The Cancer Diaries Part 1

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I should have started this a while ago. Perhaps when I received the first news something as wrong. But it took a while to really sink in. And then it was upon me. Although this is personal, I wanted to share it, in the hope others might find it useful.

There’s a psychological process called the Kübler-Ross model, or the Five Stages of Grief, which is often applied to cancer and other diseases, but at least for me, it didn’t work that way. Her stages are denial, anger, bargaining, depression, and finally acceptance. But for me, the first thing was a sense of betrayal.

Yes, betrayal: how can my body let me down like this? I have treated it well for all these decades – okay, not I haven’t been worshipful, but reasonably respectful. I haven’t smoked or eaten mammals for almost 50 years, and I watch what I eat and drink (little junk or processed foods). I don’t drink alcohol to excess, don’t drink liquid sugar (aka soda pop), don’t do drugs. I walk a lot – several kilometers a day usually – and keep my mind active. I keep my teeth in good condition and get a checkup annually. Surely all that should have counted for something.

But the tests don’t lie. My PSA was elevated. Frighteningly so. My body, or at least on part of it, betrayed me.

Not that I really should have been surprised. My father and his father both had prostate cancer. I am third generation and the likelihood of me getting it has always been very high if not a certainty. In hindsight, I wish I could have spoken to my father about it, sought his wisdom, but by the time I learned of it, he was already dying of another cancer.

I had a warning about it several years back when I had non-cancerous prostate problems and minor corrective surgery. I didn’t go through denial after that, or any of the stages as I recall, just hoped it had cured the problem. After all, modern medicine cures so much else.

Apparently not everything.

After betrayal came resignation. But I’m getting ahead of myself.

This latest chapter of my life began back before the start of the COVID-19 pandemic, in the winter of this year. Which, I suppose, is somewhat fortuitous: I learned about the issue in time to make at least some necessary arrangements for further tests and consultations. But the pandemic made everything more complicated, more difficult, and added the very real threat of another contamination (if wearing a mask annoys you, consider that not doing so threatens to infect someone who faces another ailment, like cancer, and will make it far worse, even fatal… stop being selfish and wear it, dammit).

Also difficult was the discussion I had to have with Susan about the prospects, and how the upcoming tests might affect us in our daily routines. Having to have a discussion, however minimal and preliminary, about cancer is not an easy undertaking. Even the word cancer carries suggestions of menace and dark consequences.

The first of those tests was a biopsy, done in a hospital out of town. I had had one before, so I was at least somewhat prepared for it. I knew about the pain, I knew that it was short-lived, and could be managed, and I was prepared for the after-effects. But you really never get accustomed to the sense of invasion. After all, having someone push a long tube the diameter of a broom handle up your rectum with a needle in it to snip through your colon to grasp parts of your prostate can hardly be described otherwise. And spend 15-20 minutes doing it, too – in the company of one or two strangers.

Because of the pandemic, we do this alone. Visitors are not allowed into the hospital, so Susan has to wait in the car. The reassuring touch of your partner’s hand is missing. Patients sit in isolated chairs awaiting the call, many focused on their phones, some reading, others just staring at the walls or TV. Strangers, all of us, with no comforting words for one another. 

Dignity is one of those things you just have to let go.  It’s difficult to feel dignified with your underpants around your knees and your bare buttocks facing a stranger. There are opportunities for self-effacing humour. I tried to converse with the doctor and technician, to normalize the situation, crack some small jokes at my own expense.

I’m not squeamish, but it is uncomfortable and embarrassing to go through a prostate biopsy; that aspect was not discussed by anyone along the way. The sexual innuendo is never far from the surface.

As it works, the device makes a loud clicking sound like the old cap guns I played with as a child. Or a modern nail gun. And, of course, since it’s inside you, you can also feel it in your body, not simply hear it. I counted every one of the 12 clicks. All men do, I suppose. Ten more left. I try to breathe normally. Seven. Ouch. My breathing is shallow. The probe moves. Three. Oww. Calm, I tell myself, be calm. One… ah, over at last. I relax muscles I didn’t realize I had tightened. 

One of the women hands me a towel to wipe my backside of the excess gel, and they discretely leave the room to allow me to pull my underwear back up and recover at least a small amount of self-respect. They return to explain what happens next. After that, I leave to get dressed and return to Susan, waiting in the parking lot, to drive me home, while I shift uncomfortably in the passenger seat.

Men do get a little prepared for this, by having our prostate checked by a doctor’s finger every year. I was admittedly lax: I had a PSA blood test, but foolishly passed on the rectal poke far too often. Maybe because my older, male doctor retired and was replaced by a younger, female one, I was a bit embarrassed and shy to drop my pants and have my anus probed by a woman my daughter’s age. Looking back, that was naive and foolish of me. I might have had my problems diagnosed sooner. Learn from my mistakes, you who read this.

And then there’s the sense of privacy and decorum you have to shed. Culturally, we have veils around sex and sexual organs. My reserve is also built on having grown up in the suburban 50s and 60s where we didn’t show them off or discuss them, especially with strangers. We had propriety and metaphors. But when you deal with prostate issues, all the plumbing gets to join the party out in the open, so to speak. I had to get used to nurses and doctors examining the tackle to make sure everything was properly clean and connected. I’ll discuss the joys and challenges of a catheter a bit further on.

Cancer’s scary, and for good reason. There is no simple remedy, no cure, no vaccine. We resort to surgery, to blasting our bodies with radiation or stuffing them with toxic chemicals to try and exorcise the beast within us. Quacks and charlatans push fake cures on the vulnerable, preying on their fears. I’m too skeptical to fall for their traps.

And cancer isn’t an invader: it’s our own cells turning against us. Betrayal.

In his book, The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee, wrote that cancer cells are copies of who we are. This, he says, isn’t merely a metaphor. “We can rid ourselves of cancer,” he concludes, “only as much as we can rid ourselves of the processes in our physiology that depend on growth – ageing, regeneration, healing, reproduction.”

Hence my sense of betrayal. Cancer was myself attacking me. And doing it aggressively, with fatal consequences. How could I do that to myself? It was like a rebellion against the state. And history, as I love to read it, has shown us that even small revolts can eventually overcome the entire state. I had to laugh at myself, imagining my cancer as a cellular Fidel Castro rising up against the Batista of the rest of me.

Death is the other thing, the often unspoken shade that walks along: cancer brings with it the shadow of mortality. Death sits quietly in the prognosis. I like to believe I am somewhat Stoic or Buddhist in my approach to the inevitability of death – none of us is getting out of here alive. But even if death is less frightening, the fear of dying retains a hold.

Like sex, death is one of those “we don’t talk about it” subjects that is constrained. Death is often limited to conversations with rabbis, ministers, and doctors. When you have cancer, you have to confront mortality – your own and your partner’s – with not a lot of resources, opportunities, or even experience to discuss it. Friends and family will try to comfort you, deflect the discussion, offer hope that it won’t happen and that you’ll get better. Well, perhaps you’ll recover from the cancer, but death is still at the table. And once it’s been at the table, you never lose your awareness of the unwanted guest.

This can be strangely good, in that it imbues what were small acts and gestures with meaning. What if this were the last time we kissed? What if this is the last time we say goodnight? What if this is the last book I ever read? What if this is the last cup of tea I ever drink? You can’t help but wonder about these things. Not to be maudlin, but it can make the gesture, the kiss, the cup tea, the time spent together rather precious.

At my age, death is always a neighbour looking over the backyard fence. I am, depending on my mood, somewhere in the last third, quarter, fifth, or less of my life. Life has a beginning and an end and we cannot deny either, a reality that comes home when you cross milestones like your 50th birthday. But, unless you try to deny aging,  you always hope for a reasonably comfortable decline in the last fraction, extended through the gentle ministrations of living well and modern medicine. Cancer appears like an automobile accident to interrupt that voyage: sudden, violent, unexpected.

Susan and I don’t discuss death, although it’s there on the table between us. I prepared a revised will. She read it, acknowledged it. The reality is there, but we don’t talk about it. Superstitious, perhaps: talking about it makes it happen, makes it real, makes it uncomfortably loud in this quiet room we share. Death can make us lonely, even when it’s not in the same room.

And last fall, one of our very closest friends died of another cancer, a slow, painful process that deeply saddened us. We went out of town to see him a very short time before he finally died. We both had that image in mind, both shared that emotional fragility about cancer when I received my diagnosis.

So where was I? Oh, yes, the biopsy. Two weeks of waiting for results. I remember watching the TV show CSI some years back and marvelling at how their laboratories produced such immediate results. In real life, you have to wait. Waiting, like pain and discomfort, is just something you have to get accustomed to. The doctor’s office set up an appointment in person and the days passed in glacial speed as the date approached.

We’re both there for the results, like being in a lawyer’s office for the reading of the will. The doctor wants your partner to hear the reality. You can’t hide from it like in the movies. No “Let me be the one to tell her,” and then to let it slip by unremarked. She has to be prepared for the consequences. Ride the emotional rollercoaster together. You have cancer, it’s serious, it needs immediate attention and there is no guarantee that anything doctors do can cure it. Deal with it, both of you.

We’re all wearing masks in his cramped office. He describes the diagnosis. Ten of the twelve samples came back positive. That’s serious. He doesn’t say bad or terrible, or any of those judgemental, emotionally-laden words, but I know it is. He uses models and charts to show what’s going on. A mini-lecture in neutral terms.

Part of me is curious, wants to know the science behind it, to ask questions about biology and physiology. Part of me wants to shut the inner door and stop listening. And part of me wants to race past it to the “How do we fix this?” answers. Or even “Can we fix this?” Susan sits quietly wrapped in her own thoughts. I worry how it will affect her, should it prove fatal. We’ve been together more than half our lives, we share everything. What happens when that link gets broken?

What do we leave behind? When you ponder mortality you have to take stock of your life in a different way, one that asks frankly about how you affected others. What have you done that others will remember you for? What memories, what gifts, will they keep? Did you make a good or bad difference to those around you? But I don’t think of that now, as the doctor points to his little latex models.

The solutions, such as they are, are limited. Surgery, radiation, chemotherapy, and some combination of them all. And they have to be done soon. This isn’t something I can put off. The cancer has its own timetable and it’s moving rapidly. And like I said: no guarantees that anything will work. They do their best but my personal little rebellion may have its own agenda that a single process won’t disrupt. Fidel may yet take the capital.

By the time of this appointment, I’ve had perhaps four months between the blood test and this meeting. Everything has moved at a measured, sometimes frustrating pace. That changes. Time dilates. Events move quickly. The doctor’s staff set up a date for surgery. Months compress into weeks. Phone calls from nurses and doctors to prepare them and me.

I found myself staring, some days, just through the window, at nothing in particular. Not in silent contemplation, more in blankness. Something beyond mere comprehension is happening, but I don’t know how to grasp it, don’t know where to turn for answers. Or consolation. I walk my dog and find myself blocks away, lost in thought, no memory of the trip in between.

And then, suddenly it seems, the day is upon us. I’m carrying a bag with clothes and books into the car, driving to the hospital, 60 km away.

I’ve never had major surgery. I don’t know how doctors classify surgery, but to me anything that cuts open my flesh and removes parts of me is major. I have had to think about that. Or not think about it. I try to avoid falling into that self-absorption pit where one dwells on something. I don’t look up things on the internet, don’t pass my days thinking of what will happen to me. This is something that just is. But I am curious, too, still ignited by that need to know, to learn, to understand.

I try to still the restless monkey brain that wants to hop about. Reading Buddhist and Stoic texts all these years helps that. I can intellectualize and not emotionalize some issues. Harder when they’re so personal, but I try, like that marvellous TV creation Spock, to think about them logically, and not obsess. It helps. I find myself reading the calming Marcus Aurelius again. Que sera, sera, I tell myself. Memento mori.

And then the day is here. I am lying on a table as the hospital staff prepare themselves and me for the operation. Which I’ll describe, along with my recovery to date, in the next part.

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