With my new visual deficits, dangers are coming at me from left field. I make an innocent request for happy, silly dog pics, and THESE are the near-lethal result. I could have burst a tired vessel in my brain! Proceed at your own risk.
Forza!
Gretchen
I hope it's okay if I get a little less careful here, put up fragments where I'd like to complete my thoughts.There's just so much I still want to say. Most urgently right now, I want to give tribute to my teachers. Alive and gone, they are palpably present, the scaffolding holding me together.
There's really only one place to start, with my mom, Cashie Kieckhefer. If you didn't know her personally, her name won't ring any bells, but if you did, it will sound a note both clear and resonant. She was mighty in will but untouched by ambition; she cared nothing for status or power as they're commonly understood but impressed her spirit on every encounter. She knew her own measure exactly and rarely wasted breath or effort. Her reach was literal, defined by her long arms and strong voice. (You always knew where she was at a party, as her volume rose about a decibel per drink.) Anyone who felt her embrace felt her influence.
She loved. That was all. But she loved truly, and that was everything. The German word Schadenfreude has passed into common usage because it describes such a common feeling: the joy we take in others' failures and suffering. The joy we might take in their joys remains so rare that few of us have a name for it, but the Buddhists call it mudita. They recognize it as one of four sublime attitudes we can cultivate toward the world and all those who struggle alongside us. Mom got it as a pretty direct inheritance from her mom, our Gramma, Margaret Parkhill.
When we have the great fortune to be at the receiving end of mudita, we experience it as a borrowed buoyancy, lifting us out of our smallness. The success that might have isolated us in self-admiration is no longer ours alone; the precious moment whose shadow we try to grasp lights a smile in the face of another. Radiant sympathy gives our joys currency, movement, life. We are tempted always toward miserliness, but under a generous touch our own hands may open.
Of course, the center of the world rarely shows up in pictures, but here's a rare sighting. Mom and Gramma are rightmost. San Diego airport, 1980, waiting for the plane that will take us away from our sun-kissed coast to Pittsburgh, PA.
And a semi-random playlist for the small hours of a Tuesday:
1. "The Sisters" from Dubliners by James Joyce, read by Frank McCourt.
2. "We Will Rebuild with Smooth Stones," Balmorhea
3. "Lost Stars," Adam Levine (embarrassing, but whatchyou gonna do? )
4. "Louise," Bonnie Raitt version
5. "Love Came Here," Lhasa de Sela
6. "Wake Me Up," Aloe Blacc
7. "Lay Me Down," The Frames
"Green," Lee Baby Sims
9. "Confutatis" from Mozart's Requiem as sung by Las Rubias del Norte
10. "Jigsaw," Amelia
Forza!
Gretchen
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
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
It's been a long time - I'm weeks overdue on writing the post that was supposed to say, HOORAY! THAT'S IT! ALL DONE!
I've always been a coy mistress of procrastination, so it isn't out of character for me to put off a task I really want to get right, and I had plenty of excuses as always: hormonal hellaciousness when the oophorectomy gave me a hard shove off an estrogen cliff; two incredible weeks with Pete on the big island of Hawaii when my body finally gave my brain a hard talking to and ever so briefly succeeded in shutting it up (I'm spontaneously recovering a mental recording of dear Robin Williams channeling Richard Burton for a Dos Equis ad: "I NEED THIS BEER MORE THAN YOU NEED THIS BEER, AND YET, IF YOU DRINK THIS BEER, IT WILL FUCK YOU UP THE SAME AS IT FUCKS UP ME); the excitement, trepidation, and plain old logistical challenges of returning to training and teaching after nine months of gestating a strange and undeniably damaged but intermittently coherent new self.
But it was superstition mostly. I just didn't feel done. And I was right, damn it. There really are better things than being right.
I am deeply sorry not to be able to deliver this news the old fashioned way, person to person, but at the same time it's a huge relief to be able to deliver it at all when time is very short. It's been a head-spinning couple of days, and I wish I didn't mean that literally. Monday morning, a little less than a week after our return from Hawaii, I had a video conference call with a couple of terrific designers (Forrest and Marla Baer at Cloudyreason) who were resuming collaboration on a revamp of the Bridgetown website that we put on hold last December. They introduced me virtually to their charming frisbee ace of a heeler and helped kick my enthusiasm and confidence into a higher gear - a welcome intervention with classes set to resume this Saturday. But Monday night things took a bad turn when I experienced some sudden and serious visual strangeness.
I initially thought it was a particularly fierce ocular migraine, which I've had in the past and which can sometimes render me temporarily blind, so I didn't get truly frightened until the next morning, when I found that my peripheral vision loss hadn't cleared. And I noticed retrospectively that I'd hit my head on a lot of fast-moving cabinets while in paradise, and tripped many times over our phantom dogs since our return.
Too much preamble, Pete would say.
Tuesday morning we were due at Kaiser West Side for a follow-up with my wonderful OB-GYN, Dr. Mary Knox, an appointment I was looking very hopefully forward to. There's no formula for making patients feel truly cared for, but they might try bottling whatever she's got. I was scared enough by my symptoms to ask Pete if we could head out early and make a detour to the ER first. I was ready to curse myself for a hypochondriac, but I thought I might be having a stroke. An hour later, I understood from the somber faces of everyone testing my vision and reflexes that I wasn't silly to have come in - such a relief to my pride and blow to my hopes! I actually found myself longing to hear that I had a mere bleed in my brain. No such luck. A CT and then an MRI scan of my head revealed a mass about an inch in diameter sitting low in my skull, on the right side near the meeting of the occipital and parietal lobes, presumed to be a metastasis of the original cancer.
My prognosis at that moment appeared very grim indeed, as any metastasis found in the central nervous system almost always presages the discovery of systemic disease. But a wider CAT scan early Wednesday morning (neck to thighs) turned out to be shockingly clean; all indications are that the chemo actually did its job... except in the sanctuary for stray malignancies on the far side of the blood-brain barrier.
The odds that I'll live to eighty (or even fifty) have taken a very big hit, but we have a window of hope. My preternaturally soothing neurosurgeon (see, I just had to get to the point where I could say "my neurosurgeon") discharged me yesterday for a day's reprieve, which we've spent lining up as many legal, financial, and logistical ducks as we've been able (with lots of generous and expert help) to chase into place, leaving all too little time for other vital tasks that don't lend themselves to manic management. (I'm back on steroids and exhausting every doctor, nurse, lawyer, social worker, and notary public who ventures into earshot. Just the one husband, lucky guy.)
In a little more than five hours, we'll head back to the hospital. I'll have an MRI to guide placement of some navigational markers on the back of my skull (there go patches of my newborn, silvered, Buddhist-nun locks, the rest to follow with radiation in another couple of weeks), and Dr. Weinstein will set to his delicate work early in the afternoon. He's confident that he can get the tumor out without damaging much of the surrounding tissue, but the symptoms I'm experiencing now may well become permanent and could worsen or multiply.
These are undeniably problematic, also undeniably fascinating. I finally get to study a brain from the inside, when it is most nakedly exposed through sudden and dramatic alteration. Oliver Sacks are us! (His case study of the colorblind painter concerns a brain lesion close to the area where mine is, where visual signals get interpreted and our view of the world quite artificially constructed and reconstructed ad-hoc.)
In addition to peripheral vision loss (to the left and bottom of my visual field) and some relatively minor sensory deficits (a bit of intermittent numbness in my left limbs and extremities), I have a wildly disorienting symptom that's difficult to describe, which only presented itself yesterday when we returned home: The organization of spaces and objects large and small has been thrown out of whack. I don't have an absolute sense of distortion but rather a feeling of sudden estrangement from settings that have been intimately familiar, irrespective of scale, from the streets where we walk the dogs every day to (this is mightily bizarre) the interiors of our kitchen cabinets. How'd the plates get so big, the gaps between them so yawning? Brain tumors are so very, very interesting. Almost as interesting as they are terrifying.
More preamble. I don't want to sleep, but I should, and I haven't yet said what I most need to say:
I fully intend to survive tomorrow's surgery and emerge with the thread of me maybe a little further frayed but intact. In the highly unlikely event that I do not, it would be a serious bummer for me to have failed to tell all of you who have graced me with your attention and quenched my parched spirits with your interest, affection, and even love how much it pains me to be unable - not finally owing to any lack of time or energy but to a basic, endemic inadequacy - to convey to you my gratitude. But it's big. Really big. And terribly indiscrete.
Thank you.
Hey. I could use a dose of joy and beauty. I need it like I need a hole in my head. How about you? (If you've received this by email, click through to the blog for some sweet and exuberant pics.)
Catch you on the other side. I'll be blushing for my sappy histrionics over here.
Forza!
Gretchen
Many years ago, Peter and I spent some time with an excellent local couples' therapist, Dr. Stephen Cohn, and we often return to a metaphor for healthy partnerships that he gave us then. He noted (like Rilke before him) that couples often feel a strong impulse to merge, to surrender their independence for a fantasy of perfect communion; he likened this to giving up the captaincy of our respective boats. Throughout the time we saw him, Dr. Cohn encouraged us to recognize and protect our essential sovereignty, never to abdicate our navigational responsibilities. "Same lake, different boats," he'd remind us whenever we got anxious over our inevitable conflicts (big and small) in judgment, value, perspective, preference, etc.
Dr. Cohn's choice of image might not have worked for us if we didn't both love water so well. I particularly love water that moves; I find living in a river town the next best thing to living on the coast. Pete doesn't share my bias against containment, as he's been "repairing" to Lake Tahoe all his life. (Granted, it's a big lake, and its deep waters are not still.) He's also more catholic in his enjoyment of different modes of being at or on or in the water. He's a proficient sailor and rower, while I'm only comfortable swimming and paddling. Even that second activity is relatively new to me. We celebrated my getting "doctored" in 2003 with a guided kayaking trip in the San Juan Islands, and I bought a boat a few years after that. Unfortunately, in a flush of "can-do" enthusiasm and a bit of careless portage, I separated my shoulder and lost all early momentum. We did pool our REI dividends to get a second boat five years ago, but between one thing and another - you know how it goes - we've been out maybe ten times.
A sweet man in a serviceable boat under the Tillikum Crossing.
Ten plus two. I really wanted to take advantage of this recent and rather novel sense of physical well-being before another surgery (tomorrow morning) knocks it out of me - I hope very temporarily - and we both wanted to take advantage of these spectacular summer days while they last. Thursday afternoon, we put in at Willamette Park and paddled north (against map gravity but downriver) to admire Portland's newest bridge from below. It's a beauty.
I figured that we should let laziness and inertia work in our favor for once, so I persuaded Pete to leave the boats sitting atop our car for a couple of nights. Yesterday morning we set out again, this time from the other side of the river and in a southerly direction. We glided between the doubled columns that support the Sellwood Bridge(s) old and new, passed mansion-dwelling yogis and golfers whose absence was noted at morning mass, saluted a man on a "hydro-bike" and a bald eagle who flew so low over my head that I could admire his yellow talons and their black blades.
Yes, we definitely need to do this more often.
Forza!
Gretchen
Well, doing our best.
Three weeks ago, I saw my oncologist for what we both hope will be our last consultation for a long while - a full year, if all goes well, though I'm scheduled to meet with someone from the new Survivorship Clinic six months from now. There's evidence that I have some power through my "lifestyle choices" to reduce my risk of recurrence or metastasis, but medically speaking we've done everything we can to eliminate every last rogue cell that might have escaped from my original tumor to sail the salty seas of my body and seek out a new home.
I hadn't known before I read George Johnson's Cancer Chronicles that a cancer's place of origin has a strong bearing on where it might resettle and that this isn't a simple matter of proximity or circulation. As the surgeon Stephen Paget wrote way back in 1889, "When a plant goes to seed, its seeds are carried in all directions. But they can only live and grow if they fall on congenial soil." For reasons biologists still don't fully understand, certain "soils" are more congenial to cancer "seeds," so that a kidney may have as much exposure to malignant cells as the liver, but the liver is much more likely to play host. In a similar vein, muscle sarcomas are quite rare, and still more rare are the carcinomas that successfully metastasize to muscle - the heart resists colonization, while the brain often succumbs.
Beyond this general variation in vulnerability, specific organs and tissues support to greater and lesser degrees the far-flung ambitions of specific cancers. Prostate cancer finds the bones most accommodating, while lung cancer likes the adrenals. If my own cancer reappeared, it would most likely turn up in my lungs, liver, brain, or bones. But we're hoping it won't, and our hope is well-grounded. Having successfully completed the drug regimen Dr. Barnett laid out in February, I've also got the favorable odds she promised me then (though "promise" is a tricky word in this context): seventy of a hundred hypothetical women with my clinical presentation can expect to arrive at the five-year anniversary of their diagnosis without metastasis. The bad news is that, of the remaining thirty, half will likely be dead and the other half soon to follow. These high-grade, triple-negative growths don't mess around. According to Dr. Barnett, the next two years are most critical in revealing whether or not I'm truly cured - if I make it to 2016 without a recurrence, I'll very likely make it to 2019 and beyond.
Of course, I'd really like to avoid developing another cancer, and I remain at moderately heightened risk for melanoma (happy to get an all-clear from a dermatologist two weeks ago) and grave risk for ovarian cancer, but only for another week and a half. A week from Monday, I'll bid my wasted little seed pods an apologetic adieu. If I am in that lucky seventy-percent, and all goes well, August eighteenth could mark the end of this particular medical struggle, though even in the best scenario it would be a tapering sort of an end rather than an abrupt one. I'll still have plenty of physical and psychological de/reconstructing to do. Cancer treatment resembles a labrador puppy only in this: it swings a powerful tail. Best remove delicate objects and feelings to a high shelf or mantel.
The weekend after my appointment with Dr. Barnett, just as Peter and I were beginning to recover our balance, our beloved Barley - who's been with us for all but twelve weeks of her life and all but three months of our nearly thirteen years in Portland - became markedly droopy and unresponsive. I feared that she'd gone suddenly deaf, though in retrospect it seems that she was too much occupied by what was happening inside her to register the sound of her name or other, still less relevant human noises.
We're very fortunate to have two doctors (at one clinic) in whom we gratefully trust: Dr. John Kellogg (or "Old Kellogg," as he prematurely refers to himself) and Dr. Gary Hunt. Over the course of three days, Barley saw them both and allowed herself to be poked and palpated, prodded and scanned. She drooped further but held no grudges. An alarmingly high white blood cell count prompted a series of x-rays, and those x-rays revealed a mass almost as big as a second heart, buried deep in her lungs.
A specialist's opinion was required, the film sent off to a local radiologist. We learned the next morning that the anomaly most probably represented a pulmonary carcinoma, a.k.a. lung cancer. Barley's increasing reluctance to move and her sometimes labored breathing seemed to support this tentative diagnosis, but we couldn't - we can't - be sure. The mass is literally at the heart of her, so cozy with her most vital organs that a biopsy would be traumatic and dangerous even for a young dog, let alone for one two months shy of thirteen. Whether or not it's malignant, it is practically inoperable. A definitive diagnosis might satisfy our curiosity and possibly give us an inkling of what to expect, but it wouldn't lead us to a solution; it wouldn't help us to help her. Neither would it answer the vital questions that remain: how much time is left to us? how much of it joyful?
Old Kellogg's wife, Karen, sent us a lovely email prescribing love and cheeseburgers. Dr. Hunt advised us to have a "contingency plan" for when things went south, and we cancelled a much-anticipated trip to see my sister and her family in Baltimore; we were (and are) determined to see Barley through and to make the most of whatever time we have left with her. We supposed we would count it in days.
HOWEVER, Barley's high WBC count (the inciting incidental) indicated some kind of infectious process. Dr. Hunt guessed that this was likely secondary to the hypothetical carcinoma but put her on antibiotics and asked us to let him or Dr. Kellogg know later in the week whether we saw any significant lifting of spirits. We did! When I spoke with Dr. Kellogg, he emphasized the indeterminacy of the radiologist's report as cause for optimism: a benign mass "could not be ruled out." Additionally, Barley showed none of the anemia or wasting that he would have expected with an advanced cancer. "You'll be bringing her to my funeral," he told me.
That was two weeks ago. Barley swings a little low sometimes, and she's doling out kisses with unusual profligacy, but in the main she's back to her cheerful and sweetly stubborn self, sleek with extra treats and aglow with extra attention. Once she's through her three-week course of antibiotics, we'll sample her blood again and maybe take a hopeful x-ray. Looking to go deeper in hock, mortgage our hearts for a little more time.
Forza!
Gretchen
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
Photo by Douglas Alden via the Los Angeles Times.
I'm a big believer in marking transitions, not least because it gives me a great excuse to make ritual visits to my first home. I was only twelve when we left San Diego, CA for Pittsburgh, PA, but my heart still pumps cool Pacific saltwater, sparkling with pyrite, murky with kelp bits and fish poop. As much as I learned to enjoy the Bay Area over the many years I lived in Oakland (after overcoming an early childhood revulsion for the claustrophobia-inducing concrete canyons of San Francisco), and as easy as I now feel calling Portland "home," the word will always have quotation marks around it everywhere I live beyond a thirty-mile radius of the UCSD campus, even if I never live within that radius again.
I went to grad school in Santa Barbara and have family and friends there and in Pasadena, so I have many good reasons to spend time in the southern end of the golden state, but it's only in the past few years that I've been making regular forays to San Diego itself, returning ever more often as I've come to appreciate the power of the place to restore my spirits. Twenty years ago I found it hard to accept how much the city has altered and grown. I hated (and to be honest still hate) to see the scrub and chaparral eden of my childhood razed to make way for bank buildings and biotech startups, but change has been more to the good further south; no one in the seventies supposed that downtown SD would become a "destination" for anyone but sailors on shore leave. There are now as many tattoo "studios" as "parlors," and Anthony's Star of the Sea has been displaced a hundred times over as the place to celebrate an engagement or milestone birthday (with a bucket of steamed clams).
As unrecognizable as my hometown has become in parts, the place still grounds me in a quasi-electrical as well as a more literal "sand between my toes" sense, and never has that function been more essential than in the last six months. I went down there on my own in February the week before chemo began and just made another visit with Pete, this time in celebration of completing treatment and in recognition of our shared need to replenish stores of energy that had been critically depleted.
Late Tuesday morning, we walked from La Jolla Shores (where the parking is plentiful) north to the magnetic pole of my imagination, defined not by a point but by the line of Scripps Pier where it breaks the superficially gentle plane of sand and water that extends to an airbrushed horizon. In truth, the ocean's shining surface hides a deep and densely inhabited canyon beloved of local biologists, divers, and surfers (because of the way it swells any incoming swell).
It hides other things as well.
During the years that our mom worked in the admissions office of Scripps Institution of Oceanography (where she met Bob on his way to a PhD in marine geophysics), the pier was Megan's and my base of after-school operations, the lifeguards our defacto baby sitters. I thought I knew those waters well, but I can't remember their ever being as crystalline as they were the other day. I couldn't stop marveling to Pete as we trailed a small gaggle of preteens up the beach: "I've never seen it like this!" Apart from the tropical turquoise clarity of the water, another anomaly made a visual riddle: what was that blue-black band that cut across the churn of the breaking waves and divided them from the calmer expanse beyond?
The rule at the pier has always been surfers to the north, swimmers to the south, but when we first arrived the southern side was chock full of boys on boards and the northern side all but deserted. Pete wasn't sure he wanted to swim, so I headed alone into the gentle break.
When I was a kid, we never enjoyed more than a handful of days in any given year when swimming "comfortably" without a wetsuit didn't mean getting numb all over, a state achieved either by painful inches or by a quick but excruciating full-body dunk. When I first experienced truly warm-water ocean swimming - in Oahu's Hanauma Bay when I was twelve - I felt suspended in a dream, and Tuesday's swim had the same fantastical quality. Pete resisted for all of five minutes before joining me out in the swell past the breakers.
That strange black band had melted away from me even as I swam into it, but Pete lingered and solved the mystery: "It's fish! Oh my god, so many fish! When I came through that wave, they made a kind of tornado all around me. Freaky."
We reveled in the beauty of the day and floated for an easy while before returning to shore. Soon after we'd sunned our skin dry, lifeguards ordered all the surfers to move north of the pier. I wanted another swim before we left to catch the World Cup semifinal (between Germany and Brazil - we should have stayed on the beach) and happily waded out into my "old" swimming lane to the south. It's hard to lay even nostalgic claim to any patch of moving water when it's so obviously new at every moment, and on that morning what was familiar contrasted more strongly than usual with what was novel and strange. My second time out, I took a less direct, more drifting approach into the waves. There was no mistaking the heightened liveliness of the water around me: thousands upon countless thousands of small, silver-sided fish - sardines, maybe? I wasn't sure - raced in perfect synchrony on invisible tracks, forging steep-angled loops that shifted, dispersed, and reformed as I moved through them.
I wished I had a mask, but I also felt the return of a well-worn fear, an upwelling of all the questions I used to ask myself back when I was eleven and dangling my pale, bare legs into the hidden below. I wondered now as I'd wondered then, "What's down there today? Do I look like a fish, or maybe two fishes, to something that likes to eat fish?"
Great whites are extremely uncommon in those shallow waters, but they're not unknown. Pete and I had listened a few days earlier to an interview on NPR with a marine biologist celebrating the ongoing recovery of the great white population. He'd described his understanding of the risks of ocean swimming in terms that I'd found resonant and wise, saying that he enters the water as a wilderness, a remarkably benign wilderness, comparatively speaking, but a wilderness all the same. We cannot expect (we'd be fools even to desire) perfect safety in the ocean any more than we can expect it in a dense jungle or the high grasses of a veldt, though we can take comfort in the fact that very few other predators find us at all toothsome or appealing. (Even great whites will usually spit us out.)
Our best precaution against getting accidentally bitten simply requires that we avoid coming between predators and their proper prey. Swimming in the middle of an enormous school of fish is without question a bonehead move for any animal that is effectively naked (and blind) as a shucked oyster. A hundred-and-fifty-pound oyster (extra plump and juicy thanks to five months' worth of steroids).
While musing thus on my own idiocy, I suddenly saw - among thousands of tiny white bellies - a suspiciously large white belly in the clear blue trough of an oncoming wave. Not great-ly large, but indisputably shark-like. I couldn't say for sure whether my eyes or imagination had assembled this momentary vision, but I decided that I’d really rather not risk becoming a dark joke:
“Did you hear about the woman who made it through cancer treatment but two weeks later drowned in a panic when she got grazed by the fin of a harmless little leopard shark?”
“Yeah, that bites. Or not! Ha. Get it? Sorry, that’s probably insensitive.”
“No, man, totally. It’s sad, but kinda funny, too.”
I figured that this scenario was just ridiculous and humiliating enough to tempt an idle god, so I swam back in to shore with a maximum of humility and a minimum of thrashing.
Pete and I didn’t learn the full scope and wonder of what we’d encountered until after our return to Portland, when Bob sent us a video taken by Scripps grad students maybe an hour after we'd left. My imagination might have been overactive, but my eyes had seen true.
How's that for being right back in the thick of life?
Forza!
Gretchen
p.s. Many people have let me know that they've had a hard time commenting here, and after tinkering unsuccessfully with the site settings, I've outsourced the comment protocol to Disqus - I hope that makes it easier for you to share your thoughts, as I'd love to hear from you.
p.p.s. Congrats to Germany - particularly to Mario Goetze for being the one guy who managed (beautifully) to finish an attack on Sunday - and thanks to Argentina for not playing scared! The final wasn't the best of the matches we've seen, but it made a worthy end to a terrific tournament. (Much more satisfying than the cynical brawl that closed the last Cup - so glad Romero blocked the advance of the Dutch.) I only wish I'd watched every match on Univisión - I think I could have learned to speak fluent Spanish, and whatever limitations in vocabulary resulted from a one-month football intensive would have been well-compensated in excitement and musicality!
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
From Camus (I'm reading Robert Zaretsky's fine new biography):
"The misery and greatness of this world: it offers no truths, but only objects for love. Absurdity is king, but love saves us from it."
Forza!
Gretchen
It's coming, dear Sigrid! I promise!
A week ago I met a fella patient for lunch and a walk through Oaks Bottom park. W is a couple of months behind me on a very similar chemo regimen, and we're finding a lot that we share beyond our chemical tribulations. Our conversation rambled, rose and dipped with the shaded path, but there were a couple of questions that kept reappearing in the half-light and calling our attention, like birds flitting near but never giving us a clear view.
You might suspect that cancer patients keep lists of thoughtless and unhelpful things that others say, and I regret to report that your suspicion is entirely justified. We share these mauvais mots, trade them, roll our eyes, and try to laugh. I hope you'll forgive us and understand that it's a mode of self-defense. Many of us feel naked as shucked clams much of the time, and we're strangely most tender to the clumsy touch when it's well-intentioned. (My personal favorite came second-hand from Pete when I was first diagnosed. One of his colleagues responded to the news by saying, "Please tell me she's not bowing to pressure to go the conventional slash and burn route." Yup, that's me, taking the coward's way out through double-mastectomy and chemo! Sorry to disappoint.)
This is not to say that our membership in a clique none of us ever hoped to join can rescue us from our own oafishness and insensitivity - we're more than ordinarily capable of saying stupid, wounding things to anyone who dares to get close. To take but one example, I had sometimes joked to Pete before my diagnosis that I wasn't sure I wanted to outlive our beloved Barley (half dingo, half wombat, all dingbat, now nearly thirteen). When I tried out the same joke post-diagnosis, I struck flint: "That's not okay."
We're capable too, like anyone else, of saying things that are thoughtful and true to our own experience but plain wrong to others with our disease (or maybe more accurately, taking a cue from George Johnson, our disorder, our DNA-deep derangement). This wouldn't be a source of offense if we didn't feel some pressure to mirror each other, to seek solidarity in common responses to superficially common experience. For better and worse, however, many of us do feel that pressure to one degree or another; a desire to take the edge off our isolation can lead us to take the edge off our differences, which can ironically deepen whatever loneliness we feel.
W was talking Monday about one of her own "stupid shit people say" bugaboos: "Cancer is a gift." This we hear primarily from those who've "been there" - anyone without cancer saying such a thing to someone with it would probably (and rightly) get smacked upside the head. It'd be tantamount to marveling, "How great that you grew up poor... went to war... got laid off... lost your sister in a car wreck..." etc. It doesn't sound a lot better coming from someone in the cancer boat; it's too easy to hear it as a dismissal of all that's brutal and horrifying about living (and too often dying) with this derangement, or as a judgement of our individual failures to make lemonade from a bumper crop of lemons.
And yet... and yet...
Even setting aside the many ways I am fortunate in spite of my cancer (many of them in direct spite of it: the insurance, the drugs, the many doctors, nurses, counselors, pharmacists, technicians all enlisted to destroy it without destroying me in the process), even setting aside the many blessings I already had but have come to appreciate more intensely "thanks" to my diagnosis and the immediacy it lends (that's the right word) to this moment (blessings that include you, dear reader), even setting aside the new blessings that many have in mind when they say "cancer is a gift" (unexpected connections, increased clarity of purpose and value, decreased patience for trivia and bullshit), I do experience cancer as a strange bounty; with all that is healthiest and most perverse in me, I welcome it.
Back in February, two weeks into treatment, I took a three-day workshop with Karen Karbo and nine other writers who aspired to "make memoir matter." This could have been a very bad idea but turned out to be a very good one, thanks in great part to Karen's acute sensitivity as a writer and teacher and her willingness to wade with us into the muck (of trying, failing, trying again). More thanks were due to the other students, all equal to her example, a generous and truly constructive group.
I don't remember whether Karen directly posed the question of what writing meant for us, did for us, how it mattered on our end (as opposed to the reader's), but sometime on the second day of the class I found myself delivering a micro-manifesto, finding words for a truth that was only then settling on its roost.
I don't have any religious faith, any conviction that there exists "out there" a power that gives absolute meaning and coherence to life or its absence. I don't believe any power outside ourselves can or will redeem our suffering or the suffering we inflict. I believe that absurdity is essential to our condition; no one and nothing can rescue us here or in the hereafter from the painful paradox of being (in Ernest Becker's vivid phrase) "gods with anuses," glorious and beshitted.
And yet... and yet...
What I told my compatriots in February is that I believe fervently (if never absolutely) in our own powers of small "r" redemption. I believe in our ability to discover order where it accidentally exists, to make meaning where it does not, and to render beauty from chaos and contingency. If I claim "artist" among my identities, it's not in assertion of a talent but in acknowledgement of a reflex. Whatever life throws me, I will try to make use of it. I will study it, poke it, test it between my teeth, heat it in my little crucible and sear my nostrils on the stink it belches up. If I cannot make gold from lead, I will make tin. The making is all. The trying, the essaying, the testing of spirit and dross in infinite combination.
To someone of my peculiar bent, cancer is a gift because it is interesting in itself and exciting in its effects: it gives urgency to every project. Up to six months ago, I sat always on the sidelines of suffering. I have been waiting all my easy life for the other shoe to drop on me for once. It has. I own this little store of dirty metal; it's mine to smelt, mine to work. Rich stuff.
*******
Treatment days are getting to be good enough days that I realize I'll need a new ritual and a new excuse for shameless self-indulgence when they're over... and they're over very soon! I saw my oncologist, Dr. Christine Barnett, last week, and she was bubbling over with excitement, relief, and congratulations - very sweet, even if I couldn't quite meet her at that giddy height. When she told me, "You made it!" I confessed to a superstitious fear around celebrating prematurely. Her rejoinder: "Well, you've made it this far. There's no disputing that!" Yes, I have made it this far, and I'm almost ready to revel in that fact.
Two lunches out in two days: Monday with W, Tuesday (after treatment) alone at the periphery of a small crowd of small people cavorting in the wonderful, cascading fountain in Jamison Square.
What's not to love? "Bosco" (Italian for forest) is the name of the sweet chef's nonno (granddad).
I had intended to walk right through (the square, not the fountain - soggy jeans too steep a price for a moment of whimsical cooling) on my way to a favorite café but had my plans instantly altered by the shock of finding a tiny new cart serving gnocchi (!) from a shaded corner of the square. Gnocchi and nothing but (apart from Mexican coke and Perugina limonata, maybe the only legal requirements to operating a cart in city limits). Pesto or meat sauce? Pesto. Yay.
Yes, Portland is very nearly as ridiculous as Portlandia would have you believe. But there's nothing ridiculous about eating fresh potato dumplings from a cup (compostable, natch) on a sunny day among happy and slippery urchins. Oops - did I say "sunny"? No no no - we don't have sun here! That's just a fancy filter on my camera app.
Taxol #11 of 12 tomorrow. Haven't yet decided where I'll lunch...
Forza!
Gretchen
Photo by Bill Olen.
From Susan Sontag forward, there's been a strong pushback against the use of war metaphors in relation to cancer. It's a good and mostly useful counterweight (I could have said counterforce...) to a perspective grown heavy with overuse. Our preferred metaphors have a strong influence on our favored actions and need to be questioned... until the balance tips, and the questioners need questioning. That's a job I like maybe a little too well.
As intent as I was a couple of weeks ago on fending off Sontag's take-no-prisoners attack on militaristic metaphorizing, I agree with her that it's not generally helpful in the realm of cancer research and researchers. Fighting and understanding are in most instances inimical, and a researcher is much better served by impassioned curiosity than by hostility or triumphalism. George Johnson has delivered an excellent recent critique of the war metaphor in this context and of the (false) promise trumpeted by many researchers to "make cancer history" (MD Anderson's current tag line). His book The Cancer Chronicles gives a more detailed (and fascinating) description of how the genetic errors that can give rise to cancer are the dark side of our adaptability and resilience.
All that said, and my strong pacifist tendencies notwithstanding, I think that fighting metaphors have potentially healthy uses for cancer patients.
Here's one powerful argument in favor of making the metaphorical connection between cancer and war: it encourages a sympathetic connection between patient and soldier. On Monday I listened with better will, understanding, and attention than I'd ever previously mustered (enlisted? take your pick) to the active soldiers and veterans to whom NPR gave much of the day's air time. Their stories moved me more powerfully for their new and unexpected familiarity. Like it or not, G.E. Lessing had it right - mitleid (compassion) begins at home. Our own suffering makes the ground from which we reach out to suffer with others and perhaps to loosen the grip of suffering, if only with the solace of our company.
I've made a partial list of what I feel I partially share with soldiers. Many of these identifications spill out in other directions (e.g. to the aged and disabled), and none is perfect, but that's exactly the point, exactly what metaphors and analogies are for at their most necessary. The slosh of like into unlike rescues us from solitary confinement and its derangements. Here are some of the intersections I recognized between my own recent experience and that of the soldiers I heard on Monday:
Cancer, like war, is not a thing but a process, a terrain. We move through it with broken compasses, trying to read true north from needles that never stop spinning. Crucially, cancer is always a civil war, with all the added insanity that suggests. We have seen the enemy, and it is us; we blow ourselves to bits to keep ourselves together.
But hey! This soldier is nearing the end of a difficult "tour," and she's hopeful that it's her last. Yesterday I made it through #8 of 12 Taxol "infusions." (I'd strongly recommend rooibos over yew-tree the next time you're shopping for herbal tea.) My numbers (blood and liver counts) are less than ideal but holding steady, and side effects haven't yet passed the level of major nuisance. It gets more reasonable all the time to hope that I'll remain within the parameters of acceptable damage for the full course of treatment, and yesterday they let me schedule my final rounds. I loved getting this one into my calendar: 9:30 a.m. on June 24th. It makes a tentative promise that by noon on that day I'll be ready to bid a grateful good-bye to my "unit" and get the hell out of the free-fire zone. Maybe my brother Greg will helicopter me to safety...
In the meantime, I'm playing hausfrau. Behold our new shower curtain (still need to pound in the grommets):
a shining loaf of honeyed buttermilk bread (recipe courtesy of Local Milk):
and Pazzo showing off my new lap blanket:
Forza!
Gretchen
from Dr. Seuss's Bartholomew and the Oobleck, one of the most horrifying books I read as a child. Here's a link to Powell's listing, if you want to inflict it on your own kids.
Treatment day - 7 Taxol down, 5 to go! I've so far only had to delay treatment once for one day when my liver cried foul a couple of weeks ago, and if I stay on schedule I'm due to finish chemo on June 24th, a date that appears tantalizingly close. And while the annoying to alarming side effects continue to mount (heat "surges" - not flashes in my experience - and lots of nose bleeds are the latest bit of fun), Taxol so far remains infinitely easier than AC for me, knock wood!
The light at the end of the tunnel has also gotten brighter with some good news regarding the surgeries that will follow the chemo: "ob-gyn" and "plastics" (maybe that was the field for Benjamin Braddock) apparently play well together, and my surgeons from the two departments have agreed to coordinate their work so that I'll be able to get my ovaries out and my chest more perfectly flattened at roughly the same time. (I don't guess they'll be cutting over each other's shoulder, but I'll only need one visit to the hospital and OR.) Furthermore, my oncologist has given the go-ahead for an August target date, so I have reason to hope that in about three months' time I will be able to make the shift from treatment to recovery mode. Many report that this is a surprisingly difficult shift psychologically (in part because it entails a shift from a highly active to a more passive confrontation with a terrifying threat, in part because one is often flooded by all of the grief, confusion, fear, etc that one has held off from feeling while focused on surviving treatment), but I look forward to it nonetheless.
On my way there, I've been drawing on the behaviorist elements of my dog training experience to make treatment more tolerable. The thing I'm always emphasizing to my students when they're trying to create positive associations with not-so-positive experiences for their animals (like vet visits!) is that the order of things is hugely important. The question to keep in mind is "what predicts what?" and the ideal answer is that "bad predicts good." So if you're trying to teach your dog that nail clipping is wonderful, take things very slowly, but most importantly take care that the presence of the clippers (or the touch of the clippers to the paw, or eventually the clip of a sliver of nail) predicts the arrival of something wonderful, and not the other way around. Pretty much anyone who's been through chemo has personal knowledge of how badly things go wrong when the timing is reversed, and there are lots of dogs who've stopped liking peanut butter and other previously irresistible treats when their owners regularly get them out in anticipation of (or simultaneously with) a painful or fearful situation/stimulus.
For the eight very hard weeks when I was on a dose-dense regimen of Adriamycin and Cytoxan, I wasn't fully prepared for the breadth and depth and sheer strength of the associative ripple effect - not ripples but waves! - those poisons would generate. I should have known better from Mom's experience that the classical conditioning (the establishment of habits of association vs. habits of action, a.k.a. operant conditioning) would extend well beyond the foods I'd ingest, but I didn't expect it to pollute the clothes I was wearing or the cross-stitch pattern I was working on!
The difficulties in managing this sticky, creeping ick - Dr. Seuss's oobleck comes vividly to mind - were heightened at the beginning of treatment, when my reactions and their timing remained unpredictable unknowns. Whereas with most kinds of pain, stimulus and response are usually linked closely in time and easy to connect causally, with nausea the cause and effect are often separated by hours, and everything that lands in between may get caught up in the wide net of disgust.
Once I had a better (and very hard-earned) grasp on this reality, I began to use it to my advantage and to limit the collateral damage more skillfully. I all but banished Pete from the infusion room and played a lot of an iPhone word game to which I'd become uncomfortably addicted. I play a lot less of it now, and I still light up when I see my beautiful husband!
With Taxol the situation changed dramatically, and at the core of that change for the good was the sudden and welcome relief from nausea. (Anytime I complain about my mood swings on steroids, I try to remember the awfulness they're holding at bay!) What's more, my sense of taste has mostly returned. Days when it's dulled are rough for this hedonist, but on days when I have a palate I'm as Pavlovian a creature as my dogs, and treatment is getting to be much less onerous when I follow it consistently with "treats," in my case a good lunch in a favorite neighborhood. (I'm fortunate that the infusion center is in shouting distance of tens of excellent lunch spots!) I'll soon start salivating at the sound of the I.V. alarm. ;-)
Count me a happy animal today.
If you knew her, you might recognize that those are Mom's shoulders (or a slight approximation). They thrill Michelle Anthony, my charming nurse practitioner - I may not be busty anymore, but I remain robust! Thanks, Mom.
Forza!
Gretchen
My latest self-portrait. Is this what they call "soul collage?" Click through for a clip from Harmony Korine's brilliantly strange Mister Lonely. "Chicken breast is nice... and hot!"
I have a dear, beautiful friend whom I shall leave nameless here, the better to protect her from unwelcome attention and from any adverse consequences for public exposure of an act of quiet subversion that she recently perpetrated at her place of employment, Powell's Books. A passionate admirer of Frozen, she saw that someone had placed the tie-in coloring books in a princess-themed display, and this struck her as a gross misidentification of the story's central content. She took it upon herself to move the books where they more properly belonged, to action/adventure.
Of course, these two categories should not be mutually exclusive. The Frozen songwriters, Kristen Anderson-Lopez and Robert Lopez, were recently interviewed by Terry Gross on Fresh Air (a good time and a good listen), and Kristen spoke openly about her ambivalence around the princess genre as commonly mass-manufactured and about her own determination to spin it in new directions. Referring to her collaboration with the movie's writer and co-director, Jennifer Lee, she said, "we're both Park Slope moms, we both went through the '90s, we took the women's-studies courses, and I knew I wouldn't be able to push my kids on the swing at the playground if I had written a movie where the girl wore the puffy dress and was saved not by anything active she did, but by being beautiful enough to be kissed by a prince." When Terry asked whether the couple's two daughters ever played princess, they confessed to owning a full rack (!) of princess dresses, but Kristen went on to say that "our princesses, you know, they shoot arrows, and they do math. And I was always like - we can be like Snow White, the doctor to the African orphans!"
I love that. I love that feminism is getting more supple, less careful, less reverent, more ball- and breast-busting with every generation. Nicholas Kristof published an op-ed a few days ago in response to the Boko Haram kidnapping of nearly 300 Nigerian schoolgirls entitled "What's So Scary About Smart Girls?" and answered his own question by reflecting that educated women are beginning to have more power than they know what to do with, but they're quickly learning how to use it. Those men who define their own sense of power in terms of dominance and subjugation rather than in terms of influence and (pro)creation tend to find this shift violently disorienting and deeply terrifying. Insanely but also predictably, they conceive even enslavement as an act of self-defense - though they just as predictably articulate it as a defense of tradition, principle, God's intent, etc. Much the same dynamic underlies conservative "defense of marriage" acts (verbal, physical, and legal).
I get it - I feel the fear on all sides when listening to my sister Meg describe my four-year-old niece Maya flying on the scooter we gave her at heart-stopping speeds over the course of a Mother's Day run they did last weekend. The rule has always been that she needs to remain in range of sight, and she got a serious talking to at course's end. (It would have been a much more serious talking to if it hadn't been a neighborhood run organized by friends who were waiting at the finish line to corral our runaway action princess. A recent episode of Louie - episode 4 of the new season - gives a beautiful depiction of how little girls' capacity for independent thought and action can traumatize their parents.) When Megan sternly reminded her of the limits she needed to respect for her own safety, Maya took it all in and "got a little sad," as she often does when corrected. Maybe fifteen minutes later, she came back to offer her defense: "Mom, I just really wanted to win." Look out, guys. She could be ruling the world by age eleven.
Generally speaking, women still have a much stronger claim than men to self-defensive postures, but the fact that we're trying not to stay "frozen" in the particular postures adopted by earlier generations should not be perceived as a betrayal of the feminist cause. We're making this up as we go, finding new forms, new attitudes, new languages all the time. Many are awkward hybrids of what's come before, and many are outright failures, but we can't let fear of failure stop us trying. Samuel Beckett still has the best advice for every creative mind and body, female and male: "Fail again. Fail better."
I did some fun failing of my own over the weekend, at an encaustic (hot wax!) painting class with Kelly Williams. She's a terrific teacher for the not-so-timid beginner - if you arrive timid, you won't leave that way. Here's one semi-pleasing result. Who knew I'd develop such a fondness for pink (at least in its power shades)? Maybe Maya.
Another try:
Forza!
Gretchen
p.s. Ha! Over the course of writing this post, I "somehow" forgot all about the fail that inspired it. I learned Thursday that Oregon Humanities will not be including "Living with Wolves, Real and Imagined" in the next catalog for their Conversation Project. The news dealt a moderately crushing blow to my ego but more centrally to my enthusiasm, as I still think it could have been a really good addition. At the same time, the "sorry, not a good fit" didn't arrive as a great surprise given my state of mind at the interview - that rough week had frayed my nerves and scattered my thoughts pretty violently, and my "cannon" must have appeared totally untethered. (When possible, avoid high-stakes encounters on the day following a blood transfusion!) But here's the victory salvaged from disappointment: whereas my typical response in the past would have been to retreat to my den for a protracted bout of wound-licking, I devoted a couple of hours in the days following my rejection to polishing a short piece for consideration in the June issue of their magazine. I sent it in on Monday, and I'll let you know what I hear. Fail again. Fail better.
It's the only thing that worked to mend my spirits today when I crashed hard from Tuesday's treatment (and steroid accompaniment). Teach a man to fish and he'll never go hungry. Teach a woman to use a glue stick and she'll never go entirely mad.
A fairy tale life...
Looking good, Brad! But you've got nothing on Doogie...
And no, I'm not on drugs. Not today. That seems to be the problem.
Five rounds of Taxol down, seven to go.
Forza!
Gretchen
p.s. A lot of the credit (or blame) for inspiring my foray onto the fertile ground of collage (where grotesques grow as rampantly as Himalayan blackberry does here in Portland) goes to my friend W. Davies King, who practices the fine and rigorous art of bibliolage. It must be seen to be believed: www.williamdaviesking.com
Quiet heron photo by Katie Archibald-Woodward.
"All real living is meeting."
- Martin Buber
Matins
Some days crack clean
And careless spill their song o'er every
One
Together and a part,
In benison.
The yolken morning pools in meadows where
My dog invents new words -
"Look! I gallope!" -
And plays with old: "I flushed a flicker! Ha!"
His daft exuberance flings him - naughty boy -
Across the royal heron's shadow. "Oops!"
I call. "Sorry!" Too late,
Too blue her wings
Unfold to lift her out of common care
And company. We rabble can't contain
Our joy to meet her quiet. Holy crap
But she's beautiful! Wow.
Forza!
Gretchen
Photo by NASA's Fred Espenak.
Back in February, when I was enjoying a post-surgery, pre-chemo dose of sun, salt and memory in my hometown, San Diego, I happened in a used-book shop on a copy of Susan Sontag's Illness as Metaphor, something I'd been meaning to read for years. No time like the present, I thought, and hey! it's only eighty-six pages long.
Righteous indignation propelled me through those pages as much as curiosity. Sontag opens by describing illness as a second, shadow citizenship, a kingdom to which we all hold a passport and to which we will all one day be summoned, much as we prefer to dwell in health. She does not pause for breath before she then declares: "My subject is not physical illness itself but the uses of illness as figure or metaphor. My point is that illness is not a metaphor, and that the most truthful way of regarding illness - and the healthiest way of being ill - is the one most purified of, most resistant to, metaphoric thinking." [Emphasis mine, on the words that got my goat by the throat.]
What garbage! I thought. What arrogance and naked presumption! Who are you - I addressed her silver-streaked ghost - to prescribe a thought cleanse to me or to anyone now residing on the "night-side of life"? Get thee gone with that enema bag, Sontag! Purified, my ass.
I thought she couldn't possibly be writing from the benighted state of illness, or she'd show a little humility. She'd have a hard-won appreciation for the idiosyncracies of how each of us best copes (or best fails to cope, because we're all failing all the time, up until we fail for good).
I'm glad I kept reading, since it is a truly pithy bit of writing, fiber-rich and full of interest. That first paragraph should have alerted me to (what I consider) the healthy hypocrisy I found at work throughout: Sontag doesn't much mind her own metaphors, only other people's. I later learned that she had in fact written the book while under treatment for breast cancer, and it made better sense to me as a defensive act. We don't have the luxury of restraint when we're under serious threat; it's too much to ask us to be perfect masters of our fists and feet when we're down and getting kicked in the head. Kicked by the metaphors of the well.
Sontag's real beef is with those on the "day-side" of life whose use of sloppy and dangerously ill-considered metaphors for her condition (and for another wasting disease, tuberculosis) she experiences as figurative and even literal violence, as her doctors' conception of her ailment guides their prescriptions for her treatment, though she never says this aloud.
If she'd made her predicament explicit, I think her book would be more coherent and persuasive. Here's one serious problem with trying to write "objectively" or impersonally about matters in which we are so personally implicated: we risk blinding ourselves and hobbling our arguments. Sontag's natural reluctance to expose herself to further insult pushes her to overgeneralize; she loses the distinction she might have made between the metaphors that we individually (and provisionally) embrace to help us make tolerable sense of intolerable experience and those that others impose on us for their intellectual convenience or professional expedience.
Granted, identities were not so porously, transparently, or fluidly constructed in 1978 as they are now. While most of Sontag's diatribe against metaphor is directed outward, that sentence about "the healthiest way of being ill" speaks to a strong mistrust of what she apparently conceived as a "weakness" for metaphor. She recognized how seductive associations can bait intellectual traps, how even the identifications we choose can harden to steel and have their points turned against us.
She's right about the danger, but her response still revolts me (personally). I've been sufficiently denuded and denied, thank you - I want more metaphor, more play, more mess. (Less purity!) I want to be able to say Monday that I am engaged in a civil war against a wily frenemy well-practiced in guerilla tactics (while my doctors blast away with big guns and napalm, careless of collateral damage), Tuesday that I am seeding a new garden, and Wednesday that I await my transformation into wolf form sometime in late May.
If I took Dr. Sontag at her admonishing word, how would she have shrunk my head early last Tuesday morning, when the birthday I no longer share with my mother arrived just as the earth's rusted shadow eclipsed the moon? For the five hours I spent Wednesday with strangers' blood falling drop by drop into my parched veins (in the middle of a week that began with Passover and ended with Easter), would she have forbidden me thoughts of human sacrifice and resurrection? Or of Lon Chaney (or Griffin Dunne) with the lupine taint now wending inexorably toward his heart?
Maybe she's right that imagining myself as a werewolf isn't the "healthiest" way to have cancer (or - more hopefully - to endure in cancer's absence the horrors of "just in case" treatment). But I'll settle for healthier - my mind won't twiddle its thumbs for long, and I know there are much worse things it could be getting up to if it didn't have metaphors to play with.
Forza!
Gretchen
P.S. Hey! Who better to celebrate when we're making a case for metaphorical fecundity? Happy Birthday, Will! 450 and you're still a playa!
When I went in for my second Taxol treatment today, I learned that my red blood cell counts have taken a steepish dive in the last week... which seems strange when I've experienced that same week as far and away my best in two months and even one of the best of my life so far. At the time that the nurse came over to review my "numbers," I'd been carrying on a text flurry with Pete and Meg (as she and Maya prepared to board a plane to So Cal to visit with our Grandma Di and our favorite ocean), and I told them of this "wacky" disconnect.
"Not wacky at all," responded Megan. "I know why you feel so good. A weekend of flower kisses."
Pete jumped in: "Family counts over cell counts." When I asked whether I could steal that line for a blogpost title, he said sure, but maybe substitute "more than" for "over."
"So that no one mistakes it for a fraction?" I asked.
"Family is indivisible," he replied.
There are vanishingly few who raise punning to an art, but to my alternating delight and chagrin, I married one. He also looks damn good in a hat, which is no small gift at present.
I've got a somewhat unconventional definition of "family," and "indivisibility" makes up a much greater part of that definition than blood does. My assholery and self-absorption quotients (as long as we're talking numbers) have taken a massive uptick since my diagnosis, and they were fairly high to begin with. (Fortunately, the uptick describes an average, and individual data points are wildly scattered.) But I am rich beyond telling in "family" (given and chosen and happened upon) whose capacity for love outruns my capacity to disappoint. Heartfelt thanks to you all.
These times are teaching me astonishing new lessons about true love and the many acts (big and small and even imperceptible) that sustain it. These times include "date night" with my husband and small niece for a small-screen screening of Frozen and a "date afternoon" two days later with my husband and sister and niece and half the four-year-olds of Portland for a big-screen, sing-along screening of Frozen. (Need a dose of joy? Do this. Immuno-compromised? Fuck it. If you're lucky, you'll hear Pete in the back row, lustily singing along with Queen Elsa: "It's time to see what I can do, / To test the limits and break through. / No right, no wrong, no rules for me!!!")
Tomorrow I turn forty-five. Wednesday I get a blood transfusion. But I already got a love transfusion, and I feel fantastic. Not so my poor Pete, who contracted Maya's cold. (I know I should knock wood before I get all smug about my lymphocytes and neutrophils, few but mighty!!)
Wow. Lots of exclamation points in this post. "Let it go!! Let it go!!!!!"
Oh, and on the subject of love that transcends assholery, I want to send out a big kiss and many happy returns to the man who was my Elsa. Happy birthday, Pete Rose!
Forza!
Gretchen
Ed.'s note: This post originally referred to "Princess" Elsa when Queen Elsa is in full possession of her crown and of all rights there pertaining. The text has been emended and we sincerely regret the error.
Drawing by Emmett Kotapish.
Yet another stunning wolf illustration, this one by the eight-year-old son of our good friend Shivaun. Thanks, Emmett!
I wanted to pass along three pieces of excellent news. After hitting a very low point (spirit and stamina-wise) last week and watching my red blood cell counts carry on a serious flirtation with girl-you-need-a-transfusion territory, I rebounded enough over the weekend to stare a new wolf in his great big teeth yesterday (or to dare a few sideways glances, anyway - hey, no fear, no courage, right?).
The prospect of my first Taxol treatment scared me badly. For most people, it's much more tolerable (especially on the weekly regimen that we're trying) than AC, but it can in rare cases be dangerous to deadly. Funnily (?) enough, the problem doesn't lie so much in the (yew-tree-derived) poison itself but in its being neither water nor fat-soluble; the formula currently in wide use delivers the drug on the back of a solvent that can unpredictably trigger immediate and powerful allergic reactions in an unlucky few. (In another few years, patients may not have to take the same gamble. There's a relatively new formulation that binds the drug to albumin - egg protein - but it remains under patent at thousands of dollars per dose.) Because I've had three cases of hives since my diagnosis (and shingles last summer), I was more alert than I might have been to online horror stories of emergency resuscitations and spells in the ICU.
It was reassuring to learn from Bob that Mom never had a problem with the drug, as my allergies have tracked hers pretty closely. They did here, too. Not even the ghost of a reaction, thank goodness. I had some moderate "anticipatory nausea" for the duration of my time in the infusion room (a common Pavlovian phenomenon), but it dissipated almost as soon as I got out. Since then I've experienced no major ill effects, apart from some intense fatigue yesterday afternoon and some equally intense wakefulness beginning at three this morning (This is likely a combination of steroid-mania and an enduring hot flash - very weird to be severely anemic and flushed, as if all my remaining red blood cells got lonely and decided to call a party in my cheeks. I look like a kewpie doll minus the lick of hair.) Early days yet, and the fatigue is pretty well guaranteed to increase, but in quality it's so far much less fearsome than what the AC and its pharmaceutical accompaniments caused - it doesn't have that flu-like, miserably achy edge. We had our first truly warm day of spring yesterday, and this time when I retired with Barley to the couch for an afternoon doze, I opened the window wide and reveled in the sweet breeze and the sounds of birdsong.
The day got better: I learned when I woke that the folks at Oregon Humanities liked my proposal well enough to invite me into the second and final stage of the application process, a half-hour interview with a four-person panel. They'll be calling to schedule it for the end of the week following this one. (Impressive alacrity!) I'm totally delighted and not a little nervous, given that the bar holding my brain on a rickety ride has been locked for months. (I'm thinking of the old wooden roller coaster at Belmont Park in San Diego, minus the ocean views.) I can only hope that I put my best foot forward on paper and that whatever mental steam I can call upon at the interview suffices to carry me through. I just really love the whole project and the prospect of talking wolves.
As if all that weren't enough to celebrate, Meg (my sister), Mike (her husband), and Maya (their youngest, four) fly out late tomorrow for a few days' (low-key) fun and catch-up. A big part of my Taxol fear centered around their visit, and the question of whether there'd be anything left of me to enjoy it. Thus a big part of my feeling so damn good today is my optimism that there will be. Plus the taxes are almost done, and I'm taking myself out to the local bar for some garlic bread, spaghetti, and fútbol. (Madrid plays Borussia Dortmund in the second leg of the Champions League quarterfinals. Hala Alonso! Hala Madrid!)
E forza tutti!
Gretchen
