7 August 2009: awaiting my own tragedy

Day after biopsy–sitting bandaged in the backyard. An excruciating experience all around–less from the pain of the surgery than the hospital inefficiency, in a corner alone for hours afterward, told I’d see the surgeon–that I must see the surgeon–before leaving. “Before six.” Near seven I’m confronted with a registrar who does nothing, looks at my bandage, asks, “Are you always this pale?” Refuses to answer when I ask how to take care of my stitches, dressings, etc. Says the nurses will explain everything. She goes home. The nurses don’t know. Seven days or one, covered or left exposed? So I am still bandaged, taking painkillers and waiting.

What an absolute mess I must seem–and am, snapping at everyone and crying. Jetlagged still, having managed to sleep half an hour before going to the hospital, my first time under general anesthesia, terrified and alone. And back for the mastectomy, the “real” surgery, in a week. The seemingly impossible process of recovery.

The girl in the next bed was laughing, joking with the hospital staff. She was in to have a fibroid cyst removed. “As long as no one cuts my nipple off,” she says to the nurse, smiling. And I think–this is wrong, a grave mistake, shouldn’t it be me there? Instead the urgency of my situation is amplified. Five months ago, it is now almost, waiting for the diagnosis which was almost certainly, they assured me, fibroadenoma. Then cancer. The giant leap for womankind. Now this radioactive, surgical biopsy, more serious, but somehow less horrible than the first because it wasn’t a surprise, an invasion of that magnitude. Now waiting to find out not whether I have the horrible disease, but how horribly I have it. Grading. I always got good grades. And despite my perpetual pessimism about most things, I have a strange optimism about biopsies. Which is dangerous of course, because look what happened before.

So the doctor I met with in Pittsburgh says he’d be “surprised” if it had spread to the lymph nodes. But then, that’s exactly what they said here, only to find it was cancer. Surprise! After “I’m sure it’s nothing.” Sure. That roomful of people, looking at each other, nodding in unison to confirm how surprised they were. Me, stupid, faint, childish in my polka dot skirt and Mary Janes. What does their surprise mean to me? Should I feel honored? At their optimism, if that’s what it was. Dr. S. saying, “we’re hopeful.” As if hope were a treatment, a cure. As if it were anything.

It was raining then too, the day of my diagnosis. I was clutching my blue raincoat in the hospital hallway. Raining the day I began chemo, when I climbed into the loft bed of my little flat and vomited. And a downpour yesterday; we drove to London, dangerously, in it, and it began again fourteen hours later in time for us to leave. K. ran to the car while I stood outside the hospital, holding nothing and sobbing. “Are you okay?” someone said. And I nodded, because what do you say to a stranger?

“How old are you?” the nurse asked yesterday. “Twenty-four? You’re a baby.”

Of course I am. I have never felt younger or more helpless, never. And my body has never felt older, more decrepit and disgusting.

The bandage is not so bad, it’s everything else. My hair of course, getting patchy, falling out steadily, the pathetic covering I regrew over the past few months littering the pillows. Lost hair, gained weight. They made me strip off my nail polish yesterday and I got a look at my cracked yellowed nails. All to complement the fake, nippleless, Franken-stitched breast they’ll make me. I feel sorry for K. I wonder how he can stand it. Maybe he can’t.

At home, I flipped through my high school journals, and was not as embarrassed at that self as I imagined, but amazed at my intensity. Perspicacious pessimism–and actually prophetic in it, or at least realistic. I wrote at seventeen: “I am awaiting my own tragedy.”

Everyone has one, surely, coming up, sooner or later, I supposed. To varying degrees, maybe. But I’ve always been waiting for it. Or maybe  pessimism causes cancer, that holed-up negative energy. Maybe. Either way–awaiting my tragedy? Here it be.

23 May 2009: horrible alien logic

St. Ives: Virginia Woolf’s lighthouse from the living room window. Too beautiful to be England, I thought. How could anyone fail to find peace & happiness when perched so extraordinarily in this perpetual novel-setting?

I’ve been beset with gifts, kitsch: a wooden angel, a four-leaf clover, a cross blessed by the Pope. All-purpose prayer chain emails. It’s that religion of gestures. Pink ribbons and shit. All absurd and sinister. I still can’t quite believe that any of it–applies–to me.

The threat of reality–for this scenery, the strong, long sweep of the land, the patchy bluegrey water peppered with almost inscrutable boats, the stream of seagulls, the clusters of rooftops, is so unlike my allowable reality–becomes more persistent, unable to be evaded. Returning to it–to work, to chemo, to K….and beyond that, to America, to Erie, to illness, to adolescent depression and listlessness–terrifies.

The same enduring stories from my mother–my birth, our personalities as children–these apparent selves we cannot remember and with whom we struggle to identify, to be able to explain ourselves through out parents’ eyes. Stories of her parents, their idiosyncracies, this hypothetical ancestry.

—
“Death has entered. It is inside you. You are said to be dying and yet are separate from the dying, can ponder it at your leisure, literally see on the X-ray photograph or computer screen the horrible alien logic of it all. It is when death is rendered so graphically, is televised so to speak, that you sense an eerie separation between your condition and yourself. A network of symbols has been introduced, an entire awesome technology wrested from the gods. It makes you feel like a stranger in your own dying.” –Don DeLillo, White Noise

—

“The horrible alien logic” — I feel that. But the “eerie separation” is persistently familiar–a separation not just between my cancer and me, but between me and the rest of the world. That old social phobia. A defensiveness in the face of it all. Not feeling worthy. The middle school lunchroom syndrome.

Jade Goody & the mythology of redemption: the spectre of cancer in the media

Jade Goody–the Big Brother reality television “star”-cum-cancer martyr–died the day before I started my own chemotherapy. I remember standing on the platform at the Royal Oak train station, waiting to go to the hospital for my first chemo treatment, looking at everybody’s greedily-grabbed copies of the Metro and the London Lite; even in the “real” papers, Jade Goody was the front-page news (alongside findings of a recently-published study, coincidence or no, about the non-improvement of cancer survival rates in the UK).

 I don’t know how large the storm surrounding this woman was in the American media, but in England she was as ubiquitous as Big Brother himself: first for the car-crash entertainment value of her all-around ignorance and repugnance, with the cherry-on-top of racist allegations–and then for the car-crash entertainment value of her stage 4 cervical cancer, and society’s ensuing Schadenfreude at observing her decline, glued to the television with eyes wide.

She made a mint out of that damn cancer, and, maybe even more sickeningly, seemingly won everybody’s sympathy from the media exploitation of her sickness –from her showstoppin’ Cancer Special, to her eight-weeks-to-live “fairy-tale” white(trash) wedding, to which she sold the rights to Ok! magazine for £700,000. (A  few months after Goody’s death, her previously-incarcerated Prince Charming was arrested yet again for an alleged sexual assault on a teenager. This may want to be excluded from the Disney version of the Jade Goody Story).

The debate raged as to whether Jade, being dumb as pig shit, was the victim of the media’s agressive manipulation of her, or whether Jade, being an unscrupulous media whore, was in fact the one doing the manipulating of her audiences. But whoever was pulling the strings, the result was the same–as her Guardian obituary put it:

The pig who deserved burning had become our sacrificial lamb, garnished with sentiment. Britain had turned 180 degrees to embrace a woman it had earlier scorned. Symbolically, at least, it was the right time for Goody to die.

–what someone on the BBC referred to, as I listened to Radio 4 while waiting for my chemo, as “the mythology of redemption.”

Goodbye, Brittania.

Thanks for all the free health care

and the Shakespeare.

I leave behind one of my breasts,

a biohazard box of post-chemo needles,

and the greatest man I know.

(I know we’ve had our differences,

it’s not exactly been all Shelley-and-Keats with us but

you’ve kind of been the love of my life.)

the prime minister’s human shield of cancer patients

Every so often Gordon Brown sticks his head out of his hole with a promise between his teeth like a peanut.

“On cancer, Mr Brown said that the waiting time for women for the results of cervical screening tests would be cut from six weeks or more to a maximum of 14 days.

The age range for routine screening for women for breast cancer – currently 50 to 70 – will be extended to 47 to 73, bringing an extra 200,000 women a year into the programme.

Mr Brown said that the government would deliver on its manifesto commitment to ensure an appointment with a specialist within two weeks of referral for all patients with suspected breast problems. ”

So that’s a start I suppose.

I don’t think 200,000 women can cushion his career.

—

Sarah Brown’s charity seems impressive; despite the fact it sat right outside the hospital where I was treated, I never made use of it. I can’t exactly say why; there was something awkward in it for me. That it would make everything more real somehow — to have walk into anywhere and say the words hello, I have cancer.

[more’s the pity, cuz I missed the opportunity to have Michelle Obama make me tea]

And I had this sort of irrational fear they wouldn’t believe me. I barely believed it myself.

they sent me out into the wide world

I don’t know, I felt like I should say something.

It’s my intention to maintain a steady presence in the BRCA/breast cancer ‘blogosphere’ (that absurd term) in pursuing this project, but things are/will a bit sporadic due to an impending major emotional breakdown.

This week I’m leaving England. Yep, this is the big one.

Packing up years of your life is an impossible process. I’ve got these great heavy bulging suitcases to drag across the ocean but everything inside them seems absurd.

And I’m tired of always leaving everywhere, of living my life in intervals of one year or less. So many suitcases, so many disposable things. Disposable friendships and connections too. Review of the past five years: Eight months in Oxford as a visiting student, two months in Brooklyn as an intern. Senior year at Vassar, two months teaching in Lancaster, Oxford for the year-long master’s. A year living with K in Shepherds Bush, like grownups, then six months on my own in a closet in Bayswater. That was supposed to last longer, being there, but I missed too much work from the chemo and couldn’t pay the rent.

It’s kind of like cancer evicted me from my life.

So for almost six months I’ve been living with K & his family in the countryside. It’s nice, but it’s not my home. Now I’m going ‘home,’ and that isn’t my home either. I don’t know what I’ll do, or how long I’ll stay.

I wasn’t supposed to return to America under these circumstances. I thought I’d finally be striking out in my proper place, in Ann Arbor, feeling purposeful in my Ph.D. and putting down roots somewhere, finally.

A nomadic existence doesn’t mix with illness. There isn’t any comfort in it; there isn’t any stability. An awful Heimweh — being homesick for a place that doesn’t exist. Sickness for a place I imagined I would have someday. With grownup things in it, like winter coats and spice racks.

Instead the only comfort and stability in my life came in the form of K, and now I’m leaving him too.

Here’s something I wasn’t expecting: the emotional upheaval of learning you have cancer it’s pretty awful, but it doesn’t hurt as much as a broken heart. It was one of the first things I thought when I was diagnosed, as I tried to measure my own response. Now I have to trade the cancer for the heartbreak.

And I keep thinking how apt are these lines from Mahler:

Die zwei blauen Augen

von meinem Schatz,

Die haben mich in die

weite Welt geschickt.

Da mußt ich Abschied nehmen vom allerliebsten Platz!

O Augen blau,

warum habt ihr mich angeblickt?

Nun hab’ ich ewig Leid und Grämen!

[The two blue eyes

of my darling

they sent me into the

wide world.

I had to take my leave of this most-beloved place!

O blue eyes,

why did you gaze on me?

Now I have eternal sorrow and grief.]

‘cancer cases found after errors’

Ohforfuckssake.

Just when you’ve managed to profess a tiny bit of faith in the medical profession, something like this hits the fan.

I had this recurrent fantasy throughout my treatment that the same would happen, but in reverse. For awhile I even convinced myself that the reason I wasn’t responding to the chemotherapy was because they’d been wrong; I didn’t have cancer at all.

Turns out I just had a very aggressive kind of cancer that was seemingly immune to chemo.

“To be told that you don’t have breast cancer then to be told that you do have breast cancer must be very distressing,” the director of breast screening (he) says.

It must be, indeed. Let’s engage in a thought exercise. Can you imagine it?

Because things like this expose so well the sense of powerlessness that accompanies cancer. How you aren’t even aware that your own body is revolting against you. How you have to secede your ‘self-reliance’ and forfeit control of your body–deliver it entirely into someone else’s hands.

Usually some man’s hands.

I survived the NHS

I think I need to get this printed on a T-shirt and wear it around Western Pennsylvania.

One of the things I am most dreading about my imminent return to the US is having to face the omnipresent Republican propaganda which, in absence of cogent analysis of the issue at hand, somehow makes continual recourse to the following tagline:

“If I lived in England, I’d be dead.”

I lived in England. I got breast cancer. I was treated. On the NHS. And am living to tell about it.