Written On the Body — August 24, 2019: “Both…And…”

Here we are, in the last half of August. The nights are turning cooler, sunset comes earlier, and there is a bit of “pre-autumn” feeling in the air, even on sunny days. I realised recently that I have passed the 6-month mark after my diagnosis…. and at first, I wasn’t sure I would be here in 6 months — let alone living a reasonably good and normal life: eating well, walking, not feeling pain, enjoying spending time with my partner, visiting friends, talking to my son, small-scale gardening, reading, writing, going to and giving poetry readings (though I have had to miss some of these readings and other events, due to fatigue.) So far, there has been no pain to deal with.

Of course, life has also changed in many ways: just being aware that there is cancer inside my body, and that its activity is internal and often beyond (or below) my awareness, has made life uncertain and led to some anxious thoughts. I am now in chemotherapy treatments, with an IV approximately every 3 weeks, that leads to several days of fatigue and some nausea. I am a week into my 5th round of chemo, and it is such a RELIEF when I begin to feel better after a treatment, and feel like myself again. I have to realise, mentally and physically, that I have less energy now and can do less — but I can still enjoy what I do (even if it is in lower-gear), and also enjoy the rest and relaxation I need.

In thinking about this situation, I am reminded of a workshop I took, years ago, with psychotherapist Yvonne Dolan. She told us about living with her grandmother when she was young; they lived near a lake and when Yvonne was quite young, she saw only the beauty of the water, the sky, the birds on the shore. Later, she saw oil tankers and pollution, and saw only the ugliness and danger. Her grandmother suggested she needed to see both sides — the beauty and the problems. That way, one could work on fixing the problems while not losing sight of the good things. A life-lesson that went beyond that particular body of water.

This does apply to me, now — and perhaps to many people faced with similar issues. Without sounding like “Pollyanna,” I am grateful for each day — being alive this moment, in the light and air, and held by a circle of people who love me. It is a liminal area — I could fall into despair, or I could deny my feelings of fear and anxiety and the “superstitious” thoughts that sometimes come (for example, a workshop in sound-healing that I wanted to take is full, and I first thought that was a bad omen — the disease would get worse!). It took thinking about this thought, and naming it to myself and to my partner Roger, that let this type of “magical thinking” lose its power.

It also is much easier and more relaxed to live in a world of “both…and…” rather than the binary thinking we are exposed to so much, in politics and ideology as well as everyday life. I have always tried to be inclusive in my life, not exclusive (us and them). This applies to one’s inner life of thoughts and emotions, as well as to dealing with the world outside.

Sometimes a situation is so bad, it is hard to see any good. And it can take courage to admit the problems in a situation that seems ideal. I think this can be true in larger, historical/cultural situations as well. Acts of kindness can happen, even in brutalizing situations; and people can create art — at the time and years, even generations later, that helps us empathize with those who have been hurt, displaced, imprisoned, or killed. And, perhaps, help us act in ways that prevent these oppressive situations in the future. No matter what, making art lets the artist express her thoughts and feelings through images, sounds, movement, and search for meaning in raw experience.

I will continue these thoughts in later posts. Enjoy the last week of August!

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Written on the Body — Goldilocks: August 1, 2019

Here it is, August 1 already. Sun is shining (here in Toronto), leaves are green and flowers thriving as we’ve had a lot of rain. I am on the next round of chemo, after a two-week break for R&R (from the side-effects!), and seem to be tolerating this well. Afternoon naps really help (naps are something I haven’t done since childhood — when I rebelled against nap-time in nursery school age 3.)

I have started the next cycle of chemotherapy, after a short break for R&R. The doctors have lowered the medication doses slightly. They are trying to find the “Goldilocks” dosage — the “just-right” balance between medical effectiveness and managing side-effects. Probably, as in most cases, this balance will shift, and I am glad they are looking at my personal situation.

It occurs to me, as I write this, that the Goldilocks concept of “just-right” — or, in many cases, “good-enough” (in the words of British psychotherapist and pediatrician D.W. Winnicott) — is helpful to think about, during this time of changes. I want to be aware of my body and symptoms, but not obsess about them. I notice that I am more concerned than usual about dishes being clean, food being fresh, etc. — things I can control, or believe I can. But I don’t want to get too anxious, too fussy. I am trying to find a balance between doing my “normal activities” and getting enough rest — and this is hard to predict, as my energy levels fluctuate from day to day. Sometimes, after a burst of energy, getting tasks done and enjoying visits with friends, I do have to listen to my body and get some rest. That is why my plans may change at the last minute: I do not want to avoid friends and activities, but sometimes postponing a visit is necessary to maintain the balance.

I think the reason the “Goldilocks” story endures is that we are all trying to find these balances in our lives. Scientists even talk about “Goldilocks planets,” with just the right conditions to support life. And we have memories from childhood, the “just-right” bed, the favourite meal, the perfect toy. We can feel this place of harmony when we are in it. Part of growing up is knowing that sometimes we have to make do with less than just-right, but as Winnicott wrote about parenting, it is important to health — physical, emotional, spiritual — to find what is “good enough” and nurturing enough most of the time. And to know we have the power to make the balancing-act work in our favour.

So I wish you an August of ice-cream, sunshine, relaxation– finding the Goldilocks sweet spot that is right for you, right now.

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Written On the Body: Good News, and Thought on Private and Public Information

This is the week between chemo treatments, though the side-effects are persisting a bit. I have, however, had good results from a CT scan — no new lesions in my liver, nor in any other part of my body, and those there are getting marginally smaller. This is a sign of hope. Even my doctor smiled broadly as he gave me the news. He’s actually given me a pause of another two weeks between treatments, so my body can rest and be ready for the next round.

So this leads into something I’ve been thinking about — how one’s body, both the visible, felt body and one’s internal organs, become much more public during a time of illness or injury and treatment. Privately, you become more aware of all your symptoms and nuances of feeling and sensation. Is this a side-effect? a new symptom? something completely different? And on the public side, various professional people ask you to monitor all kinds of bodily functions that normally you take for granted or notice only in passing; then they want you to share this information with them — information you normally would keep to yourself, or perhaps mention only to a spouse or partner. Then there are the blood tests, CT scans, and other tests that monitor the interior secrets of the body — things no one, including yourself, can know without these procedures. Things that would have seemed miraculous to people living in previous centuries, or even 50 years ago. Amazing that a test can show, for example, not only the interior of one’s liver and other organs, but measure the change in size of a lesion from 7 millimetres to 5, or define the exact genetic structure of a particular tumour, which helps determine the appropriate medications. “Body language” takes on a whole new meaning, a new vocabulary and grammar.

Friends, too, want to know at least some of these medical details, not in a professional way but interested in how you are doing. And you find, surprisingly, that it is okay to talk about. (Very different from the days of my childhood, when the “C-word” implied shame and secrecy, at least for my family and many others).

And then it is good to take a break, sit in the July sunshine watching the day lilies open their orange hearts, and be grateful for this day, the people in it, the ongoing life around us.

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Written on the Body — Summer Solstice

Here we are, just past the longest day, the Summer Solstice, as well as National Indigenous People’s Day (formerly National Aboriginal Day). So several reasons to celebrate. I am happy to be here, enjoying the summer (finally arriving in Toronto) and the flowers. I have started the third chemo cycle, so am a bit “under the medical weather,” but want to share a wonderful event that happened last Sunday, June 16. As some of you know, I have self-published a new poetry collection, The Day I Saw Willie Mays, and Other Poems, with the help of my dear friend and colleague Lil Blume, through our publishing company Pinking Shears Publications (our last book was Letters & Pictures from the Old Suitcase, to accompany our 2012 Canadian Jewish Literary Festival, held at Temple Ansche Sholom in Hamilton. The book probably will have to go into a second printing (!); please contact me if you are interested. Proceeds will go to cancer research.

I was getting ready to work on and finish this book-in-progress over the winter and early spring — helped by a Recommender Grant for Writers from the Ontario Arts Council (recommended by Guernica Editions — and then send the book to Guernica, who published my last collection, and, if necessary, other publishers. But the reading and publication takes two years and more and I wasn’t/still am not certain of the time I have left, and I wanted to see the poems in print. Also, between February and mid-March, I wrote a series of poems about my diagnosis and my responses to it, as well as some other new poems about my great-grandmother and ones inspired by photographs by Karin Rosenthal. Karin is a photographer I have known since university, and her pictures of bodies in water — where bodies become landscape, and also shape-shift into layers of reflection — have long been part of my life. Karin and I have talked about a poetry series for a while, and this seemed a good time to start.

Lil’s enthusiasm and support for the book got the project going and gave me confidence. She also made arrangements with the printer, delivered proofs and books to Toronto, and did a superlative job as editor. And she opened her home to a mini launch on June 16, at which I read some of the poems; this was also a great opportunity to visit with friends and colleagues I had not seen in a while. Despite Father’s Day and other activities that weekend, there were about 30 people present — thank you to everyone. I will donate the book sales to cancer research at Princess Margaret Hospital.

Below is a poem I did not read, but am thinking about, especially as I witness politics in the U.S., in Ontario, and in Canada as a whole. I remember the summer of 2011, when Jack Layton was dealing with his own cancer. Jack, we miss you. As you said in your last letter to Canadians, ” My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.”

FOR JACK LAYTON: State Funeral and Celebration, August 27, 2011

                        Dream no little dreams  (Indigenous prayer, spoken at the funeral)

The bagpipes play their strange sad lament – 

TV lets us see everything without being there:

Olivia Chow’s strained face, baby Beatrice,

the silent surging crowd.

This morning I cleaned my kitchen cupboards,

touched up the orange paint (Colorado Dawn) –

death does this, makes us clean, straighten, see, listen, and touch –

loved ones, flowers, household clutter.

Rise Up – Amazing Grace – Hallelujah

O Canada, how can we lose this man, who gave a voice to the voiceless,

home to the homeless, a song of hope to people in need –

not a saint, but a very human being.

I regret I did not know you, met you

only once – an NDP meeting – shook your hand,

saw your smile.  The political is personal,

the personal political – you knew this by heart.

Now you go from the ordinary world – bike paths,

jam sessions, elections – into the mystic…

Into The Mystic, where we can’t yet follow.

All our love goes with you – love is all 

we need to keep your dreams alive.

Poem by Ellen S. Jaffe,

First published in Jack Layton: Art and Action. Edited by Penn Kemp. Quattro Press, 2013. Republished in The Day I Saw Willie Mays, and Other Poems.  Ellen S. Jaffe, Pinking Shears Publications, 2019.

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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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