PART 2 OF 2: `A LUCKY MAN'
Journal writer reflects on cancer diagnosis
How do you reconcile matters of life and death?
Sometimes all you can do is go with the flow.
Back in September, time, memory and reality itself started telescoping in on each other as I spent weeks waiting to find out whether I had joined the ranks of the terminally ill, growing increasingly confused over several conflicting diagnoses.
Following 12 days in a hospital bed I came back from a surgical biopsy to be told that I had inoperable cancer. I will never forget lying there in the University Of Alberta Hospital that very long night of the soul, hooked up to so many tubes and monitors that it was almost impossible to move, thinking about the end.
Earlier that day I watched wildfires scorch the west coast on a tiny television screen. I read about the deliberate burning of Brazil's rainforests, and about pollution in the ocean. I don't know how they know, but scientists now think there's more plastic at the bottom of the ocean than there is floating on top.
I was anxious about rising political instability in the U.S. and the world at large, about the pandemic that had altered everything, starting with personal stuff like the end of my career in arts journalism.
I concluded that I was ready to leave this troubled planet.
By 2 a.m. or so I was still wideawake, planning the soundtrack for my wake, but this isn't the sort of thing you can reconcile overnight.
Fast-forward one week later.
It was a beautiful, sunny Saturday and I was up on the
18th floor of a downtown condo tower, working my part-time job painting home interiors. As I brushed white latex on the window frames of an empty abode it was impossible not to stare out at the stunning view of Edmonton's river valley at its autumnal peak. The Zen of painting strikes a nice balance to the mental work of writing and I'm told that I'm good at it.
As a favourite recording played in the background I suddenly felt as if I was encountering the sheer beauty of those sounds for the first time, all over again, and tears rolled down my face.
Checking emails afterwards, I got the notice “you have new test results at MYAHS Connect.”
That's the novel way I received my diagnosis. Glancing at the top of a list of lab reports, I took a couple of deep breaths and clicked on the latest entry, “Surgical Pathology.”
It's not every day that you stumble upon a moment that you consciously know could change your life and even less often that you get there in the click of a mouse. I was mentally prepared to go there but I'm not sure how many other people would choose to find out that way.
There it was in a paragraph about halfway down. “Invasive, metastatic adenocarcinoma.” One of the more common forms of cancer, it's usually referred to as lung cancer or pancreatic cancer or something tied to a specific organ. Oddly enough, in my case, there is no obvious point of origin. It's dotted over the inside lining of my peritoneal cavity (the sack that holds your abdomen in place), and over several organs.
The rest of the report was medical gobbledygook I couldn't understand. I spent an hour or so reading about adenocarcinoma before I was too exhausted to go on. Then, with a strange sense of relief, I made myself a nice dinner, watched an odd Norwegian movie, and called it a night.
That final word was supposed to come three weeks after the biopsy when I met with the surgeon to review the lab report from the procedure. It was almost certainly inoperable cancer, likely melanoma, they told me. But it might also be something rare like tuberculosis, maybe even curable. Short of occasional cramps I felt fine.
Who knew that the computers at the province's online information site Myahsconnect were working more efficiently than anyone could have guessed? I can't say for certain but I must be one of the first Albertans to be diagnosed with life-threatening cancer via an email alert, at home, alone.
Myahsconnect had its genesis over a decade ago as a means of bringing everyone's individual medical profile to their fingertips.
It's your body. You should have access to the latest numbers on your blood pressure or blood chemistry, or whatever.
I asked my doctor about this for years but the platform went through long delays. Then, once I was sick, I found out that it was operational online. I registered and got my results.
I was mentally prepared to go there but I'm not sure how many other people would choose to find out that way.
As if to confirm everything I got a phone message the following day from “a medical facility,” and when I called back a nurse answered “Cross Cancer Institute.”
She explained that a team there would be reviewing my case before I was ushered in for my orientation. “You did know you were being moved to palliative care?”
“Actually, no I didn't.” My eventual meeting with the U of A Hospital surgeon Dr. M was a bit anti-climatic but he did spell out a few details. The cancer had spread over the outside of my liver, stomach and colon.
My introduction to the Cross Cancer Institute felt kind of like going back to college from the phone call I got for “pre-registration” to the plastic ID card to the stack of literature I was given to take home after my orientation one morning in mid- October.
From the moment I walked into the Cross I sensed a subtly special level of care. Despite the Covid-careful environment, everyone introduces themselves with a tone in their voice that says, “I know why you're here and I'm ready to do everything I can to ease your experience.”
In contrast to my time at the hospital which was clearly under pandemic strain, everything felt very well-co-ordinated, never left to chance. It's no surprise that the CCI is considered one of the best cancer care centres anywhere.
Again, I felt strange echoes of my work as an actor doing patient simulations for the medical system but the script had never been so personal. There is no more serious stage to walk on to than this. Sadly, coincidentally (?) I met a friend with cancer sitting there at the Cross, also going through chemotherapy. As he told me, “it brings clarity.”
Like so many past simulations I was asked to disrobe and put on a hospital gown. I'm an expert at tying them up. Again I was asked to deliver my case-history several times. Five consultations with my team included meetings with a nurse-resident to set the groundwork, then my chief oncologist, a dietitian, a pharmacist, and another nurse to discuss the scheduling of upcoming tests and treatments.
My oncologist Dr. S. is an excellent character, totally dedicated. He was generous enough to sit and answer my questions for well over half an hour, though minutes in his smart watch kept beeping intermittently to indicate that he should be somewhere else.
“The cancer almost certainly arose in your colon,” he explained, “probably from some stupid flat spot that got away. It is treatable and I would typically use colon cancer drugs in this setting.”
Then he got down to the nitty-gritty.
“You're going to die from this at some time. Technically, I have to say that you're at risk of dying in six months, but God willing, you're not going to die on my watch in six months. You're not likely to die tomorrow, or next month or the following month. You can do whatever you feel like doing.”
If I just chose to address my symptoms, my quality of life, things easily might be over in six months. But with the program of chemotherapy he planned, some people in my situation had seen a retreat. I could still be around for as long as 18 months, he said, maybe even two years.
Dr. S. sketched out two helpful analogies to explain the behaviour of what I've got going on inside. It's not a pretty picture.
Imagine a forest of small mushrooms that have sprouted all over your peritoneum (that sack that keeps your abdomen in place). Imagine that these growths are very sticky, that they stick on to other organs. That's how I came to have a partially blocked upper intestine, nausea and vomiting in early September, when something sticky caused a kink in my system.
His other analogy: imagine something like sea barnacles that attach themselves, turning a normally soft and supple intestine into something closer to a lead pipe.
I have rarely taken any regular medications in my life beyond vitamins, but now I've been fast-tracked to a palliative drug plan. He listed off the possible side effects: nausea and vomiting, mouth sores, bleeding, hair loss, fever, fatigue, diarrhea and constipation, brain fog.
“There is no good way of predicting side effects, other than, if it doesn't happen the first time, you've run the gauntlet, you're free and clear, and it will never happen again.”
I was lucky, he noted. Despite being overweight, I don't have pre-existing conditions such as high blood pressure or diabetes common to many people my age, which complicate treatment.
Because it is anticipated that I will be on chemotherapy for the long haul I got the latest technology to receive it. Days before the first treatment a small surgical procedure was performed under local anesthetic. As the surgeon hummed along to Fleetwood Mac, a triangular “power port” was installed in the right side of my chest, somewhat comparable to the size of a pacemaker, with a special catheter that leads directly into an artery of my heart. I got a preview of all this in “chemo class.”
Every two weeks a fresh IV pump is attached to the power port and I'm sent off. That pump drips chemo drugs into my system for 48 hours in the privacy and comfort of my own home.
One month in, I have even been taught how to remove the pump at the end of that 48 hours. It is weird to be disconnecting gadgets from your chest but it does save a trip over to the Cross. Every two months or so another CT scan will be taken to check the cancer's advance or retreat.
Now, on top of the COVID-19 virus, I have to be wary of any germs because chemotherapy compromises your immune system. I stopped using public transportation a while ago and a fleet of terrific friends and family have stepped up to chauffeur me around when I need it.
We have all heard or read cancer statistics. The disease accounts for nearly 30 per cent of all deaths in Canada. Nearly one in two people born from 1960 onward will face some form of cancer. It's estimated that more than 83,000 Canadians will die of cancer this year.
Still, you never feel the real presence of the disease until you witness it in person. Suddenly, everyone having to wear masks to avoid COVID-19 feels like a very trivial issue.
I will never forget the day I went to get my first round of chemo, to get the pump attached. After being shown into a long room I'll call the Hall Of Blue Recliners it took around three hours, waiting for the drugs to flow, preparing the way for the toxic chemo cocktail. Sitting there reading in chair No. 12, I was feeling exhausted already, given my lack of sleep the night beforehand, glancing occasionally at fellow patients who often looked in worse shape than I was, trying to be cheerful and thankful with the expert nurses.
A nurse named Vanessa talked me through all the side effects and complications that could arise. At the end she gave me a plastic bag with an amateur takehome hazmat kit. Hopefully you never need it. It's for a worst-case cleanup scenario, just in case the chemo pump leaks any of its toxic contents. More disconcerting than the kit, however, is the fact that you're putting this toxic chemistry into your body.
Each nurse will guide at least five patients through the whole routine during their shift.
“So many people getting chemo,” I'm thinking. And then I stand up to put on my coat on and turn around, and look over a wall divider to realize that the room I'm in is one of three long halls of blue recliners, full of chemo patients with at least another 20 people between them. Add dozens of other patients in beds upstairs in various stages of care. And all of the dedicated people who work there. It's a big place.
Meanwhile, I'm learning more about diet than I ever have before.
As an offshoot of my treatment I was invited to join a special experimental diet study called PRIME taking place at the University Of Alberta. The idea is to target nutrition and high protein to maintain muscle and bone mass in chemotherapy patients.
Most of it revolves around monitoring your diet in detail, and you get measured a lot.
There is one cool part to the whole event, a 24-hour stay in Canada's only million-dollar WBCU. That's the Whole Body Calorimetry Unit at the U of A's Li Ka Shing Centre. One day in October I was sealed in a 10-foot square room with grey metal walls, a bed, a recliner, a television, bathroom facilities and a metal airlock to aid the passing of food.
For a whole day, the unit's sophisticated systems measure the exact rate of your oxygen and carbon dioxide exchange. I have yet to learn how all this pans out but living in a box for a day fit with the sort of oddball experiences I've sought out in my life.
I have always tried to consider nutrition. It's the exercise angle that failed me. During a monkish period in my mid-20s I used to run five kilometres every other day and tingle with energy when I did the tai-chi form. Then I spent 30 years in front of a computer and forgot to go for walks.
Thanksgiving weekend my sister and her husband and my nieces organized a COVID-CAREful get-together in their back yard.
This warm sunny afternoon packed great food, laughs, and lots of youthful company, with strict adherence to hand sanitizer, masks and distancing. Some 35 years in the media has left me a pretty cynical guy but encountering the next generation — so smart and capable and full of enthusiasm — left me feeling rich in spirit.
I may be an agnostic but I'm blessed to have such a wonderful support system. People tell me they're praying for me. One woman even hosted a shamanic ritual in my name under the hunter's moon on Halloween night!
More than a month into chemotherapy I'm pleased to report that I face relatively minor side effects, hiccups and sneezing fits, some nosebleeds, and about once a week I feel really fatigued. I'm making a point to get out for a walk when it's warm.
People tell me, “I can't believe you're so calm.” But what should I be doing? Facing down cancer is just another illusion in the end, until the end.
I have thought a lot about matters of life and death lately.
Like a true Gemini, I'm of two minds. Looking at the state of things, I won't be sad to say goodbye to what often seems like a planet spinning out of control. And yet, there's all that beauty, all those epic stories in film and print, all that stirring imagery, music and dance.
For years now I have felt that whenever the end came, my life already was complete. So many people have thanked me for turning them on to great art; I hope I've fulfilled some purpose. Through my work I've had the privilege to meet and speak with a few of the giants who walked this earth, to gain what insights I could.
I may have a serious look on my face but I'm smiling inside.
Beauty still stops me in my tracks at some point every day.
I am a lucky man.
I may have a serious look on my face but I'm smiling inside. Beauty still stops me in my tracks at some point every day. I am a lucky man.