Yellow Diaries is moving to http://blog.lisaraniray.com/
Let’s not think of this as change
But a glorious uncertainty when it comes to uniformity
Come to a new place of refuge where I can share my Battle Fatigue and ‘Sharpen your Saw’
I’m back from Rishikesh.
The holy city of hindus. Located in the foothills of the majestic Himalayas.
Ganga darshan.
A glimpse beyond the bag of bones.
Spiritual theatre
Passed many shaven pilgrims. I have a new vision of myself now. In this city of mystics, mendicants and seekers, my tonsured head blends in.
My dad and I sat by the side of the Ganges and dipped our fingers in the sacred river. He placed his hand on the crown of my head, leaving droplets in my pilgrim fuzz. We watched the faithful immerse themselves. Flashes of flesh, fabric flung away, a human ache meets the waters.
The waters cleanse it all away.
It is said.
More on the gathering place of the Rishis later…
On the B side, Cooking with Stella will be releasing in Canada soon.
Remember vinyl records? There was an A side and a B side.
India right now feels like the A side of my life.
A message from Dusty in Dilip Mehta’s office:
The Indian Film Festival of Las Angeles has invited Cooking with Stella to be a Gala presentation during their festival (April 20-24).
The festival would like the Gala presentation to also be a benefit screening to help raise awareness and support for the Myeloma Research Centre in California (http://www.imbcr.org/ ).
Another yellow memo:
We are very interested in educating Ms. Ray about the Institute for Myeloma and Bone Cancer Research in Los Angeles, California. Our offices, located near Beverly Hills on Sunset near Doheny house a comprehensive oncology clinic and state-of-the-art research laboratory. Our CEO and Founder, Dr. James R. Berenson is one of the leading physician/researchers in the field and has created many of the novel therapeutic drug compounds used by myeloma patients world-wide. The Institute works with most of the world’s largest pharmaceutical companies on testing and designing new myeloma drug therapies. Dr. Berenson is an international speaker on the subject and has published over 700 professional papers on the diagnosis, treatment and potential cure for myeloma. More information on Dr. Berenson can be found at www.berensononcology.com.
The news of Ms. Ray’s continued improvement is certainly encouraging, and I understand that she’s currently seeing treatment at Juravinski Cancer Centre in Hamilton, ONT and not Los Angeles. I know that Dannielle and Brinda are located in Los Angeles, not far from our lab and offices. If Ms. Ray is ever in the Los Angeles area, we would delight in giving her a tour of our impressive facility, introduce her to Dr. Berenson (sought by myeloma patients world-wide for his second-opinion consults) and maybe… get her autograph! We are big fans!
If Ms. Ray could kindly “link” our website, www.imbcr.org on her blog– we would certainly appreciate the exposure. If you or Ms. Ray have any questions, or would like to speak with Dr. Berenson regarding Ms. Ray’s treatment – please do not hesitate to contact me to arrange a consult.
We look forward to your response,
Cheryl A. Cross, MPH
Institute for Myeloma and Bone Cancer Research
310-406-1035 direct
866-900-1035 toll free
And here’s a must-read article about MMRF Founder and CEO Kathy Giusti. The article discusses in Kathy’s own words, her experience living with Multiple Myeloma, her advice for patients and families living with a diagnosis and describes the instrumental role Kathy’s pharmaceutical and business background has played in the MMRF’s success in advancing the next generation of treatment.
http://www.parade.com/health/2010/02/25-kathy-giusti-misson-to-cure-multiple-myeloma.html?index=2
Kathy was diagnosed at 37, just like myself.
She is a Yellow Warrior. And my special Guru. I called Kathy a few months before, in the middle of a watery moment during chemo. As the liquid burned through my veins my mind turned to crisis.
And then Kathy was on the line. She somehow placed her hand on my brow, from a distance.
And I felt calm.
Just as I had sitting at dusk today, by the river with my father.
Sometimes the world is so beautiful and so fierce I can feel my heart tear.
I would like to be around for some time more.
Bobcat just had knee surgery. With my seeking on the ‘A side’, and Bobcat healing ‘B side’, we maintain a strange symmetry. Still, I wish I was close.
And a message from Rahulji in Goa:
Please come back soon. No one does handstands on the beach with me anymore!!
And Tishani is finishing all the ganaches before we get to them…
ah yes. I haven’t written on Goa yet because I’m trying to formulate a way to do it without reference to exact location. My friends are adamant of protecting the privacy of their favourite resort.
Time is coming to flow down from a higher place to sea.
Like the sacred river.
Posted in The Yellow Diaries | 616 Comments »
I land in Mumbai on February 15th.
The immigration officer looks at my passport, glances up at me, looks down again then fixes me with a stare
‘Madam….’
A pause. Is my Visa legible? I really need to get my PIO card sorted.
‘Why you no have hair?’
And while it’s tempting to lean forward and whisper, ‘Shampoo- very expensive’ I’m travel weary and mindful of my special cargo. World’s best and possibly freshest stem cells. My yellow babies are crying out for a nap.
‘Because I just had a stem cell transplant’
One can never look sincere enough for an official.
‘For the Cancer’ I offer helpfully.
Officer Shirodkar nods knowingly.
‘Yes, yes. Medical tourist.’
And with that, I have no choice but to surrender to this place.
India is my most complex lover. And I’ve had complicated relationships. Believe me.
With this infuriatingly endearing exchange behind me, I touch the soil of the most infuriatingly endearing land I have ever known.
Who am I showing up as?
A courtesan, a wounded child, a seeker, a poser, a believer?
A celebrity?
Or just a medical tourist.
buh.
‘Alighting Point’ it says in the Chennai airport. And its a good place to begin. I cannot comprehend the whole. Not yet. But the narrative needs a place to begin.
And India moves quicker than my eye.
I’ve packed wigs for my Rado store appearances in Bangalore and Chennai. Not to pretend. Not for approval’s sake. But because it occurs to me that my scalp may be shiny. Don’t want to blind any photographers during our store promotions.
Ok maybe I am a little apprehensive. It’s my first public appearance.
So I trot out my ‘First Lady’ hair helmets for Aarti and Ujjala’s approval. Will it be the flirty bob or the heavy, long mane? I’m just going for less Nancy Reagan and more Michelle Obama.
At some point the ‘Nancy Reagan’ lands up on Aarti’s head.
‘When one is fat, there are certain things you should not do in public…you should not eat chicken legs- or wear a short hairpiece’
Aarti’s delivery rivals Ricky Gervais. Or any other comic of the moment.
And she’s beautiful. Even without working to be less weighty.
Which brings me back to my own pilgrimmage. I’ve got the shrinks. I’ve shed my steroid induced wetsuit, my immunity is no longer making jokes at my expense. I’ve shrugged off my fat brush moonface like a heavy winter coat.
But I am not what I was before.
Now I can discern the difference between an image that communicates and one that manipulates.
Mostly I see India moving towards the second of the options.
So I feel expansive in new ways. I will not beat my flesh back into size zero submission. It has to be enough just to radiate health. Which in my case, is as hard won and precarious as any Bollywood starlet’s latest role.
At the store opening, I will be interviewed by Barkha Dutt. The ‘First Lady’ of Indian television journalism. I find myself tugging self-consciously at my First Lady hair. One of the PR girls expresses concern over the impending interview.
‘She makes people cry. She makes them reveal things they never have before’
Another yellow warrior.
Bring it on.
Tug, tug.
Afterwards, someone brings me the India Today. On the cover is an image from my blog. I’m thrilled- and puzzled. This is a surprise. I’ve always wanted to be featured on this cover but somehow the Indian version of Time neglected to let me know. Kinda like your friends organising your Birthday party, in your neighbour’s house. You hear the commotion next door and wonder why you weren’t invited- and isn’t it weird no one’s shown up to wish you on your big day?
Infuriatingly endearing.
And thanks.
Because mostly it strikes me:
This is an image that doesn’t manipulate. At least I hope not.
Thank you India Today for urging people to see and feel.
Illness is alchemy.
Posted in The Yellow Diaries | 224 Comments »
Back to the business of blogging
It’s been a while. Of moving from highlight to highlight. And then not writing about it. Cause the heart is not simply suspended in a body. It’s also linked to time and place. So there’s a heavy in my chest, after all these months of membership in the Cancer Club. And if there’s a way to separate it all, I haven’t figured that one out.
‘Take a break.’
That’s Doc Galal. First appointment after the stem cell transplant.
‘I mean now take a break from the disease. No thinking about cancer, no writing about cancer, no talking about it either.’
Sure thing Doc. Except…
Minutes ago, in the waiting room, a row of faces swivelled towards me as I sat down.
‘Are you Lisa?’ Pleasant expressions up and down the line.
‘Ah, yes.’ Flash of pride.
A pause. Barometer changes. Brows lower.
‘Update your blog.’
Buh.
I’m pulling myself from the wreckage of my body. Operation stem cell reboot is a morphine-memory. My blood counts climb, I no longer count an IV pole as my closest companion, my father is relieved of his cot duty and I’ve banked all six seasons of Curb Your Enthusiasm.
No offense Larry, but I’d rather not see you for a while.
So why the anxiety now?
I’m touching shadow instead of bright. Having less real problems and more imaginary ones.
The crisis is over but the healing has just begun.
And dammit if there isn’t a protocol for how to witness your own rebirth.
Amidst all the mixed signals, Jess points me in the direction of some relief.
Go see Anne Davis. She’s gifted in the ways of the body.
Anne is a cranial sacral therapist. My mind is so busy these days, I have no space to admit the ‘what’. I’ve never tried this therapy before and I’d rather know nothing about it. I want to melt into the bed and leave the sentences at the door.
But wouldn’t you know it. Anne spreads me thinner than a shrimp roll wrapper and then she speaks..
This is your time to sit back and watch. The period of action and treatment is over. It’s like you have thrown a pebble into the lake, now you only need to set an intention and watch the ripples.
Cool. A hint.
I take this as a cue to leave Canada.
I hope I’m not running away. In my experience the act of physically extracting oneself from a confusing situation means you end up carrying all your baggage with you . And I don’t mean the checked in kind.
But this idea of simply being, getting out of my own way, is appealing. Certainly less action oriented than ‘picking up the pieces’. And while nobody offers a blueprint on what to do after checking out of the Cancer club, the idea is that you do something.
Anything?
Maybe I need a mission statement. I’ve taken to reading a lot of self-help, financial books in the vein of ‘Rich Dad, Poor Dad’. And it seems that to be wildly successful, you need to have some sort of plan. Which never occurred to me before.
So here goes…
I want to make visible what wasn’t before.
Or…
from a Borges poem which Sol sent:
I’ll try to make more mistakes- I won’t try to be so perfect.
Probably won’t find that in the Seven Habits of Highly Effective People.
Somewhere, somehow the pursuit of perfection has lodged itself in my very marrow. From making lists to vaulting over myself to achieve, these manifestations of a lack have seeped into the deepest, most secret part of myself.
A lack.
If I don’t try to be perfect, it will mean that I am.
All I’m trying to say is that I do not want the Cancer to come back.
Therefore something must change from before.
See- I have become more logical. Thanks Robert Kiyosaki.
I’m reminded of Michael Pinto the undertaker in Bombay.
‘Grave Problems Resurrected here’
That’s so not gonna happen.
Not on my resurrection.
That’s why I’m posting from Landour. Seven thousand five hundred feet above sea level.
Or according to the Lal Tibba Binocular Complex:
‘Highest peak of mussorie from where you can see an exhilarating all around view of the Himalayan ranges through the most powerful binoculars.’
I’m in India. Posting from a higher place.
To see what I didn’t see before.
Most exhilarating view.
So this new chapter opens with a message from Aarti calling for Rado…
Oops. Dinnertime here at Landour.
More tomorrow…
Posted in The Yellow Diaries | 231 Comments »
A quick yellow post-it
I’m out!
Looking for the first yellow signs of 2010
Stem Cell Transplant:
It was an odyssey. A trip to the core. The marrow had its way. Now I’m full of cheerful stem cells, like fields of sunflowers I travel inside and watch them turn their small, yellow faces towards me. They giggle and beam.
Go forth and multiply.
I am thankful to the care and attention I got at Henderson Hospital in Hamilton. I will write more.
Thankful to my father. Yellow thanks to Bobcat, Noni and Chris, Tina and Peter and Rose all super commuters. They came to infuse yellow into saline drip. Giggle, laugh, talk, read me out of my Diloted drowse. Shamim and Hanan for daily calls. Doc Raina for daily mantras, daily prayers and daily SMSs. Sindi for the inspiration. Namrata for keeping the sisterhood aflame. Deepa for words to float by.
Many Yellow souls unfolded before my bleary eyes.
And thank you Yellow Diarists. Know that your love and support hit the mark.
Time for a nap.
Napattack!
That’s just how it’s gonna be for a while.
Posted in The Yellow Diaries | 374 Comments »
To all Fellow Yellow Diarists, Enlightened Friends and Supporters
There has been such a constant outpouring of love and generosity since I began the Yellow Diaries. As I prepare for the final leg of my treatment for Multiple Myeloma, a lot of you have asked how you can continue to support this journey.
First know that I am grateful for all your open hearted responses already.
Second: please do not illegally download the films into which Shamim, Hanan, Sheetal and I have poured our creative energies. Purchase The World Unseen and I Can’t Think Straight from the Enlightenment website and you will be supporting not just the films we created, but future film projects made with passion and integrity. Without this support, there will be no more. In addition, we the artists collectively cannot sustain ourselves financially if you are watching the fruit of our labour for free. Think about it- its difficult enough to remain true to your vision and passion. Working with Shamim and Hanan has been deeply inspiring and I would like to work with them again and again. I would like to continue to make my living as a actor committed to working on projects which illuminate and provoke. This can only happen if you express your support by buying the films.
Happy Holidays and a Yellow Wish for all-
Love,
Lisa
Posted in 1 | 744 Comments »
Keep your chin up. Like a nosebleed.
I got that off facebook.
Ha.
Light precipitation tonight. All over my pillow. Every morning I wake to tickle from disengaged follicles. My hair is falling, my hair is falling! Evidence. Finally! The little piles make me think of the pleasant tangles washed up on the beach of Georgian Bay. Each length has a story, not necessary to know. But necessary to note. This reverse sowing that’s taking place on my head.
I am so relieved.
Suppose your hair doesn’t fall out.
This from Bobcat while shaving my head. He was concentrating on the back of my scalp. Two long Hassidic like sideburns framed my otherwise exposed face. An oversight or it just amused Bobcat to suggest eastern european origins. Wrong gender, but what the hey.
Whaddya mean suppose my hair doesn’t fall out?
I began to tug at the wispy sideburns.
I mean it would be funny if after you get buzzed, you don’t lose your hair. Ha!
Larry David eye narrow.
But EVERYONE told me they lost their hair. Sindi had thick, beautiful Indian hair. She thought it would last. Then it fell out in clumps in the shower one day.
I paused, captivated by the drama of it. An extreme Rapunzel moment.
You know Bobcat, every Cancer rookie believes they are different. The Cyclophosphamide or Melphalan is not gonna make ME pukey or constipated or infertile….
I’m special.
Well as it turns out, the Great Cancer archipelago is populated only by special people.
Who are there by special invitation.
Most of my words were drowned out by Bobcat’s buzzer. Even in my own head.
That’s why I’m happy I’m losing my hair. It’s a trap, but I’m entitled to this happiness. This increment of everything. So I enjoy the increasing spread across my head. There is a lot to be said for the impact of a shiny scalp. And never again will it be so acceptable for someone to find your hair in their food.
mazeltov
From the wispy wizardress.
So Operation Reboot Chemo began on November 23rd. The first step in mobilising those stem cells. Three days after that first hit, Neupogen or G-CSF injections began. G-CSF stands for ‘granulocyte-colony stimulating factor hormone’ and ‘I’m ready for my Master’s degree’. So the neupogen stimulates your bone marrow and increases the number of circulating stem cells. Chemo kills, neupogen grows, so you could say there’s an accelerated overthrow of the marrow status quo. A White Revolution without the KKK or the Shah. Then after a few days, you report to the Stem Cell Collection Unit. Blood is drawn and the results of the blood work, especially a test called CD34 decide whether you get hooked up to a cell separator device, known as an apheresis machine.
You can salute now.
It’s metallic transcendence.
Dials turn in steady sounds on the COBE Spectra Machine. I don’t know how to pronounce apheresis. But something close to sacred is taking place.
Or at least, they don’t let the sacred be taken away.
For a better description of the process http://goodbloodbadblood.wordpress.com/
Me, I don’t have the knack of objective reportage.
So I will digress.
I got my first neupogen injection at PMH on November 26th. After that a homecare nurse came every morning to affix sharp point to syringe. I insisted on two separate injections as one continuous plunge felt like a fountain on fat wings.
Talk to me. Distract me!
Dad blinked from the computer where he was researching MM. My father has walked all the earth and back in pursuit of a cure without leaving home.
Moved by the quiver in my eyes, the nurse started talking. She told me about a trendy clothes store I have never heard of and cannot pronounce. She spun a story about bargains and made in Bangladesh wares which made me forget the neat ways of her hands. And when it was over we threw the used syringes into a glass bottle.
I have medical waste!
Neupogen can cause bone ache. Or let’s say bone sensation.
Finally. A message from the marrow. Let it tilt back its maw and speak like a gloomy pelican.
Oh boy.
I didn’t know what I was in for.
Black merchandise.
Yellow bone.
Who has seen your bones?
Neither you nor I
But when you bow your head in pain
The marrow passes by
And Christmas is close. I have a list. It’s simple.
I wish everyone Critical Illness Insurance.
And for myself, a zygote.
Children: gather round and heed my advice. Ensure you have Critical Illness insurance. Most critical illnesses including Cancer are covered under these policies. If you are diagnosed, you should receive a tax-free lump sum payment designed to alleviate the financial strain and deal with non-medical expenses. Let me tell you- you don’t think about it when you’re a young raver and everything circulates around your pretty axis. You don’t want to think about it later when gravity takes charge. I hope you never have to cash in, but…
Think. About. It.
Or don’t think about it. Just get some.
I owe my first born to the Actra Fraternal Benefit Society. It’s my actor’s union insurance program. They are providing me with some weekly income benefits and helping to cover the cost of medication. That’s one thing they don’t tell you when you join the Cancer Club. Membership is honking expensive. If AFBS didn’t help cover the cost of my treatment, along with the Trillium Drug Program, I’d be donating my internal organs for a profit. All of them.
Hey that reminds me. I still have a ziplock bag of my hair.
Yellow Fever
This gives me Yellow Fever:
Dear Lisa R Ray:
Thank you for your recent application for Line of credit Critical Illness and Life Insurance
Unfortunately, we are unable to offer you the Line of Credit Critical Illness and Life Insurance coverage based on your history of cancer.
Buh.
Double buh.
How dare you brand me not by the perfumed magnitude that I carry within, but by this hard footed detour where my body takes me for the moment. Are you punishing me, are you marginalising me for a condition which arrived from some outstation we cannot pinpoint or know?
Do we need to stand off for a fistful of dust?
I want to speak and be overheard. And stretch wide because there’s space enough.
Makes me want to lower my bald head and charge.
Can you say ‘advocacy’? Will you sell light on the road with me?
I went to Wellspring, a non profit organisation which offers a wide range of cancer support programs. I went for advice on government financial assistance, cause, you know, I’m unemployed. And I’m gonna remain unemployed for a while. By the end of my meeting, Eileen had a sticky smile and had to rub her forehead a lot.
As a self-employed freelancer, I have no access to UI or unemployment insurance. Canadian parliament just passed a bill entitling us non-conventional workers to the same, but let’s see what happens. As for CPP or the Canadian Pension Plan, you have to contribute 4 years out of the last 6 to qualify for disability.
So, if you’re in Canada, make sure you contribute to CPP. Even if you are a self-employed shmuck like I was.
Except I contributed three out of six.
Um. You need a financial advisor. Eileen rubs her head one last time.
For the dead there’s land enough.
That Neruda. You can cross reference his every line.
So this Christmas, give yourself the gift of a little extra insurance.
And pomegranates. High in antioxidants. Dad wordlessly hands me a bowl every evening.
As for the zygote, I have not yet frozen my eggs. But I must. This morning I mobilised myself to a fertility clinic. I may need to delay my stem cell transplant to realise the hope for life in this life. A four celled zygote. We won’t call it Neville though.
That’s the name of our hairy baby. Bobcat and mine. More on that later.
Bobcat is back. I am at peace. This separation was not long. But it was too long. Yellow sobs and heart flutter became a cross country Bobcat ball breaking affair. We are entangled, we share a yellow soul. So bobcat out of the 416 is a wasteland arrived. He’s the source and without him the Yellow hive goes silent. It stop with a shudder, all my insides.
I have not been like this before. Besides shape shifting my body, the cancer has shifted my psyche.
It will be ok.
La la la la la.
He runs his hand over my shiny head.
Where else have you lost hair? Hmmmm?
LAUGHSHOCK: the recurrent shock of laughter in life. Or life in laughter.
Bad Bobcat. You so bad.
Another Shuvo-ism: we recycle every single molecule in our bodies on average every 7 years, you are just doing an assisted clean up of your immune system a little ahead of schedule!
Keep me posted as you prep for your coming ctrl-apple-reset
December 21st, the solstice is called Borodin in Bengali, my father’s native language.
Borodin means
Big Day.
Posted in The Yellow Diaries | 277 Comments »
I’m back
I never left but I’ve been busy. Committing my flesh one place while my mind goes somewhere else.
Like yesterday. Critiquing another hospital drop ceiling, while a radioactive marker circulates in my blood. Par example. Why are ceilings not more user friendly? Or counting to three and going to that tranquil pasture in my head while a Quinton Line is yanked out of chest.
No wonder I’m feeling fractured.
I am not feeling whole.
So I’ve been forging a smile. Then I show up. Friends help me cross thresholds and while we laugh and my mind is otherwise engaged, my body can quietly blubber away. I sit on the floor of Ted and Tara’s kitchen and hug Flora. Contact with a small, vital body is the antidote. My body unshrivels. Arm move without fear of IV reflux. Fuck the self-pity. Mental smack upside the face. We do what we are meant to do.
What we need to do is play.
Playtime!
Everyday has been playtime. More or less.
And we all know that playtime ends with fist shakes and tears.
That just about sums up my last two weeks.
Oh yeah- and I still have hair.
It’s growing, dammit.
But you wanna hear about the stem cell collection, right?
First, there’s a laminated painting in the stem cell collection suite in PMH, right next to the washroom when you first walk in. It caught my eye cause I have a thing for lamination. Under the painting, words. My next favourite thing is a laminated parable:
Ellen’s Lawn
An Analogy for an Autologous Stem Cell Transplant
During my stem cell reinfusion, a casual observer had asked for a description of the process. Dr Franke’s response, directed at me was, ‘You are a lawn’
My lawn had weeds, so weed killer (chemotherapy) was applied. The results of the weed killer were not seen for a number of days but the weeds slowly started to wither and finally died. Because the weed killer was so strong it also wiped out some of my lawn (bone marrow) as well! Then the rains (saline IV) came and washed all the weed killer away.
‘Today I’m planting your new seeds which will take time to germinate. In about a week we’ll add fertilizer which will help your newly germinated seeds grow.”
My ‘seeds’ responded to the fertilizer (Neupogen) and pushed through the soil into the sunlight. With the light from the sun (nurturing) and all the special care, the new lawn became lush and healthy.
buh.
So like, I’m grass.
Yeah, I’m grass.
That’s why I’m feeling trampled.
Day one of harvesting is like any other. I know I’m gonna be hit with an ‘intermediate’ dose of chemo so I show up prepared: with Bobcat and a scrabble board. I am slightly alarmed that today, I get a bed. It feels considerate and ominous at the same time. Yellow quakes.
I haven’t met a PMH nurse yet that doesn’t braise my brisket. They are uniformly engaging and compassionate. In an un-uniform way.
So my nurse explains how the next four hours are going to go.
I am accessed. Port drip. Tube and plastic slide.
And GO
We begin a rabid game of scrabble. If scrabble were a contact sport, this would be the bloodiest rugby game on record. Played in the Collesium. With spikes.
It's a scrabble-off
Bobcat’s eyes go all scottish loch on me- opaque enough to hide a beast.
We yell. We challenge. I scoff. He snorts. I tug my IV line. A little.
I even forget the liquid siege will burn through me for a while.
I throw down a ‘fez’. He tries to convince that ‘pos’ is a word. Nurse mediates. I want a scrabble dictionary for Christmas.
And then, ‘hitched’ takes my lead.
Bobcat win.
Dad enters. As we collect the pieces of words, Bobcat grips me with his eyes.
Remember how you felt. I want you to feel angry. And charged. Fight the bitse.
And he left.
Dad and I watched saline drip changed for chemo. Not the Velcade I’d been on for four cycles which was an antipasti pump into vein, but a primi secondi chemo. Acid drip for one hour. And at the end: nausea, fatigue, hair loss and other assorted dolci.
I even get pink ice. Apparently this counteracts the sudden sinus congestion and headgroan when the poison hits your bloodstream. You know, brain freeze fixes just about anything.
Obama want a popsicle?
THE solution to all your ills
From what I gathered, this first blitz of chemo helps to mobilize blood stem cells.
Stem cells, of course, are thought to be the origin of all blood cells. They live in bone marrow and are capable of producing red and white blood cells as well as platelets.
They are the thespians of your organism. Eager to morph into something else.
And three days after chemo, Neupogen shots begin.
And then you begin to mobilize.
A very worthy endeavour I’m told.
But before that, my saintly father took me home.
Saint Salil, my dad
I fell into bed. There I remained. For the next two days.
Later that week, Bobcat had to leave Toronto on work. Before, I had strength not to notice his absence. Now my sight costs me. I’m not sure if we can make it. I hope. But I’m not sure.
Everything is wounding me on this vigil.
If I had to describe a stem cell collection, I’d say it’s like watching a jet refuel.
There’s something significant going on. You can feel it. It’s awe-inspiring and essential. For what will come next.
Full flight.
But truthfully, there’s nothing to see.
It’s downright mundane.
Except, you know, I got the whole spectrum lighting experience. Even threw in a dawn simulator along with a hearty dose of Seasonal Affective Disorder (SAD). So I have tales of Quinton lines, and other assorted drama to share.
And unpeel.
It’s damn cold today. I”m not into Toronto just now.
As my log burns low, a Yellow Delivery. News from Andrew Winters, the transplant coordinator.
My Stem Cell Transplant is scheduled for December 21st!!! In Hamilton.
Grace.
And Grit.
A book recommended by Moira, Grace and Grit. I started working with Moira on healing beyond the body.
Tomorrow a playtime with words. I will be reading at the Small Press of Toronto (SPoT) Winter Fair at the Gladstone Hotel. I am not sure what to do. Many other experienced wordsmiths will be reading too. I will watch them. Then I will breathe in a way which hopefully doesn’t make me light-headed. Like during my Pulmonary Function Test last week. Which I think I failed.
I am frightened in a way which makes me forget the Cancer.
I am frightened in a way which makes me feel alive.
And I will remember:
Exactitude is not truth.
Thanks Matisse.
You’ve given me some copy to live by.
And on December 13th, a kirtan for Carrie Lundy’s mom Audree. Audree was diagnosed with advanced colon cancer last year. Recently her doctors sent her home. Audree and her daughter Carrie are fighting off feelings of defeat in Winnipeg. My Moksha yoga sangha will be doing a traditional call and response chant for Audree Saturday evening. Sometimes the best response is to sing.
We’re singing with you Audree.
News from Shamim and Hanan. Enlightenment Productions has raised an additional $5000 online for the David and Molly Bloom Multiple Myeloma Research Chair at PMH.
Whoop whoop.
Posted in The Yellow Diaries | 289 Comments »
Evening before my stem cell harvest, I open ‘The Winter Vault’
‘No two facts are too far apart to be put together’ Anne Michaels writes.
Witness then, my exaltation.
And my fear.
Side by side on a bench. Thighs touching.
My enthusiasm and my exhaustion. Cuffed to each other like greasy inmates. Origins long forgotten.
Me and Bobcat-man.
I have to start where I am.
One paw in front of the other.
I had this dream where you told me you wanted to be a lion tamer, Rachael wrote recently. Please unconfirm asap.
Can’t do that Rach. My experience of living is shifting so quickly I need props. Got me a whip and chair. Metaphorically. Got me an MM beast to dance with and tickle-tame.
It’s been a month since the MM5Kwalk. Every time I sat down to write, I slipped. My seat was slippery. My fingers could not curl. Living differently already, my mind struggled to register what my body knew.
So some pulpy experiences. A trip to Connecticut to attend the MMRF Gala aborted two hours away from my destination. I stopped driving in a small town in upstate NY. It had been raining dramatically the entire day. A meal at Dan’s Fish Fry and I fell alseep watching My Super Sweet Sixteen on MTV with images of squealing teenagers in my head. Hmmm. I woke the next morning with deep bone ache, fever and gummy eyes. So I drove back to Toronto only stopping once at the border to buy a Mongolian Warrior Vest. At a deep discount.
Cancer sprees should be tax-free.
Instead of disappointment, another barrier melts. I had just finished chemo a few days before. And I tried to get to the gala, in the way I knew best. So I grew my heart, and shrank my judgement. My intimacy with myself expands. The split in myself slowly seals. Yellow caulking.
Yellow reminds me of turmeric. A healing yellow. Now that chemo fog has lifted I’ve been trying to eat well and incorporate ayurvedic principles back into my lifestyle.
A pause in treatment. From end of chemo to now a different sort of Flush;
A visit from Shamim and Hanan. A Full Remission. A Remission Rock from Bobcat. A NADA fashion show. Another eye infection as payment. A visit with my eggs. A dream of zygotes. A Cancer Documentary. A reclamation of my body. An interview with Anne Michaels. A revival of my brain. Of my traits. Shingles. Oil of oregano and travel to new old world Buenos Aires to prepare metaphysically for the next chapter of treatment, thanks to Dr. Galal’s support. Sol Vichez and Ambassador Viswanathan. Eenam and ‘rosy salmon to the grill’. Che boluda!
And on Wednesday, the inauguration of the David and Molly Bloom research Chair for MM at PMH. One month to the day of the MM5KWalk. I put on my Mongolian Vest and gathered with fellow lion tamers. Shane-Saunderson-in-a-suit (http://prairiepedal.blogspot.com/) tried to slip away when he was lauded by David Bloom. Me, I LOVE people who avoid attention. I can relate.
Which is why I became an actress, of course.
The mood was buoyant Yellow. I recall purple bloom of jacaranda trees in Buenos Aires. Something stirred and lifted. In the seventh floor atrium, padded by optimism and the shine in Dr Reece’s eyes, I feel: hope has a scent. It’s the smell of the rogue cells as they are washed away.
You can only smell it now its washed way.
And I thought of Frida Kahlo. The ultimate lion tamer.
Molly Bloom thoughtfully gifts Dr Donna Reece, a gorgeous painting which suspiciously resembles mine and Bobcat's potential zygote
Gracias to everyone throwing themselves against this new frontier. This research chair at Princess Margaret is buying us MM club members time. Until the cure. I’m a porteno, a traveller arrived, and I’m not protecting myself from the frontier mentality.
So a triumph on Wednesday November 18th.
I feel like Nadama’s favourite plant, I cannot make flowers yet.
But I can make leaves. A lot of fleshy leaves which grow and grow.
Charlie Bravo: cumulonimbus clouds on the horizon.
Stem celling. A waving field of yellow cells to harvest.
Undifferentiated of course.
My stem cell procedure begins on Monday. Tomorrow. So I donned a disciple’s robe and surrendered my hair. Bobcat buzzed my head on Friday. The harvesting of my cells starts with an intermediate dose of chemo. And hair loss. If not immediately, then it’s bound to happen one day in the shower. So, thanks to Bobcat and his professional clippers, no more barriers to suffer. I can transcend now. A reinvention. A purification. And a transformation. From the inside out.
woo.
I’m a little scared.
This Cancer membership comes with some heavy terms and conditions.
I did an uplifting workshop at PMH called ‘Look Good, Feel Better’ (www.lookgoodfeelbetter.ca). It’s a free 2 hour cosmetic and hair workshop for women with cancer. I love the idea of incorporating ritual into this stem cell purfication every morning. Of drawing liner over my eyes and dabbing outrageous gloss in the middle of my bottom lip. And I will meditate on my breath every morning. To live well and with precision.
Mongolian fur feels gooood on hairless brown scalp
No wigs though.
I got up and danced after Bobcat shaved me. I like the feeling of movement on my scalp. I’m transformed by sensation.
Ya know what I mean…
Like the H1N1 shot. The sweet throb that goes on and on…
And no more volumising shampoo. I’m gonna save a ton of cash.
Might help with the the drug bills. I may have to be on medication for the rest of my life. This calls for a poll- with fellow MM club members, not just oncologists. There are options that only another patient can illuminate. Straight up.
Imagine all the cash I'm gonna save: John Freida eat your heart out
Tango style 34 in champagne blush a tad too flirty pour moi, perhaps?
I want to caulk the gap between us. Yellow caulking. Keep you close during my practise. Practise of a new way of life.
‘Certainly travel is more than the seeing of sights. It is a change that goes on, deep and permanent, in the ideas of living.’
Mind the gap.
I’ll be closing on it fast.
Thanks for your patience fellow Yellow diarists. From here on in it’s wordspill. Even on my tumblestack days.
National Stem Cell Awareness week just ended on the 21st. Get in touch with onematch.ca to find out how to help one of the hundreds of patients in Canada desperately looking for a donor match.
And beso to Elrica Saw for her gift. She sent me ‘Anti cancer: A NEW WAY OF LIFE’ by David Servan-Schreiber.
Sure David. You and I and Henry Miller concur.
‘One’s destination is never a place but rather a new way of looking at things’.
And thanks Shuvo for the hint: if you read or hear or watch things that make you laugh while getting G-CSF prior to harvest, your CD34 count ought to rise faster. T-cell levels correlate with that amused feeling!
Thanks to Myeloma Canada for coordinating and motivating the MM5KWalk. A Yellow Bond.
Team Myeloma, raised over $23,000 for the Bloom Chair, and the Yellow gauge still rises. I want you to know you are part of the Lion Tamer’s circle of Yellow. There’s a direct link from your generosity to Multiple Myeloma Club Members. Thanks David and Molly for the possibility.
As David puts it: keeping us alive, from bench to bedside.
In the meantime.
Joytear.
Posted in The Yellow Diaries | 651 Comments »
Lisa Ray 