Category: Never Stop Fighting

Make MM Matter: Scrapbook of a Cancer Graduate

Indian Vogue-ing with my chemo cut

Bonus! Fabric flies, but my chemo cut stays put

One year anniversary of my coming out at TIFF- Thanks to the Globe and Mail for putting the story of a Cancer Graduate front page and center

Back in the Business of creating illusions: hair is borrowed as is the dress

NY shoot for Rado Watches- sneak peek and thanks for the support

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!

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.