Loss and becoming

It is day 7 of chemo. Today I woke after fitful sleep to my body hurting in the most unusual way—throbbing pain in my back and legs. I pulled my body out of bed and discovered that I couldn’t sit or lie or bend without some pretty serious pain. I had to shuffle slowly around the house, mostly miserable and feeling sorry for myself. I have meditated and showered and breakfasted and taken the mostly-forbidden pain killer (these mask fever which is the most important sign of the most dangerous side effect of chemo—what the doctors call lifethreateningbacterialinfection as though it’s one word). But now I am human again and able to sit without much pain.

Mostly, this has been a fairly easy first week. I’ve been tired and a little foggy, but I have been in very good shape, considering. The mouth sores have begun which is a real pain, and now this bone pain, but I am mostly feeling very fortunate.

As I’ve been trucking through these last months, I’ve begun to notice that there are some thoughts that have a level of toxicity that they become Forbidden Questions.  As I have danced with them and pushed them away, I’ve been noticing that they’re probably forbidden for all of us, not just during times of cancer. I’ve figured out some questions that I find much more helpful and thought I’d see if you find them more helpful too. Here’s the one that tends to hurt the most:

How can I get my life back?

During times of change we did not seek, this question must be with all of us, even when it's most impossible. It first roared into my head nearly 22 years ago when my cousin MaryEllen died. The thought that pounded over and over again was, “When do I wake up from this nightmare and find that things are back the way they were?” This must happen to you too when life brings you something you hate: when your relationship goes bad, when your job gets cut, when the doctor takes a deep breath before telling you about the test results.

In the last months, I have looked at my poor battered body and wondered again and again when I will get my life back. And as I begin this chemo period I trip into wondering the same—do I get my life back on 16 June? And I have friends who talk about when things “return to normal.” But many of these changes are irreversible—I will never ever be the way I used to be. I have crossed into new terrain, and parts of the old world are long behind me. I am learning that I do so much better without looking backwards. I think lots of our changes are like this—our deep desire to really go through unscathed, unchanged, to have the life we were used to. I feel that urge deep in my bones (especially today as my bones hurt so much) and I have come to find that question more poisonous than the chemo, and with no appreciable benefits.

At first the thing that holds us in these changing times is just the loss that piles around our knees. Every memory is the death of a life we weren’t choosing to alter. And instead of seeing the possibility of the newness around us, I think we focus on the losses that are so obvious. I watch it happen to me. Instead of liking this new haircut, I miss the curls I used to love. Instead of appreciating the open space of these next three months, I feel sad about the class at Harvard this week that will get taught by a video of me instead of me in person. My eye gets drawn to the hole in my life and not to the possibility of something new.

I am so much healthier when I ask instead, “I wonder who I’ll be next?” I can look at the losses scattered around me and face the changes in new way. I am in the middle of a Great Becoming. I’m not sure how it ends up. My life is transforming around me, my body is sloughing off its cells, my immune system is starting fresh. My changes have changed others in unexpected and unpredictable ways—I have clients who are spending more time with their children, friends who are exercising and taking better care of their bodies. We are all in the middle of becoming something new. I wonder who we’ll all be next.

When I begin to ask this question, instead of the focus on the brokenness of what has been (and is not coming back), I reach into the new emerging of what seems to be being born. I am more in love with the world than I have ever been, more tuned into the arc of a wave blown by the wind. I live in gratitude for my friends and family. I feel deep and enduring compassion for those who are sick or in pain. I have been those ways before, but they are growing in me each day and are shaping the new form of who I am becoming and what I will do next.

I will not be who I was. I will not return to normal. I will not move on and forget about this time. And if I could do all of those things, wouldn’t it be sort of tragic? Because boy has there been pain and misery on this path, just as there are on the paths of all of those who face changes they did not choose (which is all of us, right?). Wouldn’t it be a shame if this path of pain was a kind of loop track, dumping me off at the beginning of the journey, undisrupted and pretending I had never left home as I waited for the scars to fade? This path is taking me into a new place, and each loss is a sign of a piece of me I cannot carry into the future world. And I believe—I really believe—that each of us will be better next than we used to be.  This is not in a blind “everything happens for the best” sort of way, but in a deep belief in the human spirit to take pain and loss and metabolize them into development and compassion and love. Right now, my body is working overtime to be new; it is nearly a full time job. I will try to be present in the unfolding of it, holding the amazing delights of the moment when the pain stops and the world feels peaceful again, the joy of laughing over a cup of tea with a friend. I am becoming something new and unexpected. What are you becoming next?

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.