Make MM Matter: Scrapbook of a Cancer Graduate

Indian Vogue-ing with my chemo cut

Bonus! Fabric flies, but my chemo cut stays put

One year anniversary of my coming out at TIFF- Thanks to the Globe and Mail for putting the story of a Cancer Graduate front page and center

Back in the Business of creating illusions: hair is borrowed as is the dress

NY shoot for Rado Watches- sneak peek and thanks for the support

I wish me a long remission…

And now for a public service announcement:

Let’s make Myeloma Matter…

And a cancer carol…

I wish you a long re-mission, I wish you a long re-mission…

I wish ME a long re-mission

And a Happy, New Life.

I got trained in ‘key messaging’ before filming a PSA for Myeloma Canada on Thursday. As in: what do I want people to hear?

Or as Kissinger put it:

Do you have any questions for my answers?

Why am I here?

To Make Myeloma Matter…

Why?

Because I have to remember…its not over yet. Because autumn frost follows the abundance of summer. Because the Jacaranda flowers unblossom and carpet the ground before I can commit them to memory.

Because everything changes. From worse to better. Better to…

Relapse?

While I worked to find the right tone for the 30 second spot, the Benny Hill theme ran through my head: Yakety Sax. Sandra, my makeup girl had played me a youtube snippet with the insidious tune in the green room and the damn music got lodged in my cranium.

Yakety Sax. Look it up.

Incongruous? Maybe. But not entirely inappropriate for the message I was trying to deliver.

Make Myeloma Matter. Quickly please!

John, one of the co-founders of Myeloma Canada, sat behind the monitor. Occassionally he leaned over to the director to offer an opinion on one of the takes. I didn’t speak to him until we took a break and he walked up to me to share his story.

I want you to know I’m a 12 year survivor.

And after I was first diagnosed, there weren’t many of us around.

He meant survivors. Of 10 years or more.

Whoa.

I feel so good now, it’s like it never happened. But that doesn’t mean it never happened.

I have to remember. Because right now, I simply feel like it never happened. I’ve been back to the business of living. Schedules and opportunities. Fielding phone calls and making plans. Stepping out, wearing snugly cut clothes. Posing for the camera…again.

Finding love…

Falling in love…

Yes, I have fallen in love with a man who understands. And who inspires me to be better and to make it all matter…

And he’s the list.

More on the ‘Raja’ later.

Not two months ago, I bought a home in Nelson and planned my retirement.

Now here’s what I’ve been up to

At the beginning of September I flew out to Mumbai to inaugurate the Fortis Cancer Institute, a one stop, comprehensive care facility. Cultural observers will be happy to note that the C- word unanimously inspires dread across the world.

Malvinder and Shivinder Singh, the driving forces behind the Fortis Group of Hospitals are inspired to overhaul the approach towards Cancer Care in India.

Oh yeah.

We also announced the Lisa Ray Fortis, Spirit of Life Award for Cancer Conquerors

Hopefully much more on that later…

I’m pleased to report the fashion commentary on my appearance at this event was mostly positive. Except for my shoes it seems my outfit passed muster.

Incongruous…yes

Making Myeloma sexy? Trying…

Celebrating my ‘graduation’

My Raja, the man who cradles my heart with tenderness and an undeniable sense of belonging, introduced me to this idea…

We are graduates, he tells me. Graduates of the Cancer programme…

And yes. He’s a graduate too.

While I was in India I shot for Elle Magazine with my friend Farrokh, iconic Indian photographer, who has never met a dwarf he doesn’t like and who has a passion for aviation, though he doesn’t like to leave the ground. Farrokh and I have known each other for twenty plus years, and when I was in India weeks after my stem cell, he inadvertently became my primary care giver and wrangler. One day he escorted me from Jaslok hospital, bandaged and step-tripping after an operation to excise the nasty crop of cysts on my eyelids known as chalazion which were another fallout from chemo and soon afterwards, he took pictures. Restored to sight, and he recorded the moment. A gesture which was both compassionate and enpowering for me.

So its only fitting that the images he captured of me in early September will make the cover of the magazine. I am proud of the images. Are they about Cancer? No. They are about celebrating my graduation.

Thank you Nonita for lobbying to put images of an almost 40 year old graduate on the cover of a beauty magazine.

And…

I will be speaking at an Evening Celebrating Science for the McEwan Centre for Regenerative Medicine on September 23rd in Toronto.

Basically, taking stem cell talk out of the lab, onto the streets.

Taking the miracle, the promise out on the streets.

Why?

Without stem cell research, I would not be here.

And if you saw what I did, in the labs, through the microscope, you’d feel like using both hands to scoop those secrets out into the world

I’m just saying…

So I’m feeling fine. I’m drug free, out of choice and because there’s no conclusive compelling evidence to prove that remaining on ‘maintenance therapy’ will prolong my remission.

I’ll do that on my own.

Well, not entirely on my own.

With my Raja.

And you.

Anniversaries

I went away to Nelson BC.

There is something lyrical about heading west. Freedom-seeking. With or without a wagon containing all your worldly possessions.

I love the mountains for how they free me of excess. Words, for instance. The ones in my head and otherwise. In Nelson I stayed with my friends Rose and Michael who are urban refugees and run a B&B in an old convent. Rose calls her establishment ‘Simply B&B’. And that’s what we did. We cooked together. We soaked in the hot springs together. We ran errands together and draped ourselves on the sofa in front of the fire together.

I was simply ‘being’.

In Nelson, I saw a healer called Michael Smith. He spoke to me about many things I’d heard before. About what to eat. About what to avoid. About how to shift my nervous system out of the stress response and into the relaxation response. About ‘Larry the Lizard’. In fact, he called his brand of medicine, ‘And’ medicine because of all the approaches he throws in.

‘And’ I understood. Everything he spoke to me about.

Maybe because I had more room inside.

And I had time to grieve. For my mom. I lit candles at the Catholic church for her. And I cried.

Maybe because I had more room inside.

What I need now, is simplicity. Even in my writing. I don’t want to be clever and agonise over new ways of telling you about what I’m going through. There must be a direct current from my heart to the keyboard and I’ll keep trying to find it.

So…

A lot of anniversaries. Over a year since I was diagnosed. June 23rd, 2009.

Dr Galal has left PMH for Saskatoon. While it’s too arrogant to believe he was stationed at PMH to save me, just me, he was there for a critical period of my treatment and his departure makes me sad even as it neatly bookends one chapter of my experience with MM.

I had a check up with Dr Reece who is running the David Bloom Research Chair for Multiple Myeloma at Princess Margaret. She’s just lovely. Bloodwork shows I am still in remission, the beast remains in its cage. I am more at peace with monitoring myself for the rest of my life. It’s a new normal, as they say.

I have decided not to go on any maintenance therapy. Living drug- and specifically Dex- free is sweet. My quality of life is better than before. Now that I’m learning to ’simply be’.

Guilt-free.

Naturally, a lot of folks in Toronto think I’m nutty. Or lazy.

Why do we feel so compelled in North America to always be productive? And how do you measure the intangibles, but non-negotiables, of your quality of existence? Happiness? Self-actualization? What are the metrics involved? Can we move back to a place where we trust our own inner compass?

Well, yes. Yoga helps.

I went to my Moksha Yoga graduation one weekend ago at Jess’ farm. It was over a year ago, in Kerala during my Moksha Yoga Teacher Training, that I knew something was wrong.

And then it took me longer to stop denying my feeling.

Moksha Yoga has taught me the power of community. The value of approaching each task, no matter how small, with commitment and focus.

Buh. It’s been one of my toughest lessons. And I suspect I’m a slow learner.

I recently had lunch with the Queen and Prince Philip. I know- its just one of those events which are hard not to flog. The lunch for Her Majesty was held at Toronto Pinewood Studios in order to highlight our film industry. So it was an honour to MC the event. And sit at the head table, next to Prince Philip. Who says Multiple Myeloma doesn’t get you places? While I’ve suspended my Cancer Club membership, it seems there’s been more extracurricular perks than being a member of the Toronto Lawn and Tennis Club.

Prince Philip was engagingly irreverent, warm and ironic. By the time we started dessert, I had forgetten about the five pages of protocol I received before the event, culminating with ‘Subjects of Conversation: It is not appropriate to offer opinions on the Royal Family in discussion, complimentary or otherwise. Giving unsolicited opinions is not advisable.’

gulp.

When you’ve been through Cancer, protocol moves way down your priority list, in my experience. However, I’m Indian, so I welcome some amount of ritual and spectacle. And I do have an affinity for Royalty, having spent many anecdote-worthy evenings with a deposed Indian blue blood or two. So I enjoyed the circumstance and a bit of the pomp and acquitted myself reasonably at the luncheon.

You know why?

Because now for me, its all about chasing the joy. In any situation.

And it was the Queen, after all.

God bless the Queen.

Enough said.

I will be filming on Tuesday. A guest role and my first acting gig since…BC.

Before Cancer.

I got some images from Rado which I shot shortly after my stem cell. As one friend said, ‘Loving the short hair so much. Leaves more room for you to be there.’

Rado has been steadfast in supporting me through this new terrain.

And my friends. I am so grateful. But you know what else Cancer taught me? Love is an action. It’s not a feeling. And its not love until there’s evidence of action. So I’ve been very busy, loving my friends. Sometimes that means cooking basil pesto salmon, or staying on the phone an extra 15 minutes or it means travelling to Nelson.

Or it means practising compassion.

Both with another and with myself.

A friend of a friend was recently diagnosed with MM. I called her up and offered up my support. I coached her through the the upcoming stages of treatment. When I mentioned ’stem cell transplant’ she blurted out that she was terrified and couldn’t bear to think about it. Then I suggested she read this blog.

‘NO. I can’t. It will make it too real, too soon.’

After getting off the phone, I felt disdain. That’s right. Disdain. I felt this woman was weak and confused. I wanted her to be a trooper and take charge of her health with a zen-like attitude. Pull your head out of the sand, for chrissakes!

And then I remembered. One year ago. I was invited to attend a south asian festival in Toronto. And I agreed.

It wasn’t an act of bravery, but my own personal response to getting diagnosed. I was in denial.

So what’s the difference between myself and this newest member of the MM Club?

Well, she’s braver than I. Or, at least she is sharing what she feels. Completely and without self censorship.

That makes her braver than I.

I’m a slow learner, as I mentioned. But I get there. Deny nothing, good or not so good, and you have a chance to both heal and experience the fullest spectrum of living.

The MM5K Walk Toward the Cure to raise funds for Multiple Myeloma Research at Princess Margaret Hospital is coming up soon. Even if I’m not in Toronto, I hope we can all galvanise together. Like last year.

I’m also searching for a charity or foundation which specifically targets Multiple Myeloma in India. My friend Lisa Hayden in Bombay did some research and referred me to Dr Advani’s foundation. Dr Advani has been treating her mom for MM. And Lisa has been bringing my photo to Patrick the Healer. Sometimes this cancer thing has connected me with remarkable beings in the most unanticipated manner.

Curse or blessing.

Maybe I should just stop judging.

Oh yeah. I got another rejection from an insurance company for a new mortgage. Another year, another rejection.

buh.

I may be marked, but maybe it will make you listen. Despite my ‘pre-existing condition’.

In another few months, I will be promoting, 1 a minute, a docu drama featuring female celebrities around the world who have some experience with Cancer. I hope to be in India for the promotions and I hope to donate some of the proceeds to a Multiple Myeloma charitable foundation.

Work on my first book begins shortly. Before then I need a cautionary sign: ‘Woman at Work’, as much a reminder to myself as a warning to others. Of course, I have found the perfect collaborator for this project, someone who will both inspire and discipline me.

And…

If you really want to know how cancer has changed me, I offer this poem:

We shall not stop our exploring
And at the end of our exploring
we shall arrive where we started. and know the place for the first time.
Through the unknown, remember the gate
through the last of earth left to discover
is that which was the beginning
At the source of the largest river
the voice of the hidden waterfall
And the children in the apple tree-
not known because not looked for
but heard, half-heard in the stillness,
between two waves of the sea
Here now a condition of complete simplicity
costing not less than everything.

TS Eliot

Harakiri and hot flashes and RIP Dennis Hopper

My laptop commit harakiri

It was the most amazingly prosaic swan dive from the second floor. One moment the device was in my hands, then I heard the impact as it landed, squarely, one floor below.

A gap.

And then:

‘I guess it’s time to purge’

When the boy genius Apple employee looked grim, it only confirmed what I felt in my heart.

It’s time to break with the past.

My hard drive was damaged and apparently I had been backing up my data with a programme which is incompatible with the new operating system. So, all the photos, the yellow stickie musings, the poems I wrote and the quotations I collected…all gone.

Or as inaccessible as a banker’s heart.

Before, I would have hissed and spat.

Now, I just laughed. With relief.

The boy genius handed me a card for a data retrieval expert.

And it made me anxious.

What to retrieve and what to leave behind?

Some of the choices, now, post-cancer treatment, are being made for me. After returning from India, bobcat and I are more separated by our priorities than by distance. I cannot just resume my place at the table, pick up the cards and continue as before. My poker face has melted away. As well as my zest for the game. So I’m back in Toronto and assessing the collateral damage.

buh.

I am also struggling with chemo-induced menopause. That’s a significant part of the collateral damage which doesn’t hit you until it hits you.

Apparently, natural menopause is a fender bender, whereas chemo induced menopause is like hitting a brick wall at sixty miles an hour.

heart pop.

It’s unclear whether this is permanent or a temporary side effect. I’m taking note of all the symptoms. Like the hot flashes. Like the unfortunate changes in my personality. Which is kind of hard sometimes, as menopause affects concentration as well as my memory. Obviously, my data retrieval woes go on and on.

Small resentments find their way inside my skull. Its an orchestra, each thought loud and distinct and also harmonising together into a soundtrack. A melodramatic one.

As in:

‘How do I catch up? I’ve lost eight months of my life.’

‘Who will take care of me if I relapse?’

‘What do I do now?’

‘Why didn’t I freeze my eggs?’

Because now I long to have a baby. The desire I never experienced before. To evoke the ancestors and wash my fruit in the stream.

Like the ‘hundredth monkey’, I am a victim of collective consciousness. I am not as unique as I imagined.

Because now I want to have a baby.

Before when I was going from treatment to treatment I had little time to reflect on what I was going through.

Now I am becoming interested and curious and tender. Again.

And sometimes sad.

But at least I have an excuse to act up. Again.

The menopausal rage takes me by surprise sometimes. Maybe its a good thing bobcat’s not coming round often. Or at least he no longer parks recklessly when he comes to visit.

Unlike before.

But that was before.

Bobcat once said: ‘perhaps the reason I came into your life was to walk with you through this.’ I was diagnosed almost a year ago because he prompted me to get extensive tests. Not just that, he paid for them. Perhaps every relationship has a purpose we cannot discern from the beginning.

I prefer to believe sometimes two people come together simply because they open each other’s hearts.

Can cancer teach me something about the nature of love?

So my girlfriends are gathering close. Only they can discern the crazy wisdom changes.

And before I spill all my colours, I remember the words I have not spoken.

‘I was dying. I am still here. The journey is the now.’

I need to take care of my body. I have been seeing an acupuncturist, Zhao Cheng, who is the director of the TCM (traditional chinese medicine) Anti-Cancer Centre. He smiles a lot to make up for his english. He is gentle and considerate. He takes my pulse every week and places the needles precisely into my flesh. The ones stuck over my hip bones hurt. They are stimulating my chi where I need it. In my ovaries. In my bone.

He hands me a package of chinese herbs after every visit. I snip open the plastic squares and mix the contents with hot water. It makes an extremely bitter tonic, which makes me feel like it must be working.

Then I went to see Lisa Doran, a naturopath recommended by my friend Tara. She took notes as I spoke and recommended some herbs as well as the 21 day Feel Good Spring Fast by the Feel Good Guru (http://feelgoodguru.com/) It’s a vegan cleanse which means no dairy, no meat, no wheat and no sugar.

I know what you’re thinking.

Why put yourself through that? After everything you’ve been through.

What I’m doing is tasting full service food. It’s delicious but even more than this is the way my body feels and functions. Undiluted energy runs through me.

I’m purging all those pepperettes. From my initiation into the Cancer Club.

Yes, we’re vegan now, sighs my father.

It’s worth a shot. This fresh possibility of good health.

Cancer is not the end of the road.

It’s a cryptic restart.

I spend a lot of time enjoying the company of friends now. And I’ve got the shrinks! The curves of my collarbones are back. My body looks pleasing to me again. I can’t take it with me to the next life, this bag of bones, but I can take care of it in this life.

And my bones. I listen to the deepest part of me.

That’s why I can’t just go back to my old life.

I found a new predisposition. It flares up so strong these days, I have to obey. I will write. A book. Soon.

And my dear friend Sindi Hawkins is battling leukemia for the third time. I’d like to glue myself to her bedside and expect the miraculous.

Here’s the cover of the Indian version of People Magazine. Thanks to Sandipan for a sensitive interview and for spreading hope for members of the cancer club in India.

And a message from Shamim and myself:

‘Thank you so much to everyone who has contributed this far to making the audio books of The World Unseen and I Can’t Think Straight happen. This is a project funded by all our wonderful fans. Shamim Sarif, author of the books and director of the movies, flew down to Mumbai two months ago, and I read both books during a week’s intensive taping.

There’s still a chunk of the budget that needs to be raised, to enable the production of the Audio Books. If anyone wishes to donate to this fund, donations are being taken at Enlightenment Press’s PayPal account and the email for donations is info@enlightenment-productions.com.

In the meantime, the audio books are available for pre-order at the Enlightenment site, and the downloadable version will follow when ready.

Note to self: stem cell transplant. Time to tackle that chestnut. Next blog.

And here’s news:
We are pleased to report that Newsweek has featured the MMRF’s barrier-breaking work in its May 31st cover story, “Desperately Seeking Cures?“.

The article examines various roadblocks in developing transformative, life-saving treatments and focuses particularly on the “valley of death,” the infamous period spanning pre-clinical drug discovery to early-stage drug development where new compounds often stall or languish from insufficient funding. The MMRF is cited as a model in overcoming these roadblocks from our focus on collaborative science and data-sharing to our commitment to supporting a strategic and aggressive research portfolio to ensure that the development of more effective treatments is not stalled for funding, expertise, or resources.

Thank you for your support. With your continued generosity, we will ensure that the next generation of treatments is brought to patients as quickly as possible.

Best regards,

Kathy Giusti Signature 2010

Kathy Giusti
Founder and CEO
Multiple Myeloma Research Foundation

Battle Fatigue

Imagining by Farrokh Chothia

Battle Fatigue

I’m not sure about the symptoms. But I’m a girl with hunches.

Maybe I feel distressed because I’ve been lying in the lap of darkness. Leaving that place takes a lot of yellow. Maybe I’m muddled because I made a contract to save my life. Now, I’m surrounded by debris and questions: What next? Next, what?

Do you want to upgrade?

Arhaan, who is seven, and magnetic, plays Monopoly with me on a stone floor in Goa. Dice roll and he lands on Mayfair. Checks the stack of cards at his side. Grin spreads because he owns Mayfair, and he wants to buy a house.

He hands over a fistful of monopoly bills.

‘I want to UPGRADE’

pause as he places the small plastic house on his square.

‘And you are going DOWN!’

I can’t get these two lines out of my head.

Because…

maybe if I downgrade, I can’t go anywhere but UP.

This see-saw action of the universe is making me less polite. But a better person. Now that my hemoglobin is rising, now that my time to curl is over, I only want to find a place where there once were many people and now there are none.

Like Bassein Fort.

I want to be solitary. And I want to tell you things.

About Divya’s swan dream and Denzil’s 40 watt bulbs, about Tip Top Tea Shop and Barry the St Bernard. About the Glasshouse outside Rishikesh. About National Integration Tissues and singing the lumberjack song in Bulsar. About Patrick the Healer and Tishani walking to the End of the World. About how I am simulating my life when I am not living the only way I know how…

With no fixed return.

Since I got back from India last month, I’ve been feeling oppressed and fearful. I can call it Battle Fatigue.

Or choose not to name it.

Whatever it is, I can’t manage or encode my feelings anymore.

I need some EPO. Emotion Processing Outsourcing. My own personal call centre.

In an old bookcase in Goa, I came across this passage:

‘I began to see how my fascination with the drama of my emotional life and my too great faith in the powers of my intellect had withered my spirit. You have become imprisoned in the knowledge you acquired. Now you must let it go for another knowledge to come in.’

All right then.

What does that have to do with the fact that I’m cancer free?

well…

Yesterday I cleaned out my medicine cabinet. I threw out the apo-metronidazole, the apo-granisetron, the ran-pantoprazole and the ativan and tried not to linger on the labels.

‘Take 1 tablet 1 hour prior to chemotherapy’

‘Take one tablet every six hours when needed’

‘Take 1 tablet three times daily until finished’

Buh.

None of the containers are empty.

You might call me irresponsible or inconsistent. Someone singularly unsuitable to use a spreadsheet.

I prefer to think of myself as having a glorious uncertainty when it comes to uniformity.

Either way, I loved tossing them.

Making space.

Cleaning out my cabinets.

My port remains though. I thought about taking it out when I got back from India.

But there will be blood tests. Regularly. To check.

And bobcat is battle scarred. He needs a break.

From me.

There’s so much to share.

And in this tornadic swirl of compelling experiences there is a centre.

And the centre is yellow.