Aftermath

Amazing series of photographs by photographer Kerry Mansfied, Aftermath, documenting her mastectomy and reconstruction after a diagnosis of breast cancer at the age of 31.

I love what she says:

“Faced with the nihilistic process of radical chemotherapy and surgery, my ideas of ‘where’ I exist turned inward. As the doctors, with their knives and chemistry broke down the physical structure in which I lived, the relationship between the cellular self and the metaphysical self became glaringly clear. My body may not be me, but without it, I am something else entirely. I knew that my long held image of myself would be shattered. What would emerge would be a mystery.”

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.

16 July 2009: the same sad, sick self

My brain’s still operating strangely, slowly, a sluggard of drugs. Three o’clock in the afternoon, having only just really begun the day. Tea and Scrabble with H. earlier, feeling strange and anxious all the time.

Last night—the experience of seeing a double rainbow arc perfectly across Oxfordshire. A strange electric sky—and myself uncomfortable and drugged in the middle of it.

And always saying well, I suppose there is tomorrow.

This incredible sense of panic now, near-hyperventilating with having half-allowed my mother to book a flight for my return. Eventually I will have to do it, admit that America is there, my blank accidental future too, that everything I’ve ignored all this time still exists as profoundly. I try to convince myself it will be “good to” be home, to “sort things out”—but truthfully I want to see no one; I want to hide here.

How adolescent it all sounds. But this terrible sense of foreboding overwhelms—a dreadful, panicked, powerless feeling in which everything sinks in: the cancer, the lack of prospects, the dim grim end of our love.

Today on the train the air felt electric with waiting rain. A peculiar light in which even the Didcot power station appears majestic. The woman beside me wore a polka-dot dress and crossed her thin ankles on the seat opposite. I thought: how I would like to be reading these stupid journals in twenty-five years time, with all their desperate insistence on considering mortality, on feeling helpless in and worthless to the world, and to know that even this was a phase as everything else was, and that I did what I cannot even fathom now: live through it.

L. wondered whether four months since receiving a diagnosis had been enough time to “process” the reality. I don’t know—have not considered it. My first thought, nearly, on learning I had cancer was that I am not the “kind of” person who can handle it—believing that my inability to cope with it somehow made me immune to it. But nothing changes, not really—what, after all, is the “reality” of a disease you can’t see? So I have chemo and get sick and my hair falls out like in the movies and that becomes normality to me. I felt a rush of sadness this morning thinking how lovely it would be to be in my London flat today and feel some ownership over my own life—but I am not in mourning for it. What should I mourn for but the loss of myself—or, will I get to the point at which I do not realize I am already gone?

God, the uncertainty of the other side of the Atlantic—all the pain in between. My impossible love. I am so sorry for everything.

A series of countdowns now. 10 days til home; on return, 3 days til biopsy, then 8 til surgery.

In the bath I look down at my complete, living body and want to scream with rage and pain.

Thinking about the sadness of hometowns, unearthing old loves. I don’t want everyone else to go glibly on with their own existences while I falter and flounder. I was always so far ahead…

Did any of the rest of my life actually happen? Because I seem to have been deposited here without any point of reference.

I have been constantly waiting on the world to offer me something.

I am terrified of stretching to what would seem to be the outer reaches of my ability and finding nothing to draw on. Which explains to paucity of my production.

Usually I grow bored with blank notebooks, buy a new one in an attempt to strike out upon some more significant course and catalogue it. Now I’m faced with an insignificant ending, and a new notebook readily assigned with the symbolic pressure to be meaningful.

But tomorrow is just another Friday
And I am still the same sad, sick self

23 June 2009: a cry for connection

Awash again with chemo after Dr. S’s U-turn in treatment (a standoff in his office yesterday, his defensiveness and awkwardness and my ever-present frustration and anger)–decision to go ahead with the final two chemo treatments with a view to mastectomy in early August. An awful six days that led up to this: quarrelling with K., bad sex, wanting to distract myself, desperate for intimacy and left ultimately with more and more evenings crying into pillows pathetically. Frustrated that all of this heartache and uncertainty could have been avoided with a little clarity and concern from the hospital. A biopsy date’s still undecided; more and more of this last-minute news. Like the biopsy’s done under general anesthetic and requires an overnight hospital stay. By the way. But what else to do but plug on with the meantime?

I’ve just read Sontag’s early journals–her intensity, beauty, brilliance–at that age, having so surpassed me intellectually/professionally/in experience, in range and depth and meaning of experience. I do wish I were allowed more access to her mind in them–that the journalling were not so fragmentary.

She says:
“In the journal I do not express myself more openly than I could to any person; I create myself…it does not simply record my actual, daily life but rather–in many cases–offers an alternative to it.”
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“The writer is in love with himself…and makes his books out of that meeting and that violence.”
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“To write you have to allow yourself to be the person that you don’t want to be (of all the people that you are).”

I’ve ordered Illness as Metaphor — an egotistical interest, I guess, in the meanings of my own illness (or lack of menaing). Like the search for & disappointment with Sedgwick’s book–a cry for connection.

In the waiting room yesterday, reread Virginia Woolf’s On Being Ill:

“All day, all night the body intervenes; blunts or sharpens, colours or discolours, turns to wax in the warmth of June, hardens to tallow in the murk of February. The creature within can only gaze through the pane–smudged or rosy; it cannot separate off from the body like the sheath of a knife or the pod of a pea for a single instant; it must go through the whole unending procession of changes, heat and cold, comforting and discomfort, hunger and satisfaction, health and illness, until there comes the inevitable catastrophe; the body smashes itself to smithereens, and the soul (it is said) escapes. But of all this daily drama of the body there is no record.”

–pre-empting, perhaps, all the piss and shit in modernism.

I see myself this way: as gazing through the pane/pain of the body. Even as my hand cramps here. It’s something I have always found difficult to imagine about writers, prose writers particularly–how they manage to sit there, inside themselves, and produce–how many times distracted by this restlessness I always seem to have? By hunger and malaise and lethargy and the body’s desire to move, pace, ignore the dreadful submission to the immobile mind…

26 March 2009: Chemo brain, pt. 2

Head-fog. Waitrose: panic. Feeling everything flaking and peeling. Not myself in my own environment — Kensington Gardens beautiful, and I barely able to register it. Getting from one side of the park to the other. Utter helplessness. Disgust with my body. If I am this disgusted by a tumor, how much moreso by the absence of a breast?

And will I lose faith in God when I finally lose my hair?

Michigan agrees I may defer for a year. Fall 2010. Unreal. Inconsequential. Will something as remote as Fall 2010 ever happen?

My mother’s mailed me ridiculous pajamas and I am wearing them in my absurdity. I can’t believe the lack of consideration with which I’ve approached all of this.

And I honestly wonder–do I deserve this?

There’s no help anywhere I can see, no comfort. But in doing what I have been–ignoring. Denial’s set me plodding along this rash path already. Without choice. Entirely confined to a body which has been set in motion to destroy me. And a body swept over by drugs that attempt to destroy the cancer by destroying everything else.

“Inspirational stories” on the breast cancer websites etc. inspire me to do nothing but want to kill myself before the cancer kills me. These breastless women with cancer metastasising to bones and lungs, eating their ovaries and their eyes. Well, in the middle of it all, they say, they find the time to enjoy ice-cream and dance to Bon Jovi.

Anything could happen.
Anything could have always happened.
But I still don’t quite believe it’s actually happening.

And I’m envious of everyone walking around in their ordinary lives, not knowing with what difficulty I walk to the store and select nectarines.

And I must constantly remind myself that I don’t know, can never know, with what great difficulty they are doing the same.

And that I do not know what I will become as a result of it all–my first instinct was to believe it would be “blessed,” but more and more I fear I will either be merely bitter, or else nothing at all.

My comprehension of time is entirely skewed by the insomnia. It’s seven-thirty and I’m already exhausted, too much so to sleep. Have been awake since 3 AM. If I sleep now, I’ll wake up at 1 or 2 at best. And then be deposited onto the unmerciful day–

Tomorrow the kids & I must finish Hamlet. Assess the damages, body count.

How can I possibly ask him to watch me deteriorate like this? Upon diagnosis I felt close, connected. Now it’s as if we’ve developed alternate identities in order to plunge through the next howevermany months.

Or maybe it’s just that we’ve not become the people I hoped we be through this,

like fucking Love Story.

I’m less afraid of death than afraid of ugliness.

And all I can see stretching infinitely is my own ugliness.

And knowing I have no grace or dignity to draw on,

and no reason to be loved.

(I continue to adore PK. “I don’t even have a dentist,” I wrote to him. “Now I have an oncologist.”

“It’s a bit precocious,” he replied).

K. does not believe in an ‘”interventionist” God. Which means he does not pray for me; prays merely to accept me.

But I want all the prayers and milkshakes there are;

I want to be worth curing.

Only women bleed

Today, I do too.

Only yesterday, I was filling out medical forms that asked the dreaded “date of last menstrual cycle.” Dunno…April? May? June? When did the Zoladex kick in?

Maybe it’s the moon, or the fact that my mother got hers a day ago.

Or maybe  my body’s heaving this huge sigh of relief after the BRCA results. Ovaries! Periods! My stars, I’m giddy. I belong in a Judy Blume book. Are you there, God? It’s me…

When I was a teenager, my cramps were so unbearable I had to come home from school once a month. The pain was so intense it made me puke.

Today, the pain feels beautiful.

I’m finally identifying with Anais Nin and the awe of the “moonstorm.” 

Sorta makes me wanna run out and sleep with Henry Miller.

Scar

 

 

 

 

 

 

 

 

Each Scar I’ll keep for Him
Instead I’ll say of Gem
In His long Absence worn
A Costlier one

Emily Dickinson

And by ‘anxiety,’ we mean ‘expense.’

In case you missed the controversy sparked yesterday by the “government task force” (can anything sound more Orwellian? who are these people?) over new mammography guidelines, and let’s be honest, I doubt you did: women should start having mammograms at 50, not 40,  and every other year, to reduce ‘anxiety.’ Because the aforementioned anxiety, the possibility of ‘unnecessary biopsies’ &c., for the majority who will not be diagnosed with cancer outweighs the inconvenience of death for the few people who will.

Now, I too can dig my John Stuart Mill, but that sounds like some crazy utilitarian bullshit to me.

 And oh, also, breast self-exams are useless and should not be encouraged.

The age debate got me thinking about the mammograms I had done of my left breast, the ones with USLs: unidentified suspicious lesions (still unidentified and suspicious as of this posting). When I handed my file, with an oncologist-ordered mammogram, over to the lady behind the desk of the breast screening department at Charing Cross, she said:

“You can’t have a mammogram because you’re under thirty-five.”

And I stared at her, bald and incredulous. And I wanted to say:

“Can you apply that logic to the cancer in there?”

—

Three times in the past couple of weeks I have been asked my age, and each time I hesitated. I honestly couldn’t say. Saying “twenty-five” seemed absurd. Because whatever it is you associate with being twenty-five–like having the rest of your life ahead of you, when “the rest of your life” is something long and non-hypothetical–that’s not what I am.

I remember discussing immortality in sixth grade. The teacher asked us, a group of 12-year-olds, what would be the perfect age to spend eternity as.

For some reason, the class consensus was 25.

I wonder what seemed so magical about it. Myself, I’d chosen 10. Maybe even then I had a premonition. Or maybe I was just a strange, precocious pubescent, already nostalgic for my youth.

—

Something else that is strange. During my last checkup, the nurse asked about my Tamoxifen side effects in near baby-talk: “Are you having little hot flashes or anything?”

I’m tired of having my cancer cute-ified because of my age. I’m terrified by what the chemotherapy and the Tamoxifen have done to my body. I hate that I’ve gone through menopause in my twenties. I hate that I haven’t had a period since July, maybe earlier. I’m worried that I’ll never have one again.

 And there’s nothing “little” about my flashes, lady.

—

Re: mammograms, The American Cancer Society and the American College of Obstetricians and Gynecologists are sticking to the earlier recommendation of 40.

Guess they’re not part of the Force.  

(YSC’s response here)

Help, I Think I’m an ‘A’ Cup

When I once googled “mastectomy support” in search of women who were also trying to deal with the psychological implications of their cancer diagnoses and surgeries, most of the results it returned involved places to buy bras and prostheses.

Mastectomy “support” is not for your brain apparently, but just for your boobs.

Cuz it’s how you look, not how you feel, that matters.

Like I used to get comments on my “healthy glow” during chemo. The skin flush was a side effect of the Taxotere. But whatever. If you think I’m lookin’ rosy, I guess it doesn’t matter that I feel like death.

And if “no one will know” that you’ve had cancer because you’re sporting a reconstruction or prosthesis, I guess that means you can go ahead and get over it. Because in everybody else’s eyes it’s over, or never happened.

—

Part of the difficulty surrounding my surgeon’s decision was trying to determine how to treat cancer in a woman with, as she said, “such small breasts.” It wouldn’t be possible, she decided, to remove a 2.5 cm lump and leave a “cosmetically acceptable breast.”

Acceptable to whom? I wondered. She’d decided what was “acceptable” without ever asking me.

This was the same woman who, minutes after first telling me I had cancer, had felt one of the most important issues to bring up was “you will lose your hair.”

I’m not trying to chastise her for raising the issue, because it seems to be (though startlingly, I still think) a huge, even the biggest, concern for many women.

But I thought: I have a disease I could die from, and you’re talking about my hair?

—

The other day I finally went underwear shopping. An older lady was asking for the saleswoman’s help. “I’ve had breast surgery, and now I’m not sure what size I am,” she said.

Me too! I wanted to scream. Despite what you may think, despite how I may look, I’m not some 25-year-old choosing underwear to look sexy for her boyfriend; I’m trying to find something to put over my stitched-up, ex-cancerous un-boob.

I’ve had breast surgery, and I don’t know what size I am. The cancer occurred in my bigger breast, and for the sake of symmetry the reconstruction was meant to match the smaller left, meaning I’ve dropped down from a B to an A cup I guess. But that’s not really the problem here. I’ve had breast surgery, and I don’t know how I am.

The other night I dreamt of being in a bathtub with someone and wondering what to say, how to explain my body. Those dreams in which you find yourself suddenly, inexplicably naked are the worst. Even worse when you’re naked, and missing a breast.

But least I found something to replace the layers of T-shirts I’ve been wearing in lieu of a bra—a sort of stretchy, comfy, thin-strapped sports bra with a little padding for $4.99.

And I can amuse myself by thinking of “AA XXX” by Peaches as my theme song.

external shows

The other night we felt like slumming it and went to pick up Dominos in Didcot, where we saw the typical weekend chav-rabble cluttering the pavement outside, queuing up for pizzas and fish and chips. Obese. Smoking. Pregnant.

And I wanted to say, excuse me, it appears as if you’ve chosen not to use your god-given bodies for anything but destruction. Mind if we trade? You may as well take this one; it’s trashed with cancer anyway.

—

Anecdote: one of my hospital roommates (of whom more tales to come) was in for a hernia operation. From the other side of the curtain, I heard the surgeon explain to her that they had had to pull her stomach out of her chest.

Pull her STOMACH out of her CHEST.

“Uggh,” she said several times that day. “I feel like I’ve been pulled backwards through a hedge.”

The figurative language, I found, was insubstantial. Surely in such an instance it is more striking to speak literally: I feel like I’ve had my stomach pulled out of my chest.

So this is what I mean now when I say I dread the question “How do you feel?”