30

It’s a different kind of frightening, not knowing what to be afraid of.

It’s been a harrowing three days in no-man’s-land.

I’m sitting in the waiting room of the hospital now.  Cliff is having a biopsy procedure.

We received a call earlier today from his normal G.P., who offers excellent advice. ‘No point in worrying until you know what you’re worrying about.’  So we try to put it out of our minds.  The best we can manage is to tread water and go through our day feeling nothing.  We have to shut off our emotions and just wait.

It’s like we have flattened ourselves up against our bedroom wall because we’ve heard a monster in the hall.  We try not to breathe, not to make a noise or blink.  We listen hard for the monster, acutely aware he is in the house.  But all I can hear is the deafening drum of my heart in my ears.   If I let myself think, even slightly, about the possibilities of what that monster might be like, my brain wants to walk out into the hall and investigate.  Like those stupid idiots in horror films who go toward the danger.  Back, back, back.  Back against the wall.  Just wait.  It’s safe there.  Our curious brains want to demystify the fear, so we can deal with it better.  It’s a different kind of frightening, not knowing what to be afraid of.  We will meet with the oncogolist on Tuesday for the results.

Love, Esser

27

Looks like he’s got an extra heart. That’ll come in handy since mine has stopped.

The oncologist who was supposed to meet us is not available at such short notice.  The temporary oncologist takes a general history, which is all fabulous.  Then she says, ‘Just looking at the lumps, we can’t tell what it is.’  She shows us the x-ray.  I don’t know what I’m looking at.  I think the x-rays looks like Cliff has two new, big organs.  I ask her to explain what that organ on his heart is.  What could that be?  What goes there? I can’t think of an organ that’s supposed to be on your heart.  I try my best to remember high school anatomy and can’t recall seeing any other organ that shape there.  And, whoa, there’s another big organ sitting on his lungs.  What?  Maybe he has an extra heart or an extra lung or something, you know, like some people have an extra toe?  She explains those are the tumours they’re worried about.

Oh.

My.

God.

They are bigger than I imagined.  I was imagining little things – cherry-sized.  These are big, egg-size tumors, piled on top of each other.

We try very hard to get some guidance from her.  This does not look good, but it’s probably nothing, right?  ‘Well, it could be lymphoma,’ she says.  We hold our breath. ‘Or, it could be sarcoidosis.’  We breathe again.  Sarcoidosis is basically just tissue and it goes away with steroids (well, that’s the simplified version of what she said).  She won’t give us anything to be sure about until there is a biopsy.  She insists that’s the only way to know what we’re looking at.  Without being able to get more from her, we leave.  A biopsy is scheduled for this Friday.

Love, Esser

26

The phone call from Hell comes in the basement of a church.

My full name is Sarah Jane Washington.  But you can call me Esser.

Sarcoidosis.  Big word.  It’s an auto-immune disease with no cure but pretty good treatments.  It’s not a very nice thing to have.  I wish Cliff had it.  That’s what we thought he had for about a week until we got his test results back.  Obviously, I wish he didn’t have anything at all, but ‘even lymphoma would have been better than this,’ the oncologist said.

Cliff has been diagnosed with mesothelioma.  No cure.  No treatment. No hope for life after one year.  Well, we have hope.  But the doctors don’t.

They give him six months.

We were obscenely happy B.C. (before cancer).   This is the story of how we are stealing back the happiness, which, rightfully, shouldn’t be ours any more, and how we bravely and greedily grab even more A.D. (after diagnosis).

 

4.45 p.m. The ringing is so loud! I knew he was going to ring, but honestly, it’s deafening in this tiny toilet room in the church basement where Grant, our ten year old, is having his piano lesson.  Bother.  How do I turn the volume down?  I fumble with the phone and it falls to the floor.  Screaming like a siren.  Finally, I manage to answer it.  The name of the caller appears on the screen.  This is the call I’ve been waiting for.

I say, ‘Hi.’  And he says, ‘Hello.’  ‘So,’ I ask.  ‘What did she say?’  I’m casual in tone and calm inside.  I’m more worried about negotiating my current activities and getting out of here without dropping the phone in the toilet.  I’m forever wrecking phones.  This is my third phone this year.

A week ago Cliff casually mentioned that he had an appointment with the GP (doctor) because he had a tickly cough that wasn’t improving and he was more short of breath than normal on his bike ride to work.  No big deal.  He’s pretty good at looking after himself and so without much notice from me he took himself off to the GP.  She sent him off for a scan.  No biggy there either.  He had a sore on the right side of his ribs six months ago, which they never really figured out.  He got some scans, blood tests, physio appointments and they all came up clear.  Nothing there.  And then, just as mysteriously as it had arrived, the pain inexplicably disappeared.  Gone.

Their best guess was shingles or some other simple and innocent, though inconvenient and uncomfortable, condition.   So, when he went off for another doctor’s visit and scan, it was no big deal.  Furthermore, he is the biggest, strongest, fittest, fastest, healthiest 48 year old you could ever hope to meet.  Did I mention handsomest?  Not relevant, but has to be said.  After 22 years together, I still stare at him and think, how the hell did I land that?

So, today Cliff came home from work early at 4.00 pm, explaining he’d received a call from the GP asking him to visit her office immediately.  She wanted to discuss the results of the scan in person, ‘not over the phone’.  A bit odd and overreactive we thought.  She isn’t his usual doctor; Cliff’s doctor is on holiday (vacation).  We thought perhaps she is young and inexperienced.

Whatever, I thought.  He’ll get the results and he’ll be home early for a bit of extra family time.  It’s such a nice bonus having him home early.  So he went in to see her while I dropped off our two youngest boys at my parents’ house for a play and drove Grant to his piano lesson. Cliff said he’d call me with the results, so I wouldn’t worry unnecessarily.

So the call.  When I finally gathered the phone up to my ear and sat back down to talk with him, he told me, ‘She found five large lumps in my chest …’  He said it so directly, I thought it was a joke. But then he didn’t say anything else.  He just said that. ‘She found five large lumps in my chest..’  Then silence.  I was waiting for the punch line.  Nothing.

I blinked.  A lot.  My brain was spinning.  Still nothing, so I filled in the gap. ‘Are you joking?’  ‘No, I’m not joking,’ he said in an incredibly unemotional way.  I was expecting a reassuring laugh. But no.  There was none of that.  It was plain and clear and cut into my heart like a big, steel knife and just stuck there.

He said he had to go; he was still with the doctor and she was making an appointment for us to see an oncologist tomorrow. She was off the phone now (I could hear her in the background) and wanted to speak to him again.  We exchanged a quick ‘Love you’ but were both thinking loudly WTF?!

I walked back upstairs, the big, nasty handle of a 6-inch blade sticking out of my chest.   I looked down at it a couple times.  It was firmly lodged and it wasn’t moving.   No blood.  Just stuck there like my own private horror show.  No one else could see it, of course.  Just me and later, as it turns out, Cliff and a few close friends and family could see it too.  But it looked so real to me then, protruding straight from my heart with its nasty, hard handle.  Sitting there.  Waiting to be wrenched out or twisted, or something else to happen.  I didn’t know what.  I just felt this emotional knife sticking there.  It was bizarre.

I sat in a confused, numb daze on the bench outside Grant’s piano lesson.  He was about to finish.   Immediately, it became clear to me that this knife was about to start doing something.  It was about to start hurting.  You know when your body sustains an injury that happens so suddenly and with so little warning that your brain hasn’t caught up?  You can look down at your mangled leg for about three seconds before you start to feel the pain?  It was like that.

Still confused, I started to weep.  I wasn’t sure why.  I didn’t know what five lumps in his chest could mean.  But it didn’t seem like it could be good.  I cried and cried, silently.  Did Cliff say something else after the lumps thing?  I struggled to remember.  He must have.  What was it?  Oh, that’s right, vaguely and quietly he had said a few things it might be.  One was some big, long word starting with ‘s’, which seemed innocent enough and the other word was now flashing like an oversized, red beacon above the fog … ‘lymphoma’.  That’s right.  Now the crying began in earnest.

He said his doctor didn’t know what it was (the lumps might just be tissue), so I managed to hold myself together around the edges.  I hadn’t completely unraveled. I still hoped the whole thing was just an over-reaction to nothing.  I sucked it all up, straightened myself out, wiped my eyes, blew my nose, breathed a lot.  Then Grant and his piano teacher emerged.

From the looks on their faces I did a poor job of pulling myself together.  They both stared at me in shock.  I stood up.  Smiled.  And when it was obvious they weren’t going to say anything, I asked, ‘Did you have a good lesson?’ ‘Yes,’ his teacher said.  But she kept staring.  Could they see the knife? She reached out and rested her hand on my shoulder.  Great.  That’s all I needed.  I started tearing up again.  I apologized.  I was losing my composure.

The thing is, I wasn’t expecting Cliff’s news.  You can’t steel yourself against something you don’t know is coming; against something that is unidentified.  I wanted to smile and walk away, but honesty slipped from me like a birthday-present-secret from a child.

‘I’m sorry. I’m sorry I’m crying.  It’s silly,’ I said to Grant in front of the teacher, my arm around his shoulder.  ‘Dad just told me the doctors found some lumps in his chest.’ The teacher’s jaw dropped slightly.  Just a blank, alarmed look from Grant. I managed to quickly add, ‘But it’s O.K.  It’s probably nothing.  Probably just … nothing.  They’ll send us to a specialist tomorrow and she’ll clear this up.  Sorry.  Sorry, for my reaction.  It was bad timing; he only just rang me.  It’s nothing.’  Still with my arm around Grant, we walked out to the car.

At home now, trying to move through dinner, bath, stories, teeth, tuck in bed.  Numb, shock.  Let’s not be alarmed.  We don’t know what it is.  Could be nothing.  Doing our best to ignore it and sleep.  We’ll see what the oncologist says.

Love, Esser

btw, my favourite cousin used to call me all different kinds of pet names.  A name like Sarah doesn’t tumble easily into a nickname, but he magic-ed up all kinds of charming, quirky tags like Sarahndipity, which was often just Dipity, or sometimes Squara, Clara or Farah.  I also got Saramandar, Stair-a-case and Mog.  I have no idea where Mog came from.  For a while he called me Sariah Sophia Agia Galina – that was after he went to Greece in his gap year.  But mostly I was just Esser to him.  He grew that one up from the seed of calling me ‘The S’, then ‘The S’er’ and finally just ‘S-er’ which, when writing to me, he spelled Esser.  So I guess it was as close to my real name as he ever got.  I never heard him say my name.  But I didn’t mind.  I liked the special ones he gave me better. He died of type I Diabetes when he was twenty-three.  I was eighteen.