Oh Gretchen!

Hello all you decent people, the blogger'd (blog herd?).  This is Pete, Peter, the husband, the "primary bereaved" as I am officially referred to on the Kaiser form - I've never come first in anything, why this?  So you guessed it, that marvelous woman is gone, but oh is she not forgotten.  She touched the head, heart, and guts of so many people, with her beautiful writing, her warmth and generosity, and her irreverent, bawdy sense of humor.

She took the Martin Buber quote "All real living is meeting" (see the "Calling All Elephants: ..." post on the Animal Exuberance side of the blog) to heart, and in these past weeks and months she relished in reaching out to and being touched by so many people, whether old friends, her various health care givers, someone she met on the street or on the virtual sidewalks of the inter webs, or of course us four creatures at home.  She had the pleasure of connecting with so many beasts, human and otherwise, and that meant everything to her.  So thank you, all, for sharing and engaging.  She has taught this here recluse a little of that power and I am trying a bit more each day to follow her example.  Forza! baby.

I regret that it is this post that follows the last, with nothing in between from Gretchen as promised.  She was just too damn busy.  She was certainly burning the candle at both ends, and she was the light of my life and a pain in my ass, but she knew it and knew that I loved her all the more for it.  For those who want a little sense of her over these past weeks I offer a letter I sent out just last week to her people, those few anyway whose email addresses I could gather in haste.  Gretchen died at home, I believe peacefully, a few days later in the wee hours of April 11.  She had her family here and the week before we broke bread, dyed Easter eggs, and toasted a good life with good wine, though she wisely declined to stack wine on top of the morphine.  So that candle has burned down, but its light carries on in all of us.

Share with us if you wish here on the blog your thoughts and memories of Gretchen.

---

April 8, 2015

Hello all,

I am writing to break a long silence, to pry open the mouth of that wolf just a crack and try to speak on Gretchen's behalf, but I am no ventriloquist and you will not be fooled.  Hers is a unique and beautiful voice.

I am more blunt than she and tend to chafe at a long preamble, so here it is.  Gretchen's health has taken a rather rapid turn for the worse in the last two weeks.  She has lost a lot of strength in her legs and can now only stand with a walker.  She seems for the most part to be able to manage the headaches and back pain with the various drugs at her disposal, but there are spells, and of course she is now sleeping often and a bit dopey when not. (I am sleeping less often and also dopey when not).  But she is still so very much Gretchen, and when the fog clears she's got ideas and stuff to do.

The rapidity of her decline was a shock.  The MRI of a month ago, though in no way showing signs of remission, did show that the cancer in her brain was not looking "aggressive", to quote the radiation oncologist.  She held out hope that the copper chelation therapy she was undertaking may be working to stave off the development of the small micro-metastases into full-fledged tumors. And that may be the case, but cancer cells loose and free-floating in the cerebral spinal fluid seemed to be thriving and they do not register well on MRI.  They have traveled to the base of her spine and are coating the nerves there.  They are likely doing the same elsewhere in the spine and in the brain as well as generally fouling up the CSF flow.  She finished a week of radiation to her lower spine last Friday.  We started hospice the same day as, for Gretchen, there really is no further treatment. She does not want to see a hospital again, continues to decline the offers of further radiation to the head, and intrathecal chemotherapy injected into her spinal fluid is definitely off the table.  These are the therapies available and how effective they would be to relieve her symptoms or to forestall the advancement of the disease is questionable and not a risk Gretchen feels worth taking.

But the past month has been a crazy, joy-filled roller coaster ride.  At the end of February we closed the deal on a piece of property in the forested hills west of McMinnville.  A very small cabin in need of much repair on about eight acres at the end of a dirt road seven miles out of town was to be our new home.  As we drove up the last bit of road in our U-Haul, our immediate neighbors greeted us while out walking their three dogs and two goats - warm, friendly, and welcoming people.  (The other thankfully more distant neighbors with the semi-automatic firearms we have not yet been formally introduced to however).  This is country livin'.  We spent the next week enjoying cool morning walks with the dogs with views of the fog-filled valleys below us and afternoons exploring McMinnville's eateries, the plumbing department at Lowes, and the Wilco Farm store (every town should have one!).  Gretchen had begun outfitting the place before we even moved in so right away she had transformed this fairly rough space into a warm and cozy place to camp and we could see how this could become a wonderful little home once I got the water flowing and a stove wired up.  Buckets of fresh, sweet water from the spigot in the yard and a propane burner sized for a National Guard weekend drill kept us in cold and hot water, and bacon.  Greg visited for a week and they traveled up and down the Yamhill valley visiting her favorite ceramics studio, wineries, and bakeries and taquerias in McMinnville and Portland alike.  She was living life balls out (hey it's a steam engine metaphor not an inaccurate anatomical one).  I kept up when I could, but I was deflated by a nasty bug and saved (or misspent) my energies attempting to clean out the cistern and make headway on the long chore list.  (Grandma Di exclaimed how much her mother would have loved that we bought this property as she just loved "woodsy lore".  At times for me it seemed more like woodsy chore.  But what a place to have chores to do.)  Well the same week Greg returned to Budapest Gretchen's "neuropathy of the butt" developed into a more serious weakness in the legs.  One night she is dancing on the deck, a few days later she is having an urgently scheduled MRI and radiation to her spine.

That woman is a trooper.  Always positive throughout this ordeal and keen to make it count for something.  Last week after persevering through the bureaucratic balking of her health care provider she sat for a long interview by a reporter with the Japanese Nippon Television Network who is doing a story on the Death with Dignity law in Oregon.  I urged her to let it go and rest - talking and bright lights were the two most potent causes of the insane headaches she was having.  But no, she had worked too hard getting this into place, and wanted very much to be an advocate for a right she felt was much maligned and misunderstood.  I needed to stay home to await delivery of a hospital bed, but Megan accompanied her to our friend Tracy's art glass studio where the shoot would take place. The eight block drive exhausted her and she quickly fell asleep. The TV crew waited and interviewed Megan and Loren, who just thought she came for lunch!  Gretchen awoke an hour later, commenced to speak carefully and eloquently, as is her wont, for two and a half hours, and then passed out again until we had to fetch her home at 9:30 that evening.  She is a force, and it is very dispiriting to see that force sapped by her disease.  But even still she is positive and generous, more concerned for what an inconvenience she is to us all! I mean really Gretch, give us a f'ing break.

Well if I don't stop editing this email you will never get it.  Just send your good thoughts and prayers for her peace and comfort.  We are all doing our best to keep her comfortable and surrounded by dogs and love, both things never in short supply around Gretchen.

-Peter
 

Lalibela bellissima

Cutest little damn dog - how'd we get so lucky?

February 15, 1998!

Still very much here

Hi, all.

Just an "all good here but nutty and without wifi" sorry excuse for a post. I'm waiting for the results of my most recent MRI and hoping they reflect - as they must, right? - my subjective sense that I am doing bizarrely but undeniably well.

There is, as the expression goes, a shit ton of news to report, and report it I will when I don't have to hunt and peck on my phone. But I give you a teaser below. Also my current theme song, from KT Tunstull's most excellent most recent: Feel It All - Band Jam (Radio Edit)

Forza!
Gretchen

Great clarity from Barry Lopez...

on that question I posed earlier re: what to do with the SAAs who tend to gather in the trees when we're bloodied. This passage comes from the first story, "Apocalypse," in Lopez's collection Resistance:

Her tears, I thought, were over a kind of loss we had talked about in recent weeks, the way the fabric of love scorches, no matter how vigilant we are. The intricate nature of the emotions men and women exchange made the two of us sense our own endangerment when we disagreed; but we had also been speaking of the ephemeral love one can feel toward a complete stranger, for the way they step off a sidewalk or a father hands his daughter her gloves at the door. Bound together in these many ways we are still swept suddenly out of each other's lives, by tides we don't recognize and tides we do. The sensation of loss, the weight of grief, the feeling of being naked to a menace are hard to separate. The fear of an outside force at work makes us reticent in love and suspicious. We identify enemies.

The instruments of discord show up daily in our lives, of course, demanding our attention. The unscrupulous peer, the woman on the make, the purblind enforcer, the self-anointed official and his cronies, people with a craving for confrontation. We are foolish to give any of them what they ask for, and we betray ourselves and anyone toward whom we have ever felt tender by not sending such people immediately on their way.

There's fortification for you. Barry's tonic for emotional health. Drink it down.

Forza!
Gretchen

A beautiful day for a beautiful man

My sweet fella turns 51 today. He's still looking pretty damn fine. The goof.

A happy mix for him and for you all:

• Better Man, Paolo Nutini (the whole album Caustic Love will MAKE YOU MOVE
• Favorite, Neko Case
• Lonely for So Long, Hazmat Modine
• Roll with It, Steve Winwood
• I Want to Take You Higher, Sly and the Family Stone
• I Was Made to Love Her, Stevie Wonder
• Kansas City, The Basement Tapes
• Hallelujah, I Love Her So, Ray Charles
• Manteca, Dizzy Gillespie, remixed by the Funky Lowlives

Forza!
Gretchen

Full catastrophe luxury living

The sorrows rolled in fast and furious with the joys on a  glorious trip south to Meg's and my first and most memory-burnished home (newly alive at every return): the sands between Scripps Pier and Torrey Pines Beach just north of San Diego. Hour by hour, we're swimming out together with other battered but dauntless souls into swells we've got no business trying to surf. We get thrashed on every third wave, but we pick ourselves up, brush the sand from our butt cracks (it's just not dignified, but we deal), then head back into the water. What choice does any of us have? Hugging the shore just doesn't seem a viable option any more.

View fullsize

We saw this little guy just make it into shore (it's a terribly rough winter for the new crop of sea lion pups) and did our best to keep him safe 'til Sea World could come for him. (Different organizations have set jurisdiction over rescues on different stretches of California coastline, and for all its well-exposed faults, SW has saved many fragile lives along its given span.)

He was maybe half the weight he should be, cut loose from Mom, exhausted and nursing a shoulder injury. Poor little dude was caught between the rising tide that he'd just managed to escape and crowds of people who (quite naturally) wanted to approach.

We made a sand cordon, patrolled it, and got intimately acquainted with the best (mostly best) and worst (depressingly worst) of human attitudes toward adorable and terribly stressed creatures. I can get a little fierce when lives are at stake, and not always productive in that fierceness. The words "Your fucking photo op is worth nothing next to this little guy's life" might have been uttered to dubious effect. And the guy who knew what the pup really needed was to be doused with a bucket of sea water (because sea lions are something like dolphins and maybe something like frogs, don't you know) had to leave shaking his head over my stubborn conviction that the best we could do was let him get dry and warm while being unmolested by our "help."

The most astonishing WTF? moment came from a guy in his thirties on a bike who chose to ride pretty much straight at the sleeping pup's head. When Meg tried to tell him he was much too close, he kept course, and yelled back to her (reassuringly, as he must have thought): "It's all good. I'm a biology teacher!" Stunning.

"Sanity is a madness put to good uses."
- George Santayana

Long story short, we bought him a couple of hours' worth of rest before a "do-gooder" harassed him back into the ocean... so he wouldn't fall into the evil hands of the "Blackfish" people (who had eight pups in similar states of distress they were doing their methodical best to attend to). She suggested  to me that we "get a bag" and take him ourselves. TO HER BATHTUB?? OH, how ASSholes do VEX me! (Robin Williams in Richard Burton mode.) It was all I could do not to fucking chase her into the high surf after him. But I somehow restrained myself. We all sent up a collective prayer/hope/plea that the pup mustered the strength to find a quieter piece of beach so that he could eventually be kidnapped by Sea World for a couple of months' worth of herring smoothies and some help for his crunched shoulder.

Forza!
Gretchen

On seeing Richard Mosse's The Enclave

There's a remarkable video installation now on view at the Portland Art Museum - an "embedment" in the horror (ongoing) of civil conflict in the DRC. It's called The Enclave, and I've now been twice, drawn back by its surreal beauty and real power; I think it's rare in leaning into fascination without falling into prurience. If you're in Portland sometime between now and its closing in April and you have forty minutes (or even ten - just drift through) you want to spend in a troubled but dangerously enchanting waking dream - do go.

Way back in 1992, I visited my (now unfortunately but maybe inevitably far-drifted) friend Jamie Metzl in Cambodia, where he was working with the UN to prepare for the first democratic elections since the genocide and Vietnamese occupation. I got to visit Siem Reap and many of the extraordinary temples of Angkor. Riding on the back of a moto "taxi" at high speeds through the jungle was a thrill; walking up a narrow corridor between the mined flanks of the highest hill (with its views of everyone who could be an enemy) was more simply chilling. I had that in mind, too, when I wrote this.

Something There Is That Loves a Hill

For the safekeeping of
Their supple spirits and
The blades of their fresh-sprung bodies,
Let girls and boys grow
No higher than the grasses.

Forza!
Gretchen

Water in the desert

Look on my friends, ye mighty, and despair.
Despair of might itself, stupid with self-love.

Let the mean girls whisper and bray behind their manicured hands;
Let the boys with the wilted asses and the John Wayne pouts
Play with each other in their loud, lonely corner.

Their games are not ours.

What say we let them fuck the hell off, while we conspire quietly together,
Never caring much what we will raise,  only whom.

Yes, my dears, let us touch, but touch lightly.
If we must build, let us build bridges, sills, and doorways;
If we make, let us make invitations.

Come, let's scatter our seed where the weeds already flower.
Let us mend, make way, and step out of the light,
leaving only our selves undone.

The power of humility

I've dug up an old post in honor of the holiday, mostly for the beauty of the above photograph by Tony Fischer.

January 21, 2013

Tonight my husband, Peter, and I are planning to celebrate the birthday of MLK, Jr. and the second inauguration of Barack Obama by going to see Lincoln. We saw it for the first time before Christmas, but I want to see it again now after having finally read Doris Kearns Goodwin's book Team of Rivals. I've heard some critics fault the movie for its narrow focus and the conspicuous gaps it leaves in the "small" story it tells: that of the legislative struggles that culminated in the passage of the 13th Amendment, which abolished slavery from the soon-to-be re-United States. But I think the narrow focus and the gaps are two of the movie's great strengths (just behind a beautiful, bone-graven performance by Daniel Day-Lewis). Unusually for Steven Spielberg (but characteristically for Tony Kushner), this is storytelling with some "negative capability," with an appreciation for (even a relish in) the many mysteries, uncertainties, and doubts that surround the tightest of narratives (whether historical or fictional). Lincoln is a suggestive movie instead of being a (falsely) exhaustive one - whatever its distortions or oversimplifications, it whetted my desire to know more. Kearns Goodwin gave me seven-hundred-fifty-four (fascinating, comical, heart-wrenching) pages' worth of more, and my curiosity is not yet sated. But I am excited to go back and see the film again, now that I have come to know the man a little better.

Also to love him better. Lincoln was no saint, and therein lay his great virtue. What emerges most strongly in Kearns Goodwin's portrayal is Lincoln's profound appreciation for his own limitations and the genius with which he turned those limitations to his personal advantage and to the preservation of the country. He was a faithful student of human frailty in general, but just as faithful a student of the weaknesses and deficits that were peculiar to him. Of course, he also knew his own strengths.

I don't know MLK's complex, embedded story nearly as well as I should (haven't even seen Selma yet) but what little I do know suggests the same paradox, of a very fine dust. Who wants to walk behind (or beside) a leader who hasn't got feet of clay? Not I.

Forza!
Gretchen

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

Calling all angels

There's something I've been meaning to do for a couple of months now, since I realized how much it means to me at this juncture (yup, still here! hanging out at the crossroads!) to let other people know what they've meant to me, and it's become more pressing as I've been forced to admit how unlikely it is that I'll have time even to track them all down, let alone to tell each of them individually how grateful I am (and why) that they touched my life.I can't be persuaded to get on facebook, though I'm grateful to those who have used it to help me reconnect. (Thanks, Margie! Thanks, Ted!) Instead I want to create a page organized by time and place and simply list names (as well as I can remember them). People still google themselves, yes? Maybe they'll find themselves there, or people who make a link between us can let them know they're there. (Many I've lost touch with, while to some I am a near or total stranger - Pete Rose was a case in point, but now we're good buds.)

I don't know whether I'll get to it, or how comprehensive I'll manage to make it if I do, but I can at least state my intention - that might give me a push to make good on it! 

In the same spirit, I've started to do something that feels uncomfortable for its flavor of self-promotion, but that I hope might spread more than my dark and silly musings rippling into the world: dropping my card around town (something I never got into the habit of when I really should have, when I had a business and not just a blog to my name). I don't plan to scatter them willy-nilly but to leave them where some tiny connection has already been made, especially where someone has shown me a gratuitous kindness. If you were led here by a strip of cardstock with the site address and tiny photos of some glorious canines, I want to say, Hey! You've got light in you. Thanks for throwing some my way.

Tonight I left a card with the waitress at Bernie's Southern Bistro, she of the great, kind smile; she who happily substituted whiskey for rum in my mojito (just a half dose, as I need to be careful mixing my drugs these days). Bernie's! Such good food! Amazing prices at happy hour, and – most rarely – a place where they play great music just below the level of human conversation. Go with people you actually like talking to - you can use your inside voice there.

Kindnesses in abundance today. Wish I could have slipped a card into the hand of the man who told me, as I passed in my ocean blue coat, "That color looks good on you, young lady." Forgive the color-tinged generalization, but in my experience no one delivers compliments more gracefully than a black gentleman of a certain age and decorous style, delivers them so they arrive at their intended destination and land lightly. I did thank him with all the grace I could return.

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

All good here!

Hello, everyone. Just a brief note to say that I am well (though with all the ironies now attendant on that word) and to apologize for spooking some of you with my longish silence. No news is truly good news in my case – you can count on me (or Peter) to let you know here if things take a southward turn.

This caesura (thanks, Steve S!) has a happy justification: Pete and I have been crazy busy and on the move! We left Portland on November 29th and spent a few wonderful days with friends and family (the line between them blurs) in Milwaukee and Chicago before winging to Budapest, arriving on the third. The days and nights since have been full of spectacle and fun, almost empty of rest; this morning was the first that I felt back in one piece. I trust that words will return to me soon, but here are a few photos to tide you over in the meantime.

Eggy sheggy dray! (Toasting your health with a bad American accent...)

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.

Vegas?! What the hell are you doing in Vegas?

I've been buying (and even writing!) a lot of cards lately, and I ran across one a few months ago that perfectly captured the sentiment of this moment: "I don't have a bucket list, but my fuck it list gets longer every day." Well, I scratched  a major item off my "fuck it" list today.

I've written in an early post here about my early, impassioned, and enduring admiration for "the Hit King," Pete Rose. It has survived his many public sins;  indeed, his decades-long exile and vilification serve for me as powerful evidence of the inhuman streak of Puritanism that persists in American culture and helps make our public dialogue much more brittle and bitter than it would be if we tolerated mess better, if we were less devoted to principle and more to spirit, or simply to people and other flawed creatures. (Hmm, any more recent examples come to mind? Lord, what a depressing election. The only bright spot is that they've legalized marijuana in Oregon, which should at least make the vitriol and idiocy of our politics slightly more tolerable.) I defy anyone to persuade me that, however flagrantly Pete Rose transgressed against the letter of baseball's laws and through arrogance and bull-headedness dug himself almost to China, he ever damaged the spirit of the game. I defy anyone to show me another player living or dead who embodies more fully the joys of playing itself. C'mon, who's out there who wants to argue this with me? Bring it on!

My main contention re: Rose is that his virtues are all tangled up with his faults in a way that many find hard or impossible to accept, but it's true of all of us to one degree or another, and the degree is probably linked most closely to whether we are living small or large.

Pete Rose continues to live large and to work as diligently as ever. He ought to be hustling on a field somewhere, channeling all his happy hungry animal energy into the nurturance of younger players. Instead you can find him signing autographs and chatting up fans at a memorabilia shop just off the Strip, four and a half hours a day, five or six days a week, most weeks of the year. That's where this pilgrim found him today.

Forza!

Gretchen

My mother's daughter

Sadly, it seems that I'm only interested in front page news these days if it relates to me. (Even Ebola's sway over my imagination owes a lot to the fact that my father works in Nigeria. That country has done a better job than this one in managing the couple of cases it has seen, but try telling that to the oncology nurse after you've given her an affirmative answer to the question: "Have you been in contact in the last twenty-one days with someone traveling from West Africa?" Even after I assured her that Dad is indecently well and currently biking across South Africa, she was justifiably spooked. These are scary times.)

As little as I've been keeping up on current events, the NY Times remains my browser home page, and this morning they posted an invitation for breast cancer stories. Here's the one I told. Most of it will be familiar (even the language in some places) from earlier posts, but it did let me articulate a little more clearly than I have before the uncanny but comforting sense of walking the path that my mom cleared:

I was born on my mother's twentieth birthday, and even at those times when we were at loggerheads and didn't understand each other very well, I always had a curious sense of living in parallel with her, looping my life with hers. When she was just shy of thirty-five (and I of fifteen), she was diagnosed with locally advanced melanoma. Only by a near miracle (comprised of an expert surgeon, two brutal years of chemo, and her own iron will) did she survive to relish ten cancer-free, adventure-filled years, following my geophysicist father all over the country and eventually overseas.

They were living with my little brother on the island of Sumatra, Indonesia, when Mom's right breast swelled one day to twice its normal size; what appeared at first glance to be a tropical infection proved instead to be the most deadly and fearsome of breast cancers, inflammatory. Again, she had expert care and her own great heart to carry her further than we had reason at the time of her diagnosis to hope that they could, but rogue cells eventually found their way to her spine and brain, and treatment savaged her immune system. Three years after her diagnosis, a necrotizing staph infection took root in her jaw and gave us ten days to celebrate her life and spirit in her presence. We've been celebrating her in her absence for all the seventeen years since, living in her honor, with a vengeance.

For sixteen of those years, I waited for the other shoe to drop, and last December it finally did, when I found a lump in my own right breast. Dense tissue rendered it almost invisible on a mammogram, but it emerged clearly on a sonogram. A needle biopsy returned a life-altering verdict: triple-negative invasive ductal carcinoma.

Five weeks later, I learned that I carried a BRCA1 mutation, and three days after that I had a double-mastectomy. My sister tested clear: she and my niece are at no higher risk of having their epithelial cells rebel than anyone in the general population. Through five months of chemo, I drew closer to my mother every day. There were things I finally understood when she no longer had the benefit of my empathy; I felt partnered and protected at moments that could otherwise have been unbearably lonely.

An oophorectomy marked the end of my treatment in August. My husband and I celebrated by spending the last two weeks of September snorkeling and hiking on the Big Island of Hawaii. A week after our return and a week before I was due to return to my work as a dog trainer, stroke-like visual symptoms sent me to the emergency room. A CAT scan soon revealed a 1-inch metastasis in my brain.

I am three weeks out of surgery. It went as well as it possibly could have, and still my straw is but a stub. I've been told I may have six good months, and I mean to spend them recklessly, like the gift they are.

Forza!
Gretchen

P.S. Yo, Ry-dog! Check out the colon-appositive pairs! (And no, for the rest of you, I'm not talking about anything to do with the lower intestine.) Those are in your honor, my friend, even if I haven't finished drafting the essay I'm supposed to be working on... Did I mention I'm still recovering from brain surgery? Why are you rolling your eyes?

What to do?

This post is made possible by the generous support of Deborah Orandon and Ivan Nedds. It's for Meg and for Gramma. (Too late, alas!)

(Parental advisory: this post is likely to be saltier than most. Delicate natures should be warned that they might secretly thrill to what's coming...)

I've been doling out a lot of advice here, so enamored am I of my new x-ray vision. But I could use your help in working through one of the stickiest dilemmas that an end-of-life span presents: what to do with the narcissists?

You know the saying: Into every life, a few self-absorbed assholes must fall. I'd ask forgiveness for the crudeness of the term, but it's highly precise. These people are most easily identified by their powerful tendency to seek the stars up their own butts, and then to navigate by them. (Sorry, but that's such an exquisite description that I'm sure I must have inadvertently stolen it. Let me know if you said it first or know who did.) They're the ones who careen through our lives like a truckload of bowling balls, and every time they run over our feet they throw us an indignant "what the fuck was that about?" scowl. People who are almost preternaturally attuned to what we're feeling... about them. About the rest they could not give a vole's fart.

Some of them are at least fun. With these you can go on a case by case basis, weigh the relative costs and benefits: a little more life in the party, a little more risk of a sudden razor cut.

TANGENT ALERT! OMG, Pete and I made a trial run last night of the Voicebox in NW Portland. It's a private karaoke bar - we've got a suite booked as the kickoff to a rollicking four-day celebration of my sister's birthday and EVERYTHING in a couple of weeks. But last night it was just the two of us, testing out our pipes and seeing if we could make it through our favorite songs without getting ambushed by rogue lyrics and bawling like babies. "Landslide" is one of my standards, right in my manly man range, but what the fuck am I going to do with "Can I sail through the changing ocean tides? Can I handle the seasons of my life?" but put my head down and pretend words are nothing but sounds? But I drifted here to say how excited we both were to find Peter Tosh's "Stepping Razor" on the playlist. I never knew the song 'til it showed up (in a cover version) on the soundtrack of an amazing Canadian television series that we watched on DVD a few months ago, Intelligence. And the song's tremendous evocative power for me probably has to do with its association with that narrative and especially with the character of Jimmy, played by Ian Tracey, whom I would have been happy to watch eating soup. A very big bowl, a freakin' tureen of tomato bisque, split pea, whatever. His face is that interesting. So I can't say whether the song will cast the same spell on you that it does on me and Pete, but the lyrics are a surreal marvel. Check it out.

No, the fun narcissists are not the ones who cause the most grief. The boring ones, too, are more or less innocuous. No, it's the specially suffering wound-lickers who can really ruin your day, and this sometimes seems to be their vocation. (I should note that I have been one of these people at some bad moments in my life and very nearly fallen under a permanent curse, so I know whereof I speak.) If there's someone in your life whom you're constantly hurting despite your employing three benighted beagles on every trip you make through the minefield of their insecurities, bingo! You've got yourself a live one, and your arm will never be long enough to create a safe distance between you. That's because they will continually yank you close and grab you by the short hairs of your desire to be a good, a caring, a compassionate person. They know you're weak that way, and they'll exploit your weakness at every opportunity. Your desire not to hurt their feelings is a blazing sword in their hands.

These SAAs have a lot to say about duty, responsibility, character, and generosity, but you'll notice that it's all oriented in the direction of what they're owed. By you. They will cut down the space you have to move or breathe to the dimensions of a jail cell, because it's the only way they can feel sort of safe in your company. But they want to be around you, insist on it. How can you deny them after all they've given you? They're blood! (These vampires are big on blood, let me tell you. And no wonder, when everyone else has fled for the hills.)

Do we owe them anything? Even if we are gazing out confidently (foolhardily) across an ocean of time, can we really spare them a drop? What do you think?

Forza!
Gretchen

What do you know?

That's the question a beautiful new friend asked me last night, and I gave a rambling answer. I've got a more concise one now:

We all have the right to claim our own power, to beam our own light. Never to poach on, shadow, or blight anyone else's. Holding these two truths together is a tricky but worthy endeavor.

That's it. I'll let you know if I learn something more.

And you? If you had but one pithy lesson to impart, what would it be? 

Forza!
Gretchen

I've won the lottery

Hello, all -

This is easily the strangest missive I've ever tried to compose, and for some of you its mere arrival in your inbox may open a small window of surreality in your day. I hope you'll forgive me if it comes to you out of the clear blue and if it presumes on an intimacy or sense of connection that may on your side be tenuous or nonexistent. I hope not to blight your spirits, even if my news is superficially grim.

There's the preamble, the drum roll. If you do know me well, you know my great weakness for self-dramatization. You know that, when I am given sanction to imagine myself a charismatic player in some grand (or pretty please at least moderately absorbing) plot, I am utterly in my element, a very happy fishie.

To the point, little minnow.

Most of you receiving this already know that I lost my mom to inflammatory breast cancer when she was only forty-eight, also that last December (at age forty-four) I received a diagnosis of my own for a somewhat less terrifying but  also unusually aggressive ("triple-negative") subtype of the same disease (not really the most accurate term, but let that pass for now). The discovery a few weeks later that I carried a BRCA1 mutation was shocking without being surprising, and it helped to guide my subsequent treatment. I had a double-mastectomy in January, followed by five months of chemo, the first eight weeks of which involved a cocktail and regimen that kicked me in the teeth and left me briefly miserable. I emphasize the misery with the brevity to highlight the terms of my attempted bargain and my eagerness to embrace them: a few truly crappy weeks to buy a chance at a longish life. Excellent terms, even with the many provisos in the small print. I completed treatment at the end of June, had my ovaries out in August (to mitigate the risk of a second cancer), and spent the last two weeks of September celebrating with my husband, Peter, on the big island of Hawaii. We had a wonder-filled time, even if the cabinetry at every place we stayed was unaccountably hostile. I was continually attacked from the left by shelves and doors that I knew had been shut an instant before.

We returned home September 30th, and I prepared after nine self-fatted months joyfully to turn some of my energy and intelligence outward again. Classes would resume at Bridgetown Dog Training on October 11th, and whatever nervousness I felt about the lingering numbness in my feet and dullness in my mind had an easy answer: puppies!

Alas, the furry reunion was not to be. A week to the day after we returned from Hawaii, a double slice of my vision fell completely away. I was due to see my OB-GYN for a post-surgical follow-up, but I asked Pete to detour to the emergency room. A CAT scan revealed a sizable mass (roughly 1-inch in diameter) toward the back of the right side of my brain, behind the optical chiasm, in the border country between the occcipital and parietal lobes. It was presumed and later proved to be a metastasis of the original malignancy. Thus the day marked for my return to work found me recovering instead from the successful excision of this little lemon from a wobbly jello mold (my surgeon's vivid analogy).

All went as well as it possibly could, and all the remaining news was good: a clear post-operative MRI, and no perceptible metastases anywhere south of the blood-brain barrier. (The chemo actually did its job remarkably well.)  And yet. And yet. My straw is but a stub. On Wednesday, Peter and I met with my lovely and unflinching oncologist, and she helped us push off as gently as possible into uncharted but at this moment beautifully tranquil waters.

Here's the deal. A triple-negative growth like mine has an extremely poor prognosis once it has taken up residence in the central nervous system. If you've followed my story so far (blogging about it, natch), you'll have read my approving reference to Stephen Jay Gould's "The Median is not the Message," so I should probably be more sympathetic to the doctors who have urged me to chase a vanishingly small chance at "progression-free survival." But the costs of that chase so clearly outweigh the phantom benefits that I cannot feel tempted. I'll soon undergo four weeks' worth of full-brain radiation, but only in the interests of protecting the quality of the life remaining to me. That will mark - by my choice - the end of my cancer treatment, and all further medical intervention (minimal, I hope) will be oriented toward saving me and everyone in my immediate vicinity from any/all avoidable distress. No further surgery, no further chemo, no further scans.

I hope you'll understand, for all our sakes. If we stand any hope of introducing some sanity into American health care and making it more widely (oh, come on, can we not fucking say universally?) available, those of us who are able need to exercise our right, our responsibility to say "No. Enough. Thank you for every amazing thing you've already done." Any of you who has been first or secondhand through a "cancer journey" knows that it takes a village of dedicated people continually exceeding their professional mandates just to get us from A to B. Could we try protecting them a little from their own passionate commitment, not ask so often for G or Z?

Principled compassion aside (how does that sentence end?), I simply cannot bring myself to spit in the face of my unbelievable good fortune.

I don't use that phrase grudgingly or in the way of someone trying to put the best possible face on a bad situation. I use it with my whole heart, my whole head (or what's left of it. My sweetheart serenades me now with Buck Owens: "My bucket's got a hole in it. My bucket's got a hole in it. My bucket's got a hole in it, and I can't get no beer." He's pretty great, Pete.) And you should need very little help in seeing how absurdly fortunate I am. At this gloriously precarious moment, I am full of health, full of life. I lack for nothing. Truly. I have been delivered almost whole into the most delicious of fantasies: the secret land of Now, where the whangdoodles roam free. Three days ago, my oncologist gave me ("we are always wrong, but...") the proverbial six months, along with a referral to palliative care.

Many of you reading this are artists of one stripe or spot or another, and you may be the quickest to believe that I am in a kind of rolling ecstasy over my situation. In fact, if you're in any doubt about your essential identity, this will make an excellent test: Do you envy me? You don't need to answer aloud. You can decide for yourself whether and when to reveal what a weirdo you are. But you'll know you're not alone. I have been preparing for just such a stage turn all my life, never daring more than a sideways hope that it'd fall like a Keatsian peach (a little overripe) into my lap. To be fully alive and to know it and still to have voice to sing. (The only truly annoying thing is that I've now got Phil Collins stuck in my head. But not to worry -  Richard Thompson supplies excellent curative and preventive therapy for earworms.)

I don't know whether I'll teeter here for another minute or another year, but after long, careful deliberation... Ha. Here's what I'm saying. My days of care are over. A very different thing from saying that my days of trouble or worry or pain are over, but right NOW I find my predicament utterly delicious. And NOW too. Even better because I have managed almost to complete this particularly urgent (to me) task. I got so lucky (again!) that my first metastasis (others are coming) arrived where it did and not in my frontal lobes, motor cortex, brain stem... name it and its loss could have damaged or completely knocked out a capacity I hold much more dear than the ability to see my neurosurgeon's fingers waggling to the west (or dodge belligerent chrysanthemums: simple walks have become mighty adventures). New damage, new deficits will arrive in time, but for now... for now... So many nows in a day.

Most of you reading this will need no explanation for why I've included you among its recipients. If you are puzzled, my justification is simple but at this loaded moment irresistibly compelling: whether you have ever known it, you have touched my life in a way that has enlarged its scope and heightened its many pleasures. You might have met me only recently and come to know me only a little, or my strange name might trigger the far-off memory of a bright little tomboy with lots of good intentions and no self-discipline whatever. Gretchen "full of potential" Icenogle. If I realize any of my promise, you are partly to credit or blame. You may not remember me, but you have mattered to me, and I want you to know it.

If you have received this secondhand, please don't take offense or wonder why you didn't rate a spot on the first mailing. "My bucket's got a hole in it..." I'm freely delegating and/or walking away from a host of responsibilities, and the first favor I have to ask here is that you share this with anyone you think might care, since there's a real possibility I've failed to tell that person myself. If you've received this secondhand and you have reason to believe that the omission was deliberate, I ask your forgiveness, too. I am not operating from bitterness but from a pragmatism that is frankly ruthless. Last night I saw my favorite actor perform in a splendid production of Stephen Spotswood's obscenely juicy take on Red Riding Hood, In the Forest She Grew Fangs. I'm stating a plain fact when I say that I have a bit of a glow about me at the moment, the glow of nothing to prove, nothing to lose. I've never kept company with "alluring," so it's fun to get a late taste, but it's also problematic. When an acquaintance I've only ever been able to enjoy from a distance approached to ask when we could do lunch, I demurred, and when she pressed I told her, "I just don't have time. Almost literally. I don't have time." (She's a weirdo like me and will make a good story of this.)

This is the second favor I have to ask, and I ask it for your sake as much as for my own: Please don't  venture near unless explicitly invited. I am an extremely hungry and intermittently terrified animal in these days, and I will make every effort I can not to be cruel, but I am nothing polite. I am fiercely intent above all on protecting those on whom I am leaning very hard. They have almost my full weight already, and I need them strong.

I need you strong. If you're wondering whether there's something you can do (as opposed to all the things I might tell you I really would rather you didn't), it's this: take whatever sudden flush of energy might fill you when a toothy creature grabs you by your tender throat, and let it hurl you past doubt further into the work you're already doing or know you need to do. Whatever that is. Maybe chasing down the email address of your ninth-grade English teacher (Hello, Mr. Hendershot! Thank you for believing that I was ready at thirteen for As I Lay Dying and for thereby helping to teach me how much I love being in over my head. I hope this finds you well and still channeling the mighty spirit of Zorba!), or that of the woman who wrote the most fiercely beautiful play you have ever been privileged to see totter to its bloody feet onstage (Hello, Eliza A! God, but I hope you are writing!!).

Do you begin to see the possibilities here, the fun I am having and hope to have yet?

The other thing you can do you have already done. You've listened.

I would love to hear back from you in any written form. I just can't promise to reply. Snail mail would be so scrumptious! But please send nothing more or other than paper - you'll only give my dear husband another little heartache around the terrible subject of waste.

Yeah, sweet Pete's still hoping it's all a bluff. I'm gonna be pretty red-faced in a year, lamenting another hour wasted on Pinterest. I'll take my chances.

A thousand thousand thanks. I favor the familial Italian expression for love: Ti voglio bene. I wish you well. 
Gretchen Icenogle

Update: At the strong and timely urging of my father's cousin Sarah, I looked more closely at the relationship between the hypothetical benefits of radiation in a case like mine and the all-too-certain damage. I'm feeling way too protective of my lingering wits to subject them to any unnecessary abuse. I cancelled today's appointment with the radiation oncologist and will be talking instead with the folks in palliative care - then going for a long ramble. I have an irresistible itch to wander, to cover as much ground as my sorry status as a two-legged creature will allow.

We've been asking the wrong question

Not "what have I done to deserve this?" but "what will I do to deserve this?"

It's all gift. None of it earned. We only get to spend or try to hoard it. (Hear that ominous light clattering at your feet? gold passing into lead through your clenched hands?)

I love that a bunch of you are giving Adam Levine a listen on my dubious say so. Yesterday his song, today his beard. (That only makes any sense at all if you've seen the movie Begin Again, wherein his self-parody won me all but completely. And don't even get me started on the joys of a CeeLo Green cameo...)

Anyway, from here forward, I will use (notice the slide into royal peremptoriness) "Adam's beard" to flag not-quite-helpless lapses into pretension (to which I am prone even in more upright circumstances). Like now, when I want to give you a couple of "rather substantial" book recommendations. For what they're worth:

The Gift • Lewis Hyde
Contingency, Irony, and Solidarity • Richard Rorty

Forza!
Gretchen

If in doubt, don't go out

Apologies first to those I've already ambushed with earlier posts, and fair warning to all of you generous hearts moved to swim out with me into high surf. I love your company, and I want you returning safely to shore. Close your inbox, cancel your RSS feed, do whatever you need to do to keep your head above water and avoid the deadly maw of the Undertoad. SWIM AWAY FROM ME IF YOU THINK I MIGHT TAKE YOU UNDER.

"Now I will you to be a bold swimmer..." Whitman says. Not a foolish one.

Forza!
Gretchen