Written On the Body. June 5, 2019. “We’re All Improvising…”

I have started the second round of chemo, with a new drug added (I won’t go into all the medical details here), which has stronger side-effects and hit me harder than last time. However, I am learning to cope with this, with rest, drinking liquids, eating small meals, walks, reading, visits with friends, and sun on the balcony. (well, we keep hoping!) My weekly relaxation and yoga classes at Wellspring Cancer Centre (the branch on Charles Street, downtown Toronto) are also very helpful and give me some structure and the company of people going through similar situations. I am slowly getting used to this new normal, of treatments, side-effects, and reactions — all uncertain, because this normal could easily shift into a newer, different one. The fatigue from the chemo is the most ongoing effect, and probably means the medication is working. I feel I am moving in slow motion, in a kind of universal present in which I am also feeling a kind of ennui or apathy — and then the curtain lifts for a while and there is enough energy to complete a task — writing this blog, or making a sandwich.

And this leads into what I really want to mention today: a performance I saw on Friday night by Toronto’s Choir Project. Six members of the choir, including a writing student of mine, worked for 10 weeks with Tracy Erin Smith of SOULO Theatre to create a story about each of their lives, accompanied by the choir singing pop music relevant to each dramatic monologue. This gripping performance, at Toronto’s First Unitarian Congregation on May 31 and June 1, showed each person not only facing and struggling with difficulties in their lives, but also finding courage and resilience, learning how to live with, love, and express the self that feels most true and real, despite inner and outer messages to the contrary. At one point in her deeply-felt monologue, my student (also a friend) mentioned taking an Improvisation course (Improv for Anxiety) and said that we are all improvising together, on one stage, finding ways to connect and live our lives. That rings true. We keep improvising, writing and rewriting our scripts, or throwing them away and listening to the other characters’ lines, and to what we really want to say in return. My heart was touched by this thought about improvising, as well as by all six soul-stories. In most improv exercises, there are no “but’s,” only “and’s.” This happens, and this happens. We keep on.

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Written On the Body #4 — May 27, 2019

I wake on a sunny morning in late May. I finished the first round of chemo last Sunday (May 19) and have enjoyed a week with more energy — though still with a few waves of fatigue. I feel very lucky I didn’t have the side effects of nausea and other physical unpleasantness that I had feared. Taking pills is much easier than going in for IV treatments, but it was still nice not to worry about the precise timing of meals and pill-taking. I see the oncologist tomorrow, and a new round of chemo will probably start on Thursday — not sure if this will be the IV of herceptin and the pills again, or if another drug will be added.

The week was enlivened and brightened by 2 visits. Roger’s daughter Terri came from Seattle to Toronto for work and also to stay and visit with us for a few days. Her warmth, intelligence and presence are like fresh spring air, and it is always good to see her. Then my friends Judy and Marji, whom I have known since college — over 50 years now — came for the weekend from Washington D.C. to see me. They stayed in a hotel, and we were able to have nice meals together (including dinner with Roger at a neighbourhood restaurant), a morning-coffee visit to our home, and a lovely afternoon at the AGO, discovering art both familiar and new. They are friends with whom I feel like family, we have shared so much memory and history, and are still connected in the present. This is where email, I think, is helpful in keeping people in touch with each other, even at a geographic distance. Then the warmth of a personal visit enhances the connection, and also helps keep me in touch with the various parts of my life and myself.

The iris have started blooming in our garden. And the Raptor won 4 games in a row, won the Eastern NBA conference, and are moving on to the finals. Life is still good (even if I feel I am moving in slow motion at times.). To be continued…

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Written on the Body #3 — May 17, 2019

My mother’s birthday today — she would have been 101. She died 10 years ago, at 91 — in her 90s like her mother, her grandmother, and her great-grandfather. I always thought I would reach my 90s, too — clear-minded as my relatives were. Now — ??? but my mother was convinced she would die at 50 (until her birthdays moved beyond that), so who ever knows?

Getting to the end of the first round of chemo. I have a CT scan today to monitor progress and provide a new “base line.” As Patti Smith writes in “M Train,” a writer is a “visualization detective…. who sees not only blood but the spattering of words”… and tries to find a pattern, find some meaning there. So writing here is helping make sense of this strange experience.. or at least note the spatter of impressions in words.

I am thinking today of the ritual involved in treatment: First, there is simply washing my hands before and after the pills, taking them at approximately the same time of day, after eating, then taking other meds to ward off side-effects. Then, for procedures like CT scans and radiation, there is the journey to the hospital, undressing (at least partially), lying on a table, staying still in a prescribed manner, the actions of the technicians as they check the equipment, ask me for my birthday and my address (the answers never change, but the questions have to be asked), then start the precision timing of the procedure itself. And there are small, voluntary rituals — sitting in the hospital quiet area, with its stained class and mural of a water lily, for a few moments after a clinic visit or procedure, just to give thanks for still being here and alive, and for the beauty of the day. Greeting my flowers in the garden (as I have always done). Writing poems. Writing this blog. Coffee in the morning, hot baths, walks around the neighbourhood, and a late-night comedy show, just to make the news of the day (not my own news) seem less dire — even as the comedians are becoming more like “real-news” commentators, giving us perspective on the spattering.

Have a safe and springlike weekend!

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“Written on the Body” — May 1, 2019 (Mayday)

I am using the title of Jeannette Winterson’s wonderful novel to start a new series of blog posts, with updates on my medical situation. (how easily I try to avoid using the word cancer, the “c-word” as people said in my childhood — not referring to a woman’s sexuality.) May 1, Mayday — from M’Aidez, help me — is a good day to begin. I want to express my gratitude for the help you are all giving me, by being there and wishing me well.

I appreciate all my family and friends’ good wishes for my treatment, recovery, and health. And while I am glad to continue e-mailing and talking with you individually, I think the time has come to create a place where I can give general updates, information, and thoughts, open to all of you. This is 3 months after my diagnosis in early February, after an apparently successful radiation therapy treatment in March, and just before chemotherapy starts on May 6. I am sure that during the time of chemo, I will have less energy and (paradoxically) feel more ill than I have felt these past 3 months, less able to respond quickly to messages — and so a place you can “check in” for news when you are interested in a good idea, I think. I will try to write an update every weekend – even a few lines. I am NOT putting any of this on facebook, as I still want to maintain some privacy and create a “circle of intimacy” rather than spread the word to everyone I know on fb and their friends and friends of friends and second-friends-once-removed. I’d appreciate your respect for this.

So — esophageal cancer (with metases to the liver!) The last thing I expected, especially soon after moving to Toronto to live with my partner. It is also surprising — in a wonderfully different way — to find a deep and loving intimacy at the age of over 70 (though we have known each other since age 55). Living together has made the relationship grow in many new dimensions: caring, companionship, conversation, and yes, sexuality and love-making. “Written on the Body” applies here, too. I feel as if my body is experiencing a huge amount of new feelings, sensations, and activities, and they are in a strange conjunction with each other: the loving and the cancer — both growing — though we hope the treatment will diminish the cancer cells, while the love flourishes. Love and a sense of humour are not among the side-effect “casualities” that the chemo manual lists.

At the moment, I am surprising and pleasing the doctors (and myself) by being able to eat anything; all systems are working. I am also walking around (waiting for warmer spring weather), writing, going to a few activities like readings — though I have cut down quite a bit, as I get tired after a short time. We did have a great trip to Halifax in early April, to see family there, and have been enjoying family visits in Toronto as well. I am trying to live fully in the moment (which may account for forgetting things in the past and future!)

The first round of chemo will involve one injection every three weeks, as well as pills I take at home for 2 weeks, then a week off. lIn the second or third round, they may add another drug which involves more frequent hospital visits for injections. n on May 17.

Finally, it is very strange to know there are things going on inside my body that I can’t feel or know about through my senses. I have been writing about the “unceertainty princiople” (Heisenberg) and the idea that the universe is made up of everything we know — and everything else. (Schrodinger). This is certainly proof of these theories.

That’s all for now. Thanks again for your warm support, Ellen

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Written On the Body, 2. May 10, 2019

So this is the 5th day of chemotherapy treatment. This first round is (so far) “chemo-lite”: I had one IV injection at the hospital on Monday, and started a regimen of taking another medication in pill form for 14 days — so I can stay home in my bathrobe, if I want to, and still be on treatment. The one major side effect is fatigue — and being home means i can nap when I feel like it. And the gray rainy days are conducive to that, and to reading. On the other hand, the doctors and friends who have been through this encourage me to walk and get light exercise, and I do feel better when I walk. I had a good walk on Wednesday, when it was sunny, although cool and windy. I am still eating well, which is important. Thanks to various friends for tips about mouthwash, hand-cream, diet, etc. Around our co-op, the trees are finally coming into leaf, and daffodils and tulips are emerging into colour. I planted pansies and a bleeding-heart in our small garden, and I think they have taken root.

Reading, as I noted, is important, and I am drawn both to mysteries and science-fiction and to journals and biographies about women artists and writers. Here are some recommendations in the second category. 1. I am re-reading the three journals by Anne Truitt, U.S. sculptor (1921-2004): Daybook, Turn, and Prospect. I first discovered Daybook in the late 1980s, when I was about 42, and wrote Ms. Truitt a “fan” letter to which she responded with words that gave me hope and encouragement: something to the effect that “a woman’s creativity is most powerful from her 40s to her 60s, if she can ride the crest of that wave.” She writes about her art, her family (children and grand-children), about being a woman and woman-artist, and thoughts about the wider world — even to the Antarctic explorers who fascinate her — and who also talk about the “waves” they encounter. Prospect explores aging, which is more relevant to me now than when I read it a decade or more ago. 2. Middlemarch and Me, by Rebecca Mead: a study of George Eliot’s life and work, and also Ms. Mead’s relationship to this novel. She travelled to various places Eliot (born Mary Ann Evans) lived, and also writes about her long relationship with George Henry Lewes (I knew about this, but learned much more from the book). I have loved George Eliot’s work since university classes taught by the wonderful Naomi J. Diamond, so this book — discovered at the local library — was a real “find.” 3. Another library discovery is Jane and Dorothy, by Marian Veevers, a study of Jane Austen and Dorothy Wordsworth and how both these women dealt with lives of “genteel” poverty, their own writing, family restrictions and dependencies (and how they tried to free themselves from this), and being unmarried at a time when marriage was considered the sole purpose of a woman’s life. The book has interesting insights on the Georgian period and its views of women — but omits discussion of one reason neither Jane nor Dorothy ever married: their (perhaps unconscious) sexual/romantic attraction to women, not men. Jane was “in love” with a man at 20, which ended abruptly, then rejected a few proposals later in life; Dorothy was devoted, perhaps excessively, to her brother William, with whom she lived for much of her adult life (even after his marriage, to her good friend) — but the question certainly arises in my mind. One wonders what their lives would have been like today. It is interesting that George Eliot, about 40-50 years later, formed a deep and satisfying relationship (as companions and lovers) without the sanctity of official marriage, a relationship which nurtured her own writing (rather than interfering with it).

That’s all the medical and other news for today. Have a good weekend, and happy Mother’s Day. We’ve all had mothers (and grandmothers), even if not mothers ourselves. I celebrated Mother’s Day last Sunday when my son was visiting, back in Ontario on vacation from his work in Cape Dorset, Nunavut. It was good to see him.

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In the City

In my last post, about the changes in my life since moving, I forgot to mention the benefits and atmosphere of living in downtown Toronto — in the Regents’ Park neighbourhood, which is undergoing a resurgence — new housing, which still has subsidies for some residents; new stores; a beautiful modern aqauatic centre; a bank and supermarket (not there before, further marginalizing an already neglected area); the Daniels Centre, with theatres and meeting rooms, primarily a place for companies like the Native Earth Theatre and COBA (Collective of Black Artists). We are right near streetcars going east and west, providing easy and quick access to the subway as well as places on the streetcar lines; we are within walking distance of both Parliament Street and Broadview Avenue. Excellent medical facilities are within easy reach — clinics, family docotors, and major hospitals. Most important, however, is the mix of people — multi-cultural, in many different economic strata. Even in our co-op, there is a huge range of people — yet there is a sense of equality, a level playing field. I love going to the bank and the picture-framing shop, both on Broadview Avenue and Gerrard, and talking about Chinese New Year with the bank’s young financial advisor and the very talented young woman who frames our pictures, both of whom are of Chinese heritage and enjoy talking about that. I like being not in a “white majority” as I walk around the neighbourhood or ride the streetcar. I like the kindness of the streetcar drivers, toward me and other customers (e.g. pulling up to an accessible stopping-area on a snowy, icy day, or helping women with strollers get off and on.) I like walking through the co-op courtyard and greeting people, being greeted. I like going to pottery classes, with another co-op member (age 81!) at 220 Oak Street, a Toronto Housing building that has had many problems in the past and is getting some help from various agencies, including COTA. The pottery and art class, called the Acorn Arts Project, is run by three artists; their group has just received a Community Champions Award from CBC, one of five winners of this new award to recognize people helping the Toronto community.

This all takes me back in some ways to growing up in New York City, especially the neighbourhood on Central Park West and 96th Street where my parents and I lived until I was nine years old. Then my parents moved to a “nicer,” more upscale neighbourhood on the east-side, because “the neighbourhood was changing.” Now I have moved “back” to a similar neighbourhood, in a different country. Yes, I have seen and heard about some violence in the area, and there are still problems to be worked on — but this is outweighed by the sense of community, and the willingness to find solutions: hope rather than despair, in Jack Layton’s words.

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Moving Into a New Year (or, Moving, 5 months later…)

I haven’t written here for a while, as the autumn was a flurry of settling in to a new life, plus time for relaxing and breathing deeply. I ended the last post talking about “courage of the heart,” and this definitely has been a time to feel that. It has been a time of deepening the relationship. (I was surprised and pleased to see that George Eliot, aka Marian Evans, used this very word, “deepening,” to talk about her relationship with George Henry Lewes when they began living together in the 1850’s — cited in Rebecca Mead’s excellent book, My Life in Middlemarch, published in 2015.). We have been learning to work out the details of life: cooking together — which is fun, creative, and nourishing — as well as making the bed and taking out the garbage, doing home repairs, coordinating schedules, listening to music, enjoying time together in ongoing conversation or companionable silence, and time for each of to “do our own thing.” In my case, I have felt my writing take on new directions. And, for both of us, the change from a from a commuting relationship to living together has deepened, heightened, and grounded our intimacy. We have also been learning more about each other’s lives, from childhood on, and dealing with a few health challenges — our own and those of friends around us. And, I am getting to know more people in the Oak Street co-op, where I am now a member, and spending time, especially over the holidays, with each other’s family and friends, extending and our circle of closeness. Now, as the new year begins and light returns — there is time to reflect. Light and darkness — and returning light.

There is also the awareness of aging. I began these thoughts on moving, several months ago, with a comparison of moving and childbirth, and now again I am reminded of how time slowed and expanded during the first months of my son’s life, when he and I spend much time alone together. Living with a loved partner at this time of life, our 70’s, time as also slowed down — fewer obligations, and often less energy — but an awareness of the joy and meaning of each moment.

May the year unfold well….

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Moving Part 6 — Arrrival!

So — where to start? It is definitely a new beginning — and an ending, and also an ongoing middle to this story. A new chapter. I arrived at the townhouse at Oak Street Co-op, on Cornwall St, Toronto, at about 7:00 p.m, on Friday August 31, after a final packing up during the day, greeting the new owner (unexpectedly) and showing him around; saying goodbye to my neighbour, who dug up some iris (for herself, for me, for another couple of neighbours), and took the last batch of donations.
And now, it is a matter of settling in here — less pressure, no deadlines — and after several days (it is now Tuesday, the day after Labour Day), I feel the transition is going smoothly. The Jewish month of Elul is usually devoted to cleaning and clearing and turning before the start of the New Year, on the first day of Tishri, and this certainly has been one of those times, emotionally and physically, and spiritually, too. One of Roger’s and my projects over the weekend (in addition to unpacking some boxes) was to work on our balcony and outdoor garden, separating the palm tree into several pots, replanting the basil, planting the new iris. We also cooked together, as we like to do. I am aware of changes, the pattern of life left in Hamilton, but even more of the new pattern and rhythms of life here, and the way we are both experiencing this change in our relationship, as well as in our living spacetime. This move is giving me “courage of the heart,” a wonderful phrase/motto from the Netflix show “Sense8,” about empathy, caring, community, and working together.
To be continued…

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Moving, Part 5

August 31 — D-day, or M(oving)-day. I spent the night at the Visitors’ Inn in Hamilton, after camping out on sleeping bags in my (almost) empty house for 3 night — the couch went to a refugee family on Monday, the bed and pullout couch are long gone to other people. I had a massage yesterday, and that helped my back — couldn’t go back to the floor and sleeping bags, and also a transitional night in a hotel — clean sheets, real bed, food cooked for me — was a good step in leaving 51 Chatham.. Have to go back this morning to finish cleaning the fridge, get some plants and odds and ends. Then to see the lawyer. A sense of panic — leaving the known — but the new worlds and seas beckon, and I know I won’t fall off the edge — and I am also going to another, partly-known world that needs to be further explored and enjoyed and lived. No monsters, even if there are surprises.
Thinking back to 18 years ago when I moved to Hamilton — and back before that to the early and mid 90s, when I began getting to know people here. Also remembering my mother’s death on Aug. 31, 2009. I wish I could tell her about this move — but maybe, in a way, she knows.
Also breakfast at the Visitors Inn reminded me of breakfast here with Sharon and Peter, at the Jewish Literary Festival in 2009. Good memories. Life is full of these. As Roger mentioned yesterday, he was listening to the top 100 hits of 1969, so many songs laced with memories. Reminiscing with my friend yesterday about how we met through a casual conversation at Ladies Swiim at the Y, in 2000. And with another friend about her parents’ stories about coming to Canada as survivors after World War II. So on to new experiences, making more memories and more stories.

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Moving – part 4

Last several days in Hamilton. There is a warm breeze blowing in the garden, and predictions of very hot weather — feeling over 40C today. The big move was done last Tuesday, in the pouring rain — though it cleared up for most of the loading, and almost the whole drive in and the unloading. The flowers are beginning to face and look weathered, that end-of-summer attitude. The bees and butterflies — monarchs, and dark blue-black ones — are still eagerly fluttering and suck up nectar. The house is almost empty — though I am still finding nests of papers, yet more recycling, more shredding, more discard. I feel badly that I let so much clutter pile up — even worthwhile things (magazines, manuscripts, etc.) that could have been cleaned out much sooner. (My son: “We’ve been telling you to do this for years.” For an earlier move, years ago, he marked cartons Books, More Books, Too Many Books.)
Unpacking at Roger’s is going smoothly too — finding places for what we want, starting a “for a good home” box for the extras.
I sat in my garden yesterday, looking at the trees I planted — the ornamental cherry, the lilac, the weeping redbud — and thought of my friend Sharon Nelson in Montreal seeing a photo of the weeping redbud and saying “She is beautiful.” She — the tree with its delicate pink/mauve flowers, is definitely a she. I was glad Sharon could see the tree before she died in 2016. Sharon also loved gardens. (I had recently cut down two elderly cedars, and needed a new and beautiful tree to fill an empty space). I would like to talk to Sharon about this move, the changes in our lives and in the world. I read a poem I had written for Sharon at a memorial service on Sunday (Aug. 26) for another friend, Rita-Anne, a painter, poet, and a person of grace. Her love of nature also fills my world. The poem ends, “In the garden, new flowers appear daily. Deadhead the old blooms, allow new life to grow.”
New life, new light, changes, and growth. As summer ends, and — in Jewish culture, the new year, Rosh Hashanah, begins, with its wishes for health, happiness, and sweetness — along with saying farewell to the past, keeping the good memories, the feelings, the connections (it is just Hamilton to Toronto, commuting distance), and the stories.

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