Joanne

Joanne, dear Joanne. We miss you so much. It’s almost been four weeks now since you left us, and I want to tell others what I told those who came out to St. Albert to mourn your moving on. I feel the injustice on your behalf all over again—we have each other for our grief, but you agonized privately, stoically, courageously, and graciously over yours. We know how badly you still wanted to be here.

It was a beautiful service. I’m pretty sure you would’ve liked it a lot. Lindsey and John did a wonderful job of choosing the photos and music and words that told your story. Even played Neil Young singing “Somewhere on a desert highway, she rides a Harley-Davidson, her long blonde hair flyin’ in the wind,”  and somewhere between the beginning and the end of it I soaked every tissue in my bag. You were—always and at every stage of your life right up to the end—beautiful. Jo

But I think you know it was a nice service. You weren’t there of course, not there in the way we wanted you there, smiling and hugging and talking and all those good things, but you were there. I had an image of you so comfortable again now, and happy, perhaps even dancing in the ether somehow as you looked on.

I have a plane to catch today, and woke up super early—5:30—in part because I wanted to have a chat with you. You’d understand, even though you were always more likely to be awake into the early morning hours than wake up then. You knew insomnia, and you knew the feeling of having run a marathon when it was actually only walking the tiniest fraction of one that created the conditions for an early morning hour leg cramp.

I went shopping for a dress yesterday, and I missed you. I had to take advice from the sales associates, who, while great, weren’t you. You would’ve been proud of me though—I walked the entire length of the mall and back—West Edmonton Mall, no less—and paid for it with only the one little leg cramp.

You always were a better shopper than I was. Less impulsive and far more discriminating. And generous. Last year, when for a while I couldn’t walk more than the distance of a very short city block, you not only quickly became the expert on which shopping malls had the best wheelchairs, you also got to work sharpening my fashion sense. I’d be looking at a floral dress or some oversize casual comfort thing, and you’d raise your her eyebrows just a little as if to ask “you’d wear that?” and then go on to suggest something a little edgier and talk me into it. Had we been a little stronger, you might’ve tried to talk me into a Harley and some chaps.

You did this wheelchair thing for me even though on some of those occasions you struggled to find enough strength yourself. It was the blind leading the blind, though we were anything but blind.

You were a constant, loyal, brilliant, quiet, strong and lovely light in our lives. I didn’t know you for as long as some of your friends, but I feel so, so lucky to have known you at all, because it was always and only a joy, an honour, a privilege.

It was four years ago we met, almost exactly, remember? With a Facebook chat, at Michele’s suggestion. It was the loveliest of gifts she gave me, introducing me to you. That first coffee, which lasted two or three hours, bonded us—in part over the shorthand cancer survivors know, but also simply because there was so much more there between us to bond over.

We’d been worried about meeting, we discovered. You worried you might become locked in with someone a little crazy, which, it turns out, was perhaps a legitimate concern. Both of us worried a little about wading in with another cancer survivor, afraid of the potential loss there. But coffee visits quickly became lunches at the Tea Place, and eventually anything, anytime, with or without our husbands. Sometimes one or the other of us would be too sick to make it for a week or two, and those were hard. We worried about each other, and felt bad when we were unable to help and be there.

I knew from the start that you were way cooler than I’d ever be, with your quiet, sharp dry sense of humour. And I knew you’d be a rare kind of friend, the kind where affection grows quickly and profusely and becomes deeply rooted.

I quickly saw your wonderful capacity as a mom to Lindsey, your deep, happy, proud love for her, and your deep, deep love for John too. I saw that you understood my husband’s humour—which is never a given and really an essential ability in my friends—and I quickly learned that you were his match that way, that you knew how to deliver irony as quickly and expertly as anyone.

You were determined and generous, always ready to help, to bring food, to listen, to find things to share a laugh about. You made it to my birthday party the summer you were trying to survive the beating radiation delivers. And you made it to the-grandkids-are-in-town party last fall too, when your health problems were really starting to snowball. Loyal and kind and quick to put the needs of others ahead of your own—that was you.

Your successes in the face of the odds stacked against you speak to your determination and intelligence. There was nothing you wouldn’t research and be willing to sacrifice to be healthier, stronger, and fighting for your life. You defied those awful odds they gave you for a nice long time, and you did it on your terms, maintaining an amazing quality of life for a good long part of that. But cancer is a still a determined and nasty thief.

Both of us convalescing off and on for much of the past few years, we often swapped Netflix entertainment ideas, and I soon learned that underneath your competent and contained social worker and biker persona lay the most tender-hearted human being. Almost embarrassed to admit I wept my way through endless seasons of Call the Midwife I was comforted to learn that you had wept your way through them as well.

Always, your top priority was Lindsey—you wanted her to have all the parental support she needed to get a post secondary education, to have a place to land, a home. And near the end, you determined Lindsey would finish her term, cancer or no—and you succeeded in hanging on to facilitate exactly that.

Recently, when it became apparent just how grave things had become, I felt crushing sorrow. Still we hoped. And nearly right up to the end, you’d make us smile when we’d visit, reminding us that we weren’t to be taken too seriously because we’re crazy.

Lovely, lovely Joanne. You’ve left an enormous hole in our lives. Our hearts are broken, but we will, as you and Lindsey have so beautifully engraved into your skin, carry you there forever.

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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

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.

 

What We Want

What we want is to feel alive. To have an appetite. To have muscle. To move. To feel things, smell them, touch them, see them, taste them, hear them. To know safety and comfort. To have clarity and purpose. To know love, beauty. To feel empowered. To have hope.

There is, by the way, no such thing as false hope. Hope always goes against odds, and is exactly that—believing in and focussing on possibility.

My chemo this week threw me for more of a loop than I’d planned on, so — unbearably self-pitying and bored with the living room this morning — I ventured out. The melting snow and bright sun felt mocking, not soothing. This is the part we’re loathe to admit, or write about when we find ourselves in the crucibles of life: we despair. We do our yoga and our meditation to maintain resilience and optimism, and tap into an unexpected well of rage instead.

So out I went, into the bright sun, not knowing where to, thinking perhaps I might capture some beauty with my camera, or take a peek at January sales. Strike, and strike.

I drove by the long line-up at Edmonton’s Bissell Centre and was reminded of this fundamental truth: no matter what our station in life, we want to improve it. Mittens, a hot drink, a jacket.

My fatigue won out. I turned the car into the local grocery store and picked up some sushi, fresh raspberries, and the carrot muffins I’d been craving. (Yes, I still have an appetite, sort of at least, thankfully.) I looked at the fresh flowers and toyed with indulging myself, but they turned out to be too much to carry.

It wasn’t exactly what I wanted, my outing, but neither was it in vain. I remembered that I’m not alone, that bad times pass. I remembered the angels that minister to my physical and emotional health. I remembered to tell them thank you. I remembered my friend, in her own current hell, and sent her my love via the wavelengths of life that connect us all. I remembered the love of my parents, my husband, my children. And as I left the parking lot, I received a text from one of them. Medicine for my spirit. Their love and joy are baptismal waters for me, always.

connie child 5

(Yup, that’s me, back in the age of innocence. There was a little girl, who had a little curl, right in the middle of her forehead…. I’m trying to remember the feeling.)

Like a Wobble Doll

I’d fallen into a short, weird sleep just before an appointment I had last week, and was groggy and out of sorts when my alarm woke me. My husband, working from home, offered to give me a ride.

“I can drive myself,” I said, hearing an edge in my voice.

“You’re groggy, and upset, you probably shouldn’t,” my husband said, “plus it’s five minutes away and a ride will save you parking fees.”

“I don’t care if I spend $1000 dollars on parking, or whether or not I arrive alive,” I came back.

These are strong words, unsettling to hear from your own mouth.

I can be a bit of a pill sometimes, or, as my five-year-old long ago once put it, a bucket of pills. Not that I’m the only one in my world capable of displaying unexpected pill-like behaviour—it’s as common as the common cold. But perhaps being a slightly harder-to-swallow pill is unavoidable after so many endless months of swallowing buckets of pills. I am, after all, having potent medicines pumped directly into my veins every week, medicines which put essential benign cells under constant fire as malignant ones meet their destruction. I am working long overtime hours on a confusing and challenging job.

These days, I get sore hand muscles from carrying a grocery bag a little too heavy, or from holding a pencil a little too hard. These days, some of my veins feel like someone has threaded a hard knotty piece of twine into them. These days, I’ve had headaches to trump all headaches, which is something of an adjustment for someone who’s always been proud of not really knowing what a headache is.

wobble dollI sometimes feel like I’m a weighted wobble doll, a matryoshka doll, a daruma doll. I get knocked down, bounce back, wobble around, find my balance. Repeat. But then I think simply being alive is to get knocked down, wobble around, and then find our balance again.

I’ve given the cellulitis the boot, and fully plan to continue taking back my space in other ways too. As the single long-time and respectful resident of this body, I believe I have some rights, and these squatters, thinking it okay to move in uninvited and then charge rent rather than pay it, all the while multiplying as prolifically as bunnies—they are going to continue to hear from me, more assertively than ever.

Despite the punches and punching back, it’s been a lovely fall, warm and color-rich, sunny and dry. I’ve enjoyed an impromptu couch-surfing stay from my daughter—seeing her in the mornings again, having some creative feminine energy in the house, bonus conversations, a bit of a rerun of days long ago slipped by. I’ve enjoyed naps in the October sun, and visits to the sunny and oxygen-rich pyramids of the Muttart Conservatory. I’ve enjoyed visits with the kids and grandkids, and visits with friends, and lovely everyday gifts from those just here for me with things like an apple fritter, a story to make me laugh, or an enthusiastic declaration of “I’m going to go hug these lab results”.

At a week-night supper my mom cooked for us last week the gifts were of two kinds, the very tangible, and the less tangible. There was the lavish spread: a large platter of delicate salmon and vegetable side dishes enough to cover every ounce of space on the table. And then there were the goodbyes at the end of the evening between my 86-year-old dad and his sister, and my mom and her sister-in-law. The former playfully and laughingly slapped each other around a little, the latter—two women surely not even five feet tall—looked affectionately into each other’s eyes, touched each other’s cheeks, and got verbal reassurance the other was okay.

I had a glimpse of truth in that moment—we live for beauty and meaning and love, ever more so as our bodies begin to betray us. And these things sometimes lie in places not readily evident in our busy lives. My many months of underachievement are no less meaningful than those of the brilliant and energetic young adults looking for better cancer treatments. We are so much more than what we can produce and measure. We are what we value and nurture, valuable simply by virtue of being, by the fact that we love.

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.

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.