Bereaved

I’ve been silent. Unable to get the crumbs to cohere into a ball that might yield a shell.

What has silenced me: Chemical injury to my normally serotonin-producing abdomen. Oncologist-powered words carrying grave threat. Bereavement.

The word bereavement comes from Old English bereaflan, meaning “to deprive of, take away, seize, rob.’ It happens to everyone, but when you’re in it, you feel alone.

How I miss you, my once-strong body and mind. How I miss you, my vision of a happy pain-free future.

How I miss you, Jo. And you, dear friends, all of you I haven’t been able to see all these weeks lying around waiting to feel better.

Vulnerability is strength, they say. We must be a pretty strong little tribe around here now then. It’s been a shivery wind. Tonight, I stood calmly near a gorgeous old vase I own, and told my husband I could easily fling it through the TV screen and not bat an eye. I could’ve. Clonazepam to the rescue.

But the scan news I’ve been waiting on is good, or at least not terrible. I’m living with my cancer. It’s no worse than it’s been for the past two years, for all my oncologists terrifying words last week. So now, to focus on patience. I’m a terrible patient. The thing to remember is that when you want something very badly, you need to be willing to wait. The other night I read about reindeer moss. It can survive almost anything the world throws at it. Helen Macdonald, in H is for Hawk, says it is ”patience made manifest”. You can freeze it, dry it, it won’t die. It goes dormant and waits for things to improve. I may need to get my hands on some.

The other night, I reached out to scratch my husband’s back, and felt an sudden warm wash of light and music, and for a moment, just from the touch, I felt as though I’d become the grand piano and the light. And another time, he kissed me, and I became, for a split second, an exquisite, strong bolt of pure light and love.

Little trips of hope and life?

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

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.)

Malignant Metaphor

malignant metaphorI have cancer, and I loved Malignant Metaphor. I loved Mitchell’s objectivity and honesty. I love those who can plow through reams of science and pull it together in a way that pokes holes in some of the unproductive myths we assume to be absolute truth. And I especially love it when that research yields a perspective that is in the end calming and encouraging rather than alarming.

I loved that she respectfully discusses our fear of cancer. She reminds us that it is our nature to construct a narrative when we’re afraid. “Random is not emotionally satisfying,” she writes. So we look for causes, cures, and metaphors that comfort us. We construct myths, both helpful and otherwise.

In a short history of fear, Mitchell outlines some of the major terror-inducing illnesses of our past. The Black Death. Leprosy. The Spanish Flu. Tuberculosis. TB, responsible for a quarter of all European deaths in the 19th century, was seen as evidence of moral weakness, of lack of ambition, of being an overly sensitive romantic. How’s that for an unhelpful myth?

And now, cancer. If you get cancer, you’ve got faulty genes. Or have had a bad lifestyle. Or have the wrong attitude, or the wrong personality.

The genetic link, it turns out, is a small one, responsible for perhaps two or three percent of cancer cases, she says. And with some obvious exceptions, lifestyle correlation has been inflated also, and doesn’t hold up to scrutiny. In addition, the idea that we can prevent cancer yields feelings of shame and guilt when we fail. Did I eat too much meat? Too much sugar? Did I sleep too little, exercise too little, work too much, drink too much? Not likely significant factors, says Mitchell. Did I allow myself to feel too much stress and anxiety? Suppress too much emotion? Allow too much negative thought? Again, no. The findings of a meta-analysis on personally types found no higher risk in those characterized by the suppression of emotion, pessimism, depression, and timidity.

The commonly used war metaphor falls shorts too, in Mitchell’s eyes. War is violent, implies a death toll, and is guilt-inducing. If I lose the war, was I weak? A poor fighter? Guilty of choosing the wrong course of action? “I think the brutality of the cancer metaphor saps our society of some of its productive vigor,” she writes. “Guilt and blame and fear are paralytic emotions, a black hole for energy.”

It may be a counterproductive and malignant metaphor, but we’ve come by it honestly enough. The battle with cancer clearly can be a matter of life and death, and the origins of chemotherapy itself lie in the use of chemical weapons—the original team of cancer drug researchers at Sloan-Kettering literally originated in the US government’s Chemical Warfare Service after World War II.

And though treatments and management of side effects have improved with time, and researchers now often look to the plant world for treatments, it can still feel very much like a war. Taxol, the drug which comes from the bark of the yew tree and which saved my life five years ago, nearly took it earlier this year. It is a potent therapy, and wears the label of weapon well.

As much as all this is true, I too am looking for a better metaphor. Some of us live with cancer for many years, much as others live with diabetes or high cholesterol or other chronic disease. I sometimes view it as more of a boxing match, one in which I occasionally get beat up, but also patched up again, and in which a defeat doesn’t need to spell death.

As to looking for fault, I’ve quit. The reality is that with a few exceptions, cancer is random. We have a long history of making up stories in the face of fear and poorly understood phenomena, stories that comfort and calm us, and that may or may not carry an element of truth. And the reality is that it has always been easier to hold victims responsible than to take responsibility as a society, which in this case would demand research on larger environmental causes that call into question an entire system of production and manufacturing.

Mitchell is a science writer, and it shows. She confirms my own inclination to take fund-raising messages with a generous shake of salt. Cancer is not, she says, when you adjust numbers for age and population growth, more prevalent than ever. And though it can still be deadly, survival rates for most cancers have increased.

Cancer is not happy news, no, but there is reason for optimism. We have a long history of facing challenges like this productively, and every reason to embrace life and health enthusiastically even in the face of current cancer realities.

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.

Serendipity

It was a morning for feeling needy and pathetic and nearly too proud to permit any kind of love directed my way. I’m still not used to operating at half-battery, and it can make me bristly. Feeling half-productive, half-fun, half-useful, half-decent, half-human can make me decide I’m utterly unworthy. Ahead of me was an afternoon of chemo, which of course was the reason for the bristles, but it also offered up an unlikely and happy little coincidence.

Before the serendipitous conversation could happen though, the one that generated the first genuine smile of the day, I tried befriending my misery by stepping into the role of observer, standing back from my emotions a little, trying simply to see them without judgment, and perhaps even switch the energy driving me to a more neutral and advanced part of my brain. Beneath the surface layer of self-reliance that was telling my husband I didn’t need him to accompany me to chemo, I soon saw several layers of anxiety—fear of being viewed as needy and weak, fear of the impact my being sick has had on what I have to offer as a partner in my marriage, and fear of things not going well on this day, fear of pain, fear of the future.

I’d gone out for a bit to return a poorly chosen bathmat and had a little time before my appointment, so I stopped for a cup of tea and watched this internal landscape of anxiety for a while. I didn’t judge it (anxiety is, under these circumstances, they tell me, completely normal), but I did give it the boot. Nothing personal, just tired of it for the moment. We’ll have tea again soon enough. Not judging is important, but so is perspective, and perspective only comes with sitting back, watching, listening, and deciding what is most necessary for the moment.

Watching the chatty anxious thoughts retreat, I began to envision being assigned the best nurse and having the smoothest infusion ever. (Not that envisioning it is any guarantee, but it is calming, which is never a bad thing.) I began to remind my body to accept and welcome the drugs that kill rogue cells, remind it to let them do their job before kicking them out, and remind it that it has an almost tireless ability to repair essential innocent cells caught in the crossfire.

So an hour later, when my husband told me on the phone he really didn’t want me going to chemo alone, I agreed to swing by for him on my way to the hospital.

We arrive, and my nurse introduces herself. I miss her name the first time around (memories of painful phlebitis distracting me again), but I like her face; it is warm and exotic and open. In response to her “how are you today?” I return a half-smile, and a half-hearted “fine”. A C-plus, maybe, if I’m going to be generous. She’s warm and attentive though, and wonderfully skilled—no retries on getting into my vein today—so I try to salvage that C-plus. I manage a better smile, and tell her a deeply felt thank you. She’s humble, and shrugs it off as luck of the draw, that on another day that same vein may not have been as receptive. I ask her if she enjoys nursing. She does, though she was terrified of needles and blood and starting IVs when she began her career. Now, just a few years into it, she does nearly a dozen a day in the chemo daycare unit.

I tell her she’s good, and she makes me do the requisite name spelling and birth-date recitation.

“You have the exact birthday my mom does!” she responds, smiling widely. “Same date, same year. And mine is three days before hers, on the 16th.” Why she told me that I don’t know, but it’s funny, because not only do I share her mother’s birthday, my daughter share’s hers.

It’s just a couple of dates, but it’s more than that. The gentleness with which she handles my chemotherapy makes it feel like my daughter is sending me her love, which she probably was.

Another patient on the other side of the room was surrounded at that moment by almost the entire remaining nursing staff in the unit, having a serious reaction to the same drug that had caused mine last winter. Feeling a powerful wave of compassion and empathy, I remember the practice of Tonglen, which others have done for me, and for my daughter, and so, as the nurses do their job with the Benadryl and other tools at their disposal, I begin inhaling this woman’s distress, exhaling relief and compassion and empathy her way. It’s an active, physical, non-desperate form of prayer that I love.

The nurses, from where I was watching, were care and compassion personified, professionals in every way, but human beings too, who understood that it is the little kindnesses that matter as much as anything during a crisis like this. The patient stabilized, and my session, with a few adjustments, went well and ended. On our way home, we stopped for coffee and a muffin on a tree-lined street patio, and though I knew that the effects of my treatment would gather momentum as the afternoon unfolded, it was a lovely moment.

In the days leading up to this one, I’d felt a deep fatigue, an effect of my chemo-depressed blood counts alongside an intense week of extended family gathered from all over to celebrate my parents’ 60th wedding anniversary. So much stimulation and emotion packed into a single week. Cousins and aunts and uncles I hadn’t seen since the last funeral I was able to attend, siblings and nieces and nephews I hadn’t seen in even longer.

In the two weeks before the event—before the mixed-bag verdict this week that my treatment is working but that I’m definitely in for another three months of it—it was a happy time of planning and anticipation for this reunion. It was a time of large and lumpy inflamed veins calming down and receding into the background thanks to some wonderful medicine. It was a time of late-summer outdoor lunches and suppers, of new harvest potatoes and peach cobbler, of desperately sad refugee images on our TV screen, of bike rides and sunflowers, of warm, warm winds turning to crisp mornings, of hot showers, of crumbled frozen oatmeal squares, of laundry, dust bunnies, recycling and all other things quite ordinary, and one evening, sitting in the backyard of some friends, an astoundingly full super-moon.

Full, that’s what keeps us going. It’s been a long haul. Nothing compared to the long difficult paths many of you are on, but still—nine months now, and it’s the love that keeps me going.

I plan to settle in for a few days of recovery after this week’s treatment. Sleep is the perfect escape, but always elusive during those first few days. I wake shortly before 4AM. My husband is awake also. We toss and turn for a little while; I read. Then we talk. About our reflexive protections, how we try too hard, or cling, or shut down when we’re terrified. At 6, I’m hungry, and get us both some yogurt. I’m still hoping it might buy me another hour or two of sleep. I read some more, which is usually foolproof. I doze a little after 7:30, wake at 8:30 with a start. My feet hurt, it’s time for my medication. A new day. The mirror tells me my cheeks are flushed, a side-effect, but Day Two is always infinitely better than Day One. Later in the day, I get on my bike and visit the queen of energy medicine. She looks at my labs, and tells me I’m rocking this. It’s a good day.