It feels important to me to revisit the ‘Yellow Diaries’.
I began chronicling my experience of getting membership into the ‘Cancer Club’ with a diagnosis of an incurable blood disease called Multiple Myeloma in the summer of 2009.
I was told initially- whatever you do, DON’T google it.
So of course I did.
It was terrifying. But I was determined not to be a statistic.
Six years later I’m still here.
Much has changed for patients of MM in the last few years, due to the plethora of new drugs, treatments and unbridled efforts of people like Kathy Giusti of the Multiple Myeloma Research Foundation (http://www.themmrf.org) who was diagnosed at 37 like me- ten years before me when she was given just a year to live.
Kathy is still here. And making real change. Both for MM patients and the world at large.
It’s time to gather myself, remember what has come before.
I think sometimes we forget for the sheer delight of remembering.
And listen- there’s no disgrace in not having all the answers. I think there’s great value in not understanding everything.
Because that’s what makes you ask. And seek. And try.
September 7, 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 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.
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.
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.