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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

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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.

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be very suspicious…

So, here we are washed up on this Yellow sandbank together for a pause. And all I have to say is:

Be suspicious of my motives.

and

It never once occured to me that I won’t get better.

I remember sitting in Dr. Silverman’s office with the Bobcat. I was called in as the last patient of the day. You know what that means. In your cells, you know.

Dr. Silverman was giving me the new MM membership pack. There were a lot of details. He paused sympathetically after each installment of new facts. A moment to digest. Or cry. Even bobcat stopped scribbling notes.

‘Ok.’ I beamed. And nodded.

‘Are you sure you want me to go on? It’s a lot of information. We don’t have to go through everything today.’

‘No, no. Please, go ahead. Do you want some water, doc?’

So I smiled and nodded through the entire Myeloma starter kit. Of course I didn’t hear a thing. I stopped listening at the last syllable of Myelo-ma.

Why?

Because it didn’t occur to me that I won’t get better.

I didn’t need all that information. Statistics. Percentages. Protocol. The threat of meaning reassures some.

Not me.

Knowledge is a heavy backpack.

So I defected to curiosity. I didn’t want to ‘think’ I knew nothing.

I wanted to know nothing.

And then, from this stainless place, I could learn. Without facts, maybe I could learn. The Tibetans say,’ brain shrinking, mind growing’ and it makes perfect sense to me. But more on that later.

So I delivered myself unto the care of the Princess Margaret Hospital. And lucked out. It’s one of the centres of excellence for Myeloma treatment in the world. The nurses blaze compassion and have been known to sing along with a desperately out of tune patient. Or so I’ve heard. The Druxy’s downstairs makes a decent chicken guacumole too. World’s Best in Canada.

I started my membership operating from a place of trust.

Because it simply did not occur to me that I would not get better. We all face different kinds of adversity, but hey, nothing is permanent, said Mr. Chaplin

Including your sorrows.

So because it never occured to me that I would not get better, I get alarmed when well wishers try to comfort me.

Like: ‘I know you’re going to beat this thing, because statistics, well, they’re not always accurate.’

goose bump.

Uh, what are you trying to tell me?

I want to make it clear that I am utterly heartened by everyone’s expression of support. It makes me want to look beneath the surface of things more. I want to pop open each person’s lid even before I know them, cause now I know there’s a substance inside that matches mine. Even metaphorically, however, that could get me jailed.

I also know its just difficult for people to know what to say when you’ve become a member of the Cancer Club. I get it. There’s a tyranny of cheerfulness in our society that doesn’t deal well with the heavier moments. Not everyone has a Nadama in their life- my Italian spiritual mother- who coaches me in her Milano accent ‘alora, you have to make friends with everything in life, EVERYTHING. And little milk in the tomato sauce, it makes it less acid.’

A cameraman was leaving my home the other day after we filmed a piece on Multiple Myeloma. He called out:

‘Good luck’.

Then stopped himself on the stairs. ‘Why do we say that? There’s a theory that if you say that to someone with a disease, it implies that they have a struggle ahead of them. But what else can you say?’

‘OPA? And then break a plate. Or smash a cartiledge?’

‘How about, congratulations.’

So I’m making friends with MM. I intend to be the master. Now I’m accumulating the weapons for my mutiny. I’m learning about my IGG/A/M immunology test which measures the ‘M’ protein in my blood. As it drops I get closer to crossing over to ‘Full Remission’ membership. I’ve got a lot of reading on Stem Cell Transplants. Today a friend introduced me to Kathy Giusti, who was diagnosed at 37 like me and has gone on to establish the Multiple Myeloma Research Foundation, intensely focused on finding a cure. (http://www.multiplemyeloma.org) All inspiring stuff.

Living inside and out at the same time. Using the Yellow to guide me.

It’s still never occured to me I won’t get better.

And the reason I write, is I’m not good with people. Or crowds. Which, of course, is why I became an actress.

Which is my segue to Red Carpet reporting, Yellow Diaries style.

Here’s where it all comes together.

The Morning of the premiere for ‘Cooking with Stella’ I wake to find that someone has laid out my ‘stay puff marshmallow girl!’ suit. That’s an upgrade from my wetsuit. I’m having a reaction to my meds. So triple bloated this morning I feel my day would be better served in a daycare where children could land safely from a height on some part of my body. But Don MacKellar, my ‘Stella’ co-star and I were invited by Piers Handling CEO and Cameron Bailey co-Director of TIFF to open the Toronto Stock Exchange . I am thrilled. Since I’m unemployed, I’ve started small scale trading and I’m hoping for some major swag. I’m thinking Gold ETRs…

oops what happens when you miss? lucky I have backup

oops what happens when you miss? lucky I have backup

Little snafu. None of the vintage dresses that Rashmi has sourced for me fit. I pull on a NADA black sheath and a big smile. And the morning goes off brilliantly. (The TSX is ‘opened’ by touching a display screen- no bell, no confetti. And we got to make a lot of noise. Isn’t that a hoot?) And here’s the thing. Before in any kind of public event, I was self-conscious. I’m shy by nature. When you pose, you don’t have to reveal anything deeper than the colour of your clutch. And you are being watched by eyes that don’t look for anything deeper than a pretty picture.

My awkward nature, the things left unsaid.

This day was different. I smiled like I meant it. Because I did. I was grateful. And I wanted it to show. That has never happened before for me.

Of course before MM, I wouldn’t dare show up with a moonface and triple layer wetsuit. But at least now I can smile until I can’t see. Makes you less self-conscious.

And that’s what I remember most about the Red Carpet. I was relaxed. I was happy. And I could show it. It’s a breakthrough for me personally. This experiment with honesty.

Next time no heels though. I’m shaky enough on the Velcade.

And no questions please about my ‘condition’. We’re here to celebrate.

Dilip Mehta and moi

Dilip Mehta and moi

smile until you can't see anymore- makes you less self-conscious

smile until you can't see anymore- makes you less self-conscious

And then I went into the theatre and had some popcorn, cause you know, it was snacktime. Bobcat took Devyani’s M&Ms and sprinkled them into the corn. Life with Dex.

‘Cooking with Stella’ is just what the world needs now- funny, warm-hearted, beautiful to look at with some bite. And damn if those cooking scenes didn’t make EVERYONE hungry. Not just the ones on Dex.

Congratulations Dilip. And a big salute to my co-stars, especially Seema who has given a bravura performance.

Then I get tired. We all move to the restaurant for the after party celebration. I’m particularly happy my dad has come out tonight. About the film he tells Deepa, ‘thank you, I haven’t laughed that much in a while’.

My marrow tells me to attend to my father. He’s worried about me, I know. He’s the caretaker of the bitse right now.

But it’s never occured to me that I won’t get better.

And I started by asking you to be suspicous of my motives in writing this.

Well, I’m helping myself.

Thank you for all the continued love and support. There is a cure around the corner. I’ve got a lot more stories to share until then. I’m off to Marineland now.

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Let’s all floss

Bobcat fixed my teeth.

Teeth are important. Especially if you eat all the time, like I do. It’s good to have a full time job.

Teeth by Bobcat. Body by Dex.

Bobcat has excellent teeth. And a dentist he is slightly scared of, who wears very short skirts.

Me, I kept a thousand mile stare in my eyes every time he mentioned ‘dental work’. I avoided any kind of an examination- dental, mental, or otherwise- for more than ten years. It was my crusty badge of honour, and made me feel like ‘the most interesting girl in the world.’

That should tell you something about me.

Bobcat: International Cat of Mystery

Bobcat: International Cat of Mystery

Or at least about me pre- Cancer Club.

I never planned anything. I moved, constantly. And in my bones, a typhoon coming.

A word about Bobcat.

Yes, he’s real. Yes, he’s a man.

And yes, he’s a cat.

He lives and works in the city. He’s deeply methodical, effortlessly successful at anything he tries and he lines things up. Sometimes without looking at them. His eyes belong to the mountains and once when he was cycling in the dessert, he told a me about a bobcat who would silently watch him from the edges of civilisation.

‘Did you recognise him?’ I asked

‘well….no?’

‘Your brother. You’re a bobcat too.’

He also confesses he didn’t understand a single thing I said for the first three months we were together. And he keeps wanting to rip off my steristrips before they fall!

grumph.

buh.

Can you tell I adore him? Can you tell I pluck from that harp?

just don’t tell him now. He’s a serious bugger too. And he has a reputation.

So we are, on the surface, total opposites. But we both vibrate at the frequency of Yellow which gives us understanding beyond the nuisance of words and meanings.

It was Bobcat that sent me for the tests that led to my Membership into the Cancer Club. It’s a good thing he has strong teeth and didn’t back off. And shortly after that, he got my teeth fixed.

See, dental health is very important for Members of the Myeloma Club. That’s what they tell you when you first get membership. That’s because there’s a risk of osteonecrosis or ‘abnormal death of the jaw bone’. So you are advised to complete all your dental work before beginning treatment.

I laughed. Of course.

‘I’m not sure what normal death of the jaw bone is, but fortunately, I’m not married to the idea of talking for my whole life. Besides. I think I’ve talked enough. I can always be mute in Key West. Tragic and mute. ha. ha.ha?’

Bobcat smiled but his face got all like hardened honey. Or one of those Easter Island Statues.

And then I just knew. It wasn’t just a shift but the breeze working harder inside me. Looking at his face, I knew that now life was going to change. I had just been diagnosed with MM, the ‘call sheet’ of treatments was hanging by a magnet on my fridge but I could not start the treatment without some gesture, some ritual to acknowledge this passage. In India, you can break a coconut.

Me, I learned how to floss. For the first time in my life. I began my War on the ‘bitse’ with a little bit of string.

Sometimes you need that one pause, before the progression to the next level. A moment. An acknowledgement that you are passing through a new membrane.

Sometimes you just need to floss.

goop.

‘Bitse’ is Bobcat’s word for ‘The Cancer’. He likes to call it by this code name.

He’s the Tactical General of Operation Yellow. He’s tactifying me all the way towards ‘Full Remission’. I’m just the recruit. Every successful operation needs a Visionary. Especially one with good teeth.

So in a strange way, fighting with the ‘bitse’ has give my life a grounding which wasn’t there before.

I wonder what other graces will melt from my marrow.

This morning Bobcat talked about turbo-charging the Yellow, making it fluorescent, stepping up the pace. Patrick Swayze passed away yesterday from Pancreatic Cancer and there’s a sober atmosphere over the film festival.

The response to the Yellow Diaries charges me. Every word goes straight into marrow. I feel tiny wings scorching through the darkest bits of my bones. The unhealed bits.

This morning in particular I read all the messages that arrived in the night and feel the breeze working harder inside me again, lifting. This is another passage. A reboot.

Share shock. The recurrent shock of sharing, openly.

From the message board: Warner is coming off Dex so his pants fit this week. And ‘let’s struggle together’ to understand my english. Open invitation!

I feel optimistic as a hippie who has remembered the cause.

And by mid-morning I’m at the Intercontinental, having an omelette with the cast and my director of ‘Cooking with Stella’. The film is getting a really warm reception. I can’t wait to see it tomorrow night.

Somewhere on the ride to the hotel I change out of my wetsuit into my ‘stay-puff marshmallow girl’ suit which is an upgrade, or not, depends on how you look at it. All through the morning’s round of interviews and photos, my moonface keeps growing. It’s one thing to have a moonface and quite another to feel it spread into a billboard. And I’m clearly vibrating now, a million little maws yelling for my attention. I’m imagining little mouths gossiping and spitting and chewing pepperettes all over my body.

Maybe all the love and messages have overcharged me. Too much emotion. I’m short circuiting now!

Tripp-ing!

Not like its not happened during a film fest before, but this MM ‘Reaction’ is unique for me.

I say, spunky to that cancer, but jeez- I don’t wanna explode.

So I wrap up at the hotel, and get myself over to PMH to report this. Dr Galal is out of town for a conference but fortunately Dr Donna Reese, who is the Director for the Program for Multiple Myeloma at Princess Margaret and a respected researcher in the field is able to see me.

Of course not before I have a snack. Fortunately I have to wait for 20 minutes. Druxy’s. Bagel and lox?

Yesterday it was dimsum at Rol San. I mean, I couldn’t roll down to my fitting at NADA without shrimp dumplings and sticky rice lotus leaf balls.

BILLBOARD Moonface at PMH- rare moment between snacks

BILLBOARD Moonface at PMH- rare moment between snacks

Ah, life on Dex.

I go through all my symptoms with Dr Reese. I’ve learned to be precise. This is a big change for me, I used to be disdainful of details. Now I’d draw them Bold hype on a canvas.

I’m not unduly alarmed but I’ve learned to listen to my body.

I missed a lot of messages before.

Dr Reese instinctively understands. I”m listening in on my marrow. Living inside and out at the same time.

We talk about what I’m feeling. I have a lot of questions and it’s relief to joke and talk everything openly. The drugs I’m on make you pulse, make you jitter, they make vibrate. But it’s also going to help me kick the bitse so I won’t complain. I’ll giggle when the vibe amps up, or call up Bobcat and describe it until he begs for a bone marrow biopsy.

Ha.

The simple fact, it seems that this ‘reaction’ I’m experiencing will become more of a guest on the couch now, rather than a delivery at the door. I can’t just accept a small package and turn him away. He’s gonna be eating from my fridge. It’s part of the MM Marathon.

Another passage.

No problem.

Let’s. All. Floss.

And tomorrow morning I’m opening the Toronto Stock Exchange with Don. Ain’t that a hoot?

Got a preview of my dress. The colour- unbelievably- matches my Myeloma Bracelet. I’ve got a different colour on my mind now. Red. I even said it to Bobcat when he asked about the Gala. He said, ‘What’s the dress code?’

Previewing the Colour of Yellow on the Red Carpet

Previewing the Colour of Yellow on the Red Carpet

Red tie.

http://www.myelomacanada.ca/en/order_bracelet.htm

I’m going to be loopy, and it’s ok. I’ve got the Cancer, remember.

http://www.thestar.com/article/695707

Thank you for all the support and love. And for spreading Yellow. Don’t stop, together we can Find the Cure for MM

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Each day is a gift!

In the movie Brain Candy, there’ s character called ‘Cancer Boy’.

‘Hi Doctor, I’m Cancer Boy! No, there’s no hope for me’.

He’s in a wheelchair and shares all the details of his condition in a cheerful monotone, like: ‘Ow- that’s ok, my marrow is low.’ and ‘Each day is a gift!’

Apparently people were vastly offended.

Share shock. Imagine a world where we never hide.

Now just try to create it.

I’ve decided now I want people to feel sorry for me. Especially people in check out lines.

I’ve started joking bout playing the Cancer Card. What’s the use of being part of this Club if there aren’t benefits? I”m not collecting any frequent flier points every time I check into the Chemo Daycare Clubhouse. I get juice. I get warm blankets. I get liquid flush into the shadow life of my veins and I get to make little sounds that offend. Oh yeah: and I’m Blitzkrieging my way to Full Remission.

But these days I’m in the mood to negotiate. Maybe because my Yellow is getting stronger. Or maybe my container, my facade of control is liquifying along with my marrow. My body has betrayed me and I’m finally feeling it.

I want the best seat in the restaurant by flashing my membership: ‘I’ve got The Cancer, and and I like my bread basket warm.’ Or standing in line at the bank: tap, tap: ‘Hey I’ve got Cancer, give me your sandwich, I’m taking your spot.’ Or even: ‘You have to give me a puppy, a PUP-PY! I’ve got the Cancer!’

Best of all: ‘I can’t answer that question: I’ve got The Cancer!’.

I”m going to try that one during the Film Festival.

Sometimes things don’t change enough, even when everything has changed.

Sometimes you want the world to tilt with you.

Back to square one, I know. Ego. Still there after  years of meditation on emptiness and enquiries into the ultimately reality.

And I know I’m not the body. I know I’m not The Cancer.

Blah blah.

But what I am is honest.

And it made me think of lobsters.

yeah. Lobsters.

Ok- jelly fish, lobsters, same sinister family

Ok- jelly fish, lobsters, same sinister family

They’re kinda sinister, aren’t they?

What sound do they make? How do they travel through the water? What electric traces do they leave after they have mated and gone.

I have no clue.

Like I cannot know what is going on in my bones.

The process going on inside my body is so silent I have moments when I want to be a Cancer Outlaw. There’s a shadow life in my marrow and that invisible graffiti needs to be seen, some how. It’s not polite what’s going on in my body. It’s offensive as Cancer Boy. I feel I want to rip the steri-strips off the wound and expose the covert operation going on. This encounter  needs to be brought into the open.

I need to bring in some Yellow.

check.

The Yellow Diaries. Full Disclosure. I’ve done that.

Now a slow movement back to trust. I’m trying to learn how to trust my body again.

Sure, there’s a war going on, there’s nothing pretty about being under siege. But there are choices. The eastern tradition of Warriorship is about being courageous enough to be vulnerable and open- it’s not so much about aggression. I can actually step back and trust and allow the process of healing. And that’s another way to win this fight- scorched earth and rainstorm. Shrink and grow. Chemo and Love. Loving. Lots of it.

Maybe with a little Ayurveda and urine therapy on the side.

Yup. Put that in your Porta-cath. With some Saran wrap on it.

I guess I am still startled by the news of my latest protein work which shows near full remission. I should be ecstatic. I’m a little scared. I’m travelling back to trust. But the girl’s changed.

I’m not just talking bout a visual kidnapping here.

I remember an incident in the early days of my Membership after Bobcat- more resourceful than MacGyver- had brought home a collection of pamphlets on Myeloma from the PMH resource centre.

In the middle of the Multiple Myeloma Patient Handbook, tucked in amongst glittering new words (Basophil! Apoptosis! Waldenstrom’s macroglobulemia! Quiz in 20 minutes!) and the slightly less stimulating headlines of ‘Managing Complications and Side Effects’ I found this:

Other effects that can develop after long-term use of high dose steroids include the Cushingoid appearance (weight gain with a ‘moon face’)

Buh.

Here I come Key West.

It stopped me short. Not that I might die.

But that I might die with a ‘moon face‘.

ha.

Watching.

Classic dreaded Cushingoid appearance: one face of MM. At a shoot two weeks ago.Buh!

Classic dreaded Cushingoid appearance: one face of MM. At a shoot two weeks ago.Buh!

Travelling from out to in. This MM Marathon has sent me on the most treacherous of missions. It’s like going on assignment to a war zone. You cannot return the same when you meet yourself under trying conditions.

You cannot return the same.

Phew. I’m glad I’m off steroids now for the next four days. I think they’re making me a bit, you know, intense. Roid-tensity.

I met lovely Dannielle my manager today. She’s in town for TIFF but we had an off-site brunch. Most of the Film Festival activity and ‘happenings’ take place in a circuit around the Bay-Bloor area of Toronto. In previous festival years we have both put up at hotels in the middle of that ‘Twitch’. But this year, my skin is a barrier no more. Besides I’ve already got an in-built twitch in my feet from the Valcade. Can you say: Peripheral Neuropathy? Don’t need more twitch. I’m listening in on my marrow and I need to be far from people who are mainly concentrating on the out, circling profits and losses. I’m moving in the opposite direction.

So we sat at Over Easy and over eggs and lox spoke about the biz. We talked openly about the wide spread dysfunction in the industry amongst actressses to be unaturally thin, the poor body image, the eating disorders and the size zero. All the self-hatred, all the doubt.

There used to be a time when designers made clothes to fit an actress. Now an actress in Hollywood has to alter her body to fit the garment. A insult to flesh. A denial of lusciousness.

And I remembered. I was like that.

I used to care about being thin. Squeezing my proportions into the latest idea of fit. It was a part of my work as a model and actress but at some point it became part of my life. Anti-life. Denial.

Tap, tap, tap: ‘Hey, I’ve got the Cancer and thanks to MM I have a chance to be healthy again. Now give me your fork’

Is that another message from the marrow? Journey back to trust. To a new relationship with my body. With myself.

And I’m gonna say it. I’M GONNA SAY IT!

With. My. Soul.

Oye veh.

Each day may be a gift, but enough thinking for today, already!

How bout some action: www.mm5kwalk.ca

Here’s another thought. I’m gonna wear my Myeloma Bracelet on the Red Carpet on Wednesday.

http://www.myelomacanada.ca/en/order_bracelet.htm

Tomorrow an interview with Canada AM. Fitting at NADA (still need a name for the dress) and the beginning of Press and Promotions for ‘Cooking with Stella’. And for the first time since my Cancer Club Membership, I changed the date for my chemo to clear Wednesday for the Film’s Premiere. It’s time to pull out my wetsuit and celebrate lusciousness. Stitching it all together. And then let it hang free.

‘Hey, I’ve got the Cancer. I’m cancelling my membership cause each day is a gift!.’

I painted my bedroom wall Yellow after getting Membership into the Club

I painted my bedroom wall Yellow after getting Membership into the Club

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24.24.24

I had a sticky moment this morning.

So, fortunate to be unemployed, I can read. And after reading every single response to the blog, I had to think. I had to break the skin of the messages to understand what was beneath. ‘There is no guarantee that the recipient has read or understood the message contents’ showed up in my inbox the other day and I took it as prophetic. In the arena of the Diaries it never occurred that talking openly about cancer is anything other than perfectly natural. And hopefully kind of, like, hilarious. I mean Membership into the cancer club has come with a long set of Seinfeld-esque episodes that are too juicy not to  share. Including the meltdowns, reactions to the meds or the bleed in your spirit after a day when you need support but don’t know how to ask. In the beginning of our relationship bobcat and I had a saying: the tough part is over. That’s how I felt after the diagnosis. Ok, I’ve got The Cancer. The tough part is over. TTPIO. I’m committed now and like any long term relationship, there’s gonna be some baffling days when the only out is humour or a cleansing cry. But I never thought of giving up. And it’s never occurred to me that I won’t show up rebooted on the other side.

And then I understood. It’s a taboo to speak openly about long term, potentially fatal diseases.

Jeez. Why didn’t anyone tell me?

I would have spoken earlier.

So I started thinking bout a revolution: A  world without the pathology of perfection. Without an unrealistic and painful belief system that we are entitled to get through life without suffering. And then a chance to live fearlessly and realize how important it is to say what needs to be said , and do what needs to be done. Even with insurance companies.

That’s why I am encouraged. The pure, frank, no filters exchanges I see through the Yellow Diaries celebrate the recurrent shock of living. Don’t deny. ‘I can be changed by what happens to me- but I refuse to be reduced by it’ said Maya Angelou. It’s a relief to be able to respond accurately to the world.

Buh.

Then I felt confused as a hippie who has forgotten any worthy cause. So I took ten oval shaped pills for the team. Back to gently carbonating. And then I got sticky.

I busted out all my Swag from my visit to the IT Lounge yesterday and put it all on at once. A word here about swag. I don’t know the origin of the word. It was a mystery, my first few years of junketing at film festivals, these loaded bags piled discreetly at the back of PR suites. Then the year of ‘Water’ opening the TIFF, I got invited to every gift giving suite at the festival and well, kinda got used to subsidising my basic necessities every year after. Swag suites essentially give away everything from vitamins to jewels to the various grades of actors in various degrees of sheepishness. This year however, the IT Lounge at the Windsor Arms got each sponsor to partner with a charity, and will make contributions equivalent to the amount of the goodies that leave the lounge. Suzanne coordinated the visit. I was particularly happy to meet Rob Drynan of Camp Oochigeas, a renowned and fiercely compassionate camp in Northern Ontario for children with Cancer. Coincidentally, Bobcat did an 800 Km charity cycle for the Camp a few weeks ago so I knew of the camp and its reputation. In a year of serious fundraising challenges, these efforts need to be acknowledged. Cynics can take my macaroon and shove it.

Swagging with Suzanne

Swagging with Suzanne

So this morning, my response to our cultural stigma against full disclosure of chronic and potentially fatal disease was to pile on three Goody headbands, a pair of Brooks running shoes and a tiger’s eye and turquoise necklace. Then I sampled all my Kiehl’s products. I’m back on steroids so sticky fingers turned me towards the question of sustenance. A couture brand of chocolates had made its way into my goody bag whose tagline could be ‘too beautiful for you to eat.’

Ah, the macaroon. If you ever want a visual representation for the definition of ‘torture’ for someone on Dex, here it is:

Dex Degustation- not!

One lick and its over. I’ll revisit after the roids.

Right now I’m looking for Hemingway’s mythical ‘Moveable Feast’. A taste which will trigger a banquet of wholeness of mind, body, spirit. Yellow feeder. I’m amping up my Yellow every day.

A little more on Yellow now.

After filming ‘Cooking With Stella’ in Delhi, I travelled to the mountains in India to try to fable my way back to basic goodness. Eight months later and I returned with Yellow. It’s enough now to distill all my spiritual experiences into this current of colour.

In some part of my heart, I believe my MM is a physical component of this spiritual/psychological cleaning.

When I found out I have The Cancer, I called my spiritual mother in Milano. She lived in India for years and penetrated my marrow. ‘There are two opportunites to grow suddenly in life. One is through sickness. Another through madness. I am glad it is not the second.’

Accidente!

I remember in the days before my bone marrow biopsy, before the ever more frequent visits to hospitals and specialists became protocol, pre-chemo ‘callsheets’ and just before the ‘Bobcat near fainting incident we shall not discuss but which I will blog about’, I told Bobcat that if I had ‘The Cancer’ I would move to Key West and live out my days in a combination of tragedy and hedonism. Painting in the day and partying at night. But mostly it was clear that I would avoid treatment. Especially treatment I perceived as invasive and inhumane.

No one in my family had ever had cancer. I had no reference point. So this brings me back to the subject of taboos. It’s so simple to illuminate the reality of living and healing a long term illness. We just have to talk. Openly.

So now a junior member of the Cancer Club I’m better equipped to disseminate only slightly exaggerated versions of how much fun I have in chemo daycare. And how hilarious was that day I reacted to my Procytex and just try to stop me from flashing my porta-cath from my right upper boob. You- that’s right YOU. Step this way. Don’t turn away. Now how Sexy is that? That’s a direct portal to my Remission Statement: What strikes the oyster shell doesn’t damage the pearl.

Porta-cath circa one week ago. just after insertion. Got the breathalyser option

Porta-cath circa one week ago. just after insertion. Got the breathalyser option

So in the afternoon, my dad and I wandered over to the Beacher Cafe for a snack. Bringing the bill, our pleasant server widened her eyes as she handed it over. ‘I don’t know what this means but it must mean something. You’re sitting at table 24. Your bill is $24.24. I’m not superstitious but it might be a message.’

24.24.24

Oookay.

At home this email from Dr Galal.

Hi Lisa,

I have read your article in the Globe which was very moving, job well done. I just wanted to tell you that the rest of the protein workup indicated near complete remission. I’m thrilled to say the least.

Near full remission...?

Near full remission...?

thank you to all my fellow Yellow Diarists.

For all your messages that move marrow.


If you are lucky enough to have lived in Paris as a young man, then wherever you go for the rest of your life, it stays with you, for Paris is a moveable feast.Yellow feeder. I’m growing the Yellow in my marrow. It shifts the shadows in my bones, moves them towards dark channels of expulsion, silent deep work of

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This from my bathrobe. Adequately pepperetted now. Meat on the Beach got stock. I apologise to any who came after.

End of today- post Plan, pre bathrobe, blog and pepperettes

End of today- post Plan, pre bathrobe, blog and pepperettes

So this morning my berry went rogue.

Yes I got one of those from the Bobcat. And much as I’d like to live as Henry David Thoreau and ‘front only the essential facts of life’ it looks at this point that I’ll be riding a turbo charged Blackbery to get me to my own Walden Pond. When I’m in Full Remission of course. That’ll be when  ‘Transmission’ and ‘Transgression’ will be back on my mind.

I was going to write/blog/respond this morning when the appointment alarm on my treacherous berry went off. I rushed to Moksha yoga Danforth. One of the other Moksha teachers, was signing students in behind the desk. I took a seat and prepared; internally to teach the class. In silence. I was there to teach the Silent Class and yes, my earnestness is comedy sketch worthy.

I was looking forward to teaching this class cause I don’t like to talk a lot. Which is why I became an actress of course.

At the choice moment l was asked by the other teacher, the obvious question: so are you taking my class?

Gawp.

No. I’m supposed to the teach the Silent Class.

You mean the one on Sunday.

Big, steriod puffy grin.

Here’s the point. We stopped for a moment. Talked. I shared what I’m going through- ‘The Yellow Diaries’- and D shared. The filters came off, there was trust and operating from that place, stories were told and blended.

And silence, which has always been my refuge and my weapon, got the boot. In yoga class. And in my life.

Most importantly, I’m glad I came out of my cave.

I’m glad I was naive enough to do it.

Thank you everyone who has so far taken time to read. And then to respond.

I want to share something my friend Lindsey Love wrote:

‘The rates are soaring and it’s all around us, and all of us all of us seem to have our heads in the sand. Other young men and women need people like you — people in the public eye, people who others think “nothing bad” ever happens to because they seem to have it all on the outside — to show that cancer doesn’t discriminate and that for those also going through it, they are not alone.’

I am humbled and inspired. And reminded that life is a continuous provocation to go beyond who we think we are and at the same time appreciate what is, without asking for an explanation.

At this moment, it’s like taking a bite of my favourite CAKE. I’ve got a huge, sweet mouthful and I can’t describe it, cause, you know, my mouth is FULL. I do however, feel my immune system got a solid boost from all this love and advice. For instance, there’s always urine therapy to explore. That will put an entirely different spin on the ‘Yellow’ in the ‘Diaries’.

But there’s no ask here. Just a share.

As I share and go through these experiences, I don’t feel any sense of loss or regret for what is happening. Each of us face adversity everyday. Emerson said, what lies before us, what lies behind us, is no match for what lies within us. I’m also learning that everyone has a story to share. None is more weighty than another.

And blue talk never goes out of style.

But I’m talking Yellow. You can’t do enough Yellow talking. Yellow from the solar plexus. That’s the seat of the will. That’s the place where everyone- especially women- should breathe into and expand.

To twist another quote: I haven’t had the trouble of growing up normal so that view doesn’t pervade my world.

So next up in my day, I went downtown to chemo. It was a real scramble of a morning. The previous day I made my ‘announcement’ through interviews in the Canadian press (organised by Suzanne Cheriton my Arian soul sister) and did a fitting at NADA for my upcoming red carpet event for ‘Cooking with Stella’. Subcutaneous fat was definitely on my mind during the fitting but Nada is coming up with a nimble and wondrous sari inspired dress which I want to name. I have a compulsion to name everything around me. I’m also entrusting Nada and Rashmi with my subcutaneous fat. ‘Piglet drinking a capacinno’ or ‘one legged crow on my car in summer’ won’t cut it. I need some time.

My Dad, herded me, drove me, waited with me, fetched me soup. How do I describe this symmetry of love and service between us during this time? He’s the source of my everything.

‘Hello there, Welcome to Chemo Daycare’

Practically sounds like Neruda.

I checked into the Club. Well into our second hour of waiting, Bobcat arrived. ‘Noble, puffy one’ he pinched my cheeks with a paw. Cleaned my glasses. I purred and inhaled some yellow from him. Played some word games. Had some juice and crackers from the Martini Cart wheeled in by David, one of the volunteers who turns my thought to the true essence of warriorship: the refusal to give up on anything or anyone. I’m sure you get the same service at the Spoke Club but again- no juice boxes!

Then I was called in for my 15 minute dose of Velcade. It’s one of the quickest, ‘Sexiest’ doses of chemo available out there that I know of. I’m immensely grateful to be a recipient as it’s such a powerful and effective first line treatment. And with my newly inserted ‘portapotty’- I mean ‘porta cath’- my treatment protocol has gone through seismic change from what it would have been even a few years ago. So rupture your reality. Read about Jill Lang Ward:

Click to access sault%20ste%20marie%20woman%20081109.pdf

And prepare yourself for a miracle. Like I am.

Incidentally the

2009 patient, family & healthcare professionals conference, ‘Living with Multiple Myeloma Conference’ is taking place in:

Calgary, AB – September 11 & 12, 2009

Wish I could be there. For more details go to the Myeloma Canada website.

Back to the Cancer Club. The mission of the day was for Bobcat- and myself- to learn how to inject epoetin which is used to treat anemia. It’s a subcutaneous injection. Yes we are back to subcutaneous fat. And who I’m gonna entrust it to. And bobcat is a brave bugger (with the sole exception of bone marrow biopsy incident I shall not speak about but definitely blog about) but I’m pure chicken. That’s going to be in my Remission Statement: Thanks Nurse Betty, but its never a little prick for me.

Yup. that's me in FULL Remission

Yup. that's me in FULL Remission

BOLDFACED Nursing team in chemo daycare in PMH (Princess Margaret Hospital) really deserve their own block advertising- and I’m not just saying it because they are the Centurions of my veins and those of others. More later.

So today we learned how to administer a subtaneous injection. Really its not a big deal but bobcat went online and apparently there are thousands of ‘how to’ videos on youtube. It’s convenient we’re both researchers. Previously (and earnestly) I’ve been known to spend months doing research for a role. That was always part of the pull and delight of being an actress. That and the fact I don’t like to speak. Out loud.

So we got a demonstration from my nurse. There’s a few options for the injection. Your tummy. Your bum. Your upper arms. My mum is eastern european. I chose arm wattle.

And it really was a quick poke. From a preloaded syringe which only looked like a mini harpoon owing to its micro-sophisticated spring back action. Simple. And the bobcat did not get it stuck up the nose. I mean his. No hysterics from me either. Thanks to my nurse and her exceeding calming approach. I didn’t even have to sing. Which is the norm when I get an injection. I have veins which collapse. So every time I’m bracing myself for multiple pokes, in my times of trouble, I normally turn to ‘Hey Jude’. Although it’s not a well supported sound on the first poke, the chorus gets a lot more resonant a few pokes in. I want to be saying ‘ouch’ but all that comes out is ‘na na na na’ in pitch where I could have scored the Bond girl role. Somehow this suffering for art cliche always finds traction.

So I’m glad I trusted my subcutaneous fat to someone else.

Bobcat is glad I did not sing but still needs a nap

Bobcat is glad I did not sing but still needs a nap

Finally I topped off my day by filming a Public Service Announcement for Plan Canada. More on that later.

Just before calling action, Craig, the director, noticed my chemo daycare hospital tag dangling off my wrist. He walked across and removed it gently.

‘Is this your pass to the Ex?’

He was referring to the Canadian National Exhibition which is a landmark end of summer fest in Toronto each year. Old tradition in the city.

But I had another kind of ‘Ex’- on my mind.

‘Yup. It is.’

thank you for the Cake India

thank you for the Cake India

I am overwhelmed by your response India. Thank you for your heartfelt response. Know Mother India is my source and my inspiration. Thank you for the CAKE, and all the love and concern. Know I read everything.

Sorry my mouth is still full. I will write more soon.

ami tumhaar bhalo bashi!

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Gently Carbonating

Gently Carbonating is fun in Orange

I was diagnosed with Multiple Myeloma on June 23rd. Started my first cycle of treatment July 2nd. Not long ago.

For me, it was a relief to hear what was wrong. The plasma cells in my bone marrow were rampaging, multiplying, squeezing out the red blood cells and it was time to begin doing something about it. I was also tired of being tired all the time. And you just know when something is not kosher with your body. So when I sat there with Bobcat- my life partner and reservoir of Yellow- and got the news I didn’t react and I didn’t cry. I’m an actress, believe me, I can be dramatic. Not just then though.

First the facts.

Myeloma is incurable.

It’s a relatively rare cancer of the bone marrow that affects about 6000 Canadians. Every year, approximately  2100 more cases are diagnosed.

I’m a junior Member in many ways, having been diagnosed at 37, while the average age is 65. Makes the disease not quite as ‘Sexy’ as other Cancers. But we can change that.

In the industry I’m in, you could say, its motive alone that gives character to your acting.

So today with Velcade and, Revlimid and other promising new treatments in the pipeline our survival rates are improving. But only with an ever expanding toolbox of treatments and awareness can this Cancer be beat. So I’m going to do everything I can to wrench the spotlight onto Myeloma and Cancer Awareness.

I believe it can be cured.

That’s the Dirty Realist in me.

So back to the ‘Yellow’ Diaries. And more on ‘Yellow’ and charging your yellow later…

On Steroids: you are HUNGRY ALL THE TIME.

When Dr. Ahmed Galal, my Warrior-Hematologist at Princess Margaret Hospital gave me my first cycle of meds, he capped his recommendation off with a charming gesture that meant: Beware of sweets.

Well. Sweet things aren’t the only temptation.

Every cycle of treatment, I’m on Dexamethasone for four days on, then four days off.

Who knew it would turn me into a free range chicken, pecking the landscape freely. I find it distracting to walk down my patch of Queen St without stopping for a nibble at the Pie Shack, scoping some sushi or sampling up kimchi and eggs.

I’m currently obsessed with the pepperettes at Meat on the Beach. I had a Gollum-worthy breakdown at the counter recently when I found out they haven’t restocked. So I’ve always been fond of food, fought my battles with food (having been a model) and finally at 37 discovered balance. Until the ‘roids hit that is. Then I see a plate of ‘Reliable Halibut and Fries’ and my stomach goes: THAT IS MINE.

I know I should be doing other things. Like, uh…healing. But so far I’ve kept up a punishingly normal schedule even during treatments. I take meetings, write, sign contracts, read scripts, buy and barter furniture, teach yoga, buy a house, begin to renovate said house. It’s the covert type ‘A’ in me. My years of drama school and manufacturing an alternative reality for a role have also come in handy. I know I’m not trusting the situation. I’m treating my battle like its inconvenient, managing the stage like a tyrannical Bollywood choreographer, but worst of all, I’m not looking it in the eye. I’m letting the situation tyranise my heart. I need to ask for help and support.

They say, name it, then you can recognise it. Then deal with it.

Yup. In time.

Back to Life on Roids. The wetsuit.

It’s an entirely unique experience. When I’m on steroids, I can feel my skin stretch and expand and move in ways and sensations I haven’t felt before. It can be fascinating (for some like myself) to meditate on the pathways of your organism. I bloat up to three times my normal ‘size’. It’s like putting on a wetsuit. Except its kinda permanent. Until you stop taking the roids. Then I deflate again.

Now all this time, I understand that the meds are doing their work. Swimmingly. I can feel it. Bobcat named it. We call it ‘Gently Carbonating’. It means the plasma in my bone marrow is getting beaten back. And its all good. Sometimes it feels like I’m wearing vibrating mitts. Or those thick Nova Scotia artisanal socks. Full of fleas.

I’m getting better. My prognosis, given my ‘Junior’ status and stage of disease, is very good. I’m aiming for Full Remission- and with Dr Galal and Velcade as my co-conspirators- this mission is in the bag. That’s my claim and I’m plowing it into the mountaintop. Though I’m not sure why I keep mixing up ‘Remission’ with ‘Transmission’ and ‘Transgression’- maybe that will get clearer down the line.

On August 4th, TIFF announced its lineup for its Galas and Special Presentations for the Canadian Section this year. I have history and a successful and seriously affectionate association with the Toronto International Film Festival festival. My first Canadian film, Bollywood/Hollywood had a Gala opening at Elgin Theatre. Then ‘Water’ the source of so many positive beginnings in my life, opened the Festival and went on to acclaim and an Academy Award Nomination. Four films opened at the fest since then over the last few years and now this year, fittingly, Dilip Mehta’s ‘Cooking with Stella’ gets a Gala Red Carpet Premiere. ‘Defendor’ by Peter Stebbings also gets a slot. I went for the press conference but had to bounce down to PMH for my chemo treatment. And blending that energy felt just fine. Though at the time I didn’t tell anyone, I felt more invested in my day. Less juxtaposed. So the two worlds can blend: its okay to cross over from ballroom to chemo daycare. There was one difference: the press conference was more stressed. And no juice boxes. Bummer.

So I have two films in this year. Celebration.

Do I go?

Do I deal with the current red carpet obsession with pursuing the ‘of the moment’ perfection? I have after all, set myself up in this world.

I’ve also been groomed in subversion. By the film makers I’ve worked with and the stories they chose to tell.

I don’t want to hide. I want to celebrate. In my wetsuit. This is going to make the week and evening very interesting.

I’m going to listen to my marrow. Again.

NADA brought a spark to my appearance at when they dressed me at the recent MMM festival in Toronto when I appeared there right after getting diagnosed with Myeloma in July. Feels right.

Down to the name. NADA. Nothing. Let it go. Drop it.

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From the Marrow

A few months ago my bone marrow started sending me messages.

The signals: I was always exhausted, pale, drained, and completely depleted of red blood cells. The lack of oxygen made me a serial yawner and spacier than a displaced Czarina. Little did I know, but my hemoglobin had fallen to levels where even a dedicated Blood sucker would turn their thoughts to revival. In between work and travel in India this year, I got a routine blood test and the results sent me to the hospital for a blood transfusion.

But not a reason to stop and, like, change my life?

The attempt to communicate probably started earlier. Time when I was ‘busy’. Building a career and impersonating myself. Travelling a lot and stock-piling impressions and drama and super hyped destinations and a life in ‘art’. So I couldn’t hear my marrow gently carbonating. Trying to get my attention. Instead of tuning in to my body, I tuned out like a landlocked pirate tuning out the sounds of the sea.

And then I stopped travelling and returned to Canada. Got myself tested by Dr Susy Lin, landed in emergency and eventually got full membership into the Cancer Club.

That’s how I found out I have Multiple Myeloma.

Cancer Club, Multiple Myeloma Division, June 2009.

aka The Yellow Diaries

LIVESHOCK: the recurring shock of being alive. More on this later.

Don’t get me wrong. Its true the deepest crises are moments of great opportunity. An event that shocks you into seeing with heart. A place from which to combine survival and celebration. Our boy Lance Armstrong called his Cancer survivor story: a Journey Back to Life.

I believe. But right now I’m a Cancer intern, covert social watcher and I’m doing all this against the backdrop of preparing to premiere two films at the Toronto International Film Festival and wondering if I should have cancelled that meeting with that director while bloated up on my ‘roids’ or I should have just come clean. ‘Yes- I have cancer. The meds shift the shape of my body in ways I can’t predict- but I can still perform torridly well and are looks really still that important in showbiz anyways? I have so much more to say now than ever before…’

Should have said it.

Didn’t.

But I’m writing this blog.

I’m not sure why and that’s probably the best beginning.

Many people become members of the cancer club. Loads of actors and artists struggle with a the capricious nature of our business. There’s lots of ‘coming home’ stories out there.

Maybe I’m just finally listening to my marrow.

I asked around if I should speak openly about getting diagnosed recently with Multiple Myeloma. Some  advised me to keep my ‘condition’ a secret as it could negatively affect my career. Buh? I’m plumper, redder, more energetic and wily than ever before- Kiss me like I’ve been kidnapped!

Tara Maclean, surrogate sister and super talented singer, talked about how the role of an artist is to use every experience- especially the painful ones- and transform them by sharing.

Laura Simms my NY based professional Story teller/surrogate jewish mother highlighted the ‘pathology of perfection’ which we suffer from in this age. How celebrity culture and media create unrealistic expectations in ourselves and others and how perhaps sharing my experiences in preparing for the Toronto Film Festival juxtaposed with my ongoing chemotherapy and treatments could inform and loosen these expectations.

Ted Grand reminded me of the power of community and interconnectivity. Ted’s the founder/director of Moksha Yoga and introduced me to the concept of Sangha or a community with a common vision or purpose. Like on the days when your ‘yellow’ wattage is low and the chemo makes you feel like a nauseous mound of subcutaneous fat, well, it’s good to know that there are others feeling shitty in ways which only the Sangha can understand.

Then there is no getting around this message from Martha Katherine Smith Macgee:

My husband has Multiple Myeloma. If we had not had Myeloma Awareness and donations in the past, he would not be here after nine years and nine months. Thank you for what you have done and will do for Cancer Awareness.

www.myelomacanada.ca/

Labelling and categorizing have their perils as well as their uses.

Sometimes there’s just stop. Find your corner, your own patch from which to speak. And follow the tug.

The Yellow Diaries. Remission-Transmission. TIFF.

Besides. I like to work from this place right now. It’s easy to find.

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It begins.

The yellow diaries will be a place where I write about my personal journey.

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