Photo shoot

Pointing away from the view to get better light

I am in the preparing phase as well as the busy phase now. I am starting to take new supplements to boost my immune system before chemo. I got my hair styled in the way I might like to wear it (or er, someone else’s hair anyway) for many months to come. And some time in the last two weeks, I realised I that Keith and I would need a book picture for our book jacket well before my hair grows back. I was not excited about a post-chemo book picture, so we needed to get a move on.

colour matching

My last book picture was taken by a local guy who specialises in portraits that are nestled in a location. Behind me in my book picture, you can see the little cottage/shed where I wrote the book. It feels like me, and I’m at home. I love that. The downside of this photographer—and it might be every single photographer, but I have little experience—is that I am constantly feeling wrong. “Move your chin up.” “Move your chin down.” “Smile some, a real smile. Really a real smile. Ooh, not any teeth though. Smile with no teeth.” “You look uncomfortable, move your body like this. No that’s worse. Do it the other way. No that’s worse too. Hmmm.” You get the picture. But Keith and I were moving at speed and so we didn’t have time to find a replacement.  It turns out that I did something better though—I found a distraction.

You can see my house over my shoulder

With two people in the picture, I got less attention. And with Keith as one of the two people, in his full shirt and pleated pants, I got way less attention. Now Keith was the focus. “Lean against the post. No, that wrinkles your shirt. Lean less. No but look comfortable. Oh no, not like that. And your shirt is still wrinkled. Let me fix that. Ok cross your legs the other way. No, that wrinkles your pants—looks like a giant arrow pointing at your crotch. Do something else. No, a different something else. Good. Now smile!” I just stood there with a genuine smile on my face this time, listening to my partner get all the flak. Isn’t that what partners are for?

too windy to be outside

One more aside. This photographer is great at placing people into a setting. But this is New Zealand and the settings aren’t always great for being placed into. On this day in a month with limited time, the wind was blowing too hard to be outside. So these pictures were taken inside a (truly stunning) house that has no special meaning to me and looks (from these pictures) to be a studio anywhere. I know cancer is supposed to make me stop sweating the small stuff. I know that’s one of its gifts, and believe me, I’m trying to harvest as many cancer gifts as possible. But this one is elusive so far. I still don’t have the sweet spot between knowing what’s actually important and what isn’t. Or ok, that’s wrong. I KNOW that it’s not actually important that we have a picture that says something sort of sentimental and New Zealand to me. But I don’t know how to let it go, now that I know it’s not important. I’ll let you know when we see the proofs…

 (You can see from these pictures that the house we were in is magnificent. But the light and the wind meant we pointed away from the outside view and elegance, and in toward plain white walls. Not the fault of the house or the photographer, just life, really...)

One month post surgery, here's how I am

Ok, the last blog was admittedly theoretical, but I am working to use all that we know about coping with uncertainty and transition and put it into practice during this uncertain transition for me. But people want to know how I am. So here goes.

I’m mixed. Ha! Don’t you feel well informed now?  Mostly I’m mixed trending to good, often to excellent. Some days are harder.  I am sore but nearly pain free (I take painkillers only at night) and I go for long walks with Melissa in the hills each day. I am back to working, which is so good for me. I have a full schedule of phone calls each day to design or coach or debrief the Leadership Circle, and I can feel my life lifted by these experiences. I laugh easily and often. I connect deeply with my clients and friends—maybe more deeply than I would have two months ago. I soak up the sunset and the calm still days and the blackberries in the park. I am learning to like green tea, as long as it’s mixed with some kind of citrus.

My body is coming back into shape though my reconstruction is not yet complete. (Good things come to those who wait?) Because the implant sits behind the chest muscle, it needs to be inflated over time. On Monday I flew to Auckland for the first of probably two such trips. It was the most surreal appointment I’ve ever had, as Stan found the valve he implanted under my skin and slowly, while chatting, pumped 50ccs of saline through a massive syringe and into a tube into the needle into my body. It looked everything like a bike tire pump. But I trust Stan and he takes my questions seriously and gives me straight answers.  He’s my favourite cancer doctor ever.

I have struggled more in the Wellington system and right now feel like I’m at a very confusing part of the decisions. We do in fact feel like a number in the bureaucracy of the public system—probably not different from what it feels like in an HMO in the US. It is hard to get the questions we have answered and between how busy they are and how busy I am these next three weeks, it looks almost impossible to sync up. Chemo is a clear go, and starts probably on the 24^th of March. Radiation is a question—two panels of oncologists have looked at my test results and recommended different things. The drugs after the chemo (or chemo and radiation) are a clear go—for five or ten years. I will need support getting through this storm.

I have had my last hair cut—which I love (if you’re in the Wellington region you should try the brilliant Rene at Renascence by the C). Rene knew that this is the last time I’ll cut my hair for a while—and that this is the cut from which the wig gets made, so it had to be good. Still, it was surreal to imagine that this cut might be my last hair cut for 8 months or a year, and that then I’ll emerge with spiky hair, shorter than I’ve ever had it before.  (I have had emails from those of you who have lost locks permanently and are now totally bald forever—and I happen to think bald men are beautiful—and I want you to know that I’m feeling your pain. And I’m utterly grateful that mine will grow back.)

My diet has shifted in some remarkable ways, instantly. I have given up refined sugar and white flour, just cold turkey. No cravings, no sadness. Sugar now terrifies me. I’ve always known it was poison, but now I know that cancer loves sugar and I am really not a fan of cancer.  I don’t mind eating chicken as much as I thought I would—if it’s your chicken or your life, that’s an easy equation (but I don’t cook with it or eat it with bones or anything).  I drink my carrot and ginger and plum juice with turmeric each day (cancer hates turmeric). I say dozens of times a day: “My body hates cancer and won’t grow it.” In the odd ecosystem of the breast (which is so hormonally active) cancer can grow. But cancer in your breast doesn’t kill you. In the rest of my body, I’m believing cancer won’t grow. And just in case, we’ll work on the diet and then toss the chemo and the drugs at it to be double sure. (I’m sure this diet will not be absolute, that I’ll indulge in birthday cake and delicious pastries again, but I bet I’ll never go back to the way I was.)

Mostly I live in a deep gratitude. I wake each day in the most spectacular place. I love the letters you send me when you are just thinking about me or thinking about something we have done together. (Even when I am too swamped to answer them all, I love them so much and read them again and again.) Aidan and Naomi are thriving in high school and doing really well generally. My dogs make me laugh. As long as I don’t give into the Bad Questions and dip into a cycle of despair, I am more open to love and delight than ever. And if it’s all tinged with a kind of bittersweet, that feels ultimately truthful. The bitter and the sweet create one another. Giving ourselves over into the fullness of it feels like it makes more things possible, feels like we’ll spend less of our time and energy forcing the dark away and just let it in, knowing that it’s frightening and sad as well as soothing and delightful.  These next six weeks are a contrast in opposites too. I’m off to Sydney next week and I’ll work like crazy for three weeks (mostly out of town, mostly swamped) and then come home and begin the long quiet chemo time. I am strong and I have a fabulous web of friends all around me, all around the world. Surely that will help me get through. Surely your strength and love become a part of me as my strength and love become a part of you. We make each other better. We can each work to make every day count. We can each work to be a little more open to the pain, which makes us a little more open to love. Drink your green tea, throw out your soda, and tell someone how much you love them, even if that’s a little frightening. This is the way we know we are alive.

Basins deep and shallow

Jasper cooling off

Before my life spun into a different direction, I was thinking and writing about the Five Percent by Peter Coleman. Coleman writes about the intractability of a small number of conflicts (local and global) and uses ideas from complexity theory to make sense of them. It’s a fantastic book and it shapes some of my thinking about my work—and it turns out to shape some of my thinking about my sense of my health and my life as well.

Coleman writes about attractor basins, and the way our sensemaking creates little patterns of stories that all of the data seems to go into and then get caught in.  He talks about it with conflicts between people, but I have been noticing it lately in my own sensemaking and the sensemaking of those around me. I am watching how much of our pain is self inflicted, and how unhelpful that is in a world that offers plenty of opportunity for pain as it is.

landscape with attractor hills...

I have had the opportunity lately to watch myself cycle into periods of peace and then drop like a stone into periods of despair. We probably all have that experience of ourselves, but my cycles are rather shorter now than they ever have been. I am not opposed to the darkness of the dark—this is a life and death illness, and while my cancer is better than many, it is unfortunately worse than others (and obviously worse than not having cancer). It seems reasonable that I would find my days of darkness, especially as new and threatening information comes along. In some moments, I fall into what looks like a self-organized basin of misery and every single thing gets pulled into its magnetic pull of gloom.

Some of those experiences are relatively brief—a good hard cry with a friend and then a walk on the beach. Those feel like a dip into a shallow basin of darkness from which I can emerge soon. Some of those experiences are much longer and I find that I struggle to smile for hours or even days at a time. These feel like deep pits with slick sides and a narrow point at the bottom—everything slips down into misery. I know that my life is no less wonderful, that Aidan is no less amusing, that the beach and the hills are no less beautiful, but in those deeper basins of despair, I can’t pull up enough to make sense of any of that except through the particular vision of woe and potential loss.

There is a bigger and wider basin of emotions that seems to hold much more range and where things get all mixed in together. I see this as having a wide mouth and a relatively flat bottom. Emotions mix and change there freely, but the valence is towards gratitude and love and delight. Sadness is a piece of that experience, but it doesn’t sweep through and take the others to a narrow focal point; the aperture remains wide. This is happily a more frequent home for me. I like it much more and it seems much more suited to the multi-variance of life in any case. The pit of despair seems not only miserable, but unhelpfully simplistic.

I wonder whether I have always had these different modes, whether you have them too, or you have your different ones. I wonder whether there is a kind of a patterning of our emotions so that some get deeper and more narrow basins and some are wide and flat and variable. Coleman writes this way about conflict—the more intractable it is, the deeper and more narrow the basin is.

So, then the question becomes: What can I do to widen the basin of the misery or move out of it into the other basin which is more rich and varied? And, lucky me, I have had plenty of cycles to be able to pay attention to the questions that spin me down.

One of the things Coleman points to is the way that deep attractors become simple—they take a very complex situation with lots of diversity of thought and opinion and perspective, and they build to one very simple black and white story. Boy do I know that feeling. I get locked into a “cancer sucks and is ruining my life” kind of story and the basin narrows and deepens. (The other set of questions that pulls me in are the looking backwards question: How did this happen? Why didn’t I catch it sooner?” These are unknowable and just spin me down into misery)

Then the Coleman ideas get even more helpful. His first point: “Respond to dynamics, not events” is cognitively helpful and it’s what this repeating pattern of cycles is allowing me to do. I think of these as events (like when the oncologist told me there was a 10-20% chance the cancer had already metastasized) but really that is just part of a dynamic—I hear news that opens up the possibility for a shortened lifespan, I ignore percentages (because honestly, in the moment, all percentages are bigger than they should be when you’re talking about your lifespan), and then I fall into despair. I had thought I was getting better at resisting this pattern by gathering information so that I would no longer be surprised, but since I am so often surprised in doctors offices (and since Jonathan asked, teasingly, “When do you think you’ll know enough to eliminate all possibility of surprise?”), I think that’s probably a losing strategy. Hooking into the pattern I’m seeing rather than fixating on the data (the event) might be a very useful thing to do. Watch this space to see if I can manage this cognitive exercise at my next oncology visit next week.

 

Then there are two points I’m practicing each day. Coleman says “Respect the logic of the conflict.”   This is a thing I’ve noticed about myself and have asked for from my friends: respect my fear and dark moods without trying to jolly me out of them or, in the moment, tell me that 10% is a small number and that I should focus on the 90% of women who don’t die in two years. Yes of course they’re right, but as Coleman suggests (and I can easily support), those ideas bounce off fast.

The other point that seems core to me right here is Coleman’s: “Open it up.” This is where you make careful use of the complexity of the situation and weave it through the simplicity of the deep basin. I have taken to listing the things cancer brings into people’s lives that they love: the deeper relationship with family and friends, the ability to have conversations with friends, colleagues, and clients about death and passion and purpose. It seems like cancer has the chance to be awfully developmental. And, as Aidan said as we were walking towards the bus stop this morning, “You have cancer, Mom—now you’re not boring at all!” Cancer is not a simple disaster; it is a piece of life experience that connects me to pain and to other people and deepens my attachment to life and joy and purpose. I am trying to “open it up” to hold on to the complexity of it as it weaves through my life. (And I’m using the Anticancer book to create a body so hostile to cancer that it closes it down!)

So this is me on a day so hot (for Paekakariki) that the sea fog has rolled in and in the last 20 minutes has obscured the islands in front of me. Here is the downside of a hot and still day (see, each thing has its light and dark). In another few minutes I won’t be able to see the car in the driveway. And then the wind will shift and the fog will blow away and it’ll look different again. Like life, really, except when I get caught in the basins that don’t allow the fog to lift.

Measuring lives

the full moon setting into the heart of a mobile from my dad. dawn rising

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I woke early this morning and watched the full moon sink, red and plump, into the sea at dawn. I lived the first four decades of my life without knowing that at the full moon, the moon rises just as the sun sets and it sets just as the sun rises. Seems like vital information somehow—how did I miss it for all these years?

This has been a grim week. I’m clawing my way up out of the dark on this lovely day and thought I’d spend some time with you thinking about the various measurements we use to think about our lives.

We say all the time in educational research that not everything that counts can be counted and not everything that can be counted counts. But still we measure what is easy to measure, and then we believe what was measured was the most important thing. And that has messed with us in schools and in businesses and in every other place we want to ask: How are we doing now? What should we be doing better? 

It has been occurring to me that much of what we measure in a life is length. Someone who dies at 30 is a tragedy; someone who dies at 98 is a triumph. The Queen sends you a birthday card if you make it to 100. I’ve been wondering about a more three dimensional way of measuring life—the volume approach.

Length matters. We know this. We do our best to improve this. I don’t smoke. I exercise. I eat well (though it will surprise many readers to know that I had chicken for dinner last night for the first time in something like 15 years). Important pieces of this factor are out of our individual control. You do what you can and hope luck and genes carry you the rest of the way.

Height matters at least as much. For me, height is about the number of lives we touch, the way the world is improved by our presence. There’s no good measure for this—the number of likes on a facebook posting is no proxy for the number of people who are different (hopefully in a good way) because of you.  I’m trying to figure out how we can get a better measure of this and keep it more in the front of our minds. One way is to mess with length of course—funerals are places where these stories rise to their full glory (this is unhelpful for the person in the casket though). Retirement parties are great for this too—I wept my way through my father’s retirement party hearing about all the lives he’s changed. Still, I think that comes too late as a helpful measure to guide our days. Some birthdays do this too: On my 25^th birthday, my students (high school seniors, maybe some of them reading this now in their mid 30s—remember when 25 was unimaginably old?) snuck into my classroom before school with 90 helium balloons, one for each student I taught. Each ribbon on each balloon had a message from a student. Have I ever been so moved? I still have the cards in a box near my desk. Getting cancer seems to be a decent proxy. I am thinking I might print out all the emails and cards from people who have written to me saying that their lives were made better by me and hanging them from ribbons in my study or my bedroom, in both homage to those students nearly 20 years ago and also to hold my attention more to height than to length. Height surely matters more even though it’s harder to measure.

Depth matters too. I think this is about the power of the emotions we allow ourselves to feel, the measure of our love for others, the unbridled sense of awe at the sunset, the wholeness of our compassion when meeting with another human being in pain (or when looking with grace at our own pain and failures). On this measure, living in New Zealand is a bonus because I am so often swept away by the power of the landscape. Loving so broadly is a bonus because I am so often swept away by the depths of my love for my friends and family and clients around the world. Even my perhaps over-active negative emotion meter (last night Naomi and Melissa discussed whether I am totally over dramatic in my negative emotions) is a bonus (if one were to believe them that I am) because I get to experience emotions in surround sound often—the dark emotions of the cello along with the floating delights of the flute.

I had coffee yesterday with a friend whose cancer makes mine look like a mosquito bite. Her life, measured in length, is on the tragic scale. She is surrounded by a landscape of snow-capped mountains of loss. But her life measured in volume is not tragic in any way; in fact, it far outstrips the volume of most people who live long but ordinary lives. She has helped make the world better for thousands—maybe hundreds of thousands—of people through her work in aid and development NGOs. She has loved deeply and well and is adored and respected by those who are fortunate enough to know her. And her eyes shine when she talks about the tuis and the morporks in the bush, about doing homework with her kids, about watching the waves come and go. She has mothered her children so well that she will live through them and carry on into generations she will not see. She will live through so many of us as a model we can live into, as a person who loved well and made the world better for others. I want to hold her life—and mine, and yours—in their fullest, three or more dimensions of bigness. And I want to remember even in my darkest days what they teach anxious teenage boys in health ed: size matters, but it’s not the most important thing.

Crystal balls

I was looking forward to my oncology appointment yesterday in the way that sentence is possible: there would be progress and information and clarity. These are things I crave right now, probably more than I have ever craved them before. Alas, it was not to be so, and I left so knocked off my perch that I needed to go home instead of closing the leadership program Keith and I had been teaching.

There were a variety of unsettling things about the appointment. Some of them I totally expected: hearing about chemo is truly terrible. Everything you think about how bad it is is an understatement. Or at least, is a possible understatement. They have to tell me every single thing that might go wrong and the various (few) ways to protect against it. The body is under siege for three months, and you want the cancer to lose the battle as the rest of you survives. But sometimes that’s a margin call.

Some of them were more systemic: After having had my surgery in the private health system here, where Stan (my fabulous surgeon) is incredibly proactive and available, the public system feels much more like a meat grinder. We were met by a lovely young interning doctor (studying to be an oncologist) who said she’d “begin” our appointment. She was fantastic—warm and engaging—but held the tough questions for the official oncologist we thought we were seeing. After 90 minutes with her, she said, “Well, I think Catherine [the head oncologist with whom we thought we would be meeting] would at least like to meet you, so let me see if she’s free.” And we had 15 quick minutes with the oncologist who will be the one we’ll see again (because the intern will rotate into someone else’s team by the time the chemo begins). In the meeting, there were a couple of things we were confused about, and it was both hard to get clarity in the meeting and is also frustratingly unclear about how to get clarity in the future. The next time I’m scheduled to meet Catherine it will be moments before the chemo IV gets hooked up. In between, I’m to talk to a regional oncology nurse. I am adrift inside the public system and feel amazingly fortunate to be able to mobilise my fabulous network (which I did, on the train home).

The biggest issue was about whether to have a full PET-CT and bone scan to see whether there are established tumours that have already metastasized elsewhere in my body. It seemed a heavy dose of both radiation (which causes cancer of course) and uncertainty for the very small chance that these tumours might be active elsewhere. (And silly me, I had thought that this would actually be an impossibility since my lymph nodes were clear.) Because we were going quickly, we must have misunderstood Catherine’s answer that there was a 10-20% chance that these tumours had already metastasized. I asked a follow up question, she affirmed that number, and we left the appointment thinking that the odds of my living five more years were smaller than we had thought they were going in. I wept on the platform as I was waiting for the train.

This number is wrong, by the way. Very wrong. You and I can both breathe again. I have followed up with Stan and with Kathy the miracle oncologist in the US, and Mom has done research, and I have breathed through it. The odds that there are already tumours elsewhere are far far less than 10%. But, in fact, they are greater than the 0% I was thinking. And so here begins a theoretical question that is very very real to me right now: How much do I want to know about what might happen in the future? How much expertise to I want to use to predict the unpredictable (and complex) world I’m living in to. Keith and I have just written a book about some of these ideas, so I have a really strong theoretical grasp on it. But now it’s a life or death question as well.

You see that I am far from alone in pondering this question. The New York Times today had a cover piece (at least on their homepage) about the value of predicting breast cancer via mammogram (http://www.nytimes.com/2014/02/12/health/study-adds-new-doubts-about-value-of-mammograms.html?src=me&ref=general). The conclusion there (as in the piece I posted a couple of weeks ago) is that early discovery of breast cancer with mammograms leads more to unnecessary treatment than to saving lives. Knowing as much about breast cancer treatment as I now do, that just sucks because surgery and chemo and drugs are miserable. And still, wouldn’t you want to know if there was a tiny tumour growing in your breast? Wouldn’t you want to know if you had DCIS, the very earliest signs of cancer? Wouldn’t I have wanted that before, wouldn’t I have chosen to put myself into the potential over-treatment category so that I could also be in the potential life-saved category?

Now I am looking at a full body scan with a heavy dose of radioactivity, that will show me whether there are any tumours of 5mm or more elsewhere in my body. There are lots of risks of false positives, which (like mammograms) lead to more tests, to the horrors of waiting, to the unimaginable (so far to me) terror of seeing the envelope of my life shrink down to less than five years, (For a brilliant piece on the terror that comes from waiting, see this http://www.theguardian.com/lifeandstyle/2014/feb/12/henning-mankell-diagnosed-cancer). There is a much simpler, new

test (not yet available in NZ but Mom has figured out how to get it) that will tell me whether I have Circulating Tumour Cells (CTCs). If the test shows that you have none, that is a very good sign for a long life. If you have two, you should start to worry. If you have four, the research suggests your chances are grim indeed.

And the readers who write to me with their stories and their miracles will tell me that even after the data, you have only statistics. Only other women who have died before you and ones that are still alive. Every ten-year study of what percentage of women died is 10 years or more old.  A decade is a long time in the world of cancer. A percentage is a study of a population. I am a person and not a statistic.

Stan was clear on the phone last night that I might already be in the nearly 50% of women with stage 2 cancer who would never die from it without a single extra treatment. 50% of us leave surgery cured and don't need chemo and don’t need tamoxifan with all their associated miseries. But which 50%?

The tiny percentage of women with stage 2 breast cancer that leave surgery with metastases already in other organs have a dire prognosis. But there is powerful evidence that in some (very few) women, those other tumours just go away. There are endless stories of people given six months to live who dandle their grandchildren on their knees 30 years later (and I am grateful to those of you who are reading who have shared your stories with me—I call them up like a guide star when I am awake in the middle of the night). How does one get into that group?

We cannot get information today that will tell us about our future. No matter how good the information is (and while cancer information has progressed so dramatically, there are still so so many things experts do not know), we cannot peer into a medical crystal ball and see whether this thing or that one will kill us and when that might happen. So how many crystal ball proxies do we want, and at what cost? How many thousands of dollars of tests, how much radiation, how much terror?

So I sit with this question today, as the sea froths white and the clouds disappear over the hills. I drink my green tea and eat my heavily-tumeric-laden curry (ahh, the amazing benefits of turmeric and green tea—not necessarily together!). I want to guide my future well. I want to find out and do the responsible things. I want to know what there is to be known and let emerge what there is to emerge. I am taking advice from the experts who disagree about what is the best course of action. (There is also broad disagreement about radiation, another kind of insurance for the future that comes with a price, but I’ll think about that next week.) I am reading articles my mother recommends and staying away from the ones she says not to read (and what horror—and love—to protect your daughter from these frightening studies by absorbing them yourself). The future is not knowable, and yet it is influence-able. And in the confusing space between those two things things, I feel gratitude for those I love and delight for the opportunity to be alive each day.  I drink my tea and stare out at the waves.

Hi ho hi ho, it's off to work I go

I have returned to the working world this week, teaching a leadership program for a beloved client here in Wellington. I was anxious about this. These are long days and teaching is a high energy, full body experience. I needed to wrap my head back around the content and be there for the participants and not let Keith down. (Though in truth, Keith has always been clear that I could leave at any point and he and our other partner Jim decided long ago that Jim would just be nearby, doing other things, so that he could step in at any time if I got overwhelmed or exhausted. I have very very good partners.)

It has been both more exhausting and more life giving than I had imagined. I admire these participants and the work they do.  I am excited about the ways our work together might help make their lives better—and help them accomplish more of the work that they and I care about. I love the work I do and the things I teach and the people I get to work with, and I was overcome with how lucky I am to get paid to do work that matters so much to me. I was more comfortable in my evolving and healing body than I feared I would be, and I got into the flow of teaching again (after a few minutes of self-conscious nerves that are unusual for me). I wasn’t at 100%, but I felt I was doing a good enough job and supporting them in important ways. This is a helpful reminder about the ways my work keeps me zingy and alive, the ways the relationships I develop with the participants feed a piece of my heart and my soul.

And at the same time I was exhausted. I didn’t notice the pain when I was in the front of the room, but it came thrumming back afterwards. I missed my nap. I was nearly incoherent at the end of the day and weepy before bed. The participants and I struggled to find a way to talk together about my cancer—they wanted to express their care and their curiosity, and it's hard to know how to do that. We were awkward at first trying to find which words we were each comfortable with (clearly some people hate to say or hear the word "cancer") and what information was public versus private. I have been finding the many ways having cancer is  a connector to people (like you reading this now). It turns out it is also a kind of divider as others and I need to find a whole new rhythm in our connection, as we navigate the new territory of life and death and sickness and prognosis and fear and pain. Isn’t it funny that even in my work—where we so often talk about whole-bodied and whole-hearted experiences—that these topics are rarely a part of our conversation. We so rarely talk about death at work; this makes me wonder how much we really talk about life at work.

Even with all of this lovely focus on getting away from the cancer and into my work, I am still feeling the way cancer controls my life. I had been clear with the folks who schedule the doctor’s appointments that I was teaching these three days, but still, the only appointment with the chemo oncologist they offered me was Wednesday morning—the last day of this program.  And with only the moment’s hesitation that it took to sigh, I accepted the appointment, took Jim up on his offer to stand in for me, and told my participants that I’d be in as soon as I could be. So tomorrow begins with a trip to another doctor. I think (I hope) there will be no surprises. I know that I will need chemo, know that it’s an important part of increasing the chances that I will live a long life. So I am not sure really what terrors this doctors appointment holds, but I also know that now doctors and fear are braided together. I remember with great fondness the first 43.5 years of my life when doctors weren’t terrifying (probably they were terrifying the first 10 years, too, now that I think of it).

All of this helps remind me of how vital a part of our lives our work should be and how sustaining of our biggest selves. Work is a life or death matter for us all, because so much of our short lives are spent on the job. I feel overcome with gratitude today that the days and weeks and months I spend working are so bursting with meaning, surrounded by people I love to teach with, clients I love to teach, and ideas that make people’s lives better. May your worklife be so blessed.

Naked mole rats

I get spun out for the most bizarre set of reasons. Over the last week I have been coming to deal with what it will mean to have chemotherapy. Some of the issues I have with chemo are the Big Issues: what does it mean to put a bomb off in my body? What are the long term implications of this intervention? Some are even more terrifying: What does it mean to be thinking of myself as so at risk for metastasis that chemo is the right choice? Some are fear and sadness woven together: the discomfort, the loss of work, the loss of my ability to travel, the loss of our plans for Aidan’s Bar Mitzvah. But oh, how it pains me to admit, that the idea that I fixate on most is the loss of my curls.

I should have bigger concerns than this. And yet, with each form of hair I realize I will lose, I have a new surge of misery (see footnote one). My hair—which I only discovered was curly 3 short years ago—gone (see footnote two). This feels impossibly tragic. Then the horror of realizing I would lose my eyebrows. And my eyelashes. This feels disfiguring—it will change totally the way my face looks. I realized that my horror was about looking (and here’s the rub) like a cancer patient.

I knew that this had gone too far when last night I looked at my reflection and realized I would lose my nose hair. And then I began to find myself teary and feeling sorrowful about the loss of my nose hair. What would breathing feel like? What about when it was cold? Wouldn’t that sting to breathe cold air without any nose hair protection? Wouldn’t my nose feel and look different without hair?

Now here a note to those who love me. If you ever try to talk me out of my misery at a time like this, it will go badly. The more you tell me—no matter how lovingly—that I will live well without my nosehair or (worse) that it will grow back, the more I will defend the horrors of nosehair loss. I will dig a pit of despair about all the ways my nosehair has been a vital part of my identity. 

Now I might (and probably will) come to think my absurd concerns are absurd. And you are welcome to join me in looking back at concerns we now both believe are absurd. But if you try to get me to believe that my current concerns (no matter how absurd) are not concerning, you’ll back me into a bad place instead of helping me out. Counter intuitive, I know, so I’m not claiming logic (this is after all a post about nosehair) but I’m letting you know.

In the depths of my misery about all of this hair loss, I began to think about the naked mole rats Aidan used to love so much at the National Zoo in DC. These are horrible looking creatures for many reasons—they are blind and constantly bumping in to things, and they tunnel in the dark, backwards, they have freakish faces—but perhaps the most startling is that they are totally hairless.

I went to Wikipedia to find a vision of these dreadful creatures—these creatures that reminded me of my chemo-poisoned self. In intended to wallow in self-inflicted misery. But, in the many things I am surprised to learn on this breast cancer journey, as I read about them, I made a totally new discovery:

Naked mole rats appear to have a high resistance to tumours; cancer has never been observed in them.^[19] …On June 19, 2013, scientists reported that the reason naked mole rats do not get cancer may be because they produce an "extremely high-molecular-mass hyaluronan" (HMW-HA) (a natural sugary substance), which is over "five times larger" than that in cancer-prone humans and cancer-susceptible laboratory animals.^[29][30][31] The breakthrough scientific report was published a month later as the cover story of the journal NATURE.^[32] A few months later, the same University of Rochester research team announced that naked mole rats have ribosomes that produce extremely error-free proteins.^[33] Because of both of these achievements, the journal SCIENCE named the naked mole rat "Vertebrate of the Year" for 2013.^[34]

Suddenly, this “Vertebrate of the year” for 2013—which had been my poster mammal for the horrors of my cancer treatment—looks like the poster mammal for my long life.  I ended up giggling in bed over their pictures and hoping that I have multiple things in common with these creatures (but I would like to pick which things they were…). This then is what life feels like: real tragedy, manufactured (self-generated) tragedy, and laughter. I think if you listen really well, you can hear the naked mole rats giggling.

Silver lining footnotes: Chemo benefits: the untold story.

Footnote 1: The first person who introduce this idea of the loss of all body hair to me was the nurse you might remember reading about last week (the one who thought that if I “slapped a nipple on it and pumped up my left breast, I would have great boobs). She also told me she thought I could really carry off bald, and she leaned forward and talked in a somewhat hushed tone about the delights of “a free Brazilian.”

Footnote 2: The broad consensus is that after chemo, hair grows back curlier than it was before. This leads me to think of my Great Grandmother Clara, who as a child saw her sisters get some kind of illness (pneumonia I think) and lose their hair just to have it grow back curly. The story in my house is that Clara used to sit with wet hair next to open windows in the winter, wishing and wishing for the disease that would make her hair curly. I intend to be in daily contact with her spirit as I go through chemo because I believe she would willingly sacrifice hair for a year or so to get better curls for the future.

Home

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Not citizens yet...

I once upon a time had the urge to turn the first years of this blog (the kiwibergers years) into a book about the search for home and what that meant to me. Coming to a new country, uprooting our lives, re-piecing our identity as we gutted and rebuilt a house by the sea. It looked like a lovely book to me.  Alas, as with my fiction, the universe (here in the guise of literary agents) thought it didn’t look like a lovely book to it. But the notion of home—what it means, how to find it, where it exists (inside? Outside?) has been a really strong question for me.

These days I’m obviously blogging about something quite different. Here the questions are more about life and death than the search for home, though perhaps at their root they are the same basic quest: who am I and where do I belong? And here, in the messy middle (or really the terrifying beginning still) of the cancer story, the home question from the first part of the blog has come to what might be a satisfying close.

new citizens with the Governor General and his wife

Yesterday was Waitangi day here in New Zealand, our national day. (Note here that I say “our national day” which is materially different than the way I used to think about it.) It is the celebration of a treaty that was meant to unite a variety of Maori iwi (tribes) and the English state. It is the foundational document of this nation, and, like many foundational documents, has been argued over and betrayed and held up as a promise. I love the document for the promise it holds—that the English recognise that the Maori are the first people and that they have the rights to their land and culture and language and resources and that the English want to share and thus will deal fairly with the Maori and protect them and give them all the benefits of English citizenship. It is actually an amazing document. There have been disagreements about it from the time the ink was dry, and the colonisers have done what colonisers do and it has been abused like mad. But in the last decades, those abuses have been understood and justice has been slowly, slowly unfolding. It is a document that still underscores a promise: we will be fair with each other and we will be one people in this beautiful land. I am very moved by this promise and by the human and awkward and only somewhat-successful attempt to live into it.

On this Waitangi day, in a small ceremony at the house of the Governor General, my family became citizens of New Zealand. We have chosen this country for so many reasons, but one of the things I notice about it now—and maybe notice more today than yesterday—is that it feels like home to me.

The idea of home has gotten way more complex for me in the last years. There are so many ways I will always be foreign here, even with a passport with a silver fern on it. It’s still on the streets of Cambridge that I feel most familiar, like that place is part of me and I’m part of it. It’s in DC that I have my biggest packet of memories. It’s in the US generally where the accents sound like mine, the scents are familiar, and the history and geography are second nature. The seasons, too, happen at the right time of the year, and the weather is always continental. All that is a part of home, but there is something beyond familiarity has brought me to think of New Zealand as home.

From the Waka at Waitangi in January

There is a kind of admiration that comes from being an immigrant, maybe.  I’ve seen it always in the US immigrants. Now I feel it in my own belly. I picked this place and by God I will love it here.

There is the physical beauty of the place. I am more in nature here than I have ever been. Last night I looked at the moon and made a quick calculation about what it will look like when I next head out of town. I often go away from home and think, I’ll be back when the moon is just past full. I know I’ll watch it wax and wane as I count down the days until the end of chemo. I would never have judged time by the moon in the US. Ever.

 There is the culture. My eyes fill with tears when a meeting opens with a Maori blessing. My heart actually beats faster when I see the carvings of a Marae. Perhaps there is some deep craving I have to feel the modern world and the ancient world more fully joined. Here the violent divorce that happened in most places between the indigenous and the colonising has, for many reasons, created a better prognosis for the healthy relations of the children than in any other country I know. Perhaps it makes good sense that here in the first nation to give women the vote, fairness is a more universal value.

I am a citizen of the US. It is the place of my birth, my first 35 years. I went to school there, met my husband there, had my kids there. It is the place where a part of my heart will always live because my family and many of my best friends live there. It is the place that crafted who I am. It is a beautiful country, troubled in many ways, working always to find a better tomorrow. It is the country my grandparents and great grandparents picked as they moved from Ireland to craft a better life for themselves and their children.

Me after Aidan dodged out of the camera

I am now a citizen of New Zealand. It is my home, the place where my children have grown up. It is where I feel most at peace. It is the place I recrafted myself once and am recrafting myself again. It is the place in the world about which I am most patriotic. When we win a medal (any colour at all) in the Olympics, I cry. When we lost the America’s cup this year, I was gutted. When I see reference to my tiny country in a movie or book or the NY Times, I get excited. It is the flush of new love, perhaps, but it seems an enduring new love.

I have long wondered whether I was the granddaughter of Irish immigrants or the grandmother of New Zealand immigrants. Somehow as of yesterday, I get more fully that I am both. And I get more fully that we come from a home; it lives inside us and shapes who we are no matter how far we move from it. And we choose a home. We change as we let the new place weave into us, as we notice what new possibilities emerge in a new world.

All of this is made more poignant by the cancer. Michael and I took a deep breath before getting out of the car—we did not expect to become citizens while dealing with my mortality.  I note that most of the pictures show me from the left—my in-construction side (you won’t notice, but I sure do). I note that when the Governor General talks about planting trees here, I wonder how long I’ll be around to see them grow. We went out for dinner afterward at a place we had been to in December and I looked in the mirror and thought about how inconceivably different I am now, eight weeks later.

Life is a series of choices that we make, and a series of things that happen to us. It was beautiful, in this season where the focus is more on what happens to us, to be living into the choices we are making.  The Governor General yesterday, in his address to the thousands gathered on his lawn to celebrate the day of the treaty, concluded by saying:

The speech, far in the distance

Earlier today, we hosted a citizenship ceremony in which 17 new New Zealanders took the oath or affirmation of allegiance….This is the fourth time we have hosted a citizenship ceremony at Government House, and each time I have been impressed by the diversity of cultures, ethnicities, ages, knowledge and experiences they bring to our wonderful country.

While all new citizens swear the oath or affirmation individually, some were joined by other members of their family; husbands, wives, partners and children who also became citizens at the same time.    This, in my view, is in the spirit of those who signed the Treaty of Waitangi and everyone who has settled before and since that time.

Whether you or your ancestors came to New Zealand by waka a thousand years ago, by a sailing ship 200 years ago, by steamer 100 years ago, or by aeroplane 10 years ago, they came seeking a land of opportunity where they and their families could live in peace.

As the last habitable place on the planet to be discovered by humanity, New Zealand is a land of immigrants.  As New Zealand historian, the late Dr Michael King, once said: “In a country inhabited for a mere one thousand years, everybody is an immigrant or a descendent of an immigrant.”
And on that note, as we celebrate Waitangi Day—our national day—we celebrate all of the things that are right with our country, and welcome into the fold our newest New Zealand citizens.  Also, we recall the contribution of all those New Zealanders, who have made our country good and great.  Kia ora, kia kaha, kia manawanui, huihui tātou katoa.

I am moved by those immigrants who came here 1000 years ago in double hulled waka. I am moved by my grandmother who came on a ship to the US as a kid. I moved by those who are forced out of their countries by war or poverty. And I am moved by all of us who quest for where we belong, where we want to raise our children, where we want to plant trees that might outlive us. On the stillness of this grey February summers day, I am grateful to be home.

You can read the rest of the Governor General's speech (and learn more about Waitangi day) here.

 You can see two different articles about the citizenship ceremony here:

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11197714

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11197799

And if you watch carefully, you can see a glimpse of me on TV here:

http://www.3news.co.nz/New-Kiwis-celebrate-Waitangi-Day/tabid/1607/articleID/331249/Default.aspx

Change in the weather

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When we first came to New Zealand years ago, we were amazed at how much people talk about the weather here. You’ll find blogs from years ago marking our surprise about this. One of the common explanations is that we were used to “continental weather” and not “island weather.” Continental weather rolls across big land masses and is more predictable and more stable (though try telling that to the folks in Atlanta this week). Island weather is pushed around over the sea where strange things happen to weather and so it changes faster and less predictably than continental weather. This is a place where a southerly gale in the morning can be followed by a northerly gale in the same afternoon.

Turns out that cancer means that my internal weather is island weather. While the overall patterns tend to sunny and warm, the dark clouds can blow in without warning; sometimes the gales are ferocious, and sometimes the fog is impenetrable.  Last night I fell asleep thinking about how helpful it was to have such hormone receptive cancer—get rid of estrogen (its food) and it starves. Awesome.

This morning I woke to emails about the side effects of starving the rest of your body of estrogen: early menopause, depression, brain fog, heart problems, early onset Alzheimer’s. Ghastly. It’s as if the female body has the sense that without estrogen, it’s time to pack up and move on. The fog closed in.

I am finding that my sadness has different qualities. I am more often near tears than I ever have been; I find that sometimes a phrase catches unexpectedly in my throat and my eyes overflow almost without my noticing. Generally it is a rich and full sadness, woven through with joy and loss and delight and beauty. A poignant and bittersweet love for life even though we are all going to leave this spectacular place at some point. More rarely—but still regularly, alas—the sadness thins and becomes brittle and won’t associate with joy. It becomes dementor sadness that sucks the joy out and won’t allow other emotions to live alongside it.  This I guess would be despair. I hate the things that well up with despair.

I hate that when Aidan was writing his obligatory essay about what he did on his summer vacation, he had to ask me what stage my cancer is. I hate that it hurts to sleep. I hate that my body is unfamiliar to me now. I hate that a snide remark from a teenage girl can send me into tears, fleeing the dinner table. I hate the green tea I am drinking religiously. I hate that the walk to Melissa’s leaves me so weary. I hate that I can’t yet lift the cast iron skillet. I hate that I had to cancel three months of work I was excited about. I hate that a quarter of us will die from the bizarre quirk of cells that don't remember to die themselves. There is so much to hate about cancer.

Dr Servan-Schereiber (who wrote Anticancer) talks about how despair feeds cancer, and I can say that the feeling is mutual. At each new piece of news, I can feel my perspective narrow as the fog settles in and hides the bigger landscape. At first that fog was, in addition to miserable, also terrifying because I thought maybe it would settle in for a while. Now I’ve seen the weather come and go and I know that the fog of despair is as temporary as it is unflinchingly bleak. Each round now contains the weight of the other rounds, but it also contains the clear memory that it’s temporary. But when the despair is here, I am lost for a little while before I am found.

And God help the person who walks in and tries to cheer me up right then (sorry to those of you who have tried so lovingly). This is a time for hunkering in to join me under the cloud cover and cuddling against the chill, not a time to try and change the atmosphere or convince me it's not so bad. Later I’ll be able to listen to reason and solicit data and stories (solicitation request below). In the fog I just want a hand to hold through the misery that looks, temporarily, endless.

And then the wind blows and the rain howls and the picture might stay dark, but it begins pulsing with other possibilities. Tonight it would help me make sense of my bewildering landscape if any of my sisters in breast cancer will either comment below or email me about the role of the estrogen blockers (whether you went with tamoxifen or surgery or an aromatase inhibitor) in your life (mood? brain power? sex life? sense of joy?). This morning I couldn’t have heard your stories in the deafening silence of the fog. Tonight I crave them in the slanting light of sunset. Tonight I am as in touch with the things I love about my life as the things I hate.

I love that it will never be January 2014 again. I love that I get messages from people all around the world who tell me that I’ve made a difference in their lives and that people pray for me in at least half a dozen languages. I love that I fall asleep listening to the sound of the waves. I love that Aidan reads me Harry Potter when I lie down for my nap. I love the foam in my coffee in the morning. I love that Dolce curls up next to me as I type and moves into my lap if I cry. I love the taste of a fresh tomato when I eat it warm in my garden. I love that Michael loves me a little more now that I have cancer than he did before (and he loved me a lot then). I love that Melissa saw a pod of dolphins while she was waiting for my plane to land yesterday. I love that Naomi and I both took pictures of the sunset tonight—from my bedroom—and then compared them with the pictures we have taken at sunset the last two nights to decide which night was the most beautiful (it was a draw). I love that I feel more alive than I did in December.

The sunsets are more beautiful on a cloudy evening, and they get more beautiful as the light fades. These are just some things you discover about the beauty and mystery of the weather pattern here on this peculiar island of mine…

Changing reflections

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Today is my follow up appointment with my surgeon. I am nearly two weeks out of surgery, ten days out of hospital. I am making the journey to Auckland alone, the kids in school, Michael at work. I think this is the first visit I’ll have to the breast clinic without being terrified.

First day of school

It is also the first day of school for my kids. Today Naomi begins year twelve, and Aidan begins high school. They dressed in their school uniforms, Naomi with a jaded ease and Aidan with the flutter of anxiety that marks his new beginning. Aidan has been most traumatized by the fact that his brand new backpack didn’t arrive in time for his first day of school. As I tried to help him make sense of this (“Is there anything I can do to help you feel better about this?”) he turned to me in disbelief. “Mom, you know that the thing I’m really anxious about isn’t really my backpack. The thing I’m really anxious about is starting high school! The backpack is just the focus of my attention right now.”

This story is ironic for so many reasons. Perhaps it is most poignant because a speech I’ve given to thousands of people across three countries focuses on a trip I took the Grand Canyon, when my attention was totally captivated by Aidan’s backpack as he made his way down the treacherous trail. Then too, it wasn’t the backpack that was the point; it was the uncertainty, the unknown, the fear of disaster.

Dawn from my study window

I’ve been reading the fantastic book Anticancer. This is really worth your time to read it, no matter who you might be and what your relationship might be to cancer. It’s poignant and lovely and hopeful, in addition to being really well-researched about the best ways you can keep cancer from taking hold in your body. The author, a PhD/MD with brain cancer, offers us all a sense of the gift cancer has to offer to each of us, whether we have it or not. If the numbers stay consistent (and they have been rising), one in four of you reading this will die of cancer. All of us will be touched by it in some way. And all of us can learn from it, to reshape our present and our sense of a future.

I watch me do that now. I caught a glimpse of my face reflected in a window last night as I was bringing chocolate soufflés to Melissa and her family (back from walking the magnificent Milford Track). My first thought—totally reflexively—was to focus on the deepening wrinkles I see first when I notice my reflection. (Why is it that the voice in my head is still self critical after all these years—I’d have divorced a man so critical of me, but my own self critical voice gets free reign.) But almost instantly, so fast it has to be reflexive too (only newer), I had a thought wondering how deep those wrinkles would get—how old would I get, anyway? Suddenly, the wrinkles were totally different, a measurement of the delight of more time on the planet rather than a mark of decline.

Why did I need fear and tumours and surgery to bring me to a place where I would see wrinkles as a sign of maturity and the delights of age? I’m an adult developmentalist for goodness sake! (For a great article about how maybe we’ve been misguided in our thinking about decline and age, try this). How odd the many mirrors—physical and psychic—we catch our reflections inside. Cancer seems to be a powerful reflector.

I am back from Stan now as I write. Stan was delighted with my healing and I had the bonus of spending some extra time with two dear friends in Auckland who picked me up at the airport, took me to the clinic, and brought me back to the airport to fly home. I was not terrified at the clinic, and I had such deep sympathy for those women who were terrified, who sat, ashen faced while waiting for their names to be called. I feel you, sister. I felt like giving these strangers a hug and also felt delighted to be on the other side of that particular mountain. When the receptionist told me there was no fee for my visit I laughed. "That's the first piece of good news I've ever gotten at this clinic!" I said. She smiled ruefully. It is not a good news sort of place, especially for those of us they know by name. I deeply honour those who work in places like that.

moonset

Now I am back at the beach having had dinner with Melissa and Ayla and listened to the excited conversation about the first day of school (which went really well for all). We grown ups had a long conversation about death and dying and living and purpose and richness in life. Another beautiful thing that cancer is bringing—the depth of conversations with friends and even clients about (literally) the meaning of life. Then, after Melissa had bundled Ayla out of the house (tomorrow is a school day), Michael and I sat in our bedroom in the dark and watched the sliver of a new moon turn orange and slip into a silvery sea.  We are all very lucky to be alive.