BEATS: Notes from chemo base camp, part 6

Part of the THIS IS THE MOMENT series

Saturday, October 20th, 2018

Well.

It’s been a rough two weeks. I should have had round 5 of chemotherapy last Wednesday, October 17th, but on the Monday, the usual day for my pre-chemo blood tests and checkup with the oncologist, I was red flagged (emphasis on the red): my hands, my poor, scorched 5 FU tortured hands, didn’t pass muster. Dr. Lougnarath looked at them for a matter of seconds and said (in French): Oh, well then, we’ll skip this week and give Mme Payette’s hands a break.

Empathy. What a beautiful thing. I really didn’t know how I was going to get through the torturous Friday that awaited me, when my hands swelled up like knackwurst on the bar-b-q again.

But the truth is that I really didn’t feel well and hadn’t for days. On Tuesday, I spent hours commuting, then a few more in the waiting room of a hospital associated with the CHUM, with Christian by my side, in order to be seen quickly by endocrinologists (something about an elevated TSH level, which turned out to be no big deal), then back on the metro and the bus and finally my car…and then home.

Through all of this, and for several days previous, I had felt shivery, unsteady on my legs, and 95 years old (or at least, how I imagine that might feel). And so, it came as blessed relief to find out that no matter what my hands looked like, I wasn’t going to have chemo anyway, because my neutrophils count was very low.

Fall, at our new home

You may have noticed all the underlined words. It’s meant to show even those of you who’ve never been near a chemotherapy ward, that cancer comes with its own reality that includes a language that patients and their loved ones become very proficient at in a hurry. Neutrophils—a friendly enough word—basically are those white cells that fight off most of the regular bugs you’re exposed to (in other words: you need those levels up in a hurry).

Monday, October 22nd

This is something that no one tells you about and that you cannot prepare yourself for in chemo. It’s that moment when you hit the wall: the nadir.

Chantal, my pivot nurse, told me today that with a 2-week chemo cycle, a person’s body barely has time to eliminate most of the poisons injected into it before it’s being assaulted again. When it’s your body that’s the experiment (literally: this IS part of a research study), it’s a reality that’s psychologically inescapable.

Fighting cancer Rocky Balboa style

October 23, 2018

I almost typed a different date. I had to stop and really consider where we are on the calendar. For a minute, I was lost.

It’s just one of the ways in which my life has swerved since July. Without the grounding work of teaching, which is so schedule-driven, my sense of time has started to wobble and fade. Even my hair-colouring appointments with Gabrielle, my friend and hairdresser, were as regular as a metronome. Alas, I am now hairless.

The only thing that stops me from floating off and away from “regular” life is the boxy tightness of my two-week chemo cycle. Tests and consultations are almost always on the Monday or Tuesday before chemo, which is every second Wednesday. Then there’s a lost period, that seems to vaporize my life into passivity, naps, lots of television and a feeling of biding my time until…well, at the most basic level, till I can walk and eat and do things like everyone else and then, looking a bit further ahead (dare I?), till I can rejoin life the way it was (I think there’s no going back to that). The way it could be? (Better).

Murray, Derek; Heart; Nuffield Orthopaedic Centre NHS Trust; http://www.artuk.org/artworks/heart-42850

I had a wonderful evening yesterday. My friend Cindy and I went over to the Hudson Theatre to listen to novelist Ian Hamilton talk about his astonishingly successful Ava Lee series of mystery thrillers. He was very sweet and unassuming and wry and sharp as a tack, and we had both read his books, so we were fully invested. We left with signed copies and the feeling that this man cared about the quality of his interactions with his readers. He mentioned the pure joy he felt each time he sat down in his basement office to write the books whose pages his imagination was filling up faster than he could type them. And that, of course, is where I found one connection with this man whose previous career took him all over the world to do business:  in the IMMENSE JOY that flows to him from his writing. This is what I asked him about.

In bed, all wrapped up under the covers at the end of the evening (it was rainy and cold last night), I thought about that kinship. Mr. Hamilton, you are a comrade, in a tiny but important way, because we share a common passion. Then, my phone buzzed, and it was Cindy, writing “Thanks for a perfect evening.”.

Lying quietly after reading Cindy’s phone message (actually, I had to turn the light back on and lean on an elbow to read it), I fell back under the covers feeling ….

Happy.

My goodness. After a pretty shaky couple of weeks, this is how I felt. Happy. I like typing it because it has been so absent. Happy, in the sense of content to be exactly where I was, in that moment. This feeling kept me awake. The unexpected, improbable, delightful lightness of it.

Because I wear ear plugs to bed (though I no longer sleep beside someone who snores), I can hear my heart beat as I lay my head down on the pillow every night. When Cindy’s message buzzed in, I was doing exactly that: listening to the pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …of my beating heart, thinking: you are a wonder, little heart (it sounds little, inside its cage of ribs). How do you continue to beat in spite of everything I’m doing to you? pa-puh, pa-puh, pa-puh, pa-puh, pa-puh, …Does the chemo reach your cells? Is it wrong to ask you to spread its toxins around? pa-puh, pa-puh, pa-puh,  pa-puh, pa-puh, …Do you know there is cancer traveling in the blood you pump? Would you still beat if you KNEW?

 My heart has no choice but to be an accomplice in spreading metastatic cells. It can only beat and pump my blood and keep me alive. It’s the ultimate neutrality.

I hold nothing against it. This heart of mine. It’s rhythms, pa-puh,  pa-puh, pa-puh,  pa-puh, pa-puh, are mostly steady and the pressure it puts on my blood vessels, safe and healthy. It beats though I am in chemo. It beats though my cancer is stage 4. It beats, even when each contraction sends painful 5 FU to my hands and feet. It beats faster, and, I think, contracts harder when I cry. It beats slowly when I sleep.

Last night, I know it beat happily.

Pacquette, Elise J. M.; Protecting the Heart; Bethlem Museum of the Mind; http://www.artuk.org/artworks/protecting-the-heart-192960

 

 

OUT OF THE CAGE

I sit before my computer screen in the dark of morning, and read the scurrilous words of an American president—they are always, always so—whose aim today, as every day, is to set the world on fire, hoping, perhaps, to see his own red, angry image dancing above it all in the flames.

No. No. No.

And then a piece about a housing development in Japan in which the aged are left, each in turn, to a lonely death, disappearing in the choppy wake of filial responsibility.

Yoshikazu Kinoshita, 83, in his apartment in a housing development near Tokyo. The complex, one of the biggest in Japan, is a monument to the nation’s postwar baby boom and aspirations for a modern, American way of life. But it has become known for something else entirely: the “lonely deaths” of the world’s most rapidly aging society. Credit: Ko Sasaki for The New York Times

No, no, no.

While my Inbox fills up, like a boat taking on water, with December entreaties TO GIVE, PLEASE GIVE, PLEASE GIVE. Letters, words and symbols: UNHRC, JDRF, Share the Warmth, Welcome Hall Mission, Amnesty International, Canadian Wildlife Federation, Leucan, Evidence for Democracy, Wikipedia, UNICEF, Movember…their impact obscured by Black Friday, Black Saturday, Cyber Monday. Their voices almost lost in the clamour. There are so many of them.

NO, NO, NO. The sounds inside my head—pain and the refusal of pain.

This morning, I no longer remember why, I looked up John Cage, who said:

“You can feel an emotion, just don’t think that it’s so important.” 

And right now, this sounds especially true. What good is empathy in times like these if it leads, inevitably, to system overload?

This is how I feel this morning. Uneasy with my conscience. Feeling, feeling, feeling that I must make radical changes to my life in order to save my human environment. I apologize, John Cage. But you also said:

Get yourself out of whatever cage you find yourself in.”

― John Cage

 

John Cage, Fire 1985

 

 

 

THE PERSON INSIDE

My son Christian’s life as an emerging actor has already taken him to places I would never dare to explore. One of these is the McGill Simulation Centre, which is an integral part of the medical education of many health practitioners in Montreal. He works there part-time.

Sometimes, Christian’s only job is to offer up almost every inch of his body so that med students can learn ultrasound techniques. At others, the full range of his acting skills is tested, as he works with other actors to bring to life scenarios for young student MDs and even seasoned practitioners, simulating situations that are designed to test the maturity, knowledge, technique, resourcefulness, empathy, interpersonal skills and even just plain resolve of the caregivers.

The McGill Simulation Centre
The McGill Simulation Centre

Listening to his stories has made me realize how difficult medical training is and how much is expected of the students who are often only in their early twenties. It’s helped me to understand how much thought is put into the training of physicians, nurses, occupational therapists and everyone else who passes through there, and helped me to see that acting at its purest is the art of compassion.

 

Guy, Alexander; Crib; Glasgow Museums; http://www.artuk.org/artworks/crib-84339
Guy, Alexander; Crib; Glasgow Museums; http://www.artuk.org/artworks/crib-84339

Last week, Christian was given his biggest challenge yet. He was asked to play the role of a young adult with cerebral palsy whose symptoms include spastic diplegia and spastic dysarthria. In this especially long and multi-scene scenario, his character, Pat, is fighting to maintain an independent life in the face of increasing pressure to place him in institutional care.

A few days into his preparation, I asked Christian if he could show me how he was coming along with his character. In seconds, Christian transformed himself right before my eyes. His body shifted until it had assumed a strange, distorted angle on the couch. His head twisted backward in a way that exposed his neck and made his chin protrude oddly, as though pulled leftward by a painful force and constraining him to look at his interlocutor from an obtuse angle.

Thomas, Joseph Henry; Representing Bodily Pain from the Passion; Merthyr Tydfil Leisure Trust; http://www.artuk.org/artworks/representing-bodily-pain-from-the-passion-153526
Thomas, Joseph Henry; Representing Bodily Pain from the Passion; Merthyr Tydfil Leisure Trust

And then he began speaking. And there was no more Christian. Everything that makes Christian himself had been stripped away and what was left was a thin, monotone and laboured voice, struggling to express itself. Every word seemed to come at a cost to him. Only his eyes were steady. And distressing.

He didn’t make me uncomfortable or embarrassed: he shocked me. Being with him and paying attention to what he was saying, I realized that despite the clarity and intelligence of the thoughts he was expressing, my own mind wanted to reduce him to so much less than he was.

And it became painful to watch my son this way. And it made me cringe, because I know, now, in a way that I didn’t before, what the suffering of this person Christian had briefly become must be. And the struggle. And the injustice of being locked inside a body that cannot come close to expressing the expanse and the dignity of the person inside.

And the vulnerability.

Carriere, Eugene; Maternity (Suffering); Amgueddfa Cymru - National Museum Wales; http://www.artuk.org/artworks/maternity-suffering-160108
Carriere, Eugene; Maternity (Suffering); Amgueddfa Cymru – National Museum Wales

When he came home after his performances that day, Christian told me that he knew that if Pat had any chance of avoiding institutionalisation, that he would have to make every health professional in the scenario like him—fall for him—and begin to root for him.

This is beautiful work.

Every time Christian becomes Pat, even for just a flash, my eyes well up. He does it because he knows he’ll be playing him again soon and he wants to keep him vital and true. And because he cares about him.

This all coincided with a period of sickness that rolled like a wave through my family. One of my sons had fever for three days, recovered for a week and has just relapsed this weekend. His twin was also intermittently feverish and eventually wound up with bronchitis, while Penelope and Graeme, his children, were treated for tonsillitis, otitis and bronchitis. Then it was my turn. Two weeks in, I’m still coughing, but at least my strength has returned.

Until this recent family epidemic, I hadn’t been ill for several years. Sick with fever last weekend and feeling weak and wobbly, I felt vulnerable and diminished and a bit scared. I couldn’t be sure that I’d be able to work the following week. I couldn’t be sure I wasn’t incubating pneumonia. I couldn’t know for sure when I’d be able to go get groceries, or clean the house or do any of the mundane things that make up daily life.

All this brought about by a simple virus. Everything happening out in the world took a back seat to the necessity of recovery. To bringing my body’s affliction to an end.

Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind; http://www.artuk.org/artworks/my-pain-beneath-thy-sheltering-hand-192943
Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind

These past few weeks, I’ve been schooled by life.

Actually, I believe that this should be a daily occurrence, as constant as sunrises and sunsets. Every day should be about gathering in more learning and seeing more clearly. But there’s something about human consciousness that’s flighty and inconstant and it causes us, me, to check out or else be diverted.

At the same time, reliant as I am on the stream of information pouring into my life through the mushrooming screens that have become my most used windows on the world, I’m not growing wiser. My representations of life are hardening around ideas and actions that test the strength of my connections with the world, that wipe away understanding and compassion, and fuel fearful, anxious feelings.

Recently, I’ve felt more like a greyhound on a track than a sentient, mature woman.

And then there was Christian and Pat.

I marinate every day in news about wars, walls and the billions in currency it takes to make each happen; about mass migrations and refugees and camps on almost every continent that have become lawless dead ends where violence and starvation have set up permanent residence; about immigrants, both legal and illegal and about how, for some, living off the radar without status is the brightest option; about national greatness and sovereign borders which seem to depend more and more on turning inward and away. About Others. Aliens. About Them and Us. More recently, about white-nationalism and just this week, an anti-egalitarian, anti-democracy movement skittering behind the scenes and referred to as Neoreaction or NRx.

 

Currie, Ken; The Troubled City; National Galleries of Scotland; http://www.artuk.org/artworks/the-troubled-city-211226
Currie, Ken; The Troubled City; National Galleries of Scotland

It’s a swirling vortex of what’s worse about us. Its clamour is drowning out the calls of our better natures. It’s smothering our compassion with darkness. It’s making us blind.

I think that our civilisation needs retraining. I think serious intervention is required to help us see what’s behind our outer shells, to understand every individual’s struggle, and to embrace the expanse and the dignity of the person inside each one of us.

I think it needs its own simulation centre.

Cauchi, Carmel; The Touch of Comfort; George Eliot Hospital Chapel; http://www.artuk.org/artworks/the-touch-of-comfort-55804
Cauchi, Carmel; The Touch of Comfort; George Eliot Hospital Chapel

 

 

EACH OF US IS A WORLD

While we were grocery shopping last Saturday, Christian spotted someone who looked familiar at the next cash, so he struck up a conversation with him. It turns out he was right. It was the father of a former work mate who had also become Christian’s friend.

Christian had never actually met this man so he went over and introduced himself.

I know the son too, but would never have guessed that this man was his father.

The person before me was a long-legged, small man wearing an ill-fitting coat that would have been refused at a thrift shop. He was thin in a way that suggests neglect or bad habits. His stringy hair had outgrown its cut months ago. His shoulders stooped in a bookish way, as though a permanent pair of reading glasses at the end of his nose had altered his posture and dragged them forward (I don’t think he was wearing glasses, but it felt that way).

He was friendly and yet oddly casual as we parted ways.

While heading to our car, Christian said to me: “You’d never guess by looking at that man that he’s a martial arts master who traveled the world, lived all over Asia, fell in love with a beautiful Bangladeshi woman, married her and came back to Montreal to have two gorgeous kids and live his life, would you?

No. No I wouldn’t have. Not in a million years. He looked like an old-school journalist or wrecked university professor.

This made us both smile. The coolness of it. The unpredictability of humans.

It struck us both—and not for the first time— that there are as many stories as there are human beings. And then some.

I grew up in middle-class suburbia and never moved away, and that has given me a sense that my life is—that I am—mainstream.

Which means generic.

Which means part of something homogenized and indistinct. Made uninteresting by sameness and an unwillingness to be adventurous.

Ugh.

Fortunately, it’s all optics.

We are pieces of a great mosaic; it’s true. And when the lens pulls far enough back—as it does in that wondrous video footage from orbiting spacecraft we’ve grown accustomed to seeing—we disappear and all that’s left is our blue planet.

624664main_station_xl

Move in closer though, and it’s a subjective lens that shapes us: it’s the image of ourselves we receive from others.

unnamed I feel this very keenly now. It took a long time, but I’m much more aware that the different shades of who I am are brought out or suppressed according to how individual people respond to me.

The fact that this is ongoing in my life perplexes me. Apparently, I’ll never outgrow it and never become impervious to it.

If that’s the case, and if I’m not alone in this, then I have to become a much better person. I have to learn to look at others with vastly more seeing eyes. I have that responsibility.

 

Each of us is a world.

 

the-worlds-strongest-librarian-290I was reminded of this just days ago, while reading Josh Hanagarne’s The World’s Strongest Librarian.

Toward the end of his endearing memoir, Hanagarne refers to a passage in George Orwell’s essay, “A Hanging”, in which Orwell witnesses the execution of a prisoner in a Burmese jail.

Hanagarne writes:

This was a man like him. A man of tissue, organs, bones, muscle and, one would hope, a man who had dreams of something better for himself. Then comes the line I can’t forget:

 He and we were a party of men walking together, seeing, hearing and feeling, understanding the same world; and in two minutes, with a sudden snap, one of us would be goneone mind less, one world less [the italics are Hanagarne’s].

For Orwell, the loss of a life was the loss of a mind was the loss of a world, and the world we inhabit is poorer for each loss, for the contributions that mind could have made.”

 

This beautiful message runs through Hanagarne’s unique and honest book, written by a 6’7” weight-lifting Mormon-raised man with severe Tourette Syndrome who has a Masters degree in Library Science and is an accomplished writer.

He’s the gigantic embodiment of the notion that every life story is a unique saga and that literature is just scratching the surface of Us.

Kim Raff | The Salt Lake Tribune Josh Hanagarne, an employee of the Salt Lake City Public Library system, struggled with Tourette Syndrome as a child and teenager before finding refuge in reading and strength training. Hanagarne, author of "The World's Strongest Librarian" is photographed at the City Library in Salt Lake City on April 29, 2013.
Kim Raff | The Salt Lake Tribune
Josh Hanagarne, an employee of the Salt Lake City Public Library system, struggled with Tourette Syndrome as a child and teenager before finding refuge in reading and strength training. Hanagarne, author of “The World’s Strongest Librarian” is photographed at the City Library in Salt Lake City on April 29, 2013.

 

This makes me happy.

And sad, because while reading The World’s Strongest Librarian, I was reminded of the far-too-many moments of unkindness I’ve been guilty of in my mainstream life; how often I have failed to treat people with true empathy because I failed to imagine their world.

But I was fortunate:  I wound up teaching French to brand new Montrealers and learning to see the worlds they brought with them.

Hani Al Moulia

A few days ago, a story appeared on BuzzFeed that is a testament to the value of each person’s, each family’s story. It’s a short photo essay written and shot by Hani Al Moulia, a young Syrian, who arrived in Regina with his family after living in a Lebanese refugee camp.

The characters of this story: a father, a mother, four brothers and a sister, have already experienced so much, and yet of course, their stories are being written every day.

Who could have possibly imagined that they would be where they are now? Who can imagine where they are each headed?

It’s good that we have those questions in common.