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.
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.
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.
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.’
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:
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…
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.
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.