The Art of Dying Slowly

All that lives must die, passing through nature to eternity.

So far, dying slowly is an awful lot like living, but with more needles.

Four years ago I was diagnosed with stage 4 metastatic kidney cancer at the age of 47. This came as a complete surprise. Surgical heroics followed a couple of months later, removing both of my very large tumors along with a kidney and both adrenal glands. A few months of immune therapy came next, the only period in the whole ordeal in which I’ve felt ill. 

Things looked promising until a scan in December 2019 found a small mass in my lung, about the size of a pencil eraser. Doctors zapped it with stereotactic radiation. A few more tiny masses were found in June of 2020, so we began a new regimen of drugs to contain the growth, which was successful for a while. Side effects so far have been too minimal to warrant mention.

One tumor in my lung showed signs of growth in March 2021, so we zapped it too. Then last fall a scan showed that several of the tumors were growing. We raised the dose of my medication in the hope of getting a few more months of efficacy from this cocktail before having to move on to something else. 

Two more possible treatments wait in the wings. Either might keep the brakes on this thing for a while, but neither would destroy it. For that I need something new, something that isn’t available yet. And for a chance at that something, I need time. Fortunately, I may get quite a bit of time. All of the cancer in my body right now would fit inside an egg. Barring a car accident or a very unlucky expansion to a critical organ, I could have years even without a better treatment. 

Time is good. Time is all any of us can ask for. I may not have met you, but I know two things about you. You were born and you’re gonna die, just like me. Dying slowly is a lot like living.

My experience has been odd. I’m almost entirely healthy. Almost. Across four years I’ve seen pictures of just about every organ in my body. They’re fabulous. You’d be jealous. My cardiac health is superb. Never smoked. Excellent diet. Exercised, read books, ate, prayed, loved, did all the things people do to deserve to be healthy. Turns out, that’s not how this works. Death isn’t fooled by a kale salad. Being born is all it takes to deserve to die. 

Thanks to all that healthiness and the fact that brutal, traditional chemotherapies aren’t effective for my disease, I feel fine. Every day I get up and go to work at a job I love. Evenings bring bike rides by the lake. Hours often go by without thoughts of death gripping me, but nights are hard. It’s tough to get a full night’s sleep. 

Since the scan back in October, my dreams have been strange. They’re filled with unsettling images of crossing a great water. I see surreal, unfamiliar landscapes. People I’d forgotten, living and dead, play outsized roles in bizarre plots. My conscious mind may slip the reaper’s cold grip from time to time, but deep in my mind the pressure doesn’t fade.

What does it feel like to die slowly? Ever see a picture of a rock-climber bedding down for the night in a sling a thousand feet up a sheer cliff? That feeling of vertigo, of falling while not falling, that’s what it feels like. That sensation can well up unexpectedly, a disorienting sense of emergency amid an otherwise lovely afternoon. 

It can be hard sometimes to function. There is no existing treatment that can keep this stuff from eventually killing me. What we have can only stall it. Right now, we’re playing for time. People aren’t wired to relax while death looms. The body rebels against rest. 

Dying itself doesn’t really scare me, apart from all the mess and pain. Moments of clarity dawn over me in which I can perceive my smallness. More than 100 billion people have died. Though it feels like a lonely sentence, dying is as ordinary as breathing. Some of the coolest people I’ve ever heard of are dead, like Tony Bourdain and my Mom. It’s ok to die. It’s not the dying that vexes me, it’s the loss. What keeps me spooked is what this means for the people who love me.

I love my family. For them, I’m not a speck of sand on the eternal seashore. They need me and I need them. My wife and I were looking forward to sharing those moveable nursing home beds next to each other someday, arguing over the TV remote. We wanted to go back to Paris. We wanted to travel, to soak up each other’s company until twilight darkened our shared horizon. We wanted to be old together as we were young together, happily, soaked in laughter. The thought of being without her is a horror. The thought of her being without me is something worse, a nightmare without a name. 

I wanted to guide my boys, already men really, through the middle chapters of their lives. I want them to grow strong and happy, warmed by the love of a stable family. I wanted to be the crusty old geezer who lingers in my grandkids’ imagination, the doddering character who talks about rotary phones, manual transmission and other wonders of the unfathomable past. I wanted to be an uncle, a brother, a son, to people who love me.

Believe it or not, I have friends who love me. Some of them will miss me. My passing, if it unfolds as expected, will mark for many of them that great turning toward later life, as more and more of the people you long to share a beer with are permanently beyond a cell signal. I have tried to be a source of comfort and support for the people around me. Becoming an icon of pain, of loss, repels me. It’s not who I want to be.

My professional ambitions are just beginning to unfold. At work I’m doing things that make me proud, things that are becoming lucrative. I don’t want to be sick. I don’t want to be absent. I don’t want to be that empty chair they keep in the office to remember, until a few years pass and too few people know what it means. Until it gets carried away by the maintenance crew in a renovation.

Losing my investments in a political party limited the scope of my public life, but I wanted to continue to influence events on whatever scale I could. I wanted to discharge my civic responsibilities with local participation and with my scribblings in this silly blog. I wanted to retire and write much more. It’s work that felt meaningful and incomplete, now destined to remain incomplete.

What looms ahead is rupture. Alienation. Grief and loneliness. Because of me, because I could not be there to comfort them, the people I love will suffer. Because I could not do the work I enjoy or be the person that gave me pride, those around me will have less. It is very hard not to see this as a betrayal of my duties. This is not who I wanted to be in their lives, or the lives of their kids and grandkids. 

Dying slowly is a strange art I might have time to master. As this danger sits on my chest like a boulder I’m growing new muscles. I probably won’t be with my wife in her old age, but I have time to share with her the warmth of a powerful love that will leave her strong. My kids probably won’t hand me their swaddled infants, but I have time to share with them a love they’ll pass on. I have time to work, to play, to be with friends. I have some time to live. 

For me, it appears that the great athletic challenge of dying slowly is pride. Yes, it would be good to be all these things I hoped to be, to accomplish all the things I hoped to achieve, but some choices aren’t available to us. My wife and kids, my family, friends and coworkers, they will go on. My wife is strong. She would have been strong even if she hadn’t met me. She’ll be a force to be reckoned with, happy, fun and fulfilled again one day when her memory of me has lost its sting. My sisters, nieces and nephews will go on, remembering me on holidays while life unfolds without me.

People who have cared about me will build lives around whatever pain this event places in their way. Things I cared so much about, things I worried so much about, will be swallowed up, absorbed into the fabric of life, which will go on without me. Though I am very important to me, and to those who care about me, letting go of my pride in the things I wanted to be may be the most essential discipline of dying slowly.

My wife will find someone worthy to share her old age. My kids will pass on warm memories of me to friends, partners or kids. I will have my time, and that time will pass. And it will be good. It will be as good as I have the courage and humility to make it. 

Amid this powerful stew of emotions one sensation stands out. As I still hunt for ways to escape the noose of cancer, I can’t shake an overwhelming sense of gratitude. I am so incredibly fortunate to have so much to lose. I’ve been fortunate in the path and progress of this disease, to have so much time with so little pain and illness. 

A disease like this can ruin a family financially while it rips them apart emotionally. Losing a primary wage earner can not only rob a family of their income but rip away their access to health insurance. Struggling to find and pay for care in the midst of terror is a uniquely American experience, sadly common among cancer patients. It’s one we have not faced, at least not yet. Death may be a great equalizer. No one escapes it. Nature will greedily reclaim my carbon just as it will the wealthy folks in the hills or my friends who live in the park across the street. But our paths to that fate will not all be the same. Merely having the time, health and resources to muse over these matters is great fortune.  

Despite all the fear and the needles, dying slowly means every cup of coffee tastes amazing. Opening my pill counter before bed I see all the empty slots and measure the joy of having lived a few more days. Every interaction has an urgency that heightens the experience like some psychedelic mushroom. Dying slowly can mean living life in its fullness. 

We don’t get to choose whether to be sick. We don’t get to choose whether to die. We get moments in which to create meaning out of whatever life gives us. Those moments pass, but what we do with them gives us a chance to linger briefly beyond life, to bestow a few small blessings that might persist. 

So far, the art of dying slowly seems to be the art of living. Maybe I’ll have time to get good at it.

Life may yet have surprises for me. As I write this, I’m in near perfect health, all of my necessary organs largely undamaged. Should some cure for my cancer become available, as it has become available for some, my horizons could open. 

It calls to mind a line from Ted Lasso, “It’s the hope that kills you.” In a strange way, that fading possibility is the last twist of the knife. There’s a temptation to escape from the challenge of dying slowly into the small but still real possibility that this could pass, at least for a moment, that I could one day resume “normal” life without death’s hand chilling my shoulder.

Should such a Hail Mary touchdown change my health, I don’t think it will change my mind. After all, that cold hand sits on every shoulder. The only readers of this piece who aren’t dying slowly are the ones dying quickly. Whatever may come in my struggle with cancer I don’t think I’ll lose sight of that reality again. I’ll be dying slowly, right up to that sudden halt.