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

video
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 freshdirect.com. 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.

Friday, February 19, 2010

eyelashes


not quite sure why it bothers me so much not to have eyelashes but there you are.

some women's femininity is tied to their bottoms or breasts, mine to my eyes, i guess.

think about it this way. when you draw a little cartoon picture on the bottom of your napkin or doodle it on your pad of paper in a business meeting when you are meant to be taking notes, if you want the little person to be a girl, how do you make her into one? draw eyelashes, of course. all of a sudden, she is feminized. it's like minnie mouse. it's her pumps and her eyelashes that separate her from mickey's asexuality.

my eyes are swollen and red, so bad in the morning that i look like an old turtle and the lashless rims just make it worse.

2 weeks and 3 days post-chemo - i am "feeling my oats" as they say about horses. i wake up energized and thrilled about the endless possibilities of what might comprise my waking hours. should i try swimming again? pilates? meet a friend for lunch? being alive and mobile is so fun!

i am so thrilled that i can read complex sentences again - yes, that means BOOKS! not just sidebars in magazines or paragraphs in "styles of the times." i can write sentences and dig up words and ideas that had seemed buried in the "chemo-fog" or "chemo-brain" forever. the my grocery list that used to evaporate from my mind as i walked from the refrigerator to the computer now stays put, albeit with a few losses.

still, i often become overambitious and end up collapsed in bed at 2 in the afternoon.
despite drinking kale, spinach, carrot and cucumber juice religiously, no caffeine (though i'd love it for that afternoon slump), eating cruciferous vegetables rather than cake and tons of supplements, i have to be patient.

but like a gift, my eyelashes seem to be coming back! (the eyebrows are still thinnning but who cares, it's nice to look permanently surprised. additionally, i could save on eyebrow lift surgery).

there are SIX dark lashes now - though it requires confirmation in the 5X magnifying mirror attached to my bathroom mirror with a suction cup - and it cheers me up.

there is an end in sight.

Thursday, February 18, 2010

peaks and valleys

i am at a low point. maybe it's all the running around yesterday.

maybe it's penney clearing the toxins out.

whatever, i am so tired today i can barely lift a spoon to my mouth (and i just discovered, while i was out, that i weigh exactly 100 lbs - grr - maybe it's bad scale because i thought i was gaining weight).

had a brief acupuncture treatment at ming qi this morning. and a cup of miso soup and cucumber sushi.

but then i had to come home and lie down for a little while before i could get much done. and i didn't manage to wash any dishes or even make my own bed. it's so frustrating. i'd be really irritated except that i am just too tired. (oh and because penney just makes me take things all in my stride).

fortunately, my brain seems to be clearer than it has been in ages. i can read AND comprehend complex stuff on the first try.

and i can write.

just had a bit of dark chocolate and a cup of green tea to revive myself.

patience, ameena, patience.

still trying to learn that one.

Wednesday, February 17, 2010

magical mystery tour



everyone is back on track today. the amazons went to school (after a v small last-minute disaster during which james called to say that he couldn't get his car out and i took them instead, in my pajamas with sweatpants on top).

then i went to see penney leyshon.

she's been my lifesaver in this process - showing up miraculously in the emergency room and making the bleeding stop immediately, appearing at my apartment and making the pain dissipate with a touch of her hands, talking me through bouts of nausea and anxiety so bad they made me cry.

i'm not quite sure how she does what she does, but she does it.

i always tell people about the first time i went to see her. i was totally skeptical. and i felt like i'd handed over a pile of cash for nothing than a pseudo-massage.

then i left her apartment, walked down the dark stairs and opened the door into the radiant april sunshine. i emerged from the darkness and it felt like i was floating. it was as if i had just taken off my ice skates in the winter, my feet were weightless.

i felt calm and soothed of all anger, tension or anxiety.

it was like hours of meditation or a no-side-effects valium, everything made me laugh.

i'm not sure how it works, but it does.

will seeing penney keep the cancer away? no guarantees, but smiling more can only make things better.

penney leyshon

Monday, February 15, 2010

is that all they needed?

video
since i barely survived the last chemo treatment, the cancer is gone and my body is suddenly manifesting every single bad reaction possible to the toxins, i decided to stop it. let's see what my body can do - along with the addition of $800 worth of supplements from the metaphysical oncologist.

2 weeks post-chemo and i am amazed at how much better i feel. i get out of bed and walk around. i am laughing like crazy. my anxiety levels have dropped. i am only nauseated when i talk about the treatment.

for the year of the tiger, my out-of-control teenagers are purring around me like happy kittens, all smiling and cuddly. i tell zarina she can't go out, and she says, ok, i'll stay and help you with rara's sleepover. she washes dishes, she tells jokes, she apologizes.

i tell sasha that she needs to go out a bit less and start working on her homework. and she does. her curfew is 12:30pm and she comes home - breathless and racing down the hallway - at 12:27.

rara stops crying over every little thing - though she is still eating way too much sugar (she inherited my addiction) - and she isn't as clingy either.

i decide that when i'm with them, i need to stop taking phone calls or cutting our time short for other appointments or including other people.

it makes me realize how unfair it all is for mothers. i remember reading in Oprah once that for women, there is no such thing as the family/work balance -

rara needs help with her math

you see, as a mother, you need to be able to drop everything you're doing and focus on your kids. so you have to make a choice.

you can focus on your work and your career and you can shoot up the corporate ladder and be able to afford school tuition and trips abroad and afterschool classes and new clothes and the mortgage or rent for living in a safe and easily accessible neighborhood.

or

you can make homemade food and all eat meals together (whatever you can afford), you can make it to parent-teacher appointments and never have to cancel at the last minute for a sudden presentation or a new client. you can trudge along carrying your groceries home rather than having them delivered or taking a taxi (i remember doing that, with a baby strapped to my chest). you can pay attention to who your kids are talking to and where they are going afterschool and what they are wearing.

but in the back of your mind, you're still not more cheerful because you're stressing about your late rent and you're wondering how you can afford to get someone in to fix the stove or the broken stairs or the leaky washing machine.

or

if you're a single mother, you can hook up with a guy who is desperate to reinvent himself and you can coddle him and indulge his insecurities (another full time job) and then get him to pay your bills.

or

if you're married, you can hope that your husband is willing to swallow the resentment, emotional burden and physical exhaustion of being the sole breadwinner while it seems to him that you are having picnics in the playground. and in trade, you will generally cook and serve four meals a day (one dinner for the kids, one for the adults) during the week and six on the weekend (adult meals and kids' meals), as well as find his socks in the morning and entertain or indulge your in-laws in a big way.

unlike president obama, if you're a woman who drops everything to get to a recital or a birthday party, they mutter behind your back and you don't get asked to step up to the next job because you "can't get your priorities straight." i know it's a common complaint, but if you're a man, being an active parent is a sign of nobility. if you're a woman, it a weakness.

basically, for women - and for mothers in particular - there is NO balance. you choose one or the other (maybe you shift back and forth, like i do) but one or the other suffers.

currently, for me, the choice was focusing on ME, getting well or focusing on the amazons and letting them drink in the liquid of my attention so they could grow properly again.

the amazons immediately responded.

it always reminds of that line in the air safety presentations and cards that you ignore as the plane is preparing for take-off. "parents: put on your OWN oxygen mask first and then help your children."

it's so simple and so NOT easy.

Sunday, February 7, 2010

oh and one more thing

since every couple of days, my mum calls to tell me who else told her i should get a hysterectomy.

here's something from the bbc:

wombs removed unnecessarily

thank you, anita.

nausea

video

it's overwhelming. i look at my sweatshirt that i wear in hospital and i feel sick. i smell vegetables and my stomach turns over. i talk about my next doctor's appointment and i can barely speak.

after changing my diet and eating all organic, tons of fresh vegetables, no sugar, no caffeine, no dairy, no animal products, no wheat - i now eat anything that doesn't make me gag. sometimes that includes sugar. generally, it's toast.

it's funny because upset stomach was never an issue for me. a bit in early pregnancy but i was never a throwing-up person. i rarely get food poisoning or stomach flu. i used to joke that i could eat stones with lemon and chilies on them in the nightmarket in bangkok and feel perfectly fine.

now nausea is my constant companion.

it fogs my vision, muffles my hearing. makes my neck and shoulders ache from the tension of trying to hold it together.

i can't even watch that video of my last trip to hospital. as i was downloading it, i noticed that my eyes are swollen to two different sizes, my skin is dry and cracking on my body and i have a rash on my cheeks.

last week, i had shooting pains in my feet and fingers. it's changed to lack of sensation in my fingertips and toes. it's a drag because i drop things and burn my fingers when i am cooking dinner.

illness is a funny thing. you know how old people can be so grouchy? i am now one of those bad-tempered, excessively sensitive (to noise and movement) and hypercautious sick people. i panic when rara leaves the house without a hat on a cold day. i hyperventilate if sasha or zarina are out and they don't text me back within a few minutes. if someone puts glass too near the edge of the table, i have to grab it.

i imagine the worst in every situation.

along with the nausea, it feels like everything is on a downhill rollercoaster going way too fast.

yesterday, i went to watch rara in her school play. sixty kids singing onstage and i could barely hear it, i couldn't see properly and my mouth tasted like sour metal.

i ended up sitting in the hallway sobbing my head off and freaking out kids who were hurrying out for costume changes.

last week, my doctor said, "you're cured! the cancer's gone! now it's just four more weeks of this..."

i thought, "if it's even ONE more night like last night, i'd rather just risk the cancer."

better stop thinking about it. it's making me sick.

Wednesday, February 3, 2010

why can i never post links

on my blog?

here's what happens...

this is the only blog i can find about choriocarcinoma. the one in 40,000 women cancer that i have.

oh wait, shandana showed me how.

Tuesday, February 2, 2010

in the way life does

things suddenly tipped back to normal today.

so beautifully, deliciously ordinary.

sasha slept in late and then spent the morning with me at target as i bought (very ungreen) printed paper plates and napkins and cups for rara's birthday. i dropped her off at school and went to century 21. weaseled my way through the european bargain shopping hordes to buy rara a few surprise presents (she came with us on our first birthday shopping excursion and chose her own presents). by the way, marc jacobs brand for kids becomes quite reasonable here. $26 for a wooly black dress for an 11 year-old seems much closer to right than $146.

on the way home, i walked to the balloon shop and bought a dozen bright blue helium balloons and carried them home in a huge bouncing bouquet. this is most likely the last moment that rara will want balloons at her birthday and now that i have tasted the wrath of adolescence, i wanted to savor my last moments of childhood. i watched mothers with toddlers exploring toys and thought to myself, "oh gosh, you have no idea, do you?" it seems so easy to be a good parent when they are little and half the battle is getting them to say please and thank you and eat some vegetables.

i stood in the shop where i have bought balloons for all the girls' birthdays for the past 14 years. it's a place i used to have to push the stroller past faster because whoever was sitting in it, was always trying to grab one of the giant bobbling display balloons outside. when sasha was little, there wasn't quite as much licensing, so the balloons were big palm trees or gorillas or zebras but temptingly big enough to ride on. by the time it got to zarina, there was an elmo in the mix, but rara had sponge bob, dora and a whole host of inflatable nickleodeon characters in larger-than-life sizes.

the shop was just at the corner where we turned off west broadway on to duane street, where the preschool was. oh my god, preschool. when you worried about whether she might bite on a playdate or whether she'd actually get a playdate with the kid she wanted one with.

when i started buying balloons there, sasha was 2 and 1/2 and i was elephantine-pregnant with zarina and rara wasn't even a thought in anyone's mind.

this time, i was the only one in my pack of amazons who was giddy with excitement as the guy with the helium tank magically transformed each inky shred of nylon into a big sky blue bubble. i remembered all those frigid february birthdays (sasha is february 7), holding sasha's hand with one hand, pushing zarina's stroller with the other and trying to keep our huge multicolored grape vine of balloons from taking us all airborne in the icy winter wind.

i walked up west broadway, alternately exhilarated with the anticipation of mirad, nathalia and rara's pleasure and laughing like a four year-old at the vision of myself carrying an instant birthday party down the pavement on a dreary tuesday afternoon.

i came home and soraya and mirad and nathalia were there, finishing up homework and doing last-minute preparation. zarina and rara and sasha came home, one after the other, and dinner was eaten and candles blown out amidst the usual chaos of shouting children and crumpling wrapping paper. surprisingly, james made an appearance - he's been scarce since he started dating elizabeth - and everyone seemed happy to see him.

somehow, everything felt normal again. zarina apologized for being rude. sasha, almost 17, seemed to have come out the other end of the angry fever of adolescence. rara was all smiles (as usual) and mirad and nathalia were beautifully-behaved and no cake ended up in my bed or smashed into the sofa or the carpet. i forgot that i was bald and skinny and shouldn't even taste the cake or the lovely blue marzipan bird. i was again a glossy-skinned young mother surrounded by happy sugar-crazed children.

oh how wonderfully prosaic. how uneventfully every day. what a fabulously ordinary child's 11th birthday.

packing my bag for the hospital and my next dose of chemo tomorrow and buoyant with the hope that my life will be a smile like a party-sized bunch of balloons walking up the street again.

it's almost here.

Monday, February 1, 2010

adolescence on both ends

someone once told me, when my kids were little, "when they're in the terrible-twos, you have to nip that defiance and anger in the bud. because if you don't get it then, they'll give it to you way worse in adolescence."

and when my youngest daughter was born, my mother laughed and said to me, "you were such a bad daughter, god gave you THREE."

so on one side, i've got zarina screaming, throwing tantrums, lying and breaking rules (only to be comforted by her father who doesn't mind being yelled at - maybe it's a divorced-dad guilt-thing) and telling me how much she hates me and hates being around me and how stupid and pathetic i am.

and on the other side, i've got my mother using every extra second of her breath to try to convince me to have a hysterectomy, "just do it for me..." and in between to show me how the accumulation of all her advice would have kept me from getting cancer in the first place.

or so it seems. to me.

because as the chemotherapy shoots my hormones down to premenopausal, zarina's hormones are kicking in and we're both volatile candidates for spontaneous combustion.

she came from school and got angry that there wasn't a thermos for her to make tea for ballet. and i got so fed up that i went and got a blue-and-yellow-and-green pedicure.

as i get skinny, dryskinned and sexless, zarina gets spots, and shoots up and out in awkward ways like a young, clumsy horse. i need to remember that i am leaving the material world, a little at a time, as she is stepping into it.

i spent some time with a friend today and i spent most of our conversation being completely irritated with her. i think she was trying to say kind and soothing and reassuring things, but all i wanted was for her to agree with me. i was oversensitive and frustrated and tired.

zarina is hyper-sensitive and always tired because her body is moving so fast.

here's the other part of the terrible-twos' advice that i just learned. if you don't learn how to negotiate your relationship with your parents gracefully when you are an adolescent, if you don't successfully create a separate identity and clear boundaries, you will have to re-live your adolescence until you do.

so i need to stop blowing up and let zarina do her thing.

while i try to kindly explain to my mother that i know she loves me and she cares - and like everyone dealing with cancer, she's frightened - i am no longer 14.