A tale of two lives

It was the season of knowing and not knowing. The doctors said the word terminal, repeatedly, and then time began to move in three directions at once—forward toward progression, forward in all the ordinary days and also backward through memories of what life used to be. Each scan carries the question of how much had grown, what had spread, what had been lost since the last scan or intervention. My body changes every time, quietly and sometimes more dramatically. Ordinary days continue —coffee in the morning, sunlight through the window, carpool to drive, or not as we head into Spring Break—but they unfold beneath the steady knowledge that the disease is advancing, marching towards the inevitable. In short, a life measured in months, in scan results, and in the fragile hope that the next treatment might buy just a little more time. And maybe this researcher or that one has the idea; the idea that might buy us more than just a few more months.

The layers of normalcy return each day, carefully laid down like gauze over a wound. Forced normalcy, really—because no one can live forever in the white heat of life and death or sustain that amount of focus and energy on this problem to be solved. Still, the layers (and the meds) do their quiet work. They soften the sharp edges of reality, and in doing so they leave you feeling slightly (or more than slightly) untethered, slightly (or more than slightly) crazy, as if you are standing half a step outside the world everyone else seems to occupy so easily. And small talk falls away. Reaching for anything that doesn’t circle back to blood work or scans feels strangely complicated, like searching for a language I no longer quite remember how to speak and was never quite fluent in.

I talk with teachers. I plan for the boys’ futures. We speak, gently and practically, about retirement for my precious husband, about years that stretch forward in the ordinary way time is supposed to stretch without me in it. The conversations are necessary, responsible. I say the right things, make the right plans. Yet all the while it feels theatrical, as though I am playing a role in someone else’s life, a life I desperately want(ed) and yet know I cannot have. I try to rise and inhabit the moment, to be present for the laughter, to plan the memories—the photographs, the small bright reminders that I was here. And each time I do, I feel my heart break apart again, falling softly around me like confetti marking the path I must trod, alone.

Because somewhere deeper—somewhere wordless and certain—I know the truth that lives in my bones. Bones already riddled with cancer, even more than before if my most recent scan is to be believed. I will not see the things we are planning toward. Instead of being in the pictures at some point in the near future, a chair will be empty.

And so time becomes strange to me. It moves forward, faithful and unquestioning, carrying everyone else with it, celebrating birthdays and holidays, the boys growing steadily, our eldest now taller than me and this week, an official teenager. Planning for the next sports season, the next sports physical, registration for next year’s classes occupies time and energy — both of the boys will be in middle school, simplifying drop offs and pick ups. But for me it feels both present and already gone, something I can touch and yet cannot follow. I don’t know at which point I’ll no longer be able to participate, at what point I won’t be present in this half life, peering through the veil, here and not here fully. Here as long as possible, as long as I can.

When I carry the weight of scan results that means I’ll be stealing from the dwindling options available to me for yet another line of treatment soon but want to make a holiday, a Spring Break, fun for the boys, it feels as though I watch from afar. I remind myself over and over to be present, to show them who I am, to help them remember what it is like to have a mom, but this task can feel Herculean. I end up not accomplishing either very well, one foot on either side of a very important line. And I’m not fooling very many, those who are closest to me are also playing this charade.

If you are living this strange half-life—one foot in the world and one already stepping away—knowing you won’t be here long enough, watching the choices dwindle until you must choose again and again from the few that remain, then know this: I walk this path too.

And it takes every scrap of strength I possess not to throw my head back and howl at the moon, howl at the sun peaking from behind an errant cloud, not to tear out my own hair in grief and fury—particularly knowing how painfully slow it is to grow it back once it’s gone.

We who have already walked through the fire of suffering and facing our own mortality, we know this path. We’ve trodden it faithfully and we know the cost. We reach back through the flames, a hand forward for those who use our footsteps as a guide at times. It’s not always the same, we who walk this path of suffering, of living scan to scan, of watching the dwindling options with a mixture of hope and horror, but the features are sufficiently similar to create a road map of sorts to those who come after. We who are here and not here in this tale of two lives.