The Good, the Bad, and the Ugly-wugly Worthday

Tomorrow’s another birthday, likely to be spent in a state of moderate terror triggered by a single expression caught on the face of an ultrasound technician yesterday.

Normally, I like my birthday. It was always the last or second-last day of school, which meant it came with a built-in sense of joy and release for all participants but not quite too late in the year to secure an adequate number of guests for a party. As the possibility of partying became occluded with adult issues, like sick elders, kids’ graduations, or transitions like moving and traveling, I salvaged that day as Mine, All Mine–one day a year to spend as it pleases me and no one else. On the whole, people respond favorably to that claim–after all, who doesn’t need at least one day a year to please oneself?

Thus the past couple of dozen personal anniversaries have compensated for lack of festivity by being Splendidly Useful, days at whose ends I am once again on the right side of that adage, “The unexamined life is not worth living.” Along with a generous snort of a precious liqueur like Mangalore or Ginger of the Indies at the close of My Day, I take a deep breath of courage for the next year, grateful for another chance to become who I ought to be. The Dutch housekeeper in me is mollified once more. Birthdays have become worth-days.

The last day of my sixty-third year could be an ugly-wugly one. It could, for that matter, be the last one. There lies my life, waiting to be Examined by the ultrasound of my intuition, blinking back tears of dread as it senses the look on my face while I wield the new and improved version of that instrument.

Last year’s cancer tinkered with my intuition machinery, showing me many more layers of knowing than I had guessed existed in the human psyche. What a shock to realise that the organism already knows everything! You are your own Ouija Board–ask only the questions whose answers you can face.

Maybe I mis-read the expression on the face of that ultrasound technician. On the other hand, she didn’t respond to my question about whether she was looking at the pancreas (Pancreatic cancer, I gather, is almost as quick a final solution as a firing squad). And then she decided to “do” the kidneys.

Oh, scheize…. The kids start howling the minute she asks me to turn onto one side. The pain is only a faint echo of what they endured during their ugly time, the years of domestic terror when Rescue Remedy must never be out of reach. That unique pain would kick me in the back so hard, I’d have to pull over, administer the RR, and just wait and breathe until my vision was no longer red-limned and the ears no longer crackled like a forest fire.

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The Orgasmic Lightness of Being

A natural-health newsletter alerts me to the rise of cancer among pharmacists, nurses, and doctors who handle chimotherapy chemicals. Rick the Health Ranger says, "Treating cancer with chemotherapy is like treating alcoholism with vodka. It’s like treating heart disease with cheese, or like treating diabetes with high-fructose corn syrup. Cancer cannot be cured by the very thing that causes it.

"And to those who deal in poison, watch out for the cause-and-effect laws of biology. If you deal in chemotherapy chemicals, don’t be surprised if you get cancer one day. If you deal in chemical pesticides, don’t be surprised if you get Alzheimer’s. If you’re a dentist installing mercury fillings in the mouths of clients, don’t be surprised if one day you just go stark raving mad (because mercury causes insanity, and dentists breathe in mercury vapor thrown into the air from their drills).

"If you work around chemicals, they will eventually impact your health, and never in a good way."

I read that the leading cause of death in my province in the last year was cancer. The news does not cause so much as a ripple, because we knew. Not a single conversation, no controversy, because, at some level, we already knew.

Not surprisingly, when my lovely Polish surgeon told me I was cancer-free, I arose from my chair as if filled with hot air and bounced around the room like a balloon, clapping my paws for joy. Free! Free! No need to decide on chimo or radiation. Free!

Until next time. Until I let stress wreck the body once more. Until I fall prey to the easy ways of stemming hunger and thirst, loneliness and stress. Free.

I don’t know where to look, where to put my hands. I don’t feel the floor beneath my feet. I float away with a ridiculous smile on my face. Cancer-free…free to be, you and me….

Ironic, the loss of my iron man

Thirty-two years ago, I lost the love of my life, and my love lost his life, and all his loves.

It never stops aching. Not entirely. Every June 18, unless my living dear ones have crises that obtrude, I remember. Most years, I cry, again. Some years, I write another June 18 poem. I don’t talk about the date, lest it be thought an occasion. Let the stupid world think June 18 is just a boring day–I want it to myself, to remember the best man in my life.

He was a brave man, our Spence. He didn’t go to the hospital until 20 hours before his death. If you haven’t spent last days with a cancer patient, just believe me: that’s hard.

He had lied to all of us, his family, friends, and me. Especially me–he’d broken up with me inexplicably, just after we had decided to have a child. Still clad in the long cotton hippy dress I had worn for him that evening when he came to dinner with his dreadful verbal mission hidden in his throat, I lay on the river stones outside my shack, devastated, for two days. At some point I picked myself up, fed the wolfdogs, packed up into an old Ford Econoline van, and left for anywhere.

Two years later he came to visit me in Yukon, for no apparent reason. He still could not articulate why he broke us up. Lovely visit, but mysterious. I watched him stride away in the fresh northern morning, attache case banging against his knee, full of meaningless papers about the pipeline, geologist’s boots sticking out from under his suit with the leather elbows. The thought arose: "This is the last time I’ll ever see him."

He took a "business trip" to the Phillippines. I still have the tightly woven little bag he sent me as a memento from Baguio City. He was in the oil business, a geologist–so it all made some kind of sense. I had no idea he’d gone for the "psychic surgery" then so famous on the moccasin telegraph, later so infamous as the "cancers" allegedly removed from sufferors’ bodies were proven to match chicken flesh in every possible way.

Nobody knew Spence was sick until very close to the end. In those days, there were no early tests for colon cancer, and having cancer was, well, a little embarrassing. If you had cancer, you had probably done some bad living, bad loving, or wrong thinking in your life. You hid your cancer and prayed for survival.

Much later, I put it together. He’d been given a year or so to live, although he outlived the prognosis by two years. At one point, he’d been in the hospital for something–something he lied about, obviously–and of course I’d visited him there. I’d found him cheerfully piloting his wheelie-thing around the place so that he could continue his engineering-course homework in the brightest lighting in the building (other than the operating room). He was cheerful as only a faker can be, but I was naive enough to swallow his guff. "Why on earth are you taking more courses," I did protest, "when you already have a PhD and tons of post-doctorate work behind you, not to mention dealing with whatever this medical problem is?"

He said something about needing this course in the future and about life-long learning. I believed him. I wanted to believe him. I wanted to believe that Spence would always exist in my life, whether we were a couple or not. I needed an immortal good man.

Someone in his group of friends was a doctor, however, and the cat crawled out of the bag. On finding him out, we all flew into his eyrie in Calgary, totally pissed off with his bravado. There followed six weeks during which we all practised mundane courage, exemplified by Spence, who refused to stop living a single day earlier than he had to. Though he insisted on doing for himself far beyond the capacity of 999 of a thousand mortals, there was no denying that cancer is a sticky, icky, messy, stinky business. Like most major bodily events, cancer is all about fluids and odoriferous bits of gunk. The last course Spence "taught", to us there on the 34th floor of downtown Cowtown, was Transcendance Training, up close and personal.

Although too sick to drive, he walked into the hospital that last night under his own steam. I seem to remember the nurse taking his hand as he stepped up into the bed, his final bed, and he said, in an altered voice foreign to the voice of the bear I so loved, "It won’t be long now," and she answered gently, "No, Dr. Taylor, it won’t be long."

It wasn’t. The next afternoon, with his good friend his ex-wife and me, his last love, each holding one of those great hands, he left us.

Sort of. We could feel his presence above us, relieved to be free of the battered body. It followed us back to his office, where we held the prescribed wake with the long-saved flagon of scotch, and I threw myself down a set of stairs in a paroxysm of grief which had apparently had turned me into rubber, as not a single bone broke.

This year, as my initial "You’re kidding me" response to my own diagnosis ebbed away, the thought arose, Of course. Of course I’ve got the same disease.

This is nonsense, of course. Everybody and his dog have colon cancer nowadays, because we all grew up in poisoned environments. For some people, that started way back. Spence, child of the Depression, rode the rails, sailed the high seas during WWII on the ill-fated Lexington, and kept samples of radioactive rocks in his library, shining eerily in jars of oil or water.

I asked my docs how long the cancer thingy had been fashioning itself in me. Three to six years, I was told.

Three to six years…. Spence died at fifty-nine, which seems criminally young now. I was then a few days short of 30. Three decades later, at about his age, I was growing the same kind of cancer.

Now that’s not nonsense. That’s a warning to all us Boomers. This is the age it happens, people!

If Spence could know that in just six short months, his last love was diagnosed, treated with surgery, and declared cancer-free, he’d whoop with joy for me and wish like hell those opportunities had been open to him. Because he loved life, and he loved me, and everything could have been different.

Roads keep diverging in the yellow wood, and that is what makes all the difference.

Maddening

A full month after the surgery, the lab results arrived.

They were said to be due within two weeks. Good. That way, I thought, I can plan my summer. If the cancer is gone, maybe I can attend my friend’s wedding. If the cancer lurks and various docs think I need more treatment, well…at the least, it means a lot of self-education and some big lifestyle changes.

Once the results arrive, the patient doesn’t get them, of course. Oh, no. One must attend the doctor in his office. In my case, two doctors on two separate days. That is, after all, the only way doctors get paid–by seeing and treating patients. Our system doesn’t pay for talking to the patient over the phone.

Luckily, I’m in Powell River. In Vancouver, I used to rage over having to wait four months or more for my clients to see a specialist–it played havoc with trial dates and trial preparation. Little did personal-injury clients know that most of the delay in their cases was caused not by the legal system but by the medical. But here in a town of 20,000, my wait is only another week. Just too late to get a flight to that wedding, probably.

Maddening.

Wisdom Nugget

The acquisition of wisdom is seldom much fun. The happiness part comes later, once the pain subsides.

Take me, the woman stepping around town now with a smile wrapped twice around my face, ending with a knot behind my ear. I’m idiotically happy. Why? Because I’m still alive. Because surgery saved me for another day. Because I’m Canadian, which means I partake in what Americans call, in dread and loathing, “socialised medicine”. Because, if I still lived in the US, I’d be slowly dying now, too poor to save my life even if I knew how sick I was.

In theory, of course, I knew that our medical system, although not the world’s best compared to, say, that of France, is a far more harmonious interplay of needs and expertise than Americans’ addiction to what they think is “free enterprise” for doctors, researchers, and medical entrepreneurs, and “free choice” for patients—hah! Like anybody else, I watch Michael Moore.

In reality, there’s nothing like triple-whammy surgery, six days in the hospital, and six weeks of baby-steps recovery to bring home the truth: medicine is not politics, dear American friends—it’s a resource basic to life. In a world as polluted and harried as ours, every one of us is going to need a medical miracle sooner or later. Mine was sooner.

It may come as a surprise to read here an exhortation to anyone over fifty, or fat, dragged out, and hollow-eyed as I was, to visit a doctor and ask for the new colon-cancer screening. This experience has taught me—again—that health and harmony are synonymous. Think of your life in its time as a piece of music, where allopathic (Western) medicine plays the spectacular bits on one staff, and complementary medicine and healthy living come in with the obbligatos and the chords on other staffs.

From the editor of Immanence, some would no doubt expect staunch adherence to naturopathy, clean living, and food-is-medicine principles—perhaps even some distrust of the allopathic medical model. True enough, after years of being unable to afford any medical care whatsoever while living in the US, I’d fallen out of the habit of seeing an allopathic doctor with any regularity, figuring I knew best, anyway, and so far, so good. Hadn’t I beaten fibromyalgia and assorted ailments into submission with naturopathy and naturally good living? Surely, if I tried just a little harder and maybe worked a little less, I could lose those bags under my eyes and that stubborn belly?

The results of the screening stunned me. Me, a cancer patient? My self-image crumbled in twenty seconds. This body couldn’t be mine, surely? There must be a mistake! A mix-up!

I’d been harboring dumb beliefs like “I’m not the cancer type” and “I’ve built up a powerful immune system.” Wrong! I was sick. Looking back, I recognise that cancer has been going on for years, the signs so incremental that I could explain them away. Every time someone tells me how much better I look now, I realise afresh that, like a betrayed lover, at some level I was the first to know, but at the mundane level I was the last to find out.

Please, take this screening. Don’t let beliefs about yourself stand in your way. Don’t let the politics of medicine interfere with the best care for your body. And if there’s a new-fangled, non-invasive test for cancer or the other diseases that plague our society, get in line for it. Chances are, I’ll be in that line-up with you.

Is A Life So Small?

"Is a life so small?"

Lately, I hear that cry of anguish again, every day.

The heart-shaped face of my Hawaiian poet-friend, Susan Starr, arises from memory.

Eleven years ago, kay and I were struggling to fit in a visit every week or two to Susan’s little ohana perched on a hillock a third of the way up the sunny slopes of Maui’s dormant volcano, Haleakala, the "house of the sun". The rent was cheap, by Maui standards–a mere $500 per month, if memory serves. For the privilege of privacy, Susan, who could no longer hold down one of the scarce-enough social-service jobs on the island, was willing to pay almost her entire monthly stipend. The little building was furnished in lawn chairs and meditation pads–and a desk with a built-in easel, like a drafter’s desk, where Susan tried, almost every day, to produce a piece of art. There was less food than art supplies in the tiny house, and any little goodie we could bring along was welcome, provided it fell into the category of Stuff Susan Can Still Eat. The details have drifted away, but I recall that the provision of an adequate juicer posed a huge practical and financial issue. Life wasn’t easy within those four walls.

Yet Susan was one of the lucky ones.She had some medical coverage, and she received a small monthly stipend from somewhere. By contrast, had cancer happened to me as it did to her, starvation and exposure would have been my lot, for there was absolutely no coverage for the likes of me, and no social safety net, either. Once I had sold all my chattels and property, the only option would have been death on the beach. But those were the days I was confident I would never have to face cancer. I wasn’t the type. I kept my head down and worked like a dog as if, in the end, I would have earned a nice juicy bone and a comfy dog bed.

For several years Susan struggled along, through hoped-for remissions and dread relapses. Even as the cancer settled in her bones, she worked at rebuilding her life, using food as medicine and art as therapy and, she hoped, income. But income never materialised, art therapy accomplished no miracles, and all the good food in the world could not beat back the cancer.

The day she entered the hospital, never again to emerge alive, was an outrageously busy day for her friends. Such days always are hugely inconvenient, because of the nature of our overly busy lives. My daughter, our poet-friends, and I spelled one another on what promised to be a long, 24/7 watch. Throughout her last four days, Susan kept pronouncing poetry, till her last breath. Amazing stamina! Later, poet Kelly Arbour assembled these final articulations into a mystical poem (which unfortunately I do not have to hand).

Hospital care during this phase had great benefits. Susan’s pain was alleviated, while access by her friends was enhanced. All good. But nothing could mask the stark scene we stepped through, wooden as novice actors, as we accompanied her to her final ward.

The cancer had broken her neck. She lay in the bed, as able to speak, think, feel and create as ever–yet unable to move. This was her irreversible moment, the moment of no return. All hopes and dreams were to be dropped at the threshold of that hospital room.

Although it could not have happened, I remember her seizing my hand. I must have picked up her hand, which had no will of its own any more. Yet such was the force of her feeling as she spoke, that memory refuses to reconcile with fact. I feel the fierce grip of her thin fingers as if it happened. I see her face, framed in its curly abundance of graying hair, lying at an add angle, like that of a small animal, pathetically still at the side of the road after being struck by a car. I hear Susan cry out, "Oh, Eva, is a life so small?"

She was fifty-eight years old, still pretty, still productive. A good friend. A good person. And she wanted to know if this was all there was. She asked again, as if I of all people would have an answer, some comfort. "Is a life so small?"

I fought back tears, because the only answer in me was, "Yes." For Susan, as for most of us, life is that small. Far too small for the beings we believe at heart we truly are.

Ten days later, I was honored to act as the celebrant of Susan’s homespun funeral. Among the poets and artists who attended prowled a vulture or two, grumbling over the pathetic size and quality of her estate. So small a life, almost no material goods were left behind beyond some nice drawings and a pretty scarf or two. But she’d left that cry of dismay reverberating in the air she had occupied, and I never forgot it. As I face my own version of cancer, it is a gift to remember that if our capacities and potentials prove more than our flesh can handle, it’s wisest to forgive our bodies for failing us. Forgive, and be as nice as possible to the vehicle you live in, because mind and soul operate only by permission of the flesh.

Here are a couple of poems I wrote for Susan, who died Labor Day, 2000.

Stars

(for Susan Star, 1942-2000)

The tumor shakes me

as a dog unhinges rats

My neck then breaks my mind

into a hanging

flower of flesh

I float among my moments

feeling faintly ill

but my friends say this is normal,

this newfound skill to fly

I may swoop now from the calyx

of my last sun-shot morning

to the night-beds of fruits

fallen years ago;

may play the role of nemesis

dark-winged in my own,

my tiny, star-cupped garden

yet even winged, in wilderness,

in overgrown and fevered hours,

how shall I find her, that

poor naked girl lost in my jungle,

the red temple flower,

still stranded on some Wednesday

in my so little life?

Lose 7 Pounds in 30 Hours–Without Boring Exercise!

As soon as I’d clambered into the house, I waddled into the bathroom and weighed myself. Two pounds heavier than when I’d entered the hospital.

I put a tape measure around the belly That in itself took effort. Almost forty-eight inches. Wow!

Given the five or six cups of hospital food ingested in the past week, these statistics made no sense. What was going on? Was it the types of food? The lack of deep sleep? The constipating meds?

I took the meds anyway. What if the pain got worse? I slept seven or eight hours straight for the first time in a week The nurse did call, poor dear, around midnight, doubtless very glad to find that I’d kidnapped myself. I would have liked to apologise for fleeing on her shift, but was already in dreamland. I awoke so grateful for that sleep. And then the fun began.

It was a good thing I’d left the hospital. Had I stayed, the morning staff would have discovered me in a pool of nasty-smelling stuff from top and bottom orifices, somewhere between bed and sink.

At our hojme hospital, Kay had put my wonderful mattress atop our library guest bed, which is a hard, unaccommodating fold-out thing (probably designed to discourage long visits). Unlike the $26K hospital bed, it did not rise, but it was also a lot closer to the ground, which meant I could if need be sort of roll out of bed and fall onto the floor without damaging anything except my dignity–not that I had much of that stuff clinging to my unwieldy bod by this point. From the bed, I could peruse the spines of several thousand books. My head lay nearest the god-bothering books, floor to ceiling–very appropriate for the occasion, I thought. One look to the left brought back Rumi’s poems, Sogyal Rinpoche’s Tibetan Book of Living and Dying, A Pace of Grace by BC’s own Linda Papov, the lovely face of Peace Pilgrim striding along her path, and The Idiot’s Guide to the Bible. I could let my eyes bounce along the shelves, up at the classic and then the upstart philosophers, human thought in all its luxurious, even excessive, variety. Then education, another collection of upstarts, of whom I am one–or was, until this happened. Then, books on the wonders of the body–you don’t realise how much has been written about what we humans are and how we work until you get sick. Some titles were too apropos: Who Dies? What Survives? I figured I could answer the latter title in one word–sure as heck didn’t need a whole book to tell me death is a synonym for THE END. But the book spine that blinked at me like a neon sign was Life without Pain. Imagine: someone believed strongly enough in that possibility to put out a whole book on it. That’s where I was going–to a life without pain. But not quite yet, apparently.

The home hospital had safety features in addition to ambience and a strong nurse in Kay, who proved able to lift me almost painlessly from the bed until I could retrain my muscles. A clock with a second hand allowed me to keep tract of my own pulse. A beautiful glass with a steel straw in it offered me water from the nearest shelf. For a call button, we set a large steel bowl and the steel wok lid beside the bed–the only items sure to wake Kay in case of emergency. We coaxed one of our ancient thermometers back into working mode, but left the far more expensive blood-pressure reader in its lonely exile in the bathroom, as it invariable reads the BP some thirty points higher than Walmart does. Instead, a six-weeks-old gray kitten agreed to snuggle with me and lower my BP–what could be better than that?

That first day was hard. The action began as soon as I woke up and wouldn’t stop. There was plenty of exercise for both of us–just not the boring kind one does in a gym. Kay was kept running, lifting, cleaning, as the gastric experiences of an entire week decamped. Even water wouldn’t stay down, but a human being has to have water; so it was sip, sip, sip all day, just to stay hydrated. The body temperature began to rise and Kay threatened me with Emergency or even 911, but somehow, after twenty-four hours, we’d beaten it back.

Thirty hours after coming home, I weighed seven pounds less and measured four inches less around. I took my first shower, a plastic bag taped over the incision site. I felt incredibly clean, both in and out, ready to build up this body again. There is nothing like the face of death, I thought, to prepare you for living.

Borborygmi Theater

A left-behind stethoscope was our ticket into the Borborygmi Theater.

A nurse or doctor had momentarily forgotten the thing. With a conspiratorial glance, Kay and I began listening through it, the way kids play with a doctor kit. Fun’s hard to come by in a hospital room, after all, and I hadn’t had any fun for quite a while.

First I passed the stethoscope over the four quadrants of my burgeoninig belly, just as the nurse had, and then Kay had a listen.

Have you ever done this? Omigawd, as Mother would say. Rumbles like a truck. Squeaks, gurgles, skitters, bubbles. The occasional squeal or roar. How can anything be so loud and yet not audible all the way down the hall?

Horrifying. Humbling. At the same time, magical: if all this ickiness is operating properly, mind and soul can also operate.

Kay declined to try her own innards.

There is a word for this flesh symphony: boborygmi. It is derived from Greek, like all English words that look as if they need an h or two inserted in them. The origin seems obscure, but I would not be surprised if it were linked to the ancient Greek word for stranger: barbaros. That was the generic word for foreigners because the Greeks thought their speech all sounded like Bar-bar-bar-bar, and yes, English gets the word barbarian from it. (Apologies to all the Barbaras in the world: yes, one interpretation of your name’s meaning is "Lady Barbarian".)

I learned this wonderful word in a funny place–the annual medical Revue many years ago at U of Alberta. Onstage clumped four zombie-faced med students, dressed in scrubs–the Chorus. Then there came a silly song about abdominal matters that literally had us falling out of the seats, bent double with laughter. After every verse, the zombie chorus intoned in deep voices, "Borborygmi, borborygmi…." After all these years, I could still feel how my guts hurt from laughing that night.

My expanded belly could be thought of as Borborygmi Theater now. I’d been on my back five days–that was the stage, a rake stage, yet, slightly elevated upstage, where the pillows began. The omentum (a thing I didn’t even know I had until this month) fell like a curtain from stomach to the bottom of the abdomen. Stage Left, the colon began inching Upstage along the perimeter, before crossing to Upstage Right, sneaking along under the back wall of the diaphragm, only to inch down Stage Right to disappear in the orchestra pit. Overhead, the dome of my belly rose higher by the hour, which might, who knows, be adding to the acoustic values in the theater and deafen the holder of the stethoscope. And in the middle of the stage, meter after meter of small intestine writhed its way through the play of Peristalsis, whining and crying and wailing. Talk about overacting!

Peristalsis, the process of forcing whatever food falls into the stomach to take the lower exit leaving only nutrients behind, was not going well. There had been no production for some time–by Day 6, nothing impressive had happened for three days, while pain ran up and down the scales like a piano student who’d lost her mind, despite two kinds of painkiller which should have shut her up.

I thought, This is what happens when all you have is a bunch of directors and no Stage Manager. This production should have been blocked out as soon as we started rehearsals! Somebody should have thought about what was supposed to happen where, how, and when on the stage of Borborygmi Theater even before the surgery.

By the time the night nurse came on shift and brought me meds, I was miserable, without much hope of getting better. Couldn’t keep my mind on anything much beyond the horror story of my belly. I folded the three pills into their little white top hat and called Kay. "Come visit," I said, the visiting hours in ICU being 24/7.

I could hear she wasn’t enthused about another outing that time of night but she came, Scrabble game in hand. I motioned to her to close the doors; I hadn’t turned on a light.

"We’re leaving," I said, motioning to my packed bags. "You take those; I’ll follow in two minutes."

Kay protested. Only that morning she had insisted strenuously that I was anything but ready for home care.

I wasn’t getting any care anyway, I pointed out, beyond pills that were not working and the occasional taking of blood pressure.

"But don’t you have to be discharged?"

"It’s Saturday. No doctor to do it."

With a "My crazy mother" shrug, Kay picked up the bags and left. I peered down the hall for a minute or two. I was sorry to inflict my unseemly departure on this particular nurse, who was the one who had listened and then gone the extra mile to get me a substance called fruitlax, the apparently only useful solid to have slid down my throat for an entire week. But I also knew I couldn’t stay there any longer.

It was just after nine. No one had checked on me since seven. I walked across the hall, banging my shoulder on the door in my post-op clumsiness, but no one noticed. Out through emergency, where the car waited with a nervous Kay at the wheel. First fresh air in six days–delicious!

"Let’s go home," I said.

The Overnight Pariah

Take your journal to the hospital, and a couple of pens. You never know when its seems wisest to stay awake by scribbling your way through the dark.

I was becoming desperate for the four-hours-straight stretch of sleep that is essential to steering clear of fibromyalgia pain. I could sense it hovering out there, ready to pounce on some or all of my anatomy. So, I had soldiered on until 12:30 a.m., the time appointed for the nightly meds, in hopes of getting those precious hours for the first time since entering hospital three days earlier. What an effort! Pain is exhausting.

The new medication worried me. The nurses had more or less left the decision to take 2 or 4 micrograms of the stuff with me. But what did I know about Dilaudid? A morphine substitute. Okay, that tells a person who almost never downs so much as an aspirin, nothing. So far, all I knew was that 2 mcg. wasn’t doing much for pain. I was to have 4 mcg. plus Tylenol tonight, and I was desperate enough for sleep to try the full dose.

Exiting the bed without incurring high levels of pain wasn’t possible yet. Kay had visited late that night to help with the mundane nursing tasks of toilet, teeth, a fresh undersheet in the bed, ice water to sip from. Little did she know as she padded out the door at 12:25 that she herself would not get a long sleep.

Five minutes later the night nurse arrived and wordlessly handed me the little white top hat in which meds are served. No small talk from her tonight. I asked whether she had anything for the maddening itch in the middle of my back, where the epidural had sat for three days. She indicated no. I asked if perhaps the skin lotion I had noticed parked by the sink would be helpful, and, evidently put out, she plunked the container down on the bedside table. Two days earlier, she would have been solicitous, rubbing the stuff in herself or, more likely, detailing an LPN to do it. I wondered how she thought I would reach the spine with a thorax and abdomen as sore as mine, not to mention with my gimpy right arm, which still periodically roared about a previous injury.

A cool wind had blown from this nurse since she started her shift at seven. Maybe she realised I had by now heard her own tale of her more difficult left hemicolectomy–making her suffering greater than mine, you understand–about half a dozen times? Hardly. I had listened attentively and was quite prepared to tap her experience and wisdom on the topic. Wow! A caregiver who actually knew what patients like me go through! On my arrival, she couldn’t have been friendlier. We had some nice talks.

It must have been the dressing change the previous day that turned the tide. There had been a lot of blood collecting under the nifty transparent bandage over the hug incision. At first the nurse shrugged it off, but then returned to apply a fresh dressing, perhaps having received direction from someone. She put on a fresh dressing, but it didn’t seal at the bottom; so she patched it with what she called a "two-by-four", both of us laughing and joking the way well intentioned patients and their caregivers do sometimes.

Then I took my evening stroll around the ward and trailed blood all over the floor. Oops.

The next morning my surgeon changed the dressing himself. Guess what? No leaks. He seemed a little testy, sticking the date of his dressing onto my tummy above the incision, as if someone would need a reminder.

Tempest in a teapot, knot in the bandage, typhoon in the toilet…whatever. Maybe the nurse thought I had complained? It dawned on me that the LPNs were carrying the load of the many mundane duties involved in nursing. Maybe there were ways to be a good patient, and ways to be bad.

I pulled myself together, took the pills and bedded down. Come hither, Morpheus. It should have been a quiet night. Only two of the four ICU beds were occupied. Unless the world’s biggest accident occurred in our sleepy town, the nurse, accompanied by a male nurse and an LPN, should have very little to do.

One and a quarter hours later, I was jerked out of my darling sleep by a man’s voice loudly delivering what sounded like a punch line. Loud voices were having a good time down the hall. No going back to sleep with that going on. I decided the best solution would be a stealthy closure of the glass doors of my room.

I did it. Groggily I raised the bed and sort of fell out of it, slid the doors together, used the "facility" and with the aid of a little stool and some fancy legwork, re-entered the bed. Someone must have noticed the closing door, for the sounds did abate somewhat. Maybe I could pick up the threads of sleep?

I drowsed, but kept waking in a panic, trying to find my breath. I’d never breathed like this before. What was in that drug? If I fell asleep, could breathing stop?

I wasn’t hooked up to the monitor, I realised. It had been turned off. Since 12:30, no one but me had the slightest idea of this body’s vital signs.

It seemed a little overconfident not to monitor a patient who never takes so much as a tylenol but who was now on powerful narcotics new to her, three days after surgery. If that constituted over-reaction, I sure wished someone had told me what to expect.

I was scared to sleep. Again I forced the body out of the bed and, by dint of shoving my bag close to the cute little toilet with one foot and lowering myself to the throne, rummaged around for my EmWave. This palm-sized instrument tells the holder when the heart is "in coherence" and when it is merrrily jerking along as usual. You can control your cardiac system to a large extent with a breathing technique and a thought technique. This "Hearthmath" technique has saved lives in the past, and it sure wouldn’t do me any harm now. At least it would let me know something about what the heart is doing, since I couldn’t very well turn on the monitor again by myself.

I would call Kay as soon as decent to do so, and ask her to research this stuff, this Dilaudid, and to call the GP to make me part of her morning rounds, please. Maybe I could get moved upstairs.

It was minutes to five a.m. The next dose of tylenol was an hour late, although surely the staff, if they had noticed the closing of the doors, must have known I was awake. The next load of Dilaudid was half an hour late–mercifully. But no one came until I dropped the phone, when the LPN popped a head in–but no pills came with her.

The EmWave told me I was in blue or green zone ninety per cent of the time, which I sure the hell was not. I kept up with the measured breathing, sitting up in the dark until the dawn crept through the windows. Seven o’clock and change of shift couldn’t come soon enough.

Somehow I’d made enemies. Stage Two of recovery was not going well, but I could see no exit from this familiar game. I was supposed to accept whatever staff did, without question. No rocking the boat. If I did not react to their failure to provide painkillers on schedule by screaming for more narcotics and tylenol, however, I must be faking the pain. Bad Patient.

I became Badder. The day nurse came to lecture me on taking my pills and all I could come up with was, "After I talk with the doctor, I’ll decide." That was definitely not the right reply.

On my trundles through the back of the ward, I’d noticed a poster about patient autonomy, specifically for seniors. It was a pretty impressive piece of work (although once could still see, under the tape, the title ABUSE, which was the situation the protocol had evidently originally been developed for). Hey, there’s been training going on. That’s great. Fifteen years ago, during my last big involvement with the medical community, such training had been scarce. Patient autonomy was a big topic in the new, burgeoning field of medical ethics.It was good to see the discussion migrating to all care facilities.

In those days, the concept of Patient-Centered Therapy or the Patient-Centered Approach, meaning the patient retains the authority to hire and fire members of one’s team of caregivers,was blisteringly new even in the US. I liked the idea. Obviously it patients were respected as the heads of their teams, as they were, presumably, still the owners of their bodies, they would be more knowledgeable and therefore more compliant, not less. More compliant patients, as everyone knows, result in better medical outcomes.

I’d had similar thoughts about legal clients. If only our clients understood what we lawyers were trying to accomplish, I thought, wouldn’t they shoot themselves in the foot less often? Wouldn’t that result in a reduction in the number of trials? Well, that’s another story, It’ll be a cold day in hell before most lawyers turn the fiction of "taking instructions" from a client into reality.

I was about to make the mistake of thinking the concept of patient autonomy had grown vigorous enough to be of help in fixing little problems like my medication and care.

Shortly before eight Kay, the GP, the day nurse, and my surgeon’s partner (the surgeon had left town for ten days) were gathered at the bed. I ewxplained my fear of the Dilaudid unless I was hooked up to the monitor, as the stuff was new to me. I also asked my GP if I could have some continuance to physiotherapy with the right shoulder, to help me get out of bed by myself. There seemed a satisfactory solution: there would be physio, there would be morphine, which I’d had before, and tylenol, and I would be moved upstairs.

As my surgeon’s partner moved down the hall with the day nurse, Kay and I heard her say, "Did you know the patient refused her narcotics?"

At that point a truly patient-centered approach would have dictated a return to the patient to clear up the dissonance in communication. That didn’t happen. As the weary day stretched on, neither did the morphine, the monitor, the physio, or the move upstairs.

Next morning, the same cast re-assembled at the same bed over a patient in more pain and distress after 24 hours of ibuprofen and tylenol. Could I please go home? they said. Wasn’t I ready?

I thought Kay would explode. I couldn’t sit up by myself yet, let alone get out of bed or do anything much besides read by myself. And our home was hardly fitted to be a hospital.

Again, the decisions to move me, to send a physio. Neither happened. Every several hours someone came to take blood pressure, which soared and dipped with the vagaries of pain.

The day nurse arrived for that duty about five to take blood pressure and administer an informative lecture on the subjectivity of pain. She looked to be in her twenties. I’m in my sixties. I wondered what she thought I didn’t know about pain, especially since my master’s thesis had dealt with the subject in some detail and I have forgotten more about dolorimeters than most folks, medical or not, will ever know. But hey, she was trying. And, I reflected, ICU doesn’t often have to deal with patient-autonomy issues, because people in crisis or in surgery have already given up a great deal of that autonomy for the sake of having their lives saved. Otherwise, the system wouldn’t work, and there is much to be grateful for in the way our society responds to medical crisis.. Heaven knew, I wouldn’t have survived this far without at least three life-saving surgeries. So I just shut up and practised friendliness.

She was interrupted before she could write down the BP and scurried away, saying she’d be back in five. As the end of her shift approached without her return, it occurred to me it might be a kindness to remind her. I pressed the call button.

An LPN entered, the one who never introduced herself or smiled. She deprogrammed the call button. "Why?" I asked as she cut my last communication with the desk.

"Because you don’t need it," she snapped.

She might as well have said, Because you’re a faker. Don’t call us; we’ll call you."

Fools of the Gods

The first breakfast that arrived at my hospital bedside astonished me.

In one corner of the large tray sat a big cup of a dark brown liquid probably meant to be coffee, topped with a plastic cap to prevent spillage. Next to it sat a "milker", which is not a miniature Swiss miss leaning her forehead against a contented cow while pulling the teats, but another piece of plastic containing high-fat milk. Then a white-sugar baggie. Next to that, another plastic, mass-produced milk container with white stuff I haven’t drunk for years, since I learned about all the messing around with hormones and chemicals in the so called dairy industry. Across the tray leftwards stood a small plasticised-cardboard tub of ice cream, its contents, including chemicals and carcinogens, neatly printed on its cover in a font designed for ants. Finally, the piece de resistance: a large, unadorned brick of dark green jello.

Have you ever read the contents on a jello box? (Bring your extra-strength reading glasses if you’re new to the fine art of ingredient-watching.)

Good morning, Cancer Patient! Want to have another go?

Every meal arrived on trays with niches for cups, bowls, and plates, make of a durable brown plastic, the kind that will not betray the iniquity of a lazy dishwasher and assures us that it will probably last about 10,000 years beyond the last human. The double-walled bowls and cups were made of the same stuff, and although the plates were ceramic, they came covered with lids of the stuff. I began to wonder whether anyone connected to the hospital had studied the effects of all that plastic on hot food. Were the lids dripping minute particles of themselves into the coffee, tea, soup and entrees? What about those liquids spending half an hour in their stay-warm containers?

Buon Appetito, Cancer Patient! Helping you restore your levels of carcinogenic intake!

Good thing, I had no appetite. For someone whose theory is that we’re getting cancer in droves because the world is full of carcinogens which we can’t help but ingest, the presentation of such a breakfast makes it plain that the gods are laughing at our frantic attempts to curb the results of our own excesses.

A cynic could consider cancer a natural form of population control. Only problem is, it’s non-selective. I may agree with the principle that we should curb our population, but when it comes to being one of those culled by cancer, I blurt, "Oh, but I didn’t mean me!"

Those first breakfasts returned intact to the kitchen. Later I saw that "return to the kitchen" did not actually happen: all uneaten food was scraped off into a large bucket. In six days, my presence contributed a lot to that bucket.

The same headliners appeared daily, only varying the dark brown liquid with a harsh-smelling black tea which seemed likely to have been brewed from the cheapest possible bags,made from floor scrapings. Only the jello bricks transformed themselves into, of all things, chocolate cake. If you’ve ever had a belly incision, you’ll remember viewing toast, croutons, and cake-y things with distrust, lest they make you cough. All three arrived in those first five post-op days, along with roast potatoes that, according to my visitor, tasted like playdough, cheese-fried steak, half-cooked tasteless spinach, spicy navy-bean soup, raw salad, uncooked prunes, and packaged waffles, among other things.

Huh? Red meat is supposedly one of the bad guys in instigating colon cancer. I’ve read research results indicate that dairy is one of the best media for growing cancers.And if you google post-hemicolectomy diet (which I foolishly did not do before entering hospital), you see that raw foods and fruit are to be avoided after surgery, along with anything that might move with difficulty through your highly tender and swollen plumbing.

In six days I swallowed perhaps five to six cups of food, including some tasty cream soups, cream of wheat, and most of a quite delicious chicken dinner. It’s not that the kitchen can’t cook, not at all. It’s that there appears to be no intelligent connection between the kitchen and the hospital at large.

Obviously the great edifice of cancer expertise would not exist without patients–but must I get cancer again? Isn’t it okay to get well now?

What fools these mortals be!