Welcome to my morning

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.

Tamoxifen & pelvic pain

I’ve been in pain for days and days. Google served up this breastcancer.org dicussion thread on Tamoxifen & Pelvic Pain & Pressure. Terrified of endometrial thickening, ovarian cysts, uterine fibroids. And cancer of course.

Won’t be scheduling any more trips to the gynecologist any time soon, however–not even Pap Redux–having been served out of the blue with an OB/GYN bill for $230. I’m on medical assistance and my co-pay at the time of appointment was $1. I don’t know where the bill came from all of a sudden; what is itemized on it is “additional diagnosis.”

And I still don’t know what it is I’ve been diagnosed with.

abnormalities

I thought I was in the all-clear for the moment as far as tests go, but April 30th’s pap smear–I’d assumed hearing nothing for so long was a good thing–apparently turned up abnormalities. This is not the first time this has happened, but it is the first time I have reason to be worried. They ask for a retest in six months. The waiting will never be over, or the worry.

Pelvic pains too, and waiting for my period, perhaps? Having had more or less regular periods since their return six months ago, last month was marked by a light period as predicted, then a hard sudden hemmorhage two weeks later. I don’t know what to expect now. Handy that the possible side effects of Tamoxifen include both irregular periods and uterine cancer, the hallmarks of both being vaginal bleeding.

Holding the gynecologist’s letter in my hand–Your pap results showed signs of cellular abnormalities–I could not escape the sickness and anger and the why me, why now. “I hate my life right now,” I texted–though predictive text first suggested the phrase, “I have my life right now,” which seemed somehow significant. 

I have my life right now.  

I’d like to ride that out awhile.

don’t like mondays

today-

• take Tamoxifen
• vomit Tamoxifen
• go to work

another reason why i love you

Alice, my best friend of yore, sent me this.

“I thought you’d either find it hilarious…or be really offended.”

Hilarious.

“The lady at the post office asked if I was sending it to my mom. She thought she was in on the joke.”

Not many people are in on the joke.

Thanks, Alice.

[This is the girl who, when I told her they were gonna cut my tit off, suggested she could make one for me out of a chicken cutlet.]

I’m going to take it to work…and confuse people. The mug, of course, not the cutlet-tit.

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.

“Sexy Mastectomy”

If I know you, I don’t really care if you read my blog. I mean, please do feel free, but you’re not the reason I write it.

I write for other women with cancer.

And they’re all strangers, because I realized — I don’t know anyone else with cancer.

So I’m always interested to see what search terms lead people here. That’s how I realized a network of breast cancer bloggers existed, and I wasn’t as alone as I felt–by googling things like “latissimus dorsi reconstruction” or “mastectomy and feminism.”

Recently, I noticed somebody found me by searching for “sexy mastectomy.” I still wonder what, exactly, they were hoping to find.

Every breast cancer support book and site I’ve seen offers some half-assed Sex and Intimacy section, and all of it is absurd. One of the very first pamphlets I was handed–on “Young Women and Breast Cancer,” which enraged me because all of the photos were of 40-year-olds, no one who still gets ID’ed buying beer–offered lukewarm suggestions to spice up your chemo-fied sex life, like stripteasing with your headscarf: “Think of it as the dance of the seven veils.”

Or they give up on it altogether, and offer juicy alternatives, such as “join a book club.”  

Now, the Booker shortlist is thrilling, but I’d take getting laid any day of the week.

 People love to ask how you found your lump. And here it is:

Morning looks like this

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)