Thank You #1

The shifting cluster of white coats descending upon my cubicle last August was diverse, and most welcome. I explained what’s wrong with me, and they explained what they needed to do. Since I was coming from another hospital, with information about previous tests, they needed time to take a look at the pathology reports and the scans. Give them two weeks, they asked. Tough to wait like that, they said. But necessary, since the previous docs had diagnosed a very rare form of pre-cancerous tumors.

They were almost out the door when Michael recalled the other nagging revelation from the diagnostic test called an “EUS”: there’d been something, a shadow or something, spotted on my liver. What would the GI docs be doing about that? A flurry of murmurs. “Probably nothing,” seemed the consensus, and with general noises of dismissal, they were gone.

I’m a graduate of UAB, half my family’s been working or going to school at UAB my whole life, my friends work for the University, the writers I know write about UAB. I make enough money hosting UAB’s international medical students at my home to call myself a writer. I hear people around the world praise UAB’s prowess as a place of healing, and I’ve never, ever met a cancer patient from UAB who wasn’t receiving impeccable care.

At first, the intersection of my cancer and UAB seemed like a gift. I’d discovered late in the game there was a possibility of cancer, the previous doctor’s office had dropped the ball, and in late August, the earliest available appointment with UAB’s GI Clinic was in early November. Then I got a call: a cacellation could put me in to see Dr W— in just ten days. “Yes, yes, yes,” I sang, because waiting for bad news is such a toxic state of being.

So. Two weeks of waiting. Fourteen days, a mere 20,160 minutes. I’ve learned to live one day at a time and even one minute at a time. I know about mindfulness and compartmentalization and when to take a nice deep breath*. I’ve got my very best friend in the world by my side, family never far away, and not one but two long-standing, deep-rooted support communities available seven days a week. I’ve got a sense of humor, a car that runs, and a reasonably stable (if small) income. I have a bike I just learned to ride in fall 2016. Dragon*Con was a glorious four-day fill of fantasy and fun and loopiness. I decided not to drink any alcohol because I was, a little, worried about my liver. As always, travel beckoned, pocketbook negated the possibility but I dreamed about roller coasters and foreign beaches anyway.

And I waited. Two weeks to the day, ten a.m., I called the GI Clinic. I’m not sure if I spoke with someone physically in the GI Clinic, although I thought I was talking with a medical professional of a sort. I believe now most of my contact was through a UAB call center, a building somewhere on campus surely teeming with polite young men and women who take and relay messages, strictly on a 8 a.m. -5 p.m. schedule.

The person on the other end of the line told me that Dr. W-, my doctor, was on vacation, and would be out for ten days. I stammered a bit. I couldn’t fathom the idea of waiting another ten whole days. Then I told her I was anxious to hear my test results. She perked right up and said Dr. A- was covering for his boss and she’d leave him the message. When the doc picked up my message, she’d call me, she explained. Then she’d call again, a few hours later, to make sure the doctor actually made contact. I was impressed with the thoroughness of this telephone protocol and somewhat mollified.

Twenty-four hours later, I had another operator on the line. Dr. A- hadn’t picked up the message, she told me. And even once he picked up the message I had to allow him 24-48 hours to return my call. I gritted my teeth and politely left a second message. Wednesday, I got teary on the phone, the operator prayed with me and for me, then connected me with an actual person sitting in the GI Clinic. This young woman told me that Dr. A- saw my message and commented out loud to her that he didn’t know what test results I was referring to, so why should he return the call.

By this point, I’d developed a really weird thing about my cell phone. It became a focal point for my anxiety, and I developed a sick sort of love/hate cycle of letting the charge run out, losing the charger, accidentally turning off the ringer, leaving the phone at home or in the car. So this three days I was waiting for the call back from Dr. A- was a frantic dance with and about that fucking piece of plastic, culminated by my actually leaving it on a shelf in Walmart and driving cross-town. It seemed to take a Herculean effort to keep my phone in working order and answering it as painful as a root canal. I still wince when it tweets, pings or rings.

My phone had been lost for a couple hours when Dr. A- finally returned my call, and I was not in a good mood. His first question was this: “Why haven’t you signed up on the patient portal?” Nobody had told me how to sign up, was my answer, this and all other times he asked. He was jazzed about my test results. “It’s really, really rare! We’re going to present it next Tuesday!” I asked him if the UAB pathology report confirmed the findings of the first doctors. “Oh, no, they got it all wrong,” he replied cheerfully. “It’s not a neuropappillarysuchand so at all, it’s a blatheringblahblah.”

“It’s what?”

“Blatheringblahblah.”

“Aaah, is that cancer?”

“Ms. Zweifel.” Very stern. “Why haven’t you signed up on the patient portal? It’s very important that your doctors be able to communicate with you.”

Away we went. I answered him, then circled back round to the question of whether this was a cancer diagnosis or not. He asked about the patient portal again instead of answering. It took like three days after having the conversation to put it all together, but every single time I asked that poor doctor if it was cancer, he changed the subject to my noncompliance about the patient portal. He had to know I had pancreatic cancer, but he didn’t want to tell me. And I had no one else to ask. It would be another ten days after this confused and confusing conversation before I saw a doctor, and a month before I spoke to an oncologist.

 

*whenever it occurs to me, the more often the better

 

This is me, asking for help.

Hey, is this your image? Artist unknown but appreciated. Stencil on concrete, circa 2013 From my camera.

Hello, my friends. It’s been confirmed. I have fourth stage pancreatic cancer, a type of rare and relatively slow-growing neuroendocrine tumor. The five-year survival rate is 20-25%. I’m getting care at Emory University’s Winship Cancer Center in Atlanta; they have a specialty clinic for this type of pancreatic cancer. I am praying and scheming to make my personal 5-year survival rate 100% and you are already drafted as a co-conspirator.

I’m so very fortunate in so many ways! I’m frequently staying with Michael. His new place in Atlanta’s Westside is comfortable, convenient and cat-equipped. I have a decent chunk of life insurance and short-term disability resources, due to my early adventures in advertising (I sold myself on the idea while creating the advertising for it, an occupational hazard). But these benefits take time to line up.

For a year now work has been difficult and symptoms like pain, diarrhea, nausea and vomiting have made writing to deadline stressful. Since my surgery in October, narcotic painkillers keep some pain at a distance, but with the unfortunate side effect of distancing myself from my brain as well. These same issues, plus geographic distance, are complicating my ability to earn from my other business, hosting international medical students for 3-6 month stays.

So I’m asking for that kind of help, too. Financial. If you can kick in a few bucks, I would really appreciate it. I’ve been shitty my whole life about writing thank you notes, but I will post a thank you note of at least 1,000 words for every $350 raised. I love you.




Bad News

Hello, my friends, I have some news to share. I am having surgery at UAB Hospital on October 27. My dear sweet son Kai is coming to town the day before, and will be with me while I’m in the hospital, about 4-5 days. My strong, sweet sister Jan is coming to help me once I get home. I’ll be recovering my strength, appetite and energy for about a month.
 
I have pancreatic cancer, a slow-growing NET tumor, which has spread to my liver and one lymph node. I also have some great doctors and an incredible support network, starting with my beautiful mom and extending into my beloved parish family, great folks who raised their kids with me, and a far-flung network of medical students who graced my life for a few weeks as temporary family. And the unexpected, vibrant gift of a longstanding friendship that has grown beyond my wildest hopes.
 
(And now I must pause to assure you that Michael Pond is not perfect. He’s watching NASCAR as I write and I swear to heaven he just said “yeehaw.” I think for the pink car.)
 
I believe in miracles. Please pray for me, light a candle or think positive thoughts or visualize my innards bathed in golden light. I’ve done all that and more, and won’t stop. I’m also riding my bicycle and enjoying the fall, Michael’s company, and as many funny movies as we can stand. (Laughter is the best medicine, I tell you!)
 
I’ll be back in Birmingham, at my house, for a few days before the surgery. After I recover from that, the oncologist will re-evaluate the cancer starting with a super-ultra special PET scan available no where else but here. I’m feeling good.

Be Still

first published in “Through the Red Door,” the blog for Recovery Ministries of the Episcopal Church.

Headed out the door, late as usual, I paused with my hand on the key. The neighbor’s cat was immobile on the front porch, deathly still, ready to strike. My eyes sought out his prey. After a moment, I saw it: a lizard or green anole, just three inches long. It was a dusty, unremarkable brown, still as a stone, about three feet off the ground. It was out of reach of the cat, but was it aware that it was safe? Looking closer, I saw its throat was pulsing rapidly, and it looked like fear to me.

When I am fearful, anxious, out of control, I forget to breathe and lose my focus, paralyzed by the threat I am so certain is about to pounce. Then I am best served by stillness, because that’s how I sometimes discover how to act, think and become what my Higher Power has in mind for me.

How ironic, that the apparent source of its salvation at that moment caused even more distress.

My first impulse was to rescue the lizard from the fanged, clawed predator, but some instinct or maybe just curiosity stilled my movement. I stopped and witnessed the stand-off, a miniature high img_8214noon, completely inconsequential except to the three-inch anole. For the lizard, it was literally a life-or-death situation, and I wonder now: did those few seconds feel like an eternity to the cold-blooded creature?

Then, because of impatience or a short attention span or a desire to look like a responsible adult who owns a clock, I twisted the door knob. The cat, quite accustomed to my comings and goings, barely flickered an ear. The chameleon’s throat seemed to pulse even faster. How ironic, that the apparent source of its salvation at that moment caused even more distress.

I told the cat, quite nicely, to leave the poor beastie alone for the time being, and Rocket complied with feline aplomb. That is, he ignored me for a leisurely beat or two before strolling a few feet away and burying his nose between his long, upthrust legs.

I stood on the threshold and watched the lizard. The fresh air reminded me to breathe, and the deep stillness of the creature gave me a little jolt of joy. As I watched, and breathed, and remembered to be grateful, an electric, vibrant green crept from one end to the other of the chameleon, a transformation so soothing, so astonishing, so poignant I gasped – and just like that, the lizard disappeared.

When I came home hours later, no sign of the lizard. But Rocket, my neighbor’s cat, was sprawled across my front step, and deigned to allow me the pleasure of sinking my fingers in his silky, warm belly fur. He purred, and it was as if we had never held the balance of a tiny life in our control. Perhaps we never did.

A Review of

Swimming From Under My Father

by Michael O’Keefe

51mgthfspyl-_sx339_bo1204203200_Well-written poetry drops into the mind like a smooth pebble. Each word can be savored, explored for multiple meanings, tasted and turned over. But there’s very little candy coating waiting to be dissolved. Very quickly, readers are compelled to return to the rock-hard certainty of that single word placed with great deliberation on a mostly vacant page. It’s feelings, bared to the bone, unmistakable, especially for those with shared experiences.

Actor, songwriter, poet Michael O’Keefe learned early on what power there is in sharing emotions. Nominated for an Emmy for his role as teenaged Ben Meechum in The Great Santini, he played the role of a child of an alcoholic with unusual intensity. Perhaps that was because he lived it before he acted it. In a collection of poetry titled Swimming From Under My Father, he takes us with spellbinding simplicity through the process of growing up that is often part of a recovery journey.

The first section is titled “Entering.” Like the first tentative sticking-in-of-toes, O’Keefe comments on the pain that brings all of us to desire recovery, hinting at the seductive and addictive qualities of those remedies we concoct to relieve our own pain. In “Onstage With The Leading Lady” O’Keefe observes “the theater is a drug that relieves the reality we suffer”. The price of that solace is the expectations of the audience and the risk of not meeting those needs as they are “waiting in the dark for a ritual to identify themselves”.

Anyone who tried growing up with the disease known as “cunning, baffling and powerful” will recognize the childhood deficits O’Keefe catalogs: trust, laughter, safety, predictability.

The section ends with a dawning sense of poignance in “His Thumb Hooked Me”. An old Romanian rabbi hitches a ride and O’Keefe finds small gifts in the absurdity of a chance encounter. “What do you do?” the old man asks. “I’m trying to forget,” is O’Keefe’s reply. Then a few more blocks down the road the poet seems to reach for something deeper: “my prayer is to forget,” he says, to forget “myself.” As if in answer to his prayer, by poem’s end, he seems to have forgotten the significance of the old rabbi altogether.

In the second section, entitled “Swimming,” we are submerged into deeper water: O’Keefe’s childhood, when “Things you had to do to survive back then:/Lie, hide, never cry,/and be STILL.”

The tension finds some relief in O’Keefe’s wry humor referring to his Roman-Catholic upbringing, the rapid family growth, and the unspoken effects of alcoholism: “Pop had a quaint two-quart a day drinking habit that/reeked from the basement on Alden Rd./to the community of Saints/Mom put her faith in daily.”

Anyone who tried growing up with the disease known as “cunning, baffling and powerful” will recognize the childhood deficits O’Keefe catalogs: trust, laughter, safety, predictability. As a grown man, now, he’s worked his way free of those losses, to some extent. But then the cruelest irony: the tormenter, the strong one, becomes weak, needy, confused. “My father’s tide is going out./Seeing his cognitive abilities/ in a puddle on the rocking chair porch/ I am kicked in the head by time.”

O’Keefe documents his own way out, a rescue in a sense, in the title poem, “Swimming From Under My Father.” It’s ambiguous, the road to the water hazy, the transition from car to water’s edge an awkward one, but there is redemption there, and grace.

Applying that grace to his relationships and the center of his life is the topic of the third section of poetry, titled “Emerging.” Mostly short, gently self-mocking and fully self-aware, the poet’s emergence into the grown-up world involves, among other things, “Confession,” “What We Have In Common,” “Love,” “Forgiveness,” “Lunch With My Brother” and “Five Ways of Looking At It.”

Finally, he acknowledges that we each struggle to do the best we can: “We abide here/ and nowhere touching nothing./ Especially not one and other./ This arm’s length between us/ is the only way we know.”

This book has only a few thousand words, but you’ll feel every one of them.

–Karyn Zweifel

 

Love Wins

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Michael and me at Dragon*Con in September.

Every year, my parish family compiles a book of Lenten Meditations. We’re each asked to read and reflect on the day’s assigned scriptures from the Old Testament, the New Testament and the Gospel. This year, I chose to write about the epistle: 1 Cor. 13:1-13. Here’s what I wrote:

Choosing between the readings assigned this year was tough. I want to share with you that the voice of God from the burning bush was actually the voice of Charlton Heston, Moses’ own voice, as portrayed in the classic “The Ten Commandments.” I’d like to talk about how I struggle with belief, like the boy’s father from the Gospel reading, and how his cry “I do believe, help me overcome my unbelief!” resonates for me. But that would be too easy.

Instead, here’s a confession: every time I hear those verses from Corinthians, for almost thirty years now, I gnash my teeth or cringe or crumble a little around the edges. I can’t love people like that. I can’t be always kind or eternally patient; I get angry without cause. I hold grudges. This winter, by God’s grace, I keep reading. I’ve spent so long being angry at St. Paul for pegging me as less than perfect, I’ve missed the rest of the story.

Every time I hear those verses from Corinthians, I crumble a little around the edges. I can’t love people like that.

What has come to me, softly, gently, is that God is describing Her feelings for me. God is telling me I can know everything, endure all hardship, even move mountains, but it means nothing until I know in my heart and my head just how perfectly I am loved. Love is the key.

A friend of mine was photographed last year holding a sign saying simply “Love Wins.” When I saw those words, my heart expanded three sizes or more, just like the Grinch. (I’ve already confessed my commonalities with that mad, sad green creature.) Forgive me, deep thinkers and theologians. That’s my spiritual core in two words: Love wins.

If it’s human love, it will be flawed. No matter how desperately I might strive for it, I can never be anything other than human in this life. I hurt people; people hurt me. I can work to love myself better, I can try to be a more loving sister, daughter, friend, mother, but I will fail, at times spectacularly, just like everyone else.

But leaning into God’s love, I’m discovering a love that never fails. One which “…always protects, always trusts, always hopes, always perseveres.” At precisely the right time in my life, in the winter of 2016, I have shed a little more resentment, looked deeper into my fears, glimpsed, dimly, that which I have yearned for all my life. I am fully known, and perfectly loved. Love wins.

Buttery Feet

Wise Woman lore:

When you move to a new house, slather butter on all four paws of your cat. By the time she’s licked herself clean, she’s comfortable in her new environment and won’t wander back to the old house.

I don’t know where I picked up that bit of wisdom, and I certainly don’t know if it works for cats, but here’s how it works in my life:

As my energy level increases, and my anxiety level fluctuates, sitting still to meditate becomes problematic. (let’s not talk about the painful process of trying to quiet my bubbling brain).  A couple of years ago, when the concept of self-care began to sink in, I discovered the pleasure of massaging my own feet.

Then, a delightful tiny epiphany. If I massage my feet with shea butter, cocoa butter, or some such, I am stuck sitting cross-legged on my bed until my feet are not too greasy to walk on my old wooden floors. If I get up and try to walk around with buttery feet, it leaves ugly footprints and there’s the very real prospect of busting my butt.

Sufficient incentive to stay still. If I breathe deeply, I reward myself further with the intoxicating scent of cocoa or the sweet, cotton-candy fragrance of shea butter.

I cannot muscle my way into good meditation practices, good health, emotional sobriety, happiness, joy or serenity. When I am open to the loving whisper of a power greater than myself, I can smell, touch, see and live these gifts, miracles of the commonplace.

30A: A Love Story

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This is the cover photo for Good Grit’s first issue; 30A A Love Story is the cover story and I’m proud of it!

I’m honored to be a part of a new magazine of the South, called Good Grit. If you’re not familiar with it, please check it out in print, or online. Buy a subscription. It’s beautiful. The Harvest issue has just been published and it’s a keeper too.

 

By Karyn Zweifel

My mother was born near the geographic center of the continent, oldest child of a teacher and a mail carrier, about as distant from the sea as it is possible to be. Surrounded by waves of golden grain as far as the eye could see, she dreamed of the ocean, endless ripples of blue fringed with white. When she finally made it to the seashore at age 22, it was in reality a homecoming; “I knew when I saw it that that’s where I came from,” she says. “I just cried, it was so beautiful.” To this day she feels more connected to the universe at water’s edge than anywhere else on earth.

Continue reading 30A: A Love Story