Terminal is Liminal, With Updates

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.

Silence.

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.

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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.

And love.

They are the only way  – is it forward?

Is it out?

 

 

 

 

 

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

 

 

 

Jealousy and Metastatic Cancer with a Disappointing Ending.

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.

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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.

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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.

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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.

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I feel obligated to write something hopeful but I can’t.

It feels more authentic to me to just stay here and say: sudden.

To say: time.

 

 

I am not a comfort.

 

 

 

I Have Stage IV Triple Negative Breast 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.

pexels-photo-776945.jpeg
For the record, my cakes are much messier. 

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.

  1. A 12 cm tumor in my rib area.
  2. Bone mets to my arm.
  3. A suspicious liver lesion, too small to biopsy. On the radar.
  4. 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.

One step at a time.

 

 

 

 

 

 

 

Wallace Stevens, John Cage, and Cancer. “Everything we do is Music.”

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.

white and red house surrounded by trees at night

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.

blur close up conch focus
Inside is future or a past. 

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.

wood landscape nature forest
Photo by Pixabay on Pexels.com

What is your new way? What are the new experiences, sounds, sights that you are attending to as you recover?

 

 

 

 

Living with Chronic Pain Or Why I Cancel Plans at the Last Minute and Throw Down the Wooden Spoon

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.

forest photography
On bad days, I hang out here.

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?