On the strangeness of hope

I.

I don’t believe in God, but when people say they will pray for me, I appreciate it unequivocally. When someone prays, they know that it is a request entirely up to God to grant or not. When someone says that they hope I get better, I wonder if they know that the 5-year survival rate for Stage IV pancreatic cancer is 1%. I wonder how facts affect their hopes. I wonder what they mean by “hope”, if they’re just telling me what they want. When people say they hope I get better, I’m not sure what they mean, but still, I appreciate it.

When people want me to hope, I am confused as to what they want me to do. Do they not know that I also want to live? Do they want me to ignore the statistics? What exactly do they think I can do that I’m not already doing?

II.

Suppose we say that Sam hopes the Raptors will win their next game. It seems as if (1) this hope involves a relationship between two things: the person and the future, and (2) that this relationship goes in both directions: the future can affect Sam (depending on the game’s outcome, Sam may be elated or dejected) and Sam can affect the future (somehow her act of hoping can help the Raptors win). Yet somehow, this relationship is entirely up to Sam: she can hope or she can not.

But hoping that your sports team is going to win isn’t really going to help your team win. Remember that the other team also has fans, and they’re hoping that your team will lose. So unless Sam’s hoping is more special than theirs, her hope is, in all likelihood, completely ineffectual. Still, Sam could hardly call herself a fan if she did not have such hopes for her team. In fact, the bigger the fan, the more one hopes.

During the Vietnam war, the vice admiral, James Stockdale was captured and kept prisoner for seven years. When asked about his experience, Stockdale said that he “never doubted” that he would get out and that he would “prevail in the end”. He said that this “faith” is something you could never afford to lose. So, for Stockdale, hope seems to be a vital thing — something that kept him alive and allowed him to survive in the most difficult of situations. It afforded him patience and perseverance.

Other cancer patients often talk about hope too, and how we have to keep on hoping and fighting. People often counsel me to keep faith, as if not hoping meant both despair and a quicker death.1 I’ve written before about how we, the sick, can feel a lot of unfair pressure to keep on hoping, as if hoping can help us survive and beat back our cancer. This view is widespread but false.2

Hope can also be dangerous. When Stockdale was asked about who didn’t make it out of Vietnam, he replied,

Oh, that’s easy, the optimists. Oh, they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.

Hope, it thus seems, is a delicate thing. One must hope, but not too much. Some hope may be needed to act, but not so much that it turns into wishful thinking.

But even if you figured out the right balance, how do you hope? If I tried to hope, what would I do?

III

The philosopher, Luc Bovens, proposes3 that the act of hope involves a kind of mental imaging of the thing desired. You picture in your head how your favourite sports team will win at the last minute, or how it will be nice and sunny at the park tomorrow. And it seems as if the more you imagine, the more you’re hoping.

You can’t, however, just imagine anything and call it hope. You might imagine you and your fellow citizens besieged by foreign invaders or persecuted by an oppressive government to try to understand what others have gone through without ever hoping to be in a similar situation. You can imagine conquering Asia alongside Genghis Khan, or imagine yourself a Jedi knight fighting against the Empire. But unless you have a weak grasp on reality, these imaginings do not count as hopes. Hope, then, seems to involve imagining not just something you want, but something that is at least within the realm of possibility.

But interestingly, hope also involves acknowledging that what you desire is not entirely within your control. While you might hope to fall asleep after you lie down, you wouldn’t at the same time hope to lie down. If something were entirely in your control, you wouldn’t hope for it: you would just do what it takes to get it.

When some people hope, they think that their hoping can affect the outcome. They think that their positive thinking is limitless in its power. But in so thinking, they’re denying what is essential to hope: the recognition that what you want is not entirely within your power.

IV

So what good does hoping accomplish? One might think that it does no good at all. Suppose that you hope it’ll be nice and sunny during your camping trip. You form pictures in your head about how nice it will be, while acknowledging that you cannot control the weather. Either your hope will be realized or it will not. If the weather is bad, you may be disappointed – more disappointed than if you had not hoped at all. But if it turns out sunny and nice, it will not likely be good as you had imagined — what can compete with our imagination? And even if things turn out so fortuitous that it was as exactly as good as you imagined, you’ve robbed yourself from the pleasure of being pleasantly surprised. So hoping does no good, and it often make things worse.

But maybe what’s good about hope has nothing to do with whether it makes things better. Maybe what’s good about hope is what it means about who you are, what you care about, and what you’re willing to go through. When you hope for something, you allow yourself to be disappointed by the future. When you hope that someone else will get better — and I mean, really hope, with all the imagining and the wanting and the acknowledgement that it is outside your control — you are allowing yourself to be saddened, to be broken, by someone else’s suffering or untimely death.

So while I’m not sure what idea of hope people have when they hope for me, it feels like an honour. It’s as if they are telling me that they are willing to be saddened and disappointed by my death and my illness — that they will not close themselves off from whatever pain may come.

But I remain confused about what it means for me to hope for my own survival. If hoping means opening yourself up to disappointment, how can I hope? How can I be disappointed by my own death, when I’m not around when it happens? Still, strangely, I hope.

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An update on the disease

My latest scan shows that the once, tiny tumours in my lungs have grown in size and that new tumours appear in lymph nodes in my chest. There’s also a large tumour in my stomach.

Before this, I had known only about a few small tumours in my lungs, in addition to the ones we knew about from the beginning — the ones in my pancreas, liver, and nearby lymph nodes. The disease had largely been confined to a certain section of my body, a part I would point to and call the “belly”. The metaphor of cancer as a kind of invasion had not yet felt accurate. But things have changed, and the word seems apt. I am being invaded. I am losing control of my body to something else, to something uninvited, and at some point there will be no more me.

Each treatment I have been on has been less effective than the one before it. I was first on FOLFIRINOX, a chemotherapy that left me fatigued for days or weeks, making me nauseous, thinning my hair, and causing neuropathy. But it was effective for eight months. Then I was on Afatinib, an experimental drug with very tolerable side effects. But it only worked worked for four months. The third and most recent drug I’ve tried, T-DM1 (or Kadcyla), left me with debilitating headaches for days. And it may or may not have triggered two incidents of vomiting blood. But T-DM1 only worked for a few weeks. And so I will start Gemcitabine soon, an old drug, one that was once standard for pancreatic cancer.

When I was diagnosed sixteen months ago, my oncologist told me that the average life expectancy was ten months. In those sixteen months, over 60 million people in the world have died. Many of them have died to due to old age. Many to disease, many to war, many to poverty. When we think of it in in the abstract, as a thing that happens on the order of millions or more, it’s hard to fathom. It is hard to understand that each of these people were living, breathing human beings, with their own stories and goals and dreams. You can try to imagine sixty million pairs of hands reaching out, working, making the stuff of life. But we can’t really imagine what “sixty million” looks like. We can’t even imagine a million. In fact, when we form a picture of sixty million people, it doesn’t look that different from our picture of just one million. But the first is sixty times greater than the second. And that’s a conservative estimate of how many people died in the last sixteen months.

I have often said that it was just a matter of chance, of bad luck, that I got sick. There was nothing I did that lead me to this situation — nothing I did to deserve this cancer. This is not because I am such a good person or because I know all about who deserves what. Rather, I did not deserve this simply because nobody deserves this. And it has nothing to do with “deserve” anyway.

But likewise, the fact that I have lived as long as I have with this disease, 60% longer than average, was also a matter of luck. It was just chance, and an unlikely chance, that my cancer cells manifests a particular mutation for which particular drugs exist. I’ve done nothing to deserve this fortune either. I did not pray, I did not consume strange concoctions of alternative medicine. And I am most certainly not a man of indomitable strength or will. All I did was listen to the advice of my doctors and follow their instructions as best I could.

I wonder how long I have left, but this is hardly the first time I’ve wondered about that. I have tried, over and over again, to come to grips with the fact that I’m going to die. But it has gotten easier each time. When I try to come to terms with something, I often look into its crevices, and I try to examine all that it is and all that it entails. Every time I do this, the emotions it brings up become weaker. And I begin to feel a little bored with it – not so much that I reject it or ignore it. Rather, it becomes a boring fact like the weather, something to live with and to complain about only a little.

So I don’t know how much time I have left, how many more drugs I can try or how well they will work. These drugs were never meant to stop the disease or to kill it. It was only ever meant to slow it down.

It isn’t easy to come to terms with an invasion.