Calling Kelley Coyne Campoli!

I've been way belated getting back to you, but you're much on my mind. Very early this morning I was awake when I shouldn't have been, paging through some old links that have made me happy in the past, and this one still makes me laugh like a bad bear or a seductive chicken. Like a seductive chicken once made me laugh, I mean. No one has told me (yet) that I laugh like a seductive chicken. But a girl can dream.

For you, my friend, and for anyone else in need of a dose of silliness:

http://ghettohikes.tumblr.com

Ack! Can't seem to make that a link with my mobile app, so I'm adding a bonus to compensate, one amazing result of a "seductive chicken" image search. The NY Times got in trouble with PETA for this one. "Too sexy!" cried the animal lovers, and they were right.

Forza!
Gretchen

Self-gifting (again!)

In hopes that it may help her to be less awkward (if less scintillating) company and a more reliable (if less polished) correspondent, I hereby bestow on one Gretchen Icenogle permission to leave her thoughts (and much else) unfinished.

The weight of everything (the compulsion I often feel to be comprehensive, exhaustive, or at least cogent) can obliterate many delicate somethings (including the fragmentary and frequently contradictory impressions that accumulate without necessarily adding up). These have been some very full weeks. I cannot do them justice; I cannot from this vantage order them into sense or story.

I've taken issue elsewhere with Susan Sontag's overly broad and needlessly harsh (verging on masochistic) interdiction against metaphors in descriptions of mortal (or potentially mortal) illness.My feeling is that their use requires more care in this extreme circumstance, especially from those charged by us or by themselves with the care of ill persons – the plural often gets erased here, and infinite variety along with it, with real and sometimes pernicious consequences for health in its deepest sense, consequences, as Sontag rightly notes, for the agency, dignity, and fundamental well-being of caregivers and receivers alike. It may be ironic (given her argument) or apt (given my beef with that argument) that I find her own overriding metaphor for grave illness a richly illuminating one, that of being given a passport to  a dark country that one had hoped (against all indications) never to visit. But if metaphors are more than ordinarily dangerous in that land, they are potentially saving, too. Or salving, which is no small good.

Peter and I returned a little more than a week ago from a more literal voyage (facilitated by ordinary paper passports) that was full of delights but also full of challenges that sometimes felt gratuitous, almost perfectly redundant to the challenges I now face every day without going anywhere. Disorientation? Check. The discovery that tasks I once found simple are suddenly difficult to impossible? A near-constant awareness of the abyss between thoughts/feelings and their expression? Check. A sudden, steep fall into childlike incompetence and dependency, with all ensuing confusion and embarrassment? Check.

We choose to travel for all kinds of reasons, but a common reason (a reason that has inspired many of my own travels) is a hope that we'll be altered by what we find. Some, of course, are much more powerfully driven by their desire to do the altering, but in either case the law of unintended consequences reigns. Even if the outcome "proves" good (pick your time scale carefully), the process is by definition shocking (more or less enjoyable depending on our appetite for shocks) and almost invariably exhausting. I was already exhausted when we left Portland just after Thanksgiving; when we returned just after New Year's I was thoroughly done in. (Peter, too - poor guy is nursing his second bad cold in a month.

But we made it! We did it! We were certainly ill-advised (or rather, we refused much sane advisement) in setting aside our many fears (we share a particular horror of seizures, and these are a looming threat for me) and our need for rest, in favor of a grand adventure and the chance to spend some of our dear time with some of our dearest people. Indeed, my one big regret about the trip as a whole was that I had too little left in my tank to tack a multi-state road trip onto the end of it. Yo, Virginia, Connecticut, New York, New Jersey, Pennsylvania, Rhode Island! You (and some beloved of your inhabitants) are still on our wish list!! Once/if we're able, we'll be headed your way soon. Same for pretty much the whole darn state of California. Oh, and Washington, Idaho, Utah. Might need to save Minnesota and Nebraska for summer.

Ah, fuck it, let's all meet in New Orleans for Mardi Gras!

More soon, including more pictures...

Forza!
Gretchen

A whole lifetime in a day

Oh, how I miss Robin Williams. For many of us, I think, his presence was so steady and so comforting for all its strangeness (or because of that strangeness) that it was almost familial, and his death has called up for me an echo of the feeling I had for a long time after the loss of my mother and grandmother: "No, he's not gone. He can't be gone. He's just stepped out for a bit."

A friend asked me the other day whether I ever speak with my mother's spirit. I don't. I've never had the sense (though I envy it in my sister) that Mom's right there, listening and ready to lend me guidance. But she does occasionally make precious appearances in my dreams. They're not recurring dreams, strictly speaking (despite being about recurrence). The setting and other incidentals are fluid, but the core situation and the emotional tenor stay much the same: Mom is back, but not for long. She's here on a kind of furlough; she's been granted a special reprieve from the void, and all she wants to do is to hang out with us for a bit. Like I said, the setting changes, but it's most commonly our kitchen back in Lafayette, CA, and she's stirring batter in a bowl or sauce in a pot. We're all sad, of course, that she can't stay for long, but we're also tremendously glad that she's with us again, however briefly.

Time. Strange stuff. I've been losing track of days and dates, not only because I'm a brain patient and almost completely untethered from the working week, but also because my hours are plump to bursting. Moments like grapes and minutes like melons.

A couple of weeks after Robin Williams' suicide, one of our excellent local pizza/beer/movie houses, the Academy, showed a small retrospective of his work, and I went to see a personal favorite, The World According to Garp. (My most favorite favorite is The Fisher King, and I'm glad I saw it again four or five months ago, because I think it would now be unbearably sad.) There's maybe no other book that has had such a profound effect on me as Garp, thanks in part to my first reading it when I was all of ten years old - talk about wading in over one's head! The movie could never have done the novel justice, and it ain't great on the whole, but in many of its parts, in many of its moments, it's pretty wonderful. (Hey, it's got John Lithgow playing Roberta Muldoon, formerly Robert Muldoon, linebacker for the Philadelphia Eagles!) And there's one scene I've kept in mind for thirty-two (!) years, a touchstone with lines that aren't in the book.

It's actually a terrible scene when you know the story, because the shit is about to rain down hard, the maw of the undertoad about to gape wide. But at this fragile moment, Garp the writer/househusband has just spent a long afternoon sword fighting with Roberta and his two sons. He's preparing dinner, and he stops to say, "Sometimes you can have a whole lifetime in a day and not even realize that this is as beautiful as life gets. I had a beautiful life today."

I put that last line on my "senior page" in my high school yearbook, and I turn it over and over in my head now. Since the day not quite four weeks ago when Dr. Phoebe Harvey told me, "We're always wrong. You know it's impossible to say. But six months would be a reasonable estimate," I've had two cats' worth of "whole lifetimes in a day." Here are a few of the strange and beautiful moments that have made them so rich:

Forza!
Gretchen

Medical update: As I noted in an earlier post, I decided against full-brain radiation (the only treatment that can lower my risk of additional brain metastases, but at the cost of immediate cognitive decline and at the risk of horrible cognitive deficits should it buy me some extra future). Not wanting to waste anyone's time, I cancelled my consultation with a sharp and compassionate radiation oncologist, Dr. Christopher Hoffelt, who had talked me through my options by phone when I was in the hospital. Generously (and fortunately), he followed up, calling me at home to offer another mode of treatment, this one much safer because much more targeted and limited. This week I'm undergoing three hour-long radiation sessions over five days, with everything beamed strictly and with great care at the "tumor bed" (i.e., the crater that surgery left in my brain); this will take the risk of a recurrence at that site from 50-80% down to 15-20% but will not reduce much if at all the risk of a metastasis elsewhere in my brain. It's a relatively new approach and not on offer to everyone, but for someone like me with a solitary brain metastasis and a powerful attachment to her own mental powers, it strikes a good balance between risk and potential reward.

Making the most of smallish vices

Like vanity.

Back in April, I tried and failed to hook up with Oregon Humanities' "Conversation Project" with a proposal to talk wolves with the good (and fractious) people of our adopted state. The folks (sorry, contagious Obama-speak) who eventually rejected my application were almost certainly wise not to entrust such a hot potato to these less-than-steady hands, though I do think I might have managed it if I were at full health and strength.

Anyhoo, as someone who hasn't always responded well to frustration and rejection, I was proud even in the moment that I laid disappointment and self-doubt aside to dance a new step in the tough guy tango choreographed by Samuel Beckett: "Ever tried. Ever failed. No matter. Try again. Fail again. Fail better." I sent in a short piece for consideration for their magazine, for a summer issue with the theme "Start."

I forgot to let you all know that they published it, and I have their permission to put it up here. Hope you like it.

From Edmund Dulac's illustrations of Hans Christian Andersen's "The Little Mermaid."

Non-negotiable

Fantasies of transformation flock to the New Year like overwintering birds. We may be thirteen or seventy, and still we home in the dead cold to a bright dream. We may no longer believe in Santa Claus, but our search for fairy godmothers intensifies as the old year wanes. We scour the self-help shelves and page through catalogs fat with promises: New Year. New Look. New You. This time, we think. At midnight the exhausted husk of outworn artifice will finally split, and we will emerge in all the tenderness of truth: our destined selves.

But we should be careful what we wish for. Metamorphosis always exacts a price.

Never in my life have I had as much confidence as I did this year that I would be transformed. On a day in late December when I waited in line at Safeway to buy gauze and rubbing alcohol, I laughed to read the headlines on Marie Claire: “Lose Four Pounds and Six Inches Overnight.” It can be done, I thought. Ask me how.

I didn’t have a fairy godmother, but I did have a diagnosis, insurance, and a handsome young surgeon. He’d drawn my breasts in rough diagram on the paper carapace of the examining table and shown me the angle of the cuts he’d make. Though I’d given up dreaming of radiant re-emergence when I’d discovered the depth of my desire simply to stay alive, my sudden passion for the staus quo would radically alter me.

The catalogs try to sell you a sun-kissed life for the price of a fine slipper or sandal, but Hans Christian Andersen had a better grasp on the true costs of transformation. The witch who offers legs to the little mermaid tells her: “The best you possess is my price for the precious drink. I shall have to put my own blood into it, to make the drink as sharp as a two-edged sword… Put out your little tongue; then I’ll cut it off in payment, and you shall have your magic drink!”

Midway through this newest year, I’m much changed by my encounters with knives and double-edged drinks. My breasts and hair are gone, but they weren’t the best I possess. As long as I keep a tongue in my mouth, I’ll count my bargain a good one.

Forza!
Gretchen

Made it

and doing ridiculously well in the circumstances, thanks to everyone here and all of you out there. More when I or Pete can manage it.

So happy and grateful still to be here.  And still to have a tan.

Totally missed my calling as a game show host. Are you ready for the Showcase Showdown??

Before.

After. (Really, Pete?)

Forza! 

Gretchen

Please don't tell my grandmother

I flirted for a long time before my cancer diagnosis with the idea of getting a tattoo. If you haven't yet taken the plunge, deliberating what you'd get and where you'd get it has some of the same fun and frisson that trying out baby names does for the never-been-pregnant. Fortunately for tattoo flirts like me, Portland is a walking gallery of skin art. I've been adding for years to a mental inventory of images I like for their beauty, wit, or personal import, but I only got serious about getting inked last December.

Facing a double-mastectomy and the question of how I might be forced to revise my ideals of "natural" and "whole," I first assumed (as many do, including many surgeons and physicians) that the answer would include silicone. But Pete and I both found "reconstruction" a depressing prospect. In the best case scenario, I would undergo months' worth of additional surgeries and potentially a lifetime (however long that might be) of discomfort, all for the privilege of carrying around a couple of memorial domes: Here lay my breasts, RIP.

As soon as we gave up looking at San Onofre-style racks and started looking at tattoos, our spirits lifted. I decided I'd take full advantage of the flat canvas that would be left to me and reached out to a local artist, Alice Carrier, whose gorgeous work is primarily inspired by old botanical drawings. She's in extremely high demand and opens her schedule to new bookings only a couple of times a year. Furthermore, she let me know that she likes clients to wait at least a year after major surgery to ensure that the scars and surrounding skin have fully recovered and settled. So I'll need to wait awhile, but some gray morning next spring, I'll be one of those in line outside the doors of Wonderland Tattoo Studio, hoping for a date with Alice.

You might think that a needle-phobic gal like me would have been happy to take as long a break as possible from injections of every kind; you might think it would be nuts for someone who's been getting poisoned for months to run out and welcome a brand-new variety of foreign weirdness into her body. And maybe it was nuts, but the day after my final chemo treatment found me at Scapegoat Tattoo, scheduling a consultation with John M. Wilson. I liked his portfolio, liked him even better when we met. On Friday he showed me the original design he'd created from photos and other bits of inspiration I'd sent, then inscribed it on my skin.

It's still healing and shedding, and I'll be going back to get some darker shading on the tail, but it already feels at home to me. The quotation, which wraps around to my inner bicep (that was the most sensitive and twangy bit for me), comes from Walt Whitman's "Song of Myself." (Astonishingly, we were able to use a font that someone has created to mimic Whitman's script!) The surrounding stanzas read thus:

Long enough have you dream'd contemptible dreams,
Now I wash the gum from your eyes, 
You must habit yourself to the dazzle of the light and of every moment of your life.

Long have you timidly waded holding a plank by the shore, 
 Now I will you to be a bold swimmer,
To jump off in the midst of the sea, rise again, nod to me, shout, and laughingly dash with your hair.

Forza!
Gretchen

Goodbye to all that!

Last Tuesday I received my final infusion of Taxol, and though it's still coursing through me, wreaking havoc with my nerves and sending my liver into a low-level panic, I'm pissing it out as fast as I can. I hope to "progress" soon to the ingestion of friendlier poisons. On Thursday Pete and I celebrated the fifteenth anniversary of our unlikely union (if you hadn't noticed, he was much too handsome and good-hearted for me even before I got kerfuffled), but I couldn't toast his perseverance with anything stronger than steamed milk, alas.

Oh, I do look forward to a good old-fashioned Old Fashioned! Like my mother before me, I'm a Maker's gal, but like her I'll happily drink from the well. When I last tasted alcohol - back in April before my liver swooned - red wine and beer were bitter as rue, while white wine had but one blaring note: GRAPEFRUIT. Not a bad note, only a monotonous one. I needed bourbon to remind me that I still had a palate, a palette, a sleeping world of color on my tongue. Two fingers in one cocktail at a belated birthday dinner delivered a potent dose of nostalgic bliss, but any further indulgence became verboten when my next blood test returned an alanine aminotransferase number almost seven times what it had been. ("Up I goes like a skyrocket!") It slowly descended over my weeks on Taxol but hovered just above the high end of normal when last checked, so I'm giving my liver a bit of a rest. Though it's a workhorse, it gets twitchy when spooked - best not to apply the spurs just now.

Life must be good if I'm bitching about my unslaked thirst for bourbon! And it is - better every day. I had intended to write a happy "All done!" post immediately upon finishing treatment, but the days following that last infusion uncovered deep reserves of exhaustion and inspired a strong inclination toward solitude, away from language. Fortunately for a lover of fútbol, my small but growing collection of expressive grunts, groans, and expletives remains intact - yesterday's match between Mexico and the Netherlands furnished conclusive evidence of this. By contrast, words of ordinary charge still come hard. When trying the other night to describe to a friend the neuropathy that's the worst of my after-effects, I found myself asking, "There's a word for the palms of the feet, isn't there?" I was only a little reassured by her momentary failure to come up with the answer: We got soles, baby!

So my mind and my feet are all uncomfortably tingly and half-asleep, but in the absence of further chemical assault they should gradually return to something like their former state of wakefulness. The best news from here is all in the negative: I won't be going in today for a blood test. I won't be going in tomorrow for chemo. Fan-freaking-tastic.

Forza!
Gretchen

First and last day as a pinup

Posing on the edge.

I had to laugh the other day when I caught sight of a copy of Woman's World while waiting in the check-out line at Safeway. A headline read: "Lose 4 pounds and 6 inches overnight!"

It can be done, I thought. Ask me how.

In about twelve hours, I'll be thrown back to the boyishness of my early youth. If I could get my good knees back in return for what I'll be losing, I'd consider it a good trade. As it is, I do hope to have more spring in my step. (I'll certainly have less bounce.)

Pete and I returned this morning from a brief but restful stay in the "Little Apple," Manzanita. We lucked into a spell of spectacular weather, clear enough that, when we hiked yesterday through a fir forest and deep muck out to Cape Falcon, we could see the breath of migrating gray whales rise in bright plumes near the horizon.

Sweet man on a sweet beach.

We got back (by design) in time to see the Chargers dance with their glass slippers right past the Bengals. This could be their year, it really could.

Surgery is scheduled for 12:45 p.m. tomorrow and could take four hours or more. Please keep me in your thoughts. Pete or I will try to post here tomorrow night to let you know how things go.

Forza!
Gretchen

Like the card says...

One of the people I spoke to when I first received my diagnosis was my (honorary) Uncle Ivan, who lives in a rural New Jersey exurb of NYC. He lost his beautiful, vibrant wife, Lisbeth (my stepdad's cousin), to ovarian cancer and has responded (as anyone who knows him might have predicted) in the years since by ratcheting up the intensity of his (already powerful) commitment to life, to joy, to revelry of the deepest kind (the kind that touches reverence).

(Whatever small sense of restraint I might have possessed around parentheticals has evaporated. But parentheses are pretty cheap and harmless, as indulgences go.)

Once I'd finished delivering my tale of woe to Ivan, I finally asked him how he was, what he'd been up to. He said he'd just seen some Shakespeare the night before. "Twelfth Night?" I asked. "Was it Twelfth Night?" No, it was Much Ado About Nothing at the Public, but he was planning to see Twelfth Night before it closed. Oh, was I jealous. I had missed Mark Rylance's Olivia ten years before, and I would miss it again, alas!

"Well, come on out, then."

"What?"

"Get a plane ticket, tell me the dates. I'll take care of the rest."

So I did - after head measuring, before PET scanning - and he did. And Meg and Mike, my sister and brother-in-law, drove up from Maryland for what turned out to be an unutterably magical weekend with Ivan and his lovely gal, Lucette. (We even fit in lunch with Pete's and my dear friend Shelley, who burns as bright as anyone in NY.)  I give you pictures instead of meager words:

And I give you a taste of Mark Rylance's alluring strangeness. Truly, if you ever get a chance to see him onstage in anything at all, do jump.

A very merry Christmas to you and yours!

Gretchen

p.s. Biggie Smalls, the most adorable deaf dachshund pup ever to ignore my instruction, also sends her enthusiastic Christmas greetings.

On the joys of being unremarkable

I can't in general recommend cancer as a cure for narcissism. On the contrary, if my experience is any indication, all suspicions that one has been singled out by fate and that one deserves special consideration and dispensation from others may be outrageously exaggerated by one's diagnosis. I have been particularly alarmed - no, that's too strong a word in the context of my radical self-absorption. I have been particularly bemused by the recognition that my response to a mysterious, unseen enemy resembles George W.'s in at least one respect: I have decided that shopping is an excellent remedy for fear and helplessness. If I stop spending, the cancer wins!

The sudden absence of external controls or brakes conspires with me in my extravagance. The first time Peter and I bought a couch, fifteen years ago, his caution balanced my impulsivity, so that we took months to settle on a common choice. Wednesday, when I visited a local maker of custom sofas and found a huge and heavily-discounted sectional in my very favorite shade of gray blue (you see? fated), I had the courtesy at least to call Pete to ask his thoughts, but I knew very well that he'd tell me - as he did in fact - "Go for it." The beautiful behemoth (ordered and then discarded by a couple who found it could not negotiate the hard angles of their Victorian home) will be delivered in time for Christmas. Talk about self-gifting!

So I was feeling very special when I received a call later that afternoon from Christine Brown, my (splendid) "cancer care nurse navigator." She had reviewed the results of my PET/CT scan with Dr. Christine Barnett, my (excellent) medical oncologist, and she wanted to read a few things directly from the report: "Cerebrum is symmetrical and unremarkable... The thyroid is unremarkable." Furthermore, "There is no paratracheal, subcarinal, hilar, or lung parenchymal abnormality. Liver, adrenal glands, and pancreas unremarkable. There is no paraaortic, iliac, or inguinal hypermetabolic abnormality." How elating to discover the ho-hum ordinariness of my brain, glands, nodes, and organs!!

Bottom line: apart from a "mildly hypermetabolic focus" around my left ovary, and excepting the tumor itself (which is confirmed to be a fierce and hungry little bastard), the scan appeared clear: "No suspicious FDG-avid abnormality at other sites." This includes the axillary lymph nodes where my doctors had felt some suspicious swelling, an unexpected bit of good news. PET scans measure relative metabolic rates (malignancies consume lots of sugar in their mania for growth) and generally cannot detect cancers smaller than a centimeter. Thus the report doesn't rule out the possibility of microscopic to small incursions outside the breast, BUT now that an ultrasound has returned yet another "unremarkable" verdict on the overactive ovary, there's real reason to hope that we've caught this thing while it remains relatively local and contained.

Hallelujah.

It also means that the path forward is much clearer. Yesterday I met for a pre-op consult with my (remarkable) surgeon, Dr. Chris Lee, and we set a date: January 15th. Even absent the result of my genetic tests, the consensus among my doctors is that I have some strong susceptibility that puts my left (apparently healthy) breast at significant risk for a new cancer. I would really like to avoid going through this again if I can, so I have opted for a double mastectomy. This morning I made a reservation for the weekend before surgery at a lovely inn on the coast at Manzanita, where Pete and I will bid a fond farewell to my good-natured gals. They never meant anyone any harm.

Forza!
Gretchen