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 labcoat 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.
And I regret I can’t take all the credit for the whining of the last post. I’d like to share the statuette with my fabulous writing partner, Decadron. Doesn’t she look chic tonight? (say yes or she’ll take your eyes out)
Is this Chapter 2 of the Yellow Diaries?
Or maybe it’s the wine.
After my last blog, I let my body take the lead. I watched, fascinated, as my body dressed itself, pulled on snow leopard printed socks and picked up my car keys. It was a body intervention. All done without the cooperation of my brain. It needed to be done.
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.
I’m not supposed to, technically.
And then I drank wine.
Sometimes you let your body lead. The body knows where it want to go.
So between the wine and whipped cream, I felt I had found the cure. For chemo brain if not for MM. You just gotta get unknit.
I didn’t have a clear reason to be blue last week. My last chemo treatment is today. I’m getting weaned off the personality altering steroids. I have a ‘port’ which means I don’t get poked anymore. I like my port now. You can’t tell it’s there unless I point out the little button beneath my skin. Makes it kind of kinky. Cause it’s buried below my right shoulder just above my boob. Gives me an excuse to flash all the time.
Bobcat digs it too. Since the steristrips have fallen.
Go ahead. Poke my port.
I even have a card. I carry it with my credit cards.
‘This patient has a Vital-Port Vascular Access Device Implanted’
Don’t fuck me with!
And I’m not patient.
There’s an entire port culture. It’s like a subtribe of the Cancer Club. Nurse Gilda at PMH does it with a sweetness at odds with the words:
‘Ok honey, I’m going to access you.’
This always thrills me. It makes me feel like a Japanese Manga Astro Girl. Access my Vital Port. Feed the Vitaler part of me, make it bold and decafinated and make me nothing greater than human, Sensei.
I filmed an interview with Rosy for ET Canada yesterday. There’s a strong sisterhood of support which transcends disease. I give it a colour:
I’m rolling in yellow now. Spreading slashes of yellow across my rapidly deflating moon cheeks. Sholeh from ET Canada gave me a flip video HD recording device for the MMwalk on Sunday.
Does she realise what she’s unleashed?
I’m gonna be participating in and watching my life at the same time.
Sindi got me thinking about travelling with a duck billed mask. Or a painter’s N95 mask. Reserving the seat at the front of the aircraft.
‘I got the Cancer. Give me your best seat cause I’m immune suppressed! And pilot food. Got a prescription for Pilot food people!’
Sindi and I also got thinking about the influence of metaphor in how we approach cancer. How we cope with the things we fear by declaring war on them. How we don’t want to be defined as cancer ’survivors’. I don’t know how I wish to be defined but I’d rather chance on it myself. I’ve taken Susan Sontag’s ‘Illness as Metaphor’ from the parents of Perfect Propaganda Baby, David and Suzanne. It may give me a clue why this war metaphor troubles me.
After all, where’s the enemy?
It’s in me.
I’m thinking about losing my hair. It’s gonna happen during the stem cell transplant. I have shaved my head before for a film called Water. This time it’s different. I may grieve for my loss of choice. Or I may not.
And Suzanne’s ‘Propaganda Baby’ Jackson got me thinking about freezing my eggs. Leaving frozen bags of my essence in steel containers across the city.
I’m thinking about stem and marrow. Protein on the surface of white blood cells. A new geography to explore. A new land, new symbols to read in the sand.
I”m thinking about onematch.ca the stem cell and marrow donation network. Shamim and Hanan want to register when they arrive in Toronto on the weekend. They are generously bringing their veins along with seven spices and Tord Boontje chandilers.
I’m thinking about Warner and his journey. He’s just ahead of me on the MM belt. He’ll be walking on Sunday too. His friend thought of a name for his team but he went with another.
‘Bad to the Bone’
I wish I’d thought of it. It’s not prophetic. It’s playful. And life is a leela, the hindus believe.
It’s all theatre dahling.
I was Lisa the actress. then I became Lisa the actress with Multiple Myeloma. What will I be in this next chapter of the Yellow Diaries?
Me and bobcat are gonna go see ‘Where The Wild Things Are’ just now. And then line up shrimp feet. Yes, that’s what he does my bobcat.
And, tired of donating with a dry click of the mouse? Looking for an innovative way to support the MM5Kwalk on Sunday?
Too eccentric and special to contribute the traditional way?
I’ve got the solution for you: http://www.etsy.com/view_listing.php?listing_id=23083708
Ray of Light, an original painting inspired by the walk…
Thank you for supporting the Yellolution