Stories

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The first story begins…

WTF?

The following are excerpts from the written story of what happened in July 2019.

Foreword

“Oh no. Not another book about someone’s cancer journey. Why?”

Me: “Because it’s there.”

“What?”

Me: “You remember the old story about the mountain climber who, when asked why he climbed mountains, replied, ‘Because they are there.’?”

“I can see where dealing with cancer could be compared to climbing a mountain.”

Me: “That’s true, but that’s not it. It’s the words. It’s because the words are there. Lately they have just been bubbling up like fresh water from a mountain spring. I’ve been collecting them and arranging them until I now have all these words on pieces of paper waiting to be used. If they are not put to good use then they are wasted and meaningless, just like empty gestures. Like the mountaineer, it’s something I am compelled to do. It’s not all gloom and doom or gruesome tales of the ravages of chemo and radiation, there’s some humor in here as well. You might find some of the ideas inspiring and uplifting. Go on, give it go. What have you got to lose?”

First, a little background.

Recently, I was talking with some fellow cancer survivors and we were commenting on how the cancer, its appearance in our lives, seemed to simplify things in our minds. Being the rude one, I claimed that it cut out the B.S. The more genteel of the group said it cut out the clutter. When your life suddenly becomes finite, when you are abruptly made aware of your mortality the trivial, the unimportant, the petty, instantly wither away from your consciousness. The clutter is cleared so that our lives can be lived simply, one day at a time. That, at least, is what I and a few friends have experienced. Others may have had different reactions to their situation. What follows is my personal account of those and these ongoing days as a cancer survivor. The ongoing exploration of life in all its phases.

Oneword

Those of you who know me, either well or otherwise, will know that my speech is often peppered with expletives. Yes, I like to swear. I am English and I grew up swearing. Never in front of my parents, I learned that the hard way. Which is also how I discovered it’s best not to swear at schoolteachers, doctors, clergy in general and officers of the law in particular. Depending on the social occasion, it is best not to swear in front of women at all. This is especially true in the United States where some men even will get mad at one for swearing in front of women. The question of women is a tricky one. I have known quite a few women who are quite at ease using just as many and varied expletives as I have been known to utter. They do it, not for effect like a rebellious teenager, but as natural as can be. Other women almost faint when they hear so much as a mild curse word.

It’s all so very confusing. Don’t swear at all would be the rule, if there were one, but being the rebellious son of an army colonial, I don’t do rules very well. Initially, I suppose, swearing was a form of rebellion not only against parental authority but also what was viewed as bourgeois hypocrisy. I distinctly remember several thought processes. Swearing was conceived as a way of identifying with the working class, although I later learned in my usual hard way, that many of the working class were just as prudish and intolerant as the middle and upper classes. Another desire, that still holds true today, is for authenticity in the sense of, if you want to use the word, use it. Why say “fiddle” or “fudge” or “frigging” when you want to say, “f***”? Everybody knows what you mean and that you are merely avoiding the word, so why not say it? Don’t avoid the issue with cute little euphemisms; be genuine, for f***’s sake.

So, here’s the warning, I use the “F” word in the following narrative. (The term, F-bomb, sounds so kindergarten, don’t you think?”) I think I use the “S” word too although in limited quantity. The words are not used to impress or shock the reader. I use the words because that is how I think and talk. I use those words in front of my wife and occasionally she uses them as well. At home and with friends, it is no big deal. The notorious words are not used throughout the whole story only in places where they occurred, like quotes, as thoughts or actual spoken words. If my usage of the words offends you, it is not my intension. It’s just the way I am.

Having got all that sorted let’s open the story in a traditional manner.

“Are you sitting comfortably? Then let us begin.”

“Once upon a time…”

(Chapter One)

Coming To

The void; black darkness; emptiness; unconsciousness; soundless; breathless; heart-beatless; senseless; nothingness.

Transitioning.

A gradually growing awareness of a dimly lit room.

Focusing.

Guys in white coats. Three, or was it four? Standing in a mini semi-circle, staring at me.

Doctors? Of the medical variety, hopefully.

I was propped up in a bed.

WTF?

“Don’t try to speak. There’s a bronchial tube inserted down your throat,” said a white-coated voice.

Huh?” I had no idea what that meant but I took them at their word and obeyed. What else could I do? I was at their mercy.

Then along came Mary, as the song went. Mary was beside me.

Someone said a I was in ICU in Greenville, SC.

WTF?  (Where the F***) is Greenville, SC?

I went to speak again.

Was told not to.

Gulp, gulp, gulp?

Mary shoved a clipboard with paper and pen at me. Passed would be a better word than shoved. I scribbled and I mean scribbled or scrawled the first thing that came to mind.

“I love you.”

I was propped up in a hospital bed with IV’s in both arms, on a ventilator with a tube down my throat and coming out of anesthesia. On the off chance that you’ve never been there, it’s awfully hard to write under those circumstance, especially without my glasses and with various tubes attached to my arms and hands like the strings of a puppet. Strange as it may seem, I wasn’t scared – confused but not scared. The TV, a flat screen, mounted high on the wall above the doctors’ heads was blaring out some incomprehensible stuff. It sounded like race cars, but what I could see of it, it looked like a cartoon of race cars in an unending video loop. It was driving me nuts, but I couldn’t say anything because of the effing tube in my throat.

It’s all still a blur so the sequencing may be wrong.

I wrote/asked Mary what day it was.

She told me.

WTF?

The last thing I remembered was sitting in the ER waiting room of Pardee Hospital in Hendersonville, NC. By my befuddled reckoning that had been four days ago. The good news was, I could reckon. The bad news was, my memory stopped in the ER on July 2nd, 2019 and didn’t start functioning again until they brought me round on Sunday, July 7th, 2019. That was 5 nights and 4 days of missing memory; roughly 107 hours that were a complete blank to me. More than just a pothole on life’s highway, but a huge fracture in the crust of my earth, a black hole in my personal cosmos. Maybe I exaggerate a little compared to people who have been in lengthy comas, but it is scary to learn that you have lost that many hours, or almost a whole work week of your life and never had any fun doing so. In all my drinking and drugging days that had never occurred, fortunately I was not a black-out drinker.

That feeling of the loss of those days and nights of memory is tantalizingly difficult to describe. If you have ever just blanked out or spaced out as we used to say, as when you might be exercising and in the middle of your routine your mind wanders off, thinking about some thing or some person. I’ve done it on stage, in the middle of a song on total autopilot. Suddenly, you snap back into the present and you don’t know how many reps you have done or even what set you are on or in or what verse you’re playing. That is the feeling, almost akin to dreaming of falling and suddenly waking up with a heart throbbing start. An attorney friend of mine tells of coming out of an alcohol induced blackout, standing in a court room in the middle of a court case that he was conducting. Reality comes crashing in and you are totally lost and alone in a room full of people.

And this is where we return to the WTF? state.

I think I was told that I had stage IV lung cancer.

“He doesn’t seem surprised,” I heard one voice say.

WTF? Where the F***’s the surprise? I’ve been a life-long smoker and I was coughing up blood. That much I remembered.

“It’s inoperable,” the doctor continued. “We had to insert a stent into your bronchial tube so that you could breathe. You are on a ventilator. Where did you get the black eye?”

What F***ing Black Eye?

And…

HTF? How the F*** would I know? (About the black eye).

No one passed me a mirror.

The TV was still blaring cartoon NASCAR. They told me they were going to remove the tube in my throat. For some reason it was posed as a question.

WTF?

As if I really had any say in the matter.

“Have at it,” I scrawled on Mary’s clipboard.

And they did have at it. The ventilator was turned off, oxygen attached to my nose and on the count of three, the tube removed.

Just like that.

Woosh and it was gone.

I was told not to start talking too much so I was doing a lot of thumb action for, “Yes, I’m Ok thank you.” So much so that the nurse remarked about my busy thumb.

The white coats departed leaving the nurse and Mary who stayed around for a while, but I was drifting in and out of consciousness, so she left.

Swirling worms of bright primary colors, endlessly coiling and writhing like serpents against a psychedelic background of abstract shapes like a giant, paisley patterned wall hanging. The kind they still sell in Pier One. No sound, glorious yet sinisterly silent, playing in an endless loop against the back of my eyelids. An hallucinogenic staged back projection played behind a rock band at the Filmore, San Francisco in 1969, except there was no music just the infernal noise of the animated race car loop.

Won’t somebody please turn that f***ing thing off?”

I was in that peculiar place, physically out of it but mentally aware of the scenes inside my mind.

I thought at the time that when I awoke the images would be impossible to describe. I was conscious of wanting to remember them so that I could, sometime in the future, reproduce them in a video with music. My memory flashed back to when my son Brendan was lying in his hospital bed in Madrid, Spain. He was paralyzed from the neck down as the result of a motorcycle accident. He kept talking incomprehensibly about people on the ceiling. I found out later it was the morphine talking which made me ask my nurse if I had been given morphine or heavy opioids because I knew those drugs could cause hallucinations.

“No,” was the curt reply accompanied by a strange look.

Damn, even when they would be justified, I’m not allowed to have some ‘good’ drugs,” thought the ever addictive me.

The dreams slowly subsided as the drugs wore off and I spent more time awake. The nurse was particularly friendly, attentive, and caring. Asking questions, she kept me talking and focused. I guess ICU nurses are trained to keep the patient talking and to be silently observing, checking for any unusual behavior. If I’d had my wits about me I could have had some fun by projecting different mental states. Fortunately, I was not mentally agile enough to think along those lines. Had I been, I might still be in the psyche ward in Greenville, SC leaving behind a very pissed off duo of the nurse and Mary.

(That’s an ATF – After the Fact – observation).

It was during these conversations that the now infamous “sex and drugs and rock ‘n’ roll” response came up.

My conversation with the nurse progressed in the usual manner.

“Where are you from?”

“England, originally; a long time ago.”

“What brought you here?”

Now, I find that to be a trick question. Trick because, the answer I give is dependent upon who is doing the asking. There is the formal and far longer answer, generally reserved for polite conversation, either with people I don’t know or those authoritarian figures such as police, doctors or even nurses.

There is the glib, Fab Four answer, “A 747.” Quite possibly intended to quickly stem this line of questioning.

Finally, we come my favorite response, the delivery of which also depends upon the audience. If I know the questioners and feel comfortable with them, the answer comes straight out. If, as was the case with the ICU nurse, I am a little unsure of what their reaction will be, I will preface the answer with a short proviso, delivered with a cheeky smile as if to say, “I know I’m being a little naughty, but I think you’re cool enough to understand.”

“What brought you here?”

“Sex and Drugs and Rock ‘n roll.”   

Followed by a pause, of the pregnant variety, to assess the reaction. On this occasion the nurse laughed and then almost blew me out of bed by saying, “The doctor was impressed by your honesty when he read that.”

WTF?

The doctor read that? Where did he read that? I don’t remember saying that to anyone up here (in the Carolinas).

“Er, where did the doctor read that?” I asked.

“It’s in your medical history,” replied the nurse. I wish I could remember her name.

WTF?

“What medical history?” I asked the nurse who by now was realizing that she might opened a can of worms.

“Oh, some old records from the past,” she said, brushing it off and either left the room or changed the subject. Did they somehow manage to get my medical records from the Mayo Clinic in Florida? I mentally flashed through all the doctors I’d seen there when I lived in Florida. There was not one to whom I would have made that statement.

As doped up and hazy as I was, I got the point that she was aware that she had made a mistake and was trying to cover for someone. Sensing her discomfort, I let the matter drop. I was both proud and a little concerned that my smart-ass, tongue-in-the-cheek comment about my life-style choices had made it into my medical records as cold, hard facts.

Mary helped me figure out the how a few days later.

By this time, I was pretty much wide awake. The drugs had worn off, but my left shoulder was causing me a lot of pain. I was going to write, “Was killing me,” but in the light of recent events, I now try to avoid that particular phrase. They wouldn’t give me anything stronger than Tylenol and I cursed my honesty for telling all medical people that I am in recovery.

A Change of Scenery

Hospitals, like airports are Limbo-land environments. A kind of physical purgatory where there’s a great deal going on all around you, but you are caught in a type of time warp of almost suspended animation just waiting for something to happen. In hospitals, patients, family and friends are required to wait in agitated ignorance until someone finally says something which you would probably need a medical dictionary to translate. Airports, in fact, have one up on hospitals because they do at least try to keep passengers, and those waiting for them, informed of delays and cancellations. They do this either via often indecipherable and ever updating monitors or by garbled and incomprehensible announcements over the public address system. At least they try.

Ragged from an uncomfortable and largely sleepless night I lay in bed and waited, watching the hustle and bustle about me. I was well attended to by the new nurse on duty who was equally as friendly and caring as the others but basically, I just lay there and waited for doctors and Mary. The doctors arrived first, three of them; an oncologist and two others. I thought the oncologist was rather stiff and formal reminiscent of a Mayo doctor, but the nurse had said, “he’s very good.”

Now, here’s another aside. I have noticed that if a nurse or indeed another doctor asks you who is treating you and you reply. “doctor …” whatever their name is. The person invariably responds in one of two ways. They say. “Oh, he,” or she “is good,” or “great,” or some such positive adjective. Or, ominously, they say nothing at all which leaves you wondering if they are considered as being somewhat less than “good”, so silence is the better form of valor. It can be quite disconcerting. Does that mean that the doctor or provider in question is not quite as competent as some others? That’s really reassuring. Or is it that the nurse doesn’t like working with him or her. I can live with that. Or he or she does not have a good ‘bedside manner’. I can live with that one as well.

The nurse-approved doctor reiterated what I’d been told the day before, that I had stage IV lung cancer, that it was inoperable and all they could basically do was treat it palliatively. Did I want to be treated here, in Greenville, SC or did I want to go home and receive treatments at the hospital in Hendersonville, NC?

“We can begin treatments here, straight away or they have a fairly good cancer center at Pardee hospital.” Pardee being the hospital in Hendersonville, NC

Did I detect a hint of condescension?

Then he paused.

WTF? An answer was expected. A decision had to be made. Oh f***.

I was still rather confused and very over-whelmed. Mary had not yet arrived to help make rational decisions. The way I was asked made it sound, to my befuddled brain, that I would stay in the hospital in Greenville, SC, therefore I replied that I would rather go home, thinking I didn’t want Mary to have to continue to make the daily commute and home would be far more comfortable, not to mention cheaper.

“Right,” said the doctor, “We’ll get you into a room on a ward and see about getting you discharged.” And out he went with his two other White Coats.

More waiting in Limbo-land ensued. Thankfully, Mary arrived and agreed with my decision to be treated in Hendersonville. Not much else happened that day just lying in bed, waiting and waiting and waiting to be transferred to a room on the cancer ward. The move didn’t take place until the evening when I was wheeled up to a lovely room where two nurses tag-teamed me and immediately inspected an undressed me from head to toe.

Was this a prison inspection? Will they hose me down next before marching me to a cell to a chorus of, “Fresh meat?”

No, it was just my over-active and slightly paranoid imagination. They were very thorough but gentle and I was quickly helped into a clean gown and tucked back into bed. It’s a good job my mind was a little fuzzy because I had no idea what was going on.

Why is it that the younger doctors and nurses seemed to be the same age as high school students?

The younger of the two nurses was the night duty nurse who was there until 7:00 am the next morning. I don’t know where they find these people or how they train them, but she was the most pleasant, friendly and caring nurse that I have met in a long time. I was totally impressed by all the staff at Greenville Memorial Hospital. I was never admitted to the hospital at Mayo Clinic in Jacksonville, FL so I only met the day, outpatient staff there who seemed, with a couple of notable exceptions,  over-worked, harried and none too friendly, some bordering on being downright rude. In retrospect, perhaps it was my uncertain prognosis, which is medical euphemism for possibly terminal, that prompted such caring from the nursing staff. I somehow doubt that was the sole reason and I know it wasn’t my sunny disposition, although I did have fun joking with a few of them.

Having learned that Mary and I were new to the area, the lovely night nurse, whose name I wish I could remember, gave me suggestions of places to visit once I was out of the hospital. One of them was a wonderful bakery in Flat Rock, a small community where Carl Sandburg used to live and which Mary and I did visit a month or so later.

Out of the Black





Whizbang

House prints across

An Oklahoma prairie.

One rusted oil derrick

Bows in silent remembrance

Of the past.

“Where did that come from?” you might ask.

“What has a no longer existent former oil-boom town in Oklahoma got to do with cancer in general or your circumstances in particular?”

I asked the same thing.

It just arose.

The cliché is, “Out of the blue.” But there was no “blue” in ICU, except perhaps the nurses’ scrubs, just the hospital off-white of machinery and semi-darkness.

What do you do when you’re lying sleepless for hours on end at night in a darkened ICU ward? The doctors are gone, and the nurses only check in occasionally because your condition is now deemed “stable”. I was lying there in unattended limbo-land, virtually restrained; my arms hooked up to IV’s, my ankles wrapped in cuffs that endlessly inflate and deflate to prevent blood clots forming but play hell with your legs if you suffer, as I do, from RLS. The bed even has a sensor which alerts the nurse should you try to get out of it without permission. I discovered this later when I was up in the ward, caught like a child sneaking downstairs on Christmas Eve.

I didn’t have my glasses, so the TV, which wasn’t a viable option for me, was out. That left me and my little old mind and numb as I was, my mind was still active. To parody a famous poem, the night mind has a thousand thoughts, some of them not so good and some pretty weird in a lingering, psychedelic way. That might give you an idea of how I endured the sleepless hours. Or a confractum of Bobby Vee’s song, the night has a thousand I’s; I could ’a, should ‘a, and would ‘a. Then out of the mental kaleidoscope pops this little gem. Why I was thinking of Whizbang, whose name I love, and the site of which Mary and I visited a few years ago, is completely beyond me. The machinations of the mind are puzzling and awe inspiring at the best of times; under stress, its behavior can be strange; under the influence of drugs (legally prescribed in this instance) the mind can take us down some very weird paths. There’s the age old excuse from someone of my generation; blame it on the drugs.

The poem was basically written in my head and I didn’t want to lose it or the idea. I had no pen with which to write, no paper to write upon and no glasses to see what the hell I was writing. Enter the quasi-hellish state of trying to memorize the words as they were written in my head. We’ve all read or heard of prisoners of war, locked in solitary confinement, repeatedly reciting poems, or passages of scripture or even family names to keep from going insane. This then became my task, to remember at all costs the lines of Whizbang. It wasn’t until thirty hours later, when my glasses had been handed back to me and I’d borrowed some paper and a pen from a visiting med-tech that I was able to scribble down the words.

The idea for another song/poem was born in that interminable and unsettled night, one that became a theme for my survival and recovery.

The following morning a cooked breakfast was served and if there was any doubt that I was in the South, it was removed with a large serving of grits on the plate.

More waiting.

Mary arrived with street clothes, glasses and teeth – Yeah!

More waiting.

Until I was finally released.

Mary drove us home along an unfamiliar road to me but one that was by now well known to her. I insisted we stop at a Dunkin Donuts for a hot chocolate and a donut, my comfort food. Nothing like junk food to restore a sense of normalcy to what had been a rather surreal couple of days.

2019

The Beginning that was Almost the End

On June 19th 2019 Mary and moved from Atlantic Beach, FL to Etowah, NC. The only people we knew here were the realtor, Steve, and his assistant, Debbie. Mary and I unloaded the 26 ft. U-Haul truck and then set about unloading the 16’ x 16’ POD which we did with some kind help from the aforementioned Debbie. After almost 2 weeks we were beginning to settle in and get things organized. It was a quiet neighborhood and Mary surprised me by saying that this was close to her dream home. I hadn’t heard that before from her. Things were going well until, on the night of July 2nd I started coughing up blood. Not just blood but small blood clots as well. Mary immediately whisked me off to the emergency room at Pardee Hospital (Hendersonville, NC). I vaguely remember sitting in the waiting room but that is it. The rest is a blank until July 7th. I have no recollection whatsoever.

I still don’t have a clear picture of what happened during those 5 nights and 4 days. Mary’s memory, hindered by her own trauma and concern for me, is patchy at best. Plus, she was away from the “action”, alone and out of sight in waiting rooms. What follows I have learned from the various doctors involved and of course lately, the comments from Paul the anesthetist.

Once I had been examined by a doctor I was admitted to the hospital. Mary confirms this but she is not the only one. When I first met with the oncologist, at Pardee Hospital in Hendersonville, NC, she said that she had been on call that night. The doctor on duty in the emergency room called her, “in the middle of the night,” and asked what to do with me.

“Does he have a primary care doctor?” she asked.

“No.” was the reply.

“Then admit him,” she advised, and they did. By this time, it was early the next morning and Mary was able to go home and grab a couple of hours of sleep before returning to the hospital. I don’t know what went on for the rest of that day, July 3rd. It must have been around this time that my infamous, “Sex, drugs and rock ‘n roll” statement was inserted into my medical record, to remain there for posterity. I have asked but received no answers as to when I gave that answer.

I claim mental impairment or diminished responsibility, your honor. I must have been sedated and thus off my guard because I would never give such a self-incriminating answer to anyone in authority and especially not to a doctor who may think I was still using drugs. My best guess is that a medical person was questioning me, as they do these days, about my medical and social history. The medical equivalent of a background check. Perhaps I was getting annoyed and wanted to get rid of them. Perhaps I was showing off. Either way, during the interview the person must have asked the fateful questions:

“Where are you from?” and “What brought you here?”

To the last I would have chirped out, “Sex and drugs and rock ‘n’ roll.” Accompanied with either a smile or a straight face. It is obvious to me now, but it never occurred to me then that that answer would go into my medical record. But there it is in all its ignominy. Fortunately, it is now buried pretty deeply in my chart that you have to purposefully search for it, although it was readily apparent that night by the time I got to the hospital in Greenville, SC.

The phrase, sex and drugs and rock ‘n’ roll is the title of a song by an English musician, Ian Dury.

Why do I use it?

In six and a bit words it the shortest and most truthful answer to the question, “What brought you to America?”

More shall be revealed.

Numb’s The Word

One of my favorite redundancies is the phrase: “It goes without saying,” because without fail it is followed by the very statement that could have gone without being said. That phrase is remarkably similar to someone saying: “Long story short,” in the middle of what has already been developing into a jejune saga of epic proportions. At the risk, therefore, of stating the obvious and without launching into a lengthy narrative about the hero’s journey, I can attest that the survival of a near-death experience is catalytic, to say the least. Obviously, I cannot speak of the near-death experience itself as, I have previously explained, I have no memory of it. But the aftermath of the event, living in and with the survival has been, and continues to be a complex and perplexing journey. It too qualifies as a WTF? phenomenon.

Concerned and caring people have asked how I have felt, what my feelings have been regarding the near-death experience. They say, “You’ve told us all the facts but what of your feelings?” And “Was it a spiritual experience?” In other words, having not died and survived, did I feel closer to God? Did I feel God saved me? Did I look upon life differently, with more reverence?

Writing about it is easier because in answer to the question, “What was it like?” I’d just leave a blank page like this:

A conversation, however, might go something like this:

“How did it feel?”

“How did what feel? I was pretty numb and couldn’t feel much of anything.”

“No but, what were your feelings when you finally came to and learned not only what had happened to you but what your future looked like?”

“WTF?”

“I’m sorry, I don’t mean to pry. I was just wondering…Were you sad, angry, afraid…?”

“WTF?”

“Oh, come on now.”

“No, not you. WTF? is what I felt.”

“WTF? is not feeling, it’s a thought.”

“I think it is a feeling. It’s how I felt which is what you were asking. Are not feelings thoughts? Are they not mental associations and reactions to an emotion played out in our heads? I think I read somewhere that there are over 4,000 feelings listed in the English language. Why not, WTF? That’s my final answer.”

“Wait a minute. You’re telling me that, after all the trauma you endured, you felt nothing?”

“No, I gave you my final answer, I thought/felt WTF? Listen, if it makes you feel any better, I’ll give you an extension on the final answer. I felt numb, which is probably a more accurate assessment of my state of mind at the time. WTF? would be too descriptive.”

Numb, physically from the anesthesia and other medications and numb mentally from all the trauma. I was not expecting it, any of it, the blood, the cardiac arrest, the cancer, and it was all too much to handle. I think the numbness lasted, in varying degrees of intensity for many days, even weeks, months and perhaps a whole year. Today, writing this, 6 months cancer free and on a regimen of immunotherapy drugs, there remains a slight numbness and like most states of mind or phases that we pass through, they are only recognized and named in retrospect. I was not aware of the persistent and pervading state of numbness until quite recently when a good friend of mine was in a similar state, although for different reasons, and in perceiving his condition my own was unveiled. Had not the numbness been brought to light I would not be writing about it.

For the purpose of explanation and for my own edification, I looked up the word, numb; its synonyms and its origins, its etymology (which is one of my lesser passions.) There are quite a few synonyms for the word numb and I was trying to find the ones that most closely fit my mental and emotional state. The following words come close, perhaps even all of them together: narcotized, be-wildered, entranced, lacking, or deficient in emotion or feeling, indifferent. The origin of the word gives an excellent hint of the feeling I am trying to describe. Numb: from the late Middle English (circa 1400) word, nome, meaning taken or seized.

I Never Wanted to Play Like Robert Johnson Anyway

Photo by Keith Curry on Pexels.com
I died and didn’t go to heaven; I went to the other place
Where I met the smiling devil standing there, face to face.
She reached out her hand to me and touched me on the chest,
And the seeds she had planted there writhed like vipers in a nest.
She looked at me in the eye and said, “It’s too late, my touch is the curse,
You may as well give up now, the pain will only get far worse.”

I looked back at her and spat more blood into her eye,
“You’ll have to do better than that,” I said, “I’m not yet ready to die.”
I turned and ran back looking for the way I came,
I could hear the devil behind me laugh and call out my name.
I grabbed a souvenir tee-shirt that said, 'Hell Is On The Way'.
Then I yelled, “I never wanted to play like Robert Johnson anyway.”

The Devil’s still there lingering like a whore in the night,
Leaning on the threshold, half in shadow half in sight.
Her voice is soft and seductive but her eyes are cold as ice,
As she tallies up the reckoning like a bookie adding up the price.
“Why don’t you come on over honey, you know you can’t escape?
You’ve been mine for a long, long time; some would call it fate.”

There's something about the dark side that wants to draw me in, 
I guess the priests would all be out of work if we didn't like to sin.
I only ever waded in those waters, I never went for a swim,
Where the currents sucked you under in a race you could never win.
“Like old George Jones, I made my choices long ago and I’ve paid my dues,
But I think I’ll wait this one out, what've I got to lose?”
“And I’ll say it one more time and I’ll say it every day,
I never wanted to play like Robert Johnson anyway.”

The idea for this poem that could be a song, was born before the cancer diagnosis and before I flat lined. The seed was planted one night listening to a couple of local singers, in Atlantic Beach, FL extolling the virtues of Robert Johnson. I am not a big fan of Mr. Johnson’s music but I respect his talents and do allow that he was a major influence in the creation of the blues. He has been called the “father of the blues” whose story has been blown into mythical status. He was the one, you may recall, who was purported to have met the Devil at a country crossroad in Mississippi where he sold his soul in order to better play the blues. Now, perhaps, you see the connection.

The idea simmered in my mind, almost forgotten until I was lying sleepless in that ICU unit and the story of my own near-death experience was relayed to me. I had no glasses with which to see, no pen with which to write and no paper on which to scribble the ideas for the song. Normally, when that happens, the words whither away from neglect and the song is lost.

Not in this instance.

I remember Keith Richards once making the statement in his inimitable London drawl that if you get an idea for a song and it’s still there the next day, then you’ve got a song worth working on. Once I was home from the hospital and reasonably settled the words came together. I was given the inspiration to meld the Robert Johnson legend with my own close encounter with death and create a somewhat humorous take on the whole experience. I call it a song but all I have are the lyrics. Perhaps I should revisit Robert Johnson’s works to find a suitable melody.

Late in the afternoon of July 3rd a pulmonologist attempted a bronchoscopy, putting a tube with a tiny camera on it, down my throat and further to look at my lungs. I would have been anesthetized for this procedure and this is when things got a little rough. I apparently started spewing blood.

Then my heart stopped beating. Paul, the anesthesiologist later said he worked on me for over 7 minutes. The pulmonologist has said I was “gone” for almost 10 minutes. Mary has said that at one point the pulmonologist came to her and asked the dreaded question, if there was anyone who could sit with her.

“Why?”

“He’s not doing too well.”

Mary has said she freaked out.

“No, not now. He can’t go now, it’s too early. We just got here.”

Mary called the only person she knew locally and that was the realtor’s assistant Debbie. Without hesitation, Debbie said she’d be right there and she was.

The pulmonologist told Mary they had to transfer me to an ICU unit. The closest one in Asheville was full. They had a special ambulance with a critical care team and would take me to Memorial Hospital in Greenville, SC.

Mary had no earthly idea where that was, but Debbie kindly offered to take her there. Once there Mary was able to talk to her son who lived near Fayetteville, NC and he said he’s come out there the next morning. Debbie was able to leave and go home. Mary slept that night in the waiting room outside the ICU in Greenville.

On the first day there I was treated to a CT scan and an MRI was done to check for brain damage from the cardiac arrest. None was found or so I’m told. Brave man that he was, considering what had transpired the day before, the pulmonologist in Greenville then did his own bronchoscopy. He ended up working on me for 4 hours. There was a large “mass” or tumor in the center of my chest, between the two lungs, this was pressing against my bronchus and making it difficult for me to breathe. He inserted a stent to keep the air passage from collapsing. He then set about trying to stop the incessant bleeding from the tumor. He later told Mary that he tried stitches, but they wouldn’t hold and finally, in desperation almost, he sealed up the tumor with Dermabond, or medical super glue.

More improvised lifesaving by a another very good doctor.

Then, just like the COVID-19 patients of the very near future, I was intubated, which means a large breathing tube was inserted down my gullet and I was placed on a ventilator.

Mary bedded down in the waiting room. Support troops in the form of her son and grandson arrived early the next morning. They were able to get Mary back home for some much-needed rest and generally provide essential emotional succor. Support for the support.

Each day, Mary made the 40-minute drive to the hospital to sit by my side and talk to an unresponsive me. I’m told that once a day the medical team would “bring me back” for a short while but the drugs were working well, and I have no recollection. Mary would then make the 40-minute drive home to be alone in an empty house in a place where she had no friends or even casual acquaintances. How she managed, I do not know. I have never heard one word of complaint: not of those days or ever during this whole odyssey. Many people use the word “journey” for this trek through the forests of cancer, but it is a too mild sounding word. I wish there were a word that more aptly describes the progression we and every cancer patient and their families follow, the lows, the fears, the joys, the let-downs and all the physical abuses of the treatments. To me, “journey” is, by far, too gentle of a word, it is too ordered and civilized to describe the mental and physical chaos that ensues when cancer, or any life-threatening disease, suddenly and silently creeps into your body and begins to possess both it and not only your life but the lives of all those around you.

There is no such word. I know. I have looked.

The Big BUT

Home finally; sanctuary and familiarity at last. My own bed that did not, at the push of a button, move into a hopelessly uncomfortable shape that only a yoga adept could endure. A bed I could get out of without disconnecting inflating ankle cuffs and a nurse running into the room.

Rest.

Quiet.

Privacy.

Sleep uninterrupted.

After the rest, the reality.

“And the reality is,” cries the Master of Ceremonies over a pre-recorded drum roll and fake crowd noise, “Your heart stopped beating and we brought you back,” fake cheers.

“Then you couldn’t breathe.”

The fake crowd goes, “Ooh!”

“We inserted a stent into your bronchial tubes so you could breathe and patched up the bleeding tumor with crazy glue.”

More pre-recorded, “Oohs, ahs,” and cheers.

“We’ve got you breathing and walking and living…”

And now comes the Big But…

“Your time is limited.”

The fake crowd is silenced.

“You have stage IV lung cancer and it is inoperable and basically incurable.”

There is no stage V, as a friend was kind enough to point out recently. I didn’t know that.

Safe once again, in our new home, still cluttered with unpacked boxes and moving crates and no more long, daily commutes for Mary with uncertainty as her destination, we had to face that Big But. No one said this, not even Mary or I, “We’ve given you back your life BUT not for long.”

We found ourselves in a very strange place trying to coexist somewhere between gratitude and uncertainty. Although she did not show it, I think Mary felt the fear far greater than I did. Not only was I still in the state of numbness where I was not thinking or feeling at anything close to 100% capacity, I understood and accepted the inevitability. Fear was present, fear of the unknown and had things progressed as had been initially expected, that fear might have grown. I was fearful for Mary. I could imagine her fears for her lonely future. For that I felt a deep regret. There was sorrow that just when things were getting good it was going to end. I held this strange, almost karmic belief, that the lesson of my life was that once I had learned to love life, when I had finally learned to love, I would have learned my lesson, graduated, and this particular life journey would be over. I would be done with this mortal coil, returned to the sphere of the spirits to await the next incarnation, as some would believe.

And me? Do I believe in reincarnation? I’m not sure. I am not going to shut the door on it completely. As a proponent of past life therapy once said when asked if he believed in past lives, “On odd days I do, on even days I’m not so sure.”

When I have told people, friends, of how close I was to death many ask the inevitable questions about “seeing the light”, about “being out of the body” or my life flashing before my eyes. In the past I have read many books like the Celestine Prophecy, I’ve undergone past-life therapy, explored numerous texts and spiritual paths. I am familiar with the survival stories of others and their spiritual awakenings, but this never happened for me. There was no spiritual space or interlude between not breathing for 7 to 10 minutes and being saved. There were no visions of sunlit meadows, there was no epiphany, no instant or gradual state of grace. It was out of the frying pan and into the fire, there were practical details to be sorted and no time for contemplations of higher powers. It was not a conscious avoidance it never consciously crossed my mind. My thoughts were on the living and the practical, there would be plenty of time for the pie-in-the-sky later.

Right then and there Mary and I needed to have The Talk.

The Talk

Ignorance is not blissful; it is downright disheartening. For all we knew I was going to die fairly soon, and we needed to face that reality. We did not know then that, thanks to the massive strides researchers had made and the effectiveness of the treatments, people were living with cancer for many years. No one had proffered any dates or a guesstimated timeframe. We had been told that I had stage IV lung cancer and they could neither cut it out nor cure it. Quality of life not quantity was hinted at. No one said, “You should get your affairs in order,” or words to that effect, we just took it upon ourselves to face what seemed inevitable.

The talk occurred a few days after my release from hospital. We did not plan it. There were no memos sent, no dates penciled in on the calendar. One day when the elephant and its stink loomed large in the room obstructing our daily routines, we sat down to clear the air. I don’t remember much of what was said. I think you can imagine the conversation and you would be correct in thinking it was not easy.

The talk is a very personal and perhaps private conversation about which my instinct tells me not to share the intimate details. There were tears and affirmations of our love. Regrets were not mentioned. We soon turned away from the almost overbearing emotions of sorrow and loss and focused on the practical. Many books, informational pamphlets and articles have been written, I would suppose, suggesting the best way to have “the talk;” the how, what and when of the secular “last rites”. The only guidelines we followed were our instincts which had served us well in the past. They served us well again.

It appeared obvious that Mary was going to outlast me, so we talked about my choices for the final arrangements. Mary burst my bubble when she pointed out there were laws against being laid out in a wooden boat, pushed out to sea, and ignited by flaming arrows. I did say that I would like my sister Jane, who lives in England, to come and see me here before I died rather than after so that I could see her rather than she merely “viewing” my body, or remains – what a terrible term that is. Much to my relief, bucket lists were not mentioned. For some reason I dislike the idea of bucket lists. Although I have lived a far from boring life, there are many things I haven’t done but I don’t feel the need to frantically collect more experiences just to say I had done it. To whom would I brag about them? If you can’t tell the tale, what’s the point? At this time, I still believed my life expectancy was limited so there would not  be much time to do a whole lot. My list would fit more in a tin can than a bucket. Rather than rushing around gathering exciting adventures, my tin can list was more tranquil; publish a book, record a final CD and above all make these days the happiest and most carefree ones for Mary.

We decided to continue with our lives as much as we could. There were still moving crates to be unpacked and we had plans for the house and garden. I made a mental promise to myself to gradually show Mary how to take care of all the mechanical details of house maintenance that I normally performed. I would show her where the tools were kept and how to use them so that she could be independent when living alone.

Alone, that dreaded word hung heavy in the air between us.


Fear

If I start with a state of normal awareness in July 2019, B.C. (before cancer) and compare it to my state following those five traumatic days, it very much feels as if something has been taken from me. Just as my memory was taken by the anesthesia, the theft of my feelings was involuntary. No one asked my permission, no one warned me that this would be. It just was and is and I have had to deal with it. The saving grace, if you will, is that I was no more aware of my numbness than I was fearful of the outcome. I was not fearful when I awoke in that strange ICU and was told that the future did not appear too bright. Fear, fear for myself, had been kidnapped along with the other emotions. All except love. Love it seemed bloomed more strongly than ever. I have felt rather narcotized and entranced, that the normal intensity of emotions and feelings has been diminished, has been taken from me. Numb, to me, implies no sense of pain, as does the synonym narcotized, and although I still experience painful feelings and emotions, their intensity is less than I would expect it to be. I was not desensitized; I was able to feel yet it has been as if I was almost detached from the sensations themselves. An admirable Zen-like state, you might think but not quite, there is something off, something not quite in sync.

And what of fear? I was not fearful when I was returned to consciousness in a strange bed, in a strange room in a strange town with strangers standing at the foot of my bed. That, I suppose, could have been another side-effect of the memory-stealing drugs. Boy, what I would have given for those drugs back in my oblivion seeking days of active addiction. I was not totally fearless because in spite of my bewildered state; I was fearful, concerned might be a better fear-based word, for Mary and about finances. The trepidation was purely intellectual, there were no physical reactions like a pounding heart or that twisted, acidic feeling in the gut, just a calm, mental apprehension. I am no drama queen, but I am no stranger to the physical effects of fear on and in my body. I have been known to obsess endlessly over trivial matters and to live precariously in the wreckage of the future. And now, when my future was uncertain, the implied warning of a drastically shortened life-expectancy could not phase me. It was apparent, dramatically so, but my first feelings, I think, were for Mary. How was she doing? How was she handling all this? She must be devastated. I was also worried about the cost. How would we pay for all this? Would we have to move out of our new home that we both loved?

Mary had her own trauma. In writing about this now, revisiting, as it were, the scene of the crime, I was telling Mary about my feeling numb, and I asked did she feel the same way. Her response shocked me.

“I was terrified.” And that was all she had to say.

I had no idea, being oblivious in my numbness. Yet it was not me that was missing signals, it was her strength at hiding the signs of her terror. Not once did she show her fear for me or for herself. She was there every day, strong, supportive, loving and positive. Never once did she exhibit any doubt, to me at least. It is a cliché, but she was my rock, I knew I could lean on her both emotionally and physically and she neither stumbled nor fell. She has told me recently that she was petrified not only of losing me but of how to care for me. What would she do if I started spewing up blood again? How would she cope if I stopped breathing? She has told me she had her huge moments of doubt, pain and helplessness when she would break down and cry. Always away from me, out of sight and sound. Mary was my support; she had none. There was no one she could lean on. We had just moved into the area thirteen days before. The closest person was her son who lived four hours away.

Had Mary faltered and shown me her fear, her near desolation, I might have felt panicked myself. The irony is I was trying to be strong for Mary who was trying to be strong for me. Ultimately, I believe, our strengths combined building the fortitude for our shared survival.

Guilt is the one emotion I felt, although the numbness took the edge off that as well.

“I’m sorry,” I repeated over and over to Mary.

Sorry for all the worry.

Sorry for all the pain.

Sorry for you to have to deal with it all alone.

Sorry for fucking up the dream of our retirement and making it a nightmare.

I had more guilt than a Catholic converting to Judaism.

Again, the feeling was intellectual, there was no physical sensation. The mind and the body were somehow disconnected.

The third component of the Triad, the spiritual, remained strangely still.


Elusiveness

I have been searching for an elusive word, a synonym of both helpless and powerless. Those two words, although similar in meaning, have slightly different connotations. For the moment, I shall not go any further with that debate. I cannot find a suitable nor an appropriate synonym for either of those two words. There is the word, “incapacitated,” but that is far too clinical sounding. It is very frustrating and to make matters worse, as I leaf through pages of thesauri (or is it thesauruses?) physically and online, that wonderful song, Helplessly Hoping, performed by Crosby, Stills and Nash, with its dazzling harmonies, brushes through my mind distracting my purpose.

Why?

Lying in a hospital bed, hooked up to all kinds of monitors, the machines of medicine, there was nothing much I could do. Nurses and the occasional flying visit of a doctor or two, took care of my basic needs, I didn’t even have to get up to go to the bathroom, I was hooked up there as well. Acceptance was forced upon me, as it is on any patient in that position. What was I going to do, act like some movie hero, leap out of bed, tear off all the apparatus and go wobbling off to save the world or at least resume my life? Had I done so, that damnable bed alarm would have shrieked, and half of hell would have come running to stop me. Thanks to that numbness that I wrote about, I was fairly unaware of my helplessness. I was confined to a bed in a time-warped hospital cocoon safely isolated from the outside world. Dates and days of the week had little significance as time dragged sluggishly by. My role was to just lay there, let them administer to me, listen to the opinions of the very serious-faced doctors, and be grateful that I had Mary to visit, comfort and love me.

Easy peasy.

Not so for Mary, my caregiver, she was walking, living and breathing in the “real” world facing a far different reality from mine. Every day, she had to drive all the miles from our new home, sunny and bright only to re-enter, again and again, the artificial atmosphere of an ICU. As I lay in my drugged state of oblivion, it was she who listened to and was forced to cope with the truth. She could envision the potentially bleak future that lay ahead for me and she had to face the prospect that I might not be in that future for very long.

For Mary there was no escape, no oblivion, no numbness.

No wonder she was terrified.

When I was released from the hospital, feeling good to be back in “the world,” Mary could feel relieved that I had recovered and that I was at home and able to function on a fairly normal basis but internally the questions hovered around her mind like pesky gnats.

“How can I care for him?”

“Can I, will I be able to care for him?”

“For how long will this go on?”

I am sure those few words. “In sickness and in health,” recited by rote in the wedding vows, suddenly held a whole new gravitas and meaning for her. In a flash, Mary became an instant caregiver – just add water and watch her bloom. No one asked her if she wanted to be a caregiver. No one asked if she wanted to take on this new role. There was no time for mental or emotional preparation, the position was suddenly, and without ceremony, thrust upon her. For every action there is an equal and opposite reaction. The dynamics of our relationship changed, the balance had shifted and our individual roles as equal partners in a loving relationship had unexpectedly altered, literally overnight.

Such is the power of cancer or any serious illness. The effects and consequences of its presence reach out like the tentacles from a cancer tumor affecting so many other people far beyond the relationship of the patient and the caregiver. Cancer does not care; it is an equal-opportunity destroyer. Conversely, it can also be a builder.

Spouses, of both sexes, not only like to fix things for our partners, we like to fix our partners – we like to make them better when they are ailing, fix what appears to be broken. For clarification I am referring to simple acts of kindness and partnership not abusive control. B.C. (before cancer) Mary and I had shared that role but now the balance had shifted. She became the main fixer; she became the cheerleader and psychiatrist when my spirits got low. Mary had to now tackle the chores that I could no longer perform. I did not lose my role completely; I would try to be solicitous of Mary and I was conscious of being a burden. To be honest, however, I know I was not the easiest person to be around when the steroids from the chemotherapy treatments kicked in.

We both learned to accept the situation, to adapt, adjust and move on. Our relationship endured one day at a time. We loved, one day at a time. Every morning we would reaffirm our love, lying in bed, holding hands and snuggling together grateful for and ready to face another day together. Our love somehow deepened. Cancer was trying to destroy my body. Chemotherapy and the radiation were trying to destroy the cancer but together they were both destroying something else. They were eating and burning away the bullshit. The frivolous and the petty, all those unnecessary conditions that seem to build up like rust over time, just melted away leaving the core, the very essence of our love

.I have remarked that cancer is an ego deflater. It strips away our pride faster than a critic’s tongue. I thought I had overcome my male ego a long time ago until this disease introduced me to new indignities. A hospital stay will rapidly reduce your sense of dignity, as when I was unceremoniously examined head to toe by that two-nurse-tag-team. But once at home and undergoing treatments the ego stripping continued – the fatigue, the adverse reactions to the chemicals, the incontinence, having everything done for me. The hardest thing to accept was the lack of strength, having to stand aside and let Mary lift the smallest objects. Once chemo-brain set in, my mind appeared to turn to mush. All this stripping and no pole, no fun, no music; what’s a poor boy to do?

I wish I could say I bore it like a gentleman, but I did not. I thought I did, I tried not to complain, I tried to put on a brave face. I remember being conscious of not wanting to add to Mary’s burdens and worries but alas I would get frustrated and fatigued and then the steroids, that cure-all wonder drug would kick in and I would snap like an angry turtle. I knew I was doing it but I could not stop myself. It was like visiting those old cocaine days when tempers would erupt without reason. No wonder they call it blow.

And Mary took the brunt.

Mary’s ego also took a battering. Her day was now focused on what she could do for me, to make my life easier. She has said that she was afraid, but she did not want me to see her fear. She wanted to be strong for me. And she was. She understood, better than me, I think, what was happening to me emotionally and she too swallowed her pride. She deserves a medal.

Today, Mary graciously and honestly claims that the whole experience has made her stronger; emotionally, spiritually and especially, physically stronger (from all the extra heavy lifting that I could not do). I too feel stronger spiritually and emotionally, although I am not as physically strong as I once was. Paradoxically, all that ego blasting, and bull-shit stripping has ripped off all the extraneous fluff of pride and vanity and has reestablished and reinforced the very essence of who we are individually and together. Our love is simpler, purer and stronger than it ever was before.

What were we missing if it took the devastation of cancer to do all that?

I don’t think we were missing anything, per se. We were simply not aware.


(To be continued)

Frustrated by trying to comment and/or add a “like” and having to create an account? I would be as well.

I can only sincerely apologize for this intrusive and distasteful feature. I cannot turn it off and was unaware of its existence when I signed up.

If you would like to contact me please do so via: words@johnlongbottom.net I would love to hear from you.

Thank you for visiting my website.

1 comment

  1. Your honest accounts of both yours and Mary’s experiences take my breath away. My husband and I are potentially having to go through some gruelling surgical procedures and I hope we can survive with our love intact. I sincerely hope we can keep our sense of humour and come through as well as you both. Thank you so much for having the courage to share these intimate thoughts.

    Like

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