eraser head

i've heard all kinds of things about chemo head.

you're spacey, forgetful, self-absorbed.

but i've just started to learn about the foliage on top.

my hair is a coarse, curly mop that seems to be growing up, directly vertically.

since i am still scrawny and hollow-chested, i look like a combination of a q-tip and one of those cartoons of stringy, grouchy old ladies in housecoats and sunglasses.

i talked to a few friends who'd had chemo. one told me her hair eventually went back to normal (or whatever she'd had previously) but i never asked how long "eventually" was. another friend on facebook just posted that hers was still curly FOUR YEARS later.

i am not a patient person.

other friends on fb kindly suggested i try a hairband, hairclips, or other accessories - but rara took one look and said, "mama, take that off. it looks really bad..."

my dad said, "keep putting oil on your hair, every night."

a guy i'd like to impress said, "just let it grow out."

i am seriously considering shaving it again and in the hopes that the new incarnation is something different.

i am open to any and all suggestions and information. especially from anyone else post-chemo or someone who was born with a jew-fro. how long? how high is it likely to get? yes, i know i'm a semite but i liked my indian hair.

just as i suspected

the alliance for natural health uploaded an article about how cancer doctors make money on chemo medicines, often prescribing medicines that are less effective or ineffective.

hello? why am i surprised? when i walked away from the last six weeks of chemo, my doctor told me i'd be dead in 12 weeks.

when i questioned my treatment in the hospital, she sent a battery of psychiatrists to see why i had a "death wish."

and when i suggested that one might heal one's body better with diet and supplements, they said, "those are just fairy stories."

the article talks about that moment in the hospital or the doctor's surgery when you are so frightened that you just do what they tell you. you'll do anything and everything they say - suffer anything they impose on your life and your body - just to make it go away.

so as i drink my kale-blueberry-melon-avocado-coconut-water smoothie to help my body recover and detox from the ravages of chemo, i think that sometimes fairy stories come true.

ameena in medical-land

today, i discovered the world of life extension and dr.eric braverman.
dr. braverman was the cover story on life extension magazine which showed up on my doorstep along with some of the hundreds of supplements i seem to be taking. his theory is - fix the brain - and you will fix the body.

so far, post-chemo, my body seems to be doing remarkably well - except, as i discovered from my tests today, for some bone density loss. but i am small, skinny and in premature menopause from the chemo so that's to be expected. time to start lifting weights.

imho, the problem is my brain. my short-term memory is shot, i have trouble focusing and concentrating (especially when my apartment is full of kids, which is almost always), i miss social cues, i can still do creative work but at nowhere near the speed i used to be able to churn it out. i have the mood swings of a teenaged girl.

(speaking from ongoing experience)

so here's what happens at dr. braverman's impressive complex on 23rd st and park avenue south.

you walk into the sleek and well airconditioned offices after filling out 30 pages of medical information and psychological tests. everywhere you look, there are tv screens with dr. braverman talking to different interviewers about his theory on brain health and anti-aging. on every table are a few copies of his books, "the edge," national bestseller,"younger you," "the younger and thinner you diet," the magazine with him on the cover, there is a shiny shop filled with life extension vitamins (run by a brilliant man called anthony romuli with so much information on alternative cancer treatment he should actually be running his own operation). there are stacks of free dvds of dr. braverman on the tyra banks show.

then they begin. blood tests - vial after vial of blood - so much so that it seems i ran out and had to come back later because my veins refused to surrender any more.

then the usual vitals, heart rate, blood pressure, height, weight. then an ekg, a bone density test, a battery of brain tests - some computer games, some that involve a cap being placed on my head with gel and sensors that are scraped into my scalp (that does hurt). the last is called "the beam" test and apparently uses an electric wave to map your brain.

fortunately, i have so much paperwork from memorial sloan kettering that i can avoid the ultrasound. but they still want to do a pet scan of my whole body.

they send me into the billing person. she is lovely and understands my situation, but if i really want the correct, total body diagnosis, i need about $11,000. maybe my insurance will cover it, but i have to solve that part myself.

so i go with a greatly discounted reduced number of tests. we don't manage to do the pet scan. or the stress test.

still, in the end, i find out that my brain really IS working. i am intelligent, confident, capable and "a fireball" (according to the good dr braverman).

the problem is all inside my head.

it seems that the cancer and/or the treatment was such an assault that i am suffering from post-traumatic stress disorder. they recommend a week of extra sleep, anti-depressants and hormones to rebalance my body.

oh - and another $300 of supplements.

according to them i am living on adrenaline rather than their "four brain humors: dopamine, acetylcholine, GABA and serotonin." braverman's theory is that by finding out which of the four humors you are lacking and eating to address that, you can begin to heal your body's illnesses.

however, at the end, it is not clear whether i am lacking serotonin or dopamine, and they can't seem to decide. the supplements should address both.

according to their tests, when i am back to myself, i can take over the world.

ha-ha-ha (evil laugh)

RIP Giovanni Russo

Obit: Giovanni Russo, 45 - Media News - WWD.com
it is sometimes pathetic how weak and human i am.

i thought saw my friend giovanni russo's name as i turned the page of wwd today. i thought i imagined it: "giovanni russo, 45."

i had to turn the page back and read it three more times before i believed it. "giovanni russo died after a long battle with cancer..." he had three kids. i remember his wife florence, pregnant with their oldest son, alex, while i was pregnant with rara.

for a second, i felt like my head was going to explode.

there, but for the grace of god, go i.

when giovanni first moved to nyc, we worked together feverishly on pitches. he was smart, funny and super-talented. he had a single desk he rented in a modelling agency in a huge warehouse office space. in the following years, i watched him fly past me in his career, perhaps with a slight degree of envy, but mostly with a sense that it was absolutely the right thing to happen because of his clever ability to turn things on their heads. i'd give him words and ideas and he'd come back with incredible visual interpretations that took the work to the next level.

when i saw the obituary, i suddenly remembered walking with him to the elevator of my building, zarina was a toddler then (now she's 5'9") and she ran after him because she liked his tin-tin watch. he looked at her and said, "i'm looking forward to having one of those one of these days." i think he might have shown me a very small picture of florence then. maybe i imagined that and he just told me about her.

today, i made sasha and zarina get dressed and we walked through the searing, surreal heat to his apartment. it's just a few blocks from ours, across a vast, uncovered pedestrian bridge that makes the heat shimmer still more on its metal and concrete frame.

their street is a deserted cobblestone square, cut-off from the rest of tribeca.

the apartment was cool and festive as a summer wedding. lots of people in black but it's nyc and everyone wears black. there is beautifully-catered food. flowers everywhere, lovely cakes, even a surfboard covered with red and white roses. my post-chemo brain doesn't remember what florence looks like so i had to make my way through the guests asking someone to introduce me.

there is a pretty three year-old stealing grapes from a fruit plate. she must be giovanni's youngest child.

florence is blond, french and lovely in a pale pink silk shirt. i open my mouth, "i'm an old friend of giovanni's," but i choke and my voice slips back down my throat. "please, please call me if i can do anything. even if you just want to talk...my daughters can babysit." my eyes filled with tears, i hug her. and i try to step away before i destroy her composure by disintegrating into a pool of emotion.

i wonder if this is what my apartment would have been like. who would have come, of my friends and colleagues? someone keeps saying to us, "please stay and have some lunch, have some cake. there's so much food." she told me her name, but my brain can't retain it. there is so much food. it looks gorgeous. my mouth is so dry i can't imagine swallowing any of it. when i bite into it, it will turn to cardboard.

i'm ashamed that i can't manage to stay or talk to anyone. i should have spoken to his children, to his parents, to his sisters. sasha and zarina wanted to leave.

we walked back home the sun burning like hell on the backs of our arms and legs.

why do some of us stay and some of us go?

the all-access pass has been revoked

the free-pass of having cancer is over now.

what i've discovered about cancer - or, i suppose, any earth-shattering incident in one's life - is that it never really goes away. the impact on your body and your soul repairs itself more slowly the faster you try and recover.

on a cheerful note, i LOOK well. the exercise and the diet and mary schook's experiments changes make my skin glow and my hair thick (though curly). but that makes it all less believable.

while everything and everyone in my life seems to have gone back to normal - or as normal as they ever are, the shadow of the chemo and the cancer darken the edges of my consciousness. i am downing supplements by the fistful, avoiding sugar, wheat, animal products, peanuts. drinking liters of water. i think i am calm, but i wake with wildly destructive hallucinations. this morning's dream involved my being chastised and in my defence, i swallowed a bowl of lightbulbs. as i awoke, i imagined i could feel them in my stomach and i tried to move them so they wouldn't crack and the shards of glass slice through my intestines.

during the day, my brain still moves slowly, painfully so, at times. my sharp memory briefly resurfaces but most of the time, words and events evaporate so quickly i often don't believe they happened.

my body is almost back. i'll be swimming, doing pilates, working, racing around the city at top speed and then all of a sudden, one afternoon, crash so hard i can't move from my bed.

i come from a family that is in equal parts fiercely loving and breathtakingly violent, in word, if not always in action. they supported me through the treatment with a tsunami of caring and attention that sometimes knocked me down and left me gasping for air. and as soon as it ended, they lost patience. the more devoted in helping me, the harder they dropped me. the more they clung to me during chemo, the less understanding about the continuing effects of cancer and the cure and the struggle to catch up with my life.

though even i believed that treatment would end and i'd leap out of bed and go back to my usual self-destructive pace.

i agreed with my sister-in-law that it's so tedious to continue to deal with all the side-effects of illness long after the excitement of the life-threatening emergency is over. but boring as it is, i have to let it run its course.

four months post-chemo, i am often overwhelmed and daunted by tasks that require more than one or two steps. i read letters or email and can't quite figure out what they are communicating. i don't always understand what people are saying and i have to listen to directions or explanations over and over again until a few words soak in.

i panic easily and swing wildly between excessive caution and recklessness. my moods are a constant rollercoaster. if i am anxious, my brain retaliates by becoming even more opaque.

more often than not, i am at a loss at social events. i miss cues. i find it impossible to make light conversation.

of course, now that i'm not sick, i have no excuse.

the advantage is that i float on the surface of life. i am only briefly worried because a beautiful beam of sunlight or a smiling dog or waving baby can make me forget everything else.

do you remember that joke about alzheimer's? it's the most entertaining disease because you meet new people and go to new places everyday.

something like that.

i guess it's not so bad.

the amazon diaries

i LOVE the approach of summer and the happy-silly-crazy way we all emerge from our winter cocoons.

this year, i am persephone, feeling like flowers are bursting into bloom beneath my feet and friends are coming out of the wood(work) all around me.

oh! all you people!

i am so HAPPY to see you.

this weekend, the amazons and i socialized like mad. rara and i had dinner with a friend on friday night. we sat in the storefront and opened all the windows and ate takeaway sushi (me & tony) and fried chicken and chips (rara) and let passers-by look in and wonder what restaurant we were in.

saturday, our neighborhood teemed with people here for the tribeca family street fair and the united nations school was buzzing with children for the international book fair.

by the afternoon, the apartment was overflowing with teenagers hanging out, making macaroni-and-cheese (their favorite food, it seems) and watching tv.

saturday night, we went to dinner up in westchester - a parent in zarina's class had invited a handful of other parents along with our kids - and laid out a feast of pakistani food for the parents while the teenagers (along with poor rara) romped around in the garden and the tv room. (oh the pleasures of having a house in the suburbs!)

sunday, we had brunch with fernando and nadine estrada and their shockingly beautiful children at the plaza's newly re-opened palm court (great company, fab location, but average food and v v slow service). we celebrated their buying a pied a terre in nyc.

sunday afternoon, john demaio, my lawyer, his friend margaret and my painter friend, fareen, dropped in unexpectedly to photograph fareen's paintings which are in the storefront. we all sat around the table and drank iced water and lemonade as the ceiling fan whirred.

in the evening, we had dinner with brooke allen and peter aaron at edwards. we celebrated peter surviving a bizarre accident where a tow-truck dropped a car and it rolled onto the sidewalk and broke both his knees. despite recent history, noisy firetrucks and incredible humidity, we ate outside on the sidewalk, enjoying running into people we knew as they walked past.

heat awakens your senses, the sunlight gives you more energy and the desire to stay out longer. my mind is returning, too and everyone's stories seemed to wind around and through me and mine.

my friend marianne castier came over and we chatted far into the night.

i talked to more people (who were not medical staff) in 48 hours than i saw the entire month of february.

the chemo blunted my nerves - my hearing dulled, my vision clouded, my fingers lost sensation, nothing tasted very good and all i seemed to smell were medicinal products.

the dissipating drugs combined with the heat and sun (which makes everything sharper and brighter) makes me giddy.

add to that, the pleasure of conversation and engagement with others (when you are sick, you are distant - you sit or lie in a bed, while everyone else sits in chairs - you are trapped in the drama of your body) and i am immersed in LIFE.

spring is always delicious but this one is better, sunnier and more joyful than ever.

in my 20s, i used to joke that i could never be a good "spiritual" indian because i am a dialectical materialist.

now i am grateful for the way hedonism and the spirit run together.


n.b. thank you for the pictures, awa gueye. she is very good at capturing moments.

the problem with fear or - you can run but you can't hide

this week i felt the fall-out from "the black plague" effect of having cancer.

one of my oldest friends in new york city just ditched me when he heard i had cancer. rather, he sent a one line email. and then nothing more. this is a friend i used to call when my kids were little and i was broke and he'd show up with cash. or he'd come over to my apartment with his laundry and hang out with me while he did it in our big machines.

i loved him. the amazons adored him.

he was the person i walked the street with - along with my kids - on september 11, 2001. that day, i ended up walking the streets trying to locate my kids and then trying to get them somewhere safe, from 8am to 10pm, wearing a t-shirt with wonder woman on it and the omnious line, "you can run, but you can't hide." i never wore that shirt again.

my friend was someone i'd thought of as a part of my family.

though he'd been travelling a lot of late, i'd see his byline whenever he was in new york city. and i just assumed that we were still close, just out of touch a bit.

it turns out i was wrong.

i think the problem with cancer is that - for some people - it's just too big. too overwhelming of a burden. it makes you feel so powerless and ineffective, your instinctive reaction is to hide your head in the sand and pretend you don't see it. pretend you don't really know. just close your eyes tight and hope everything will be ok. and then just cut it out of your life.

just a day ago, a once-upon-a-time-friend - an old colleague of mine in new york city - met one of my friends who was visiting from abroad. they discovered they had me in common.

the once-friend, now colleague said to my out-of-town friend, "you do know that ameena is not well. she is very VERY sick." the colleague said this with the weight of finality.

i should add that while absolute strangers are sending me notes of encouragement on facebook and twitter, this colleague has also managed to avoid me for the past year. i haven't heard a word from her. and we were once friends.

my out-of-town friend said, "actually, she's cancer-free and feeling really good."

my colleague said, "well, is anyone REALLY cancer-free?"

my friend assured her that i was drinking kale juice and eating cruciferous vegetables in huge quantities so she wasn't worried.

and the colleague, not one to give up on her doom and gloom so easily, told my friend, "well... do you know ameena's a muslim?"

when your own life is complex and difficult, it's hard not to drop your friends into the black hole of non-existence when they start slipping.

i know i've lost touch with friends when their problems seemed to engulf my own.

so here's my advice - cancer does NOT equal death.

it's not contagious.

it's not insurmountable.

when someone is in the throes of chemo or radiation, even the smallest bit of help is so useful as to be magnified ten times. especially if you arrive unexpectedly when you're most needed.

even a kind note or an email or a phone call.

you don't have to show up every single day or be there every moment. because then you risk resenting the person you are trying to help. (and you might question your own motives).

and no one wants to feel like a burden or a chore either.

be a light. a sudden flash of love or energy.

make someone laugh for an hour or even 20 minutes.

not least because, if we don't manage to fix the multitude of ways we've made our world of balance, cancer is likely to hit closer to home next time.

learn how to handle it with grace at a distance

and you'll approach it with wisdom and intelligence if it comes nearer.