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?

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Hovering

hard, loud, early morning rain outside my open window
a long, crashing rumble of thunder;
be warm and dry and safe out there, dear child

and you, you heart-broken one,
frightened by the intensity of the grief,
the endless dark tunnel,
try to remember you will emerge
to see the sun again
and learn to live in the space between dark and light

the blue skies of childhood may not return
but blue skies will
the bounce in your hamstrings may sleep a long night
but what returns will be enough

the body remembers

it remembers both the joy and the horror
and it doesn’t know the difference
between the quiet imagined story
and the louder, more apparently real one;
it will respond to both

so tell yourself a story

and remember the hot summer sun,
being mesmerized by the iridescence of the dragonfly

poised and elegant, she hovers,
forward and backward,
upward and downward,
side to side
hovering, she sees past illusions
to the depths

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.

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.