Look good, feel better

Day 68. Round 4 day 5

Today I woke into the freezing cold morning to attempt for the third time an event called “Look good, feel better,” a workshop for women with cancer that apparently takes place all over the world. The first time it was scheduled was on the day of Nicki’s funeral. The second time I was supposed to go I was so sick (from the belly shot) that I nearly went to the hospital instead. Today, was a day 5 that was blissfully belly shot free (because I don’t need to get my levels up so fast, and because the side effects of that shot keep getting worse, they let me skip it this time). So I tried again. Melissa picked me up, we drove to town and picked up Naomi, and the three of us wandered shivering into the hall decked out for our arrival.

My very first impulse was to leave. I was one of the youngest women in the room, and geeze we looked like a sick and unhappy bunch. I’m not that good in a room filled with strangers in the first place. On a day 5, in a room filled with strangers with cancer, I was frozen (and not just because of the southerly chill). What is the small talk you make at an event where the unifying theme is a potentially deadly disease? “What are you in for?” “What’s your prognosis?” “What did you do before chemo?” Melissa and I made faces at each other while we drank weak tea out of styrofoam cups and ate packaged cookies on card tables. I have never been in a room with so many bald women. Of course, I’ve never been so bald myself…

After an eternity, we were released from our chatting stations and asked to sit at the big U of tables. We found our names and the make up that had been chosen for us from a form we filled out when we were probably all feeling a little less battered.  Naomi and Melissa pulled up chairs behind me, Melissa making more faces at me and Naomi encouraging me to be more serious. Leigh, the woman who was so kind to me when I got my wigs in the first place, took centre stage with Cheryl, a gracious bald woman in the chair in front of her as model.

Leigh taught us how to take off our eye make up gently so as not to lose more eyelashes than we needed to. She taught us the benefits of toner. She cracked jokes about being old and wrinkly. The volunteers—one for each two of us in the chairs—gave us facial massages with creamy moisturizer as Leigh walked us through a relaxation exercise. In between, I talked with the women on either side of me. Bella was in for breast cancer. Stage 3. But several years earlier she had been treated for lymphoma--“So really I’m just lucky to be here every day.” She told me, “I feel great today! I figure as long as you keep a positive attitude, you’re not really sick.” I never heard her say anything that wasn’t cheerful and kind in the two hours we sat next to each other. Her hair was gone and she had painful red patches on her arm about which she and Leigh mused cheerfully.

Leigh taught us how to draw in fake eyebrows: “You’ll have no power in a room unless you have eyebrows. I’ve seen it happen—people’s eyes will just slip right up over your head and you’ll lose them!” and how to put on eyeliner to make up for missing eyelashes. She teased about the eyeshadow palates of the 80s. Rebecca on the other side of me had been at the workshop before a couple of years ago because she’s been in treatment for four years. Brain, pancreatic, ovarian cancer. “I don’t know anything about breast cancer,” she told me earnestly. “It must be so hard.” She told me that the most important part was to stay cheerful in the face of the cancer. “It’s hard, but more days are good than bad. It’s just so important to be grateful for what you have.”

Kathryn, my volunteer, put emerald green eyeshadow on my eyes and she and Naomi consulted about the colour and shading. Leigh asked Naomi why it was so important to spin mascara in and out of the tube and beamed at her when she got the right answer. Kathryn said, “When you put your hair on, this look will all come together.” I’d never heard that sentence before.

Leigh taught us how to put on our blush, and she explained why we needed to use lip liner. Cheryl at the front was glowing by now, bald and resplendent in her work suit and lipstick. Leigh taught us how to use hats to add girth and colour and how to always connect our heads to our shoulders so that it didn’t look like we just had a basketball floating over our shoulders. By now the laughter was easy and the chatter rippled around the room. When Leigh pulled a blonde wig on Cheryl’s head, we all gasped and began to clap. Leigh urged us to look around at the glowing faces of the well-made up women around the room.

We were beautiful. We were relaxed and chatting. We had pulled on our wigs or turbans. We were friendly with our neighbours. We looked healthy.

I do not tend to care about make up. I don’t know which way to stroke moisturizer on (always upward and out—“Do whatever you can to combat gravity.”). If I hadn’t been so fond of Leigh and her ebullient spirit, I would never ever have attended a day like today. But oh, the transformation in our spirits over the course of those two hours. The shift from a room full of sick women to a room full of cheerful healthy (looking) faces. I would not have believed it if I hadn’t seen it happen, hadn’t felt it to me. Leigh told us to walk out into wind with our heads held high. To not have to answer another glum, “And how are you?” because we all look so good.

And the truth is, it was an honour to be in a room with these 30 sick women, balding and pale and glassy eyed, and to admire their spirits and optimism in the face of such difficulty. What a helpful reminder that even when we are faced with significant trials, even when we are coping with life and death issues, when the Big Questions are the ones that are unanswered, unanswerable, there are other, small, beautiful pleasures. Sometimes it is not solving the biggest problems, not about curing it all, that counts.  Sometimes it’s just spending time with your daughter and your best friend, putting on something pretty, connecting with someone whose spirit shines more than the bronzers. Tiny moments of sparkling delight, even in a basecoat of sadness, still create the contours of a joyful life.

At the end, after we had our wigs and our lipstick just right, they drew raffle tickets, and I won. I’ve never won a raffle in my whole life. And there, with women with stage three and four cancer flanking me and offering their hearty (and heartfelt) congratulations, I really did feel like the luckiest woman in the whole world.

Last chemo

(i hope i hope i hope i hope i hope i hope i hope i hope i hope i hope i hope i hope i hope)

Now, wish me luck as the yew juice does its thing...

Last chemo eve

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Day 63. It is day 21 of the chemo cycle, the best and worst of days. Day 21 has the fewest side effects because it is the farthest away from the last treatment. And it is the closest to the next treatment, so prechemo meds begin.

Tomorrow is day 1, the worst and best of days. And tomorrow might be the most significant of the bests and the worsts. This round will be the hardest, these side effects the worst of all of them. And with the near geometric progression in misery from round 2 to 3, I am peering down the barrel of round 4 with more trepidation than ever.

And this round is the last. There is a way I am giddy with excitement to take my last Sunday night steroids, to get to the hospital, to get my IV. Bring on the dawn!  I welcome the sensations I know are coming, the good and the bad: the gentle warmth of the wheat pack to warm my hand, the lingering discomfort of the needle, the kindness of the cancer centre volunteers who bring me cups of weak tea, the burning of the antihistamine, the woozy sleepy contentment that washes through my veins, and the final blissful detachment from the IV at the end. The very end.

I know the present is always a swirl of  bitter and sweet, as each delightful or horrible experience is temporary and will swing in a different direction before too long. The temporary nature of the moment is one of the great intensifiers of pleasure and one of the great relievers of pain. “I will lose this bliss I feel” gets held in place alongside “this anguish will fade.” They are good company for each other.

So often, though the experience ahead of me appears less mixed. It is a thing I know to look forward to or a thing I know I am anxious about; somehow for me future events seem less hydrogenated. In the present, I know those events will be all swirled through with bitter and sweet, but the future looks somehow cleaner from a distance, its lines less blurred by proximity. (Perhaps this is why there is research about how a holiday increases your happiness more in the planning stage than in the experiencing of it.)

 

I am generally a bulldog watching myself fiercely if I am anticipating a dreadful thing in the future. I growl menacingly at me for any moments in my life I am aching to get over. I have a guideline that says I have made a bad set of choices if I can’t wait for this busy period, this stressful speech, this windy season to be over. I watch my propensity to want to rush through the next hard thing and then lounge in the sun. This hard thing I’m rushing through--this is my life I’m talking about. All I ever really have are the days that unfold before me; wishing for this period or that to be over is wishing my life away. I have tried to take these wishes as clues to the kind of life I want to lead. Wishing I was done with teaching a certain thing? I should either try to find the moments of joy in that teaching, or I should stop teaching it.

For chemo I have made an exception to that rule. I’m allowed to wish the days away, allowed to want the miseries of the first week to rush by in a forgettable blur. These are my investment days, the days given over in the hopes that I’ll get more days back from them. They are the sacrifice I put on the altar of my future. Too many of us put too many days on that altar. I have worked hard to stop doing that. But chemotherapy is an offering that demands its sacrifices: the time, the security, the health, the vibrancy, the hair (and now, oh sadly, the nails which are loosening their attachment too).

 

And so this is the last of the weeks I am wishing would soar quickly by on the gale force winds of this blustery dawn. I have never felt such giddy joy at the anticipation of a miserable thing. I am excited for the IV, excited for the belly shot, excited for the bone pain. Hello and goodbye to each of you. Let this final dose of yew juice do its job so that I don’t have to make this sacrifice on this altar again. And now is the time when the weaving through of all of you who have been so lovely and loving to me over the past months all comes together in a blanket I can wrap around me in this last part of this storm system. I can hear your voices on the wind.

Yesterday a gale blew through (of course, because we had a friend arrive from far away). It shook the house and pounded the windows and made the phlebotomist jump (not good) when the rain rattled sharply against the roof of the clinic. Wendy and I walked in the hills in the rain, yelling at each to be heard at all. Today, the wind blows still but the dawn is rosy and there are patches of blue sky. Life is like that. That much I can see coming.

Booked

So this round of chemo was the hardest by a lot. And even here in week three, the side effects are pretty significant. But let us not dwell on that, nor, on this, T-4 days until my next (and LAST) chemo treatment (which is sure to be a house of horrors as each round gets worse than the last…). Instead, let us draw our attention to this:

KEITH AND I SENT OUR FINAL DRAFT TO THE PUBLISHER THIS WEEK.

Sorry for yelling. But 2014 has not been my friend so far, and there has been little to celebrate. And this is a great cause for celebration.

Keith and I had hoped to have the manuscript in early (a couple of weeks ago) but the chemo knocked me out too much for that. Then we hoped it would be on time. But, er, the third round, as I may have mentioned, was not so good, and one of the side effects has been an eye thing that means I don’t see well and can’t really read, which makes editing a whole book a little tricky. But we did it, and while the printer was spitting out sheets at 9.30 at night, Keith and I were nearly giddy with delight. We started talking about this book in 2005 and fleshed it out in 2006 and have been working to hone the ideas ever since. So the fact that we mailed the 96,933 words and nearly manuscript 300 pages off to the publisher is a massive accomplishment. I just wanted to share that with you.

Our book: Simple Habits for Complex Times: Powerful Practices for Leaders.

It’ll be out in early 2015 from Stanford Business Books.

We are VERY excited. But I may have mentioned that…

Pictures today: Me working late into the night on the final draft. Keith and me holding the finished manuscript. The flowers Michael brought me to celebrate!

ps on itching

Steroids are my new favourite thing. A dose last night and a dose this morning and I am slowly watching the rash and the itch fade away. Thank you to all who wrote with love and suggestions about the itching (and yes, I did the oatmeal bath and the meditation and the homeopathic pills and the antihistamines and the camphor oil). But the big guns seem to be doing the best job. Not being itchy is one of the most wonderful ways I've ever felt. Celebrate every second you're not itchy today!

Itching to be done

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Ok people listen up! I know what you’ve been secretly thinking all these weeks: Sure, Jennifer talks about the disadvantages of chemo, but I think it sounds pretty good. Look at her dewy skin, made young again by the chemical peel that is being paid for by taxpayer dollars! Look at the way she gets to start again with a whole fresh look for her hairstyle, and in the meantime gets these two totally different hairstyles (three, if you count the bald look she wears most often)! Look at the easy weight loss plan she has adopted and the way the pounds keep melting off!

Well, it’s not real fun and games until someone gets a full body rash. (If this isn't a saying where you're from, it should be.) The new and improved Round Three side effects are enough to make your (but alas not my) hair curl.

Late last week I discovered that the eye sensitivity of Round Two (a minor dry eye problem, hardly even worth talking about) could be trumped by extra strength Round Three eye sensitivity that kicked me into migraines whenever I saw light or looked at a computer screen. Now THIS was a side effect with flair, one worth staying in bed for. After a couple of days of migraines, I discovered the little look I like to think of as Chemo Retro Gangsta Mom: Me in a beanie with my sunglasses, humming “I wear my sunglasses at night…” (come on, all join in!).

But even that might not have been enough to dissuade those of you who still look on with some envy at my chemo benefits (Migraines are annoying yes, I can hear you argue, but when is the last time you shaved your silky smooth legs? And all the money you save on hair products!). Let this new one be a warning to you. Yesterday I began to break out in the most astonishingly itchy rash. Today it looks like I was in the horror movie Mutant Mosquitoes at the Nudist Colony. It turns out, I’m having a secondary reaction to the yew juice. Remember the reaction I had in the hospital when my chest started to close up in protest for the poison? Well, my skin is now on the protest march too. Turns out this chemo thing isn’t all fun and games.

So, kids, don't try this at home. For all the upside, ultimately chemo is just too itchy to be worth its many beauty benefits. Of course, if it keeps the cancer away, what’s a little pustule between friends…

PS I was guessing you didn't want a visual representation of the topic today, so I picked one that makes me laugh: the wild turkeys on R and D's farm. Somehow their frantic running reminds me of me and my frantic attempts not to itch.

Variability

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Day 47 (round 3, day 5). 

Ghostly Kapiti

How much are you aware of the variation of your mood, your health, your energy? For all of us, sickness and health move in unexpected waves, and I know that at least for me the clouds have always come and gone. These days, the rhythmic chemo cycles get amplified by things like visitors coming and going, conversations with friends and clients, and even the weather, which sometimes make the highs more wonderful and sometimes make the lows more punishing. These mood and health shifts of mine do not tend to have the subtlety of my everyday life, the minor shifts in wind and temperature that require sensitivity and careful listening. Rather, these roar in with a gale, and blow out again leaving cobalt blue skies. And if you are visiting over the span of say weeks three to one, you get to watch a kind of devolution in my resilience and my capacity to do just about everything—from walk to smile to laugh. Dad and Jamie, alas, had such a visit.

Wigging out at my keynote

Sometimes it's most beautiful in the mist

Week three—last week—is generally forecast with sunny and clear moments. Dad came and saw me speak at my first keynote since the diagnosis and surgery (with my first big appearance in a wig—does that make it a big wig?). Naomi, Michael, Dad and I climbed up up up the escarpment. Melissa and I walked kilometers in the hills. On Saturday morning, we got Jamie from a foggy morning and whisked her the next day to Kapiti, where we listened to birdsong in the rain.  On that, the last day before Round 3, I felt like I could almost fly to the top of the lookout to eat the bounty of cheese and fruit and baba ganoush.  

 

And then the chemo begins, and the new battle starts in my body. I am a mere bystander to the cancer wars that happen inside me. My healthy strong body becomes feeble, my resilient mood becomes brittle, and my good health fades into fog. The steroids make me hard for even me to be around; the belly shot sends me just a little farther into the mists. For the first days of the week I just head into decline. Yesterday was always going to be a fairly miserable affair because Dad and Jamie were leaving and the belly shot would be in full bloom. Even inside the predictable misery, though, I didn’t count on the migraine nor on the fever that would rise beyond the “go to the hospital” point (though after Michael packed my bag and the kids were dressed and ready, the nurse told me not to go to the hospital after all).

At the top of the world

It is surreal living in a system that in some ways is so predictable and in other ways seems so chaotic. I can tell you when I’ll be most aching, most exhausted, most weepy. But I can’t tell you which sentence will send me over the edge, which conversations I’ll be strong enough to have, which days of this first week I can power through a piece of writing and which I can hardly get out of bed.

The next three days are forecast to be the most painful as the bone marrow turns over (but not the most emotionally exhausting now that the steroids are behind me). Then come the danger days when a fever lower than yesterday’s will send me to the emergency room. And then the third week when I feel so much better I can almost fly. And then one more spin around this block and, if this chemo has done its job, never again.

Because it is an uncanny match for the day at hand, here is today's poem from the poetry box from Mark. I hope that in the darkest days, I am not only killing the cancer but also growing something unknown and wonderful. I have no idea when the harvest might be, but “If the drink is bitter, turn yourself into wine.”

Let this darkness be a bell tower

Quiet friend who has come so far,
feel how your breathing makes more space around you.
Let this darkness be a bell tower
and you the bell. As you ring,
what batters you becomes your strength.
Move back and forth into the change.
What is it like, such intensity of pain?
If the drink is bitter, turn yourself to wine.
In this uncontainable night,
be the mystery at the crossroads of your senses,
the meaning discovered there.
And if the world has ceased to hear you,
say to the silent earth: I flow.
To the rushing water, speak: I am.
Sonnets to Orpheus II, 29
Rainer Maria Rilke

Hope and despair

Dawn out my study window, breaking as I wrote this

Day 40.

A couple of months ago I was in a workshop where participants had individual conversations with coaches and came in with their insights from those conversations. One person, who had been brooding and frustrated, came in with lightness and a smile—much happier than he had been. We asked why. “I have given up on hope for the future,” he told us, beaming. “Now I don’t have to fight so hard against the impossible odds.” I have been mulling his delight ever since.

Then, a couple of weeks ago I had three conversations about hope on the same day with three different friends. One talked about the joys of hope, the ways it was hope in her life that was transforming it out of darkness, into light. One talked about the horrors of hope, the way hope of a particular outcome pulled her out of her ability to live in the present and focused her too much on scrabbling for a thing she desired next. The third friend and I wandered over the whole terrain of it, confused.

Dad and me, in Pukerua Bay

Today I have woken up scattered, my thoughts in a tangle. Three days until round 3. Today is my last non-medical day. Tomorrow I get my blood taken to measure how much I’ve bounced back from the last onslaught. Sunday I begin my pre-meds. Monday morning I’m back at the hospital for the initial pains of the experience—the setting of the IV, the odd feeling of the anti-reaction drugs burning the inside of my veins as they go in, the chemo drugs themselves freezing cold up through my arms.  And then, slower on round one and so fast on round two, the side effects begin. Tuesday, just as I adjust a little to the various chemo side effects, the belly shot comes that knocks me out for a few days. The black mood from inside the swirl of it all that freezes all my resilience and turns me brittle and thin, the icy cracking skimcoat of a puddle after the first frost. I get lost in despair. Next week doesn’t look that good from here.

 

And then I'll heal. Then there is a rise from the darkness. The ice melts and the brittle reactions recede. The flu symptoms pass. The energy returns and I feel stronger and stronger. And that brings me to 23 May, the next day like today, counting down to the next round of chemo. Which, because I am a lucky woman and have only stage 2 cancer, is my last.

“Hope is the thing with feathers,” Emily Dickinson so famously wrote, Dickinson who so rarely left her house and knew so little and so much about the world. I hear that line again and again as I face this coming dark week, hear the joy in the participant who let go of the thing with feathers, the alternating descant of my friends who craved and pushed hope away. If hope has feathers, does despair have scales? Are they the closest companions like their cousins joy and sorrow as Kahlil Gibran says, “Joy and sorrow are inseparable. . . together they come and when one sits alone with you . . remember that the other is asleep upon your bed.”

Kapiti island in the distance

I write a lot about giving up our desire to know and control the unknowable and uncontrollable future. I watch my mind cycle through and around these ideas. The pain that we know will come from current joy is not often enough to stop us from pursuing the joy—we have children and fall in love and ski with bad knees and give ourselves over to experiences we know will eventually break our bodies and our hearts. Similarly but much less pleasurably, the despair we can feel in a moment obliterates the joy that probably lurks around the next corner and we can begin to imagine that this moment overtakes it all. I remember feeling that way just about three weeks ago. I’m watching it come towards me now.

Dad and Michael, Pukerua Bay

Yesterday Dad and Michael and I went for a walk in Pukerua Bay, the next village down the coast. We  clambered over massive rocks and searched for starfish in mirror-still tide pools. We felt the sun hot on our faces and the wind cold at our back. The day was a jewel, and, unlike a jewel, dissolves. All our days dissolve. All our hopes and despairs and our bodies and our hearts.  Would we love our children so fiercely if we didn’t know that they would grow up and move away from us? Would we hold each other so tightly if we didn’t imagine that someday this would end, that time or cancer or circumstance would pull us away from each other? Would we feel so grateful for a glitteringly sunny day if we didn’t know that the clouds will gather and the rain will beat against the windows? I would like to hold the hope and despair close to me this week, and try not to let either of them sleep too deeply on the bed.