CLL – God, Grit & Chemo

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.

Godspeed.

“Whither thou goest, Baby.” Keeping our vows during crisis.

Love goes both ways. What do we owe our partners?

At times, we look to our mates and think “Go. Save yourself. I can give you nothing, anymore.”

Whatever we promised in our first days, or on the marriage altar—all the vigor and health and humor and selflessness we once offered—is lost. Not that we surrendered it, apathetically. We were robbed of it. What we offer now is, perhaps, a slim chance of a future, and a ceaseless threat.

That is how I think on my worst days. They come like speedbumps on a dark road; without warning, a sudden slam, a jarring of the bones and certainty of damage. Yet after a few tentative yards at a slower speed, I find all is well.

On my best days—nine out of ten of them—I promise Sadie Mae, with absolute certainty, “Don’t you worry; I’ll be here for our 10^th wedding anniversary (this October), and Christmas, and both our 60^th birthdays.”

1stThanksgivingCropped — Our first Thanksgiving, post engagement. Taken in Maine, and at a distance, by my mom.

Sadie Mae was no speedbump; more like turning the corner on a dull road to find a gorgeous vista ahead and saying “I never knew this was here!” She lived nowhere near the city where I was, cared nothing for “meat-and-greets” that young Bostonians attended (yes, I meant “meat,” not “meet”), appreciated antiques, taught school, and volunteered at a halfway house for refugees of Somalia, Iraq, and places like them. At 110 pounds, she had gladiator-sized self-possession. As my father said of her, after I brought her to my parents’ house for the first time, “Some people you meet, but you don’t really care if you see them again. Others you meet, and hope they come back.” Such is Sadie Mae, and in just under two years, we wed.

“You forget that I love you.”

My first Christmas gift to her as my wife was a large, framed etching of the painting “Ruth and Naomi,” from the Old Testament story (Ruth 1). We found it in an antique store, while on a lazy Sunday drive in late November, and she had admired it for several minutes. Finally, she talked me out of buying it for her, but I returned alone the next day to do just that.

Ruth Clings to Naomi, by Philip H Calderon — Philip H. Calderon’s “Ruth and Naomi.” That guy on the left is Naomi. Calderon painted her kind of butch.

The story of Ruth would become profound to us. Ruth was Naomi’s daughter-in-law, but her husband (Naomi’s son) had perished. Naomi determined to live out her years in the city of her girlhood, and told Ruth, in essence, “Go, to the house of your mother. I offer you nothing—no more sons, no wealth, no comfort.”

Ruth replied (again, in essence), “You forget that I love you.” Subsequently, “Whither thou goest, I will go…Where thou diest, will I die, and there will I be buried.”

A selfishness, not of our choosing.

What in Hell kind of rat bastard husband spends every dollar his wife earns on himself, and controls how she spends her time?

I do.

Sadie Mae makes a big, triumphant real estate commission check; we spend it on my co-pays.

Her every Wednesday is committed to a heart-in-the-throat appointment at Dana Farber, hoping my blood blasts (the cancer cells—once as high as 75%) are in the low teens.

We don’t go out to dinner or movies (both cost and germ considerations). I’ve never flown her anywhere on a vacation.

The January 2015 blizzard turned our enclosed patio into a Box o’Snow that walled in our slider; she shoveled out a path for our greyhound, ‘Teo. (I was no help, as I was “incarcerated” at Brigham and Women’s hospital.) She scrambled to find care for ‘Teo, then drove our aging Pontiac over unsafe roads (against my insistence) to be with me for Saturday “date night,” when we ate hospital pizza and watched the hilarious “American Hustle.”

“’Whither thou goest, Baby,’” she told me that night, and often. In essence, “You forget that I love you.”

“But I would never bring you here,” I told her that night, and often. Never of my own choosing.

What we surrender, vs. what we still control.

We are committed to keep our vows of endless joy and contentment, in whichever ways we can.

We come to our mates with full heads of hair, two breasts remarkable for their perfection, two testicles with no remarkable nodules, a prostate too young to worry about, two able legs, and the promise of summers and flights with bathing suits in our luggage and decades of intimacy, marked by wedding anniversaries. We also promise endless joy and contentment, then, are forced to break our word.

At the same time—we are pledged to keep our word, in whichever ways we can. To recognize that much is still within our control (some of which I touched upon in earlier entries):

Commit to the discipline of survival. Like a young violinist auditioning for the Juilliard school, or a high-school athlete aiming for a college scholarship—we can greatly increase our chances of survival. We can make the dietary changes outlined in Anticancer: A New Way of Life. We can commit to the life changes outlined in Radical Remission: Surviving Cancer Against All Odds, in which changes in body, mind and spiritual factors save those “sent home to die.” If we must be the one with the cancer, let our partners rest in the assurance that we do everything possible to stay. Not just survive, but stay in the relationship, as we promised to do.
We can demonstrate, “You matter.” At one time, our relationships were balanced; it is easy to allow an imbalance wherein we, with our health needs and day-to-day condition, dominate. How much did you used to talk about your mate’s work? Or interests? Do you still ask, or does every conversation begin with you and your condition? Likely your mate has indulged your every taste to comfort you. But no, I don’t expect Sadie Mae to sit through westerns that bore her.
We can thank them, for every kindness. Every single vitamin smoothie they make for us, every time they walk the dog because we’re fatigued. Whatever my failings, I thank Sadie Mae every Wednesday, when we return from Dana Farber, for getting me there and back safely; also for insisting upon being at those appointments, lest the news be bad. That’s something a wife might experience once in her marriage. Sadie Mae has done so dozens of times.
Cheer up. It is easy to allow our homes to become The House of Usher as in the Poe tale, with the sun blocked out. We can become the wraith that shambles about the house, terrifying all who live there. Or, we can groom ourselves, change out of that bathrobe we wear all day like a death shroud, then present ourselves at breakfast, at dinner. We can pick the movie, commiserate over groceries and pizza orders, cook dinner, and walk the dog—whatever our stamina allows. We can live, to the limits of our strength; and in doing so, build more strength. Radical Remission describes a state of joy that miracle survivors demonstrate. However dire their prognoses, they work to release negative and pent-up emotions, and find positive ones.

Usher Illo Small — From “Fall of the House of Usher.” What’s not to love about *that*?

We can make our mates our raisons d’etre, our very reason for being. No—this is not another brick in their yokes (“You’re responsible now for my very survival!”). It is a brick in ours—our responsibility. I will not leave Sadie Mae behind; we haven’t had a 10^th anniversary yet. And I want to clear up the financial burden that my “sniffles” have yoked her with, as well as me. And, I promised her joy. I want, above all, to deliver her the joy of my survival; a day in which an oncologist tells us, “Your prognosis is that of anyone else. Go. I’ll see you in six months.” I want to see the look on her face. Then I want to fly her to Ireland and find her great-grandmother’s house in Galway.

Every day I succeed in one or two of these things and fail at the rest. But I pray daily, something like “Lord God, you have the power to cure this like whisking a fly off your sleeve. That is all it would take to give Sadie Mae peace. Please, make it your will.”

If your mate is like mine, your suffering has been eased, enormously. We must ask ourselves, daily; what can we do to relieve theirs? (And no, we are not powerless to do so.)