Written on the Body, #39: July 21, 2021, The Turquoise Raccoon Bandit (look on the bright side of life!)

The good news is that my new treatment has finally started. I have now had two IV infusions, July 8 and 15, with a third one on July 22. Then a week’s break, and the cycle starts again on August 5. So far the main side-effect has been fatigue (for a couple of days after the IV), which is cured by a long mid-day nap. I remember at three years old, in nursery school, I refused to nap on my cot, but grudgingly agreed to lying there, making up stories in my head. Now I think afternoon naps are a good thing — though I often take a book with me, to help me get settled. There is a possible side-effect of keratitis, an inflammation of the cornea (I don’t understand the connection), so I have to take a series of eye-drops and also wear a cooling eye-mask during the treatment — 20 minutes on, 20 off, for the 90-minute infusion — which makes me look like a turquoise raccoon, especially with my covid19 mask on. (No insult is intended to actual raccoons!). See below and feel free to laugh! It is a relief to be back in treatment, and I am glad these new types of drugs are available.

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Not really any bad news for me personally, just the ongoing larger grief about the Indigenous children buried on the sites of residential schools — and also grief for the children who survived these abuses. As I told some U.S. friends during a zoom call recently, I think all (or most) of Canada is now in a state of grief over this.

And concern for the wildfires burning in B.C., Oregon, Northern Ontario, the droughts in California, the floods in Germany, the destruction of the Amazon rain forest — all signs of the climate change emergency that is not just “coming,” but actually here.

So I have been thinking about why, on this blog, I also talk about world events, historical events, holidays, books and films, and other matters beyond the “cancer journey.” And a friend recently asked me about this, too. I think it is for the same reason that, when I facilitated writing groups for people with cancer and with mental-health challenges (well before my diagnosis), we wrote about many different subjects, including childhood memories; personal treasures; reflections on poems, paintings, photographs, music; topical subjects like space flight, etc. And the people I worked with were very glad about this, bringing in their specific issues (or not!) when it seemed relevant to them. This is because all our lives are rich and full with many things, past and present and hopes for the future, and these things bring a mixture of thoughts and emotions which writing helps us see and understand and weave together. Cancer, mental health, poverty, abuse are only one thread in a larger tapestry. As one woman in a group said, “I live with cancer all day, it’s nice to think and write about something else.” And the act of writing helps us (including myself) who are dealing with these serious, existential matters to broaden our gaze, remember who we are; what is beautiful, mysterious, interesting; what makes us whole.

This leads to a few observations as Toronto moves out of lockdown. Roger and I are still being careful, despite our two vaccinations, but I have twice had lunch alone at a restaurant patio — the Free Times Cafe on College Street, a place with good food, including some Jewish dishes (latkes, borscht, matzoh-ball soup), and the scene, in the past, of great music, including Klezmer, and poetry readings. I went because I had time to spare between appointments, but it was nice to just sit outside, eat, and relax, without feeling fearful, and then wander around, one day buying clothes at a small store near the restaurant (trying on clothes in an actual store, something I haven’t done for over a year!), and then, another time, discovering an amazing art installation in a window-gallery further west. I have missed this kind of random wandering, without an agenda, finding things that please my senses and my soul. So if you are near 402 College Street West, check out the Tower of the Sacred & Ordinary, by Daniel Toretsky, in the window-gallery — an exhibit sponsored by FENTSTER (which means “window” in Yiddish.) And we are making plans to visit my son and his family in Nanaimo, B.C. at the end of August — if covid, my own medical issues, and climate-change let this happen. The doctors have given their okay, so that’s a good start.

Stay well, stay safe, un-lock carefully!

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Written on the Body #38, June 28, 2021: Father’s Day, Summer Solstice, JuneTeenth, National Aboriginal People’s Day, and Pride

Much to commemorate this month. First, fathers, grandfathers, people who stepped into the role of father when needed. Memories of fathers in our past, alive or gone to spirit; relationships with fathers now; painful or loving memories; hopes for the future. I am thinking about my dad, who died in 1993 after nine years of living with the effects of severe strokes, taking away his language and mobility, though I know he continued to love me. I wish I’d had more chance to talk with him, adult to adult, and that he had gotten to know my son as a teenager and man: Joe was almost 5 when the first, major stroke hit, and 13 when his grandfather died. But I know Joe has warm memories of visiting him, and often would surprise me by saying, “Grandpa Harry would like that….”, whether it was a sports event or water striders on a pond. My father remains a touchstone of integrity in my mind and heart.

I am also thinking about other fathers: my grandfather Lou; Roger and his three children and his grandchildren — and his own father; my son Joe who has stepped into being dad to his partner Christina’s two sons, building loving relationships; Joe’s dad Allan, despite the differences we had as a couple.

The Summer Solstice: the longest day, the shortest night (of course, this is reversed for people in the Southern Hemisphere, where June 20 (or 21) is the winter solstice. Celebration of light, growth, renewal, flowering, fruits to come, and more light in our hearts and minds. As I wrote in a poem called “My Letter to the World” (after Emily Dickinson), published in the We’Moon calendar for 2021, “love is the force that greens and grows us all,”

In Canada, June 21 is also National Indigenous People’s Day, in the midst of Indigenous History Month. This year, especially, it is a time of soberness and grief, with the unmarked graves of 215 children at the residential school in Kamloops, B.C., and 751 more in Cowessess First Nation in Saskatchewan. There is much healing and reparative work to be done — and a sense of urgency about doing it. One good thing is that, this month, Canada passed bill C15 saying that  “the Government of Canada must take all measures necessary to ensure that the laws of Canada are consistent with the United Nations Declaration on the Rights of Indigenous Peoples, and must prepare and implement an action plan to achieve the objectives of the Declaration.” It acknowledges there has been systemic discrimination and injustice, and rejects as racist and unjust any doctrine or policy based on the superiority of one nationality, religion, or culture over others (the doctrine which served as the basis for colonialism and slavery). In the U.S., Juneteenth commemorates the day (June 19) that the last slaves were freed, in Galveston, Texas on June 19, 1865. It is another instance of a day to acknowledge the atrocities of the past — and how they still affect the present — as well as a day to celebrate freedom and work toward making it a reality in every aspect of life. And it has special meaning this year, I think, after the killing of George Floyd and the arrest, trial, and conviction of Derek Chauvin, and the .ongoing Black Lives Matter movement.

Finally, Pride month, in Canada, the U.S., and around the world, celebrates people who are gay, lesbian, bisexual, transexual, queer, +; at the same time, it takes into account all the injustice and violence that have been — and are still being committed — against people who are not heterosexual.

These holidays, whether just one day or a whole month, honour people’s lives and identities, their history and their presence in the present, but they also bear witness to the injustice and discrimination and hatred (both systemic and individual) against particular groups of people, singled out as somehow less than human. They are a reminder to all of us to recognize and fight against prejudice, in our own lives and in society, wherever it exists. As Emma Lazarus wrote: “Until we are all free, no one can be free.”

And now for the medical news: As I mentioned in the last blog, June 12, I had a test on June 14, a biopsy of the esophageal tumour, to see if I still have enough of the HER2 gene for the new drug to be effective. That went well; we are still waiting for the results, but I went on to have more tests last week based on the belief that the outcome will be favourable. These included another CT scan, an echocardiogram, an eye exam (as the drug can affect the eyes), and an MRI of my brain — all requirements of the clinical trial. The MRI was quite scary in anticipation (like many people, I felt panicked at the idea of being closed inside a machine), but thanks to friends who suggested visualization and breathing exercises, and a small dose of an anti-anxiety drug — and a nice technician — I felt no anxiety at all during the test itself; even the loud noises became background sounds without being invasive. So that was a relief. The CT scan showed slightly more growth in the tumour and also, unfortunately, in the liver lesions — so I am glad to be going back into treatment, starting July 8. This will be an IV infusion every week (with a break every 4th week), requiring a few hours at the hospital per session, so a bit more intensive than before, but there are good hopes for this treatment; as I’ve said, it is great that these new drugs are being developed. And I am still feeling well, able to eat, talk, walk around — and write. I will report how things are going after a few treatments. As always, your good wishes and thoughts mean a lot and are helpful in so many ways: thank you.

(and I realise my remarks about Pride, Juneteenth, and Indigenous People’s Day can only touch the surface of these problems, from the point of view of someone who does not know these situations first-hand.)

for hope, here’s a lily from my garden

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Written On the Body #37, June 12, 2021: Entropy…and Beyond

In simplified terms, entropy is a scientific concept describing the way things inevitably move from order to disorder; to break down, to become more random, uncertain, and chaotic. (This concept is used in physics and chemistry, biology, and more recently in fields like sociology and information theory). It reminds me of the lines by poet W.B. Yeats, “Things fall apart, the centre cannot hold…” The past year and a half has, in some ways, seemed a time like this, with the spreading effects of the pandemic, the exposure of systemic racism and social injustice, continuing climate change. This is true even though there have been, and still are, many creative efforts to deal with and overcome these problems. As Roger, who has studied several sciences, told me, “everything runs downhill — but there is a lot of downhill before the bottom.”

Over the past month, I felt that everything began running down for me personally…. though now order is starting to be restored. (In some new scientific research, order — e.g. crystal-formation — does seem to arise from entropy, too.) In addition to cancer and covid-19, and the social-political pandemics of hatred and bigotry, Roger and I were dealing with a slew of lesser (first world) problems: Our internet and cable tv kept breaking down, despite technicians coming to “fix” the problem — but now, for the past couple of weeks, they are working again. My cell phone, as I mentioned last time, also began going dead even when charged, and wouldn’t take a new charge — except, of course, when I took it in to be repaired; it would then work for a few days before going silent again. I have finally gotten a new phone that is working (though of course the old phone took a charge just as I was on the way to the store to get my new one; that did make it easier to transfer the data.) Even my desktop computer in my office stopped working, so I couldn’t use that familiar space for writing, with family photos around me and windows looking out on the trees. Finally, after some attempts at repair, I bought a new (small but good) desktop computer, and just installed it today — so I have my space back. Finally, the mysterious rash I had on my arms turned out to be bedbugs (which are having their own epidemic in our co-op), so we had to call the exterminator, and dry all our clothes in very high heat. Getting ready for the exterminator did motivate us to clean up the basement, the closets, and paper in my office — getting rid of old junk and paperwork that had been sitting there for years, in entropy of its own. These problems are now just about resolved

And the VERY good news is that Roger and I got our second vaccines on May 31, the day more supplies opened up. Although we’re not over 80, I could register because I am high-risk and the Shoppers’ where we went for the shots easily accepted Roger as my partner/caregiver.

But most anxiety-provoking aspect of the past month is that I have been feeling in a kind of treatment limbo re. the new drug treatment I have been hoping for — and that my doctors are trying to implement. So I’m glad to report more very good news:things are finally moving forward, and I have an appointment on June 14 for a test that I need, in order to see if I am eligible for the treatment. I mentioned several weeks ago that the doctor was hoping I could get into the clinical trial of one drug; it turns out that is not available, but there is another, very similar drug, and I am being screened for the clinical trial of that one.

Simplified biology lesson: Both drugs are antibody-drug conjugates; they carry an antibody for a specific gene in the cancer cell, which attaches to that gene and then releases another chemotherapy drug to kill the cells. (This is an area where a lot of research is being done.) In my case, it is a mutation of the gene HER2, which makes the cells grow out of control. (This gene is often associated with breast cancer, but can be found in tumours in other parts of the body.) I had a biopsy when first diagnosed that showed that my esophageal tumour was HER2 positive — but now, after a couple of years of treatment, they need to do another biopsy to see if there is still enough HER2 to make the drug effective. Unfortunately, the test to do that (an endoscopy) was delayed by covid19 complications. They considered doing a liver biopsy, as the disease had spread to the liver early on — but those lesions have now shrunk to almost nothing, because of the treatment. This is good, of course, but left me waiting for the endoscopy. So I am relieved it is finally scheduled, and I appreciate the doctors and the co-ordinator of the clinical trial working really hard to get this done as quickly as possible. I continue to feel well, eat well, have good energy and no pain — but CT scans show the esophageal tumour is getting bigger (only by a few centimetres, but not a good sign). So I need treatment. And I am so glad these new treatments are being developed, just as it’s good the covid19 vaccines have been developed so quickly.

Meanwhile, of course, terrible and tragic things are going on in the world. Finding the graves of 215 children at the Kamloops Indian Residential School, in British Columbia. The murder of 4 members of a n Islamic family, and the wounding of the fifth, a 9-year-old boy, as they were taking a pleasant evening walk in London, Ontario (murder by truck — the killer deliberately drove his vehicle into them as they stood on the sidewalk). How will this boy go on living? And the trauma of so many survivors of residential schools, and their families, has been evoked, again, by the discovery of these graves — with more to follow, I’m sure. In June 2008, I was doing a writing project at a school in Moose Factory, northern Ontario, sponsored by the Ontario Arts Council — by coincidence, the same week that then-Prime Minister Harper made his apology to the survivors of the Residential Schools and their families. I was with one of the teachers while she watched the speech on televison (alone in the school’s front office, while I stood behind a counter). I have always remembered that experience, and have now written about it, in the way that poetry can bear witness to terrible events. Maybe with grace, good will, and hard work, we can begin to move out of personal, cultural/generational, and world-wide entropies and disorder, toward a new and more life-enhancing creative order so we can all live well on this planet, in a climate not destroyed by the toxins of pollution and hatred.

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Written on the Body #36, May 9: Mother’s Day

Still on my cell phone for internet, and even the cell phone had to be revived 3 times this week. I finally took it to the Mobile-Klinik in the Eaton Centre, which seems to have done the trick, thanks to technician there. I worried about covid safety ‐- but Eaton Centre was almost deserted on a Saturday afternoon, either more security guards than people… like a post- Apocalypse movie. They only let in people like me, with an actual reason to be there.

I didn’t mention Mother’s Day in my last post, and want to take this time to honour all Mother’s…starting with Mother Earth and the connection between all living things, and the earth itself, including the waters and the air. Then all our mothers, whether still living or gone to spirit, annd all the mothering people in our lives, grandmothers, aunts, mothers by birth adoption, or marriage, teachers, friends. And all of us as daughters and sons, perhaps mothers ourselves and as caregivers and nurtures to ourselves and our loved ones and community. May you have good memories and good times in the present., even in the pandemic. May these people be, in writer Jane Rule’s words, a “speaking presence” in our lives.

Personal thanks to my mother Viola, my aunt Jackie, my grandmother Rose, great-grandmother Mary, great-great grandmother Esther (as far back as I have pictures). And to my father’s mother, Grandma Sarah. And to my son Joe, who has brought joy to my life, and his partner Christina. And Roger’s family, his parents, siblings, children. Family trees keep extending and interweaving, like roots of trees in the forest.

Below: 4 generations: my great-great-grandmother Esther (for whom I was named), sitting; my great-grandmother Mary, at the rear, then my grandmother Rose, and my mother Viola sitting on Esther’s lap. About 1920-21. My mother’s birthday is today, May 17 — she would have been 103. (She died in 2009, at age 91, happy to have made it to over 90). She loved lilacs and they are in bloom now!

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Written on the Body #35, May 5, 2021: May Day

This will be short, as I am writing on my phone because our regular internet is not working, along with the cable TV, on the same system. Thank goodness for my Samsung smart phone! (which also suddenly stopped working for a short while, then restarted). It’s good not to lose all communication with the world, but also nice to have the house a bit quieter.

May Day, the call for distress, comes from the French “m’aidez,” help me. And the world does need help right now, with covid-19 and its variants still ravaging, especially in India, Brazil, and marginalized communities all over the world. And the growing dangers of climate change caused by human behavior snd attitude, and the continuing work to achieve racial and social justice. Not to mention the personal tragedies many of us face.

But May also brings hope, renewal, spring flowers, and the possibility of healing on all levels, including greater communication and understanding. I agree with a quote I heard recently: the intention to heal oneself is also to heal the world.

On a personal medical note, my doctor is dealing with some bureaucratic delays in getting access to the new medication he wants me to have, but he thinks this will finally happen in a couple of weeks. Abd there is alternative drug he can use if the delay continues. He thinks I am doing well enough that another short wait won’t hurt. And he did write a note saying that I am eligible to get my second dose of vaccine sooner than four months after the first one — so I am trying to schedule that.

I did a wonderful Sound Bath meditation- listening to and absorbing a carefully-chosen collection of sounds – on line through Wellspring (Toronto), led by Rufus Glassco of Sound Body Collective. Rufus and I worked together in Learning Through the Arts some years ago, and it was great to see him again in this context. Sadly, two friends of mine have recently been diagnosed with forms of cancer; I have been trying to provide support for them the way people did for me when I was first diagnosed. It is good to have a hand to hold on this strange journey.

For leisure, Roger and I saw an excellent movie, Concrete Cowboy, on Netflix. Heartening without being sentimental. And I am reading Margaret Atwood’s striking new poetry collection, Dearly, and, as a contrast, “urban fantasy” novels by Patricia Briggs. I entered CV2 magazine’s 2-day poem contest, in which poets are given 10 words to use in a poem written over 48 hours, no more than 48 lines. Some words are common as mustard, others… well, have you ever heard of “nubivagant”? Can you guess what it means? Shall I leave you in suspense? (though you can find it online, of course). Here’s a hint: a famous line hy William Wordsworth. The contest is always a fun challenge.

Be well, and I will write again when there is more news.

.

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Written On the Body #34, April 4, 2021 — New Beginnings, and a Memorial

Easter Sunday today, Passover (Pesach) began on March 27 and ended April 3, and the Spring Equinox was March 20: all times of renewal, rebirth, and resilience, after tragedy, hard times, or just the cold bleakness of winter. The world has been going through its own plagues (the pandemic, racism and violence toward “the other,” killings of various kinds, damage to the climate: the land, air, and ocean). Let us hope we can leave the “narrow place” of fear, lies, despair, and hate and move toward a world where we can work and live together in harmony. (Egypt, which the Jews fled in the Exodus, is often referred to as the narrow place; it can be anything that enslaves or restricts us — including the harm we do to ourselves.). Even many quantum physicists, such as Carlo Rovelli, now believe that the world is made up not of separate entities but of relationships and context — echoing what some spiritual leaders, poets, and activists like Petra Kelly have been saying for years. (This is an over-simplification of Rovelli’s explanation — but it is the essence of it.)

On a sad note, April 4 is the anniversary of the killing of Dr. Martin Luther King Jr. in Memphis, 1968. I was living in New York at the time, and remember riding on a city bus and feeling the shock waves from this event in everyone around me. In an article about the assassination that Nat Hentoff wrote shortly afterward in the Village Voice, I learned about a writing group of and for young people in Fort Greene, Brooklyn (at the time, a slum area; it has since undergone “gentrification.”). “The Voice of the Children” was sponsored by the Teachers & Writers Collaborative, and led by Black poet June Jordan and white teacher Terri Bush. Terri’s husband, a doctor, had cared for the little girls killed and many other people injured in the bombing of the 16th Street Baptist Church in Birmingham, Alabama, on Sept. 15, 1963 — an attack widely known to have been planned and executed by members of the Ku Klux Klan. I was working for the left-wing , listener-supported radio station WBAI-FM at the time, and arranged for several members of the group, plus June and Terri, to give a reading on the radio. This led to my working as a volunteer with the group for about 3 years, going to the Saturday morning meetings in an old church in Fort Greene and, that first summer, spending two weeks with them at a camp in Toronto, Ohio (near Steubenville, not too far west of Pittsburgh, PA.) This was my first experience of being close to a group of Black and Hispanic people — we played, danced, ate, wrote, and bonded together. And we actually integrated the town swimming pool! The group put out a weekly newsletter, called “The Voice of the Children,” using the mimeograph machines that were the only way to do mass copying at the time. I remember how the kids were at first afraid of the trees, the insects, the silence — after the noise and commotion of their city neighbourhood — and then grew to enjoy it. I wonder where they are now? They would be in their 50s — if still alive. June Jordan sadly died of cancer in 2002, only 62.

This experience, in turn, led me to start teaching writing in schools and community groups, first in England, where I lived from 1972-79, and then in Canada, when I moved here in July 1979. The teaching, with grants from the Ontario Arts Council, the League of Canadian Poets, the Writers Union of Canada, and Learning/Living Through the Arts (as well as occasional funding from individual schools) began about 1990, and I have even managed to do a few zoom workshops during the pandemic. These workshops have taken me to inner cities, farmland, and the Indigenous communities of Six Nations and Moose Factory. I also did one session at the Miami Museum of Contemporary Art for their “Girls on the Rise!” program (for teenage mothers and other troubled girls). These experiences, with both young people and adults, have been incredibly meaningful for me; it is an honour to help people find their voices and the words to say what they need to say.

Back to the present, and to medical news. Roger and I got our first vaccines (Pfizer), on March 26. We both feel very relieved, though continuing to stay masked when outside our house and pretty much isolated, as the numbers of people with covid-19 (including variants) continues to rise in Ontario and other provinces.

I am on a short break from chemo, and will start another new drug in late April or early May. The news from the latest CT scan is mixed: further thickening of the esophagus tumour (picture a doughnut with the hole staying the same size, but the cake part getting bigger outward.) But the liver lesions (there since diagnosis) are stable or smaller and there is no further spread. Rather than put me back on the chemo pills I had been taking, the doctors want to try another drug, which will also target the genetics of the tumour — like the drug I have been on since June 2020 — but in a slightly different way. It is fortunate that there are several of these kinds of drugs being developed now, especially to deal with cancers with a HER2 positive gene, so there are more treatment options than even a few years ago. A few friends have told me about a recent New York Times article discussing a new, “game-changer” drug to treat esophageal cancer; I’m mentioning it here in case some of you have seen it. I looked up the drug described in the article and it is probably not appropriate for the type of esophageal cancer I have, because of the type of cells that became cancerous and because it targets different genes. That’s the science lesson — no test after reading!

A few notes about the “mechanics” of treatment, tests, etc. You get used to people observing, touching, and manipulating your body in ways that wouldn’t have seemed possible before — but now become ordinary and even helpful. I’m grateful that the technicians and nurses are all caring as well as professional. I sometimes think of T.S. Eliot’s line, “like a patient etherized upon a table,” though I am not usually etherized but awake and aware. It helps to take deep breaths, visualize a place in nature, or think of other (more hopeful) lines of poetry.

Also, I’ve pretty much given up driving. At first it was because of anxiety, then feeling that the effects of chemo would impede my judgement and reaction time, and now it just doesn’t seem necessary. There is plenty of public transportation where we live, as well as shops within walking distance, and during the pandemic I have been taking cabs to the hospital. We do have a car, and Roger drives on the few occasions we need to go to a place that requires driving. I may try driving in the neighbourhood as the weather gets better, but we shall see. And I’ve given up earrings and make-up, except for a bit of eye-shadow now and then (pandemic as well as cancer treatments). Though it seems insignificant (a “first world problem”) with all the serious problems of this time — and I am grateful to have kept my hair during chemo — I am now longing to get a haircut. I had an appointment in November, cancelled by the lockdown, and then one in late April, just cancelled for the same reason. So maybe the third time will be a charm. And I appreciate my hairdresser, Edwin, for hanging in during this difficult time — as well as all the small-business-owners who are doing their best to survive in business and to keep themselves and their customers well and safe.

Spring is here, the days are lighter and longer, the crocuses are blooming in our garden. So, as my friend Marjorie Baskin said, “life is still an adventure.”

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Written on the Body #33, March 8, 2021: International Women’s Day

A short comment on International Women’s Day: a time to celebrate our minds, spirits, emotions, and bodies; rejoice in our achievements (those that have earned fame, and the small achievements and successes of everyday life, love, and work); mourn those women who have suffered at the hands of men’s violence and patriarchal values (again, those whose names we know and those who are anonymous); to honour our foremothers and our children (daughters and sons); to praise our creative work in art, science, healing, politics, and more; and also to recognize the men who have gone/are in the process of going beyond patriarchal values to respect and support us, and the men in our circle of family and friends whom we love. (I think this last phrase needs to be said, though some people might not want to be so inclusive).

In particular, I want to honour my two foremothers who immigrated to North America from Eastern Europe, to create better lives for themselves and their families: My maternal great-grandmother, Mary Becker Axelrod, who (according to my mother) made the journey alone from Lithuania at age 14 to join her parents and brothers, first in Allentown, Pennsylvania, and then on the Lower East Side of New York City, and my paternal grandmother, Sarah R. Jaffe, who travelled from Russia (probably from Pinsky, near Minsk) with her 2-year-old daughter — my Aunt Betty — to escape a bad marriage or other situation, and then met my grandfather, Sam Jaffe (not the actor!) in New York. I knew both these women, in their later years — they each lived until 90 or so — and I am grateful to have inherited some of their courage and spirit. I wish I had asked them more about the stories of their lives. And also a shout-out to the late Ruth Bader Ginsberg, with whom I share a birthday, March 15. May all the memories of all the women who have graced our lives be a blessing.

“For women, then, poetry is not a luxury. It is a vital necessity of our existence. It forms the quality of the light within which we predicate our hopes and dreams toward survival and change, first made into language, then into idea, then into more tangible action.”Audre Lorde

Mary Becker Axelrod, above; Sarah R. Jaffe, below

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Written on the Body, #32, March 6, 2021: Some Uncertainty Resolved, Celebrating Black History, and Some Good Points for Uncertainty

To continue the medical news from the last blog, the doctors have decided NOT to do a second course of radiation at this time, basically because I am not sick enough. So this is good news. After a thorough review, the radiologist explained that it is less safe to do a second course of radiation than a first treatment, and they will never do a third course. So at this time, when I am asymptomatic (eating well, talking, no pain, no weight loss), and the tumour has only begun growing slightly, they want to hold radiation in reserve (in case things get worse) and continue with chemotherapy. It was a relief for me to have a decision, one way or another. I am still only on one chemo drug, an IV every 3 weeks; my oncologist may decide to put me back on chemo pills that I was taking at home for 2 weeks after each IV. The pills had some side-effects, but I can live with those if they help reduce the tumour.

Now, to more general issues. In my last blog, listing the holidays and events in February, I forgot to mention two very important ones: Black History Month in Canada, and the Lunar New Year, this year The Year of the Ox. I apologize for these omissions. Here is a quote from the Canadian government’s heritage website about the origins of Black History Month, a time for “celebrating resilience, innovation, and determination to work towards a more inclusive and diverse Canada—a Canada in which everyone has every opportunity to flourish.” This is especially important this year, as in both Canada and the U.S. we recognize the ongoing existence, and the dangers, of systemic racism.

In 1978, the Ontario Black History Society (OBHS) was established. Its founders, including Dr. Daniel G. Hill and Wilson O. Brooks, presented a petition to the City of Toronto to have February formally proclaimed as Black History Month. In 1979, the first-ever Canadian proclamation was issued by Toronto. The first Black History Month in Nova Scotia was observed in 1988 and later renamed African Heritage Month in 1996. In 1993, the OBHS successfully filed a petition in Ontario to proclaim February as Black History Month. Following that success, Rosemary Sadlier, president of the OBHS, introduced the idea of having Black History Month recognized across Canada to the Honourable Jean Augustine, the first Black Canadian woman elected to Parliament. In December 1995, the House of Commons officially recognized February as Black History Month in Canada following a motion introduced by Dr. Augustine. The House of Commons carried the motion unanimously. In February 2008, Senator Donald Oliver, the first Black man appointed to the Senate, introduced the Motion to Recognize Contributions of Black Canadians and February as Black History Month. It received unanimous approval and was adopted on March 4, 2008. The adoption of this motion completed Canada’s parliamentary position on Black History Month. (https://www.canada.ca/en/canadian-heritage/campaigns/black-history-month/about.html).

And here is a link to a poem written and read by a 13-year-old girl in Nova Scotia, Damini Awoyiga, whom I met online after hearing that she made masks to sell, and then discovered she is also a fine poet. https://www.cbc.ca/player/play/1850248771603

Recognizing the Lunar New Year also acknowledges and celebrates Canada’s Chinese population, who have also made great contributions to this country. The year of the ox, as I understand it, represents hard work and responsibility.

Finally, a brief word about the value of uncertainty. As humans, we tend to want certainty, though we know that the world is uncertain, in both large and small ways. Physicists tell us this: Heisenberg’s “uncertainty principle” says that we can know where something is OR how fast it is moving, but not both at once. And Erwin Schrodinger wrote that the universe is made up of everything we know — and everything else. Indigenous writer Richard Wagamese echoes this: “The truest statement in the world is ‘you never know.’ There is always something to evoke wonder, to wonder about, because this world, this life, this universe is more than the sum of its parts.” (Embers: One Ojibway’s Meditations, p. 99. Physicist Carlo Rovelli, who is also a student of poetry and the classics, tells us that being open to uncertainty allows us to be open to possibility, to innovation, to creativity; to build on the thoughts and ideas of those who have come before, but to criticize those ideas (without condemning them as evil) in ways that let our knowledge and understanding of the world grow and develop, and let us deal with new situations and information, without being tied to traditions and beliefs. (Carlo Rovelli, The First Scientist: Anaximander and His Legacy.). And Ralph Waldo Emerson wrote, “A foolish consistency is the hobgoblin of little minds.” Knowing this can be freeing, not frightening, and give us a more realistic sense of being in the world. Good things to keep in mind. And we can keep the certainty of closeness to the people in our lives (despite changing circumstances), the joys of nature and art, the steadiness of breathing in and out.

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Written on the Body #31, Feb. 17, 2021: Hope and Uncertainty

Hello. sorry it has been a while since I wrote. As a friend of mine once remarked, “things have been moving at the speed of darkness.”

February is a short month, but with many holidays. February 2 is “groundhog day,” when, according to the vagaries of the various rodents and their shadows, we know if we will have 6 more weeks of winter or an early spring. Given the cold weather and snow across Canada and all through the U.S., including Texas, it looks like we’re having more winter, at least for now.

However, there are signs of spring on the horizon — the afternoons stay light longer, and the Jewish holiday Tu Bishvat, the New Year of the Trees, celebrates the trees renewed growth. (The holiday falls on the 15th day of the Hebrew month Shevat, which this year fell on Jan. 27 -Jan. 28). Then Feb. 1-2 is the Gaelic holiday of Ibolc, also known as Brigid’s Day, which celebrates the beginning of spring (midway between the winter solstice and the spring equinox) and the birth of the season’s new lambs, and also budding of trees and plants. the goddess Brigid (Christianized to St. Bridget), who protected hearth and home. Fires and candles were lit to show the returning warmth and light, and water from holy wells was used to bless homes, land, and livestock. Some say the holiday also commemorates poetry — perhaps because poems also “spring up” and blossom from the poet’s imagination.

Then there is Valentine’s Day, Feb. 14, celebrating love, and Family Day (in Ontario) — a civic holiday honouring the family (so with links back to Imbolc!). In other provinces of Canada, the holiday has different names. And today, February 17, is the second “I Read Canadian Day,” celebrating Canadian writers and illustrators, especially those for children. So — even if you are reading this after Feb. 17, go find and read a Canadian book. There is plenty of time to do this, as most of us are sheltering at home from covid — and from winter.

My own treatment continues, and fortunately I am still feeling well, with good “quality of life,” as they say. Eating, talking, walking with no pain or discomfort, able to focus on reading, writing, and cooking — I made an angel food cake for Valentine’s Day, at Roger’s request (I hadn’t made one before, and it turned out both light and flavourful) and, earlier this winter, a yeast coffee cake similar to the one my mother used to make. Next project is pizza crust!

However (yes, there is a however), my CT scan in mid-January showed some “thickening,” or growth, of the original esophagus tumour, although there is no further spread of the cancer and the lesions in my liver are smaller — which is good. The options to treat this are another short course of radiation (I had some radiation when I was first diagnosed, which was helpful) or adding a secondary chemotherapy drug, probably the one that has been on hold for several months because of its side-effects. I would continue having some chemo in any case (though with a short break if I have radiation). The advantage of radiation is that it specifically targets the tumour, and new techniques have made it easier to hit the cancer cells and not the surrounding normal tissue. And yet, apparently, radiation a second time is trickier than the first. I saw the radiation oncologist on Feb. 17 and she scheduled a “planning CT scan” for Feb. 19 to see if, in fact, the radiation can be done safely at this time. We should know the results early next week. I had hoped to have a definite plan to report in this blog, but I also want to send the blog out now — and I will send an update when I know if I will have radiation or just continue with chemo. I feel that if the radiation is considered both safe and effective, it is a good plan — and I’ve talked with Roger, with my son Joe and other close family, who support this decision. There are no guarantees, of course, but so far the two years since diagnosis have been much better than I originally thought, and I feel in good hands with the doctors and staff at Princess Margaret Hospital.

When I trained in psychotherapy at the Tavistock Clinic in London, U.K., one of the principles we learned was that “you need walk in uncertainty” for a while, both with yourself and with your clients, and this has proved true for so much of life — including dealing with cancer and, for the world during the past year, dealing with covid-19 and its variants. As well as the ongoing striving for justice and overcoming system racism in our society, and the perils of climate change.

So in this season between winter and spring, darkness and light, let’s continue to see the light increase each day, in small increments, and enjoy the good moments each day brings. And even though zoom, email, phone, etc. are not a complete substitute for in-person connections, they are SO MUCH better than nothing — and a way to keep in touch during these changing times.

Reading Recommendations (Canadian and beyond): I’ve been re-reading Toni Morrison’s novels, which are wonderful. I’ve discovered a writer of tales for both adults and young adults, Charles DeLint (living in Ottawa) whose stories are fantasy grounded in reality (or vice-versa): a good one is The Wind in his Heart. And the Broken Earth trilogy by U.S. writer N.K. Jemisin is an amazing, complex story of destruction and salvation — her writing is brilliant. And two friends of mine, one Canadian and one in the U.S., have published good novels this year: Shaena Lambert (Vancouver)’s Petra, about German Green Party activist/feminist Petra Kelly, and Lisa Alther (Vermont & Tennessee)’s Swan Song, a kind of modern Odyssey — life, death, and pirates!

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Written on the Body, #30: January 18, 2021, The Winter of Discontent

Welcome to the New Year! Or is this just 2020 continued?

A friend who follows my blog asked why I hadn’t written a comment right after the insurrection attempt in Washington D.C. on January 6. Or were we all left speechless, she wondered.

I had been planning a blog about my anxieties re having cancer in the middle of a pandemic, and how the two anxieties were compounding each other — despite my attempts in this blog to stay positive, and my genuine feelings that life is still good, I am enjoying many things, and I am luckier than many cancer patients — and of course people who have covid-19 or are affected by it in worse ways than I am. But after Jan. 6, that didn’t seem immediately relevant.

But what could I say? The insurrection (not just a riot) was incited by Trump, despite his later denials, encouraged by the Senators and Representatives who continued to challenge the election results and promote the fallacy of a “stolen” election, and fuelled by so many angry, fearful, misguided people. And we kept understanding more implications of this event. Where were the police, who knew this “march” on the Capitol was happening? If it had been a Black Lives Matter protest, armed police would have had a major presence before the march started. And no Black Lives Matter or related protest has attacked a major institution, disrupting a legitimate democratic process and bringing weapons and symbols of hate and prejudice (the Confederate Flag, the Camp Auschwitz shirt). How did the people who broke into the Capitol know where to go — how to find Nancy Pelosi’s office, for example? I think it was right and appropriate to impeach Trump again for his seditious talk and actions; even though his administration is about to end, it is important to hold him accountable.

Though many people said they were surprised this happened in the U.S., I have not had any illusions that “it can’t happen here” (the U.S., or anywhere), and see this as the culmination of the four years of Trump’s Presidency — and the statements and actions he made during 2016 campaign. Just because someone is “elected,” doesn’t mean they won’t do great harm (and remember that Trump did not win the popular vote in 2016, but was elected through the archaic Electoral College.) I am looking forward to Jan. 20 and the inauguration of Joe Biden and Kamala Harris, and the terms of the two new Senators from Georgia, Raphael Warnock and Jon Ossof. Let’s hope that real, humane changes can start soon. to bring the U.S. (and the world) back to saner and safer place.

My friend Diane Ray, in Seattle, wrote a poem that was published online on Jan. 7: https://www.indolentbooks.com/transition-poems-in-the-afterglow-01-07-21-diane-ray/

I admired her being able to write a whole poem in such a short time, when I could hardly find any words at all. But then, this poem started to take form, which I will share here. More medical news and views soon. Happy Martin Luther King Day!

They Came to the Capitol

And what rough beast, its hour come round at last,   

Slouches towards Bethlehem to be born?  W.B. Years, “The Second Coming”

We saw the rough beast slouch, slither, and stomp

its way to the Capitol,

heeding its misanthropic master,

past-master of lies, deceit, arrogance,

and mocking cruelty. They bought

into marching orders that never should have been ordered,

broke windows and laws,

bones and the sense of decency and patriotism,

even as they paraded sham-patriotic signs

and slogans.   Did you see the Confederate flags

and the Auschwitz sweatshirt,

among the red-white-and-blue placards

waved by these ghost-white, sheet-white,rebels,

storming unmasked in the middle of a pandemic?

Their violence was also naked, unmasked,

urged on by their hero, encouraged

by other legislators (even those who now cry foul).

The leader who incited them to “glory”

now reads teleprompter words in a flat, lifeless voice,

urging calm, denouncing the “heinous” act, promising peaceful transition — 

after weeks of swearing how badly he’d been robbed.

But he ends his talk with animation: 

our incredible journey is only beginning.

No, his journey is ending — finished, past, kaput,

over and done with.

And so, I hope, is his followers’ —

may they see their folly before too late.

And may what slouches birthward in this city, this nation,

 be human, not monster,

liberty and justice for all 

 a reality for all of us, each one of us

in our own skin and heart,

 not another lie masquerading as the truth.

c. Ellen S. Jaffe, Jan. 2021

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