Category Archives: treatment journal

12 August 2009: the visible universe

Five months exactly since I saw the surgeon for the first time. Leaving the tutorial on To the Lighthouse, meeting K. at Barons Court tube station and walking to the hospital and treating him horribly. That infernal wait in the hallway, having left K. in Main Outpatients. Shifting again and again the uncomfortable plastic seat, staring at my polka dot skirt (I’ve not worn it since; it seems a harbinger). Saying I did not want K. to come in when their first question was “Are you alone?” And why were there so many people in the room? The terror of all those eyes.

I feel foolish even still–how she knew. How the pathologists knew my terrible diagnosis–just a checkbox or a word to them, a name on a test tube, an address I’ve left, an improbable birthdate that made me 24. I wonder if it gave them pause. And I ignorant of it all, not even worried, ignorant and aloof and impatient, teaching Virginia Woolf and being horrible to my boyfriend.

They knew then, as they know now. The grading, the damage it’s done. Ignorant with a blue stain on my breast, stitches uncomfortable but no longer painful under my arm. In a few hours, I’ll know too. And I can barely begin to brace myself for the possibility of bad news, that it’s spread to the lymph nodes, because I am too beaten down by everything else to be able to process it.

This morning I picked up Virginia Woolf’s Writer’s Diary, which I’ve returned to periodically, but not for quite some time. There, it was 1927, and she had just completed To the Lighthouse. A strange, accidental circularity. I hope this week can mark an end point to this strange and terrible piece of pirated time, rather than picking up where I’d left off after the last traumatic prodding and pathology.

In the meantime the cosmos continues irrespective of my private tragedy. Physical perspective is always striking–as when my plane began its descent into London, following the snaking Thames, over Tower Bridge, the London Eye, St. Paul’s, Buckingham Palace, all discernible as a postcard. In between such experiences one always forgets, somehow–one’s self, one’s own life, becomes magnified almost to the point of distortion. And then sometimes the hills or clouds or stars or multitudes of people re-position you. You become barely discernible, even to yourself.

We’re in the midst of the annual Perseid meteor shower, our planet passing through debris from the Swift-Tuttle comet. I think of it continually, wonder how people can sit in offices and houses, drudging through little lives not thinking of it–this spectacular reminder of how we are bound by gravity to this planet, circumnavigating the sun. Last night I saw several–a spectacularly clear sky with close-seeming stars–the Greeks’ stars. Identifying what constellations I could (Cassiopeia of course, my marker–and then Ursas major and minor, Cepheus, Draco, Hercules, Pegasus’ body later in the night), I thought of everyone I have ever loved, under them, and of the whole of human history, having shared them. Very cosmical and astounding all of it, even without the occasional meteor; on seeing one I could not help but gasp and squeal. I couldn’t reconcile the incredible, breathtaking outer world of the visible universe with the inner world of tea and television–couldn’t understand, either, how K. could not be as excited as I–how anyone could not.

But I gather the memory inside my private mind, and love it. So next time the anesthetist says “think of somewhere you’d rather be” as he holds the oppressive plastic mask over my face and prepares me for surgery, it will be there–

Tonight’s the “peak” apparently, but in southern and central England it’s expected to be too cloudy to see–

the visible universe obscured, how Blakean.

[Lymph nodes are normal. She asks for a smile.]

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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.

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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.

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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. Continue reading

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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.

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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

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15 July 2009: the Lord preserves the young ones

The sick cloud of the final chemo—I can hardly write or fathom the date. Barely able to function in this sick, spinning state. Unable to speak coherently to my mother—having caught me in the library, demanding a date to book my return—a suggestion I mooted yesterday as an alternative to my father’s coming here for my surgery, but now I’m unsure as to whether it is an entirely coherent idea and cannot be asked to consider it now. Everything is overwhelming.

Last night: sitting by an open window with lotioned feet, alone, reading de Beauvoir’s Memoirs of a Dutiful Daughter. A brown-red leaf had blown in through the window—made me feel alive and sad.

Yesterday I stumbled across Toru Dutt’s The Diary of Mademoiselle d’Arvers in the Wantage Public Library. Strange and fascinating, this young and sadly fated Indian woman writing French, her character’s deep and desperate fear of death, the clinging to conjectured concepts of marital and maternal love—and the author herself dead of consumption at twenty-one. Everything in the book clings to youth as salvation, yet admits the futility of such thinking.

“I have great faith in youth,” the doctor says—

but Marguerite’s frightful prophetic dreams; the recurring song, the buried bride—all that Ophelia-like sad youth and chastity—and her pathetic question: “The Lord preserves the young ones: he will preserve me, won’t he, my friend?”

All the time having known, from her dream of her husband with “the face of Death,” that “When the trees will flower again, I will no longer be there; I will be lying under the cold grass.”

The Epilogue sadly woven with Psalm CXVI:

I love the Lord, because he has heard
my voice and my supplications.
Because he inclined his ear to me,
therefore I will call on him as long as I live.
The snares of death encompass me;
The pangs of Sheol laid hold on me;
I suffered disress and anguish.
Then I called on the name of the Lord:
‘O Lord, I beseech thee, save my life!’

Gracious is the Lord, and righteous;
our God is merciful.
The Lord preserves the simple;
When I was brought low, he saved me.
Return, O my Soul, to your rest;
for the Lord has dealt bountifully with you.
For thou hast delivered my soul from death,
my eyes from tears,
my feet from stumbling;
I walk before the Lord
in the land of the living…

—& how cruel to have this, a supplication against her own fate. And for me to read it, somehow still believing in the sanctity of youth and its preservation, that beseeching for lifesaving is so tempting—

I walk before the Lord
in the land of the living

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