Indelible Memories, Legible Bodies: The Case of Graphic Illness Memoirs

nancy k miller - indelible memories - graphic memoir

I will be giving a talk on November 20th at an interdisciplinary conference in France (in French, English, and Spanish) with the overarching theme: “Memories, Marks, Imprints.” I show how the words and aura of an illness diagnosis and its subsequent treatment—my examples will be cancer (David Small’s Stitches) and mental illness (Bobby Baker’s Diary Drawings: Mental Illness and Me)—mark us in mind and body. This continues my earlier work on the trauma of diagnosis in graphic memoir, but with an emphasis on how the language itself, as delivered in most medical settings, can wound. (Fortunately, I get to do this in English—and with slides.)

View the conference information page and/or PDF. See also selections from my ongoing project, My Metastatic Life.

Cancer Gadfly: Drinking the Big Pharma Kool-Aid.

“Immunotherapy Drug Fails Lung Cancer Trial.”

Naturally the headline caught my eye since I have been reading about lung cancer since my husband was diagnosed in 2009 and I, two years later. My husband is well and I am now in “partial remission.” Not a bad outcome. Immunotherapy was not around when we started chemotherapy, and I confess that I’ve been longing to try immunotherapy in the hopes of achieving what appears to be an elusive remission.

I wrote about the advertising for Opdivo (the drug in question) almost two years ago, in an earlier post. I felt irritated by the hyperbolic promise of the language, invoking the amazing powers of your immune system to fight cancer–with the help of the new drug. Patient, heal thyself. The future you’ve dreamed of is now. One ad, a full page in color, featured a couple astride a cool looking motorcycle, poised for a long, adventurous life, against the bright blue background of a perfect sky. I probably envied their recovery.

I don’t remember exactly where in the New York Times, my daily newspaper, the ad appeared, but I’m struck by the fact that this report of the drug’s failure occupies the first page of Business section, rather than the Science section, or indeed the News section itself, which recently featured a multi-paged narrative about the miracles performed by immunotherapy drugs.

The Wall Street Journal also reports the trial’s failure as a business calamity. There is no attention to the fate of the patients, the individuals for whom the drug failed. Follow the money. Both articles focus on the drama of financial shock, shaky market shares, and rivalry with other drug companies–future sales figures of the drugs, not the future of the patients.

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In the Times the only mention of the 541 unfortunate humans in the clinical trial was to note that their tumors had not produced enough PD-L1 for the drug to work, as if they had failed the drug instead of the other way around. What did patients know about the trial as they entered it? In her “Living with Cancer” blog, Susan Gubar highlights the scandalous history of drug companies that do not report the outcome of failed trials, thus depriving patients of the opportunity to evaluate their chances.

I kept hoping my oncologist would propose Opdivo for me. Last year, a friend began treatment for lung cancer with my oncologist, on my recommendation. She received standard chemotherapy, as I had. Then immunotherapy. I thought she was lucky to benefit from Opdivo. Both therapies failed. This brilliant, courageous woman was then given 6 months to live; she died within 6 weeks. Where is her story?

My friend was not alone. The gap between the promotion of drugs and the life of patients is just starting to emerge. Here is just one sad outcome.

If I hadn’t already stopped asking for the drug, I would now. How many patients in future drug trials will know what happened to the 541 who came before them before they decide to enter a new trial?

Be careful what you wish for.

Cancer Gadfly: Still Alive, or The Mortifications of Survival

Readers of the London Review of Books will know that Jenny Diski has been writing diary posts about her cancer for over a year. In “Who’ll be last?” (November 19, 2015), Diski reflects on the embarrassing situation of those of us who announce our forthcoming death from cancer, yet still remain alive to write about it. She cites the case of Clive James who “after telling the world five years ago that he had untreatable leukaemia, has had to apologise for not yet being dead.” And offers a quiz show challenge: “Which writer lived the longest and wrote the most columns and/or books after the announcement?” On the other hand, if cancer “were a race, the first man home…would be Oliver Sacks (announced 19 February―died 30 August.” In this race, you win by dying, quickly.

Diski is tough on the subject of cancer. To say she is unsentimental about her illness is to understate the wicked violence of her prose. She delivers details about the treatments she endures in a tone that wards off sympathy, while shocking the reader into the realpolitik of surviving with cancer thanks to innovations in modern medicine.

I enjoy reading these irascible manifestos, hard to know what to call the genre–rant, screed, complaint―writing that bears witness to the kind of suffering we’d all prefer to avoid, honest testimony, without cheerful sanitizing, more rare than you’d think. (Susan Guar’s Memoir of a Debunked Woman, Jochlann Lain’s Malignant, and Miriam Engelberg’s Cancer Made me a Shallower Person―sadly, Engelberg died the year her memoir appeared–are brilliant exceptions to the rule.)

Most of all, what I liked about this installment is the limning of the embarrassment of remaining alive, outliving the statistics, off the charts, fill in the cliché.

This embarrassment weighs heavily on my mind because soon I will have another scan. I’m not sure which number this is, somewhere in the double digits. Except for the diagnostic scan in December 2011, and a serious scare one year into treatment that led to a biopsy, the scans have been consistently “good.” More recently, since I’m on chemo break, the oncologist calls them “stable.” As an acquaintance in treatment now for her lung cancer likes to say, “stable is the new good.”

Each time, though, I’m convinced the scan will be bad, and when it’s not I feel I should apologize to my friends for having worried them. If dying is winning, I’m still losing, but it’s not the kind of race where you really want to finish first.

Cancer Gadfly: Limbo

After a series of stable scans, and almost 4 years of monthly chemo, last week my cancer treatment was abruptly cancelled. No doctors, nurses, blood draws, or infusions, not, at least until the next scan, 3 months from now, delivers its verdict. Since my cancer belongs to the “treatable but incurable” variety, I’ll never be fully done with the scan-to-scan existence. Not even my eminent oncologist can say for sure whether my nodules (term of art) are dead or just playing dead. It’s cancer limbo.

Normally, limbo doesn’t have much to recommend it. My beloved Webster’s Third (circa1966) spells it out.

LimboyellowBut nothing about cancer is normal, and stable, they say, is the new good. Once you accept that, limbo starts to seem appealing. If I were the sort of person who could be happy, I would be. Believe me, I’m trying. In the meantime, however, I note that the timing of my new status couldn’t be better, under the wire for inscription in the Book of Life, and for writing my own book.

Shana Tova

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.

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

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.”