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.

1000 days of thriving with cancer. Here’s how.

I call it “the sniffles.”

An oncologist told me that I have the “King Kong of blood cancers.”

I call it “the sniffles,” but am not deluded about its threat. Acute myeloid leukemia (AML) is the most stubborn of blood cancers to cure, and alas, has the shortest prognosis. People die within days of diagnosis.

Or, they live for weeks, months, years, decades.

As of August 5, 2017, I have thrived with AML for 1,000 days, or 2¾ years. I am uncured; a bone marrow transplant failed, a second round of chemo failed, as have four clinical trials. I should be long gone.

CountingUpTheDays_small
I count up the days of life, post-diagnosis. Here, I mark 1000. What I never did was count down the days I had left (which were as low as 30, at one point). That’s Edgar Allen Poe morbid.

But a few days ago, a wonderful nurse at Dana Farber Cancer Institute in Boston told me that, after years on the job, she knows a cancer sufferer on sight; but that “I’d never guess you’re one of them.”

I blushed. Comments like those please me, of course. But to be proud of my survival would be like the spoiled teenager who thinks his dad’s Rolls Royce is his own. These 1,000 days are 1,000 gifts of God (and of the healers He anoints). After 1,000 miracles, I trust Him to give me decades.

I promise, I won’t try to convert you in the paragraphs that follow, or ever. My faith has helped me survive, and does the same for Jews, Buddhists, Muslims and Hindus as well. And atheists thrive with and overcome cancer, in whichever way they seek a right mindset.

Following are a few lessons I’ve learned, and I hope they help you navigate your survival.

I wish you Godspeed.

Defy cancer; but do not fight it.

Far be it from me to condemn soldiery, and the courage it takes to do battle. But my experience is, to “fight,” “do battle with” or “kill” cancer is not the right mindset to survive it.

In a fight, someone loses. In battle, sometimes the tyrant wins. Besides which, fights and battles are exhausting, and raise both cortisol (the “stress hormone”) and adrenaline levels in the blood, creating an environment in which cancer thrives.1

The Mahatma Gandhi won Indian independence without fighting. Instead, he defied British Imperial rule, with such actions as leading his people to the Indian Ocean to make salt—something they had done for millennia, but which was co-opted by the British. Never did Gandhi take up arms against Britain, and he famously abandoned his resistance when his followers were tempted into violence. His was no passive resistance; it was active defiance.

Gandhi’s touchstone was Jesus Christ. He too, never took up arms, even preaching “Put up again thy sword into his place: for all they that take the sword shall perish with the sword.” (Matthew 26:52.)

Make no covenant with your disease.

In the spirit of defiance, the “Catholic Prayer to the Divine Physician” puts it wonderfully well:

“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.”

Truth to tell, I never made any agreement with AML leukemia. I should have died two years ago (for I’d been given less than six months). An oncologist told me “You should be in a wheelchair with an oxygen tank,” and another, that I should be unable to work. (I have no choice but to work. Freelance writers get no disability.)

I remain willfully ignorant of how I should feel, what capabilities I should have lost, how long I should live. None of these is a law.

Trust in science; but not in statistics.

“Wait a minute! Are you saying you don’t trust medical science?”

Of course I do. Else, I wouldn’t waste my time at Dana Farber, getting chemo and awaiting the next clinical trial.

No law of science or of averages compels you to be average.

But all science is not the same. In chemistry, once a result is proven, it is flawlessly reproducible, under identical conditions.

Medical science is far more inexact, with unpredictable variables. Drug effects vary wildly among individuals; so do prognoses, which follow a bell curve, like the one below (just an example, and not specific to any cancer). Imagine that the horizontal axis represents ten years, and the vertical axis, the number of people who die at a given point in those ten years. Here, the median death occurs at about 1 year. But—there are outliers who die sooner, and many more who die later.

Left-leaning bell curve
AML survival has a left-leaning bell curve, like this one. Alas – the peak is where most perish. To the right are those who surpass the norm.

If a physician tells you “You have less than six months,” that really means, “The law of averages says you have six months.”

But no law—not of science or of averages—compels you to be average.

Never mind how you got it. Get busy surviving.

Of course you want to place blame for this great unfairness. But blame is dispiriting. You’ll blame yourself (for using chemical cleaners, eating crummy food), or someone else (and yourself in turn, for allowing that person to give you cancer).

OK, if you’ve smoked filterless Chesterfields for decades and develop throat cancer, you know the cause. A Vietnam veteran friend knows that Agent Orange left him with lymphoma. Yes, you could have quit smoking sooner, and that soldier could have dodged the draft. But millions live into their 90s using cleaners with carcinogenic benzene in them. And what could the six-year-old with leukemia have done differently?

Be especially careful of blaming someone for your cancer: “Childhood bullies scarred me for life and they’re killing me now,” or “I let my husband cause this with years of emotional abuse.”

To blame someone is to grant the power of life and death to people which they don’t have. I’ve heard no conclusive, or even compelling evidence linking anger or depression with cancer. (I won’t discount it, as research is ongoing.)

But consider deathcamp survivors, who faced unimaginable injustice—the loss of homes, loved ones murdered, ceaseless brutality—with no possible remedy. Or soldiers with PTSD, or people whose lives were derailed by sexual assault. If any study has discovered a hard link between those experiences and cancer, we’d know it.

For the unafflicted, I’m not saying “Don’t even try to avoid it.” Of course, use natural cleaning agents, eat less processed food, use sunscreen. And find peace. I’m unconvinced of a link between misery and cancer, but can we take that chance? Your diligence will probably reward you. (But alas, maybe not.)

So, never mind the cause – likely, it is a genetic mutation, as random an occurrence as where in the pasture a cow leaves its droppings. If years of drinking and smoking like Humphrey Bogart triggered my leukemia, so be it. Self loathing won’t heal it. If processed foods truly contributed to your child’s cancer—despite all her classmates enjoying Goldfish crackers and boxed juices—very well.

What can we do now?

Know your reasons to live. Reckon them one by one.

I welcome the afterlife, of course. But not yet.

In the spirit of defiance, an aunt of my wife, Sadie Mae, said (at her own husband’s funeral), “I told God, ‘I’m not going.’” She had had two brain aneurysms in her forties; and yet had young children and a husband who had no idea how to manage a household. She would go when it was convenient to her. Meanwhile, she got busy relearning mobility, through hundreds of hours of physical therapy

I compiled a long list of reasons to live, which I add to, daily. Among them:

  • My Sadie Mae and I found each other in our forties, have had but a decade together, and I refuse to leave her.
  • I have yet to publish a novel, and don’t want to be remembered as an “aspiring novelist.” They aren’t remembered, and John Steinbeck is.
  • My big-eyed, sweet greyhound ‘Teo, who walked around like a ghost when I was hospitalized for eight weeks. I will not break his heart.
  • Neither will I predecease my parents, and break their hearts.
  • I cannot stop providing for my wife and pup.

Finally—and I have AML to “thank” for this—I love life. Life on Earth. As I never have before.

As I said above, Sadie Mae and I found each other in our forties. I thought she was all the contentment I could hope for; but lasting contentment came after being diagnosed. That is when we began to rise an hour earlier, to begin the day with French-pressed coffee and one another. Every day I am promised deep contentment, upon waking. No day was like that, until now.

As a Christian, I welcome the afterlife, of course. But not yet. As King David asked of God, “What profit is there in my blood…Shall the dust praise you? Shall it declare your truth?” (Psalm 30:9.) It cannot. But I can, if I stay here.

Lord God, thy will be done. But my cure is my will. I pray thee, make it yours as well.

Godspeed.

1David Servan-Schreiber, MD. “Cancer’s Weaknesses,” in Anticancer: A New Way of Life. New York: Viking, 2009.