Cancer and Boundaries: What the Compass Told Me

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.

 

person holding compass
Photo by Valentin Antonucci on Pexels.com

 

 

 

Between Scans is an Emerging Place of Refuge

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.

It’s exhausting.

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.

pink and white lotus flower

“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?

 

The Sky is Not Falling Yet: On Remission and Fear.

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.

nature beach holiday sand
Hopefully sipping a mojito or a mai-tai. 

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.

And a single hair.

Love, wobbling, out.

 

 

 

 

You Are a Charged, Lit Bulb: Waiting for the SCAN

It’s coming.

bright bulb close up conceptual
Photo by Pixabay on Pexels.com

It’s the CT, PET, or MRI. The acronyms don’t matter as much as the fear, because what if? What if there’s a blip, a lighting up, a growth, a recurrence, an expansion, a concern? And what if there isn’t? What then?

(“Clear,” calls the Emergency Medical Technician before shocking the heart.)

Cancer is an abusive lover. I’ve learned not to celebrate too much when things go well, because the trust in a long-term, healthy future is gone. Even if the scans show nothing, trust in the world has failed. The sure sense in an ongoing future has failed. Planning a year or five years ahead with certainty? Failed. This “lover” – cancer – is always lurking, its revenge always a possibility. It hides its power, it lures you into comfort. It charms you back into living. It leads you back into your body, the ease of each day’s choreographies: movements through the front door, work, friends, gestures here and there, family, food.

Oh hello, hair, hello travel plans — let us begin again. Let us pretend with the ease of the healthy-bodied living that we are ever ongoing, that we will not, in our careful financial records and remodeling plans, ever perish. Tahiti? Paris? A mani-pedi scheduled for Friday. Oh, and the workout.

Scans jolt me out of this trance. There is the word we are all trying so hard to avoid: death. Dying. A finite closure, that the body and mind and this life as we know it will end. Will.

And so, I have a scan today. A CT scan to see if this current treatment of Xeloda and Taxotere are working to shrink this recurrence. If the tumor has shrunk, we continue, proceed with later surgery, and keep cancer at bay for awhile longer. I’ll take it.

If it’s not working, then we don’t know. Clinical trials, hope for the best.

Filaments, fibers, fears.

“Zero at the Bone”*

I am searching for the language to describe the feeling of a future being gone.

The ways in which cancer robs words, robs next week, next month, next year. Robs plan-making, robs a body of potentials.

This is not the time to be positive.

Allow for grief, allow for anger.

Is it thievery? Theft? Or slicing? A person could imagine meat now. A dog running into an old-time butchery, stealing the prize steak. The butcher himself holding the meat cleaver high, white apron bloody, yelling, chasing the dog into the alleyway. Future lost profit.

Not a rug swept away. An entire floor.

Birds here for the season.

The abrupt “off” of a heat-relieving fan.

Such quiet.

In bed, all imaginings ending with “no.” Remaining awake.

When listening to clocks, counting.

Music in the entryway and briefly the scent of perfume—

hollered greetings hill to hill,

strangers.

 

What strangling might mean if a throat was held by air.

Absence.

Remaining awake to think of it

 

*Link to the Emily Dickinson poem from which this title is taken.

snake on grey wood
Photo by Pixabay on Pexels.com

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