“How are you?” *punchface*

   A question a cancer patient can’t answer.

  The problem with providing answers or “updates” is that our conditions are mysteries to us too. We don’t know what’s couched in our bodies, or where, or when it will rear up again. People want to add their own neat  ending to the cancer narrative: “but you’re ok now, right?” Most often meaning: “but you have hair.”  

How am I? I don’t know.  In inexplicable pain, mostly. I might have uterine cancer. My ribs and chest and lungs ache a lot these days; my cancer might have metastasized  and I might die before I’m thirty.  

I also might be fine.

So in response, I just say “fine.”

Recently I had to explain to my boyfriend that chances of recurrance do not decrease by year–that chance of recurrence spikes at year 5 post-treatment. Also that metastasis is The End. Also that when I go to the doctor, it’s to monitor for a second primary cancer in the left breast, not to monitor for metastasis.  That you can’t monitor with blood tests or continual scans. That there’s no benefit to finding it “early.” That you can’t find it “early” anyway. He didn’t know these things. I felt like I’d punched him in the face. I may as well have.

But the reality is too much to bear. It’s easier to believe you’re living in a permanent state of ineffectual hypochondria, and of course you will go on, forever, forever.

There’s no cure for cancer.

If I found out I couldn’t have children, I wouldn’t want to live.

If I knew I was going to die within the next five years, ie. before finishing my Ph.D., what would I do about it? Probably nothing. What could I? But part of me wants to know, because hope can be an embarrassing thing, and I’d rather get it done with.

The New York Times Book Review recently ran a piece on the book The Emperor of all Maladies: A Biography of Cancer by oncologist Siddhartha Mukherjee. Excerpt:

 The oldest surviving description of cancer is written on a papyrus from about 1600 B.C. The hieroglyphics record a probable case of breast cancer: “a bulging tumor . . . like touching a ball of wrappings.” Under “treatment,” the scribe concludes: “none.”

 In Mukherjee’s words: “dying, even more than death, defines the illness.”

The other day I was reaching up on a high pile of books and Elisabeth Kübler-Ross’ On Death and Dying fell down and hit me in the face. I’ve never read it. I feel like I don’t have to now. I know what  dying feels like. Like a punch in the face.

Advertisements

1 Comment

Filed under uncategorized

Dying Young

I shall live to be old, who feared I should die young
    I shall live to be old.
I shall cling to life as the leaves cling to the creaking oak
    In the rustle of the falling snow and the cold.

The other trees let loose their leaves on the air
    In their russet and red,
I have lived long enough to wonder which is best,
    And to envy sometimes the way of the early dead.

Sara Teasdale

Not all die early, dying young–
Maturity of Fate
Is consummated equally
In Ages, or a Night–

A Hoary Boy, I’ve known to drop
Whole statured — by the side
Of Junior of Fourscore–’twas Act
Not Period–that died.

Emily Dickinson

Leave a comment

Filed under uncategorized

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.

1 Comment

Filed under uncategorized

Overdue update, & encountering cancer

This is largely what I saw the first time I encountered cancer:

I was wearing this absurdly cheerful polka-dot skirt the day I went for my biopsy results and was informed I had a Stage 2, Grade 2 breast cancer.  I was looking at my lap, my feet, the sterile linoleum floor, trying not to throw up–shocked and strangely interested in the intense sickness I felt, the visceral nature of my response.

Contrary to appearances–as well as what I said here–I am not, after all, planning on discontinuing the writing of this blog.

Firstly, I’ve been waylaid in my attentiveness to the project of posting the journal entries from my treatment, having reached no satisfying conclusion to this narrative.

But secondly, and more to the point, there is no satisfying conclusion to this narrative. In April I said, “I am anxiously awaiting the day when I stop writing about cancer entirely” — that “I do not want write this blog any longer. Or, not until the next time I encounter cancer, which I can only hope will be never.”

Yet I am constantly encountering cancer. It would be hopelessly naive of me to believe I could rid this from my life entirely, and move swiftly on to considering only 19th century American literature, as if returning from some awful Oz.

I’ve moved to Michigan now, and am in the dreadful process of trying to transfer my treatment to the University of Michigan Cancer Center. I say “process,” but in actuality I have reached a seeming impossible impasse with them, as I cannot get in touch with the hospital in London to locate slides and films which may longer exist in the first place. They will not admit me as a patient without them. So, right now, I am nobody’s patient. In a way I like the feeling of that–no hospitals on the horizon–except that constant patient-status for the rest of my life is absolutely essential.

Further to the persistent problem of pelvic pain, I had an ultrasound awhile ago (I didn’t realize until I got into the examining room that this was a transvaginal ultrasound, all in all a rather absurd procedure wherein they put a lubricated condom on a big fat wand and basically, well, fuck you with it). Last week I got a call from the physician’s assistant reporting no major abnormalities, but the gynecologist advised a uterine biopsy to rule out the possibility of the uterine cancer which could be a side effect of Tamoxifen.

I declined the invitation, as attractive as it sounded. I absolutely cannot deal with the thought of a biopsy right now. Moreover, the whole idea is rendered completely hypothetical, as I DON”T HAVE ANY DOCTORS HERE.

Back on the subject of the polka-dot skirt: I’ve had a kind of superstition about that skirt since; I can’t look at it without hearing “cancer,” hearing it applied to me. But I wore it today to the orientation meeting for my Ph.D. I’m terrified of this undertaking now, in the wake of the way the chemo ravaged my brain–the terrible problems with memory and concentration and articulation it’s left me with, which don’t lend at all well to a doctoral degree in literature. But this is what I mean–I encounter cancer & its consequences constantly.

We’re stuck with one another here, it seems.

Leave a comment

Filed under uncategorized

Thank God, thank God, thank God–for now, anyhow

As an update to this:

Leave a comment

Filed under uncategorized

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.]

Leave a comment

Filed under treatment journal

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.

Leave a comment

Filed under treatment journal