Month: October, 2009

Bloom'ng Chair

Woke up.

Got out of bed.

(Did not) drag a comb across my head.

Found my way downstairs and drank a cup

And somebody spoke and I went into a dream…

share shock.

It was a gathering of Yellow Hearts even if they didn’t know it. A singular experience to walk down University Ave with no honkers. Imagine a city without cars.

Imagine a world without Cancer.

David Bloom was at the MM5K Walk. Thanks to him we members of the Myeloma Club will survive longer. Establishing this research chair for MM at Princess Margaret is a talisman. A protective charm. It’s the first in Canada and will buy me time until the cure.

sticky me.

In the meantime…

As David said.

In the meantime.

We don’t just stick around.

We thrive.

Don’t you get into a cab Mister! Unless you’re paying.

David made a crack that he’d have to do the midnight shift, driving a cab from now until December to take over take my lead raising money for the chair. This from a man who’s already raised millions.

Funny. MM makes you hilarious. At least to ourselves

I had a nap attack after the walk. Is four hours still considered a nap? Right now, I’m taking 10 little oval shaped pills. Last dose of ‘devil-dron’. That’ll perk me right up.

Stand back Bobcat!

I have a hunch.

Time to spill all our colours. And remain defenceless.

This MM marathon show me when you spill, the danger, it stay away. It will not come.

Shape shifting and mind altering. On and off Dex.

Sexy enough yet? Sexy Cancer will woo the cure.

Thank you Team Myeloma: the dashing Shane Saunderson, super-Noni, Dad, Bernadette and Alan and Bernie. The original Myeloma Outlaw Cindy Leder and David and Molly Bloom. Moving to meet Manuela and other Yellow hearts at the walk. Thanks for being there.

Thank you Bobcat. For always being there.

One paw around me to keep me symmetrical. Always.

Thanks to all the Yellow hearts. Burst of Yellow pushed us over the finish line.

Vital push.

I couldn’t cheat. You get a chip.

400+ Myeloma Outlaws. Over 12,000 marathoners out there today.

Don’t test for steroids though.

I’d have to confess.

Much more later.

And you can still support the chair. We are raising money until December: http://pmhf3.akaraisin.com/Pledge/Participant/Home.aspx?seid=2489&pid=172578&mid=9

Your support pioneers me into new territory. Thanks for open wallet and spilling your colour. Spill and blend.

You move me.

You move yellow and marrow.

damn. I’ll work on another phrase than ‘thank you’.

need a yellow language. To give the lovely bones a way to speak.

In the meantime…

Thank you.

And BRAVA.

PS This one’s for Hanan. I promised 3 blogs before she and Shamimi arrive in TO. What have I unleashed? Fortunately in my Marathon kit I chanced upon kickbutt amped energy ballz. They are pleasantly chewy and ‘restore mental alertness, enhance performance and heighten concentration’. Wowee.

they’re big ballz too.

All right. I’ll stop there.

Team Myeloma

Team Myeloma

Unknown-7

testing for steroids? Damn. Confess or flee?

Ring my Bell

Today is Diwali. The Festival of Lights in India. In the night we light oil lamps to signify the victory of good over evil within an individual.

And then you gamble.

Faith and chance.

Today is also my last Chemo day. And wouldn’t you know, I’m gonna miss Chemo Daycare.

‘Hello There

Welcome to Chemo Daycare’

You can get used to anything. Adaptable buggers we are. And I will miss the pager. When you check into the Chemo Club House, if you’re in the know, you can lean over the counter and make a secret gesture, like you are about to open your kimono and they hand you ‘the pager’.

It’s long and vibrates in a most alarming way. If you’ve got the pager, you’ve got free range of the entire hospital grounds. So you can wander to the atrium to snack along to the noon time concert, go down and mess with them at pharmacy by trying to sell back your steroids or ativan at a profit, or pinch a labcoat and do a bone marrow biopsy or two.

And then the pager would begin to vibrate. Stridently. And I’d meander back to be admitted into the Clubhouse. Pastel walls and warm blankets. Last few times, I brought my scrabble board. If I could, I’d crack open some red wine and invite the nurses to, you know, play a board game, cause they feel like the kind of family you want around.

Tempted?

Today I will ring the bell.

There’s a bell by the door. You ring it once you’ve completed your cycles of chemo, once the requisite amount of toxicity has dripped into your vein.

A chance for renewal. This bell, its sound a moving of molecules against each other. To remind us we are like these particles, membranes touching but at our core, alone.

I cried when others rang the bell. I don’t know how I’ll feel today.

But I’ve become a participant in my life again.

Yup, things are looking up since I came down from the roof.

I”m deflating: the wetsuit is rolling off mamma! And I’ve stopped leaking yellow.

Food is no longer the centre of my universe. I haven’t had a pepperette in days. I”ve started picking up the phone, combing my hair and speaking to real, live people instead of my inner tea party of one.

And I regret I can’t take all the credit for the whining of the last post. I’d like to share the statuette with my fabulous writing partner, Decadron. Doesn’t she look chic tonight? (say yes or she’ll take your eyes out)

Is this Chapter 2 of the Yellow Diaries?

Perhaps.

Or maybe it’s the wine.

After my last blog, I let my body take the lead. I watched, fascinated, as my body dressed itself, pulled on snow leopard printed socks and picked up my car keys. It was a body intervention. All done without the cooperation of my brain. It needed to be done.

My body presented itself in front of my friend Ronica’s home. Inside there was warmth and quail. It was after, all Thanksgiving. Ronica was slightly startled to see me I’d sounded so blue in the morning when we spoke. But at Ronnie’s gatherings the people and food are variously textured and arrange themselves in surprising new ways. The evening began with Sang’s entrance, proclaiming from Rilke. Cut to Imali and myself taking an experimental attitude towards whipped cream. It ended up everywhere except on the pie. I tipped my moonface back and took the spout into my mouth.

‘That stuff is toxic, Lisa. So bad for you’

I paused in mid-spray.

‘What’s gonna happen Jules? I”m gonna get, THE CANCER?!’

Eyes widen. Pause in mid-breath.

Then,

Collapse with wild, loony bun laughter.

And then I had wine.

I’m not supposed to, technically.

And then I drank wine.

Sometimes you let your body lead. The body knows where it want to go.

So between the wine and whipped cream, I felt I had found the cure. For chemo brain if not for MM. You just gotta get unknit.

I didn’t have a clear reason to be blue last week. My last chemo treatment is today. I’m getting weaned off the personality altering steroids. I have a ‘port’ which means I don’t get poked anymore. I like my port now. You can’t tell it’s there unless I point out the little button beneath my skin. Makes it kind of kinky. Cause it’s buried below my right shoulder just above my boob. Gives me an excuse to flash all the time.

Bobcat digs it too. Since the steristrips have fallen.

Go ahead. Poke my port.

I even have a card. I carry it with my credit cards.

‘This patient has a Vital-Port Vascular Access Device Implanted’

Don’t fuck me with!

And I’m not patient.

There’s an entire port culture. It’s like a subtribe of the Cancer Club. Nurse Gilda at PMH does it with a sweetness at odds with the words:

‘Ok honey, I’m going to access you.’

This always thrills me. It makes me feel like a Japanese Manga Astro Girl. Access my Vital Port. Feed the Vitaler part of me, make it bold and decafinated and make me nothing greater than human, Sensei.

I filmed an interview with Rosy for ET Canada yesterday. There’s a strong sisterhood of support which transcends disease. I give it a colour:

Yellow.

I’m rolling in yellow now. Spreading slashes of yellow across my rapidly deflating moon cheeks. Sholeh from ET Canada gave me a flip video HD recording device for the MMwalk on Sunday.

Does she realise what she’s unleashed?

Yellowcam.

I’m gonna be participating in and watching my life at the same time.

Rad.

Sindi got me  thinking about travelling with a duck billed mask. Or a painter’s N95 mask. Reserving the seat at the front of the aircraft.

‘I got the Cancer. Give me your best seat cause I’m immune suppressed! And pilot food. Got a prescription for Pilot food people!’

Sindi and I also got thinking about the influence of metaphor in how we approach cancer. How we cope with the things we fear by declaring war on them. How we don’t want to be defined as cancer ’survivors’. I don’t know how I wish to be defined but I’d rather chance on it myself. I’ve taken Susan Sontag’s ‘Illness as Metaphor’ from the parents of Perfect Propaganda Baby, David and Suzanne. It may give me a clue why this war metaphor troubles me.

After all, where’s the enemy?

It’s in me.

It’s me.

I’m thinking about losing my hair. It’s gonna happen during the stem cell transplant. I have shaved my head before for a film called Water. This time it’s different. I may grieve for my loss of choice. Or I may not.

And Suzanne’s ‘Propaganda Baby’ Jackson got me thinking about freezing my eggs. Leaving frozen bags of my essence in steel containers across the city.

I’m thinking about stem and marrow. Protein on the surface of white blood cells. A new geography to explore. A new land, new symbols to read in the sand.

I”m thinking about onematch.ca the stem cell and marrow donation network. Shamim and Hanan want to register when they arrive in Toronto on the weekend. They are generously bringing their veins along with seven spices and Tord Boontje chandilers.

I’m thinking about Warner and his journey. He’s just ahead of me on the MM belt. He’ll be walking on Sunday too. His friend thought of a name for his team but he went with another.

‘Bad to the Bone’

I wish I’d thought of it. It’s not prophetic. It’s playful. And life is a leela, the hindus believe.

A play.

It’s all theatre dahling.

I was Lisa the actress. then I became Lisa the actress with Multiple Myeloma. What will I be in this next chapter of the Yellow Diaries?

Me and bobcat are gonna go see ‘Where The Wild Things Are’ just now. And then line up shrimp feet. Yes, that’s what he does my bobcat.

Without looking.IMG01858-20091014-1653

And, tired of donating with a dry click of the mouse? Looking for an innovative way to support the MM5Kwalk on Sunday?

Too eccentric and special to contribute the traditional way?

I’ve got the solution for you: http://www.etsy.com/view_listing.php?listing_id=23083708

Ray of Light, an original painting inspired by the walk…il_430xN.64136942

Thank you for supporting the Yellolution

The Tarantella

I’ve been on the roof until now.

‘Monsieur Dunning est monte sur let toit est il refuse categoriquement de descendre!’

This from my favourite short story in Hemingway’s ‘A Moveable feast’.

It’s about a jar of opium and the poet Monsieur Dunning. Hemingway is told to deliver the opium only in the case of any true emergency. And the day comes when Monsieur Dunning’s concierge arrives beneath Hem’s window:

‘Mister Dunning is on the roof and categorically refuses to come down’

I love this phrase. I don’t know why it gives me so much delight.

So I’ve been on the roof and I’m ready to come down. And I’ve not been lured by the opium as much as Shamim’s missive:

‘you can also see from the ground. Don’t be afraid to come down for a bit’

I have spent my time on the roof watching. Inviting my neurotic mind to dance the Tarantella.

Any sort of extraction, I expect, is not without shock. You mine into a mountainside, or the marrow, and you bring material from somewhere deep into consciousness. One of the unexpected side effects of Cancer for me, is the release of some toxic thoughts. I call it flapping out the fears. Hang them up on poles and watch them flap. Violently. Like flags in a windstorm.

Snap, snap, snap.

So what’s flapping?

Is it the material of fear or the wind?

No.

It’s my mind.

Flappy.

So with mind flapping, in this last cycle of treatment for MM, I’m without strategy.

Except I have a reverance for what came before. And for what will come.

Cause just now, I don’t have enough energy for the present. Except to do what’s essential. Like, tell them you love them. Burn off excess interactions. Eat what you want, when you want. Use your best conditioner.

Book that trip to Argentina.

No more deferrals.

Like Gilda Radner said:

‘If it wasn’t for the downside, having cancer would be the best thing and everyone would want it.

If it weren’t for the downside.

Chemo is cumulative. It has a pleasing sound to it. Like, ‘suicide is painless’

I joke of course.

So the toxicity accumulates in your system. I’m limp all the time, like a heavy camel coat in the summer. Being a covert type A I don’t think I have ever spent longer than three days in bed before this. Not that I haven’t been ill with fevers and flus. Most often I had a ritual of getting sick near the end of a heavy filming schedule. Dr Coetzee in Capetown, or Dr. Sharma in Delhi or Dr. Verboeten in Rotterdam would show up on set, I’d get a shot, or some pills and doze between takes. Health never stopped me from working.

Before.

So my strength is going but the side effects of my beloved, my obsession, the steroid otherwise known as Dex, have increased. For instance, a marked decline in concentration.

Which has never been robust anyhow. Self admittedly a bit breezy before, now you can both distract and occupy me with a shiny bit of foil.

For hours.

Which is why there has been no blog. I can’t seem to participate in my life just now. And my complaints are corroding my only child’s sense of propriety. That’s the part that makes me wince. At myself.

Wait, here, sit down, you’re not deaf are you? Have some kielbasa and cabbage rolls and hear my litany:

My eye infection is back. My immunity is low.

My belly is huge. Night sweats.

Yadda yadda yadda

And I want to BITE everyone.

Like that kid in the wolf suit from ‘Where the Wild things are’

I’m, like, six again.

And I miss my mom.

The past is a tabula rasa, said Henri Cartier Bresson, but it usually comes back, like a burp.

He would know.

More battered than Reliable Halibut and chips, I have just enough zeal to butter my morning toast.  I whimper a lot to test my father’s innate principle of ultimate protection. He never wavers. But I’m worrying him, my ranting and carrying on. In a coronation worthy fit of petulance I announced I was not going to go through with the stem cell transplant.

Or at least defer it.

Until after my trip to Argentina.

I’m feeling more conflicted than an ovulating stripper.

Tumblestack.

On a downspout.

Cancer this week, has me bleeding yellow. What I can do now is be still. And watch. And in the past week, out of the back pocket of my mind, all my phantom fears are making an appearance.

My friend Vishal left a message when I returned from Vermont.

‘Lots of clear thinking in this period cause everything is amplified. Navratri is still on. Om shanty om.’

Damn Vishal. Its irritating to have an enlightened person call when you’re trying to feel sorry for yourself. Besides, I’m all sediment.

Or maybe it’s the Dex.  Just after I’ve surrendered to the wetsuit and moonface, I find out it makes you crazy.

Ok- its mood-altering. Which doesn’t sound menacing unless you’re Bobcat on a trip to the west coast about to return to Toronto on the redeye.

“I can’t take it anymore Bobcat. I love you but I’m heartbroken’

‘What happened? What did I do?’

snow leopard print socks- a reflection of my MM cells. Sure to wear them on the walk

snow leopard print socks- a reflection of my MM cells. Sure to wear them on the walk

‘Never mind. You’ll never know. Just know I loved you and you ripped open my chest like a pair of overactive Russian greyhounds. I’m raw and hurt and broken. Ciao my love. In the next life.’

‘Wha…snow leopard?!!’

Click.

Bobcat calls me snow leopard. And not after the mac operating system.

We are a cat clan of two and I hope he will forbear.

Wars are created when both sides believe their stories. The healing process begins when both sides see that the other side believes their own stories. In this ongoing struggle with the Cancer, I can’t fathom the motive. I’m mustering all my yellow but I do not know why. What have I done to provoke the confrontation in my marrow, what’s the grievance?

We’re committed to the yellow dance, the MM and me.

The Tarantella.

Thanks to the Cancer I have an entire tea party of neuroses. We sat around drinking Mariage freres and playing with pipe cleaners all last week.

‘You’re gonna lose your hair during the stem cell transplant then, huh? Good thing you don’t have a face expressing the syndrome resembling hyperactive adrenal cortex with increase in adiposity otherwise known as moonface…’

‘You’re not gonna get work again as an actress. Good thing you’ve got a back up plan…check?!’

‘Stem cell will eat up another six months of your life? Now that you’ve got your porta-cath, you’re mainlined for the lifestyle. You may as well get used to being a patient. It’s the steadiest job you’ve ever had.’

‘Good thing you never wanted kids before cause you’re gonna be infertile’

Damn this little thinking party of one. I finally figured out what they find funny is calculated to wound

Since my diagnosis I’ve been in the yellow construction business. As soon as I got diagnosed with Multiple Myeloma I got busy. Gradually I’ve had to drop my preoccupations one by one. No yoga classes. No meetings, auditions, classes or huddling with Jerry over renovations at the Hiawatha house. Dad and Jerry are holding down the fort. In short, I have nothing to distract me. From myself.

So this last month of treatment I’m stripped. Down to being with myself.

I can seize this opportunity to learn to make breaded food. Or to spell backwards. Alas, I have no energy.

I have to bring down the shutters on Lisa Corp for a while. For instance, I am aggrieved to cancel my TEDX talk. I can’t at this moment get through an 18 minute talk. I hope Raji will forbear and give me another shot next year. And when I did an introduction for Bollywood/Hollywood at the Jackman theatre on Saturday night, I deferred even a fruit juice with Steve Gravestock to return home to bed. So sleeping has overtaken eating as my sport of choice. I wonder how others live through this time. Time is a valuable commodity. Free time even more so. I’ve got loads now.

So people keep reminding me, they also want more siesta and play time- just like me.

‘if I had that time, I’d catch up on my sleep and watch Che Guevara- parts one and two’

Are you fantasizing about a Cancer Vacation?

Cause if I didn’t feel so completely depleted, I’d be having the time of my life.

Buh

Cancer club med? Cancer time shares?

I’m in the mood to knock back my roids with some wine. Red and white blood counts remind me of full bodied merlots and gerwurtztremeinners.

Salut.

Or I can surrender and peel open my bone.

And I miss my mother.

She is the mystic in my marrow. She always understood more than my self-reverant mind would allow. She gave unconditionally. She transcended barriers of bone and flesh I won’t understand in this life. She was too powerful to capture in a picture. She was completely irreverent and she would change the barometer in a room just being there.

A lioness.

She left her body almost one year ago.

It’s a bandaged story I haven’t yet touched.

Secrets melt from my marrow. If I catch their stir, I will extract them from my body. Clean shift. It’s alchemy. Cancer is alchemy. In our body is hidden a metaphysical substance which is the incorruptible medicine. Release it and you heal.

Not without burns.

Barn Burn Down

Now I see the Moon

Our allegiance is to making sense of stuff. We have immense preoccupation with figuring things out.

But you’ll hurt yourself more with a helmet.

That’s why I went to Vermont.

At Karme Choling, I began to drop all my preoccupations. Laura somehow managed to crack me open and air me out, as well as safe guard me from the fiesta of my own mind. We missed several exits on the way to buying snow leopard printed socks from Sunshine and another day chose amulets and necklaces from Eva Wong. Turquoise for rejuvenation.

Laura reminded me how stories colour and run our lives. Some are right in front and some beneath the surface.

And on the last night, a banquet in the main shrine room. Laura now in the role of the alchemist, put on the traditional Italian melody which inspires convulsions

‘If you are bitten, you must give into the frenzy, and then return to the table’

And we all did. We danced to the Tarantella, the dance inspired by a spider bite.

Poison transformed through dance. Perhaps its a time to sweat and convulse before healing.

The curative dance.

Remission. Transformation.

My last chemo is on the 16th of October.

Maybe Shane and I can bust out the Tarantella on the day of the MM walk for the cure.

One more week until the walk: http://pmhf3.akaraisin.com/Pledge/Participant/Home.aspx?seid=2489&pid=172578&mid=9

The generosity you have shown for the walk boosts my spirit. Thank you again. It’s thanksgiving here in Canada. Gratitude move my pulse.

Thanks for the turkey and scrabble, Super-Noni!

Thank you Sheetal Sheth my beautiful and compassionate co-star for helping to promote the Walk on her website.

Nairong for the aloe vera and other spells

To Sindi Hawkins, Doc Raina, Dr Galal and my Dad for keeping me going. For transfusing me with their yellow if that’s what it takes. Thank you Sindi for sharing Michelle’s mom’s haiku.

Hanan and Shamim. My heart’s family. And for carrying Tord Boontje chandeliers across the ocean. And for carrying me.

Lovely Bernadette Jones for spreading the word on the walk. For all the celebration and bean salad she and Alan bring to my life.

Andi Sandowski for dedicating two karma yoga classes to the cause.

David and Molly Bloom

My Mom for remaining. And for refusing to remove the difficulty of facing all that am seeing.

Thank you all for continuing to relate to the Yellow. Your attention and tender bring alchemy into my present.

It’s the JOLT of living.

Next up Harvest Season: Stem Cell Collections

I’ll post again soon very soon this time.