Patron Saint of the Plague

Had I known St. Valentine encompassed anything but Hallmark love, I may not have chosen February 15 as our wedding day. Not only did it land at the end of reading week (I was a student at the time, writing mid-terms and papers), but I expected proximity to be a good thing: St. Valentine was the Patron Saint of love, after all. Had someone informed me thirteen years ago he was also the Patron Saint of fainting and the plague, I might’ve moved our wedding plans to June.

Fainting and the plague have been ours for much of the past five years. We have become raw and bruised, but also humble and tender. We have become more honest and thick-skinned, and sometimes impatient, but also more gentle and understanding, and infinitely more patient.

We know our run may not last the expected decades most of us get, and so we hold hands in the night, and wrap arms, and share our tears, our nightmares, our grief. We also make a point of finding humour daily, of laughing together. We have fallen and felt shamed, but we have also got up again, and felt profound gratitude. We have been in the crucible and had our lesser selves exposed, and we have emerged, and reflected the light. We are in the crucible now, but we’ll emerge again. We’ll do all these again, hopefully many times.

The crucible is unbearably hot at times, utterly capable of destroying love. It is intense, creating chemical reactions that threaten destruction. It tests resiliency, and if we don’t bend, we’ve learned, we’ll break. It is terrifying, as we’ve both experienced the death of love in our first marriages.

Still, before all this, and perhaps primarily during all this, our love has grown. I hope the future holds easier and happier Valentine’s Days for us, but either way, through thick and thin, in the fire or not, I believe we’ll be in it together.

 

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Hot August Nights, Cool August Mornings

Saturday found a tired and depressed me lying on the couch with my equally tired and depressed husband, me being very careful not to bump my very sore arm in any way. Listening to music and to summer sounds coming in through the open window, reading, napping, my more minor aches and pains gradually receded a little. For a while, it felt very much like the cabana we had in Hawaii all those years ago, minus the warmth of course, and the breeze and the sound and smell of the ocean, it being a cool rainy August day in northern Alberta. But still, it was lovely, so lovely.

What is it that is most potent in making an ordinary, tired, post-treatment afternoon lovely? It can’t be the exotic extras of tropical breezes, not really, not when the feeling is the same as the one that comes from the simple presence of the human being faithfully sharing the moment with you, can it?

That sore arm–it’s throbbing with yet another damaged vein, inflamed and hard and the diameter of a pencil just underneath my skin. This is what my treatment does to my veins and other sensitive cells: it burns them.

Earlier this week, friends tell us about their daughter’s pain, about their anguish, sweeping and soul-threatening. I think of another friend with cancer, of her family’s grief and fatigue. My nights are restless, morning coming too soon, way too soon, 5:30 AM too soon. I’m tired and want the blissful escape of sleep, and on one particular morning am weepy and angry, not the tiniest bit capable of gratitude.

So I drop the bar a little. Gratitude can wait; it will return in due course. For now the task is to tolerate the emotional and physical realities of the moment. I’m sick. I’m trying to get well, and this is, as one astute friend put it a few days ago, a challenging job. It is an exhausting job, and a boring, lonely, uncomfortable, and frightening place to spend so many of my days.

The living room abruptly feels beyond familiar and boring, impossibly and endlessly the same. I’ve clearly spent too much time in here over the past eight months, time enough to develop a serious case of treatment fatigue and cabin fever.

It’s too early in this chemo cycle for the idea that has now popped into my head. My body is fatigued, my blood counts are low, and I probably shouldn’t, but I’m alone, and a little impulsive at the moment—I start pushing furniture around to rearrange it all, so it feels a little different, gives me a little different view. I don’t have stamina enough for a bike ride or a walk, but this, the little bursts of energy required for moving furniture, this feels good.

I try to keep a gratitude journal of sorts, to remind me when I feel anything but thankful; I learned this not from Oprah, but from my parents. I decide now, in this little window of opportunity, to visit it.

I felt well, relatively, with my week off treatment last week, and my Folk Music Festival experience was, as always, rich and wonderful, delivering hot August days and nights, and sound enough to fill thousands of hours and ears. Also wonderful was the supper we had with friends the night before this last treatment. And then it was back to the Cross Cancer Institute, gratitude becoming a little elusive again.

The best kind of medicine arrived again though, as it always does. This time on day two of my chemo cycle, in the form of a friend dropping by with an impromptu lunch, bringing rice rolls, beautiful sweet corn from her garden, a lovely pineapple coconut loaf of bread, and an open grounded spirit, ready to engage, to understand my experience, and to be real about her own.

Staying grounded is vital. I have a number of reasonably reliable tools to that end, but none more so than face-to-face human connection.

Is that vein infected, I wonder for the millionth time? It sure is red and swollen. I’ll call the hotline tomorrow, or take it in to Emergency if it gets worse, I promise myself. For now, I immerse myself in Gabor Maté’s In the Realm of Hungry Ghosts. I’ve read it before, but the title beckons. I’m living with hungry ghosts of my own right now, ghosts that seem to have grown larger with illness, with being unemployed, with not knowing my future, with being unsure of my role, my purpose.

Maté reminds me that addiction arises from the desire to be free of wanting, free of longing for a different state. “The addict craves the absence of the craving state. For a brief moment he’s liberated from emptiness, from boredom, from lack of meaning, from yearning, from being driven, or from pain.” He reminds me that that emotional isolation, disconnection, powerlessness and stress are the conditions that create the neurobiology of addiction in human beings.

I don’t want to encourage this kind of neurobiology, and resolve yet again to resist the temptation to allow feelings of powerlessness and disconnection to grow during this period of unusual stress. I drag my husband and my throbbing arm to see a musical radio play at The Fringe Festival. I love Edmonton for these things. The play is funny and silly, the singing beautiful, and it keeps me smiling.

Afterwards, we do what we do less often now that I’m not well, but used to do regularly: on our way home, we stop at a little wine bar across the street from where we live. I have a blueberry tea, and we share some snacks, and I’m still uncomfortable with my arm, but it’s lovely to be out.

When I wake this morning, another overcast and very cool August morning—eight degrees when I first check—I gingerly check my arm. It’s still tender, but not throbbing, and less red, just an angry, enlarged vein. Friends have suggested brunch. We end up on a rooftop under heat lamps, and, again, it turns out to be a couple of hours of the most excellent kind of medicine. My vein will heal, as will the rest of me.

Rocky Terrain and Chemo-brain

hanaI 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.

Full Moons, Dirty Feet, Blunt Hammers

valley trailAugust is the most delicious month. I can taste it, despite the activity of gremlins in my genes and the giant tangles of disillusionment and uncertainty that have settled in my bones.

August is perfection, abundance, glorious maturity. I have no words for the magic of the canopy of leaves over the path I walk; all I know is that I see the miraculous more easily at this time of year than at any other. The rest—the early morning rush of trying to untangle yesterday’s problems, the late night flow of sorrow over the day’s events—it’s all there, but August, with its strong and hopeful song, has a way of expanding the moment to make room for all of it, with little effort on my part.

Dead centre in the glory of summer, hitting me like a large blunt hammer, I see in my friend
the crippling effects of her multiple sclerosis, and in another (and in the mirror) the fatigue
and fear that laces cancer treatment and oncology visits and statistics that scream defeat and recurrence. In my body, I feel the effects of confused and bruised mitochondria, hungry cells. But for now, there is August. August with its overgrown gardens and fresh greens in abundance. With its built-in gratitude. With its books. (The Biology of Belief by Bruce H. Lipton, for those of you with a hungry, science-minded streak, curious about FF hill 2014why all your efforts of positive thinking and movement toward your goals still haven’t built a solid grate over the deep hole you sometimes fall into.) August with its muddy, sweaty feet, with its outdoor music powerful enough to get thousands of us dancing barefoot under the full moon on our river valley hill.

Textured Beauty and Joy

mall ceilingIt was lovely, the abundance of the week, but so is this right now, this quiet Saturday morning in the wake of it all. It was lovely, the intensity of a short but delicious visit from my son, the abundance of turkey and rouladen and dirty mashed potatoes piled high, of family with all its limps, of spirits and sweets and thoughtful gifts and silliness in the forefront, grief in the wings. But so is this, right now, just the two of us, our space, our love, our music and books and comfy cottons, a glass of water, a cup of coffee, some sit-ups, a few stretches, last night’s wonderfully crisp beer and juicy bacon avocado hamburger still resonating in my memory.

It was very powerful cracking those coconuts the other night too, with the full moon, just before the winter solstice, as a way to explore the concept of our souls. The loud noise, the milk spilling out, the instant awareness that to be alive is to be loudly cracked open, to have chips, to be uneven and raw and nourishing all at once. It was a brilliant metaphor, thank you, Tara!

Every year the sun stops, and we feel the darkness, and we light candles and think about the birth of hope, and how babies embody perfectly the beauty, strength, determination, and resilience of our humanity, how they embody perfectly our vulnerability, our dependence, our endless hunger, our existential loneliness, our desire, our need for connection.

Your new granddaughter, by the way, so much like you dear Jeff, is stunningly gorgeous.

I feel so lucky. I am so lucky. There is the confusion and fear and insecurity that comes with consciousness, but there’s also this: so much love, and the wonderful gift you give when you allow me to articulate my truth, my grief—the complicated grief we all have and are conscious of to varying degrees. The wonderful gift you, dear Robyn, give when you invite me to sync my vagus nerve to yours, when you listen with insight and wisdom and empathy. The wonderful gift you, dear Jeff, give with your presence, your arms around me, your truth, your edgy humour, your tears and self-disclosure.

Let’s do it again, and again—open our eyes wide and speak the truth—as long and as well as we can, because though consciousness, like all good things, is fragile and easily lost, it is what makes laughter and love possible, what makes it all so textured and rich and big and interesting and wonderful.

From Paraguay to Edmonton, Stars

People are so, so cool, bent toward courageously and determinedly creating great beauty and life and love and joy in the wake of much damage and loss.

Not all people are cool of course, there are plenty of small-minded, deceitful, egotistical and evil ones around too, I know. But still, so many of us are so cool, so inspiring.

In a desperate makeshift slum built on a landfill in Paraguay, a musical instrument is as valuable as a home. Here, children make beautiful music from violins and cellos made from trashed wood and oil cans and forks and other metal tools once used to make things like gnocchi. (Thanks to my sister for sharing this little video with me this morning.)

I will work harder to be less a princess, I promise myself.

The world, even this part of the world, is full of people demonstrating these same qualities of resilience and beauty. And at my husband’s company Christmas party last night, I came across a number of them.

The first was a woman whose daughter has been dealing with cancer at a time in her life when she might rightfully think she deserves to be occupied with more normal young-adult activities. She has lost things nobody her age should lose, and things no mother should have to watch her daughter lose. These two women are two of many, I know this, but still, up close, it’s impossible not to feel the impact of the familiar story. My heart ached for them, and I was, as I have so often been, filled with immense and unadulterated gratitude that it was me who got cancer instead of one of my own children.

Then there was a conversation with a fellow cancer survivor. This man’s treatment has exacted a high price, initially in the form of debilitating neck surgery, extreme illness leading to a hernia and a feeding tube, and I can’t remember what else except that it was a long, long, slow process of recovery, and that he’s still paying the tab in the form of neuralgic pain and hearing damage and more. But my experience with this stranger was that he is a generous and joyful person, despite the cost of being in his body.

Again, I promise myself to whine a little less.

And finally, inspiration and joy from a young man I just might be somewhat biased towards. He went out of his way to come say hello to me, something I don’t take for granted—he was there with his peers after all, and I am his mother. He introduced me to his colleagues on the dance floor, who unexpectedly offered hugs along with their smiles. He danced with abandon and joy. And every day, he injects insulin as often as the rest of us reach for a glass of water. He lives with blood sugar instabilities that are not only extremely frustrating at times, but very dangerous.

I know that most of us carry burdens or one sort or another, fears and heartbreak and things that are sometimes not visible, or are poorly understood by society, but that are acutely painful nonetheless. We’re lucky and unlucky in different ways, and to varying degrees.

And alongside that, I know this: Music and dance and beauty and creativity and generosity of spirit are in our blood, and I’ve been reminded that those truest and best parts of ourselves are the parts worth feeding.