H.L. Goodall Jr.'s Blog, page 2

The Night View From Moon Deluxe: 14 Months a Survivor and Home Sweet Home!

If you have been following our saga on Facebook you know that this week we moved back into our “old house” in Chandler – or I should more properly say that San, Nic, and Alyssa moved us back into it. Hurrah!!!

This is big news for us because we have been living as relative nomads for the past two years. The first year - due to a welcome sabbatical – we were happily traveling in Europe; then rented a lovely beach house in Plymouth, Massachusetts; then divided time between visits with relatives in Alabama and a short-term rental apartment when I returned to work at ASU. The second year due, and solely due to my cancer diagnosis and the then-good idea that a much smaller, single-story rental in a quiet neighborhood might be easier, we re-rented out our old house to the same couple who rented it the year before. It was a good arrangement. For then.

For then. Because then, because ”then” was over a year ago and it was statistically unlikely that I would survive a year. It was, in fact, maybe even highly unlikely that I would see the sky poetry of Homer’s “rosy fingers of dawn” in six months. Or even three months, had I turned down treatment options.

Fortunately, I did not turn them down.

***

It all depended then as it still does now on a curious and curiouser blend of seemingly “empirical realities” we could not reply on or use with any degree of certainty because of the vagaries of any individual’s cancer combined with other emerging/changing and intervening variables (pardon me this bit of social science jargon). These variables range from diet and physical condition to the ability to maintain a positive attitude to family history to tolerating side effects to who knows what else? Put them all together and you have one very large “biological systems challenge.”

“Doc, how long do I have?” is not a very good question to ask if you truly want an answer. There is never one answer to that question about “how long.” And any answer you might conjure up, calculate, or guess at is not simple. It can’t be.

The one simple answer you do have is that you simply have cancer.

I can name its Stage (in my case, Stage 4); I can learn to understand CA-19/9 markers (although these markers are not always accurate for any one individual); I can look at and analyze CT-scans, bone scans, PET scans, and xrays; I can talk about treatment options and try new and different ways of beating back the rogue proteins and reducing tumors and the rest of it; but there is no certainty to this damned disease other than this one: I have cancer. Oh, and that it is going to kill me one of these days. 

It’s enough to make you rent a smaller house.

Yes, that was supposed to be a little bit funny. [image error]

***

So why move back? Why not do another contract on the small rental unit? Why not keep it simple? Say, three months at a time?

Here’s why. We have learned how to “live with cancer,” not just die from it. I mean, I’m still here. Our family is still here and we are together. I still have a job. I’m still interested. I’m not done yet. Even if I didn’t have cancer – but maybe in particular because I do have it – it would be important to live as richly, and as fully, as possible. I’ve always believed that. None of us know when that final tap on the shoulder will come.

I was given some advance notice. As frightening as that advance notice was and is, it did not arrive without also bearing its own mysterious gift.

San and I have often talked about how lucky, how truly blessed, we have been to have had this year (and now longer) together. We have learned so much about ourselves, our relationship, our love of each other and of living and celebrating life! We have used our time to be with people we also love and admire, and we have had the distinct honor and pleasure of entertaining conversations that might well never have taken place without the emotional “urgency” of getting it said and done now, as well as those times when just being together without much urgency was just the right thing, too.

Cancer was and continues to be the rude interruption (Art Bochner’s apt term for it) in our lives but to see or to understand this year as only a rude interruption fails to accept the part of this year that also has been a gift. That gift was all about answering with our lives this one key question: how best to spend the rest of our lives together by living fully one day a time?

We fortunately had a lot of help figuring that out. With the care, compassion, medicine, and positive attitude of the amazing caregivers and docs at Four Winds Cancer Clinic (and now with the addition of Dr. Scott Tannehill and his team at the radiation center); with the overwhelming outpouring of support, friendship, prayers, poems, music, laughter, and love from all of you; and with a whole lot of hard work each and every day from my “home team” we have not only beaten those early odds but learned how to answer that key question.

One result is that we have so far mostly triumphed over despair, depression, anger, railing against the unfairness of life, and etc., replacing but not entirely erasing those negatives with a profound gratitude for what we have together and have lived together and will live together as long as we can. Even though I would be big liar if I said I wasn’t worried about the way my personal narrative will end, I can accept – we have to accept – that one fine day my final sentence too will be interrupted, probably before I reach the period I had in mind.

But not yet! I am today as “here” as you are.

A bit of a brag, yes, but also a fact.

So, anyway, it was time to embrace my “here-ness” and for us to return to a more normal life. It was time to be back in a home we love. One that had been the center of so many of our best memories about living here during Nic’s high school and early college years. It was time to be with and once again to be with and appreciate some of our own stuff – mostly a really good bed, some cherished books, useful cookware, and a few pieces of art, including the “Cool Metal Moose” that joined us earlier this year. And so on. You know the feeling. It’s good to be anchored; it’s good to come home. 

So good to be home. 

And, thanks to Nic and Alyssa, to have an awesome new recliner.

***

Today is July 1, 2012 – say Rabbit, Rabbit, Rabbit for another month of good luck! – and we have entered month 14 since the original cancer diagnosis. As I never get tired of saying, I have beaten the odds, at least so far. I am a very lucky man.

One day at a time: I am still alive. If you discount some brutal wear and tear on some of my internal organs, (tumor on my pancreas, lesions on the liver) spine (tumor outside pushing in, plus a thin fracture at T8 that causes the radiating back pain); and pesky cancer spots along the lower shoulder blades); a few side effects from the chemo poisoning and extreme radiation heat (chemo brain; neuropathy in feet, ankles, and hands; changes to my taste buds; minor sores in the mouth; weight loss and then weight gain and now weight loss again), I may walk with a cane and avoid using knives in the kitchen, but I’m still a pretty good case of what the late great southern novelist Barry Hannah once called “insistin’ on existin’.”

And I plan to get even better.

That line too is meant to be at least a little funny. A little. Come on. It’s not entirely untrue, either. Dr. Scott assures me that the goal of radiation is the complete eradication of the bone cancer and spinal tumor. If we accomplish that goal, I will certainly feel better. The pain will be gone. At least that pain will be gone. And at least that pain will be gone for a while.

Better, but not perfect. Not cured.

One day at a time …

*** 

Last night a big yellow nearly full moon just passed over this old house and for the first time in two years I watched all of it. We have three high windows that frame the movement of the moon this time of year and the view they enable or reinforce or maybe just symbolically encourage underscores how fast the world turns, how soon even a “moon deluxe” as this one is gone. 

Beneath that moon and all it represents or evokes there is also the soft pulse of a waterfall by the small “play pool,” itself surrounded by tall palms and exotic plants that make this admittedly artificial oasis in Eden welcoming anyway. I listen. I just listen.

Do you hear it? Can you feel it? 

That’s life. That’s life at night right here in our little piece of shared paradise. It’s a beautiful night. Take a deep breath, deep as you can, hold it, and then let it go. Because that is how life is.

Yes. That is how life is.

And life is good! 

***

I Am Still a Very Lucky Man

I have spent this week getting accustomed to life on steroids (in advance of the forthcoming radiation treatments that begin on Monday) and reading the festschrift done in my honor. The two experiences reaffirm for me (albeit in very different ways) that I have been, and continue to be, a very lucky man.

So far my body responds pretty well to these steroids, at least as measured by a substantial reduction in back pain, and with it, increased mobility and improved humor. Yes, these steroids do bring on some surprising side effects - including sudden “hormones-on-the-run” bouts of choked-up teariness that I am completely unable to control and, according to San, do not have the “cry face” to adequately support without inducing laughter from others. But on balance, not so bad.

This otherwise cry-free Bud-face was born to revel and laugh, I say.  To tell stories. To live stories. To sing and play them. To drink of the magic elixir of life and to share the wonder of its intoxicating mysteries. To enjoy each and every day. To learn each and every day, beginning with ‘knowing where you are” and to connect and compare that “local knowledge” all the way out into and among all of those ineffable stars. It is from this simple, holistic, epistemic core that I learned not only how best to listen to others, but to use what I heard and observed and lived with them to be helpful, which is to say, simply, to help others learn how best to tell their own stories.

And what remarkable stories these are! What remarkable poems and artwork. This book is made up of them. They construct a fantastic narrative pleasure-house collage created in diverse voices and attitudes and even a little friendly criticism - what KB calls “perspective by incongruity” - about “my influence.” Collectively and individually they offer a rare (at least in my experience) candid and insightful, critical and loving, and sometimes belly-laugh funny series of 38 all-star and amateur riffs on what my long-time pal and co-conspirator Eric Eisenberg calls “Bud the man and the Bud experience.”

I mean, really, who gets this kind of end-of-life validation? I say it again: I am a very lucky man! 

*** 

Ah, ad-hem. Yes. My guess is that you may have been fine with this post until you read those three little words: “End-of-life.”

But please don’t be put-off by them. Or read too much into them. As we have often mused in this blog since the very start of it last June, we all die.

We still don’t know much about the experience of it (or we know way too much about the technical/medical side of it, and that doesn’t always help) and, for a lot of reasons, too many of us are still too frightened of death to speak openly about it. So we live with a kind of mythic narrative that, as Ernest Becker put it long ago, is a “denial of death.” As Art Bochner puts it: 

There is so much in life we can't control. The illusion that life is predictable and tomorrow will be the same as today comforts us, but in the long run it does not serve us well. If one lives long enough, he or she will likely wake up to some disturbing and undesirable change.

Art says that what I am doing as I/we navigate this last chapter of my life is teaching others “how to accept unexpected interruptions in one's life story with acceptance, patience, and love.” I’ll take it.

***

That doesn’t mean I know what I’m doing. Or that I have a clear plan. Or that I have any more of a clue than you probably do what the “end-of-life” will be for me when that final phrase one day rings true. I’m writing this blog in part to find that out.

But only in part. I also know in my heart and in my head that what happens next is not something I’m supposed to entirely know nor can I or any of us adequately prepare ourselves to meet. If a larger plan exists, and I do believe there is one and that it is ultimately unknowable, I want to enter it gladly and with gratitude and awe.

But who really knows? My upfront and personal lessons about death are few. My father died in his sleep, or so the story goes, and anyway I didn’t see him until he was nattily attired in a coffin. My mother died in a hospital in a bad way that went on too long because we were afraid to “make the call.” I was with her, but aside from a clear preference for not unnecessarily prolonging life in that way, I’m not sure I learned much. I’ve read other accounts from eyewitnesses and there just doesn’t seem to be a clear pattern. All of us, it seems, die in our own ways.

I figure that the “best death” I can maybe hope for is to fall into a peaceful sleep surrounded by my loving family. I’d like to avoid leaving behind a “death drama” – given my obvious lack of an acceptable “cry-face,” any untoward histrionics at the end would no doubt appear ridiculous – and, when it comes down to the finality of the finality, hey, if there is a “big pill” or whatever, well then, ad-hem. 

Yet I know that this death scene scenario-setting is pure hubris and also unnecessary. I can no more control the end-of-life than I controlled life. Fortunately for me, I was never much into control.

What I have always been about is the lived experience, the resulting story, and the knowledge that much in our lives is about recognizing and coping with ambiguity until it isn’t ambiguous anymore. At that point in this imagined “end-of-life” scenario, I just close my eyes and “go with it.” I don’t even know what to call it, but lately “the Great Whoosh!” keeps popping into my head. And, for some reason, that language makes me smile. 

I hope my soul will be able to take into that Great Whoosh! some of what I’ve learned here, and I sincerely believe that what I’ll leave behind are relationships, memories, and love that will endure, if only in echo, in moments recalled, in laughter shared among family and friends, and perhaps even in dreams.

In the meantime, hey, it’s a great day to be alive, even living with this rude cancerous “interruption.” I plan to make the most of it. Don’t you? 

*** 

P.S. I don’t yet have the necessary details about ordering Celebrating Bud. When I get them I’ll be sure to distribute it widely, including on this blog.

An Anniversary, a Father’s Day, a Book, and Some Mixed Cancer News: Life is Complicated

Today, June 16th 2012 is our 23rd wedding anniversary and it began with a hug and kiss from my lovely bride, Sandra, aka “the Supreme Bunny Being.” Then, after a short shared hour of sharing the news from our respective iPads and a cup or two of coffee, she headed over to our “real house” for final touch-up to the new paint and I remained, sigh, in the recliner to write this blog.

Tomorrow is Father’s Day. But Nic and Alyssa had a Father’s Day feast for us last night when we returned from a loooooong day getting new scans (details to follow at the end of this post). Alyssa baked my favorite chocolate cake in the style she has created – light texture cake, butter crème infused icing, just the right balance of goodness and sin. Yum! Nic procured my new favorite Cav – B. R. Cohn Silver Label – from a vineyard owned by one of the Doobie Brothers band members, truly a mouthful of red wine pleasure!

And this: Just this morning I opened Facebook to see the finished cover for Celebrating Bud, the tribute to my work and life put together by my pals. I’ll post more details about the book later, because here I just wanted to say thanks to everyone who had a hand in this volume and that I can’t wait to read it!

So much good news! I am truly blessed. We are truly blessed as a family. And you, too, I hope can feel the wonder in this life and accept with gratitude the goodness in it and all around us, just waiting for us to say “yes!”

But life is also complicated. It’s meant to be that way. It’s all part of the Cosmic Spaghetti. [image error]

Sorry, but that last referent made me smile. Crazy, huh?

***

For years I have been writing about the “mystery” of life, a mystery that we engage with our every thought, passion, and action (the philosopher Richard McKeon’s words seemto sum it nicely here). As I get closer to the end of my particular journey I feel the truth of that chosen way of being in this world has served me and mine pretty well. There's magic in the mystery ...

But the story of mystery in our lives not always smooth, nor is the mystery-within-the-mystery of cancer easy to live with or even to figure out. One lesson is that once I recognized that I am part of a grander narrative and my assignment is to find my proper place in it, make what small contributions to this world and to its people I can make, and love and work at it with all my heart and brain and soul and hands – well, that is the storyline I’ve followed and so far it has served me quite well.

*** 

This morning I also woke up once again in the recliner but with surprisingly little back pain. Hurrah! The new steroids are working. Thank God, my oncology docs, and the pharmaceutical company that manufactured it. 

Why steroids? Why now? 

The short, non-technical version: We got some, well, let’s call it “mixed news” from our new radiological oncologist yesterday, but it came with a handy prescription for steroids that have already eased the back pain considerably. This is a mighty good thing for me – for us – because the pain had become quite intense and the oxyC painkillers weren’t really doing what they did so well only a week ago. In the interim our Four Winds team kicked into high gear, Dr. Robin recommended Dr. Tannehill for a consultation, and she shared with him my scans. 

Turns out I have a tumor pressing against the nerves that rest against my spine and s small hairline fracture on the spine. The steroids are a short-term solution but the longer-term solution is radiation; a 15-session daily treatment of targeted burn. I can’t begin next week because I just came off a week of chemo and my body needs time to recover. That’s the good news.

But I have to admit yesterday was hell. Spent it lying down twice for over an hour (very hard on my back) to get new CT-scan and first ever MRI. Broke the end off my cane pressing down too hard when trying to stand up. Nic today will fix it. And also today – didn’t I say life is complicated? - San is doing the last touch-up on our house painting, after which she gets one week away from those cares and gets back to her dissertation. Maybe two weeks. Depends. 

*** 

So today and tomorrow are days of high celebration – for our anniversary, for Father’s Day, for the humbling tribute to my life and work, for friendship and prayers and medical science; for stories and for love. As I titled my initial blog post about cancer a year ago, I am a “Lucky Man.”

This year underscores that truth. Not to put too fine a line under it, but one of the ways I have been lucky is by simply outlasting the initial predictions for life (3-6 months) and one of the things that makes even good news like that complicated is that my “longevity” is one reason this new back cancer was a surprise. Most Stage 4 Pancreatic patients don’t live long enough for that to develop. I have. And all of you have been right here with us, cheering us on.

Keep cheering! 

I'm afraid that I have to now admit that my health is deteriorating in ways that remind me, that reminds all of us, that the diagnosis doesn't change but how we reach the end is at leas partially up to us. And I choose not to make getting there any easier for those rogue cancer cells, and to as live fully as I can while I still can.

Thank you for being my friends and supporting my family and me throughout all of this. I'm not done yet. We are not done yet. I promise. As Robert Frost once put it: “I have miles to go before I sleep …” 

***

A Little Music with Good Friends

This week we got very good news from the CT-scans – no growth in the tumors and no spread of the cancer. Combined with the good downturn in the CA-19/9 numbers and our desire to squeeze every bit of happiness out of life, Dr. Robin agreed to give us the week off chemo. We were hosting an Ethnogs reunion/festschrift preview on Saturday night and I needed to be my “full Dr. Bud self” for it. Or at least as “full Dr. Bud self” as I can be these days.

Between that good news from Dr. Robin and the festivities on Saturday night, I had one other task to complete. I promised to write the Foreword to Robin Boylorn’s first book,Sweetwater, which is her autoethnographic account of African-American women in a rural southern community. This project is close to my heart, as I “discovered” Robin back when she was an undergrad at The University of North Carolina at Greensboro. I also directed her master’s thesis (the beginnings of this book) and served as the outside member of her dissertation committee at The University of South Florida (where she honed the theory and polished the narrative). Robin is now an assistant professor of communication at The University of Alabama in Tuscaloosa, an award-winning writer and poet, and now a soon-to-be author of this fine book.

Writing a good foreword – by which I mean one that actually gets read – is never easy. In this case it was a little harder given that chemo brain sometimes makes focusing on a task somewhat difficult. Or I forget what I’ve just read or what I’ve written. Sigh. But I was determined to get this one right, so for three days I labored to write a mere 3000 words. But in the end I think I got it right. I only know that Robin and her editor, Mary Weems, seem pleased with it.

***

Ah, books! The festshrift part of Saturday’s fun involved a soon-to-be-published book of essays honoring my scholarship and teaching, edited by Amira de la Garza, Bob Krizek, Steve Corman, and Nick Trujillo. Last night I got to see the cover (Celebrating Bud is the title and the cover captures that sentiment perfectly) and the list of 30 contributors.

It was a good thing I was seated. “Blown away” and “humbled” are words that usually don’t belong in the same sentence, but this time they do. I’ll post more about the book when it is published, along with information about how, if you are interested, you can obtain a copy. Proceeds from sales of this book all go to a new narrative ethnography award in my name to be given annually through the International Association of Qualitative Inquiry and the National Communication Association.

***

For those of you unfamiliar with the Ethnogs phenomenon, allow me a couple of paragraphs to explain it.

A few years ago Nick, Bob, and I visited the Experience Music Project museum in Seattle. One of the features of that place is a soundstage where visitors can choose instruments and pretend to play classic songs while being videotaped/recorded, and for a few bucks more receive a poster of the event, the recording, and faux tickets to it with the name of the band and date of the “performance.” We decided to do it for laughs and chose the name “The Ethnogs.” We three are all ethnographers, so it made a kind of wacky, laughable sense. We selected nom de rock stage names, invented autobiographies as our lives as the children of famous ethnographers from the old days, and crafted a mostly comic and entirely untrue story of ourselves. It was all in good fun, done for laughs.

One thing led to another. Nick got it into his head to turn the event into the beginning of a longer-term research project on “mythography” by creating a fictional past for our band and the Seattle recording as our “reunion.” Bob, with an assist from Nick and me, contributed a “yes we inhaled deeply” history of our imagined co-appearances with the Beatles, the Stones, and a host of other great bands from our youth, and all of us collaborated on a “discography.” That led to Nick writing some original songs (for real) under his nom de rock, Gory Bateson.  You can listen to them on YouTube by just typing in his faux name.

He sings better these days. I swear it.

***

The next thing we knew we were being asked to play as a real band at our national communication convention. Somewhere along the way to that venue we picked up another ethnographer, Chris Poulos, who, under the nom de rock Ripp Tup, became our “roadie,” and few “groupies” who also collaborated on the event and the by-now burgeoning fictional history of the faux band.

We also had a “guest rock n roll accordionist,” Steve Corman, aka “Wolfie,” who joined in the fun with his faux German accent and a story about having played with the original band back in Berlin. I should also say that by this time the Internet had spawned its own viral history of our band, complete with real people from several continents claiming to have seen us play, back in the day. You can access some of that madness on Bob’s site here or read one of them here.

This bizarre turn of events – moving from faux to real – also produced rhetorical fuel for Nick’s study, and he and the whole idea behind it was featured in The Chronicle of Higher Education. There is also a published scholarly article, “Performing Mythic Identity,” about the band. And there are blogs that curse us for “grabbing fame” or that question our motives, as if we take any of this seriously. Sigh.

It’s not all fiction anymore. Nick is now an “independent music publisher” and is about to release his second solo CD under his nom de rock. Not bad for a guy who used the group as an excuse to learn how to really play guitar and sing. I add only that Bob, who began this project without knowing how to play an instrument, is now a pretty good guitarist with a beautiful collection of Rickenbackers.

The truth, sometimes, is indeed stranger than fiction. Particularly when it is created by it.

The Ethnogs began as a hoot and remains one to this day. There’s nothing serious about it and the music is pretty basic, but participating in a faux band has been a lot of fun. And there’s this: Nick lost his wife, Leah Vande Berg, to cancer in 2004, before we made that trip to EMP in Seattle. Bob had also lost his Mom and sister during this time. You know my story. In all three cases the whole Ethnogs phenomenon has been not only comic relief but also therapeutic. Music will save you. I swear it’s true. 

***

Music, books, friends, food, conversation, laughter. It’s a grand life, if only we let it be so.

So it was that Bob, Nick, Steve (with his lovely wife Diane), and Amira all visited us at our Sun Lakes house on Saturday night. We ate jambalaya (made by San and Nic), looked at some of the festschrift materials that we accessed via a very cool guitar flash drive (thanks Amira!), and I joined in the singing (neuropathy prevents me from playing guitar) of a couple of our “hits” – “Train to Purgatory” and “Anthem.” Nick also sang “Purple Winnebago” and Steve did a solo using Bob’s 12-string acoustic. As the Beatles put it on Sgt. Peppers, “a splendid time was guaranteed for all …”

The group broke up earlier than we used to on account of my need for sleep but oh what a fun night it was! Good friends, good food, good memories, and good music  . . . an entirely fitting end to a good week filled with good news. 

*** 

This week we return to Four Winds for more chemo to keep the rogue cancer cells at bay. We also plan to talk to a radiation doc of Robin’s choosing, to see if that treatment option might be useful to alleviate my back pain. As it is I am “managing” the pain with drugs, but only just. It is not easy standing up and I still can’t sleep lying down in a bed. While I have become accustomed to sleeping in a recliner, it’s not my preferred location for gentle snoring. As we anticipate a move back into our house sometime this month, I’d like to be able to sleep and snore in our bed again. But hey, these are still fairly minor complaints, given what it could be. And I am still grateful for the relatively good health I am enjoying. 

I want to end this post by thanking again my lovely wife, San, and fine son, Nic, for all they do to keep this family in good spirits while so much else is going on. This past week, in addition to my Clinic visit, scans, and all of the associated chores of “the care and feeding of Bud” were accomplished by them while also working to make our real house livable again. This included their meeting with painters, carpet men, pool specialists, our yard guy, and a realtor in addition to performing some of the manual labor themselves. Alyssa would have helped out, but she was on a cruise with her folks. Our pal Mac graciously stepped in, all of them content to leave me in Monkey’s good company.

When you are alone and feeling a little sad because you can’t do what you used to do, a adorable furry cat doing what adorable furry cats do – which may only be explained by the fact that, as Kurt Vonnegut, Jr. teaches us, they live backwards in time – can be a smile-worthy comfort. Monkey did his job. He was a smile-worthy comfort to me last week and no doubt will be again this coming week. 

Of course, given his backwards-in-time life, he already knows what will happen … 

The Queen's Jubilee and Me - A Knight's Tale

When I think or write or speak with a British accent, I do so these days as Sir Harold of Troubles. You will learn why later in this blog. But for now let’s just say it is a made-up moniker that emerged naturally over my many years as an aloud, proud, somewhat belligerent Anglophile and imagined Queen’s court jester, a veritable imitator of all lines Monty Python; of all innocent dialogue turned stoner-tweak between Bill & Ben, the Flowerpot Men; and of course countless hours spent watching and/or reading and/or discussing the comparative merits of British authors, British music, British sports cars.

British women, not so much. But there are exceptions, one of whom is Queen Elizabeth II, who, today, begins a joyous four-day celebration of her 60-year reign.

And really, what kind of fan of the Queen or the Queen’s land would I properly be without beginning such an august occasion with that most unhealthy of ways to start a lay-about Saturday, the Full English Breakfast, complete with lukewarm tea and cold toast, bland beans, awful black pudding, fried sausages of dubious origin, a rasher of fried bacon, a dollop of fried mushrooms, a blackened/grilled tomato, and hard-fried eggs?

Just kidding about the Full English Breakfast. Haven’t had one of those in some time, although I can still draw on memories from breakfasts past, including those mornings spent with the students at Oxford, Cambridge, York, London, Dublin, Edinburgh, and more than a few B&Bs throughout the UK. Today, however, I began my day with the Sir Harold special: a bowl of honey nut Cheerios topped with fresh strawberries.

Ah, yes. Just so. Yet all is not forgotten. I still have cold toast. Please pass the orange marmalade and the lemon curd, won’t you?

After all, this post is just for fun …

*** 

I was born in 1952, the year of the accession of Her Royal Highness Princess Elizabeth of York to the throne, although her coronation as Queen would not occur until 1953. So it is only fitting given my fondness for all things UK to take this weekend’s high celebration – the Queen’s Diamond Jubilee – as a way of taking stock of our largely unshared 60 years.

Unshared. Yes, we have lived during the same historical era. But differently. Quite differently in ways that call into question how “shared” our respective and collective journey has been. For one thing, she was reared to rule and has; I was reared to serve and have. And then of course there is the money.

Beyond the Buckingham Palace and Windsor Castle and the Royal Collection and the Crown jewels and the Crown Estate as well as other whatnot, a report from CNBC last year put the Queen’s annual income in these terms: 

The U.K. government still hands the queen income from the smaller of the two property portfolios. Last year she received $21.8 million from the Duchy of Lancaster.

Taxpayers also give Elizabeth an annual allowance of $23.3 million for performing 360 engagements a year as Head of State. The Palace says she spends 70% of that on servants and entertaining 50,000 guests, mostly feeding them afternoon tea in the garden of Buckingham Palace.

Taxpayers also pay the Queen $25.9 million in expenses to maintain her palaces; $6.4 million toward the Royal Train, helicopters and jets; and an additional $6.4 million toward other costs, like State Visits.

In total, each year the queen gets $83.8 million from government. 

It's widely assumed Elizabeth also receives a multimillion dollar income stream from her private portfolio of stocks and bonds. 

If you’re buying, I’ll have that pint now.  Please.

***

The Queen and I share nothing much and yet almost everything in common. By “nothing much” I mean anything personal, which would be “nothing at all” except for the one odd thing, that “Sir” title in front of my Christian first name. 

We share “almost everything” if you include in that formulation our ways of being in the world by participating in a common language and culture, as well as the fact that both of us are narratively derived from the Western side of the Larger Aesthetic known as world history. Despite being faux-christened since childhood as “Sir Harold,” I am not even a Royalist, although it costs me nothing either way. I do find some of the high cultural trappings, the old histories, and the fancy dress-up traditions worthy of at least a nod and a smile. 

I have also wondered what the UK (and the fifteen other realms she oversees) would be without Her Majesty the Queen? Something would be missing from that storyline and I fear nothing much would be gained from losing it. 

I find such talk makes me thirsty. Another pint, mate?

***

Well, you asked.

Sir Harold of Troubles. Ancient history, but mine. Once upon a time my mother, father, and I lived in England, more precisely in London. It was from 1957 – 1959. Perhaps this early residence has something to do with why I feel such an affinity for the UK and also why, oddly, as an adult I still have no difficulty navigating the city, much to the surprise of San. Back in the fifties we lived for a brief time in Golder’s Green, then in St. John’s Wood. I attended St. Dunstan’s and then The American School in London. My father worked at the American Embassy. We had a black dog my mother named Troubles. 

Sir Harold of Troubles. Now you know the Troubles part. The Sir Harold part is coming right up.

Short version: I was once introduced to Her Majesty. But having said that I have to grin. Can you imagine how many blokes are saying the same exact words in countless pubs worldwide? It is our collective attempt to individualize a relationship that I’m quite sure the Queen would not remember, or if she did remember, would rather forget. Cheers!

In my own case I was rewarded as a schoolboy for reciting a passage from King Arthur, hence the “Sir Harold.” As is true in so many cases where even a passing glimpse of the Queen in her carriage counts as “having met her” or “was once introduced to her” by those gifted with an ability to traffic in strategically ambiguous exaggerations, those of us who have only and truly been temporarily in her Majesty’s presence and who profess not to care a whit about royalty, nevertheless carry the memory and Sir Harold story of it like a prized gold star.

*** 

Back story, or at least the part of it I can tell you. My father was a … er, a diplomat (and, buried deep inside these parentheses, a spy).

My father met the Queen before I did. When he presented his credentials to her, he in turn was presented with a document signed by Elizabeth R, granting him all sorts of powers and prerogatives, including the ability to command ships, transfer large sums of money, and to engage in whatever activities our governments authorized, etc.

We still have that document. The signature is real.

I don’t know what their second meeting was about. 

How did my glass get so empty? Bartender, another pint over here if you don’t mind …

*** 

There are other ways to story my non-personal relationship to the Queen, not the least of which is through our non-shared personal experiences over the past three-score years. 

My guess is that I’ve owned more British cars than the Queen has driven. It’s a safe bet, I know, because the Queen doesn’t drive although she “trained” as a driver during WWII. These days she rides in the backseat of a bulletproof Range Rover, but I wonder what she would have made out of my 1963 MGB?

Or the 1964 Triumph TR-4A?

Or the 1960 MGA? 

Or the 1966 MGB (what was I thinking – two of these models in one lifetime?).

Or the 1976 TR-6?

Or the ultimate in non-cost effective British over-the-top automotive unreliance, my gorgeous 1989 Jaguar XJS V-12? Sigh.

I know, I know. Today’s sleek new Jags and her truly cool Range Rovers are matches for the world’s best autos, but nothing – not all that Royal money, not even the Crown Jewels – will ever replace the personal memories I have of putting up the badly designed metal frame for the convertible top of those MGBs as a summer storm opened up the skies, or the agricultural grumble of, finally, a successful motor start-up after an hour or so of fiddling with SU carburetors, or the curious semblance I can still recall of the heater knobs on MGs to those same temperature knobs on my mother’s old British stove in Golder’s Green.

But I doubt the Queen shares any of those experiences, even without my company.

***

As I said earlier, we live quite different lives.

Here’s what Kenneth Burke would call “a representative anecdote” that bodies forth the nature of our difference: Two years ago, during a Summer Abroad excursion, we watched the Queen’s passing on her way to open a session of Parliament. 

Or I should more precisely say we watched the Queen’s carriage and the Queen’s Men parade down the street on the way to Parliament, just behind a keenly outfitted horse regiment and likewise well-dressed coterie of street-sweepers whose job it was to ensure that no trace of turd nor scent of shit reached the Queen’s nose or notice.

We did receive the Royal Wave from a small woman wearing a large hat. We waved back. 

As a nod is as good as a wink to a blind horse, so too is a wave waved back to royalty as good as a wave from royalty aimed in our common direction. 

*** 

Another pint? Well, I don’t mind if I do. 

There are differences other than wealth, hats, and waves that stand between us and any hope of a personal relationship. Differences that share common cultural referents and expressed in the same language, to be sure, but that may only be understood (as Mark Twain put it) as a difference between choosing the right word from the almost right word, as in lightning from a lightning bug. 

The Queen, without once asking for my opinion, has nevertheless rightly knighted many of the pop stars from my youth – Sir Paul, Sir Elton, Sir Mick, etc. m Although I’m sure those after-parties were fun, I’d not trade them for my own memories of learning to play their songs, or the years of singing them (badly) throughout the days and nights of my life that have been so much a part of me, who I am, what I’ve become.

So too have the Queen and I probably read many of the same books over these many years. We just never chatted about them.

So too have we watched the same shows on television and films at various theatres, or at least some of them. Again, we’ve not had a single conversation about them.

And so on.

Sorry, I’m just a little drunk I think. What am I going on about?

Me and Her Majesty, that’s what! We’ve always been together, only apart, if you know what I mean? I’m sure we could just hang out, y’know? 

My shout? Are you sure? Are you sure?

*** 

I’m tempted to end this less-than-sober post with one of my favorite British-isms: “Bob’s Your Uncle!” For those of you not acquainted with the expression, it means “all is well” or “all is satisfactory,” but it is unlikely that the Queen would ever utter it. 

Instead, and given the gravity of this occasion, I’ll sign off in the official Royal manner with the old Loyalty Toast. I won’t tap my champagne glass (vulgar) but instead will lift my working-class schoolteacher pint and say, with all due respect: 

Her Majesty, Elizabeth the Second, by the Grace of God of the United Kingdom of Great Britain and Northern Ireland and of Her other Realms and Territories Queen, Head of the Commonwealth, Defender of the Faith. … the Queen. 

You may then reply, “The Queen.”

And that’s all there is to it. 

Hey, where’s my beer?

***

Cancer Anniversary: Year One is Now Behind Us!

“Well I can't be bothered with sorrow, 
and I can't be bothered with hate, 
I'm using up my time by feeling fine ev'ry day. 
That's why I'm telling you, 
I Just Want To Celebrate …”

--Rare Earth

After spending a delightful long weekend with our old pal Stew Auyash, we entered the Four Winds Cancer Clinic on Wednesday morning a little earlier than usual – around 8:30 a.m. I was happy to be there early enough to claim my favorite orange chair but the real reason is because this is an all-day chemo run and it’s nice to be done with it before 5 p.m. when the rush hour traffic is at its peak.

I woke up experiencing more back pain than usual. Maybe it's the slight anxiety I feel before a chemo round. Or maybe its how I slept on it, in the recliner, the position I was in which had seemed fine until I woke up. I popped my pills – short and long term oxyC; blood sugar and blood pressure – and tried to relax with my coffee and the morning news.

For some unknown reason, the back pain flares up when I stand up and is pretty much constant when I stand for periods of time on hard surfaces – particularly noticeable in the bathroom while shaving (I may grow a full beard, but not yet) or showering (San got a nifty soft map that helps a little).

Nevertheless, these morning ablutions are a necessary part of the day so I just grit my teeth and I take it “like a man.” Saying that aloud makes me laugh. I guess real men are supposed to “take it” without any complaints, but, even with the teeth-gritting I take mine with a lot of fully-realized expletives on the side. 

***

Our appointment with Dr. Robin was at 9:15 and we looked forward to getting the marker results. She began with them: “We are down to 500,” she smiled, which is another remarkable drop.” It amounts to a 40% drop. 

“Yes, it is.” San and I are both smiling. “So does this man this is my last chemo round or do you think we need to continue treatments?”

“I think we ought to see what the next scan shows and go from there. But right now I’m leaning toward maybe one or two more treatments, just to be sure we got it. After that we can talk about radiation for the back pain.”

I nod. San and I had talked about this on the drive over. I was pretty much hoping for no more chemo, but San – the realist – thought that as long as we are seeing results and the toll it takes on me isn’t that bad, well, why wouldn’t we continue the treatments?

“All of your other numbers are good,” Robin said. We all smile.

“And a whole year has gone by.” Even bigger smiles. 

Let the chemo begin …

*** 

Big hellos and hugs all around from my wonderful team of caregivers – Ashley, Terri, Jan, Lauren, Geri, and Monica – and some small talk with some patient faces we’ve seen before. Everyone is doing fine, considering. Monica jabs me with the big needle and apologizes for hurting me. “No problem,” I say. Truth is it doesn’t hurt, but it’s part of our ritual comic set-up. “You always hurt me,” I puff out my lower lip for emphasis. The look on Monica’s face is priceless. We laugh together.

I think I mentioned in an earlier blog that due to small allergic reaction to the chemo, my caregivers have added a dose of Benadryl to the fluids and steroids given to me prior to the three types of chemo on tap for after that. For some reason, where Benadryl makes some people a little sleepy, it flat knocks me out. So it is that I sleep soundly for the next three hours. Twice I woke myself up snoring. Fortunately the Room of Orange Chairs is filled with people who also snore. Or who don’t complain when I do. God Bless Us, One and All!

I’m quite sure that after I woke up – “woke” being relative here due to the druggy dregs of the Benadryl falling over the outstretched leg of the long-release pain killer – we all engaged in fun conversations because I remember feeling good and following along with most of it. But I could not tell you what we talked about. What I do remember is that (a) I made four trips to the restroom (normal with all the fluids) dragging my portable chemo stand and apparatus with me, (b) I ate two packages of Austin cheese n peanut butter crackers, and (3) that we were finished by 4:30! Hurrah!

Home and in my chair with a nice pizza, wings, and salad dinner, just in time for the happy coronation of American Idol Philip Phillips (San and I picked him early on) and the series finale for Revenge! Which did leave us hanging in the Hitchcock manner …

*** 

Thursday was uneventful. San and Alyssa got haircuts. Nic and I watched a little of the Mecum Auto Auction – we are both Muscle Car enthusiasts – and he drove us over to the Clinic for the short 1:30 minute IV drip of fluids and steroids. We knew they would be busy in the morning, so our after-lunch arrival allowed us to scoot in (even got my favorite chair!) and get started.

There were some new folks in the room, all engaged in conversations so I didn’t catch names. Nic surfed the web looking at sites I had posted earlier from FB, plus a few of his own. We joked with Lauren and Monica, mostly about their reactions to the new series of popular novels getting so much throat-clearing press – Shades a Grey. Jan left before we arrived. And before we knew it, it was another round done. 

*** 

Today is Friday and by 4:30 I should be fanny-pack free! Hurrah! Time for a decent shower, a dinner, and some tv before reading myself to sleep. I’m already smiling.

As I noted earlier, this week – today, in fact – marks the first year anniversary of my initial diagnosis. It is truly a cause for celebration, as any reader of this blog knows. I have beaten – we all have beaten – the statistical prognosis. As we enter Year Two we hope to continue to beat the odds and will be doing whatever we can to ensure a quality of life that is more than just staying alive. It is staying alive with a positive attitude, with prayers and poetry and with the hope inspired by them, and with the love and support of all of you. 

So, the end of your day today, please lift a glass of your favorite beverage and join our family in celebrating not only what Rare Earth calls “another day of livin’ … Another day of li-i-i-i-fe!” but moreover a year of surviving cancer and another year before us of continuing the good fight.

If you need some lyrics to accompany the quaff, try the last verse/chorus:

“Well I can't be bothered with sorrow, 
and I can't be bothered with hate, 
I'm using up my time by feeling fine ev'ry day. 
That's why I'm telling you, 
I Just Want To Celebrate 
I Just Want To Celebrate another day 
I Just Want To Celebrate another day of living, 
I Just Want To Celebrate, another day of life. 
Don't let it get you down, no, no, 
Don't let it turn you around and around 
and around and around and around.”

Cheers!!!

 

***

Speechless in Phoenix

“Sometimes it takes darkness and the sweet
confinement of your aloneness
to learn
anything or anyone
that does not bring you alive
is too small for you.”

David Whyte, “Sweet Darkness”

 

Twice this week I have been rendered alive and speechless by dear friends who also happen to be valued colleagues.

The first episode of speechlessness occurred when Amira de la Garza shared with me the progress she, Bob Krizek, and Nick Trujillo have made getting commitments from scholars for a festschrift based on/been influenced by my work. For those readers unfamiliar with the sometimes serious, sometimes comic academic genre know as a “festschrift,” click here.  Details for the volume edited by Bob, Amira, & Nick:

SUBMISSION GUIDELINES

1.  Provide your name and affiliation and address, as well as contact email and phone number for Bud (even if you think/know he already may have it.)

2.     Prepare a 150-250 word narrative of how you have known Bud. Tell us how you met, what he means to you, etc.—it’s up to you.

2.      Prepare an essay up to 4,000 words in length that demonstrates how his work has influenced your scholarship.

3.      The deadline for receipt of these essays is June 1, 2012.  It is very important to have timely submissions because of the time-sensitive nature of the project.  We would like to give Bud a copy of the bound collection in time for him to respond to each of the contributors should he wish to do so.

4. We ask that you DO NOT submit your contributions and questions by simply hitting "reply" to this message, if possible--to help us keep track of your individual messages.

Questions about your manuscript submission should also be sent to celebratebud@gmail.com.

After the manuscripts have been received, we will have a sense of the cost of a copy of the original festschrift collection, for those of you who would like to purchase a copy.  It is being published by the Innovative Inquiry Initiative at Arizona State University, and all proceeds from the sale of the collection will go toward a fund for an award to be presented each year at the NCA Ethnography Division meeting.  Bud and his wife, Sandra, have been working on the criteria for this award.

The NCA Award will likely be called “The Bud” (!) and will honor a published work in narrative ethnography that exemplifies excellence in storytelling informed by scholarship and intended for both scholarly and public audiences. San, Nic, and I are very excited about this award and grateful to Nick, Bob, and Amira for putting together the book whose sales (along with other contributions) will launch it.

***

I first encountered the festschrift when I was a doctoral student at Penn State. It was on one of the stacks in Old Pattee library, a slim volume dedicated to a guy I’d never heard of; an historian, maybe. I don’t recall.

What I do recall is holding the little black bound book in my hands and feeling a hoped-for connection to the best of academic life, the sort of collegiality and respect for work that leads otherwise busy people, themselves clearly accomplished scholars, to produce such a thing. It’s not the sort of publication that leads to wide readership or a merit raise. 

At that time I could not have imagined that one day I would be the subject of a festschrift. In fact, part of my speechlessness is due to the fact that I still have trouble believing it. But it sure does make me smile. [image error] 

***

The second Bud episode of speechlessness occurred when Norman Denzin send me an email. Norm is a distinguished professor of all kinds of things (truly he is a “polymath”) at the University of Illinois and also the force behind an annual conference known as the International Congress of Qualitative Inquiry. His email message said, simply, that he was dedicating this year’s International Congress for Qualitative Inquiry to me.

The IAQI has been an intellectual home as well as a gathering place for those of us who use qualitative research methods in a wide variety of fields and subjects. Under Norm’s leadership it has grown from a handful of narrative, performance, and qualitative scholars in the U. S. to a global education and political movement that spans all continents in over 55 countries, and 40+ disciplines, and that sponsors (through Left Coast Press) the publication of books, edited volumes, and three academic journals (with a fourth in the workings) annually. 

The conference at the University of Illinois is a major highlight for those of us who draw strength and new ideas from each other, and I hated to miss this year’s meeting. But my health just wouldn’t allow it. I was able to Skype in for a few minutes during Sarah Jane Tracy and Chris Poulos’s writing workshop, and that chance to participate – even via a screen and for a little while – made my day.

On Thursday, Norm read the following statement to the 1500+ delegates at the general assembly:

“Bud Goodall is not able to be with us this year. He has been a guiding force since the first congress.  I want to dedicate the 2012 Congress to Bud. His spirit hovers over all of us, and he will be sorely missed.”

Pretty cool, huh? I read it in his email and had a big ol' man cry. My pals attending IAQI this year tell me that the statement was well received. Again, I am rendered speechless, deeply honored and most of all, overwhelmingly grateful.

*** 

But I have put the speechlessness behind me. I have another reason to be happy this week and this one will require a lot of talk, a lot of laughter, and at least a glass of wine or two.

Today I am awaiting the arrival of my almost-lifelong friend, Stew Auyash. Stew and I met at UNC-Chapel Hill back in the fall of 1973, both of us new to grad school and to the South, he in Pubic Health Administration and me in Speech Communication, both of us residing that first semester is the old Craig Towers graduate dormitory. By the end of the semester we rented a 10’ x 60’ single-wide mobile home “out in the country” beyond Carrboro and there, singing James Taylor’s “Carolina on my Mind” with our friends, and engaging life for all we could squeeze out of it, we forged a great friendship that has lasted ever since. He is flying in from Ithaca, New York, where he has been on the faculty and serving as an administrator since 1982 at Ithaca College. 

Stew visited us earlier in our Cancerland experience. We had a jolly-ol’ time and I’m sure we will do more of the same this weekend. It’s true, I am somewhat “diminished” since his last visit, but that won’t dampen my enthusiasm. With friends, you just don’t let the cancer keep you down. At least, not yet. We still have too much left to remember.

So I say: “let the speechlessness end,” but with no end in sight for the gratitude I feel to those who continue to enrich our lives. For the "alive" they bring to us. This has been a great week! So this big smile is for you, kids … 

***

A Good Week of Answered Prayers and Continuing Wonder

“Which are the magic

moments in ordinary

time? All of them,

for those who can see.”

--Tim Dlugos, “Ordinary Time”

This has been a week of good news, visits, gifts, a graduation, and much happiness. We are truly blessed and very grateful each and every day. And blessed also for the wonder of another starry, starry night.

The good news was reported on Facebook right after we received it from Dr. Robin on Wednesday afternoon – my CA 19/9 marker is reduced by half, from a high of 1900 to 908 – which is a good sign as this marker has been an accurate index of my rogue cells. This week’s treatment will be followed by another blood test in 11 days, just before the “final” treatment, by which time – fingers crossed – we hope to be cancer-free again and get a little time off from chemo.

We had a wonderful evening on Wednesday following that good news, as our colleagues Sarah Jane Tracy, Belle Edson, and Dan Brouwer came over for a visit, some fine wine, cakes, and conversation. They entered the house carrying a large package that had been left earlier – a delightful (and so far delicious) array of goodies representing the UK’s best cookies, candies, and other treats, as well as a wonderful new cookbook, A Girl and Her Pig, April Bloomfield. This “care package” was from my editors/friends at Bedford/St. Martin’s, Erika Gutierrez and Simon Glick. They had read my post about not being able to participate in the UK Summer Abroad Program this year and wanted to provide some sample treats.

On Thursday our beloved niece and her wonderful husband, Tori and JohnCarl Hastings, flew in from North Carolina for a long weekend visit, just hanging out and enjoying our time together. This is a nice respite for a couple of hard working divinity students (Duke U) who return next week to take up respective summer internship posts at two different churches in North Carolina.

Yesterday Alyssa graduated from the University of Arizona with a BS in Psychology and a minor in Sociology. She is graduating a year early – hurrah – and will enter the MA program in Communication at the U of A in August, complete with generous teaching assistantship. Nic leads her cheering session, but we are all very proud of her.

All in all, an excellent week!

*** 

On the Clinic side of life there was also good news for so many others who are getting treatment. Our pals Felicia and Don are doing exceptionally well a month off of chemo. Dustin, who did not look or feel good the last time we were in was in much improved spirits and had his smile back, as did Amber, his wife. Other patients we also know are doing well and the only downside to the Clinic this week was seeing how busy they are with returning and new patients. It’s a mixed blessing, for although we know there isn’t a better place for care, it is also sad to see so many of us needing it.

Yet once again we have to give a big shout out to the oncology team and staff at Four Winds. No matter how busy they are, they make sure all of us feel personally cared for and valued. We also learned that the practice is expanding to a new facility later this summer, larger, and that Dr. Robin is bringing in a new doc as well.

I just wish that the cancer business, the expansion of it, wasn’t quite as necessary.

***

That said, if you follow cancer treatment research there is lot of good news lately, as new ways to fight this damned disease in all of is manifestations are being found and tested.

Perhaps the biggest breakthroughs are occurring in the genetic research that extracts cells from a body, “teaches” them to recognize cancer cells, and are then re-injected into the same body of the patient. Why is this big news? Because the main reason cancer is so insidious is because our bodies don’t recognize these rogue cells as foreign. So our immune systems don’t attack them. If scientists can find ways to teach our own cells to recognize and to fight them, we will have “cures” that work “organically” with our own individual DNA. This is, of course, my own non-scientific description, but I think you get the gist of it.

There are many other new approaches that also show promise. One study was passed along to me by my colleague and friend, Pauline Davies. She and her husband Paul are part of an innovative interdisciplinary team bringing the world of advanced theoretical physics and other non-traditional theories and methods to bear on cancers. Just back from a conference, Pauline had attended a lecture about the surprisingly positive results of a “fasting” approach to reducing or even eliminating brain tumors. When she approached the presenter and asked about whether or not this approach might be successful in treating pancreatic tumors (thanks, Pauline!), the answer was “I don’t see why not.”  The biggest obstacle? No financial support from pharmaceutical firms for field tests; there isn’t a drug to be manufactured and distributed, so there is no discernible profit to be made.

That is not the first time I’ve heard of this response. To be fair, pharmaceutical firms are for-profit entities and to remain viable as businesses they rely on what they can discover, test, and sell. It is an enormously expensive undertaking, the risks are high, and results are never certain. And improvements in cancer treatments via chemotherapy and other means that require drugs have allowed people like me to live better and longer than ever before. So while I do understand their reluctance to go into partnerships for cures where there is no profit in it for them, I also am proud to live in a country that uses even a relatively small portion of tax revenues to support scientific research, especially research that could not be conducted without those monies. I would like to see the government invest even more.

In 2011 the U.S. government spent 17% of the Federal budget on health care, including the money for Medicaid, the National Institutes of Health, the Centers for Disease Control and related programs. Of that total, $5.1 billion was given to cancer research.

So the next time someone you know balks at our government spending money to support cancer research (as well as programs that pay for Medicare/Medicaid and other services for cancer treatment), remind that person that no all paths to cures are funded by the private sector. And then tell them that you’ll pray they, or someone they love doesn’t have to suffer from one of the cancers that may be successfully treated or even cured by non-pharmaceutical means.

Given the growing number of cancers and cancer patients, is this a gamble that anyone ought to take?

*** 

Sunday is Mother’s Day! In our home, Nic is in charge and we will be celebrating in high Rabbit style. I don’t care if it is a “Hallmark Holiday” and yes of course we should all treat our mothers as the special people they are each and every day of the year. But this year, for a lot of reasons, Nic and I are especially happy! San has had one of the most trying years of her life, has kept a positive attitude and love in her heart, and has done everything she can do to make our lives a joy every day.

I am – we are – also celebrating grandmothers. In our case that is Martha Bray, wife of the lucky man known as Clarence, and mother to three children: San, Rick, and Kate. For those fortunate enough to know her, Martha is a force of nature, a “can-do” attitude and loving heart teach us how to live well and fully by example, and her fun-loving nature provides all of us with many memorable times.  I am also remembering my own “granny,” Nellie Grimm Saylor, who told me I was “a happy soul,” a line that helped me understand a spiritual part of myself, particularly when I was in doubt about all of that.

I am also celebrating my own mother, Naomi May Alexander Saylor Goodall. I am remembering the amazing and difficult life she led, the good mother she was to me even when times were tough, and I am newly appreciative of those last months of her life when, as she lay dying from stomach cancer, we had those “final conversations.” It was December 22, 1983; she was 66 years old. I held her hand when I finally agreed to take no more measures to prolong her misery – for her life was miserable by then, with a body no longer functional without the aid of machines and bloated by heavy does of morphine – and she blinked her assent. For her it was over almost instantly. For me, well, honestly, I’ve never gotten over it. But this year I have learned many lessons that have helped me do exactly that. And along the way to forgive myself for making that final decision, that necessary decision, and to sign the papers so my family won’t have to.

Hospice care and end-of-life issues these days are better managed and understood. Here again research is useful –particularly health communication research – and newer and better approaches to death and dying – as well as learning how to live with cancer – are every day being found. A “terminal” sentence isn’t what it used to be. And Jan – this one’s for you – reminded me that her father (or was it her mother?) lived 30 good years with a terminal sentence. 

So on Sunday let’s remember our mothers and grandmothers and stepmothers. Let’s remember the best of their lives, the lessons they taught us, the love they shared.

*** 

I am feeling very good, my friends. This has been a terrific week! Now the school term is behind me and I look forward to the summer ahead, even though we won’t be visiting the UK. There are plenty of good things to do. Friends to see. Meals and good times to share. Movies. Books. Who knows? If this cancer treatment works as we hope it will, we might venture out for a road trip or two. It’s all good. It’s all very, very good.

Thank you – all of you – for your continuing love, friendship, prayers and support. It takes just such a community to make all of us well.

Each gorgeous morning and starry night please join me as I give thanks for another day of this good life and all of you who help make it possible … and for the mystery and continuing wonder of another starry night.

“I've loved the stars too fondly to be fearful of the night.”

- Galileo Galilei

Things We Take For Granted ... Until

The first sign of trouble with our air conditioning was on Monday and it was an obvious sign: adjusting the thermostat down to 78 degrees didn’t produce the usual start-up whir of a electric motor nor the reassuring whip-whip-whip of a fan. Adjusting it down further – to 75, then to 70, then all the way down to 60 met with the same aural absence and a gradual admission that, in fact, we had a problem.

In Arizona we respect air conditioning. It’s May but last weekend the temperatures hit 105 degrees Fahrenheit. This week we were experiencing a cool spell; daytime temps are still in the mid-90s. Yes, it is a dry heat. So is the heat in your oven.

Ah, the things we take for granted until … we can’t.

***

On Tuesday morning San got in touch with Gary, our landlord, who lives in Iowa. Gary is a good guy and once San explained our situation he immediately approved getting a repairman in to fix it. San made more phone calls and by mid-afternoon we had a diagnosis (bad motor; frozen unit; some leakage), the air conditioning unit was repaired, and a new motor was installed.

That was when the second problem emerged: the water damage from the leak revealed a nasty mold that needed to be dealt with before we could safely turn on the air conditioner. More phone calls to Gary, to an insurance agent, and to a mold specialist. During one of those calls San mentioned the “C” word in relation to our need to resolve this problem in a timely manner, and that was when we learned that the reason we couldn’t turn on the air with mold present is that a person with a “compromised immune system” (that would be me) is at risk from the mold spores when they are released into the air. Depending on the extent of the problem, this could mean some extreme measures to kill the mold, to “scrub” the air in the house, as well as power vacuuming to ensure that no spores are present on the furniture, countertops, clothing, even on the fur of our cat.

The cat heard that. “Merrrooow!” Monkey said. He then retreated under Nic’s bed.

I did not make that up. 

The good news (for the cat) is that he is now safely and comfortably boarded at a “pet spa” where the air conditioning works just fine. Monkey is a cat that cannot be without his cool.

The other news is that we are still waiting for verdict from the insurance agent that must be given before the repairs to the drywall and floor can take place, which is to say that we are still without air conditioning.

*** 

Before you think me a huge wussy for complaining about the heat or think maybe we’re just plain stupid for not moving into a motel or a friends’ home while the repairs are taking place, allow me to provide some backstory. 

Another one of the things we take for granted (or at least I used to take for granted) is the ability to lie down flat in our beds. This seemingly simple activity then usually results in sleeping, but it is something I have not been able to do for the past two weeks. When the cancer spread into my back I could no longer lie flat on it. The pain meds are helpful in dulling down the ache, but lying down is still uncomfortable and rising up from a prone position still produces a sharp pain across my back and some difficulty in breathing. So it’s easier not to lie down. After trying out several options – the couch, two recliners, and (again) the bed while propped up by pillows – the best option is one of the recliners. I don’t know why. But I can sleep in it, and that’s the important thing.

So much for the wuss defense. But what about the idea that we might just be stupid? Why not just relocate our little family into a nice comfy air-conditioned motel?

Motels don’t have recliners. So relocating our little family makes little sense. I wouldn’t be comfortable nor would any of us be able to sleep. Although I hate to admit it, when Bud doesn’t sleep, nobody sleeps. Now it is true that San could make good on her threat to “pill me like a dog” and achieve some relief, but we aren’t “there” yet in either our heads or hearts. And in the interests of keeping some sense about me, I am only using minimal doses of the good stuff. I still like to be able to think more or less clearly. I think – and hope – that my mind is the last thing to go.

And yes, friends have offered the comfort of their homes. But that, too, would require a lot of shuffling back and forth between there and here while the repairs are being made and I still can’t sleep in a bed and besides, it’s really not that hot yet. 

So, all things considered, better to tough it out sleeping in the recliner with the windows open and the ceiling fans on. At night it dips down into the 70s and really is quite pleasant.

*** 

There are other things I can no longer do that many of you probably also take for granted. Some of them are private things and will remain unspoken. But others are not all private, just sad in the way that any body known to be in the process of dying is sad.

Once, not too long ago, I took for granted taking long walks. Now the longest walks I can take involve pain medications to get me from the house into the Honda, from the Honda into the Clinic, and from one aisle to another in a grocery store. Each step is a conscious exercise in willing myself forward while keeping my back straight and my balance true.

I don’t know which is worse, not being able to feel my feet and lower legs, wherein a misstep can mean I fall over, or being acutely aware of the ridge of constant pain along the bottom of my shoulder blades, wherein if I allow myself to lean forward a searing twinge of pain cuts across the whole of it.

But it’s not a choice, either. Both the numbness and the pain are always present. And yes, I know I could swallow another pill and get rid of the pain, maybe entirely. But then what? I’d be numbed into a long dumbed-down semi-sleep that is at best a dim shadow, a weak echo of real life. I’m not “there” yet, either. So I’ll take a little pain, a little numbness. A little more of the full range of reality in what remains of this life …

***

Once, not so long ago, I used to derive a lot of pleasure from cooking, especially new dishes that required time spent in preparation, skill with tools, and the happy anticipation of bringing it to completion for family and friends. I haven’t done much cooking since the neuropathy in my fingers met the sharp lesson of the knife. I didn’t feel a thing but there was a lot of blood! After that happened, San and Nic took over knife duties. And I returned, however reluctantly, to the blue chair.

I still try. This morning, for example, I fried an egg, made some toast, put the fried egg on the toast and found the whole process both a little painful (my back doesn’t like me standing on hard tile floors) and fairly exhausting. It was only a couple of months ago that I could spend thirty minutes or longer making a Greek omelet and not think twice about it. I can’t even imagine doing that now.

Here again, San and Nic have taken over kitchen duties and there is nothing to complain about except that I am not the guy cooking. They go out of their way each and every day to make delicious meals, foods that I find interesting and that we can all enjoy together. I’d be an ungrateful fool to complain. Theirs is a constant gift of love.

It’s just that I miss what I can no longer do. I miss the “me” who used to do things. The “me” who took for granted all the things I can no longer do. 

*** 

If you are regular reader of this blog you know I rarely complain. It’s just not my style. And it doesn’t help. Instead, I’d rather accentuate the positive and celebrate what I still can do. So pardon me if this post isn’t up to my usual stuff. 

But it’s also true that I have sworn to tell the truth, to be as transparent as possible about this disease and how we deal with it. So once in a while I do give in to my inner bitch and, like Monkey at the prospect of being vacuumed, let go with my own version of “merrrooow!” Sorry about that!

Here’s a happier thought to end on. This Saturday there will be an amazing “supermoon.” The noted astrologer Richard Nolle (and Friend of the Rabbit) defines it this way: “a full moon that occurs within 12 hours of lunar perigee, or the point in the moon's slightly non-circular monthly orbit when it swings closest to our planet.” 

This Saturday the timing of the two events will be unprecedented: the moon will reach its perigee distance of 221,802 miles at 11:34 p.m. Eastern Time, and it will fall in line with the sun (thereby becoming full) one minute later. Because of its closeness to the Earth and this rare cosmic alignment, the moon itself will appear to be huge!

Watch out! A huge moon changes all tides. Supermoons are therefore often associated with earthquakes, tsunamis, and a host of other disruptions and natural disasters that bring out the doomsday crazies as well as the interested scientists. The usual “window” for supermoon influences is plus or minus three days, so while I know I can’t blame the supermoon for the failure of our air conditioning system, you are certainly free to draw your own conclusions based on what events transpire between now and the end of the supermoon cycle on Tuesday. Who knows?

I don’t claim any special knowledge. And I have other things to do with that time.

One of the things I can still do is be dazzled by the sight of a supermoon. In the Grand Scheme of Things (GST) that you and I are already part of, the appearance of it reminds me that while a natural part of the body dying is about learning to accept what I can no longer do, another part of that same process has been opening myself up – my mind, my heart, and my soul – to a narrative rebirth of awe and mystery and wonder.

I think that is what I am supposed to be doing with this time.

When You Hear Troubling News, More Friends and Stories Like These, Please

If you have been following my progress on Facebook you know this has been a week with some troubling health news. As I put it in my post on Wednesday:

Thanks to everyone who posted prayers and best wishes earlier today. The news is (1) Round Two went fine, although I did have a minor reaction to one of the chemo drugs and was administered Benadryl via IV - it worked perfectly and no biggie overall; (2) the results of the bone scan show that the pain in my back is being caused by two small spots along the ridge of my left and right shoulder blades, both of which are evidence of spread of the cancer into a new region, but (3) the current round of chemo is attacking it, and the pain can be managed with slow-release OxyC.

After Round Four of the chemo we will rescan, reassess, and consider the option of targeted radiation. Bone cancer is slow moving, so we have some time and some options. In the meantime, I am back to feeling good (got the pain meds regulated) and continue to be oh so grateful for the love of my family and friends, as well as the care, compassion, friendship, support, and knowledge of my doc and caregivers in this Four Winds community.

On the same day we received this update – the day of the long chemo that kept me in the Orange Chair well into the early evening – I had to miss the Hugh Downs School of Human Communication end of the year celebration. However, when I checked my messages later that night I found out  – much to my surprise – that I had won one of two teaching awards voted by on by the graduate students! Hurrah! The other faculty winner was Kathy Miller, a dear friend and talented colleague who I’ve always admired as a teacher as well as a researcher. Good company, huh? No, GREAT company! Big smile on Bud’s face, I can tell you!

When such good news follows such bad news – and the spread of any cancer is never anything but bad news – you choose which news to focus on. I chose the good news. Why wouldn’t I? Not even cancer can take away the joy of being recognized for something I love to do.

This is my life’s work. This is part of my life story.

***

I am a teacher. I have worked hard to become the best teacher I could become. But good teaching is always a collaboration between the instructor and the class, between the stories and the theories, an among a curious and often surprising blend – sometimes a balancing act – of information and intimacy, of narrative and dialogue, where both parties must feel safe enough, secure enough, to take risks with ideas and selves, and ultimately to become in the truest sense of dialogic understanding, profoundly open to learning, to questioning, and to personal change. For this reason, any award for good teaching is also an award for the students who shared in the collaboration.

To accomplish that communal goal and to know that in so doing you and the students have positively influenced each other’s lives, well, as a teacher and as a student it doesn’t get any better. It’s an experience, a sacred experience, good enough to help beat anything that ails you. Or me. At least for awhile. A blessed while. 

***

The next morning I had another welcome surprise. A visit from an old friend can do wonderful things for your spirit, particularly when the two of you can pick up on unfinished conversations and, in some cases, complete them and in other cases leave them deliciously simmering for the next time.

Our visitor was Carl Lovitt. I’ve known Carl since 1991, back when we were teaching at Clemson University, swapping life stories over scotches on pool night at the corner tavern or over slap slots on the tennis courts. We have children about the same ages and our wives became friends, so our time together in Tiger Town was rich with good memories and lots of stories. One story in particular stands out and Carl and I revisit it again during his visit. 

Our day jobs at Clemson included a “risky” collaboration on a new Masters degree in Professional Communication that relied on ties to the international business community growing up around BMW North America, a partnership with IBM, and the audacious idea that combining technical and language skills with organizational cultures approaches to worklife would best prepare students for creative and potentially lucrative careers in the emerging high tech marketplace. Under Carl’s leadership and with the work of talented faculty (Art Young, Pete Kellett, Dixie Goswami), the once “risky” venture became the top ranked program in the country and was featured in The Princeton Review, Newsweek, and several business-oriented magazines. It was a busy time, a heady time, a good time with professional accomplishments and friendships that have lasted ever since.

Carl is now serving as Provost at Central Connecticut State University, where once again he is working on what he loves: improved undergraduate teaching, applied programs that appeal to the local community, and finding new and better ways of making the college experience more open to innovation and a more valuable investment for students and their parents. We need more leaders like Carl. We need more conversations like that.

We need more stories like that.

***

Carl also wanted to see the Room of Orange Chairs, so he accompanied San and I to the Four Winds Cancer Clinic. It was Friday, a slow Friday for the staff, and I was only in for fluids, steroids, and the removal of the fanny pack/chemo pump. Monica was running the shop and once again her positive and caring nature made the time pass quickly. Doctor Robin also stopped in for a friendly chat (and to see if my new pain meds were working), and Ashley and Sue came in to visit. Sue is leaving the clinic to return to care for her 95-year old dad in Chicago, so seeing her and knowing this would be the last time was a bit of a teary moment.

Carl follows my blog and knew the prose version of this special community but I think he came away from the clinic experience not only affirmed by how I have represented the people and place, but also happy for us – if a close friend gets this damned disease, this is the place you want him (or her, or the family and friends) to be cared for and treated. I’m sure there must be other places such as Four Winds elsewhere but I know we count our blessings each time we come away from here. My pancreatic cancer cannot be cured but our experience of living with it and the support of these professionals and our community of patients couldn’t be any better.

We also need more stories like this one.

***

After the treatment and the usual round of hugs and best wishes, we headed back home. I enjoyed a shower (can’t bathe properly when wearing an electrical chemo pump) and San (with an assist from Carl) prepared us a great Mexican feast – slow-roasted carnitas, fresh flour tortillas, homemade guacamole, salsas, chips, chipotle pinto beans, cheese, sour cream, lettuce, tomatoes … ah, it was a real treat! 

Carl and I were both enjoying a near-comatose half-sleep conversation about the very cool Intellectual Entrepreneurship program at the University of Texas, or at least I think we were. Whatever we were talking about faded gently into a mutual recognition that for today, we were done.  That recognition brought the evening to an early close, but just as well – Carl, an avid golfer, had an early tee-time and I needed my beauty sleep.

Hey, you don’t think people keep telling I look good without a little beauty sleep, do you? No way. At night the nine beauty fairies from the planet Venus wait for my eyes to close and then cover me in a magic glowing golden dust.

What, you didn’t know that? [image error]

*** 

This morning I was struck by two posts on Facebook; the first one from Barbara Avila Marvin, via Joseph Campbell, Pathways to Bliss:

"In a wonderful essay called 'On an Apparent Intention in the Fate of the Individual,' Schopenhauer points out that, one you have reached an advanced age, as I have, as you look back over your life, it can seem to have had a plot, as though composed by a novelist. Events that seemed entirely accidental and incidental turn out to have been central to the composition...

The second one taken from Ernest Hemingway:

"There is nothing noble in being superior to your fellow man; true nobility is being superior to your former self." 

Together these two observations sum my week. It is true that my life has had a plot and that events in it have been central to its composition. It is also true that the life story I would want to compose, or would like to have been the subject of, or wish for others including my students would be one that featured the ‘true nobility [of] being superior to your former self.”

For what is life if not a quest for transformation? For self-improvement that brings with it service to others? For overcoming the temptations of ego and discovering a purpose greater than the gratification of the self?

When I pray for others I pray for their healing, for their peace, and for the positive spirit of hope gotten from God, the universe, and each other that may help them navigate new challenges. When I pray for myself, I pray that my life story fulfills its transformative quest.

This week I have been rewarded in ways that make me believe that my life story may yet achieve that desired end. Despite some troubling news, it has been a very good week indeed.

More stories like these, please …