Cancer Gadfly: What’s God Got To Do With It?

I was mulling over Oliver Sacks’s mellow meditation on his terminal cancer diagnosis, when Jimmy Carter came out with his cancer story. (Curiously, both illnesses caused by melanoma.)
The one, a secular Jew from an Orthodox Jewish background, the other a born-again Christian, both look serenely on how cancer will―or may―end their lives. Carter, at 90, is explicit about his fearless attitude toward death: “I’m perfectly at ease with whatever comes. I do have a deep religious faith, which I’m very grateful for.”

Sacks, 82, equally at ease, references what religious feeling means to him by invoking his memories of the Sabbath, though not as a matter of belief.

I envy their serenity, notably Sacks’s by virtue of common ancestral roots, though as a woman with cancer but no nostalgia about the Jewish Sabbath, I can’t go there. Celebration of the day of rest ended with my grandparents, and I have put nothing in its place.

Cancer makes me mad, and God is no help at all.
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On the same page as the coverage of Jimmy Carter’s cancer diagnosis, a devastating article reports on the now debatable merits of mastectomy for women diagnosed with D.C.I.S. breast cancer. “It now appears that treatment [surgery] may make no difference in their outcomes.” Wow. The findings of the study are subject to debate, but treatment through surgery, now common, may well end up being rethought to dramatic conclusions.

I do not envy the women who have undergone the surgery, perhaps needlessly, it now appears. If I had, I’m not sure I could have waded through the waffling in the report without exploding with rage. But even minus the personal experience, there’s plenty of bad news about the disease and how it affects women for me to be riled about.

In The New York Times of Sunday August 23, 2015: I read the obituaries of three notable women, including the brilliant Svetlana Boym, whom I knew slightly, dead of cancer at 56. The other women, equally accomplished in their fields, also died of cancer at relatively young ages―young relative to me, at my ever-advancing age―and the ripe old ages of Sacks and Carter.

Too many women, some friends, some unmet, are dying of cancer. The attitude toward death from cancer (and other life-annihilating diseases) I admire has best been expressed by Simone de Beauvoir. It comes at the end of her memoir, A Very Easy Death, perhaps the first memoir to deal with witnessing the death of a loved one from cancer. Beauvoir writes after witnessing her mother’s death at almost 80:

Cancer, thrombosis, pneumonia: it is as violent and unforeseen as an engine stopping in the middle of the sky. All of us must die: but for each death is an accident and, even if we know it and consent to it, an unjustifiable violation.

I know it and I do not consent.

    “Where are you trying to go?” London, Summer Diary, 2015, continued

    I turn to see a tiny woman about my age, dressed like me, sporting large sunglasses and clunky sneakers. Since I am a short person to begin with, you have to imagine that this woman was positively elfin: Charlotte Brontë measurements. I startle easily, and must have looked alarmed, since she went on to ask: “Am I such a monster?” Not a monster, but still, remarkably small. “Of course, not.”

    Pelham_CrescentI was standing at the intersection of Pelham Street and Pelham Place, wondering whether I dare turn into Pelham Place on the chance that it might turn out to be a short cut to the Kings Road. I had walked from South Kensington to Chelsea several times in the past, but I have walked in London enough times to know that a shortcut usually means a good way for me to get lost. Getting lost is something I do on a regular basis, even with a map, even more often with a map. That day, I was already lost in thought.

    “I’ll show you,” the woman said, leading me into Pelham Place, when I told her my destination, “it’s a short cut.” It was as though a human GPS had just emerged full blown from the fog of my anxiety.

    I was pleased to learn that my Pelham Place hunch was correct, though as we wove our way through a neighborhood I had never seen, I realized that minus my self-appointed cicerone the short cut would have led me away from my destination, rather than to it. My guide masterfully steered me across heavily trafficked streets―she would just put her tiny hand up with the authority of a traffic cop, a gesture that stopped cars from advancing any further in our direction―and hurried us along.

    “I’m good at instructions,” my companion explained, “because I’m a teacher.” She taught languages, she said, another commonality. “I used to teach French,” I said. “Ooh, la, la,” the guide exclaimed (that seemed a false note, but then clichés about the French die hard). I can’t quite retrieve the thread of conversation that led to and then from languages to Dreiser―an argument about whether Dreiser’s novels showed social violence, “not really,” she demurred, compared to Zola (she pronounced Zola as the English do, putting the accent on the first syllable, so French was not one of her languages, unless maybe that was an English affectation), and then we suddenly entered the zone of gorgeous Georgian townhouses in Pelham Crescent. “You see,” she said, slowing down, “the buildings are white and the doors are black.” She liked, she said, to imagine the inhabitants exiting from their elegant houses, headed for a ball.

    As we approached the place my guide had chosen for our parting–“you’ll be fine if you just carry on from here”–she suddenly said, without looking at me: “You know, in the end, all of us are alone.” “Yes, I know,” I replied, as somberly, wondering what had triggered her existential pronouncement. Did I look that lonely?

    And then I was, alone.
    When I was young in London, or any foreign city, the encounters that mattered to me were always with men: romance! But now, I appeal to old ladies like me who worry whether I know where I’m going.

      FRIENDSHEEP: A Summer Romance

      Sometimes you just have to give in, admitting, say, you’re just a dumb tourist and buy the tchotchkes on offer. This summer I traveled in Wales with my much younger and ridiculously fit friends Victoria and Jay. We were “walking,” as we did last summer in Yorkshire (think rocks and stiles, also sheep), and as usual I brought up the rear, including mortifyingly falling on it. But off the trail, we returned to a more civilized horizontal.

      Jay, I should say, is unembarrassed by kitsch, especially if it is animal related. (Remember his “How to Raise a Jewish Dog” post.) I am strenuously resistant to animal cuteness―in life or image―but when after a tea break Jay showed me his latest find, I surprised both of us by saying I had to have one of my own. The keychain had my name on it, as it were. (I did not buy the recycled sheep-pooh paper, however. There are limits.)

      What could sum up our Welsh adventure better than this miniature, laminated tribute to “friendsheep”? The only mimetic flaw here being the two creatures, rather than the trio we hilariously made up.

      photo-2I’ve been wrestling with my friendship project for a while now, not least on this site, especially since it has a slightly mournful quality (the dead friends part). The keychain reminds me that silliness is key (as it were) to the friendships that matter most to me―an anti-memento mori.

      Miles away from Wales and sheep, I can’t help smiling every time I lock and unlock my door.

        For Patricia Yaeger

        “I wanted to fill my elegy with light of all kinds. But death makes us stingy. There is nothing more to be expended on that, we think, he’s dead. Love cannot alter it. Words cannot add to it. No matter how I try…it remains a plain, odd history.” So writes Anne Carson at the beginning of Nox, as she creates an epitaph on paper for her brother. Elegy and eulogy do not share a root but they share the difficult task of remembering what is lost, as I do here for my friend Patsy. You can read it here: For Patricia Yaeger: A Modified Eulogy (pdf) (from the Feminist Friendship Archive)IMG_0001

          A friend commits suicide

          “We are all patchwork, and so shapeless and diverse in composition that each piece, each moment, plays its own game,” Montaigne writes. “And there is as much difference between us and ourselves as between us and others.” Here is one of those pieces.

          Download the essay “A Friend Commits Suicide” (from Feminist Friendship Archive)

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            Chemo Renoir

            If only we lived in another century. Our rolls of fat would make us desirable and happy. You might think, as I did, that chemo would lead to weight loss, the one plus for some of us: haven’t we all seen images of cancer patients looking skeletal? Indeed, some do, notably the ones very thin to begin with. For those heavier to begin with, it means irresistible weight gain. No one seems to understand why, but when asked the answer is that they like us fat.

            When I decided to stop smoking in 1980, I went to a group held at the 92nd Street Y. It wasn’t the more famous “Smokenders,” but the method was the same: ranking, counting and wrapping cigarettes, cutting back as you went along. At the beginning of the first meeting, the leader announced the following in response to questions about what to expect: Some people will lose weight (eye roll), some will gain, and some will stay the same. I knew immediately to which category I’d belong. Within a week of stopping, I had guessed right: twelve lifelong pounds. Thanks to chemo, I’m now subject to the same karma, and learning to dress like a tent.

            When I see slender young women smoking in the street, or smell smoke on my students’ papers, I want to urge them to stop. I want to hand out little note cards with typed messages, the way feminist artist Adrian Piper used to, in relation to racism, with lines that say something like: “Dear Friend/You may not realize this but smoking often causes life-threatening disease.” But I know they will shrug and think as I did when their age: “It won’t happen to me. And besides, I don’t want to dress like a tent.”

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              Cancer Gadfly: Infusion for Two

              When infusion does not mean something to drink, herbal tea, or when in France, a tisane. Something soothing, that takes its flavor from the tender soaking of herbs, a delicious warmth, perfect for lingering at the end of certain meals, on a chilly afternoon, or a quiet evening. Infusion: a suave taste to savor.

              But now when we cancerites are scheduled for an infusion it comes not in a china cup but in a clear plastic bag of chemicals, suspended from an IV pole, dripped slowly through a slender tube leading to your arm (or hand, or port). Infusion, poetic word for chemotherapy, chemoflage, as Lochlann Jain dubs the language of euphemism we are lulled into accepting. What choice do we have?

              Last week my friend the writer Aoibheann Sweeney and I discovered that we were both having chemo the same day, on the same floor of the same institution, around the corner from the institution where we both work. How to resist taking advantage of the coincidence? The chemo nurses, always happy to oblige the patients, set us up in facing spaces. We could see each other across the aisle–and talk. We talked without acknowledging the chemicals slowly dripping into our bodies. It was almost like a continuation of the lunch we had just had together at the local Pain Quotidien. As though we had finished our meal with a tisane.

              Almost, but of course not the same at all. Nor, despite the shared setting, do we occupy the same space in Cancerland. Aoibheann is a young woman with breast cancer. She has already undergone mastectomy and radiation. She is also the mother of two small children. Her treatment has been dramatically more painful than mine but, fortunately, of a much shorter duration. Neither of us knows what our cancers will mean for the years to come. I hope Aoibheann has many years of life to ahead to enjoy, and books to write.

              twofridasnancy3Still, we were there together getting infused. Casual as everyone around us was―how amusing, two friends having chemo at the same time!―there was no way for us to ignore the violence of our reality. I witnessed Aoibheann’s nurse make a bad stick, fail to get the needle into her arm at the right angle. The last time I had a bad stick I almost fainted watching the nurse mangle vein after vein, and then bungle the draw. Aoibheann, spunkier than I’ve ever been, just held the piece of cotton over the problem spot, as the nurse went to find someone more competent to complete the task, and continued chatting.

              The cancer industry works hard at keeping patients hopeful. It’s in their interest to do so since it sells more drugs and makes more money for big Pharma, not to mention hospitals; maybe one or both of us will find that hope justified.

              For now, though, we’ll try to think tisane not poison, and be glad that unlike our suffering muse Frida, there really are two of us.

                Cancer Gadfly: Walking Back and Working Around

                One of the rare pleasures of old age is observing new words jump into circulation. Or appear to jump. We might just have been nodding. But thanks to Netanyahu’s political shenanigans we’ve been introduced to “walking back” as a transitive verb to mean what we used to call backpedaling. The prime minister is “walking back” his offensive pronouncements and even the elegant David Remnick doesn’t hesitate to use the word in his New Yorker outrage. The geezers among us might remember the lyrics to the song, “Walkin’ My Baby Back Home…” Now our baby is racist threats.

                The cancerites among us have been following the hoopla around targeted therapies for cancer. It’s all about genes and genetic mutations. You just have to get sequenced and presto you can have your very own personalized treatment. I have found myself drooling over the potential of anti-PD1 (I’d try to explain how this works but the Internet does a better job: hint: PD stands for programmed death.) It’s great if your genes happen to fit the available drugs and the trials, a kind of O.K. Cupid for cancer. Alas, it turns out that I’d only be eligible for a trial if my chemo had failed. Which it hasn’t four years in. Should I look forward to my chemo failing?

                20crabswim192The big cancer story is soon going to be featured on public television based on Siddhartha Mukherjee’s Pulitzer-prize winning book The Emperor of All Maladies: A Biography of Cancer. From the hype surrounding the documentary it would seem that the Emperor soon will soon be wearing no clothes at all. Targeting genetic abnormalities will win the famous war on the disease. We patients can abandon our IVS and their endless drips.

                In “Trying to Fool Cancer” oncologist Mikkael A. Sekeres aims to “walk back” the premature enthusiasm for the genetic mutation theories, observing that a few breakthroughs have  prolonged survival but “haven’t been curative. And we shouldn’t delude ourselves in thinking that standard chemotherapy is a thing of the past. Or that a few more months of life…is a panacea in cancer care.”

                It would seem that the gene/drug match fantasy is for now just another “work around.” A “work around,” I’ve recently learned, is a temporary fix, often for computer bugs, that does not meet the challenge of deeper problems.

                What does this suggest for the new category of people to which I now belong: people living with cancer, as we used to say “PWA”: People With AIDS? It’s our job to look out for ourselves, making the most of the time that remains, accepting the fact that most of us will not see a cure in our lifetimes.

                That’s our “work around.”

                  Cancer Gadfly: My Envyometer

                  There’s lots of writing about cancer―memoirs, graphic and prose, blogs, narratological and anthropological studies, science reporting. Most of the writing is bad, by which I mean overly cheerful about outcomes, dull and cliché-ridden (my pet peeves), but in some cases my envyometer starts going wild: Oh this is so good (true to my experience, dark and savage), I wish I had written it myself.

                  In the category of recent fabulous cancer writers and cartoonists: Miriam Engelberg, Cancer Made Me a Shallower Person; Susan Gubar, Memoir of a De-bulked Woman (and her columns in the New York Times); Lochlann Jain, Malignant; Eve Kosofsky Sedgwick, Dialogue on Love (and her essays and columns in Mamm). There are other superb memoirs but I’m not looking to create a bibliography. These are twenty-first century texts (except for Eve’s in 1999), and cancerography is changing along with the new drugs―in particular, targeted therapy and immunotherapy. Writer Jenny Diski is publishing her memoir now by installment in the London Review of Books.

                  waiting roomEDITsmallNaturally, some things about the illness don’t change. One of them is the waiting room. My friend Jay Prosser, living in England, sends me clippings of Diski’s memoir as it appears. I don’t have a subscription to the LRB, and so I’m dependent on Jay’s excellent clipping service. The memoir seems mainly focused on Diski’s cancer―very much like mine, late-stage lung―and her grouchy persona inspires me to increased bitterness. Unfortunately, even with comparable staging, so many variations within a given cancer exist that it’s rare to find someone having exactly the same treatment. Diski, for example, has undergone radiation and I haven’t (yet). Still, I recognize myself in her weariness and fatigue, impatience with being a patient.

                  Sometimes the most dispiriting aspect of cancer treatment is time spent in the oncology waiting room. Diski’s seems more depressing than mine―at hers you have to wait for your number to be called―like the line at the fish counter at Zabar’s (my analogy, not hers). But in key ways, the experience is overwhelmingly similar. Here’s a passage from her February 5, 2005 installment in which Diski describes the setting where she watches for her number.

                  You began to recognize faces and played the new guessing game: which one has the cancer? It wasn’t always easy to tell. What was clear was the distinction between those of us who were having ‘curative’ radiotherapy and those who weren’t long for the world and were having it to help with pain management. Some of the latter arrived in beds pushed by porters, patients all of them grey of face and still, never looking about them at their surroundings. Others more mobile, came having been delivered by volunteer drivers and sat grimly with various wounds and scars from surgery, breathing heavily, none of them looking around at the other patients waiting. We―the less ill ones―stole glances at these patients, those on their last legs or whose legs no longer held them up. Even the most buoyant and cheery patient in the radiotherapy waiting room must have seen the mirror the bedridden held up for us.

                  And so the distinction, clear at the start, between those undergoing treatments that in theory will prolong life and those for whom the game is up, finally doesn’t hold. Unless you are very lucky―who knows, you might be―while you are there you can’t escape the prognosis that one day you will be waiting in the place of those beyond hope.

                    The perils of pencils

                    It’s been impossible not to follow and mourn the crisis in Paris. The attacks have compelled as much attention as the events of 9/11, when we were glued, worldwide, to television and Internet reports.

                    The crisis also brought to mind the violence in Paris emerging from the Algerian struggle for independence in the early sixties: on the one hand, the right-wing O.A.S. bombings of Sartre’s apartment; on the other, the massacre that took place October 17, 1961, of a large―and still debated number–of pro-Algeria demonstrators among the French, some of whom died being thrown into the Seine, after having been beaten by police.

                    I was living in Paris then, a politically unconscious twenty-year old, dimly aware of what was happening around me, but too self-absorbed to draw meaning from the history I was living, the bodies in the river.

                    by Ruben L. Oppenheimer, Image from twitter, @RLOppenheimer

                    by Ruben L. Oppenheimer, Image from twitter, @RLOppenheimer

                    Among the cartoons that have flourished since the attack on the artists of Charlie Hebdo, one stands out for me as linking the contemporary Paris horror to 9/11 in mute perfection: the drawing by Dutch cartoonist Ruben L. Oppenheimer. The image has also been circulated on Twitter. I want to share it here in solidarity with and admiration for all who cherish their pencils―at any cost.