Lisa Ray

The Yellow Diaries

To all Fellow Yellow Diarists…

To all Fellow Yellow Diarists, Enlightened Friends and Supporters

There has been such a constant outpouring of love and generosity since I began the Yellow Diaries. As I prepare for the final leg of my treatment for Multiple Myeloma, a lot of you have asked how you can continue to support this journey.
First know that I am grateful for all your open hearted responses already.
Second: please do not illegally download the films into which Shamim, Hanan, Sheetal and I have poured our creative energies. Purchase The World Unseen and I Can’t Think Straight from the Enlightenment website and you will be supporting not just the films we created, but future film projects made with passion and integrity. Without this support, there will be no more. In addition, we the artists collectively cannot sustain ourselves financially if you are watching the fruit of our labour for free. Think about it- its difficult enough to remain true to your vision and passion. Working with Shamim and Hanan has been deeply inspiring and I would like to work with them again and again. I would like to continue to make my living as a actor committed to working on projects which illuminate and provoke. This can only happen if you express your support by buying the films.

Happy Holidays and a Yellow Wish for all-
Love,
Lisa

Operation Reboot Continued

Keep your chin up. Like a nosebleed.

I got that off facebook.

Ha.

Light precipitation tonight. All over my pillow. Every morning I wake to tickle from disengaged follicles. My hair is falling, my hair is falling! Evidence. Finally! The little piles make me think of the pleasant tangles washed up on the beach of Georgian Bay. Each length has a story, not necessary to know. But necessary to note. This reverse sowing that’s taking place on my head.

I am so relieved.

Suppose your hair doesn’t fall out.

This from Bobcat while shaving my head. He was concentrating on the back of my scalp. Two long Hassidic like sideburns framed my otherwise exposed face. An oversight or it just amused Bobcat to suggest eastern european origins. Wrong gender, but what the hey.

Whaddya mean suppose my hair doesn’t fall out?

I began to tug at the wispy sideburns.

I mean it would be funny if after you get buzzed, you don’t lose your hair. Ha!

Larry David eye narrow.

But EVERYONE told me they lost their hair. Sindi had thick, beautiful Indian hair. She thought it would last. Then it fell out in clumps in the shower one day.

I paused, captivated by the drama of it. An extreme Rapunzel moment.

You know Bobcat, every Cancer rookie believes they are different. The Cyclophosphamide or Melphalan is not gonna make ME pukey or constipated or infertile….

I’m special.

Well as it turns out, the Great Cancer archipelago is populated only by special people.

Who are there by special invitation.

Most of my words were drowned out by Bobcat’s buzzer. Even in my own head.

That’s why I’m happy I’m losing my hair. It’s a trap, but I’m entitled to this happiness. This increment of everything. So I enjoy the increasing spread across my head. There is a lot to be said for the impact of a shiny scalp. And never again will it be so acceptable for someone to find your hair in their food.

mazeltov

From the wispy wizardress.

So Operation Reboot Chemo began on November 23rd. The first step in mobilising those stem cells. Three days after that first hit, Neupogen or G-CSF injections began. G-CSF stands for ‘granulocyte-colony stimulating factor hormone’ and ‘I’m ready for my Master’s degree’. So the neupogen stimulates your bone marrow and increases the number of circulating stem cells. Chemo kills, neupogen grows, so you could say there’s an accelerated overthrow of the marrow status quo. A White Revolution without the KKK or the Shah. Then after a few days, you report to the Stem Cell Collection Unit. Blood is drawn and the results of the blood work, especially a test called CD34 decide whether you get hooked up to a cell separator device, known as an apheresis machine.

You can salute now.

It’s metallic transcendence.

Dials turn in steady sounds on the COBE Spectra Machine. I don’t know how to pronounce apheresis. But something close to sacred is taking place.

Or at least, they don’t let the sacred be taken away.

For a better description of the process http://goodbloodbadblood.wordpress.com/

Me, I don’t have the knack of objective reportage.

So I will digress.

I got my first neupogen injection at PMH on November 26th. After that a homecare nurse came every morning to affix sharp point to syringe. I insisted on two separate injections as one continuous plunge felt like a fountain on fat wings.

Talk to me. Distract me!

Dad blinked from the computer where he was researching MM. My father has walked all the earth and back in pursuit of a cure without leaving home.

Moved by the quiver in my eyes, the nurse started talking. She told me about a trendy clothes store I have never heard of and cannot pronounce. She spun a story about bargains and made in Bangladesh wares which made me forget the neat ways of her hands. And when it was over we threw the used syringes into a glass bottle.

I have medical waste!

Neupogen can cause bone ache. Or let’s say bone sensation.

Finally. A message from the marrow. Let it tilt back its maw and speak like a gloomy pelican.

Oh boy.

I didn’t know what I was in for.

Black merchandise.

Yellow bone.

Who has seen your bones?

Neither you nor I

But when you bow your head in pain

The marrow passes by

And Christmas is close. I have a list. It’s simple.

I wish everyone Critical Illness Insurance.

And for myself, a zygote.

Children: gather round and heed my advice. Ensure you have Critical Illness insurance. Most critical illnesses including Cancer are covered under these policies. If you are diagnosed, you should receive a tax-free lump sum payment designed to alleviate the financial strain and deal with non-medical expenses. Let me tell you- you don’t think about it when you’re a young raver and everything circulates around your pretty axis. You don’t want to think about it later when gravity takes charge. I hope you never have to cash in, but…

Think. About. It.

Or don’t think about it. Just get some.

I owe my first born to the Actra Fraternal Benefit Society. It’s my actor’s union insurance program. They are providing me with some weekly income benefits and helping to cover the cost of medication. That’s one thing they don’t tell you when you join the Cancer Club. Membership is honking expensive. If AFBS didn’t help cover the cost of my treatment, along with the Trillium Drug Program, I’d be donating my internal organs for a profit. All of them.

Hey that reminds me. I still have a ziplock bag of my hair.

Yellow Fever

This gives me Yellow Fever:

Dear Lisa R Ray:

Thank you for your recent application for Line of credit Critical Illness and Life Insurance

Unfortunately, we are unable to offer you the Line of Credit Critical Illness and Life Insurance coverage based on your history of cancer.

Buh.

Double buh.

How dare you brand me not by the perfumed magnitude that I carry within, but by this hard footed detour where my body takes me for the moment. Are you punishing me, are you marginalising me for a condition which arrived from some outstation we cannot pinpoint or know?

Do we need to stand off for a fistful of dust?

I want to speak and be overheard. And stretch wide because there’s space enough.

Makes me want to lower my bald head and charge.

Can you say ‘advocacy’? Will you sell light on the road with me?

I went to Wellspring, a non profit organisation which offers a wide range of cancer support programs. I went for advice on government financial assistance, cause, you know, I’m unemployed. And I’m gonna remain unemployed for a while. By the end of my meeting, Eileen had a sticky smile and had to rub her forehead a lot.

As a self-employed freelancer, I have no access to UI or unemployment insurance. Canadian parliament just passed a bill entitling us non-conventional workers to the same, but let’s see what happens. As for CPP or the Canadian Pension Plan, you have to contribute 4 years out of the last 6 to qualify for disability.

So, if you’re in Canada, make sure you contribute to CPP. Even if you are a self-employed shmuck like I was.

Except I contributed three out of six.

Um. You need a financial advisor. Eileen rubs her head one last time.

For the dead there’s land enough.

That Neruda. You can cross reference his every line.

So this Christmas, give yourself the gift of a little extra insurance.

And pomegranates. High in antioxidants. Dad wordlessly hands me a bowl every evening.

As for the zygote, I have not yet frozen my eggs. But I must. This morning I mobilised myself to a fertility clinic. I may need to delay my stem cell transplant to realise the hope for life in this life. A four celled zygote. We won’t call it Neville though.

That’s the name of our hairy baby. Bobcat and mine. More on that later.

Bobcat is back. I am at peace. This separation was not long. But it was too long. Yellow sobs and heart flutter became a cross country Bobcat ball breaking affair. We are entangled, we share a yellow soul. So bobcat out of the 416 is  a wasteland arrived. He’s the source and without him the Yellow hive goes silent. It stop with a shudder, all my insides.

I have not been like this before. Besides shape shifting my body, the cancer has shifted my psyche.

It will be ok.

La la la la la.

He runs his hand over my shiny head.

Where else have you lost hair? Hmmmm?

LAUGHSHOCK: the recurrent shock of laughter in life. Or life in laughter.

Bad Bobcat. You so bad.

Another Shuvo-ism: we recycle every single molecule in our bodies on average every 7 years, you are just doing an assisted clean up of your immune system a little ahead of schedule!

Keep me posted as you prep for your coming ctrl-apple-reset

December 21st, the solstice is called Borodin in Bengali, my father’s native language.

Borodin means

Big Day.

Ellen's Lawn

I’m back

I never left but I’ve been busy. Committing my flesh one place while my mind goes somewhere else.

Like yesterday. Critiquing another hospital drop ceiling, while a radioactive marker circulates in my blood. Par example. Why are ceilings not more user friendly?  Or counting to three and going to that tranquil pasture in my head while a Quinton Line is yanked out of chest.

No wonder I’m feeling fractured.

I am not feeling whole.

So I’ve been forging a smile. Then I show up. Friends help me cross thresholds and while we laugh and my mind is otherwise engaged, my body can quietly blubber away. I sit on the floor of Ted and Tara’s kitchen and hug Flora. Contact with a small, vital body is the antidote. My body unshrivels. Arm move without fear of IV reflux. Fuck the self-pity. Mental smack upside the face. We do what we are meant to do.

What we need to do is play.

Playtime!

Everyday has been playtime. More or less.

And we all know that playtime ends with fist shakes and tears.

That just about sums up my last two weeks.

Oh yeah- and I still have hair.

It’s growing, dammit.

But you wanna hear about the stem cell collection, right?

First, there’s a laminated painting in the stem cell collection suite in PMH, right next to the washroom when you first walk in. It caught my eye cause I have a thing for lamination. Under the painting, words. My next favourite thing is a laminated parable:

Ellen’s Lawn

An Analogy for an Autologous Stem Cell Transplant

During my stem cell reinfusion, a casual observer had asked for a description of the process. Dr Franke’s response, directed at me was, ‘You are a lawn’

My lawn had weeds, so weed killer (chemotherapy) was applied. The results of the weed killer were not seen for a number of days but the weeds slowly started to wither and finally died. Because the weed killer was so strong it also wiped out some of my lawn (bone marrow) as well! Then the rains (saline IV) came and washed all the weed killer away.

‘Today I’m planting your new seeds which will take time to germinate. In about a week we’ll add fertilizer which will help your newly germinated seeds grow.”

My ’seeds’ responded to the fertilizer (Neupogen) and pushed through the soil into the sunlight. With the light from the sun (nurturing) and all the special care, the new lawn became lush and healthy.

buh.

So like, I’m grass.

Yeah, I’m grass.

That’s why I’m feeling trampled.

Day one of harvesting is like any other. I know I’m gonna be hit with an ‘intermediate’ dose of chemo so I show up prepared: with Bobcat and a scrabble board. I am slightly alarmed that today, I get a bed. It feels considerate and ominous at the same time. Yellow quakes.

I haven’t met a PMH nurse yet that doesn’t braise my brisket. They are uniformly engaging and compassionate. In an un-uniform way.

So my nurse explains how the next four hours are going to go.

I am accessed. Port drip. Tube and plastic slide.

And GO

We begin a rabid game of scrabble. If scrabble were a contact sport, this would be the bloodiest rugby game on record. Played in the Collesium. With spikes.

It's a scrabble-off

Bobcat’s eyes go all scottish loch on me- opaque enough to hide a beast.

We yell. We challenge. I scoff. He snorts. I tug my  IV line. A little.

I even forget the liquid siege will burn through me for a while.

I throw down a ‘fez’. He tries to convince that ‘pos’ is a word. Nurse mediates. I want a scrabble dictionary for Christmas.

And then, ‘hitched’ takes my lead.

Bobcat win.

Dad enters. As we collect the pieces of words, Bobcat grips me with his eyes.

Remember how you felt. I want you to feel angry. And charged. Fight the bitse.

And he left.

Dad and I watched saline drip changed for chemo. Not the Velcade I’d been on for four cycles which was an antipasti pump into vein, but a primi secondi chemo. Acid drip for one hour. And at the end: nausea, fatigue, hair loss and other assorted dolci.

I even get pink ice. Apparently this counteracts the sudden sinus congestion and headgroan when the poison hits your bloodstream. You know, brain freeze fixes just about anything.

Obama want a popsicle?

THE solution to all your ills

From what I gathered, this first blitz of chemo helps to mobilize blood stem cells.

Stem cells, of course, are thought to be the origin of all blood cells. They live in bone marrow and are capable of producing red and white blood cells as well as platelets.

They are the thespians of your organism. Eager to morph into something else.

And three days after chemo, Neupogen shots begin.

And then you begin to mobilize.

A very worthy endeavour I’m told.

But before that, my saintly father took me home.

Saint Salil, my dad

I fell into bed. There I remained. For the next two days.

Later that week, Bobcat had to leave Toronto on work. Before, I had strength not to notice his absence. Now my sight costs me. I’m not sure if we can make it. I hope. But I’m not sure.

Everything is wounding me on this vigil.

If I had to describe a stem cell collection, I’d say it’s like watching a jet refuel.

There’s something significant going on. You can feel it. It’s awe-inspiring and essential. For what will come next.

Full flight.

But truthfully, there’s nothing to see.

It’s downright mundane.

Except, you know, I got the whole spectrum lighting experience. Even threw in a dawn simulator along with a hearty dose of Seasonal Affective Disorder (SAD). So I have tales of Quinton lines, and other assorted drama to share.

And unpeel.

It’s damn cold today. I”m not into Toronto just now.

As my log burns low, a Yellow Delivery. News from Andrew Winters, the transplant coordinator.

My Stem Cell Transplant is scheduled for December 21st!!! In Hamilton.

Grace.

And Grit.

A book recommended by Moira, Grace and Grit. I started working with Moira on healing beyond the body.

Tomorrow a playtime with words. I will be reading at the Small Press of Toronto (SPoT) Winter Fair at the Gladstone Hotel. I am not sure what to do. Many other experienced wordsmiths will be reading too. I will watch them. Then I will breathe in a way which hopefully doesn’t make me light-headed. Like during my Pulmonary Function Test last week. Which I think I failed.

I am frightened in a way which makes me forget the Cancer.

I am frightened in a way which makes me feel alive.

And I will remember:

Exactitude is not truth.

Thanks Matisse.

You’ve given me some copy to live by.

And on December 13th, a kirtan for Carrie Lundy’s mom Audree. Audree was diagnosed with advanced colon cancer last year. Recently her doctors sent her home. Audree and her daughter Carrie are fighting off feelings of defeat in Winnipeg. My Moksha yoga sangha will be doing a traditional call and response chant for Audree Saturday evening. Sometimes the best response is to sing.

We’re singing with you Audree.

News from Shamim and Hanan. Enlightenment Productions has raised an additional $5000 online for the David and Molly Bloom Multiple Myeloma Research Chair at PMH.

Whoop whoop.

Mane Tamer

Evening before my stem cell harvest, I open ‘The Winter Vault’

‘No two facts are too far apart to be put together’ Anne Michaels writes.

Witness then, my exaltation.

And my fear.

Side by side on a bench. Thighs touching.

My enthusiasm and my exhaustion. Cuffed to each other like greasy inmates. Origins long forgotten.

Me and Bobcat-man.

I have to start where I am.

One paw in front of the other.

I had this dream where you told me you wanted to be a lion tamer, Rachael wrote recently. Please unconfirm asap.

Can’t do that Rach. My experience of living is shifting so quickly I need props. Got me a whip and chair. Metaphorically. Got me an MM beast to dance with and tickle-tame.

It’s been a month since the MM5Kwalk. Every time I sat down  to write, I slipped. My seat was slippery. My fingers could not curl. Living differently already, my mind struggled to register what my body knew.

So some pulpy experiences. A trip to Connecticut to attend the MMRF Gala aborted two hours away from my destination. I stopped driving in a small town in upstate NY. It had been raining dramatically the entire day. A meal at Dan’s Fish Fry and I fell alseep watching My Super Sweet Sixteen on MTV with images of squealing teenagers in my head. Hmmm. I woke the next morning with deep bone ache, fever and gummy eyes. So I drove back to Toronto only stopping once at the border to buy a Mongolian Warrior Vest. At a deep discount.

Cancer sprees should be tax-free.

Instead of disappointment, another barrier melts. I had just finished chemo a few days before. And I tried to get to the gala, in the way I knew best. So I grew my heart, and shrank my judgement. My intimacy with myself expands. The split in myself slowly seals. Yellow caulking.

Yellow reminds me of turmeric. A healing yellow. Now that chemo fog has lifted I’ve been trying to eat well and incorporate ayurvedic principles back into my lifestyle.

A pause in treatment. From end of chemo to now a different sort of Flush;

A visit from Shamim and Hanan. A Full Remission. A Remission Rock from Bobcat. A NADA fashion show. Another eye infection as payment. A visit with my eggs. A dream of zygotes. A Cancer Documentary. A reclamation of  my body. An interview with Anne Michaels. A revival of my brain. Of my traits. Shingles. Oil of oregano and travel to new old world Buenos Aires to prepare metaphysically for the next chapter of treatment, thanks to Dr. Galal’s support. Sol Vichez and Ambassador Viswanathan. Eenam and ‘rosy salmon to the grill’. Che boluda!

And on Wednesday, the inauguration of the David and Molly Bloom research Chair for MM at PMH. One month to the day of the MM5KWalk. I put on my Mongolian Vest and gathered with fellow lion tamers. Shane-Saunderson-in-a-suit (http://prairiepedal.blogspot.com/) tried to slip away when he was lauded by David Bloom. Me, I LOVE people who avoid attention. I can relate.

Which is why I became an actress, of course.

The mood was buoyant Yellow. I recall purple bloom of jacaranda trees in Buenos Aires. Something stirred and lifted. In the seventh floor atrium, padded by optimism and the shine in Dr Reece’s eyes, I feel: hope has a scent. It’s the smell of the rogue cells as they are washed away.

You can only smell it now its washed way.

And I thought of Frida Kahlo. The ultimate lion tamer.

Molly Bloom thoughtfully gifts Dr Donna Reece, a gorgeous painting which suspiciously resembles mine and Bobcat's potential zygote

Gracias to everyone throwing themselves against this new frontier. This research chair at Princess Margaret is buying us MM club members time. Until the cure. I’m a porteno, a traveller arrived, and I’m not protecting myself from the frontier mentality.

So a triumph on Wednesday November 18th.

I feel like Nadama’s favourite plant, I cannot make flowers yet.

But I can make leaves. A lot of fleshy leaves which grow and grow.

Charlie Bravo: cumulonimbus clouds on the horizon.

Stem celling. A waving field of yellow cells to harvest.

Undifferentiated of course.

My stem cell procedure begins on Monday. Tomorrow. So I donned a disciple’s robe and surrendered my hair. Bobcat buzzed my head on Friday. The harvesting of my cells starts with an intermediate dose of chemo. And hair loss. If not immediately, then it’s bound to happen one day in the shower. So, thanks to Bobcat and his professional clippers, no more barriers to suffer. I can transcend now. A reinvention. A purification. And a transformation. From the inside out.

woo.

I’m a little scared.

This Cancer membership comes with some heavy terms and conditions.

I did an uplifting workshop at PMH called ‘Look Good, Feel Better’ (www.lookgoodfeelbetter.ca). It’s a free 2 hour cosmetic and hair workshop for women with cancer. I love the idea of incorporating ritual into this stem cell purfication every morning. Of drawing liner over my eyes and dabbing outrageous gloss in the middle of my bottom lip. And I will meditate on my breath every morning. To live well and with precision.

Mongolian fur feels gooood on hairless brown scalp

No wigs though.

I got up and danced after Bobcat shaved me. I like the feeling of movement on my scalp. I’m transformed by sensation.

Ya know what I mean…

Like the H1N1 shot. The sweet throb that goes on and on…

And no more volumising shampoo. I’m gonna save a ton of cash.

Might help with the the drug bills. I may have to be on medication for the rest of my life. This calls for a poll- with fellow MM club members, not just oncologists. There are options that only another patient can illuminate. Straight up.

Imagine all the cash I'm gonna save: John Freida eat your heart out

Tango style 34 in champagne blush a tad too flirty pour moi, perhaps?

I want to caulk the gap between us. Yellow caulking. Keep you close during my practise. Practise of a new way of life.

‘Certainly travel is more than the seeing of sights. It is a change that goes on, deep and permanent, in the ideas of living.’

Mind the gap.

I’ll be closing on it fast.

Thanks for your patience fellow Yellow diarists. From here on in it’s wordspill. Even on my tumblestack days.

National Stem Cell Awareness week just ended on the 21st. Get in touch with onematch.ca to find out how to help one of the hundreds of patients in Canada desperately looking for a donor match.

And beso to Elrica Saw for her gift. She sent me ‘Anti cancer: A NEW WAY OF LIFE’ by David Servan-Schreiber.

Sure David. You and I and Henry Miller concur.

‘One’s destination is never a place but rather a new way of looking at things’.

And thanks Shuvo for the hint: if you read or hear or watch things that make you laugh while getting G-CSF prior to harvest, your CD34 count ought to rise faster. T-cell levels correlate with that amused feeling!

Thanks  to Myeloma Canada for coordinating and motivating the MM5KWalk. A Yellow Bond.

Team Myeloma, raised over $23,000 for the Bloom Chair, and the Yellow gauge still rises. I want you to know you are part of the Lion Tamer’s circle of Yellow. There’s a direct link from your generosity to Multiple Myeloma Club Members. Thanks David and Molly for the possibility.

As David  puts it: keeping us alive, from bench to bedside.

In the meantime.

Joytear.

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.

MM5K Walk

Hello Yellow Diarists:

I leave this Yellow ‘Post it’ on our Communal Corkboard to let you know I’m travelling out of Toronto to Vermont for a retreat which will be led by my friend Laura Simms. This is my week off chemo and I’m running for the hills. Laura is an entrancing professional story teller and humanitarian and has the eyes of a Devi. I will blog from Vermont. I have drafts.

Now I only have time for a short espresso blog. Ristretto?

I’m off steroids and I need to sleep. I forgot that’s what the night is for.

Just returned from my friend Joshua Bell’s concert in Toronto tonight feeling many things at once. Spilled veins. Heart tips. Tiny wings alive on the surface. Music opens the door of feeling in me. I used to spend hours listening to Wong Kar Wai soundtracks. There’s a line in ‘In the Mood for Love’: ‘at least she was always the heroine of her story’. Yup, that was me.

Then came Goldfrapp.

Tonight was surrender to a violin. If you have seen one of Joshua’s concerts you will know what I mean. If not, see him perform. I will not try to explain. I am overjoyed we have this in the world: art, music, FOOD, transcendence of words, time, logic…

Taken a milli-second before they asked you to turn off recording devices...and 5 days after 'Cooking with Stella' was screened at the Thomson Hall

Taken a milli-second before they asked you to turn off recording devices...and 5 days after 'Cooking with Stella' was screened at the Thomson Hall

Spent a long day on pause in the hospital. Next time I’ll bring my scrabble board or begin a spontaneous game of Bingo in the waiting room. After Noni left, Dad and I shared the same hunting magazine, ‘Ontario Out of Doors’, circa 2006. I learned a lot about cross bows. I’m not complaining just trying to inject some yellow into the pauses.

Dr Galal handed me my latest reports with that gleam in his eye.

Almost FULL REMISSION.

Joytear.

We’re not in the FR Club yet, but I’m filling out all the preliminary forms.

Then I went up to the 18th floor to get my eyes checked. My left eye was swollen as a baby slug when I woke the day after the ‘Stella’ premiere. Turned out to be a sty. My immunity is low, so the infection has travelled to my other eye now. Seema has dinner with me before leaving for Sudbury and then India one evening and tells me to wash my eye with warm water and salt. She has seen technicians on film sets in India do this. And then go back to squatting with lights in precarious places. I think I can be all enigmatic and wear shades until my eye clears up and I grow a hump on my back to replace this latest alteration to my appearance.

We have a public screening for ‘Cooking With Stella’ on the 18th of September. I arrive in Paris Hilton sized sunglasses and yellow sneakers. I feel strange. I already feel like I’m having an out of body experience most of the time due to the medication I’m on which is plucking at my nerves. But now I’m dressing the part.

Deepa will rescue me. I unveil my eyes before we go into the theatre for the question and answer session.

‘I’ve got an eye infection. Shall I wear my reading glasses?’

‘Put your shades back on.’

Dilip dedicated the public screening to me. I am butter. With Canola oil. The Spreadable kind. I am without words in front of this onslaught of support and love. I”m already inept in social situations. I think it best I remain mute.

but don’t block the exit.

Can there be a thing as too much love? I think not! Unless it prevents you from learning to tie your own laces.

I want to thank the crew at ‘Psych’ for the laughs and for helping me Stay Encouraged.

Seema and Shriya...enroute to Roy Thomson Hall

Seema and Shriya...enroute to Roy Thomson Hall

Michelle Krall Wigmore and Sindi Hawkins for their gladiator spirits and guidance.

Don Mackellar for sharing the rickshaw. Thanks for the lift- in every way.

Don and I getting a lift in the rickshaw...except you can't see it so trust me. buh

Don and I getting a lift in the rickshaw...except you can't see it so trust me. buh

Dilip, Deepa, David for that family feeling. And teaching me to fight for what feels right.

Garden Sarees and Shilpa Shah for establishing a supportive connection that transcends fads and fashions.

Tina and Noni: for always prospecting with me for lightness.

And  Yellow Diarists everywhere. You move marrow and help me prospect my inside.

Before leaving tomorrow morning and before my next post, there’s this;

I’m doing the 5K walk for Princess Margaret on October 18th. Shane Saunderson (http://www.prairiepedal.comcycled 3500 km across Canada to raise $35,000 for Myeloma research. Together we are Team Myeloma. I’m thinking I gotta whip it. If Shane can do this and Bobcat can cycle 800 km in 4 days for Cancer, well, a 5k walk in Toronto is just a warm up.

I am already grateful for your support and would be grateful for your sponsorship.

So this is my warm up 5K for Princess Margaret and Myeloma. I know this isn’t the best of times to hit you up but whatever you can contribute is appreciated: including goodwill. No gauge on a webpage for that but we feel it. Contribute and get a free blog. Ha!

More research translates into more options in treatment which translates into a longer lifespan for members of the Multiple Myeloma Club. And then chances are increased we can find a cure in this lifetime.

Here’s the links:

Personal Donation Page:

http://pmhf3.akaraisin.com/Pledge/Participant/Home.aspx?seid=2489&pid=172578&mid=9

And

Team Myeloma Canada:

http://pmhf3.akaraisin.com/t/myelomacanada.aspx

Thank you. For the tender space and glueing with me for a while. Thanks for walking with me.

This is from Susan Sontag’s  ’Illness as Metaphor’. Mind tickle;

‘Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds a dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.’

Next post: Beluga whales and deer that pinch. And insurance. Buh.

next up: Everyone Loves Marineland!

next up: Everyone Loves Marineland!

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.

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.

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