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.

When chemo’s not enough, we must discipline ourselves to live.

Who’s your hero, from history, sports, entertainment? You need that kind of dedication.

“Better to be a warrior in a garden, than a gardener in a war,” goes a credo by which martial artists live.

We with The Big C are like gardeners thrown into war. Our challenge is like no other we have faced, as professionals, as parents even as athletes and soldiers. We need new skills, new tools, and a willingness to adapt, and we need them now.

Shin Terayama
Conventional medicine gave up on Shin Terayama, so he tossed his old life for that of a survivor-in-training. So far (33 years), so good.

The incredible Shin Terayama showed an absolute willingness to adapt. A Japanese physicist who had worked impossible hours for two decades (usually 18 hour days), in 1984 he found himself out of work and doomed by metastatic kidney cancer. But he lives to this day.

Shin shucked off his old life for a drastically new one. He was no longer a physicist, but a survivor in training. He developed a spiritual and dietary regimen that included (among other elements) a whole-food diet; chakra work; breathing exercises; and playing the cello he had long neglected for work. He arose at 4:30 every morning to begin his regimen, and within four years (he had been given three months, at best), he was cured.

Shin dedicated his life to his healing, which we must be prepared to do.

A champion’s discipline

Something all champions have in common, be that champion a recording artist, NFL player, New York Symphony cellist, prima ballerina, or survivor like Shin Terayama, is discipline. Enormous discipline.

The subject of discipline practically mandates inspirations from the military or professional sports. But those dedicated people are disciplined warriors, already.

A “gardener” who described her discipline eloquently is Associate US Supreme Court Justice Sonia Sotomayor, who at age seven was diagnosed with Type 1 diabetes. (She’s now 63.) She describes diabetes as a central part of her life that taught her discipline and moderation. “I’ve trained myself to be super-vigilant because I feel better when I am in control,” she said, referring to all walks of life—including studying law at Yale.

Another example, one I witnessed personally, is that of Mick Jagger.

In late summer of 2005, I worked next door to a ballet studio in Boston’s South End. One afternoon, a limo pulled up to the studio. A lanky older guy got out, carrying a boombox stereo. The driver said something like, “I’ll be here when you’re ready, Mr. Jagger.”

For three tireless hours, Jagger strutted from one corner of the studio to the other, singing aloud to “Start Me Up” and “It’s Only Rock ‘n Roll.” He was 62 at the time. But The Stones were playing Fenway Park the next night, and he was going to give his fans the full Mick. That’s discipline.

Why do we need discipline? Isn’t treatment enough?

Some of us Big C folk need not change a thing, other than to let our healers work their wizardry. But alas, some cancers carry a grimmer prognosis. Leukemia carries a far lesser chance of survival than prostate cancer, and acute myeloid leukemia (AML—my brand), carries even less.

Still, I see it as the difference between trying out for the high school basketball team, or aiming for the NCAA. There are few contenders for the high school team, tens of thousands for a college slot. So, I’d better train hard.

Survival is a form of training. When even the most brilliant treatment offers little hope, we need well-crafted survival regimens, and the discipline to stick with them.

Calendar CaptureMy own daily regimen is pictured at right. I don’t complain about it, or cheat on it; I trust in it. Note that I include three broad categories, being 1) Spiritual, 2) Diet, and 3) Exercise. I talk about the need for all three in There’s no one cancer cure. There are dozens. But choose wisely. To recap, these integrated therapies augment traditional cancer treatment with those other, powerful elements.

Please do not screech at me about exercise. Of course, brutal chemo/radiation courses may preclude physical activity. But we must defy the muscle atrophy and learned helplessness of long bedrest, as best as we are able. I went through weeks when exercise was impossible; but when it became possible, I was on a mini stairstepper (small enough for my hospital room) for five minutes, 10 minutes, 20 minutes as I could manage, and working my muscles with resistance bands.

Apostle Paul
St. Paul lived like a leukemic, under a ceaseless threat of death (e.g., as a prisoner of the flaky Emperor Nero). So, he worked harder, and wrote faster.

And please do not scold “You judgmental jackass, I’d dearly love to dedicate my life to being a survivor, but I’m a teacher/parent/business owner, first.” You must be a survivor, first. I’m a freelance journalist who works as many hours as I can get. But, work can wait five minutes while I quaff a life-giving, gruesome-tasting beet/carrot/ginger/garlic smoothie, or for 10 minutes while I pray.

Discipline means consistency

Something NFL coach Vince Lombardi said is that “Practice does not make perfect. Only perfect practice makes perfect.”

Football practice is consistent and grueling, spent hammering away at your weaknesses. So is any worthwhile practice. At some point, cellist Yo Yo Ma quit replaying “Twinkle, Twinkle, Little Star,” and attacked the infinitely more difficult Chopin Cello Sonata in G minor, Op. 65.

My pal Bill is a Master 5 Middle/Heavyweight Pan-American Champion in Brazilian Jiu Jitsu. He achieved that in between fatherhood, caring for elderly parents, and a career as a pharmaceutical CEO—each by itself an excuse to avoid practice. But he doesn’t.

chemo legs-mercury
Bloated by 50 lbs of fluid with a poison-sumac-like rash, the last thing I felt like doing was work off the weight on a stairstepper. But as my pal Bill, a Jiu-Jitsu-champ says, “You feel ill? You train.”

He says of consistency in his training, “If you had a bad day, you train. Feel tired? You train. Illness, or a heavy work schedule? You have the mindset that you have a schedule, and you make the time.” Not even global travel for work interrupted his training. He would travel to Tokyo and hold meetings in the morning, then spend nights training at a dojo. (Similarly, Jagger finds a gym in every city that The Stones tour.)

St.  Paul likened achieving eternal life—the ultimate survival—to athletic discipline:

Don’t you realize that in a race everyone runs, but only one person gets the prize? So run to win! All athletes are disciplined in their training. They do it to win a prize that will fade away, but we do it for an eternal prize. So I run with purpose in every step. I am not just shadowboxing. I discipline my body like an athlete, training it to do what it should. (1 Cor. 24-27, NLT.)

Don’t surrender stuff; offer it up, gladly, in exchange for life

Recall that Sonia Sotomayor was diagnosed with Type 1 diabetes at age seven, so undoubtedly remembers what birthday cake tastes like. She might really enjoy a corner piece with all the frosting on her 64th birthday, instead of a bran muffin with a candle in it. (I’m guessing.)

Discipline is focusing with vigor upon what you stand to gain, not mourning what you give up.

But discipline is focusing with vigor upon what you stand to gain, not mourning what you give up. Singer/actress Julie Andrews said, “Some people regard discipline as a chore. For me, it is a kind of order that sets me free to fly.” She achieved what she has through thousands of hours of practice, which she in no way resents.

An MIT admissions officer I once interviewed said of the students, “There’s something different about these kids. They know from childhood they want to come here and nothing stops them, not even poverty.” And nothing gets in the way of their study. I lived near MIT, and on any Friday night, Saturday night or Halloween, its libraries were full and the labs lit up. No physicist ever won the Nobel Prize by thinking, “But it’s Cinco de Mayo! I wanna get hammerhead drunk and screw like a mink!”

After my diagnosis, survival became my MIT admission. I shucked off any threat to it, and took up any dietary/spiritual/physical practice I thought offered hope.

If I put all that into mournful “But I want it!” or “But I don’t wanna!” statements, it might read:

  • “But I liked smoking hand-rolled cigarettes with rough Russian tobacco!”
  • “But I miss Grey Goose martinis with onion!”
  • “But I love eating steak tips and ‘taters in pubs, and washing it down with two pints of Stella Artois!”
  • “But I don’t wanna wait for movies to come to Netflix, I wanna see James Bond flicks on the big screen in a germy theatre!”
  • “But I don’t wanna get up at 5 AM and pray or write in my journal or meditate, I wanna sleep till 7.”
  • “But I hate beets, I don’t care about their cytotoxic and anti-inflammatory properties, they taste poopy!”

I could boo-hoo like this all day. But I don’t. Most of those things are just indulgences (which may have contributed to my AML). If the price of another decade with Sadie Mae is trading beef tips for beet juice, so be it. (Although, I do eat beef tips and fisherman’s platters, washed down with beer. Perhaps once every four months.)

“This one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before.” (Phil. 3:13, KJV.

Of course, we Big C folk surrender far more than indulgences. We may leave behind the ability to work full time; financial comfort, for years to come; our hair, our energy, our body parts; any certainty of a future. We are robbed of simple joys of family life. Sara and I won’t enjoy a 10th anniversary getaway in October, because even luxury hotel rooms are all skeevy and forensic, as ABC, NBC and CBS remind us yearly in tedious exposés.

So, thanks to AML, much is behind me. Some things I offered up, but I was robbed of others.

In either case, a scripture that I love, also from St. Paul, reads:

“This one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before.” (Phil. 3:13, KJV.)

So, the health habits of a ‘40s tough-guy actor are behind me, and survival is before—if I reach forth unto it. Even then, there’s little chance I’ll make the team. But that chance is infinitely greater if I train hard.

Godspeed.

There’s no one cancer cure. There are dozens. But choose wisely.

Think “integrative therapies” that start with chemo.

If medical science hasn’t found the cure for cancer, neither can we.

And yet, we try. There must be something out there, something miraculous, proven, perhaps ancient and overlooked.

Alternative cures run from the essential to the dubious to the absurd. C’mon—coffee enemas? If squirting cold espresso up my bodunkus four times a day is the cure, then I surrender.

When I was diagnosed with AML leukemia, my beloved Sadie Mae was naturally desperate to find a definitive cure for me—a nonconventional one, to supplement chemotherapy. She researched ceaselessly, and found several. I considered them all, seriously, and two (which I’ll describe below) have saved me.

Among those I rejected was a $4,500 “Rife Machine” that uses harmonic vibration to kill cancer cells. It works—in a Petri dish (remember those from high school biology lab?)—but has never worked, credibly, in a person.

We tried cannabis oil, because “Cannabis Kills Cancer!”, its proponents enthuse. We abandoned it after a few months with no change in my blood counts, but a plummet in my energy and motivation and a perpetual, fuzzy-edged “stoner bliss.” The final straw was the morning I spent laughing at the whimsical shape of dog biscuits, while I missed a work deadline.

First thing’s first: Conventional medicine. It’s proven.

I will take the proven cure with a 10% chance over a dubious one claiming 100%.

After being diagnosed with pancreatic cancer—the one very treatable form of it—Apple’s Steve Jobs famously delayed medical intervention for nine months in favor of alternative treatments. Only when he continued to deteriorate did he seek medical intervention. “Jobs’s faith in alternative medicine likely cost him his life…He essentially committed suicide,” said the chief of Memorial Sloan Kettering Cancer Center’s integrative medicine department.

An aggressive cancer is like HIV: you have no time to futz around with the unproven.

Jobs appeared to distrust the bugbear “Western Medicine,” supposedly pirated by its evil twin Big Pharma, who don’t want you to know about the healing power of cannabis, coffee enemas, Rife machines, ad nauseum. Why not? Because Big Pharma can’t patent or profit from those. Besides, Western Medicine doesn’t want to cure you; it wants a lifelong dependent with health insurance.

Nonsense. Western Medicine saved my mother, my mother-in-law, Lance Armstrong, Melissa Etheridge, Robin Roberts of “Good Morning America,” and millions more. It has cured hepatitis C—that was decades in coming, but Western Medicine persisted. It enables HIV patients to live normally, versus the practically 100% fatality of the 1980s.

An aggressive cancer is like HIV: you have no time to futz around with the unproven.

Yeah, but you’re not cured!

Not yet.

Still, my healers at Dana Farber Cancer Institute succeed wonderfully.

Never once have they discussed with Sadie Mae and me “running out of options” or “turning our attention now to the quality of your (brief) life.” Instead, they finesse my treatment like chess masters, to stabilize and sustain me, while they diligently search for a promising trial. True, four such trials have come to naught; but people strike gold on their sixth, seventh, eighth trials. With their intervention, I live with acute leukemia as if it were the far-more-survivable chronic form.

Plus, my healers succeed with others, and I meet those survivors every week, while awaiting blood draws or infusions. My favorite was the Italian grandmother, cured for months, who on Christmas Eve Day was in for a routine blood check. She demanded “How long dis gonna take? I gotta get de Hell oudda heah.” It wouldn’t be a Buon Natale for her giant family without her frutti di mare feast.

My turn will come.

Think integrative, not alternative treatments.

Living within an hour’s drive of Dana Farber, I’d be a fool to smirk at it.

Still, as an aphorism goes, “Trust in Allah, but tie up your camel.” Trust in medicine; but don’t expect it to succeed on its own.

“Trust in Allah, but tie up your camel.”

The practice of integrative medicine combines conventional treatment with diet, exercise, herbal treatments, meditation, what have you. It ain’t quackery: The Osher Center for Integrative Medicine is a collaboration between Harvard Medical School and Brigham and Women’s Hospital (partnered with Dana Farber). It’s worth noting that Steve Jobs lived for eight years, post-diagnosis, with integrative treatments; but it appears he lost too much ground in those early months.

Two integrated therapies sustain me.

First is an anticancer diet. In her search for my salvation, Sadie Mae bought the book Anticancer: A New Way of Life (see sidebar of “Essential Knowledge”). It detailed how cancer spreads (metastasis); how it thrives; and how specific foods combat those mechanisms.

For example, garlic, green tea and turmeric are clinically, credibly proven to cause apoptosis, a sort-of suicide by cancer cells. Carrots inhibit cancer cell growth, as do beets. (Gross. Beets smell like freshly-turned grave dirt.)

The results? An anticancer, largely organic diet took 30 dumpy pounds off me and gave me energy when I should be losing it, and raised my neutrophils—healthy white blood cells—from being dangerously low (putting me at risk from death by a head cold) to near normal levels, in perhaps three weeks.

If diet proved the second most-powerful alternative treatment for me, faith is the first.

Serenity is, perhaps, the most powerful alternative treatment.

I count every day that I spend above ground as a miracle; and post-diagnosis, I’ve had 1,007 such miracles, as of this morning. My vigor is a miracle—with my red blood count, I should be riding a Hoveround with an oxygen tank in the basket.

God did all of that, and can cure me of AML as well.

(Here too, Sadie Mae guided me. For years, she told me of God’s promises, and one day I listened.)

Serenity is, perhaps, the most powerful alternative treatment.

Radical Remission Book
I cannot sing the praises of this book enough. It documents cases in which alternative treatments amplified medical intervention; or when medicine failed, while alternative therapies succeeded. Please, visit the Radical Remission Project; there you’ll find hope.

The book Radical Remission: Surviving Cancer Against All Odds (linked in the Essential Knowledge sidebar) tells wonderful stories of people who were “sent home to die,” but survived.

One commonality is serenity—however you achieve it.

Shin Terayama, a Japanese physicist, was sent home in 1984 to die from inoperable, metastasized kidney cancer. His doctors halted treatment. Shin accepted death, but after decades of a panicked, fearful work life, he wished to achieve serenity in his final weeks. He watched the sunrise atop his apartment building every morning. He meditated through breathing exercises and aligning his chakras (a Hindu and Buddhist practice). He took up again the cello that he loved in his youth, and switched to a macrobiotic diet. He refused to hate his cancer; rather, he loved it like a child he had created.

To both his astonishment and that of his healers, he lived, and lives today. Shin didn’t battle cancer. He swam it like a river, neither resisting nor panicking.

Shin inspired me to look into chakra work, much of which is clearing “blockages,” letting go of miseries, injuries, pride. But the Christian faith with which I was familiar had similar answers.

I had much of which to let go. Between ADHD (clinically diagnosed) and chronic, lifelong depression, I hadn’t enjoyed a peaceful day since the crib. No self-help book or antidepressant cracked my code; but Christ did, guiding me to peaceful ways to think, to act, to be. If I am to “Love thy neighbor as thyself” (Matthew 22:36-40), anger and wrath are impossible. Knowing that “God hath not given us the spirit of fear; but of power, and of love, and of a sound mind” (2 Timothy 1:7), I came to believe that fear is faith in Satan, not in God. And, fear can be chased off with Jesus’ words, “Get thee behind me, Satan: for it is written, Thou shalt worship the Lord thy God, and him only shalt thou serve.” Fear—even of cancer—is simply against my faith.

Imagine what such serenity can do, integrated with chemotherapy? Or, to prevent cancer in the first place?

Remember David’s sling.

Sling-Small
A shepherd’s sling, like David used to slay Goliath. With God’s blessing, it was enough. Plenty.

I pray to God, “Anoint my healers and their medicines as you anointed David and blessed his shepherd’s sling.” Clearly, he does.

And, He created the foods He knew would sustain the very creatures of his design—foods like legumes, garlic, papaya, and beets, all with anticancer properties. Pringles and cream soda (once my favorite snack) are Man’s doing, and did me no good.

So, chemo means survival. For some, it is all we need. But can we take that chance? I am certain that integrating chemo with diet and faith allow me to thrive. An even deeper faith, plus a new clinical trial, will cure me.

Godspeed. 9.