On short hair, short workdays, and long nights

It is chemo day 3, a glittering Wednesday by the sea. I have been teaching much of the day, a Conversations at the Growing Edge workshop, and now I am resting as my dear colleagues bring the day to a satisfying close without me. This workshop was on again off again as my treatment decisions got made, and as it became clear that I would be in chemo this week, we made two sets of complicated decisions that messed with a lot of people and for which I'm totally grateful. We decided to have Keith and Jane teach it for (or with) me and to bring it to Paekakariki so that I could be there sometimes even if I felt terrible at other times. And so on this post-Southerly brilliant day, this workshop I have taught in universities and houses and retreat centres around the world came to St Peter’s Hall.  And I came there too!

 

It is life giving to be with these program participants. It is life giving to be thinking alongside colleagues I adore. I love this work beyond measure and the people who come and take these workshops are uniformly wonderful—in very diverse ways. We have participants from New Zealand, Australia, the US, UAE, and China. From education and business and the non-profit sector. And we delve into meaning and connection and curiosity and confusion and love.

And I can keep up, though I do get tired more easily. I am feeling like I am moving through honey—everything is a little viscous and a little awkward, but sticky with the sweetness of being alive and in connection with ideas and people I love. I am recognising each day the gift of a life woven through with meaning. Even when I fall into holes, I find strength there to pull out of them because of the meaning that offers hand holds everywhere I look.

The beautiful Rene

Yesterday I had my hair radically cut. I have been convinced by the overwhelming data that this particular chemo cocktail just makes everyone lose her hair.  Everyone.  So I went to Rene and told her I wanted her to cut my hair close as short as it would possibly look good on the far side of bald so that I could have a sense of myself  in the nearer future than my old hair cut. She asked me questions about my opinion, and I just gave myself over into her hands. It was the most interesting experience of a kind of controlled surrender, not so unlike the way chemo felt on Monday. She cut and I watched, perched from somewhere near the ceiling, watching the woman with cancer get her hair cut off just as I had watched the woman with cancer get her IV put in. I could feel the scissors on my hair, watch my face change in the mirror, and be in it and out of it at the same time. Very interesting. And my friends were supportive and loving about it, along with the appropriate amounts of laughter and black humour. When Rene dusted me off and hugged me tearfully, she told me the haircut was a gift. It felt more like a blessing—the gift of her friendship, her artistry, and a bearable image of me that I’ll probably get a glimpse of before 2014 is over.

And then later, after the shot in my belly (ick) that Debbie the oncology nurse came to my house to give me (the service she provides is invaluable in terms of comfort and support), it all fell a little down hill. I tumbled down down, into aching bones and belly, into exhaustion, and came to a rest teetering near the hollow of misery. When I went to put my hair up to wash my face before bed and found no hair there at all, I fell into the hollow and sat down on the (heated and therefore extremely comfortable) bathroom floor and wept for my losses. Michael came in and joined me, and eventually Aidan was there too (you would really have to see how small our bathroom is to imagine how funny a sight this is with three of us). Sometimes being surrounded by love still isn’t quite enough to get out of the pockets of sadness.

The night closed in and the stars were obscured by the raging southerly. I took my exhausted and miserable self to bed. But the long night passes and the dawn does eventually come even as winter begins to move to this hemisphere (the sun doesn’t rise until after 7 this week). And there is another day to make another go of deepening of connection and curiosity and another day of Aidan infusing my water with something interesting (I’m supposed to drink THREE LITRES these first three post-chemo days and Aidan tries to make that task more pleasurable for me—today was ginger and lemon). And there is a rumply hall in a rumply village that I love on the cellular level. And the magic of seeing people in my place when I have only known them in theirs. And the delight of an opening, an idea created between us right in the moment. And the joy of a laugh between two people who were strangers just moments ago. And then I am tumbling again, but into joy and connection and that seems somehow a much bigger meadow than its more grey and miserable sister.

Tomorrow the forecast from the chemo predictions is for tired with a chance of achy. Friday the forecast gets more ominous as the drugs that prop me up these first few days trail off, and I get to see how the non-medicated me is taking to the yew juice that I am peeing out as fast as I possibly can. And the sun rises and sets, and the waves come and go, and we are all lucky to be alive.

Chemo, round one, day one

I’m home! Today I faced with an almost surreal sense of calm, actually. We began the day at the NZ Cancer Society offices where they offer free car parking, low-cost massages, tea and coffee and snacks and so many other benefits, all these volunteers helping to make the lives of cancer patients a little easier each time they visit the hospital. As the receptionist showed me around, I felt tears of gratitude prick my eyes.

It turned out that the thing I was most worried about was the result of the chest x-ray and liver and kidney scans.  Once I found out those were ok, and the infections under my breast were treatable and the chemo was going ahead, I was then somehow totally relaxed. They offered me an anti-anxiety drug and I turned it down.

The nurses at the chemo room were great, and as they explained the rare but seriously dangerous potential reaction I might have to the medication, they outlined the steps they’d take to protect me from that. People get reactions similar to anaphylactic shock and without fast treatment, can die. So she laid out her medication—just in case—and stood by to see if I would need it. Most reactions come in the first 10 minutes so she was going to be very close to me for that long.

My reaction—tightening of chest, flush, very slight difficulty breathing—was lightning fast. It happened with 1.2mls of the drug in my veins. I asked casually, “Is this slight tightening of the chest normal?” and the nurse flew into action, stopping the chemo, calling out to her colleagues, and rushing to get the antihistamines into my veins. Within seconds there were four nurses around me, taking my blood pressure, injecting new drugs into my IV, and monitoring my reactions. The symptoms never got more severe, and quickly went away.

The next step surprised me. They waited 30 minutes and then went to “rechallenge” me—by giving me the chemo drug again. They said now the reaction would be calmed down. Made me nervous though—R watched my heart rate change as the nurse came back for the “rechallenge.” But when I said, “Let me know when you’re ready,” the nurse told me I had been hooked up for 3 minutes already. No reaction. Phew.

Other than that, it was a mellow and easy experience. Even that was just 5 minutes of carefully orchestrated speed and then a settling back into the pattern. I was deeply impressed and unendingly grateful about the quality of the care. Naomi, Michael, and R were always an arm's length away and as I listened to my chemo meditation, Naomi held my hand.

And now I am home in the slanting evening sunlight. It has been a spectacularly beautiful day. I have been surrounded by people I love. I am so far tired and a little dizzy (the reaction to the medication to stop the allergic reaction, not to the chemo) and otherwise ok. All day I have been moved by the waves of love that have been rolling in through texts and emails and facebook. I am buoyed by your support and love and feel grateful to live in this country with these companions and all of you at this poignant moment in my life. Know that today, in my sense of calm even inside the emergency, it was all the hands holding me from all around the world that kept me calm and happy—and it was the excellent nurses that kept me healthy and breathing.

Sweets before chemo

A poem about trees from Janet, the perfect (gluten free, sugar free and really so good you'll weep) cookies I made tonight, and the gift of a magnificent sunset tonight. You would not believe how many people stopped to watch the whole of this show. Beautiful night and also scary.

Coconut macaroons
adapted from Nourishing Traditions by Sally Fallon
2 egg whites
pinch of sea salt
1/4 c maple syrup (or less)
1/2 tablespoon vanilla
2 cups unsweetened shredded coconut
1 cup toasted slivered almonds

Beat the egg whites with salt until they form stiff peaks. Slowly beat in maple syrup and vanilla. Fold in coconut and almonds. Drop by spoonfuls on parchment paper.

Bake at 300 degrees for about 25 minutes until lightly browned. Turn oven down to 200 and bake another hour until they are completely dry and crisp. Cool completely. Think of me and smile as you eat this yummy crunchy deliciousness.


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Naomi and me

Lost

Stand Still. The trees ahead and bushes besides you

Are not lost. Wherever you are is called Here,

And you must treat it as a powerful stranger,

Must ask permission to know it and be known.

The forest breathes. Listen. It answers,

I have made this place around you.

If you leave it, you may come back again, staying Here.

No two trees are the same to Raven.

No two branches are the same to Wren.

If what a tree or bush does is lost on you,

You are surely lost. Stand still. The forest knows

Where you are. You must let it find you.

- David Wagoner

Blessings in the trees

Ok, I’m back in the magnificent village I call home. I have baked some seriously delicious coconut meringues (from a recipe in the book you gave me, Sue), walked in the hills with Melissa twice, and hung out with Michael and the kids. I have had my meeting with the chemo nurse, Debbie. I have been to the hospital for my tests; the technicians each said that my scans look normal to them but that the doctor makes the final decisions—that’s as good a report as I was going to get. Now it’s just the weekend—sparkling days and chilly nights—and then into the next phase.

I am ready to go! It turns out to be excellent to have worked right up to the last minute and then come home and get started, because I am all ready for this next phase to begin. I have read up on the side effects, Debbie has walked us through the various emergency numbers, and my wigs are at the ready (one of them scared me SO much last night as it crashed to the floor during a small earthquake—any of you ever been terrified by a falling wig?). I have my ribbon-y necklace, my lifetime supply of green tea (thank you to Beth and Janet!) and the love and support of all of you reading. I couldn’t be readier.

And, I have a new comfort, in the form of trees. I have a friend skiing this week in the wilds of Canada, and he’s skiing through alpine forests. This is dangerous play because trees in snow are dangerous for any number of reasons. I'm curious about those who have dangerous fun (not me!) so I've asked about it. Zafer, reflecting on the experience of skiing through trees, tells me:

I have learned that the best way to ski in densely wooded terrain is to face the slope while looking for open spaces to go through. I have learned that looking at the trees gets me focused on the obstacle and inevitably gets me in trouble. It reminded me of meditation: the trees are the thoughts and emotions that bubble up, and the space between the trees is the essence of my being. If I keep my mind on the thoughts and emotions, I cannot rest into my core. I wonder whether this is also true of life? 

I’ve been wondering that too. And wondering what it means to think of my time in chemo this way. I’ve been playing with keeping my focus off of the trees of the dangers (the low blood counts, the mood swings, the nerve damage, the hair loss) and shifting my attention to the open spaces and the long arc of the life I’m working to have. I have to notice the trees enough to do the things I have to do (weigh myself and take my temperature each day, rinse my mouth with saltwater and baking soda five times a day—yum) but not let my eyes rest on them in a way that makes it hard for me to see the spaces in between. I need to be careful that I don’t panic in the trees rather than watching the arc of the slope, the sparkle of the lake at the bottom, the white snow against cobalt blue sky. I’ve been working on this all week.

 

And then, as an aside, Debbie said yesterday, “Well, you know your chemo comes from the bark and needles of the Canadian Yew.” And so it does. I’ve been reading up on it. This Canadian pine tree, while seriously poisonous, has also been used for centuries by First Nations people as a medicine. And now it’s coming to an IV near me. Somehow the conversation with Zafer about skiing through Canadian alpine forest and the coincidence that my chemo is actually made from Canadian alpine forest struck me as a blessing. And then, as I was writing this blog, a blessing popped onto my screen from Grace (who says in her comment on a different post):

Yes, Jennifer, you are deeply loved in every corner of the planet. Every tree bears witness, every breeze whispers comfort, the beautiful moon speaks what you most need to hear. Everything is holding you now. Everything.

More blessings in the trees. I am so grateful to all of you, to Sue for the granola, to Mark for the astonishing envelopes, to Kirsten for the pancakes, to the participants at my gig last week who told me that they were made powerful by the “redemptive power of complexity.” What a beautiful ribbon to put on this month of work. I am grateful to each of you who make a dot on my blog map (see, Janet—I got a new one!) and who email or comment or just think about me.  I’ll keep you all close this week in close amongst the alpine trees, and long into the sloping arc of my future.

By the way, I’m making a little baldness collage to post here in a few days/ weeks once I join the rest of you baldies. If you have a picture of yourself bald, will you send it to me and be included in my collage?

Shifting gears

I am high over the sand and sage coloured landscape of Australia, on my way from Melbourne to Sydney where I catch my flight home to Wellington. This protracted time away has meant that I have only spent four of the last 23 nights in my own bed. That is unprecedented. Talk about avoidance… I am looking forward to being home and to seeing Michael and the kids and to walking in the hills with Melissa and snuggling with my dogs and wearing different clothes.

And there’s a way this also feels like the end of a chapter in my life and the beginning of the next. This time in the plane is a neutral zone inside a neutral zone (and has all the uncertainty of a tight connection and a late departure). I have had an unusually wonderful month of work, with client gigs even more vivid and vibrant than I’m used to. I have just read the new HBR piece from Kegan and Lahey et al which is stirring and engaging in a way I rarely (ever?) experience from HBR. I am coming off of 1.5 days of teaching complexity to a new client and with a new set of colleagues and watching how this new set of ideas and perspectives makes us all feel powerful and alive in new ways. I am deeply in love with my work and feel honoured to be able to earn a living in this way.

Now, though, is a time to turn from this work time into this internal time of treatment. I will have tests tomorrow to see if the cancer has spread to my lungs or kidneys or liver (highly unlikely, but apparently possible enough so that they want to look around). I will begin chemo Monday.  I listen to my healing meditation about the fountain of magical fluid that will seek out and kill my cancer cells and it really does help. I wear my new necklace as a charm to remind me to hold on to all that is life giving about the chemo, all that is beautiful about it. Today, though, I turned again to the information about what I might expect in chemo, information I haven’t looked at in 8 weeks. I had to quickly put aside the information and turn the meditation back on. The side effects will come or not, and I got the point about which ones I can seek to control (most of my attention seems to go into avoiding or at least discovering infection and avoiding mouth sores). Then I can just let the next chapter unfold.

What have I learned—or deepened into—in this month of work? I have learned that people are amazingly kind, and that their kindness and their attention increases in the face of hardship. I have learned that watching someone really sink into a new idea is a form of awakening that rivals the beauty of dawn breaking behind the Opera House. I have learned that understanding a little more about complexity makes people feel powerful. I have learned that watching children explore and pretend makes me laugh and cry. I have learned that transforming a metaphor also transforms the feelings the metaphor carries, that my words create and are created by my emotions. I have learned that trees are magnificent whether their bark is silky and white or rough and black, and I have wondered why our ideas of human beauty are so narrow when our sense of natural beauty is so broad. I have learned that fear, when we turn toward it, speak about it, and move ahead anyway, connects us deeply to one another. I have learned that I discover new things in every conversation I have with every person I am honoured to work with.

This new chapter will enable a whole new set of things to learn. I can’t say that I’m looking forward to it (though I notice that I am afraid my small infection from the surgery will delay the chemo—and that seems like a bad thing). Keith and I tease about how it might be nice to go to sleep and wake up with the chemo behind me (“Like Rip Van Winkle,” he said, “only balder.”). And while there’s a piece of me that wants that, there is more of me that wants to live this experience too. I intend to live this next chapter as fully as I have lived the last, to look for the beauty of it as well as the misery, and to bask in the love and companionship of those of you who are coming to hold my hand, and those of you who are present only virtually. The other day at a gig I read aloud a blessing by John O’Donohue and as I read I felt it through every cell in my body. And even that is literal right now. My cells are about to be turned over in record time, a chemical peel of the most internal variety. I wonder who I’ll become next. “It is difficult and slow to become new.”

For the Interim Time

(from To Bless the Space Between Us by John O’Donohue)

When near the end of day life has drained

Out of light, and it’s too soon

For the mind of night to have darkened things,

No place looks like itself, loss of outline

Makes everything look strangely in-between,

Unsure of what has been, or what might come.

In this wan light, even trees seem groundless.

In a while it will be night, but nothing

Here seems to believe the relief of dark.

You are in this time of the interim

Where everything seems withheld.

The path you took to get here has washed out;

The way forward is still concealed from you.

“The old is not old enough to have died away;

The new is still too young to be born.”

You cannot lay claim to anything;

In this place of dusk,

Your eyes are blurred;

And there is no mirror.

Everyone else has lost sight of your heart

And you can see nowhere to put your trust;

You know you have to make your own way through.

As far as you can, hold your confidence.

Do not allow your confusion to squander

This call which is loosening

Your roots in false ground,

That you might come free

From all you have outgrown.

What is being transfigured here is your mind,

And it is difficult and slow to become new.

The more faithfully you can endure here,

The more refined your heart will become

For your arrival in the new dawn.

After the storm...

The star of my day: a platypus

little blue penguins

Michael says that you'll worry about me when you read my last blog. I don't want that. There are good days and bad days, and last night was pretty miserable. I figure that's ok and that big storms often clear the air and make the sunshine more brilliant. I should be clear with all of you that mostly I don't dip into despair--last night was unusually miserable for me.

Today, in contrast, was a shimmering delight. The platypus came out to swim, the little blue penguins were very little and very blue, and the Great Barrier Reef display was awe inspiring. I found a necklace that reminded me of my new and improved chemo metaphor and, in an unlikely turn of events, bought it for myself. I had dinner with a friend after discovering we were both visiting Sydney at the same time (in hotels right next door to one another). And then I came home to find that from my window, I could see fireworks over the Harbour. A day filled with blessings.

Communicating to myself

true, but we also imagine what we most fear

This week I taught about why leaders should think hard about the use of symbols in their communications.  We tend to rely on a paltry set of symbols (when they are very common, we think of them as clichés) which weakens our connection to others rather than a rich set of images and metaphors that can feel both joining and arresting at the same time. And then last night I had the experience of watching how important the symbols are in my life right now.

A piece of it is that in this neutral zone between surgery and the rapidly advancing chemo time (9 days), it seems that nearly every conversation is freighted in a new way, heavy with meaning. Each points forward or back, into life or fear or love or sorrow. When people talk about their work, I hear their desire to leave a legacy in the world. When they talk about their children, I see the love that courses through their veins. Did we always talk about these things, really, or does cancer break the surface tension of conversations so that we spend more time in the depths?  I’m not sure.

I am awake on a brilliant Saturday morning in Sydney. I was meant to be awake on a grey morning in Paekakariki for this, my last weekend before I descend into the world of the cancer patient. But there is a massive storm bearing down on NZ right now and I thought I might not be able to get back to Sydney tomorrow for my last week of work. The logical thing to do was to just eliminate the risk and stay here, so I cancelled flights and made hotel reservations and ended up here looking out over the Opera House, watching the ferries come and go on glittery water.

But this weekend too becomes a symbol. I was alone last night, reading and eating and wandering the harbour front. I caught glimpses of my pre-cancer self everywhere—walking along the harbour with Bob Kegan in June, going to the Opera House with my dad last year, meeting friends coming off the ferry and bursting into the shrieking giggles I don’t even know I can produce until I see them. I saw this happy, healthy Jennifer around corners as lovers strolled in the sunset, families struggled with dripping ice cream in the heat, and gaggles of teenagers posed for pictures. Sydney is the city where I’m healthy; Wellington has been the city where I have cancer. But as I walked, my cancer tagged along with me, and the loneliness and fear of chemo shadowed my every thought. By the time I got back to my beautiful hotel with its harbour view, I was weeping.

 

I discovered that Keith, as a thank you for the work we had done together and as a nod to the difficult weekend alone in Sydney, had had flowers delivered to my room. Ironically, though, the flowers were delivered without water (why would a florist send cut flowers with no vase to a hotel room?) and three calls to housekeeping didn’t provide a vase. The symbol of friendship and support just added shadows to the darkness settling in as I watched something beautiful wilt.  The night closed in, and as the moon rose over the Opera House, I fell apart. What kind of healing is it that injects poison into our bodies that makes us sick, puts us at risk of deadly infections, and makes our hair fall out? This seems bizarre and horrible to me, and I am very afraid of it. Right now I am nearly healed from the surgery and it seems bizarre that I would now get so sick in the name of a longer life. Wow.

I plugged in my ipod and listened to a chemo meditation suggested to me by a beautiful blog reader. I listened as the voice worked to change my symbols of chemo and cancer into healing and healthy ones. The hellish poison injected through my veins turned to a healing fountain, connected by a ribbon to me, sending healing liquid into me to dissolve the cancer cells and replace them with normal cells building healthy vital tissue. I dreamt of rushing water and bubbling streams.

Now the flowers sit in their vase: fragile beauty and connection, brief-lived but precious in life-giving liquid. I’ve unpacked my things, including a little stuffed bunny from Grace, Leigh and Judith—a soft little reminder of the love of others from far away. The city awaits me. I’ll go see if I can catch a glimpse of the platypus at the aquarium, my sweet spirit guide from when I was a baby with a stuffed platypus toy in my crib. I’ll buy a few things to tide me over from this unexpected extension of the trip. I’ll keep my eyes open for a necklace or pin or image that makes me think of the healing ribbon of liquid that will make me sick to make me well. I live inside these symbols and they create me. I am working to watch my diet and not allow much sugar into my body; I also need to watch the symbols I indulge in and see if I can craft lifegiving rather than life sapping ones. I teach leaders to watch the symbols they use with others, but I am learning how careful I need to be with the symbols I use to create my own life.

To close, the poem that opened my dissertation, not so far away from this idea (and thank you, Kate, for the poem on my blog yesterday and for the card that filled me with joy in its stark elegance and in the grace of the poem you wrote for me. Zowie)

I Would Like to Describe

By Zbigniew Herbert

I would like to describe the simplest emotion

joy or sadness

but not as others do

reaching for shafts of rain or sun

I would like to describe a light

which is being born in me

but I know it does not resemble

any star

for it is not so bright

not so pure

and is uncertain

I would like to describe courage

without dragging behind me a dusty lion

and also anxiety

without shaking a glass full of water

to put it another way

I would give all metaphors

in return for one word

drawn out of my breast like a rib

for one word

contained within the boundaries

of my skin

but apparently this is not possible

and just to say -- I love

I run around like mad

picking up handfuls of birds

and my tenderness

which after all is not made of water

asks the water for a face

and anger

different from fire

borrows from it

a loquacious tongue

so is blurred

so is blurred

in me

what white-haired gentleman

separated once and for all

and said

this in the subject

this is the object

we fall asleep

with one hand under our head

and with the other in a mound of planets

our feet abandon us

and taste the earth

with their tiny roots

which next morning

we tear out painfully