Playing the Odds: A couple hundred bucks a month for an 8-9% survival chance increase

“I’m old, so I have to get up and move my legs.” Returning to my seat on the Vancouver-bound airplane, the man sitting next to me, a man who wouldn’t need a fake beard to convince a small child he was Santa, explained. He’d gotten up also.

His admission makes me remember each time I’ve been warned. Hormone therapy has all kinds of side effects, blood clots being on the long list each medical professional- the oncologist, the pharmacist, the nurse who calls himself “The Man on The Breast Team” and giggles each time he says it, like he doesn’t say it every time. The OR nurse who helped me put on the surgical stockings advised me to keep the impossibly tight thigh highs, “For airplanes. Because you’re at high risk. And these are expensive.”

Medically induced aging, that’s what I’ve got. Not the kind of aging you can see right out- not the kind that causes Santa-hair or the kind that causes confusion about how to use social media or personal technologies.

Just the kind that is simultaneously fussed over and ignored.

The kind that involves staring at death. The kind that involves making decisions about shutting down ovaries, for fear of what they produce. The kind that involves wandering through cancerland.

Just the kind that is simultaneously fussed over and ignored.

There’s a new hormone therapy. I’m switching to it. There’s not one right way. No one knows what the right way is, if there is one. But a study came out recently, called the SOFT Trial. The results were published, and the cancer agency made some decisions, about whether they will fund this new, recommended treatment.

They will not.

That’s because there’s not very many patients for whom it would make a difference. Put another way, the fact that it matters a whole lot for a few bodies, and that it doesn’t matter for the majority of bodies isn’t cost effective. The policy seems to scream to me, your body doesn’t matter enough.

Because for me, it will matter. For me, the treatment recommended by the SOFT trial suggests a 8-9% five year survival increase.

That means that if we were one hundred pre-menopausal patients, and if all one hundred of us had grade 3 cancers in our breasts, and if all one hundred of us were under thirty-five, eight or nine less of us would die. EIGHT OR NINE WHO WOULD HAVE DIED, WOULD LIVE. EIGHT, OR NINE. We don’t know which eight or nine. Some will still die. But eight or nine who would have died, would live old enough to go into menopause naturally. Eight or nine who would have died, would live long enough to grow wrinkles in their foreheads and babies in their bellies and careers on the horizon.

The problem is, the standard of care is not built for me. It’s built for a middle aged woman, with a low or medium grade cancer, who has already gone through menopause. And so when the cancer agency decides what kind of treatments to make standard, they don’t factor us in, even if we are one hundred and eight or nine of us would have lived with the new treatment.

And so I will pay. Because there are not enough of me. Because there are not enough of me to make this treatment financially responsible. What does it mean to be body, a body the state decides not to care for, because it isn’t financially responsible?

Certainly, it means my bank account will sink lower still, as I try to make ends meet on an adjunct professor’s meager wages (that is a whole different blog post). It means I will commiserate with my cancer buddies, about whether the cost is worth it to our lives. It means some of us will not be able to afford to switch to a therapy that means our chances at being alive five years out from our diagnoses jumps from from 65% to 75%. Can you believe it?

It feels like the world is eating its young. It feels odd that folks aren’t out protesting. It feels like our bodies don’t matter. They certainly didn’t find their way into mattering enough as the policy was voted on, the decision made. We weren’t even there to raise our hands. They forgot to tell us when the meeting us. And we got eaten, swallowed whole, written right out of medical policy, our best interests cast aside for financial responsibility, because the older masses matter more. Because someone else knew different, and someone else counted, but they didn’t count our heartache, they didn’t measure our dreams, they didn’t account for our desire to live.

So don’t tell me your so and so had cancer and everything was covered. It’s not true in the US and it’s not true in Canada. No, not even in Canada. And besides, stop being that person who loves to position themselves as close to the cancer, as in the know. You’re not in the know, you’re out of it and your “stories” are not helpful. In Canada, I’ve paid for shots to stop the nausea and treatments to preserve fertility and pain medication post-surgery. Yes, I’m plenty aware I’ve been fed cancer treatment on a silver spoon compared to what I’d have gotten living in the country of my citizenship- which, as a graduate student would have likely included (and as an adjunct professor would certainly have included) piecing together chemotherapy in non-profit clinics, addicted to the drug the nurses call the red devil and unsure about how I’d get the next fix my oncologist insisted on. That’s a real thing that happens. But I’m also absolutely convinced, and if you disagree tell someone else because I have zero interest in arguing and I’m not going to entertain your logic unless you agree with me because anything else feels viscerally violent, that everyone walking this planet deserves completely free access to the best medical treatment around.

And you know what else everyone deserves? To be free of disease born of the environmental disaster that we have created, to be free of hormones that stave off what should be a normal substance in the body, to be free of needing, of requiring medically induced aging that can’t be seen, the kind of aging that rubs most deeply on the soul and makes the future blurry.

So let me just go pay for my eight or nine percent five-year survival rate increase. And if that’s too real for you, I agree, it’s effing morbid. So is wondering if the kink in your calf is a blood clot from your hormone therapy. So is wondering if you should explain to Santa’s body double why you need to get up and roam the airplane as much- maybe more?- than he does, even though he’s decades older. So is deciding an eight or nine percent survival increase for cancer patients who’ve barely had their ten year high school reunions isn’t financially responsible. So what are you gonna do about it?

Good Bye Mama Bear, Fare Well.

In the golden days of summer, I met her. “I’m in with the young ones! They think I’m young,” she cried out as she introduced herself. Only minutes into our meeting at the Callanish retreat, she lifted her t-shirt to show me her two round, perfectly matched nipple-less boobs. She’d been sunbathing topless, she told me, sunbathing until they were the perfect shade of golden. I knew right away, she’d be the type with the flow-y skirts, clothing printed in brilliant colours, and charms hanging from around her neck. She was the only one who, though closer to my mother in age than to me, climbed into the hot tub with Ashley and I to stargaze and imagine, to compare cancer notes and tell stories of oncologists and side effects.

Char wiggled her way right into my heart. Maybe it was the steaming coffee she brewed every morning, just as I was waking up. Maybe it was the sliced fruit she left for Ashley and I as we rushed in the morning. Maybe it was the late nights she stayed with me in the art studio. Maybe it was the advice to always bring my inside voice with me on life adventures. Maybe it was her steady belief in the goodness of the world. Maybe it was her ability to disrupt the age barrier. Maybe it was the peace charm she wore around her neck, the charm she showed me as she told me the story of walking on the beach, hoping for peace, when a plastic peace trinket appeared among the rocks at her feet. Maybe it was the way she mothered me, and everyone else, too. Whatever it was, she climbed into my heart and set up camp. In her, I could see who I wanted to be when I was all grown up (even though we all not know that’s never going to happen!).

It was a hot afternoon and I was feeling exhausted and sad for all cancer has taken, for all the losses, for all the forever changes. She came and sat on the corner of my bed, where I was curled up amid the pillows. She rubbed my back and wiped my tears and told me it was OK I didn’t have babies yet, and she told me she knew I’d be a mama someday. She cuddled into the pillows with me and the sunlight streamed into the bedroom and kept us warm. We talked until the words ran out, and after some silence, we laughed and laughed. We laughed at how she heard me singing in the creek, when I thought no one was listening. We laughed at our mismatched boobs, hers nipple-less and mine full of corners as though someone shoved a book under there. We just laughed. And she mothered.

Char cared. She showed me how to care, how to care in the details and in the fleeting moments. Her presence was warm, full of love and laughter, replete with sass and spice. Goodnight, sweethearts, she called as we climbed into bed, our fingers still stained from playing in the art studio. Good morning, coffee is ready, she called up the stairs, always awake first and taking in the morning light from the porch. She evened out the little duo I formed with Ashley, the third point to our little triangle, the other person to whom I felt most connected. Mama Bear, we called her. Mama Bear, she was. We emailed. Here and there. This and that. Always lots of explanation points, smileys, words laced with sarcasm but somehow also full of warmth.

Once she convinced me to go with her to a Callanish movement and meditation event. I went because she was going, and because my recent surgery banned me from Bikram. It was January, and she was exuberant. She asked me a hundred questions, and listened so carefully to the stories I told her. I shared the most precious of news- news that is not yet public- and she was ecstatic. For me. So sick, so ill, and still her grin reached from ear to ear, and she hugged me hard and close. Mama Bear, indeed.

I found out today. The Art Therapist Who Presides Over Acrylics and Feathers and Sand told me. Better than finding out when the offensive email shows up in my gmail, bearing the saddest of news. Char is gone. She died at home. Breast cancer took her. She was not old enough to die, and we the people of the world, we were not old enough to lose her. The gap is wide, the ache in our hearts, the enormous hole she left in the world that will never be quite the same again. And this afternoon I rode my bike, and the tears fell into the wind, and I missed her, and I wished I’d visited her, and wished she told me, in those emails even just weeks ago, how hard it was getting. I rode and I rode, down to the ocean and along the water, and it was raining.

Char, I promise to take my inside voice, I promise to sing in the creeks, I promise to let the world deliver tiny plastic peace charms just when I need them. I am so sorry Char, I am sorry you left to soon, sorry it hurt, sorry your children will forever miss their mom, sorry we can’t have tea again, sorry it happened, sorry the world continues to spin without you. That spin without you is unimaginable, unthinkable, unbelievable. I’m so sorry. I made you this little video, today when I got home from biking. I changed into sweats and dumped out the coffee beans, and it smelled like you in the mornings, the early mornings, making coffee for us even though you didn’t have to, caring so deeply even when you, too, came to the retreat to be cared for. Your care was so healing. Caring about you too, was so healing. Our friendship was so healing, for me, and I’m so sorry you are gone now, gone forever. This is for you, with so much love, from me. Goodbye, Mama Bear, fare well, friend. I will think of you often. Love you.

chipi chipi

When the fog hangs low in the city of Xalapa, Mexico, and when the air is heavy and damp, and when the clouds make the mountain peaks disappear in the distance, this is when my Mexican host mom from so many years ago would call the weather chipi chipi. When someone feels raw, eyes pregnant with tears, heart wide open and the sting sharper than when you scrape your hands on cement, this is when my Mexican host mom from so many years ago would call the mood chipi chipi. 

Today there was sad news, news that matched Vancouver’s chipi chipi weather, news that felt like the cold air and the big, fat rain drops falling onto the sidewalk. Someone who was a bright spot in the world, someone with a heart full of love and care, someone who was most certainly present in the world only a few months ago— that someone isn’t here anymore. Kathy’s gone. She left. Her hands are not chopping onions in the kitchen, she is not mixing pancake batter or planning meals or singing songs in community. She is gone. How oddly final.

The Art Therapist Who Presides Over Feathers and Sand and Acrylics called today, about something else entirely. I knew something was wrong as soon as I picked up the phone. Her voice was heavy and measured and sad, as she shared the news that her dear friend- and the woman that had beautifully, hopefully, awesomely cooked stunning meals for us when we were on retreat this summer, was gone. Kathy was a nutritionist, a cook, a woman who filled plates with green, with heart, with vitamins, with love. She sang with us in the evenings. She gave us apples and coffee filters so we didn’t have to walk to the kitchen for a pre-breakfast snack. She cared deeply, and she poured her love into the food she made at each meal-time, and the magic, the friendship, the love, the hope- you could taste it. She nourished us, she cared for us, she helped us heal.

And she is gone.

I didn’t know this woman well. She explained to me one morning, as she stood beside the bread-toaster at breakfast, why spelt flour is OK even though it has gluten in it, and why it is so different from wheat. She told me about  how she found the whole, diverse ingredients of Mexican food to be so healthy even decades before healthy food was trendy, and we bonded over our shared love of Mexican food. She sliced an apple for an injured mouse I was caring for, and reminded me to make sure the mouse had water, too. She cared.

I know she cared because she made me meals without mushrooms. That’s right. Not because I’m allergic, or because of something serious like that, just because I hate mushrooms. Everyone else had their mushroomy meals, and she made mine, separate, waiting for just me, those enchiladas without mushrooms and that bowl of leftover veggie soup instead of cream of mushroom. It seems insignificant, but it isn’t. Rarely have I felt so cared for, so carefully accounted for, so visible, as when Kathy lovingly prepared me something different, just because I didn’t like “what was for dinner.” I come from a family where what was for dinner was what was for dinner, and there wasn’t a second option. Take it or leave it, but don’t expect to have ice cream if you leave it (sound familiar?). And so imagine the care, the surprise, the relief at being so seen, so visible, so tenderly accounted for- that someone made me food without mushrooms. The first time she gave me a special plate my eyes got wide, and I thought “This is for me? Really?” It was. It was for me, those plates without mushrooms. It was one of the times in my life I felt most cared for. No mushrooms. Not a single one. How kind. How special. How thoughtful. I was so touched, so loved, by Kathy.

And so it feels chipi chipi. My heart aches for her, and I wonder who was taking care of her, I hope someone held her close and gave her fuzzy blankets and made her warm tea, I hope she knew how very loved she was. And I am afraid she was alone, I am afraid she didn’t get to share those last moments with loved ones, I am afraid she didn’t know how loved she was. Maybe she did, and I will hope so. My heart aches for her colleagues, the other facilitators at the retreat who worked with her and loved her, and who have lost a grand friend. My heart aches for her family,  for those closest to her, those with a big giant Kathy-sized hole in their hearts, a hole that will never quite be filled again, a hole who’s edges will always ache, even after they have scarred over and formed a new shape where Cathy was. Chipi chipi because the world feels cruel and harsh and cold, chipi chipi because it doesn’t seem fair or real or believable, chipi chipi because she was so full of life, and knowing that she won’t ever inhabit the world again, move again, love again, laugh again, is so very dissonant that it sounds like two young musicians playing what should be a lovely sound, but instead one is playing B and the other B-flat, and it scorches the ear. It sounds wrong. Chipi chipi, because someone great isn’t here anymore. Someone I didn’t know well is gone now, but she was someone I knew well enough to know we should be remembering, mourning, missing, and again remembering. I knew her well enough to know she was great. Chipi chipi, indeed.

In this afternoon of chipi chipi, I did a few things. I closed my laptop and took a deep breath. I talked on the phone to a good friend. I walked to yoga in the rain. I practiced hard, and hot, and whole, and it felt good. I walked home from yoga in the rain, and I made a chicken and tomato dish for dinner that was topped with piles of fresh herbs and parmesan, and I think Kathy would have approved. And then I made this little stop motion. For you Kathy, because the world is a little more chipi chipi without you.

lessons on life and death from a wood mouse

My clothes smell like campfire. As my marshmallow falls from my stick into the fire for the third time, I realize something is different. Someone is different. Me. I’ve spent the last week at a Callanish Healing Retreat for people who have dealt with and are dealing with cancer. For a week, eight of us huddled together in a circle and told stories, shared questions, compared experiences. Around us, the Callanish team gathered, supporting, providing comfort, facilitating, accompanying, listening. They were six life-altering, world-changing days overflowing with love, comfort, memories and hope. There are many stories I’d like to write, so today I’ll start with one near and dear to my heart, a story about life and death I learned from Consuela, a gray wood mouse with a white belly.

I met Consuela the morning after the hardest day. On the hardest day, I was angry and frustrated and sad and misunderstood. On the hardest day, we talked of death and dying, and my heart felt shrunken with fear. On the hardest day, my toes curled into the ground and I willed myself to believe “not me, not me, not me” as we were asked to write about how we might like to die. On the hardest day, others asked questions about dying, and they were answered, and I wished I couldn’t hear and imagined myself at yoga instead, even though a wisp of my spirit was curious about the answers. On the hardest day, the other young woman participating and I staked out a private lunchtime picnic where no one could find us, and we dangled our legs over the creek and spoke of not-dying. On the hardest day, she and I held tightly to life, we refused to glimpse over the edge to death, we were shaken as death was placed on our paths. On the hardest day, I felt terribly shaken, afraid and tender. On the hardest day, I felt the joy slipping away as it did when I was pumped full of chemotherapy. On the hardest day, I watched the sparkle dim as it did with each oncology appointment. On the hardest day, I sensed the disconnect between me and my body and the world widening, as it did each time I couldn’t explain my cancer to my loved ones. On the hardest day, death was staring at me in the face and I was running spooked, refusing to make eye contact, angry to be sharing the day together.

It was the next morning I met Consuela, and the next morning that she wiggled her way into my heart to teach me about death.

She was shivering, huddled on the dew-covered deck. People gathered around her, staring. My heart thudded when I saw her. I covered her with a towel, and then coddled her in my hands. She was cold, her tiny feet unsteady and her body shivering. She sucked at my finger, her eyes were closed, her little nose nudging at the creases in my hand. She barely moved. I wondered if she was a tiny baby, and how she escaped from her mama’s nest. I wondered if she was an adult, afraid and in shock. I decided she was my baby, my warm little body to nurse back to health, my small rodent friend to play with in the forest.

I settled her in for a nap as we began a musical session together, and I wondered if she enjoyed the sounds we each shared that morning. Did she like our singing, our oboe playing, our spoken word? Could she feel the love vibes and the friendship and the hopefulness? I imagined she could, as she rejuvenated in a bed of hand towels and tissue in the corner of the room. Consuela seemed perkier as we closed our music-sharing and headed to lunch. She pooped, she sucked water from damp corner of towel, she sniffed and opened her eyes. And then again, her sprite curiosity began to dampen, her soft gray body began to droop. Her lack of skin elasticity was a sure sign of her severe dehydration. I whispered to her that she needed to sip water, but I knew she was fading before my eyes. We decided that after lunch, we’d make her a hospice bed outside, near where we found her, so she could die in the wooded forests she called home.

Consuela must have heard us speaking deaths’ name and become angry, as I had on the hardest day when death was thrown in my path. She jumped up to say hello, scampered around, sniffed my fingers. What a transformation! We imagined the little bed we were building would only serve as a launching point, somewhere for our little mouse to rest briefly before she scampered off to tell her story to the other mice, a story of human encounter that would certainly become legend among the forest animals. We gathered together, many of us near the deck where we had found her that morning. I arranged a bed of leaves gated with dandelions and that backed into the creek-brush.

I knelt down with Consuela near the bushes and J The Wise, who is at the helm of Callanish, knelt down with us and we prepared to say goodbye. I blew Consuela a kiss and scratched the back of her neck. As we settled her into her leaf-bed, something in Consuela shifted. J The Wise asked what was happening, and those gathered around us murmured. Little Consuela’s foot began to tremble. I was flooded with memories of other small animals I’d cared for in their final days and hours, and I knew immediately. Consuela had begun the dying process. J scrambled closer into the bushes with me, and our hands encircled what was now most certainly a hospice bed. Consuela began to seize and I gasped, startled, at the violent movements of her tiny body. “It’s OK, it’s OK,”J The Wise said quietly, with her hand on top of mine as she asked, “Do you want to stay?” I knew we couldn’t leave little Consuela alone in her leaf-hospice bed, for not twenty-four hours before, we had talked so much of not dying alone, of being comfortable near death, of seeing nature and of feeling love during the dying process. And here we were, huddled with Consuela, and J The Wise was there, her head in the bushes with me, and G and A gathered close. There was much support and lots of togetherness, as our little wood mouse moved through the dying process. And so we waited. I stroked Consuela’s silky soft mouse-back and marveled at her big ears and delicate toenails. I wondered if we should turn her onto her belly from her side, but J The Wise, always a nurse, reminded us to leave this tiny seizing body on its’ side. We told her we loved her, and held her tiny paw.

We waited. Consuela’s seizing waned, and as it did, she began taking long breaths that filled her tiny body. Her little white belly expanded with each one, rising and falling with longer and longer gaps in between each breath. Sunlight filtered through the creek-brush, and the green leaves sheltering Consuela shimmered in the afternoon light. We were transfixed. We waited. The creek continued to rush by, its soundtrack soothing. We sent her meta. We told her we loved her. Her eyes burned awake still, and slowly and at once, they seemed to take on a reddish hue. She breathed again, a long, slow breath that lifted each of her ribs. And then she was still. Our little mouse friend had left us, gone on to the next world, and only her body was left behind in the mouse hospice bed. I covered her little body with a big leaf, tucking her in as her kind, bright spirit left her. She was gone. We stood. Everyone was still there, waiting, all of us sad our little friend had died.

I guess it was time to dance with death, after all.

We left her little body in the bushes, listening to the creek and letting the sun warm her fur for the last time. Come afternoon, we gathered purple and peach tissue paper, we tied a bouquet of yellow flowers, we cut yellow felt into hearts and gathered silky jewel toned ribbon. Next to the creek, I dug a shallow grave with a rock and lined it with the delicate purple paper. We settled Consuela’s little body in a large green leaf, and wrapped her in peach tissue paper. We tied it with a bow, and topped her papery casket with the tiny bouquet and soft yellow felt hearts. There was a eulogy. We loved her, and she was a good mouse, and a tremendous teacher, and a kind spirit. Her little body ready, we settled her in the ground next to the creek and slowly filled the grave with moist dirt and river stones. Piling the river stones high and in a circular pattern to mark her short but extraordinary journey from the woods into my hands and into our hearts and finally with us into death, we said goodbye. It was a goodbye weighty with gratitude, a serendipitous moment in which all the knowledge on death I had so feverishly resisted the day before coursed through my body, through these relationships, through our knowing. We were with death, with Consuela. And yet, funerals are for the living, as someone pointed to the day before as we all spoke death. So the funeral was for us, we were the ones left behind. Did the animal kingdom have a farewell ceremony, as well? Did they wonder where she was? Were they sending out search parties headed by mice with night-vision goggles? I wonder if they found her grave, if they gathered near the creek, maybe late at night under moonlight and remembered their brave mouse friend, like we did. Consuela’s funeral was for those of us human-friends of hers left behind, wishing we could ask her, “What does death look like? What’s over there?”

To call Consuela a friend would be true, but calling her a friend would barely begin to suggest how deeply she touched our hearts, how humbly she taught us lessons of life and death. Consuela the wood mouse was one of the greatest teachers that has ever graced my life. Great teachers know how to pace lessons for each spirit, they sense when learning can happen and tread gently and tenderly around the learning heart. Consuela was the greatest kind of teacher, the kind we all aspire to be. She waited for us on the porch, and snuggled with me throughout the morning as she worked her way into my heart, cupped against my body. I wonder how she ended up there, if she knew I’d find her, if she felt secure in my hands and if she was afraid of the unknown. Consuela rested in a cardboard box in the shade, waiting, while we ate lunch, and peeked out from my hands, sniffing and curious, as we built her hospice bed. And when we were as ready as she was, she gathered us into her presence and began the dying process, not a second too early, nor a second too late. She showed us dying can be done gracefully, with dignity, peacefully, outside. She took our hands and led us gently into this lesson on death and dying.

Only twelve hours before I met Consuela, I refused the invitation to think death, I bristled at the call to wonder about my own beliefs about dying. Consuela gently showed me that death lives inside all of us, in our bodies and spirits, in our friendships and hopes. Death is always there, living in our bellies, rooted through our feet into the earth. Death ties us together, braids our bodies into the earth, links our knowing into a much larger networked, living universe. We live dying, we will all die, we will all know death as Consuela did last Wednesday morning, and I hope we can know death with as much grace and love and dignity as Consuela did. And you know what? As J The Wise quietly said when I first trembled in horror at the beginning of Consuela’s dying process, “It’s OK.” It is OK. Dying is OK.

Consuela’s entrance into my life was profound, even as momentary and fleeting as our friendship was. Her presence was more than simple presence, it was the universe, taking care and the earth holding all her beings gently and in concert with each other.

Thank you, sweet Consuela, for sharing your soul with us in life, for teaching us about death, for letting us learn from and with you. You will not be forgotten.

Pictures to follow.