How strange: To wrest a guide to Life and Living out of a struggle with Death.
But perhaps it’s not so strange after all: In the great game of Life and Death, in the end, Death will win out. But it makes all the difference in the world — and to your life — how you run that course: Either in fear of the encompassing darkness. Or: With the zest that comes from contending directly with the Beast and besting it. Contending and besting confer all sorts of tools and knowledge and unexpected dividends, meaning: You can make use of the struggle, haul yourself out of the darkness and into the light. After all, are you in charge or is the disease?
Those who live with serious disease will know what I speak of (or not: I know some cannot “deal”). It is the “living with” part of the proposition that is the art to be achieved, the science, the craft.
In my case, I have been living with cancer (thyroid) for sixteen years now. When I was first informed by phone of my diagnosis, with no preamble at all from that doctor — just, boom, “You have cancer” (fortunately my husband Larry was nearby: I frantically waved at him and mouthed the words, “I have cancer”) — I was so surprised by medical news not delivering the usual “normal” results that I slipped, boom, into a metaphoric pit: a pit full of vicious black dogs nipping at my heels as (in my operatic imagination) a hot-air balloon struggled, way too slowly, to lift me up, up, and away from peril.
Thanks to a visceral response — in managing serious disease, the visceral plays as vital a role as your own conscious effort — I knew in that moment I could not survive if, in my mind’s eye, I was constantly attacked by vicious dogs. I had to declare such image forbidden, draw an “X” through it, jam it. Which I did: Harking to the closing image of the “Dragnet” TV series from the ’60s, when each case was literally hammered closed, I hammered closed this terrifying image; now I can describe it, but it’s toothless, noiseless, benign. When my husband insisted, “You are going to be alright,” rather than note he is many things but not a doctor, instead I said: “You’re right.” And when one of my brothers said, “Oh Sis, I fear for you,” my response was instant: “Fear not, dammit! I will beat this thing!” I held off telling my mother, because we were soon to host a milestone birthday for her. I told her after, emphasizing again, this time without the profanity (not with Mom): “Fear not, Mom, I will beat this thing.” By then I was getting the hang of how to deal, how to use the visceral to my advantage, fashion my mantras. I would not rely on hot-air balloons for lift, for rescue.
Since then I have had two major surgeries — the first, in 2005, to remove the thyroid; the second because of the cancer’s recurrence, a 6-hour ordeal to remove “about a billion cancer cells” from the lymph nodes. (It was hoped, in the interim, that two rounds of imbibing radioactive iodine and an overnight in the hospital isolation unit would render me “clean” of cancer, but, no.) And just last week, I “walked away from another one”: A cancerous nodule on my throat, probably “splashed” there during the marathon 2010 surgery, was surgically removed. I told friends it would be minor surgery, but we knew it would be major if cancerous cells from the nodule “splashed” into the bloodstream during removal. First thing the nurse said to me as I came to was: “Your surgery was only ten minutes. That’s a good sign, hon” — a sign the cancer had been contained, again. “Oh whew!” I managed to squeeze out. “Whew” indeed! I write now from that “Whew.”
Let me count the ways, then, in which I have learned to use the cancer — to live fuller than I ever expected, to navigate, rather than be buffeted by, the white-water rapids of living with serious disease. I cast these insights as opportunities — things you get to do, you get to acquire, by going on the offensive, rather than describe defensive measures or coping mechanisms. I am talking about getting a new lens on Life. This may strike some as straight from La-La Land or whistling past the graveyard. But: Life is largely a matter of managing yourself, both in the everyday as well as in crises. Here is how I manage myself, living with cancer.
First, the operational advantages: You get to prioritize! If you had problems prioritizing before, you don’t now, not with your reduced energy level, which you will come to husband assiduously. Meaning: You get to say No and Yes to things — to professional projects, to social commitments, even to people (“high-maintenance” types will recede from view, you will tend only toward those “all grown up,” the more mature and responsible). Your No will be final (you will have no trouble begging off), your Yes will be conditional (“Here’s what I can do”). And another bonus: You get not to procrastinate anymore! Procrastination, “Time’s thief,” thieves no more. You get to get on with things— now. When I tell my doctors that, to the best of my ability, I use the cancer, these are the things I cite.
But these are just organizing principles to managing serious illness. They are but the foothills to the perspective you ultimately get to achieve (and here I am prioritizing). The Parnassian heights include:
You get to know, and rely on, your Will to Life, your “life-spark.” Talking with my brother at length for the first time post-surgery, he said how he admired my courage. I assured him he, too, had it — courage: “Depend on it, Dear Brother. It’s visceral: Your body will step up and go to work for you like gangbusters.” We spoke of our father, a medical doctor: Of the life-spark, Dad said either you had it, in which case you helped yourself, or you didn’t, in which case he couldn’t help. In combination, the visceral — your body’s Will to Life — and the conscious — your renewed commitment to it— can produce an abundance of courage, even a super-abundance, tipping into bravado. But better bravado than quaking. You can modulate.
Recommitted as you are to Life, you get to discern, and affirm, that which is life-loving in the culture. Equally important, you get to discern, and turn aside, that which is death-loving — the pathological, the dystopian, the silly “breaking bad” trope. You become allergic to the malignant, the false and fallacious. At a time when the West, and America itself, is said to be in decline, this capacity to discern the mindsets preventing us from reversing our decline is key. The death-wish of modernist writer Franz Kafka ran through all his work and life; too late, as he lay dying, he discovered his life-spark; yet Kafka is deemed great, he still holds sway over Western culture. The New Yorker’s Adam Kirsch cites modernist poet T.S. Eliot’s putdown of Goethe: “There is something artificial and even priggish about Goethe’s healthiness.” As Kirsch sums it: “For the modernists, being spiritually sick was a condition of intellectual respectability.” Motoring with reinforced life-spark, you get to say: Are you freaking kidding me? Same for masochists and their stunt-memoirs, singing paeans to their self-induced pain.
You get to reside in the Land of Reality. Suddenly, the illusory and make-believe no longer appeal. Tethered anew to Life, you become fascinated with Reality — how and why things are and work. Not that I would get scientific about it, but now I deal with Life and the world as it is, from the smallest thing (like surgical tables are now narrower, so the surgeon doesn’t have to lean so far over the patient) to the broadest (like the historical forces at work, see again: decline). As for national decline, my response (as a commentator) is reality-based: Basically, we need to save American Democracy. And when Reality turns perilous, as with the COVID-19 pandemic, you instantly “get” the concept of contagion, because living with cancer, you understand your body is a site of contagion. Knowing what COVID does to lungs — and mindful that the cancer entered my lungs five years ago (still as thyroid cancer, not lung cancer) — I mind the COVID protocols religiously. And I pity those who defy them, sickened by ideology (talk about serious illness).
You get to know the role of stress in health. This knowledge is literally a life-saver. My doctor-father urged his patients to “Mind the stress.” Would that I had myself: I may have set myself up for my own cancer by, at one point, allowing stress to seize my life, uncontrolled (various of my doctors agree this may be the case).
In 2004 when America descended to engaging in torture, in Iraq at Abu Ghraib prison, I was overwhelmed with moral shame for America. I was in such anguish I visualized my nervous grid aflame, in an out-of-control, four-alarm fire. Thus when I got the diagnosis of cancer a year later, I was not truly surprised (it was the lack of preamble that shocked, not the verdict). While I pride myself for caring about the right things, I know now: I need not have sacrificed myself and my health — my very life — on the pyre. On this I have made major — epic — reform: Now I visualize my nervous grid as a heaping treasure-chest, with my Guardian Angel standing over it, wielding her sword-arm against any and all malevolent forces. Just about nothing pierces that perimeter — not even a malevolent force like Donald Trump. Yes, I revile Trump for the damage he has inflicted on American Democracy, but he gets nowhere near my nervous grid: He is for me a mere mental construct, outside and away from me where, as a commentator, I can see him better, like a fly buzzing in midair. Just as anger is the wolf that eats you from inside, so does stress: Throw it off, just as far as you can, appoint a Guardian Angel, and save your life. And if anyone mocks the idea of a Guardian Angel: Class, you know what to say, you know how to defend.
You get to understand the pulsing of Time. More than before, when I saw Life’s time-line as infinite, now living with cancer I know it is not. But this new understanding of Time as finite is all to the good (see above: re Reality). This sanguinity of course depends on how contained your disease is. I realize these principles about using one’s disease may not apply to those whose disease is terminal; or perhaps they do? (Apart from disease, I’d offer these insights to manage many a hardship.) I count myself exceedingly fortunate that, as my expert doctors at Seattle Cancer Care Alliance assure me, even though I am, yes, living with cancer, mine is so slow-moving that I will not die of it, not unless it metastasizes under stress (which again, I don’t do anymore). I take that assurance as my “tent-pole” belief. Though there is never a day when I am not reminded I have cancer, I say to myself: O.K., these are the confines of your life, you can work with it, keep writing, keep going, fill in the confines as gloriously as you can. This is why I have never considered retirement: Not only would I sideline myself from the battle to save America, but I might think too much on the cancer — and for that, there is no Time. I feel the pulsing of Time in my very own pulse. That might sound more morbid than poetic, but, being so altered, not to me.
You get to revel in Beauty. Speaking of poetic, in living with serious illness you become exquisitely sensitive to Beauty — all forms of, whether a line of poetry, a passage of music, a great performance of acting or singing. Like yesterday, I heard on the radio Erik Satie’s Gnossiennes and, boom, tears in my eyes (and I vowed to get back to the piano). To pull me out of my anesthetic grog, I watched Casablanca, my all-time favorite, lying in wait for the famous lines, joyously repeating them. And always but always, I recur to Virgil’s lines about striving for “the upper air.” Again, not all Art passes muster: You with your acquaintance with Death will “get it” instantly, the distinction between death-loving and life-affirming. And it’s not just Art conveying Beauty; the everyday does, too. The day after this last surgery (as I wrote to family and friends), the leaves of our Japanese maple turning bright red in our backyard struck me as “heartbreakingly beautiful.”
You get to connect more deeply with Humanity. As noted earlier, much in modern life tends to degrade rather than elevate. Humanity now is too often defined downward, toward pathology and dysfunction. Now, with so much bad behavior on display — the violence at the U.S. Capitol on Jan. 6, the death threats accompanying Trump’s “Stop the Steal” campaign, the punching-out of airline personnel by nasty passengers defying COVID protocols — it is hard to relate to these fellow human beings as, well, human. But in living with serious illness, when you are reduced to your own humanity at its most basic and visceral, you see that we are all pilgrims on the Road of Life and Death, trekking best we can through the Valley of the Shadow of Death. I’m not saying this exonerates the miscreants-verging-on-criminal, but this view gives you a handle in dealing with them, pushing back, maybe even pointing the way upward.
You get to be Philosophic. With serious illness taking you to territory far beyond your previous life, now more shadowed in chiaroscuro than sunlit, your scope of vision and understanding is broader, deeper, richer. Now you get the Big Idea behind the thing, the event. You can rise above the moiling immediate to get an overview, see in full. You look at people and, instantly, you can read Character. “At the end of the day” now really signifies, giving life to a phrase that, before, was cliché; now you fill it in with wisdom. In this you have gotten philosophic, wise: dealing in ideas, meaning, The Ultimate. Everywhere you look, you see Metaphor: Valley of the Shadow of Death, Guardian Angel, tent-pole. Me, I am moved to capitalize these Big Ideas (so make that: Tent-Pole). In these low times, I realize I sound high-minded, but, truly, I exult in it: being high-minded. Besides, in my struggle with Death, aiming for “the upper air,” why would I fritter my precious, precious life with the base and low? Which touches on my signal philosophic trait: making the moral point. I made it before the cancer and, most certainly, I make it now. Now, with America so troubled and lost, which I diagnose in big part as lost moral compass, I aim to sound that particular note. All this is not to say, of course, that the un-diseased cannot achieve the same philosophic heights, and do, but I do find more wisdom among those living with serious disease.
And, lastly, you get to live in Love. The poets and songwriters are right: It really is all about love. And if we are lucky, we find our true love — make that: True Love — and secure it for a lifetime (sometimes it takes more than one try). And with serious illness, that love sustains, buoys; I would even ascribe healing power to it. My True Love, Larry, and I have always, in our 44-year marriage, been vocal in our love; I used to say every fifth sentence out of my husband’s mouth was “I love you.” Now, with this household living with cancer, because your partner of necessity also lives with it, our love has taken on new dimensions: It is not only our foundation and fuel, but our raison d’etre, our banner, our safe harbor, The Indestructible that the tragic Franz Kafka speculated is at the innermost core of human life. And this time around, in this household, I would say My Dear Husband is more wrung out than I; so now I must go tend mio compagno di vita. Where I have become more vocal is in expressing love for family and friends — Dear Brother, Dear Friend, Dear Old Friend. My cup runneth over.
My time also runneth out here; so, enough. I submit these insights as my “best stuff,” as a longish document, in lieu of a book; I won’t become a professional cancerist. Some final odds and ends: In talking about the cancer, I use the definite article, “the,” not the personal pronoun, “my,” as a distancing device. I do not read up on cancer: Larry gave me Siddhartha Mukherjee’s great tome on cancer, The Emperor of All Maladies, for Christmas early in our trek; my instinct was to say, “Thanks, Dear, but I think not.” It is Larry who tracks the news in cancer research. And Larry always goes with me to the cancer appointments, to ensure we both hear what is being said about this life-and-death matter. Still, we both missed the reference to “pleural” development of the cancer, when it invaded the lungs. Larry figured it out later when he read the doctor’s report.
And this tidbit, from the aforementioned Goethe, who advised that, to live a long healthy life, nurse a malady very carefully every day to old age. (Strange: Googling to confirm the quote, I can’t find it, which makes me wonder: Did I make up this good advice? If so: Finders, keepers.) Goethe’s last words, famously, were “Mehr Licht!” (“More light!”). I can relate.
Though I have written all this with ease (and no doubt with the vestiges of anesthesia), I don’t mean to suggest anything about this life-and-death struggle is easy, because of course it is not. I have deep sympathy for anyone feeling themselves on the downside of living with serious illness. (And in my deepening connection with Humanity, I am moved by the many friends living in the Valley of the Shadow of Death.) But, with Time, and given your own life-spark, and given a decent prognosis, you can get fully into your performance. And, yes, it is a performance: It is a role, a heroic one as I interpret it, in a great Drama, one that I hope has five acts and ends, not in Tragedy, but with the world restored. Proof this is a performance came during the drive home hours after this last surgery: Larry tells me I was “Chatty Cathy” — in the extreme, all the way home (it’s an hour drive). Then, having hit the sack early, I got up three hours earlier than usual — and I was still “Chatty Cathy,” now invading his quiet time. Larry called our best friend, laughing: “OMG, Joe — helllp!” Finally, coming to myself, I told him: “Dear, it’s the relief talking.”
One last question: Would I be who I am today without the cancer? Having alluded to an “altered” self, what has altered, and how? I have never addressed this question before, but I will now: No, I do not think I would be the sturdy and clarified persona I am now without the cancer. Yes, I think it took this daily struggle with Death to give Life its full and proper value, to force me to use the cancer and, indeed, use Life to the fullest measure. Before the cancer, I was easily wounded by the world. Now, I still feel the wounds of the world, but I bind them up fast and focus, laser-like, on fixing the world, forwarding the ball down the field. I do not wallow, I do not stew, I do not spin my wheels, whereas before, I did. Upon diagnosis I did not spend any time asking, Why me, why did I get cancer? (Somehow I knew pursuing that question was a killer.) Of course, given a preference, I would prefer living without cancer; I tell my doctors at Seattle Cancer Care Alliance I am game for any experimental trial that would rid me of “the emperor of all maladies” (I got myself referred to SCCA specifically with that aim in mind). But, given the stroke of Fate — the cancer — may I say: For performance and grace under pressure, I admire the heck out of myself. I always wanted to be the Captain of My Unconquerable Soul — and, thanks to cancer, I get to be.
For my other post on the subject, “A Trek Through Cancer” (2010), see here.