First Person | The yellow diaries8 min read . Updated: 06 Nov 2009, 08:42 PM IST
First Person | The yellow diaries
First Person | The yellow diaries
In June, model and actor Lisa Ray was diagnosed with multiple myeloma—an incurable cancer of the white blood cells. In between getting blood transfusions, trying to retain a normal life and attending press conferences for her new film, Ray decided to write a blog: The Yellow Diaries. Partly sardonic, partly heartbreaking, it’s a glimpse into her personal journey and the journey of those who are battling cancer. Edited excerpts:
From the marrow
7 September 2009
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 haemoglobin had fallen to levels where even a dedicated bloodsucker 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?
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.
LIVESHOCK: the recurring shock of being alive. More on this later.
Don’t get me wrong. It’s true the deepest crises are moments of great opportunity. An event that shocks you into seeing with the 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.
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 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 storyteller/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...
8 September 2009
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 6,000 Canadians. Every year, approximately 2,100 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, it’s 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 beaten. So I’m going to do everything I can to wrench the spotlight to myeloma and cancer awareness.
I believe it can be cured.
That’s the Dirty Realist in me.
...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...
...On August 4th, Toronto International Film Festival announced its line-up for its Galas and Special Presentations for the Canadian Section this year. I have a 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.... 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: It’s okay to cross over from ballroom to Chemo Daycare. There was one difference: The press conference was more stressed. And no juice boxes. Bummer.
Ring my bell
16 October 2009
Today is Diwali. The Festival of Lights in India. In the night we light oil lamps to signify the victory of good over evil within an individual.
And then you gamble.
Faith and chance.
Today is also my last chemo day. And wouldn’t you know, I’m gonna miss Chemo Daycare.
Welcome to Chemo Daycare’
You can get used to anything. Adaptable buggers we are. And I will miss the pager. When you check into the Chemo Club House, if you’re in the know, you can lean over the counter and make a secret gesture, like you are about to open your kimono and they hand you ‘the pager’.
It’s long and vibrates in a most alarming way. If you’ve got the pager, you’ve got free range of the entire hospital grounds. So you can wander to the atrium to snack along to the noon time concert, go down and mess with them at pharmacy by trying to sell back your steroids or Ativan at a profit, or pinch a lab coat and do a bone marrow biopsy or two.
And then the pager would begin to vibrate. Stridently. And I’d meander back to be admitted into the clubhouse. Pastel walls and warm blankets. Last few times, I brought my Scrabble board. If I could, I’d crack open some red wine and invite the nurses to, you know, play a board game, cause they feel like the kind of family you want around.
Today, I will ring the bell.
There’s a bell by the door. You ring it once you’ve completed your cycles of chemo, once the requisite amount of toxicity has dripped into your vein.
A chance for renewal. This bell, its sound a moving of molecules against each other. To remind us we are like these particles, membranes touching but at our core, alone.
I cried when others rang the bell. I don’t know how I’ll feel today.
But I’ve become a participant in my life again.
Yup, things are looking up since I came down from the roof.
I’m deflating: The wetsuit is rolling off mamma! And I’ve stopped leaking yellow.
Food is no longer the centre of my universe. I haven’t had a pepperette in days. I’ve started picking up the phone, combing my hair and speaking to real, live people instead of my inner tea party of one...
...My body presented itself in front of my friend Ronica’s home. Inside there was warmth and quail. It was, after all, Thanksgiving. Ronica was slightly startled to see me, I’d sounded so blue in the morning when we spoke. But at Ronnie’s gatherings the people and food are variously textured and arrange themselves in surprising new ways. The evening began with Sang’s entrance, proclaiming from Rilke. Cut to Imali and myself taking an experimental attitude towards whipped cream. It ended up everywhere except on the pie. I tipped my moonface back and took the spout into my mouth.
‘That stuff is toxic, Lisa. So bad for you’
I paused in mid-spray.
‘What’s gonna happen Jules? I’m gonna get, THE CANCER?!’
Eyes widen. Pause in mid-breath.
Collapse with wild, loony bun laughter.
And then I had wine.
To read Lisa Ray’s blog, visit www.lisaraniray.wordpress.com