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.

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

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.

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.