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Migrating…

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’

http://blog.lisaraniray.com

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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.

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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.

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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…

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Resolution 2010

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Yellow Signs 2010

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.

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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.

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