discipline – God, Grit & Chemo

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.

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.

My 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 10^th 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.

When to say, “I do need support, but not yours.”

Forgive awkwardness, but shun toxicity.

When townfolk visit us at The Big C Ranch (my name for Brigham and Women’s Hospital), a little clumsiness is forgivable. We were flummoxed when we were diagnosed; so are they, and they try to comfort us in the best ways they know how.

Scheffer, Ary, 1795-1858; The Temptation of Christ — Jesus didn’t always “hate the sin but love the sinner.” Sometimes he commanded, “Get thee behind me.”

Our grandmas, bless’em, arrive with brimming pots still warm from their stoves. They don’t want to hear from smarty-pants doctor talk like “immunocompromised” and “outside contaminants.” Grandma keeps a clean kitchen, she knows what her ragazzino/bubeleh/niñito needs, and it’s her meatballs and gravy/matzo soup/chiles en nogada. She’s trying to save your life—nothing less.

Your humor’s a bit thin, but the “laughter is the best medicine” sort believes he’s helping when he jokes, “When your body hair grows back, you can brag about getting your pubes all over again! Aw c’mon! That was a good one!”

The scoffers mistake it for comfort when they belittle our modesty and senses of loss. They snort, wave a dismissive hand and say “It’s just hair! It’ll grow back!” Well, scoffer, if it’s “No big deal!” and I should “Just let them do it,” then let a nurse swab your damned rectum for C-Diff bacteria.

The malignant.

Nosferatu Bedside — “Don’t you worry,” soothe The Gatekeeper and the Chemo-Sabe. They will never leave your bedside.

A clumsy person may be forgiven; a malignant one must be shunned. We’re stocked up on malignancy, and I’ve observed six “supporters” who will drain the life from you, heedless of how short that life may be. (I wasn’t tasked by these pestilent six, but agonized while friends suffered them.)

The Ghoul thrills to the details of your suffering. How bad is the surgical scar? Does the chemo make you vomit? What’s the most embarrassing part of it all? “I only ask because I care,” but how long do you have to live? Would dearly like to see the blood clot the size of a baby’s finger that you sneezed up this morning.

The Smartest Guy in the Room undermines your confidence in your healers. He has their number. Lapses into stony silence whenever one of “them” (e.g., a nurse checking your vitals) enters your room. Sneers at Western Medicine and Big Pharma (crooked and in cahoots), but believes in cannabis and any cure that originated centuries ago, in India or eastward.

Forgive the clumsy, but shun the malignant. You’re stocked up on malignancy.

The Prodigal Father never paid child support, and missed your wedding. Learned about your cancer through the one cousin who still talks to him. But “I’m here now. And no one—especially That Mother of Yours—can say Joey Buttaroma doesn’t love his little girl.”

The Chemo-Sabe clings to you like Tonto to The Lone Ranger. Demands to know who visits you most often, and visits one time more. A gossip who won’t leave until you’re angry with someone else. Declares himself/herself shocked that Paul/Nancy/Carla/Phil hasn’t come to see you! But where Paul and Nancy have failed you, the Chemo-Sabe never will.

The Gatekeeper is often the sibling or cousin with whom you got along least. But she’s here now, to protect you from everyone else (“She needs her rest, so no one gets to her unless it’s through me. That goes for even you, Ma.”). Insists “You and me. We’re gonna beat this thing, together.”

The Serpent offers to sneak in wine, a Subway foot-long BLT, marijuana in brownies, because “You’ve been through Hell, you deserve it!” Never mind the life-threatening risks of salmonella or drug interactions—“Doctors have to tell you that stuff.” Will take you straight to a bar to “cut loose” once you’re released. Like The Gatekeeper, tries to get between you and others (viz., “Don’t tell that judgmental brother of yours, he doesn’t know how to live”).

You’re in need, but they are needier.

“It’s not your blood they drain; it’s your emotional energy,” wrote Dr. Albert J. Bernstein, who reckoned demons like these in his 2001/2012 book Emotional Vampires: Dealing with People Who Drain You Dry.

What do they need from you?

The Ghoul seeks the kind of thrills that can only be got from human suffering. May not be a sociopath, but has all the sensitivity of one. Will lose interest in you when you are cured.
The Smartest Guy in the Room needs you to acknowledge his superiority, even in a hospital like Brigham and Women’s surrounded by healers who never got an A-.
The Prodigal Father needs your validation that he hasn’t failed as a parent, which only you can grant. He’ll then wave that knowledge under the nose of That Mother of Yours.
The Chemo-Sabe is likely awkward, friendless, and you are a zoo animal that she can visit at will.
The Gatekeeper’s devotion to you proves his/her value to those who (often rightly) question it.
The Serpent is usually a sociopath, bent on punishing you for the sin of courage, or for pulling attention.

They likely mistake their ill intent for good, as the emotional vampire is usually an horrendously poor self-observer.

Strategies to protect yourself.

Ask yourself simply, whose visits do you anticipate, and whose do you dread? Make a two-column list, and be merciless. Only you will read it.

Whose visits do you anticipate? And whose do you dread?

Having discerned between the two, there are several actions you can take:

Surrender your need to please. Easier to say than to do. But The Ghoul, The Prodigal Father and The Serpent have no feelings to hurt.
Tell them, “Please don’t come, I need to rest.” This is no lie. You do need rest, and visits from The Ghoul and Chemo-Sabe aren’t restful.
If you are unassertive, enlist someone who is. Perhaps in your emotionally wrung-out state, you can’t bring yourself to confront The Gatekeeper by saying “You’re not in charge of who sees me, I am.” Then ask your warhead of a sister/brother/best friend/mom/spouse to say it for you. They’d be delighted.
Enlist your nurses as bouncers. They are charged with your wellbeing—physical and emotional. Tell them, simply, “I’m expecting my parents today; please don’t admit anyone else.”

Jeez, isn’t that really judgmental?

No. It is discernment. Surrounding yourself with healing energy, and protecting yourself when you must.

As a kid, did a friend give you your first cigarette? Sneak a Budweiser out of your dad’s six-pack? Maybe get you to shoplift? Your parents likely demanded you drop that friend. They didn’t wast time “hating the sin, but loving the sinner.” Their child was imperiled, and they acted. They let God sort out the sinner.

That is discernment, and both the Old Testament and New teach us to protect ourselves from the ill-meant:

“And whosoever will not receive you, when ye go out of that city, shake off the very dust from your feet for a testimony against them.” (Luke 9:5.) Jesus taught, if you are not heard—and these six are deaf to what you truly need—then disengage.
“I have not sat with vain persons, neither will I go in with dissemblers.” (Psalm 26:4.) Dissemblers are liars, and “dis-assemblers” who come between you and others.
“He that goeth about as a talebearer revealeth secrets: therefore meddle not with him that flattereth with his lips.” (Proverbs 20:19.) A gossip, like the Chemo-Sabe, is a talebearer.
“Avoid profane and vain babblings, and oppositions of [knowledge] falsely so called.” (1 Timothy 6:20.) This applies to The Smartest Guy in the Room, especially, who wants to shake your faith in your treatment.
“But shun profane and vain babblings: for they will increase unto more ungodliness.” (2 Timothy 2:16.) Simply put, shut down a liar, dissembler or gossip immediately; your further corruption is their joy.

You have the permission of Christ, King David, King Solomon and the Apostle Paul to protect yourself.

With the chaff sorted out, we are left with the wheat; those whose visits leave us feeling energized, optimistic, healed. On my list “Lifts My Spirits” were my parents, my Sadie Mae, her magnificent brothers and their wives, alongside my old pals Bill, Erik and Frank.

There were but two names on my list “Leaves Me Drained,” each with the same flaw—a mean temper. After her latest tantrum, over grammar (she teaches writing at a university), I definitively told one, “Do not visit, do not phone, and I’ll update you if I survive.” I repent of my sarcasm. But I’d been trapped alive in the Big C bunkhouse for a seven-week round of chemo, with almost four weeks to go, and no guarantee of survival.

Those are the stakes, no less. We need our depleted energy for survival. I wouldn’t risk a minute of life with Sadie Mae, arguing with someone else if “thusly” is a word.

You have the permission of Christ, King David, King Solomon and the Apostle Paul to protect yourself from emotional vampires. Please, do. Trust in God; He’ll sort’em out.