Notebook: My Character Clemency Begins Chemo

Editor’s note: In the months since I last wrote to you at Joyous Paradox, I have begun a novel. Four women meet and bond in a healing garden, a cancer support center modeled after the Virginia Thurston Healing Garden in the town of Harvard, MA. GrubStreet Creative Writing Center has given me a scholarship to the Novel Generator, a nine-month program for writers working on their first draft. In the following excerpt, Clemency Weems, a Boston widow in her mid-sixties, has begun chemotherapy for metastatic breast cancer. In this scene, she is imagining what she will talk about in a support group at the garden. — MAB

Rogier van der Weyden, Descent from the Cross (detail)What story will Clemency tell today? A chemotherapy treatment regimen comes with its own built-in narrative arc, no matter how changeable the side effects, no matter how variable the outcome.

First you enter the cave, then the poisons are pumped into your body, and then you go home to await the symptoms, which could be fatigue, nausea, vomiting, chills, fever, diarrhea, itching, weakness, mouth sores, dizziness, tingling and numbness in your feet, or a profoundly convincing sense that you’re better off dead. Or that you’re dying. Or that you’ve abandoned your Life, like abandoning a small child in the middle of a crowded street fair.

You float above the crowd at the fair, watching your Life scan the strangers’ legs and call out for her mom.

“Mommy, where are you?” she screams. She cries, her face pinched tight around her eyes/nose/open-and-astonished mouth.

Someone comforts her, arm around her shoulders, and rubs her back, the flowered cotton dress soaked with sweat between her young shoulder-blades. She buries her face in the Comforter’s broad shoulder.

Then, Kleenex administered, trip to Porta-Potty completed, your Life stands hand in hand with the Comforter at the fried-dough stand. Powdered sugar or maple syrup? Both? Both.

Where is your Life when your body reaches the nadir? More precisely, the nadir is the point at which the chemo drugs have killed their maximum number of white blood cells for this cycle, as well as their maximum number of cancer cells and red blood cells, and swift-dividing cells in your mouth, digestive tract, and hair follicles. Fewer white blood cells mean that your immune system is at its weakest.

For these few days of nadir, you stay home, avoiding crowds, imploring your family and friends not to come if they have colds or other infections.

Do you have to worry that your daughter-in-law Rhonda, who makes no secret of her frequent yeast infections, will use your toilet and leave little yeast organisms behind to attack you from within?

Albrecht Dürer, Portrait of Barbara Dürer, Dürer's Mother (detail)Is your use of disinfectant wipes compulsive yet? Or do you pray before grasping the glass knob on your bathroom door that everyone has washed their hands thoroughly before leaving the facilities? Is your Life in isolation, that young creature in flowered cotton, cared for by masked and gowned attendants?

Finally, the hoped-for recovery. Symptoms recede. One morning you wake from restful sleep. You and your Life, joined in one shaky body. Unutterably weary. Unutterably relieved. Yet the ground is no longer the ground, the stone no longer the stone. You float in the knowledge that true North is no longer true.

– Mary Ann Barton, 9/24/2016

Thanks for Responding to the Survey for Rest, the Book

May 11, 2014

Dear Readers,

Last week I asked if you would help me write my book about caregiving, Rest, by taking a word-association survey (Want to Help Me Write My Book?).

Many of you took the survey. I am so grateful for your responses. Click on the REST Survey #1 to take it now. Feel free to take it more than once, as some of you have done.

Brilliant, springboard, resilience, woof, idleness, forgiveness, hunger, satisfaction. Why are these eight words important for a book about caregiving?

The words seem chosen arbitrarily, as if I’d opened a big dictionary eight times at random and stabbed down with my finger on the page. Which is true, in a way. I was following my intuition. Your associations to these eight words, I told myself, would be a resource for me in my writing, even though I didn’t know why.

Yet reading your responses, I know so much more about the gut-level process of writing this book for you. Your willingness to read my words has been such a gift to me. Your words, responding to mine, are another gift: sweet, soft, hard, unexpected. Brilliant. Together, we will make a gift that neither of us can make alone.

Only connect,” writes E.M. Forster in Howards End.  “Only connect the prose and the passion, and both will be exalted, and human love will be seen at its height.”

Caring for others can bring us closer to them and closer to each other, even in the raw hardships of illness and frailty.

“My father and mother-in-law died this winter within weeks of each other,” writes meditation teacher Kate Wheeler in her blog post, The Dying Season. “I have been imagining us as orphaned little kids holding hands by an open grave, trying to carve out a little piece of happiness for ourselves as we transit through this life.”

I’m in transit through this life, too.

I’m writing this book because I think that life is precious, rough, raw, and whole.

I’m writing this book because lately it has dawned on me that my pelvic-floor problem is getting worse, and surgery is in my future.

I’m writing this book because Elana Miller, the young doctor who wrote When in Doubt, Write the Truth, has a new post about her life with cancer called Loss. In this essay, Elana hits the ball of truth so hard that I’m still reeling from the blow.

Thank you for being there.

All the best,

Mary Ann

PS: Will you take the survey? Click on the REST Survey #1. Thanks! And Happy Mothers Day.

Notebook: Pilgrimage

The Sense of Taste by Philippe Mercier

The Sense of Taste, oil on canvas, 1744-1747, by Philippe Mercier, via Wikimedia Commons.

Editor’s note:

Today’s post is a letter from the notebook I’m keeping for my work in progress, Rest, which is a book of my poems, essays, and stories about finding rest and renewal in the midst of hard times. Emma and the client mentioned are characters in one of the stories. — MAB

March 11, 2014

Dear Emma,

I’ve found a bewitching group of 18th-century paintings for our chapter on taking in the good through the five senses. The artist, Philippe Mercier, was born in Berlin of French Huguenot ancestry but worked mainly in England.

I’ll tell you, the luminous surfaces and fabrics and fruits in The Sense of Taste appeal to me not just because I grew up with my mother’s European porcelain and silver on our table, but also because I spent nine years at the League of New Hampshire Craftsmen, fingering the silk chenille of a shawl at the Sunapee Fair or running my hand across a tiger-maple tabletop in the Wood Jury as the woodworkers scrutinized the joinery.

At the League, I learned how to stand next to an object, taking in the nuances of light, shadow, color, contour, line, and texture that develop within us, slowly, in the presence of art.

This book, Emma, is in many ways a journey of healing. Often, when I set out in my car for a new client’s house, I imagine myself going on a pilgrimage like the travelers in Chaucer’s Canterbury Tales. No matter what I find on today’s road, no matter how tired or sweaty or flustered or touched with grief or loss, at the end of the day I can wrap my weary shoulders in my shawl, or rest my eyes on some gem of the Italian Renaissance at my favorite museum online.

And on the pilgrimage, each day is a new destination. Perhaps, as sometimes happens, the circumstances are very dire, a client very alone in the middle of his last days.

I remember visiting, late one night, a man who had recently been diagnosed with pancreatic cancer. He had been living with his sister and her husband, but quarreled with them — he didn’t tell me why — and moved to a rented room in a rambling old house with odd flights of stairs and uncertain plumbing.

How he had escaped the grip of hospital discharge planners I never knew, but he’d come home to die and was determined to do it on his own. I spent a week with him while the authorities worked with his estranged family to get him some more help. Shouldering tubs of water back and forth between the bedroom and the bathroom. Carting laundry up and down to the basement washer and dryer. All of this in the heightened atmosphere of grave illness. It’s something like wartime, the epic battle between humans and disease, only instead of the cries of battle and the smell of blood, it’s the grunt of a patient hauling himself up on his side, and the faint breath of lavender incense against a background of cancer-related decomposition. He died on the weekend while I took my day off.

As I write this, a broad belt of sunlight streams over my right side, casting the moving shadow of my hand on the notebook page. I’m wearing my usual work uniform: heather-gray Perfect Fit cotton knit pants from LL Bean, a long-sleeved burgundy jersey from Talbot’s, my favorite mid-blue, rib-knit Bean sweater, and “Darn Tough” brand wool socks in a checkerboard pattern of rose, pink, green, and cream. It’s 55 degrees outside in this mid-March afternoon, and here in New England we’re all grasping for the promise of Spring like pilgrims on the exhausted edge of their last week before home.

Every day can be a pilgrimage, dear Emma. Every day.

Love,

Mary Ann

PS: For a beautiful essay on “Pilgrimage as Metaphor,” see this post by Jan Glennie Smith.

“When in Doubt, Write the Truth” by Elana Miller, MD

Elana Miller, MD, ZenPsychiatry.com

Elana Miller, MD. Photo courtesy of ZenPsychiatry.com

Editor’s note: Today I have something special for Joyous Paradox readers. Elana Miller, MD, the psychiatrist whose gutsy and eloquent posts I read at her Zen Psychiatry blog, has given me permission to share her remarkable essay about her experiences with cancer, “When in Doubt, Write the Truth.” Elana was diagnosed just before Christmas 2013 with stage IV acute lymphoblastic lymphoma. She wrote about the shock of her diagnosis in a widely read post, “Love Is… (Holy Shit, I Have Cancer).”  

“Hey there,” Elana writes in the About Me page of her blog. “My name is Elana and I’m a psychiatrist based out of Los Angeles, California. I write, I surf, I meditate, and I play ukulele. Here are a few of the things I believe in:

  • Not settling for being ‘not sick,’ but instead pursuing optimum mental wellness.
  • Discovering joy and happiness in everyday life, even amidst chaos and stress.
  • Synthesizing Eastern perspectives on mindfulness and spirituality into the Western view of the mind and brain.
  • Integrating traditional psychiatrist treatments with complementary approaches.”

Telling the truth is one way of finding joy, even in hard times. Read on, and see what you think. — MAB

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I wasn’t going to write a post today.

Usually by the time Tuesday rolls around, I’ve had a burst or two of inspiration and have at least an inking of an idea of what to say. But this week… nothing. Oh sure, there were a few ideas. They felt insincere, though, so I let them go.

This morning I told myself, why stress about this? People will understand if I take a week off from the blog. I figured I’d say, briefly, that I was feeling sick and not up to writing. Then, I’d come back to it next week.

It wasn’t until tonight that I realized what was really going on. The problem wasn’t a lack of things to write about. The problem was that the truth was painful, and I didn’t want to tell you.

But, how could I go wrong by telling you the truth? There is a purity in the truth, a vulnerability, a rawness. When you tell the truth, no one can tell you you’re wrong (or, you can safely ignore the few who try). When you tell the truth, you build a foundation. When you project an image, you build a house of cards.

Oh, and the truth is not an excuse to smugly hide behind while you say careless and insensitive things to others (“But I was just being honest”). That’s called being a douchebag.

Anyway. So, I decided, when in doubt, when I don’t know what to write about, I will tell you the truth.

I just ask you one thing in return. If you can, just stay present with me for this story. There is no need to reassure me, to tell me everything is going to be alright, that everything happens for a reason, that this all will be over soon, that I’ll be a better person for it. Do you really know if these things are true any more than I do?

(Oh, and for the love of god, please don’t tell me to “Be positive!”)

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The truth is that I’m in a lot of pain. By early evening my body aches from the weight of the day. If I’ve had chemo or a shot of Neupogen, it’s much worse. I feel sicker on the days I have chemo, even before the infusion, as if my body knows what’s coming and wants to tell me, “No, thanks!” The pain meds help, but not as much as they used to.

I thought switching from inpatient to outpatient chemo would be a breeze, but I was wrong. I thought the worst was behind me, but it’s not. As my body gets weaker, and less able to recover, the side effects get worse. I try not to think of how much treatment I have left (nine months…), but it’s hard to forget.

I didn’t have any nausea before, but I have it now. Even when I’m not nauseated, I have no desire for food. I’m losing weight, and even my cancer pants are getting loose. (Definition of cancer pants: the fashionable, smaller-sized pants one buys after losing weight from cancer treatments because one looks like a hobo in her regular-sized pants).

I’m lonely. It’s not so exciting anymore that I have cancer.I see people around me returning to their normal lives, and I don’t get to. I wonder if maybe I have to walk this path alone. If I didn’t feel so sick, and therefore emotionally hypersensitive, I probably wouldn’t care as much as I do.

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This hypersensitivity is both a blessing and a curse, because I can now read the subtle differences in how people say, for example, “Let me know if there’s anything you need!”

Because I need so much, I can read when a person means it, and will be there for me in any way that is humanly possible. I can read when the words are said out of obligation, or carelessness, or because a person would like to think they’re generous but isn’t really thinking about what they’re saying and will artful dodge my requests when I follow up. The latter hurts more—a lot more—than if nothing was said in the first place.

I’m tired, all of the time. I used to shoot out of bed early in the morning, even on the weekends, excited about all the things I would do that day. Now, I wake up around 11, and spent most of my time on the couch, watching mindless TV. When I have more energy, I play Sudoku on my phone.

Don’t get me wrong—I’m not bored. I imagine boredom as feeling as if you have nothing to do. I have the opposite problem. I have so much I’d like to do, but I can’t do any of it.

I’m not quite sure why I’m telling you all this, other than I want you to know, and want to remind myself, that there is no shame in being in pain. It doesn’t always need to be fixed. It doesn’t always need to be corrected.

I know that people often try to reassure others in pain for the most well-intentioned reasons. We see another person suffering and it breaks our heart. We want to reach out and make it better. We want to say the “perfect” thing.

If you find yourself in this situation, let me offer an alternative. First, connect with what you’re feeling. What is happening in your body? What emotions are rising up? What thoughts are passing through your mind? Maybe you hate to see them suffer, or your heart goes out them, or you care so much that it hurts.

First, connect with your inner experience. Then, say something true.

When in doubt, speak the truth. When in doubt, write the truth.

— Elana Miller, MD

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Related Post: Staying Mindful While Facing Cancer: A Worksheet from Mindful Hub

You can read more posts by Elana Miller at her blog, Zen Psychiatry.