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.

About Ellen

I am a member of The Writers Union of Canada, the League of Canadian Poets, and CANSCAIP. I have received grants from the Ontario Arts Council for both writing and teaching. I currently work with Learning Through the Arts and Living through the Arts, programmes run by the Royal Conservatory of Music that enable artists to work in schools and community organizations. I have also taught in many other school and community programs, and have been a judge for various writing contests for both young people and adults.
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