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.]

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.

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

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?

still looks like cancer: or, reality bites

A confession:

I really love this movie.

I used to so adore and identify with Lelaina (Winona Ryder) and her angsty smart girl Big Gulp post-college existence. But now it’s Vickie (Janeane Garofolo) with whom I identify, or this part of her character anyway:

“It’s like I’m on Melrose Place and I’m the AIDS character and I teach everyone it’s all right to talk to me or touch me and then I die and everyone goes to my funeral wearing halter-tops and chokers.”

Substitute something vaguely 21st century for the mid-90s cultural references and cancer for AIDS and this is so apt. It’s what I feel I’ve become to most everyone I know: the “cancer character.” People who had no interest or investment in me suddenly came out of the woodwork when they heard I had cancer–even my “best” friends, whom I’d emailed a week previously with good news about my Ph.D; I heard nothing from them until the C-word. Part of it is genuine concern, but, however cynical it seems, I believe there is the thrill of the exotic in it: being able to say ‘My Friend Who Has Cancer.’

Kind of like My Gay Friend, but harder to come by.

And I’m tired of playing the cancer character, even though the whole project of this blog is doing precisely that it’s ok to talk to me, it’s ok to touch me kind of thing. Trying to de-mystify and synthesize the experience of having this disease.

But it’s all a sham, or most of it is anyway. Because what I feel a lot of the time is sheer panic and terror and a loss of the will to live, and you can’t de-mystify or synthesize any of it in handy blog posts for people you don’t even know to peep in on.

So,  

A confession, pt. 2:

No matter how much I tell anyone I’m okay, I am not okay.

None of this is okay.

And I know I’ve been in denial about my level of okay because of the way things have been breaking to the psychological surface.  

Like the other day, after coming across this–Kylie Minogue: Still Looks Like Cancer–I just lost it, and hacked off all the hair I’d regrown in the past several months with a pair of blunt scissors, leaving a sinkful of coarse curls and the remainder a shorn, uneven crop peppered with bald patches.

And it wasn’t that some jackass who writes a stupid celebrity hairstyle blog had really gotten to me, but that I needed a catalyst to act out something irreparably psychologically fucked-up in myself (like cutting your wrists, but with ugliness instead of endorphins), something I have to spend every day repressing and ignoring and pushing away so that I can get out of bed, go to my stupid hateful mindless job, and exist.

Merely exist.

And then the other night I dreamt of the surgery–of the whole thing repeated, for the left side, with a smattering of cruel and unhelpful hospital staff, and awoke so traumatized–not from the dream, but from the reminder that these things had actually happened to me, and I haven’t processed or made peace with them.

I’m getting to feel like Elwood P. Dowd, and my health is like Harvey. I’ve wrestled with reality for twenty-five years, and I’m happy to say I’ve finally won out over it.

I haven’t won yet, but when I sense reality getting ready to rear its ugly head I have to slam it in some drawer or another. Sometimes literally; I found I can’t wear the pajamas I wore when I was in the hospital. Even seeing them, I start to panic. So they’re stuffed to the back of a bottom drawer. I can’t toss them out any more than I can toss out the cancer.

After all, I “still look like cancer.”

But I can’t deal with it.

Because doing so would probably involve turning my life, for whoknowshowlong, into a vortex wherein I would not be able to function–to get up, get dressed, take my Tamoxifen, spend all day moving Microsoft’s data from one place to another, and come home to no one.

So maybe–what’s the point of functioning at all, if that’s what you do?

I think: what would happen if I died now? And the answer is: some of Microsoft’s files would be delayed getting down to archives, and the temp agency would send someone else immediately.

—
This summer, someone asked me, How are you coping? How are you getting up, walking around?

I admitted it was with a generous dose of denial–but then I had England; then I had K.

Now the only answer I can supply besides denial is

I don’t know what else to do

or–I know what else I can do, and am scared to.

Scar

 

 

 

 

 

 

 

 

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

Emily Dickinson

‘not cancer or anything’

So I’m having myself a wee bit of surgery today. That’s something I didn’t think I’d have to say anytime soon. I need to have a lump sliced outta my mouth. As above.

Last week the ear nose & throat man (who, I’ve been told, reads your aura to determine whether or not you have cancer) slid his rough thumb inside my lip and said, “It’s probably just a cyst. It’s not cancer or anything.”

Which is, I realized, exactly what I’ve been wanting someone to say to me for the longest time.  As Woody Allen says, “The most beautiful words in the English language are not ‘I love you,’ but ‘it’s benign.'”

The problem is, I’ve heard that before–“it’s probably not cancer or anything.” And that really didn’t work out so well for me. I don’t deal so well with probablys anymore.

Another biopsy, and hiding for a couple of days with a fat lip and stitches in my face.

I mean,

yr stinkin aura, man.