HAZMAT HOME- Emotional side effects part2

November 29th, 2018

 I don’t know where to begin to describe the past 11 days. It’s been an epic encounter between chemo and the pathogens of the outside world.

It actually started when my sister Marie came to visit from Vancouver. Although this would be her 4th trip in a few months—to different continents and in very different time zones— the giant heart that beats inside her was committed to coming here, a week after her return from Chile (where she had worked very hard resettling her daughter, son-in-law and granddaughters into a new life there).

She wanted to accompany me to a chemo session, but found out only after her plane ticket was booked that I had had a week off because of a low blood count and scorched hands, and my treatment was now a week later than expected. “Fair enough”, she told me, “I’ll go with you to the appointments with the endocrinologist and to see your oncologist.” And that’s what we did, on the Tuesday.

Marie is a human generator, with energy that seems inexhaustible. It was so good to have her with me on that soggy, cold day when we headed into the city and went from appointments at one hospital, l’Hôtel-Dieu, to others at the CHUM, which is three metro stops away. We were gabbing so much that a couple of times, we found that we had set off in the wrong direction and had to backtrack.

At the pub, when all was still well.

It was the beginning of the week, and we knew that we had the luxury of many quieter days ahead to spend together. But as soon as our pace slowed, as soon as we settled in here, in the house, to talk and catch up, I noticed that Marie was speak-yawning, quite literally. There were all these things she wanted to say, but all her brain seemed to want her to do was yawn. And there were shivers too. She felt cold, she said (well, the house was cool, but Marie walks around in shorts in Vancouver on cold days and never seems bothered). It was as though her body no longer knew what time zone it was in.

The week passed, and then it was Saturday, two days to go before she headed home to the West Coast. We were having friends over because this was a scheduled IKEA-thon:  8 or more floor-to-ceiling bookcases had to be assembled so that we could finally get our cherished books out of cardboard boxes in the basement and up into the living room/library, where they would be close to us.

But, surprise, I never made it out of bed. I woke up sick as a dog, with what was either gastro-enteritis or food poisoning (my money’s on the latter: the thought of that smoked meat grilled cheese sandwich at the pub the night before still makes me feel green around the gills). I spent the day in bed, away from everyone: the fun, the voices, the laughter, the dinner, all of it. And thought non-food-related thoughts. And left my door open so I could listen in on the gregarious chatter.

But of course, a cancer patient is never really sure what’s going on inside their body, and I wondered if maybe something was going wrong with one of my medications. I was so relieved the next morning, a quiet Sunday, to wake up feeling shaky, but much better. Gastro or food poisoning it was!

And then I went to the den, to the giant sectional sofa Marie was camping out on, to see if she was up, and found her unable to speak, with full-on laryngitis, congested breathing, weak and sick as a dog, with a flight home to catch the next day.

Now it was her turn to be sequestered. Simon made that eminently, seriously clear. I was NOT to go near the den and Marie was NOT to leave the lower level she was on. This was to be my first true insight into my vulnerability as a chemo patient, and the havoc it can wreak. Simon wasn’t messing around. I HAD to stay away from whatever was making Marie sick, because as a chemo patient, I’m always immunosuppressed, and there’s no way to know how my body will manage to fight any virulent bug.

Marie slept all day, and recovered just enough, poor thing, to endure the slog to the airport the next day, the rental car return, and the 5-hour flight home (she seems to be doing fine these days). Meanwhile, Simon set to work sterilizing the den: each cushion, pillow, blanket and surface that Marie had touched, using a spray disinfectant and steam. I wasn’t even able to give Marie a hug before she left.

Simon, master disinfector

I suppose this should now be seen as the first test of our household’s HAZMAT response, because just four days after Marie’s departure, on Friday, Christian fell sick with an infection that mirrored Marie’s in many ways. He woke up so congested he struggled to speak and breath. His temperature hovered around 101 F. He was so weak he could barely get up. He was seriously ill.

Realizing what this could mean—his bedroom is next to mine and we share a bathroom—he contacted Lucie, my physician sister-in-law, who set off all of the alarm bells she could: this could be the flu; the flu could be lethal to me, his mother. I could wind up in intensive care. It could kill me. It would be best if Christian left the house. He was to have NO contact whatsoever with me. He was NOT to leave his room (except to use the bathroom across the hall which was now a contamination zone). He was to wear a mask any time food or water was brought to him. Anyone going near him (mostly just poor Simon the house biologist/parasitologist) was to wear a mask, gloves and maybe a lab coat too. Anything taken from Christian was to be washed and rewashed and the gloves were to be thrown out each time.

Simon on the attack

Friday, Christian’s temperature and symptoms were unchanged. Saturday, the same. Sunday, the same. He had soaked through his comforter, blankets, sheets, mattress cover. The minute he stopped taking Advil, his temperature shot up again. By Monday, the tension in the house was getting to me, and Simon’s hyper-vigilance was taking its toll: he was on edge and tired.

Aside from the microscopic parasites that were waging battle inside Christian’s body, I was the source of all of this anguish and anxiety and worry, and of the safety protocols worthy of the WHO (World Health Organization). It was me who was responsible for the tense, mobilized atmosphere in the house. Because of the chemo that has so compromised my ability to fight infection of any kind.

Christian was trapped in his room, isolated from civilization, because it was dangerous to me. And so, he has spent a week in there, watching TV, or online, or staring at the walls, alone, because of me. This is an intensely unwelcome side effect of chemo.

I’ve been feeling this way for days, now, and remembering a situation 6 years ago, when Simon, who lived in an apartment then, caught the super nasty H1N1 virus during Christmas vacation, and fell dramatically ill. I remember that the first thing he did was come home, to his parents’ house. I remember that we settled him in the living room, on the love seat, with blankets and a pillow and a TV table nearby on which we kept fresh tea and cold water, and monitored his temperature (there was one day when it stayed stuck at 104 F and scared us silly). And we were right there next to him, and we put on one DVD after another—many of which he slept through—and though he felt like death warmed over, he had us there.

Christian wound up going to the hospital with his father on Monday, where they waited and waited from 9 am to 10 pm. What is known, at this moment, is that flu (influenza) has been ruled out, and so has pneumonia. This is good news to both Christian and me. Blood was drawn for cultures to be done, and Christian should find out today if it’s a virus or some bacteria raising hell…

Dickson, Rodney; Sickness; Atkinson Art Gallery Collection; http://www.artuk.org/artworks/sickness-66470

I’ve found this past week excruciating. Having us separated from Christian, with all three of us stalking around masked and gloved…It scared me. Illness reared its unwelcome head three times in less than a fortnight, and turned us all into hyper-alert germ fanatics. And the terrible thing is that it was necessary, and that it was on me. I am the antithesis of Typhoid Mary.

I don’t know that I’ve ever felt so disempowered and helpless to do anything to help my own sons. While he was at the hospital on Monday, Christian’s phone battery started to die, so he had to reduce contact to the weakest trickle. The lack of contact was painful to me. Like a connection between us was being stretched beyond bearing. I felt impotent. Useless. And like a giant pain-in-the-ass sickly obstruction.

I have to accept that during periods of contagion at least, I cannot be a mother, nor a caregiver.

Right now, I’m dealing with a bad case of emotional side-effects.

Cairns, Joyce W.; The Wounded Heart; Glasgow Museums; http://www.artuk.org/artworks/the-wounded-heart-83450

 

 

 

 

 

 

 

 

 

 

 

 

 

EMOTIONAL SIDE EFFECTS

November 25th, 2018

 My understanding of what it means to sign on to a cancer research protocol is becoming clearer with every passing week. My nose is no longer glued to the window of treatments in the same way. I’m acculturating.

If I’ve understood correctly, the aim of the team of specialists who are shaping my life is to keep me in the full chemo protocol for a year, and then continue a second year just with Nivolumab, the immunotherapy drug.

Five weeks ago, I would have flinched at hearing this: only the first part would have registered. A YEAR of chemo? What human body can take that much abuse?

And then the first scan results came in, and I now know, for certain, that at least all of this isn’t in vain, and that modern science and my body have linked up and are giving me a fighting chance to stay alive a while longer. A GOOD while longer, is what I’m hoping and feeling.

Cast in this light, I think I can put up with whatever new side effects present themselves. Well…maybe that’s a bit too confident, but I do feel a renewed love of this carcass of mine, this sixty year-old body that has been asked to ascend the heights of Mordor. I’m so grateful for what it has accomplishing with the help of state-of-the-art medicine.

Rereading these paragraphs, I see how much Me-Me-My-I is in them, and it’s unsettling. Just a few days ago, I finished Nina Riggs’ The Bright Hour: A Memoir of Living and Dying. It’s a compelling, difficult book because Riggs wrote it while she was dying of metastatic breast cancer that spread to her bones and lungs over a period of two years. She barely reached the age of forty, and left behind two preadolescent sons.

I will not forget Nina Riggs, nor her challenging ordeal (her martyrdom, really): the early false hope, the rapid spread of her disease that became unstoppable, the painful treatments and myriad side effects she dealt with so courageously, so…adamantly. The last year of her life was a torment, and yet she held on.  I don’t know exactly what drove her to dig so deep, but I suspect that it was her inability to accept leaving her children, whose lives and cares she shares in the book.

Her story presented me with one of the many scenarios that might await me, or any of us really, except that I’m right at the portal—the entrance to the place where the end is. I think Nina Riggs hung on as long as there seemed to be a path to follow: a new drug, a different protocol, a new surgery, a better pain killer. Until these and her tortured body were exhausted.

Nina Riggs

Whatever awaits me, I’m in this new life for 2 years. That’s what I signed for. It isn’t a comfortable feeling, but there’s something reassuring about knowing that a whole medical team is committed to me and to treating my cancer for such a significant period.

And so it is that I’m tied to two-week cycles in a two-year experiment. Minus one eighth, because I’m now three months in. It’s all very rational, very professional.

But within this structure is a simple patient: me. And while the physicians go about their business at the CHUM, wearing white coats and monitoring my case on their computers, I only live in their world for very short spurts: one day for tests and seeing the doctors, and one day for chemo, with extra days for tests as new side effects manifest themselves.

Most of this research protocol, this medical study, I carry home with me. It’s lived with friends, family, acquaintances and strangers. And my life is largely devoted to finding ways to make it all fit together, and to overcome my sense of uselessness and incapacity.

The truth is, I can’t do what I was able to do just 4 short months ago. Before chemo began, I imagined a life regularly chopped up into a few bad days and a bunch of good days—normal days—when I would be able to do pretty much anything I wanted. But that isn’t the way it is. There’s no more normal. There’s just managing change.

I no longer have the energy to go from place to place teaching adults. That life feels so far away. I can’t depend on my legs to feel strong under me. They’ve lost their bounce and these days, I’m just happy that they can get me to where I want to go.

I’ve told you about my hands and feet, which are fragile things now, with skin that burns in some places, is numb and thick in others or peeling off in strips. Opening a bottle of Tylenol, opening a jar of jam, putting on socks, holding a cup, using a chopping knife…All of these hurt, and are not always possible. So I ask for help.

My eyes are experiencing changes and there are times when, well into a great book, they simply won’t focus and instead start leaking, and I have to stop. My reading glasses are always cloudy, which makes me wonder whether the eye goop is continually splashing somehow onto my lenses.  My gums burn when I chew gum and when I use toothpaste. My lips burn when I drink hot fluids. The inside of my mouth seems to always be coated with dead cells that make my mouth feel a bit like it’s lined with tapioca. My super dry nasal passages are permanently coated with bloody clumps of mucus that are sensitive and make my sinuses ache when I breathe, usually just when I’m trying to fall asleep. I pulled a square one-inch patch of thick white skin off the bottom of my foot yesterday, which came off like wax. No pain, and the skin beneath ready to take over. The undersides of my feet are a bruised red (where they aren’t snow white). The rims around my toenails are chocolate brown.

Pearce, Rodney; Mother Figure; Cheltenham Art Gallery & Museum; http://www.artuk.org/artworks/mother-figure-61968

When the thermometer plunges, being outside triggers not only neuropathic pins and needles in my feet and hands, it also causes small spasms under any skin that’s exposed to the cold and wind, such as the tissue around my eyes, or else my cheeks or my chin, and I feel as though I’m grimacing, even if no one seems to notice. It forces me to bundle up like a fragile old woman.

Side effects of chemo. All of them. They’re predictable and monitored by the oncologists and nurses and usually, they can be alleviated enough that my “quality of life” (this is their great preoccupation) isn’t too negatively affected.

But what of the other side effects? There are so many parts of their chemo experience that patients keep to themselves—the interpersonal, intimate side effects that are also borne by the people they love. Sometimes, physical and emotional side effects become entangled.

For example, as the weeks of chemo have added up, Christian has taken to coming to my room now and then at bedtime, once we’ve both washed up and have put on our pajamas. The first few times, he asked me if I minded (of course I didn’t), and after that, he just text messaged from his room: “Can I come over?”.  All he does is lie down on the bed beside me—I’m usually propped up and reading—and snuggles. Me and my 27-year-old baby.

Dewan, Indra; Mother and Child; Art & Heritage Collections, Robert Gordon University; http://www.artuk.org/artworks/mother-and-child-105357

There are times when we’ll just lie there quietly, our foreheads touching. Mostly though, we’ll talk about anything and everything but sometimes about small, meaningful things, like the fact that for most of his life, the thought of losing me was his worst nightmare (now that he has wonderful Vickie, those thoughts are waning). A simple phrase, but one that conjures the pain my illness is causing him. Or, on another evening, he told me how difficult it was when he first had the thought that I might not be the grandmother his children know.

There’s a special kind of awfulness to those kinds of thoughts spoken aloud when you’re in chemo. They hurt in an acute, specific way. They’re words that you can’t step out of the way of, they always hit, and that’s because their intention is sincere, and the bullseye is love. The thing is, I can’t always hide my reaction, and so, when I cry, my face scrunches up in a particularly ugly way because crying hurts my face since I’m in chemo. But what can I do? I cry. Then it passes.

McCall, Charles James; Pensive Woman; York Museums Trust; http://www.artuk.org/artworks/pensive-woman-8323

I worry too about Simon, and what will happen if I die too soon, before he’s ready to handle all of the expenses of our new home. I think about him alone in this big place. I mentioned this once, and he told me that he had friends—a couple I know—who would perhaps share in a new multi-family configuration. Reassuring words. But awful words too, because they told me that his mind has had to go there more than once since my diagnosis, to the future place where I no longer live.

All of the thoughts and worries and practicalities that my sons are dealing with, and the responsibility I bear for them…No one told me about side effects like these.

 

ONCE, THE HIDING

Part of the THIS IS THE MOMENT SERIES

November 22nd, 2018

 First, the very good news.

The results from the Cat-Scans came in last Thursday. My sister-in-law Lucie, who is a radiologist and who therefore has access to such information through a medical online network, quickly sent me a rather jolting email; in fact, only a title which read: Appelle-moi. Call me.

It scared me. It was so bare bones that I thought she didn’t know how to broach bad news. I could have spent a terrible stretch frozen in worry, wondering how bad it could be, but it seems that I’ve moved into a more direct, head-on way of living. I picked up my cell and dialed, come what may.

She answered immediately, a minor miracle, as she almost single-handedly holds down the fort in the remote hospital where she is chief radiologist. There was professionalism in her voice, but also a special energy that drove her to speak as fast as she could.

Her first words were that my body is having a FAVOURABLE REACTION to the chemo protocol. She’s so intense: you could tell that she just loved saying it. This is a real medical expression that is determinant in oncology. It means that for whatever reason: extraordinary health care, being very lucky, being offered continuous, exponential love and support, THE TREATMENT IS WORKING! My body is collaborating, and in just 2 and a half months, the larger tumour in my lungs—there are many tiny ones sprinkled throughout them, but this one had the oncologists wondering if it might be actual lung cancer and not metastatic colorectal tissue, because it measured over 6 cm—has shrunk 30%, with the rest of the cancerous tissue doing the same thing. No one has yet seen the abdominal scans (except the liver, which now shows the same results and where there’s only a tiny speck of a tumour), but everyone expects to see exactly the same thing in my bowels because the cells being hit are all of the same type.

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

So, on Tuesday, I got to travel to the CHUM and meet with the head of the research study, Dr. Francine Aubin, and smile. She smiled a lot too. She’s very happy. And she made me understand that this was a terrific result and that she believes that the Nivolumab—the new immune therapy drug—is at work here; has kicked in.

How does one deal with such a mixture of…relief, joy, disbelief; a gut feeling that this was expected (simply based on the disappearance of my most obvious cancer symptoms); a guilty feeling that this is undeserved, and creeping superstition about saying anything at all about it? I wrestled with this. Should I share the news? What if it changes…what if they discover something that casts a pall over this wonderful morale boost?

But that lasted about 2 minutes and then the thought of being able to tell my sons, my mum (who deserves to hear something happy and reassuring), my sisters, my husband, my friends…it overrode everything else. It felt wonderful to have some lightness and joy to share. Even if it’s just the beginning and even if I have no idea how long my body will continue to cooperate and ally itself with the drugs being pumped into me.

There’s magical thinking, and then there’s disturbing conditioning, and I’ve been giving a lot of thought to the latter; about the many ways it’s coloured my life. It’s been with me since my diagnosis, which evoked memories of my parents.

Dyson, Julian; Self Portrait, after Being Diagnosed with Throat Cancer; Falmouth Art Gallery; http://www.artuk.org/artworks/self-portrait-after-being-diagnosed-with-throat-cancer-14642

When my dad was diagnosed with lung cancer in late 1987 or very early 1988, I wasn’t quite 30. It was awful news that was especially difficult because of our (my two sisters and I) strained and wounded relationship with him. The making of those scars won’t be told in this narrative, but with the distance of three decades, I realize that my father suffered from cardio-vascular disease, anxiety-depression and a good measure of obsessive-compulsive disorder that, combined with childhood trauma and something in his brain that could trigger explosive anger, were beyond his and my mother’s capacity to manage, at a time when the medical community had a fraction of the understanding of such things compared to today, and too few tools to deal with most of them. Which meant that my father was left largely untreated, and we, his three daughters, exposed to all of it.

My mother coped by covering most things up. Hiding what was happening in our house from the neighbours and her own parents and siblings. As much as she could, at least. For as long as she could. And so, when the cancer was diagnosed, she did what she knew best: she forbade us from telling anyone that our dad had lung cancer. She swore us to secrecy, until she felt the time had come to share the truth.

I remember feeling immediately that this was the wrong thing to do. My sisters did too. It was like being asked to swallow a bomb and carry it around in your belly for as long as you were made to. It was a dark and sad burden to internalize. It was maintaining the theatre of a life that had just been shattered. It was hiding anguish and pain. It was disorienting. It was anathema to us.

Haughton, Benjamin; In Hiding; Merthyr Tydfil Leisure Trust; http://www.artuk.org/artworks/in-hiding-153488

I don’t remember when the interdiction was lifted, or how people came to know…which is strange. I suppose once my dad started chemo, there was no more hiding it. He tried to keep going to work once his chemo started, but soon found that it was impossible (I understand this so clearly now: his stoicism was extraordinary). Because this was 1988 and the cancer was already in my dad’s pleura (the pair of membranes lining the thorax and enveloping the lungs), it seemed clear that his chances of living even 5 more years were bleak. And so, slowly, the world was allowed to know of his suffering and also of his need for love and kindness and support and companionship.

This opened the door to months of a different way of living and dying for my dad, who quickly hatched a plan with his baby brother Leo (my dad was the 7th of 9 children and Leo was the tail-ender) to have an extension—a sunroom—built on the side of the small house my sisters and I had grown up in, and then together add a wooden deck onto the back of that.

These projects, which my dad had to supervise at first, and then get right into, brought a wave of joy back into his life. Watching him with his leather tool belt hanging from his hip, side by side with Leo, through the spring, summer and early fall months, it was almost possible to forget how sick he was, and lovely to observe how poignant this dedication to the act of building was.

Rogers, Michelle; Maquette of ‘Out of the Shadows’; Queen’s University, Belfast; http://www.artuk.org/artworks/maquette-of-out-of-the-shadows-168887

On May 24th, 1989, two years after his diagnosis and six days after my twins’ sixth birthday, which we celebrated together at St-Hubert BBQ and which he attended, my father died. It was very early morning, and he died at home, my mother by his side. It was the gentlest of exits for such a lion of a man, who was as slight and fragile as a bird on his last day.

My mother had lost her life partner and first love. There was all of that grief and sadness and abrupt emptiness; and the unearthing of memories and reliving of them to do, in their house, which was, for a long while after, still so suffused with his presence. And of course, there were all those hard months at the end, the months of beginning to let go, when they must have talked.

For reasons that we’ve never understood, my father chose to leave his daughters nothing. Not one of his beloved books, in which he might have written a dedication, not a written note, not a private conversation to stow away in our memories…nothing. He simply left.

I look back thirty years, and know that my father will remain a mystery to me.

I have always resisted the hiding and the opaqueness that smothered our childhoods. But recently, I came across poet David Whyte’s newest work, Consolations—The Solace, Nourishment and Underlying meaning of Everyday Words, in which he describes hiding as a way of staying alive, of holding ourselves together until we’re ready to come into the light.

Though Whyte’s insights help soften the feelings and attitude I have about those years lived under my parents’ roof, my appreciation of the value of sharing and opening up to others, and trusting in them, is the path I’ve chosen. The hiding is over.

unknown artist; Quiet Light; Wonford House Hospital; http://www.artuk.org/artworks/quiet-light-96532

 

 

 

 

 

 

 

WHAT AM I AFRAID OF?

Stout, Jennifer; Untitled; University of Dundee, Duncan of Jordanstone College Collection; http://www.artuk.org/artworks/untitled-108170

October 31st, 2018

Part of the THIS IS THE MOMENT series.

In my lifetime, a lot of what I’ve thought about is fabricated within the trap my mind has set for me by keeping me preoccupied with the future. I wonder if I haven’t spent at least a quarter of my life planning for the future, thinking of what would be, what might be… Worrying about what my children’s lives will be like (they are grown men of 27 and 35, for heaven’s sake) what will happen to them, and their children (with climate change and everything going on in the world, it’s hard to zig and zag away from those worries).

Until 2017-2018, there was also what would happen to me in teaching, as the school board went through endless personnel restructuring; how I would manage to hold onto my job and  do everything I wanted to do: teach, write, be a loving mother, daughter, wife, friend and grand-maman;, take care of my body and health; how I would fit it all in as I age, in spite of the cumulative fatigue and significant stress…How well I would live that “second life” (a life after life) promised to so many women who are mothers…

Peart, Tony; Fear of the Unknown; Darlington Borough Art Collection; http://www.artuk.org/artworks/fear-of-the-unknown-44103

Would I be able to keep living with my husband? Would I ever find a way to redress the mistakes of my past that brought me to the place where I was: a mixture of daily passion, joy, love, buried sadness and marital stress…

When would my health begin to fail? (well, it was already failing, wasn’t it?). Would I be afflicted with breast cancer like my mum? Heart disease or lung cancer like my dad? Alzheimer’s? (I honestly never thought about a violent death)

How would I reconcile the different parts of me that pulled in different directions: the teacher, the emerging writer, the mother, the friend, the daughter, the disillusioned spouse, the person as yet undiscovered (because I feel that too—none of us ever stops changing and becoming)?

Aarrestad, Katharine; ‘This is the end of you’; Aberdeen Art Gallery & Museums; http://www.artuk.org/artworks/this-is-the-end-of-you-106556

Would there ever come a time when I got my life exactly right, that is, when I became the best person I could be—the very best version of Michelle, who got all her shit together and arrived at the end of her life having worked through most of the distractions and mistakes and simply become a genuine, good person?

(The worry generator in your own mind undoubtedly produces similar thoughts, like small, irksome movies that eat away at your serenity.)

And then there was my cancer diagnosis, that peeled away everything extraneous, and focused an intense beam. It brought all of my fears right in front of me, reducing my field of vision. What have been my worries since July? Not the big, broad strokes on the canvas. It’s the details of my life that are preoccupying. I have become myopic.

Brown, Neil Dallas; Shroud; Glasgow Museums; http://www.artuk.org/artworks/shroud-83397

What’s chemo doing to my body? What is this change in the pigmentation of my skin? Is it dangerous? Permanent? Can a person develop melanoma while undergoing immune therapy and chemo? Are these changes to my body—its premature aging—reversible? Will my body recover its strength and musculature? How long will it take for my hair to grow in and for my body to return to its “normal”, familiar appearance?

And what about after chemo? Will there be radiation? Will every lesion in my body be hunted down relentlessly? Will there be surgeries? How many? What if the metastases make a spectacular resurgence? How much time will I have after this first wave of treatment ends before cancer returns? How many years like this year can I endure? How strong am I? What if cancer goes to my brain? How long will I accept to live with that before I choose release? What if it migrates surreptitiously to my bones? To my pancreas? (these are among the worse-case scenarios because they’re the most painful)

Deacy, Brendon; Stolen Woman; Wolverhampton Arts and Heritage; http://www.artuk.org/artworks/stolen-woman-19504

What if I can never teach again? Do I want to teach again? What if I run out of money? What if, what if, what if…There seems to be no limit to the apprehension my brain can manufacture.

So many waves of angst that could just keep rolling over me, drowning out everything else. Which they did for a while.

But something has happened. It rose out of my life and almost completely snuffed out the fear that I was stoking and that swirled around me. It emerged out of a thousand threads: from the thoughts, messages, prayers, benevolent intentions and wishes, warmth and LOVE of the dozens, perhaps hundreds of people who have hugged me, messaged me, called me, visited me and rooted for me since my diagnosis; from the impeccable, humane, professional and all-encompassing care I’ve received at the CHUM; from the radical transformation of my life which brought me to this peaceful house in this quiet town that is encircled by nature; from the tranquility I find here, which allows me to simply exist in moment after stressless moment; to the resolution of the sadness and pain of my marriage through separation; to the gift of TIME, which was foist upon me by the exigencies of chemo, and created large spaces of forced idleness that I filled by writing, napping, reading, thinking, listening to music alone, and watching television all curled up in a blanket…I know I’m repeating myself here, but it stills feels unreal to me.

Uhlman, Fred; My House in Wales; University of Warwick; http://www.artuk.org/artworks/my-house-in-wales-55850

The truth is, I’ve never been so stress-free. Imagine that. It makes no sense, but the fact remains that since I’ve learned that I have metastatic cancer, I’ve moved closer and closer to a place of calm and peace. Maybe that’s because these past three months have not only pulled me out, by the roots, of my previous life and patterns, but have also stripped away all of the weeds and strangling things in my life, placing me squarely before the starkest possible truth: that I am mortal, that I WILL die, that I have NOW, and that my future is unwritten. NO ONE KNOWS what lies before me, except that I will die, as will we all.  I don’t want to live for all eternity, so why should I be afraid? Or put another way, why should a fear of pain in the future cause me pain in the present?

On November 13th, I’ll undergo the first CT-Scan since I began chemo. The results could be crushing. They could also indicate that the treatments are working beautifully. They’ll be given to me roughly a week after that. There are indications from my body that there have been positive changes: certain symptoms of my cancer have simply vanished. What should I do with these thoughts in the meantime?

Mostyn, Thomas Edwin; Peace; Manchester Art Gallery; http://www.artuk.org/artworks/peace-205642

In a lovely, thought-provoking novel by Matt Haig that I’ve just finished, titled How to Stop Time, I found this series of questions. To the question: What am I afraid of? ,  I would add: Why am I afraid?

 And then, I would turn to this list of questions, which is nestled at the end of Haig’s How to Stop Time, and I would delight in the answering:

 “And, just as it only takes a moment to die, it only takes a moment to live. You just close your eyes and let every futile fear slip away. And then, in this new state, free from fear, you ask yourself: who am I?

If I could live with doubt, what would I do?

If I could be kind without the fear of being fucked over?

If I could love without fear of being hurt?

If I could taste the sweetness of today without thinking of how I will miss tomorrow?

If I could not fear the passing of time and the people it will steal?

Yes.

What would I do?

Who would I care for?

What battle would I fight?

Which paths would I step down?

What joys would I allow myself?

What internal mysteries would I allow myself?

How, in short, will I live?”

 [This is an excerpt from Matt Haig’s How to Stop Time, Harper Collins, 2018, p.314]

Mostyn, Thomas Edwin; Peace; York Museums Trust; http://www.artuk.org/artworks/peace-8073

 

 

 

 

THINGS TO CONSIDER WHEN YOU’VE BEEN LIVING WITH CHEMO FOR A WHILE…

October 29th, 2018

  1. Looking at your face up close in a mirror, like when you’re putting on makeup, you see the small ravages of chemo: the darker skin over your lips that looks a little like a moustache from a distance; the much deeper circles etched under your eyes that cause you to use a concealer stick for the first time in decades; the strange complexion you have that’s like an unhealthy tan but is really hyper-pigmentation caused by the chemo (which has made appearances all over your body too) ; your missing lashes and eyebrows, thinned to match your bald head that is now growing a fluffy, bristly down that’s as white as your mother’s was. The eyes that look back are knowing, and that brings you closer to yourself, and perhaps, to the knowledge that you’re stronger than you thought.
Kim, Jung Hyun; Face; Birmingham City University; http://www.artuk.org/artworks/face-32855

2. With everything that has been stripped away, you have never been more YOU. Accept yourself.

3. When you wear your beautiful, real-hair, expensive and stylish wig, no one can tell you have cancer. But oddly enough, you very often choose to leave the wig behind—which still feels like a disguise—and head out with one of the cool caps or beanies you thought to buy before chemo even started; before you lost a single hair on your head. The other day, at a local tea shop, the assistant greeted you saying: “Oh! I love your new haircut! It’s lovely!” and before you even took a nanosecond to think, you replied: “Oh, thank you! It’s a wig! I’m in chemo!”. You were surprised and a little dismayed to see her turn beet red from discomfort. That wasn’t your intention: it just came out that way !

You find that many things that once frightened you no longer do.

4. Your life is on a brand-new track. Your days have emptied out to make room for chemotherapy treatments and medical appointments, and tests, and rest, and recovery. In exchange for the loss of your ability to work and of such a big portion of your energy, you’ve been given lots of static time—the kind that allows for calmness, quiet, peacefulness, meditation, writing, reading, watching, thinking, listening, and just being. You’re more often alone during the day because you’re home, and you find that this solitude is mostly replenishing. You have never felt so little stress, so at peace. You can’t quite understand how this is so. You know it won’t (and shouldn’t) last. It isn’t life, but it’s your life right now.

Reuss, Albert; Woman in Chair; Newlyn Art Gallery; http://www.artuk.org/artworks/woman-in-chair-14926

5. Being open about your cancer and treatments, especially the way you have, with a series of blog posts, has not made you a pariah. Instead, it has opened channels with people you’ve never met and some you barely knew. It has deepened many friendships. It has given you AND others a different means of understanding cancer and its treatment, and of banishing judgement, isolation and misunderstanding. At least, that seems to be what you want and what others want too. You huddle with them, and it warms all of you.

6. During those low post-chemo days when you sleep, shiver, and drag yourself about, and know that your body is drained and struggling, it’s okay to submit to its needs. Your body is brave and tough and wants to get you to the end of this trial. It’s doing everything it can. Love it back.

7. The future is unwritten.

Munnings, Alfred James; Sky Study; The Munnings Art Museum; http://www.artuk.org/artworks/sky-study-4150

TENTATIVE CHECKLIST: how to best live with cancer, its treatment and its aftermath—some ideas

Part of the THIS IS THE MOMENT series at REEF.

One.  When the impulse comes to isolate yourself, resist it. You can give in at first, because maybe your energy or your blood count are low, or you’re in pain, or because you need the quiet and the rest. But not for long.

Powell, Joanne; Isolation; Royal Birmingham Society of Artists; http://www.artuk.org/artworks/isolation-29704

Humans who love you bring energy of the very best sort. They don’t always know that they’re also bringing the noise of the outside world that can make you feel despondent, or that you don’t feel able to deal with. They almost always mean to bring LOVE and to give CARE—a good meal, a hot tea, a movie watched together. Laughter. Companionship. Being seen and feeling connected. The things that make life worthwhile.

Milroy, Lisa; Doing, Thinking, Speaking; Arts Council Collection; http://www.artuk.org/artworks/doing-thinking-speaking-63895

Two.  If you feel low. If you feel lost in end-of-life thoughts, or fear, or sadness. If you feel purposeless. If you feel sorry for yourself (a totally legit feeling, in my estimation, in small doses). If you feel pulled out of time and unmoored…

READ A MATT HAIG BOOK.

This advice will fit most of the situations you encounter. Matt Haig is a lovely, British human being, husband and father. He’s also a prodigious novelist (7 times) and memoirist. Every book of his that I have read (3 so far) has been poignant and filled with such joy that he has changed the way I think about life. I’m convinced that he writes each one with this intention. The first one I read was The Humans (2013), which delighted me and left me filled with joie de vivre and also left me pensive. The second one was his startling memoir called Reasons to Stay Alive (2016) in which the reader learns about the author’s long battle with depression. The title suggests he was victorious. And, with The Radley’s (2010) waiting next to my bed, I’ve just finished How to Stop Time (2018). Anyone living with cancer will find this beautiful novel helpful. All of Matt Haig’s books leave the reader feeling replete, and of all of them, I think How to Stop Time may be the most touching and most likely to help you to keep thinking and feeling on a path without fear.

Three. Write. Keep a journal. Jot down your soul states or random thoughts or observations about the leaves falling; or the noisy truck that’s getting on your nerves; or how much you miss the real taste of food; or what made you blue just hours before; or what happy thought or insight you just had…

Write about a hobby, or something that interests you.

Make a list of all of the people you love and care about.

Make a list of the things that worry you.

Write about your pet.

Make a list of all of the foods and drinks you’ll gorge on once chemo or radiation are done.

Make a list of what you miss, then make a list of everything you would have missed had you not been on Cancer Hiatus.

Lucas, Caroline Byng; The Yellow Book; William Evans Bequest, Bangor University; http://www.artuk.org/artworks/the-yellow-book-177836

Four. If you’re like me, and tend or tended to wear the same clothes to chemo or radiation treatment all the time—in my case, the tops I wear have to have front buttons so that I can leave with an infuser filled with a chemotherapy drug tied around my waste that continues to pump its meds into me for 2 days— throw it out or give it a vigorous washing and then give it to NOVA or any local charity. I think that once that part of treatment and living with cancer is done, you shouldn’t wear its uniform. Make a fresh start. Buy a few items in new and different colours. Make the outside match the changes inside you, especially the changes in the way you see your life, and the way you see yourself.

Allen, Phillip Macdonell; Small Moments of Little Joy; Government Art Collection; http://www.artuk.org/artworks/small-moments-of-little-joy-27592

Five: Cancer’s aftermath

This isn’t really about the future. The future is unwritten.

This is about how far we’ve travelled so far, what we’ve become, what we hope for or know that we want from life.

Live in the now and try to live without fear.

 

BEATS: Notes from chemo base camp, part 6

Saturday, October 20th, 2018

Well.

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

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

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

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

Fall, at our new home

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

Monday, October 22nd

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

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

Fighting cancer Rocky Balboa style

October 23, 2018

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

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

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

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

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

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

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

Happy.

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

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

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

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

Last night, I know it beat happily.

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