A Thousand Not-Yets

When you’ve been blinded by the sun,
when three months of struggle have turned into eighteen,
one drug to second, to a third, to a fourth
and your monsters have not yet been defeated,
when your bones sprout blender knives that turn themselves on at will,

when spring rains never came, but fires did
and the earth is now not only parched,
but scorched,
when your skin has become equally parched and scorched
when your dear friend, too, has been blinded by the sun,
screamed a thousand not-yets,
and now lies awaiting her passage
What then?

You are wowed by the brilliancy and strength of those called to sit vigil.
You talk to friends who make you smile,
perhaps indulge in an afternoon G & T,
sleep when you hadn’t planned to
lie awake while others sleep.
You cry,
and hold each other close.
You wait.

For rain,
for thicker skin,
for joy,
for summer.

Rocky Terrain and Chemo-brain

I woke too early today, too much on my mind, envious of my sleeping husband. I read an article on the health and cancer-treatment benefits of intermittent fasting, thought about it for a little while, and found myself responding contrarily. When isn’t intermittent fasting an unavoidable, built-in, and unpleasant feature of cancer treatment? Besides, endorphins and pleasure, essential to healing, can be hard to come by when you’re in cancer treatment, and food has always been a reliable stand-by for me on that front, so I doubt I’ll be voluntarily restricting intake anytime soon.

So I make myself a piece of toast with butter and soft mild Gouda, and feel a little less contrary. But you’ll forgive me if this post is all over the place? Attribute it to the rocky terrain I’m on, or chemo-brain? To chipping a tooth yesterday, on a piece of toast of all things? To noticing I’m losing my very, very short hair yet again?

It’s Day Four of this round, going better than last, and the one before. Fresh morning air is coming in through the open door. I feel a moment of gratitude. One can be contrary and thankful in the same breath, right?

I got out on a bike ride on the weekend, and out to eat, and to the Heritage Amphitheatre at Hawrelak Park for the Father John Misty show, thanks to my sister for the last minute nudge. Got a very warm welcome from friends, another endorphin rush. I felt good, very, very pleasantly surprised, almost normal.

I’m not normal anymore though, and I never really forget. Even when I think I have, even when I’m having a great week.

I really did have the loveliest birthday week. Family and friends were beyond generous and kind. I even had all three kids here with me, including the far-away California one, which was a lovely, lovely birthday gift. But here’s the thing—treatment is difficult even when it’s going as well as it is for me this time around. And what happened back in February—when treatment definitely did not go well—has lodged itself in deeply in some part of my brain, from where it occasionally rears its roaring head, as it did the day before my most recent chemo last week.

I’d calmly headed out for my usual pre-treatment blood work and consultation at the Cross Cancer Institute, seeing no clouds of any sort on the horizon. This is routine and straightforward. But what should have been a brief and uneventful visit stretched to three hours, and submerged memory, like an angry volcano, had time to erupt.

The lab took five minutes. A consultation with a new resident took six. The consultation with my oncologist took another six. Ninety-five percent of my morning was spent waiting, seeing so many sick people come and go. This, if you need help imagining the problem, is a lot of time to absorb the treatment fatigue in the air, the oceans of grief and fear in worn-out bodies and fear-filled faces waiting with me, waiting, waiting.

I’m finally finished, leave, and see immediately that I planned poorly. I need to talk to someone, vent a little tension, but it’s a workday, and nobody is available on short notice. One dear friend is enduring her own Cross Misery at this moment. Nothing is wrong, but everything is. I can feel the surge of a powerful wave of regret and need. Today may well have been my last chance for a couple weeks to milk feeling well, to eat out, to have fun, and it’s quickly slipping away. And I need to put into words all the hope, courage, fear, grief, denial—and in some cases, relief and joy—carried in the halls of the Cross.

No problem, I tell myself, I’m an adult. I’m hungry, I’ll lunch alone and run some errands, and talk later. I do this, but did not anticipate lunch would feed the powerful wave of emotion that had hit me. It did. The house was empty when I returned, and when my husband eventually did get home from his meeting, I no longer trusted myself to talk much. I filled in the broad strokes, but they were slate gray and brown and not terribly pretty.

I get on my new birthday bike, which has been the best gift ever. I won’t go hard, I promise my sore muscles. But I do go hard, and further than I planned. On the way home I stop at the grocery store and fill my pack. I think I have my bearings. I get home and remember—chemo tomorrow. And the wave crests. The limbic part of my brain now fully trumps the logical. I wanted today to be a party. I want not to be on the sidelines most of the time when others get to enjoy wine and a bounce in their step and easy untroubled nights. I’m teary and angry and self-pitying.

My husband was patient, and alongside my fear and anger, I felt much empathy for his listening ears. And in the night, his arm around me, I know that though my experience is mine alone, I’m not at all alone.

I finally step back a little from the ambush and see a bigger picture again. It’s been a lovely, lovely ten days, no chemo, so many moments of joy. At my mom’s sunny dining table, I’d eaten my first big plate of food in five days, and it was so good. I left with a satisfied tummy and a giant bag filled with leftover goulash and mashed potatoes, mashed yams, homemade apple sauce, bread, broth, oatmeal cookies and honey cheesecake (for my bones, I tell myself). Have I mentioned that my mother is 80?

A wide river of birthday pleasures is where I was camped for ten days. We ordered in giant platters of amazing Greek food on my daughter’s birthday. And on a perfect, velvety summer evening the night before my own birthday, in the backyard of some very gracious friends, we all ate mountains of divine BBQ’d chicken and couscous, and the most decadent chocolate caramel cheesecake ever. I was high on love and a giant glass of Sangria, last week’s chemo finally taking a proper back seat to my life. On Sunday we enjoyed another made-to-order evening in my sister’s backyard, complete with yet another luscious homemade cake—this one a creamy nutty layer one that is my mom’s signature cake. Birthday kindnesses and lovely, lovely words—words like drops of sweet cream—kept falling on me. A yellow rose and a box of chocolates, a cream-coloured rose from a roommate from 40 years ago, a giant bouquet of chrysanthemums. I felt ridiculously spoiled.

Then I say a bittersweet good-bye to my son, and with it comes an acute awareness that my children have quietly slipped by me in the passing lane. They are smarter, stronger, braver, more honest, and more talented and accomplished than I will ever be. This brings me great pleasure.

I wake early on the day of my treatment. I take care of appointment scheduling puzzles and housekeeping details and pay some bills, and I steel myself. I’m greeted by yet another nurse, who hooks up a juicy deep vein, and, after grimacing for a second, I smile and thank her, and settle in to watch and wait: A slow, clear, silently toxic drip that will beat up my cancer. I focus my mind. Allow the drug to do its work, exhale unwanted effects, and resolve to tolerate what I must with grace.

We finish, and pay today’s slightly smaller but sill giant parking fee. (Do they really have to charge cancer patients these rates?) We leave the dark parking lot and drive into skies turned very dark over the last hour. Hard, hard rain and hail fall, and then, just as suddenly, the sky is blue again, the air fresh. At home, on the balcony, the sun on my legs is warm and soothing. I fall asleep instantly. I sleep again after a little supper, and then most of the night.

Jacqui

Jacqui, dear Jacqui, I’ve been thinking about you all week, and I know others much closer to you have thought of you every minute of every day. We all miss you so much, and wished you could have been there last weekend at the church where we gathered and wept waterfalls of tears into tissues and baby blankets and onto our dresses and shirts.

Many of those gathered to say good-bye got up to talk about you, about how magnetic your laugh was, how quick your humour, how you lit up the room. They reminded us that just as you loved intensely, you felt many things intensely, not just the positive. They talked about the wisdom you embodied, wisdom that went beyond your years.

I felt honoured to be there with those who called you daughter, sister, cousin, niece, friend. I felt thankful for the conversations we’d had in recent months, conversations that mostly revolved around mutually understood pain, uncertainty, heartbreak, medication side effects, cancer, and sometimes crayons and colouring books. 

When I confessed to you that I often referred to you simply as my niece rather than explaining to everyone I was actually a step-aunt, and asked if you minded, you energetically told me that of course you didn’t, silly me! So kind, always, that was you.

My heart broke on Saturday for those who held you in your first hours here on earth and resolved to protect you from this world, and who heart-brokenly admitted there is sometimes little protection to offer. My heart broke for everyone who loved you in a million ways, and managed, through their choking tears, to tell the rest of us more about you, about the many ways you inspired and enriched them.

Before you left, you told us, clearly and eloquently in that well-read blog post, that life isn’t too short, that our lives are exactly as long as they should be. You told one of your friends that you’d enjoyed more joy and love than many who live to be 90, and how could that be something to complain about? I want to live with that kind of gratitude.

Still my heart broke simply for the seeming senselessness of a life snuffed out at 28 years. The faces of my now-grown babies came into sharp focus, and I privately allowed myself honesty: I know that believing our lives aren’t too short is essential to making peace with our imminent death, but today I can’t fathom how any of us will ever feel that your life wasn’t too short.

How well you prepared those closest to you for this day though. How beautifully they talked about it. I’m positive you listened in, and that you were happy with the humour that came through the grief. I’m positive you enjoyed us walking through your favourite park the next day, stopping at all your favourite spots to say good-bye and let you go once again, into the sky, back to the earth, to a time and place outside of this one. I’m positive you enjoyed us eating those ice-cream cones you’d so brilliantly and generously thought ahead to buy for us because you wanted us to end our getting together this weekend with pleasure too, not only tears.

I left resolving anew to live as fully as you did, to honour body and soul, to embrace rest as well as productivity, pain as well as sorrow. I want to milk life, and by that I don’t mean I have a bucket list or that I need to travel or that every day is a party. By that I mean I want to live with gratitude, whether I’m energized or tired, happy or sad, whether I’m reading or streaming TV, doodling or cooking or cleaning, whether I’m alone or enjoying family and friends. Whether my husband is next to me or not, whether my beautiful children’s faces or voices are nearby or not. Whether I’m laughing or my heart is breaking.

Still, I felt grumpy yesterday, really grumpy, and felt shame around it, because it was trivial grumpiness: traffic, and medications, and sore muscles, and neuropathy, and other components of everyday life. I felt my irritability was a failure of my resolve to live with gratitude.

But this morning I see it more clearly again: gratitude and irritability aren’t mutually exclusive. Life is irritating and terrifying and heartbreaking as often as it is lovely, and often at the same time. And underneath the irritation, I found intense feelings around life and death, around my dear friend’s current pain, and my daughter’s, and around the uncertainty with my own cancer. And I remembered that though we often feel alone with our pain, we’re not, not really. It’s universal.

You dear Jacqui, showed us all this beautifully. And this, young as you were when you left us, makes you our teacher, our guru. Your life reminded us that life is a messy and wonderful gift, and though I’ve often said these words, I plan to know this ever more deeply.

Some Things that Matter to me on this Good Friday Morning

This is for me, but also for a few others in my sightline right now—wonderful and courageous human beings whose little spot of earth they travel has buckled or narrowed or just shifted dramatically beneath their feet.

A story matters to me—a good one. One in full colour, one that includes reality and hope and courageous girls and boys, throngs of them. Courageous men and women too, men and women unafraid of speaking their truth on behalf of the marginalized. A story that transcends this moment, these bodies, our fears, one that is captured in the word Love.

Peace matters, everywhere of course, but right now I mean peace with myself, body and soul.

A blanket matters, and having an extra to share. Pretty things, yes, definitely. A colouring book, sunlight through the window, gold sparkle on hand-stitched medicine pouches, a blossom through the green.

Creative energy matters. The freedom to capture the things that matter, and then paint them, make something with them, love someone with them, or be on the receiving end of that creative love.

Empathy. Being able to feel the sorrow of another, perhaps even being able to diamond-heart transform it, and then return it
to them as something brighter and lighter and warmer.

Pleasure with which to balance out pain and sorrow. Hot tea. The arm of the man or woman you love on your back. The smile of your son or daughter. Sunshine on your face. Tastes that delight. A friend across the kitchen table. A circle of women with open hearts and ears. Men who have your back, or, depending on the situation, who are unafraid to show their tears. The ability to inspire hope.

Shady forests in which to walk, and which offer up clean air. Lungs in our chests, for cellular respiration and energy. Rich soil, uncontaminated and heavy-metal free, in which to grow plants that nourish and heal. Congee, as the gentlest of healing foods, to transform into muscle and movement.

Agency: Knowing what you need, and having a voice, feeling no shame.

Children. Babies who fill us with hope and laughter, and become children who re-teach us how to play, and then adults who make us thankful and inexplicably wealthy.

Our mothers and grandmothers and mother earth, right behind us, ready to catch us when we falter, our fathers and grandfathers and father sky, stronger and wiser than we once believed. The Universe as an ultimately safe place to land after all. Stories that have room for human beings, difficult emotions, defeat and despair, but also for splashes of light, resurrections, spring equinoxes, Easter Sundays.

Night Skies, Fires, Songs, Remissions

“We must sit at the fire and think about which song we will use to sing over the bones, which creation hymn, which re-creation hymn,” writes Clarissa Pinkola Estés in Women Who Run With the Wolves. “These are some good questions to ask till one decides on the song, one’s true song: …What are the buried bones of my life? In what condition is my relationship to the instinctual Self? When was the last time I ran free? …The old woman sings over the bones, and as she sings, the bones flesh out.”

This sitting by the fire takes time, and ideally, includes the warmth of fellow travellers. And it isn’t something that needs doing only once in life, or twice, not unless you’re infinitely luckier than most.

I am so thankful. For the many, many good things in my life, yes, for remission status confirmed again, yes, yes, yes! But perhaps even more so for the bright stars and warmth so often around the fire with me. For those who understand that the waiting period preceding the verdict on my remission status is a time of (to use Victor Frankl’s term) provisional existence—a time for sitting by the fire. (Thanks to my friend Ike for the reminder.)

This sitting by the fire is never easy, not for anyone, no matter the reason for it. Not when it’s our own new song we’re searching for and learning to sing, nor when we are present to another trying to find and learn theirs. And I sometimes have to be reminded that not everyone is comfortable with sitting by the fire. It is however, in my view, a wonderfully rich experience, at least as wondrous as it is to be present for the light of day that follows night, the joyous times that come in the wake of discovering even the first few lines of the new song with which we’ll begin to sing flesh back onto our stripped-bare bones.

There are, if we keep our eyes open, always others ready and willing to sit by the fire with us as we search for new songs. The humility and patience and emotional vulnerability, the generosity and grace and courage and compassion of these bright stars make them the most miraculous of human beings to me, the kind whose very presence is healing. My night sky has often been brilliantly lit, and kept the fires of gratitude stoked. I hope I am this kind of star for you too—now, tomorrow, whenever.