18

‘Dad got cancer because he didn’t use soap.’ Leo (7)

 

This is us each morning, on our way to school.

On our bikes in the morning

And at school …

Grant playing basketball before school

8.40 a.m.  Grant and his friends play basketball every morning before school. Cliff, PJ and I have tried to bring the kids on their bikes to school earlier in the mornings, since Cliff has been off work, so we can spend a few extra minutes watching Grant’s games.  There is a group of about eight ten-year-old boys he hangs out with and they are remarkably courteous and kind in their sportsmanship.  So supportive and encouraging of each other.   The morning games are one of the joyous moments we are cherishing each day in our new routine.

10.36 a.m.  Now.  Now.  Now.

I can only think about the now.

Made the mistake of thinking about what’s to come, just now in the shower.  Hyperventilated.  Eyes hot, red, and filling with tears.  Then I thought, I’m in the shower.  I’m getting ready.  Cliff is downstairs. We’re going to another psychologist appointment soon.  It is all O.K.  Life is O.K. right now.  This minute.  Focus on the now.  Cliff wants to get all the tools we can to fight this emotional battle.  I’m with him.

2.00 p.m.  Hannah Anderson left a big, beautiful batch of chocolate chip cookies on our porch.

Batch of Chocolate Chip Cookies

4.05 p.m.  Tom’s last day of kindergarten today.  Two lollypops to celebrate.  One for each cheek.  Because ya can.

 Two lollipops in toms mouth

7.51 p.m.  Saw the third shrink today.  I think she’s the last.  We’ll probably stick with shrink #2.  Today was a free session through Cliff’s work.  We went through the whole thing again with her.  She didn’t have much to offer.  Kind of said, ‘Well, you guys seem to be doing the best you can.  You’re doing what I would tell you to do.  If you just want to talk, I will be here to listen.’  Don’t know what will come of that; whether Cliff will want to go there again or not.

8.15 p.m. Tonight, as Grant was getting ready for bed, he and I stepped outside to check the weather.  It’s a nice night.  We stood side by side with our bare feet on the tile porch in silence.  It was calm and cool and good.  We took in the air.  After a few moments we looked at each other and smiled. Then Cliff came down from tucking in the little boys and joined us on the porch.  He and Grant hugged and stood there, looking out at the coming night.

Cliff & Leo

They were about to have their special time, watching 20 minutes of an Indiana Jones film together.  It’s big-guy time.  They both seemed calm and happy.  Perhaps Grant was more effervescent than Cliff, but still, they were happy together. I told them to wait a sec, reached around the corner into my study, grabbed my camera and took this shot.

9.38 p.m.  Not sure if I wrote in here or not about telling the kids.  But we informed the kids about Cliff’s cancer on the very first day.  Without any advice or preparation of how you’re supposed to tell three little boys their Dad has cancer, we tried to explain it as best we could.   We had them sit down with us, Grant (10), Leo (7) and Tom (5).

‘Dad has cancer,’ I said.  And, of course, because they have no experience with cancer, they don’t know what that means.  So we continued and tried to gauge their reaction.  Grant said he’s heard the word before, but didn’t know what it meant other than being sick.   We explained: Dad has five lumps inside his body that shouldn’t be there.  It’s making him sick.  It’s called cancer.  Dad didn’t catch it from anyone.  You can’t catch it from Dad.  He can’t give it to anyone.  It’s not because of anything Dad did.  It’s not because of anything you did.  It’s just something that happened inside him; because of the way he was built when he was born. How do you explain genetic predisposition for the susceptibility of cancer to a five year old?  When you’re in shock?  That went pretty well.  Tom and Leo climbed all over their chairs and then ran off.  Grant sat there and asked, ‘Can I go back to my computer game now?’  We said yes.

We weren’t scheduled to meet with a psychologist for another ten days but we thought they had to know right then because they would be hearing the grown-ups around them mentioning the word ‘cancer’ and our whole world had just changed and they deserved to know.  They also needed to know why the phone rings all the time now, why Mommy sometimes cries a little bit at story-time or dinner-time and why all the amazing, beautiful food appears on the front porch.

We told them everything … except the prognosis.  Right now, that’s not going to help them.

The next day I talked about it a little more to Leo to see how much he had absorbed and if he was feeling O.K. about it.  He said, ‘Mum, I think I know how Dad got it!’  ‘You do?’ I asked.  He said, ‘Yeah!  I don’t think he used soap.’

We’ve been watching Grant to see how he has been travelling with the news and our re-adjusted lives.  He seems himself.  Smooth.  Calm.  Alternately arguing with and loving his brothers, just as usually.  About a week ago, when the little boys had gone to bed, I asked Grant if he had any questions about Dad being sick.  ‘Not really,’ he said.  ‘O.K.,’  I said.  Then added, ‘You know, we will always be honest with you.  Right now, Dad and I really don’t know what is going to happen, what this cancer means or how it is going to affect our lives.   If we knew what to expect with this, we would tell you.  I’m sorry, but I think every day is going to be different and we just have to deal with each day when we’re in it.  We will always tell you what is going on as much as we can.  And you can always ask us anything.’

For the first three days Tom told a lot of people, ‘My Dad is sick.’  His teacher, the lady in the shop, another mother at school, etc.  He is bouncing this new information off the world to see what he gets back.  What do they think it means that his Dad is sick?  What should he make of it?  He’s checking the world’s reaction to help create his own opinion.  He has stopped doing that now.  He worked out himself that it’s not such a bad thing having a sick Dad.  It means Dad is around a lot more and takes naps.  Nothing wrong with that.  And Tom’s friends seem to invite him around to their house to play a lot more.  And the Most Amazing Food and Treats magically appear on the front porch.

We will continue quietly watching and communicating with the kids.  We are aware of the changes in their lives and are sensitive to their emotions.  We’ll deal with issues as they come up.  Each child will direct us in what they need.

Cliff didn’t have the greatest day today.  He’s feeling more fatigued than usual.  He was in bed all afternoon.  He seems to be coughing a bit more.  Or am I more sensitive to the cough?  He’s gone to bed now.  I should follow, too.  Just have some fires to put out in my work email first.  If I can.

Love, Esser

17

Will a pattern establish itself or will it just be perpetual, random chaos?

I can hardly express how much I long for some pattern in our life, how much I grieve for the beautiful, graceful monotony that was our life before.  How hard I look now for something that I know will not come … something that has happened before, something familiar. I dissect every moment in search of some sense that the chaos will not reign.  There is no sign.  And so, I’ve decided to change the rules of what makes a pattern.

Now, in my world, a change signals a pattern.  All these crazy, uncomfortable things are always the beginning of a pattern.  If it’s a pattern, it’s something I can get familiar with, something I can adjust to, something not so scary.

O.K. I know something has to repeat itself at least once before it becomes a pattern, but the human soul needs familiarity so desperately, I kid myself in order to function.  I pretend, every time some strange, new thing happens that it is the beginning of the new pattern.  Phew.  Instead of how I really feel, which is, ‘Holy fuck!  What’s this?  How the hell did this get in our lives?  How is this happening now?  What do we do about this?’

I know these wild, crazy changes are not patterns.  But I cling to the hope of it.

Text Break picture of oranges

7.38 a.m. Leo brought me a gift in bed this morning.  He made me a rocket ship.

A gift of Lego for Mum

I seem to have been going through a period of shock for five days, then a calm disbelief, then jolted back into shock again.  The shock started yesterday around midday and is still, unfortunately, here and feels like it’s settled in for a while.

Text break

8.01 a.m.  Cliff is getting the boys to help empty the dishwasher and set the breakfast table, while I make a secret Santa present for Grant’s school Chris Kringle tomorrow.  Cliff’s strong with the boys.  They don’t want to empty the dishwasher, but they do.  He’s firm and fair.  I can’t be that firm.  How is this going to work?  How am I going to teach these boys anything?  How are they going to grow into good men like their father?  There is only shock and fear in my head today.

Text break

12.00 p.m.  Grant’s friend, Jim, picked Grant up for an amazing day of fun at Jim’s house and Kyle Coppin’s house.  Our friends keep rescuing us with lovely times and gifts.

Text break

3.30 p.m.  Aunt Laura is here putting on the most magnificent puppet show for the boys.

She is a storyteller by trade.  She came up with the idea of bringing a little show around for them this afternoon.  It is incredible.

Aunt Laura does a puppet show

Talked to Kim earlier.  She gave me two great ideas for managing fear and panic.  Reboot yourself.  You go to a quiet place and shut down all your senses, cover your ears with your hands and close your eyes.  Slowly, one by one, you get back in touch with your senses, feel what your body is doing, smell what’s around you, uncover your ears to hear the sounds, then open your eyes.  She also said you can do seven ‘sighs’.  Sigh out loud seven times.  She says that usually brings her back to the moment she’s in now and stops her from worrying about the future or events she can’t control.  Such a clever friend.

My parents, PJ and Teetah, worked hard helping us all day.  Our gratitude is larger than it is possible to explain.

Love, Esser

16

Tune in tonight at 8.00 p.m. to watch how your husband will die.

6.45 a.m.  Woke up this morning and, walking down the stairs, was greeted by the beautiful Christmas tree that Douglas and Dianne organized, brought over and set up for us the day Cliff got home from chemo.  We are so grateful to them for doing this.  I had planned it for this weekend but there was no way I was going to get it done and I didn’t even mention it to D & D.  They just thought of it on their own and did it for us.  Man, we are lucky.  It brings so much joy into our home today.  It’s such a festive tree.  And I am so grateful the children don’t have to miss this Christmas tradition.  Without D & D doing it, it would have fallen into the too-hard basket.

 Christmas Tree from D&D

1.28 p.m.  Sock drawer.  Again my brain is full.  It’s all coming at us; big and fast and unfamiliar.  I have no more emotional room for anything.  I just need to stop more stuff from happening to us and sort out what’s happening now so I can be ready to accept more.  Because I know there is more coming, it keeps coming all the time.  I’m just not ready for it.  There’s no room.  Where do I put everything in my head?

9.57 p.m.  I was very tired from the party I had to take Tom to this afternoon.  A three-and-a-half-hour kindergarten party at the kids’ traffic school for one of his best friends.  It is the world’s greatest place for a kids’ party.  But it just … about … killed me.  I lasted two hours, then retreated to the car.   I felt sorry for everyone else.  Everyone is so nice.  I kept trying to make light conversation, so I wouldn’t gloom out the whole party, but everyone wanted to know the details of the cancer.  I’m O.K. talking about it.  It actually helps me process it.  But it just didn’t seem to match the mood of the ice-cream cake.  So I slipped out for a while.

 Kids party at Traffic School

Tonight I just wanted to flop down on the big, blue chair and watch a movie with Cliff.  I turn on the TV and there’s an Australian documentary (50 Years of 4 Corners, a 60 Minutes-type program) about all the people dying in Australia from asbestos in the asbestos mining towns!?  WTF.

Cliff called out from the study, ‘Don’t watch it. Let’s just watch a movie.’  So I had my parents tape it.  I doubt I’ll ever watch it, but I confess I let it be on our TV screen for almost ten minutes.  I was morbidly wondering what this documentary might tell us.  What do they know about this evil, ugly, deadly beast that entered our lives 12 days ago?  I’d never heard of it before then and now there is a whole program about it in our living room.  Would it help us to face the monster if we learned everything we could?  What if they know something we need to know; something that may help us avoid some pain and suffering, or something that, without knowing it, would hurt us more?  After a few minutes of widows detailing the horrors of the death asbestos causes, talking about the ‘cruel, cruel’ disease and how ‘no one deserves to die like that’, I decided there was nothing here that was going to help us.  I switched it off.

Also, I was worried Cliff might be able to hear it in the other room.  But he wasn’t listening.  He only operates on Full Denial Mode.  I’ve got a Denial Dial that moves up and down through different levels of denial.  But I support Cliff 100 per cent in his Full Metal Denial, because that’s what he wants.  He once told me he ‘has to be that way’.  And so I do everything I can to let that be the way his world is.  And this is how the situation looks to him:  he will get better. This is a temporary condition that will soon be sorted out.  It’s a horribly bad mistake, he doesn’t have mesothelioma, there is some other fluky explanation for the lumps in his chest and whatever fluked them into his body will fluke them away.

No.  This program was not going to help his denial.

So we tried to watch a fun, romantic comedy, to distract ourselves but just got too tired and sad and, as much as we tried, we couldn’t get caught up in the story’s ridiculously light, farcical woes.  We were too horrified and shocked by our own reality, which kept slapping us in the face when we compared it to what was happening on screen.  We switched it off halfway through.  Now we’re going upstairs to calm and settle down and go to sleep.

We started a new policy, just between ourselves, of no deep discussions or talking on the phone with friends/family after 8.00 p.m.  It helps us stay calm when we’re tired and settles us both.  If there is nothing ‘new’ after 8.00, we can use that time to wind down from all the big shit that keeps happening each day.

We found out the hard way that ‘new stuff’ in the evening can often stir up more big stuff and, when we’re weary from the day, we don’t handle new stuff so well.  It becomes almost impossible to fall to sleep.  So, like toddlers, we have quiet time after 8.00.

 Chocolate Cupcakes with candy bananas on top

These appeared on our porch this morning.  Leo tells me one of his friends’ mother said, ‘If there is anything I can do for you, just let me know.’  Leo replied, ‘I’d really like some chocolate cup-cakes with candy bananas on top.’

OMG.

Love, Esser

15

Address. Resolve. Or let go.

4.20 a.m.  Still on the electric fence.

Can’t sleep.  So tired.

Can’t eat.  So hungry.

Can’t think.  So much to sort out.

6.25 a.m.  Messed with the photos.  Will try to eat something now, then go lie down next to Cliff.

Breakfast

This is my tea cup and my cereal bowl.  Part of my ‘365 grateful’ project, taking a picture of something I am grateful for every day.  Grateful I can hold something in my tummy without being sick this morning.

7.07 a.m.  Will go back to bed in a few moments.  Just a note that I liked the new psycho-onc (psychologist specializing in oncology issues) we met with last night.   She comes to the house.  Kinda cool.

I was calm, composed and probably appeared to hold it together.  Until about three-quarters of the way through our appointment, when she explained something and I sat, trying not to cry, until it was so obvious I was trying not to cry that she asked, ‘Do you want to share what’s on your mind?’ I tried to speak but just cried.

I gathered myself up, thought she deserved an explanation for the tears, and told her she had just made something clear to me that everyone has been saying to me all week.

Everyone has been saying, ‘Be in the moment.’  I sort of know what that means, I think.  But it was also a scary thing to talk about, because it seems to mean, ‘Enjoy right now, because you are not going to have Cliff later.’  So I’ve hated that expression this week.

But the new psycho-onc, Liz, explained the ‘now’ is a safe place to be.  She acknowledged that the doctors are telling us there will be a lot of hurt in the future.  But she assured us that we don’t know what the future will bring.  So why go there?  Why scare yourself or hurt yourself?  Be here.  Be kind to yourself.  You need the strength.  It’s safe here.  You are O.K. here.  You are O.K. now. You can do things here.  Now. You can’t do anything about things you don’t know about.  You haven’t yet built or acquired the tools you may need for the future.  Be here.  Be now.

Then we talked about taking care of things for the future.  Because when you have children, how can you not think about and plan for the future?  Cliff and I have been talking about creating lasting messages for the kids at certain points in their lives and are wondering how we do that when we’re not supposed to ‘be in the future’ and Liz explained, ‘That is not living in the future, that is simply taking care of things for “peace of mind”.’

Part of her psycho-onc McHappy Meal (the things she tells everyone) is: ‘There are three things you can do with your issues.  Address.  Resolve.  Let go.’  If you have an issue, you have power because you can choose which of those three things you want to do.

Cliff wasn’t as convinced about her as I was, I don’t think.  But he did like her better than the first.  I think we have another appointment next week with a counsellor from his work.  He wants as many tools as he can get to fight this emotional battle we’ve been thrust into.  I want the right tools.  So we will meet with these professionals and choose the one or ones that are right for us.

8.30 a.m.  More quiet.  More calm.  We are grateful for this huge, healthy, quietness the children enjoy.

 kids playing peacefully on the mat

Love, Esser

14

Stuff a sock in it.

Tom came in to our room.  He crawled in bed for a warm little hug.  Then he said, ‘I’ll get your slippers for you, Dad.’

Tom has strep throat and is on antibiotics.  He blew his nose on a tissue and said, ‘We’re both sick, Dad.’  Then he put Cliff’s slippers on for him, gave him a big hug and said, ‘I love you, Dad.’

Tom looks after Dad by getting his slippers ready and hugging him.

8.45 a.m.  On the bikes to school.   A beautiful, warm, sunny day.  Just perfect.  Not too hot, not too cold.  Tom rides on the tag-along-bike attached to the back of mine.  Cliff is with us on his bike.

‘Which way is north, Mum?  ‘That way,’ I point.  ‘Which way is east, Mum?’  ‘That way,’ I point.  Then Tom says, ‘Santa Claus comes from the north and the Easter Bunny comes from the east.  Who comes from the west?’  ‘I think it’s the Wicked Witch,’ I say, hoping that’s not too scary.  ‘And the ….’  He couldn’t remember the other direction.  ‘The south?’ I remind him.  ‘Yeah.  The south.’  ‘Um.’ And as I’m thinking, Grant calls out, ‘That’s where they make South Park!’

Now you know.

11.00 a.m.  We met with Monique.  Was going O.K., then I wanted to throw up.  It was just that my body and brain shut off.

Cliff and Monique had been talking cold, hard details about the coming days and how to manage our new life.  It was an important discussion and one that was scheduled for five days earlier, but which we weren’t able, emotionally, to agree to until now.

They are both logical thinkers.  And talking about all the logistics of the changes that were about to occur, and that are now require in our lives, without acknowledging the shocking and devastating emotions that accompany each change to our life was too much for me.  After about an hour in I just felt ill and my brain stopped.  I couldn’t think any more.

Monique asked me a question and I just looked at her.  ‘I don’t know,’ I said.

My brain went blank.  It was full.  And because it couldn’t hold any more, some other part of my brain recognized that and triggered the ‘door’ switch.  So that nothing else would get in, a big, four-inch-thick steel door slammed shut with a ground-shaking thud.

I tried really hard to open the door and let Cliff and Monique push more info through.  But it wouldn’t budge.  Nothing else was going in.

I felt like a neglected sock drawer; so full you can hardly open it. I needed to process all these unmatched, unrecognisable things that were happening.  All these changes Cliff and Monique were talking about.  I needed to stop new unmatched socks coming in.  Better tip the drawer out.  Get down on my knees.  Pick up each new sock individually.  Examine how it looked, find where it began, where it ended, how it affected our lives.

Once I did that, then I could understand how to match each new sock (each new decision we had to make) to certain areas of our life.  That way I could see how they were going to change our life and what (if any) ‘management’ or crisis control strategies might be needed, due to the potential effects of each sock and its relationship to its partner sock, which currently occupied my brain drawer.  But the new socks kept coming in so thick and fast, I couldn’t process anything.  I kept trying to accommodate all the information that doctors, lawyers, family members and myself had offered.  I kept trying to calmly receive each new sock because it’s what I knew I had to do.

But sometimes my brain just shuts off.

Note my real sock drawer, upstairs in my bedroom, is nothing like my tidy, brain sock drawer.  My real drawer is a hodgepodge mess with only a top layer of wearable socks, then three layers of unmatched socks, undies and pantyhose that have been pressed into oblivion and will start producing crude oil soon, they’re that buried.  If you drilled down through each layer, you could produce a revealing core sample of my sock-buying habits year by year.  If my sock drawer core sample were in a museum it would look like this:

2010  Target socks

2009  (no socks purchased)

2008  (no socks purchased)

2007 Grocery store socks

2006  Department store socks

2005 (no socks purchased)

2004 (no socks purchased)

2003 Hand-me-down socks from Mom

2002 Christmas gift socks

2001 Kmart socks

… because that would be so interesting.  King Tut and Sarah Jane Washington’s Sock Core Sample exhibits coming to the metropolitan museum this summer.  Don’t miss it!

1.30 p.m.  Jessica drove me in to get my will and Cliff’s will out of the safety deposit box.  Felt sick the whole time.  I can’t believe this is happening.  I can’t believe I have to be here, doing this.  Glad she drove.

3.45 p.m.  Veronica Salter dropped by and gave me a beautiful little iron fairy today.  The instructions say to sprinkle the fairy dust on her, which came in the hessian sack she was wrapped in, which I did instinctively.  The instructions also say to make a wish.  I wished for Happiness and Peace.  It was hard to do.  Because I can barely dare for any hope of that.  All hope seems ripped away from us.  It was difficult to be asked to make a wish.  I feel all I will be is broken and disappointed.  But our friends are trying to show us the glimmer of some small, faint, yet promisingly beautiful thing in the distant corner and telling us, ‘That is hope and you can have it.’

3.50 p.m.  Today when we came home from school, there was complete peace and a solid, quiet joy in the house.  Leo and Tom played on their car mat together for nearly an hour.  Quietly.  Happily.  Cliff slept upstairs.  Grant rode his skateboard down to the $2 shop to buy a Santa costume. He wants to be dressed up for the carols night tonight.  PJ plans to accompany him on his bike.

Peaceful and Playful on the car mat

I am so grateful for this moment.  It is one of the many great gifts our family received today.  It feels that, if the boys can do this, can have these natural times of peace and joy together, where they feel so obviously safe, at home, confident and calm, then we must be doing something right.

Celine Jacobs, Jessica Houghton and Mary Douglas all nurtured and protected us at the very public school Christmas concert.  Cliff said he felt loved and cared for and, as he was drifting off into a warm comfortable sleep, added he felt a calm peacefulness from the carols evening.

I have so much gratitude for the people in our lives.

Grant (the Santa with a sack on the end there) was very pleased with the Santa suit he bought himself at the $2 shop.  He and Leo both sang beautifully and did a wonderful job the whole evening.  Tom had a happy time playing with the other little siblings in the school yard.

7.00 p.m.  I told my friend, Veronica, at the carols night, I have so much gratitude now.  Our lives have changed dramatically in one week.  I don’t know what to do with all this gratitude.  Veronica said, ‘Just have the gratitude.  Don’t do anything with it.  Just hold it.’  I think she was saying I could use it to make us stronger, while this terrible new life is making us weak.

Love, Esser

13

Giving vs. receiving

Chicken Pot Pie, Brownies and Veg

Chicken pot pie, veggies, and brownies delivered to our front porch by Melissa Ross (the chicken pie was whole when she gave it to us  LOL).

And what do I do about all these varied and overwhelming gifts of kindness?  Everyone is ringing and coming over and offering to help and bringing us food and thinking of creative ways to show care.  It’s out of whack.  Normally I try to operate with my giving greater than my receiving.   I can manage that.  I’ve never been that smooth at the expression of gratitude; I tend to overdo it because I am so truly, incredibly grateful for everything anyone does, that I fear it comes across as insincere.  But mostly, I always feel I should be the giver, being so fortunate in so many areas of my life.  So I haven’t allowed myself much practice at the expression of gratitude.  Or maybe I’m just a stuck-up bitch who should have been more grateful to others but hasn’t been.  And it’s about fucking time I wake up to myself.  That’s always a possibility.

Muffins made for us by Hannah. x

Home-baked banana muffins from Hannah Anderson.  Hannah Banana Muffins.

Another problem I’ve identified; I’m accustom to thinking of gratitude as a debt.  If I’m grateful to someone for something, I must do something to show them my gratitude and preferably pay them back.  So it has always felt heavy; gratitude.  Gratitude drives duty.   I could be wrong, but I’m wondering if this is a different kind of gratitude, the one that is piling up now, and whether I can manage it in a different way than I’ve managed it in the past.  How can I process it?

Do I see it as something else?

Lemon Slice on a plate

Vanilla slice from Glorious Gloria Lawson

It was really hard for the first nine days to accept the multiple things people offered to do for us.  I am quietly independent.  But since I’ve seen how it has helped remove some of the burden, allowing me to help Cliff and the children in other ways, it has become a deep, genuine and pure joy to receive these gifts.  I’m learning how to let others help.

I confess, sometimes it can take energy to give thanks when I don’t have any spare.  But in my mind, there is no option, you just do it.   I realize I can’t get all the gratitude off my heart scale; it may never balance.  It’s enormous.  And mounting every day with everything that friends and family, nurses and doctors do for us.  But I won’t stop trying.  Ever.

Everything — good and bad — is coming at us so thick and fast.

 Beautiful roses

Beautiful flowers hand-delivered to us from Sue Holden.

12.42 p.m.  What I can’t believe is how intuitive our friends and family have been.  I am just listening to a message now from my sister-in-law, Laura, who said she wanted to give me a Christmas present of a voucher to get my hair done.  I’m going to get my hair done tonight when the kids are in bed.  Been scheduled for weeks.  I considered cancelling, but … when am I going to reschedule it for?  When is this going to be better?  Do I let myself go until, emotionally, we get better at handling this?

I texted my Dad this morning, who was walking Leo to school while Cliff and I rode ahead with Tom to the kindergarten.  I asked him to straighten Leo’s hair with his fingers because I had forgotten to brush it.  Dad texted back, ‘I just did that.’  It’s Good Weird.

Got a text from Monique the other morning asking if I wanted her to ring Rachael (my brother’s widow) to tell her.  I was on the phone with Rachael that very second telling her the news.  More Good Weird.

And they’re intuitive about offering and giving me things I don’t even know I need.

Calls from friends just to check in, mean the world to us.  Just listening to a message from Melanie Stanton to say, ‘It’s hump day.  Just seeing how you’re going.’

Chase just left a message saying she is going to Big W and could she get me anything.  What do they sell at Big W?  I wrote back and said, ‘XOXO.  Thanks.  I can’t think of anything.  Actually.  I can’t think.’  Too hard to ask what they sell there and wonder if it’s O.K. to ask her to get something for us.  I don’t know if we need anything.  I just don’t know.  The ‘Too-hard Basket” is getting full.

2.45 p.m.  In the shower I think, ‘What the hell?  How can this be happening?’

3.00 p.m.  Figured out Cliff might be having an issue with semantics.  As I am getting dressed to go to the school pick-up, we discuss the word ‘accept’.  He does not accept the doctors’ prognosis.  But he thinks if he ‘accepts’ it, he has sat down, folded his hands in his laps and laid his head on the guillotine with a big sign on his back saying, ‘Take me.’  I try to explain to him that accepting can have two meanings.  You can accept that this is the situation:  ‘Yes, I understand what the doctors have said.  I accept that is my chest in the x-ray.’  But you don’t accept there is no chance of hope or a miracle.  He thinks ‘accept’ = ‘complacency’.  Will work with oncology pyschologist on that on Friday.

Love, Esser

12

Got drive-thru, pre-packaged pseudo psychology? Check!

7.58 a.m. Cliff asked me how I was doing this morning.  And I said, ‘I seem to fall off some ledge every morning.  I’m used to waking up and seeing a huge, exciting bright future and getting on into it.  But this last week I wake up and see a crippled future with questions.’  He said our future is still huge and exciting and I asked, ‘How?  How is it huge and exciting?  All I can see is a broken future and I don’t know how to fix it.’

We have our first Oncology Psychologist appointment today at 10.00 a.m.  None too soon.

5:30pm   Celine Jacobs delivered a massive lamb casserole, oatmeal slice biscuits (cookies), home-grown eggs from her chickens and a lovely card.

Aaaah-mazing.

9.30 p.m. I finally have a minute to tell you about the Oncology Psychologist we met this morning.  She was terrible.  Twitchy, nervous, hyper, impersonal.  We got her standard McHappy Meal package of two meditation CDs and a few standard lines, which she tells us she tells everyone:

1. Your cancer is like a jagged stone.  Talk about it.  Talking about it smoothes the edges until you have a round, smooth stone to live with.

2. Write all your worries in a cheap little notebook before you go to bed.  Then rip them up and throw them away.

She asked how our relationship is and Cliff said, ‘We’re more in love with each other than ever.’  And her response was, ‘That’s typical after you get a cancer diagnosis.’ She didn’t get it.  Our life was perfect until last Tuesday.  Perfect.  And we knew it.  We appreciated it.  We loved it.  It totally and completely rocked.  We loved each other, the kids, our life, our careers, all the little things and all the big things.  We didn’t need this cancer to make us grateful.  It just makes us sad.

Having said that, I do feel grateful that we’ve been given 6 to 12 months instead of a car accident.

I also feel grateful our children are O.K.

I also feel grateful that we all have a warm, soft, safe bed to sleep in at night.

I feel grateful that my parents are here to help us and we have so many amazing, wonderful friends.

I could go on about everything I am grateful for.  And perhaps that makes me sound ungrateful for my darling love, my beloved husband, as I try to focus on how lucky we are, how it could be worse.  Do I need to tell you that’s not how it is?  Do I need to tell you he is my everything?  He and the children.  I assume you know instinctively, because I write about them, but maybe I have to say it: our family, as we know it, is the centre my world.  And now I am told my world will crumble.

One cannot live without hope.  The gratitude for what we have is the only hope I can see. It’s manufactured hope.  I know.  Gratitude for what we have is an optical illusion, a brain trick that helps me reduce the size of the catastrophe.  But it’s the only glimpse of the notion that there may be some way to cope.

I wish I did not need tricks. But for now … I’ll take a trick.

Going for a big, good night’s sleep.  I need the sleep to be as calm and clear-headed as possible for the children and for this daily battle.

But before I go … my Gratitude Photo for the day is from this morning.  It’s Tom and me.  He always stumbles into our bed in a sleepy daze about ten minutes before it’s time to get up.  Ten minutes of the world’s calmest, sleepy bliss.  The depth of the difference between this moment and the rest of my day is not lost on me and I appreciate this moment fully.  I always have appreciated moments like this, fully.

That last sentence was for your benefit, Cancer.  You do not make me appreciate my children more than I always have.  You are not good for us… Go Away.

Love, Esser

11

365 Grateful. Try it.

10.00 p.m. Went walking with Chase MacPherson.  Bless her magical soul.

It was a scary thing to do, walk with Chase.  Because she asked me the day before if I would walk with her at 8.00 p.m. after the kids were in bed.  Sounded like a good idea at the time.  A little exercise and some therapeutic talking around the new issues we face.  But I could tell, just about the time I needed to leave, that Cliff wasn’t feeling well, emotionally.  He was silent.  And staring at me.  He looked worried.  Scared?  Upset?  Pleading?  Maybe I was imagining those things.  I asked him if I should stay home.  He said no.  He wanted me to go.  I hadn’t done anything without him for eight days.  I just wanted to be near him and he just wanted my company.

I’d tucked the little boys into bed and Cliff was watching Harry Potter with Grant, a tradition they started a few months ago.  After the little boys go to bed, if Grant has done his reading and is ready for bed himself, he and Cliff watch a few minutes of the film together.

Cliff seemed to be in a safe place physically.  But emotionally I didn’t think he was good.  He asked where we would walk.  I said probably down on the bike path.  That made me worry.  If he was happy for me to go, he would have just said, ‘Goodbye.’

And it was true. Later he told me he was feeling dark clouds looming and moving in on him.  I did go walk with Chase (who is an amazing new entrepreneur mommy friend I met through Tom’s kindergarten ten months ago), because we had set it up days before.  And also because it was now past the time I should have left, so I couldn’t call and cancel when I was already late. I suggested to Cliff that his brother, Brian, could come over.  But he said he was fine and assured me I should go.

But halfway through our walk, I felt a panic.  The kind of panic you get when you have your first child, the baby is three months old and you’ve gone to your very first film with your husband and you’ve left the baby with a sitter … You just want to be home.   Right now.

So we cut the walk short and I came home to check on him.  He had been talking to his sister, Monique, for a long time on the phone.  That helped him and he was sad but feeling calm again.

On our walk Chase told me a quote she had read: ‘There is something beautiful in every day.  Even though every day isn’t beautiful.’  She told me about a project called ‘365 grateful’ in which you take a photo every day of something you are grateful for.  The aim of the project is to identify the beauty in your life when it feels as though there may not be any at all.

She encouraged me to take photos of the little things in each day I am grateful for.  I’ll try to start doing that.

Here’s a photo I found.  It expresses how I felt about our walk.  I’ll start taking my own.

Hand holding a leaf heart.

Love, Esser

11

The Great Inflatables

6.00 p.m.  A giant, adamant anchor has clamped onto Cliff’s ankle and because we are connected, I’m caught in its chain.  We sit on the bottom of a black, alien sea.  Our friends are life vests.  Big, orange, jolly circles around our middles.

When we were told he had cancer, we sank, at breakneck speed to the bottom of the black, black sea.  We sat there.  Shocked.  Staring at each other but we couldn’t even see our own hands.  It was too dark.

We quickly found that if we reached out, we could feel the outline of the other.  We grabbed one another and held on tight.  We drifted up a tiny bit.  We were just as puzzled about the drifting up as we were about the sinking down (since we’ve always sailed on top of the sea in a bright, shiny boat in the sunshine).  Was it a wave that lifted us a little?  Was the anchor getting lighter?  And it kept happening.  Again and again, a little bit.  This tiny up and down.  My up and down got more up and downy and until I now sit; just a little higher.  It’s what we do for each other.  Our togetherness raises us: for no other reason than we get strength from each other.

I discovered today that the knife that has been sticking straight out of my chest has a hinge.  I never knew that.

I took a shower to get ready to pick up the kids from school.  As I was drying off, I looked down at the massive knife and saw a little, flat round button.  Hmm.  Never noticed that before; I wonder what it does.

I pressed it.  And I could feel the handle loosen a bit.  Odd.  I wiggled the handle.  Nothing.  I pressed the button again.  Yes, it definitely did something with the handle.  I pressed it but held it this time while I wiggled the handle.  Woah!  The handle bent.  It went right across my chest at a right angle, flush with my skin pointing toward my right shoulder.  Wow.  Cool.  That’s better.  Over the past seven days I’ve kept knocking into things with that handle sticking out.  And people kept easily, though accidentally, bumping it when they tried to hug me or put their arm around my shoulder.  Then it would hurt and start to make me cry a little.

This was going to be much more convenient, having it tucked in under my clothes.  I finished drying off.  Got dressed and was relieved to see in the mirror, that if you were to look at me from a distance, you couldn’t see the slight bump under my shirt now.  Today I would venture, for the first time, into the school yard with the other parents.  I would wait, like a normal person, for my children to exit the school.  I could at least pretend to blend in now.

The pain is just so real.  So huge.  So palpable, it almost feels like a thing.  A knife.

I wonder if, eventually, I will find there are two buttons, one on either side of the knife handle, which removes the handle altogether.  The knife will stay lodged in my chest forever.  I know it isn’t going anywhere.  These things never leave you.  But perhaps one day my pain won’t be so visible from the outside any more.

Love, Esser

11

The Accidental Circus

Circus Sign

The accidental circus: it’s our house and our lives at the moment.

4:45 p.m.  Phone ringing all the time.  Friends and family coming to help and stopping by with food and gifts of cancer-cure books.  Kids finishing end of school year activities and trying to juggle that with chemo, doctors, nursing Cliff, psychologists, lawyers, bankers … it goes on and on this strange, new, unwanted craziness.  But everything we do, every choice we make has one purpose — to keep life as calm and normal as possible for the children.

So I try, in absolutely every way, down to the sort of carrots they eat, to keep life calm and predictable for them.  Because some things I can control.  But some things, like Dad being sick and in bed some days and being well other days, are going to be different and changing all the time.  And I can’t control that.  But if Cliff and I can minimize the impact of all these other changes caused by cancer … then, we are winning.  Winning where we can.  Whether we win the game or not, we play every second of it like we will; with commitment, passion, good will, agility, strength and teamwork.  We conduct ourselves in a way that always opens the door for the possibility that our best will be good enough.

Love, Esser