“Metastatic” means “terminal.” There is no sugarcoating this. It means that someday, sooner or later, I will die from cancer.
At first there is the shock of this, wave after wave of grief, and then the settling.
Sand and water.
And the full panorama of what is left.
I stand and ask myself What am I seeing? What do I notice? And there is wreckage of course: scars, family worries, fear, a constant checking of accounts, depression, anger, grief. Job loss, a haze of ache-filled and tired days.
And I take those in. They are fallen brick and mortar. Splintered wood. Animal bones.
But soon some bird flies home, calls to kin. I am forced to look up, see a friend calling, a bit of sky.
Water. Sunlight that does not burn. And shade, respite in the form of kindness. There has been so much kindness.
Both coexist here. Both wreckage and love. It is an island of its own, this strange and sad and sometimes beautiful place called “terminal cancer.”
Wallace Stevens starts his famous poem with the same line as its title, “The house was quiet and the world was calm.” In this poem, the word “calm” repeats six times, lulling the reader into a sense of languid, expansive openness. “The world was calm.” A person could continue, could go on. This lived moment, in this poem, is given meaning through its rearticulation and recurrence.
An ideal. A memory.
“The house was quiet and the world was calm.” My own world is returning, slowly, back to the familiar figureheads of normalcy. I say “figureheads” because my life’s markers are symbolic, not entirely trustworthy, images of what used to be. My hair is a slow-growing helmet, no longer a velvet crust, for example. And yet I don’t entirely rely on its long-term presence.
My health is in stasis, no better, no worse. Chronic shoulder pain has become my companion. Every day is monitoring, listening into the body’s conch shell and hoping for echoes of normal.
The figurehead of my family is clearer, but I know the undertow of sorrow still holds sway. Look around, the world seems to say. Touch the shore again.
I try to. The world goes on “as if,” the sun also rises. And yet to re-enter the old life again and again in this new body, with its losses and fears, can feel like a lie. Each day feels not so much an entry as an attempt. Hello how are ya goes the sincere greeting to the mail carrier, the grocer. No ill will towards anyone. And yet I close my eyes and feel the fractured, unmoored elements of this body pulling me towards falling.
Equilibrium, even the appearance of it, takes much more work.
“The house was quiet and the world was calm.” Stasis. The dash between words, a valley. The musician John Cage has a famous work called 4’33”, and it is complete silence. Four minutes, thirty-three seconds of silence. Quiet. The audience sits and hears – no, the idea is to listen– to coughing, the rumble of the ventilation system, seat creaks, rustling, and the quiet. To just sit. The piece is a statement to be here now. To be present, a reminder that ordinary sounds, attended to, can become song.
Or simply: Stop. Break. Wait. Beauty is everywhere.
“The house was quiet and the world was calm.” For now, for now.
There’s no resolution here. No closure. I’m aware that my hunger for resolution is a hunger for a certainty that cannot come. We who live in Cancerland, stage IV or recurrent or just diagnosed, have stepped into a world of mirrors and aberrations, in which the life we saw before is distorted. Figureheads on ships that used to guide us can’t be believed. Music has more minor key, or no familiar notes at all.
And what can we do? We return to our seats, or to the doorway, again and again, and in either the silence or the new music we make some way.
What is your new way? What are the new experiences, sounds, sights that you are attending to as you recover?
Imagine a large, plastic worm that drools liquid constantly. It is shoved through your chest skin and into your armpit, and its stomach sac, attached with a lengthy tube, wanders and slips over your belly like a rogue balloon.
Imagine that this worm’s belly must be drained twice a day. In the lengthy, slow, meandering draw down from your flesh into its rotund collections, there are flesh bits that look like fingers, raw chicken, fetuses.
Sleep on your back. Do not raise your arm.
Hourly you must shove this worm’s unruly flailings back into your pants.
Imagine that the reddish-orange fluid that gathers in the pool of this squirming hellion’s plastic gut is not blood. It is liquid detritus to be removed from the flood site. At times the colors of it evoke a sunset, which is pleasant enough except for the pus.
Getting dressed: 1. Place your shirt overhead first. 2. Let the garment rest on your shoulders for a few seconds. The tube must settle. 3. Slowly, so as not to shift your inwardly slithering medical reptile “buddy,” raise your arm and slide it gently through the sleeve. 4. Wait 10 seconds. 5. Repeat with the other arm. 6. Breathe a sigh of relief: the drain stayed.
In considering architectural innovations, ponder the labyrinth. Who is the monster? Who is the girl?
Each flesh bit that leaves the body may be a part of the disease. One might celebrate. Might.
Imagine removing your clothes. The shower water rushes. The wildly gesticulating worm of tubular regurgitations must be subdued and restrained for the cleansing, and so, like a madhouse warden, you tape and tape and tape it not to a chair, but to your skin. Supervise its movement. There will be no violence today.
Absolution? Only with its removal. Call the doctor.
Oh parasite, oh lollygagging and lengthy leftover lap lap lapping and long-remaining lily of the surreal translucent and post-surgical liquid stem linking loss to luck, little to less, longing to love and back again, you’re a lazy lurid river, a milliliter lover, a sewage leaver, convenience killer, a bendable lamentable wily water lure, a makes-it-hard-to-hold my daughter and my husband lank and lowbred dirty and late single-string lyre.
We recently had a company called Magic Hour provide a free photo shoot for our family. They do this work pro bono for people with cancer, and we are so grateful. The photographer who worked with us, Melissa of Icarian Photography, was wonderful. She made us feel instantly at ease. I have been in the mind of legacy lately, and what could be left for my daughter and husband, and so it was such a relief and gift to have this offered.
Here are a few shots:
I like to read. A lot. On days when fatigue wears me down, I rest here. Sometimes I close my eyes and the same soft breeze that brushes the Golden Gate wafts through those curtains. I remember the outside world, and I remember the long wide ocean that moves not far from me.
Our messy garden. The cherry tomatoes have gone bonkers. The colors and bees and flowers cheer me up. Sometimes the best living is not organized. In disarray you might find your heart.
I’m sick of brussels sprouts, cabbage, broccoli, watercress, and other vegetables like artichokes and garlic and peppers and beets. I’m tired of walking the Green Mile for produce and minding each health-conscious bite.
When you are not a cancer patient (and I am impatient, wanting this to be over, which perhaps it never will be), food is an ally, a benevolent companion. You buy and eat, and cook and eat, in a set of light, repeated gestures that do not cause much pause.
Cancer shifts the scales. Food becomes more fraught. It becomes more heavily weighted with meaning, assessed on a scale of its antioxidant values and not of taste or flavor. I have found myself looking up food names and “cancer” many times during the course of a day in order to reassure myself that my meal is fighting free radicals. Searching for “maitake mushroom” and “cancer,” for example, brings up a list of products, research, and formidably-medical sounding articles that paves the way for each reassuring bite. I have felt, at times, a zealous worshipper at the secular altar called “health.” Too much. A person can become obsessive or worse, self-righteous.
Certain foods can become “good.” Some “bad.” And these judgements can extend to ourselves. You are a “good eater.” (Healthy, weight-conscious, working hard to resist with produce.) You are a “bad eater.” (Steak, chips, soda, sugar. Meh. Pass the beer.)
To. Hell. With. That.
I am starting a new diet called the Ice Cream and F&*k It Diet.
Because, sisters and brothers, you’ve lost enough. You’ve worried enough. You’ve googled and read enough. Stayed up late through the night, scrolled through your phone, lost a body part or tissue, reeled through waves of nausea, stayed in while your friends played, lost a sure future, and wondered-what-you-did-to-cause-it enough. You know what? Here’s the answer: We don’t know. People who jog and do yoga and eat vegan get cancer. People who smoke and drink live long lives. This isn’t an excuse to chuck all effort, but it’s a way to give yourself a break.
In that spirit, which is the spirit of We Don’t Know, So Go Ahead and Live, here are the essential principles of the Ice Cream and F*%k it Diet:
There are no essential principles.
Eat what you want.
Cruciferous (which means, by the way, “of the cross,” as in crucifix, a cross to bear) vegetables are great, but they will not save you.
We will all die. (Don’t say this at parties.)
Is there syrup on it? Frosting? Fat or sugar? You know what to do.
I know I know– “not every day.” Of course.
Popcorn with butter first, then the seats. Bonus if you scarf it before the trailers end.
Be always dead in Eurydice – climb, with more singing,
climb with praising, back to the pure relation.
Here, in the failing place, in the exhausted realm,
be a ringing glass that shatters as it rings.
Background (scroll down to skip): Rilke wrote this entire sonnet – the entire, magnificent series of sonnets – to Orpheus, the mythical Greek lyre player who has gone to the underworld (Hades) to get his beloved Eurydice back. On Orpheus’ and Eurydice’s wedding day, Eurydice was bit by a snake and died suddenly. Orpheus was heartbroken, and was given the chance to earn her return to life. In an agreement with both Hades and Persephone, the god and queen of the Underworld, Orpheus leads Eurydice back through the dark, arteried maze of death, but must promise not to look back, must promise to trust that Eurydice follows behind him as he makes his way back to Earth. Sadly, he fails. His doubts bedevil him, and just before re-entering the light of terra firma, he turns and looks, but his last vision is of her fading back into darkness. It is a tragedy that tears Orpheus apart with grief. Orpheus’ lyre remains a constellation in the sky called “Lyra.”
What could this mean?
We, cancer patients and survivors, are in “the exhausted realm.” We’re not dead – of course not – but a part of us has died: our illusion of ongoing health, an old life that has changed, a loss of innocence, a sense of ongoingness. I feel that to heal completely, this grief must be felt, acknowledged, allowed to appear fully in the body and mind, and then let go.
It is this feeling and letting go that is the challenge, no? To trust in it. Thankfully we are not bound to an oath like Orpheus, but faith in a new life, a new outcome, or some future hope comes with the painful price of a broken past. It is a pendulum of dark and light. An offering of night, an opening called “Day.” Rilke, in his wisdom, did not recommend an illumination or mirror; rather his word is a gift of transparency, one to break: “glass.”
And in breaking, in shattering, he tells me, be the full-throated voice of grief singing.
He ends the poem like this:
Be – and know at that time the state of non-being,
the infinite ground of our deepest vibration,
so that you may wholly complete it this one time.
In both the used-up, and the hollow and dumb
recourse of all nature, the un-tellable sum,
joyfully count yourself one, and destroy the number.
I feel myself wanting to be in the process of climbing, like Orpheus, back to the “pure relation” of family, daily life without the dark blanket of mortality clouding it. I want to sing praise songs to my doctors, medicine, coffee. I want, like Rilke tells Orpheus, to be “the infinite ground of our deepest vibration” in order to complete the full circuit of grief and healing.
And to count myself, and you, sister or brother survivor, “one” and to wipe out all comparisons, all statistics, all outcomes, percentages, prognoses, doses, stages and grades, milligrams and pounds, cycles, infusions, lab work, blood counts, tumor markers, weights, scans, needles,