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.

Nothing but blue skies…

Little did I dream while riding on the back of a black Triumph motorcycle in Paris that several decades later I would be invited to picture myself perched on the back of a motorcycle for geezers, carrying the flag for cancer research, on our way to go fishing. (Fishing?!) NB: I imagine myself on the back seat since I don’t drive a car, or ride a bike, never mind a motorcycle. And maybe the “I” in the drug company ad is the guy in the driver’s seat. Gender identity here is not the problem.

photo (11)“My Cancer May Have a Powerful Enemy: Me.” The phrase neatly combines the persistent metaphor of cancer as a battle with the familiar American narcissism of a can-do self. It’s all about me, myself, and I.

“The power to fight cancer may already be in you.” True, but even truer, the beginnings of cancer may already be in you. One of the weirder things about the disease is that it takes root long before it expresses itself, sometimes years. When you get your diagnosis, many of us ask―I did―how long have I had it? Since it’s very hard to shake the notion that we have been harboring a criminal, indeed are somehow criminals ourselves, a cancer diagnosis often causes a guilty look backwards over our lives. Wow, all that time I had cancer.

The notion that you are responsible for healing from your disease reinforces the notion that you are responsible for having the disease in the first place: You gave yourself cancer, now take it away.

When you read the ad’s text, you see that this research in immune-oncology (already branded with an acronym I-O) is in fact more modest in aim than the drama of the blue-sky banner might suggest. It’s all about the future. The “industry” (at least big Pharma names itself correctly) is looking for ways to “offer renewed hope” (assuming you had any left or any in the first place) and the “potential of a longer life to patients with advanced cancer.” If you read the statistics on survival published by drug companies, you’ll see that “longer life” might mean a couple of months in god knows what condition (not their problem).

photo (12)I came upon a much more realistic view of cancer on a subway platform poster, represented by what appears to be a teen-age boy meditating on his brief life: 
“I was diagnosed with stage 4 lung cancer. I know I should have quit. I just never did.” Of course, that brings back the victim blaming rhetoric, especially associated with lung cancer and smoking (of course it’s important to quit as soon as possible). But at least the ad gives face to the pain of illness.

Whatever else it may be, cancer is not a cause for celebration.

What me worry?: Living with the C. Word.

Having cancer is bad enough without being urged to enjoy your diagnosis, believe you can will it away through your state of mind. And it’s not just nurses chirping “stay positive” as they remove the IV drip from your arm. Sloan Kettering Memorial, the putative mecca of cancer treatment, waxes enthusiastic with its billboard advertising: “We’re looking at cancer in a way the world never has before.” Their byword: “More Science. Less Fear.”

photo (7)

True. More science arrives daily, and for some cancers, improved survival rates, or what’s called Progression-Free Survival (the term courtesy of drug companies reporting on their trials). PSF: that’s me, my drug has worked longer than anyone (aka statistics) imagined. My oncologist says I’m an “outlier.” My friend Susan Gubar, also outliving her prognosis, has been called an “exceptional responder.” Since in neither case do the doctors know why we keep hanging on, it’s difficult to feel joy in the label, even if it means more life for now.

Grief, anger, fear, these negative emotions have been banished from Cancerland. It’s all about “staying positive.” My laconic oncologist Dr. Sweater, in response to my announcement that I was on a crusade against positive thinking, said that physicians were learning not to exhort patients to assume a positive attitude, since it might make us wonder, Oh, so negative thinking gave me cancer?

The drug companies keep at it, though. Here’s a full-page ad for targeted therapies, the treatment du jour: the glories of cancer! Self-esteem mantras underwritten by big Pharma. But the truth lies in your genes, no matter what you think or feel. Have they no shame? (That was a rhetorical question.)

(The ad, sponsored by Bristol-Myers Squibb appeared in the New York Times without photo credit.)

(The ad, sponsored by Bristol-Myers Squibb appeared in the New York Times without photo credit.)

That said, I am grateful for the many kind messages in response to my previous post. I’m too wary about Facebook to answer freely in public. As it is, I seem to have shocked some of my students, who are “Facebook friends,” which was not my intention. I feel sad that they now are living with my cancer, too.

Message to my evil hacker: why not take my cancer while you are busy stealing?

All in the Timing

By the time I was making the final revisions to the Breathless manuscript, I had been diagnosed with  lung cancer―“incurable but treatable,” as today’s oncological discourse codes the situation of late staging. In the final pages of the memoir, where I reflect upon the destinies of the characters important to me in the narrative, I account for the deaths from cancer of my ex-husband as well as that of my Paris roommate. I did not, however, reveal my diagnosis. Despite the truth-telling pact of autobiography that I’ve always held to, despite the fact that I wasn’t sure I’d survive to see the book’s publication, I could not bring myself―as a writer–to end the memoir with that revelation.

Naturally, it was not the only omission in the book―I spared the reader many humiliating episodes of my twenties―but this was different. To end the story on my prospective death would have recast the narrative as cautionary tale, since the girl I was smoked on almost every page. I didn’t want to provoke the moralizing logic that stigmatizes lung cancer patients: you smoked, therefore you got cancer. Invariably, anyone I told of my diagnosis would ask: “Did you smoke?” When I said yes, a horrible silence would ensue during which I imagined my interlocutor’s speech bubble saying with unabashed relief: “I’m so glad I didn’t smoke.” What I heard, spoken or not, was “You brought it on yourself.” But lung cancer, I’ve learned, affects a substantial number of people who never smoked (especially women, and including my mother―no one knows why) and some smokers never develop cancer. Nonetheless, both the current stigma and blame for the former smoker is as pervasive as secondhand smoke, and fundraising for research into the disease suffers from this vision of the disease.

No pink ribbons for us. Lung cancer ribbons are white. It’s difficult, if not impossible to imagine a campaign to “beat lung cancer” with the appeal of “the race for the cure,” not to mention all the pink artifacts you can buy to support research. Of course, it’s easier to picture breasts than lungs, and white isn’t much of a color. Except for the color problem, though, I’m not suggesting that one cancer is “better” or “worse” than another (though some surely are in terms of survival statistics). But the disparity in fund raising remains significant, and lung cancer in women now claims more lives than breast cancer.

lungcancerfactsheet

Breast cancer can generate the same sense of blame and shame. Miriam Engelberg, in her bitterly hilarious graphic memoir, Cancer Made Me a Shallower Person, shows the response acquaintances typically give when they realize―from her chemo baldness―that the artist  has cancer. When she explains that she has breast cancer, the interlocutor typically asks: “How awful, did you have a family history?” And Engelberg imagines a cancer-free person reassuring another cancer-free friend: “So don’t worry―you and I are perfectly safe.” Naturally, we all want to know what caused our cancer, even though in many cases the origin remains a mystery: what could I have done? In one panel Engelberg depicts a support group member saying, “and I think I caused this by eating too much cheese.” Engelberg died in 2006 the year her memoir was published.

Now that Breathless is launched, and its survival rate in book land more or less clear, I’ve wanted to come clean. To that end I’ve created a new project on the website, “My Metastatic Life,” and I will post about the experience of living with cancer from time to time. It makes me anxious to expose myself this way, but it’s important to acknowledge the place of cancer in the world, since statistics suggest that a staggering number of people have or will be having cancer, and to realize that cancer patients are not, in that sense, alone.

October was breast cancer awareness month. November is our turn to clamor for attention and support. Look for those white ribbons.