Category: The Yellow Diaries

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.