Flashbacks

How often in your life have you turned some corner—perhaps in a city you visit rarely, or when hearing the voice of a friend you haven’t seen for years—and bumped into a version of your old self. Suddenly you remember—and can almost feel—the twist of anxiety, the bellow of laughter, the fears and delights of the person you once were.

November is a month for flashbacks for me; it’s like walking down that street again and again. I remember last November well. It was ripe with new possibilities.  Sometimes the pictures come up on my screensaver from that time: carefree blonde curls, a ready smile, and the undiscovered tumour ready to change my life. I have such vivid memories—of conversations with clients, long plane rides nestled next to the book I was writing (now finished and in galley proofs), soaking in the hot tub with Michael and the kids. As I peer into pictures or slip into memories, it comes as such a shock to feel so absolutely normal just before everything turned on its head. I think of all the events in life that can do that: the month before the car accident, the week before the earthquake, the day before you bumped into the stranger who would become the love of your life. We are on the cusp of unexpected and shocking change in each moment, and in nearly all those moments the conditions don’t align for that change to take hold. But in the moments when we get the phone call, or have the conversation, or step off the curb into disaster—it is not just our future lives that are refigured, but our past ones too.

Last week I had the last of the reconstructive surgery. A minor, out-patient event in the same hospital where I had my major surgery in January. As I checked in at 6.30am, I could see my former self, suitcase in hand, checking in for the most frightening surgery of her life.  I was struck suddenly by how brave I was then, how terrified (hands shaking so hard it was difficult to sign the admissions papers) and how matter of fact. I remember the tense jokes with Michael and Rob, the room with a view of the car park, the marks on my skin indicating where the cuts would be made.

This time there was no suitcase, no trembling hands. The hardest part were those shadows of that former me around each corner. But oh, what a surreal experience to be awake while people cut and sew my very own body, to hear the casual conversation, chatting about the weekend and the weather, the surgeon singing to Ed Sheerhan on his side of the curtain, while I sang softly on mine, our faces inches away from each other. I was me and also not me, awake and not awake, the star of the show and a bit player.

In the recovery room after of the surgery I heard Stan talking to someone going in, encouraging her in his soft, matter-of-fact murmurs. I heard her tight cheerful laugh, and heard myself in those notes. And I suddenly realised how little I knew then about what my future could be. I didn’t know then what terrible news I could have gotten after the surgery (I could have had triple negative cancer, or many lymph nodes infected, but I didn’t). I knew I was afraid, but I didn’t know how much more there was to be afraid of. And then, along with the sadness of what has been lost, I have the most astonishing sense of gratitude.

Every day there are horrible things that don’t happen. Each day that our life stays sort of ordinary and regular, we don’t notice how lucky we are. We don’t notice the bad news that never came, the accident we didn’t have, the tragedy that never arrived. We should be singing in gratitude each commonplace day. I parted my hair yesterday for the first time in eight months. I was near giddy with the delight of it. I got a papercut and realised that it wasn’t dangerous (as they are during chemo) and I got a strange little surge of joy at the thin line of bright red blood. I agonised over the decision we’re trying to make now about where to live next year, and in the agony and tedium of it, I felt this bubbling spring of happiness—look at the choices we get to make today! We are alive and together and meandering through the days of our lives. Every day we get to wake up and look out at a world that can be so beautiful, every day we climb into bed and set the alarm and look at our calendars for the next day, every day we are breathing and alive—these days are miracles. It is so easy to forget that the ordinary days, because they are so common, are each precious jewels to be strung together on the necklace of our lives.

An awareness of the horrors that could await me might make me afraid and unhappy—and I admit that some days I live in that space too. But the horrors that don’t visit us each day could be a renewable source of energy and exhilaration, a reminder that the ordinary love and work and laughter and tears of our ordinary days could become extraordinary in the face of a coming disaster. Or we could make them extraordinary just by realising that there was almost no chance that we would be here at this moment having this experience, no matter how commonplace it seems from our current perspective (think of all the tiny choices that could have gone a different way and made it so that you were never born, or so that you had a totally different life). We could tap into the spring of joy that invisibly surrounds us, like the oxygen we take for granted. We could run into the shadow of our former selves on a street corner or a hospital corridor, and we could flashforward to now. Because right now is all we ever have: the feel of the sun on our backs, the scent of coffee on the stove, the soft snoring of a dog curled up in his bed.

Or, as e.e. cummings said it better:

"i thank You God for most this amazing"

e. e. cummings

i thank You God for most this amazing
day:for the leaping greenly spirits of trees
and a blue true dream of sky;and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun's birthday; this is the birth
day of life and of love and wings:and of the gay
great happening illimitably earth)

how should tasting touching hearing seeing
breathing any—lifted from the no
of all nothing—human merely being
doubt unimaginable You?

(now the ears of my ears awake and
now the eyes of my eyes are opened)

 

Shadows

Yesterday I had my follow up appointment at the hospital to let me know what was next for me in the public system. I walked into the hospital where I had had that miserable appointment with my oncologist before chemo, the one where she frightened me with the potential proximity of my death in a way that left me gasping for breath. I felt a part of one of those time-lapse pictures suddenly. Me, six months ago, my curly hair around my shoulders, my surgical scars still red and angry, my eyes wide and hands trembling at the news about chemo that was in front of me. And then leaving the hospital that time, the doctor’s casual line about a 10-15% chance of metastatic cancer already in my body ringing in my ears, the possibility of a much closer death an unhappy companion.

And then there was yesterday. Chemo behind me, I walked in with my short hair and still failing nails (two gone and four more loose and the most unusual shade of  green).  We joked with the doctor there (not the same one) and he laid out the next steps in my care (“other than tamoxifen, all we really have to offer is surveillance”). We talked, bloodlessly, about recurrence—local and metastatic—and he gave the common doctor line: “Maybe you’ll get lucky and have the cancer behind you for good now.” Let’s hear it for luck--and eating no sugar and taking cancer-killing supplements and drinking yummy cinnamon green tea. (Although I have good reason to remember that luck comes in two forms because earlier in the conversation, talking about my age and lack of any contributing factors about getting cancer, the doctor had said, “Most breast cancer is just bad luck—you just had yours earlier than most women do.”)

 

Perhaps more than the short hair and icky nails, though, the biggest change as I walked into the hospital was that the shadow of my death walks alongside me now. During the whole experience of the diagnosis and the surgery, she was ever closer, and each of the significant dips of mood I took during that time were about coming to terms with the fact she might be closer than I had ever imagined. It wasn’t until that terrible appointment with the oncologist, though, that the shadow of death walked right next to me, impossible to shake off or relegate to a more distant threat some years hence. I stumbled out of that hospital six months ago with her clinging close, and she has not left since. And the weird thing is that I’ve come to value her presence in ways I could never have foreseen.

We have so much language—poetry, meditations, exhortations—about making the best use of the present, being fully in the moment, living your life to the fullest. Carpe diem and all that.  I would have said I lived in that way already, and to a strong extent I would have been right. I have really been grateful, have really loved the people and landscapes in my life. But when the possibility of my own death walks close beside me (as it could always have—it’s just probability now that makes it more visible), each day really does have a different meaning.

Death is terrifying. Without a sense of an afterworld, it is a blank void, marked only by all that is gone. And it is endless. Even now, months after my friend Nicki died, I find myself suddenly thinking, “Nicki is still dead today.” Every day she’s still dead. Death is like that—every day. Yesterday I found myself missing my grandmother and somehow surprised that she’s still dead after a decade—hasn’t it been long enough?  I have found myself exhausted and overwhelmed with sorrow at the thought of all that I’ll lose when I cross into that other side. But death is also a core piece of what it means to be human. Our lives are defined by death and informed and shaped by the distinctly human experience of knowing what is ahead for us.

Somehow I have made an uneasy peace—friendship even?—with the shadow beside me. While I still slip into terror from time to time and get lost in the gaping blackness, my experience more often is my sense of gratitude for the light each day. I find myself overcome with delight at the feel of the wind in my short hair, the sound of Aidan’s laugh, the curve of Naomi’s ear, the warm sleeping presence of Michael when I wake in the night.  I am nearly giddy with joy after a fantastic workshop, or a late night conversation with a dear friend or when I nuzzle my nose into Dolce’s fur. I am almost singing—can you believe we get to live, even for the blink of time we’re on the planet? Can you believe we get to love each other? And to smell freesia in the spring? And to be warm and dry when the rain lashes and the wind howls? I feel the blessings in my life running like warm sand through my fingers, piles and piles, windblown and glittering in the sun. I have written about the ways cancer makes things bittersweet and it’s still so, but ahh, perhaps in my mostly sugar-free state I have come to relish every taste of sweet in the bitter. I don’t know whether death will walk beside me for four years or forty, but for today I am grateful for the light her shadow casts.

(Pictures today are of the many beautiful places I've been in the last few weeks: the hill road at dawn, with Michael at Cirque du Soleil, ducklings in Adelaide, and a rainbow over the Sydney Opera House. What a life!)

A letter from the other side for a woman facing chemotherapy

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 Dear Friend or friend of a friend,

I remember the day I found I would need chemotherapy. I had slept in a reclining chair, still too sore from the mastectomy to sleep in a bed, and I woke up before dawn to read an email answers to a query I had send out: If there’s no cancer in my lymph nodes, why would my surgeon have said he thought I should probably have chemo? A friend of a friend of a friend oncologist sent me the survival rates for woman my age with a tumor my size and no lymph involvement. Chemo added 12% to the 10 year survival rates. 12% greater chance of cheering at my kids’ graduations, of holding a grandchild, of writing another book. I felt the darkness close around me and I had to get out of the confines of the chair and the bedroom and into the light. There was apparently this big part of me that had thought that the mammograms and ultrasounds and MRIs and biopsies and surgery were the whole journey and now I could just heal and go back to normal. Suddenly it looked to me like I had hardly begun to fight the cancer.  I know every woman is different and your chemo experience will be yours, but still, maybe if I can tell you the things I wish I had known when I began, there would be something in it for you. So here goes—ignore everything that isn’t helpful.

I was terrified of chemo. God our images of it are awful, aren’t they? And ironically, most of the images have to do with being so sick, the nausea and vomiting. It seemed to me that this was the symptom they cared most about getting rid of, though, and they were devoted to my not feeling sick in that way. I took the various anti-nausea meds they gave me, but in the smallest doses, and I was never really sick. (One trouble was a side effect of the anti-nausea meds—constipation. After the first round I drank “alpine tea” religiously as soon as I got home from chemo. Three cups a day while I was on the anti-nausea medication. After the first round of learning it the hard way, this was all good.)

I was disconcerted about the ways I couldn’t see out of the chemo period. I can’t remember the last time I had such a short time span of attention. My image was that through diagnosis and surgery, pieces of my life had come apart and were swirling around me, and in chemo all I could see were the white-out conditions from the swirl. I kept thinking my life was like a snow globe, recently shaken so hard that I couldn’t see the scene inside anymore. It took me a while to relax into the grey of it and not panic in the fog. I came to rest more easily with the knowledge that I would be able to see into the next chapter once it was available to me, and that right now I could cocoon up and just try to enjoy the unprecedented focus on today such limited views provide. I was struck again and again at how much pain I caused myself just wanting things to be different. Relaxing into the life I was actually living was the finest gift I could give myself.

And speaking of gifts, there were a couple that made the biggest difference. I am a lover of symbolism and metaphor, and it has been important throughout this whole cancer experience to gather the best symbols and metaphors around me. I was grateful for the soothing hand cream people sent (how did you know my hands would be so dry?) and the essential oils. And all the flowers to bring beauty in the grey swirl. But the most amazing gift I was given was a box of envelopes—a poem for each day, numbered 1-90. It was a ritual that each morning that first thing I’d put yesterday’s poem back in its envelope, send it to the back of the box, and open my new poem. I think marking the passing days is really important.  In the Maldives, I collected 84 beautiful shells to give to a friend just starting her 4 rounds of chemo. If you don’t have Mark and his amazing gift, perhaps you could go to the store and buy 84 beautiful marbles (or stones or shells) and keep them in a jar, and each day move one of the marbles to a second jar. I think we should each have something beautiful to hold and notice each morning, and then give up the beauty for that day and move into the beauty for the next day. Even in chemo, every day holds the possibility of loveliness.

The second gift was one I gave to myself: a necklace that I decided had magical powers, in part because it so reminded me of the meditation CDs I had listened to that were helping to transform chemo from a poison to a magical healing liquid (this is a Health Journeys meditation and it helped me a lot). I decided to buy a representation of that idea, and I kept that with me at all times. Funny the symbols that help. If I had it to do again, I’d believe that my necklace was magical even sooner than I came to believe it.

I also came to believe my yoga was magical. Atmabhava, my yoga teacher, came to my house once or twice each week, and his gentle presence and the constancy of the practice always made me feel better, even on the days when I felt at the beginning I probably wasn’t up to it. And my walks in the hills with Melissa—surely the company of a dear friend and the feel of the wind on your face—surely that is magical. I believe we should gather magic around us and let it heal those places of us that are battered well beyond the effects of the chemicals in our veins. Over time I came to decide that a little magical thinking—along with modern medical advances—was a gift to myself. I only believed in good magic, good signs, by the way. I left the curses and signs of doom to folks who have a surfeit of good news in their lives.

Hair. Wow this was a hard one for me. It’s funny, I have never been particularly interested in the way I look, have never been a great beauty whose power comes from her looks. But losing my hair! I felt terrible and then felt shallow about feeling terrible! I got a really short cut just as I went into chemo—so that I could see what I would look like once I had short hair on the other side. That was a huge help. I guess the other thing to say is just that I needed to be gentle with me and to get others to be gentle with me too. I needed some time to grieve the way I used to look—and all that symbolized for me (a healthy person who got to choose what to do with her hair and body). And I needed to come to terms with the naked features I had now. (By the way, if there’s anyone in your life who can’t stand to see you bald, that’s their problem and not yours—I had to be really careful around folks like that.) And now, at just about two months out of chemo, my new short hair is downy and soft, and I think I’ve left my wigs behind except for costume parties. This isn’t a hair style I’ve chosen, but I am grateful each day for the silky and growing hair, the smallest bit of which makes me feel more healthy again. It would have helped me to know how fast I could get used to going out with radically short hair (just two months of growth). And it would have helped to be able to believe—really believe—that there is a kind of open, accessible, magnificence to a bald face (I am grateful to each person who told me that, again and again—last weekend it stuck in a new way). I couldn’t hold that before, but I am growing to hold it now, and I will hold it for you and for the other woman who feel naked and ugly when they are hairless. I wish I had been able to be more graceful with the baldness and with the looks that baldness has gotten me. For this part, it is just about noticing again which things I can move beyond and which things trip me up. There is no shortage of developmental opportunities during chemo.

My skin broke out after the first round (typical, I’m told). And then it became luminous. I have never had more beautiful skin. Leigh (the cancer and beauty woman) said it was the most aggressive chemical peel on the market! I got a horrible rash after the third round, but I read some things about needing to scrub the skin on your body as well as care for the skin on your face, so I made a scrub of coconut oil and caster sugar and scrubbed each day. I should have done this earlier—and I’ve kept dong it after chemo because it’s so delightful. I was rash free (and smelled like a tropical holiday) for the rest of chemo. (And steroids took the rash away as soon as I started using them—it was ignorance that kept me in itchy misery for 48 hours before I started the drugs.) As my hair comes back, my skin also goes back to its pre-chemo state and becomes ordinary. I look back on my luminous skin as one of the only beauty benefits of chemo (that and silky hairless skin—I have never ever been so soft).

In the weeks before chemo began, I had two meetings—one with the oncologist, and one with the home-visit nurse—about the various chemo symptoms. They flipped through the pages of side effects and explained what I needed to do about it. Rinse your mouth with salt water to prevent mouth sores. Take your temperature every day to see whether you’d get a lifethreateninginfection (that always showed up as one word for me). Wash your hands. Be careful not to get any bodily fluids on anything for the first 3 days because you are literally poisonous and you’ll have to wrap that sheet or bowl or carpet up and throw it away. I wanted to run from the room, screaming.  I just knew that I was not strong enough to handle all that. Still weak from the surgery and my life in disarray around me, I knew I would not be healed enough to face all of those miseries with anything like grace. I became the chant of the little engine that couldn’t “I know I can’t I know I can’t I know I can’t.” Fast forward my little engine to the last chemo round (oh the last round of chemo was by far the easiest for me, though I didn’t see that coming). I saw with the nurse and went through all the side effects again, ticking them off like cities on a ten-day European coach tour. I had had them all (except the lifethreateninginfection) and had taken it all in stride. We are stronger than we will ever know, stronger than chemo, stronger than cancer, stronger even than the terror of death. We will face it all because it will come to us to be faced, and then the wind will blow the storm away, and the waves will wash over the sand and your second round and your third round and your fourth (and urgh, your fifth and sixth) will pass and you will be new. And you will have had the strength to face it because women have had the strength to face horrors far beyond chemo for centuries and their DNA spirals through and around us like a golden mesh, ensuring we have that glittery flexible strength that we need to get through.

When I sat down with a friend who was just out of chemo as I was just going in, she tried to reassure me that it wasn’t as bad as she had expected. (just as here I am trying to reassure you that it wasn’t as bad as I expected.) She pointed to a patch on her arm that was swollen and still not quite right (a patch that I now have as well—but it gets better each day and is nearly gone now). And even that freaked me out. I wanted everything to go back to the way it was before. I wanted chemo and cancer and my scars to all disappear instantly when I was through to the other side. I may have come the farthest on this issue. I no longer want my life or my body to look just the way it did before. I no longer look at my scars with horror (I had both breasts operated on because it was a full mastectomy and reconstruction and they needed to mess with the right breast to get it to match the left). I have come to much greater peace with my nearly naked head, even noticing now the way my features sort of blur and disappear when I put on my wigs. I am fond of the smooth firm globe of my prosthetic breast and the almost bionic-woman quality I sometimes feel when I touch my skin and feel silicone just underneath the flesh.

I don’t want to go back to who I was before. You know as I do that there is loss aplenty on this path. But it’s not straight loss—it’s like a barter. You barter away your old life, your old sense of health and longevity, your old hair. And in return you get a new self, a richer love of each day, a more compassionate and centered philosophy. It is not a trade I ever ever ever would have signed up for. But now that I’ve got it, I wouldn’t trade it away. You are just now entering the storm of it. The wind may tear at you and the sand sting. But at the other end, each day will glisten and shine in a way that is just not possible without this affront. I was saying to a client the other day that it’s nearly worth going through chemo to know the gratitude of being on the other side.

I’m only two months out. I still can’t decide whether to use shampoo or face soap on my fuzzy head. My scars are still angry red (but fading, fading). I have no idea how long this afterglow lasts and whether I’ll find myself returning more to my old self in time. But I know that chemo has helped shape who I am today in rich ways, and I know that I am stronger now than I ever thought I was. I know that I actually notice and delight in each day I don’t have a headache. I sometimes catch myself not feeling tired and I feel a wellspring of delight and laughter from that place. I loved food before chemo, but a few months without my taste buds left me in a carnival of delights at every meal now that they’re back. Coffee has never tasted better; the mix of salty and sweet in my healthy almond shortbread makes me moan with pleasure, and I am often now silent as I eat a really good meal because I am overcome by how glorious it is to taste it. These are gifts I never saw coming, and for me they have not faded over the last two months—my delight grows with my hair. I couldn’t see out of chemo as I went in, but I can tell you now that out of chemo is spectacular.  

I wish you godspeed as you begin this trip through the storm. There are endless stories of male heroes who quest to fight dragons and sea monsters before they can come home again. This is our story, and these are our dragons. But like them, we are questing, and like them, we’ll return home to our halls and people will gather around and hear us sing out about our adventures. I can’t wait to hear as you sing out about yours. May you learn in the quiet grey stillness all that you need to bring you to a sparkling and joyful life on the other side.

With love and hope,

Jennifer

 (Here was one of my very favourite poems from Mark's poetry box)

Monet Refuses the Operation

By Lisel Mueller

Doctor, you say there are no haloes

around the streetlights in Paris

and what I see is an aberration

caused by old age, an affliction.

I tell you it has taken me all my life

to arrive at the vision of gas lamps as angels,

to soften and blur and finally banish

the edges you regret I don’t see,

to learn that the line I called the horizon

does not exist and sky and water,

so long apart, are the same state of being.

Fifty-four years before I could see

Rouen cathedral is built

of parallel shafts of sun,

and now you want to restore

my youthful errors: fixed

notions of top and bottom,

the illusion of three-dimensional space,

wisteria separate

from the bridge it covers.

What can I say to convince you

the Houses of Parliament dissolve

night after night to become

the fluid dream of the Thames?

I will not return to a universe

of objects that don’t know each other,

as if islands were not the lost children

of one great continent.  The world

is flux, and light becomes what it touches,

becomes water, lilies on water,

above and below water,

becomes lilac and mauve and yellow

and white and cerulean lamps,

small fists passing sunlight

so quickly to one another

that it would take long, streaming hair

inside my brush to catch it.

To paint the speed of light!

Our weighted shapes, these verticals,

burn to mix with air

and change our bones, skin, clothes

to gases.  Doctor,

if only you could see

how heaven pulls earth into its arms

and how infinitely the heart expands

to claim this world, blue vapor without end.

Bittersweet

There is a new chocolate place at home—the Wellington Chocolate Company—where they roast their own beans and make them into single varietal bars like wine, listing the vintage and the origin of cocoa beans. This would sound naff, except the Madagascar beans (crop of 2013) taste so deliciously of raspberries that people at first don’t believe that there aren’t raspberries in the mix.  But no raspberries—just Madagascar beans and sugar, a treat worthy of the woman who has changed her diet in the hopes of keeping cancer away forever.

There is something very apt that the one dessert that is recommended for those of us who are trying to make our bodies cancer free zones is bittersweet chocolate. Here, at the end of the most aggressive part of my cancer treatment, I am coming to see that bittersweet is everywhere, not just in my chocolate.

I’ve noticed that one of the ways I can place an event in time is to go back in my memory and taste for a single feeling, unalloyed with others. Single varietal emotions are circa 2013 or earlier.  I picture myself somewhere, laughing or chattering or serving a client, and if it doesn’t have the ribbon of sadness in it, it happened before cancer. And it’s not that I wasn’t sad before—I was, and I was also sometimes joyful or grumpy or irritated or delighted. It’s just that now emotions seem to arrive pre-fused with others and I cannot un-fuse them. Every surge of delight has, in the back of it, a small keening sadness. This joy will pass. And each dip into misery has, to lighten it, a sparkle of gratitude for just being on the planet and feeling anything at all. This sadness will pass.

 

Today I am in paradise. I, who have been wearing merino beanies day and night to protect my baldy head from the freezing winter back home, have just now brought my sunburnt ears into the cool air conditioning to escape the heat and the sun outside. Yesterday we tried scuba diving for the first time; this morning Michael and I had a massage. This is a very very good life. I watch myself feeling a surge of joy and then the sharp kick of sadness. Happiness lives always with her sister Sorrow who reminds me of the fleeting nature of these breathless days. This holiday will pass. Those turtles will pass. These kids will grow up and move away.  And it isn’t that I’m searching around for the sadness or that the pathways of misery are so well-worn that my wheels find the sad rut in the road. It’s just that it occurs to me as fundamentally true.

 

In this moment, in every moment, we have a fractal of all that life has to offer. It is a tangle of sound and feeling and sensation; it’s a wonder we can ever focus enough to love or laugh or work. Cancer has tuned my ears to hear more of the cacophony than I used to hear, and sometimes I long for the single pure note of bliss or ease. I notice that I do not long for the single note of sadness or despair, and perhaps that is one of the brilliant gifts of this time. Cancer could be cruel and send me into misery, but instead it has been kind and has woven rather than unstitching. If it doesn’t let me feel joy without sadness, at least I am so much less likely to feel sadness without joy.

Each morning I look in the mirror and am grateful for the ever-fewer eyelashes and the disappearing eyebrows. My nails are starting to loosen from the nail bed. Chemo has not quite finished its great removal process. Here I am grateful for the sweetbitter feeling as sadness washes over me. I am the only bald woman here, and heads turn and children point as I walk through the dining room (and not because I am a great beauty or wearing a particularly smashing dress). But this too is fleeing.  My eyebrows will come back. My hair will grow. My hotflashes will decrease. I will return to my rightful place of an ordinary middle aged woman in a crowd of young families and honeymooners, no head turning necessary. But I am not looking to speed towards that time, because that would mean giving up the delight of this moment. I’ll take the beauty and the ugly woven together and wrapped in my head scarf.

The Madagascar Dark from the Wellington Chocolate Company is 70% bitter cocoa beans and 30% sugar. It is just the right blend to bring the raspberry chocolate tang to the front of my tongue, and an almost burnt bitterness to the back. I wouldn’t want those proportions of bitter and sweet in my life at all, but the result of it—the mix that brings out the full roundness of the flavor—is the point. Maybe the loss of the single emotions is actually a singular gain.

Light

Maybe the key thing you learn when you’ve been travelling for 30 hours, mostly over some or another ocean, is how vast water is. And maybe the key thing you learn when you’ve spent the last six months in treatment for cancer is how fragile and ephemeral life is. These two ideas are somehow beautiful next to each other.

We have reached the light at the end of the tunnel. These hours on planes and in airports are the final passage to Next, to the pause, the in-breath between the last six months and the next chapter. Michael and Aidan and I are coming from the east, from our wintery island in the middle of the South Pacific, and Naomi is coming from the west, from the mind-blowing trip she’s just had at the Global Youth Leadership Conference in Vienna, Prague, and Berlin. We facetimed from airport to airport—we were in Singapore and she was in Qatar. We will meet at the Male airport and get on a sea plane to an island one mile long and a couple of hundred yards wide, a patch of sand to rest and reconnect and regrow. Life feels magical.

My sense of the passing of time has shifted now that I’m out of the grey chemo and back into a technicolor life. No longer am I counting down the days, unfolding each morning’s poem with the double delight of opening a beautiful poem and also closing another day. My mind is rejecting the idea of wishing this time would pass more quickly. Even this travel time is to be savoured. The first flight to Melbourne, Aidan quivering with excitement, the kind Qantas steward sad that I wouldn’t eat the dinner they offered (a choice between pork and beef, but I still haven’t been able to bring myself to eat mammals). Our six hour layover where we set off into the dark and cold Melbourne, dragging our suitcases behind us, to eat mediocre sushi at what was clearly a popular university gathering place, the howls of laughter from the self-declared “starving musicians” at the table behind us making each of us smile. The flight to Singapore, making my body economy class origami, folding around and over Aidan as we flew through the night to Singapore. And now here, high over the Indian Ocean, no land in sight, giggling as Michael surgically removed the objectionable KitKat bar from the otherwise palatable ice cream cone (for him—I stuck to the spectacular dark chocolate we brought from home). This time is to be savoured, to be loved, to be remembered. I will never fly for the first time to Male, never fly with a 12-year-old Aidan again.

What would it be like to live the rest of my life with this kind of attention to the present? And what demands does it make on me to craft the kind of life that is does not have days or weeks I want to race through to get to the good stuff?  What if we all believed that all of it is the good stuff?

Neither do I want to grasp, though. It’s easy to not wish to prolong the 5 hour layover in the Singapore airport, but it will be harder to not wish to prolong the magic of swimming with sea turtles, of the thrill of hearing for the first time as Naomi articulates the bigger world she is a part of after her trip. When I get too graspy for any moment of life, suddenly the fear of recurrence and death roar in. I get black moments of that out of nowhere, as Aidan rubs my ever-furrier head, as the sun dips into the sea, as Perry frolics into the hills, his ears blowing back in the wind. I want to freeze time, hold it, not have Aidan grow or Perry die or the sky turn black and cold. But all of these things will happen—and it’s good and right that they happen—and my grasping won’t extend their time for one moment; it’ll just make the moments I have less rich.

So this is my new practice, and it makes sense to go to a tiny island in the middle of the Indian Ocean to begin it. Here is one of the first countries in the world that will be drowned in rising seas; here the balance of sand and tides is always tenuous. Like each of us, with our loves and our fears and our hopes for the future. It is an ancient idea, so simple it hardly bears repeating, and so difficult that people have given their lives over to the practice of it: we live right now. We can mourn what we have lost, who we have not become, the pain or misery or injustice life has brought us. We can fear (or hope) for tomorrow, clutching at those things we don’t want to lose or hurling ourselves towards the mythical better future. But all of that distracts me from the only thing I ever ever have, this moment, which is right here at the back of a Singapore Airlines A330, my hair now a five-o’clock shadow on my head, my boy asleep in the row behind me, my husband’s leg pressed up against mine. The world is all lights, and all tunnels, and all thresholds from what was to what will be next.

Pictures today from the seaplane to the grey destination--magnificent and stormy, like life, really

Hair today, gone tomorrow

I am on my way home.  Ten days ago I was delighted—and I guess a little unsettled—to be back on an airplane after three months of feeling tethered to Wellington. I moved through my old patterns in a tentative way—could people tell I was wearing a wig? Would I feel different? Was I strong enough to do the really significant press of work that was ahead of me? In the last ten days I have scaled a wall of interesting and difficult work, I have eaten beautiful food with dear friends, and I have begun to live into what it means to be on this side of the cancer experience.

One of the challenges of this time is that, as you know, I don’t have any hair (although more and more each day—a downy colourless fuzz now). I got used to wearing my wigs in the last two weeks before I went away—just to get my head used to the feel of it, the heat and the itch. But getting used to the feel of a wig isn’t the same as getting used to being out in public with it all the time. In two of the workshops I taught, the participants and I knew each other well enough to joke about the wigs—and I was comfortable enough with them to wear a different wig on the second day. Why have fake hair if you can’t have fun with it? It took me a little while to get used to the double takes, the puzzled look that broke into a wide smile, the teasing about how young I look in the Clare wig (and presumably how old I look in the Jennifer wig).

But it is still unsettling, a little, to put on my hair before I head out, to remember to make it even, to hold on to my hair in the wind, to hope that when I scratch it, my hair won’t list sideways like a scene in a Jim Carrey movie. And then there are the times when I don’t wear a wig at all.

Before I left, I had agonized about what I might wear in the fitness center. My walks with Melissa had left me in good shape, but scrawny me in workout clothes and nearly-bald head looked exactly like what I was: someone just barely out of chemotherapy.  Naomi and I decided that a silk scarf was a weird look for a gym and that wearing hot and itchy hair was out of the question. So I stuck on a beanie and headed down to sweat.

Notice the problem with that sentence? Beanies are hot—not exactly the feeling you want if you’re working out and you also have hot flashes (complements of my new daily medicine). And so, under the bright lights and surrounded by mirrored walls, I had to decide whether I was more into the look (keep the beanie on) or the comfort (take the beanie off). I took the beanie off.

Here’s what I notice about looking like a chemo patient in front of others, either strangers or light acquaintances: their eyes flicker to my head and then to the floor. In the gym, no one met my eye, no one smiled, no one said good morning.  The guy waiting for the elevator when I walked up suddenly wasn’t waiting for the elevator anymore (he looked at my head and at the floor and walked away—not sure whether my baldness reminded him of an exercise he forgot to do?).  All of this made me believe that we are, as a collective, really uncertain about how to deal with someone who looks sick. And I wondered, how would I have faced this if I had seen a spindly bald woman working out at the gym? What would my eyes have done? And what if I had been trapped in an elevator with her for 20 floors?

I am not sure I would have done particularly well myself. Now, I would look in her eyes and smile. “How are you feeling?” I might ask. “Love the fuzz.” It might be I’d get it wrong. Maybe she was bald by choice? But how many women do you know who are bald by choice? How many women do you know who have had chemo? (Melissa tells me your answer depends on your demographic.) All I know is that now I would err on the side of caring for the sick, for those who can feel invisible.

But I am a lucky one. I am rarely in places where I feel invisible. On a sparkling Sydney Sunday, I met a bunch of friends and we had brunch in the winter sunshine. We talked about death and sickness and aging and love and brownies and babies. We drank excellent coffee (which I can now taste) and laughed a lot. I swapped wigs half way through and let Anna feel my fuzzy head and squeal with delight. I am awash in gratitude for my friends, for my family, for my life. It is almost worth going through chemo to know how spectacular it is to not be in chemo anymore. I am stronger and healthier than I was when I began writing this entry. I love being alive.

 (Pictures today: Dawn over the Opera House, Naomi at breakfast on a layover in Sydney on her way to Europe, dessert over the city, some of the friends from my brunch)

Finis

Round last. Day last.

And so it ends.  This is the night I would have taken my steroids. Instead I had a party to celebrate my birthday and my last day of chemo. Tomorrow I would have gone to the hospital, parked in the cancer centre, weighed in, and had my infusion. Instead, Melissa and I will take a walk in the hills and talk about our lives. I have put away my steroids, my anti-nausea medicine, my antihistamines. I have put away the thermometer, the salt water mouth rinse next to the sink. I have put away the pitcher with the orange water that is the only thing I can taste during those days when my mouth feels carpeted. I have put away the chemotherapy.

 

I have pictured this day for so long. I have imagined the thrill of having this chapter closed and the next chapter opening. I feel a little surge of delight at the thought of it, butterflies in my stomach. Tomorrow the chemo ward will be filled with people—frightened, sick, putting on a brave face. But not me. Tomorrow night people will come home sick, take to their beds, hope for a gentle round. But not me. I am awash in gratitude for the grace of passing time.

 

Now I have finished. I am standing at the top of this big climb, looking back at the pathway. Chemo was not what I expected it to be.  In the appointments before I began, the doctor and then Debbie took a long time to walk their way through the list of side effects. As I listened to them I remember thinking, “I do not think I can bear this if these things happen to me.” Then, at my last chemo, I told the nurse I had been doing really well, although that third round was brutal. She pulled out the side effect list to see which ones I’d gotten. Yes yes yes yes yes. Other than the genuinely horrific (the ones that require hospitalization or blood transfusions), I had gotten each of the side effects—plus extra ones. But none of them had been so debilitating or stayed for so long or been so frightening as I had once imagined. Living through it, I didn’t (often) have the sense that I couldn’t bear it.  Perhaps that is how our sense of future pain always is—something we think we couldn’t bear until we live it step by step. And then we do bear it, because really what other choice is there? The sun rises and sets, the tide comes in and out, and we face our pain and terror and move through it.

 

But just as I once thought I couldn’t bear this, I also thought I would come through it to a different place. I looked forward to 15 June as the day when all my side effects would be gone, when I would walk into the new chapter with chemo fully behind me and the way ahead clear. Instead I struggle with the throbbing pain in my fingers as my nails threaten to fall off, and I watch as my eyelashes and eyebrows continue to thin perilously. I believed that the chemo time would be a contemplative space where I would come to understand the person I would be next. I knew that I was confused and disoriented as I headed into chemo, and I thought that on this day I would be oriented and clear. I was wrong.

This morning Carolyn and Melissa and I climbed up the big hill at dawn. We braved the winter winds and the threatening rain and chattered our way up up up the hill, distant mountains shimmering. I was weary on the climb, the fatigue from this round still hanging around even though the chemo is officially gone. But I made it to the top (for a while following some sheep on the path), as I suppose we tend to do. We arrived home to a house redolent of garlic with a cheerful Michael cooking away for my party. Soon there were four of us in the kitchen, and then the house began to fill up with friends and laughter.  We ate chili and cornbread and sang over polka dotted cheesecake and flourless chocolate cake (I baked with real sugar…). I do not know what happens next. I do not know who I’ll be next. But I do know that tomorrow will be my favourite Monday in as long as I can remember.

And so the next chapter begins.

Here is my very favourite healthy cookie. Enjoy!

These butter shortbread cookies are crispy buttery deliciousness.

Adapted from Detoxinista.com

Ingredients

(I always make a double recipe of these because I love them so much, but you can start with this much…)

• 1 cup almond flour
• 2 oz butter, melted
• 1½ Tablespoons maple syrup
• healthy pinch of sea salt
• 1/4 tsp. vanilla

Instructions

1. Preheat oven to 150 C
2. Mix all the ingredients in a small bowl until a batter forms. I like the cookies about a teaspoon big, and I roll them with wet hands into a ball and flatten them.  I gently flattened my cookies using a fork. Thinner cookies will be more crisp
3. Bake cookies for 20-25 minutes, watching closely to ensure they don't get too brown.
4. Remove cookies from the oven when they are lightly golden brown. I like them best once they are cool and crisp all the way through.

Yogic blessings

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Day 74 ; Round 4, day 11.

I am halfway through the final round. I have not had the belly shot, not had the flu-like symptoms that come from the belly shot, nor the bone pain. I have not (yet?) gotten the rash. Or as many headaches. Or as much eye sensitivity.  My fingernails ache but they are not yet falling off.  The last of my eyelashes have not gone yet (I am grateful each day for the ones that hang on--I am very nearly at full naked mole rat status).  I am peering through the edge of the dark woods and can glimpse the meadow in the distance. I am nearly through.

I want to stop, before I’m out of the dark forest, to look around at the (yew?) trees around me and pay tribute to some of the companions that have brought me through.  One important companion that I haven’t written about is Atmabhava, my yoga teacher.  Early on, Melissa took on the job of finding the right instructor for me to come to my house once or twice a week to give us a private lesson. And so, for the last 12 weeks, Atmabhava has arrived as we’ve been clearing away the living room furniture, and he has taught yoga to us and to whichever guests happened to be here. We have done sun salutations in the sunshine with Dad and Jamie, battled for downward dog space with Dolce and Perry (who think head-butting dog is more fun), practiced tree pose with Laurie, and pushed around prana with Wendy. It has been an anchor of my experience and a key part of what has kept me whole and happy.

I have done yoga in probably ten countries and with maybe 50 different teachers. I have loved Michael in Sydney who does yoga for accountants, and I have hated hot yoga in Seattle and the peppy yoga instructor who loudly cheered us on (there is no cheering in yoga). Atmabhava has us think about yoga in a totally different way than any of those others, and it has been exactly what I’ve needed. His focus is always on the prana, the energy, the breath. We practice with our eyes closed so there is no careful mimicking of the teacher’s perfect pose, no checking out what the beautiful woman next to me can do that I can’t. It’s just my body and my breath and his voice, gently telling me what to do next. And while in the past I have expected yoga to be something of a workout, now I really understand the importance of three different components: the poses, the work with the breath, the deep relaxation.  I don’t honestly know what alternate nostril breathing does for my system, but I know that there has never been a time when I haven’t felt more relaxed and alive after Atmabhava’s yoga than I did before he got here.

This then, is one of the cancer gifts. When I think of this chemo time, my mind will sometimes drift to some of the horrors of it. I think that will be the smallest part of my memory, though. The lingering remnants of this time will be a friend delivering a meal for my family to eat that night. The excited arrival of another beautiful person from somewhere in the world who has come to hold my hand (and usually lament about the weather). Opening another one of Mark’s poems on a new day and feeling the words flow through me. The feel of the sun on my face as I lie in shavasana after a particularly tiring boat pose. When I hold my arms out to capture the gifts, they heap and pile and scatter around me, so many treasures I can’t contain them.

So for you today, one of my favourite recipes. One of the pieces of me I’ve lost to cancer so far is Jennifer-the-baker (although I baked a hell of a birthday cake this week).  White flour and sugar are two ingredients that might be bad for me, but are awfully good for cookies and cakes. I have thrown out endless varieties of healthy cookies (the joke around my house now is that it would be faster if we just put the dough in the compost without baking it to save a step). But these brownies—while not as healthy as some of my baking—are keepers. The darker the chocolate, the better for you, so splurge.

Flourless Peanut Butter Chocolate Chip Blondies

Adapted from: Detoxinista.com

Ingredients

• 1 cup natural creamy peanut butter (preferably organic)
• ⅓ cup agave syrup
• 1 whole egg
• 2 teaspoons vanilla
• ¼ teaspoon sea salt
• ½ teaspoon baking soda
• ½ cup dark chocolate chips

Instructions

1. Preheat oven to 350F and grease an 8" square pan with butter or coconut oil.
2. In a small bowl, mix the peanut butter, agave, egg, vanilla, salt and baking soda until well combined, then fold in the chocolate chips.
3. Pour the batter into the greased pan, and use wet hands to smooth the top.
4. Bake at 350F for 17-20 minutes, or until the top is a light golden brown.
5. Let cool, then cut into squares and serve!

Recipe adapted from Detoxinista at http://detoxinista.com/2011/12/flourless-peanut-butter-chocolate-chip-blondies/

 (PICTURES TODAY: My chemo meds card, warming the house now that it has finished its job; a walk near the house that Michael and I took on my birthday; me and a cake loaded with sugar and flour. It was delicious)