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.

“Is it your goal to visit every emergency room in the world?”

–or so my father asked me when I admitted I was treated to an ambulance ride across LA on the second night of my vacation.

I have been in emergency rooms in Pennsylvania, and France, and some godforsaken place in upstate New York, and Chicago, and now Los Angeles. And had the EMTs called for me when I passed out in Poughkeepsie.

I “consented,” I guess, to going to the emergency room after I collapsed on the floor of a Mexican restaurant in Redondo Beach, apparently with the blood pressure of a twelve year old. I took an IV, but wouldn’t let them do any bloodwork on me. All I wanted to do was not be in hospital. Ever. Again. And for this experience (ambulance + IV + EKG), I have been fitted with a bill for $1,500. Which is more than my salary for my month working in LA.

And I was so unconcerned about not having health insurance right now, because oh I’m fine, I’m fine, I’m fine…

Just one fucking thing after another, all over the place.

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.

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…

the blog

I’ve been neglectful of the project of this blog lately, something I feel is right and timely. I am anxiously awaiting the day when I stop writing about cancer entirely.

My MRI was, a nurse said as I stood clutching my cell phone in the parking lot of my place of employment, “a good MRI.” Ie, no signs of malignancy in the left breast.

And the MRI was “a good MRI” overall, really; going to the hospital at 9 AM on a Saturday morning was surreal and quiet, near-peaceful. The nurse who put in my IV was kind; she gave me a warm blanket and said I looked scared. But I wasn’t scared of the experience; it is so familiar–the sharp stab of the needle into the inner fold of my elbow, the tug of blood in the tube, the clicks and whirs of the awful machinery (the tubular monstrosity always reminds me of a photograph of myself with my brother, five years old, sitting in front of a shuttle at the Kennedy Space Center ) in which I lie facedown and half-naked, trying to keep still for twenty-five minutes. I am not afraid of your tools, your accoutrements, surroundings. I am only afraid of my own uncontrollable body.

Dear Readers: I shall continue writing here until the end of August, share my journal entries from the treatment, chronicle a complete year. And then 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.

Post MRI state of my life: I am not satisfied, but I am quietened. In this moment, I am not overly desperate for escape. I do not want for anything but to read books, and to be here, and watch in awe as my shattered heart continues to develop its capacity for love.

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.

an abstract insight wakes

Oh my God, I thought: I’ve been happy. Happy like a human being.

And it makes me want to not take my pills. I’m not scheduling any more appointments; I don’t want to set foot inside a fucking hospital. I went to UPMC last month and the cancer ward waiting room unnerved me so much that I cried and cried in the parking garage and hated us all: the dead-eyed doctors, the pathetic bald patients, myself. 

Last night I dreamt I was having chemo–and when I woke it seemed so distant, so disparate from my own experience of being dull and dumb and ordinary here, going to the grocery store and watching television and feeling almost at home in myself, even without alcohol or weed or benzodiazepines. And I feel that spark of wanting again in so many ways. Perhaps I am not entirely resigned. Perhaps I am still electric, alive and insatiable.

Wouldn’t that be something.

At night I recite Auden like a faithless prayer–

Beauty, midnight, vision dies:
Let the winds of dawn that blow
Softly round your dreaming head
Such a day of welcome show
Eye and knocking heart may bless,
Find our mortal world enough;
Noons of dryness find you fed
By the involuntary powers,
Nights of insult let you pass
Watched by every human love.

16 April 2009: Chemo #2

I thought I’d be calmer for the second chemo treatment, which was obviously a gross miscalculation of my character. Upon arrival I was handed a sheet with a mammogram request on it; notes dated 26 March stated: ‘suspicious lesions on L. side.’ None of the nurses or reception staff were able to inform me what this document was and why I’d not been told about it. The first nurse directed me to Radiology rather than Breast Screening. Once at Breast Screening, the reception staff (the school-leaver and the imposing woman with painted eyebrows) tried to tell me I would not be allowed to have the test because I am under 34 — ie, “too young for mammograms.”

I’m too young for cancer. What do you think of that?

New staff every time. More waiting this time, and a new chemo nurse too, who–surpirse!–informed me that from now on, there would be no bed–and no guests. So I sat in the row of old women while she repeatedly failed to find a vein, eventually breaking into tears when the thing slipped began painfully swelling up my whole arm–then the nurse said “Oh shit” and left without explanation. K. was not at all surprised to fine me curtained off in the corner upon his return.

“They had to move me,” I told him groggily, by then under the influence of the anti-anxiety medication. “I made a scene.”

Despite the trauma of the Charing Cross East Bloc Hospital experience, I feel better this time in the aftermath. Not having vomited was even a bit of a disappointment. They gave me anti-emetics this time, and I’m sure my new living environment–green space, a bathtub, a bed I don’t need to climb into with a utility ladder–contributes.

I’m scared more and more. Reading the pamphets and the websites and the statistics terrifies me. “Younger Women and Breast Cancer”: cancer is more aggressive and tends to be less responsive to treatment. There is no “treating” this disease, this wrongness in my body. Even if and while I live, I will always be living with it. Somewhere. This terrifying thing, genetic hatefulness.

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.

Paging Dr. Wilson

Dr. Wilson, you are needed in the real world.

If you saw this week’s episode of House, then you know what I’m on about.

If you don’t, here’s a quick spoiler (because this show is so very unpredictable).

This week Dr. Wilson, the oncologist:

1.) diagnoses cancer recurrence in the lung of a lymphoma patient, tipped off by the fact that the old man seems mildy depressed. Wilson quickly eliminates it, somehow, and sends the man smilingly on his way, and

2.) treats cancer recurrence in the brain of an ex-leukemia patient he’s befriended with extra high dose chemo, which cures the cancer overnight but subsequently destroys the dude’s liver, at which point Dr. W donates a piece of his own liver to save the patient’s life.

Umhello. I’m depressed, also have inexplicable headaches, chronic leg pain…and a mammogram from nine months ago that turned up “suspicious lesions.” I can’t even get an appointment. The only reason I am finally having the damn mammogram re-done–those dumb things I’m supposedly to have every six months–is because my mother is the personal friend of a well-connected OB/GYN.

Dr. Wilson: Why did you make me head of oncology?

 Dr. Cuddy: Because you’re caring…

Would this exchange occur in any hospital in the world outside of prime-time television?

I liked my oncologist in London when I first met him. He was relaxed, calm, reassuring. Eventually I realized that he was so laissez-faire not because there was nothing to worry about, but because what happened to me didn’t matter to him.

 I saw him twice throughout the whole course of my treatment. I don’t think I’ll be hitting him up for a liver.

Shoot, baby, were the world like it is on television, and you could solve all my problems in forty-five minutes, and look damn cute doin it.