“What’re we going to do tonight, Brain?”
“Same thing we always do, Pinky…try and take over the world!”
–Two lab rats from Warner Brothers’ “Animaniacs” circa 1995
When the cancer first began to make itself evident, I called it the “snakes in my belly.” At random, my gut would begin to rumble and roar, and I imagined I could feel the coils of my intestines slowly turn and twist. It was not painful, just kind of amusing, once I figured out the snakes weren’t usually followed by any other, more rude gastric events. The snakes are still with me, loud enough to be heard over a movie soundtrack in a surround-sound theatre, just today. But I kind of like snakes. They exude calm and warmth and an unmistakable physical presence.
The most obvious symptom of my pancreatic cancer (a rare type, slower-growing than its more notorious, ductal-type kin) was awful diarrhea. The uncontrollable kind, the kind of problem babies and old folks have. And I was lucky to have it. Yes, that’s right. Luckily, when the cancer cells left my pancreas, they drifted over to my liver, not my lungs or my brain or anywhere else. This type of pancreatic cancer is rarely found out in time for surgery or other treatment unless it goes to the liver and causes diarrhea and pain first. Thank you, Jesus? That verdict is still out.
Occasional sessions of raging, cramping, running-down-my-leg nastiness started coming weekly, then daily, leaving me weak and trembling and in tears. The worst spells were predictable, coming at four am like clockwork and often lasting for hours. During the day, more and more frequently over this two year stretch before my diagnosis, I would have unexpected attacks of diarrhea and I started feeling like I always, somehow, smelled like shit.
I started wearing diapers, a huge concession. It’s ridiculous, how much I let that crush my spirits. I imagined everyone could hear the sound of the paper diaper rustling and it got harder and harder to leave the house. I didn’t ignore my body while all this was going on. I went to my primary care doc-in-the-box, who referred me to a GI guy. I’d had my 50-year inaugural colonoscopy a year before and I scheduled another one, did the prep, showed up on time, followed the directions, listened to the doctor.
“Irritable bowel syndrome,” was the verdict. The GI guy had a most irritating habit of not looking me in the eye. Nothing inappropriate, I think he kept his eyes on his fingers or something. I can’t imagine a career of looking at people’s assholes. Maybe it’s hard to meet people’s eyes when their ass seems the better part. There’s really nothing to do about it, he told his hands. You just need to manage your anxiety.
I glibly assured him there is most certainly something I can do about it. I could, and would, double my daily meditation time. And I did. It probably saved my life. But it didn’t help the diarrhea. I did a couple of exclusion-type diets, to determine if I was inadvertently poisoning myself with Taco Bell or glutens or something. I tried more exercise, I took immodium, I yo-yo’d between diarrhea attacks and wicked constipation. I tried vegan eating. I ignored it. I binged on spinach; fried chicken; broth.
I was falling in love, and is there anything less conducive to love than liquid poo? I think not. Yet my love carried a diaper in his purse for me, bought me distractions, brought me warm rags, cold rags, expensive scented butt wipes. Endlessly assuring me of my beauty, my desirability, my not-stinkiness. Then and now, I sometimes lie awake at night and look at our hair, mingled on the pillow. Long dark ringlets streaked with silver, careless waves of gold and silver. It’s alchemy of the purest sort, this tangling of ours.
I got so good at ignoring that symptom – the diarrhea – that I also totally overlooked the next symptom to come along. The snakes began to bite. It started small, it must have, because I don’t really remember a particular onset. It’s like I woke up one day, about a year ago, and realized I’d been in pain for days without really registering it. It’s a low-level pain, about a one or a two on scale of one-to-ten. It’s kind of like period cramps, or the very beginning stages of labor, or early in an appendicitis attack. Sort of like a mighty hand taking all those snakes and giving a gentle squeeze. But of course after a couple of hours of that, the snakes start stirring. They don’t like being squeezed. So they start biting.
There were clues all along, of course. I can see it clear as day, now. One confounding characteristic of all my problems was a strict 12-hour clock. Moving from Atlanta to Birmingham as often as I do, I’m never really sure what time it is. But just as the diarrhea appeared at 4 am on the dime, the snakes start biting at 4 pm precisely. My current opioid habit* stifles the diarrhea nicely these days, but my eyes pop open in the pre-dawn five mornings out of seven, and my snakes are there, lazily roiling. If my internal clockwork is on Central Standard Time, the clock might say five am, but my gut knows better. It’s Snake Time. That kind of regularity must surely be a red flag.
I see in hindsight too that my eating and cooking habits took a crazy left turn two years ago. I used to love to cook and feed my friends and family. But I stopped enjoying cooking. Everything I cooked tasted a little off. Preparing a big meal left me too nauseated and tired to enjoy eating it. Raw vegetables sent me scurrying off to the bathroom almost instantly, and I had to be close to home after I ate just in case something struck me funny. I couldn’t tolerate funky or foreign smells and tastes anymore, and I mourn the loss of my iron stomach. I used to be able to tolerate Lucky Dogs from a street vendor, for God’s sake. Now I can’t look at the mold on cheese without sicking up a little.
I really was spending a decent chunk of my day in meditation and prayer by this time. My mom was recovering from a miraculous but grueling near-death experience, and I was charging headlong into a long-distance love affair. If the circumstances of my life were causing me to experience some mild discomfort (diarrhea and snakes), maybe that was just the price I had to pay? Maybe, whispered an insidious little voice, maybe we have to trade a little pain and anguish for all that sloppy, giggly fun, eh?
Thank you, Jesus, unequivocally: my love and my friends (my higher power with skin on), quickly come to reassure me that that is never so. My Higher Power does not extract a pound of pain as payment for every ounce of joy. Joy is mine, free for the taking, by the double-handful if I want. Suffering is not part of my Higher Power’s plan for me.
It was about a year ago that I began to look beyond the diagnosis of IBS-D (irritable bowel syndrome -diarrhea). I tried acupuncture; I finally went back to the GI doc, and saw his nurse practitioner. I liked her. She looked me in the eyes while I described my problems and told her I’d tried an illegal, herbal treatment for diarrhea that seemed to help a little. She looked away as she told me, reluctantly, that this doctor would never consider treating my problems with any kind of CBC oil, even if it were legal in my state. She ordered blood tests and wished me well.
Now the snakes were getting a little more fierce. It dawned on me, slowly, that they’d been eating into my sex life without my noticing. There’s just not a lot of room down there for extracurricular activity. And that’s a damn shame, because old people sex is just grand.
It was July when I had an attack of the shingles, simmering and basting slowly in the Birmingham heat, uncomfortable in the skin of my body and the confines of my mind.
Sometimes when I hate being myself, I use this little trick to slip my skin: I do something I absolutely do not want to do. It’s just to prove to myself that I can overcome myself. Overcome my self will. So I slid my fingers over the buttons of my landline and checked the voicemail for the first time in four months. I know that sounds awful. But the landline has been in my name for thirty years, and it’s got old voicemails from my kids, their high school friends. It’s the number the exterminator calls, the dentist still trying to track down my ex.
It’s a number I haven’t given out as my own for four years. I only keep the line to call my mother on it. Cell reception at my house, at the base of the hill where the cell towers live, sucks. It’s also the only telephone number my GI doctor’s office thought to call, when those blood tests came back. They may have had my cell number on my chart, but it was the landline they called when they discovered my pancreas wasn’t working right. They called it twice in May and that’s all.
I had a funny feeling when I heard the second message, listening in late July with a slash of shingles still livid across my side. It was the nurse practitioner. “You really need to schedule a cat scan,” she said. “There’s something wrong with your pancreas.” I didn’t skip a beat. I dialed that number right back and within a couple hours she called me back. On my cell. “Why did you wait so long to schedule the cat scan?” she wanted to know.
“You called the wrong telephone number with the test results,” I told her. “How soon can I have that CT scan?”
Now, I’m four months post-surgery. They removed two lesions (tumors?) from my pancreas, and the lymph node and a lesion on top of my pancreas. They took three more tumors off my liver and the surgeon confidently declared me cancer-free.
I still have the snakes, and they still bite. I still have diarrhea, and nausea, and now I vomit two to six times a week, probably because my poor pancreas was insulted and needs to heal. I have other pain, too, that I associate with my liver, on my right side and my right middle back.
Nobody tells me anymore that I’m not having any pain or that I’m not supposed to have any pain. I have opioids, in pretty small doses, that distract me from the pain. The side effects of fuzzy thinking and constipation are almost more trouble than the distraction warrants, but emotionally, I’m hugely dependent on those meds.
I’ve found CBD oil to be my most reliable friend in pain: it stimulates my appetite, destroys the nausea, lifts my mood, actually removes the pain (not just masking it like the oxycontin). I have other pain relief strategies: t’ai chi, meditation, prayer, conversation, stupid tv, challenging tv, board games, music, hot showers, meetings. I am back on my bike! My pain is of two kinds: the kind that chemicals can change, and the kind of heart-pain that comes with change. I am working on each kind of pain, the best way I can given my current state.
That heart-pain from change has two components: my own, and the pain I feel when I think about the pain my loved ones are experiencing. I can’t do much about either, but I’m at least trying to stop taking responsibility for the pain other people feel.
Both kinds of pain are real; do I have the courage, the wisdom, the desire to transmute it into something of value? What might that be?
When I took my CT scans to Emory in January, their radiologists spotted something the UAB docs did not. We’ve repeated those scans, and I’ll find out Thursday if the cancer has cropped up again or if the initial surgery missed something. I will update you as I am able.
*It’s a legal habit, thank God. I’m almost afraid to take them for fear of becoming addicted. I hear our president has proposed the death penalty as a cure for the opioid crisis. I wonder how that works?
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.”
“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
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.
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 noon, 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.
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.
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.