I never thought I’d live to say it, but here it is: It’s my daughter’s first day of senior year.
Cancer has now been my companion for over five years. It’s been an unwelcome visitor, a deadly ghost, an iron wheel turning under the street. And yet my daughter lives, I live, my husband lives—and this first day back at school is a sword in hope’s stone. We claim it, it is ours.
There will be no trumpets. A few screens will go black. We’ll look at the grass, finches will twitch, and the train calls will continue until dawn.
But eventually the fog will clear and in friendship with the scrub jays and bright red zinnias I get to say: I’m in remission, my daughter’s back at school, nothing in this can sway.
It’s been months since I’ve updated this blog, and life has rolled, slid, lurched, stopped and gone and done quite the turnabout.
The short of it is that the cancer is in remission. The most recent PET scan showed that there is currently no evidence of active disease. The tumors are still there, but the chemotherapy (Carboplatin, Gemcitabine) has rendered them dormant. Those tiny varmints are sleeping. Listless. Dull. Eyes closed, little one.
This is of course “good” news in the conventional sense. And oh how I pause at this word “good.” Because “good “ is supposed to mean happy. It’s supposed to mean a party, a celebration, cakes with candles and the luck of being alive. An arc of fireworks to disguise lamentations. Weathering calamity. See how the showers hiss home. Almost witchcraft.
And that’s what my current state feels like: outlier status with a dose of cautious optimism, all while standing on an airport’s moving walkway. A flat escalator that has suddenly stopped its trajectory to death.
It’s quite a shock.
No Evidence of Active Disease. NEAD. What this means is that I’m stopping chemo for now. My bone marrow gets a reprieve. Immunotherapy (Tecentriq) continues. But the side effects (extreme fatigue, nausea, headaches, constipation, depression, hair loss, low blood counts, body aches) should slowly ease up. This summer will be one of healing. I will go slow.
And here’s the thing: I did nothing special. No special diet, no extra workouts, no special herbs or positive meditations or supplements. I just went to chemo and did the best I could. I drank Coke once a week and ate some sugar. I rested. I drank coffee with friends. I’m not vegan.
I’m saying these things to offer hope, and to get across that I’m not special. I’m not chosen or especially worthy—no sainthood badge here. I’m just lucky.
Lucky to be alive and to walk and sing (tho my teen daughter would disagree there) and gripe and garden and be.
And I know this may not last.
But oh how the soil sings in my fingers, how the seeds fall so.
There was a time when the evening light shone just so, a time when you leaned back, glass in hand, and in good company, talked and listened and laughed. The table might be full, you could follow your friend into the kitchen and ease in to stir the still-warm sauce. All around a warmth. The sizzle of meat. Clinks and short silences and nowhere to need be. The threats of the world ebbed and you were well.
Fragments of that life scattered after the cancer diagnosis. Life was no more a surety, the needle’s draw drew breath with it, too. Hospital visits filled the days. And as I begin to recall those earlier days, I remember that friends and family formed a nest of support where I could hide, gather strength, grieve. They gathered pieces of my life like birds gather yarn bits and floss, and made a home. I will forever remain grateful.
But the light always changes, must change. Friendships and relationships felt the tides of time ebb and flow in new ways, and I found myself re-negotating, re-feeling what it meant to interact with others as a terminally ill person. This was entirely unexpected and sometimes brought anger and new grief. One friend burst out laughing when I told her of my cancer. It stunned me. Our last two encounters have been within the last two years. She spent both times talking the entire time of carb dangers and the powers of essential oils. I no longer see her.*
Another friend had been carrying many secrets, and they asked repeatedly for me to keep more. I couldn’t do it.
And I had to begin removing myself from people who could not listen. The lack of listening began to irritate me more and more. I have often been on the quieter side, but I grew angrier and less patient with people who dominated our time. Time was all I had left, and I wanted a voice in it. I also wanted silence. I wanted joy. I wanted depth and a space to grieve.
I would find myself deeply angry at having let myself be bulldozed by someone’s need to vent for hours. It struck me as deeply selfish. And here I must own my lack of assertiveness; I should have spoken up, but my reserves were low. I was tired and sad.
So I let some friendships go. (Family is a whole other post.) Some of these were a relief. Others I miss. And some friendships deepened. Others with chronic illness, caregivers, neighbors—so many of these grew into what felt like family.
I do not regret these shifts. They were necessary and largely inevitable.
But I long for a time when cancer didn’t filter through each word and day. I miss banal, workaday casualness, conversations about supper, a lightness to my orbit. Cancer is so damned heavy. For everyone.
I had scans in July and all the tumors are stable. No growth. Holding steady. Starboard as she goes. Life has settled into a routine of chemo every three weeks, with one week of recovery and two weeks of near-normalcy. One week on, two off. This rhythm stabilizes my life and makes it easier to plan rest, meals, and activities. It gives me hope. And while I know I’ll be on chemotherapy forever, this chemical pace gives room for living and for life.
I am slowly learning how to accept the likely-permanent paralysis of my right arm. It is a slow process. Dictation software helps, and my daughter and husband have rallied, too. But the magnitude of it – the utter uselessness of this limb now, the sudden, startling flopdowns when it’s unsupported, its fishlike swing and sway, its blankly numb detachment from the whole of my body’s honed, coordinated machinations, its sheer weight and cumbersome ostracism, a rogue gong, a flaying odd pendulum—is a continuous, displaced, awkward reminder of cancer treatment’s costs. What is the cost of living? What are you willing to pay?
It is all we have, this sad giving. Reluctantly we open our fists, offer our veins, bare our heads, and display and platter our full selves for the reckonings of scan results. We hope for months, beg for years. We search online, query the doctors, roll over with the real and dream upheavals of this nightmarish, dazed half-life we plea to withstand. Oh we are a desperate chorus of endurers hoping to be whole.
And each day is one and one, the word “more” a felt bead on a rosary we hope to hold.
I want to take a moment to thank the readers of this blog. Your responses, your emails, and your support mean a great deal to me. I have recently developed a very serious case of neuropathy in my right hand, which is such a cruel blow, as it is my writing hand, working and coffee hand, and now it burns and burns. I drop spoons, fumble with combs. So I cannot reply, offer the comments, or develop this blog as much as I like. I can’t visit or support others’ blogs as much as I’d like. But I read when I can, send love and support, and in this sister- and brotherhood that is often silent know that I stand with you.
It is January 2020. Each marker of time is a signpost, another hill or copse on the orienteering map of cancer unknowns.
It feels bewildering to be here. Each day is some new emotional or physical landscape. Today it’s weak and singed fingers. It’s thinning but not bald hair. It’s anger at the world and gratitude for light.
I hear the Jim Nabors song from a far radio somewhere:
Sunrise, sunset, Sunrise, sunset
Swiftly flow the days
Seedlings turn overnight to sunflowers…..
This is a song about childhood passing, but it speaks to me too about time. Opening and closing. Starts and stops.
* * *
I had a CT and bone scan last week. There is “good” news. “Good” is in quotation marks because when you’ve been with this disease, this abusive lover, as long as I’ve been (almost four years now), you begin to detach from each peak and valley. Detachment is an emotional survival tool. I cannot anymore ride with the extremes of shock or giddiness of this body’s data. I take it as it comes. I hear it and think “What does this mean? Ok, what next?” I no longer trust even the positive outcomes. Though I celebrate and though I thank, I have also numbed myself in order to protect myself from the fatigue of grief’s extremes.
The “good” news? And it is good. My lung tumors have shrunk considerably. The bone metastases are stable. Steady as she goes. The current treatment is working. All signs point north.
The price? Numbness, burning, and neuropathy in my writing arm. Crashing fatigue and nausea for two weeks each month. Anger and irritability. Family and friends who I worry are getting sick of all these peaks and valleys. I’m so grateful they’ve stood by. Their continued presence is a kind of sunlight.
Yet tempus fugit. Time flies.
This life, it is a kind of No-Man’s Land of in-betweens. There is no France, no England. There are only remains.
* * *
This post sounds darker than I feel. Reader, if you were with me here, I’d sit us down for coffee or tea and ask: How are you? How is work? Or How are the kids? Always I am working to turn my gaze back to the world, the people here and now, away from the body. I must remember. I can go to dinner, walk, plant a few seeds or bulbs here and there. Each day truly is a gift.
And yet my own truth is that there is damage, too. There are ruins to rebuild, landscapes to level. Cinderblocks to place.
It is one whole circuitous map, this rubble and this rain.
The mind must attend to itself, to its own existence. It scans, assesses, summons us to rise or sleep.
It is a self-perpetuating organ that attempts to drive its own perpetuity.
When cancer invades the body, as it has mine, now my arm bone and both lungs, the mind – my mind – moves into focus, fixation. All thoughts lead to tumors. I wake up and scan for pains and aches. Could be a recurrence.Could mean death.
Fixation turns to obsession and closes me off from noticing the sunrise, listening to the mockingbirds of this morning, or just closing my eyes and enjoying being. I lose life. In dwelling on cancer, I lose precious time.
It’s a difficult balance. My mind, in its drive for survival, hungers for wellness, insists on roving for any possible bodily blip, taking up emotional and cognitive space for simple living.
I understand this need. It is simple care driven to the end of the continuum, labeled now as “hypervigilance” or “anxiety” on the scales of self-awareness. I understand this need, but it interferes with my life, and I struggle to practice living each day without succumbing to grief, despair, or panic.
There’s another dark side to this self-monitoring: narcissism. A medically-induced self-centeredness. Constant bodily scanning, medical appointments, discussions about “how are you” and the morning confrontation of lymphedema, arm pain, and hair loss (yet again) turn my gaze inward. Some of this can’t be helped, as the new normal of my life means accommodating these side effects. But I don’t like it. And I am keenly aware of how much of this chronicling of my ailments is so self-ish. As in, revolving around me.
Hello, I say to the mirror, noting my falling lashes. Hello, echoes my mouth.
I turn away from this reflection each day and make myself engage with the world. One must converse with both the bodies and birds, deliberate on the nature of things, I hear my old professor say. I will not be a prisoner to the tyranny of disease, I will not allow cancer to become a home base. Life continues. People have lives, lives that I am genuinely interested in hearing about, want to ask about, want to be a part of outside of illness. Weeds need pulling. Apples need picking. A friend wants coffee, the leaves are already piled.
An owl hoots and the morning garbage truck roars down the road.
My body has changed, and I’ve got to learn to accept its changes.
It’s difficult. I used to run 10ks, work full time, whip up recipes from Bon Appetit, shop, garden, plan social events here at home, dance with my husband and daughter, flip pancakes, and generally fill our house with the kind of life I’d always wanted in a home. It wasn’t perfect, but my body was an actively orbiting planet around a warmth I hoped to harbor. I worked hard. Like many of us in our productivity-obsessed culture, I bought into the feelings of self-worth associated with being “on top of it.”
This new body is different. Parts of me are gone. I’ve lost strength, lost mobility, lost stamina. A good friend of mine, a fellow traveler on this road of chronic illness, made an analogy that I come back to often. He said, paraphrased, “You used to have 50 straws in a cup. You held them and you could use them every day. When you woke up, they reappeared.
Now, you may have 25, or 20, or 10 straws. They take longer to come back. And when you select your straw (or task, or thing-to-do) you must make more strategic choices.”
I think of this often. Fewer straws, less energy. Fewer straws, less done. Messier house. Forgetfulness, fatigue, contracting the circle of my hoped-for life.
It’s not that I’m choosing to wallow in grief, although I think it’s essential to our healing that we recognize and allow ourselves to feel our losses fully. It’s not that I’m hanging on to loss. It’s that I feel like I’m in a process of transitioning from an able body into a differently-able body, and what that means is that less gets done. I attend fewer social engagements. I cook less, I attend fewer meetings. I set up fewer social engagements because I’m afraid I’ll have to cancel. I miss my friends.
So, what takes the place of my previous productivity? What do I do with the empty cup space, the space where the straws used to sit?
I rest. I meditate. I go to doctor’s appointments and physical therapy (7 months later, and still going). I write when I can. If I’m able, I’ll do a few chores. I sit and talk with family. Drink coffee or tea. Sometimes I binge watch Netflix shows. I lay down and think. I read.
Sometimes the pain from my surgery and chest scar tissue renders me incapacitated, unable to concentrate on anything but pain relief and sleep. Sometimes the fatigue is so extreme, as it was this past weekend, that I am barely able to rise from bed.
And so I am learning – in the present continuous, as it’s a process – to be compassionate with my new limitations. I am learning to test how far my right arm can reach, how far I can walk (a 1 mile a day workout so far is about my limit). I turn my gaze to the gratitude in small things, to the garden with its blooming borage, ballhead waterleaf, scarlet flax, bachelor’s buttons, poppies, and violets. I think of water, of berries, of the rise and fall of a mockingbird’s tail. I think of spring and summer, my daughter and her laugh, my husband and his deep, true goodness.
This learning is not a straight line.
What keeps you grounded as you transition and think of your new life? Your body’s losses, its gains?
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?
Despite flu and pneumonia vaccinations, this month I came down with some awful virus and acute shoulder pain. It’s been miserable, and here’s why:
1. My already surgery-incapacitated right arm, a zombie appendage of its former self, can barely reach past my shoulder. I am a person who puts dishes away, who likes to put up pictures. I like gardening, reaching over the sofa edge to put my arm around my guy. I am also right-handed. Now, with a stiff neck, stiff upper shoulder and shooting nerve pain down my right arm, all physical therapy exercises have come to a halt. Waking up involves a pain and capacity assessment, which then determines my mood, which unfortunately revolves around “cranky,” “tired,” and self-reproach at my limitations. I really hate chronic pain. I really hate cancer.
2. And the virus! March, according to my General Practitioner, has been peak flu season. While the vaccine helped, some other microscopic parasite decided to colonize this body. Score one, virus, for the timing of it: reinforcements, aka my immune system, were slow to rally, and even now, in conquest, the landscape is parched and needs tilling. Meaning: I’m really tired, rest a lot, cancel plans often (and am truly grateful for the patience and understanding of friends) and must practice patience.
3. That word: “patience.” It’s a tough one. There is so much I want to do, and so much urgency. I am sick of waiting, sick of living my life on the timeline of my illness. The self-help gurus echo in my ear with their calls for positivity, for strength, for “not letting cancer get the best of me,” and I get that we occasionally need those prompts. But for the love of Beezus, call off the joy. I mean it. You get to throw down the spoon, you get to binge watch reality crap. Some things just stink and neither Brene Brown or Deepak Chopra (despite their good intentions and expertise) can – or should – take you out of your anger or impatience or grief.
4. “The only way out is through,” and come the courthouse of full healing I’ll testify to that.
How do you deal with the chronic, unrelenting nature of cancer or another illness? In what ways do you allow yourself to be in the dark of it?
It’s just one thing to hold a cup. It’s another thing to sip. It’s one thing to close your eyes, another to see. Frame by frame, each of these adds up to living. To life.
Another: my daughter enters the room, sits to check her phone. Her thumb strums the screen. Her neck is a swan staring down at the glass. All around us is the noise of living: the street traffic, dawn on a Sunday, this Sunday, here and now in the paper piles, the dishwasher hum, the ongoing ordinariness of morning.
I have passed many such mornings in a rush. So many days have rolled by in a turning of chores, tasks, to-dos. And the trance of pre-cancer life is one of there is tomorrow. You’ll get another chance. It is of course a myth, but it is one we live by.
But along comes cancer in its red truck and its repeating, manic music of death. Of dying. After nearly three years in and out of treatment, I still wake to its songs. I still wake and do a mental body scan with questions such as: Does my head hurt? How is my breathing? I check for aches, for pains. I imagine the worst. Anything lasting longer than two weeks warrants a call to my oncologist.
Life now is in-between. In-between scans, in-between appointments, in-between one medical event and another. Note the dash between “in” and “between.” It is a space I currently claim and occupy. It is hovering, unnoticed, a connector that links one state to another. A grammatical and embodied corpus callossum.
My body is a radar station and my mind is on alert.
I’m in a holding pattern now. Treatment for the recurrence to my rib is done. Scans are over. I’m NED (no evidence of disease) for now, but the likelihood of a third recurrence is high. Every day I am learning to integrate the Fear of Recurrence into the reality of Get on With the Day, trying not to let the one disable the other.
This anxiety is real, and many cancer survivors need support in coping with the PTSD of treatment and long-term side-effects. There is no shame in this. It’s also worth noting that in terms of human evolution, living with a long-term, life-threatening illness is relatively new. Our brains haven’t been equipped to process or deal with such a scenario, and so survivorship requires practice.
“Practice.” Such a reassuring, powerful word that speaks to honoring the effort, honoring each attempt.
Each day I practice meditation and breathing.
Each day I practice honoring this body and its strengths.
I practice self-compassion, and extend this outward to loved ones, friends, community, the world.
“No mud, no lotus.” Thich Nhat Hanh
Practice isn’t about perfection. It is, in a nutshell, doing. Doing without judgement, doing for the sake of itself. In this sense I find it immensely liberating – there is no call to be good at it at all.
What are you practicing these days? What practices help you cope with the stressors of cancer, of disease, of life in general?