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

“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.

A Story About My Hands

Editor’s note: Today I am re-posting my first article for Joyous Paradox in honor of the blog’s second birthday coming up in December 2013. I’m drinking my coffee out of a commercial mug rather than a hand carved porcelain cup, but my hands are still central to my work as a caregiver. The illustration, a World War II-era poster, is new. Thank you for reading; may you be well.  — MAB

If you were here this morning as I write the first entry in the Joyous Paradox blog, I would offer you tea or coffee. We would take our warm drinks in carved porcelain cups shaped by the hands of the maker, my potter friend Lisa Dolliver, and sit side-by-side on the living-room sofa, watching the words appear on the laptop computer screen.

Wash Your Hands Often, Poster by Seymour NydorfPerhaps the best place to start is for me to tell you a story about my hands. When I look down at them now I see how much broader and more muscular they are than they were the day I knocked on the door of a home-care client* as a newly-minted certified nursing assistant.

“I’m her nephew,” announced the tall man* who opened the door. “She just started a new round of chemo, so she’s going to be throwing up all day.”

“All right!” I said to myself. “It’s going to be a battle day!”

I dumped my bag behind the chair and pulled on my new disposable latex gloves, the ones we’d practiced putting on and taking off in the approved, sanitary manner during my course for nurses’ aides. We were supposed to wash our hands before putting on the gloves, but I figured I better be ready. I held the pink plastic emesis basin as my client retched into it and then helped her sink back onto her pillow. She looked up at me and our eyes met.

Later, emptying the emesis basin in my client’s bathroom, I remembered telling myself that I’d rather clean toilets for a living than work in a cubicle again. My previous occupation, despite its noble purpose, had not always been a good fit. On the other hand, this new role required a willingness to get way closer to the naked truths of ingestion, digestion, and waste elimination than most people I knew seemed willing to do.

Years of helping elders wash and tend their bodies or clothing or living spaces have roughened my hands and put calluses on my fingers. My nails are short and in winter my right thumb especially tends to develop little cracks in the skin. But as I would tell you if we were here together, I think that on balance getting close to the often messy realities of bodily experience has been good for me, as well as being essential for many of my clients.

Sometimes when I see a new client for the first time I make a point of cleaning their bathroom, not just for the sake of good hygiene and infection control, but also because I want them to know that I’m here to do anything they need, within the bounds, of course, of my strength and skill. This caregiving work has made me feel a little more comfortable with my own physical frailty and emotional vulnerability. To feel that comfort is to experience the paradox of human connection, wherein our deepest moments of shared fear, pain, and loss can bring healing — and even joy.

*Names and descriptions of clients and families have been changed to protect their privacy.

Image credit:  Wash Your Hands Often, poster, 1941-1945. By Seymour Nydorf, Office of War Information, via Wikimedia Commons. I found the poster available for sale at the New York Times Store by searching on Seymour Nydorf.