26

How do you know if there is asbestos in your home?

You don’t.

If you are in Australia click Here for an information link or call 1800 621 666

If you are in America click Here for an information link or Here.

If you are in Britain click Here for an information link.

The British site, ‘Take 5 Stay Alive’, is quite informative for anyone thinking about doing a little DIY this weekend.

Take 5 Stay Alive

 

26

Waking up again

Sometimes I wake up unaware he is gone.  These are moments of bliss.  My life is whole.  We are together.  Everything is the same.  Then suddenly the guillotine of reality severs my thoughts.  We are broken.  I remember now.

At that moment I travel through a mini version of the macro shock and grief that has engulfed me for 18 months.  And while the shots of reality become familiar the news they deliver to my system remains as potently repulsive as ever… every time it seeps in.

Like falling asleep on a plane and waking up somewhere I wasn’t intending to go.  Each time I awake, surprised to be where I am, it becomes a little less unnerving.   Because, although I boarded a flight for Paris and am shocked to disembark in the jungle I remember this hellish detour happened yesterday too.

And the day before.

And the day before.

 

Some mornings, however, I do wake up knowing perfectly well where I am and what has happened.

But the simple fact that I have woken up… into this reality brings: ‘Aw fuck.  Really?  Really? Am I really still here?  Do I really still have to be doing this?  awwww-shit.’  And up I get.

fuck.

And go make school lunches.

“doing this” means; being a single parent.  being a grieving widow.  being lost.  being detached from the reality that was my life.  And doing my work, which is, now, learning to let go of being tethered to the things I want.  Being OK with floating, unattached to any outcomes, lives or dreams I think suit me.

Letting go of my flight plan.

And then I will be ok waking up in the jungle.

In the jungle

23

Blades of Grass

I was so relieved this morning when I woke up to look out my window and saw that the new gardener had mown the lawn yesterday. Didn’t even know I felt this way until it was mown.

 

Blades of Grass

I never cared much for gardening

though it can be a healing place

where ornamental pears will grow a brick a week

as they did years ago after my brothers death.

Promising growth and, unlike life, never letting me down.

 

But how I wish the grass would now.

Let me down.  Stop growing.  Keep me up.

 

With every inch I watch it reach and ache and long for him.

Stretching toward his heaven. Without a voice it’s still so loud.

‘Come tend me. My gardener. You neglect.’

It’s wild and angry. Messy and lost. I hate it for that.

How right it is.

How it mirrors my state and mocks my strength.

 

I despise the grass growing.

Fundamentally set for sadness, that seems.

Every length off the soil, wounding my heart.

The blades that cut are everywhere.

Blades of Grass

Thank fucking god the gardener came yesterday.

04

03

‘Igor! Bring me my next patient!’

Anne Kidd took the kids for a swim and to watch a video at her house with her son, Baxter, Grant’s friend.  They had a blast.

Meanwhile, this freed us up to attend a meeting with a special radiologist, Bruce Schlieben.  Not one of the more pleasant meetings, but had the most optimistic outcome.

Very strange place where Dr Schlieben works.  It is in an unfamiliar and soulless suburb on the other side of the city.  To get there we had to negotiate a corrugated dirt road that wound around corners and clung to the side of a dry, desolate hill like crust on old toast.  When we finally arrived, I was sure the door would creak open to reveal Igor limping away calling, ‘Walk this way.  The professor will see you now’ over his humped shoulder.  Seriously, it was that strange and the people, both patients and employees, were straight out of a Tim Burton film.  (Guess that makes Cliff Johnny Depp?)

Not exactly an awe-inspiring entrance.

Entrance to Radiology

Everything old, dilapidated, peeling and weedy.

We weren’t brimming with confidence that they could do something for Cliff here.

When we entered, we found two waiting rooms, an exterior and an anterior chamber, filled with a dark menagerie of people saying the most peculiar things. The nurses then entered to tell the patients that, even though they had been waiting three hours, the doctor could not see them — could they return in two days?  What?  And it wasn’t just a once-off anomaly.  They said that to two different groups.  Aagh!  Where are we?

Dr Schlieben collected us from the waiting room and took us back to a teeny, tiny little broom closet of a room, which belonged to someone else, and we sat, almost knees touching, as we began what would end up to be an hour-and-half meeting.

He was quite positive. Though I’d venture to say he was more intrigued with his own research than Cliff’s particular case.

It felt a little like he was rubbing his hands together and saying, ‘Yes!  I can experiment on your husband.  He will make an excellent subject for my research.’

Holy mackerel.

I was seriously worried he was going to strap Cliff to the table then and there and yell out to Igor to flip the switch.

Dr Schlieben talked at length about his papers, his research, the grants he has been promised but not officially received, the people he has met at conferences, and so forth.  Very sciency.  Not very clinical.  But he is the first person that has not said to us, ‘Cliff has six months left.’

Dr Schlieben is convinced, and his research is beginning to show, that his methods of radiation (five days a week for six weeks) relieved mesothelioma sufferers from any signs of tumors where the radiation treatment had been performed.  And if the cancer does come back, it comes back in a place other than where his radiation has been done.  I would rather hear it doesn’t come back at all, but you take what you can get.

What I want to hear has nothing to do with anything that has been said to us since 6 December.

This is all a bad dream and this creepy, spooky, end-of-the-earth ‘hospital’ confirms it.

We got home to find that one of our amazing friends had dropped off some sushi.

Sushi

So perfect.  Healthy, fresh, tasty, light. And just a really nice, quick, ‘thinking-of-you’ lunch gift.

Love, Esser

02

Looking for little Gratefulnesses

Tom crawled into our bed this morning and wrapped his arms around Cliff.  ‘I love you, Daddy,’ he whispered.  ‘I love you, too, Tom.’  And they both fell back to sleep.

Tom and Cliff

The boys unloaded the dishwasher this morning after breakfast without being asked.  They did it together cheerfully and happily.  A lot to be thankful for this morning.  This smooth, happy, working family.

Grant and Leo doing dishes

Love, Esser

01

The First Moment of the Quest for O.K.ness

Extremely hot today.  Boys played with water-balloons in the backyard heat.  Pure Boy Joy.  Tossing and smashing water-balloons.  Keeping cool and having fun.

Leo and the water balloon

If I can just focus.  Focus on what’s here and stop thinking about the imaginary things, good and bad, that may happen in the future.  I am reminded of that classic 22-year-old song by Jesus Jones, Right Here, Right Now.  Here is a link to an Old Jesus Jones video.  The song is better than the video clip.

Water balloons promise cool times

Normally on this momentous day, the first day of the year, we remember the year we’ve just had and look forward to the year ahead.  But forget that now.  I am to learn how to understand that this moment is my everything.  I wonder, on this journey for peace, my quest for O.K.ness, if the panic the future promises for me — which is all I hold in my bag now — will slip out of a hole in the bottom each time I put This Moment’s Peace inside, or if I will have to forage around inside and pull out the panic piece by piece.  Either way I’ve got a lot of work ahead of me.

Fruit Salad with mint

Lara dropped off this scrumptious summer salad.  It’s the little sprigs of mint that took the taste over the top and made it extra special.  Unreal.  I know it’s just fruit.  But it’s so colorful and healthy and when a friend gives it to you, it makes it so much ‘specialerer’ and ‘festified’.

Love, Esser

31

I’m an Outlier on the Bell-Curve of Happiness

7.20 a.m.  I can finally do my job now.  Finally.  Took me three weeks and three days to get here.  But I am confident I can do this now.  My job description: be positive.

It’s what he hired me for.  It’s how I got the job … so to speak.  The job of being his wife.  Cliff is not the most positive person in the world.  Possibly an understatement.  He earned the name Eeyore from some of his in-laws and is a big enough man that sometimes, when he is being just plain overly-pessimistic about an idea, I can even say, ‘Oh, Eeyore’, delicately and kindly, directly to him and he laughs and either explains why he’s being a pessimist (there’s usually a good reason) or just continues being pessimistic but at least he realizes it then and it lightens him up a bit.

I am the antithesis of a pessimist.  Can’t help it.  Born that way.  Apologies, now, to all who are offended by my existence.  But I try to be subtle with my handicap of happiness and try not to take it to the annoyingly, offensively cheerful level but, rather, try to contain all my happiness into an acceptable, general population level that other people can tolerate.

My cheerfulness is so severe that if I were to behave as enthusiastically and cheerfully as I feel, it would appear unnatural.  I’m way out on the end of the bell curve.  I’m an outlier.  I might even be labeled as clinically or chronically cheerful.  Some of my better friends put it very sweetly and use the politically correct term of being ‘passionate’ about things.  I probably outgrew the ‘cheerful’ term when I turned 20.  Now I’m often referred to as ‘enthusiastic’ or ‘passionate’.  I realize being continuously, ridiculously happy is not normal.  And I realize it will freak people out if I behave as I feel.  Seriously.  I know people say, ‘Be who you are’, but I’m not the only person in this world and I like people, so I like to be around them.  They’re not going to be around me if I’m hedonistically cheerful.  It’s just not normal.  And I’m O.K. with that.

When I was twelve years old, I won the congeniality award at cheer-leading camp.  The most cheerful of the cheerful.  Tragically chipper.

Going to get dressed and pick up Cliff early.  Bit of a surprise that I’m coming early.  Gotta run now.

So excited to see him and bring him home.

7.50 p.m.  Cliff in his tower (top floor, fifth from left) in his new blue pajamas

Exterior Riverview Cliff in Window

8.10 p.m.  Even hospital food can be beautiful, if you let it.

Oranges

There was a big, heavy, round orange sitting on his breakfast tray and he said, ‘How am I supposed to eat that?’  It was soooo unappealing.   I cut it into triangles for him and he downed it.  Felt good to get all that vitamin C in him.

10.22 a.m.  Just got home.   Cliff is laminating his med. Sheet.  He has 13 meds.   Here is the list of them.

List of Medicines

Going from a perfectly fit person, who has never taken medication and never been in hospital (except for being born there), straight to thirteen meds every day is … I don’t know … it’s something.

He describes his condition as ‘woozy, vague and thick in the head’ from all the meds and the chemos but he wants to tidy up a few things before heading upstairs to lie down for the rest of the day.  He is sitting behind me at his computer and hiccupping galore.  They say that’s indigestion and part of the nausea.  He took a Maxalon (anti-nausea drug) just before we left the hospital, and they gave him another very strong anti-nausea drug intravenously last night, which will last for five days, as well as Emend and some other drug that starts with ‘A’.

This is seriously hard.  It’s 10.30 a.m. in the morning and I feel like the day should be over.  I’m ready for a story and bed.

1.37 p.m.  Feels like midnight.  So much to do.  Feed myself.  Take the kids somewhere so they’re not always watching TV or playing on the computer.  Just finished making Cliff two turkey wraps and two big glasses of orange juice plus sandwiches for the kids.  Must get myself some lunch and try to ride the exercise bike for a bit.

Love, Esser

30

A Totally Different Kind of Chemo Day than Before. Monique’s New Handbag and The Great Big Cock.

10.09 a.m.  Chemo day today.  Approaching it as just one of the things we do in our life now.  No big deal.

Hoping we don’t get knocked off our calm horse.  Going to try, with all our might, not to.

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2.23 p.m.  The chemo starts going in.

DonatingOranges Chemo Day Montage

I show cliff this photo and he likes it.  Says the chemo looks like it’s glowing.  Hoping it has magical powers.

4.00 p.m.  Cliff and Jessica navigate and contemplate the landscape from his hospital room window. 

Riverview Hospital Cliff and Jessica Navigate the Landscape

We’re trying to see if we can locate Jessica’s house and our house.  I suggest that next time the children go into our front yard with 50 red balloons and release them into the air while we are looking out the window.  Cliff says, ‘Or just put the balloons on a really long string.’

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5.00 p.m.  Teetah and her lovely quilt lady friends made a Prayer Quilt for Cliff.  It brightens up his hospital bed like you wouldn’t believe.  Every time a new nurse walks in, he or she says, “Wow! What an amazing quilt.’

 Teetah's Prayer Quilt for Cliff

A quilt needs the front and the back to be ‘tied’ together.  Nowadays, people often just use a sewing machine to stitch them together.  But Teetah and her quilting friends put a stitch through the quilt with thread but don’t tie a knot, they leave it loose.  That’s where the “prayer” bit comes in.  Prayer quilts are for people who are sick or need prayers.  So family and friends can say a prayer while they are tying a knot in the quilt strings.  That way, all the knots holding the quilt together represent a prayer that has been said for them.  Lying under a blanket that is covered in prayers for you can’t be bad.

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8.30 p.m.  Monique was heading back down to Orkley Island.  I packed a few snacks for her trip, as you do, but I couldn’t find any little baggies in the patient pantry, so I grabbed a (new and clean) glove out of a box on the way back to the room.  I handed it to her full of cheese, crackers and cookies.  She laughed to find a glove full of snacks.  ‘Something for the road,’ I said.  She looked down at it and said, ‘It’s my handbag.’  Hilarious!  We all had a hearty belly laugh.

Monique’s handbag!

 Monique's handbag w/cheese & crackers inside

Free handbag dispenser

Handbag Dispenser

As the chemo was going in and we were sitting, talking quietly in the hospital room we heard a little voice outside our room yell, ‘COCK!’  That was odd.

We giggled a bit but kept talking.

Two or three minutes later another loud, ‘COCK!’

I went out to make Cliff some Milo (kind of a hot chocolaty drink) in the patients’ pantry and saw the source of the cock call.

 Cock!

This little two-year-old boy was running laps of the ward’s circular hallway, burning off some energy.  Every time he came past our room, where a clock hung from the ceiling, he would yell, ‘Cock! Cock! Mommy! Cock!’

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11.37 p.m.  Wow.  This is bizarre.  For the past two days I have been able to deftly jump, in my head, from, ‘Yes, I know he has mesothelioma and the doctors say he is going to die in six months’ to ‘We are so totally going to beat this thing.  Be positive, don’t worry. If chemo doesn’t work, it doesn’t mean we give up hope. It just means chemo isn’t the answer for this particular disease and we are going to go out there and find the thing that does.’  That’s a new skill.

Sort of seems strange.  Like the first time I did a cartwheel and end up standing on two feet.  Feels good and I feel proud.  A lot better than the ground coming up to slam me in the face like every other time before.

In the past three weeks it has taken me, on average, five days at a time to be able to shift from one kind of thinking to the next. It reduced to three days and then two days and now, it seems,  I can do it within moments.  Though, I confess, if I’m truthful, I may not have been allowing myself to fully enter into the abyss each time.  So, when I say I can jump back and forth between the two, it’s probably more of standing, fully, in the positive thinking side (nearly denial) and just tapping my toes on the hot coals of the prognosis side of the situation.

Maybe I can do it fully.

I don’t know for sure.

When we’ve got some peace and quiet over the next two days and I’m feeling strong and have an ‘out’ plan (like coffee with a friend or something) in case I get stuck in the abyss, I might try it and see if I really do have this new skill or if I’m just kidding myself.

I can live with that.  For now.  Not bad after having just had our second day of chemo.

Love, Esser

29

Chemo. We just do it.

3 boys on the carpet playing

8.30 a.m.  Leo, Grant and Tom play ‘pretend’.  Grant and Tom are pretending to be miners. Leo is the mining boss.  Grant and Tom are pretending to go to work but are actually preparing presents for their pretend boss.  They surprise their boss (Leo) with his presents.

So grateful for the peaceful play the boys are enjoying for a large part of every day.  Am I allowed to be proud that we are handling Cliff’s diagnosis honestly with them, but not burdening them with our sorrow and confusion, so they can continue their childhood in the same way they always have?  ‘The Kids’ are the most important aspect of what we do in our daily lives.  And I’m seeing, in reality, that daily life is all we have, all there is.  ‘The Kids’ seem to be going very, very well.  Man, we love them.

I can’t guarantee we’ll continue to handle what comes in the future well.  But so far.  It’s O.K.

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10. 00 a.m. Went for a run.

I’m going to have to listen to my recording of Brad, the chemo nurse, this afternoon as a reminder for all the things we need to remember about the chemo.  There are a lot of things we have to know about keeping everyone safe from the chemo and I’ve put it all out of my mind since thee weeks ago.

When I have the strength, I’ll talk about the cancer, the cause and those gruesome details.  But I need to build more strength before I can go there without getting stuck down at the bottom.  It’s like the muck at the bottom of the sea I’ve been trying to get out of for the past three weeks.  I’m slowly learning tactics to pull myself, occasionally, to the surface for a breath.  So going back down there to grab some muck and hold it up for you to see and explain to you is dangerous. I might not remember how to pull myself out again.

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12.30 p.m.  I noticed Cliff’s hand resting gently on Leo’s back as they sat peacefully eating their lunch together.

Cliff putting his hand on Leo's Back

2.20 p.m.  Grandma Glo and Papa Moose sent a care package to the boys from America.  It had a fun board game in it.

Gifts from America for the boys

 

3.00 p.m. Two little friends, Erin and Izzy made Cliff brownies.

The girls bake brownies for Cliff

4.10 p.m.  Finished de-cluttering my bedside table.

How the Cupboard looked Before the upgradeHow the Cupboard looks after the upgrade

BEFORE                                    AFTER

In the before photo the poor little clock had no room and constantly fell off.  Now he’s a lucky little Vegemite with acres of real estate!

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6.09 p.m.  Just went upstairs to see how Cliff is.  He is resting in bed, reading and listening to music.

I sat down next to him.  He says, ‘I’m worried that tomorrow everything we’ve worked for will come crashing in again.’  He means the calm state of mind we’ve been striving to achieve since the last chemo.  ‘It’s just easier to maintain that everything will be alright and believe I’m gonna beat this thing when I’m not in a hospital bed getting chemo pumped into my veins.’  His eyes were red and watery and his whole body was frowning.  So, I did the coach thing.  I felt like I was in the final scene of The Bad News Bears film.

I said, ‘It’s not going to come crashing in, because this is what we do now.  This is our life, our routine, this is normal.  This is cool, we do chemo.  We’re gonna beat this thing and this is the beginning of us doing that.  This is different than last time.  We didn’t have the skills or experience last time.  We’re not going to lose ground on the mental strength we’ve worked so hard to claw back over the past three weeks; that’s ours.  No one and nothing can put us back in time or take that away from us.  It can throw new challenges at us, but even those will rock us less. We’re good for tomorrow. It’s gonna be O.K.’

We talked more and he said he was better after the pep talk.  He did seem cheerful, happy and confident and he even helped me look for a belt.  (That’s code for … you know.  Once we were in the walk-in-robe together and Leo walked in on us. We only had a few seconds warning but we managed to quickly sort ourselves out and Cliff said, ‘Just helping your mother look for a belt.’ )
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6.45 p.m.  This is what the world’s greatest salmon dinner looks like.

Salmon Dinner on a Heart Shape Dish

Chase delivered it to our home tonight.  I wish I could capture the aroma with a camera.  The greens had the most amazing flavor and I didn’t know salmon could taste like heaven.  But Chase could make an old boot taste like that.

 Guest Celebrity Chef Chase MacPherson in our kitchen.

Chase cooks us dinner

Love Esser,