My wife has lived for nine years—about twice as many as expected—since her breast cancer returned in the bones, requiring emergency surgery to remove a lesion pressing on the spinal cord. Three years ago it spread to the brain.

Nowadays, final-stage metastatic cancer can be a thing the victim lives with for a while, not a thing she’s clearly dying of. When Hope first got sick, a few people said, lightly, “Oh, cancer’s now a chronic disease,” almost as if they were saying, “Oh, you’ll always have a twinge in your knee.” The challenge of chronic terminal illness is that the patient can go on declining slowly for a long time.

I started calling life with a terminal cancer patient “the Sword of Damocles Life.” Something happens and you think it’s the end, but it’s not. There will come a time when it is. But until then, it isn’t.

This metaphor made sense of our life and brought comfort, though more to me than to my wife. We lived under a constant threat, but not under constant assault. At some point, suddenly, everything would be settled. Until then, life could go on almost as usual. The simplicity and directness of before and after helped me cope. And it helped other people understand the life we had to live.

The Sword of Damocles Life is like a low-grade migraine that you learn to live with well enough that it becomes a background part of life. You do what you have to do, adjusting as much as you can to the ways that life is fundamentally irregular and abnormal so that it feels ordinary. And without drama. Drama doesn’t help. The victim gets on with death by getting on with life. The caregiver does as well. Drama takes energy you both need for other purposes.

All the medical appointments and all the accommodations you have to make become routine. It’s just the way things are now. The weekly visit to the cancer center comes to feel like an annual physical. This new life feels almost natural—except for the knowledge, never completely repressed, that the sword will someday fall.

I don’t know how one could survive emotionally otherwise. As a caregiver, you become a professional at something in which you never wanted to have any skills at all, with something of the medical professional’s carefully maintained distance. The one you’re caring for becomes a professional patient doing something she has to do, like an athlete rehabbing from a blown ACL.

Many people don’t understand the life you’re living. They don’t understand the metaphor. Some speak as if you’re sitting by a deathbed and others as if you’re living a life like everyone else’s. Many of them begin by speaking the first way and at some point over the years begin speaking the second. They know the poles but not the space between them. 

You will get judged for living as normal a life as you can. Some people—not many but more than enough—expect near-constant drama from the dying and from the people who care for them, because, as people not dying, they can’t understand any other way of facing imminent death. They think you must be repressing your fears or that you don’t care enough.

A few will try to “minister” to you. I can’t help but feel that some have taken our suffering as a chance to play favored roles: the person who feels and cares deeply, the person who brings comfort and cheer, the person who speaks the hard words of realism. Some performed their chosen part so energetically they made me feel like a mouse in an open field as the hawk swoops down.

At the same time, you find out how many friends you have, some of them people you barely knew before, often people who know me from my writing but have never met my wife. We get notes from people who have been praying for her every day for the last nine years. Friends have Masses said, ask their friends for prayers, interrupt their errands to stop at a church and pray for Hope before the Sacrament. 

As you go on, and especially as the time in treatment grows, the normalish life you’re trying to live is punctuated by changes that make you fear the sword is falling. Cancer’s a mysterious disease. With late-stage cancer, you go through a string of troubles that are one-more-damn-thing-wrong but not unfixable-and-final-wrong.

There are few consolations. I’d thought my wife would take what opportunities she had to do the things she always wanted to do, and that we’d have reasons for indulgences we hadn’t before. That’s the picture a lot of the cancer propaganda gives. But when you’re severely ill, your world shrinks radically—at least my wife’s did. And the caregiver’s life necessarily shrinks, too. This is one painful effect of her illness I didn’t expect. 

The Christian has the comfort of knowing that the story continues, that everything lost will be restored, and that the losses can work to our own good. But the losses are still great losses. It’s still a life you have to live, which is not the life you want to live. Your wife will die and when she dies, you will be alone.

For the last several years, Hope has been declining, but slowly, getting a little wobblier and a little foggier and sleeping more of the day. When the cancer spread to the brain, that news felt like the sword dropping, but it wasn’t. Every three months she’d have an MRI and then gamma-knife treatment for the lesions it had found. She had surgery to remove a fast-growing lesion on the edge of the brain. The surgeon said he thought he’d gotten it all. She didn’t feel any worse than she had.

As I began writing this, a brain MRI showed that several lesions had continued growing despite being irradiated, some twice—the most the doctors would allow because of the possible damage to what life the patient still has. A new lesion appeared where the one had been removed. The treatment no longer worked and it was the last one she could get. The sword fell. 

But again, it hadn’t exactly. Yes, the rest of our life together was settled, with a rough timeline, but the metaphor has its limits. I had trusted language to do more than it could. I realized then that the sword would fall three more times: when Hope decided to stop treatment and enter hospice care, as she did; when she entered “active dying,” which she hasn’t yet; and when she died.

And as we’ve gone on, I’ve realized it would keep falling between the first and third of those steps, with changes that marked an irreversible move closer to death: so far, when she began to walk unsteadily and had to start walking with a cane, and when the hospice nurse forbade her to use stairs; soon, when she has to start walking with a walker; and later, in two or three or at most four months, when she’s confined to bed.

My way of thinking about our life hid from me what would happen once the sword finally fell. Our life together wouldn’t be as neatly divided—before and after—as I’d thought. In one sense at least, the sword has now fallen, the end is in sight, and yet our life continues to be a Sword of Damocles Life.

Lately, a different metaphor has urged itself on me. Our life is the Descending Wide Steps Life. Clumsy, but I can’t think of a better way of putting it. You must walk a ways, and then you fall—are pushed over—down to the next step, which will be painful, then walk a ways again, though you can’t walk as well as you did before, and drop down to the next step, and keep doing that. Until you get to the bottom. 

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