about anyone but myself any more. After two weeks in the psych ward, I still hadn't made any progress, and I was beginning to think I would never get out.
Back at Sunnybrook, meanwhile, oncologists scrambled to get Dwayne's disease under control. The cancer was in his lungs, bones and liver, and he was in terrible pain. That newly approved, targeted drug Vemurafenib was a possible lifeline. To qualify, he would need to test positive for the BRAF mutation. Cruelly, the crucial test came back negative. He started chemotherapy in an attempt to slow the progression of the disease, with the hope of eventually switching to ipi, the immunotherapy drug that had showed great promise.
In February, my depression slowly started to lift, and after more than five weeks in hospital, I was discharged. About a week after I got home, I finally felt well enough to give Dwayne a call. I suspected he might be heavily medicated but I couldn't wait to hear his voice. He didn't pick up, so I left him a message. The next day, I got a call back.
"Niall, this is Tania, Dwayne's wife. I'm so sorry to tell you this," she said. "Dwayne died yesterday."
Shock and disbelief rifled through my core. I sat down, stunned, on my staircase. How could it have happened this fast? A few months ago, we were sitting across from each other and he was fine.
In the end, there was nothing that could be done to stop his cancer. It was much too aggressive. Dwayne was only 39 years old.
In the weeks that followed, the bitterly cold Toronto winter of 2013 gave way to brilliant sunshine and unseasonably warm March weather. I walked for many miles in the city feeling warm sun on my face. As my depression melted away in the open air, in my head I tumbled endlessly over the past few months. I felt jubilation because I had survived a great trauma. But I also grappled with guilt. I'd gone to war with a brother, but only one of us had come home.
After Dwayne died, I was keenly aware that my own cancer could come back, at any point, without warning. The following winter, when I developed a cough that persisted for months, I wondered if the cancer was in my lungs. A few months later, when I came down with intense stomach pain at work, I legged it over to the ER, fearing that a tumour was at fault. And I was back in the hospital again, not long after that, complaining about chest pain.
In all three cases, there was nothing wrong with me – at least nothing life-threatening. But that is the reality and anxiety of living in the cancer-recurrence-risk danger zone. Get a really bad headache, and part of you can't help but wonder if the melanoma has metastasized to your brain. It never stops. In the first few years after I was diagnosed, major life decisions were made with the hope that I'd survive, but the recognition that I might not. A move Helen and I had been contemplating got shelved. A major renovation on our house got put on hold indefinitely.
Good news in the fight against a killer
In the years since Dwayne passed away, melanoma treatment options have proliferated. A new wave of targeted drugs and immunotherapy treatments have been approved that work even better than did the first generation: seven new drugs for metastatic disease in the past five years. Life expectancies have been pushed out exponentially. Before 2011, only 25 per cent of Stage IV patients survived for a year. For those on the new generation of drugs, the comparable figure is 75 per cent.
In 2011, Dr. Teresa Petrella was the sole medical oncologist at Sunnybrook who specialized in melanoma. Two more have been hired since to help her handle the increasing amount of Stage IV patients now living dramatically longer lives. "It's a good problem to have," she told me recently, referring to her now chock-a-block clinic.
Still, despite the huge advances in treatment, the science has a long way to go. Between 30 and 40 per cent of Stage IV patients don't respond to any of the new medications. For those with particularly aggressive disease, of the kind Dwayne had, sometimes there's simply not enough time for the drugs to work.
Dr. Petrella has treated hundreds of patients over the years. As a kind of survival mechanism, often it's better if oncologists don't get too close to individual patients, because many do not make it. It's inevitable, too, that memories fade. But 3 1/2 years on, Dr. Petrella has no problem recalling a certain Dwayne Snook. "I remember him so well," she says. "The way he looked. Everything."
DEBORAH BAIC/THE GLOBE AND MAIL
Enthusiasm curbed by grief and respect
This past summer, I quietly breached the five-year mark since my diagnosis. Not only was I still alive, I was cancer-free. The best outcome I could have wished for. I put a brief post up on Facebook, announcing the milestone. If my next CT scans in January come back clear, I can be officially discharged from Sunnybrook.
Yet, as much as I want to jump up and down and scream from the rafters, my enthusiasm is curbed by fear. Melanoma has been known to lie undetected in patients for 20 years or more and then aggressively return. At no point will my oncologist tell me that I'm "cured". But that's okay. I'll take it.
I still think of Dwayne often. How could I not? A big part of the reason that I'm here, and he's not, comes down to one simple thing – luck. That coin toss could easily have gone the other way for me – even if the odds, so stacked against me early on, have shifted in my favour in the years since.
When I was first diagnosed with cancer, one of my great fears was dying before Cillian, then two years old, would remember me. Had I gone quickly, I'd have been a ghost to him for the rest of his life. He's now 8 – going on 18. We drive each other nuts sometimes. But if I go tomorrow, he will remember me.
So you see, I've already won.
Niall McGee is a reporter in Report on Business at The Globe and Mail.
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