30 January 2014

Grey, fading to black and white...

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It is a new day. Each day I am stronger and healing. My wounds are itchy at least as much as they are painful now—a sure sign that I’m healing and the bandages need to come off (next appointment is Monday). I have felt elated over the news about the lymph nodes and about the hormone receptivity of the cancer. There has been good news this week from the biopsy and from my healing body. I have been walking along the sea each day, feeling the sun hot on my face (this picture from a walk with Keith yesterday).
I have also consulted with two oncologists today (bless the network and the beautiful people who connected me with these generous oncologists willing to look at my biopsy report and talk or write to me so quickly). And the news seems very clear after all, and not very grey at all: chemo leads to much better outcomes in someone with a tumour more than 2cm. So today I have begun to cancel everything that was left in my diary from 8 weeks post-surgery. I haven’t talked to an NZ based oncologist yet, but that will hopefully happen in the next week or two. And in the meantime, there is just preparing the body and the mind for four months of illness: how does one do that?
I am also sobered by the recurrence rates—even with the chemo and the hormone therapy (both of which I’ll have). When Aidan asked this morning, “Are you sure this isn’t going to shorten your life at all?” I tried to diffuse and crack a joke and then, when he was still asking, I had to say that I wasn’t sure about that at all. Five year survival results are excellent (nearly 100%). Ten year survival rates are less good. Life shortening is a possibility.
Keith noted today that I keep hating the uncertainty, and in nearly every case, the uncertainty resolves into bad news. It made me laugh—you’d think that maybe I’d start to enjoy uncertainty a little more given those conditions! Yesterday a potential client called and asked me if I could give a speech about uncertainty for her group. Ironically, I did know exactly what I’d be doing on the day she wanted me (and I’m booked) but it does seem a little ironic that I’ve just finished a book about living and thriving in uncertainty. I am generally immune to cancer ironies, but that one stands out.
So, it looks like maybe my cancer blog here will carry on longer than I hoped. I was so craving the most boring cancer story ever told: a small lumpectomy with the requisite radiotherapy. Full mastectomy was more plot than I had hoped—chemo is way more plot (and a longer story) than I was hoping for. I wished that my cancer would be a blip in the beginning of this new year; looks like it will instead be a companion for 2014. And it looks like there is more for me to learn here about pain and darkness.
In the taxi to my pre-surgical appointment last week, I thought that the mastectomy was as much as I could ever bear; that if I got the news that I needed chemo too, it would break me. Now I am healing and getting stronger and this news is a crushing blow, but I am not broken. I think this is a wonderful part of being human: that we really are strong enough to face the things that come to us. It is what all the research I have read would suggest: that we anticipate difficulty and can’t imagine bearing up, and yet we do bear up. We are shockingly fragile, but we are also so resilient.
So today, I wish for each of you the security that you are strong enough to take whatever comes, and the joy of not having anything come to test you.

28 January 2014

Good news but missing clarity


Today was the day when clarity would come, when the path before me would become crystal clear. Or perhaps it isn’t that day. I’ve just talked with my surgeon who has had an oral report from the biopsy of everything they took out. And there is good news and some mediocre news (which isn’t a surprise) and quite a lot of confusion left (which is a bummer).

The best news: the cancer has not spread to the lymph nodes. Just typing that sentence brings me great joy.

Other good news: it has stayed classified as a Grade 2 cancer (mid range aggressive on a scale of 1-3). It is ER+ and PR + and HER2-. These are all good makers that mean that there are some ways to treat any possible remaining cancer (with tamoxofin) that starves it of the thing that it eats.

The not so good news. The tumour was bigger than they thought: 35mm. And there was a very large section (80mm), as they thought, of DCIS (which is a pre cancer) threaded through the breast. He says this is a big volume of disease and influences future treatment options.

The confusing bit: the doctor says that because I'm young, and because there was so much cancer, I still might want to have chemo and radiation to safeguard myself from future cancer. I need to decide that in concert with an oncologist. He would lean towards chemo because I'm young and want to have a long and cancer free life ahead of me, but he says my case is very borderline. So there's still not the clarity I was hoping. But oooh, the news about the lymph nodes is wonderful. It means that there’s no more surgery and that I am, right now, cancer free(ish).

And today has had other healing markers too. I saw a local doctor to look at my wounds and see how I’m doing and remove my oh-so-icky drain. The last time that doctor saw me was the day I found the lump, and he was pretty taken aback to see what my January had looked like, but he says I’m healing quickly and well. And it is such a delight to have the drain gone and to be feeling stronger each day. So there are other, unanticipated decisions ahead of me, and to mark those, I’m going to go take a nap. One foot in front of the next…

27 January 2014

New week


Last night I slept for nearly seven hours—the longest in ages. Amazing how that changes my outlook on the world. This healing time peels back to basics—am I sleeping? Am I cold (goosebumps are bad for stitches)? how much pain is there? These are mostly questions I don’t ask in my regular life, or at least questions that don’t seem to shape the whole context of my days. But this is a new moment, and it brings with it these new questions.
I am making helpful discoveries. Keep the pain medication religiously to 6 hour doses—never stretch it out (I take the next dose in 17 minutes and can feel the crescendo that comes before the quieting). Sleep in my comfy (if ugly) Danish recliner rather than in a bed. Melatonin before bed and more blankets and pillows than I think I’ll need. Nap every afternoon. Ask others to get down a plate or a mug from a shelf. Watch and talk while dinner gets made rather than chopping and sautéing. These are new habits, and they are not forming without an effort.
The house and the village have emptied out. All of my associates have gone home now. Carolyn flew out yesterday afternoon. Melissa is on the South Island with her brother. Michael is back at work. My house smells like flowers and sounds like the sea.
My first days home were hard—this place is familiar and yet there are ways I am so unfamiliar. But the present becomes normal more quickly than I would have imagined. I feel like I am blinking into 2014 for the first time, looking around at this year that has been off to a bad beginning. What happens to it now?
I have paused on this sunny, breezy day at the crest of an in-breath. Tomorrow Stan will call and tell me the biopsy results and the future will become more clear than it has been in a month. I crave and dread the answers he provides. He thought there was a 90% chance that I wouldn’t have cancer in the lymph nodes. But there was also a 90% chance I wouldn’t get breast cancer at all.
I can see, over this next rise, the terrain of my next weeks taking form. This week, doctors and drains out and diagnoses. Next week the first day of the new school year (and Aidan begins high school). We become New Zealand citizens. The week after that I teach my first leadership program post surgery. There are plane tickets to buy, programs to plan, slide decks to make.
I can’t remember a time when I could see what I would be doing in three weeks but wondered who I’d be being in three weeks. It is unsettling and sort of interesting for a developmentalist to be asking questions like that, here from my perch on the crest of the neutral zone.

25 January 2014

First day home

I am just up from a nap in the sunshine in my own bedroom, the windows wide open to the sound of the sea and the cool breeze coming off the water. Surely this is an enviable place to heal.

I am trying to lean into the healing place, and I’m wondering why that’s so hard. Some of the hardness is about the pace of it, about feeling breathless with a walk from the bathroom to the living room (in what is a really small house), looking out into a landscape I don’t have the energy to enter into today, struggling to find a book that will sweep me out of the darkness. Some of it is about the pain of it, about finding more parts of me sore than have ever been sore as I step back from the big painkillers to try to just make my way with the drugs that don’t make me feel so sick. Some of it is about the waiting, the wondering for the next few days what the biopsy report will say, the inability to know whether this healing is the last step of this treatment or just the next step on a treatment path that stretches out months in front of me.

And then there’s the thing that I talk with clients about all the time—what it means to return different into a context that is the same. There is a kind of disorientation of having gone away and had some major and transformative experience and then returning to a place where your life just sort of picks up as it was before. Many of our clients deal with this when head off on one of our programs—they have some kind of radical discovery about themselves, find new places they had not anticipated, feel their identities crack open a little as they make new sense to themselves. And that begins with letting go of some story they have had about themselves and who they are and what they’re about. Now I feel that motion in myself, in the actual pricking of wounds, the tightness of healing skin, the gaunt face peering back at me from the mirror.

Surely cancer reshapes the larger system of my life. In this way it is unlike a leadership program where other people expect me to move unchanged back into my old habits. My friends coax me to eat (Carolyn is currently starring in the role of my Jewish mother) and to nap and they take turns being with me so that I’m not alone too much. My firm is rippling around, trying to figure out what my cancer means to my colleagues and clients the first half of this year (and longer?). My parents, in-laws, and extended family are all making sense of their relationships with us (and to a certain extent with each other) in new ways. And Michael and the kids are figuring out what our family looks like when I’m sick. In this way, we all feel far from home.

And in other ways, we feel our delight at being home. Michael and I have walked around the garden (me in my new robe and flip flops), ruing the knee-high grass (weeds?) and admiring the ripe tomatoes. We sat on the bench in the sunshine, listening to the laughter of children from the sea, the thrumming of the wings of a tui in flight, the constant pulse of the waves. In these last 7 years, we’ve planted trees that are now taller than us, moved earth, built walls, scattered wildflower seeds. And while it looks overgrown today and just a little unloved, with some care and time, it’ll look less like a wild mess and more like the somewhat random garden it is: haphazard but beautiful, rough but well-loved.  It’s grounding to remember the ways that change and constancy are both the stuff of life. Lightening strikes and a tree falls and at first the difference is arresting and raw. And then over time a new landscape emerges, new views across the little valley and into the hills, new patterns of the wind through the leaves. I guess I’m like that now, recovering from the lightening, searching for the new patterns. I will sometimes feel sorry for myself and sometimes feel grateful to be alive and sometimes feel all those things at the same time.  This may be what healing looks like in this season, here in this endless January at the beach.

24 January 2014

Some answers--but big questions left unanswered...

I'm home! So the answers: 1) will I be able to make it without the heavy duty painkillers? Yes. 2) Will I be allowed to go home? Yes. 3) What will I think about my body? Weird beyond belief. 4)  (and this was the most important) Will we get the biopsy results? No, alas not until Tuesday.


Go clock!



Yesterday improved markedly with yet another anti nausea medicine (the third or fourth) and visitors. One came totally unexpectedly (she lives in Wellington but needed to be in Auckland for the day) and the other was a friend of a friend who was wonderful to get to know, even in these rather unhappy circumstances. I managed to be awake and alert for them the whole time (as opposed to my poor Wednesday visitors who mostly got the thrilling experience of watching me sleep). Michael and I even took a walk down into the hospital gardens—a very close walk to be honest but with obstacles like hills and stairs and rough path. I did very well then and am doing better still this morning.
The four big questions for today: 1) Will I be able to make it without the heavy duty painkillers that make me feel so sick? They’ve all worn off now and I’m just on Panadol and I am definitely feeling the difference.  So we’ll see how that goes. 2) Will I be allowed to go home? Yesterday Stan said he’d decide today. I am so wanting to go home. 3) What will I think about my body once the tight ace bandages come off today? How grossed out will I be at the cuts that are everywhere? (Remember that he had to do some work on the healthy breast so that they could be a better match, so my whole chest is sore.) 4) And finally: will he have any biopsy results with him when he shows up this morning—and what will they say???
I used to watch American Football sometimes (generally the Super Bowl at a party with friends) and the truth is, I can’t stand it. So while my friends were rooting for one team or the next, I would root for the clock. Ever since we got this cancer diagnosis and knew we were looking down the barrel at the longest and most difficult month of our lives so far, Michael and I have been rooting for the clock. The minutes pass so slowly when you are waiting for news or an appointment or a surgery. I have tried to live my life to never want it to go by quickly; I have always tried not to do the things that I would wish would just hurry up and end. After all, we have an unknown but limited about of time on the planet, and we should savour it as much as we possibly can. But in this time of pain and fear and sadness, I have decided that rooting for the clock is ok. I’ll go back to the world of not wanting time to pass quickly soon enough. But as we sit here in the sunshine in my hospital room, the only thing Michael and I can think is: Go clock!
I’ll be back in touch later in the day with some answers to these questions. I hope I get good ones.

23 January 2014

Forward and back


I can’t tell whether I actually feel worse today or whether I was expecting to feel so much better that the status quo feels miserable. But today is hard. My day nurse, Diane, says it’s typical to go a little backwards on the second day. So I guess I’m being typical again. I quite like being typical, though in this case I’d rather take after my father whose knee replacement recovery made him the literal poster boy for the hospital (I can show you the posters…). I’d like to tell that story.
The story I’m living today is of feeling so itchy under my substantial bandages and not wanting to eat anything at all. The drugs to keep the pain and infection down also make me nauseous, which is not that fun but surely better than pain and infection. So they give me drugs for that too, but still I don’t feel particularly good alas. And we’re all starting to wonder what it’ll be like to fly home tomorrow and also what it will be like to try to recuperate at home when there’s no nurse’s button to ring every time the pain gets a little too much. I guess the idea is that I really am improving slowly but surely and that tomorrow is a whole 24 hours away.
The funny bit today is that as Michael and his friend were talking to each other in my room, I would drift in and out of sleep and weave their stories into my dreams. I kept trying to run or bat things away with my arm and I’d startle myself awake to find them laughing at me. A hospital room is not a barrel of laughs, so you have to take what you can get.
I’ll hope to have a better report for you tomorrow—or even later tonight—as my spirits rise and my food stays down. Love to all.

22 January 2014

Groggy gratitude


Ok, here I am in the hospital, a little groggy still and drugged up. Let’s see if I can write!
Funniest hospital story so far. They took me into the prep/recovery room to set me up with the IV and give me the pre-op meds that make me sleepy. The next thing I knew, I was in the recovery room with eyelids so heavy I thought I could never open them again and a band around my chest that made breathing a little hard. I was knocked out most of the day yesterday, sleeping and sleeping and sleeping. The doctors think it’s because it was my first time under a general. (None of this is the funny part--here it comes).
Dr Keith, my anesthetist, came in to check on me in the room yesterday afternoon. He said, “That was a cool conversation we had in the theater. We all talked about it after the surgery too and we’ve all checked out your book and everything.”
I told him I don’t remember anything out of the prep room and he laughed. “Well, you commented on how well we were acting as a team and pointed to some of the features of that and we all talked about your book.”
I said all this? I tried and tried to remember, but nothing!

He said it was complementary and helpful and they appreciated what I said! How’s that for funny? I was doing team work even though I was almost unconscious! I guess I really do love my job.

I got back into my room, eyelids still heavy, and heard the messages of love and goodwill people have sent. All I can think about is what a charmed life I lead—now hopefully a cancer-free charmed life. But I really could feel you all cheering me on and I think your prayers or songs or dances or meditations really did wonderful work for me.
I am recovering well. They like my progress. I’m in very little pain now—just pretty sore. Last night they gave me medicine that made me super nauseous and then they gave me medicine to take the nausea away! They didn’t have to give me a sleeping pill because even though I slept all day, I slept most of the night as well.
Now is the time for healing. I feel so excited that the cancer is out even though I’m sad about losing a breast. Stan says it’ll all be better than it was and I trust him to get it right. Two more nights in the hospital and then Stan will “unveil” my new breasts and see what I think of them. I wondered whether there would be champagne and canapés but he said no, just the two of us for the unveiling.
So, for those of you who are worried about me, be soothed. I am amazingly cheerful and delighted here in this hospital room. People are being really nice to me. They are medicating my pain well. It’s lovely to hang out with Michael and his friend. I feel grateful to have found the lump and had it removed along with other tissue that was going to threaten my life. I feel grateful that the Cultivating Leadership crowd are meeting and loving each other and eating my cheesecake in my house with my kids. I feel grateful that the sun is out today. I think I might be the luckiest woman in the world.
I hope each of you can take a few minutes and breathe in the gratitude for your situation. We are all so amazingly fortunate. More from me later…

21 January 2014

More news

Jennifer got back to the room a bit after 1pm our time.  She is pretty groggy, but feeling ok.  Meds are a good thing!  As much as anything else, she is so thankful for all of the love and the wishes that have been coming from around the planet, and was cheered by the good report from her surgeon.  The staff here has been so great, too. My guess is that she will have something to report herself later on today.  It's great to see here back here with me!

-- MB

Out of surgery!

Michael here, providing the update I promised Jennifer I would post.

Stan, the surgeon just rang, as he promised he would when he finished the surgery.  He said that the surgery "went really well" and that there were "no unexpected findings."  He said that he was very happy with the margins.  He said the tumor looked just as it did on the MRI, so there were no surprises  there. He explained that all of both radioactive dies went to only one sentinel lymph node (which means she only has one and it means that she only had to have one removed, which seems good to me), so he is very confident that it will be a good indicator.  He said the one lymph node "looked and felt normal," so he is "hoping and expecting the lymph nodes to come out clean." She will be in recovery for the next half hour, returning to the room when she is awake and comfortable, likely groggy for the next two hours.  All in all, things look as good as they can at the moment.  Very thankful that things may look much brighter from here.

All of the wishes we've been getting have meant so much to both of us and have brought me to humble, grateful tears over and over again.

Much love to you all.

Michael


20 January 2014

Surrender


Everything that could be in place is in place now. I have lined up a surgeon we have confidence in, have had the biopsies and the MRIs to help us understand what we’re dealing with, have scheduled the surgery at the earliest possible date. We have left our kids in the care of our dear friends. My partners have the Cultivating Leadership meeting well in hand and are right now moving furniture in the Hall near my house. Keith has driven us to the airport. Rob is driving to Auckland to be with Michael during the surgery. My bag is packed with 3 different sorts of nightwear (because I don’t know what the fashionable mastectomy patient is wearing this season) and a fluffy robe that reminds me of Dolce. There are so many moving pieces to the next week, and my hands are off all of them. There is nothing more to do.
And there’s a way that there is an ease in all that. I don’t think I really have understood what surrender is about until now. I have had moments of it, when the anxiety about missing my connecting plane dropped away because there was nothing I could do about it, when the logistics are as finished as I can get them and now it’s just about moving through. But I’ve never had this feeling about something that has created such anxiety in me. All week I’ve been imagining the pre-op time—the drawing of guide lines on my body, the pick lines, the oxygen tubes—with something that approaches terror. Now I see that same room, the same activity, and I my heart doesn’t race so fast. Now as I picture it I have the sense that these people who do their jobs well will be busily having just another day at the office as they paint on my body, cut and stitch. All I need to do is lie still. Surely I’m up for that task. One breath and then the next breath until finally I’m breathing into a new body, healing what has been silently ailing me for some time.
So I feel quiet on this plane to Auckland. I am on a moving sidewalk that goes through this little tunnel of misery and hopefully takes me to the large and beautiful cancer-free theme park on the other side. The love and support from all of you to all of me drifts about me like a warm blanket in an icy room. As I sit very still and peacefully, I can picture your words and your love weaving around me, helping to boost my courage and deepen my sense of peace. (If you’d form a protective layer around my lymph nodes, that would be special help…)
You’ll hear from us again some time tomorrow when I’m out of surgery healing. Until then, I hope that you breathe each breath more deeply, that you love the people around you a little harder, and that you relish each healthy cell in your body.

19 January 2014

Distractions

Last day at home. It was a day to be busy. Michael washed the cars and the windows and watered the plants.

Keith and I planned a program so that we could get prework out. Teaching the program seems a lifetime away next month. Melissa and I walked the hills one last time before the surgery. And then I reverted to type and baked:
  • pumpkin muffins (for Naomi and Silke)
  • almond cookies (for the Cultivating Leadership snack)
  • chocolate mousse (for Aidan)
  • triple chocolate cheesecake (for the Cultivating Leadership dinner)
  • chocolate chip shortbread (for Naomi)
Tomorrow we go back to Auckland. 4.30 radioactive shot. Dinner with Rob and Naomi and Silke. Then to try to sleep before the 6.30am pre-op call. Soon the tide turns and the hard stuff gets easier (I hope) but not yet...

18 January 2014

Transitions


Today has been a day for sinking in, for walking in the hills with Melissa, talking with people I love about loss and hope and change. I’ve been thinking a lot about William Bridges’ theory of transitions. I’ve been teaching about Bridges for years and have found the theory so helpful for many of the transitions I’ve been through (scroll back many years in this blog and you can see me wrestle with the transitional stages to here).
In short, what Bridges says is this: In regular time, we live in regular narrative order: beginnings, middles, and then endings. In times of transition, we live in a backwards order: endings, then the messy middle, and then the beginning. So right now, at the beginning of this cancer journey, I’m grieving some endings.
I’ve been in mourning much of the day, and I’ve tried to trace the threads of loss to find out what matters most. What is it I lose when I have cancer? My left breast, obviously.  Being home after school on Aidan’s first day of high school. Time with all of my business partners (who are also dear friends) and my whole firm as almost all of Cultivating Leadership meets for three days this week (their opening circle during my surgery). Client engagements I’ve been looking forward to for months. And those are just the are tangibles.  There are others: A sense of myself as young(ish) and indomitable(ish)? A sense of the safety of my own body, that my cells are on my side?
I look forward into the neutral zone—this space of fear and uncertainty and potential for new forms of creativity and unexpected discoveries. That gets made manifest in surgery, when I’m in between it all, and afterwards, when my body is not yet what it will be and yet is obviously not what it used to be. I have thought about the neutral zone in so many ways, but never in the healing of the body, never in skin fusing with skin, angry red fading to cool white, pain easing. It gives a new pulse to an old idea, a new set of metaphors about pain and grief and healing that I have never had before. And it gives me a new kind of hope for this neutral zone of all the icky-ness and fear of a hospital visit for this kind of surgery, a new anchor to the potential of creativity and discovery in this dark passage to whatever is next.
Because I really do know that this cancer journey will bring me to a new beginning, a new emerging from the cutting and healing that these next weeks hold. I know that as I remove this cancer, I am also creating new spaces in myself to hold more love, more compassion, more gratitude for being alive than I have been able to hold before. I got an email today from a friend who said she is “sending clouds of love to wrap around all [my] raw edges.” I will hold that metaphor and imagine the love that swirls around me—here at home with Michael and the kids, on the beach with Melissa, tucked into bed with Dolce (who is the most teddy bear like dog I’ve ever seen), drinking tea with dear friends who come to visit, or reading supportive emails from people all around the world. I have never before lived so much of the full spectrum of human emotions in a day or a week, felt such love and connection as well as such aloneness and terror.
Tomorrow my whole Garvey family gets together to celebrate the new year, to toast my cousin just gone to fly Army helicopters in Afghanistan, to kiss the growing children, to bask in the delight of the love that holds this family together through grief and joy. My news will ripple through the crowd and I will feel the warmth and love all the way across the international date line. Last year we were with them in the chilly US winter. Tomorrow I’ll walk in bleached summer blonde hills with Melissa for the last time for a few weeks. Monday I’ll begin the journey that starts with pain and fear and takes me to a new tomorrow. I might hate this transition, but I expect I will grow grateful for it over time.

17 January 2014

Biopsy results

Ok, verdict is in. Left breast is filled with pre-cancerous cells, woven throughout it.
Full mastectomy on Tuesday morning. Home Friday evening.
We find out about radiation and chemo on around the 29th.

16 January 2014

Waiting game

Today was a nothing-cancerous kind of day. I'm healing from the biopsy and don't know the results yet. Tomorrow is the momentous day when I hear from the doctor about the biopsy and find out what surgery I'll have next Tuesday.
I'll write something before I go to bed tomorrow and we'll see where we're going next. Fingers crossed...

15 January 2014

MRI Part II: The biopsy

 
Wow, today was a wild zooming day. We had a very weepy evening last night. Melissa came over and cried with us and then eventually made us dinner which we all choked down, sometimes crying, nearly always nauseous. It was probably our hardest night of all. Then Michael and I woke up early and cried then. 
There are things to say about what it means to lose a body part, about the horror of reading reconstruction options and people’s stories about them, but I’ll save that for another night. Tonight I’ll just give the action about today.
We flew up to Auckland and went to the clinic. The doctor there tried to see what the MRI had shown so that she could biopsy that (to decide whether the “highly suspicious” tissue was cancer as the MRI report had said). It was hard to find for her and we talked about the ways it could be cancer or could just be “young breasts.” (This was the high point of my day, being told I had “young breasts.”) She could see some pieces that might be suspicious and might be ordinary. She went off to talk with the surgeon about what to do.
Stan (the surgeon) suggested the ultrasound assisted biopsy, but if it came back as not cancer, we would then need to get an MRI assisted biopsy at some point next week. This nearly made me cry in the appointment room: the best (kind of) outcome would be to have a cancerous result because otherwise I’d need to put off the surgery again and have another, more terrible biopsy (the MRI biopsy is worse than the regular one). And then have a full mastectomy. Are we having fun yet?
I asked whether we could skip the regular biopsy and go straight to MRI assisted (which would be conclusive). Could we get an appointment this week? She went off to check. Very few doctors do this tricky procedure, and none in the right clinic on Thursday or Friday. I was despondent. She went off again to check one more thing and ultimately came back triumphant: they could do the MRI assisted biopsy today if we went right over! We raced.
The nurse was amazed we had gotten an appointment with no notice. She said that not only does that never happen, but that this doctor who would be doing the biopsy was the best she’d ever seen. She was not uniformly positive, though. She picked up my wrist to put the line in for the sedative and the contrast. “So you’ve started chemo already?” she said, looking at my scrawny wrists. “No, just diagnosed on Friday,” I said. She looked back at my wrist. “Wow, really?”
“Doesn’t it hurt more if you put it there?” I asked, as she put the thing (what is this called? A pick line?) in my wrist.
“No, no--it’s way more convenient for us this way,” she assured me. (Which wasn’t the question.)
And so on. It felt a little like a comedy of, not errors but of those eastern European nurses who think pain is sort of good for you. And they might be sort of right. Right to the end of the procedure when she applied copious (and painful) amounts of pressure to the wounds and when I noted that it really hurt she said, “I bet.” I knew the whole thing would be funny after all.
The biopsy assisted MRI was actually not so bad at all (note that this is the new “not so bad”). The sedative (“Just think of it as a gin and tonic,” she said) was a delight. I wish I had some right now. It took a long time (2.5 hours) as they tried to find the right place to biopsy. I had a sense, as they wheeled me in and out of the MRI, of a set of engineers searching for oil or coal or gold, core sample after core sample drilled deep. They took 10 samples, and the doctor said he was confident that if there was cancer there, he’d gotten a good sample of it.
Mostly, though, I was just consumed with delight. The impossible hope of an MRI biopsy (which is something I’ve never ever hoped for before) came true within hours of its conception. I’ll have the result on Friday and with it a clean decision about a lumpectomy or a mastectomy. Surgery Tuesday in any case. Some things begin to click into place, and even if they aren’t my very favourite things in the world, at least they get me closer to the other side.
I can feel the love and support coming towards me. I am grateful beyond words.

14 January 2014

MRI results

        Ok, this one isn’t a post written in the fullness of time and with the distance of a day. The MRI results were not good.  But the good news is this: The doctor says this will not make any difference in the prognosis, just the treatment. The MRI of the lymph nodes looks clean, so there’s no greater threat of lymph node involvement than there was before. This cancer should not kill me. This cancer should not kill me. (I have taken to chanting this to myself.) 
But other news was less good. The tumour is larger than we thought (21 vs. 28mm) and there is a large band (8cm) of questionable tissue that they think is also cancer (not invasive cancer, but probably an early form of cancer). If they're right, my breast is filled with this early cancer.  So, instead of a lumpectomy on Thursday, we’ll fly up tomorrow for a biopsy of the questionable tissue (and it’s not even clear that this biopsy will work, so fingers crossed there or else it's another trip, and another biopsy, more waiting).  Results from that biopsy on Friday (if it worked). I’m scheduled for a full mastectomy (and I guess a reconstruction too— those options look very very grim) next Tuesday. A week in the hospital or in Auckland, healing. We are a little more scared and sad than yesterday--lots of tears in our house tonight.  Whatever you’re doing—singing, praying, meditating—it would be great if you could keep doing that, only just a little harder.

Love and MRIs

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One thing that this unexpected cancer diagnosis has brought with it is unanticipated amounts of love. My email is more likely now to signal an expression of love than a work issue, and I am hearing from people all over the world—poems, songs, stories, offers of meals or research or reiki or prayers. I want each of you who have emailed or called to know how unbelievably grateful I am for your support. Each of your expressions of love and sadness and hope and joy is a balm for me. I feel small pieces of you joining with me and making me stronger and more resilient. As the days have passed and I’ve gotten more used to the idea that I have cancer, I think it is the love I feel from all of you that weaves me back together again, that helps me form and reform a new identity that includes the cancer but is not driven by it.
Cancer takes more than just my ability to plan and control my life; it seems to also take over some of my ability to know myself. As I wait for the doctor to call to let me know what surgery will be done and when, I am in some ways a passenger in my own life. I go where the doctors tell me to go, get on planes or not, cancel gigs or not. And I’m just 16 days past the discovery of the lump. This thing gets darker before the dawn. And in the darkness, new insights will come along with the pain and misery, and new connections and new love and delight. Each of you thinking about me is a pinpoint of light. I used to wonder whether the notes or poems I sent to friends in need or sick or mourning were anything more than a flood into already full lives. Now I know. Each sentence is a light in a time when it is sometimes unexpectedly dark. Thank you.
Yesterday morning I had my first breast MRI. For those of you who haven’t ever had that pleasure, I’ll quickly explain. The MRI is a big tube and you get wheeled in on a table and lie there while REALLY LOUD sounds happen around you. I’ve had them for my head several times but never had one for my breasts. For that, you lie on your belly on a kind of plastic frame that holds your body on an upwards incline. Your breasts dangle through openings in that support (sorry that you’ll never get that picture out of your mind). Then you lie like that—on your belly, breasts dangling through these holes, face resting on a soft opening looking straight down, arms resting above your head—for 30-45 minutes as loud noises happen all around you.
I was a little anxious at first (that doesn’t sound like much fun, does it?) but in the tube itself, I realized that this was the best part of the diagnosis and treatment part of the cancer journey. Only one needle (for a contrast that they injected at the end), no pushing or squishing or blood of any kind. And I got to chill out with only the job of lying very very still. More frightening will be the results, which we’ll get today, which will give us a sense of the extent of the cancer and thus of the surgery. Fingers crossed the lump we know about is the only one that’s there.

Here is our favourite sculpture from the garden

Then Michael and I had a big brunch (you can’t eat or drink before the MRI) and took a walk through the Auckland Regional Botanical Gardens which was so beautiful and healing (I've attached a picture of our favourite sculpture, which could stand proudly in your garden for NZ$30,000). And then we came home to Wellington, hopefully just to wash clothes and repack for surgery on Thursday, but knowing that if the MRI news is bad, there will be a bigger surgery, probably some time next week.
It is weird and wonderful being home. I am different now and see the place differently already. Plus it’s different too: No kids (still at camp), no dogs (still at the kennel). But the sea continues its pounding and reminds me of how cycles work, how enduring the world is, how precious each wave is and how brief. We had friends make us dinner, bring it over, and eat with us, and then we watched the movie that always, always makes me laugh (Soapdish). I slept well enough and woke only briefly at 4 and got to watch the orange sliver of the room dip into the sea.
So today, with a blue sky and sea in front and my own garden behind me, I am awash in gratitude—for non-invasive medical technology, for the kindness of doctors who see cancer every day but are still sympathetic about mine, for the sweetness of mint, fresh from the garden. I am afraid of what I might learn this afternoon (I’ll post briefly when I hear) and grateful that breast cancer treatment has come so amazingly far and that they can learn so much with less and less cutting things open. I am honoured that you’re reading these words and grateful that you’re here with me. And every wave, and every breath, seems pretty amazing. Here’s a poem my dad sent this morning, for us all:

Sometimes
Sheenagh Pugh
Sometimes things don't go, after all, 

from bad to worse. Some years, muscadel 

faces down frost; green thrives; the crops don't fail, 

sometimes a man aims high, and all goes well.

A people sometimes will step back from war; 

elect an honest man; decide they care

enough, that they can't leave some stranger poor. 

Some men become what they were born for.

Sometimes our best efforts do not go 

amiss; sometimes we do as we meant to. 

The sun will sometimes melt a field of sorrow 

that seemed hard frozen: may it happen for you.


13 January 2014

Telling the kids

Michael and I were confused about when to tell the kids. They’ve been at camp just about the whole time from lump discovery to diagnosis. And they will be at camp for the next three days. Yesterday was parents’ day. Do we go and not tell them (which felt like it would require some pretty significant lying)? Do we go and tell them (and then leave again)? Do we not go?
Then we did the organizing.  Aidan would come home on Wednesday, flying from Auckland to Wellington. But if we get good news from the MRI today, I would be flying from Wellington to Auckland at that same time for my surgery. This does not seem a winning combination.
And so we told them. We actually roleplayed the conversation some in the drive down (we are consultants after all). We found a sign to a look out just near the turn off to their camp, so we figured we would have a beautiful setting. We had a contingency plan in case they got really upset and wanted to leave camp. We informed the camp parents about my diagnosis and our plan to tell them, and we whisked them all away.
Lest you be picturing my two blonde kids in the car, you’ll have to broaden. Into the back seat we squished not only our two blonde kids, but also our two nearly-kids—Ayla and Silke. They were at camp too, and we couldn’t tell our kids without telling these girls. So we piled them in the car and drove the short distance to the lookout.
Which turned out to be a carpark next to the road. Really. We stopped there and the kids said, “What are we doing?” and I said, “This was supposed to be beautiful.”
“This is not beautiful at all,” they informed me. I said I had noticed that too, but it was too late. I took off my seatbelt and turned around. (Note that in the role play, we had decided that the ideal location was someplace beautiful—not hard to do in NZ—and with a round table that held us all. Note too that you don't always get what you want. First exhibit, cancer.)
“I have something to tell you, and I just want to let you know here while we’re away from people and give you a chance to ask any questions and then we’ll go to lunch,” I told them.
“Did Perry die?” Aidan asked, upset. (Perry is our 10-year-old dog, a cancer survivor himself, who mistakes himself for a puppy.) No.  Perry was fine. No one had died.
“Oh, no, are you pregnant?” Aidan asked. “I am not excited about a little brother or sister.” No. Not pregnant. But it was a health thing, I told them, and I talked about the cancer.
Naomi had a series of questions about health and survivability, about what that meant for her since breast cancer is partially hereditary, about whether I’d wear a wig or what. Aidan high fived me for being about to be a cancer survivor (like Perry and other cool people). Silke asked about whether I would lose my breast. (Both girls were excited at the idea of a breast reconstruction that took tissue and fat from my belly to rebuild my boob—a twofer.) And then, after about five minutes, when they were convinced that the cancer would neither kill me nor inconvenience them too much, the cancer became old news and they started to chatter about camp intrigue. We went to lunch.
Over the course of the next hours, one kid or the other would go quiet for a little while and we’d hold them and love them. Why would we be surprised that this is a roller coaster for them too? Michael and I spent Saturday night’s dinner choking back tears and forcing down food. Sunday night’s dinner we ordered heaps of food and Michael made me laugh so hard I nearly choked. Same cancer, same fears, different moment on the spin cycle.
Today is the MRI, another moment on the spin cycle. One foot in front of the other. I was up much of the night, thinking about the things to be done, wondering when I would get better at quieting my mind, worrying about all of it. I fell back asleep at 5 and then woke at 5.30 from the second of two vivid dreams. In the first, I was trying to teach a workshop but I kept forgetting things and having to go after them (this is a totally standard dream for me) and people I hadn’t seen in years kept walking into the room in tears to give me hugs (this is the unusual part).  The plans kept shifting for the workshop, and the waiters would put down food and then take it away before we could eat it, and they would change all the furniture in rooms as we were trying to use it.
The second dream was worse. I was in a pool with a life jacket on, splashing and playing and having fun in the water. I began to backstroke though the water, loving the feel of the water on my arms and legs. I took full breaths and zoomed fast, fast across the pool.
Then suddenly I realised that I had been swimming underwater this whole time, and taking gulps of water instead of breaths of air. I thought it would be impossible because my life jacket was on, but then I realised that the life jacket was water logged and keeping me down. I tried to stand up, tried to not breathe the water, but it was too hard—I was too heavy and tired and stuck under the surface. I could hear people’s voices through the water. They were yelling and upset and trying to get to me but somehow they couldn’t. Michael’s voice was frantic. I looked up at the sun through the water and knew i would die.
And then i woke up. Hard to interpret that dream, eh? (Ironically, I woke up very thirsty and at 5.50, 20 minutes after I was allowed to eat or drink anything…)
            So, it’s up and down. And my subconscious has gotten involved too. Now for the MRI—the fun never ends.

12 January 2014

The worst summer holiday ever


My friend Keith says, “There is no world irony shortage,” a phrase that has come back to me again and again over the last two weeks. In the week between Christmas and New Years, I used long stretches of unplanned time to really be strategic about the coming year. I wrote about what was most important to me, decided which things to drop and which to carry on with (although of course there were some things I had to do because there was no getting out of them) and walked along our big beach thinking about not letting my life happen to me this year, but instead really crafting it. On the weekend before New Years, as Michael and I took a long walk through the hills near our house, I told him that this was the year that the seeds I had planted over the last many years were bearing fruit. Cultivating Leadership, my leadership development firm, is thriving. We have grown from an idea to a collection of interesting, smart, kind, masterful teachers and coaches and scholars. The Growth Edge Network, a twinkle in my eye for a very long gestation, is flourishing beyond my wildest dreams. Our Gathering in Cambridge this August was one of the high points of my career. My first book is selling well enough for a book of its kind, and my second book (written with Keith) is off with peer reviews. A golden age.. I was near tears with joy for much of that week.
a 600 year kauri tree
In a Greek myth or a movie, something horrible would happen here, I thought. This is tempting the fates. My life has been charmed for a long time, and I’ve kind of been waiting for the other shoe to drop for a while. But I have been giving myself a firm talking to about this. Live in this glorious present. Don’t be checking your blue sky for coming rain—just live with joy in the blue sky and if the rain falls, learn to live with some new kind of joy in the rain. I am a slow learner, but I walked along the beach and practiced this idea.
And then on the eve of New Year’s Eve, I was showering—not checking for anything, not on a hunt or a mission—and I found a lump in my left breast. I had to sit down in the running water and collect myself for just a minute before telling myself women find lumps in their breasts all the time. Still, it was big and hard and distinct. I toweled off and called the doctor.
He was pleased with the feel of the lump. It was firm but mobile whereas cancer usually tethers to things. I would need a mammogram, but not urgently, which was a good thing because the week was impossible with the holiday right inside it and a mammogram would be hard to come by. “It’s the wrong time of year for this sort of thing,” he said apologetically. “But I don’t think this is a big deal—you can wait until next week when things begin to get back to normal.”
I explained that Michael and I were having our first couples holiday for a long time and we would be away. Could we have the mammogram this week anyway? He made a couple of phone calls and made it so—mammogram for Friday afternoon. Holiday with a clear mind was to begin on Sunday.
But our play doesn’t go like that. The mammogram was inconclusive, the ultrasound merely proved that the lump was not a cyst and would need a biopsy. “Do I need to cancel my holiday?” I asked. No, they told me, this isn’t urgent and you probably couldn’t find anyone to see you next week anyway. It’s the wrong time of year for this sort of thing.
Us looking up at the kauri tree with delight
So Michael and I headed off to the beautiful north of NZ, and by the time we made it through the rain to our B&B, we were spinning. He spent Monday on the phone and finally found an open clinic and made an appointment for a biopsy on Wednesday. We celebrated our biopsy appointment with a boat trip to see dolphins on Tuesday, and mourned the doctor’s strong sense that the lump she had biopsied was cancer with a trip to the magnificent Cathedral Cove on Thursday.
(This, by the way, is not a recipe for a winning holiday. The parts of the holiday that we were able to have—before and after the biopsy and before the results—were filled with heart-wrenching beauty. But there is terror before a cancer diagnosis, and thoughts of death and pain and baldness and sickness and wasting away. Makes it a lot harder to enjoy the lovely scenery of the most beautiful country in the world.)
Friday we were back in Auckland for the diagnosis: infiltrating duct carcinoma.  It is a 21mm tumour, an with a provisional aggression grade of 2 (of 3). We won't know what stage it is until after surgery.  My surgeon called this "garden variety" cancer--it's what 70% or more of all breast cancers are. He thinks there is an 85% chance it has not moved to the lymph nodes. There is no sign of lymph activity via feel or ultrasound.
Cathedral Cove
We left the doctor’s office both horrified (I have breast cancer!) and also somehow elated (this doesn’t look deadly!). And since walking out that door, with my admissions papers all filled out and my hospital stay pre-paid, we have had the most extraordinary stew of emotions. I wouldn’t have known my emotions could move around so fast around the same topic, or that one topic could so swiftly and decisively take over my life.
Trying on bras (which I hate anyway, and which you have to wear 24/7 for weeks after the surgery) made me weep in the Lulu Lemon dressing room. Telling my kids left me surprisingly dry eyed. Michael will go out to run and errand and come back and find me busily working away (cancelling things and informing people) or he’ll run downstairs to ask a question and find me in a puddle of tears. Even in these last endless 14 days, I have found a deeper connection with Michael, a richer gratitude to my friends and family all over the world, and a love of life that makes me want to sing and weep and dance.
I offer this blog to all of you who want to follow this journey, which I hope will be relatively brief in the cancer scale. Today I told the kids. Tomorrow I have an MRI to see the extent of the cancer in the breast. If it’s just a single tumor, I have a lumpectomy on Thursday up in Auckland at a breast clinic. If there’s more cancer than that, the surgery will be bigger and will happen the week of the 20th.
Keith and I have just finished a book that’s about dealing with things that are not what you expected and how to keep nimble and awake enough to do that well. And here I am, living the unexpected and trying to be nimble and awake. I guess we’ll all see how I do.

preparing for a new reality

This is just a test to see whether I still remember to do this thing. More tonight...