Yoga and the death of a pig

I sank into a chair and sat still for a few minutes to think about my troubles, and then I got up and went to the barn, catching up on some odds and ends that needed tending to. Unconsciously I held off, for an hour, the deed by which I would officially recognize the collapse of the performance of raising a pig; I wanted no interruption in the regularity of feeding, the steadiness of growth, the even succession of days. I wanted no interruption, wanted no oil, no deviation. I just wanted to keep on raising a pig, full meal after full meal, spring into summer into fall.EB White, “Death of a Pig”

Yesterday I tried to go to a regular yoga class at noon. It was the kind of hot yoga class that I used to go to every day without much of a second thought, you know, in the BC (Before Cancer) days. I should have expected that the class would be full of beautiful, fit university students. the instructor was like, “Okay, you’re in a plank. Can you raise your left foot? Now can you raise your left hand? Side plank time!” Then there was a sequence that involved going from chair pose to eagle to toppling tree to crescent moon to standing splits. At this point, it’s worth mentioning that I hate crescent moon more than anything, and it took me decades to even attempt it because, even at my most fit, I thought it was a cruel joke. Now I will attempt a standing split with the knowledge that it will never be pretty.

Just the day before I was at the downtown Y doing “chair yoga” in a dim room in the basement, where I was the youngest person by at least 20 years. And I won’t tell you that it was easy. “I think that chair yoga is as intense as the real thing,” Sue, my bright-eyed fellow-cancer sufferer told me chipperly in the Y locker room, “I love it!” So I went to chair yoga, and got to take a load off of my left foot, which is sprained for reasons that I need not go into here, but gives me a new appreciation for all the work that is done by the tiny muscles and bones in your foot.

It’s probably a good measurement of where my body is at. I go to acupuncture twice a week, as per one of my New Year’s resolutions, to deal with the peripheral neuropathy and the nerve pain in my right hip. I used to be a regular at adult fitness classes – yoga, weights, etc. – and now I’m looking forward to Tai Chi at the local community school tomorrow night. I used to climb 5.10s at the rock-climbing gym and hope (unsuccessfully) to pass the lead climb test. Now I take the kids to the climbing gym and cheer them from the sidelines. Sure, cancer takes its toll, but I’m aging at the same time, so maybe this is the season of life when I’m supposed to call it quits?

Or maybe I was too fit to begin with. I spent decades getting to be able to hold a tree pose, and now I’m just too wobbly. So today I went back to chair yoga, where I can still do tree pose but get to grab onto a chair if I wobble. But Sue was not there to cheer me on. In fact, I learned that Sue died unexpectedly on Saturday. The last time that we talked, we said a quick and partial good-bye in the Y locker room. “I’m sure I’ll see you again before your surgery next week!” and she quickly agreed. She was deep in conversation with someone else when I left because she knew everyone in that room. I was grateful to her for knowing just when to seek me out and share her experiences, as she always had her little walker to keep her mobile, her baggy lululemon pants and her leg wraps so that she could work out. “I wasn’t feeling great this morning, but then I realized that if I don’t come here, then my day will get even worse!” she reported. And then we made plans to go to chair yoga.

The news of the death of my pig traveled fast and far, and I received many expressions of sympathy from friends and neighbors, for no one took the event lightly and the premature expiration of a pig is, I soon discovered, a departure which the community marks solemnly on its calendar, a sorrow in which it feels fully involved. I have written this account in penitence and in grief, as a man who failed to raise his pig, and to explain my deviation from the classic course of so many raised pigs. The grave in the woods is unmarked, but Fred can direct the mourner to it unerringly and with immense good will, and I know he and I shall often revisit it, singly and together, in seasons of reflection and despair, on flagless memorial days of our own choosing.  –EB White, “Death of a Pig”

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Happy 2018!

Things that may have been heard during my Winter Holidays:

I got trekking poles for Hanukkah! I can go anywhere.

Let’s hope we have a White Christmas.

We can’t wait to see the cousins! I can’t believe that Neige and The Prophet are now the older cousins.

This is the year that I embrace being the friend who is bad at wrapping presents.

Jigsaw puzzles are really addictive, and communal.

 

Luke’s already saved the universe once, so it must be someone else’s turn. (And if we’re honest, we all wanted to go to Tashi Station.)

“Learn/teach from your failures,” is great advice, but books are Yoda’s enemy.

Oh, and on that note: you occasionally try to tell me that unpeeled avocado slices on a bed of fucking limes is food.

-15 Celsius with wind is really cold.

The thing that I want most for the holidays is a new fish tank, with real fish.

We have 8 new fish! Their names are Frey, Freya, Odin, Noir, Mr. Glowy-right, Mr. Glowy-left, Mr. Glowy-middle, and Mr. Glowy-straight.

2018 has got to be better than 2017. So says Catherynne Valente.

My New Year’s resolution is to meditate every day.

We have 5 fish!

We have 3 fish!

We gave Noir a Viking funeral.

Menopause begins in 3…2…1…

As culture, we don’t talk about menopause very much. It must be as important as puberty, motherhood, or any other major biological turning point, but I have yet to learn much about it. Some of my older female friends have been kind enough to offer a little wisdom, like: “Menopause changes everything,” “I don’t think I slept well for over a decade,” “Your body’s going to do what it’s going to do,” and, “Thank goodness that’s over.”  When I learned that menopause would start immediately upon having my ovaries removed tomorrow around noon, that was possibly the scariest part. That and the part about it being irreversible.  Keep ’em coming, ladies!

I’ve been reading Eve Ensler’s In the Body of the World: A Memoir of Cancer and Connection. I have a confession to make: I’ve never read or seen The Vagina Monologues.  But I know enough to know that it is highly ironic that Eve Ensler would develop cancer in her uterus and vagina. Her writing about it is wonderfully expressive and unabashedly political. It won’t replace The Bright Hour as my favorite memoir of the cancer experience, but it is way up there on my list.  If you read her work as earnest, it is insufferable, but if you read it as ironic, then it makes more sense. Here’s one thing she wrote:

HOW’D I GET IT?

Was it tofu?

Was it failing at marriage twice?

Was it never having babies?

Was it having an abortion and a miscarriage?

Was it talking too much about vaginas?

Was it worry every day for fifty-seven years that I wasn’t good enough?

Was uit the pressure to fill Madison Square Garden with eighteen thousand or the Superdome with forty thousand?

Was it the exhaustion of trying to change?

Was it the city?

Was it the line of two hundred women repeated in hundreds of small towns for many years after each performance, after each speech, women lined up to show me their scars, wounds, warrior tattoos?

Was it suburban lawn pesticides?

Was it Chernobyl?

Three Mile Island?

Was it my father smoking Lucky Strikes and my mother smoking Marlboros?

Was it my father dying slowly and never calling to say good-bye?

Was it my mother’s thinness and frailty?

Was it bad reviews?

Or good reviews?

Was it being reviewed?

Was it sleeping with men who were married?

Was it always being third?

Was it my first husband sleeping with my close friend?

Was it shopping and needing to shop?

Was it being a vegetarian for thirty years?

Was it Froot Loops?

Massive chorine in swimming pools?

Was it Tab? I drank a lot of Tab after I got sober.

Was it Lilt (the tosic-smelling substance my mother used to perm my hair)?

Was it Tame (the solution she used to get the tangles out)?

Was it crinoline (the abusive and starchy material I used to have to wear under all my dresses)?

Was it Shirley Temples? Ginger ale with red dye number two juice and a red dye number two cherry on top–a favorite of the sophisticated country club alcoholic father.

Was it drinking water out of plastic bottles?

Not being breast fed?

Canned chop suey?

TV dinners?

Was it turquoise popsickles?

Was it Epstein Barr?

Was it in my blood?

Was it already decided?

Was it deet?

Was it that I didn’t cry enough?

Or cried too much?

Was it promiscuous sex?

All those arrests at nuclear power plants?

Sleeping in radioactive dust?

Was it my IUD?

Was it birth control pills?

Was it not enough boundaries?

Was it too many walls?

Damn, I forgot to get arrested at nuclear power plants. But I did use Tame and drink the occasional Shirley Temple, so we have that much in common. I am grateful for those who can articulate what the illness experience involves, and Ensler has been an important voice for women’s experiences.

So it’s the holidays. I’m pretty sure that last night’s latkes are still slowly being digested in my stomach, which is at it should be on Hanukkah. As many recent articles and posts have noted, there’s not a lot, materially that we NEED over the holidays, other than the time and the experience of being together, so gifts are really not the point. However, your time, which has really come to be a stand-in for your life, is certainly valuable. It occurred to me that one of the nicest gifts that I have gotten is the people who have taken the time to read The Bright Hour or another cancer memoir that shares the experience of living with cancer on a day-to-day basis, so thank you to those who have done this, and if you are thinking of doing it, realize that this is something that you have done for yourself and for people who benefit from having their experiences voiced, shared, and heard.

Stuff Part 2: The clothes

I’ve already written about the Worst Day of My Life, which was the day when I found out I needed brain surgery. That was the day when I went from “living with cancer” to “living with cancer,” if you know what I mean. It was the day when I started out thinking of myself as someone who was handling life’s challenges and living with cancer largely under control. But as the day progressed I realized that I was back at square one, knowing that the cancer was really in the driver’s seat and was likely to pop up at any part of my body and wave its restrictions into my life (no driving, immediate admission to hospital, prep for surgery ….) This is enough to turn your world upside down.

There were more issues than I knew how to deal with, and a raft of new questions appeared. If I could not call the shots in my life anymore, who was I? And what about my family, who surely had not signed up for this insanity? Honestly, for them especially I just wanted a ‘normal’ life. But no, now they eagerly offered me food and rides and company and moral support… it’s enough to make a girl teary, all the time.

Given that there were more concerns than I could possibly hold in my head at once, my first concern was, of course, did I have what I needed to wear for this new life of mine?  In fact, this was a small subset of the question, What is my life, now that cancer appears to have taken over the driver’s seat?  And just like that, rather than ruminate on the new state of my life, I dove into the literature of closet organization.

I peeked down the rabbit hole of minimalism, and it isn’t pretty. I’ve heard this is a common thing for people who are experiencing a health crisis, in which they get overwhelmed by the “stuff” that increasingly fills our lives. I came home from the hospital hopped up on steroids, mind warped by opioids, and could only think about how I needed to SIMPLIFY my life.

The promise is eternal – control your physical existence and you can control your life. The idea first took hold when I was introduced to Marie Kondo’s Life-Changing Magic of Tidying Up. You can reject things! it promised. You can say no the obligations that come with owning and caring for the material. Beyond the organization specialists like Kondo, minimalist blogs offered even a little more, as they held out the promise that you could create a sense of personal attainment through the critical editing of your very existence. Minimalism offers a route to reject consumerism, excess, capitalism, identities

I’ve long known and believed that clothing is important.  As one CBC host recently remarked, “Clothes are a passport to belonging.” Wearing appropriate clothing is how we present ourselves to the world. It’s how we express our desire to belong or to blend in or to stand out. Clothing is what we wrap our bodies in for our own protection and care. I need to wear clothes to signal that I love and care for my body, even when it’s in a state of weakness and need. I need to wear shoes that keep me feeling secure while relearning how to walk. I need clothes to signal that I am still a committed member of society, that I want to be approached, to engage, to connect.

[An aside: I’m not sure that I nailed that last one when I traipsed around University Hospital in a bloodied hospital gown, especially not after I made it all the way past the cafeteria, down to the first floor, and out the front door for a breath of fresh air, swaddled in two hospital gowns and a drooping pair of hospital pants.]

Obviously, this needed to start with my shoe collection. I came home and successfully sold 2 almost-new pairs of boots. I found minimalist blogs like Style Bee and Un-Fancy, both of which offered a way to a soothing palette of colorless clothes that promised to uncomplicate my life so that I could focus on What Really Matters. I took all my clothes out of my closet, piled them on my bed, and created a wardrobe capsule. Keeping busy took my mind off the pain and at least half-convinced myself that I was working towards becoming the self that I needed to be for the coming winter of my … what, exactly? Discontent? Infirmity? Convalescence? Healing? After a few weeks my friends Elaine and Hilary arrived and talked me out of the 2/3 of my wardrobe that no longer fit my daily activities. Some items went out for consignment, some to Goodwill, and some are languishing in storage until the appropriate season for sorting arrives. Hilary now sends me regular photos of herself wearing some of my cast-offs as part of her successful work-from-home lifestyle.

I’ve long sensed a shift coming in how I present myself to the world. When you go from being a young, fertile woman to being a middle-aged caretaker of oneself and others, something shifts. You are no longer in the world to add beauty and desirability, to be admired or pursued. (This was always a rough go for me, anyway.) In such circumstances, a woman may suddenly come to understand her role as one of action and subjective experience, rather than passivity.  This transition has the potential to be liberating and invigorating, or it could be disappointing and erasing, depending on how you happen to experience it.  Style icons can easily shift from Audrey Hepburn, to Iris Apfel and various of my dearest friends.

I guess that now it is time to make a shift, from presenting myself to the world as feminine, attractive, and pliant, to presenting myself as a being in need of self-care and ready for action. When I start asking, “How shall I present myself to the world?” what am I really asking is, “How do I feel about my body, and how do I want others to feel?” I’ve spent a lot of time lately sitting in hospital beds and doctor’s offices reading magazines, flipping through images of women and men dressed to present themselves in various states of action and desirability to the viewer.  #MeToo

  • How do you feel about your body?
  • How do you feel about your identity?
  • How do you feel about your status?
  • When you feel fabric coddling or constraining your stomach, breasts, hips, feet, butt, etc., do you feel comfortable/acceptable/in control/appropriate/participatory?

There is something about the act of choosing and putting on clothes that makes me wonder about how I desire to be seen. The clothing itself is a mediator between my body and the world. It shows me, for example, that time has passed, even if I’m not aware that it has. My brilliant husband observed, “This is you, dealing with your life, in your most you way.”

 

What is pain?

I thought that pain was the thing that hurts, but now that I’m here, recovering from brain surgery, I realize that I don’t really know what pain is. When I woke up from my surgery, I just felt swollen and stiff all over and also somewhat numb. I didn’t know what could move and what couldn’t. I was doing so well that I skipped the intensive care recovery room and went straight into neurology observation. (I think, it’s all a bit fuzzy.) In the observation room, there were 6 patients and 3 nurses. The nurses were required to make sure that we were awake every couple of hours, that we knew which end was up (literally) and to ask us to rate our pain on a scale of 0 to 10.

I didn’t know what to say. Was I in pain? My head felt like it might explode. Maybe it was supposed to feel that way after being cut open. It wasn’t pain exactly, more like an extraordinary amount of pressure, like what I felt like when I was in labor with no drugs, but that turned out okay.  There was a woman to my right complaining of pain, saying she had to see the doctor, that her pain was unbearable, and all I could think was, “I can’t go to sleep until this woman’s pain is under control.” But it never was under control that night, not after a visit from the resident on call and administration of additional pain meds. At one point I think she got tired and said, “I’m sorry, I’m just not used to throbbing like this.” I will never know what kind of pain she was in and whether it got better, but it’s not my job to know, either.

As the days wore on, I had to rate my pain less frequently, but the nurses and doctors still asked every time they saw me. And it was clear that the number that I gave them back, meaningless to me, had the power to trigger action. I also learned that pain does not necessarily feel like a hurt. Instead, I was in uncontrolled pain with my normally low blood pressure spiraling upward, my body consumed by mild shakes that I could not control, and swelling in my neck precluding normal swallowing of even small sips of water and medication. Still, on that first day after surgery, one of the nurses had said, “She’s swallowing fine, you can cancel the visit from the Speech Language Pathologist.” Luckily, my friend Sarah, the pediatrician/public-health-officer/epidemiologist/outward-face-of-syphilis, had a talk with my team to let them know that my pain situation was not under control and insisted that it be addressed before bedtime (at least before the resident’s bedtime). Reluctantly, the team switched me back to pain injections instead of the slower acting tablets that they had put me on.

But to go home I had to get off the injections. The nurses strongly encouraged me to try to stretch out the time that I spent between pain meds to wean myself as soon as possible. On day 3 after surgery the nurse told me that she wanted to make sure that my pain was below a 5. As long as I told her it was below 5, she was happy. I’m not sure what she thinks below 5 means, but to me it means that I can swallow, am not shaking, have normal blood pressure, and don’t feel the dread of encroaching stiffness in my neck.

Turns out, pain is different for every person, and some people have dedicated their lives to understanding it from different perspectives, such as those of physicians, nurses, patients, social scientists, etc.  When I was first diagnosed with breast cancer, some people joked, “Welcome to the club that you never wanted to join!” But I consider the club of people who live with chronic disease to be another important one for me, and I am grateful to them for teaching me a bit about what it means to live in a body that is at odds with itself or with society at large. One friend and disabilities activist, Layla, posted on her Facebook feed yesterday that she was required to “provide documentation of pain from a phantom limb” to the Powers That Be. We can agree that is funny, right?

Now it’s a week after surgery and I am running out of pain medication once again. I went to my family doctor today and talked through what I can expect. She is mostly reassuring, but sometimes the conversation verges on the ridiculous:

Them: Do you have a headache, or do you have pain in your head?

Me: Do you mean other than the place where you cut my head open and sewed it back together?

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Lesson 1: Feel your feelings

My dear children, upon learning that they were not allowed in the chemotherapy clinic, asked me to bring their teddy bear and hedgehog with me for love and comfort, and they have been at my side for every treatment. Now Pink Willy, Hedgie, and I have been through the physical and emotional wringer of 6 months of chemotherapy together, and we have felt some things.  We will indulge in sharing some of these things with you.

Friends, there are a lot of feelings that come with a cancer diagnosis, and it can be overwhelming.  The initial feelings are often of shock, disbelief, and fear.  Arthur Frank said it well in his memoir At the Will of the Body: 

What was it like to be told I had cancer? The future disappeared. Loved ones became faces I would never see again. I felt I was walking through a nightmare that was unreal but utterly real. This could not be happening to me, but it was, and it would continue to happen. My body had become a kind of quicksand, and I was sinking into myself, my disease.

It can take months or years to work through what is happening to your body and to your life story.

Many people can tell you the exact date that they were diagnosed with cancer, and they use that date to mark and celebrate their survival.  I was diagnosed with cancer in July, and that was hard, but the story really took a real turn on August 26, 2016, when the oncologist told me, “There were suspicious lesions on your liver.  We need to confirm with a biopsy, but this has implications for our goals of care.”  Goals of care.  With those three words, my heart sank.  From my work researching medical communication, I knew what they meant—that my cancer was no longer considered curable.  I went home and looked up Stage IV Breast Cancer and Metastatic Breast Cancer and found even more frightening phrases like “palliative care” and “supportive care,” terms that are familiar to me in the context of the medical care for dying.

The things that had previously occupied my mind suddenly took on a hazy, unreal quality as it became clear that the story of my life had taken a turn into cold and uncharted territory.  And the most dominant emotion was fear.  It’s natural to be afraid when you find out you have a serious, gravely serious, illness.  Afraid of what might happen.  Afraid of not knowing when the next bit of bad news will strike or what it will be.  Afraid of seeing my loved ones bear the pain and emotional burden of my illness.  Afraid of losing the life that I have crafted for myself.  Afraid of not having a place in the world now that the story I thought I was living had been put through an imaginary shredder.

The thing is, it’s hard to live in fear.  It immobilizes you and numbs other emotions.  In actuality, I was more afraid of fear than of anything else.  I was afraid that if I let myself be afraid that it would mean that things were really as dire as I thought they were.  And if I was afraid now – when I’m actually quite healthy – then how would I be able to cope if things took a turn for the worse?  Turns out that it takes more effort to push fear away than to feel it.  Facing any of life’s challenges is hard enough without the added shame of harsh judgement on one’s own emotions.  Once I let the fear in, it gave way to the grief that I needed to feel over the loss of my life as I knew it, as well as gratitude for all that I have, particularly for the love that fills my life.

Reading How to Meditate by Pema Chödrön helped a lot.  Many introductions to meditation emphasize the practice of focusing on the breath and letting go of thoughts, but Chödrön’s book is an instruction manual for what to actually do with your mind while you are meditating. She offers a series of exercises, including some that train your mind to experience emotions, even difficult ones:

You need to breathe with the emotion; you don’t breathe it away. If the emotion does dissipate, fine. That’s what just happened—and it does happen. Let it be like that. But the point is to go to our experience rather than to go to our strategies or conceptual ways of exiting. You’re breathing the emotion in, and so you’re being with it. You are it, actually. You could even imagine that you are breathing the emotion in to the heart. Imagine you are breathing it into the heart—the large heart—if that helps you.

… Over time, when we stay with our emotions and breathe with them, the emotions can morph. Here is where we really develop the undersatnding that emotions are just energy; we see that emotions are simply energy that we attach our thoughts and stories to. Anger morphs into sadness, or it morphs into loneliness, or perhaps it even morphs into happiness.  All of this can happen.

There was one fear that I was able to put to rest, and that was the fear of suffering alone.  Being diagnosed with cancer can make you feel like a non-being, cast out of society.  It is as if you have literally failed at life, as the diagnosis says, “Sorry, no life for you!”  I don’t know, maybe it’s due to some kind of primal instinct to withdraw when facing illness, or maybe it’s our late-capitalist society telling us that our worth is contingent upon our promise of productivity.  But so many people responded with love and compassion that reassured me I was very much in their hearts and still worthy of love.  I drew strength from the gifts of kind words, food, books, gifts, errands run, good company, and visits from near and far.

My worst fears have not materialized yet.  I’ve been tired, grumpy, happy, sad, silly, and run down, but I’ve made it through half a year of this cancer meshugaas.  Last week I got the results back from my latest scans.  My cancer has responded as hoped to my drug regimen, with the cancer shrinking to the point of near-invisibility.  Even my experienced physicians cannot feel the tumors when they examine me.  For now, at least, this makes me one the “lucky ones” with an “excellent response” to chemotherapy.  The joy that I feel at being one of the “lucky ones” among metastatic breast cancer patients is tinged with more than a hint of irony and poignancy.

So here I am, 6+ months in, and I can (often) say that I have Metastatic Breast Cancer without shedding even a single tear.  It turns out that the thing to do when your story has been put through the shredder is to start telling your story all over again, even if you’re not a very good storyteller, and even if you’re not sure where it’s going.  I’ve been inspired by others who have told their stories, like here and here.  And now, clumsily, I tell mine.