amazons of nyc

why the c-word?

2012-01-17T14:02:00.000-08:00

i was at a holiday dinner party in the week between christmas and new year's eve. it was a sparkling mix of brilliant people. everyone was jolly and rosy-cheeked from the cold and the company.

i turned to say something to the woman beside me and blanked out her name. so i said, "oh my god, i'm so sorry, it must be chemo brain!"

the hostess was an old friend who i absolutely adore for her bluntness and strong nature. she was looking very chic in a sort of tropical 60s' way. she said to me, "ameena - no cancer! this is a party! nothing depressing!"

i started laughing. "cancer isn't depressing! well, it shouldn't be."

oh wait. let's be honest, it is totally depressing when you first find out you have it.

it's horrid to have chemo and radiation and surgery. it's like any other illness or obstacle in the road. but the fact that it's possible to overcome it, to deal with it with grace and LIVE with it, is a powerfully positive thing.

also, the fact that cancer is an epidemic - that almost everyone i've ever met has a close friend or family member who's had one kind of cancer or another - means that we need to talk about it. we have to. imagine being ashamed of having the flu?

we have to bring it out in the open (and also talk about all the reasons why we are poisoning our environment and making ourselves sick).

i have two friends who've died of cancer in the last year. they were both so discreet about their struggle that i didn't even know they were sick til i got the invitations to their memorials.

cancer cannot be voldemort (that villian in harry potter so evil he couldn't be named).

when i was having a chemo, a mom-friend of mine came over to visit with her daughter. she told me that in the late 60s, when her father got cancer, his friends just cut him off. for decades, they all used to have an annual summer barbeque together - maybe it was in the catskills, i can't remember - and when he got sick, they just didn't tell him or invite him.

she told me he was incredibly sad and hurt.

people were so scared of cancer that it was like the plague. they felt like it was contagious, that even acknowledging its existence, brought it closer.

in chinese medicine, they say that some kinds of cancer are the result of deep grief.

who knows if her father didn't die from a broken heart?

here's the most important thing i need to say:

cancer is not a death sentence.

it's really not. it's a chance to re-examine your life. it's an opportunity to decide what you really want.

it's a reason to put yourself first for a little while.

it's a moment to get way healthier than you've ever been before.

it's also a way out, if you need one.

but whatever it is, it is not something you should go through alone.

the c-word part 2 or what to expect when you expect to be hospitalized

2012-01-03T20:49:00.000-08:00

every time i talk to someone about my experiences with cancer - and my various other health issues over the years - he or she says, "you should really write a book about this..."

let me prepare you here. this is a REALLY long post. (i might cut it up later) for now, i suggest you print it out and take it with you to make a checklist before you go to hospital. or print it out for your friends who have to go.

i am not a doctor and the FDA and the american cancer society will despise me, but i am starting to think i need to give people some of the basic stuff i've learned. if you read this and you know someone else who is unwell, not just cancer, because i also had meningitis, a rare liver virus, a spina bifida baby, an ovarian cyst... please pass it on. not everything is useful for everyone but some of it will definitely make a difference.

let's start with a trip to the hospital. when i was diagnosed with cancer, i walked into memorial sloan kettering and the very beautiful and lovely (i swear, she is a ringer for julia roberts) surgeon said to me, "i can offer you a hysterectomy on monday." this was thursday evening. she spoke as if she were offering me a slice of cake. this brilliant young surgeon was famous for her robotic, laser optic surgery which was promised to have a faster recovery and smaller scars.

i said, "i don't WANT a hysterectomy." which, given her polite and pleasant tone, was very rude, but honestly, she scared the hell out of me and i was scared already because i'd been hemorrhaging for the past two months and it was exhausting just to walk a city block.

again, fear does strange things to you.

when you've just been diagnosed with something horrid and possibly lifethreatening, you do what seems to be the rational thing, you go to the place where everything seems the most calm and organized, where everyone seems to have everything under control. and, in the case of msk, the place with the most pervasive and convincing ad campaign.

this seems smart. as consumers, when we really freak out, we go to the brand that is synonymous with the product. kleenex for tissues. for luxury, chanel or hermes. sony for televisions. in our house, it's the applestore for anything computer-related.

however, as it turns out, those big huge predictable organizations and corporations are not always the best as we all learned in 2011. you remember the old ways - if you feel queasy, drink canada dry ginger ale (but it does not have real ginger in it and the sugar combined with the carbonation will eat through your teeth and give you kidney stones) - or if you have a headache, take bayer or advil (which can have a rebound effect and can harm your kidneys). there is no longer safety in what seems to be "tried-and-true."

back to the advice i keep repeating. no matter what your doctor tells you, listen respectfully (but and have a friend with you, writing it all down so you can research the information) and make your own decision.

think about it this way, mcdonald's which successfully feeds millions of people everyday, does indeed have expertise in preparing food. however, its real area of expertise is quantity, consistency, making low-quality food taste good and in keeping profits high.

now compare mcdonald's to your mum, who has learned how to make nutritious meals for 4 or 5 people every night for 30 to 40 years. in her case, the area of food expertise will be about care, higher quality ingredients and taste. you can't always count on the consistency, but it is outweighed by the hands-on mindfulness of someone who loves you.

basically, the idea is to think small.

unless you are a rich, high-profile person, and even if you are, doctors are taught to look after you the way one is taught to bake. it's a formula. you follow certain actions in a particular order - like a recipe - and, assuming you followed the instructions correctly, you get certain reactions - like a golden brown cake.

in my mind, there are two problems with the way some doctors practice, especially in areas that are systemic (as opposed to a cut that needs stitches or a broken bone that needs to be re-set). and i don't totally blame the doctors themselves as insurance companies limit the amount of time they can spend with each patient as well as the space they have to think for themselves.

1. the formula is generally one-size-fits-all and human beings are not. in the same way that our metabolism, blood pressure, weight, muscle mass differ, even in families, our bodies heal differently and absorb and activate medications differently and feel pain differently.

i was at a party some months' ago and talking to a young doctor who worked for an HMO where he ended up treating a lot of latino patients. he said, "what people are talking about more and more are the differences in ethnicities and how they needed to be treated." you already know that your ethnicity affects your hair and skin color and texture, obviously, it affects how your internal organs operate as well.

2. the formula only treats one piece of problem. so you can bake a perfect cake but what about the frosting and the decoration and the rest of the party. the fact is that our bodies are all connected so what happens in your liver can affect your skin. it's one of those things that they used to believe in ancient times (where women had their left nostril pierced originally because it was meant to make childbirth less painful - can't tell you if it works because i didn't pay attention when my nose was pierced and got it on the right side instead. still wondering why the piercing person didn't ask why i wanted the wrong side til after it was finished.)

but let's say it's a day or two or a week later and you've done your research and you've decided you like and trust the doctor and you're checking into the hospital.

or let's say it's whenever the doctor tells you to come and you're too scared to do more research.

the hospital is a big place. this is how to make it feel small and you feel loved.

HOW TO SHRINK YOUR HOSPITAL

Your MOOD:

one of my best friends, sancha, who is a beautiful writer herself and has been in the hospital way too many times says this, "be an optimistic fatalist." you know you have to do it. be brave and walk in. keep in mind that it will all go well. speak to your angels and the Divine source and ask them to keep you safe.

be appreciative and be kind to all the people who help you there. it is a hard job looking after sick people, it's emotionally draining. if you're in a cancer hospital, it can be devastating.

pretend that you are actually a celebrity incognito or a princess (not the lindsay lohan kind, think audrey hepburn in roman holiday). be elegant, generous and kind, behave with the grace of a princess and people will treat you like one.

thank people.

Your NURSES

make friends with all of your nurses. learn their names if you can. ask them how they are. you'd be surprised how rarely anyone asks a nurse how she/he is. nurses work crazy long hours and they are often overwhelmed. they leave their kids for great stretches of time, they rarely get enough sleep. they deserve some attention and you can end up having a good conversation that can distract you from your own drama.

a good relationship with your nurse is your key to a bearable stay in the hospital. they are the ones who can get you a vase for the flowers or can get you a painkiller when something is throbbing and all the doctors have gone home. they can make concessions for you. i had a lovely nurse who switched all the generic pictures in my room with the ones in the hallway and other rooms, because i wanted to look at seascapes for three days rather than close-ups of flowers.

if you have to go back and forth to the hospital, you will see the same nurses over and over again, so it's worth it to get to know them. the nurses are your friends.

often, when you ask a nurse a question about your condition, she/he won't tell you the answer because only the doctor is really allowed to discuss your case, due to confidentiality or maybe insurance liability. but if you do get on well with your nurses, they will have lots of useful information for you, especially because they've dealt with lots of people who've had similar situations.

smile and look every person who helps you in the eye. they are human, too.

the one thing i can say about memorial sloan kettering is that they had the best nurses ever. and the hospital really is pleasant and extremely well-organized. one might not agree with the treatment methods, but it is very well run.

Your ROOMMATE

if you've really warmed up to a nurse, they might arrange it so you always have a private room. but sometimes it's just a very busy time.

if you have to share your room with another patient, be neighborly and considerate. ask them if it bothers them if you leave your toiletries on the bathroom counter. introduce them to your visitors - or have your visitors be especially quiet if your roommate is trying to rest. i used to give my roommates a heads-up, i.e., "my daughters are coming at 2pm, i hope they're not too noisy for you." take those noisy guests out of your room (if you can walk around).

sometimes your roommate wants to talk, sometimes they just want to close their eyes and rest. if you have the energy, take a moment to be human and ask your roommate how she/he is feeling.

if you're more mobile than your roommate, ask if she/he needs help. sometimes, it's just nice to have company.

Your DECOR

if you have to go to the hospital regularly, like for chemo once a week, try and always bring some fresh flowers with you when you check in. you can't always count on friends and visitors to bring you flowers and it's so nice to have a bit of nature in the room.

i always get flowers with a scent because it makes the smell of rubbing alcohol and chemicals less omnipresent. you don't really have to worry about them being too strong if you are on the east coast of the u.s. because hot house flowers don't often have a strong scent. almost any flowers are better than nothing. they say an experience of nature is calming and clears the head but you can't really bring a forest in there. when things are tense, you can gaze at the life and light surging through those bright green leaves and petals and feel a little transported.

i also brought a deep purple cashmere throw that my sister-in-law soraya gave me. it covered the twin bed perfectly and changed the color scheme, from beige and white and those weird prints that are on hospital upholstery, to something more cheerful. it was cozy because sometimes those cotton blankets feel thin and ineffective and other times, they get weird and tangly and sticky and you can seem to get them in a comfortable place.

i once brought in a diptyque scented candle. the nurse let me light it for about two minutes but i had to immediately blow it out because it could have exploded the oxygen tanks in the wall (who knew). in any case, scented candles are right out. diptyque makes a scented hanging thing - figuer is something fresh and faint that almost everyone likes and it never smells artificial at all.

i guess you could bring in a CD player but if you had a roommate who hated mozart, you would have to use headphones. i tended to bring my laptop, headphones and a lot of really silly comedy DVDs. since chemo made me spacey and stupid, i watched ridiculous things with lots of slapstick and simple storylines (my mind wandered like crazy). laughter is known to increase your immunity and they passed time.

it was difficult to read since the chemo also made me dizzy and i couldn't focus on the page, all the words turned into little rows of ants.

Your SNACKS

when i was having chemo, i was trying desperately to change my diet to lots of organic vegetables, live foods and anti-oxidants. also, let's face it, the food is horrendous in almost any hospital. i wanted something that had a taste and a texture, too.

i recommend eating organic even more emphatically while you're having chemo or radiation or surgery. your body is already being bombarded by chemicals, toxins and shock. it needs to be fed and nurtured gently.

also, hospitals give you food at meal times and it takes forever from the time you've asked for it til it gets there. if you're hungry before or after, it is wise to bring snacks.

personally, i liked brad's raw kale chips, nasty hot which i buy by the case since you save about $2.00 a box that way. i found chemo made me crave sharp, strong tastes, it battled the nausea (which i feel just thinking about it). also, snacks that you can put in that big drawer beside the bed so you can get them yourself without having to ask anyone or having to unplug and push your stupid IV all the way down the wall as you try and find the kitchen, are great. tortilla chips. raw almonds. dried fruit.

what i did keep in the fridge were a box or two of fresh, organic blueberries, some almond or coconut milk - i could add those to oatmeal in the morning for breakfast or put it in my tea. and any time anyone came over i'd ask them to bring me a fresh green vegetable juice from the local juice bar.

i'd also ask for salads a lot, but later on in chemo, i found it hard to chew all the rough pieces of lettuce with all the sores in my mouth. if i was really nauseated, i could eat tiny bits of iceberg lettuce and it made me feel better. icewater was good for that, too. (ugh, i feel awful just thinking about it).

Your NECESSITIES:

an EYEMASK is key. a nice silk one or an organic cotton one. they NEVER turn the lights out in the hospital. i found i needed one with an elastic so it stayed on my head when i finally fell asleep and flipped over. if it's pretty, even better. sometimes it feels good to have something really nice to look at and appreciate and it makes you feel glamorous.

a LONG SWEATER, dressing gown or sweatshirt with a zip or button front makes a huge difference because those stupid hospital gowns open in the back. i preferred a big cotton surfer's sweatshirt because the bright color cheered me up and the cotton was supersoft and beat-up. it was the length of a coat so i could close it up and look less like an invalid (or so i thought) as i wandered the hallways. and since it was cotton, i could fall asleep with it on and not get uncomfortably hot in the night. what you have to remember is, whatever you're wearing on your top when you get the IV put in is what you'll be stuck in until they take it out because of your sleeves.

personally, i hated those blue-and-white printed hospital gowns that looked like they turned everyone into babies or sick people. i liked being able to cover mine up and be an individual. i somehow found it easier to muster up some dignity whilst speaking to the doctors on their rounds if i looked like a normal person. more on that later...

SLIPPERS. basically, you have to go from your bed to the bathroom repeatedly and you don't want to do it in your socks and then put them back in your bed. socks also feel really awful if you step in something slightly wet. i recommend hardsoled slippers, like the kind you buy that you can walk your dog in or wear to go get the newspaper in the morning. in the winter, uggs' shearling scuffs are nice though the pastel colors get dirty really fast. i was lucky enough to have a pair of very brightly colored birkenstocks and i always got fresh pedicures because it also cheered me up to look at my feet (the only part of body that stayed recognizable through everything).

WIPES. i liked some natural lavender wipes. they are good to wipe your hands before you eat or to wipe off your tray if you want to put your laptop on it and they leave a fresh scent behind. you can also touch them to your temples when the doctor has just left things feel dire and the smell of lavender clears your head a bit.

all this stuff may seem absurdly expensive given your circumstances, but i suggest you invest in it anyway. it makes you feel chic and aristocratic and helps you continue to behave in a "noblesse oblige" fashion.

Your DOCTORS

as my friend sancha reminded me, they come in packs. the worst time (for me) was the morning rounds. because they would be fresh and dressed and joking and chatting amongst themselves as they came in. then you feel like a feeble, unwashed, beat-up vagrant who hasn't slept all night (because they wake you up every two or three hours to check your vitals) and the doctors all talk about you in the third-person. so here's what worked for me. i woke up (like i was ever REALLY asleep) an hour or two before rounds.

i'd get the nurse to unhook my IV and i'd attempt a shower or sponge bath in the bathroom. then i'd brush my hair and teeth, put on mascara and blush and attempt to look as civilized as possible. when i got back to bed, i'd get out my laptop and run through all the questions i'd had.

the doctors would come in. usually it's the big honcho, the head of the department, surrounded by fawning student-interns and a couple of nurses. the main doctor prods and pokes you in embarrassing ways and then the young doctors-in-training all ask if they can, too, just to further humiliate you. in order to maintain a sense of dignity, i suggest you take the time to learn as many of their names as you can. then have a bright conversation with them about your condition. take back the situation.

remember, this is about you as a human being, not you as a science project. this is the moment to ask your doctor every single question you have about your treatment. she/he will do her absolute best to answer you because she is also training all these young doctors and she wants to show good her bedside manner to them. if there is something you don't like or is not working, this is the time to ask.

i'd say make sure to do your research first and keep your questions on point so the doctors have to answer specifically rather than in vague generalizations. if you start to learn some medical jargon, i.e. "i feel pressure in the lower left quadrant of my abdomen," so much the better.

if you find something that makes you question a specific part of your treatment, print it out (but not HUGE texts with pages and pages) and give it to your doctor. most doctors work hard and lead somewhat harried lives. they can't always keep up with the latest information.

i've spoken to doctors who say the internet has done a big disservice to patients because "they all think they are experts." i suppose you could diagnose yourself with all kinds of stuff and freak yourself out no end if you were that kind of worried person.

when i was in high school, one of my best friends (who used to keep a personal stash of antibiotics in his cupboard) has a father who was a doctor. he used to joke, "the first thing a doctor always says: never self-medicate."

there is certainly a truth in that one shouldn't be taking antibiotics and OTC crap wildly.

however, what doctors sometimes forget is that you ARE an expert in one thing: your own body. you are the only one who knows how you feel. your intuition - if you take the time to listen to it - will probably tell you what's really wrong.

whatever happens in the hospital, remember that this particular movie is all about you. treat yourself like the hero that you are.

the c-word or ten pieces of advice

2011-12-07T07:46:00.000-08:00

once, at memorial sloan kettering, as a scottish chemo nurse was sticking an iv into my arm - ugh, i still feel nauseated just thinking about it - she murmured to me, "it does seem that people often develop cancer after an emotional crisis."

in my case, i can almost pinpoint when it happened. it was the beginning of march 2009. somehow, i always feel optimistic in the spring. the light changes and there's the smell of the thawing earth. in my old apartment, we woke to the sound of birds in the park.

in the fall of 2008, my freelance career seemed to run dry and by the spring, my savings and perfect credit rating were decimated. we were on the verge of being evicted from our apartment in the building we'd lived in for 17 years.

i was reduced to one goal, to keep my kids fed, clothed and in one place until the end of the school year, especially because it was a crucial year for sasha.

my now-extremely successful exhusbands combined forces to respond to my request for regular child support based on their incomes: "we are unwilling to support your unsustainable lifestyle..." one suggested i go on food stamps.

we downscaled, sold our clothes and furniture, moved into a tiny basement apartment around the corner using shopping carts, strollers and helpful college students. i made the place habitable myself with endless trips to ikea. my old landlord sued me. my other exhusband used this opportunity to sue me for all the money he didn't give us. they set up an emotional lynching and left all of us reeling. the wiring on my car was eaten by rats.

i fell behind on the mortgage payments.

then the place started flooding every time it rained. i complained to the building management and they ignored me. (i'm laughing because i sound like job)

last week, a friend of mine got mad at me for swimming every day because chlorine increases cancer risks, some say by 93% but here's the thing i believe

cancer is caused by stress.

stress, tension, anxiety, emotional distress - whatever combination of all of those things.

you know how when you tell a friend not to do something unhealthy and they say, "my grandmother smoked a pack a day and lived on lard until she was 105 and never got cancer..."

that's because you can be exposed to all kinds of horrid things and nothing can get to you until your emotions let your body down. it's a way of checking out.

i have more than one friend who never smoked a day in his life and got lung cancer. serious enough for surgery. i have a very young friend who got cancer in his spine and was gone before he was 27.

it's not to say that they consciously wished to die. but sometimes, the pressure is just too much.

when i started chemo at memorial sloan kettering and discovered that dying of cancer was not nearly as romantic as consumption - in fact, it was painful and slow and awful no matter how quick and aggressive your cancer was - i decided i was going to get well. and fast.

i was lucky on one side. my particular cancer had a 70% success with chemotherapy (30% death rate is still high, isn't it?) i had no metases (i put that down to giving up sugar, caffeine and animal products as soon as i was diagnosed) and the tumor seemed to have shrunk by half two weeks after i changed my diet.

so i told my doctor that i was well.

she said, "you're in denial."

i said, "cancer is the most psychosomatic disease there is. so i am going to believe that i am well and then i will be well."

she said, "we don't subscribe to that sort of thing at memorial sloan kettering. we don't believe cancer is some sort of punishment or there's some reason. we believe cancer just happens."

i laughed, "i don't think it's a punishment either."

in some ways, cancer can feel like a reward. a get-out-of-jail-free card. like in tom sawyer, where they go their funerals and hear everyone saying regretful things about them. people are so scared of cancer, it seems so incredibly bad, that they almost HAVE to feel sorry. you get to experience the i'll-bet-they'll-be-sorry-now in real life. when you're emaciated and bald with bloodshot eyes, people feel uncomfortable being mean to you (however, often the people you hope to spite manage to go right on).

sadly, the cutting-off-your-nose-to-spite-your-face pleasure is pretty short-lived.

even nice people get tired of being nice to you.

so here's what else i believe:

there is a cure for cancer.

actually, curing cancer is sort of like curing a cold. not to make too light of it, because a cold can turn into pneumonia or bronchitis and then it's a lot harder to cure, and sometimes, there's a part of you that just gets tired and gives up.

like colds, there is only so much the medical profession can do. if you want to get well, you have to commit to it yourself. and you have to be willing to trade all those people being nice to you for a big fight, both with yourself and your friends and family and doctors. it is not easy.

but if you want to stay around for little while longer, it is worth it.

so here, again, are my first pieces of advice if you even suspect the c-word.

this is what you for yourself do while all the doctors and relatives are running you around like an animal trying to figure out what is actually wrong and how to pinpoint and treat it.

i am not a doctor so i can't propose treatments, but i promise this will make you feel better.

1. stop eating simple sugars (including fruit, honey, potatoes, white flour), soy, caffeine and ALL animal products.

every chance you get, eat organic. if you can be choosy, eat cruciferous vegetables like they are going out of fashion. kale, swiss chard, broccoli, cabbage, brussell sprouts, cauliflower. you will just have to live with the gas.

even better, juice that kale and swiss chard and mustard greens, too. if you can get yourself a juicer and you have someone to work it, or you can afford to buy freshly-made organic juice outside, drink 16 to 20 oz of green juice at least once a day. skip the fruit. fruit is good for you, but right now you can't take the sugar.

2. start drinking water (chlorine filtered out, if you can) like crazy.

at the very least, 3 liters a day to flush all the junk (and what the cruciferous vegetables might be killing) out of your system. if you can, add alkaline drops or some natural/organic baking soda to your water. the more alkaline your system, the more your own immune system can fight.

3. rest.

it's like a cold, remember? give your body a break so it can fight it. exercise is good for preventing cancer but when you're in an outbreak - just like the flu - you need to rest up. if you're a mom, this is a chance to skip the ballet recitals and teacher conferences. do not drag yourself around. listen to your body. turn off your phone. close the door. don't fight with your husband(s) - ex and present.

4. get some heat.

one little known fact about cancer is that it lowers your body temperature. you feel cold all the time. it's sort of like the way you get cold after eating a really big meal. all your blood rushes to your stomach to help it digest and the rest of you gets no love. when you have cancer, all your blood seems to rush to the area of the cancer and heat it up and the rest of you gets cold. what seems to work is hypothermia. if you have no access to a sauna, get a bio-mat. they are expensive (like $700 for a small one and $1500 for a large). there are a lot of places to buy them, but they last forever and lying on one really makes you feel better. there is a theory that you lie on it for 40 minutes on its highest setting and get all sweaty (twice or three times a day) and you will supercharge your immune system to fight back.

if you do decide to get chemo, the mat is a good way to recover when you come home wrecked at the end of a session.

5. get some energy.

i recommend a strange and expensive supplement called polymva. it's a combination of palladium (like what the ironman used) and b-vitamins. i've been told it works by increasing oxygen to your cancer fighting cells. it tastes like marmite with no salt and you have to put a teaspoon or two of the blackish liquid in your water and drink it three times a day. it gives you a surprising amount of energy while the cancer is depleting you. unfortunately, i used to go through 4 bottles a month which gets very expensive. however, i had shockingly good results and it made the chemo hyper-effective.

the combination of polymva and people praying for me and over me before every session had my doctors running into my room saying, "it's a miracle!" after every new blood test result came in. i have no medical training, but this is what worked for me.

think about supplementing your own spiritual energy reserves with energy healing. i went to a healer called penney leyshon who seemed to help me gather my strength and resist the paralyzing fear and confusion. again, the idea is to truly believe and know you are well.

6. if you can do the other stuff - especially the first two - remember that you DO have time. really.

there are a few health issues where you must get immediate and urgent medical attention, like when you've been in a serious accident, or had a stroke or a heart attack, you are bleeding or have a broken leg. but for the most part, with cancer (and lots of other illnesses), if you are well enough to be out walking around, you have time to do some research and understand your options. take a deep breath. if you can't think straight, ask your friends to help you. right at the beginning, lots of people will have the energy to help. use them while you can because they will burn out.

7. know that you're scared.

and so is your doctor. and all of your family members and your friends. that's why they try and rush you into instant steps to deal with the cancer. cancer is one of those weird diseases that no one understands well and it behaves differently in almost every body it enters. also, different cancers behave differently, so no one can give you a one-size-fits-all answer.

fear is best handled with faith. and every faith tradition will tell you the same thing. it doesn't matter which one you choose, just put your faith in a higher power.

my suggestion would be, after you get your diagnosis, to avoid your doctors and immediate family members for a little bit because they will be acting out of panic. find a close friend who has a bit of time and can give you some help with an overview. find a couple of friends who can help you do research into your kind of cancer.

when i was diagnosed, i was so scared, i couldn't do much research because my anxiety made it impossible for me to understand what i was reading. i was exhausted from losing so much blood and the words jumped around the screen or the page and my thoughts all jumbled together.

i just wanted someone to tell me what to do. but, like everything else in the world, when you stop making decisions for yourself, other people make them for you.

8. look after your soul.

remember that this is YOUR body and YOUR life. while you are resting and/or lying on your mat, think about what you really want. sometimes, checking out is ok. sometimes, chemotherapy and surgery are what you feel most comfortable with. but remember that they all have long-term side effects. think about the kind of life you want afterwards. maybe you want to reduce your participation. maybe you want to play even harder.

pray, meditate, visualize.

oh also- whatever you do, don't feel sorry for yourself. i mean, everyone has their moments where they stamp around the house and say, "it's just not fair! why does this happen to ME?" and sob into their pillows and say, "oh my god, sharon married a great guy and her kids and her marriage is perfect and they have such a nice house and why i am in this situation?"

but after that, get over it and put your problems in perspective. the nature of the world is that there is always someone who has things much worse than you (or i) do. especially if you are middleclass and living in the first world.

if you blame other people for your situation or feel like a victim, then you're in someone or something else's control - and how can you possibly get well?

actually, this piece of advice works for just about everything. so get up, get going and laugh at the absurdity. you got yourself into this situation and you will get yourself out. if you really, really want to.

9. laugh.

watch idiotic funny movies. ask people to tell you jokes. if you're a mum, tell your kids to come and cuddle up with you in bed and ask you riddles. laughing is known to ramp up your immune system, too. the more you can laugh, the better. stay away from people who make you sad or worried. it might seem hard but remember, you are saving your life here.

10. wash your hands every time you're near a sink.

luck and gratitude

2011-11-24T09:43:00.000-08:00

walking out of our temporary apartment building yesterday to pick up our gluten-free jalapeno cornbread, i spotted a shiny penny on the carpet.

i picked it up. "hurray!" i smiled at rara, "i am SO lucky!"

she said, "it was face down, that's not lucky. you shouldn't have picked it up."

me: "i don't believe that. i pick up ALL pennies, they are all lucky!"

she giggled, "maybe that's why you have such bad luck."

me: "i don't have bad luck! i am one of the luckiest people!"

she said, "you have the worst luck of anyone - you got cancer, you lost your apartment, you got hit by a taxi, your new apartment got flooded, your car was eaten by rats - mama, you are NOT lucky!"

i started laughing myself: "i got cancer and i got well, we have another apartment in the same neighborhood, i survived the taxi accident with just a few scars, we're staying in temporary apartment on the 47th floor with the most beautiful views ever, the insurance fixed my car. i do work i love. i have great friends and i have three smart and pretty daughters -"

rara interrupted, laughing, too: "ok, at least, you have ONE smart pretty daughter."

it made me think about tennessee williams' quote: "luck is believing you are lucky." there's a theory that luck is a psychological state rather than a psychic one. lucky people see the positive side to every situation.

and lucky people are grateful ones. as ariana huffington says, we should also "occupy gratitude."

there is so much i am grateful for. apart from all the things i already told rara, it's the pleasure of sitting in a stream of sunlight in the morning as i drink my tea. it's the ability to fill my lungs with air and exhale a satisfying breath. i am so grateful for breathing.

and there's the elasticity in my muscles when i swim laps - oh how delicious to be able to swim after my months of chemo - to be weightless and cocooned in the water and free of ivs and wires. and being able to walk around on my own, to think clearly, to remember. i love being able to sleep. sinking into a pillow at night and drifting off or the luxury of occasionally being able to sleep late into the morning.

and the surprising, painful joy of waking early enough to see the sunrise. that magical moment when anything is possible.

i am grateful that my children always have fresh, abundant food and clean beds to sleep in and more clothes than they know what to do with. they have lots of shoes and our apartment is warm and watertight. i am grateful that they know they are loved by their parents (even if their parents don't love each other). i am grateful that when it's raining or snowing, i can pick them up in a car and we can all drive warm and dry in the car, unlike so many people who must walk or sleep or live outside.

i am grateful that i am not frightened anyone will hurt me or that bombs will explode outside my home or the school. that my daughters all made it up to adolescence with all their limbs intact and without being hurt or molested or abused.

i am grateful for the small unexpected moments of luck that seem to show up on my doorstep - a shiny penny! the elevator right there when i walk out! the subway arriving just as i get to the platform! problems that find solutions (with a lot of persistence)! a new project that fills me with the thrill of an intellectual challenge as i rush to solve it.

finding white roses with pink edges in the supermarket and being able to afford to bring them home. having the vision to see them, oh they are so beautiful and alive! and the world is filled with so many beautiful things to drink in with your eyes.

how lucky, how lucky to be able to see.

five years ago, in november, i drove down the pacific coast highway from san francisco to santa cruz, california to visit my college friends. i was so struck by the incredible, brutal beauty of the cliffs and the sea that i had to keep stopping the car to gaze at it. the 2-hour drive took me 4. i kept thinking that those views were the reason i had eyes. that in some sense, i existed in order to witness that beauty.

two years ago, i spent thanksgiving in the emergency room at memorial sloan kettering and when i got home i was too sick to eat anything. but i am still grateful for my cousin noor who sat with me for hours and my friend and healer, penney leyshon, who appeared like an angel in my curtained cubicle and made the bleeding stop with her energy. my brother who baked a pumpkin pie with no dairy or sugar or wheat.

i am grateful for my skin, my hair, my body. that i regained all the nerve sensation in my fingers and i touch and feel so many lovely things.

i breathed a sigh of gratitude upon hearing that my friend mona eltahawy, the courageous egyptian-american journalist, was set free after being beaten and detained by the egyptian police.

the dog licking my toes under the table...

thank YOU to the Divine, God, Allah, Jesus, Brahma, Intelligence, the Universe, for all the pleasures of the flesh as well as the soul.

Each one of my particles called out with its own voice,
"All praise be to God and thanksgiving!"

— Jalaluddin Rumi

how lucky we are.

might is right

2011-11-15T14:34:00.000-08:00

a friend recently sent me an email about her young cousin, yaman al qadri, a 19 year-old college student who was viciously beaten and taken into custody by syrian forces. another friend posted on her facebook page about the 14 year-old boy hamza al-khatib who'd been tortured and beaten to death. there is the recent story of sasha and RISD, the children used by jerry sandusky at penn state (and no one complained because they didn't want to jeopardize the football team, or the main money-generating activity at the university). friends at universities and colleges all over the country have told me about the way students are being criminalized for the smallest infractions especially if those students have not paid their tuition upfront. no one wants an insurance liability, even if ethics suggest otherwise.

in moments of uncertainty, do we always prey on the small? we use them to appease our fear. maybe that's how we feel we regain a bit of power and control in our world. are the smallest on the food chain likely to become casualties of the current global uncertainty?

correct me if my vision of a pattern doesn't fit. (my father used to tell me a joke that illustrated the human habit of imagining that everyone else is in the same situation as you are. the story began with two college boys and one lent the other his motorcycle. the second boy ended by crashing his friend's bike in a head-on collision with a car during the night. when the owner of the motorcycle came to visit his friend in hospital, he asked how it happened. the second boy said, "the bridge was so narrow that when i saw the headlights of 2 motorcycles coming towards me, instead of passing, i decided to drive between them.")

on the other hand, there is the recent death of hana williams and the injuries of other children relating to the parenting book, "to train up a child" by michael pearl. the book that has taken the right-wing parenting world by storm and has thousands of adherents. it seems that the most defenseless amongst us are the first to suffer the effects of the fear that the world is slipping away. it's clear that the rigidity of the tea partiers and the harsh, unwavering judgement of people like ron paul will certainly take out the weakest first.

while people are rising up against "wall street" and the 1% - despite michael bloomberg and the administration's ongoing attempts to squash them - perhaps we should also be rising up FOR children.

we should be taking a stand for a kinder, gentler world that protects our most vulnerable and most quiet.

would you call it #occupyhumanity ?

the end of childhood

2011-11-06T12:21:00.000-08:00

just shy of 3 weeks' into her freshman year at the rhode island school of design (RISD), sasha finds herself bleary-eyed and lost outside the district courthouse in providence. she's running on 2 days' with very little sleep because she got back from her first weekend back home in new york city the night before. she's still wearing the sweatshirt she wore back on the train, "The United Nations International School, NYC." it's the idealistic school she attended from kindergarten to 12th-grade. the lunch ladies had known her since before she was too small to carry her own money.

she's a bright but shy girl. when she was a toddler, city testing showed high levels of lead in her blood. we think that's probably why she developed ADD in adolescence. it makes her dreamy and easily carried away in her thoughts, so it takes some mustering up of will to ask a stranger which way to get back to the college. she looks up the road to a church steeple that looks vaguely familar.

last night, she had a sleepless night in a freezing cold jail cell, because RISD public safety had her arrested for coming in to tell them she mistakenly ignited a piece of paper on a bulletin board as she was leaving the dormitory (even though she didn't leave the spot before she was certain the entire thing had been extinguished). it was out in less than a minute.

when every wisp of smoke was gone, she walked out of the building and heard the fire alarms and the engines coming. she thought she'd better reassure everyone that it was not a serious fire, nothing was damaged and no one was in danger. she did what she had been taught to do all through her education at the United Nations School. be kind. be conscious. be caring. when she made a mistake, she admitted it, apologized and tried to rectify the situation as best she could.

even that night, she was tired. the first semester at RISD is known for being grueling. she'd had a studio class from 8am to 7pm and then she worked on her homework in her room for 3 hours before she and her friends had decided to go out for a cigarette break at about 11pm. she was spacey and she was sorry.

providence is small but the RISD freshman schedule is so dense so she's not been off college hill much except to the library. she'd never been in this part of town before. there's no one there to pick her up, her I.D. and cell phone had been confiscated, and they didn't let her get her wallet so she guesses she'll just have to walk back. her wrists are still sore from being handcuffed to another prisoner for hours.

the security guard at entrance of the courthouse nods her to the direction of the college and she heads up the road. sasha had never lived on her own before. until now, the biggest trouble she'd ever gotten herself into was bringing waterguns to school at the end of the senior year. they were confiscated by the teachers before anyone got wet.

that said, she's used to being the oldest of three sisters and taking responsibility for the pack, especially since she and sisters were on their own with me for the past 12 years. she realized how serious her job was while I was recovering from months of chemotherapy. so she doesn't complain and she doesn't get angry.

she is blinking in the sunlight and still trying to make sense of what happened during her arraignment. it was her first time in a courtroom. unlike her sisters, she's not a fan of "Law and Order." one of the men asked her if she was pleading guilty or not guilty. her father told her afterwards that that was the public defender. she wasn't sure what she was being told to sign, but she did it because she was told to.

afterwards, her younger sister told her that "the guy who said what happened," was the prosecutor. sasha said he told the judge that she had turned herself in and the police report showed that she was forthcoming and remorseful. the judge allowed her to go. sasha thought it was over.

that night, police were loathe to arrest sasha but the burly RISD public security officer insisted. he'd probably had it up to here with the boisterous new pack of freshmen. sasha said that when she "confessed," he said, "this is serious! the police are coming!" the arson police. they questioned her and quickly realized it was neither deliberate nor malicious.

disapproving, the scowling RISD public security officer closed the door on the little room sasha was held in while he conferred with them. sasha heard the same RISD public security officer say, "let's teach her a lesson - let her spend the night in jail." the next thing she knew she was being handcuffed and put in the back of a squadcar and drove her down to the station. she was still in her UNIS sweats - and she ended being stuck wearing the same clothes for the next 24 hours.

sasha had never heard the term "paterfamilias." when I was in college, the college administration became your guardians. they were protective of their students and our reputations. they tried to keep us out of trouble with the police and help us learn our lessons within the safety of the school administration. they would never have wanted to ruin the entire academic career or mar a life with an arrest record - especially when their job was nurture us and help us grow.

when sasha got back up to college, she was worried because she'd missed her morning class. her next class wasn't til 4pm so she thought she might have time to shower and change and have a quick nap before. she went back to RISD public safety to get her ID and phone back so she could call me and her father.

when she got there, they told her she was suspended.

she was forbidden to be on campus without supervision. they told her she could not leave the office. no longer a person, she is an insurance liability.

half-asleep and disoriented, she was made to sit in a chair for the next 7 hours until james (her stepfather) could drive up from the city to collect her. she had no cell phone, no computer, no book but she kept falling asleep anyway. a kindly school administrator brought her back a bagel but she was too tired to eat.

back in NYC, I got a call at 1:03am from the head of RISD Student Life. "your daughter's been arrested and she's in jail," he was seething, so angry i could almost feel him spitting through the phone.

i said, "are you sure? sasha? why?"

he said, "she set a bulletin board on fire."

at first, I almost laughed, thinking this was some kind of joke. "really?"

"we take fire very seriously at RISD. sasha has a lot to answer for!" he speaks through clenched teeth.

"there must be some mistake, sasha isn't that kind of a kid. she doesn't do those sort of things. what happened?"

"sasha is 18. she is an adult. if you want to know what happened, you'll have to call the police station." he gave me the number of the police station and his cell phone - though he made it clear he despised all the freshmen, and sasha most vehemently.

like sasha, i am equally baffled. i have never been handcuffed or put in jail or had an arraignment. i call the police station and the kindly police officer who had arrested her, reassured me. "she's a good kid, don't worry," she tells me. "i'll try and tell her i talked to you. they'll release her in the morning and she can call you then." she tells me that she wouldn't have even arrested her at all if RISD public safety hadn't insisted. "there was no real damage to property, no harm to anyone," she says. "i don't know why they wanted to send her down here, but it will probably be dismissed in the morning. there's not even a real charge."

i call the director of resident life again and tell him i am a single mother with two more teenagers at home. i am six hours away from providence and not sure what to do now.

he sneers and tells me that his only comfort is that he never made the mistake of producing his own teenagers. "i really shouldn't do this since sasha is 18, but i'll call you tomorrow and tell you what's been determined."

the next morning at about 11am, he calls to tell me that it's likely sasha will be sent home. he's not sure yet, but one should make arrangements to collect her. i've got parent-teacher meetings for rara and zarina and james is shooting a movie but he manages to shut down his crew by 2pm and drive up to providence.

a week later, sasha is summoned back to the school for a "disciplinary hearing." in a panic, i take her to a clinical psychiatrist to see if i didn't understand - and she was secretly malicious. but no, a thorough examination makes it clear that she is the girl we know and love. no desire to hurt anyone or destroy property. on the other hand, she is diagnosed with ADD inattentive disorder. in other words, she is shy and spacey but gentle, not defiant. we bring the psychiatrist's report to RISD.

RISD suggests she find an advisor for a disciplinary hearing. after 3 weeks in RISD, she has no one to turn to. she tells them that, so they suggest another student, just one year older than her, who is equally clueless about how to respond.

for two hours, sasha is grilled by four administrators and four students, none of whom had read her telling of what happened or the psychiatrist's report or any of the additional papers she included. sasha is not given any of the information used against her by the college. though there is a scratchy, black-and-white security camera film - which only shoots a frame every 3 seconds. in it, sasha passes with a group of kids, laughing and horsing around. her hands are never in frame, so without her own testimony, there was no proof she ignited it.

despite the scowling RISD public safety officer, sasha has to prove that she turned herself in. that is not on the record. now those campus safety officers, locals with a reputation for harshness towards the artsy rich kids who attend the college, have full police powers.

of the other students who witnessed the event, two came forward and corroborated sasha's story while the third one was so intimidated that he simply threw sasha under the bus. he was a boy who'd had his romantic advances towards sasha rebuffed and wasn't inclined to help at the risk of looking bad (he'd been there and done nothing to help).

of course, under the pressure of scrutiny, sasha dissolved into tears and was unable to speak.

the results of the hearing? sasha is suspended for two years. she can re-apply to RISD then.

the chances that she can get a place in another college after a disciplinary suspension are infinitesimal.

one of james' friends wrote a letter to RISD protesting sasha's treatment. as the father of a college freshman at another art college, he talked about his fear of the current criminalization of students.

he talked about the way in which the world has changed and humanity has been replaced by the requirements of insurance and legal structures. the way in which what is happening at all the #occupy movements is echoing what happened in the arab spring - and the way in which brutal police force has become accepted in retaliation for minor infractions. that we have become so accustomed to being treated harshly by the authorities that we are too frightened to protest.

in the meantime, sasha is sitting at home, in limbo. she's been cooking for her sisters, helping around the house. going with me to movies and surviving on the texts and emails of her friends who are all in throes of their first semester in university. they tell her about all their new friends and their favorite classes. occasionally, she bursts into tears, saying, "it's just so unfair..." but usually, she just says she's lonely.

more bizarrely, she wants nothing more than to be allowed to go back to school. she loved RISD. even though she spent the past two years studying art intensively for the International Baccalaureat, she focused on her passion, photography. RISD opened up a whole new world - drawing, painting, design. it was terrifying and thrilling. she knew she was behind the curve because she'd never learned those skills, but she was inspired by her classmates. "everyone here is so creative! they are always thinking of cool new things to do," she was exhilarated by the energy around her.

since our apartment flooded this summer, we've moved from one temporary home to another. our current tiny apartment is now crowded with all the things from sasha's dorm room. sasha shares a room with me and zarina shares a room with rara.

at 18, sasha is an adult according to the law. though if something goes wrong, or the college needs to be paid, they call her parents. despite that, what we can do to help sasha is limited. like everyone else today, we are subject to laws and rules that seem to defy intelligence and common sense.

everyone - from her school guidance counselor to people who've known her since babyhood - sent letters and emails to RISD vouching for her kind nature. we've had artists simply email to protest RISD's draconian response to a childish mistake. the administration responded with emails saying they needed to consider the safety of the other students.

as if sasha was not a student. as if her presence alone was a threat. however, no one from RISD telephoned or emailed sasha to see how she was.

we are all growing up through this incident. learning that all the idealistic things we've taught our kids - always take responsibility for what you do, apologize, be honest, protect your friends, trust your teachers and the authorities to look out for your best interests - are no longer valid in the present society. we've learned that authorities are not reasonable and wisdom is less important than face value.

this is where the innocence of childhood ends. but what goes in its place?

housing works

2011-07-25T19:42:00.000-07:00

feeling a little dejected today.

a friend laughingly said to me, "you must have been REALLY bad in a past lifetime because i can't believe how much stuff is happening to you."

i've spoken to a couple of real estate agents who smile dryly and say this sort of situation is all too common in new york city.

perhaps it's divine retribution of sorts. i am one of those people who is very attached to my home. even worse, my neighborhood. it gives me a sense of stability and structure that allows me to run around, work freelance in different offices, be as reckless as i want in the rest of my life.

my home is my sanctuary. my base. it's where i feel safe. it's where i feel like i can protect my teenagers from the dangers of the outside world.

in the past two years, my living situation has been on a bit of a downhill slide.

of course, my irresponsibly getting cancer and not working didn't help much. add to that, an exhusband who chose to play out his own revenge scheme just as the family income and my health hit bottom.

now i'm not really in hell, but i am in limbo.

the past sweltering week has been the worst heat wave in nyc in decade.

i normally LOVE the summer heat but prior to that, we had a couple weeks of rain crashing through the wall like a giant waterfall and flooding the girls' bedrooms repeatedly and eventually drenching mine, too.

now the resulting mold has gotten so bad that one is choked by the smell upon opening the door.

i usually run in to grab a few things and rush out with a shopping bag, a runny nose, a cough and a raging headache.

(apparently, mold is much more toxic for someone with cancer or who has had cancer treatment - perhaps because of our compromised immune systems - and for people who've had lyme disease and asthma. that would be zarina, so she's stuck at james'.

since people keep asking me to write all my secret health solutions down - here's today's information - i get immediate relief from large doses of vitamin c, tumeric and chlorella. then a shot of wheat grass a little later. but even a tiny bit of sugar or dairy can bring the reaction all back. also, at night my lungs get so clogged i wake up gasping for air. at that point, i put some silver biotics in a nasal spray http://www.silverbiotics.com inhale deeply and try and get it down into my lungs. by the way, you know it's bad when you blow your nose and the tissue is streaked with black mold.

if i remember i put a couple of drops of "thieves" oil on my pillow, too. if i've heard a diffuser is good for that.

additional life advice - after some extensive research, the best homeowner's/renter's insurance company is amica and i recommend EVERYONE scrape the money together to get some because they will rescue you, even if it's just temporarily. it does make you feel better. also, state farm is not covering any of my destroyed furniture because it's the result of poor building maintenance. check your insurance policy for water damage and mold remediation, it's very common in nyc and lots of companies don't cover it. so the "like a good neighbor" is being put to the test.)

not that i should really be complaining because limbo means living a few blocks away in a 4-star hotel with powerful air conditioning.

however, as sartre explains, hell is really the waiting room.

our no-exit is a gigantic bed in a tiny room as befits new york city. fill it with a few teenagers and a dog and the hotel california gets a lot less glamorous.

nightly chocolates on the pillows lose their appeal when you've eaten all your meals in the bed (since no other furniture fits in here).

i desperately want to cook and sit at the table. i want to buy flowers. i want to have bowls of peaches ripening in the sun. my organic diet and juicing routine have gone out the window.

the puppy's getting antsy in the miniscule space. she now barks like a maniac every time someone comes down the hall and runs around in circles like a wind-up toy. i've smuggled in a few steak bones to quiet her down but i'm worried the rest of guests might not be friendly too much longer.

back at home, it looks like a sinking ship. we've dragged as much stuff as we can save into the one part of the apartment that didn't have water pouring into it. we run in from time to time to get the stuff we need.

the amazons can't find their clothes. sasha's lost her passport and the pieces of her college application she needed to do over the summer. rara is down in dc with my parents but she's panicked she won't be able to come back.

my homeowner's insurance says that they are ready to rip out the walls, clean the mold and put everything back in again but my building's insurance is dragging their heels. just as the building refused to repair the leak over the past four years. one of my neighbors, despite being a banker, knows a bit about construction so i asked him what was going on. he told me to call my handyman. i asked if he had anyone he could send over. he laughed, "i'm not going to pay for it!"

another of my banker neighbors muttered, "just fix it yourself. that's what i would do."

not to sound all-girly and clueless, but i did pay a number of people to fix the leak over the years and now that i've been forced to be up on the roof regularly, i can see they didn't do a great job.

is the moral of the story that you should learn to do your own construction?

it's funny, in the legal tangles i've faced, i've spoken to lots of lawyers who've repeated what the most recent one did.

a kindly and high-powered gentleman, his retainer was more than my monthly mortgage payment. "i'm so sorry, my dear. it doesn't matter if you're right, it matters if you have the financial backing to prove it in court."

trying to think what a real amazon would do.

i just want my home back.

ah, new york city.

cocktail waitresses and mothers

2011-05-13T16:26:00.000-07:00

back when i thought my life was my own, i spent some time as a waitress. one thing you learn fast is that when you're carrying a tray of drinks, you shift your weight so that when someone takes a heavy glass off the tray, it stays balanced. you learn to stop sometimes to re-arrange everything on the tray so it won't topple over when the next thing goes.

these days, as sasha prepares to go to college, i can feel our family shifting as we get ready to lose a cornerstone. sasha and i moved back to nyc on our own and every decision i made after that - where i'd live, who i'd marry, the work i did, what sort of food i'd eat - was based on being sasha's mother.

it seems like five minutes ago, sasha was so new that when someone said to me, "i just met your daughter!" it took me a second to realize who they were talking about.

james didn't just marry me, he married us. i always believed he liked the idea of getting a little instant family. so sasha set the tone for everyone else. she chose the first toys and then the other two got matching ones. it was her developing fashion sense that dressed the others. if she wanted to see a movie or take karate or ballet, then everyone else came along for the ride.

all three went to the united nations international school, because it seemed so perfect for sasha. all three took ballet and piano - but no one else took karate because she'd lost interest in it by the time they were old enough.

first, zarina and then rara wore sasha's hand-me-downs (of course, now zarina is taller, has expensive taste and loves shopping, so we all wear HER hand-me-ups).

zarina is becoming more responsible and serious and moving up into the oldest sister position. rara is becoming more defiant as she stops being the baby. we're rearranging the places. and realizing that, in 2 years, zarina will be gone, too. the family dynamic we developed over the past 12 years is evolving.

sasha's acceptance to her first choice of colleges gave her the confidence to make a series of rapid psychological leaps in a month that many less cautious kids made over the past few years - she's learning to cook, reading the newspaper, opened a checking account. without being asked, she walks to the supermarket and buys the missing items from the fridge or walks the dog or cleans up the kitchen. she's eating salad instead of cookies.

on the other hand, she comes home later and later at night. she tests out new nightspots (but, at least, she also goes to museums). i watch her nervously but i don't place too many limits right now. if she's going to fall, i'd rather have her do it here where i'm around to pick up the pieces then when she's far from home for almost the first (long) stretch of time.

so these days, i am adjusting the tray and wondering how i will balance the sense of liberation with the empty space (soon to be filled, i'm sure).

if you're happy and you don't know it...

2011-05-01T16:25:00.000-07:00

i read somewhere - i wish i could remember where, maybe o magazine or maybe ode - that just the act of smiling changes your state of mind.

so as we drove back from syracuse on friday and we hit one road block and construction detour after another, i forced myself to smile.

sasha was playing a bunch of oldies on her ipod so that cheered me up, too - but i would have been swearing and stressing out and slamming on the brakes every 5 minutes - and i wasn't.

not that i was a jolly bundle of joy either, but i did arrive home after 9 hours of driving, without tense neck and shoulder muscles or back spasms.

"they" (whoever that was) say that the muscles in your face make the rest of your body relax and calm your mind and so they did.

my friend janan delgado once told me that there was a hadith (saying of the muslim prophet muhammad pbuh) that if you are angry, sit down. and if you are still angry, lie down.

since i've tossed and turned at night, seething over some perceived injustice, i know this doesn't work for me - but it's the same theory. if you smile - REALLY SMILE - not just a forced, pretending to be polite pained smile; let it soak in and feel like you're standing on a beach listening to calypso and smelling tropical flowers, you WILL feel better.

just results of my test.

object memory

2011-03-15T14:01:00.000-07:00

i was cutting fruit for the amazons' breakfast the other morning and i was overwhelmed by a sense of sadness. looking at the rows of organic strawberries neatly laid into the plastic boxes, i could almost see the fingers of the mexican workers carefully placing them there, the big ones at the bottom, the small on top.

i remembered reading somewhere about the way the migrant workers are treated, the abuse at the hands of foremen and business owners. i remembered reading about "the fields of panties" - where pretty young girls are raped between the rows.

i don't know if my particular box of strawberries came to wholefoods that way. i don't know if i was feeling particularly sensitive or if the articles just flashed into my mind at that moment.

but it occurred to me that objects might retain a memory, an energetic impression, of the emotions of the people who touched them or used them.

as i sliced the strawberries, i wondered about things, our every day things here in this first world, in this modern, convenient, upper middle class world and whether their journeys to us could infuse us with their sadness or satisfaction.

is it a purely poetic thought that food grown in pain would bring suffering to our bodies as we ingest it?

or that clothing pieced together by political prisoners, toys made underpaid children, would introduce yearning and hunger to our nervous systems.

there is a story - is it medea? where she makes a dress for her husband's new wife and the minute it touches the new wife's skin, it burns her alive, so that she experiences the pain that medea feels.

i wear a pair of burmese earrings my grandmother left me. she didn't leave them to me exactly, but an uncle bequeathed them to me since he is not married.

i don't know if they are the most beautiful earrings but when i wear them and look at my ears, i see my grandmother's pale pink earlobes. i feel i disappear into her, as reality bends, just for a few seconds. i can feel her love of opulence and magnificence.

my teenaged daughters are wearing saris that my mother brought back from india and i wonder if they can feel the hands of the tailor who used to use a pedal operated sewing machine when i was a teenager and is now part of the "new india" with a cell phone and a fancy electric machine - though his living conditions don't quite keep up. the new india is not so good for everyone.

if our objects, our clothes, our stuff, retain the emotions of their last owners or creators, then we have a responsibility to ourselves as well as to our consciences to look after the laborers who make them.

memories

2011-01-29T21:08:00.000-08:00

standing on the edge of last year, letting the memories drip into the beginning of this one.

what a year.

my thrilling news: i walked out of the pool and back to my locker and miracle! i remembered the combination of my lock.

yes, my short-term memory is slipping back in. little by little.

i am beginning to think clearly. beginning to remember how to work.

the amazons are acting out, but i think it's finally the relief giving way to all the pent-up fear and anger and pain of the past year.

on january 26, i found myself watching the demonstrations in egypt and crying. and crying. i am frightened of the violence getting out of control. i am frightened for what will happen when the government collapses. i am worried that revolutionaries often don't think things out.

i don't know why, miles away in new york, it feels so immediate. so real. so possible.

working on park51, i see how close the anger - even in this country - is to the surface. i read the blogs, the diatribes. i see the frustration with unemployment, the unceasing bill collectors, the banks, the unclear government policy. people complain that americans are unintellectual, they just want things simple.

and i get it.

i just want things simple. i want little things.

like most people everyday, here's what i think when i lie in the dark:

if i can just get sasha into college (and figure out how to pay for it), get the hole in my roof and the stairs fixed, my car rat-proofed and get caught up with my mortgage and all those medical bills...

will i be able to sleep peacefully at night, then?

(the insomnia's also part of the remains of the chemo)

will the rightwing fundamentalist tea partiers take over? or will the obama administration manage to get ahold of things. will we ever get medicial care for everyone? medical care that doesn't leave you buried in so many bills you wonder if you should have just tried to treat yourself?

but in the snowy mornings, i am smiling again, looking around and feeling very grateful. for heat, food in the refrigerator, electricity, a telephone and the internet. peaceful streets.

for being here.

is it better to be alive than dead? i don't know. but it does seem better for the amazons to have me here.

(and thank you thank thank thank you again to all my friends and family for all their help physically, financially, emotionally. you are the reason i keep body and soul together. )

excuse the crazy hair

2010-12-15T10:03:00.000-08:00


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.

live for today

2010-12-01T10:57:00.000-08:00

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 jiveturkey.com 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.

30 days of beaucell!

2010-11-30T14:43:00.000-08:00

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.

day 26, 27, 29

2010-11-29T18:48:00.000-08:00

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

day 18

2010-11-20T10:46:00.000-08:00

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.

day 17 - you looked fantastic!

2010-11-19T13:02:00.000-08:00

left side

rightside

head-on

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:

"wow!"

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.

two weeks and 1 day

2010-11-18T12:58:00.000-08:00

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!

spacey sunday

2010-11-07T17:51:00.000-08:00

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.

day 4

2010-11-06T13:54:00.000-07:00

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.

day 2.5

2010-11-04T10:09:00.000-07:00

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.

testing, testing

2010-11-03T19:16:00.000-07:00

i have been given the quite wonderful job of guinea pig for my friend mary schook (beauty engineer extraordinaire) http://www.maryschook.com/

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.

mothers with children

2010-10-10T12:05:00.000-07:00

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?

ameena & the amazons

2010-09-30T14:35:00.000-07:00

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).

wonderwomen

2010-09-05T11:15:00.000-07:00

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, often with a kid or two 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 50s 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.

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…”

eraser head

2010-07-15T07:26:00.000-07:00

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

you're spacey, forgetful, self-absorbed.

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

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

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

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

i am not a patient person.

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

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

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

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

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

just as i suspected

2010-07-13T19:10:00.000-07:00

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

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

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

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

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

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

ameena in medical-land

2010-07-08T19:44:00.000-07:00

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

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

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

(speaking from ongoing experience)

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

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

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

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

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

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

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

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

the problem is all inside my head.

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

oh - and another $300 of supplements.

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

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

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

ha-ha-ha (evil laugh)

RIP Giovanni Russo

2010-07-06T13:11:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

the all-access pass has been revoked

2010-07-05T13:03:00.000-07:00

the free-pass of having cancer is over now.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

something like that.

i guess it's not so bad.

the amazon diaries

2010-05-04T16:48:00.000-07:00

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

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

oh! all you people!

i am so HAPPY to see you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2010-04-30T14:12:00.000-07:00

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.

cloak of invisiblity

2010-04-20T17:21:00.000-07:00

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.

beauty and all its forms

2010-04-19T07:17:00.001-07:00

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.

lucky lucky lucky

2010-03-29T19:50:00.000-07:00

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.

two weeks of work and 14 laps

2010-03-28T20:30:00.000-07:00

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...

phase three: time to get moving

2010-03-11T07:55:00.000-08:00

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.

thanks a lot

2010-03-09T19:49:00.000-08:00

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.

cancer phase two

2010-03-01T15:00:00.000-08:00

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!"

70%

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.)

ultrasound & blood tests

2010-02-26T08:50:00.000-08:00

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.

on being disabled

2010-02-24T13:53:00.000-08:00

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.

eyelashes

2010-02-19T14:59:00.000-08:00

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.

peaks and valleys

2010-02-18T12:40:00.000-08:00

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.

magical mystery tour

2010-02-17T15:10:00.000-08:00

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

is that all they needed?

2010-02-15T06:38:00.000-08:00

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.

oh and one more thing

2010-02-07T13:43:00.000-08:00

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

2010-02-07T10:32:00.000-08:00

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.

why can i never post links

2010-02-03T12:33:00.000-08:00

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.

in the way life does

2010-02-02T19:18:00.001-08:00

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.

adolescence on both ends

2010-02-01T17:40:00.000-08:00

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.

don't be afraid of death or cancer

2010-01-30T13:26:00.000-08:00

my first and key piece of advice to all cancer patients.

it sounds like a joke but i am really serious. this is more important than giving up sugar.

if you are ever diagnosed with cancer, if your friend or family member is, tell them, tell yourself, this first.

do not be afraid.

because when you get to the doctor's office, you will be in a panic. you're so scared of cancer that you're terrified you're about to die. and then the doctor, in a calm and bossy voice will tell you what to do. and like a robot, you will just listen and do they tell you.

and that can get you in a lot of trouble. fear does that.

if your doctor says - like mine did when i'd just come in for an examination - "you can't leave, i am checking you into the hospital right away," your heart will be beating so hard, blood will all rush to your head, pumping behind your eyes and throbbing through your skull. you won't be able to see or hear properly and your adrenaline will kick in.

then you won't consult other doctors, you won't know if this is the best treatment for your body, you won't know if you like the facility you are in, you won't even know if you like the way your doctor speaks to you.

if on the other hand, you say, "i'll go home and put things in order and come in tomorrow morning," you will have a little time to discover that you are a capable and functioning adult. you can say, "i don't want a transfusion, i want..."

you can take a deep breath and realize that cancer is not a death sentence. if you look around at your life and your lifestyle, you may notice the triggers that made you ill (i think they jump out at you at crucial moments, when you're first diagnosed, you might have a moment of clarity).

you may discover that tons of people you know have experienced cancer on some level and recovered. and then gone back to their lives as if it almost never happened.

you might take some time to do some research (i guarantee you, cancer will NOT kill you overnight and once you start treatment, it's harder to seek out other options because the treatment can be so time-consuming and overwhelming). there are a lot of different kinds of cures, not all in hospitals. and different cancers respond to different kinds of medicines - whether they are chemotherapy and radiation - or whether they are sound therapy and acupuncture.

sometimes, it's good to combine one or two or several. take the time to understand your particular cancer and how it works because once you get on the medical merry-go-round, they might not take the time to explain it to you.

even if you just have 45 minutes - take that time and meditate and take your body's temperature - psychically - what feels ok and where you feel pain or energy blocks. try and be aware of your being before the doctors start telling you what they think.

this was useful for me, because when i got to the hospital and the doctors started telling i was going to die or i wasn't going to make it, i KNEW i wasn't that sick. though yes, i had that same moment of panic, where i was trembling in a cold sweat and doing endless MRIs and CAT scans (i had three of my brain in one day) and i knew it was a bad idea but i was too scared to say no.

this is why you need to not be scared of death.

the reason is, when you're dead, you're dead. no worries. no stress. no aches. no painful treatments. no obnoxious relations (or teenaged children).

no cancer.

no one should frighten you into anything that way.

what you are scared of is having your quality of life affected. you should be scared of getting a treatment that doesn't work for you body or your kind of cancer. you should be scared of having a doctor who doesn't listen to your concerns or explain the details of your treatment in advance.

it's true. discovering that you have cancer, a real diagnosis, not a moment of hypochondria, is really scary. for a moment, you feel like you just fell off a horse. the wind is knocked out of you and your skin chills. you can't believe it's real.

but get ahold of yourself.

the diagnosis is not the end of the game. it isn't the end of the line for you. in fact, it's the opposite. because a major illness can shake you to the core and then force you to make the major changes your life needs to get to the next level.

you are intelligent, questioning, caring. value yourself and the form god gave you. there is a reason you are here.

don't give up on yourself because you're intimidated. no one knows yourself better than you.

it's all in how you take it.

so don't be afraid.
get the steering wheel in your hands.

don't be afraid of cancer

2010-01-29T15:21:00.000-08:00

as a ten year-old would tell you, there's no time to worry about dying. there's too much to laugh about. claire and rara have been joking in spanish, french, english and japanese.

and cancer? only when it gets in the way of you having fun.

i was just talking to my friend penney leyshon about my incredible experience with dr. gaynor today and she said, "ameena, you should write about not being afraid of cancer."

first of all, i should tell you that penney leyshon is an incredible psychic healer. and she's been travelling alongside me through this complicated healing trip.

http://penneyleyshon.com/

but what was incredible about dr gaynor was how he read me. he spoke to me like a psychic, reaching places in my past and my soul that i didn't know anyone knew existed.

sort of like that song, "killing me softly..." except he wasn't killing me.

got to get the ten year-olds to "when in rome" - hope it's appropriate. more on gaynor to come.

http://gaynoroncology.com

it's not a very good website, however. look for his books on www.amazon.com

don't believe it from me

2010-01-27T06:51:00.000-08:00

listen to doctor mercola.

stay away from sugar and corn syrup.

it's hard. even more so if you are a kid. EVERYTHING has corn syrup. even the labelled "natural" products.

also, agave and even honey - especially if you have cancer - are equally bad. glucose makes cancer tumors increase when injected into cancerous mice. this includes honey.

if you (like me) are absolute sugar addict and the cravings set in, try a little fresh fruit first.

whatever you do, don't have it straight up. in my case, one jelly bean can lead to the entire easter basket and a bad headache.

http://articles.mercola.com/sites/articles/archive/2010/01/26/Sugar-May-Be-Bad-But-This-Sweetener-Is-Far-More-Deadly-Part-2.aspx

home from chemo

2010-01-26T18:13:00.000-08:00

my doctor as usual was being all cagey about the chemo, the disease and the treatment plan.

it's frustrating because she is constantly changing the information she gives me.

i showed her the book i had on my cancer, trophoblastic disease, and she was dismissive. i asked her why my hands were turning black and she said, "oh, this kind of chemo could also make your tongue black."

i told her that i noticed that this part of my chemo - the outpatient session - was physically much harder than the in-hospital one. the nausea and the exhaustion was much worse, especially two days afterwards.

and she said, "oh yes, it would be. this is much harder. and the reason you feel so much worse two days later is because all the pre-meds we give you wear off in 72 hours."

i am wondering why my treatment is never explained to me unless i ask. no details. no advance warnings. it's a sort of shut-up-and-do-what-you're-told approach.

so then i told her about a few other oncologists i had spoken to, especially one i'd like to see who practices integrative oncology, working with vitamins, supplements and music therapy. i asked what she thought. she said, "oh, some people like him. some people don't."

anyway, soraya came with me and helped me drag myself home in a fog of nausea and spacey-ness from all the pre-meds.

lying like a zombie on the mat until zarina stamped in the front door in a temper and threw a tantrum that she was being grounded (on a school night?)and it was so unfair.

this eventually disintegrated into her telling me she hated me and wanted me out of her life and then walking out the door.

fortunately, she went to her safe haven, her dad's house. where he will tell me not to be so hard on her.

sasha and jahanara are still here calmly doing homework.

some more ginger, arnica on my bones - my white blood cell count is dangerously off, which accounts for the cold, i guess - and off to bed.

thanks for listening.

eyelashes and teenagers and drink

2010-01-25T13:52:00.000-08:00

on saturday morning, mary schook transformed my exhausted, alien eyes back into doe-like ones with the addition of false eyelashes, mascara, shadow and liner.

i was excited because sasha was having a surprise 17th birthday for one of her best friends. who is a lovely, willowy girl i've known since they were both 2 1/2.

i was allowing sasha to have the party in my currently-empty office as long as she promised me that there would be no drinking allowed. not least because i don't want to take responsibility for anyone's else drunk minors.

so i thought, at least i'll look pretty whilst chaperoning.

of course, in the end, the party got totally out of control. by 11 o'clock, i was so exhausted that i was huddled on the sofa wrapped in my coat, my eyelashes peeling off like caterpillars. i'd asked an ex, aaron, a 6'2" former navy seal, to come over and be the bouncer. but aaron wasn't prepared to pull too much authority on the kids. he was thrown out of the party by sasha.

and my chemo-limited vision and hearing were no match for the sneaky, totally inebriated kids who arrived with bottles and cans in tow.

in fact, every single house rule was broken and sasha spent all sunday mopping the floor.

i realize, having been a kid who was a bit of a nerdy intellectual (or i fancied myself such), i have no skills to deal with the super-sophisticated new york city cool kids. even less so when i can barely form sentences.

my own feeling is that teenagers should not drink. there is a legal drinking age and part of the reason it exists is that at 14 or 16, you lack wisdom, judgement and a sense of your own mortality. unsupervised drunk kids are likely to drink themselves into a stupor, do something dangerous or hurt someone else.

if you want to let your teenagers drink alcohol, try and be around while they do it. don't send them out on the street or onto the subway (where it seems a lot of well-heeled schoolboys attempt stupid tricks like hanging on the outside of the train).

i ended up spending monday morning talking to almost all the other parents, and a shrink who deals with adolescents to re-discover my compass.

all that to find out one thing.

as a mum, you need to listen to your intuition.

forget that whole guilt thing that they will lay on you: "you don't trust me, then how can i tell you the truth?" or "if you punish me, you will just make it worse. i'll want to do it more."

if you get the feeling your kid is lying, drunk or doing something she shouldn't, don't let her talk you out of it. even if your exhusband insists you are being unfair and "trying to control their lives." (by the way, that is part of the parental job description.) if you're not a sadist or a helicopter, if your kid needs to be reined in, and you love her, do what you have to.

you're probably right.

my body betrays me

2010-01-22T18:18:00.000-08:00

talking to a friend today about her cancer and thinking about why i was so irritated about what's happening.

i've been lucky.

after a low point in adolescence, my body has served me well. i'm energetic. i had three relatively easy pregnancies and births. i'm athletic and relatively well-proportioned. my weight is generally stable. i recover quickly from illnesses.

we have a good relationship. in exchange, i treat my bag of bones well. i eat healthy food, mostly vegetables, rarely meat. i go to bed early. i don't smoke or drink or use drugs.

until now. i seem to have a disease in which the cure is almost worse than the curse. the lasting effects of the chemotherapy and the threat of future cancers mean that i will live with it every day for the rest of my life.

so i will recover. that is for sure.

i could feel it in pilates today, how quickly my muscles kicked back in. i am fragile, slightly dizzy and a little spaced-out but my body remembered everything.

my human form is still vital. though my eyes are so swollen up as to be unrecognizable in the mirror as i exercise.

i will recover.

but my way of life and my body will never be the same.

beauty and the beast

2010-01-21T16:18:00.000-08:00

went to a real meeting today - with a lot of trepidation.

the jobs i've done since i got sick have all been emailed in and i wasn't sure if i was sufficiently civilized or lucid for polite company.

this morning, i put off getting dressed til the absolute last minute and then threw on a wooly chanel (my go-to for insecure moments) tunic and tights and a little woven prayer cap underneath my big furry hat because my hair is growing back in tiny little lines like a character from a charles schulz cartoon. maybe pig pen? someone whose hair all stands up straight.

so while i could not be the wonder woman and fix a computer glitch during the presentation - normally, my supermum fix-it powers kick in at moments like that - i did manage to speak in complete sentences and also get inspired to think of some cool stuff for the client.

but the whole time i kept wondering, how does it work for someone like me? what happens in the world of beauty when you turn totally skinny, lose your hair and have your eyes permanently puffy?

when you have cancer, even if it's on its way out, are you a living downer? would everyone want to avoid me?

the question is whether you tell people or not.

i mean, i have to tell them in meetings because i am almost bald. but if i've got my big hat on, do i tell people when i run into them in the hallway? i felt like i needed to tell people because i've fallen out of touch with everyone in the past few months.

so they wouldn't think i had just moved to bali (i wish).

and to also show that cancer isn't a death sentence. it's an imbalance, an illness that many people recover from and also one that can still allow you to live your normal life in the process.

i wanted to tell people so they could see that cancer is boring - but not oppressive.

you can be alive and thinking and going out

and writing

and coming up with good ideas (some related to commercial products :-)

even while you're kicking it.

chemo treatment 5.5

2010-01-20T07:03:00.000-08:00

last night in the hospital, Love brought me a roommate, a heavy woman in her late 60s with emphysema, lung cancer, legs that wouldn't move of their own volition, and all the scars and bruises and pain that come from treatment.

she was scared and confused and restless and i spent most of the evening stroking her head, holding her hand and reassuring her that her son or her caretaker would be coming soon.

so i gained a few minutes respite from feeling sorry for myself.

i also learned to step away when i needed to rest and to call for a nurse to take over, to insist that she needed someone to sit with her all night, not least so i could sleep.

two lessons. one (the easy one for me, usually) to put myself into perspective.
two (the hard one for me) to look after myself and put those needs first sometimes.

that said, the psychological effects of the hospital are awful.

everything makes me feel nauseated, fragile and debilitated (except for the sun streaming in the window like a smile).

the sharp scent of rubbing alcohol and purell; the hideous, faded cotton "gowns" that look like housecoats of mad old ladies from the 40s; the greenish, flickering fluorescent lights, the muddy yellow walls and the beige colored furniture; the beige woodframed frighteningly-mediocre macro photographs of flowers;

it all works together to make you powerless - along with grinning teams of doctors (with angry threats and insecurity bristling just beneath their jolly smiles) cheerfully skipping around my questions and patting me on the back about how well i am doing.

amazing how hospitals make you sick.

hospital again tomorrow

2010-01-18T19:58:00.000-08:00

i am so dreading the chemo tomorrow i've been nauseated all evening.

so tired but i can't sleep, can't read.

my mum's gone back to dc and i miss the help and the support. but i am also enjoying the quiet of one less person in the apartment and the return to a sort of routine.

i am so so tired of being sick. and so sad that my feeling good today will all be over for the next four days. four days of aches, nausea, flu-ish exhaustion, shooting pains in my neck and head and shoulders.

not sure that the cure isn't worse than the cancer.

oh, by the way, my number is 20.1 now. from 38.4 last time.

how much more can i take?

this is obviously a lesson in patience for me.

enormous changes at the last minute

2010-01-15T07:10:00.000-08:00

thanks to mary schook's previous work and ruba abu-nimah giving me a load of creme de la mer, the texture of skin doesn't look nearly that bad.

on the other hand, my skin has taken a sort of orangey-yellow cast and my eyes are totally sunken in and tired-looking almost all the time.

my eyelashes and most of my left eyebrow have fallen out or are falling out. losing them was making me sad but i'm getting over it.

here are a few of my immediate pieces of beauty advice to anyone with cancer or undergoing chemotherapy.

as an aside, unlike most of the cancer advice people give you, in this case, it doesn't matter what kind of cancer you have. it will work.

(most of time, when they say, eat reishi mushrooms at 6am or something like that, what they don't realize is that different therapies work for different cancers and different body types and immune systems. the most irritating thing about healing in general is that our bodies all different and react differently so who knows what will work?)

but this advice is really one size fits all.

ONE

drink a ton of water.

if they tell you to drink 2 to 3 liters of water daily, believe it.

do it.

basically, the chemo is cooking you from the inside. every part of your body is dehydrated and desperate for the same molecules of water. they need them to flush out the chemicals and to revive themselves.

drink

(the

water)

TWO

moisturize like crazy.

if you are a weirdo like me, you will notice immediately that the skin on your body has changed to that dry, papery skin of a very old person.

this is because you are dehydrated.

keep drinking the water and slather on moisturizer as much as you can.

previously, i was never a fan of creme de la mer because it was too much like crisco for me. thick and greasy. and it smells like nivea.

but post-chemo, i put it all over my face and also my scalp and my skin seems to drink it in. i LOVE it.

THREE

give up sugar.

especially white sugar.

it really is bad for you.

there is stuff that is still open for discussion, like grass-fed beef, like cheeses and yogurts, organic vs non.

but sugar causes inflammation. lots of people say cancer feeds on it and it makes tumors grow. i don't have the statistics on that.

what does seem clear is that sugar is hard on all your organs especially your liver and kidneys. those are the ones processing the fall-out from the chemo and fighting all the other toxins in your body.

you are reading a jelly-bean-addicted psycho here. i LOVE LOVE LOVE white sugar. i adore candy in almost every form. i am not a natural broccoli-eater. i can make myself eat cabbage and pretend i love it but i'd really prefer chocolate mousse.

so even if it's just out of vanity - knowing that sugar breaks down the collagen in your skin, so you will definitely age faster if you are eating it - give it up.

i am not going to argue with anyone about fruit or carrots or beets or maple syrup (unless it's to excess) but even agave nectar and high-fructose corn syrup are evil.

do not eat them if you are doing chemo.

or cut back as much as you can.

your face will thank you.

a missed opportunity

2010-01-14T18:43:00.000-08:00

yesterday, i felt so bad that i couldn't even get out of bed, let alone type about it.

a combination of incredible nausea, shooting pains in my nerves, exhaustion and flu-type achyness all over that made me lie in bed sobbing and feeling pathetically sorry for myself.

i could barely make it to the end of the room to watch some tv. and as soon as the movie was over i crawled back into bed.

today, i woke up feeling light years better. still achy but not nauseated or immobilized. walked with sasha to get her braces off. came home and drove her to school. went through the holland tunnel to get gas. came home and wrote my stuff for bulgari.

then my friend mira kamdar dropped in and i unearthed some semblance of intellectual thought from the far reaches of my slumbering brain. and - along with mira - i managed to help rara with homework while having a conversation!

all this may not impress you but since starting chemo, mental multitasking has totally escaped me. along with finishing sentences. or remembering what we were talking about midway through a discussion.

then sasha came home (now frighteningly beautiful and braces-free) and mira's daughter anjali and zarina came home. then zette dropped in.

and all of sudden, the day was over and i was trying to get rara to bed.

more tomorrow. on the industry of alternative cancer care. it is just scary the number of "cures" that exist. and the great majority involve sinking large sums of money into supplements.

my current question: www.lifemelhoney.com

anyone know about it?

amazons of nyc: it suddenly hit me

2010-01-12T10:41:00.000-08:00

amazons of nyc: it suddenly hit me

it suddenly hit me

2010-01-12T10:21:00.000-08:00

i woke up relatively engergized but still slightly nauseated.

all sorts of plans, ate lunch, made phone calls, bought vitamins online. my mum kindly left the apartment so i can hear myself think.

tried to call my doctor to find out my hcg levels.

and then i took a shower and suddenly felt really really tired and sick. horrible headache. nausea.

going back to bed with a bottle of water. cheered up by reading the cancer blog on the ny times. http://well.blogs.nytimes.com/2010/01/12/feeling-like-myself-again-after-cancer/?scp=2&sq=cancer&st=cse"

post-chemo

2010-01-11T18:52:00.000-08:00

ok.
very relieved it's over.

super-tired right now. nauseated. and irritated because i had a fledging nurse and she jabbed me a few times before she got the right vein and ended up bruising one really badly as she pulled the iv in and out. my veins are such a commodity right now, it's a drag when a good one gets ruined.

my doctor was super-apologetic and nervous. she was trembling a bit when she walked into her surgery. and at one point, her eyes filled with tears and i felt bad for her.

i confronted her with a load of questions and research and she agreed to reduce and eventually phase out the steroids. but when the questions got too close, she admitted she had no answers. "this is an imperfect process, but it's all we have now."

she had no real evidence that if i quit chemo i would die.

but here's one thing i've discovered - once you start chemo, you kill your body's own defenses - it's like antibiotics. so if you quit while there is the slightest bit of cancer or infection remaining, your body can no longer fight it off.

also, it starts by suppressing the disease. as it kills, it suppresses and suppresses - a bit like a plunger - with the goal that eventually, it will push it all down the drain.

but if you pull it up too fast, the fear is that the disease will be supercharged and take over again.

if the cancer/infection allows you to wait a few days to take stock of the situation, think twice before you start chemo or antiobiotics. look into serious options - ideally, supervised by someone who understands your illness (don't just go into the desert and pray, unless you are highly evolved) - before you get sucked into the machinery of the hospital.

anyway, i am tired tired tired again. the lack of steroids did wreck me, but the ginger worked well on the nausea.

and my friend shandana durrani came over to hang out with the amazons. she likes them and they like her. makes me feel relieved.

bed now.

sunday

2010-01-10T17:06:00.000-08:00

not sure what happened at james' this weekend but the girls came home calm and well-behaved.

sasha set the dining table on one request. she also filled the dishwasher. and rara wiped down all the placemats and put them away. zarina washed the pans and showed rara how to scrub out the sink with only one episode of her sitting on rara and rara jumping her when she turned around (in retribution).

i cut rara's fringe and it came out (uneventfully) well.

my mum is quietly working on an impossible 500-piece puzzle.

prayer? meditation? whatever. the calm before the storm tomorrow morning and i am really appreciating it.

i am so nervous about dealing with dr. aghajanian tomorrow.

for tonight, some peace.

filograstim

2010-01-09T17:27:00.001-08:00

i have to give myself these shots once a day for 4 days.

and there is something really counterintuitive about sticking a needle in your own stomach. i don't know how drug addicts, self-mutilators or suicide attemptors manage to do that stuff regularly.

that instant just before you stick yourself is always really tough. i hesitate. for a second, just before the needle breaks the skin, i stop. i almost can't do it.

then i manage.

it's like all those other counterintuitive things i guess, drinking coffee, smoking cigarettes, drinking alcohol or taking drugs. you get used to it.

weird.

down time

2010-01-09T16:39:00.000-08:00

nora and zette came over today. i had the pleasure of a long chat with girlfriends, a lot (for the moment, anyway) of energy, a chance to take stock of my situation and laugh at the absurdity.

we went out to a late, overpriced lunch at bubby's and the food was suitably greasy and i felt like a normal person again.

sometimes the weight of being unwell and the constant surveillance of people trying to look after me and predict my every move - especially in a tiny apartment that offers zero privacy - can be so overwhelming i can't see my way out of it.

it's true, my life is psycho-crazy and i am a tinderbox for explosive situations.

despite that, i am happy and pretty much comfortable with my lot in life.
(my dreaded chemo and the big argument with my doctor on monday morning is lurking in the back of my head all along. i swear i feel like throwing up just THINKING about chemo)

but i am sure it will all be ok.

now to put on my fuzzy patagonia sweatpants and a big sweatshirt and to turn on flight of the conchords or something.

full circle

2010-01-08T13:08:00.000-08:00

spent most of the day chasing doctors and trying to find some alternative to the chemo.

i was hoping that at least one person i'd talk to would say, stop it now. instead, i found a load of practitioners who couldn't give me an appointment til march.

and a couple of doctors who told me to ride out the chemo for 2 more weeks and then check out. but to take a ton of anti-oxidants at the same time.

the one piece of good news - eat lychees. apparently very high in protein and anti-oxidants to counteract the chemo.

grr.

back to chemo at 9:30am on monday.

light and air

2010-01-07T14:22:00.000-08:00

heard crashing on my constantly leaking skylight this morning and looked up to see julius (our sort-of in-house electrician and all-around handyman) trying to hop around the glass with huge pieces of wood.

turns out the drainpipe from the roof is clogged with ice and leaves and as it melts, it's crashing down onto the skylight, threatening to break through the glass. (since i was stuck at home all the holidays, i kept thinking we were having hailstorms.)

in order to protect my skylight as julius and his right-hand man willis (that's his real name) work, they've put sheets of wood over the panes. this means that my entire apartment is shrouded in darkness.

woke up still tired and nauseated this morning - after the amazons went to school - i went back to bed and tried to sleep in-between endless phone calls of people calling to see how i am.

the chemo nurse joked that people come home from chemo and scrub their houses because they're so pumped up on steroids and then, the day after, when it wears off, they crash hard and can't move.

so that's how my morning started. with me and my skylight crashing. in an ambitious moment, i'd made a lunch date with an occasional colleague, a very bright and more ambitious industrial designer, and i was dreading it. i am still slightly scared to be out in public. bald, skinny, weak, nauseated. my eyes permanently red. my skin permanently green. i am not sure i can manage coherent conversation.

at home, i can be a pathetic invalid - but out on the street or in a restaurant - i'd have to pull my own weight like a real person. it's one thing to be in the safe and comforting company of close friends and family members and quite another to be with someone you know on a professional level. i was putting myself in a situation where i should sound lucid and capable. i know i was once.

so i bravely took a shower and got dressed. like a normal person, rather than a sick person on my way to a doctor's appointment, which, for the past few months, has been one of the few reasons i've left the house.

so stephen rang the doorbell and out we went on to the street.

the minute the air and noise and light hit me, i suddenly remembered who i was again.

a somewhat intelligent, quick-to-laugh and dynamic person.

not a sickly, scrawny cancer victim... or just temporarily.

it was almost as refreshing as a swim. i emerged energized and alive.

i have GOT to get out more.

no sleep for the wicked

2010-01-06T07:40:00.000-08:00

the remains of the steroids - i took a couple before i realized which ones they were and the nurse had left the room

which meant i was awake all night and refusing to take ambien because my body is still shaking from the all chemo drugs and the intense battle that dragged on until morning with all the doctors.

now i am so exhausted i can't do anything but still so wired.

have got to get on the phone and get out of this appointment my obnoxious doctor made with the psychiatrist for me. please. i spoke to THREE yesterday. along with 2 social workers. they all said i made sense.

at this point, she should see a psychiatrist to figure out why she feels compelled to bully and use scare tactics with her patients rather than discussing their concerns.

perhaps she is one of those who feels cancer is a punishment from god and this is purgatory. one of the social workers suggested this theory.

my particular cancer is one that tends to affect young girls who probably need some strong arm-ing to continue. she is the authority in new york city on this cancer and is not used to being questioned. a nurse suggested it was frustration and irritation on her part that i did not immediately accept her rules.

but still, she's got two young sons, imagine she uses this type of bullying to keep them in line when they're teenagers. that will backfire for sure.

your kids' friends

2010-01-05T14:29:00.000-08:00

they say you can't really control what your kids will and will not do - in the end, they are most influenced by their peers.

all you can attempt to control is their peer group.

so the question is - if your kid has taken up with a really questionable kid as her new best friend, thus has moved into a group of really unpleasant kids - how do you re-direct your kid?

i can't really leave nyc. if i forbid the friendship, it becomes - like romeo and juliet - still more compelling.

HELP.

so i did it

2010-01-05T12:47:00.000-08:00

chemo 3.5 - i have finally gotten them to give me a number to the end of the chemo and to agree to stop giving me steroids if i can deal with the nausea.

i got scared and bullied into believing that i needed this treatment. i decided to let them give to me after the nurses came and discussed side effects in great detail. the problem is that they have nothing - no evidence or statistics, even anecdotally that any woman they have treated has left the chemo treatment and died.

why? because no one has left the treatment at memorial sloan kettering.

as my doctor - who is a woman, i should add - said, the only people she's seen who have died of this cancer were people who had stopped treatment (elsewhere, in other hospitals) because they were too poor to afford it and by the time she got to them, the cancer had developed a resistance to the drugs and they were unable to cure it using other drugs.

however, while this treatment - EMA (etoposide, methotrexate and actinomycin) once a week and CO (cyclophosphamide and vincristine) the second week is successful 90-95% in curing the cancer, only 79-72% of the people (in the studies i've read from the charing cross hospital in london) survive because 20% die from secondary infections developed due to the chemotherapy.

anyway, i am less exhausted from the treatment than i am from arguing with nurses, doctors, psychiatrists, social workers and of course, my family.

now drinking green juice, taking vitamin c, d, flax seed oil and co-q 10 in the hopes of protecting the cells that remain alive.

fight the powers that be

2010-01-04T08:14:00.000-08:00

in my hospital bed, refusing chemo. nurses come in and out and ask what's up and i keep saying, "everything's fine. but i'm not having any more chemo. i've had enough."

so my dad's here, backing me up, along with soraya, my sis-in-law, who is politely willing to go along with whatever idiotic thing i say. (this is where she's spending her birthday, poor thing)

basically, i'd like further testing before they shoot any more battery acid, dry cleaning fluid or steroids into my body. just spent a little time reading about the side effects - immediate and future - and i am freaked out.

steroids will, later in life, give me weak brittle bones. the chemo increases my chances of later cancers by 10%, the specific drugs i am getting can cause kidney tumors, leukemia and that's just the good stuff.

i've got mouth sores, candida, digestive issues, eyes are permanently red and swollen and the lashes are falling out.

and they all keep telling me i am the healthiest chemo patient they have!

i will keep you updated.

family-friendly comedy

2010-01-01T20:19:00.000-08:00

my mum made a ton of lamb chops, salad, roast potatoes, tabouleh, pasta and a LOT of pie (especially for my brother) and we had a noisy, messy, happy relaxed new year's day dinner.

it was the perfect start to 2010. i wish i'd thought of that while it was happening.

in fact, i am amazed at how many really momentous events i've experienced while not really being there.

yes, as oprah or dr phil or one of those inspiring people would say, i was not "in the moment." i was dreading my chemo on monday - i swear my veins start hurting in advance. nerves start shorting out in my neck and head. i even feel a bit sick. also, i normally get my toxins on friday.

and i was also still winding down from my crazy hectic new year's eve.

made a huge number of mistakes. let sasha host a new year's eve party in the office. i asked her for all sorts of organizational details in advance - a guest list, someone to act as bouncer, a strict no-alcohol and no-smoking policy and only 15 people in the space at a time.

of course, it all went out the window - the party had about 30 kids crammed in there by 10:30, with very little controls on who went in and out and 15 more out on the sidewalk smoking (at least, they weren't smoking inside) and drinking bottles of beer out of paperbags.

fortunately, my mum - having been a high school art teacher in her past - stepped up the pressure and kicked out a bunch of kids who weren't actually friends and told people off for drinking and by 1:30, we shut the party down.

next, zarina spent the night at a friend's house, where the mum had told me she would be home but it turned out she was not, her friends provided drinks and zarina ended up "sick" being picked up by dad after midnight.

thus the day today was spent with my ex calling/texting/emailing to tell me how i was too strict with my daughters thus driving them to drink and inequity

and zarina was texting to say how much she hated me.

and my mum telling me how i was so lax with them that she could guarantee they would all come to a sorry end and if only i had listened to her growing up, i wouldn't be such a loser.

and i found myself standing under the shower like i had this fall, thinking, "i just want to dissolve. i don't want to be here any more."

so i spent the rest of the day fighting with myself. trying to find something of value in my foggy melting soul that seemed worth saving because last time i wanted to check out, i got cancer.

perhaps i am a sucky mum - and i haven't worked in months so god knows if i'm any good at that - but i don't know if i want to be told it. i am good at battering my ego myself.

if i don't remember that there is something good about me in the world then i won't choose to be here.

i was worried sick about my daughters and searching for why i should still be here

and i missed the party all together.

except for the video.

sasha

2009-12-30T20:02:00.000-08:00

had a beautiful 24 hours with sasha.

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

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

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

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

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

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

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

co-parenting in the time of cholera

2009-12-29T09:41:00.000-08:00

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

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

it is almost impossible.

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

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

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

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

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

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

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

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

augh.

oh well

2009-12-28T18:49:00.001-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

the day after

2009-12-27T07:59:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

so here's what i got for christmas:

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

also,

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

1 cancer that has not spread anywhere in my body and is highly curable

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

a nice smile.

christmas: the battle between selfishness and generosity

2009-12-27T06:09:00.000-08:00

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

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

and thrilled with the gifts they received

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

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

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

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

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

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

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

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

the night before christmas, pt 2

2009-12-24T14:46:00.000-08:00

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

and how the main course will be prepared.

by my mum, thank god.

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

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

the night before christmas

2009-12-24T12:06:00.000-08:00

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

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

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

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

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

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

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

he bought a 6-pound boneless rib eye roast.

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

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

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

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

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

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

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

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

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

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

four hours left til the big christmas eve dinner.

good day, sunshine!

2009-12-23T08:51:00.000-08:00

HURRAY! day 3 after chemo and i feel fine.

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

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

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

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

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

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

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

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

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

merry merry merry merry

great

2009-12-22T19:45:00.001-08:00

all the ads running down my sidebar are about cancer.

chemo side-effects, cancer treatments.

and honestly, the novelty has worn off.

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

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

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

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

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

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

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

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

yuck

2009-12-20T15:43:00.001-08:00

still feeling nauseated and tired today.

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

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

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

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

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

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

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

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

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

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

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

resting after chemo

2009-12-19T19:12:00.000-08:00

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

"oh my gosh, it's miraculous!"

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

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

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

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

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

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

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

anyway, am exhausted just now so more tomorrow.

when mother was away on business

2009-12-17T11:37:00.000-08:00

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

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

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

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

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

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

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

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

cancer is so boring

2009-12-16T08:00:00.001-08:00

i am tired of being sick.

i am SO over it.

bored of cancer and being tired.

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

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

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

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

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

but just for a little while.

now i am ready to be myself again.

i must be feeling better.

cancer diaries- more FAQ about hair

2009-12-15T19:03:00.000-08:00

your hair falls out from chemo.

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

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

and all the pleasures of a brazilian wax without the pain

are really winning out.

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

but i am enjoying both the shock and the androgyny.

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

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

people are suggesting hats, scarves, earrings.

whereas i am enjoying the purity and simplicity of shape.

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

cancer diaries

2009-12-13T07:29:00.000-08:00

"make an effort"

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

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

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

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

even if you just plan to go back to bed.

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

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

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

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

you are getting better all the time.

anger management

2009-12-12T09:48:00.000-08:00

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

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

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

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

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

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

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

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

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

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

(interestingly, he'd had cancer as well)

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

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

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

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

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

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

you just make YOURSELF sick.

what's a uterus between friends?

2009-12-09T05:50:00.000-08:00

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

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

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

look at this:

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

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

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

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

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

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

here's something i found:

FACT: Women report a loss of physical sexual sensation after hysterectomy.

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

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

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

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

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

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

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

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

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

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

cancer patients FAQs

2009-12-07T13:04:00.000-08:00

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

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

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

could you please just make some jokes about it?

which brings us to

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

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

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

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

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

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

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

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

maybe the hugging is a bad idea to begin with.

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

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

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

on a less amusing note:

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

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

then there is radiation.

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

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

she did wake up

2009-11-15T09:16:00.000-08:00

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

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

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

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

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

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

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

i truly believe it will. it will be ok.

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

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

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

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

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

it will be good.

past lives

2009-11-15T06:20:00.000-08:00

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

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

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

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

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

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

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

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

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

this morning - these days - i miss the babies.

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

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

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

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

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

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

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

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

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

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

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

and eventually, i stopped crying.

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

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

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

amazons of nyc

why the c-word?

the c-word part 2 or what to expect when you expect to be hospitalized

the c-word or ten pieces of advice

luck and gratitude

Each one of my particles called out with its own voice, "All praise be to God and thanksgiving!"— Jalaluddin Rumi

might is right

the end of childhood

housing works

cocktail waitresses and mothers

if you're happy and you don't know it...

object memory

memories

excuse the crazy hair

live for today

30 days of beaucell!

day 26, 27, 29

day 18

day 17 - you looked fantastic!

two weeks and 1 day

spacey sunday

day 4

day 2.5

testing, testing

mothers with children

ameena & the amazons

wonderwomen

eraser head

just as i suspected

ameena in medical-land

RIP Giovanni Russo

the all-access pass has been revoked

the amazon diaries

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

cloak of invisiblity

beauty and all its forms

lucky lucky lucky

two weeks of work and 14 laps

phase three: time to get moving

thanks a lot

cancer phase two

ultrasound & blood tests

on being disabled

eyelashes

peaks and valleys

magical mystery tour

is that all they needed?

oh and one more thing

nausea

why can i never post links

in the way life does

adolescence on both ends

don't be afraid of death or cancer

don't be afraid of cancer

don't believe it from me

home from chemo

eyelashes and teenagers and drink

my body betrays me

beauty and the beast

chemo treatment 5.5

hospital again tomorrow

enormous changes at the last minute

a missed opportunity

amazons of nyc: it suddenly hit me

it suddenly hit me

post-chemo

sunday

filograstim

down time

full circle

light and air

no sleep for the wicked

your kids' friends

so i did it

fight the powers that be

family-friendly comedy

sasha

co-parenting in the time of cholera

oh well

the day after

Each one of my particles called out with its own voice,
"All praise be to God and thanksgiving!"

— Jalaluddin Rumi