End of the world—reprise 19

There were several options available to us when Diana’s tumor started growing again in April 2009. For the first time, surgery was on the table with curative intent. As attractive as that sounded, it made no sense to go through such an invasive procedure with possibly debilitating life-long implications if there were still microscopic outposts of cancer elsewhere in her body. With metastatic cancer like Diana’s, that is always a possibility for the patient and a near-certainty according to the oncologist. On the other hand, another round of targeted radiation was minimally invasive, yet far from definitive and certainly not curative. The Seattle Cancer Care tumor board could make no clear recommendation about treatment because there was nothing clear about Diana’s extraordinary case: “Your guess is as good as ours.”

Diana wasn’t content to guess, and we also had a third option available to us that wasn’t among the considerations of the tumor board: the return to full immersion in everything Eastern. Diana plugged into her incomparable brain all the available data on her tumor, the assumptions and caveats about her condition, and the projections and probabilities of the treatments. Instead of a convoluted hypothesis, she posed a simple question to the trillions of cells that make up who she is: What do all of you want me to do? Then she descended into herself to dance with goddesses and mitochondria, to negotiate the interstitial spaces and allegorical voids, and to consult and console the errant cells in the upper lobe of her left lung and the surrounding tissues that harbored them.

She did this several times over several days and finally got her answer: Surgery. That scared her. It scared me. But she was unequivocal about her intuition and trusted it completely. And that was fine by me because as it happens, my intuition was simply to trust hers.

This was not an easy surgery to contemplate. No one had ever removed a lobe of a lung that had been irradiated with such intensity. There was a long list of things that could go amiss. Uncontrollable bleeding from a brittle artery that might disintegrate under the scalpel was mentioned. So was death. Only a very slim chance of that, of course. Probably about the same as Diana being alive three years after diagnosis. For me, that particular margin didn’t carry the weight it used to. The surgery could be a beginning of days, or it could be the end of days.

Live each day as if it were your last. As if it was your last. Whatever. Whichever. Don’t waste any of it worrying about grammar. That classic last-day sentiment is something I heard often throughout Diana’s treatment. I almost certainly paid it lip service more than once, and likely passed it along, too—but alarms kept going off in my head every time I thought about it.

I think it was the frenetic urgency that made it unattractive. And the pressure! If I indeed had just the one day to live, or in this context, the one last day that Diana and I would be together, what would I do differently, really? That my mind automatically went to either 1) regret about what I might’ve done that requires amends, or 2) regret about what I haven’t yet done (but want to) that might require amends generated an artificial desperation in which I found myself with one foot firmly in an unlikeable past and the other in an unlikely future. I wouldn’t want to spend my last day like that. I wouldn’t want to spend any day like that.

Diana and I had been more interested in making a day last than making a last day. The question for us was not so much about ticking off items on a bucket list, but rather how can we move a moment into the eternal, the realm where time has no meaning, where in fact meaning has no meaning.

By the time Diana’s surgery rolled around, I had already discovered that I had neither the experience nor the imagination to adequately anticipate the marvels of this universe—or any parallel, intersecting, intertwining, or diverging universe, for that matter. I had historically shortchanged them all. I still do. So I try to be careful about what I wish for. I hate being limited by my own imagination.

When Diana was getting her initial chest x-ray in April 2006, I had hoped it wasn’t pneumonia—that, to me at the time, would’ve been bad news. I got my wish. It was Stage IV hopeless Lung Cancer, instead. But I can’t even say that result was bad news. We’ve loved the life we’ve been living since then. While each time the tumor grew would seem an obvious turn for the worse, some opportunity would simultaneously appear that would bring us closer to actually getting rid of it altogether. The prospect of the lobectomy surgery seemed to be good news. That the surgeon may be unable to complete it sounded like bad news. Neither was either.

Of all the books I’ve read in the past seven years, the one that has stuck with me the most was ostensibly written for children by Jon Muth. In Zen Shorts a giant panda named Stillwater relates a different tale to each of three children. Each of the tales is short, provocative, appealing, and likely appears in traditions other than Zen. In one, a Chinese farmer loses a horse. His neighbors offer condolences: “What bad luck!” to which the farmer replies, “Maybe.” The horse returns the next day with a wild horse in tow. What good luck! Maybe. The farmer’s son tries to break the wild horse, but is thrown and breaks his leg. What bad luck! Maybe. The Chinese army sweeps into the village and conscripts all able-bodied young men, ignoring the farmer’s son. What good luck! Maybe.

“Maybe” had never reached such heights for me. Its previously record was the top of the fence, the epitome of indecisiveness, procrastination, or an outright dodge on its way to becoming a lie: “Can we go to Santa’s Village someday, Dad?” “Uhhh, sure, maybe.”

These days I’m a big believer in “maybe”. The Chinese farmer wasn’t avoiding a decision or withholding an opinion; he was simply acknowledging that he lacked the information to fill in the long view. I certainly don’t have it. I’m not even convinced it’s available. But openness to possibility is.

Diana’s surgery was extremely difficult, prolonged, and…successful. For the first time in three years, there was no visible cancer in her body. It is now four years later and there is still “no evidence of disease”. Is she completely cured or is it still possible there is microscopic cancer somewhere, somehow, sometime? Maybe.

Does it matter? Not really. If there’s anything I’ve learned in the past seven years, it’s that nothing is the end of the world. That’s not exactly right. Nothing has to be the end of the world. If it seems like the end of the world, then I usually find I’m looking at it too narrowly. I’ve confined it. That’s not the world ending; that’s me ending the world.

19 thoughts on “End of the world—reprise

  • Reply
    Barbara Brachtl

    This is amazing — amazingly thought- and feeling-provoking. I would read one paragraph and think, “yes….” and then there would be another paragraph with something new and just as meaningful. I’d have to say, though, that my favorite line is “one foot firmly in an unlikeable past and the other in an unlikely future.” Sigh. I have certainly lived that way. I look forward to your next post.

  • Reply

    Kelly, I’ve read this three or four times and I’m speachless in finding words to respond. You’ve shared some important feelings and ideas about Life and Love and Healing that are about the Great Mystery and beauty of the Empty Mind.

    All I can say is keep writing, not only these blogs, and your story as Caregiver with Diana, but other Life Adventures. Much love, Roberta

  • Reply
    Carol Kerley

    I learn from each of your posts and both Linda and myself are so appreciative of the wisdom and hope the two of you have given us during our own journey.
    Life is good and learning to live in the moment is like a new born’s first steps for us. Thank you for sharing with all of us.
    The best to the two of you.
    Carol and Linda

  • Reply
    Shannon Journigan Bolen

    So glad to hear of Diana’s improvement. Your blogs our very beautiful and insightful. I pray that your past journey has ended and that you are now on a new one of wellness and great adventures that will leave you with breathless happy memories. My thoughts are with you both.

  • Reply

    Kelly, you have an increadable voice in your writing. It has been an honor and a privilege to read your posts!! Know that we send positive thoughts and prayers your way!!! Give our best to Diana!! Hugs for you both!

  • Reply

    the book is unfolding in front of us…what a gift! bravo kelly for writing about life and its astonishments and making it visibly the miracle it is….. love you both! tandy

  • Reply
    Ellen Collord

    Kelly-I well remember that time and yet I had absolutely no clue what you all were going through. We made a plan to come see you both right after the surgery and although I knew it was a serious surgery, my life experience with Diana was/is that she always pulls through-with grace and courage. You both were kind enough to allow us to come. Your story is so inspirational and humbling at the same time. I am ordering Zen Shorts. Looking forward to seeing you both soon. xo

  • Reply
    Jack Pelletier

    Kelly:”Does it matter?” you ask. Life has taught me that it does in a very special way, which can be best framed by this question: “Who’s there when we most need being gathered up and loved?” Reading through “Something More…,” one would have to be terribly insensitive not to recognize in almost every word your love for Diana, and I firmly believe this love played a significant role in her surviving a surgery whose outcome was at best uncertain. When I finished “Something…” one of my favorite poems came to mind, “Gather Me” by Barry Herem, which I’ve shared with many friends and hundreds of students who needed “gathering.”

    Gather Me
    As you would divided stalks of grain,
    you may gather me that way,
    All my particulars.
    When I am slumped, care-creased, and very tired,
    then gather me.
    When I grieve,
    When I turn away most, baring my back,
    then gather me.
    Gather me when my legs are down
    And when my eyes are gray,
    When I lean away, gather me as you would some leaves
    on cool
    September mornings.
    Bring me to your breast when I refuse to speak,
    Bring me as you would some bloom,
    up to your lips,
    And gather me in spite of taciturnity and tears.

    Kelly, by the time you and I shared a classroom, I had not yet decided on my top ten poems. But when I did, “Gather Me” was high on the list because we don’t hold our own in this world by standing alone.

    - Jack Pelletier

    • Reply
      Barry Herem

      Dear Jack,

      I am the author of Gather Me which you have so thoughtfully shared with others. I have only just been made aware of your interest by another writer who has also favored it over the years. What a gratifying surprise to find that something I saw published 50 years ago – and had completely forgotten – has had meaning to others. I never knew. You might enjoy my full comments on this on my FB page. Be welcome. Thank you. Barry Herem

  • Reply

    As always you have turned our small world thinking upside down. The mind is mightier than the body. Each blog entry compels your reader to open their mind and let the sunshine of new thinking in. Thank you for once again provoking us to dream and believe.

  • Reply
    Chris Rich

    It is deeply moving and inspiring to see what you have both learned through an ongoing experience that would devastate most. You are an inspiring team, and may you continue to prosper!

  • Reply
    Larry Land

    I’m so glad to know that Diana is doing well. I’m sure your postings are a big help to many of us. They remind me of a school boy friend who was known to both Diana and me. His name is Jeff Maguire. In 1993 Jeff achieved some notoriety for writing the screenplay to one of that year’s best movies, “In the Line of Fire.” It starred Clint Eastwood who played a guilt-ridden secret service agent who spent the previous 30 years blaming himself for failing to prevent the Kennedy assasination. I first heard about the movie when I listened to a review of it on NPR when the commentator praised an “excellent screenplay by Jeff Maguire.” I asked myself if that could have been the same Jeff Maguire who along with me and several other misguided 10 year-olds organized a girl-haters club when we were in the 4th grade. He was the club’s president. A kid named Peter Byrne was Vice President. With the lofty title of “Govenor” I was the number 3 man. Was this the same Jeff Maguire with whom I had frequent over-nights, daily backyard baseball and football games? A few nights after hearing the glowing review on the radio, there was a prime-time interview on a major network T.V. show that was popular at the time and I found that yes, this was indeed that same Jeff Maguire of Old Greenwich, Connecticut who, as a 3rd grader was demoted to second grade in the middle of a school year because of his horrible hand-writing. At a high school reunion in 2000 Jeff and I reunited, and for several years thereafter exchanged emails. He lived in California, where he continued to write screenplays, and he would sometimes inform me of how competitive the environment is for writers hoping to be credited for their work. In the world of Hollywood, or major movie-making anywhere, your name rolling down the screen translates to major dollars. And I was astounded when he shared with me the big dollars at stake. These were dollars someone like me would take a near life-time to earn. The most poignant email reached me in late spring, 2005 when we were informed that Jeff’s 20 year-old son, Danny, his only biological child, had, while riding a bicycle, been struck by a car driven by a drunk driver. As a result, Danny suffered extremely serious brain damage. Over the three-year period following what he would always characterize in quotes as an “accident” (to communicate his belief that “accidents” really don’t exist) Jeff and his wife devoted themselves selflessly to the restoration of Danny’s health. They’d count it a major victory any time Danny might murmer a single-syllable word, or count to 5, or just do anything that might give them any reasons to hope. Jeff would frequently express his thoughts through long emails to hundreds of friends, and I counted myself privileged to be one of them. It seemed that progress was being made, until a sudden and shocking email that reached us in the late spring of 2008 that had on the subject line “Danny’s Passing.”

    In all of Jeff’s periodic emails through those three years, it was easy to read between the lines his relentless efforts to find whatever silver linings he could in that horrible life-changing tragedy. Or in other words his determination to find those things that “go right when life goes wrong.” At no time were there expressions of self-pity, or bitter rants against the drunk driver responsible for Danny’s death. In one of Jeff’s final emails reflectiong upon that 3-year chapter in his and his wife’s life there was a meditation by an eastern spiritual teacher with whom I was never familiar. I nearly came to tears quoting it when asked to do something I’ve always intensely disliked – publicly expose any, deep spiritual dimension to my personality, which I did when I was asked to give the invocation at a June, 2008 luncheon held by the Virginia Society of Association Executives, a rowdy organization with members best known for their love of alcohol. off-color jokes, and golf. I decided to use the occasion to talk about Jeff’s ordeal, and the special meditation Jeff circulated in one of his final emails about Danny. Here it is:

    if we feel for others in the same way as we feel for our own dear

    if instead of seeing faults in others, we look within ourselves;

    if instead of robbing others to help ourselves, we rob ourselves to help others;

    if we suffer in the suffering of others and
    feel happy in the happiness of others;

    if instead of worrying over our own misfortunes, we think ourselves more fortunate than many

    if we endure our lot with patience and contentment, accepting it as His Will;

    if we understand and feel that the greatest act of
    devotion and worship to God is not to hurt or harm any of His beings,

    we are loving God.

    Jeff and I continued to communicate after Danny’s death. He would frequently write about the joy he found in visiting with his nieces and nephews, or maybe relatives of his wife. Unfortunately the commications came to a halt within the past year or so. Whatever the case, it would be great to see Jeff and Diana, and many other high school friends at the reunion I expect us to have in 2015.

  • Reply
    Wendy Shearer

    “That’s not the world ending, that’s me ending the world.” Good one to think about. We “had been more interested in making a day last than making a last day.” Love also the parable “Maybe”. Jon Muth is such a great illustrator too, one of my favorites, Kelly. You’re a gifted writer. I’m taking a memoir class and love reading and listening to good writing. Thank you.

  • Reply
    Sharen Heath

    Very nice. Many take-aways (I try not to be limited by my own imagination…) from this piece. I’m reading it as I sit awaiting Simon’s heart doc. They’re zipping him up and his interrupted beloved heart is beating regularly again, this time with improved blood flow. Life IS good.

    Thanks for putting YOURS & DIANA’S out there.
    Hugs, Sharen

  • Reply
    Dave Alden

    As always, well-writtten and insightful. Thanks for sharing. May Diana’s good health continue. And may your blogging continue.


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