Rocky Terrain and Chemo-brain

I woke too early today, too much on my mind, envious of my sleeping husband. I read an article on the health and cancer-treatment benefits of intermittent fasting, thought about it for a little while, and found myself responding contrarily. When isn’t intermittent fasting an unavoidable, built-in, and unpleasant feature of cancer treatment? Besides, endorphins and pleasure, essential to healing, can be hard to come by when you’re in cancer treatment, and food has always been a reliable stand-by for me on that front, so I doubt I’ll be voluntarily restricting intake anytime soon.

So I make myself a piece of toast with butter and soft mild Gouda, and feel a little less contrary. But you’ll forgive me if this post is all over the place? Attribute it to the rocky terrain I’m on, or chemo-brain? To chipping a tooth yesterday, on a piece of toast of all things? To noticing I’m losing my very, very short hair yet again?

It’s Day Four of this round, going better than last, and the one before. Fresh morning air is coming in through the open door. I feel a moment of gratitude. One can be contrary and thankful in the same breath, right?

I got out on a bike ride on the weekend, and out to eat, and to the Heritage Amphitheatre at Hawrelak Park for the Father John Misty show, thanks to my sister for the last minute nudge. Got a very warm welcome from friends, another endorphin rush. I felt good, very, very pleasantly surprised, almost normal.

I’m not normal anymore though, and I never really forget. Even when I think I have, even when I’m having a great week.

I really did have the loveliest birthday week. Family and friends were beyond generous and kind. I even had all three kids here with me, including the far-away California one, which was a lovely, lovely birthday gift. But here’s the thing—treatment is difficult even when it’s going as well as it is for me this time around. And what happened back in February—when treatment definitely did not go well—has lodged itself in deeply in some part of my brain, from where it occasionally rears its roaring head, as it did the day before my most recent chemo last week.

I’d calmly headed out for my usual pre-treatment blood work and consultation at the Cross Cancer Institute, seeing no clouds of any sort on the horizon. This is routine and straightforward. But what should have been a brief and uneventful visit stretched to three hours, and submerged memory, like an angry volcano, had time to erupt.

The lab took five minutes. A consultation with a new resident took six. The consultation with my oncologist took another six. Ninety-five percent of my morning was spent waiting, seeing so many sick people come and go. This, if you need help imagining the problem, is a lot of time to absorb the treatment fatigue in the air, the oceans of grief and fear in worn-out bodies and fear-filled faces waiting with me, waiting, waiting.

I’m finally finished, leave, and see immediately that I planned poorly. I need to talk to someone, vent a little tension, but it’s a workday, and nobody is available on short notice. One dear friend is enduring her own Cross Misery at this moment. Nothing is wrong, but everything is. I can feel the surge of a powerful wave of regret and need. Today may well have been my last chance for a couple weeks to milk feeling well, to eat out, to have fun, and it’s quickly slipping away. And I need to put into words all the hope, courage, fear, grief, denial—and in some cases, relief and joy—carried in the halls of the Cross.

No problem, I tell myself, I’m an adult. I’m hungry, I’ll lunch alone and run some errands, and talk later. I do this, but did not anticipate lunch would feed the powerful wave of emotion that had hit me. It did. The house was empty when I returned, and when my husband eventually did get home from his meeting, I no longer trusted myself to talk much. I filled in the broad strokes, but they were slate gray and brown and not terribly pretty.

I get on my new birthday bike, which has been the best gift ever. I won’t go hard, I promise my sore muscles. But I do go hard, and further than I planned. On the way home I stop at the grocery store and fill my pack. I think I have my bearings. I get home and remember—chemo tomorrow. And the wave crests. The limbic part of my brain now fully trumps the logical. I wanted today to be a party. I want not to be on the sidelines most of the time when others get to enjoy wine and a bounce in their step and easy untroubled nights. I’m teary and angry and self-pitying.

My husband was patient, and alongside my fear and anger, I felt much empathy for his listening ears. And in the night, his arm around me, I know that though my experience is mine alone, I’m not at all alone.

I finally step back a little from the ambush and see a bigger picture again. It’s been a lovely, lovely ten days, no chemo, so many moments of joy. At my mom’s sunny dining table, I’d eaten my first big plate of food in five days, and it was so good. I left with a satisfied tummy and a giant bag filled with leftover goulash and mashed potatoes, mashed yams, homemade apple sauce, bread, broth, oatmeal cookies and honey cheesecake (for my bones, I tell myself). Have I mentioned that my mother is 80?

A wide river of birthday pleasures is where I was camped for ten days. We ordered in giant platters of amazing Greek food on my daughter’s birthday. And on a perfect, velvety summer evening the night before my own birthday, in the backyard of some very gracious friends, we all ate mountains of divine BBQ’d chicken and couscous, and the most decadent chocolate caramel cheesecake ever. I was high on love and a giant glass of Sangria, last week’s chemo finally taking a proper back seat to my life. On Sunday we enjoyed another made-to-order evening in my sister’s backyard, complete with yet another luscious homemade cake—this one a creamy nutty layer one that is my mom’s signature cake. Birthday kindnesses and lovely, lovely words—words like drops of sweet cream—kept falling on me. A yellow rose and a box of chocolates, a cream-coloured rose from a roommate from 40 years ago, a giant bouquet of chrysanthemums. I felt ridiculously spoiled.

Then I say a bittersweet good-bye to my son, and with it comes an acute awareness that my children have quietly slipped by me in the passing lane. They are smarter, stronger, braver, more honest, and more talented and accomplished than I will ever be. This brings me great pleasure.

I wake early on the day of my treatment. I take care of appointment scheduling puzzles and housekeeping details and pay some bills, and I steel myself. I’m greeted by yet another nurse, who hooks up a juicy deep vein, and, after grimacing for a second, I smile and thank her, and settle in to watch and wait: A slow, clear, silently toxic drip that will beat up my cancer. I focus my mind. Allow the drug to do its work, exhale unwanted effects, and resolve to tolerate what I must with grace.

We finish, and pay today’s slightly smaller but sill giant parking fee. (Do they really have to charge cancer patients these rates?) We leave the dark parking lot and drive into skies turned very dark over the last hour. Hard, hard rain and hail fall, and then, just as suddenly, the sky is blue again, the air fresh. At home, on the balcony, the sun on my legs is warm and soothing. I fall asleep instantly. I sleep again after a little supper, and then most of the night.

Dispatch from the Face-Plant Queen

Time for an update. First though, an anecdote, another nurse-lined hallway one. Waiting to see my oncologist yesterday after nearly five weeks in bed, numb clubs where I once had feet, a vacuum where I once had quads, and morphine and general mud where I once had brain tissue and balance, I decide to visit the washroom. Knees hit the floor first, then forehead. Nurses appear in an instant. “I didn’t pass out,” I reassure them. It takes a while, but I convince them.

“Nice goose egg,” they tell me. I make my way to the washroom; they’re right; it’s a goose egg. But it’s nothing, not in the greater scheme of things.

In the five weeks leading up to yesterday, I’ve travelled nowhere, and everywhere. From a first-round chemo reaction that felt like I’d been poisoned and charred from my skin to my bone marrow, to medication-induced oblivion, I’ve graduated to wobbly first steps down the hallways of our condo, the parking lot, once even to the mall in a wheelchair.

The excellent news is that my oncologist takes all this in without missing a beat. “It’s the Taxol,” she says, “We’ll remove it from rounds two and three,” she offers. I can’t believe my good fortune. Another two rounds of chemo, yes, but they ought not to be anything like that first one was. And then, icing: “We can postpone tomorrow’s treatment for another week if you’d like, yes, allow you to gain a little strength back.” I’ve almost won a lottery. Still, I’m frightened.

Back home though, I’m elated, hopeful, eager, and for a moment think my life might resume tomorrow. I swing back to fear. And back to eagerness. I speak to my family doctor about reducing medication dosages. My life apparently won’t resume tomorrow, and medications will be necessary for some time yet, doses titrated down slowly. “This will take months,” she says, but it will get much, much better, and it will pass. But it’s so nice to hear your voice!” I’m deflated. But how nice is that, a doctor who returns a call and changes a prescription without insisting on an office visit?

Patience has never been my forte. I will have to practice.

I love all of you. The young adults forever tied to my DNA and my soul, whose voices and eyes and bodies, even through the oblivion and across the miles were such potent medicine. The mother-daughter familiarity lying on the bed next to me when I surfaced from my oblivion states, whose smiles and tears made me remember all I needed to know in that moment. The man whose love has so often carried me over the years, and who is now completing an intensive course in patience, and in finding new TV series and bites of food just the right flavour for me, and in patience, and in domestic and kitchen literacy, and in patience, and in worry and sleepless nights, and in patience. The man and woman who gave me life, whose tears I felt across town, the sister who kept offering to drop anything on a dime to come meet my needs.

I love those of you who sent their magic from across the oceans, those who sent their love from the pews of their places of worship and got their friends on board to do the same. Those who, a short time ago, I knew only in a service-provider capacity who stepped beyond those bounds to offer their amazing healing skills, their empathy, their acute intuitions and minds and just the right metaphors and insights to get the frontal lobe of my brain crackling in ways that—science journals now tell us— literally and in measurable ways alter the biology of our cells. Those who breathed the endless human capacity to be selfless for an hour or two and from distances large and small simply channeled the divine. Those who offered to dance despite hardly knowing me, those who transmitted their energy through their hands on mine, their eyes locked into mine, those who refused to take offence at my family-only visitation request. Those who supported via healing circle ceremonies, bone broth, foot massages, wheelchair outings, fuzzy socks and pretty things in general, via stew and kabobs and open-eyed conversation for my tired newly-graduated nurse-husband.

They’ve been endless days and nights, and may be for some time yet, though hopefully not to the same degree. But the memory will fade, the injuries and fear will heal, the cancer will give way. And I hope that what will remain is the awareness of wealth, of divine holy goodness.

The Thin Light of the Moment

There’s no better time than this moment right now, while that sliver of love is just barely still present in the night sky, to light a fire, to burn off some of the old and extraneous, and make room for something new.

It’s like our souls know this. It’s time again, they whisper. Or perhaps it’s just the souls of those of us who have always been conscious of the rhythms of the universe, those of us who have bled with these rhythms, those of us who know that it is a good thing to shed that which has become unwieldy and far too heavy. Perhaps it is just the souls of those of us who knew, even as children, the comfort offered by a patch of grass and a cold windy dawn, those who have always ached with the beauty of nature and known our connection to the air and water and soil and the process of photosynthesis, which truly and literally are our essence, our life.

Perhaps this sitting by the thin light of a sliver of a moon and a bonfire is only for those of us who know the only hope for our sometimes deeply-eroded and polluted joy is exactly the same one we hold for our broken oceans and lands: take a step back from immediate gratification and remember our origins: We are made of the earth; we are divine cosmic miracles, with an innate ability to renew and heal and create.

So light the fire, and exhale, exhale, exhale. Exhale the heavy particles that have for so long robbed you of vitality. Inhale hope. Trust the alchemy our bodies and souls are capable of in the dark of the night, alchemy that has turned rage to courage and joy before, and can do it again. Trust our enormous capacity to tolerate and survive and gather up the scattered pieces of our lives. We need not fear the ache in our bones and mitochondria; we need not fear our rage; we need only compassion for it in ourselves, and in each other. Though it may be a craggy high place we have climbed to, we need only to keep returning to oxygen, to our hearts, sore as they may be, and we’ll find that even at this altitude we can light a fire, and find enough air to breathe.

So by the light of the fire, we wait. We wait for the sliver of love hanging in the sky to grow into bright and pregnant fullness again.

And as we wait, we’ll find that, even here, our voices can remain both strong and gentle. We’ll find that the words so often stuck in our throats can return to facilitate the transformation that takes place in our bodies when our truth reaches the ears of an empathetic human being who too has sat often by this same fire. We’ll find that as our words land upon the soul of that other, it becomes possible to integrate a little more of what we know in our minds and our bodies. We’ll see that those scattered bits of soul lying all around us are still glowing, waiting to be loved and reintegrated. It is here in the soft darkness that we, like the naked infant in the incubator, grow strong.

Here, in the firelight, we know deeply that we are not kings of the universe, but rather keepers of it, part of it. We know deeply that we carry within us an ultimately indestructible divine essence. We begin to know at the level of our mitochondria that there is no shame in not having filled the soul of another by reflecting exactly what they wanted us to reflect, no shame in not fitting a convenient template. It is here we learn that there is no shame in the ways we’ve found to carry on, and there is no shame in our needs, our thoughts, our creativity, our desires and dreams and feelings. There is no shame in putting an end to mirroring what others are begging us to mirror, no shame in asserting that this, what we are putting forward now, though not what they had hoped, is in fact who we are. There is no shame in having thought for too long we might fill their emptiness. There is no shame in being female, and there is no shame in saying no. There is no shame in the rips and patches in our party dresses; we’re still coming to the party.

It is here, waiting by the fire, that we know the pointing fingers of others simply mean they have forgotten how to see and feel and feed their own souls in the thin light of the moment.

(Photo credit: Marcus Obal, Wikimedia Commons)

We Dance

I have an 8 AM appointment. I’m delighted to be outside, walking, breathing the cool fresh morning air, passing others on their way to work, feeling the muscles in my legs, glad for bare feet and sandals.

Later, in the heat of the day, hiding out in the cool shade of our cave with some time to focus, I read about Family Constellations Theory, and am happy not to fall asleep three pages in, which is what happens when I read before bed. Reminders: accept with gratitude the life our parents gave us; accept the particulars that life and those around us have given us, both the good and the bad. When we do this for ourselves, the pain of others in our constellation is mitigated too. This is very hopeful to me.

I have a conversation with my daughter. I am proud of her, and of her brothers, proud that for all the pain our little constellation has carried, we are busy pursuing joy and compassion and forgiveness.

I tear up fresh butter lettuce, and I mince sweet peppers and cucumbers and shallots and radishes for a crisp cold salad. I top it with mango Stilton cheese, and fry up a couple of eggs to go with it. It’s a nice summer supper. Afterwards, we go climb those green, green river valley hills, me and my husband, and I even manage, for the second time this week, to do it without falling and skinning my knee. (I’m going to credit my new runners; I’d had the old ones for about 15 years, and they tell me that’s too long.)

Overnight, a storm brews, though not outside. In the morning, for reasons that only now in retrospect make any sense, I wake up remembering all the other stuff of my life—the not-happy stuff, the betrayals, the very real challenges currently staring me in the face. And when I say I remember them, I don’t mean they are benign little facts in my brain. I mean I remember them, loudly, as if they are, all of them, happening this very second. Yesterday’s sunny skies are gone.

I make some plans—work is, to my mind, the best medicine for most things. There are a few problems with this however, one being that I am at the moment a tad underemployed.

Still, I keep busy, though I remind myself not to rush, that I sometimes break things or hurt myself when I rush. In the evening, I sit outside and feel the breeze, watch the rain, the hail. It is soothing.

I listen to a CBC podcast, and from Daniel Levitin learn that in most of the world’s languages, the word for music and dance are the same—there was no reason to have two. Listening to music, singing and dancing, mirroring another’s movements and vocal sounds—these activities create empathy and bonding. They produce a cocktail of pleasure chemicals, one of them being Oxytocin, the hormone of love, trust, bonding. The neurons in our brains synchronize to music. And they also synchronize us to each other as human beings in the absence of music, when we walk together, or listen to each other, look at each other. We actually begin to converge physiologically within seconds.  Cooperative work brings about deep neurological changes, a sense of purpose, being connected to a larger whole. We are dancing with each other all the time.

This, I decide, is at least part of the reason for the current storm. My work is mostly too isolating.

The new day dawns gray again, literally now. I carry on with my get-through-the-to-do-list approach. But today, I am also meeting a friend for lunch. On my way, deep in thought on a narrow sidewalk, I notice the big yellow school bus nearby, sort of. It has only partially registered. It makes a tight turn, and swings its very long back end into the pole I am standing right next to, barely missing me.

Minutes later, I splash coffee not quite hot enough to scald me on my hands. Over lunch, I have face-to-face conversation. The clouds burst outside the window, and we share my umbrella as we leave. It really is, as my friend said, a lucky day.

 

 

 

 

 

 

What the Body Remembers

Do we really record traumatizing injury in our muscles and fascia and hearts and stomachs? This question has been on my mind a lot lately. If it’s true, then holistic therapists of all kinds are potential healers in the truest sense of the word, and the work done by massage therapists and herbalists and acupuncturists is every bit as important as that done by psychotherapists and medical doctors and others more commonly accepted as vital to our health.

I was on the receiving end of a deep tissue massage last week—torture of the sweetest kind, I told her. (I love you, I love you, all you beautiful and patient therapists!) In the wake of this though, less than 24 hours later, came a wave of intense emotion, which, while inconvenient, seems in retrospect to have been instructive and enriching.

Can these experiences be our teachers, our guides, our medicines? I know there are no guaranteed results for treatments or medicines of any kind, and that acceptance to reality is essential. But I also know that healing takes many forms, and that movement of all kinds—physical, emotional, energetic—is better than stagnation.

We’d been invited to dinner on the heels of all this intensity, and though I’d resolved not to talk about the experience, it was inevitable that it surfaced. My friend, not the one who’d delivered the massage but also a massage therapist, offered, along with her love, some illuminating and hopeful insights into my personality and some potential reasons for the circuitous path my recovery has been taking.

But this idea of chemical or psychological injury being recorded in our tissues—is it supported by science? It’s easy enough to see how physical injury can damage tissues and result in impaired range of motion, reduced lymph flow, and chronic pain. It seems a little less logical that chemical or psychic injury might leave physical footprints, but I do know this: my muscles and fascia and joints do not behave as they once did, nor do they feel normal to the trained hands of a massage therapist.

There’s a bit of distance between theory and what we accept as fact, I know. But what we do know seems reason enough for me to continue to pursue the direction I’ve chosen. Neurobiologists, my therapist reminded me a couple of weeks ago, are discovering that our hearts and stomachs have nervous tissue identical to that found in the brain. They contain millions of nerve cells that register stress and possess the characteristics and biochemical reactions of brain cells, and have an intelligence that can actually lead our brains in how we interpret the world. (Gut reactions.) We also know that neural-like muscle cells are being considered for the purpose of treating brain and spinal cord injuries.

It doesn’t seem all that large a leap to me then, from cerebral memory to the idea that our bodies might remember also.

I know this—injury, whether emotional, physical or chemical, involves the release of enormous levels of stress hormones, hormones that have all kinds of adverse physical effects when they remain high, which is exactly what occurs with trauma.

The idea of our tissues recording the events of our lives is perhaps less foreign when we consider how our immune systems maintain information about past infections to offer immunity. Or when we consider that genetic and epigenetic research tells us that our genes store all kinds of complex information, and that the famine or death camp our grandmothers survived shows up in our genes today.

In light of all this, it ought not be surprising then that the after-effects of myofascial bodywork, or of herbs known to address stagnation, might include emotional responses. And the theory that this stirring of the waters might in the end permit us to more fully process overwhelming experience and perhaps leave us a tiny bit less scarred is extremely hopeful to my mind. But then, I’ve always been determinedly optimistic.

To my psycho- or massage-therapist friends who might happen to read these thoughts—if I’ve understood this incorrectly or left out key elements, please do fill me in!