Month: May, 2010

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.