Month: September, 2009

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

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.

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

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

Sleepless in Toronto

It’s 6:30 am and I have not slept.

That’s another thing about steroids. They make you really hyper.

And I blame you India. You have sent me so much love. And advice. So I went through each and every message. Like the good, dutiful half-bengali daughter I am. Except I’m not studying for my medical finals, I’m looking at each and every word you have sent.

So even if you’re not into my writing, the comments section is so full of eloquent, interesting, quirky or down right entertaining snippets long and short, it makes the blog worthwhile. I’m humbled. Plus it seems we are creating a Yellow Library where anyone can find information, support and inspiration. From around the world. I got a message with a great suggestion: why not create a ‘Yellow Diaries’ forum. What do you think?

I also got a request to make the language simpler. Which I’ll do- sometimes. The point is to connect and share. English is not everyone’s first language. Nor should it be. I wish I could speak more languages.

But the language of the marrow. Now that’s one that penetrates.

Thank you for teaching me the goodness of being alive.

So a few thoughts on alternative therapies.

I was in Kerala on a yoga/ayervedic retreat when I had to have my first blood transfusion this year. That was in March. I’ve been practising yoga for ten years now. I go to Dharamsala for month long silent meditation retreats at Tushita Meditation Centre once a year. And then on the other end I chant Mantras for hours. I also practise vipassana, Metta, Shambala and as many other meditation techniques as I can find. My cupboards are full of naturopathic, chinese and homeopathic remendies. I consider myself a seeker and a student of many spiritual traditions. I’ll write about this one day, but I suspect it might be as full of capers and misadventures as deep insights.

I’m an ‘alternative’ girl in every way.

However when I started my treatments which is not long back, I did not want to mix. My hematologist, Dr Ahmed Galal put me on a relatively agressive, first line treatment because he got that look in his eye: we’re getting membership into the FULL REMISSION club. But you know, it takes time. Like getting into the Breach Candy, or Otter’s Club. You apply then you gotta be careful which members you mix with as you go for your interviews. Slowly you learn more about the club, the conditions you need to fulfil- then you’re in and believe me: even an earth shake won’t get me out!

So right now I’ve chosen not to mix therapies. There are even some things I love like green tea and grapefruit (well, ok, no one loves green tea!) that I can’t have as it works inhibits the work of the drugs I’m on. I have faith in this course of action. I am aiming for a stem cell transplant and to be symptom free by December.

Then focus on alternative therapies to rebuild full, wholesome health.

Even if I’m still a puffy Mammacita! As long as I’m healthy.

All your advice is appreciated. And I think we can all learn from each other. So keep it coming!

Thank you again to my hematologist extraordinaire Dr Ahmed Galal, warrior queen Pauline and everyone at PMH.

Thank you Shamim and Hanan for the words and love.

Dr Shailesh Raina for always rallying with your endless energy and fierce compassion.

Thank you to my friends and colleagues there who have reached out or expressed their support. I send love and hope to connect with each of you in the real world.

For now we have this.

Oh btw: http://www.thestar.com/entertainment/tiff/article/693366#survey

The media here is reacting with support and sensitivity. I guess many actors or people in my industry rarely go public. I understand why. There’s practical repercussions as in, its become more expensive to insure you on a project. Some producers don’t want to- or can’t- take on that extra cost. So even when I’ve crossed over and joined the ‘Full Remission’ Club, there may be tough career and financial decisions.

It’s hard for me to live any other way than with full disclosure.

I would love to hear how many of you are coping with the practical repercussions of living with cancer or a chronic disease. Do you hide it from work colleagues? Are you able to live openly with your condition? How is your personal and professional life affected? I am fascinated on multiple levels and I think many people would benefit from sharing these stories.

A quick word about support and care givers. I got an email from another member of the Club here in Toronto whose wife was treated at PMH and has been in full remission for 5 years.

I read with interest your comments relating to the support that you receive from your Father. If I may, I would like to make one suggestion to both of you. Your closest Care Givers are also part of the effect of MM. As you are both becoming aware, dealing with Multiple Myeloma is a marathon event. The focus rightfully will be on you, as the patient, never-the-less your Father will also feel effects that will be difficult to balance together with his concern for you. If he is like most Care Givers, he will manage with his effects silently and in the shadows of your treatment.
Let him know that he too is not alone.
‘I read with interest your comments relating to the support that you receive from your Father. If I may, I would like to make one suggestion to both of you. Your closest Care Givers are also part of the effect of MM. As you are both becoming aware, dealing with Multiple Myeloma is a marathon event. The focus rightfully will be on you, as the patient, never-the-less your Father will also feel effects that will be difficult to balance together with his concern for you. If he is like most Care Givers, he will manage with his effects silently and in the shadows of your treatment.
Let him know that he too is not alone.’
thank you for bringing this into focus.

Blue talks never go out of style.

But Yellow Talks rock.

Dip in.

And here’s a photo of me last night. After filming for Plan. I’m well. I’m getting so healthy and so round after years of being depleted and thin. So much that when I walk around into corner stores now, the owners start to suspect I might be a high school prankster with sticky fingers. ‘Only three kids in here at one time’ the guy behind the counter told me the other day. Baby cheeks getting me in trouble.

Picasso said, ‘it takes time to grow young’

But this is really not about me.

Let’s share some more stories.

Don't just trust anyone with your subcutaneous fat

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:

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!

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.

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.

It begins.

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