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.
I was recently diagnosed with stage iv triple negative breast cancer. This wasn’t my first time with it – three years ago, I received my initial diagnosis of stage 3 of the same disease. Once I finished treatments – mastectomy, chemotherapy, radiation – I was told I was “cured.” I thought I was done.
Not so. In 2018 I had my first recurrence (a tumor near my ribs) and had surgery to remove it.
In the spring of this year, late March 2019, nearly three years to the day, I was diagnosed with a second recurrence. This time, metastatic. Another tumor in the same area as last year’s, plus lesions in my right upper arm bone, and a suspicious, to-be-watched lesion on my liver.
The cancer had spread. It had metastasized.
And what “metastatic” means to me is “inoperable.” It means terminal. It means The Rest of Your Life.
It means: You’ll never be free of it, it’s here to stay.
The hope I once had of returning to normal is gone. Gone. I will now be living with cancer for as long as I am alive.
And so once again I make adjustments. I grieve, my husband and I talk about our options, we regroup.
I wanted this post to be about jealousy. I wanted to talk about what this new diagnosis means in terms of loss and change, and the way I feel and talk about time. I wanted to talk about what energy means, what an average day used to feel like, and what it is now. How making coffee was just that, and not an arduous series of breaths, painful movements, knocked-over cups and then utter, exhausted relief in crash-sitting to drink it.
I wanted to talk about the ache I feel when I scroll through social media sites and witness families smiling in the sun, a photo of a mother and child in an inner tube on a river, a lazy and slow river where on a beach dogs and small children upon arrival run to greet them. I wanted to write about the long-held ache in my throat when photo after photo of mountains, some friend’s reunion in a cabin, the Paris couple’s kiss, the neighbor’s good times at the local pub, and all of their clicked “likes” and “looking good” comments show up on my feed as if everything were normal. As if time, like the lazy river, was to be had in these long hours, fistful after fistful, all of us just looking around in total wonder, endlessness its own known gift.
Dear god, I miss the eyes half-closed sheer bliss of not knowing it, all’s well, fat tire tube and being just another body in a lit, slow-moving, unpunctured ring.
I wanted to talk about the italics of energy and normal, the new italics of time. Each of these words is stretching forward past itself in an attempt to grab more, take more, because their own current letter legs are weak. Today’s an unknown, the words seem to tell me, so make sure there’s a bit of them in the future. Bank all three: energy, normal, time. Always lean towards the next hour, the next day.
-Is not how I really want to live, though. Too much leaning forward means a weaker grounding, means the weight on one’s footing is likelier to sway. It means I’m not here fully. It means rush and hurry.
I’m so jealous of other people’s lives. Their health, their beautiful families, their cancer- and fear-free lives—
the ability to plan, to think in one- and five-year increments. The gift of time that is handed to them. The safety glass that still protects their days — it’s an illusion of course but they still have it—
Maybe that’s you? Lucky. You’re a lucky one. And you’re innocent of course. How would you know, did I know, that we had that luck when we had it? No one does. It’s the nature of health to be unseen until it’s not. It’s a Plexiglass dome on top of a building.
For me, that safety glass is gone now. A wind is blowing and always will blow. It’s a closer step now to a long way down.
I feel obligated to write something hopeful but I can’t.
It feels more authentic to me to just stay here and say: sudden.
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?
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?
So good to see family and friends, to laugh, and to reconnect. My husband and daughter are able to relax a bit more – I see it in their released muscles, in their trust. Looking at candies and cakes and shiny red wrapping papers has lifted my spirits, and the smells of pumpkin, cinnamon, cloves, and nutmeg have infused me with some kind of winter-and-food inspired warmth.
Grounding. Here and now.
My strength is near-normal, the physical therapy exercises are working, and morning coffee brings such hope. We’ve gone on a few short hikes and planted some bulbs. I’m returning to work soon, and we’re even making summer plans.
We’re daring to hope this remission lasts awhile. We’re daring to trust in life again.
What else can we/I do, really? Giving up is not an option, and I’m tired of grief.
Hearing the diagnosis of cancer is like being suddenly thrown and held underwater. At first, you come up for air in frantic sputters. You flail. You are desperate for help. If you are lucky, you receive a life vest or ring, or some kind soul/s swim out to keep you afloat. You can rest, then. Backfloat. Look at the sun. This small, watery world becomes swimming, becomes wait.
The thing is this: it is permanent. You can never fully leave the cancer sea. Despite the stories of full remission, which are wonderful and true, and my hope is to be among them, cancer does return. In many cases it becomes a long-term disease, resisted for many years. Sometimes it is fatal. Sometimes it never returns. Why are there such varying outcomes? Like so many cancer factors, the answers are complex. A person’s health condition at diagnosis makes a big difference. Comorbidities (and I dislike that term) such as diabetes, smoking, and high blood pressure can impact outcomes. Some cancers are highly aggressive and fast-moving, some are slow and pokey. Genetic mutations play a role, as do age, gender, weight, race (unfortunately, and equity of care is a huge issue), tumor size, and stage of diagnosis.
But the fear of cancer’s return haunts me. Each new ache, each pain, can turn into a dark spiral of imagined lethalities. There’s a term for this long-term cancer worry: Damocles’ Sword Syndrome. In the original story, young Damocles admires the wealth and “luck” of King Dionysus of Syracuse. To teach a lesson, Dionysus allows Damocles to sit on the throne, giving him all of his riches. But over Damocles’ head is a sword, hanging by a single horse hair. A single hair. Damocles cannot enjoy the opulence, the power, and the bright wealth around him, as he worries and worries about the sharp and dangling and weighty weapon.
Cancer survivorship has its own sword, its own hair. Remission – and health – are a sure relief and wonder. It’s where I live now, not on a throne but a kitchen chair. Each day involves a series of routines which include physical therapy, meditation and writing, among others – that helps ground me in this day. But – and there is always that caveat, you can’t fully release, for always there is and yet or but or for now, and that is the crux of this, isn’t it? which is how do I go on? – there is the anxiety of a single “hair” – a scan, an ache, another lump – that lurks. The hair. It’s there. You just have to look up.
So, what to do? I have no easy answers. I have gone to support groups, have asked for help as needed. Understand the impact of this process on people around you, and let them talk about it. Also helpful: not talking. It helps to go hiking or to the mall. Writing helps. Exercise helps. Forgetting helps. Focusing on the garden or the trees or the dog or cat, making a meal. Somehow it helps to re-notice the love in ordinary living, the basic goodness of going on. This table, for instance. These chairs.
Not much wisdom here, I’m afraid. And here’s the truth: I am afraid. But here I sit, on this basic wooden chair, and am learning to practice living with both each day’s opulence and cancer’s sharp glint.