Category Archives: fear

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.

It’s Simple, But Don’t Let Anybody Tell You It’s Easy.

 

Have you ever heard the piebird sing?

“Until and unless there is a person, situation, event, idea, conflict, or relationship that you cannot ‘manage,’ you will never find the True Manager. So God makes sure that several things will come your way that you cannot manage on your own.”

–Richard Rohr, Breathing Under Water

The bestseller Breathing Under Water was republished in 2011. A companion journal will be published in late July, with reflections, discussion questions, and room for notes as readers explore the idea that we are all addicted to something
The bestseller Breathing Under Water was republished in 2011. A companion journal will be published in late July, with reflections, discussion questions, and room for notes as readers explore the idea that we are all addicted to something

These simple words are likely to strike a chord of recognition in almost every human being. Rohr, known world-wide for his focus on transformational and mystical traditions, has written more than twenty books about spirituality, recovery and relationships, and his writing style is straightforward and concrete.

Continue reading It’s Simple, But Don’t Let Anybody Tell You It’s Easy.

Sugar stealing biker midgets and other hazards.

IMG_1776

(From Pizza Pie Chronicles, Pavo Magazine, 2010)

Okay, I’m a middle aged white woman. I look like somebody’s mother because I AM somebody’s mother. I don’t look the least bit mean or intimidating. Friends and even complete strangers (delivery customers) worry about my safety. Justifiably so, it seems. When we were trained, the manager assured us casually we’d be robbed sooner or later.

But I am a sensible person. It’s hard to rob a person in a moving vehicle. I trust my instincts and believe me, if I think it’s not safe to get out of my car, I won’t. Some nights have spooky moments. My phone loses reception in all the worst places. One street started off okay, nice little ranch-style houses, a streetlight or two. But before the numbers counted down to my appointed destination, the road petered out into gravel. The last streetlight was busted. My headlights illuminated further down the road, where the gravel ended and the red clay rutted track led uphill and out of sight.

Next to me was an old one-story house, with boarded up windows, sitting crooked on the lot like it’d been dropped there by an absent-minded giant. Oh, the rest of that road looked so dark. You know in scary movies where the audience shouts “Don’t go down to the basement! DON’T OPEN THAT DOOR!” — I had those kind of vibes. And unlike the pretty young heroine in the movies, I paid attention to those vibes and whipped my little car around and headed back to the store.

The map for delivery drivers posted on the wall of the store has great swathes marked off in bold black: “NDAD”. It didn’t take long to figure out that meant “no delivery after dark.” I drink lots of caffeine and stay alert.

Of course some (or most) of the fear for my safety is based on the race thing, whether people are willing to admit it or not. So it’s ironic that my first brush with trouble would happen in the nice mostly white suburb on the fringes of our delivery area. I was delivering to a business, with the word “shop” in its name. I got there and across the street I saw what was clearly a biker bar. This shop, then, must be where those leather-clad hooligans got their bikes tuned up and decked out.

The owner of the shop saw me headed in with a load of pizzas and wings, and graciously held the door open for me. With a bad feeling in my gut, I saw the repair shop had a pool table. And a bar. And it smelled like liquor, and it was cloudy with cigarette smoke. I set the food down on the bar and turned around to get paid. A man in black leather came towards me waving a fifty. He was a little the worse for drink. I later heard this place has a rep for pretty good home brew. He actually looked like he was about to fall down.

He handed me money and I said politely (as I’d been trained) drivers weren’t allowed to take fifty dollar bills. He waved the money again and said I’d better take it, the extra $10 was my tip. So I took it and turned to leave, holding the now empty thermal bag. Really bad vibes practically turned the air purple. “Hey,” the drunk biker said. “I want that bag to keep my beer in.” His buddies stopped playing pool to watch a more entertaining game.

“I’m sorry, sir, I can’t sell it to you.” I know I sounded prim. I wanted to sound like a Sunday school teacher. I was clawing behind my back for the door knob. He interrupted me. “Sell me your hat. I want your hat.” His buddies laughed. This was fun.

“You can buy one at the store, sir,” firmly, a “don’t bully your classmates” tone. I turned and put my hand on the door handle.

“But I want some sugar. What if I stole it?” From behind, he reached up and put his forearm across my throat. A classic choke hold. But notice I said, “reached up.” He was short. I mean, really short, like five or six inches shorter than I am. It was kind of like a five-year-old in black leather and whiskers taking on a tenth-grader.

In the weeks that followed, I have thought of so many ways I WISH I’d responded. People have (of course) told me how I should have reacted. If I’d only bent my leg at the knee and raised my foot up sharply, there would’ve been a connection. I could have screamed and then extorted money from all the biker dudes. I probably could’ve copied some lame karate move from a spy movie and thrown him. That would have been real entertaining.

But I did none of these. I twisted loose and jumped in my car and drove away as fast as I could. I stayed mad a couple days, until I told the story to some friends. One of them positively howled. “Sugar stealing midget bikers!” I told him I was stealing that. And I can’t wait to go back. I know what to do now.