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.
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.
It’s the post-Thanksgiving hubbub and cozy couch life. We’ve eaten as a family and hung out with dear friends, and gratitude for each small bite abounds. We bought and decorated our tree yesterday, which was strategic planning on our part, as my next chemo cycle started Friday afternoon and we knew it would wipe me out. So Friday morning, we scrambled. The tree is lopsided, imperfect, and beautiful. There’s a metaphor there for living, I think.
I’ve started a new chemo cycle. The immunotherapy I was on, Tecentriq, nearly eliminated the larger tumor under my armpit. Unfortunately, as cancer will do, some cells developed resistance to the immunotherapy and moved into my lungs. I now have 5+ tumors in both lungs. It’s impacting my breathing and causing some coughing. This was terrible news for our family and has caused yet more grief. We’ve told our daughter about this recurrence, that it’s treatable, and that we’re taking things one step at a time.
Those conversations with our child – they are the worst, most wrenching part of this dread tunnel.
And so I’m now on Carboplatin, Gemcitabine, and Tecentriq, all at once. After my first dose last month I slept for nearly 36 hours, with one – or two- hour wakings for water and food. I kept very little down. This treatment plan, if successful, might add another year to my life, but I will be on it forever or until it stops working, and sick for 1/3 of the time.
It’s the worst treatment to date. For about 7 days after, I am very sick, despite anti-nausea medications and steroids. Carboplatin and Gemcitabine can really knock down blood counts. Some people need transfusions, and I hope I do not.
How do I feel about this? How does one go forth, knowing that 1/3 of his/her foreseeable life will be flu-like nausea and pain?
I still choose to remain in gratitude for each day. Each day these eyes manage to open is one to be thankful for. I planted daffodils and crocuses to invest in next spring, and I make wishful, hopeful travel plans. My daughter still has homework, my husband likes a good meal. Friends are treasures, better than gold.
And yet I’m so sick of being sick. So sick of relating to people through the lens of disease. There are times when I wonder if someone is reaching out because of obligation, or because of something else. I blame no one for this. It’s the nature of cancer, and people mean well. But the lens of cancer forces all kinds of urgency, can make people want to be a “good person” and reach out, when really it’s not necessary. And yet sometimes it is. And the hard part is to navigate asking and receiving, distance and proximity, and knowing it’s clumsy and hard and the forging of a new relationship with people around you.
And understanding that the lives of others go on. Your disease is not the world. People have kids and dilemmas and issues and stories that I want to hear about, and to be a part of outside of cancer. The continuum still goes on.
In a lopsided, beautiful tree, the continuum still goes on.
If you are reading this, you have or know someone with metastatic, or terminal, cancer.
For this person, or for you, a line has been crossed. A threshold. A door which can no longer be closed.
This makes metastatic cancer a space where transitions take place: there are shifts in the body’s capacities, changes in relationships, emotional high and low tides, financial ebbs, spiritual reckonings and ends. One website has a definition for liminal that I really like: “The word liminal comes from the Latin word limen, meaning threshold – any point or place of entering or beginning. A liminal space is the time between the ‘what was’ and the ‘next.’ It is a place of transition, waiting, and not knowing. Liminal space is where all transformation takes place, if we learn to wait and let it form us.” (Inaliminalspace.org)
To wait, and to let form.
And there is grief. Undercurrents of it as wide and deep as gyres linking east to west in surges of the unknown. Where am I? What is next? Who is this new, carved, scarred and asymmetrical self? Where are these treatments taking me? And when will I arrive?
Questions are the language of the liminal traveler. The departure island no longer exists, the destination unfolds during the duration, and so all we have are pivots, coasting, and turns. We are always consulting the map, which is the body, and often a scan. And so we query and trace and consider, uncertain and unresolved.
Waiting. Letting things form.
At some point I turn and recount the slow degradation of my body. Even as I write “my,” there is a part of me that does not want to own this, I reject and reject the ownership of this disease as “my,” but there it is, near my rib again, in my arm again, proliferating in its malignant exponentials. And so in three years the changes add up: mastectomy, lymph node removal, oophorectomy, rib removal, hair loss. Once I sat in the doctor’s office and caught my reflection in the mirror. I could not help the gasp of sudden, utter grief I felt at this, this ogre-like body I saw facing me – bald, gashed, pale, a compression-sleeved arm covering my eyes. “A transition.” A transition into what? Who?
The kind doctor: What’s going on?
Me: I used to be a person.
Kind doctor, with a big intake of breath, taking my hand: You still are.
How this humanity breaks my heart. It is the one sure map I keep as I go forward.
* * *
And so where am I? I’m in cycle 6 of immunotherapy. Scans next week will determine if it’s working. If it isn’t, my treatment choices become limited. I’m on a list for a local hospital’s clinical trial. I could also try carboplatin – it’s the one last actual chemotherapy that might work.
We’re meeting with the palliative care team next week to discuss end of life plans. This doesn’t mean hospice is imminent or that I’ll die soon. It means that we’re planning a roadmap – there’s that word again, a way going forward, a plan as if – for pain management, resuscitation choices, financial directions, and so on.
My energy ebbs and flows. Some mornings I can walk and get groceries, but by afternoon I usually need a nap. Some days I am totally prone, in bed, can’t get up. I often have to cancel plans. Some relationships have fallen to the side. I have had to set boundaries when needed in order to preserve what time I have left. This is not personal. It is survival. And pain flares, stops, flares again in no predictive pattern. It is all liminal, day by day, and puts burdens on my family and friends. For their kindness and understanding I will always be grateful.
This liminal living is not all sadness. It has given me time to listen to the backyard finches, stop and hug my husband and daughter, watch the apples ripen on our tree. To have coffee and cherish friendships. It’s given me time to listen and to slow down. To read. To watch bad tv and enjoy it. I flew to Santa Monica with an old high school friend and ate nearly $100.00 worth of lobster. Bliss!
If there were a scroll with one destination, I would write friendship and offer it to you.
Everyone has their orbits, their ranges of motion, their finite, functional horizon between the sun’s rise and fall. Before cancer, these were self-evident; I had no need to articulate them. My body had a momentum that fit the workaday arc of most people my age, and then some: I ran 5 and 10k races, worked out, gardened and wrote, all while maintaining a full-time job and a home. These were facts.
Once cancer entered my life, the ranges and orbits changed. I find myself wanting to find a finite word for those changes here, such as “narrowed,” or “were reduced,” or “became limited,” because in one sense those “reductions” in abilities were physical bricks. Truths. A gash where my breast used to be. My new swollen, compressed arm.
But words implying reduction aren’t entirely accurate either. I say this because reduction implies permanence and certitude. A “reduction in abilities” doesn’t encompass the sudden surfacing of a kind of necessary attentiveness to the body, which is always in flux, always changing. And the cancer body becomes amoebic in its illness: cells die and return, fears resurface, hair grows and falls, skin tenders after sutures and heals, muscles stiffen and restretch, and the mind learns a new vocabulary of being. “Scan” is no longer about the landscape outside; the word beams inward, searching for malignance. “How are you?” is no longer innocuous and quotidien; laden with the weight of mortality, the phrase becomes a question of life itself. How long will you live? What is happening in your body? How frightened should I, the asker, be? There is such freight with the language. A kind of lightness has been lost.
And so, who am I in this new body? Where do I go? Bewildered in some desert, then a city, then a bed, then a corridor – who? Where? What?
One metaphor helps me now: the compass. It is astral in the sense of earth-only, grounded here and then here. It is a traveling re-orienter. To consult it means to know where the one thing is, which is “direction,” which is not a destination per se – for the cancer patient, true north, or “health” is an implied and ongoing possibility. Some of us are further from this than others. And some must close their eyes, rest, and stop.
The particulars: My body is changing, not for the better. My tumor markers have increased, and despite eating and eating, I can’t gain weight. I get so very tired. Restless legs torture me in the evenings, and scans are coming up. Like the compass, the general sense must reground in the particular and its details. I am here now, and I consult and consult the gravity below. In my hand is a small circle. Not much else is known.
“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.”
I’m sitting here, staring out the window, and I can’t believe I’m writing that I’m stage iv, that I’ve reached this stage, that it’s here, the “terminal diagnosis,” and that I am now in the momentum of the process of prolonging survival and not searching for a cure.
My world has been a world of bewilderment, grief, a spinning tilt-a-whirl with dead ends, crazy laughter, heart monitor beeps and unending not-ending. My emotions have been a see-saw with no fulcrum, test after uncertain test, and decisions, palliative care, medications that leave me in a vague haze of feeling good and lethargy.
And yet sometimes, like today, I wake up and feel almost normal. Coffee tastes like dark and unsweetened caramel and is such a pleasure. I can clean a closet, I can bake a cake.
This all began with shoulder pain in March. Like many women with pain, I minimized it. I was back at work, had recovered from major surgery, had had clear scans in January, and overall felt good. I was back to “normal.” The motions of my life had been reset, and I relished the sense of routine. My husband and daughter visibly relaxed into the days and the ordinary bickering and goofy jokes settled back at sea level. “The house was quiet and the world was calm.”
But the pain wouldn’t go away. It was insistent. It felt like a large hard marble pushing against my scapula. By late March, I was getting odd fevers in the afternoon that would sometimes rush to 102, and in a matter of an hour settle back to normal. My body ached. The fatigue was crushing. After work, I’d pop ibuprofen, curl up in bed, and crash into oblivion. I knew, as we do, that something wasn’t right.
I emailed my oncologist. As is HMO protocol, she referred me to my general practitioner (GP). I went to see him, explained my shoulder pain and fevers, and he resolutely stated that my symptoms indicated a virus. He told me to rest, take ibuprofen as needed, take liquids, and “keep an eye on it.” This was early April.
I waited two weeks. I didn’t know that during this time, my tumor(s) were growing. Triple Negative Breast Cancer (TNBC) is an aggressive and fast-moving cancer. My doctor’s misdiagnosis gave time for “Charlie” (my tumor’s name) to gain space.
The symptoms got worse. I started calling in sick to work. The pain was near-excruciating, and 800 mg tablets of Motrin were doing little to assuage the pain. On a Sunday, I called my HMO and asked for a same-day appointment. That day, I saw another doctor. She repeated my previous GP, declaring “It sounds like a virus,” and then told me to wait it out. I pointed out that I was a cancer survivor and that my previous recurrence began with shoulder pain. Looking into her computer screen, she said, “I know, I know.” Handing me her card, she said she’d prescribed some shoulder cream and told me to “keep an eye on things.”
The tumor was growing. At this point I could not lift my arm to comb my hair. I could barely drive. Sleep was fitful. Turning to my right side was agony.
Neither doctor asked to palpate my shoulder. Neither doctor asked to even see it.
On that Monday I emailed my physical therapist, who was aware of my pain, and demanded that I see someone specializing in shoulder pain and oncology. I scored an appointment that week with a sports medicine physician’s assistant, who looked me in the eye and heard. She peeled off the gown and touched my shoulder. Already there was an abscess, already she could see. She paused and said, “I hear you.” I wept. This power in listening and believing the patient, in my own, felt experience – it was such a relief. Quickly she sent an email and the wheels began turning, so that soon there was a biopsy, with test results, and then the plan.
A 12 cm tumor in my rib area.
Bone mets to my arm.
A suspicious liver lesion, too small to biopsy. On the radar.
Radiation, then immunotherapy.
And so this is where I am. I’ve finished radiation and am now starting immunotherapy. The tumors are inoperable. I’m receiving palliative care and pain medication. My oncologist tells me that immunotherapy is the best that is currently available, and there is a 25% chance of efficacy. These are difficult odds to remain optimistic about, but we are taking this one day at a time.
On the other hand, I’m up and writing again, and cleaning a closet, and going on short walks. The sun and moon are visible, and the backyard Golden Delicious apple tree will soon bear fruit.
I love my husband and daughter so much. My friends, they have become my family. The support has been a deep well of love, and I am so grateful.
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?