What I want you to know

There’s this pressure among the sick, among those of us with cancer, to fight our illnesses as hard as we can. This pressure has a variety of sources: family members, friends, the culture at large (think cultural depictions of illness like well-known asshole Lance Armstrong), and even others afflicted with cancer. The pressure turns into a particular myth: one’s chances of survival depends on the character and personality of the one afflicted. If you are strong and if you fight and if you hope, you will survive, or at least live longer.

This myth, or a cousin of it, manifests itself among those who are not sick: “if you exercise, eat enough vegetables, meditate, think positively, pray regularly, don’t smoke, don’t drink too much, don’t eat too much red meat, etc, you won’t even get sick.” This is of course not true. Doing some of these things will reduce your chances of getting sick, but nothing reduces your chances to zero.

But for whatever reason, we have a hard time thinking in degrees. We would rather think in terms of either/or: if you did all the right things and avoided all the wrong things, then it is 100% certain you will not get cancer. So if you did get cancer, then you did not do all the right things or did not avoid all the wrong things.

(But rejecting this either/or leads some of us to make a different mistake: “if doing all the right things and avoiding all the wrong things does not prevent cancer, then there’s no point in even trying.” When you try to avoid thinking that everything is black or white, do not thereby think that everything is the same shade of gray. It’s still a good idea not to smoke.)

We know intellectually that there’s nothing that can prevent us from having cancer with a 100% degree certainty. But I suspect that you don’t really believe this. That is why I feel the pressure to tell you that I did not smoke, that I did not drink, I meditated regularly, exercised regularly, gave to charity occasionally, volunteered, etc. Not that I did all the right things. I probably ate too much meat. I probably should have given more to charity. I’m suspicious of positive thinking, and I never prayed. But those things I failed at are probably not what gave me cancer. It was a factor outside my control.

I want you to believe this, because I want you to believe that this disease is not my fault. I want you to have a good impression of who I am and who I was. But it is, I recognize, hard for you to believe that it’s not, at least in some small way, my fault. Because otherwise you would have to believe that there are factors outside your control that can affect your very existence.

In other words, if my being getting cancer was outside my control, it then means that whether you get cancer can also be outside your control – you too could be faced with a terminal illness. And vice versa, if you believe that this is something that only happens to others, then you don’t really believe that my getting cancer was a matter of chance.

I think in previous posts, I have said that I wanted everyone to believe that this can happen to them, just because it happened to me. I wanted you to believe that I am like you, because I wanted you to believe that I am sick through no fault of my own. But I didn’t realize what that means. It means that you have to be genuinely and deeply aware of the capriciousness of your own life. And that can be debilitating – anxiety-provoking. (Spouses, family members, and close friends of the terminally ill are known to suffer from death-related anxiety more acutely than friends of friends, acquaintances, and colleagues.) Facing not just the fact of your death but the fact that it might be out of your control can make living even harder than it already is.

And I don’t really want your life to be harder than it already is. So it’s okay to pretend that you’re exempt from all this. And it’s okay with me if you want to think it’s my fault I’m sick. Just keep it to yourself.

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On thinking about death

When I think about dying, which is all the time now, I sometimes wonder why I didn’t think about all this before. And wondering about why I didn’t think about all this before is only one tiny step away from wondering why everyone else isn’t thinking about it now.

Scott Alexander once pointed out that one of the scariest things about utilitarianism is how intuitive and sensible it seems until you actually look at the real world. If you confine your world to your friends, family and neighbours, you might be willing to incur small loses for the greater benefits of others. But when you think about what the world is really like, and not just what’s within your normal world, it becomes very demanding and scary.

He offers the following fable:

Imagine a happy town full of prosperous people. Every so often they make nice utilitarian decisions like having everyone chip in a few dollars to help someone who’s fallen sick, and they feel pretty good about themselves for this.

Then one day an explorer discovers a BOTTOMLESS PIT OF ENDLESS SUFFERING on the outskirts of town. There are hundreds of people trapped inside in a state of abject misery. The Pit Gods agree to release some of their prisoners, but only for appropriately sumptuous sacrifices.

Suddenly the decision isn’t just “someone in town makes a small sacrifice to help other people in town”. Suddenly it’s about the entire town choking off its luxury and prosperity in order to rescue people they don’t even know, from this pit they didn’t even know was there a week ago. That seems kind of unfair.

So they tell the explorer to cover the lid of the pit with a big tarp that blends in with the surrounding grass, so they don’t have to see it, and then go on with their lives.

But the thing about the world – the real world, the world we have now – is that there are actual things that are very much like bottomless pits of endless suffering. They comprise the developing world, the poor, the mentally disabled, the elderly in nursing homes, prisons, psychiatric wards, most hospitals, those dying in war-torn countries, and those ravaged by disease.

And while utilitarianism would be relatively easy if there were no bottomless pits of suffering, it’s damn hard in reality where these pits exist. And we can’t just cover these pits with tarps. First, these pits are not literal holes in the ground and they don’t make tarps big enough anyway. And moreover, we have a hard time being so deliberately callous. But what we do is not much better.

I don’t know what you do when you are asked to think about all the suffering in the world. But here’s what I do: I think about it for a bit, then say, “It’s a complicated problem, and there’s not much I can do about it.” But I never put actual effort in finding out how complicated the problem is or ever try to do much about it. I just repeat the “it’s complicated” mantra to myself every time the issue comes up.

My own dying is just one of millions. My own suffering is not worse than those of millions’ others. What I’m going through is relatively easy to contemplate, but even I flinch when I think about it. Much easier before when I didn’t have to think about dying at all. Now I’ve got no choice. I have to think about it. I can only imagine how hard it is for my friends and family to try to deliberately think about dying. That may come off as snarky, but it’s also sincere. (Can you be both snarky and sincere at the same time?)

People struggle with living their ordinary lives, and ordinary lives are not easy, with mortgages, taking care of children, looking for a job or an apartment, or worrying about whether you’re going to keep your job, worrying about your relationship with your spouse — those are real problems that are really difficult. And then you have to think about the fact that this Ken Chung, your friend, brother, son, cousin or nephew, is actually dying from cancer? DYING for chrissake! Of course, I’d rather be in your shoes than mine, unless you’re also in one of those bottomless pits or in one worse than mine. But it’s still hard, because most of your life, even though it’s normal, is still really hard, and we can only handle so many hard things at a time.

So here are some thoughts on how to relate to the dying, or at least to this dying person. If you can say something to me that is not cliché and sincere and kind, that’s amazing and incredible. Truly. But don’t ever feel guilty about saying something that is cliché to me. Even things like “You’re strong”, “You seem wise about all this”, “We have to enjoy the days we have” all mean a tremendous amount to me, even if I disagree and think I’m weak, unwise, and I have no idea how to enjoy what life I have left. You should know that you cannot pull me out of the pit I am in — my disease is incurable.1 All I ask is that you not a put a tarp over me and forget about me.

But even if you did that, I can’t really fault you. After all, part of me wants desperately to reject utilitarianism just because it makes me think about things I’d rather not.


  1. Even if you wanted to try pull me out of this pit, you would have to go and study immunotherapy, gene therapy, and/or oncology, and somehow make multiple Nobel prize-worthy breakthroughs really fast. 

How much time do I have left?

When I was first diagnosed with pancreatic cancer, I was given a terrifying number: 10. On average, someone diagnosed with Stage 4 pancreatic cancer has ten months to live.

And what sounds scary is the fact that I was given this statistic a little over seven months ago, which makes it sound like I have only about three months left to live.

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But this logic isn’t right. I have survived the last seven months (actually, I’ve lived the last seven months intensely), and so the number I should be concerned with is not

  • “How many months, on average, does the diagnosed Stage 4 pancreatic cancer patient, who has just been diagnosed, have?”

But

  • “How many months, on average, does the Stage 4 pancreatic cancer patient, who is still alive after seven months, have?”

The answers to these two questions are different, because they take their averages from two different sets of people. To answer the first question, your set would include everyone who’s been diagnosed with Stage 4 pancreatic cancer. And that means including all the people who did not make it to seven months: those who died within one month after their diagnosis, two months after their diagnosis, and so on.

But to answer the second question, you would not include everyone. You would exclude all those people who died within seven months of their diagnosis. And so the average number of months this group of stage 4 pancreatic cancer should be higher. In other words, the answer to the question “how many months do I have left?” should be more than three months.

The difficult thing is that I have no idea what the answer to the second question is or how many more months I actually do have.

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But I’ve recently got on good terms with uncertainty, which is a good thing, since uncertainty — about life and death no less — has forced its way to become my constant companion.

Changes to my body

My body has undergone many physical changes over the last 6 months, since my cancer diagnosis and my chemo began. I used to have hair on my head.

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Now I do not.

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All this from the chemotherapy.

I’ve also had a plastic triangular disc placed under the skin on my chest which allows for easier intravenous access for chemo drugs. I’ve also lot some weight. And those are just the changes one can see.

My treatment has also given me peripheral neuropathy, which means my fingers and toes tingle all the time.

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And the fatigue is persistent, and even as it wanes the further from my last treatment, it pops up unpredictably, causing me to end social engagements early, to leave my friends before I finish my coffee or tea, to leave parties well before the end, just so I can go home and sleep.

In all of this I have been fortunate—my body is continuing to respond well to treatment (relatively speaking). The cancer itself is having less effect on my body than it once did, despite still remaining my probable and eventual killer.

It’s difficult to deal with change, even if you recognize its inevitability and its pervasiveness. If you change one thing, and deal with that, that’s still hard but okay, especially if you are the change’s agent rather than its plaything.

A large, unshakeable, change will come to me swiftly at some point. The chemo will stop working, and the cancer will overtake my body and me. It will be fast—a matter of months. But it will also be slow—months are long. The cancer will bring fatigue down on me like rain. I will not burn out or end with a bang. Instead, I will whimper and fade away. My death will be pathetic.

Repetitiveness

My illness is repetitive. Or more accurately, my treatment is repetitive. And dull. This is the part of the movie where they show the scene once, and then we watch the pages of a wall calendar flip and fly away, or watch a time-lapse segment of seasons changing, or a montage of small moments, until we come back to the same scene but with a significant and meaningful change.

But there’s none of that. Not yet at least, and I don’t know, maybe not ever. And even the change I’m supposedly hoping for (and sometimes I am hoping for)—for this illness to go from terminal to chronic—is not the kind that play well in movies. “Yay! It’s now chronic, instead of terminal”. Chronic illness is probably repetitive and dull too.

It’s not just the days that are repetitive. I often think the same things over and over again: how tired I am, how tired I am of being tired, and of course, “didn’t I think all this last week?” and “the week before that too?”

I want to acknowledge though that I am getting better. My tumours have shrunk substantially, and so I guess my illness is on its way from being terminal to being chronic. But what do we call this distance, this space, between the two?1

Maybe there is no space between these two places at all. Maybe terminal and chronic are two neighbouring countries with a only width-less border between them. (And to complete the metaphor: full recovery is across an ocean, and it’s decades before we have the technology and know-how to get there.)

I guess I’m getting closer to the other country without yet having left this one.


  1. There seems to be no word for it, and so it’s hard to feel grateful for something I cannot even name. Plus, even though I am getting better, I don’t feel better. It’s the chemotherapy, not the cancer, that exhausts me. But I am lucky. Not everyone gets to be here and move in the direction of better. 

Is this a fight?

We often talk about fighting diseases. We say, “I’m fighting a cold.” And people talk about “fighting cancer”. They might say, “she won the battle against cancer”, or “he fought bravely, but ultimately lost his fight against cancer.”

Having cancer sometimes feels like I’m in a fight. I try to maintain an even temper, find solace and peace, and not cry out too often. I try to do what I can to be a good patient, take the prescribed medicine, ask the right questions, find out what more can be done, all without being a nuisance. I try to make the right moves in this fight.

But it is not really a fight at all. A “fight” suggests some kind of fairness to being in the ring. Like, I somehow qualified to be there squaring off with Mike Tyson or Manny Pacquiao.

Can a single human being be in a fight with a tornado, a flood, an earthquake? Can you be in a fight against a force of nature? A cold, maybe. We can fight a cold, because everyone gets a cold from time to time, and it goes away.

But this cancer, this stage 4 pancreatic cancer, is not like that. It is a force of a nature, unremitting in its brutality. I am not qualified to be in this fight, nor do I think is anyone else. One cannot beat this thing; one can only live longer.

If there is a fight being fought, it’s the medical community who’s doing it, who’s working on new medicines and clinical trials to see what can be done. I believe these doctors and researchers will eventually, in the next few decades perhaps, find a cure and beat pancreatic cancer. But I will not be here when they do so.

It is funny how it stills feels like a fight sometimes. If I die from this disease, which is likely, it feels like I will have lost. But if I win, it would feel like it was luck alone that let me win. I guess if I were in a fight with Tyson or Pacquiao, it would be much the same.

Drugs I am taking

What drugs I have been taking: Folfirinox (my chemotherapy regimen: Oxaliplatin, Irinotecan, Fluorouracil, Folinic Acid), Emend, Ondansetron, Dexamethasone, Prochlorazine, Creon, Fragmin injections, Nupogen injections, and Citalopram.

What drugs I may start taking: Pot.

My brother likes to repeat joke that I like: You know what they call alternative medicine that’s been proven to work? Medicine.

I’ve heard many suggestions for various alternative medicines, passing along a few to my medical team (doctor, nurse practitioner, nurse, dietician, pharmacist) to see what they would say. Everything I mention, they are sceptical about its value, but at least they think a few are harmless. And so if it’s important to me to try those ones, they tell me to go for it. But it’s not important to me if it doesn’t work. I want to know what works. And I don’t want to spend my time and effort on things that do nothing.

But when I asked about marijuana for symptom management, wondering if it had any value at all or it was just another crazy theory, the doctor said, “yeah, let’s get you a prescription.” The nurse practitioner said, “yeah, we’ll get you a prescription to a dispensary. It can help with nausea, low appetite, and insomnia.” The nurse said, “Yeah, most patients here are on pot. And chemo patients have been using it for decades. Make sure to use vaporizers; they’re much better to use than smoking it the old fashioned way.” There was no question of its usefulness. The team was unanimously in favour of me trying it.

So there you have it. Pot was once an alternative medicine, but it ain’t alternative no more. It’s just medicine now.