ABOUT RANA

PART OF THE THIS IS THE MOMENT SERIES

May 30th 2019

The results of my latest CT-Scan came in a few weeks ago, and they remain favourable.

Nicolas Martin, (b.1980), “Woman Sitting on her bed”

Once again, there are no new tumours and no growth of the existing tumours. Just like the two previous scans.

The CT-Scans give my life in treatment its rhythm. Every eight weeks marks a beat. Between the scans, if I’m feeling good, I do, on occasion, observe my mind escaping into flights of fancy, allowing me to experience surges of optimism; tiny glimmers of hope that work their way through the cracks in my defences, whispering indulgent thoughts like: Maybe this will last for years…Maybe the tumours will remain dormant…

 These thoughts float just a little while, and I hold on to them because it feels good to experience buoyancy and light-heartedness. Just a little while.

And then another part of me shuts that down…but not before anxiety slithers in. Why would this happen to you? Why, when so many others experience the despair of treatment that isn’t working?

Over and over, every eight weeks, I go up, then down, then fall into something between hope and resignation.

I’ve begun to realize, too, that I am, in fact, living inside a very specific countdown. It’s a two –year countdown, and I’m now down to 15 months remaining. That’s the duration of the research protocol (clinical trial) I’ve signed on for. It hit me a little while ago that every month that goes by, every CT-Scan cycle, inches me closer to the end of the trial and its expensive immunotherapy drugs.

And then what will happen to me? The doctors tell me that my results are uncharted territory for them. That they have not seen what they’re seeing with my body’s responses in previous stage 4 patients with my type of cancer, and feel confident that it’s the immune drugs at work. This strange stasis that my body is in…How long will it last? And how long can a person stay on medications that aren’t meant to be taken forever (and cannot, because my life is simply not worth that much health-care money)?

Jean-Michel Melat-Couhet, “Swept by the Wind”

I go up and down like this all the time. It reminds me that the word disease means DIS-EASE. I am uneasy inside my skin. I am not myself. I am besieged. And, as every person with a serious illness knows, this is simply the way it is, and I must keep finding ways to adapt and deal with it. And remember how fortunate I am.

* * *

I’m sorry for my tone. I received news yesterday that weighs heavily upon my heart.

I was scrolling through Facebook and suddenly, there was the radiant face of a woman I knew. It was Rana. The Facebook notice stated that she died two days ago.

Let me explain.

Rana was my French student four years ago. Born in Lebanon, she had lived many years in Kuwait before arriving in Canada and eventually Montreal. She was the mother of a beautiful girl who is now a teenager. She had a PhD in something related to nuclear pharmacology. She was an artist: a jeweler who also created works in which she combined painting, fabric and her jewelry pieces.  She was a deeply spiritual person.

She was extraordinary. The company where she worked and where I taught French several years was very demanding of its staff, and so it happened once or twice that she was the only person in her group who was able to make it to class—which turned the latter into a private tutorial or, in our case, an hour and a half of one-on-one French conversation.

This is how I grew to know her quickly. In French, we would have said that we had des atômes crochus, a pretty expression that means that we instantly hit it off, that we spoke the same language (no matter what language each of us was using).

And then the contract ended, and I didn’t return to her company. But we remained in contact, on Facebook, and managed a lunch together one summer day. It was on that day that I realized just how beautiful a human being she was. Her life was not free of stress and problems. There was a scarring divorce that festered over child custody issues, and she had just moved into a new condo with her daughter. But Rana seemed to rise above the muck and remain just, true and decent. And always loving. It was also at that lunch that we discussed all of the things that lit us up; our shared view of life—its expansiveness, endless promise, and limitless possibilities to grow and love. We parted that day promising to make these meetings happen more often. We stayed in touch on Facebook.

Jon Naar, “Shadows of Children on Swings”, Munich 1963

But I never saw her again.

Yesterday, right after learning the world had lost her, I went back to Facebook to try to collect our years-worth of exchanges on Messenger, but her site had already been cleaned up and emptied out, and a new page, with a beautiful photo of her, opened recently, in preparation for her death, I suppose.

I left a message of condolences on her new Facebook page which is being curated by her cousin, I think. And then I sat with Rana here, alone, for a long while.

Rana succumbed to a cancer that had already ravaged her lungs and bones when it was diagnosed. I wish I could remember how long ago, but it was at least two and a half years. She had gone to the hospital with unbearable neck pain, and found out that a vertebra had collapsed because of a tumour growing there, that her tumorous femur was in danger of being crushed under her weight as well, and that her lungs were full of cancer.

I found all of this out after simply messaging her one evening—just to catch up on things. We immediately switched to our phones. From her hospital bed in Montreal’s Jewish General, she told me everything she was going through. I remember that her voice was full of energy. Her scientific-medical literacy made it possible for her to approach her situation calmly and analytically. She trusted in modern medicine. She trusted that she would receive good care, and that her pain would be managed. She believed her situation would improve.

I was careful about what I asked her and how I phrased things. I tried to match her energy and tone. We made plans to get together when she was well enough to leave the hospital.

Clyde Aspevig (b.1961)
“The Evening Still…”

We never did get together.
I was diagnosed and I think, meanwhile, she was beginning to fail rapidly.

She’s gone now.

Yesterday, after leaving my message on her Facebook page (which was filling up with wishes and expressions of love and sympathy), I didn’t cry. Not right away. It wasn’t, it isn’t what Rana was about. Rana is at peace. I know this. And she is everywhere. She was so loved.

Later though, the weight of Rana’s death grew heavier and heavier and I knew that as soon as I said out loud: “My friend Rana died”, that I would not be able to hold back my tears. Simon was the first to arrive, and I told him, and then, once he’d held me and spoken kind words to me, I spent a while in the kitchen, preparing supper and sniffling. And I was with Rana in spirit.

At bedtime, a second wave of tears hit, and this time they flooded me. My mind was stuck, wondering what her last weeks and days had been like.

Rana. I know she bared it all with dignity. I know that she smiled too, when she could, because I feel sure she believed that she would be united with her mother and others she had lost in her lifetime.

I don’t think she made it to the age of fifty. A beautiful branch has broken away from the tree of life.

When things get hard, in months or years to come, I will seek inspiration from Rana who was light and life and love.

Photo by Ashley
Photo by Ashley Perreault

 

FOR THE SAKE OF SURVIVAL

Part of the THIS IS THE MOMENT series

May 1st, 2019

I suppose that today, of all days, it’s appropriate for me to scream May Day! May Day!

It wouldn’t help my situation, or make any difference though, would it?

I started chemo in late August 2018, which means that I’ve just entered month number 9 of chemotherapy (these days, “treatment” feels too much like a euphemism).

Yesterday, I went to have my 4th CT-Scan done at the CHUM (including the original diagnostic scan). Since I began chemo, I’ve had a CT-Scan every eight weeks—a requirement of this clinical trial. By that count, I’ve passed 32 weeks of being poisoned for the sake of survival.

Yesterday started off just after lunchtime in such a weird and inauspicious way. With my scan scheduled for 3 pm, I planned to go first to the hospital’s open eating area on the first floor, where I’ve spent hours this year, waiting for whatever was next. It’s a vast, windowed, very bright space with dozens of tables where people sit—including many hospital staff—to eat and unwind.

This time, however, before I had even reached the escalator landing, I could see that there was something crowding everyone (they all seemed bunched up) and creating shadow. When I reached the top at last, I was met by an 8-foot high, 25-foot-long puffy pink tube, with lumps and bumps here and there on its surface. This was the monstrosity that was responsible for making seating far scarcer than it should be. When I walked further into the hall and found a spot to sit (I shared a table with a nurse who was on her lunch break), I realized that the big pink tube was a shadowy tunnel that people were visiting. But what I felt when I read the signage in front of it…

It was a giant section of intestine, made to be strolled through. It was there to educate hospital staff and visitors about colorectal cancer.

Fuck. Really? (That IS what I thought) I mean…really? It was hard to see it as humorous. It felt more…ominous. As mental preparations for a colorectal cancer CT-Scan go, this was truly awful. And definitely unwelcome. And I didn’t visit it! There seemed no need to go see tumours and polyps up close and Godzilla-size.

Thrown off somewhat, I ate quickly and then went up to the 14th floor for a blood test that’s now required by Bristol- Myers Squibb before each scan: a simple embryonic enzyme test, which, I think, measures tumoural activity (my results have so far been good, dropping steadily, which is what the oncologists want to see).

My univein !

The only good, fat surface vein I have for blood tests is on my left arm. Just the one. There simply isn’t anything visible to work with near the surface of my right arm. This, as time goes by, will become a problem. My poor univein is beginning to harden, though up to now, the CHUM’s phlebotomists (drawing blood is an art!) say that it still has bounce (they say: Elle est encore rebondissante!”). But, because I knew that a catheter would be inserted into my champion vein for the Ct-Scan, I asked the nurse if he could perhaps use a vein on the surface of my right arm, one that Chantal, my research nurse and guardian angel, told me was big enough. He opted instead for a vein on my right hand. With his magic hands and a tiny needle, he managed to get what he needed. It was only when I entered the Tomodensitométrie area (in English, that translates as “computed tomography” or CT), that I felt pain and throbbing in my right hand. When the nurse installing the catheter in my left arm (in my plucky univein) saw my sore hand, she said: “Il vous a rupturé ça pas à peu près!” which translates to something like: “Whoa! He blew that one up good!”

There I was, back in an area I’ve written about previously, wearing a hospital gown, and not much else except my shoes and socks, in the company of close to a dozen others adults who looked about as attractive and gloomy as me.

But this, of course, is where it all gets so serious. And it’s when the culture clash between the worlds of medical professionals and the people they call patients is so clear to me. It must be hard to lead with your heart when the patients who stream through your department all look alike: gowned and pale, their education, work life and personal histories unrevealed. They, the medical staff, are so comfortable in their working environment and we, the patients, are anxious, and diminished, and longing to get out and go home. And the technicians who operate the super-high-tech diagnostic equipment are generally kind and polite and concerned that we fare well while inside the giant, noisy scanners and imaging machines, and tolerate the claustrophobia and the chemicals injected into us, while we lie there terrified of what these machines will tell the radiologist who will decode their data…

Yesterday, I sat waiting, in my gown, between a fifty-something man and an older, heavier woman, who gave off signals of wanting to be left alone inside her bubble. The man seemed content to sit in silence too. It makes so much sense: aside from each person’s disease or reason for being there, what is there to talk about? Apprehension was the elephant in the room and it was visible to each of us.

And then, the first woman was taken to her test, and another woman, younger (perhaps in her late forties), sat down beside me. We didn’t get to speak for long, because I was soon called, but in the brief time we had, I mentioned to her that I could see that this wasn’t her first scan, because she was sporting the same regrowth of grey-white hair that I was— though hers was shorter than mine. I just wanted her to know that I saw her as a sister-patient, that she had all my empathy.

Then she said: “And I’m going to lose it all again. My treatment isn’t working. It isn’t working And I have to start chemo again.”

It was such a heavy, meaningful, ominous thing to say, and as she spoke, there was still the trace of the smile that her face was meant to wear and that might otherwise come so easily to her…

My name had been called. What could I say? All I could manage was (in French): “We’ll see each other again here, with our beautiful pink complexions…” and then I was led off to the CT-Scan area.

What will her scan show? What will mine?

I should have taken her in my arms and just held her.

Carson, Rosemary; Patients Waiting to See the Doctor, with Figures Representing Their Fears; Wellcome Library; http://www.artuk.org/artworks/patients-waiting-to-see-the-doctor-with-figures-representing-their-fears-125800

 

 

 

 

 

FILTER-LESS

Part of the THIS IS THE MOMENT series.

Thursday, April 18th 2019

On Tuesday, April 15th, Notre-Dame de Paris, one of France’s greatest buildings and symbols, burned.

As is always the case in the 21st century, it was a catastrophic event that virtually everyone, everywhere, could watch. A disaster witnessed by human eyes on a planetary scale.

Human responses to its destruction by flame varied, people fitting the images being transmitted by every means possible to them into the critical context that made sense in their reality, whether it was religious, spiritual, political, cultural, economic, aesthetic…

I found it very hard to watch as the flames tore at the building, devouring it; billowing out, fed by the combustibles within and the oxygen provided by the ambient air. I wasn’t able to watch those scenes for very long. Something truly awful was happening in Paris, again, and for an instant, my thoughts veered to the possibility that this was one more nightmarish terrorist action, but they didn’t last. The day may come when extraordinary gathering places like the Dome of the Rock, or Hagia Sophia, or Notre-Dame de Paris fall to the same impulses that are tearing humans apart in the early 21st century, but surely, we’re not there yet.

It appears that, at least in the case of Notre-Dame de Paris, we were not.

I guess that by now, you’re taken aback by this post. What can this event possibly have to do with the very small, personal story of living with cancer that I’ve been telling, bit by bit and week by week, for the past 9 months, at this blog?

The impulse to write to you this time comes from a memory that was evoked as I watched the beautiful old cathedral suffering so much damage.

I’m not a traveler. I haven’t seen very much of the world with my own eyes. But I have seen all of Canada’s provinces except for Newfoundland (I’d love to correct that) and the territories to the north; and I’ve seen large swaths of the United States. I’ve also been to England (in the summer of 2015), and France (in the summer of 2012), each time, to visit one of my sons.

While in France, Simon, my friend Louise and I were based in Montpellier, where Simon was doing post-doctoral research. We branched out to Carcassonne, and also made sure to set aside three or four days to see some of Paris. I think we may have been a bit unlucky because we hit a heat wave, with temperatures between 31-34 Celsius that made almost everything exhausting and unpleasant (we spent most of our visit to the Louvre in the basement, trying not to pass out).

Then came the day we set off, on foot, to l’Île de la Cité, in the centre of Paris, on which Notre-Dame de Paris was built. It was the tourist season. There were crowds everywhere. The lineup to visit the cathedral had been forming for hours, the  long, serpentine gatherings of people stood right out in the baking sun, waiting, so we decided to begin our day by visiting the adjacent attraction, which was a guided exploration of the catacombs that run under the Cathedral grounds. We were so happy to find ourselves out of the sun and hidden away underground, where it was cool and quieter.

We emerged refreshed and ready to join the lineup for the cathedral itself. It seemed to move much faster than we had imagined and soon, we stepped out of the heat and into the fresher, darker atmosphere of Notre-Dame.

I had no expectations going in. None. It was packed. There were people everywhere, bunched together, moving around with no sense of place or of decorum. They were probably just happy to finally have something to do and see. It was all so strangely anti-climactic.

And then, moving further in, I looked up.

To the vaulted ceiling which my eyes followed up and up to the roof; to the rows and rows of breathtaking arches, so beautiful, so impossible…

And I started to cry. Not just a few wet sniffles. I was overtaken by emotion so intense and so full that all I could do was cry and cry and cry. The tears spilled out of me. As I continued through the building, pushed along by people, I felt utterly filter-less. Defenseless. What did I feel? What was this emotional spillover all about?

I remember looking at the vaults and thinking of the people who had built them, painstakingly, at tremendous personal cost. Hundreds and hundreds of lives over centuries. Generation upon generation, dedicated to a single purpose, day after day. The vaulted ceiling was so beautiful. There was such presence there.

While I no longer adhere to any specific religion, I am a spiritual person and I think that I was also responding to the presence of the numinous in that space.

I don’t know what the human soul is, or whether it exists, but I know that on that day at Notre-Dame de Paris, I was immersed in emotion that I can only call soulful.

What caught me most off guard on Tuesday, when the images of the fire began flooding the internet, was the remembrance of that outpouring of tears on that day in 2012, and the recognition that moments like this have been part of my life over and over since my cancer diagnosis.

Adams, Alicia Melamed; Tears; Ben Uri Gallery & Museum; http://www.artuk.org/artworks/tears-191484

You see, one of the side effects of my new life with cancer is the sudden and surprising outpouring of tears and the constriction of my face and chest that accompany them. This has been happening to me from almost the very beginning. But they’re rarely tears of sadness, though I have those too. No, these tears are just like my Notre-Dame tears. They’re released unpredictably and they’re difficult to stop. I’m almost always with someone, in a conversation that, for whatever reason, veers to something small, or perhaps more substantive, that is just honest; true; real; and which becomes connected—even if only in me— to the ephemerality of my situation, to the essential nature of human life, to the deepest roots of love. It happens while I’m speaking. I just seem to melt into tears.

Most of my entourage knows that I’m fine. I say that I’m not sad, but that I simply have no more filters. I tell them that I realise that there’s no point trying to bury my tears. I can’t. They just flow, and seem to do so only when conversation has reached a soulful place. Even if the exchange is about someone else, my filters can fail. The membrane that separates me from a river of emotions is foundering.

These moments are like my experience inside Notre-Dame de Paris. They’re moments when all of the fear, compassion, pain, worry, joy, wonder, gratitude and love are flowing one into the other, and I am overwhelmed.

Why hold them back? My life has come to this. To times when what I’m feeling is the essence of my existence. I think my tears appear when words are insufficient.

They feel GOOD.

Conroy, Stephen; The Garden; The Fleming Collection; http://www.artuk.org/artworks/the-garden-218248

 

 

 

 

 

 

 

 

 

AWAY FROM AND TOWARDS

Part of the THIS IS THE MOMENT series.

Monday, April 15th 2019

Spring has sprung a leak here, in Hudson, but no one’s complaining because winter has been chased away. The ground around the house is covered in a thin, tired old layer of dirty, disintegrating snow covered in old leaves and small twigs and branches from the trees (I suppose this is what pine detritus looks like—maples just wallop everything around them with large, heavy old branches that break free as they succumb to age and the damage done).

After a beautiful sunny and warm Sunday, Monday has brought rain. But I have Christian here for the day—for the next three days, in fact—and that brightens everything. And I need some of that light and lightness of heart.

I cried myself to sleep last night, or tried to, but wore out my eyes with all the tears and made the astonishing discovery that the rivulets of tears were so full of healthy materials that when I stopped and picked up a book, I could see everything clearly. EVERYTHING. Eight and a half months of chemo’s ophthalmic side effects washed away (they have, of course, returned this morning, and my vision is as goopy and inadequate as usual).

I had the blues. A somewhat mild but pervasive case of them. Their sadness has been niggling me for days. It’s been more than nine months since we moved in here, and the same amount of time since I’ve been living with the knowledge of my cancer. I’m now seasoned in the dynamics of such a life.

We’ve all heard of “two steps forward and one step back”, and while this semi-optimistic description of hard-won, slow progress resonates, it doesn’t capture life with cancer, or, to be more precise, the mind’s meandering assimilation of the reality of it.

I’ve come to see my efforts to live with cancer as a self-erasing pattern of advance and retreat, and it’s getting to me. I want to try to describe it to you. It’s of such importance, this thing I’m trying to figure out.

Thomas, Philippa Mary; Mrs Alington; Great Bardfield Historical Society; http://www.artuk.org/artworks/mrs-alington-2686

In the first place, in my mind, cancer is OF ME, but it’s also NOT ME. It’s separate from the person I am, the one who lives inside this skull and body. I AM NOT MY CANCER; and if this is so, then my task is to learn to co-exist with it. To be with it, as serenely as possible, to know it’s there, but also, to move away from it, in a constant, repeated ebb and flow, a forward and backing away movement, that allows my conscious mind to distance myself from it, so that I can live outside the uncertainty that it has splashed all over my life: so that I can find respite from the sadness and pain of imminent loss that darkens everything if I let it; so that sometimes, I can think and feel beyond the aches, pains, and alterations of my body that complicate my days and mess with my morale, isolating me from the joy of life and of being with others.

Cancer pulls and repels me ad infinitum, and this tide-like dynamic isn’t about progress. In some ways, it feels more like breathing: in and out—being sucked in, and then coming up for air. Or like sliding back and forth between two lives: the first, the one that extended itself far into the illusion of a future full of the promise of aging; and the second, the reality of a life occupied by certain, daily struggle and my far more imminent death and separation from the future of my loved ones.

How does this play itself out in my daily life? In a list of random thoughts and ways. Here’s a sampling:

  • The seeds of love are sown among human networks every day. Yesterday, I was with Penelope and Graeme, my 7 and 5-year-old grandchildren. Penelope was telling me about her swimming lessons, and what she does in grade one, and how the ballet school she attends has asked her to double or triple the number of weekly classes she takes because they want to move her to the advanced level, and how she’s willing to start with a one-week ballet workshop this summer and then, well see…
Eardley, Joan Kathleen Harding; Children and Chalked Wall No.2; Lakeland Arts Trust; http://www.artuk.org/artworks/children-and-chalked-wall-no-2-145281

And her brother Graeme sat next to me as we read the Pokémon encyclopedia together, identifying the evolutions of most of the creatures, just an hour or so after we had returned from shopping, all of us together with his parents, for his birthday presents (because he turns 5 next week), during which he had been so reasonable and showed not a glimmer of greed or selfishness…

And at one point, with P&G on either side of me on the couch, I took each of their hands and pressed them together over my lap, to show them that Graeme’s were already the same size as his sister’s. And it seemed like a good time to talk about such disparities, and what they might mean, as neither was sure whether it was a good or bad thing that sweet little Graeme has large strong hands…

And during every moment of these hours spent in such perfect company, I carried inside me the feeling of having been prematurely aged by cancer, and of not being as sure of myself as I once was with them. Cancer was there, in the room with us. It heightened my sense of separation from them because it took up space that has its own weight, its own gravity.

  • Several months ago, while watching the movie World War Z with Simon and Christian, in which infected, ravenous zombies are terrorizing the whole world and attacking every person in their path, I learned that I would have been spared. Sick people like me, with cancer and other diseases, were left alone by the zombies. Christian and I, upon realising this, looked at each other and smiled, even stifling a giggle. Quickly though, the other message of this scene hit me, then my sons: whether by disease or design, inclusion or exclusion, being culled is still being culled.

First, there was escape into a movie, then cancer pulled me away again.

  • I still have time to read. And I’ve been reading all over the place, trying to catch up with blogs posts I write for the Pointe-Claire Library and simply enjoying escaping into imaginary worlds. But reading has also provided one of the clearest, smoothest paths to approach cancer and dying, and I have found myself eagerly following it. It’s where I’ve most felt the sliding back and forth between lives and needs: between cancer and cancer-free thoughts.
de Ville, Nicholas; Still Life with Stools and Books; The Fitzwilliam Museum; http://www.artuk.org/artworks/still-life-with-stools-and-books-5784

And so, despite everything I’ve written here, I do approach death and dying willingly, in ways that work for me. I must prepare. Denial is impossible for me. That’s why I’ve just picked up Maggie O’Farrell’s I AM, I AM, I AM, Seventeen Brushes with Death, which is getting rave reviews, and have just ordered Jayson Greene’s Once More We Saw Stars, in which he shares the story of the death of his tiny daughter, just a couple of years old, as the result of a freak accident.

I don’t find anything morbid in these books, nor do I find them depressing. What they allow me to do is to approach death over and over; examine its shape and its impact on those it touched; learn from the person who is dying or, finally, observe death’s survivors.

Every book I have read about death and dying so far has shown me families of survivors who are able to speak of their lost loved one with joy and still such an abundance of love. And this helps me to stay on the track that is leading me towards death knowing that it’s possible for me to leave life without causing irreversible suffering. The only prize worth keeping an eye on. Life goes on!

  • Every day, several times a day, I receive short quotes from an app named We Croak. Simon had originally heard its creator talk about it on CBC Radio, and I loved the idea of being reminded of my mortality at random daily intervals. This was many moons ago.

And then there was my cancer diagnosis. And when the first few quotes buzzed in on my phone, We Croak suddenly appeared to me in a different light. It was, briefly, macabre, and I wrestled with the impulse to deactivate it.

It still reminds me several times a day that I am mortal. Sometimes it does this philosophically, sometimes poetically, sometimes medically, sometimes religiously and sometimes brutally.

But I kept it as just one part of this path that I walk along now. It’s a path that backs me away from my cancer for essential, replenishing and escapist periods of time, and also leads me toward my cancer, from which I still have many lessons to learn.

This is the quote that buzzed on my We Croak phone app just minutes ago. It’s everything I’ve just written, delivered clear as day.

A dying person may book a vacation you know they will never take, plant a tree, buy a car, and shave their head. Make room for rage. Make room for clarity and insight, composure and acceptance, and throwing out a bedpan across a room.” Sallie Tisdale

May I continue this movement away from and towards what my cancer comes to deliver.

Paul, Celia; Study: My Mother and the Cross; Lakeland Arts Trust; http://www.artuk.org/artworks/study-my-mother-and-the-cross-145440

 

 

THE UNPRESERVABLE TRAIL…

Maussion, Charles; Portrait; Sainsbury Centre for Visual Arts, University of East Anglia; http://www.artuk.org/artworks/portrait-1893

April 3rd, 2019

At breakfast with Christian and my friend Gail, yesterday, the conversation turned to memory, and what exactly memories are, and what they do for us, and what they mean to each person’s identity and how we think of ourselves: their weight, their influence…

We spoke of a common desire in this world to dig into the past, to search our childhoods for the trauma, for the pain, and also for those formative experiences that may still not sit easily within us, with which we may still not have made our peace.

Maussion, Charles; Head and Shoulders; Sainsbury Centre for Visual Arts, University of East Anglia; http://www.artuk.org/artworks/head-and-shoulders-1890

And Christian likened past experience and memory to a great tree with so many ramifications that it’s impossible to know where each is ultimately leading to, or emanated from, or how they all come together from a trunk and its roots…

And Gail, who is a Zen practitioner, smiled at that image and said that she had been reminded many a time that to look too long to the past is to get lost inside your head because, in truth, there is only ever the present moment, and though we carry with us imprinted memories of our own past, we can only every really BE HERE, NOW. There’s no going back, and the future is as intangible as space. She likened memory to the vapour trail we see tailing high flying airplanes, which is very thick where it first emerges, but which thins till it disappears off into nothingness.

Unpreservable.

At 60, I’ve stored enough memories to see the truth of both of those images, and to realise that by and large, I remember just enough to remain my continuous self, someone who walks in the world with a personal identity, i.e. I adore my children and grandchildren, I’m Canadian, a Montrealer; the people I love are…The foods I enjoy are…During this past year, I’ve moved to a new town, into a new home…I’m very sick…

But I also know, now more than ever, as I grow older, that the memories we hold onto with an iron grip are really the pain. We envelop those in such a tough, protective shell that sometimes they become virtually inaccessible to us, lost in lock down. It’s the memory of pain that seems to have the longest shelf life.

* * *

 

I’m just reaching the end of Philippe Lançon’s 2018 book, Le Lambeau (a word which means, in the book’s context, a flap of flesh). Lançon is a writer/journalist who survived the Charlie Hebdo massacre in Paris, January 7th, 2015. He was in the conference room at the moment of the attack and had the lower part of his face shot off, as well as sustaining damage to his arms. He was left disfigured, and suffered two years of hospitalisation, of treatments, surgery, more treatments, more reconstructive surgery, and still more treatments and pain…

It’s a gorgeous and profound five-hundred-plus page book, that covers the actual shooting very briefly, but lingers for a very long time on the life that came next. The survival. In French, the meaning is deeper, because to live is vivre, and to survive is survivre, words which, for Lançon, also refer to his two lives: the one before the attack, and the one after. Ma vie, et ma survie.

unknown artist; Les massacres de la guerre; The University of York; http://www.artuk.org/artworks/les-massacres-de-la-guerre-8914

What Lançon examines with fascination, precision, and disarming honesty, is how the man he was for more than fifty years, and the life he had, have become almost an afterthought in his new present. He isn’t so much describing a disconnect between his former life and his present “survival” as he is eloquently making a case for the former’s irrelevance.As I’ve read through his book, Lançon has taken me from the somewhat unconscious, automatic life that was his before January 7th, 2015, to one that was stripped down to the bareness of hospital rooms, pain, drugs, drool, drains, nurses, doctors, surgeries, opioids, fear and dependency.

And what struck me, all the way through his account, are the parallels that can be drawn between his experience and that of anyone who has suffered the violent or sudden shock of a life-threatening event, including war: a physical attack (as in Lançon’s case); a medical diagnosis that promises suffering and eventual death, or any unpredictable occurrence that moves a person’s life out of the public world of home, work and freedom of movement, into medical care and the enveloping necessity of hospitals and treatment.

In fact, I’m shocked that I not only feel empathy toward him (who wouldn’t? his tragic story is one of martyrdom), but that I also understand so many of his reactions, such as his progressive  withdrawal from the world outside (this is a writer and journalist who has lived and travelled in Romania, the Middle East, South and Central America, all over the world, in fact) which took the form of not reading the papers or watching television news; seeking refuge in music, mostly Bach…almost always Bach…for hours and hours; feeling the burden of having become a patient—the weight of that dependency; veins that seek only to escape the piercing needle; the alteration of the physical self and the mirror that returns such alien images; the desire to remain cocooned…

Philippe Lançon
Philippe Lançon

I think of myself, moving between our house and the CHUM, and how it’s becoming easier to feel comfortable in this new, smaller life of mine. I realize that I, too, have become reluctant to take on the news of the world at the rate I did before learning I have cancer. My desire to listen to music has not evaporated, but it’s often music of a certain type—all of Max Richter, for example—largely instrumental music that is expansive and elegiac, that fills up the whole house when I’m alone and which envelops me in the emotions that I feel and want to keep feeling but cannot always share with others; looking at myself in the mirror, the way Lançon did and certainly still must, and accepting anew, each time, that the person being reflected back is the one who is here, now, and that any other incarnation is gone—lost to the past.

For many of us, the sense of awareness of a “before life” and “after life” will only develop as a result of aging. Memories will be explored, evoking both a sense of loss, appreciation, and the sense of continuity. But for the many others, the acceptance of la vie and la survie, of two distinct lives created in a moment, and divided irrevocably, will mean leaving behind the unpreservable trail.

For many, first there was life, and then, survival.

Gerrard, Kaff; In the Twilight, in the Evening; Canterbury City Council Museums and Galleries; http://www.artuk.org/artworks/in-the-twilight-in-the-evening-75760

 

 

 

 

 

 

 

MOVING BETWEEN SERENITY AND SADNESS

Bennett, David; Slipway 1; ArtCare, Salisbury District Hospital; http://www.artuk.org/artworks/slipway-1-64745

March 23rd 2019

 Yesterday, I spent a part of the afternoon beginning the process of resigning from my position as a French teacher in adult education for the CSMB (Marguerite-Bourgeoys school board). The woman on the phone told me I should receive the papers in a week or so. The next step will be filling out the documents required to receive my small teacher’s pension. It’s very small because my professional life only got seriously started in my forties—though everything I did before that was leading me to that profession. I don’t qualify for my federal pension for five years…

It isn’t nearly enough. It’s a pittance that will help pay for food, and maybe the odd bill, but will mean being dependent on others, or else—and more realistically— running through what money I have left from my separation and the sale of our house—in effect leaving nothing behind for anyone.

It’s so startling (and ironic!) to think that there could come a day when I’ve outlived my ability to support myself, even in this group living arrangement that I have with my son and soon, our friend Cindy.  And even with cancer. I could find myself rooting for death rather than indigence, or, more honestly, being utterly dependent on my children, which is not an acceptable option.

Millet, Jean-Francois; Gust of Wind; Amgueddfa Cymru – National Museum Wales; http://www.artuk.org/artworks/gust-of-wind-116875

There are notes of melodrama there, because the people who love me would never see it that way and will probably feel like bonking me on the head when they read this, but…there’s truth here too. I can’t work for at least two years, and if I’m still alive at the end of the clinical trial, then Dr. Aubin, who leads this trial, told me point blank that she’s prepared right now to sign any document which states that I should never work again, because, well…I think she knows that magic rainbows aren’t awaiting me at the end of the two year trial, but she simply said –remembering that I’ll be 62 by then (using the future tense feels lovely) : “No, I don’t like the idea of you being submitted to the stresses of teaching,”  (which include driving all over the place) “I think you qualify for a disability pension, and I’ll sign a paper right now that states that you shouldn’t work anymore.”

My age is a factor in her decision-making process. She’s hopeful of extending my life and knows what could, and won’t, help me to reach that goal. And I probably shouldn’t write this, but I believe that when I walk into the small examination room she uses when she comes to the 14th floor of the CHUM, and we sit and talk and plan out the next treatment, she’s happy to see me, and has grown fond of me, in a professional way. I think she’s rooting for me.

I felt immediate relief, which was in part because she understood the demands of what I do. Did.

And also, because there’s so much struggle in my life right now that adding to it, even only on a list of possibilities, is too much to take in. But I still haven’t begun getting together the paperwork for a disability pension. The next step.

Schwarz, Hans; Lisa Dunwood, Teacher; Girton College, University of Cambridge; http://www.artuk.org/artworks/lisa-dunwood-teacher-195231

As I made the phone call yesterday, a workbook was sitting on this table where I write. A terrific book for learning French, published in Quebec (part of the Par Ici series), that I began using a few years ago when it first turned up. I can’t remember how it got there, but seeing it and leafing through it helped me fully appreciate the finality of never teaching again. I loved that book, despite its shortcomings (there are ALWAYS shortcomings: that’s what the teacher’s for). I love all the memories associated with it, the classes where my students were caught up in role play: one, the building superintendent and the other, the tenant with a broken kitchen faucet; or one, shopping for posh clothes being served by an obsequious sales person; or my beginners, struggling to ask questions about an Airbnb lodging they were looking to rent…

Just some of the things that have ended in my life.

It’s a long and precious list of roles I no longer play, responsibilities I no longer have, people I no longer see of whom I had grown very fond, teaching them once, twice, three times a week for 2, 3, 4 years… Ben, Armina, Peter, Christine, Arthur, Amira, Veli, all of my Filipino gentlemen…So many over the years that I cannot begin to name everyone…Day classes, evening classes…Many still Facebook friends.

And strangers I will never meet. Humans who might have been, but won’t be my students. I won’t have the chance to learn from them. A part of my future, which seemed so predetermined, now amputated.

I was so changed by my experience of teaching, which opened me up to myself and to others; which helped me feel so much better about the human race; which awakened me to the richness of otherness.

There are times, here in Hudson, when I feel myself shrinking. Losing confidence, losing my sense of purpose. The Incredible Shrinking Woman. No more Elastigirl. Leaving teaching was as far from my thoughts as would be leaving writing. I just assumed I would do both until…I couldn’t. Ah. There it is.

But I can still write (even though my eyes are bothering so much as a result of chemo that I’m forced to use reading glasses that are almost double my prescription (from +2.00 to + 3.75! and still, I don’t see clearly).

***

Over the past seven months, I’ve adapted to the routine of going to the new CHUM so often, and to the older Hotel-Dieu buildings too. I complain about the repetitiveness of it, and worse, the boxiness of it, but there are elements of these experiences that are almost ritual, and they’re soothing.

Getting Monday’s pre-chemo tests and examinations done quickly, and leaving the hospital early enough to make the 12:30 pm train home is the ultimate goal. It’s never more than half full, and it gets me on track (literally) to be home by roughly 2:15 pm.

The train is my principle mode of transport. Though I’m guaranteed free parking at the CHUM. I’ve never used my car to get there. Instead, I leave it where Simon teaches, in Sainte-Anne-de-Bellevue, at the train station.

The train at Montreal West Station, March 25th 2019

The train never failed me this winter. Not once. Not even during the worst snowstorm of the year. On the way in to the city, because my station is one of the first on the line, I’m lucky enough to get a good seat and settle in. But this is morning bustle time. People are off to work and to school. Most seem to carry with them a sense of mission. A purpose. Some are munching on their ersatz breakfast, while others, those with earbuds, have disappeared into their phones or tablets.

Returning home always feels different, but especially if it isn’t rush hour. The train is peaceful, and I love to ride the second floor—the quietest space. It creeks, and seems to rock more, left to right, at these times, in a gentle motion that soothes and settles everyone down. From my perch, I watch the strip of world that was carved out when the tracks were laid, some of them more than a century ago.

I watch Westmount and Montreal West roll past my window, showing ravines, a golf course, the ugly backsides of cheaply constructed and ramshackle garages and small grocery stores, and all of the big old gorgeous houses that passed for single-family dwellings back then, with attics and additions poking out unexpectedly.

On the train, during a snowstorm, February 2019

I love leaving Montreal’s edges behind, and reaching Lachine, Dorval, and the stations of my former home—three in all (the most!)— Pointe-Claire. They line the highway, and the houses have shrunk in size (the up-market homes are of course near the lake or in posher neighbourhoods).

But as we push westward, the cookie cutter suburbs begin to lose their geometry, and where no businesses and warehouses have yet been built, there’s still open fields, and finally, the farmlands of McGill’s MacDonald campus.

A few times, I’ve ridden the train right off the island, all the way to Vaudreuil, and once, Hudson itself (the train only stops in Hudson at 6:50 am and 6:40 pm), but they’re still working out the kinks in their system, so I’ve become partial to Sainte-Anne.

Riding the trains connects me with my past. It evokes the thrill of shopping trips downtown with my sisters or with friends when we were just thirteen or fourteen; and the years when I was a student at Concordia U, then McGill, and then finally l’Université du Québec à Montréal (UQAM), always preferring the train to anything else.

I hopped the train to go buy my wedding dress downtown. I hopped the train to attend Christian’s performances at FACE high school, and later, as a professional actor. I hopped the train to attend Simon and Jeremy’s graduations from Concordia (having become a biologist and an engineer), and later, Christian’s too…

On the train during a snowstorm, February 2019

These days, when I look out the window from the commuter train, I don’t have the sense that it might also take me to Toronto or New York, as it has in the past. I try not to see it as a means of going away or getting away, but try instead to appreciate how lovely it is to move back and forth between the places and people who are helping me to stay alive, through their love and care, making the serenity worth the sadness.

 

 

 

 

 

 

SECOND SKIN

“…the human being to lack that second skin we call egoism has not yet been born, it lasts much longer than the other one, that bleeds so readily.”
― José Saramago, Blindness

Robertson, Carol; Second Skin; Bodelwyddan Castle Trust; http://www.artuk.org/artworks/second-skin-178299

 

I’ve arrived at a place of discomfort.

Every day I’ve lived since last July has in some way been about me getting through the day, getting to tomorrow, and then the next day; and by extension, everyone around me has been caught up in helping me get through to a future beyond now, beyond this week, or this month, or year…

Making good meals for me when I’m useless (an all too frequent occurrence); shuffling schedules so that I’m not alone at chemo; remaining open and patient with me when my filters break down and I’m whimpery, and discouraged; adjusting their lives around my needs…These are just some of the things that my sons (especially), wonderful friends and family do for me every day.

How self-centred I have become.
Forced into it to some extent, perhaps, but indulging myself too.

And all of these words I’ve poured out to you—more than 35 000 so far—have they not principally been about me highlighting me?

Higgins, Tony; Skin Deep; University of Stirling; http://www.artuk.org/artworks/skin-deep-127895

While my own skin is showing the battle scars of cancer treatment, a second, invisible one is slowly enveloping me. It’s the skin of self-centredness. At least, this is an apprehension of mine that’s been there from the very beginning of this unchosen journey.

In part, I think, this withdrawal into myself is a survival mechanism. I’m not sure how much I can do. I’m not sure what will happen to me. I’m not sure what it means when I suddenly have no energy and my legs start to shake beneath me, or tears pour from my eyes as easily as I breathe. Self-absorption, my second skin, is in part controlling the flow of what life demands of me. But still… It has made it all too easy to hide away in the two-week (one in chemo, one off) life cycle that I live inside.

***

Last week was spring break for my grandchildren: Penelope, now 7, from grade school, and Graeme, who turns 5 in April, from pre-school. It was study week at John Abbott College, so Simon had more free time to enjoy (though he still had tests and lab reports to mark and things to write), and I was not in a chemo week. Jeremy  was away on business in Hong Kong and Japan, leaving behind an unfillable gap in his young family, in spite of the fact that Anne is an extraordinary life partner and mother. For Christian, unfortunately, it was business as usual: work –work—work—work.

This created an opening. They were home! Anne was happy to have company and support. And so, she and Simon busied themselves making plans to fill the days with activities the kids could look forward to.

Early in the week, we would go play with them all day at their house. Then, on a different day, we would take them to the movies. Next, they would come to our house in Hudson and play all day (from 8 am to 7 pm!). Finally, upon their papa’s return from Japan, we would go celebrate Penelope’s birthday over pizza at a local restaurant.

Our love for Penelope, Graeme and their parents is such that just being near them makes us feel happier. And yet, I see how I have pulled away from them since my diagnosis. Or maybe it’s truer to say that circumstances have made it hard to be with them the way I used to—circumstances which include my cancer and treatment, but also the simple fact that they are both at school and have busy, happy lives and a full calendar, which doesn’t always match up well with my physical highs and lows.

It’s been as though an invisible chord snapped when I learned how sick I was. They say that dogs can smell cancer in a person; I wondered if perhaps young children have a similar sensitivity to things that are going wrong. I didn’t want Penelope and Graeme to sense this…decay when they were around me, and I was feeling so changed and so damaged.

unknown artist; Old Lady with Two Children; Bradford Museums and Galleries; http://www.artuk.org/artworks/old-lady-with-two-children-22343

Last week, I played with my grandchildren with pure joy—something I  hadn’t done for weeks and weeks, because these experiences opened up a melancholy spot inside me: the whisperings of uselessness; of being superfluous and unable to follow the stream of their lives (while everyone else entered and exited their daily existence so effortlessly). I’m speaking of the loss of the kind of intimacy one can create with children that is tender and trusting and of such honesty that it replenishes the soul and reminds us of a different world—a minute by minute world—in which all good things are possible.

On the day they came to play at our house, for some weird and frustrating reason, I was exhausted and having trouble keeping my eyes open, almost from the time I woke up. It was as though magnets were pulling my eyelids shut. This has never happened to me before and all I could think of was going to take a short nap—maybe that would snap me out of it!? But Graeme was by my side, wanting to play and do all of the fun things that are possible here, and I would have been mortified to disappoint him, and so I reverted to closing my eyes for a few seconds at a time–taking the sneakiest, shortest micro-naps every chance I got. And at the end of one of them, there was Graeme, staring at me intently with the most accepting smile (given the circumstances), saying: “It’s okay, Grand-maman, it’s just your sickness.”

 ***

The love and well wishes that have rained down on me since last July, and especially because of this blog, have been a daily source of strength and inspiration for me. I cannot overstate this. Maybe it’s the magnitude of it that has alerted me to my unworthiness. It is love overwhelming. It is kindness and support beyond reason.

Thank you.

Thank you.

 My life depends on the willingness of my loved ones to do all of the thankless, repetitive and life-invading tasks that cancer throws in their path.

What can I do besides accept their love and attempt to return it to them in gratitude whenever I can, and understand that we are all called to love in every way possible?

Making amends…Making it up to them…

These turns of phrase that come to mind imply indebtedness. If their love has left me in debt, then I may not live long enough to repay each and every one of them.

Still, a way to lighten the weight of my second skin must surely be found in being kinder and more forgiving of every perceived wrong, no matter who it involves; being generous of heart and letting go of past slights and hurts; practicing more empathy every day, so as not to forget those dark moments that I am responsible for; and being more open to accepting love that I may never be able to return in equal measure.

It’s a wonderful feeling to owe one’s life to so many.

The Evening of all Days, the Day of all Evenings by Anselm Kiefer, 2014

TERMINAL

Not long ago, I was with a bunch of people I love. We were celebrating a birthday and it was smiles all-round.

One of the guests, who has been struggling with serious and rather frightening health issues, had just arrived, and mentioned the eternity it seemed to be taking to get the proper medical tests and procedures done here, in Quebec. I couldn’t help but say: “Well I’ve been so lucky at the CHUM and received such good care.”

And my interlocutor answered right back: “Yes, but you’re terminal.”

Phillips, Tom; Terminal Greys IV-VII; Arts Council Collection; http://www.artuk.org/artworks/terminal-greys-ivvii-63991

* * * *

I feel like I should leave a space on the page. It represents a pause. How time seemed to freeze just long enough for me to gasp silently.

Right up until that moment, I was feeling confident and upbeat. In social situations, it isn’t ever possible to make my cancer disappear. Time is required. People have to get used to me and my short white hair (but with blue eyes!), and ask their questions about how things are going in chemo (which I appreciate), and then, the cancer thing is allowed to go sit in a corner and take a break so conversation can move on—until someone calls it out again (sometimes that person is me).

TERMINAL. It was the first time that word has been used around me. And though it was spoken with not a micron of malice, still, it made me wobble, to have it thrown at me like that. It was like being splashed unexpectedly with black paint at super speed. I felt tainted. It reduced me to one of the doomed soldiers of the gaunt chemo army.

This all happened in a split second. I remember thinking, in a shaky inner voice: “But we’re ALL terminal.” (that’s the deal in this one life we have).

I haven’t heard the adjective used at the CHUM, or on my blog page where so many cancer sufferers and sympathizers come to leave comments.

* * * *

I’m  a word person. I think it’s the second time in my life that I’ve actually said this in a formal way. The first time was in a yoga weekend workshop, years ago, when we were asked to repeat a mantra over and over and I said to our instructor: “I’m a person of words, and I’d like to know what it is that I’m saying.”; and he answered with a “Pfff! A person of words” and a backhanded swipe at the air, meaning the sounds, the vibrations of Sanskrit are what matters, and understanding wasn’t necessary. That may be the day he lost me. Right at the beginning.

Language is my passion, my fascination, my friend. So, it isn’t a surprise that writing this blog has been such a hopeful, buoyant experience.

McDade, Steven; Language Flow; Southampton Solent University; http://www.artuk.org/artworks/language-flow-17287

Language has its own alchemy. It transforms words into love, understanding, fear, wisdom, confusion, suffering, compassion, anger, motivation…and hope. During my journey with cancer, it has been a universal elixir, allowing me to connect with people all over the world.

The oncologists and other members of the medical team (radiologists, chemo nurses, pivot nurses, pharmacists, psychologists…) with whom I’ve established such crucial relationships since last summer, have perfected the language of their trade, and the very best never falter.

Even the staging of my cancer was done with care and circumspection. Once “Stage 4” was determined, it was almost never used again in my presence. When I sit in front of one of the research team’s oncologists, every second Monday morning, the calendar is discussed—my chemo dates and upcoming blood tests and scans—but I don’t know that we’ve ever talked about finalities.

There’s a softness with language there. Those who work in oncology have learned to speak that way. They don’t say exactly when my chemo will end (there’s a certain, immutable number of cycles I must go through in this clinical trial, but some have been interrupted because of side effects and so I’ve lost track), but they carefully walk me through each one. They won’t say what treatment(s) will follow chemotherapy because they know to wait and see what will be required then…

Ivanisin, Katarina; Untitled; St George’s Hospital; http://www.artuk.org/artworks/untitled-87521

When you focus on NOW, you don’t need words like terminal and stage 4…but you do find yourself using the word chronic.

My hope is that when my chemo is done (which I think will bring me to next fall), I will have reached a terminal of a different kind, where I will hop the next treatment train that will, I hope, allow me to travel a good distance more. I don’t know how long my trip will be, and don’t expect my medical team to even attempt a guess.

This is, in fact, how most of us live every single day, travelling as best we can, though cancer patients may be the most grateful of all the passengers.

Wilgos, Brian; Back Again; National Railway Museum; http://www.artuk.org/artworks/back-again-9377

 

 

SUFFERING

Part of the THIS IS THE MOMENT series.

February 12th, 2019

Bomberg, David; English Woman; Ben Uri Gallery & Museum; http://www.artuk.org/artworks/english-woman-191301

Though it feels like I have to just hang in there through chemo, the fact is that I can’t and shouldn’t exist in some kind of holding pattern. I have to go and live as fully as I can.

This may be a peak. How I feel right now could be the best I’ll ever feel again…

I can’t say—I don’t know.

What I know is that there’s the possibility of so much more pain; of pain so pervasive that life narrows, and you enter a tunnel and for a while, it’s as though that tunnel has no end.

; Physiognomy Showing a Man Trying to Control Himself Under the Duress of Pain; Wellcome Collection; http://www.artuk.org/artworks/physiognomy-showing-a-man-trying-to-control-himself-under-the-duress-of-pain-239886

Someone I know, care about and identify with effortlessly, is suffering in this way right now. Or she was all day and night yesterday, when I could think of nothing else. I won’t name her. Her torment is as real as it is private.

The cause of her suffering is the cancer that has invaded her bones. Yesterday, she reached the point where her morphine no longer made a difference. I wasn’t with her, but I know that she is tough, and willful, and that her agony had to have been…unspeakable.

Knowing that someone is suffering the way she was, and has been for days, turned me inside out. Lying in my bed last night, I felt connected to her through invisible fibres that functioned like nerve endings.

Those who love her are all tethered to her pain, and every thought/prayer sent toward her also pulls on that part of the tether that is connected to us.

It reminds me: do not take a second of wellbeing for granted.

There is suffering everywhere—cancer, disease, are not its only claim—but this pain has a face, an identity known to me and everyone close to her; and that’s why it’s so easily sensed by all of us.

What can I do? What should any of us do?

Be mindful of that suffering. Don’t dare push it away when that connection is painful. Share it in spirit. Be present to it. Ache for the one suffering. Bear witness to it. Send love, send grace…

And then yell and howl publicly in proxy pain, till the palliative medical team gets it right. Till the loved one’s nerve endings quiet.

There IS a cessation to suffering. At the end of that tunnel is light and deliverance.

Atkinson, Conrad; Golden Landscape with Pain; The Wordsworth Trust; http://www.artuk.org/artworks/golden-landscape-with-pain-143028

 

THE WORLD, SHIVERS AND BOOKS

 

Part of the THIS IS THE MOMENT series.

1. OPEN TO THE WORLD

Sunday, February 3rd, 2019

It’s a cold Sunday morning and I’m sitting in what’s become “my spot”, that is, at the dining room table that looks out onto the back yard. It’s beside the sliding door, and I favour it because regularly enough, it’s here that a warm beam of sunlight enters the house, and for an hour or more, I have not only the light, but its rays upon me.

I’m able to spend lengthy stretches of time here. When Simon and Christian are off at work, it becomes a quiet, open space. There’s just me and my laptop, which, given the circumstances of my life, is the door that I can throw wide open to the world—despite the side effects of chemo I’m dealing with on any given day—and enter it, travelling as far as I wish, messaging, writing to or chatting in real time with the people I know and love, but also, thrillingly, with those I have met through my sickness and my blog, leaving my body behind. What would my view of life be like without this aperture?

(Oh! I’ve just been interrupted by the song of blue jays up in the pine trees in our yard and I even spotted one. It’s the first bird cries I’ve heard in months. They’re not the sweetest species, but on this cold winter afternoon, their vitality’s welcome!)

As the weeks and months have passed, I’ve never been more aware of the importance of this screened device that I type on and use relentlessly to connect with what otherwise lies outside my reach. Winter has also placed walls between me and the world as surely as my cancer treatment has.

Twenty years ago, I would have been dependent on the telephone, that very narrow channel of communication. I could have exchanged in real time, certainly (though I would doubtlessly have left innumerable messages—it was the heyday of answering machines), but along such a thin line of human contact. Banter mostly. Voices filled with attempted cheerfulness, worry, love, concern and the mundane news of everyday life that would have been my interlocutors’. But never seeing the faces that might have betrayed much more—a richness of pain and love.

On my laptop, I give and receive as lightly, as impulsively, as much as I choose or as much as I’m invited to offer. Internet is my means of travelling, and this year especially, it has taken me beyond what I thought possible. I think it’s saving me from the despair and depression that I might have fallen into.

Writing, especially, has come to my rescue. While I’m caught up in it, there is always an exchange happening between my thoughts, and you. Without you, writing would quickly lose its meaning. I’m sure of it. I’m not a diarist. I write pages that may or may not be read by you but are nevertheless meant for you…whoever you are. You were and always will be the people I know and love, and also someone I know less well but would like to know better. But I’ve also come to realize that you may be someone I just met on one of the myriad, tiny bridges of words built on my blog. I barely know you, and yet you have left behind words of appreciation and mostly, a piece of yourself.

My warm corner

2. SHIVERS

 Wednesday, February 6th, 2019

 Like so many chemo patients, I’m afflicted with shivers. They come and go in waves with a constancy that assures that they’re always a factor in my daily life.

It isn’t a coincidence that the sunny corner where I sit and write is directly in front of an electric heating panel. This is one way I’ve found to postpone the inevitable—at least from fall to spring. It’s as though any degree of cold in the ambient air finds me. It works its way into my feet despite the fact that I wear huge, thick socks bought at Chapters (the fuzzy knee-high ones) and l’Équipeur (the thermal ones).

This morning, I’m still in my soft pajamas and super-socks but, sensing this wouldn’t be enough, I’m also wearing a large, loose Carraigdonn 100% merino wool sweater, made in Ireland (I checked the label), that’s my mum’s. A previous chemo patient herself, she came to my rescue with it last fall, knowing it would be needed. I thank the sheep who contributed their miracle, all-weather wool to it. It’s like putting on a heated woollen tent (merci Maman xo).

Shivering reminds me that my body is under siege and that it’s having to expend energy fighting on many fronts at the same time, the chemo killing parts of me while all of my body’s systems kick in to repair, restore and remove the wreckage. It reminds me of my frailty and vulnerability; how quickly my battery loses its charge. It makes me feel old and compromised.

My shivering is a visible sign that my sons pick up quick as lightening, filling the den with blankets and covering me up while we watch Netflix together. Simon also mastered the use of the slow-combustion Napoleon stove that’s in the den (which is still allowed in Hudson), where with a wood fire only, he has succeeded several times in raising the room temperature to a thermonuclear 30 degrees Celsius. The irony is that once I’m under those blankets and all heated up, it’s almost impossible for me to get up and go to bed…such is the shock of re-entering other, cooler parts of the house.

But the shivers and my circumscribed life with chemo have allowed me to luxuriate in the most delicious and self-indulgent ritual: the late morning bath. You see, showering is rough. No matter how hot I set the water, or how warm the bathroom is when I enter it, I can barely bring myself to pull open the shower curtain and step out to face the wall of cooler air that greets me once I’m done.

But a bath…Ahhh…I fill it right to the overflow opening, lie down in the hot water and marinate till every calorie of available heat has migrated into my body. This ritual came about as a result of the 5FU infuser that I wear from Wednesday chemo to Friday afternoon. Bathing was one way that I managed to wash without getting the infuser or the port-a-cath in my upper chest wet. The fact that I was as warm as a foetus while bathing was a sweet discovery. Until now, I don’t think I had ever taken a late morning bath. Lying there, I’m reminded how alien my life has become; and then I try to savour every sensual moment of the experience. I’m sick. I’m in treatment. My present life is almost unrecognizable to me. And yet, to be in the very warm water—in a quiet, safe and peaceful space where I can close my eyes and simply breathe, or else let my mind wander and start writing things in my head, or face my own, private fears and truths—is a very fortunate oasis, but also an indication of my life’s contraction.

Detective and Mystery novels at home

BOOKS

When we first moved into this new house in Hudson, we—Simon, Christian and I—brought roughly a hundred “smallish” boxes of books, which we stored in the basement while we settled in. But the idea, The Plan, was always that we would turn the living room into a library—a dedicated reading room—and merge our collections.

It meant building ten or more floor to ceiling IKEA bookcases (Simon’s doing, with his friend Isabelle), and then systematically emptying every box, sorting through their contents and placing the books in some kind of order (we settled for detective and mystery in one corner and everything else—fiction and non-fiction—together, alphabetically, by author, along the main wall). Just days before Christmas, the shelves of our reading room were finally almost fully garnished.

Some of our books

It’s a beautiful room, and our favourite. It’s the room that we all imagined when we spoke of moving. With very few exceptions—one being all family photos and paintings, but especially photos of my grandchildren—books are our most beloved possessions. I’m not exaggerating when I say that books, in ways too numerous to count, have made us, and provided us with a third common language.

Since my “liberation” from normal life and work, I’ve caught up considerably in the reading department, mixing novels and non-fiction. Reading’s been a great consolation—or should I say compensation? But the shadow of chemo has reached this part of my life as well, as once again, good ol’ 5FU, the chemo drug that seems to have it in for me, is affecting my vision by drowning my eyes with defective tears, then drying them out and irritating my corneas, to the point where the headlights of cars at night appear to be coming at me like quasars, and even in daylight, everything I try to read (including this laptop screen) is blurry. And despite the assortment of drops I use, my vision seems to be getting worse.

Quasar

I won’t give up reading, even if I have to use a magnifying glass. Books are other worlds, other people, other voices, other’s dreams, other’s stories. Book are truth. Books are a shelter and an escape from our own pain, even if only by leading us into the suffering of others. Books are joy, and lightheartedness. They are wisdom. They are the repositories of billions of word bridges to each other.

Having time to read during my life in treatment gives me solace. I won’t give up books.

Not too long ago, as I was thinking of this piece and admiring the lovely library right here, next to where I write, I realized that there are still so many books on the white shelves that I haven’t read. Some come from Simon and Christian, but many are books I bought myself, after seeing a great review or wanting to read more of a writer I’ve just discovered and loved. So, I acquired them, and they are my trove. Our trove. I’m not sure how many they number in total, but there must certainly be fifty or more of them…perhaps as many as a hundred or more…

The question that struck me and that has haunted me since is: will I have time to read them all? Amongst all of the books at the library and those being published every day, those we have here represent such a small proportion. But it’s possible that I will leave many of them unread. Counting down my days in this way is dark, I know, and yet…and yet there’s also something immensely comforting and even subversive about measuring my lifespan by “books read”. As though I needed the motivation. [insert my smiling face here]

 

 

 

 

HOPE ON A PENDULUM

Murray, William Staite; Action and Inaction; York Museums Trust; http://www.artuk.org/artworks/action-and-inaction-8316

Part of the THIS IS THE MOMENT series. 

January 29th, 2019

I got my second scan results, once again, through my sister-in-law who is a radiologist. She received my email at the beginning of her vacation (she doesn’t—can’t—take nearly enough time off), and promised to let me know how things looked as soon as she got back. When she did, I received a very brief email stating that things were “stable”: no new lesions, no growth of existing tumours. STABLE. I immediately replied, asking if that meant that nothing had shrunk, she replied again: yes, stable.

After processing her words a bit longer, I felt myself sliding down into a gutter of sadness. Of hopelessness. It was so precipitous, it was almost like the sweeping downward movement of a rollercoaster.

Wadsworth, Edward Alexander; Souvenir of Fiumicino; Manchester Art Gallery; http://www.artuk.org/artworks/souvenir-of-fiumicino-206329

So much for my bravado. My morale is wobbly and vulnerable. My mind was filled with a frantic salad of thoughts such as:

– “Stable” means the drugs are (already!) no longer having the desired effect on the tumours/

– “Stable” means the beginning of the end, because if the tumours aren’t shrinking anymore, then the second we stop treatment, they’ll spread everywhere/

 – “Stable” means the cancer has adapted; when I got the first scan results that were so favourable, there was a brief period when I thought: “Maybe I’m one of those people who will be “cured”, against all odds, of their stage 4 cancer. But I’m not./

 – Maybe I’ll be dead in a year…perhaps two years…I won’t be part of the future.

I was hurtling down a steep incline, having lost sight of all of the answers to the question: What am I afraid of?

Like mountain climbing when, after a near catastrophic fall, you struggle back up to where you set your carabiner, and you see that you’ve moved well beyond chemo base camp, and that the stakes now feel even greater.

Hughes, Lynda; Light, Hope and Dancing; Victoria Centre; http://www.artuk.org/artworks/light-hope-and-dancing-64368

Then I thought to go online and just look at what the American Cancer Society has to say on the matter. I found what I was looking for under the heading “Managing Cancer as a Chronic Illness.  I read through the sections several times and each time, it was like pushing my mind’s refresh button. Each time, things were slightly altered.

I think that I’ve arrived at a crucial place: I must now accept that stage 4 cancer (barring a medical miracle) is chronic cancer—if you’re lucky. If it doesn’t spread like wildfire. A cancer that you can live with for a while (…to be determined). And living with chronic cancer means several things, including the fact that the life that you had before you were diagnosed is GONE. It will not be resurrected. GONE. Got that?

This was so from day one but I hadn’t yet understood and absorbed it.

Amongst all of the daydreams that sweep things back and forth in my mind was this notion that perhaps, if I was very, very lucky, perhaps one day this life I have right now would all be gone and in its place, my old life—the one that contained my work, my physical strength and stamina, my greater independence, my ability to travel, and the plans I shared with my sons about the future—would return. That I would have a life after cancer.

I know differently now, and should have sooner, except that, apparently, my mind relinquishes its patterns reluctantly, and holds onto its schemas the way very small children cling to their parents. I live and hope to keep living with cancer. That’s my new narrative.

Organ, Bryan; Pendulum Number 3; Leicestershire County Council Artworks Collection; http://www.artuk.org/artworks/pendulum-number-3-82559

Time is breaking down my resistances, and I can now see that I will be able to live with cancer for many months and, perhaps, years. This means a life lived close to hospitals, to medical care, to drugs and treatments. Regular medical intervention and supervision of my cancer and health, till I die. Freedom within those parameters.

This all coincided with bad news we received. Heartbreaking news, concerning a close member of our extended family; someone we haven’t known all that long but love deeply, who, at 53 years of age, has also been diagnosed with stage 4 cancer of a different type, but who had the news thrown at her in a manner I consider violent and without compassion.

These coinciding events—my scans and her scans—sent me reeling, creating such a mournful feeling in me.  I have lived seven more years than she. How can I not feel rent by this news?

It seems as though there will always be broken pieces to pick up and make room for in the mosaic of my life.

Yesterday, I was back at the CHUM for my routine pre-chemo tests, and spent a while with my oncologist, Dr. Aubin (whom I’ve mentioned before), who heads the clinical trial I’m participating in. I was waiting to see her before writing any of this to you.

Bentley, James; Helping Hands, Cancer Research Sponsored Walk, Buckley, 1st October 1994; Flintshire Museums Service; http://www.artuk.org/artworks/helping-hands-cancer-research-sponsored-walk-buckley-1st-october-1994-180360

She greeted me with a smile, and a cold, which she thinks she caught during her flight back from San Francisco where she and her team were presenting their work and findings so far. She was full of enthusiasm about the outlook of research in her field.

She examined me, and then we discussed my recent scan results, and when I mentioned that I was disappointed, she looked at me and said no, no, that she was very happy with the results; that the cancer is being controlled and that there was, in fact some modest shrinkage, and that all was well. That these sorts of fluctuations were to be expected. And she said it all with a broad smile, so I believed her, and told her that I have finally understood that my disease is chronic. That I know what this means. And she nodded, and smiled.

Before we parted, she said to me that working in oncology is a real challenge, but that patients like me made things much brighter.

It’s hard not to feel buoyed by such words, and so I shall try to knock some sense into myself and repeat to myself that the future is unwritten, and I shall try to narrow the swings of the pendulum to which my hope is tethered.

Lassen, Jeanette; The Road to Health; NHS Lothian (Edinburgh & Lothian Health Foundation); http://www.artuk.org/artworks/the-road-to-health-184508

 

 

 

 

 

 

AFTER THE LULL

Part of the THIS IS THE MOMENT series

The CHUM, yesterday

January 14th, 2019

I’m back at the CHUM today, after an almost month long hiatus from chemo. It was an unplanned winter break. It felt a little like playing hooky, like an unexpected escape, like getting away with something.

But clinical trials don’t let you off the hook for very long, and today, it’s back to a full dose of reality: pre-chemo blood tests, a visit with Dr. Aubin, the chief oncologist involved in this trial (a young, petite, brilliant woman who has been wonderful with me), and SURPRISE !, my second CT Scan (the study requires a scan every 8 weeks).

I didn’t know this was on today’s calendar. This serious return to reality is unwelcome.

I should feel optimistic; everything so far has indicated that my body’s response to my treatments is positive, but I would have liked to coast on that feeling a while longer. There’s a whisper inside my head cautioning me to prepare for the possibility of disappointment.

What would disappoint me? I have to think about that.

(I have lots of time to do so: 4 hours in fact, because it’s 10 am, I’m done with Dr. Aubin and my scan is scheduled at 2 pm)

—If my tumours have recovered and even grown, I will…I will…

I can’t complete that thought.

It belongs in the Do-not-go-there-until-you-have-to category. The place of the unwritten future. May it remain banished there.

The CHUM, yesterday

—If my tumours have shrunk a lot less than on the first scan?

Yes, this would definitely disappoint me, but it seems quite plausible, doesn’t it? My body has been adapting to the poisonous drugs invading it; surely the tumours are pursuing their own survival strategies?

When you have cancer, things get real very quickly.

The holiday is over.

But you know what? Almost 5 months into chemo, I’m not frightened the way I was before it started. I live more comfortably within my life’s new landscape. Forward momentum means very little to me now.

What’s just bubbled up from my memory are images—like footage—of all of those summers of my childhood, when we would pile into the car with a trunk full of suitcases, and a cooler full of food, and off we’d go, on vacation, usually eastward, spending hours and days in the car, my sisters and I seated in the back seat, sometimes with our grandmother; my parents in the front with one of their daughters wedged between them if grand-maman was aboard, watching cars whiz past us, in both directions of the Trans-Canada highway, and the scenery along with them. Whoosh! Whoosh!

That’s how my life has felt, for the last decade at least: me speeding through the days, and rarely in the driver’s seat, constantly monitoring the passage of time and feeling it running out…

Cancer brings the stillness of a dropped anchor.

January 15th

What struck me yesterday in Radiology was how sick people were. So many were rolled into the CT-Scan and MRI area in gurneys, that I lost count. One older man could barely stand, but still tried to avoid using the wheelchair provided for him to move about. He sat very still while having a catheter installed in his arm. He couldn’t speak, just the faintest whisper was possible for him, because there was some wound or incision in his neck. But every single one of his breaths was audible as he shuffled to the room he was called to.

I remember my first scans well. On that day last July, I was to have the first of my two diagnostic scans: the MRI and the CT-Scan—those that ultimately revealed the advanced stage of my cancer. I was still new to the stages of malignancy, to the CHUM, and to the hijacking of my life by a disease. On that summer day, waiting seated along that same wall where I found myself again just yesterday, with a good half-dozen other patients, I felt and looked like the newbie. I felt younger, and vibrant. I could still smile and act relaxed. But right next to me was a woman at the other end of the line. She made eye contact with me immediately and I could see how much she wanted to talk. She may have been only 5 or 6 years older than me but she was ancient by the standards of health. Her pale blue hospital robe—just like the ones the rest of us were wearing—accentuated her pallor and that unmistakable yellow-beige “chemo” complexion that’s so common to patients who’ve been battling cancer for a long time. Her hair was short and patchy and her eye lashes and brows were virtually gone. But she turned to me and smiled an exhausted smile, and though I’ve forgotten her exact words, I remember that she was three years into her battle to survive breast cancer that had travelled to her bones and was now in her brain. I remember that she touched the port-a-cath, that visible square bump under the skin of her upper-right chest—which is just like the one I now have implanted in me—and said: “This is what you want, it’s fantastic.” She was right. It is.

I’ve thought of her often. I wonder whether she’s still fighting to survive, five months later, or whether her body has reached the point of exhaustion. I think about her will to live, about her gentle smile, and about the distance between us and how much of it is delusion.  How many patients like her are there? Where does their strength and determination come from? Their willingness to be stripped of almost everything but their pulse?

Hawke, Marjorie; Probe; Royal Free Hospital; http://www.artuk.org/artworks/probe-123837

You enter the area, you walk into a small room and lock the door, because you have to get undressed. In an impressive, succinct combination of images, words, and alphabetical order, you follow the guidelines written out for you on a poster hanging on the wall.  Instructions A, E  and F pertained to my situation. When you leave that change room, you’ve left behind your distinctiveness, your spark, your colour, and most of your joy, because you’ve become indistinguishable from everyone else. The hierarchy of illnesses is almost invisible. Everyone is just a patient.

No one could stand this for very long. We all need the recognition and validation of others. We need to experience agency in our lives. We require the dignity that comes with being able to speak for ourselves, to be treated as individual, precious humans who also express themselves by means of their clothing, their demeanor and their social interaction. Sometimes, just the look in our eyes is enough. Some of us are positively heroic in our endurance of pain and our astonishing resolve. Some of us are sad, some angry, some terrified and some, all of the above.

Illness and injury reveal us to ourselves. And to our loved ones, I think.

Yesterday afternoon, I couldn’t wait for my CT Scan to be done. I lay there, on the mobile slab inside the big white ring that vibrates and hums and lights up, with my arms above my head and the catheter placed uncomfortably right where my left arm bends, and held and released my breath as prompted by a disembodied voice, and felt the hot, fluttery rush of iodine as it entered my bloodstream and quickly made it all the way to my bladder. And then it was over. My catheter was removed, I gathered my things, re-entered the change room and recreated the person I am by dressing and leaving Radiology, walking down the long, labyrinthine hallways of the CHUM, till I reached Champ-de-Mars metro station, blending in with everyone. Similar, but Me nonetheless—and free.

Croker, Michael; Milton Keynes Hospital at the Millennium; Milton Keynes Hospital NHS Foundation Trust (managed by MK Arts for Health); http://www.artuk.org/artworks/milton-keynes-hospital-at-the-millennium-27098