Wednesday, December 15, 2010

excuse the crazy hair

15 days' later
so it seems there is enough of the beaucell product to last at least a month and a half, unless you knock one of those superheavy jars off the edge of the sink and spill it all over the floor. (i am amazed i haven't done that yet). what you'll notice, if you can tell from these low-res images, is that my face is rounder all over - basically, it's lost its post-chemo old-witch gauntness.

personally, i was never bothered by the gaunt look because it gave me cheekbones - but after getting so skinny and dehydrated, it looked pinched rather than sculpted.

and of course, my hair keeps sprouting like the crazy afro it is. though now it's flopping to the sides a bit, like tulips after they've bloomed. i do have a list of vitamins and products that will make your hair, eyelashes and eyebrows grow faster and better after chemo so if you want to know, email me directly.

i know i should cut my hair. everyone tells me it'll get better. given all my overwhelming post-cancer expenses, the haircut is not top of my list for a splurge.  i am so relieved to have the stuff on my head for the winter (it was VERY cold being bald in january and i hate sleeping with a hat on, even if it's cashmere and versace or marc jacobs or chanel).

back to park51 and juggling the expectations of muslims, the support of the downtown community and the inexplicable desire of so much of the american public to prefer rumor to fact.

Wednesday, December 1, 2010

live for today

live in the moment. i am trying. but along with the actual pouring rain and darkness today, i've got a metaphorical cloud over my head.

i've just met my second friend in the past few days who had her cancer "cured" - through chemo and/or radiation and surgery - and had it come back a year or two later, and then come back again.

it doesn't help that this is around the same time last year that i was admitted to hospital and was well into my chemo treatments - so every subway ride reminds me of my weekly trips up to memorial sloan kettering. the holiday season from halloween to christmas is when i lost control of my life.

as someone who used to see myself as totally in-control, self-possessed and capable, i was so incredibly helpless that i couldn't even walk to the kitchen and make myself toast. just thinking about it fills me with nausea and exhaustion. i can almost feel the burning in my veins as the chemo drugs surged through me. and the panic, the panic.

i was saying something to sasha about thanksgiving last year. i was cross because i had ordered a deep-fried roasted garlic turkey from and i hadn't been able to taste it because i was sick and vegetarian at that point.

and sasha said, "i don't remember anything at all about last thanksgiving."

i think my kids blocked out the whole winter.

this year, i just kept thinking how grateful i was to not be living that any more. i am so relieved to have come out the other side.
i'm also so grateful for all my friends, especially zia and my brother, who did research into alternative therapies and diets when i was too sick and weak and paralyzed with fear to search the internet.

one of the reasons i was able to recover so quickly and so completely, was all the juicing, vitamins, fresh vegetables; the poly-mva, the zhikr and meditation. the supplements mary schook and sheikha fariha and mona chopra recommended. i had a great support system of people who didn't trust the medical establishment.

and i was lucky to have my parents come and hold down the cramped and miniscule fort for the amazons.

for all the adolescent struggles - myself and my parents, me and the amazons - we are almost back to normal.

now just praying to stay that way. breathing and remembering that fear never helps.

as the sufi poet hafiz says:

Fear is the cheapest room in the house. I would like to see you living
In better conditions.

Tuesday, November 30, 2010

30 days of beaucell!

the end of 30 days of testing the beaucell skincare. given that my skin was cooked to a weird brown tone, it was sunken and sallow and my eyes tiny and swollen, i am totally impressed.

again, it's expensive. and i don't know what would happen if you used it every month.

if you want a topical product that will actually grow collagen and change the structure of your skin, this seems to be it.

here i am in july - rara videotaping my new hair - before i attempted anything on my face.

Monday, November 29, 2010

day 26, 27, 29

day 26
day 27
day 29
ok, it's almost over. sitting here with a gel-mask thing on my face for the LAST time.

i got home from dc and mary schook was hysterical - "oh my god, you look better than you did before you left!" (that was tuesday)

her friend ronnie kroell, who i haven't seen since i emerged from chemo in march, said, "you look BEAUTIFUL!"

i thought i looked great (and so did all kinds of random guys on the street, which is pretty thrilling on its own) but my mum didn't notice at all. 
i had to say, "doesn't my skin look good?" 

she said, "it always looks good. your skin has looked good since you were a teenager and i made you drink lots and lots of water." needless to say, she didn't notice that i lost my nosepin in the swimming pool either. what i notice is the big dark circles under my eyes have faded, the hollows in my cheeks and forehead have filled in. last check, the sun damage was greatly reversed, the circulation was improved all over my face. my upper lip pulled back up.

mary thinks i've taken 10 years off my face.

as i am typing, zarina and rara just came over and stared at me and said, "your skin is so oily!" (just slathered on the night cream and eye cream. i swear, this product works but it IS high maintenance. thank god i live with three teenaged girls and not a man because he would walk out the door - i would).

tomorrow is day 30. the moment (or photograph) of truth.

also day 29, i still have enough product to probably last me another 2 to 3 weeks, so it's less expensive than $2,000 a month.

if i had the money and the time to do this to my face forever, i probably would. mary's going to keep testing my face to see if the effects last over six months.

in the meantime, back to gossip girl and being low-maintenance, except for $1,500 a month worth of vitamins and supplements and psychic healing.

beaucell: to buy it & try it yourself on ms apothecary

Saturday, November 20, 2010

day 18

what i notice is that my skin is getting brighter - less of the darkened, sort of "cooked" way it looked post-chemo. the brown spots are fading away and my jowls are less jowly.

my hair is just as mad curly as ever and it doesn't curl in the way i want it to. sadly. it is not keeping up with my improving face.

what's silly about this part of the experiment is that the photobooth images are so bad that you can't really tell the difference. i will have to ask sasha, my genius photographer, to photograph me properly.

after the three-hour harry potter movie, the minivan battery died last night, it took about an hour for AAA to get there and it was freezing cold and 11:30. by the time i dropped rara's friend sarah back off on sutton place, checked out the preparations for the MS Apothecary event tomorrow, and massaged all the products into my face, it was 2:15am.

and then the next you know, i was wide awake at 7am in a panic thinking about all my unpaid bills. then i tried to be all metaphysical about it. i tried to separate from the concerns of the material world and i closed my eyes. i decided to do that sufi thing of "dying before you die."

so i lay there and meditated on making all the material things unimportant. i thought about how, if i was dying, all the struggles and pleasures of life would seem so brief and ethereal. i imagined myself sinking into darkness.

then i thought about rara, lying beside me, and suddenly i panicked. i had so many things i needed to tell her. and the darkness seemed so scary and i had no idea where i would be if i ended up in that cave where i couldn't talk to anyone.

i freaked myself out so well that i came up breathless and choking - as if i had almost suffocated - i had to kiss rara ten times and inhale and exhale so deeply to remind myself that i was still on this plane.

god knows i am still very superficial.

Friday, November 19, 2010

day 17 - you looked fantastic!

 left side


so i got that text message from my friend tony today. i'd dragged the amazons to see him in macbeth and we were all a bit tired still from the eid festivities and my mum and dad visiting the previous few days. so i zipped myself into my standby herve leger skirt that is so stretchy, it fits immediately post-chemo and now that i am 12 pounds heavier, too.

i texted back, "not fishing for compliments but what looks fantastic?"

he texted, "hair looked nice, well-dressed, nice make-up and earrings."

since the extent of my make-up is kajal (which i put on once every few days) and blush (which i put on after the pool in the morning) and the only thing i was wearing which he hadn't seen before were my grandmother's earrings, my reaction to his enthusiastic compliment (and he doesn't give lots of compliments either) was:


so the cream is working.

i walked in on mary schook who is madly preparing the shop to be the msapothecary winter wonderland holiday destination and she said, "oh my gosh, your cheeks are higher!"

the current consensus: the beaucell cream has - in 16 days - taken about five years off my face.

again, it costs $2,000 and is only available in korea, japan and, possibly, at mary schook's shop (if it keeps working).

in case you couldn't remember what my face looked like in april (2 months after the end of chemotherapy) - here's my college trip with sasha and aaron up to syracuse university. sasha filmed me sitting on the shore of the river.

what's tragic is that i thought i looked GOOD. phew. i must have looked really really bad during chemo. i remember reading some kind of statistic when i was working on anti-ageing skincare for loreal. about 75% of women don't realize how much they are ageing and how much their faces have changed.

i do know that i don't look in the mirror often - and when i do, i am so surprised at how different i look that how i feel (like 10 times bigger, taller) that i rarely get past that to notice the details - like the little wrinkles around my eyes or my sagging jowly chin - until i see a photograph or a video.

those have to be pointed out to me by my daughters.

also, i am so thin and pale in the video that i am amazed i thought i could jump in the car and drive 6 hours back and forth to show sasha colleges. no wonder people were alarmed!

anyway, if you have $2,000 to spend on face cream - i should add that this is an ENTIRE kit: day cream, toner, eye cream, night cream, face masks, so you needn't have anything else and the texture and scent (very very mild) is really nice - this DOES seem to make a difference.

Thursday, November 18, 2010

two weeks and 1 day

day 8

day 10

day 12
day 16

first off, please ignore the increasingly large and bizarre hair. at least, i can now push it back successfully with a hairband from duane-reade - but the point is my face and BEAUCELL - the $2,000 face care set.

here's what mary says (or the camera that takes pictures beneath the skin's surface) - the sun damage has been visibly reduced on my forehead and cheeks and the circulation has improved around my lower face face (chin, lips). the collagen has increased from 53% in my forehead to 78%.

i went to a party last night and EVERYONE kept saying, "oh i can't believe you have teenagers, you look like a teenager yourself." (that said, it was a lovely party given by my mum's very close friend so the majority of the guests were old enough to be my mum or dad - however, one young woman who is launching her own bodycare line did say, "i can't believe you had kids and cancer and everything, and you look so great!"

i noticed a freshness to my skin but not a majorly obvious change. my nasal-labio folds are still there, though slightly lessened, and i still get tiny lines around my lips (though fewer).

that said, a single $1,000 treatment at mary schook's space gives me skin like a baby (i am not kidding, my brother said he felt like i was going back in time - and that was when i HAD cancer and losing weight like crazy but was as yet undiagnosed).

so i expected miracles.

according ms schook, who spends all her time looking at peope's faces, this is an unprecedented effect from a purely topical product for home use.

i don't know. for $2,000 - a 25% increase in collagen isn't sufficient. it now makes me think differently about skincare ads which talk about increasing collagen or firmness in small percentages. unless you are obsessive with a magnifying mirror, you won't really really notice. you might just be happy and rosy.

i missed the chance to take pictures for the past few days since my mum and dad were in town and the nieces and nephews were around and i spent enough time locked in the bathroom with the toner, ionizer, ampoule, gel, cream, etc that i couldn't add more time dragging around my computer and secretly taking pictures of myself (they think i'm out of my mind enough as it is).

plus, there were only two bathrooms shared amongst 3 adults, 3 teenaged girls and 2 smaller kids (part of the time) so i couldn't justify the extra hogging and i was too ashamed to do it in plain view.

i am halfway through the treatment. i've started using a heavier dose of the ampoule and massaging my skin more with the ridiculous little ionizer (which is just a stand in for a good facial massage to get the blood flowing, i think).

more to come!

Sunday, November 7, 2010

spacey sunday

ok, it's late in the day and i'm in the wrong place. my skincare routine was somewhat interrupted by an incredibly restful day.

the amazons spent the night with james (yes! my first minor-free night in months!) so of course i was out late last night and exhausted all day today. but the wonderful thing about it was being able to go back to bed at about noon and sleeping til 4. despite the construction on the building next door, i slept mostly peacefully.

that said, the amazons all returned at 4pm and leapt on top of me. thrilled to see them but somewhat envious as their bedrooms and kitchen space in james' new house - as viewed on sasha's iphone - look bigger than our entire apartment. 

however, given my strange sleep schedule, I only managed to apply my day products midday. i am just about to go to bed now - i LOVE daylight savings but i miss the mat, i can't sleep properly without it.

i will apply the ampule (refrigerated stem cells) and the gel and night cream and eyecream just now.

darn, doorbell. because our buzzer is separate from all the rest, the delivery guys always ring us and i am always opening the door and telling them to go back outside and ring the right one. thai restaurant guy is actually from nepal and gave me a brochure about visiting katmandu.

will have to ponder the universal message of that.

Saturday, November 6, 2010

day 4

here i am yesterday (day 3) - though i only remembered to take the picture in the afternoon when the light was totally different.

so here i am first thing in the morning. see all those wrinkles around my eyes? also, one eye is a little puffy - maybe a slight allergy to the eye cream? i have to be careful not to get it into my eyes. it seems that, for the greatest bang for your buck, the face mask makes all the difference. also, cold damp weather is great for your skin.

here i am this afternoon. post-shower, product and a little make-up (for me, that means some blush and kajal). honestly, i am not seeing a huge difference. also, the battery-operated device no longer turns on by pressing the button. i have to pull the battery door open and then it runs for a little while and eventually turns off. also, on a dry day, the two day products - the gel and the emulsion - seem to dry up very quickly and i find myself wanting more moisturizer.

ok, i will have to wait until i see mary to hear her thoughts because i am not seeing a huge difference.

and actually, it may be day 5 now. wait, i started on tuesday. no it's 4, i guess.

i am withholding judgement just now.

Thursday, November 4, 2010

day 2.5

bad hair day but good skin day. not sure one can really tell the difference because the lighting's all gray and sad and rainy.

went swimming today against my better instincts, nothing like a good dose of chlorine to kill everything. but i asked mary and she said, "you shouldn't have to change your life for a skincare product to work." so i didn't.

but as the duchess of windsor says, you have to choose which side you want to focus on. today, i gave in to my bottom.

my second problem with the skincare regimen - if you have to use it all the time, they should have little mini-vials for travel. i got out of the pool and used my sustainable youth products. then ran an errand. came home at 12 and used the toner, the gel and the emulsion. so the day products won't go into effect until half the day is over.

even rara and sasha seemed to notice the difference. my brother walked in and i asked him how my skin looked. he said, "you look younger than me!" (but he's been well-trained by my mum).

ok back to work - am on deadline.

Wednesday, November 3, 2010

testing, testing

i have been given the quite wonderful job of guinea pig for my friend mary schook (beauty engineer extraordinaire)

she literally knows EVERYTHING about beauty and aging (follow her on twitter @beauty212 ).

i am testing one of the most expensive anti-aging creams in the world by a korean company called beaucell.

it costs $2,000.00 for a one-month supply and comes in this very sleek, futuristic packaging, lying on a bed of silvery satin.

its claim to fame - medical-grade human stem cells.

the complicated process involves a serum that must be refrigerated upon opening and applied to the skin once a night using a small battery-operated electrical device that helps it penetrate the skin better. then there's a gel, then a mask (pictured above), then a night cream and an eye cream!

during the day, there's a toner, another gel and an essence.

the question is - 1. can a topical product really make a difference? (i have never had botox, collagen, silicone or any other injectable nor any anti-aging cosmetic surgical procedures) 2. for an advertising person like myself - in this economy, will people buy it?

in my mind, the first problem is that there are no real instructions. there's a very beautiful silver but totally vague brochure. everything on the package is in korean except for a stick-on label that says, in english, made in korea. (um, yes).

i like instruction sheets myself. especially if they are well-written and give you a bit of story. it makes you feel looked after, and as if you are using something important, that someone has put a lot of thought into. i like the conversation with the company who's produced the product.

without a good instruction sheet, especially with all these silver packages, i feel like i am in limbo. i have to keep emailing mary with questions. this is not good for a $2,000.00 at home treatment.

rara is laughing at the mask as she watches tv.

for now, my face feels super-moisturized but that's it. (mary says i look brighter, but that might be the glare of the light in the grease. the night cream is very rich.)

supposedly, this should work no matter what the chemo has done to my skin. once a week, i'll go to mary's for a picture that shows the thickening of the collagen and the reduction (i hope) of the sun damage (the chemo drugs made my skin overly sensitive to the sun this summer).

i'll put up a picture every day...

this is me, this afternoon. mary tested it last night.

Sunday, October 10, 2010

mothers with children

i had a dream last night that james decided to move to california and take the amazons with him.

i just stood there, baffled and silenced by the audacity, as i am so often. even in dreams, i never have a clever, snappy answer til days later. or for someone else's situation.

in my dream, i wondered what i should do with all the bunny plates. the beige royal doulton bunny plates that the girls inherited from me and my brother, that are, in reality, now packed up in storage. i remember looking at sasha's hard and defiant face as she said, "i'm going," with such finality that it was done already.

i was wondering what i would do with the life i had created that was designed to house and shelter three children (because in my dream, they were children).

it made me realize that as mothers, we are constantly defined by our children. in my dream, i felt i was ceasing to exist without them.

17 years' ago, when i had just returned to new york with a 6 month-old sasha, i was working at calvin klein. i was trying to find a way to house, feed and look after a baby on my own. a young colleague of mine said, "think about how hard it is for someone like ameena, a single mother with children."

i laughed, "how could you be a single mother WITHOUT children?"

when your kids are little, they don't exist without you. they are always touching you, they're attached to your breast, your hand, hanging on your leg. they are kissing you, hugging you, pulling your hair, grabbing your sleeve or your arm, interrupting you.

my biggest fantasies were of just being alone. once after sasha's first sleep-over party (she was six, thus a night of severe sleep deprivation and making pancakes in haze). i left the girls with james and went to stay in a nearby hotel. i took the cheapest room available. i said to the clerk, "i don't care if it's a broom closet with a camp bed, just so long as there are no small children in it." in the movie "date night," the most perceptive mum moment was when steve carrell (dad) asked tina fey (mum) about her weirdest fantasy. and she said, "just walking out of here, walking away and leaving everything. and having some soup and a grilled cheese sandwich without anyone touching it."

17 years' ago, i asked my boss at the time - he had young children - how he managed to juggle everything and be in the office from 9 am til 9pm. he laughed at me. "i have a wife," he said.

oh, the mothers.

when i woke up this morning, i lay in bed thinking of the bunny plates. that no one has used in years. no one fights over which plates they get any more.

15 years ago, when our kids were all in preschool, a friend (with twins the same age as sasha) asked the pediatrician what to do about her two year-olds getting into bed with her every night. he answered, "get a bigger bed. just enjoy it. because sooner or later, they won't want to come near you."

now that the amazons barely want to come near me, i long for the scent of baby skin pressed against mine and soft breath dampening my ear all night. i remember them sleeping wrapped around me like scarves. i remember nights with sasha curled up under my left arm, zarina sleeping on my stomach and rara held on my right. walking up stiff and still exhausted, stumbling towards the coffee grinder.

now that my attention is not what they most crave, i feel like a tent with the poles kicked out. i am shapeless and unwieldy. my shelter is no longer necessary. as a mother, i had always been intuitive. i knew when my kids were hungry or tired, when they needed discipline and when they need nurturing. i didn't need books or lectures, i did what was needed. they didn't question me and i didn't question my abilities.

as they emerge into adulthood, i am uncertain. they push the boundaries much further than i did in adolescence. their mother is not nearly as strict as mine was. all my theories about open communications, about understanding what they were going through, about being patient and allowing them to be their own people rather than part of my identity, have gone out the window. i wish i'd been more disciplined.

of course, it's hard to tell. in a poignant essay a man wrote about his pregnant teenaged daughter in the back of the sunday new york times magazine years ago, he said, "adolescence is a fever. you just have to wait for them to come through it." and then again, in the times in 2004, "adolescence is a fog, a kind of high fever. emotion swamps reason; rumination undermines introspection." it's like looking at a cake at the crucial moment of baking, there's no way to know if one's done it properly until it's fully baked. the proof is in the eating, as they say.

still, when i think about the round-the-clock, often back and soul-breaking work to keep their lives as happy and organized and uneventful as possible (as i could as a single mother and usually, the sole breadwinner), the time and effort seems to have evaporated. as the much-circulated email job description for a mother says, the return on the investment is startlingly ethereal. my family members point out my multitude of errors with lasting impact.

those bunny plates. they must have been a symbol to me. they reminded me of the best part of my own childhood. the beige background was worn and safe and gentle as a cup of milky tea with honey. the old-fashioned english nursery drawings transport me to the life i wanted for my kids. one where they felt protected and fed and loved and happy. one without conglomerate cartoon characters. nothing plastic or fake. (but i lie, we had the much-sought-after barbie plates, too.

i think about my own mother. how much more difficult when it must have seemed when you followed all the rules correctly. when one took the more traditional route and followed established wisdom, and still the children were wild cards.

no matter how hard you try to stay a separate entity from your children, to remind yourself that they are themselves and their choices are not a reflection on you; that you exist without each other; no matter how you try to remember that your role in their lives must be reduced and altered as they get older, it feels sudden and unexpected when it changes.

it's like when you buy the first pieces of baby gear. that baby bouncer feels so crucial, so indispensible and important to get right. you rearrange your living room to accomodate the battery-operated babyswing or the small, perfectly-proportioned table and chairs with a natural, non-toxic finish. it would be ridiculous now to tell anyone - any mother of a young child - that in 14 years or so, you, like the tiny chairs, will be almost irrelevant.

what seems so important will be a minor detail. prepare yourself.

because you can't.

14 or 15 years is such a long time. a long time to fill your house with rubber boots and bicycles and waterguns and freeze-pops and extra mittens. a long time to drive a minivan littered with wrappers and beach blankets.

14 years is not a blink,

it's almost a lifetime

until you're at the end of it.

isn't that like life?

Thursday, September 30, 2010

ameena & the amazons

it's funny how the things that throw you in life are never the big ones. those big historical events where you save the newspaper in a plastic bag (until you lose the bag in the piles of magazines and recycling)  don't really mean as much at breakfast. as thrilling as it was to have obama elected president, not much changed in the ensuing days or weeks - at least, not in my apartment. (rather, we had to move out. but that was the trajectory we were on anyway.)

september 11, 2001: even living through the chaos and the shock and the drama downtown, didn't rock our lives in the same way my extended family managed to do it. this september, i kept thinking about that article in the new york times back in december, 2001. "ameena is celebrating the holidays with a cast of thousands..." even when the air outside was still hazy with smoke, we were a happy, layered family and i used to congratulate myself for getting it right.

then all of a sudden, my life is a rollercoaster like the emotional lives of my three teenagers in an apartment with huge leaky skylights that's as up-and-down as my financial life, cancer and unpredictable exhusbands and nothing happens quite the way i imagined it.

occasionally, parents of younger children who are getting divorced ask me advice. i say the same thing now, "i have no idea." even two years' ago, i could have told you how to manage a blissful blended family. i could have told you how my exhusbands come to sunday dinner or stay at my parents' house for christmas, how we bake cakes and give them parties on their birthdays. i could have told you why we never needed to make strict rules about who goes to whose house when because we were loving and civilized.

because we were always more concerned about what was good for the amazons than anything else.

i would have told you that once you were in love with someone you always still cared about them and wished them the best, even though you didn't want to stay together.

a few years ago, i could have told you how to raise girls so they had high self-esteem and no body image problems. how to teach them it was better to be smart than pretty. how to teach your kids to make wise decisions in adolescence.

excuse me while i collapse in laughter. or is it tears?

then again, some days, maybe just for the day, everything comes together. and we are our happy tribe again, the amazons prancing through the wilds of new york city. maybe it's the perfect trip to target. or dinner at mr. chow's during restaurant week. 

other days, we are all still reeling. my answering machine is full of things i want to avoid and the newspapers are overflowing with rage and whooped-up rabble rousers. i feel myself and my beliefs slandered and libeled. i wonder if the anger - towards bankers, big business, immigrants, muslims, gay and lesbians, teachers, obama - roiling through this country will take us back to germany in 1920.

this morning, rain torrents threw themselves against the skylight (while i murmured prayers that they didn't break through). zarina yelled from downstairs, "mama, it's six o' clock!" (and went back to bed, i'm sorry to say) and i emerged from the beach resort of my dream life. i have the loveliest pillow.

after i sorted out the latest morning dramas and came close to feeding everyone breakfast, i stood perfectly still for a few seconds. i stood still and took it all in. the cool, smooth floor under my bare feet. the smell of the chocolate muffins in the air.  i looked at sasha's leather jacket thrown on the back of the blue sofa (that i bought because it floated on the carpet like the sea on a summer day) and rara's battered keds. my fingers were still sticky with the juice of the melon i cut into slices at six-thirty. i breathed and felt the air move slowly down through my sternum into my belly. the apartment was silent, except for the rain, gentler now, against the glass and the occasional clank of cars moving in the parking lot outside.

i remembered that wherever i was was temporary.

life, the big catastrophes and the small historical events, is moving so fast that there is barely a moment to think that we've got it all wrong. or all right.

we just have to stop and be happy to be here.

(in our case, in the urban jungle).

Sunday, September 5, 2010


I hate the end of summer. Even a horrid, tense, unpredictable one like the one that just ended. I love the heat and the lack of structure. I love summer food. The bright flavors that explode on your tongue. The lush, licentious bounty of fruits and vegetables warm and sticky with juice in the sun. I like seeing my wide-spread toes in a pair of sandals. It's late summer for the earth and late summer, or maybe even autumn, for me.

I’m addicted to a friend's online novel, the blackberry diet and talking to women friends who all seem to be in the same place. Wondering what love and sex means in your late thirties and forties and then your 50s and 60s, often with a kid or two, some half-grown, and perhaps some exhusbands or even current ones.

In America, love and sexuality are almost synonymous with adolescence - or very late adolescence, perhaps dragged out into your early twenties. A pretty woman is unconsciously sexual, it's all about youth, fragility and honesty. Sweetness.

An older woman reeks of seduction, premeditated manipulation. All the most evil things in American culture.

That's why, when you watch classic American movies, the bad guy is always the one who is too slick. He speaks too many languages, he knows how to dress, he’s suave, too sophisticated. He turns into American Psycho. In a love story, he always loses to the young, earnest guy. The simple, honest one who’s socially awkward but on the straight and narrow.

So who are our role models? We’re still sexual and physically active (not just gardening). We’re not ready to morph into the comfortable, sweater-wearing wives of 15 or 20 years. But we don’t want to be Mrs. Robinson either.

It feels like the only option to baggy sweaters is a fire-engine red lipstick and a tight décolleté.

In America, au naturel, we are no longer sweet. We are invisible. Dressed up, we are attractive but deadly. For an older woman, it seems like the only choice is self-consciousness. Careful grooming. Botox. Plastic surgery that leaves your face sharp as a mask and your breasts like torpedos.

I’m in love (but who knows what that means now?) with a 28 year-old. Does that mean I’m a cougar with fresh blood dripping from my lips?

One friend just wants a nice intellectual but can’t figure out how you meet them. Online dating seems cold and unseemly, the realm of college students, not writers. Another friend is pulling off her bra at Hogs and Heifers. Another is focusing all her attention on her kids. Not one of us really knows how to be sexy without being indecorous.

I love seeing young girls, all long-limbs and false bravado. I live with three, so I don’t wish I could go backwards. But I miss knowing which step to take. For the first time since I was 15, I feel ungainly and unsure of myself.

If we’re single, the romantic choices that become our station are divorced or widowed men in their mid to late 60s or even 70s in well-cut suits. Gently graying, cynical and world-weary. Emotionally, they proceed with caution rather than passion.

We need to reinvent ourselves.

I’d still like moments of innocence in my relationships. I like surprise and – I’m an American – I’m still attracted to honesty. The scent of clean skin. A just-washed t-shirt. A smile in the morning with no make-up. My women friends and I all want something simple and warm. We don't want danger or violence. We want earnestness. Passion.

Is that possible now? And if it is, where do you find it – so that it feels real, not botoxed or silicone or collagen-enhanced? How do you do it so it feels easy. So you can walk out holding hands and not feel like you are mutton dressed as lamb. Come on, baby boomers, give us a heads-up. Diane Keaton can’t be the best you have to offer. One of the few women writers who knows how to do it is Catherine Texier. Anyone else to give us a map?

It’s the end of summer and there’s always that sudden heatwave. The air gets thick and hot and you wonder if the calendar slipped backwards. I always liked the line in Madonna’s “Material Girl,” “experience has made me rich and now they all want me…”

Thursday, July 15, 2010

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.

Tuesday, July 13, 2010

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.

Thursday, July 8, 2010

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)

Tuesday, July 6, 2010

RIP Giovanni Russo

Obit: Giovanni Russo, 45 - Media News -
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 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?

Monday, July 5, 2010

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.

Tuesday, May 4, 2010

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.

Friday, April 30, 2010

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.

Tuesday, April 20, 2010

cloak of invisiblity

when i was in college i had a friend in dance class called barbara.

she was absolutely beautiful in the classical sense - a perfectly symmetrical face, chiseled cheekbones.

she was 5'7" and had the most incredible body. she had been a rockette in the 60s.

she was used to a degree of attention when she walked down the street.

i was 22 and she was 56 so she was the first one to tell me about this phenomenon.

she said, "it was so strange when it happened. i'd be looking for something in a shop and no one would come over - unless i went to find help. all of a sudden, people didn't 'see' me.

or my car broke down on route one. i got out of the car and people didn't stop.

i was so used to people going out of their way to help me. treating me especially kindly.

and then i became invisible."

in barbara's case, in the beginning, it was liberating. she was so beautiful that she found all the attention tiring. she liked getting to feel like "everyone else" for a while. it was almost like being another man.

but it got old.

like her.

women of a certain age disappear. no matter how beautiful they are, they stand impatiently in the line at starbucks while the barista flirts with the 22 year-old and messes up their drink order. no longer useful from a reproductive standpoint, they become scenery. a backdrop for something else. are we still so driven by biology?

for the past few months, i've been one of those people one doesn't see. partly because i'd shrunk - literally. partly because my tiny form in the enormous winter clothes i was forced to wear (chemo made me supersensitive to cold) ate me up. partly, because my cheeks were sunken in and without eyelashes, hair and brows, my face lacked punctuation.

partly because i felt like an alien so i slunk around corners - i really didn't WANT to be seen. it was embarrassing to have kids stare at me. or to have to explain. the number of neighborhood kids i've said "hi" to who've said, "i don't know who you are..."

then there are all the people who avoid you because you look sick. cancer is the modern-day bubonic plague. who knows? it might be catching. anyway, it can be so depressing. when you look like death, who wants to hang out with you?

so here's how i know i'm getting well.

people smile at me on the street.

i got out of an elevator today and the guy getting in flirted with me.

i went into a shop and the salespeople were all over me, "LOVE the haircut!"

yes, i am superficial. i gulped down all the smiles like a person dying of thirst.

my cloak of invisibility dropped on the floor when my eyelashes came back. i suppose i still have it to look forward to in a couple of years, but i am relieved to be HERE for now.

Monday, April 19, 2010

beauty and all its forms

back at work and thinking about beauty and what it is. here i am with my partner diana on my almost last day on this project that i was sent home from because beauty is not what it seems.

so funny to work in the "beauty" industry - which means perfume, make-up, skincare - as opposed to kindness, grace, art, music, poetry or creating pleasant surroundings.

because i spent the weekend running around with the amazons, helping rara do a bake sale for st. jude's hospital, driving them to target, cooking, feeding, washing dishes and putting things away; my penance is that i have to throw together a script today.

and it's so funny but beauty is never what you think it is. you can define it - sometimes it's love, the tiny things someone does for you when they love you, bringing you little presents, helping you or paying attention to when you need help. sometimes it's lust, the way that longing can make someone's skin gleam, make their touch electric.

sometimes, it's something that feels so rare and magic - like standing in the center of the lilac bushes in the brooklyn botanical garden on a perfect day in may.

and it's so different than pretty. it's majestic. it's important.

for me, it can be watching the amazons eat breakfast. watching the way they tease and talk to each other or their serious faces when they are finishing up homework. i like it when they sing along with their favorite new song. i am always amazed at the women they've become.

strangely, so little of the beauty in the world has anything to do with the beauty industry.

Monday, March 29, 2010

lucky lucky lucky

while i was lying in bed with a needle in my arm feeling the chemo medicine burning into my shoulders and trying to engage the nurse in pleasant conversation, i kept wishing for one thing.

i just wanted my life back.

i must have found a penny heads-up on the floor somewhere because somehow, suddenly, everything is falling back into place.

crazy, mad busy with work; the amazons happy and obedient; toby coming and going happily between our house and eve's, my muscles responding to the exercise; my eyelashes coming in like a fringe of grass. i'm almost pretty.

hoping that next month, for the first time in ages, all the bills will be paid on time and i'll make a bigger dent in my debt.

perhaps it's time to fall in love again...

oh - and it's SPRING.

i am beginning to believe i am quite possibly the luckiest person on the planet. not sure anyone getting an academy award or winning the lottery ever felt better.

thank you, God, LOVE, my family, my friends, the UNIVERSE.

i'm a human so the wants will probably set in again soon enough, but for now, i am truly grateful.

Sunday, March 28, 2010

two weeks of work and 14 laps

two weeks in a very fast-paced, deadline-packed office and i feel the same as i do in the pool.

i am a tiny piece of string on the surface of the water. no power in my arms and legs. i kick and move my arms but they barely propel me forwards. all of a sudden, everything cramps up in my shoulders and i am convinced i'll be paralyzed and start sinking like a stone but instead, i keep moving, keep working through it, try and concentrate on my legs so they can take some pressure off my arms, thinking about flexing my stomach and hip muscles so i move from my core rather than my upper body. all of a sudden, i've almost done half-a-mile.

but it's not easy.

some days at work i still think i am so exhausted i will not survive another minute, i have got to go home to bed, i cannot do it without caffeine. my whole body hurts, my skull cramps from the cold office air, my feet and ankles throb from walking on pavement and i just keep drinking water and keep going.

in the meantime, the drama from friends and family members keeps spinning around me. i come home and just want to collapse in bed, lie silently in total darkness and listen only to my breathing. but instead, i deal with listen to people's frustration and complaints and think that my body will not survive another onslaught on my psyche. my stomach burns.

and somehow, everything gets done and i live through it.

it's a grueling marathon, this life.

but it's getting better all the time...

Thursday, March 11, 2010

phase three: time to get moving

i feel like i'm wearing jet-shoes and flying through the air.

on monday, i went to see a doctor called sharon lewin up at columbia presbyterian. before we made the appointment, we had a great conversation about how i wanted to handle my care moving forwards. i really wanted a holistic, nontoxic therapy. i took the long subway ride from the bottom of the island of manhattan up to the top, thinking she was going to talk to me about alternative therapies, about diet, exercise and the effects of specific supplements.

after a 3-hour wait in a standard hospital room, she did the usual blood work, the physical, the vitals and then called me into her office. she said, "you look so much better than i thought you would. you really have made a great recovery. all those supplements and everything have really helped."

me: "thank you. i FEEL great."

and then she said, "so how can i convince you to do more chemotherapy?"

me: "um... if someone else does it for me."

sharon: "well, would you consider a hysterectomy?"

me: "but a hysterectomy doesn't guarantee the cancer won't come back."

sharon: "that's true because the cancer could be in your bloodstream already."

me: "so what's the point?"

sharon: "according to the standard protocol, if you had a hysterectomy, you'd be considered 'cured.'"

i finished by explaining to her that i really didn't need any more medical intervention but i appreciated her interest. she promised to get in touch with colleagues at other institutions to see what else might be out there. "the prognosis is good and the future is promising, but are you sure?"

yesterday morning, my doctor from msk called to suggest i see doctors in boston and london. she still wants to give me more drugs herself. what about sharon lewin?, i asked her. "oh, she trained with me," said carol. "you won't hear anything different than what i say."

in the afternoon, i was back up at memorial sloan kettering seeing a cancer-related psychologist to discuss how the cancer had affected my life and again, in the medical machinery, the sharp scent of disinfectant and medicine all around me.

back to the limbo of hesitancy, uncertainty and underlying fear.

today, i had a series of blood tests with the endocrinologist at the acupuncturist's office. ming jin also works at msk and has success treating cancer with chinese medicine. the results: my red and white blood cells are back to normal, i am only very slightly anemic, my blood pressure is back up to human speed and i've gained two pounds!

my post-chemo routine - acupuncture, fistfuls of vitamins (including resveratrol, tumeric, quercetin, shitake and reishi mushrooms, rosemary, rice bran, calendula, biotin, wheat embryo, vitamin D3 and omega-3), healing from penney leyshon, smoothies with ave, polymva and 3 packages of immunocal daily, all organic fruits and vegetables, no dairy, no wheat, miniscule amounts of meat and fish - seems to have done the trick.

but what was really amazing was how the news made me feel.

i'd just stepped off the platform and on to the train.

somehow being ill was like being caught in freeze tag. i was turned to stone.

spent 75% of my time sitting around in my pajamas researching the cancer, the drugs, the alternative therapies online. in between taking showers and getting dressed, i was chasing doctors, homeopaths, nutritionists, acupuncturists. i called friends and discussed my treatments while i made fresh vegetable juices, roasted cabbage and rutabagas, vegetable and fish soups. i wandered around the apartment in leggings and tunics because they were the easiest things to change in and out of in doctors' offices.

my main project was my body.

i couldn't seem to concentrate on much else.

but as i walked away from the endocrinologist's office, i was thinking about calling the plumber.

i am practically a normal functioning human!

i can go swimming without fear of catching a new virus, take pilates without feeling squeamish about the person on the mat before me, i can hug and kiss people without secretly wondering if they've got sore throats or colds.

i can think about work, bills, fixing the leaky washing machine, the stove that's hard to light, putting treads on the stairs.

my brain has switched gears.

how chronically-ill people get anything accomplished is incredible. and as the metaphysical oncologist said, "the right words from someone in a white coat can actually cause physical changes."

i am so lucky for having made it through the worst of the cancer at an accelerated pace.

still healing but for today, i feel SO much better.

thank you for all your help, my long-suffering supporters.

Tuesday, March 9, 2010

thanks a lot

better by the moment, turning back into a creature that resembles a human more than a star trek character. a soft fuzz all over my head and my eyes are getting clearer.

of course, the first hairs that return - seemingly hardier than before - are on my mustache, my legs and those horrid tiny ones BELOW my eyebrows, the ones you have to have waxed away.

my eyebrows themselves look like someone drew them on with a pencil and then erased them badly. they are weird little smudges. and my eyelashes, despite my using neulash assiduously, are thin pale rabbit lashes. you can only see them if you look really really closely in the magnifying mirror.

oh and while i am happily gaining weight, lack of exercise and chemo-induced ping-ponging hormones means i am gaining it in all the wrong places.

it's so unfair.

Monday, March 1, 2010

cancer phase two

went to see my very calm and metaphysical oncologist. as is his style, he had me listen to a very soothing chant, "om nama narayani..." and he asked me when i was going to write about my cancer treatments. i talked about my frustration with my doctor at memorial sloan kettering, i told him about re-thinking chemotherapy. he prescribed MORE supplements ($185.00) to help with the nerve damage and suggested twice-weekly intravenous glutathione (about $500 per dose) to get my immune system back to normal.

it seems that my immune system is so damaged by the chemotherapy that my current condition would be analogous to someone who is HIV+ which he asked me if i was. fortunately, unless i got it from the blood transfusions, i'm not.

i told him my theory (and practice), "if i believe i am well, i will be."

he answered: "most spiritual teachers as well as psychologists would agree with you. your mind can change your body."

so i left, scheduled one appointment for glutathione (all i could dream of affording), bought more supplements - i am now gulping down multi-colored capsules like jellybeans - and went to meet a friend (who is surfing in costa rica, skiing in argentina and on her way to australia next) to absorb some of her radiating positivity.

when i walked back in the door of my apartment, my phone rang. it was the metaphysical oncologist's secretary. she said that my memorial sloan kettering oncologist called him. he can no longer treat me. he told his secretary to tell me that he misunderstood about the chemotherapy. he can't endorse something that deviates from the standard procedure. however, he recommends i see yet another oncologist, this one at columbia presbyterian up at 165th st.

i am totally confused. the metaphysical oncologist has just sold me upstream. i ask the secretary again, "are you sure? we had a very long conversation about it. how can there be a 'misunderstanding'?" is he just scared about malpractice suits? is it insurance?

phase two in cancer treatments is discovering that the doctors are more scared than you are. scared of getting blamed. scared of insurance companies. scared of malpractice or the embarassment of a patient dying unexpectedly. scared of losing stature or patients if the word gets out.

i pointed out to the chemo doctors that my cancer has a 95% cure rate but only 70% of people survive chemotherapy. they say, "I know, we've made such strides!"


that is a C, as one of my friends pointed out.

at the moment, the things that seem to make me feel best are acupuncture, penney leyshon, pilates and cutting sugar and animal products out of my diet.

though i fell off the wagon today with a decaf cappuccino (2 sugars) basking in the spring sunlight with my neighbor purvi and KNOWING that i am well.

(it's possible the vitamins work, too, but i am taking so many i can't tell which is doing what. as the chemo leaves my body, i will let you know more.)

Friday, February 26, 2010

ultrasound & blood tests

trudged up to memorial sloan kettering for an ultrasound at 9am today to confirm that my body is clear of cancer.

despite the blizzard, there were a fair number of people on the street and even on the subway.

the outpatient part of the hospital on 53rd and lexington didn't seem to be affected at all. there were tons of patients milling about and cars dropping people off and picking them up outside.

i have to say, just the slightest whiff of disinfectant, rubbing alcohol, latex gloves - and i instantly feel sick to my stomach - i feel like sneaking out the door quickly before anyone notices.

then, of course, like all those stupid medical procedures, the ultrasound technician, clicks and sighs and hums, but never tells you anything about what she sees or what she's looking at. when i ask her, she says, "i can't tell you anything, you'll have to wait til the doctor interprets your images."

i was briefly panicked. i don't have a follow-up appointment with my doctor til april. did that mean i wouldn't know til then? it took me three days just to get the results of my blood marker test because the doctor didn't call me back.

it turns out it's just the radiologist who interprets everything twenty minutes later (while you are lying there in agony wondering what it all really means).

YES! all clear. my body is a bit beat-up and raw from the tumor and the chemo but apart from that, everything is good! my blood marker (hcg) is 2.7 - normal!

off to drag the amazons to jumma to say, thank you.

Wednesday, February 24, 2010

on being disabled

you think it would be so easy to imagine what it would be like to be disabled. but somehow, when you're at the dank bottom of a long flight of subway stairs and you're exhausted from getting yourself there, it feels insurmountable just looking at it. you can't REALLY empathize when you're late and bounding up to the top.

imagine wandering through a subway station, dragging your tired and increasingly heavy bag of bones, looking for the handicapped elevator. or trying to make it through the station by listening to the tapping of your cane.

even harder to imagine - at least for me - was being mentally disabled.

i'm used to my brain working fast, quick answers, quick leaps across logical chasms.

now someone tells me something and i stare blankly.

i went to my friend andrea's building last week. there was a small sign on the iron door: "if no doorman is available, please press bell for elevator operator." underneath was a small arrow pointing to the right.

i stared at the door.

it was locked.

i looked inside, there was no one in the lobby.

"ah!" i thought, feeling slightly relieved as i remembered the sign, "press bell!" but then i stood at the door wondering where the bell could be. i had to look back at the sign and look at the arrow.

while i did find the bell, it took me five or six minutes. something that might have taken me less than minute previously.

today, as i got to the head of the line in the crowded century 21 department store, a man stepped in front of me and threw his purchases on the counter. the woman at the register gave him a stop-right-there-look, "there is a LINE." then she looked at me, "you just stood there! why didn't you tell him, it's MY TURN!"

the reason i just stood there is that i got confused. someone walked in front of me and all of a sudden, i thought i was in the wrong place. the man seemed to materialize in front of me, i wasn't aware enough to see where he came from.

yesterday, i got off the subway and stood staring blankly. i knew where i was. rather, i had been there before. but i had no idea how where i was related to where i needed to go.

it was simple, i had emerged from a different exit in the subway station. but just taking a different route than my usual one erased my brain's RAM. i had no idea which way to go.

after 16 years living in nyc at a stretch.

and thoughts - oh, those delicious streams of ideas - they used to run through my head like moving sidewalks. i could get on and they'd lead me off through variegated landscapes, i could take trains of vaguely related trajectories without ever falling off.

now they are like clouds, blowing past so quickly i can barely make them out, disappearing like mist if i try to hold on to them.

what was i just saying?

what was i just thinking?

my favorite analogy is the main character in "flowers for algernon." charley, having gained consciousness, then slowly loses it, watching his ability to comprehend fade into the distance.

like charley, i remember that i used to know things. that i used to be able walk from the refrigerator to my laptop and remember what it was i needed to buy from now, i forgot the missing items i noted in vegetable drawer by the time i'm at the top shelf.

all of a sudden, i know what it's like to be mentally-handicapped. i know what it's like to be stupid. i've become one of those people who stands and stares. you know those people in nyc, they're the ones holding you up on the bus because they (like me) are looking at the change in their hands and they can't figure out how to turn what they have into bus fare.

i am one of those people standing on the sidewalk looking around me and tripping up everyone else as they hustle past. i am standing there, not even with an embarrassed smile, because i haven't yet realized that i am a public annoyance.

oh yes, that realization, that self-awareness comes later.

usually, too late to do anything to save myself from being a nuisance.

when the woman at the cash register rescued me and rang up my scarf and bag, i know what i should have said to her: "the reason i didn't say anything is because i am a little slow. i don't always get what's happening around me. it's like alzheimer's."

though, of course, i am too slow to have thought of this at the time. i only thought of it now.

not that i am complaining. i am lucky. my alzheimer's is passing. along with the sudden hot flashes. the night sweats. i have moments of great lucidity. and, for some reason, when everything is quiet and the amazons are finally settled into the homework, i can write.

i hope that i have learned some compassion for people who are not moving quite as quickly on the sidewalk.