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.

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.]

March 12

It’s the one-year anniversary of my diagnosis.

Who could possibly understand the past year? The only one who was with me is gone–a relief for the both of us, I know, in the end. How could you ever look at me and not see me bald and vomiting, breastless in a hospital bed?

I started seeing a counselor; this week she says: “Plan as if you’d live forever, live as if you’d die today.” I missed work for this. I’d rather she subscribe the humanist school of psychology and say nothing, if that’s all she’s got. Honestly. I mean. Do I seem like the kind of person who wants to be spoken to in platitudes?

It’s dire outside. It was then too. I left early from teaching a lesson on To the Lighthouse, having to neglect a student who wanted to meet with me. On my way to the hospital, I was consumed by thinking about her Blake paper.

I wore a polka-dot skirt, my blue raincoat and a beret. I thought: if they tell me I have cancer, they will pity me because I look so cute.

I think of the two of us in the empty hall of the hospital a year ago: it is late, and raining, and we have to walk to the Tube. You put your arms around me and I wonder why I am not crying. It’s nice to have you hold me so sincerely, even in a hospital hall. My only thoughts are of you–my darling, I never want to leave you.

Today I remember someone I once loved who said,

“I am interested in being alive.”

I am interested in being alive.

[So we perished, each alone]

16 March 2009: Post-diagnosis

New notebook now–usually fresh pages coincide with some arbitrary yet hopeful date: the beginning of a year, a country. Now, a diagnosis. The twelfth of March. Breast cancer.

I sat sighing in the hallway of the clinic, the last patient to be seen–cruelly allowing K. to worry in the waiting room. Convinced I was being put through it all–the outpatient appointments, the biopsies–for nothing. For Hecuba. For fibroadenoma. To walk into what I thought was an empty consulting room to find three pairs of eyes (more? Everything bleeds in the memory until there are infinite eyes, all feigning sympathy) fixed pitifully on me. The first question: Are you alone? No. The second: Do you want him with you? Still no, no, why would I want him here, I will break the good news to him with a thumbs-up and a grin and we will go celebrate my continued good health. But then yes. Wanting, selfishly, needing his presence. Her inflection–I will never forget her inflection: “What we’ve found, is a breast–cancer.” That brief pause in which there could have been anything. Any word. Any utterance but that one.

Perhaps it’s denial, but strange, I’ve thought, that this is the worst thing that’s ever happened to me, but not the worst pain. Not worse than lost love. Not worse than disbelief at death. But then, I write this four days into the reality, without comprehending the reality at all.

I find myself forced to make decisions whose consequences I cannot fathom. Agreeing to begin chemo in a week’s time–18 weeks, followed by surgery and radiatio. Or going home for good in two weeks on what was meant to be my visit to Michigan. Or something in between, which was my immediate, and is still my strongest, inclination.

Exhausted by opinions and options. “It’s your decision.” How sick, to be allotted such decisions.

And by ‘anxiety,’ we mean ‘expense.’

In case you missed the controversy sparked yesterday by the “government task force” (can anything sound more Orwellian? who are these people?) over new mammography guidelines, and let’s be honest, I doubt you did: women should start having mammograms at 50, not 40,  and every other year, to reduce ‘anxiety.’ Because the aforementioned anxiety, the possibility of ‘unnecessary biopsies’ &c., for the majority who will not be diagnosed with cancer outweighs the inconvenience of death for the few people who will.

Now, I too can dig my John Stuart Mill, but that sounds like some crazy utilitarian bullshit to me.

 And oh, also, breast self-exams are useless and should not be encouraged.

The age debate got me thinking about the mammograms I had done of my left breast, the ones with USLs: unidentified suspicious lesions (still unidentified and suspicious as of this posting). When I handed my file, with an oncologist-ordered mammogram, over to the lady behind the desk of the breast screening department at Charing Cross, she said:

“You can’t have a mammogram because you’re under thirty-five.”

And I stared at her, bald and incredulous. And I wanted to say:

“Can you apply that logic to the cancer in there?”

—

Three times in the past couple of weeks I have been asked my age, and each time I hesitated. I honestly couldn’t say. Saying “twenty-five” seemed absurd. Because whatever it is you associate with being twenty-five–like having the rest of your life ahead of you, when “the rest of your life” is something long and non-hypothetical–that’s not what I am.

I remember discussing immortality in sixth grade. The teacher asked us, a group of 12-year-olds, what would be the perfect age to spend eternity as.

For some reason, the class consensus was 25.

I wonder what seemed so magical about it. Myself, I’d chosen 10. Maybe even then I had a premonition. Or maybe I was just a strange, precocious pubescent, already nostalgic for my youth.

—

Something else that is strange. During my last checkup, the nurse asked about my Tamoxifen side effects in near baby-talk: “Are you having little hot flashes or anything?”

I’m tired of having my cancer cute-ified because of my age. I’m terrified by what the chemotherapy and the Tamoxifen have done to my body. I hate that I’ve gone through menopause in my twenties. I hate that I haven’t had a period since July, maybe earlier. I’m worried that I’ll never have one again.

 And there’s nothing “little” about my flashes, lady.

—

Re: mammograms, The American Cancer Society and the American College of Obstetricians and Gynecologists are sticking to the earlier recommendation of 40.

Guess they’re not part of the Force.  

(YSC’s response here)

‘cancer cases found after errors’

Ohforfuckssake.

Just when you’ve managed to profess a tiny bit of faith in the medical profession, something like this hits the fan.

I had this recurrent fantasy throughout my treatment that the same would happen, but in reverse. For awhile I even convinced myself that the reason I wasn’t responding to the chemotherapy was because they’d been wrong; I didn’t have cancer at all.

Turns out I just had a very aggressive kind of cancer that was seemingly immune to chemo.

“To be told that you don’t have breast cancer then to be told that you do have breast cancer must be very distressing,” the director of breast screening (he) says.

It must be, indeed. Let’s engage in a thought exercise. Can you imagine it?

Because things like this expose so well the sense of powerlessness that accompanies cancer. How you aren’t even aware that your own body is revolting against you. How you have to secede your ‘self-reliance’ and forfeit control of your body–deliver it entirely into someone else’s hands.

Usually some man’s hands.

I survived the NHS

I think I need to get this printed on a T-shirt and wear it around Western Pennsylvania.

One of the things I am most dreading about my imminent return to the US is having to face the omnipresent Republican propaganda which, in absence of cogent analysis of the issue at hand, somehow makes continual recourse to the following tagline:

“If I lived in England, I’d be dead.”

I lived in England. I got breast cancer. I was treated. On the NHS. And am living to tell about it.