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?
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?
Our small raised bed has weakening wood, the seedlings and sprouts are in disarray, and there’s a scattering of borage that’s about to rule one corner. It’s rainsoaked, a bit disorganized, not terribly well-tended. Its current aesthetic is wait and see. It is a small plot of patience.
I have, on my way in and out of the front door lately, paused by its side to ponder, regard, consider. Why? Two weeks ago I dispersed, with a most unscientific and erratic glee, small handfuls of wildflower seeds from a store-bought packet. I tossed about little pockets of what looked like tiny bent twigs, sand bits, and burrs. Then I covered those seeds loosely with dirt and went on my way. I went to work and back. I carried food. Books, papers, lunches came and went.
But after days of rain some tiny, hairs-breadth little sproutlings are emerging. I crouch down in the mornings to look at them. It’s nothing really, that sitting and staring, but it’s also everything. This comfort. This stopping. This delight. It’s surprise and hope and nurturing and a tiny tip of awe. There’s mystery, elegance, and momentum. Growth. And blooms yet to come.
And I can’t help turning my gaze to my brothers and sisters on this path through cancer, and how horrible it can be, and how illuminating and surprising too. Turning to trust in the world again, to consider the days ahead, is, unlike planting, no easy gesture. This body that has given us life has also attempted to take it away.
I look at the ground and think of floods. Mud. Stones and hail.
The unresolvable, ongoing pendulums of illness, health, life, death. Sunlight, rain.
Yet here, in their tiny upstarts, stand future flowers: hollyhock, scarlet flax, bachelor’s button.
California poppy. Cosmos. Coreopsis.
What can we do but plant? What can we do but wait?
And be here now, fully and with thanks, while they take root.
The diagnosis is difficult enough. Once you hear the word “cancer,” the world becomes a blur of shock, grief, appointments, treatment plans, and phone calls. The ground beneath your feet is unstable, and your future is no longer sure. Your calendar is no longer yearly; it bends into a series of hours, days, possibly weeks — months and years if you are lucky.
With cancer, time changes.
Time compresses. It becomes urgent. It becomes How much longer? and When will I know? It is waiting, waking, sleeping, weeping, and more waiting. Time turns into a photo negative, a dream-state in which death – and/or the fear of death – feels imminent.
It is a cruel and double whammy that, while processing the enormity of a cancer diagnosis, you must also face its interruption of the momentum of your life. You must suddenly make tedious and quantifiable decisions with long-term consequences. Cancer impacts it all: where you live, your relationships, children if you have them, and your finances. Everything becomes negotiable in your priority to survive. And this includes bill payments, travel plans, life insurance, savings, living trusts, disability, college or retirement – in other words, money. Money symbolizes hope. It can symbolize your future. And if you’re still working, as I was and am, a flurry of changes must be considered.
Below is a list of my own financial decisions. These are always up for negotiation due to the risk of recurrence, my work situation, and energy levels. And I do not in any way recommend these steps. Everyone’s situation is different. But I do want to share this roadmap in the hope of supporting someone else through this process. I also want to preface this by recognizing that I have a spouse with a health plan, a stable living situation, and a support network of friends and family. I am aware that many people struggle and do not have this support. With that in mind, I’ve included a short list of links at the end of this piece to help you make your own decisions about how to proceed, and to find support (empathy, godspeed) if you need it.
So, a few months after the cancer diagnosis, here is what I did:
1. I stopped saving for retirement.
You might think this decision was foolish, and I don’t recommend it. But consider: The prognosis for stage 3C triple negative breast cancer, with lymph node involvement, felt terribly grim (SEE IMPORTANT FOOTNOTE). Major surgery, chemotherapy, and radiation were in my future. I was in shock and grief, and wanted the money to help with treatment, counseling, and possible bucket list traveling with my husband and daughter. And the truth is that I don’t regret this decision. Not one bit. The small pleasures it granted our family were worth it. Noteworthy, too, is that this decision has also recently changed. With my recovery from this recurrence – a second round of chemotherapy and surgery – I’m shoveling small bits back into the 401K. I might very well live to retire, so with one big toe into the tepid IRA waters, I’ll start to save again. Crossing my fingers toes.
2. We made a Living Trust. Through an online legal service called Nolo (we have no commercial or other interest in them), my husband and I filled out the paperwork and got it done. It was simple and straightforward, and I felt such relief after completing it. After cancer, I had this terrible fear that my husband would also get ill and that our daughter would be left destitute. Completing these documents forced us to answer questions and make definitive plans for the worst case.
There are many companies that provide this service online. You can also hire an attorney, and they probably have better resources and more in-depth information about specifics, but the cost, likely over $1,000.00, is prohibitive. We didn’t have the cognitive or financial bandwidth for it. We live simply and don’t have complex financial dealings, so the online way worked for us.
3. We bought more services. Not things, not stuff, but help. One of the first services we purchased was a housecleaner. Twice a month, we hired a wonderful duo that came and deep-cleaned our house. May larks sing their praises. My energy levels tanked after chemo and surgery. Our family still had work, school, appointments – things to do. Coupled with a tired and sometimes cranky mama, this was a recipe for laundry piles, paper piles, random tufts of cat hair, stacked dishes, and an overwhelming sense of household chaos. But thanks to our housecleaners – whom we still hire, and tip, and thank, and are deeply grateful for – some sense of organization has stayed. Other services we purchased were: gardening, tree trimming, and Uber (after surgery).
4. We spent more on food. We bought healthier groceries and healthier pre-packaged foods. I didn’t and don’t always have the energy to prepare healthy meals, so it was often the grocery store salad kit, organic eggs, and splurging on the Whole Foods salad bar. Eating fresh produce requires frequent trips to the grocery store, meaning more money spent. We also treated ourselves to the occasional fancy meal. Worth every penny.
5. We bought less stuff. Gone were/are the days of impulse clothing purchases, for example. The trendy catalogue companies know our budget runs low. The library is the sole source for books (sorry, Amazon and independent booksellers) and thrift stores cheaply relieve any sudden need for novelty. We were never big on furniture, but any décor dreaming these days is tempered by bills. Dreaming it shall be. I’m ok with that.
Here’s the thing: I don’t know how long I have left. The scales weigh in favor of recurrence, meaning 1-2 years, but there’s always a possibility of long-term remission. This means Be careful with money. Be careful with your time. This has translated, financially, into permission to spend more on experiences, travel, life. Less stuff. No new car, no new table. Not a problem. But Paris? A five-star meal? Maybe. Possibly.
The way is open.
If you have cancer, what changes have you made? What are some of your considerations on this time- and life-changing path?