Tag: survival

You have no “date with death.”

Do you know your statistical mortality? Do your best to forget it.

One day, science told me “You have until May 13, 2015, to live.”

I love science, trust science, studied it in college (chemistry), wrote about it for a living, and read it for leisure. It returned my devotion with that terrifying pronouncement.

Specifically, it was the science of statistics and probabilities that pronounced my mortality. My diagnosis was acute myelogenous leukemia. My prognosis (if chemo failed) was six months, or less.

But my reaction to statistical probabilities, then as now, is to stick two fingers in my ears and say “brblbrblbrblbrblbrbl,” until statistical probabilities stop talking.

Of course, I believe in statistical probabilities, just as I believe in pharmacology, which has helped me to survive AML for three years—uncured, but fairly vigorously. But in the applied science of medicine, there is enormous uncertainty; individual results vary broadly. The same chemotherapy knocks out one person’s cancer like it was jock itch, but fails the next guy. Statistics quantify the results on a bell curve, with a median mortality. That is the figure a doctor quotes when saying “you have six months, give or take.”

The reason they say “give or take” is because mortality statistics are both less than six months, or greater than six months. Possibly, far greater than six months.

A man who embraced statistical probabilities was the scientist Stephen Jay Gould. He was the Harvard evolutionary biologist and paleontologist who wrote such delightful, accessible books as The Panda’s Thumb and Hen’s Teeth and Horses’ Toes, both on my bookshelves. He was a people’s scientist, who even made a 1997 appearance on The Simpsons.

Mortality statistics go both ways; they are both less than six months, or greater than six months. Sometimes, far greater than six months.

Once diagnosed with peritoneal mesothelioma in 1982, he did what scientists do; he boned up on the research. He went to Harvard’s Countway medical library, to discover that the median survival for his incurable diagnosis was just eight short months.

He described sitting stunned for fifteen minutes; then, smiling.

If eight months was the median, then fully 50 percent with his diagnosis survived longer than eight months, some for decades. He in effect declared, “That will be me,” and it was: he survived for 20 years, lecturing at Harvard, and writing 300 consecutive essays for Natural History magazine between 1974 and 2001, never missing a month. That includes July 1982, when he was diagnosed. His post-diagnosis life was lengthy and well-lived.

He wrote a clever, hopeful piece for Discover magazine entitled The Median Isn’t the Message, describing his experience, and educating the reader on how to read statistics.

Death is not an appointment

To Gould’s thinking, those who accepted the median mortality were doomed to fulfill it.

Recall the old tale “The Appointment in Samarra”?

A merchant in Baghdad sends his servant to the marketplace. The servant returns, terrified, because he saw Death there. The merchant lends his horse to the servant, tells him “Flee to Samarra,” then storms down to the marketplace to confront Death. There, Death replies “I was astonished to see him in Baghdad, for I had an appointment with him tonight in Samarra.” (That from a 1933 telling of the tale by W. Somerset Maugham.)

A fine tale, the moral of which is, death is inevitable. Of course it is. But it is not predictable to the day. If I had accepted median mortality stats, I’d have been counting down the days to May 13, 2015, and making no plans beyond then; thus, putting a curse upon my life.

Gould would not be so cursed. He lamented the average person’s lack of training in statistics, saying:

I suspect that most people…would read such a statement as “I will probably be dead in eight months”—the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much [italics mine].

So this scientist believed that mindset—“attitude”—affected your longevity. He went on to write:

Attitude clearly matters in fighting cancer…match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say [italics mine], tend to live longer.

What, I ask you, is more fuzzy-edged, irreproducible, and less empirically quantifiable than attitude? And yet this scientist believed in it, as surely as he believed in statistics.*

You can adapt your mindset—quickly—to survive

The only pessimistic note in Gould’s article is that “one can’t reconstruct oneself at short notice and for a definite purpose.” He was referring to the temperament needed to survive cancer, believing you must have the right temperament in place before you are even diagnosed.

Respectfully—yes, we can adapt our mindsets, ASAP, when the stakes are life and death.

Witness the example of Viktor E. Frankl, who famously wrote:

Everything can be taken from a man but one thing: the last of human freedoms—the ability to choose one’s attitude in a given set of circumstances.

Frankl’s circumstances were those of an Austrian Jew imprisoned in three concentration camps, being Auschwitz, Kaufering and Türkheim. From that horrific experience was born his psychotherapeutic method, called logotherapy; to identify a purpose in life to feel positively about, then immersively imagine that outcome, until it becomes real.

Like surviving Auschwitz; like surviving cancer.

FranklSearchForMeaning
Viktor Frankl sought growth and meaning in the worst imaginable circumstance.

What those two circumstances have in common it is that they are sudden, horrific circumstances, visited upon ordinary people without preparation or a skills-set to meet them. I have no idea about Frankl’s temperament before his imprisonment. But his observation that “When we are no longer able to change a situation—we are challenged to change ourselves,” suggests that he adapted, radically and quickly.

He detailed his experience and theories in the book Man’s Search for Meaning, originally entitled …To Nevertheless Say ‘Yes’ to Life. He concluded that the average prisoner’s experience was based not solely upon experience, but also upon freedom of choice he exerts, even under severe suffering. He wrote:

Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.

Thus—to hope, in defiance of circumstance; and to choose a mindset, rather than have one (like victimhood) foist upon us.

Think you have an appointment with death? Break it.

Let no one convince you that hope is delusional, or anti-intellectual.

If you have learned and accepted your median mortality, then do your best to forget it. I’d have remained willfully ignorant of my own, if some tact-impaired smartphone scholar (you know the type) hadn’t Googled it and blurted it out. Still, I couldn’t un-hear that number, and as of this morning, I have survived the median mortality six times over ([3 years X 12 months]/6 months).

A quote I love is from the “Catholic Prayer to the Divine Physician”:

Destroy all the word curses that have been spoken against my health…I break every agreement that I have made with my sickness and disease.

That includes any “appointment with death” you have made. Looking back on my calendar at May 13, 2015, I skipped my appointment with The Pale Rider. Instead I turned in two articles to a client, then brushed the dog’s teeth. His breath was getting funky.

CountingUpTheDays_small
I don’t find it useful wondering how many days I have left; rather, I count the days I’ve survived already, taking them as God’s promise that He means me to stay put.

I have never counted how many days I (statistically speaking) had left. Instead I count the days I’ve survived since diagnosis, with tick marks in my journal; 1,096, as of this morning (3 years * 365 days + 1 Leap Year day). I expect many more days, months, years, because there are so many behind me; each day is a promise, God telling me “My will is that you remain where you are.”

Gould outlived his projected mortality by a factor of 30 ([20 years * 12 months]/8 months). When he succumbed in 2002, it was to a cancer unrelated to his mesothelioma. Frankl passed in 1997. Between them, we have two scientists who set store in hope—immeasurable, unquantifiable, unscientific hope. So, let no one convince you that hope is delusional, or anti-intellectual. It was good enough for these two smart guys.

Godspeed.

—

* I covered pretty much the same list in my first entry, 1000 days of thriving with cancer. Here’s how. I was flattered to read Gould’s article months later to find much the same observations. You will find largely the same factors of survival at The Radical Remission Project.

Chicken Macabre: Or, my Deliverance from Terror & Despair

A tale of hospitalization, confinement, and two fearsome demons.

I had borne with decreasing humor the thousand and one gaffes of the hospital’s kitchen staff.

Lest you, reader, surmise that I had somehow raised their ire, know that the first such buffoonery was on the first night of a six-week confinement at B______ Hospital. It was then that I was provided with three drinking straws, but no drink. On the second night, I was granted a knife and spoon; this for meatloaf. On the third night, I was bestowed no dining implements whatsoever.

Each breakfast, lunch, and dinner presented the kitchen staff with a new “incompetunity,” if you will. Two pats of butter accompanied a dinner roll that had, by some sleight of hand, vanished. The chicken salad sandwich that I requested transmogrified, in transport, into egg salad. Tomato soup had miraculously transubstantiated into potato bisque—accompanied by a fork with which to eat it.

Had the meals appetized, I would perhaps have borne these ineptitudes with grace. Surely, even a hospital cook has some pride of workmanship? Not so. The “pizza” was a sodden affair of French bread used to sponge up catsup and a cheese-like substance. The “meatballs” atop my spaghetti were each a spitball of breadcrumbs and bouillon, without the suspicion of ground beef.

The broccoli side dish was a particularly sad little offering, which called to mind a baby bird I had witnessed to be pushed from its nest on scorching hot day. This broccoli stalk, lacking a floret, was as naked, limp, and hopeless as that fledgling. I felt as spurned as the bird was by its mother. But alas, no giant presented himself to clap a hand over his eyes, grit his teeth, and end my wretchedness under the heel of a boot. (I was, after all, confined to an institution dedicated to the preservation of life.)

A sympathetic sister of the hospital advised me that frozen dinners were available—not from the menu, but upon request. O! Do not curl your lip at Salisbury steak in a celluloid tray, before you know the sting of desperation. I ordered that meal, and its blandness was exquisite. Heated as the meal was in a rotating and radioactive oven, the brownie was reduced to a tiny brick, which had shrunk from the sides of its compartment. But a mélange of the mashed potatoes and corn niblets, with three pats of butter, was at least inoffensive.

And so I surrendered any true enjoyment of breakfast, lunch and dinner. These I traded for the comfort of a full stomach and counted myself fortunate, as others with my affliction must surrender entirely to nausea, and nourish themselves via an infusion of sugar water in their veins. My appetite was always mightier than my slim stature, and was mightier than leukemia itself. Besides which, I simply could not lay down my head without having eaten something. How much appeasement to the invading force of blood cancer could I bear?

Thus, I surrendered to a repetitive menu, knowing that I would have flavor again, some weeks ahead. Meanwhile, I must beg for eating implements, butter, and drinks from the good sisters. And the dinners’ frozen state introduced a wholly new incompetunity, to whit:

Inmate: (Realizes the dinner tray is frozen.) I beg your pardon—this isn’t cooked.

Kitchen Staff: (Minces and curtsies, speaks with an indeterminate accent.) I thowwy! (Turns to leave.)

Inmate: Where are you going? How can I eat this?

Kitchen Staff: (Smiles broadly, curtsies again.) I thowwy! (Opens door to leave.)

Inmate: You “thowwy”? That’s not good enough! Please…

(Exit Kitchen Staff, smiling and mincing.)

I had not been served by this creature before, but she had left me furious. The usually-young people who brought me my trays were ordinarily a civil and respectful lot. They entered quietly, lay down their conveyances, and exited before I had a chance to discover the day’s missing items or unwelcome substitutions. They knew not what they did. But she of the curtsy, who smiled more broadly and lisped more childishly as my upset grew—her kind gave Our Lord vinegar when he thirsted for water.

Those were ten days of cyclical blandness, alternating between the Salisbury steak and the boneless fried chicken, broken here and there by an uninspired but inoffensive hamburger. The young men and women in their black-and-blue uniforms conveyed them to me with murmured politeness. They were too numerous, their visits too brief, to know them by name or even mark their faces. All but for one.

She of the curtsies and broad grin arrived and set before me my tray. Had I imagined a guileful flash in her eyes? She backed out of the room rather than simply exiting, telling me “Good evening, Thir! Here you are, Thir! Will there be anything elth, Thir? Enjoy!”, thus leaving me alone with the tray.

I lifted the green dome that covered the dish to find bone-in fried chicken, rather than boneless; a breast, accompanied by mashed potato and corn niblets and a brownie brick. But this was not the moist, steaming breast of a plump and pampered chicken.

Imagine, if you will, a chicken that had been tossed off some chuck wagon as being too scrawny to justify its feed. Imagine this abandonment had happened in the Nevada desert. The hapless fowl might peck for a day, two at the most, finding nothing in the dust for succor. In time, finding neither water nor worm, the poor beast would fall forth upon its scrawny breast, and there pant away its life. Somehow, a Mr. Swanson happened along with his wagon, and rather than waste the corpse, saved it for his processing plant, and that chicken found its way to my Boston bedside.

The aforementioned boneless fried chicken was manufactured into an oblong ingot, tapered slightly at an end. The meat was fairly tender, the breading soft and golden, owed largely to food coloring, I am certain. It resembled a live bird in no way, and the idea that it had once lived was a comfortable, distant abstraction.

But this breast had the form of chicken indeed; one that had lived a hard life, and died a miserable, solitary death.

Appalled, my appetite destroyed, I did not bother even with the mashed potatoes and niblets. I pushed away the tray table, and rolled over to sleep.

Now, it is not my custom to doze after dinner. But when one is bedridden, one learns like a dog to sleep at all hours of the day, for lack of other amusement. Yet, sleep eluded me.

I rolled onto a side, facing a wall, attempting to clear my mind of—?

Despair. And terror. I would never leave this room; of that I was suddenly certain.

I prayed—called upon God the Healer and Jesus, the Divine Physician. I had borne my illness remarkably, so my healers told me. I had simply refused to entertain death and refused to go in so bland and commonplace a way as to succumb to a blood disorder.

Chicken Macabre 1And, of a sudden, Satan’s twin imps of Despair and Terror had found their way.

I called for a nurse, who, seeing my state, brought me a sublingual tranquilizer, one which should calm me in seconds. She seemed truly distressed; what had gripped the stalwart fellow in Cell 7B? “Lorazepam never fails,” she soothed before leaving. But alas, the ministrations of man were no match for the worst of Satan’s brat children.

I at last threw off the bed covers and sat up, determined to grab hold of and strangle the beasts, each in a hand. How? How after so many weeks had they found their way!

My eye fell upon the dinner cart, and the answer was clear. They had crawled under a pale-green dome and onto a pale-green plate, and been delivered to me by a grinning grotesque who, if I accused her of such calumny, would undoubtedly curtsy and declare “I thowwy!”

I pushed the rolling dinner cart to the furthest corner of my cell, but eight feet away, and lay down again, my face turned from it. The chicken couldn’t get me from there. But a freed imp is like a bat in your parlor. It finds the far corners and terrifies you from there, and eludes you upon your every approach.

I pushed the dinner cart out of the room entirely—a superfluous gesture, for the imps had escaped their green dome. And, switching cells would do no good, for while Terror had distracted me, Despair and flown into an ear and lodged itself in my psyche. While I batted that side of my head, Terror had stuffed itself into the opposite ear.

The twins danced merrily, unreachably, in my skull. They thundered about like brats in an attic who had pulled up the ladder behind them. But rather than empty the trunks of Granddad’s Army helmet and medals and mockingly parading about in them; rather than don Grandma’s wedding dress and destroy it by trailing it through inches of dust; the imps found trunks of horrific visions, and screaming with delight, tossed them out one by one like so many doilies and handkerchiefs.

A vision of my corpse, bald and bloated by 50 lbs, in a double-wide casket.

A vision of my parents standing graveside, my father wearing the 80-year-old face that I was destined to have, but never reached. Whatever grief I had caused them in a youth, this was the ultimate grief.

A vision of my darling Sadie Mae, alone and in widow’s weeds, in a silent parlor where for countless evenings I had stroked her feet in my lap while music or some entertainment played.

“Not that one!” I cried. But that only encouraged the imps, and I was treated to a vision of Sadie Mae walking our greyhound, ‘Teo, in the mornings (customarily my duty), with his eloquent brown eyes belying his simple thoughts, to whit: “Little One, where did the Big One go? What will I do without him? He was a soft touch when I wanted a biscuit! Please tell me he’s coming back.”

“They will run out of steam in good time,” I reasoned, and simply lay still, determined to wait them out. But no, Terror and Despair are supernatural beings that gain strength from their own mischief.

“I must sleep eventually, through sheer exhaustion,” I thought. But imagine a maelstrom at sea, in which your bunk sways and pitches wildly, and you are uncertain but that the ship will founder. A maelstrom betwixt the ears is just so, overcoming all weariness.

“Logic!” I cried. Terror and Despair are ground easily under the iron wheels of cool, immovable logic! True so far as it goes; but if we were to trust if/then statements, and statistics regarding my diagnosis, well, logic had it that I should have perished already. Terror and Despair tittered gleefully at my failure.

What remedy was left me?

Like many a soldier, through time, I attempted to pray, to whit:

“Yea, though I walk through the Valley of the Shadow of Death, I will fear no evil; what’s the rest of it? The Lord Is my shepherd, I shall not want…”

Decades of indifference and spiritual neglect worked against me. I imagined Jehovah being startled out of his heavenly rest at 4 o’clock to say “Look who comes knocking! Gabriel, arise! This will amuse you!”

Such was the scolding, loveless Jehovah I imagined.

But perhaps he was the Jehovah of the parables, who welcomed the prodigal son with a fatted calf. Who wept and embraced and kissed the top of a head and said “Stop telling me your sins, I care not. I have awaited you so long. Come, everyone! Look who is here!”

A pastor had stopped by my cell some days before, and left with me a cheaply-bound New Testament, with miniscule type and Jesus’ words in a barely readable pink. In its last pages I found the Concordance, and in the Concordance, “Fear.” I had heard a good many of the scriptures. Psalm 23 (on which I had called imperfectly) bid:

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. (Ps. 23:4)

The Apostle Paul had written in Romans:

If God be for us, who can be against us? (Rom. 8:31)

Alas, as unpracticed as I was in faith, these old bullets flamed and misfired. I searched for newer ammunition, something I had never heard, which had not become an old chestnut. And there it was:

For God has not given us the spirit of fear; but of power, and of love, and of a sound mind. (2 Tim. 1:7)

This bullet, fired into the air, caught the twin imps’ attention. Rather than shriek and laugh in my skull, they snarled, for I was being a spoilsport.

Imps could wear out a man’s faith as surely as they wore out his body. But the Father of Imps himself had been conquered, had he not? Had not Christ himself showed us how, when Satan so mercilessly tempted him in the desert? “You are starving, turn stone to bread!” “All will believe you at last—just toss yourself from the temple roof and angels will catch you!” “I will give you dominion of the world, to shape as the paradise you wish—if you will but worship me.”

And so I called aloud, in my cell: “Get thee behind me, Satan, thou art an offense to me! For it is written that God did not give us a spirit of fear; He gave us a spirit of power, and of love, and of peace of mind.”

Silence. The imps had been slapped like fresh brats, and were startled.

A second time, a third time, a dozen times, I repeated my prayer. I shot holes in the visions with it, fired it relentlessly, which drowned out the imps. My ammunition was limitless, and I kept firing. A good sister entered to check my fluid drips from the bag atop the Cancer Christmas Tree, and I held out a palm for silence; I must not relent. Her duty done quickly, she exited in silence.

Perhaps it was forty-five minutes, or an hour, when at last I stopped to listen.

No shrieking. No snarling. Nay; the imps had gone.

I lay my head tentatively upon my pillow. For safety, I pulled a watch cap, a gift of Sadie Mae, over my bald head to cover my ears, lest another imp find ingress there. But instead, I passed the night in dreamless silence.

***

Perhaps I had invited Satan’s imps; goaded them; for I had already welcomed the imp of hubris.

“How can you bear the isolation?” friend J______ had inquired, some days before.

Proudly I declared, “I’m a writer, and a reader. I pity the mountaineer confined like this; but I can have pen and ink, and books, wherever I go.”

True, as far as it goes. But where a vivid imagination is a writer’s strength, it is the cancer-afflicted’s weakness. And so, I now answer that question, “I bore up tolerably well, with one terrifying exception. But I armed myself against it,” and wave The Word like a six gun.