Category Archives: fear

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?                 

I’ll Sleep When I’m Dead

what price, facing the wreckage of my past…

After becoming a mother in my late twenties, I zealously guarded my sleep privileges. When my children were older, I heard several variations of this thought: why waste time sleeping when there was so much living to get to? I was deeply offended. Sleeping late, long, luxuriously, was my reward for hard work and stress and parenting.

Several years before my cancer diagnosis (although the cancer was already hard at work in its own indolent way), I began having terrifying episodes of insomnia. They seemed to be connected to the heart trouble I developed in 2006. I would wake up in the wee hours with immobilizing chest pains. I slept alone; Doug and I were separated for years before he actually moved out of the house. So the pain would wake me and I would begin a vigil of fear and shame.

These days, I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should.

The fear was that I was actually dying of a heart attack. I have a very mild case of congestive heart failure and a very active imagination. The pain was transfixing – literally pinning me into the bed while I struggled to breathe and slow my heart rate. The shame remains more difficult to speak about. But isn’t that the bondage of shame, anyway? The inability to speak it aloud?

I was ashamed that I would be found out as a fraud. That I was not really sick, that I had somehow manufactured the experience of pain. I was deeply ashamed that somehow, my mind had tricked my body into feeling symptoms. I felt shame that I might be, however inadvertently, taking more than my fair share of attention, of medical care, of health insurance benefits. I felt such deep shame I even made up a little rule for myself: no more than one ER visit per year for chest pain.

Seeing my marvelous cardiologist every 9-12 months, as she recommended, we spent a lot of time talking about those chest pains and my fears. She ordered tests, changed up my meds. But the chest pains kept recurring, and I kept spending those wee hours of the morning, two or three times a month, in a fug of shame and pain. Insomnia plus a crippling fear of impending death plus shame is a potent and no doubt toxic mix.

Along with the initial cancer diagnosis in August 2017, I was told I have ulcers. In the flurry of consternation about pancreatic cancer, somebody prescribed me the generic equivalent of the little purple pill, and I’m happy to report I have had not a single episode of that particular insomnia since. I also learned that if you think you’re having a heart attack, you can get up and move around. If the pain lessens or changes, it’s probably not your heart.

Since the diagnosis of metastatic neuroendocrine cancer was confirmed in January, I have been experiencing several new kinds of insomnia. Unfortunately, most of them are related to pain. There’s the snakes in my belly that were the early harbinger of the cancer. There’s a pain in my upper back that I really think is my poor old liver quivering from repeated insult.

There’s an ache in my heart that sometimes flips into rage when my powerlessness crosses the threshold of my awareness. The post-surgical hernia, despite my best efforts, has grown as big as my left tit and is quite a bit more firm. It hurts if I do too much. These past few weeks I’ve had a constant headache and feel like throwing up most of the time, and all of these aches and pains are amplified after midnight.

So I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should. But the idea that sleep is something I’m entitled to doesn’t hold water anymore. I’ve had an important revelation:

I really was sick, all those nights I thought I was dying. In spite of my first-class health insurance, in spite of my faithful adherence to Western medicine, its skewed values and narrow perspectives, in spite of a fine education and my white skin and my privilege and my clenched-teeth determination to wrest what I want out of life, that system missed a simple case of ulcers, then misdiagnosed cancer as an emotional problem. Complicated my recovery with poor post-surgical care and then, again, misdirected my pain and channelled my shame to work against me.

My pain is real and my shame is unnecessary. In fact, millions of women just like me, throughout history, suppress their pain, or report their pain and are ignored, minimized, shamed for listening to their bodies and reaching out for help and health. So it’s okay to stay awake during these wee hours. Maybe even necessary. Because there is somebody else out there, struggling with pain and shame and fear. I’ll sleep when I’m dead. Tonight, I’m with you.

Good Book Upstairs, Big Book Downstairs

The tension between writing what interests me and writing what makes money has been a constant in my career. I’m delighted to report that my decision to write about recovery has resulted in my first publication in a national, glossy print magazine. Thanks be to God!

I picked out the photos, too. (Boasting now)

Take a look, I’m proud of it:

upstairs-downtstairs

Stinky and the Pain

“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?

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.

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(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.