Category Archives: Joy

At the table: I’ll have a double handful right now, please

My dear son Kai returned to Montreal Sunday. I am so grateful he had a chance to spend two and a half days in Atlanta with me, a whirlwind of three doctors at two different Emory campuses. I made macaroni and cheese while he was here, (added bacon and subbed a little soy milk), and because the avocados were so pretty, I picked some up too. Thanks to the inspired presence of Michael and Kai, the guacamole got chopped bacon added as well.*

A friend took me to the grocery store Friday morning. There’s a sentiment too often inscribed on wine glasses and aprons these days, but during WWII, steely-eyed Londoners reminded each other to “keep calm and carry on.” I suspect it’s a cultural thing, perhaps a gender thing, but “carrying on” has always led me straight to thoughts of my belly. No matter what happens, we all have to eat, right? So, although I could not rationalize it one single bit, it felt okay for me to be in the grocery store Friday morning with my life in slo-mo shatter all around me.

I found the okra but they had black spots. “Do you have any fresh?” My friend who carried me to the market is a mind-reader. The produce manager smiled at her and returned in short order with a bin of okra pods, green as God intended. As I sorted, I remembered to breathe. I was looking for the short, tender pieces. The new ones, more fuzzy than spiny. I focused, sorted, breathed. I began to see how I might carry on.

I had my 90-day check-up last week, and here’s the bad news:  five new lesions on both lobes of my poor old liver. Here’s the good news: I’ll be starting hormone shots soon, and these may shrink or slow the tumor growth, alleviate some of the nasty GI symptoms, and also act as markers for targeted radiation therapy

I remembered all the times I’ve picked okra. My daddy used to grow a little bit in the backyard, when I was little and we lived in Kansas. He showed me how to pick the tender pods before the spines got mean. He taught me how to make snapdragons yawn and he teased my mom about her fierce loyalty to Jiffy corn bread mix for breading okra. But he kept a box of Jiffy mix in his cabinet for the rest of his life.

This put a smile on my face: remembering all the many, many times I have splashed that sunny yellow Jiffy mix, oil and beaten eggs across all the many stoves I’ve owned. The innumerable skillets full of the most delicious, tender, crispy, sweet, salty sliced joy from the garden that I have proudly presented to a tableful of guests, guarded at the kitchen counter, jealously hoarded for a latecomer. The buckets of sweat that have poured down my face while ceiling fans and floor fans roared and percolated the sultry Alabama air.

“Look.” My friend had found the discount rack. “This is the best risotto ever and it’s only a dollar.”

I wouldn’t bite. “It’s out of date.” I went back to fondling fuzzy baby okra pods.

“No, it’s not. Have you ever had homemade risotto?” Well, no, I haven’t. Or rather, I hadn’t up until then. She convinced me. I bought it. A pound of fat, unsullied white mushrooms, selected slow. And a pair of strawberry cartons on the fly on the way out the door.

I wanted to cook the risotto first, since I’d never tried it before. You have to stir the stuff nonstop. Thankfully I had enough clout to press Kai and Michael into service. It was good. But the okra? It was heavenly. It was love-on-a-fork. It sang to me of my mother, my children, my past. I was tired and didn’t make it as carefully as I might have but Kai knows his part.

“Best okra ever.”

We finished up the odd meal with lots and lots of strawberries and canned whipped cream and those perpetually stale dessert cups. Nectar of the gods, I tell you.

This thing we humans do, this preparing and sharing of food. It has such power in it. My friend Ellen Beaumont Ballard, my friend Margery Thomson, my friends Phyllis and Anne and Melanie, Bridget and Carole and Tommy, all my parish family who have scraped little bits of orange cheese on celery sticks, dumped a box of crackers on a plate, put another pot of coffee on. We know that power. My entire life, the go-to response to strong emotion is food.

I was at a memorial service recently, for a man deeply loved by his colleagues, students, and family. We spent the weekend together at Bald Rock Lodge on Cheaha Mountain. An army of people, from age ten to ninety, kept food and coffee and sodas and snacks piled high on tables stretching the length of the room. Waves of people came in and out, migrated to the patio, down to the motel pool, out to the lawn. They laughed and loved and remembered their friend. I watched, mostly. And although I didn’t know Dr. Olander or his family, I was nourished. In fact, when we left, I was flourishing. Renewed and reinvigorated.

Lucky me, I got to go to a wedding in early June, too. We sat under the summer trees near the Platte River, long rows of picnic tables, and ate pie and danced, celebrated love and family ties, and those tables, too, were overflowing with something, some power greater than mere calories, physical sustenance. All these long, laden tables I have been invited to, stumbled over, contributed to the bounty or not, they sustain me now.

I had my 90-day cancer check-up last week, and here’s the bad news: CT scans show five new lesions on both lobes of my poor old liver. Too much for surgery. Here’s the good news: I’ll be starting hormone shots soon, and these may shrink or slow the tumor growth, alleviate some of the nasty GI symptoms, and they’ll also act as markers for targeted radiation therapy if that becomes an option. My original prognosis, a 20% chance of surviving five or more years, hasn’t changed. I like my Emory docs; from what I can tell from my research they’re near the top in treatment of pancreatic neuroendocrine cancer.

If you know me well, you know I’m the most gullible person alive. I believed in jackelopes till I was thirty (what, my dad would mislead me on that??). I’ll spot fairies and djinn and angels at the drop of a pin. I prefer this world with a dusting of magic. Perhaps because I want to see it, I do. Even so, I have company in my capacity to believe. Any number of my cousins would swear to the presence of the Holy Spirit at sweet Olivia’s wedding in Omaha. Great clouds of angelic white moths swarmed the memorial celebration at Cheaha. Discouraged, aching hearts are renewed and encouraged and restored over and over, and simple kindness blooms underfoot in all directions. Beautiful things that should not happen, do.

Maybe it was just luck that allowed Kai’s schedule to fit in a trip to Atlanta. I think my Higher Power knew I needed my son to be with me and Michael when we got that news, and then to meet my great psychiatrist at the Winship Cancer Center, and my incredibly compassionate pain management doctor. I’m so very glad I could fry okra for Kai, and spread a tableful of love, nevermind that we ate off plates in our laps in front of the tv.

As a Christian, the Table with the deepest significance for me is the altar where I gather with my brothers and sisters to feast on Christ’s sacrificial love. One of my favorite preachers described that table once as extending, somehow, from my beloved parish home Saint Andrews, to heaven, through time and space, filled end-to-end with all whom we have ever loved and lost and all those who are to come.

That Table, now. It is in my heart. And so, dear friends, are you. I often don’t feel like eating at all these days, but whatever you’re serving up that can’t be tasted or seen yet warms the heart? I’ll have a double handful, please. Right now.

Will you tell me about a time when you’ve found more than food at a table full of folks? Or if you don’t feel like writing it down, just take a moment and remember what it feels like. We’ll make the world a little more beautiful, one thought at a time.

*My most recent favorite t-shirt slogan: “Because of bacon, I know Jesus loves me.”

 

What’s a good read worth?                 

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.




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.

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