Wednesday, December 30, 2009

sasha





had a beautiful 24 hours with sasha.

so grateful that i have such a sensitive child in my life. getting to see the world through the eyes of a 16 year-old is rare and lovely.

suddenly, everything is pristine and sparkling as a fresh snow fall. things are faceted with possibilities.

sasha is not always easy, but she is kind, fragile and, as a teenager should, wears her emotions so close to the surface you can almost run your fingertips across them feel them trembling. sometimes, an immersion into her vulnerability leaves me so breathless and raw, i can barely speak.

at the moment, she is full of questions about her own strengths and talents, the painful process of learning to balance pleasure and self-discipline and of course, the anger an adolescent has towards her authority figures. (and there are lots of times when we deserve it.)

feeling so lucky i am able to listen to her, lucky that she is the person who ended up being my daughter.

so after 24 hours of being really stressed-out and worried about my kids, i convinced james to bring sasha home for a bit of a reconnection. she spent the night, went to see a friend, and then we hung out all afternoon until james came to pick her up for the evening.

now relieved and a bit sad because i miss her, too.

Tuesday, December 29, 2009

co-parenting in the time of cholera



trying to be consistent with another parent is hard enough when your life is normal and you're together, but when you're sick and immobile

and the other parent is an exhusband with a new partner and he privately thinks you are deranged and power-hungry,

it is almost impossible.

so while i'm in hospital getting chemo - dad "trusted" them when they texted to say that they were at friends' houses - and they, like any smart teenagers, stayed in our empty apartment and threw a party that got so out of control, the neighbors had to come downstairs and close it down.

i found because my neighbor kindly texted me in hospital to ask if it had been ok'ed.

dad was most angry - not because random drunk people were showing up at his unchaperoned teenaged daughters' door - but because they made him look stupid.

the following weekend, when i was back in chemo and they were grounded for their illicit party, there was a change in travel plans.

dad was stuck with the kids on saturday night when he had somewhere to go and so did his girlfriend.

so he decided, yet again, he "trusted" them and planned to leave them in HIS apartment alone, this time with the younger sister. fortunately, my brother went and picked them up and brought them home.

his response - he doesn't like "being a policeman."

thus homework is not often done, the girls wear inappropriate clothes and talk back (all like normal teenagers) - but there is no parent either physically able or willing to monitor them.

augh.

Monday, December 28, 2009

oh well

i had convinced myself that the cancer was absolutely gone and i didn't need any more chemo.

was suddenly imagining entire weeks where my energy levels just kept getting better. thinking i'd be swimming laps again.

i called the doctor's office this morning at 9 am and left a message with the secretary.

then again at 12:47. the secretary told me they weren't in yet.

so, like a stalker, i called again 2. the secretary told me they'd call as soon as they got the results.

so all day, i was cross and anxious and pacing the floor. i'd been arguing with my dad about why i didn't need a hysterectomy.

and i even broke down and put some parmesan on my gluten-free pasta with broccoli rabe (sweetly homemade by my worried friend zia). i ate a dark-chocolate-covered almond.

i was waiting to hear that my blood hormone levels, the ones that tell you how much cancer is left in my body would be zero. or at least around 5, which is normal.

just to give you idea, when i went into hospital on november 20, they were 189,000.

anyway, after my first round of chemo, they dropped to 48,620, on the next 12,573, then 2047.

so like 15 year-old girl waiting for a boy to call, i was irritable and in limbo.

i kept checking my cell phone, every five minutes, even took it into the bathroom when i was in the shower, so i could jump out and answer it, just in case.

though when she finally called back, i was on the phone with my mum telling her to stop being so negative because the cancer was almost gone and that i was no longer interested in discussing hysterectomies with her.

the phone message - delivered in an upbeat, irish voice - "your levels are going down very nicely! it's 137."

i should be overjoyed about that number, the doctors seems to feel it's miraculous. but i'm so sad. it's not over.

that means at the very least, two to four more weeks of chemo.

at my next doctor's appointment, i am going to see how i can bring this to an end sooner. not sure how many more toxic chemicals i can take...

Sunday, December 27, 2009

the day after

one day after chemo, two days after christmas. i've decided that all this cancer-craziness will be over by the first of february. maybe even sooner if i can work it.

from my last set of blood tests, more than 3 weeks ago, there was barely any sign of the hormones this rare uterine cancer produces. in fact, the chemo nurse was so overexcited he came rushing into the hospital room to wake me up and tell me.

the worst thing that can happen during holidays is getting sick.

a last-minute strep throat and your only choice is four-hours under fluorescent lights surrounded by moaning injuries at the emergency room, or hope for the minute clinic at the CVS - if it's still open.

all the serious doctors leave town. as they should, it's a grueling job, they need a vacation. but that means there is lots of room for being ignored. for stuff happening on automatic pilot. for nurses saying, "i can't do anything until i talk to the doctor." to a doctor. to any doctor...

the nurses who are left shuffling around the hospital continue like automatrons, simply following the printed list of instructions.

in 1995, i had a baby (zarina) one desolate weekend when my ob-gyn was out sick, her replacement called in off the golf course and his hands were shaking through the process of sewing up my episotomy (a procedure no longer deemed necessary). i ended up fainting in a pool of blood as the nurse nervously tried to cover herself because of course everyone else had jumped ship by sunday.

anyway, yesterday, i asked the nurse about my chemo and she had no real answers, partly because she didn't even know who i was, she was just filling in.

i complained about my usual aches and pains and she gave me some blood tests and my potassium levels were elevated but she couldn't do anything about it because there were no doctors around.

i got no real answers about what they were doing and when it was going to end.

here's what my doctor wants to do: keep giving me chemo even after the cancer is gone.

here's what i've learned: the more chemo you get, the higher your chance of future cancers, tumors and secondary infections.

so tomorrow i will call the doctor's office and see if i can get control of this - and a real date for when this is all over.

job 2: keeping my parents calm through the process. it IS hard watching your child suffer and be unwell. but when you're the child, keeping your parents pacified and positive rather than gloomy and pointing out all the past mistakes that got you where you are is draining.

that said, i woke up this morning feeling really sorry for myself. 3 kids, no job, no hair, no love life (let alone a husband or a partner), cancer, nausea and on top of that a god-awful headcold.

and then i saw the copy of oprah on the back of the toilet - with the interview with elizabeth gilbert (eat, pray, love) and i thought about how much i disliked her. typical, over-indulged upper middleclass white woman syndrome. moaning about how she didn't really want to be married to her husband but she didn't know why, losing sleep not over how she was going to keep everyone fed and clothed and in school but why she didn't want to have children.

then (more offensively) she had to go to INDIA - my homeland - that produces instant epiphanies in the minds of self-absorbed americans and indonesia to actually realize that it was not all about her.

and after thinking about how whiny she was. it occurred to me that i was actually being really pathetic myself.

(there are brief flashes when i remember that when you take an immediate and vehement dislike to something it's probably something you dislike in yourself.)

so here's what i got for christmas:

3 loving, healthy (in body and often, in mind) and growing girls
1 apartment that i still own (not foreclosed on) in tribeca
2 very involved and still married parents
1 very supportive brother
1 very supportive sister-in-law
2 super-cute nephews
1 delicious niece
1 amicable divorce
1 occasionally helpful and supportive ex-husband

also,

a few really great friends
clean water rushing out of the tap, breathable air, electricity, cable tv (even if it's not working right now), internet
lots of nice clothes (even after selling a lot of them)
lots of organic food in the fridge
cheerful, not-broken furniture

1 cancer that is, apparently, highly curable

an easily-tickled sense of humor (as i say about myself, i suffer fools gladly. even romantically, it turns out... :)

a nice smile.

christmas: the battle between selfishness and generosity

video

christmas eve dinner and christmas itself - albeit gaudium interruptus - was glorious.

shockingly (because we've had less than pleasant past memories) EVERYONE, from the adults to the amazons to ashraf and soraya's munchkins, even the tiniest one who had a headcold, was beautifully behaved at the table

and thrilled with the gifts they received

and even more thrilled with the smiles on the faces of the gift-receivers.

it's so satisfying when you feel you've hit the sweet spot with a present - searched and discovered something the person REALLY (and possibly secretly) wanted.

in the battle of greed and generosity that is christmas, i believe generosity and kindness won out this year.

sasha took masses of pictures of the details, zarina danced around with the baby on her hip and was quite possibly the best member of mirad's audience when he did his annual magic show.

mirad's sense of himself (for years, the only boy and a smallish one at that) in the complex hierarchy of our extended family seems strengthened by these gatherings, where the girls love and fuss over him.

nathalia bounced around with the awkward, vulnerable love and clear-eyed honesty that only a 6 year-old can have.

rara was, as usual, a drop of honey for me, sweetening every moment with her instinctive warmth and compassion.

the hardest part was packing up the car and leaving while the after-christmas wind-down was just beginning... video

Thursday, December 24, 2009

the night before christmas, pt 2

girlworld: we're lounging around looking at everyone's shopping and discussing next week - the amazons go hang out with james and his girlfriend elizabeth.

and how the main course will be prepared.

by my mum, thank god.

poor little omi has a cold and is crying and whingeing nonstop. someone's got to bounce him on their arm all the time.

and if we could just get zarina to stop flipping the camera around - because that's only fun if you're shooting not if you're watching - you'd get a sense of our cozy bedroom with the space heater on full-blast.

video

the night before christmas

and everyone (except the coughing and sneezing children) is exhausted.

my brother and sister-in-law drove half the night to get here. they've both got nasty colds along with the baby.

my mum is cooking and cleaning and organizing like crazy - while at the same time, taking the kids sledding, ice-skating and making them three square meals a day. she and my dad were up til 1 am getting the house ready.

sasha was at a sleep-over so she didn't sleep much. zarina's a mass of adolescent hormones and growls. mirad and nathalia left home an hour after their bedtime, so they are weepy and tired, too.

at the moment, the tempers are about to start flaring so i've slipped out of the kitchen.

my mum's carefully-planned christmas dinner menu started with a standing rib roast. but then my sis-in-law said she preferred goose or duck (after the menu was decided) and the search began - albeit on the phone because my mum was in nyc looking after me.

after a series of discussions and phone calls with my dad in dc over the course of a week,

he bought a 6-pound boneless rib eye roast.

and there were no small goose or ducks to be found in the suburban dc area.

so this morning, whilst looking at the french chef cookbook to firm up her ratatouille recipe and chopping aubergine and courgettes, my mum turned forlornly to the boneless rib eye roast and said, "now i don't know what to do with it..."

she asked me to look up some recipes in the betty crocker cookbook while she finished making scrambled eggs for the kids and bouncing the teething, whining baby on her hip.

i looked up some recipes online and while she was taking the younger ones sledding, i thought i'd be useful by pre-marinating the meat in a bit of tamari, salt, pepper and garlic.

though, of course, this threw off my mum's plan which she had formulated whilst sledding, to grill the meat with only sel de grillon and nothing else.

so when she came home, she took one look at the 6-pound monstrosity and said, "you do it." i had a feeling i shouldn't have tried to help...

then she proceeded to make the rest of her menu in an irritated way and complain to my brother about things.

my brother's reaction to his terrible headcold was to take nyquil - which has made him all spacey and tired - so he is managing to float past it and not offering any advice.

the teenagers have gone with my sis-in-law to the mall which makes them pleasantly absent. though i am sure they will return soon and grouchy, just ready for everyone to have a big argument.

now i'm being summoned downstairs to try to save the beef - am nervous that there is so much riding on it. perhaps i better just cut it up into steaks.

four hours left til the big christmas eve dinner.

Wednesday, December 23, 2009

good day, sunshine!

HURRAY! day 3 after chemo and i feel fine.

despite the frigid temperatures in my parents' house, sun is pouring in the big windows and i'm drinking glasses of fresh green juice along with an artillery of vitamins

and feeling just like myself (except of course when i look in the mirror).

my friend mary schook recommended a supplement called polymva - www.polymva.com. this is day 6 of their regimen (2 tsps, 3 times a day). i'm not sure which one is working better but, despite not being able to fall asleep last night (too much green tea?), i am wide awake and almost thinking clearly.

according to the doctors and nurses, chemo is meant to get worse and worse as it goes on. but so far, i seem to be tolerating it well.

am i an anomaly or have i convinced myself that i am? (that would be quite like me)

two days till christmas, so like everyone else in the suburbs of washington, dc, i am desperate to get to the mall before my steam wears off.

of course, my teenagers are slothing around in bed. rara is still in her pajamas watching tv and eating all the chocolates from the advent calendar in one fell swoop.

the problem with the post-chemo energy surge is that i am so overexcited i want to do ALL of the things i've not been able to face for days. answer emails, send faxes, return phone calls, go shopping, see movies, pack presents...

if i can get that far, i'd LOVE to see avatar - but sasha said it's a 3-hour movie - so let's see if i can make it.

merry merry merry merry

Tuesday, December 22, 2009

great

all the ads running down my sidebar are about cancer.

chemo side-effects, cancer treatments.

and honestly, the novelty has worn off.

my mum's chinese neighbor came over today and regaled me with stories of friends of hers who all managed to subdue their cancer by drinking a chinese herb that looks like wood chips.

they made it into a tea and drank it all day, "like water."

but of course, as soon as they stopped drinking it, they all died. as she says, "when the cancer comes back, there is nothing anyone can do." she did say it very cheerfully, though.

then my dad tried to convince me to have a hysterectomy, because if all the doctors he knows were telling me to do it, who was i to think otherwise?

and of course, my mum interrupted me watching a really silly movie to listen to hui's stories because she kindly brought over a bag of her woodchips.

(which is not to say that i wouldn't try the tea, either - but i refuse to believe in this impending doom philosophy).

here i am all excited because my doctors are saying that it's miraculous that there's no cancer left - and i am surrounded by people who all want to discuss how i will handle it when the cancer comes back.

(on the flip side - all i want is to eat a big, beefy crock of onion soup with tons of butter and cheese melted on top. that's the fall-out from watching Julie and Julia, i guess.)

Sunday, December 20, 2009

yuck




still feeling nauseated and tired today.

guess i shouldn't complain. only day 1 past in-patient chemo which is the worst.

read lisa ray's blog today http://lisaraniray.wordpress.com/

which cheered me up since she seems to be going through the same stuff. injecting ourselves with gcf to increase the white blood cell count. which, in my case, gives me excruciating pain in my hips and legs - it seems that's where my body makes it's store of protection.

i heard from zia it's impossible to get it in south africa, so i am lucky.

in any case, my hair is so patchy, falling out like the pine needles from the tree after christmas. my pillow is dotted with tiny black needles.

i tried to shave it a bit myself in the shower and ended up looking like a doll with a chewed up head.

it reminded me of a baby doll i was given when i was small and loved all her hair and eyelashes right off her. my mother had to sew a little dress with a hood for her so that she still looked civilized.

anyway, it felt weird so i called zarina in with the mirror and realized how hideous i looked.

and then sasha had to come in and try shave it properly with the razor. and then it still looked terrible.

so after that, i had to ask rara to try and shave the remaining parts with a tiny electric razor designed for trimming your mustache and eyebrows.

now i just need some self-tanner for my scalp so it matches my face.

Saturday, December 19, 2009

resting after chemo



exhausted and sick to my stomach from chemo, i had a hospital room full of laughing doctors and nurses at 7am.

"oh my gosh, it's miraculous!"

"you are the healthiest person in here! we've never had anyone go through chemo like this."

not sure which of the millions of things i am doing - but - in less than a month, all my levels are almost back to normal.

in fact, the thing that's making me sick is the chemo.

but i do have a whole list of advice for chemotherapy survival.

first off, diet. give up sugar and animal products as soon as you know you have cancer. you give your liver and kidneys an instant boost so they can work harder on fighting on the disease.

next, if you can, get rid of wheat and soy and reduce grains to a minimum.

the main goal is to make vegetables 80% of your diet. this helps your body cool down as the chemo cooks it.

anyway, am exhausted just now so more tomorrow.

Thursday, December 17, 2009

when mother was away on business

video

so here's what happened to the amazons while i was in and out of hospital with chemotherapy and blood transfusions:

sasha (16) reacted by getting spacier in school and then throwing a party in the apartment (along with zarina) and telling james that she was at a friend's house.

she's become very slippery about what she's doing and where she's going. especially if it involves homework. she runs hot and cold.

zarina (14) got really angry at me, storming into the hospital room and demanding something to eat, being irritated that i've shaved my head, and not wanting me to make cancer jokes.

she stamps around the house and is generally bad-tempered.

and jahanara (10) reacted by being clingy and weepy and very babyish. she wants to sleep in my bed every night. she doesn't want to go anywhere without me.

my mother said, when she called from india to say she was on her way back, she asked rara what she wanted from india; and rara said, "just pray for my mama to get well."

she couldn't come visit quite as much when i was in hospital because she had a cold, so this is what she sent me.

Wednesday, December 16, 2009

cancer is so boring

i am tired of being sick.

i am SO over it.

bored of cancer and being tired.

bored of chemo every friday and having it ruin my weekend.

fed up of having people want to hold my hand when i cross the street like i am four.

and my mum telling me that she and my brother sat down to talk about how they were going to handle my finances and decide where i am going to live - like i am a 95-year old with dementia.

please, i am not dead yet and my brain - slightly fogged by chemo - is not yet gone.

i have to say that i did enjoy the attention at the beginning. and i was tired of being tough and independent and self-reliant. and everyone saying, well, you don't have to worry about ameena, she'll be fine. she can handle anything.

but just for a little while.

now i am ready to be myself again.

i must be feeling better.

Tuesday, December 15, 2009

cancer diaries- more FAQ about hair



your hair falls out from chemo.

and let me clarify, it's not just the hair on the top of your head. it's ALL your hair.

first i was bummed about losing my eyebrows, but the appeal of only shaving my legs very gently and then not at all, losing my mustache, my arm hair which is constantly being ripped out by bandages and tape when i get IVs and injections

and all the pleasures of a brazilian wax without the pain

are really winning out.

the amazons are bothered by my being bald. and my mum is so freaked out, she keeps readjusting my hat at home and she won't let me take it off while she's around (for the next 2 weeks, at least).

but i am enjoying both the shock and the androgyny.

there is something weirdly liberating in having no hair and being so skinny that one's body is all angles. i can suddenly see the pleasure an anorexic might take in having totally controlled the fecund nature of the human form.

it's so asexual as to be beautiful. sculptural and alien.

people are suggesting hats, scarves, earrings.

whereas i am enjoying the purity and simplicity of shape.

perhaps i am strange but - as when i was pregnant - i love watching the metamorphosis of my form. my body never ceases to please and astound me in all the shapes it takes.

Sunday, December 13, 2009

cancer diaries

video

"make an effort"

while going through all this craziness that is cancer treatment, a friend who recovered from breast cancer gave me a piece of advice, "this is the time to wear make-up."

i suggest you avoid going all out so you don't look a slightly mad scrawny old coot with little circles of rouge on your cheeks but

i do think it makes a huge difference to get up in the morning, take a shower, use all your facial moisturizer products and blush and concealer and eyeliner. (whether you put mascara on your three remaining eyelashes is up to you, i don't because i feel i look desperate)

put on any fragrance that doesn't make you gag and wear somewhat attractive clothes that you could leave the house in

even if you just plan to go back to bed.

though if i am going to see my doctors, i might even tart myself up a bit more and dress like i am going to work. then when i ask questions, i feel more confident and professional.

on a day when i am staying home, i like to tidy up a bit and make my bed before i get back into it. it gives me a sense of calm and order and control.

somehow, wandering around in the same pajames and slippers you've worn for the past three days, leaving a trail of dirty dishes makes you feel like a tragic sick person

which of course, despite having cancer, you are not.

you are getting better all the time.

Saturday, December 12, 2009

anger management

one of the most interesting things for me about cancer is how psychosomatic it is.

(i do believe it's an epidemic now because of the crap that's in our air and water - thus in our food as well - but also because of the tension and anxiety-filled lives we lead)

one fact in the literature they handed me at MSK (memorial sloan kettering) is that people who are angry, frustrated or striving for perfection are more likely to develop cancers.

in my case, i'd had a series of earthshakingly upsetting events from last spring to this fall. i was overwhelmed by a sense of injustice and being treated unkindly by people i'd believed i'd been extremely understanding to over the years.

and quite often, as all my feelings of anger and rage welled up inside me, i realized that a lot of my anger was towards people i'd be ashamed to even admit i was angry with. people who meant the best, or people i resented because my own reactions to them made me feel used or ill-treated. my mum, my dad, my kids. even the DOG for a little while.

in fact, i wasn't even that angry at the people who i really SHOULD have been angry with.

though i did keep engaging in all their whirlwinds and dramas. i kept responding to all their accusations. i kept getting hurt when they tried to hurt me.

in my case, in the midst of realizing i was sick, i had to keep letting the anger explode and then face it. i worked with tapping (EFT) http://www.emofree.com/, energy healers http://www.penneyleyshon.com and daria dibennardo, sufi chanting and meditation.

i prayed, i asked everyone of every religion i knew to pray.

and when an incredibly angry ex continued to spin and gyrate his narrative of hurt pride and bruised ego down to absurd levels of details, i was able to just disconnect.

(interestingly, he'd had cancer as well)

so the latest part of my cancer treatment is to stop getting angry.

just writing that is so ridiculous it makes me laugh as i type it.

but i am working on stepping out of the maelstrom, of separating myself from other people's stories and frustations.

i am learning to make a few decisions selfishly. this is what i need - and i will not try and balance out what everyone else needs before i do it - and if it makes other people angry, i will try and move away from them.

i was talking to my mum once when she was angry at someone. i reminded her of the chinese proverb (or quote - can't remember, but that's chemo in my brain) -

getting angry your enemy is like taking poison and hoping that your enemy will die.

you just make YOURSELF sick.

Wednesday, December 9, 2009

what's a uterus between friends?


my hair is falling out in wig-size amounts and everyone is breathing down my neck to have a hysterectomy.

if my mum and her friends could pull out carving knives and chop it out themselves, they would. in fact, every day, i get another phone call from one of her friends trying to convince me to do it.

and the women who have been castrated - apparently, the medical term of removal of the ovaries - compare it to removing your tonsils, your appendix, your gallbladder - all those other parts of the human body that years ago were considered unnecessary.

look at this:

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5105a1.htm

hysterectomy is the second most common surgical procedure in the united states, the first one being a c-section.

the one thing i get asked over and over again, "do you want to have any more children?" and when i answer in the negative, they say, "well, then get rid of it."

i am finding it increasingly bizarre that the half the world thinks that the only value of a uterus is producing babies.

especially since, immediately after its removal, you start having hot flashes (with or without the ovaries) and you have to move gently so that your small intestines don't slide into its place. and those are the minor disadvantages.

and when i ask my doctor what the disadvantage is to a hysterectomy she says, "just one, decreased sexual pleasure..."

polling the women i know who've recently had hysterectomies, the one thing they all complain about is the ongoing pain, even years after the surgery. the doctors all insist that with a laparoscopy, you'll be up and about in 24 hours. though the reality is, even for that, you need two weeks to recover enough to go back to work.

here's something i found online:

Women report a loss of physical sexual sensation after hysterectomy.

A woman's vagina is shortened, scarred and dislocated by hysterectomy.

A hysterectomy's damage is life-long. Among its most common consequences, in addition to operative injuries are:

* heart disease
* loss of sexual desire, arousal, sensation
* weight gain
* osteoporosis
* bone, joint and muscle pain and immobility
* painful intercourse, vaginal damage
* displacement of bladder, bowel, and other pelvic organs
* urinary tract infections, frequency, incontinence
* chronic constipation and digestive disorders
* debilitating fatigue
* loss of stamina
* altered body odor
* loss of short-term memory
* blunting of emotions, personality changes, despondency, irritability, anger, reclusiveness and suicidal thinking

FACT: No drugs or other treatments can replace ovarian or uterine hormones or functions. The loss is permanent.

FACT: The medical term for the removal of the ovaries is castration. 73% of women are castrated during hysterectomy.

FACT: The uterus and ovaries function throughout life in women who have not been hysterectomized or castrated.

FACT: 98% of women HERS has referred to board-certified gynecologists after being told they needed hysterectomies, discovered that, in fact, they did not need hysterectomies.

FACT: Gynecologists, hospitals and drug companies make more than $17B dollars a year from the business of hysterectomy and castration.

http://www.hersfoundation.com/facts.html

if the doctors are not telling me it is a necessity to get rid of the cancer, why would i want to do it?

Monday, December 7, 2009

cancer patients FAQs

video

here's some stuff i didn't know or maybe never thought about:

one: cancer is not a death sentence. you don't need to go tiptoeing around people with a sad sad face like their dog just died.

lots and lots of people get cancer and get past it and get well.

could you please just make some jokes about it?

which brings us to

two: they say laughter is one of the best ways to increase your immune system. if you're going to visit someone with cancer, remember some jokes or funny stories or bring some funny dvds.

in my case, nothing too heavy. i am not feeling very intellectual right now.

three: chemotherapy and all those other drugs affect your vision, your short-term memory and other fun stuff. so if i lose the plot midway through the sentence - can you just laugh about it rather than looking alarmed? for about 3 days post-chemo, i am a nauseated zombie. it's really hard for me to talk on the phone, let alone sit up for great lengths of time.

easiest way to imagine it is a hangover. all those toxins are gradually exiting your body and everything aches. you can't see straight, words get all blurry, and you are so so tired like you were up partying all night (though in the case, it's without the fun).

four: chemotherapy makes you highly sensitive to scent. so if you're going to visit a cancer patient or ward, go lightly on the fragrance. i can tell you that all the victoria's secret fragrances make me sick to my stomach.

in fact, for me, all commercial fragrances make me feel really unwell - so if you've sprayed on something and you hug me, it feels like all the stuff has permeated my clothes for the rest of the day.

that said, i am liking natural oils - like lavender, rose and grapefruit.

however, you might find your fragrance necessary protection because as the chemo leaves my body - like alcohol, i guess - it makes my skin smell awful.

maybe the hugging is a bad idea to begin with.

five: hugging is a bad idea also because chemo greatly weakens your immune system. so in theory, i can catch every germ that goes by.

this doesn't mean i don't absolutely adore all your cute kids. i love them like mad and they make me laugh, but they are wandering around coughing all over the place and wiping their noses on their sleeves.

and all the doctors have turned me into a neurotic hypochondriac so i am terrified. plus, as i said, when you are all hungover, you just want quiet. even with MY kids, i am preferring them from a distance.

on a less amusing note:

six: chemotherapy and radiation are totally different. chemo (for short) is injections or a drip of highly toxic substances - think battery acid and dry cleaning fluid - that rushes through your veins like marauding hordes maiming and destroying until they get to the cancer which they kill. we hope.

in the meantime, if any leaks out onto your skin, as the nurse told me, "let me know if you feel any burning, because it eats through the flesh..."

then there is radiation.

which i have the pleasure not to experience. something like pointing an x-ray machine at the cancerous spot which is meant to dissolve on the spot, but also makes your bones ache.

more later... but just remember, cancer doesn't mean it's all over.

Sunday, November 15, 2009

she did wake up

video

because one eye got a bit swollen because of the mascara from yesterday.

i asked her if she had the feeling that everything would be ok. because, "it will be ok. no matter what happens, it will all be ok."

she said, "no, i don't know if you will die or not."

me: "but even if i die, it will be ok. you will be ok. there will be people to look after you."

zarina: "no, i don't feel like that."

i need to re-think how i am nurturing her. my acupuncturist, mona chopra, asked me a lot of questions the last time i saw her. asking about my fears and questions in life. the last fear - and the only one i don't have, deep down - is that everything will NOT be ok.

she laughed and said, "that's good! because in chinese medicine, that is related to your kidney, to the core of your being. that is the most important thing to know. if you have that, the other things will fall into place."

i truly believe it will. it will be ok.

and i can tell you, too, if you're reading this, that it will.

not that you won't lose your money or your home or your loved ones or your family. or even your own life.

but that no matter what happens, the balance will come back.

that it will be ok. that you will find a way to thrive despite all the external shifts and changes. and i truly believe that in every horrible, devastating earth-shattering situation, you will find some great truth and meaning for yourself.

every time, i fall through that glass floor and i am lying sliced open amidst the shards, something bigger and more important comes through the wounds.

it will be good.

past lives

woke up in a void this morning. so much has shifted in my life that i am no longer sure what i am doing here. i feel like i am walking on glass. something transparent and quite possibly not there. the shift has made me lose my grounding.

then i read the ny times sunday styles of the times section - i rip straight to it every sunday - because of the emotional rawness, after the shiny world of advertising, there is something so compelling about the pages that seem still drenched in the blood and pain and revelation of the people who wrote.

one of my friends said, about some of my blogposts, shocked, "you really bare your soul..." a question, a statement. i have no other choice. being a writer, if you do it properly, is (for me) self-exposure. it's ripping off all those skins of civilization and propriety and self-protection and laying bare the damp, pulsing emotions and hurts and successes and disappointments, that connect you to every other human soul.

midway through the article i started crying. partly, the content - the loss of a parent - the anger, frustration and love one fights and works through in becoming an adult. and the thought of loss in general.

i was thinking about abortions. thinking about babies i'd lost or given up. thinking of lives i'd betrayed. promises not kept. i've never recovered from them.

i am very much pro-choice. and i made my choices. not that they were the right or wrong ones. or that there is a place for those children in my present life.

but so many times, i felt i had no other option. i felt coerced by others, by society, by fear, situations beyond my control. the sadness and anger and frustration - towards my own parents, my ex-husbands, past boyfriends - like a growing cancer, had reached its tentacles so deeply inside me, curling in and out of all my organs that i can't detangle it. the sadness began untrenching, melting slowly into streams of tears.

and i thought about my flesh and blood babies, the ones who live with me, the lanky teenagers who once lay soft and dimpled, cuddling against my arms in the morning. thought about those achy mornings when my head throbbed and my eyes burned after being up half the night as those tiny bodies kicked and writhed in my bed, or as they nursed or cried for bottles or simply comfort after a nightmare.

those soft babies are now full of sharp edges and often hostile space as they find their own way to adulthood.

this morning - these days - i miss the babies.

i'd sent sasha and rara to james' to give me a chance to re-focus, to think about my human form, my purpose, to heal and concentrate on myself. i haven't heard from them yet. they are probably eating waffles with james and his girlfriend and her son.

so i crept downstairs and snuggled into bed with zarina. i hugged her sleeping form. how is that teenagers can sleep like logs? so heavy the weight of their late-morning slumbers that they can sleep through earthquakes and barking dogs and ringing phones and grocery deliveries.

when zarina was about 2, she decided that she needed a big girl bed like her sister sasha and she re-located from the crib (and our bed) to the bunk bed in the girls' room. every night, she'd be put to bed with her sister.

and every night, at about one in the morning, she'd creep back into our room and come to my side of the bed. she'd tug my shoulder or my arm and whisper, "it's me." as if i'd been waiting impatiently for her since i'd tucked her in and listened to her prayers.

in the darkness, i'd pull her up into bed beside me and she'd sleep in a variety of positions - many of which included slightly strangling or suffocating me as she stretched across my body. most of which would not have allowed me to sleep had i not been so exhausted already with a full time job and two small children and a husband who was so often weak and unwell.

this morning, i lay in her bed and hugged her and, looked at the smeared traces of mascara around her eyes, the red adolescent lips, the muscular shoulders she got from me, the powerful ballet dancer's legs.

i thought about holding her when she'd had a seizure when she was a year and a half - a few months before she graduated to bunkbed. her soft body was suddenly stiff and gray, her eyes rolled back in her head, her mouth foaming and green with vomit - i grabbed her in a blanket and ran down the street to the doctor's office, breathless and dizzy with panic, the blood rushing to my head so hard i could barely see.

every ten minutes, i fed her one teaspoon of the syrup of canned white peaches - a surprisingly little-known but very effective remedy for dehydration during a stomach virus - until she sprang back to life, the color rushing to her cheeks like persephone in the spring.

now here she is, impossibly huge and uncontainable, strong, thriving and increasingly self-aware.

given the doctors' currently omnious diagnosis of my health, i worried that if she woke found me sobbing beside her, she'd be terrified.

however, i needn't have worried. she is a teenager on a sunday morning after a night of "hanging out" with her school friends. nothing like her mum would or could wake her.

and eventually, i stopped crying.

and i came back upstairs to make some oatmeal and a cup of tea.

and think that maybe why i am here is to write.

because without the writing, without the art, the conversation and the stories, without the connection with other humans, our lives are fragile and incomprehensible and unexamined.

Saturday, November 7, 2009

It's about love



someone asked me to think about my purpose in life. what am i here for? what do i want to do?

and while i was lying on the table with needles hitting various nerves in my hands and feet and stomach, i thought about why i was here. what is important for me? what touches me so much it makes me cry?

for me, it's about love. it's about compassion. it's about forgiveness. it's about the kind of love where you dissolve, where you love someone else more than you love yourself. where you are willing to put aside your own desires, your frustrations, your anger, even your judgement to love someone else unconditionally.

it's the way a mother loves a child, especially a baby, when it feels like every single one of your needs - even the immediate physical ones - becomes secondary to your being a lifeline for another being. for a new life.

i'm not sure how it works, but it's the way when you hold a hurt or angry or frustrated child and feel her body melt in your arms, it's the love that makes her go from brittle and bony to soft and yielding.

for me, it seems to be best expressed through motherhood though i've tried it in relationships - perhaps i still believe it in relationships - though it only works when both people are willing to love body and soul. otherwise, i find, you are eaten up by the ego of the other. in my case, perhaps i wasn't patient enough to see it through, until my partner came round full circle. perhaps, he would have.

i think my purpose is to be loving, to be caring, to be nurturing. sometimes, i wonder if i've gone too far - if i work so hard that i appear to be invincible, so resilient as to be superhuman - and if there are too many people who see me as an all-powerful mother figure, people who ascribe powers to me beyond my capabilities. people who see me as so powerful their mission is to knock me down.

but my purpose again.

to bring love into my world. to move away from anger and hostility rather than fighting it. to heal and help people who are open to it.

i'm not sure what that means i can do. love alone can't do much. but without love, or passion or commitment, not much can be done anyway.

Thursday, November 5, 2009

silence

lying face up on my bed staring up at the skylight.

my favorite place in the entire apartment.

feeling so incredibly lucky.

amazons are all at school and i have my 45 minutes of cleaning and washing done. i can walk, breathe, think and remember (most things).

and the light is just so beautiful.

time to yourself. quiet time to let your thoughts wander aimlessly has to be life's greatest luxury.

there's not a sound in the apartment short of the constant hum of muffled machinery and traffic that is new york.

i block my ears for total silence and instead am deafened by my heartbeat, the blood pulsing through my veins, my lungs expanding and contracting, my mouth and throat consecutively swallowing.

i open my eyes, take my hands off my ears. i am better present.

an aware presence in the moment.

Wednesday, November 4, 2009

flashback amazon tv friday morning

on a happier note, friday morning before halloween.

wow, it's practically a week already!


video

spinning

"Real knowledge is to know the extent of one's ignorance." - Confucius

yesterday morning (after bleeding so much the night before that despite 3 pads and a wad of paper towels, i came home with blood squashing in my boots), i was so wrecked i could barely get out of bed.

the current diagnosis thrown in my (emotionally irresponsible) ob-gyn is uterine cancer. which weirdly, i don't believe. in fact, i don't believe i have cancer at all. i have decided that it is mind over matter. if i believe i'm well, i will be.

so when the amazons went to school, i sat down at the computer to look at the mid-term school reports to prepare myself for the parent-teacher meetings on friday. i started with sasha. one teacher after another said she didn't turn in her homework assignments. she didn't participate in class.

my head started throbbing. we've had learning diagnostics, psychological help, tutors four days a week - all this stuff i am saving pennies to afford - and sasha keeps saying she has already finished her homework. she chats with her friends online til midnight and then says she is so exhausted in the morning she has to drink coffee and it makes her dizzy. last night i just unplugged the internet at 10pm.

but they were all complaining that they had homework to do online and needed to access websites.

add that to toby biting sasha's face on sunday - someone suggested a dog trainer - my car still being in the shop, my bank accounts all overdrawn and my credit cards maxed out and i got so dizzy i could barely catch my breath.

last night at dinner, i tried to ask sasha what her reasons were. of course, the answers were all the same excuses i've heard over and over again - i turned the assignment in late, the teacher wasn't paying attention, the teacher doesn't like me, i asked for help but no one helped me.

i probably should have been filming but i am at a loss. any child psychologists here? maybe she DOES need ritalin. but i hate giving my kids drugs.

15 minutes of meditation before i went to meet adam fuss at bubby's - hoping for some clarity - and suddenly so nauseated i couldn't eat more than a few bites of broccoli.

time to finish washing the breakfast dishes, making beds, clearing up.


video

Sunday, November 1, 2009

night of (shattered) illusions

video

i don't know if there's any place where halloween is explored in all its manifestations than nyc.

there's the liberation of the mask - the people who do strange and uninhibited things while hidden.

there are those who dress up to reveal secret desires - exhibitionism, sadism, masochism, sexual ambiguity.

and the ones who are silly, who dress up like fruit or hotdogs;

there are the intellectuals - or the ones who believe they are clever - who have to explain that they are the most recent black hole or swine flu vaccine. costumes that have to be explained are like sentences written by young men in creative writing classes, "what do YOU think it means?" it's sloppy, it's lazy, it's a cover-up for a last-minute idea that you threw together that doesn't quite work.

there are all those bright, professional young women wandering around the street at 4 in the afternoon in g-strings and impossibly high-heeled shoes when just that morning they left the house in tidy j.crew or banana republic suits and unremarkable aldo pumps.

and the parties begin days in advance - building to a complete decameron by all hallow's eve - the debauchery covered by the fact that everyone has metamorphized into the mask.

as for me, i was a wood sprite or a forest fairy - and i was one of those sloppy last-minute dressers because i bought my accessories for discount prices on ebay and they didn't arrive 'til an hour before the party and the shoes i had planned to wear were just too uncomfortable for me to walk to the lower eastside.

i suppose, in the midst of my disintegration, i secretly wished to be pretty and effervescent, innocent and airborne.

and i thought i got it right until i showed up at the green halloween party and discovered that more or less everyone was festooned with silk flowers and ivy and my ricky's butterfly wings were not nearly as lovely and chic as so many of the ones around me.

the only pleasant thing was that as the evening wore on and people became drunker, i got more and more compliments on my costume, until i (wisely) standing beside the tequila bar became one of the most photographed and congratulated members of the party.

Friday, October 30, 2009

walk don't walk



don't get stressed.

calm down.

just relax a bit.

anyone who knows me would say i am the most balanced and resilient person they know (maybe they are just saying that to be polite, but i do tend to weather big storms with flexibility - and i'd like to think - grace. mostly)

so when people say that to me, i want to fall apart laughing. avoiding the landmines and open manhole covers that dot my life requires careful, advance planning and i've never been good at that.

i like to say that i'm someone who confuses impulse with intuition. i tend to make decisions based on other parts of my anatomy. even when it is totally obvious that they are terrible ones. look at the people i fall in love with. (stop laughing).

look you can mess with me. sadly. you can hit me, lock me in a room, spend all my money, destroy my possessions or be generally abusive. and i get right back up again and keep going.

but you hurt my kids and i lose it. my achilles' heel. they suffer and i can't seem to get past it.

so i've finally met my match and it's doing me in. you know how people tell you, "forget veggies, my grandmother lived to 108 and she smoked a pack a day and lived on lard"?

that's because she wasn't stressed.

for me, despite regular exercise, fresh vegetables and fruits, no dairy, no smoking no alcohol, rare late nights, very little meat, wheat, corn or even soy, drinking 2 liters of water a day, my body is disintegrating so fast i can almost feel it falling apart around me.

my liver is not functioning properly, i have kidney stones, my ovaries have shut down, i have eczema, possibly cervical cancer, an infection in my eustachian tubes and that's just the tip of the iceberg...

not to catalogue the unpleasantness or set up a pity party, just to remind you - you can do everything right, or everything wrong, and the stuff that crashes through your mind is what will bring you down. oh that and not rushing to the doctor the minute something seems wrong when you are over 35 - and convincing the doctor to pay attention and do something about it...

in my case, the incredible brutality and selfishness of the men around me. i thought i could handle anything. turns out i am only human.

Wednesday, October 28, 2009

amazon tv: zarina turns 14

oh they are so much more glamourous and self-possessed than i ever was.

one of zarina's friends spent 3 weeks planning a surprise party for her. after james offered his studio for the party and then backed out at the last minute, frida and lauren convinced her father bob to let them use an extremely fabulous empty storefront on north moore street - right next to the chic locanda verde and across from the cool smith & mills bar.

there was a dj, a lightshow, james bought an enormous strawberry shortcake and tons of soft drinks and potato chips and i bought ten pizzas (they only ate 4).

video

Saturday, October 24, 2009

why you should not let your kids sit at home all day just because it's raining...

not that i'm setting a good example but there you go. video

amazon morning tv - weekend edition

video

ok, how do you get your 16 year-old off the sofa and out to do something?

rara's with james, zarina got herself up at the crack of 8 and ran out the door to her ballet rehearsals. she is the picture of motivation. i have moments like that myself.

but not today. could barely get myself out of bed myself. didn't even manage to go to my dreamweaver class. barely finished the homework.

i'm the sort of person who has the adrenaline kick in when i'm under pressure and then when it all starts to sort itself out, my body disintegrates around me... i want to put a pillow over my head and go back to bed.

sasha's watching "the mask" - i need one of those.

maybe it's a day to go shopping. good capitalist that i am, this might be a moment to do something for the economy.

or take a pilates class?

Friday, October 23, 2009

upstairs downstairs

so we're finally all used to life at 9 north moore. the amazons enjoy having their own space downstairs. it's a sort of mini-haven for teenaged girls.

actually, our whole apartment is girl-world.

upstairs is work/meals/tv - MY space

downstairs is the enormous walk-in closet, the sofa and lots of space for fashion shows, skylight for flattering adolescent faces and a washing machine for all the towels that end up all over the floor.

as for me, i am feeling a bit like job - blown away by the scourges and maliciousness that seems to surround me.

the rats ate the wiring of my new car. the infestation of fruit flies continues. my health is questionable. james is taking me off his insurance just in time. the amazons are rude and spoiled.

it's not that i don't see the part i play in all this but it still makes me tired. somehow i am feeling so exhausted that when i went to the doctor yesterday and she said she was worried about my possibly having cervical cancer - i felt totally relieved.

just the thought of an escape route set me free.

the end of worrying about bills, making sure everyone does their homework and eats meals and doesn't get in trouble. the end of balancing exhusbands and parents and my career and even the dog.

suddenly it all seems like an inconsequential game.

i was walking down the street looking at the clear blue sky making the tops of the buildings glisten

and i just started laughing.

it's time to get back to just writing. and if it goes nowhere - what difference will it make?

amazon morning tv

video

here's what happens on a normal morning... i am going to watch these videos when the amazons go to college and i am having a peaceful breakfast ALONE...

morning at 9 north moore #1 - part 2

so every morning i drag myself out of bed and stumble over my first hurdle - cutting up fruit, making eggs, tea and heating up banana bread - and then forcing the amazons to eat breakfast before they leave for school.

also to make them be somewhat polite to each other in the process.

then in the silence that follows the frenzy as they rush out the door, i clean up the detritus of the tsunami of their morning prep...

admittedly, this could stand some editing. but no time now.

i mean, i can't do EVERYTHING - can i?

video

morning at 9 north moore #1 - part 3

video

a slightly calmer morning at #1

having trouble getting moving today. i suppose - since the amazons will all be out - i should really go do something fun, but i am still in my pjs at 10 am...

all of a sudden, i am seeing myself on a continuum - from my great grandmother to my paternal grandfather to my mum & my kids - i sometimes feel i only exist in relationship to them

i am a bead on a spiderweb of connections...

Friday, October 9, 2009

sleep

or lack thereof.

all the craziness of my ex-husbands and my insane teenagers has me opening my eyes and listening to rara's laptop murmuring, "it's twelve o'clock.." when i know i have to be up before 6...

it's amazing what destruction people will wreck when they are angry and it's tragic because it leaves scars that never completely heal.

anyway, living in a sort of telenovella now.

Wednesday, September 2, 2009

out of shape, out of mind

all of a sudden, i am yearning to start writing again. after years of first putting it aside and then just tossing out the sunday book review along with all the advertising circulars, i am reading it again.

i am aching to exercise that writing muscle. that excursion into the far reaches of a character's emotion, that tight-rope walk between communication and preciousness. the desire to tell stories.

is it my new home, a sort of cave in itself, where the windows let in light but conceal the world? the quiet invites a journey inward.

or the exhausting ordeal i dragged myself through in the past year: no work, hub and excitement of the advertising industry receding: no money to shop and go out, the material world stepping away from me as well; no real romantic partners, the pleasures of the flesh and the emotional struggles of communication giving way to an unencumbered soul, a consciousness set adrift.

i feel unmoored and shapeless - as if my soul has come loose from my body - an amorphic presence uncontained in this form of a middle-aged woman.

i am not me.

the rich sensual tapestry of physical experience throws itself down like a carpet at my feet. where do i step first?

Sunday, August 23, 2009

are you there, god? it's me, mum

there are moments when i hate my teenaged daughter. sometimes both of them. when i feel so exhausted and enraged i feel like going in there like freddie kruger from friday the 13th. (i hope i have my villains right).

because there are all these books written on adolescence and the stuff they go through. and it's true, it is hard to separate from your parents and forge your own identity and independence. but i swear to god, it is hard on a mum.

maybe even harder than it is for them. because you don't have any excuses. you HAVE to behave like an adult. even when you are screaming at them through clenched teeth to keep from throttling them.

it is so tiring to go out and have every bit of your outfit picked to shreds, then your body (and please, i am a lumpy and getting lumpier everyday, 45 year-old), then your way of speaking, your political attitudes. i am single and have two extremely antagonistic ex-husbands and a sharp-eyed mother and i'm not quite sure how much more battering my ego can take.

the amazons are with their dad this weekend and it's such an incredible relief. because one is scattered and disorganized and constantly changing her plans - which throws off everyone else. and the other is so angry and insecure and unhappy that she can't help taking it out on everyone around her. every meal becomes an exercise in diplomacy.

eating out is worse. we can't come to a decision on a restaurant and if we do, one kid decides she just wants to stay home. no one wants to walk the dog before we go. unless i run around in a whirlwind, tidying up before we leave, the process of leaving involves changing outfits 3 or 4 times, leaving shoes and bags in their wake, that i will have to clean up when i stumble in on my return.

walking down the sidewalk, where their humiliation of a mother is exposed to the world in the bare light of day, they begin to point out how hideous my shoes are and how badly my dress fits me ("no offense"). and, "oh no, noooo you are NOT walking around in that hat."

if i say something, the idiocy of my opinion is immediately pointed out. because the health teacher in school said, "you can't say things like that. i can't even be friends with you anymore..."

it's amazing i managed to make it this far without their help.

so are you there, god? can you take them back for a few years?

Wednesday, May 6, 2009

my haircut

ugh! frustrating past few days - running around in the rain - people grouchy and changing plans at the last minute. am so tired of flaky people.

anyway, i did get a good haircut, i think... video

on the other hand, my editing/shooting skills leave something to be desired.

Friday, May 1, 2009

the amazons get a whole bunch of new clothes - episode 1 & 2

james traded a painting to someone who works at AEFFE - the italian fashion company that distributes jean-paul gaultier, moschino, alberta ferretti and studio pollino...

video video