Diaries of The Breadman’s Daughter: Take Two. Let’s Try This Again.

E and his band mate A wait to go on stage.

E and his band mate A wait to go on stage.

Sometimes I just want to start over. Tear out the page. Crumple it up.  Toss it into the nearest garbage can. Press delete. Delete. Delete. Begin again. Change everything. Rewrite the story.

Never have I wanted to do this more than with this story about E.

After the holidays, we settled back into our old familiar routine.  The one we enjoyed before the thunderclap of cancer struck. It was as if all that crazy-making stuff never happened.  Monday to Friday focused around our work.  Weekends were filled with errands, chores, family meals, music and church.  Smack dab in the middle of January we celebrated E’s birthday with joy and profound gratitude.  After the roller coaster ride of December this mundane life of ours felt good.  Humdrum was welcome.  The unremarkable everydayness had lulled us into believing that things were back to normal.  It was life as usual.

Not so.

Truth was, E’s appointment with the Radiation Oncologist was scheduled for the end of January.  There was no denying, nor getting around that.  This was “the meeting” where we would get the lowdown on this scary disease that had invaded E’s body.  The results of the CatScan and the biopsy would be explained to us.  This was where rubber would hit the road.

The Cancer Agency sent E a package of information to prepare him for this meeting.  He filled out the forms, read the brochures, watched the DVDs and composed a list of questions.  I borrowed a snazzy digital recorder from one of my colleagues to tape the session.  We were prepared.  At least so we thought.

I met E at the Cancer Centre on the afternoon of his appointment.  It was a mad rush from work to the Centre with five minutes to spare. I flopped down in the seat next to him expecting a long wait.  My plan was to scarf down a sandwich before meeting with the Oncologist.  Two bites into my cheese and lettuce and we were called.  I quickly stuffed the sandwich back into my bag and followed E and the intake nurse into “the room.”

We exchanged pleasantries with the nurse while she took E’s temperature and checked his blood pressure.  A few minutes later the Oncologist appeared.  It was one of those jaw dropping moments.  She was nothing like what I was expecting.  I was thinking someone more like Einstein or the original Dr. Who.  Someone who looked like they could cure cancer.  Not pose for the cover of Vogue.  She was drop-dead gorgeous.  Tall, slim, perfect skin and hair.  Beautiful smile.  Stylishly dressed from head to toe.  And by toe, I mean kick-ass high black leather boots.  She was lovely in every way and immediately put E and I at ease.

I switched on the recorder.  She began with a round of standard questions to determine E’s overall health.  What other things besides the mess in his mouth were causing him grief.  E rhymed off the litany of ailments that had been hurting, aching, paining, irritating and gnawing at him over the past two years.  It reminded me of the Skeleton Song we all sang when we were kids.  With the toe bone connected to the foot bone.  Was there anything that didn’t hurt I wondered?

After the inquisition, the Oncologist probed and prodded his neck and throat checking for lumps and bumps.  Looking for signs.  Was the cancer on the move?  Spreading like wildfire to the rest of his body or behaving itself and staying contained in the front of his mouth?

Modern medicine is full of wonders to behold.  Technological marvels that are mind-blowing.  Like the probe that allowed us to see inside E’s nose and throat.  More like science fiction than science seeing this strange interior world so close-up and personal.  Beyond the uvula. It reminded me of the Biblical story of Jonah and the whale.

After the examination the doctor discussed “the next steps.”  This took both of us by surprise. We thought we’d be leaving with a surgery date and a pep talk on how this would soon be behind us.  A little inconsequential blip in our lives that would be over with a quick snip and a stitch.  Not next steps.

E wearing one of his favorite Hawaiian shirts.

E wearing one of his favorite Hawaiian shirts.

What we quickly learned was that the results from the CatScan and biopsy weren’t one hundred percent definitive.  Inconclusive.  They didn’t know the full extent of the disease. Whether it had spread to other parts of his body.  So this uncertainty meant more testing.  Big Kahuna examinations.  MRI and PET Scan.

The drive across town to home was dismal.  Again I was alone in the truck.  A Gloomy Gus.  Consumed with worst case scenarios.  The wind had just been kicked out of our sails.  We had just spent the month believing that things were going to be okay.  E was back to normal.  He was feeling great.  Healthier than he had in a long time.  This wasn’t such a big deal, we thought.  Certainly not deadly.  Nothing to worry about.  A piece of cake.  Walk in the park.

For two smart people, we were seriously naive when it came to the Big C.

Back at the house, E and I spoke briefly about the appointment.  I asked him how he thought it went.

“Not good,” he said.

Then I knew we were in big trouble.

Diaries of The Breadman’s Daughter: The Weekend from Hell.

E singing and playing his bass.

E singing and playing his bass.

It was the weekend from hell. A topsy turvy terrifying roller coaster ride.  One moment we could see sunlight and the possibility of rosy days.  Only to be sucked into the uncertainty of the rabbit hole the next.  In between we did our best to breathe.  Keep our head above the icy waters that threatened to take us down.  Mostly we tried to make sense of this unforeseen mess that we found ourselves in.

The surgeon, who had performed the biopsy, sent E home with a prescription for painkillers and antibiotics.  In thirty years of practice, he’d never seen a reaction to a biopsy like this.  Lucky E.  One for the medical history books.  I was a little surprised that the surgeon wasn’t more curious to find out why.  Then I’m like a four-year old who asks ‘why’ about everything.  Except for why me or why us.  Life is a game of Russian Roulette at times.  Shit happens to everyone.  Good and bad.  So why not me.  Or us.

The painkillers did their job for short intervals, which gave him little pockets of relief throughout the weekend.  E spent most of the time hunkered down in his Man Cave watching TV or dozing off on the couch.  Deep regenerative sleep was elusive and interrupted by pain so severe it would have brought a lesser man to his knees.  But E refused to buckle.  Since his motorcycle accident at thirty, he lived with chronic pain in his hip and right leg.  He still felt unsettling phantom pains from the big toe that was removed shortly after his bike was t-boned and ended up in a gutter fifty yards away.  This pain was close to that.

During the interludes when the pain was tolerable we carried on with our regular weekend affairs.  Errands and chores mostly.  I was still doing most of the talking.  Acting as his interpreter.  Under any other circumstances I might have welcomed the quiet.  Instead I missed his chattiness and running commentary on life.

One of the things we managed to squeeze in was Christmas shopping for his sweet 94-year old Mama in Nova Scotia.  Every year he gets her the same thing.  A sweater and pajamas from Walmart.  E is a bit of a curmudgeon when it comes to shopping.  But Christmas shopping takes this crankiness to new heights.  The fact that he does it at all is a bigger miracle than the Immaculate Conception.  We combed through the selection of sweaters and PJs to find this year gift, then made a swift exit. The pain was returning and his tongue was again thickening.  Visions of baby’s fists were dancing in my head.

Back home, E noticed that the rear license plate on the truck had been stolen while we were shopping. E called the Cops to report the theft while I did a rant on the nerviness of the thieving creeps.  How could they pull off something like this in broad daylight? In a crowded parking lot full of Walmart shoppers no less.

Drinking was unbearable.  Eating impossible.  The pain “was like I’ve bitten down on my tongue real hard and can’t let go,” E said.

Imagine a cruel relentless Vice Grip.

By Sunday afternoon there was no improvement.  Painkillers were painfully useless.  A fiendish joke. We had no idea what the antibiotics were supposed to be doing.  Apparently nothing.  E agreed to another visit to the ER.  Before we could do that I had to get new license plates for the truck.

Things went from bad to worse.  While E rested on the couch, M and I drove across town in her car to an insurance provider that was open on Sundays. This should have been a straightforward no-brainer transaction.  Wrong.  As the insurance guy was filling out the form for the replacement plates he noticed that E’s name was on the registration of the truck.  It’s my truck but E’s name was included as a formality.

“I’m sorry Ma’am, but I can’t finish this transaction without your husband being here,” said the soft spoken insurance guy.

“Whadayamean?” asked the impatient cranky wife of a suffering man.

“His name is on the registration and he has to be here in order for me to give you new plates,” said the soft spoken insurance guy.

“Are you kidding me?  He’s really sick. I need my truck to drive him to the hospital,” said the increasingly impatient cranky wife of a long suffering man.

“I’m sorry Ma’am, but there’s nothing I can do,” said the completely-powerless-to-do-anything insurance guy.

M and I stormed out.  Mumbling under our breath.  Christmas Carols were wafting through the outdoor shopping centre where the insurance  provider was located.  It was an irritatingly cheerful and festive juxtaposition to our dispirited foul moods.

Back home, I conveyed our frustrating story and lack of success at obtaining the license plates to E.  He was furious and raring for a good squabble.  And if not for his inability to speak coherently he would have been all over that.  To end things on a peaceful note, we went to a different insurance provider to get the plates.  Happy ending to that part of the story.

By the time we got back home, it was early evening.  We decided to have dinner and then go to the ER.  M and I devoured our meal while E forced a few tablespoons of mashed potatoes past his raw cheeks, over his swollen tongue and down his throat.  It was excruciating to watch.  I can’t even imagine how it felt.

We never did go to the ER that night.  E wanted to see his own doctor in the morning. He may not have been able to swallow.  Nor speak clearly.  But he was still capable of making decisions that concerned his body.  We went that.

When I left for work the next morning he was sleeping peacefully.  The plan was for M to drive him to the doctors.  As I was driving up the long and winding country road that leads to the Agency, I was finally able to achieve some clarity.

This thought hit me like a ten pound hammer.  E had barely eaten nor drank anything since Wednesday night. How long could someone last before their organs started to shut down?

The second I got to my desk I phoned M.

Diaries of The Breadman’s Daughter: You Could Die Waiting.

Boo looking up at E at the top of the garden.

Boo looking up at E at the top of the garden.

I have a big patience muscle.  I haven’t always.  But the older I get the bigger it grows.  It was tested fully those tedious grey hours that we sat waiting for a doctor in the ER. Each minute that passed felt like an hour.  I became the irritating kid on a road trip asking, “Are we there yet?”  Only my question that night was, “Is he here yet?”

M pulled out her Anthropology textbook and passed the time reading, listening to music and texting her best friend A.  Teenagers bring their cellphones to bed with them so they are there for each other 24 / 7. This wasn’t unusual. It’s a fascinating cultural phenomenon that is completely foreign to me, being that I’m as old as dirt after all.  I don’t judge.  It works for them.  I on the other hand, frustrate my daughter by my reckless lack of interest in my iPhone.  I use it primarily to take photographs, videos and record sounds.  I am also an Instagram addict.  But mostly the thing is either tethered to my iMac or lost in the bottom of my purse under wads of used Kleenex and other female essentials and paraphernalia.

During those wee hours of December 6, I amused myself by watching the monitor behind E.  It was hypnotic.  And almost as compelling as watching C-SPAN.  The endless minutes ticked by.  I spotted a miniature box of Kleenex on a shelf beneath the monitor and handed it to E to wipe his mouth.  He had the small bowl the nurse had given him resting on his chest to collect the steady flow of drool.  It’s funny the things that capture your imagination at times like these.  The bowl appeared to be made of the same material as take-out holders for drinks at fast food joints.  I wondered if it was sturdy enough to hold all that liquid pouring from E’s mouth. Would it turn to mush and melt all over him?  That’s all we needed on a night such as this.

Fatigue and weariness became intimate bedfellows, wreaking havoc with my emotions, which were fragile at best.  My body felt burdensome and heavy.  At one point I laid my head on the edge of E’s cot and closed my eyes.  I prayed for just five minutes of sleep. Just five lousy minutes.  Oh God, let me escape.  Get away from this insidious nightmare that held us captive.

With sleep turning it’s back on me like a jilted lover, I got up and tiptoed over to the nurse’s station.

“Do you think the doctor will be here soon?” I asked politely.

“Give it fifteen more minutes,” Nurse One replied patiently.

“My daughter has an exam in the morning and I have to work,” I said.  Not that it really mattered.  I just felt compelled to say this out loud.

“It shouldn’t be too much longer,” she assured.

“Okay,” I said, as I slunk quietly back to my chair next to E.

I was overcome by the 3Ds.  Defeated. Deflated. Depressed.

Then just like Nurse One promised, fifteen minutes later a lanky older man appeared suddenly out of no where.  The doctor had arrived. Hallelujah.

One of the other nurses emerged from behind their station to consult with him.  We were less than ten feet away so we could hear everything.  She gave him a quick rundown on the patients waiting for his attention.  There was the old lady in the wheel chair, the drunk guy sleeping on the gurney, and there was mouth guy.  Everyone was identified by their condition.  It was fast and efficient.

The doctor attended to E first.  Perhaps because he was one of the few who were conscious at that moment, or maybe my earlier query on when the doctor would arrive made me a squeaky wheel, or perhaps it was just our proximity to the nurse’s station.  It didn’t matter to me why E was the first to be treated.  I was simply grateful.

I filled the doctor in on the events that had transpired in the previous twelve hours — from the secret biopsy in the afternoon to the episode in the bathroom earlier that night.  A blow by blow account of E’s symptoms.  E interjected with the odd garbled comment.  No one really knew what he was saying.  The doctor scolded him for keeping secrets this big.

Then he asked E to open his mouth.

I peered over the doctor’s shoulder and got my first glimpse of what was causing all the grief.  E’s tongue was the size of a two-year old’s fist.

“Whoa,” I blurted. “Holy crap.”

The doctor sat down in my chair and crossed his long legs in a relaxed easy manner.  I stood across from him with M by my side.  We hung on his every word like he was our lifeline to hope and salvation.  He’d prescribe pain killers and call the surgeon who conducted the biopsy.  He teasingly proposed that M and I go home and get some rest.  E was in good hands and would be able to sleep once the medication kicked in.

Truthfully, M and I were relieved to be sent home.  The doctor was right.  E was in good hands.  There was nothing more for us to do that night.

M drove the truck home while I sunk into the passenger seat, thankful to be driven.  The rain had stopped but the streets were slick and wet.  We discussed the events of the evening. We were both a little shell-shocked.  M had been quiet and said very little during our vigil in the ER.  But in the shelter of our Ford Ranger she was able to share some of her feelings with me.

“I didn’t appreciate the nurse referring to Dad as mouth guy,” she said.

“I know,” I said.

“They shouldn’t talk like that in front of people’s families,” she said.

I understood my daughter’s hurt feelings.  But I also understood that this was just the everyday language of the ER. The nurse’s comments were not intended to cause harm. In fact, just the opposite was true.  They were merely the parlance of dispatching critical information with as much speed and economy as possible.

But I was too tired for explanations.  And she was too tired to care.

Silence filled the truck.  M and I were consumed with our own private thoughts.  As we were floating across town in a semi-dream state, I remember this horrible feeling of dread pass through my body.  Like thick black tar.  I flashed back to a year earlier.  To the week in September when our sweet little Jack Russell, Andy suffered a heart attack and died with me by his side.  E was in Nova Scotia burying his father, while M and I were thousands of miles away on the West coast.

It was just the two of us that week. Taking care of Andy. Watching him slip away. Overwhelmed by sadness. Paralyzed by grief.

This felt just like that.

Diaries of The Breadman’s Daughter: The Demon in the Dark.

The Bass Man and Boo in our garden.

The Bass Man and Boo in our garden.

On Thursday, December 6 at 1:00am my world was rocked.  Not by my teenage daughter playing her music too loud.  Nor by the sound of a car stereo blasting its way past our quiet house.  No, this was far more sinister.  And threatening.

I woke up to the disturbing sight of E in the hallway holding his head in his hands like a pumpkin leftover from Halloween.  He must have switched on the light because I could see him so vividly heading towards our darkened bedroom. Like a zombie, one of the characters from The Walking Dead. He was stumbling and mumbling.  I had been sleeping and had no idea what time it was, nor did I comprehend the scene that was unfolding.

Startled, dazed and confused I leapt from our bed.  E stopped and did a 180, then shuffled off into the bathroom.  I followed.  I stood in the doorway and watched as he draped his face over the toilet bowl.  His mouth agape.

“What’s wrong?” I cried. “What’s happening?”

E sounded like he had a mouth full of marbles.  Saliva was pouring like clear corn syrup from his open mouth. A steady viscous stream of treacle. He continued to hold onto his head like it was a bowling ball.  Burdensome, heavy and tiring.  One false move and it could slip from his hands.  Shatter everything.

Terror-struck, I asked again what was wrong.

This is what I heard:

“Biopsy.  Cancer.”

This is the frenzied conversation that followed:

“Cancer!  No-no-no!  What do you mean?  What do we do?”

“Call 811.”

“811? What is that?”

“The nurse.”

“I’m calling a nurse?”

“Yeah.”

So I called the nurses hotline.  I was still dazed and confused.  Still hadn’t registered what was happening. Everything was haywire. A living nightmare.  A million thoughts were exploding in my mind all at once.  I went from zero to the deepest darkest scariest place in no time flat.  I lost it briefly.  And then jumped into action.  It was the only thing I knew how to do well.  Act.

In our retro 40’s home, we have a little alcove in the hall where the phone is hung.  It is directly across from the doorway to the bathroom so I had a clear vantage point to E’s agony.  It was gut-wrenching to witness my love, my brawny man, so vulnerable and in such pain.  Heartbreaking to see his beautiful blue eyes gripped with anxiety and distress.

I began to have this two-way conversation with E and the lovely (and calm) nurse on the other end of the phone.  Her voice was soothing.  Comforting.  Reassuring.

I still didn’t understand fully what was going on at this point.  I just knew it was bad.  In every sense of the word.  I explained to the nurse, as best I could, the symptoms that E was presenting.  I’ve never been adept at understanding people who don’t speak English very well.  I’m embarrassed to admit that accents are my Achilles Heel of communication.  The mumbo jumbo dripping from E’s mouth was way beyond that.  Nothing made sense.  Partly because I was in a state of shock and what he was saying was simply unbelievable.  Mystifying. Inconceivable.  And partly because E was incapable of talking.  It was like his mouth was full of bad food or dirty socks.  Every word labored.  Garbled. Distorted.

If it hadn’t been so terrifying, it would have been quite comical. We were participants in a game of charades where I had to “guess the symptoms.”  I managed to figure out that he was experiencing severe pain in his mouth.  His tongue was swollen.  He couldn’t swallow.  Saliva was pouring by the bucket full into his cupped hands.  But he had no trouble breathing.  The silver lining in the black cloud hanging over his head.

The nurse listened patiently and then offered two options.  Either call an ambulance to take E to the hospital.  Or drive him there.  Since it was E’s life I gave him the choice.

Within minutes E, our daughter M and I were on our way to the hospital.  I drove while E sat next to me in the front of the truck.  M sat in the bumper seat in the back of the cab, her University textbooks in one hand, cell phone in the other.

The nerve-wracking journey across town was long, dark and eerily quiet.  We hit every red light, which only exacerbated my frustration and fear.  It seemed to take forever to get there.

As I drove I took E’s hand and held it tight. I didn’t want to ever let it go.  Tears began to flow. Then anger.

We had a brief conversation that went something like this:

“Why didn’t you tell me you were having a biopsy?”

“I didn’t want to worry you.”

“Worry me?  Look how well that worked out for you.”