A Thousand Not-Yets

When you’ve been blinded by the sun,
when three months of struggle have turned into eighteen,
one drug to second, to a third, to a fourth
and your monsters have not yet been defeated,
when your bones sprout blender knives that turn themselves on at will,

when spring rains never came, but fires did
and the earth is now not only parched,
but scorched,
when your skin has become equally parched and scorched
when your dear friend, too, has been blinded by the sun,
screamed a thousand not-yets,
and now lies awaiting her passage
What then?

You are wowed by the brilliancy and strength of those called to sit vigil.
You talk to friends who make you smile,
perhaps indulge in an afternoon G & T,
sleep when you hadn’t planned to
lie awake while others sleep.
You cry,
and hold each other close.
You wait.

For rain,
for thicker skin,
for joy,
for summer.sun2

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Clear Skies, Cancer, Boxes of Chocolates

rain

I want it to rain. Rain, rain, rain, steady hard rain with the power to wash the hot, smoke-filled air and put a damper on the hungry forest fires raging out of control all around.

But then, I often want a lot that is beyond my control.

Just a few short months ago my doctor told me things were looking so good that I didn’t need to worry about resuming chemo until the fall. And just as I’d written my enthusiasm and joy about this amazing news, we learned that our niece had died of her cancer, and that our good friend’s cancer had gone on a massive offensive, progressing to where it had not been in many years, and later, that another friend who lives with chronic debilitating pain was suffering a turn for the worse.

I never did publish that post. It seemed gloating, self-absorbed. But then a short five or six weeks later, I got my own bit of bitter news—some suspicious pain, a reminder that I never did finish treatment back in March, some worrying test results, and an all-new treatment schedule of my own, one that was definitely going to interfere with my enthusiastic summer plans. No big surprise, but still, my husband and I sat down at the kitchen table and wept.

The good news was that we were going with a different drug, one that carried no risk of the horrible neuropathy and systemic pain I experienced in February, one that was going to be “virtually impossible to have a severe allergic reaction to.” This was calming, hopeful, gratitude-producing information.

Still, it is a chemotherapy, medicine on a mission to kill cells both problematic and essential. I tend to be both optimistic and anxious, sometimes in equal parts, sometimes in swings of extremes, but I set out for my first treatment relatively tilted toward optimism. It went well. Until two days later, when I again found myself weeping and cursing both the universe and our not-very-progressive state of cancer treatments. I spent nearly the entire time between my first and second treatment feeling miserable in old familiar and entirely news ways. And tonight, at 4AM two days into this most recent cycle, I’m insomniac (thanks to side-effect medications), and waiting desperately for rain.

Life, eventually for most of us, turns out not to be the proverbial box of chocolates Forest Gump’s mother promised after all. It has far too many bitter, not-at-all chocolate pieces, bad-tasting surprises covered in very bitter-tasting chocolate look-alike.

Still, through the heat this past week, I found sweetness alongside bitterness again too. My daughter has been wanting to accompany me to treatment for a long time now, and had the day off this time. She’s just finishing a move, and carrying sorrow and struggle of her own, but she put her curly hair up, and put on a bright yellow dress, and looking like the original blossom of beauty, drew smiles by the dozen walking through the halls of the cancer clinic with me. She held my hand as they started the drip, and we chatted, and I felt loved. The treatment was the most stream-lined ever, record-breaking for me. Not a hitch, in and out in an hour.

Another dear friend, highly skilled with tiny strategically-placed needles, offered instant nausea and pain relief and an amazing endorphin bath for my tears the next day. I felt loved. Another friend, by way of the music she makes, offered her version of prayer. I felt loved. Another offered steaks for the boys and birthday cake for two of us. I felt loved. Another yet is planning an intimate potluck birthday get-together to include a few other friends and our now-grown children. I feel loved. My sister, dropping in with a lovely plate of cooling watermelon in bite-sized juicy delights, had set a picture of me as her phone wallpaper. “I was having a moment,” she told me. I felt loved. My mom called to see what goodies she could cook up for us: Baked ribs for my husband, sugar-free apple-crisp for me, and who knows what else she’ll whip up. I felt loved. She’s 80, which is how long I plan to stick around in spite of the odds against me. Others texted and called, offering to come visit, or chat by phone, which I will joyfully accept with every significant return of energy I experience, I promise.

My youngest son, in excruciating back pain over the past month, picked me up from my needling friend’s place yesterday, and elicited the same enthusiastic looks and smiles as had my daughter’s sunflower-yellow dress the day before. No, it wasn’t a yellow dress, though it may have been as much his shorts and shirt as his charming grin. My son from California, the one who will be wearing his outstanding laugh and energy and medical mind, is coming for a visit, and will be here for his sister’s party, and mine, and his grandma’s, and just hang out with all of us.

I feel loved.

I have new and better chemo side-effect management pills this round, so should be much better by today’s end. Better yet, I get this week off treatment entirely. I’ll get to go to my daughter’s birthday party, and I’ll get to go to my own, and I’ll get to hang out with the kids. Love, like light on a horizon, or stars in a dark desert sky, beckons.

It may not be exactly the summer I planned, but I’m going to be hopeful the treatment schedule will accommodate at least one traditional highlight for me: Four days of the Edmonton Folk Music Festival, for which we always go to great lengths to get tickets for. Many favorites coming this year: Angus and Julia Stone, Brandi Carlile, Danny Michel, Edward Sharpe and the Magnetic Zeros, Harry Manx, Sinead O’Conner.

So alongside the box of imitation-chocolate covered bitter misery, there have been genuine chocolate surprises. And, from the weather experts yesterday, a promise of rain, lots of rain, cooler clearer air. I’m counting on them.

Jacqui

Jacqui, dear Jacqui, I’ve been thinking about you all week, and I know others much closer to you have thought of you every minute of every day. We all miss you so much, and wished you could have been there last weekend at the church where we gathered and wept waterfalls of tears into tissues and baby blankets and onto our dresses and shirts.

Many of those gathered to say good-bye got up to talk about you, about how magnetic your laugh was, how quick your humour, how you lit up the room. They reminded us that just as you loved intensely, you felt many things intensely, not just the positive. They talked about the wisdom you embodied, wisdom that went beyond your years.

I felt honoured to be there with those who called you daughter, sister, cousin, niece, friend. I felt thankful for the conversations we’d had in recent months, conversations that mostly revolved around mutually understood pain, uncertainty, heartbreak, medication side effects, cancer, and sometimes crayons and colouring books. jacqui blog pic

When I confessed to you that I often referred to you simply as my niece rather than explaining to everyone I was actually a step-aunt, and asked if you minded, you energetically told me that of course you didn’t, silly me! So kind, always, that was you.

My heart broke on Saturday for those who held you in your first hours here on earth and resolved to protect you from this world, and who heart-brokenly admitted there is sometimes little protection to offer. My heart broke for everyone who loved you in a million ways, and managed, through their choking tears, to tell the rest of us more about you, about the many ways you inspired and enriched them.

Before you left, you told us, clearly and eloquently in that well-read blog post, that life isn’t too short, that our lives are exactly as long as they should be. You told one of your friends that you’d enjoyed more joy and love than many who live to be 90, and how could that be something to complain about? I want to live with that kind of gratitude.

Still my heart broke simply for the seeming senselessness of a life snuffed out at 28 years. The faces of my now-grown babies came into sharp focus, and I privately allowed myself honesty: I know that believing our lives aren’t too short is essential to making peace with our imminent death, but today I can’t fathom how any of us will ever feel that your life wasn’t too short.

How well you prepared those closest to you for this day though. How beautifully they talked about it. I’m positive you listened in, and that you were happy with the humour that came through the grief. I’m positive you enjoyed us walking through your favourite park the next day, stopping at all your favourite spots to say good-bye and let you go once again, into the sky, back to the earth, to a time and place outside of this one. I’m positive you enjoyed us eating those ice-cream cones you’d so brilliantly and generously thought ahead to buy for us because you wanted us to end our getting together this weekend with pleasure too, not only tears.

I left resolving anew to live as fully as you did, to honour body and soul, to embrace rest as well as productivity, pain as well as sorrow. I want to milk life, and by that I don’t mean I have a bucket list or that I need to travel or that every day is a party. By that I mean I want to live with gratitude, whether I’m energized or tired, happy or sad, whether I’m reading or streaming TV, doodling or cooking or cleaning, whether I’m alone or enjoying family and friends. Whether my husband is next to me or not, whether my beautiful children’s faces or voices are nearby or not. Whether I’m laughing or my heart is breaking.

Still, I felt grumpy yesterday, really grumpy, and felt shame around it, because it was trivial grumpiness: traffic, and medications, and sore muscles, and neuropathy, and other components of everyday life. I felt my irritability was a failure of my resolve to live with gratitude.

But this morning I see it more clearly again: gratitude and irritability aren’t mutually exclusive. Life is irritating and terrifying and heartbreaking as often as it is lovely, and often at the same time. And underneath the irritation, I found intense feelings around life and death, around my dear friend’s current pain, and my daughter’s, and around the uncertainty with my own cancer. And I remembered that though we often feel alone with our pain, we’re not, not really. It’s universal.

You dear Jacqui, showed us all this beautifully. And this, young as you were when you left us, makes you our teacher, our guru. Your life reminded us that life is a messy and wonderful gift, and though I’ve often said these words, I plan to know this ever more deeply.

Sunnier Days Ahead

I’m too excited about my breakfast and newly recovered fondness for food to stay in bed any longer. What I would sketch right now, if I were an artist, to give you a thousand words at a glance, is this.

My husband is in his robe, wearing the bed-head that makes me smile, his feet up on an ottoman, breakfast smoothie and iPad in hand. I’m at the dining table right behind him, my stout little black laptop (“It’s a BlackBook!”, they excitedly once informed at the Genius Bar), my organic golden-yolk egg-and-parsley breakfast sandwich, my mango smoothie, and my tea next to me, trying (somewhat successfully), to respect the morning quiet he prefers. My senses of taste and smell have stirred to life, and the numbing neuropathy and vibrating, face-plant-inducing weakness have receded enough to permit small adventures in the kitchen. My brain is chatty, animated, in high gear.

I realize that nobody cares all that much about what I’m eating or what it looks like in here this morning. But that’s not at all what this is about. They tell me that those who write or in some other way communicate and document their traumatic experiences as they emerge from them recover more quickly, particularly when they sense somebody is paying attention, so stay with me if you have a moment. And because key elements of it are already logged here, it’s primarily the roller-coaster euphoria that sometimes now emerges that I want to share today, my first steps coming out of the many-week-long, frightening, miserably painful stupor.

Also on the table next to me, I have a large bag of fresh parsley, which I’m stripping from its stalks to zip up into a little bag and refrigerate for convenience. (If you’re not a fan of parsley, Google its medicinal properties; you may quickly become one.) And invisible nor easily represented in a sketch, but equally real in my mind, are vibrant images of this meal making its way into my calves and thighs, ones that curve and move and function again, to carry me beyond the end of my building hallway and up a flight of stairs.

This post is about having turned a bend on a very narrow, hair-pin-turn-riddled, steep road scratched into the dark edge of a craggy mountain, and seeing fresh green in the valley ahead. It’s about feeling like a human being again. It’s about the million tiny things we take for granted every day until we lose them—waking up without wondering if it’s sandpaper you’ve slept on instead of soft cotton sheets. Waking up knowing you can go get your own medication instead of waking your partner to do it. Waking up hungry. Being conscious that your skin and bone marrow are no longer on fire. It’s about a feeling of confidence that I will not forever be prisoner to a poisoned and near-paralyzed body. It’s about a shopping trip for spring clothes with a friend who, like me, freed from an office cubicle by day, happens to be an outstanding and patient wheelchair navigator. It’s about waking up with a million want-to-do things in mind, things like a series of dinners to cook for the lovely human beings who have faithfully brought fresh-squeezed juices and home-made soups and smoothies and bowls of rice, or, for my husband, homemade chocolate chip cookies, beef stew and other heartier fare. Those who now, with my return to hunger, are happy to provide made-to-request roast chicken and mashed potatoes (thanks Mom!). My kitchen needs re-baptizing, and I’m eager to follow through just as soon as my legs will hold me solidly enough.

These words are an attempt to roughly translate images forever imprinted in my mind into language I can return to in the future.

An aside: it is, as always, a happy little hour I’m having with my lovely outdated little BlackBook. I’m currently reading Nahlah Ayed’s A Thousand Farewells, and it was a lovely little moment of kinship I felt with her the other day watching a YouTube clip of a speech she delivered a few years ago. She was using not a paper-weight sleek new MacBook, but rather a BlackBook identical to mine.

I miss writing, and working. The idea of getting back to it in the months to come is a lovely thought. I miss being busy, efficient, independent, creative, free, moving quickly to accomplish what it is I’ve set out to accomplish. I have, however, also resolved to slow down—there is immense value in the quiet spaces.

One more recent image for the record: I’m reclining in my usual spot on the giant jet-like sofa-turned-daybed in our living room. We have just returned from the airport with my adult son, who is in town for a two-and-a-half day visit, a couple of nearly unbroken days with his mom, his siblings, and his stepdad. I am on the couch though, not running around prepping food, serving wine, all of us busy and free to come and go at will. This time, however temporarily, the roles are somewhat reversed from the usual parent-child roles. We are together to support and cheer each other on. To add to the intensity of the setting, I am wheelchair-bound beyond our suite, and we discover that the building elevators are down. We won’t be getting out to dinner as planned. Will the kids survive this kind of compressed family time within these four walls? (And please, no fire alarms!)

Hearing my son’s hearty laugh though, I’m suddenly moved out of the heartbreak I’ve been conscious of in recent months. Pure, unadulterated pleasure reigns. He suggests we order take-out Indian food, for its glorious richness, as a remedy for wobbly, emaciated legs. I suddenly have an intense appetite, and it is so, so much fun. It is one of many such hours on this most rare and precious of weekends. We talk about cancer. We talk about their pets, their busy lives, their futures—my daughter’s business, my son’s and his partner’s corporate grind, my other son’s work as a Resident at Stanford. I’m so proud of them. Grandparents drop in for a visit. We view childhood movies my husband has put together for us, both technologically updated (credit to my brother) Super 8 clips from my childhood many years ago, and newer ones of my own still-young family in the 80s and 90s. We get to know each other in ways we hadn’t known, or had forgotten. We sing the crazy songs of that era, and marvel at the adolescent ability to remember foolish Boy Band and Spice Girl lyrics, dance moves, and movie sound tracks. We mourn and soothe each other, but we also laugh ourselves silly. I immerse myself in love and laughter; endorphins reign.

Dad

dad baby carriage

“I have to get my pacemaker replaced,” my father told me the other night on the phone, “the battery only lasts so long.” I, being strongly averse to needles and knives breaking my skin, immediately murmured an empathetic “oh no, I’m so sorry,” to which he responded with, “Oh it’s not a big deal, just a local anesthetic, and I can watch the whole thing on a TV screen. It’s more fun than going to the dentist or watching a football game.”

I laughed, and decided that his perspective may have a little something to do with things like having lived on potato scraps from the garbage cans of the elite when food was nearly impossible to come by in Germany all those years ago. Or with his beginnings here in Canada: a menial job, an utterly foreign language, dinner out of a can placed directly on the heat source.

He graduated to a better job, got married, and took out a loan to build his growing family a home, which he spent his evenings building, and which he paid off entirely in eleven years. He rode his bike to work in southern Alberta hurricane-strength winds and frigid temperatures. (Now, at almost 85, he still rides his bike around town.) He’d known deep, deep hunger, and, determined that none of his children ever would, he planted a garden big enough to feed an entire village. He taught us the joys of simple things: a sun-warmed fresh ripe tomato off the vine for a snack, sweet peas, crisp cucumber, corn-on-the cob.

On holiday Mondays, he and my mother took us all hiking at Waterton National Park, and, on hot summer weekends, on picnic suppers and to go swimming in the local pond to cool down. When I was ten, he bought me a bike, which I adored. In winter, he pulled us to church on a sled. Eventually he bought a Valiant, in which we went camping every summer after that, all seven of us piling in, alongside an orange canvas tent the size of a hotel and everything else we’d need for two weeks. We were sardines in the back seat, wedged in on top of sleeping bags that filled all available foot space, but we loved our time at the lake.

After he’d taught me how to drive that Valiant with its moody clutch, he once forgave me for parking it on a hill without putting it in gear or engaging the parking brake, landing it squarely in the branches of a tree while I was in City Hall taking care of something I now have no memory of.

He taught me to love pickled herring, dark heavy bread (which my mother baked weekly), potatoes drizzled with oil or butter, fresh garden vegetables. Together with my mother, he taught me the value of community and faith, of visiting the sick and the imprisoned. He taught me the value of hard work, of honesty and integrity. (For as far back as I can remember, he’d refuse a glass of wine based on principle: for his insurance rate or something of that nature, he’d said he didn’t drink, so he never did, the only exception being the tiniest sip of communion wine at church.) He taught me the beauty of books, classical music, hymns sung in glorious four-part harmony. He taught me that there is a story beyond our own, and showed me what it looks like for a man to love a woman unfailingly and deeply.

For this, and much more, thank-you Dad; I love you and happy Father’s Day.

The Rhythms of the Universe

alberta springA few weeks ago, with early morning insomnia, with psychic reaching and stretching, longing for my creative muse, I remember: the moon is dark. Like all life, we belong to the rhythms of the universe.

Since then: suppers with friends, a birthday dinner with the kids, a number of long intimate conversations. Love. Reasons to celebrate. A brightly-coloured and exuberant parade. A shared and perfect Reuben. The Fault in Our Stars, walking home afterwards holding my husband’s hand tightly, desperately willing my own cells’ propensity for runaway replication not to return, willing the universe to be kind to us, to our love, to the children.

On Sunday: sunshine on my feet, a breeze on my face, my book. A hike, and a picnic for two: croissants with chicken and cucumbers, an exquisite bottle of Viognier, a bar of dark cranberry chocolate. Afterwards, deliciously fatigued, and satiated, a bath, open doors and windows, breezes, no mosquitoes, the sound of voices outside, neighbours enjoying the early summer weather. Perfection.

Yesterday, drenching rain. Tired again, but in our wake, my daughter’s and mine, gleaming fridges and stoves and tiles, a sense of achievement, and now, not one but two deeply cleaned apartments, the old and the new. A hot shower. Dried out fingernails and skin (I never remember gloves), body butter to soothe. A hot cup of coffee. A terrible view, but flowers on the balcony, and the scent of rain.

A nearly full moon in the sky tonight. Another cycle of love and creativity almost complete, another cycle of aching backs and hearts and feet, of comfort and love and laughter and music and pleasure. Another cycle of the ordinary and extraordinary, all winding down again, preparing to shed, to take a long slow breath, take stock, and start all over again.

A quiet evening. Gratitude. Then, a phone-call, frightening news for a friend. Stabbing fear, railing against, tears. Outside, another drenching rain. In the morning, thick fog, much thicker than the one blanketing the ground.

Mother and Child

spring 2014I know a mother who—through the horrors of war and against all odds and despite the deep longing she surely carried for all that was familiar and safe—nourished faith and life and went on to carve the survival of her family out of the earth. She, like mothers all over the world, siphons from a bottomless well of love to bring nourishment and protection through all kinds of weather and erosion, and time and time again, season after season, regenerates and renews her soul to keep doing it. Thank you, Mom; I love you.

I know a mother who was unable to protect her little ones, a mother who saw them dispersed like drops of rain in a brutal wind. She agonized over where they were until she was finally reunited with them, only to have her infant daughter cruelly taken from her after all. And then she too left home behind to be with her surviving children in a country whose customs and language she never did fully adjust to. Thank you Grandma.

I know mothers who never saw the faces of their babies, but love them as desperately as have mothers since the beginning of time. I know one who carried hers long enough to know it was a little girl that left the hole in her heart.

I know a mother who lost the father of her children when they were far too young, and went on to fill the role of both mother and father for many, many years. (Her children turned out pretty awesome; I married one of them.)

I know mothers, many, who fan the dreams of their children, watch them chase these dreams, and then, across miles and oceans, feel them present in their bones day and night.

I know a mother who has carried the soul of her son in every cell of her body every aching day since the day he took his life. I know a mother who lost her firstborn to another kind of thief, and who carries this too in every cell of her body. And now this intuition, this invisible umbilical cord, appears to be measurable—science has discovered the cells of our babies present in our bodies, even decades after giving birth.

I know a mother who takes her daughter’s unrelenting, seemingly senseless and unending pain, and turns it into compassion for the most shattered and lost among us.

I know a mother whose joy in her severely handicapped daughter is louder than her heartbreak, and whose love makes the universe burst with pride and joy.

I know a mother bearing the pain of watching her vibrant young daughter live with the thief that is cancer. I know another whose maternal energy is the most potent force in her own war with cell division easily tempted to run amok.

I know a mother who left her dead husband and children behind in her war-torn land to bring her surviving daughters to safety in a country whose customs and language and winters make her ache daily for home.

I know a mother who is mother not only to her own children, but also to the many who come to her with their need. She is the queen of empathy and wisdom and shining love into dark unknown corners.

I know a mother who loves the earth deeply, and who earlier today, whispered the name of a young woman she has never met with each seed she planted in the earth, allowing all that is painful right now for another woman’s daughter to ride her every breath.

And I too whispered your names with each word I wrote just now, and send my love—Mom, Grandma, daughter, sister, friend—all of you who channel love, all of you who know deeply we are all connected, made of the elements, the brightest of stars, Shining Love. Come meet me by the river one night soon, as soon as it gets warm, and we’ll stand barefoot in the grass, and allow Mother Earth to hold us for a few minutes.