MY CAREFULLY CONSTRUCTED SELF

PART OF THE THIS IS THE MOMENT SERIES.

August 19th, 2019

I’m alone this morning. Christian now lives with Vickie, at her place in Verdun, and Simon is easing his way back to work at John Abbott College. That leaves me here, in a quiet house for a few days at least.

The sky is backlit that strange yellowy tint that is a harbinger of thunder showers. The smoke tree across the street looks like it’s glowing.

The smoke tree

I awoke at 3:30 this morning. It happens sometimes, usually when I’ve gone to bed early. It isn’t a problem unless it’s on one of the nights before I have to go to the CHUM. Then it can make me a bit anxious and worried that for some inexplicable reason I’ll sleep in and miss my train. Like tomorrow, when I have a CT-Scan scheduled, or something added to my usual alternating weeks of “peace and normalcy” vs “chemo” (which requires me to be at the CHUM two days, and then head to the clinic in Rigaud—a 15 minute drive from here—on the Friday, to be unplugged from my Fluorouracil (5 FU) infuser).

It’s become quite a grind.

When I woke up this morning, in the predawn hours, my thoughts went—as they’ve been doing for a few weeks now—to the reality that this Thursday, August 22nd, which is Christian’s 28th birthday, will also mark the 1st anniversary of my bi-weekly chemotherapy treatments. It’s a jarring juxtaposition to say the least, but it’s certainly easy to remember and, come to think of it, the fact that it will always evoke my lovely Christian is gentling.

Our human minds are set for patterns and cycles and chronologies, which are useful for making sense of the life teeming around us. We understand the need to become accustomed to beginnings and ends. And change. And the evolution and devolution of things (well, most of us do). And that’s why, inside my head, there’s an invisible wall with chalk marks like those the Count of Monte Cristo scratched out in the Château d’If.

Those marks, that counting of days, is of course one of the devices that helps me cope with my stage 4 cancer and its treatment. I was put on this uncompromising, hopeful, difficult, medicalized path last year. As you know, there was real serendipity involved in my being chosen for this research protocol/clinical trial.

I’m not sure what the tone of this missive to you will end up being. I’m not feeling sad. But I’m feeling one year wiser. There are so many things I know now that I didn’t then, despite watching both my parents and so many others go through cancer treatment.

That’s because there’s the visible journey, and there’s the inner journey.

How strange! As I sat writing these last sentences, a Mary Gaitskill quote from my We Croak feed just pinged on my phone. It states:

To be human is finally to be a loser, for we are fated to lose our carefully constructed sense of self, our physical strength, our health, our precious dignity, and finally our lives. A refusal to tolerate this reality is a refusal to tolerate life, and art based on the empowering message and positive image is just such a refusal.”

Farquharson, Joseph; When the West with Evening Glows; Manchester Art Gallery; http://www.artuk.org/artworks/when-the-west-with-evening-glows-204968

It’s a strange coincidence that places before my eyes a (partial) reformulation of what I’m trying to get at, just as I’m struggling to do it, and at the same time, brands me with weakness as a writer if I tip toward a positive message…

Well, Mary Gaitskill and I are looking through a similar lens this morning, though our predispositions and perspectives differ.

If I understand her correctly, Mary Gaitskill is saying that death is ever present; that to be alive is to live with the daily encroachment of the finality of death, in the form of constant, incremental loss.

Of course that’s true, but also, not the whole story.

During this past year, I’ve clung to the gift of a clinical drug trial because it WAS a gift. It lifted me out of utter hopelessness and the terrible, threatening inevitability of the painful progression of my disease. It helped me to see and feel something other than fear and grief. It offered reprieve. It lifted my eyes to a new horizon: much shorter,  and somehow hazy and impossible to visualize—or maybe that’s only because in all likelihood, it’s just another, less frightening path to an earlier death than I had imagined for my life. It sprinkled all of it with the tiniest amount of irrational hope—of the kind that allows a thin voice inside my head to whisper every now and then: Maybe you’ll win the cancer lottery and your tumours will just disappear or halt in their tracks.

I usually walk myself back from those thoughts, because though they’re necessary, they can also steer me too far from the here and now.

And that’s what this anniversary is really about. Negotiating the here and now. Every second of every day. Because I am aware of each passing second, or at least, more aware than most people, though I DO escape the tick-tock now and then and it is salutary (Mary Gaitskill be damned).

I  wake up in the morning with my eyes glued shut by a gel that does what my tear ducts can no longer do. I remove the gloves that cover my hands upon which I slather a balm every night, to slow down the deterioration of my skin and nails. I observe the latter, which look like they may be headed towards disappearing altogether, as my cuticles encroach on the nails, which are frail and sickly and cracked and beginning to separate from the nail bed, producing a u-shaped white area on the top part of each finger nail. I often wake up stiff and sore and stumble to the washroom like an octogenarian with bad hips and feet. I take two pills in the morning and then wait 30 minutes before I can have a cup of tea (otherwise I can get heartburn). Everything I do in the kitchen, from starting the coffee maker to buttering toast hurts my hands. My nose is coated with a thick layer of hardened snot because my mucus membranes are working overtime to protect my sinuses from the fate my hands and feet are succumbing to. When the snot fails, I have nosebleeds (which can be triggered simply by standing up). My feet, ankles and lower shins are weirdly painful, stiff and numb at the same time.  The inside of my mouth is red and hypersensitive (most of these issues are caused by the damage done by chemo to my epithelial cells).  Although my eyelashes have grown back (though they’re thinner), I no longer wear mascara because I have to put drops in my eyes every two hours or else they burn and I can’t open them in sunlight and my vision  gets wonky (again, epithelial issues—my corneas, in this case). No need to add mascara stains to that sexy mess. Last week, I was sick a whole day simply because my gut can’t handle food that has been in the fridge more than a few days (though everyone else enjoyed the chocolate sauce on their ice cream with no repercussions. Sigh). If I drink even an ounce of wine or beer, my hands burn (I still do, a wee bit, every now and then). My new shock of white hair is so soft it feels like petting a bunny rabbit. Last week, while with my grandchildren, I was on my knees assembling two one-hundred-piece puzzles and playing a round of Mouse Trap. Three days later, I noticed a very dark thick scab on the edge of my right knee. Confounded, I showed it to Simon who said: “You did that while kneeling down when you were playing with Penelope and Graeme!”. I’m not sure if I’m more upset that I didn’t even register the sore, or that it happened that way in the first place.

There’s more stuff like this. There’s the time spent going back and forth to the CHUM and to the pharmacy. There’s never knowing which days I’ll have lots of energy and which days I’ll feel frightened by my fragility.

It’s no longer possible to say mind-over-matter and push my body to work and go, go, go! Dinner out may or may not be pleasant; easily digesting it can be hit and miss. Just plain keeping up with the world is a gargantuan task for me. This is the cost of treating my cancer.

I cannot see the far horizon, or if I do, I am no longer in the frame. My children and their children are, though, and that gives meaning—profound meaning—to my here and now.

Gill, Madge; Patterns*; London Borough of Newham; http://www.artuk.org/artworks/patterns-249289

I had a difficult phone conversation today with someone very close to me. It required me, at the very end, to speak emotional truth that I knew the other person was not prepared to receive. It was very upsetting, stirring up old wounds, old traumas. But what has struck me since is that the pain of that conversation also traced a path directly to truth and to the cost of love.

This is the framework of my inner journey. What it feels like in here. Some days it’s tunnel-like, sometimes dark and cavernous. Other days, it’s like being lit up by fireflies at night. I feel electric and consciously alive in a way I had never previously experienced. That light is what life and love feel like. They illuminate our way. To the end.

Shackleton, Keith; Albatross Escort; Nature in Art; http://www.artuk.org/artworks/albatross-escort-62610

 

 

 

 

 

 

 

 

THE NEW NORMAL

Part of the THIS IS THE MOMENT series

August 6th, 2019

I was told last week about someone (to whom I have no direct tie) who has recently received a diagnosis of lung cancer. Those last two words usually make my heart drop, but she was told that her cancer appears to be localized—that it doesn’t seem to have spread. What good luck wrapped up in her misfortune! She was put on a protocol of chemotherapy that requires only that she take a pill a day, at home, for the rest of her life.

To me, this is the stuff that science-fiction is made of. My understanding is that she was told that her treatment should be sufficient to allow her to live for a long time. This seems like magic. May her medical team be correct!

Shackleton, William; Wings of Silence; Leamington Spa Art Gallery & Museum; http://www.artuk.org/artworks/wings-of-silence-54462

But then the person telling me this story said that she was having a terrible time. That the daily pill was making her sick, causing nausea and diarrhea. That she was depressed. Scared. Not managing. That she had said to one of her two children: This is the new normal, and I don’t know if I can bear it (or something very close to that).

The trusted person sharing this news with me wanted to know if I had any ideas about how to help her, because, though she lives here, in Montreal, her two grown daughters live out of province—one, thousands of miles away—and this mother of two is also divorced. She is alone a lot of the time, when she’s not at work.

The new normal. Three words that say so much. Three words that every human being who has received any kind of devastating news about their health (or, I would argue, about the health of a precious loved one) learns are both literally true and dismally euphemistic.

What this woman is trying to describe IS different than great upheavals such as being forced to move away from a place one considers home; or traumatic events such as a car accident, or the loss of a job…All of which can require tremendous adjustments and adaptation and cause immeasurable stress. But all of which leave their victims with a sense of still undefined horizons.

But this woman, this cancer patient, is referring to the feeling of having her existence hijacked overnight and waking up to a life in which she must face death every day. She’s lost sight of the horizon. Her goal is stark: to survive. The means to achieve it: to swallow every 24 hours a modern poison so strong, even death shuns it…at least for a while.

Osborne, Jeannine; Cage; University of Dundee Fine Art Collections; http://www.artuk.org/artworks/cage-91199

1 pill/day = life. This is the equation. These are the terms of survival.

If this is the new normal, then I don’t know if I can bear it.

Ross, William A.; Segregation Cell; Galleries of Justice; http://www.artuk.org/artworks/segregation-cell-46307

Of course, at first, upon hearing about her, as far as I was concerned, she’d won the cancer lottery: one pill a day, minimal hospital visits. But the truth is, every time she takes that pill, she thinks of cancer and of death. And, it seems, every time she takes a pill, it makes her feel sick. I imagine, too, that it makes her feel vulnerable, and frightened, and alienated from her own body. And that her sense of the future has begun melting away, leaving in front of her a sparse, barren-looking landscape.

In this way, she reminds me of another cancer patient, a beautiful New Zealander who has lived most of her adult life in Sweden, and who began writing to me when she stumbled upon THIS IS THE MOMENT online. She reached out to me—she chose to make contact. And all I think she really wanted from this, at first, was to hold a virtual hand. To feel less alone but also, to feel kinship. She was so brave to do this. She wrote (and her words have stayed with me—they’re part of me now): “I still don’t know how not to be afraid”. I believe that I loved her from that moment.

I want to tell the woman struggling with the abnormality of her new normal that one branch of medicine that oncology has made huge progress in is the management of side effects, and that there’s no reason for her to be feeling so sick all the time—and that she needs to insist upon finding a specialist who can help her manage these debilitating symptoms of poisoning (and not to discount the therapeutic effects of medical marijuana).

I was told that she is someone who has always taken care of everyone around her. I want to tell her that her new normal will have to include arrows of caring and helping that come from the outside and work their way towards her. That she has to love herself better.

And then, I want her to find a way to plant a garden. It can be filled with plants, flowers and trees. It can be filled with friends, neighbours and family members. It can be filled with acquaintances newly made through activities in her community. It can be vital energy that grows in her workplace and helps her to feel useful and…”normal”. But she needs to grow her life till the daily pill is an afterthought.

It isn’t time to dig a hole and shrink within it.

Ward, Martin Theodore; Two Fox Terriers in a Landscape; York Museums Trust; http://www.artuk.org/artworks/two-fox-terriers-in-a-landscape-8174

I’m fortunate. I have people to drag me out of that hole—one that even writing can open up around me. They bring me to my grandchildren, friends, family and they bring the latter to me—and I try to remind myself, afterwards, of the tingling feeling of human connection and love that I surfed on for hours and days afterwards—and remember, too, not to give in to reflex behaviours.

McLean, John; Catalan Blue; University of St Andrews; http://www.artuk.org/artworks/catalan-blue-125588

 

 

 

HUMAN BINDWEED

Part of the THIS IS THE MOMENT series.

July 21st, 2019

The office

This is the first post that I produce from the office in our house.

It took a full year of living here before I was able to muster the energy (mostly psychological I think) to clear the space—which had become the dumping ground for all of those I’m-still-not-sure-where-to-put-that-yet-so-let’s-stick-it-in-the-office objects—and make it a working, appealing place to write and spend hours of time (I’m so sorry Christian).

Well, it’s done.

Just in time. Ha! Tomorrow is my birthday. July 22nd. I’ll be 61 years old.

A decade ago, you would have mentioned that tomorrow I’d be 51, and I would have been as non-plussed as if you had told me that I would still have a nose or toes the next morning.

But this year, I’m finding the experience of my birthday peculiar. There’s the very obvious fact of my still being alive. Which is everything.

And maybe that’s it. Jeremy and Anne and the kids had us (a big chunk of the family) over for a birthday party for me last Saturday, the 13th, because this weekend, they knew they would be celebrating Anne’s parents’ 50th wedding anniversary. FIFTIETH!

Later today, we’re headed to my mum’s for a second birthday supper (she was at last week’s too), minus Jeremy’s gang. Finally, tomorrow after driving to see my grandchildren at their swimming lessons (yippee!), Simon and I will have some lunch and then go see a movie (Spiderman), because, well, it will be the actual day of my birthday, so more has to be done!

I was so happy last week at Jeremy’s, but also trying to find my bearings. And that same discomfort is making itself felt in anticipation of this afternoon’s program. I love all of the people who have sent me their wishes, who have invited me to their home, who have told me through cards and constant thoughts and actions that I am loved. Tomorrow, I anticipate lots of Facebook messages…

And yet, what I wish is that it all be wrapped up in one dense and compressed two-minute bundle of time. And be over with.

Turning 61 isn’t a shock to me—no matter the progress of my disease (there is NO progress at this time, as a matter of fact, and I can only be grateful every day and hope that this continues to be true for a very long while)—I did figure that I would be here this year. Everything ahead…that’s a different story. It’s all fiction, till it isn’t. That’s my narrative now, and maybe it should always have been so.

Bindweed

But this year, fêting July 22nd  feels excessive. Enough about me! It feels like for the past twelve months, from the moment of my diagnosis, too much of every day has been about me. I’m human bindweed; I have invaded the lives of everyone I love, messing up their schedules, clogging their plans and adding a heaviness to their lives…

I have been made invasive by this incursive disease called cancer. It isn’t my intention to leach into other people’s lives, but it is my effect. And the people I love, they’ve been so…not just tolerant, but gracious! Kind. Reliable beyond the call of duty. Joyful. Helpful. Indefatigable. Good natured. Sensitive. Compassionate. Perceptive. Irreplaceable. Constant.

Maple sapling

The best thing I could have done this July was give them all a break! But,  observing our garden, Simon and I are learning all about the persistence of weeds, and how they cling to other plants and to the soil—in order to live.

I would prefer to be one of the maple saplings sprouting up in the part of our property that we’ve decided to leave fallow, and that Simon and I are rooting for, imagining a future, maybe a decade or two away, when the tiny saplings will have become lush and beautiful trees that blush every fall.

The most I can do, now, is hope to watch the saplings grow, unencumbered by weeds.

Fallow land

BEYOND THE UNFILTERED NOISE OF THE WORLD

Part of the THIS IS THE MOMENT series.

Started June 17th 2019

 I was standing in the shower, a full ten months after beginning chemo, washing my hair and running my unreliable hands over the surface of my scalp, and what I felt was slippery curves and clumps of soft, slightly fuzzy hair that my shampoo-slick hands just glided over in a way that was completely foreign to anything I had every felt on my own head in the past, and I was reminded of the feeling of lambs’ wool, which was still often used to make the collars and cuffs of winter coats when I was a child—soft knots of newly grown warmth.

It was the manner in which the novelty and the foreignness of the experience coincided that instantly brought me to the fact of my cancer-grown white hair (though I’ve been colouring my whitening hair for years, it wasn’t THIS hair, which is what my body has produced under the influence of poisons shot through my system) : this baby soft, fragile, gradually thickening white hair and its inextricable connection to my cancer.

McNairn, Caroline; In a Foreign Country; Glasgow Museums; http://www.artuk.org/artworks/in-a-foreign-country-85286

Every time I step out of the shower and stare at the reflection in the mirror, I’m reminded of all of the losses of the past year; all the ways that I’ve become alien to myself. Of late, what I see and feel is premature aging, which may be a sensation common to many or all who deal with a chronic and debilitating illness. I just hadn’t ever considered it before.

I live like a person with cataracts even though what I have is irritated corneas and burning secretions from my eyes caused by chemo. I live like someone with arthritis, even though what I’m experiencing (this is a more recent symptom) is inflammation in my joints (thumbs, knees, right elbow, right hip, lower back) and muscle stiffness, probably caused by the immune therapy I’m so lucky to be receiving (this is written WITHOUT sarcasm). I live like someone in the very early stages of dementia, even though I’m actually struggling with what’s commonly known as “chemo brain”, which plays havoc with my ability to keep time straight and retain some sort of coherent relationship with the calendar, as well as remember things, people,  words and facts, that I once recalled effortlessly.

Reynolds, Alan; Sunset; Nottingham City Museums and Galleries; http://www.artuk.org/artworks/sunset-46873

Turning into someone who has become, in effect, an old woman overnight, is part of the small but daily humiliations that accompany the treatment of my cancer.

I’m being schooled by this ubiquitous disease called cancer, and by its treatment. In the early days after diagnosis, the sudden medicalization of my life gave my predicament a shape and an energy that propelled me forward. I lived by a calendar of interventions and chemo and appointments with various specialists  and scans—everything driven by an objective of…What was my objective? What was the medical team’s? I think that at first, I was just grasping at life. It was like being launched, with no warning, out of an airplane with a parachute for the first time, and hurtling towards earth, and hoping that the ground below would be flat and soft and safe—and that I wouldn’t end up broken and destroyed by the sharpness of trees or rocks or other unyielding things.

Wenzel Hablik, “Mont Blanc Sunset” (1906), oil on canvas, 96 x 96 cm (© Wenzel-Hablik-Stiftung, Itzehoe)

But somewhere in the past few months, it’s become clear to me that I now live in the company of death—with the awareness of death—almost every waking minute. This isn’t because of a morbid fascination that I have developed; it isn’t a symptom of depression or of giving up one iota of my desire to remain here, and LIVE.

It’s a side effect of my side effects, by which I mean: all of the injuries to my body caused by my treatment are the reminders that prevent me from any real escape and keep me tethered to cancer and mindful of it.

And, inexplicably, life seems to be conspiring to keep things this way. There was Rana’s recent death from cancer, which you know about. But there was also the death of Johane, a woman who was my neighbour for 38 years, who died of a debilitating disease last week. She was 62. And there is the illness (metastatic cancer), of a very close family member who is only 54, whose ongoing suffering is indescribably difficult for her and for everyone who loves her.

These have left me with depleted emotional energy and with diminished defences; these many  losses penetrating me so easily, and then staying, as though my cancer had activated an emotional magnet or dish, pulling in these harsh realities…

What is a life well lived?

How long is it? 62 years? 54? 50?

What is this force that keeps me in the room with mortality? Do these deaths lessen Death’s grip on the private me: the Michelle who lives here, in this consciousness…who is 5 and 12 and 25 and 45 and 60 and lives in all of the memories gathered, the experiences lived (and sometimes just survived) ; the Michelle who now works hard every day to construct a sense of reality in which I’m able to live and with which I’m able to make my peace?

I’m now much more affected by the pain and suffering of those around me.

My sensors are heightened.

Is this useful?

In what way can I put these insights to good use?

Should I indulge in the sadness that comes with feeling the pain of others?

I’m having difficulty distancing myself from it. How could it be otherwise? But I realize that sometimes, it is better to be compassionate and useful, than empathetic and edging close to despair.

Is it unhealthy?

Selfish?

What can come of it: a breaking down of the barrier between me and death?

The ability to live in the shadow of death or with death at arms’ reach and not feel fear?

There’s something happening to me. I’m more permeable. More absorbent. Everything in this life feels more real and more grounded. I’m not afraid of the emotions of others. I’m at ease with emotional intimacy. I want to be trusted and entrusted with the feelings and thoughts of others.

In this room, there’s no space for pretence or forced gaiety or hostility or careless behaviour.

I want to love and feel and reach out beyond the unfiltered noise of the world.

Zora J Murff, Untitled from Fade Like a Sigh

 

 

 

THE SHAPE OF TIME

Part of the THIS IS THE MOMENT series

  • My extraordinary friend Louise, who will turn seventy this summer, said to me (in French): “The thought of turning seventy, I’ve gotten used to, [it will happen in July] but then I think that the next milestone is eighty!” (she looks much younger and acts agelessly). I look at her and say: “Seventy sounds awfully good to me.” Ah. She realizes what she has just said. That’s how most of us live, isn’t it? Counting our decades before they’re hatched.
Field, Michele Elizabeth; Trees through the Seasons; Oxford University Hospitals NHS Trust; http://www.artuk.org/artworks/trees-through-the-seasons-43105
  • The list of my chemo side effects continues to develop insidiously. Lately, it’s eyes that tear and leak and burn almost all the time, causing dramatically reduced vision; joint pain all over the place. The other day, my right thumb felt like it had been sprained, and is still very sore; this happened as I walked in a parking lot, touching nothing (Ouch!). Instant injury. There’s my left knee, my right hip, my right elbow (preventing me from doing the cobra position in a sun salutation!); my lips are cracking and peeling; if I sit—the way I am now, to write—for any length of time, I can barely rise from the chair. Everything has become stiff and painful. I am the Tin Woman, like my partner in the land of Oz.

 

  • BUT (here is the loveliest of kickers): I have neuropathy in my hands and feet, which is why I’ve been taken off Oxaliplatin, as I’ve mentioned before. Probably temporarily. But what I love is what the doctors say. They say: Well, we’ll give you a good long break because otherwise the damage can become permanent.

I smile inside and out. A little, invisible balloon of hope rises from my fearful mind.  It could become permanent. You don’t say things like that to someone you know will likely be dead in 2-3 years…At least I don’t think you would. And that’s enough for me right now. They’ve given a new meaning to permanence.

Giovannetti, Luigi Pericle; March of Time I; York Museums Trust; http://www.artuk.org/artworks/march-of-time-i-8789
  • Last week, during one of the loveliest lunches I’ve ever had with my mum (who is 84), she says that of course, SHE DOES NOT WANT TO OUTLIVE ME (this is every parent’s nightmare—age has no bearing here). On the other hand, of course, as she is FULL of vitality and loves life, she wants lots more of it. I say to her that she looks just fantastic sitting across from me, and seems likely to be on track to reach well into her nineties. So we agree that we will try to leave this world as close together as possible, neither one having to live very long without the other. She seems satisfied with that. It’s a goal she can live with.
Day, Jean; Leaves, Four Seasons ; University College London Hospitals; http://www.artuk.org/artworks/leaves-four-seasons-124063
  • My son Christian and I are writing a Harlequin romance together. It was his idea, several years ago. It took us a while to get it on the rails. But oh, what fun we had thinking about it and planning it. It was an idea born well before we knew of my cancer. It was always meant to be serious fun: that is, something we would do for the joy of it, but with the wholehearted intention of having it published and earning income from it. We read some romance novels to prepare. Christian went to the Harlequin website to gather up all of their “How to” parameters. We’re more than half way in. It’s set in a place just like Hudson. It’s for real now. Not just pie-in-the-sky. We work so well together. I want to see this through to publication. I want it very much. And while he and I are busy making it happen, there is joy and lots of looking-forward-to. What I want most from this project is the doing, which keeps us close, and something more. Before I die, I want to know that Christian’s writing life is launched. I already know that he can turn out publishable books for the rest of his life—his writing voice is so distinctive, his mind a whirring generator of narrative (I don’t know how he keeps it all inside his head but that, apparently, is no problem at all)—but I want that to have begun. I want to see it and KNOW that he’s got his foot in the door..
The Cloud Man blew on our backyard trees last week (or perhaps he just kissed their tops? (Photo taken by me)
  • And then there’s Simon, and this multi-generational living project he conceived of, that took one hell of an unpredictable turn last summer when I was diagnosed just as we moved into our new home. His twin, Jeremy, lives happily in Beaconsfield with Anne, and Penelope and Graeme (we’re all goofy, over-the-top in love with them). Jeremy’s life is also enhanced by the ineffable bond he has with Simon, and by his love for Christian (and let us not forget that his mother and father also adore him). But Simon’s vision of the future included this house in Hudson, which is nothing to him if it isn’t a home.

I don’t want to die before our friend Cindy has come and converted part of the house into her studio apartment. This was always the plan. I know that time will allow Simon to create “family” in one of many possible reconfigurations that are meaningful and love-generating. But I don’t want to die before others are here with us. I don’t believe Simon is meant to live alone for any length of time whatsoever. I don’t imagine many identical twins are, but someone as gregarious as Simon? There are things I want to know,  that I want settled, and this one is important.

* * * *

Next month will mark our first anniversary here, in Hudson. This has been the year to topple all previous ones. I’m so glad that none of us is saddled with the gift of prescience.

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