Pinktober, Take 2

I’ve not written here since beginning the Ph.D. this fall–unsurprising, I suppose, considering the how much else I’m supposed to be writing right now; but then, it is my mind’s constant confrontation with cancer that prevents me from getting things done. I’m not sure if this is biological–the destruction of my brain function from the chemo–or psychological, but either way, it is an omnipresent obstacle to my concentration, to my caring about anything. Always in the background of this program there is murmuring about the career trajectory–quals and prelims and dissertation and the academic job market six years from now. Six sick years.

It doesn’t help, of course, that it’s dreaded Pinktober–and though I’m not as angry as my first “survival” enounter with this media frenzy phenomenon, see rant c. 10/2009–I’m beset with inexpressible sadness and frustration every time I walk up to the library and have to step on pink ribbons rendered in sidewalk-chalk by cheerful sorority girls. The bitterness is there too, of course; I can’t help but half-imagine one of them getting breast cancer in her twenties, and see how many pink ribbons she’s graffiting campus with afterward.

Then you go into Borders just looking for a little Charlotte Bronte and see a display table packed with Chicken Soup for the Breast Cancer Survivor’s Soul.

 I’ve become fascinated by the photographs in David Jay’s exhibition The Scar Project , portraits of post-mastectomy breast cancer patients–“survivors,” he says–between the ages of 18 and 35. On his website, Jay says:

  “For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their femininity, their sexuality, identity and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them and the strength to move forward with pride.”

I’m uncomfortable with this rhetoric of rescue via male-photographer-facilitated exhibition (“Through these simple pictures, they seem to gain some acceptance”).What would Judith Butler have to say about the male gaze here, one wonders? However, I think Jay’s project is important in showing bodies. In them, I don’t necessarily see the fierce Amazonian warrior-woman society wants to see in the “survivor,” so that they can close themselves off to the implications of illness and intimations of death: a warm-and-fuzzy “pink” feeling–a modern manifestation, I think of, sentimentality’s commodity culture (I have been reading the incomporable Lauren Berlant of late)–that precludes any desire to participate in breast cancer politically, to any actual effect.

I regret having had reconstruction. But that is another post.

“Breast cancer is not a pink ribbon,” Jay asserts on the site. At least we’ve got that right here.

The question, though: is Jay’s photographic exhibition an act of exhibitionism?  Speaking of which, I came across this “Tattoos for the Maimed and Handicapped” post on the “Bizarre Stuff” blog; the first photo  is of two mastectomy tattoos. Mastectomy as “maiming”? Mastectomy as “handicap”? The blog enthusiastically invites the voyeuristic gaze of the freak show audience, wide eyed, rubbernecked, finger-pointing, delighted and appalled; I can practically hear it:

Cancer, cancer everywhere and not thing to think.

I have much more to say, but I think this post has reached an appropriate length. Keep posted, and I will post more.

11 August 2009: my worst self

Finally the sun attempts to break through this cloud cover. I’ve been feeling as if I’ve been trapped in some horrible globe with an unreal atmosphere. And all the time there is this tension between us, everything so diseased, so unwell. Nothing is lonelier than lying beside him in bed crying while he does nothing, says nothing. Silence. Nothing lonelier, of course, but for actually being alone–imagining that dreaded future certainty, the day he puts me on a plane.

Sun’s gone again. What does it matter? I am so regretful; how can I be so regretful at this age, so prematurely aged? I want to go back to Vassar from the start and live the last seven years of my life over again, without being so simperingly hateful to myself.

Maybe I make it all worse in my imagination than it actually is. This dreadful waiting, this sick desperation.

If I could be granted any wish right now I could not say what it is I want. There is no one thing that could possibly supply remedy to this restlessness and self-hatred. What I want, at the bottom of it all I suppose, is to exchange this self for another. To be motivated and inspired and optimistic, to feel something other than this nothing, this gnawing awful emptiness. And here again is the question I perpetually ask: how do you become someone other than your sad, sick self?

A thought exercise, perhaps; a “visualization.” (As when I pretended my utmost to imagine that communion wine would cure me–yes, how well that worked). That the removal of my breast will be in fact the removal of the worst of me, the insidious negative energy which is itself a cancer–or, as some would have, the cause of it. The tumor a manifestation, metaphorically if not literally, of my worst self.

How I wish it could be that simple. But to imagine oneself created anew after surgery’s as superficial, after all, as figuring a new haircut creates you a new personality. I’m afraid I’ll only change if I can persuade them to schedule me a lobotomy alongside my mastectomy.

Mastectomy. A horrible word; a word for shrivelled women who have no claim on life.

–meant facetiously, of course–because what claim have I?

All this writing coinciding with the sun’s tentative emergence. A pathetic fallacy, that I could write the sun out of the sky.

What is wrong with me? My slow mind, my utter numbness, my self-created tragedy. I feel the impetus to “make the most of” the time before the awful operation, but have no idea with what to fill it that would possibly appease or distract me. So time creeps by anyway, dully, lacking any meaning, and disappoints me with its emptiness, its ordinariness.

Is it a function of depression, which may possibly pass, to feel/fear you have no real thoughts or emotions–your mind a mire, your humanity barren? Or is this the way I actually am, what I have become?

I say I love him, because I am sure that somewhere, in the recesses of myself, I do. Still, it’s a wholly intellectual utterance, a statement of fact. When I am like this, in this self-enforced slough of despond, I love no one. All I feel is a dulled, subtle sense of alarm at my own lack of feeling. The numbness allows me to behave shamefully; I feel no shame in it.

How did I become a person so cripplingly lacking in confidence, so over-endowed with a system of self-defense as to mistrust and shut out almost all forms of human comfort and interaction? Can it all really be bred of the small tragedies of junior high school? As much as I try to reason and intellectualize it away, I cannot escape my own paranoia over the world’s wide-ranging conspiracy against me. The world is made a middle school lunchroom, populated by mockers. I must prove myself better than this, but all the evidence is imagined.

I almost see the upcoming week in the hospital as a kind of horrible experiment–granted all this time to be shut in with myself, to burrow around inside my mind and discover what’s to find there. The worst thing, of course, would be nothing–to stare at the sterile walls and ceiling and remain painfully aware of each hour’s passing.

Tomorrow afternoon I find out the results of the biopsy, and whether or not this nightmare will be prolonged.

10 August 2009: Choice

Terrible foreboding and loneliness. The two of us in this house together and nothing but discomfort between us. I wish I could feel warmth, comfort, closeness. All outward signs are there: he takes me to the hospital, makes my meals, says he wants to “be there” for me. The essential difference, it seems to me–being “there for” me versus being “there with” me. Wanting to be with me–not as a fulfillment of some duty, some cause of martyrdom.

And I’m anxious and defensive, bitter and easily upset. Recovering from the biopsy, the awful pain and ache and itch of the stitches and bandages. I don’t know how I can possibly cope with the “real” surgery when this small thing unnerves me so.

Spent yesterday restless–alternately working my way through Shakespeare’s comedies and nodding off to sleep. I sleep so easily these days, so often, so suddenly and so long, a series of deaths.

I spent more time trawling the internet for cancer-related websites, watched a woman’s hair regrow in time lapse from chemo–still no idea what is happening with my own. The search term “mastectomy support” yielded mostly information related to lingerie and swimsuits. “You may feel an essential part of your femininity is missing”–why femininity, merely, specifically? Why always the emphasis on gender or sexuality when it is an organ too, and aesthetically, functionally, a part of oneself, and not only one’s sexual self? The comfort is meant to be that, externally, socially, “no one will know.” That you can cover up your cancer, your surgery scars, like the most shameful parts of yourself. As Audre Lorde claims, a near-conspiracy to hide these women, make us indistinguishable to one another. And the emphasis placed not on prevention or recovery or cure but on reconstruction–to be attractive to men.

I’m ashamed by my inability to cope, sickened by my own appearance. How do you make a change in your essential attitude to and response to adversity? Is a change of such magnitude even possible? I don’t know how you start but by pretending, and hoping that your invented persona takes over. It’s the only way to execute a choice over your attitude. My response to most things in the hospital has been utter despair, bursting into tears. To not do that would be to actively deny my natural response–and hope that enough instances of ‘acting’ calm would eventually translate into ‘being’ calm.

But still I am on this course I have not chartered, and over which I have no choice. Or else, the only choice is to allow myself to die, which is no choice.

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.”

2 August 2009: 31,000 feet

Taking off from Cleveland as the red sun dips in the sky. From the air the network of streets and trees, ponds and houses seems delicate and deliberate. So many blue swimming pools.

My hair is falling out again. To distract myself I try to count the number of round trips I’ve made across the Atlantic–Oxford, Munich. Christmases, P’s funeral.

The route from Cleveland crosses Lakes Erie and Ontario, Quebec, the Atlantic Ocean, Ireland. And ‘home.’

Sentinel node biopsy on the 6th, Thursday. Mastectomy 8 days later, the 14th, a Friday. None of this is right, to write these words. To feel the lump, to say, to think, ‘cancer.’ I hate the sight of myself in that bathroom mirror, in front of which I’d pinch myself, a decade ago, wanting to be as thin as the models in Seventeen. Now sickened again by my soft white flesh, my patchy fuzzy head, my small and temporary breast.

We’re following the shoreline. The altitude and sunset render everything out of focus. It’s a wash of colour like a Rothko canvas and the moon looms clearly but for one fuzzed edge, mysterious, out of place.

I look down and see the unmistakable shape of Presque Isle, realize we are flying right over Erie, right over my home. Remember looking longingly at jet trails from the backyard as a child and wishing I were on ‘that plane,’ wherever it was going. And now, how much I’d give to feel safe, not to have to be doing this. A mix of dread and denial.

31,000 feet. Turbulence expected. The lake beneath. Near Buffalo, where I was born a quarter century ago.

This feeling like nothing I’ve ever experienced. Terrible fear and no way to prepare. R. says whatever is in your mind is worse than the actual experience will be. What does she know? She had a small lump removed, and it was benign.

I am sick in so many ways. The cancer, and the sickness of the chemotherapy. Of ineffectual treatment. Most recently of a virus, a sore throat and runny nose and nausea. And the terror, and the terrible malaise.

K. on the other side of the ocean. A comfort, but not to keep. A terrible loneliness is mine instead.

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.”
+
“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…

18 June 2009: the worst possible outcome

I had prepared myself for the worst possible news but still not quite expected it–mastectomy, or a waiting list for one at least. A terrible uncertainty, weeks or months of waiting for worse news. For the moment, waititing to see the Oz-like Dr. S. on Monday, who cancelled last week’s chemo without a word to the surgeon, then upom speaking with her apparently agreed to sanction one or two more sessions of Taxotere while I wait for the mastectomy. I over overloaded with information from the surgeon that I’d expected I should have known before choosing to begin chemo–for instance, that a lumpectomy was never actually a viable option, with a 50% chance of local recurrence in a lifetime. Also, that they cannot know whether the cancer has spread to my lymph nodes until surgery. So I must wait for an appointment for a sentinel node biopsy–which isn’t even necessarily accurate–and an additional week for its results. And I cannot even begin to allow myself to imagine the worst possible outcome for that, even at the disastrous course I’ve already set.

Alternating disbelief and bitterness. I cannot concentrate on anything–anger and self-pity and ugliness. Unable to plan for, focus on, commit to anything–not with all this doubt and fear and ignorance and uncertainty surrounding me. If I felt I were recovering–but will I ever feel I am recovering, or constantly fear its ugly, dreadful presence in me?

30 May 2009: the Disease

Tired of The Disease’s distasteful interruption to my life. A coping mechanism, I suppose, to view it as a nuisance. Trying to quell the terror of the possibility of this new drug’s being just as ineffective as the last was. Nothing to do but wait–for that date, the next appointment, 17 June. I’m restless, uneasy; I don’t know how to approach the time til then. Yet I don’t have to “approach” it at all, I suppose–it will approach me, overtake me, as swiftly as the rest of it has.

I’m desperate to stay in the warmth of this moment, this memory, and without all the underlying anxiety–a still, hot Saturday with my bare feet in the garden grass–how could something like surgery, like death, be as real as this?

Mostly it’s the wistfulness of wishing this were ‘really’ my home, my life, that I could be cemented into it somehow without the feeling of wandering wraith-like through other people’s lives, the ghostly uncomfortableness knowing none of this belongs to me, nor do I deserve it.

My father has boked a ticket–four days I’ll see him, after an absence of years. His voice on the phone is tinged with desperation and worry. Both of us helpless, not knowing what to say to one another. The strange, enduring, inarticulate & inexplicable love.

I continue to exist with my imagined life of the mind while my real world recedes, its borders drawn in. I imagine expansion, and how wonderful it would be to have the money and ability to travel, as if, should I go far enough–or far enough away from my daily reality–I might be able to escape it.

How disgusting that news of more chemo would be a blessing. God, I am terrified of going into that room in two and a half weeks and being met with that assortment of chalk-eyed people.

I’ve become accustomed–appointments, pill-taking, exhaustion. The latest nurse who prodded my arms after asked, “How was the cannulation?”

“Great,”I said, and meant it. A relief not to have needed multiple needle pricks, to the point at which it was almost a pleasure. I’m at the point of becoming another one of those doe-eyed women in the ward, bored but unfazed by it all, allowing it to happen because there’s not other choice–realizing your own powerlessness, your insignificance in the system.

And I’d be happy with that, too, truly–all of the hospital bullshit–could I be assured this treatment were treating the disease. I wish I could perceive a difference, not constantly feel it, hard as a peach pit, cruel and unmoving.

If there is no just reason for having gotten cancer in the first place, is there any just reason I should recover without pain or even inconvenience? Most of me refutes entirely the possibility of a mastectomy at twenty-four–but what force will prevent it, not having protected me in the first place? (I cringe at my blasphemy–but it isn’t exactly a doubt of God, but rather the realization that any sort of Calvinistic predestination is not under my direction or at my discretion).

I get embittered by old women. Walking to East Hendred this morning I momentarily hated her, a grey-haired stranger in an overcoat, hands clasping Cadbury’s chocoaltes in their purple metallic wrappers. An overcoat! What right had she, I wondered, to live so long? And of course I was immediately ashamed of myself; God knows what she’s been through. What kind of discretion dictates existence? What sort of sick insistent logic might I apply?

Apocolyptic dreams last night, blood-red streets and starvation. Something about a cult concerning Jade Goody. And Anne Frank preparing to hide in an attic.

Waking knowing what the end would be; feeling cheated.

The Metaphor of Mastectomy, “the past sad year’s legacy”

I had my mastectomy on August 14, and was discharged from the hospital on August 22, two days before my twenty-fifth birthday.

I tried to think of the removal of my breast not as the removal of my breast but the removal of my cancer, and, further, a kind of metaphorical or mythological removal of everything destructive and wrong in me.

And I thought of this poem. Here, the speaker is reflecting on something much more subtle and beautiful than the trauma of invasive surgery (the landing of a butterfly). Yet the sentiment, I think, remains the same:

“…I had a weird
sense of having been given a gift
on my birthday, something to uplift
me for the coming year, drawing me out
of present sorrows where pain and doubt
had reigned as the past sad year’s legacy
of loss, until this spring day when my Psyche
emerged in a rebirth from what seemed
a death but was only a stage, a dream
from which she awoke and waking me–
in turn–made of us both a mythology.
My last notebook entry, where she came to rest,
reads simply: ‘I have never felt so blessed.'”

-Paul Kane, “Psyche”

18 april 2009: the worst of it

The worst of it. Great Lakes Loans contacting me repeatedly re: my account delinquency. Students contacting me to blame me for their poor reports. And then sitting at the dinner table last night for a half-hour discussion of cosmetic breast surgeries. Me with a looming mastectomy, and she saying she’d quite like a boob job. And I’ve been holed up here in their dining room since, having left the table in tears. And no one understanding why.