The C-Word: How to Say No

I am always asked this question.

When faced with the enormous weight of the medical establishment and the cancer industry, along with the battalions of family members and friends who told me I was a selfish, unrealistic, irresponsible mother with a death wish, how did I say no?

How do you make a decision based on the quiet voice of your intuition when you're scared out of your skin? And when almost every person of repute is telling you that your intuition might be deadly wrong.

How do you do what you feel in your gut is right for you and your body?

This is critical.

Toddlers say, "No" often and with conviction. "No green beans!" "No shoes!" It's simple.

Teenagers do it by rolling over and going back to sleep. Or ignoring their parents' text messages. It's all about creating a separate identity and learning to make your own boundaries. It's a crucial developmental step.

Eventually, though, as we grow up, we all learn the value of saying, "Yes." Or at least, "Oh, all right," most of the time. It's a necessary part of living in society. We get to work when we are told to be there, we do the laundry for the whole family, make dinner when we're exhausted.

The problem is that we - especially women - often forget that we need to assert our independence sometimes. Not just for the brief rush of power (and ensuing guilt) of doing what we want, but as a sort of self-protection. There is only so much you can do and if you don't learn to protect yourself, the world will eat you up.

I am not suggesting that the world is malicious, just that the people who love you most, who care most about you, sometimes don't realize that you are a human yourself who also has a responsibility to herself. That sometimes you need to tell them, "No."

When you are sick, this can get even harder.

If you feel like your illness might respond better to a certain diet, let's say your own version of Unger's Clean or Gerson therapy or any of the variations and options out there, you need to protect yourself from the people who love you and may have stayed up all night baking your favorite brownies or frying samosas. If you are weak and tired and you don't even really like brussel sprouts, but you somehow know that's what you need, you need to say, "No, thank you," to the person who brought cupcakes and the doctor who says, "What you eat doesn't really matter anyway."

For the hospital, here is your first bit of ammunition. In the land of the invalids, the squeaky wheel gets gets the oil. Statistically, patients who complain and demand attention get better care - and recover faster. The more active you are in the process, the better your care will be - mainly because you've lived in your body and you know it better than any doctor ever could. I'm not suggesting you be nasty and mean to anyone - and especially not the nurses because they really work hard - but that you stick to what you believe.  Even doctors and nurses, when they stop to think, believe this.

The uncomplaining patient who quietly does what she's told tends to be forgotten in the rush. If you have unpleasant symptoms or side-effects and you don't demand that your doctor address them in some way, you run the risk of hurting yourself in the long run. The human body reacts differently to different drugs as well as different illnesses. It's possible that something that seems unimportant may turn out to be something serious.

That's why I suggest you listen to yourself and your body. Trust your intuition.

When you are sick, vulnerable, frightened or even just intimidated, that is the time to say, "No," and take your power back. No, I don't want cortisteroids. No, I don't want a medical student to give me spinal tap, I'd rather have someone with years of experience. No, I can't walk there, I want a wheelchair. No, I don't want a wheelchair, I'd rather walk myself.

Even if every single person tells you that acupuncture or prayer or avoiding surgery or chemotherapy or radiation is a stupid thing to do, if you feel like something is not working for you, if you get a sinking feeling as you start do it, say, "No." (Interestingly, my daughters never question my convictions).

Remember that you can. There is a patient's bill of rights that allows you to refuse any treatment that you don't feel is benefitting you. It means that your doctors need to explain what they are doing and why. Just because something has "always been done that way" or because something is the "standard protocol" doesn't mean it always works or it can't be improved upon.

In my case, I knew too many people who had suffered from the side-effects of chemotherapy and radiation. The cancer was defeated, but with many of my friends, it came roaring back in four or five years because the person's natural immune system was so decimated by the chemo. I've known people who were killed by the side effects of chemotherapy and radiation but I never met anyone who was killed by natural medicine.

While I am a big proponent of natural healing methods, there is a lot to be said for your own state of mind. If you really have faith in whatever method you are using to get well, it is likely to work. If you have your doubts, don't do it.

For me, I tried psychic healers, massage and cranial-sacro therapists, acupuncturists, integrative oncologists, reiki healers, brennan method healers, nutritionists, and hypnotists. I chose them based on positive recommendations from others. If something felt good - and I found research supporting it - I kept doing it. If it didn't feel like it was doing me good or I didn't respond to the energy of the person, I stopped. I really worked on not being intimidated by either the New Age machinery or the medical industry.

Cancer and other life-threatening ailments are big business and too many people are scared or intimidated into spending a lot of money on treatments that don't work for them. Say, "No."

Not to be too trite but in Legally Blonde Two, Elle Woods uses a disappointing haircolor as a metaphor:

Sometimes you realize that part of the reason you got sick was that you didn't learn how to say, "No" enough. No, I can't drive you there. No, I can't keep the kids this weekend so you and your girlfriend can go to a bed and breakfast. No, I can't cover that bill. No, you can't come have your lunch at my house just because you're in the neighborhood. 

Years ago, my mother taught me the beginnings of saying no to authorities. "Well, the recipe calls for three cans of chicken broth, but I made some chicken stock myself so I will use that." Or "The doctor told me to take this, but it's making me feel sick, so I'm going to throw them away and call him."

Start small. But work on it. 

It's not always nice to say no to the people who care about you. But it's better to be nice to yourself some time.

When I finally told my oncologist I would not do any more chemotherapy despite her recommendations, she said, "You'll be dead in 12 weeks."

When I told the psychiatrists who were sent to counsel me that there were other ways to cure cancer, they laughed and said, "Those are fairy stories."

That was two years' ago. (That doesn't mean I might not have a relapse anyway because five years is the mark, but I've enjoyed the last two years at full steam).

Be brave.

Say No.

It could save your life.

the stuff you hate

why is it that so often the stuff you hate doing - like getting out of bed to jump into a freezing cold pool, or eating a bowl of broccoli instead of banana bread, or dropping off the kids at school in the morning (or picking them up in the afternoon) - ends up making you feel so good? quite often, as soon as you've won the battle against inertia and gotten warmed up enough that the water starts to feel comfortable, you actually ENJOY it.

i swear i am eating broccoli right now. in my bathing suit, just about to go to the pool. see?

for years, my exhusband picked up the amazons in the morning and dropped them off at school. then, for reasons he will explain, somehow related to boundaries or something, he told them he would not.

so i took over. after i drag myself out of bed, rush them through breakfast and then grouchily get them into the minivan, i discover that i love the anticipation humming through the car. i sometimes ask them about their classes. we take stock of what was forgotten at home and how to deal with it. i hear about the plans for the afternoon. if we pick up a couple of their friends along the way, i eavesdrop on their gossip and get a sense of the temperature of the moment. there are good reasons why they should be more responsible and get there themselves - and some days i force them to.  90% of the time, i take them.

then when we get to school, if i can get a parking spot, i walk them in. mainly for one reason: so i can walk out into the stream of kids coming in.

the best thing about the united nations international school in nyc - apart from it being a vast range of cultures and races - is that it goes from kindergarten to twelfth-grade. i get to see the kindergarten's wide-open faces as they skip into school under their enormous, colorful backpacks. i love that so often, they still want to hold a parent's hand. i get to see the toddler siblings running and tripping, looking adoringly at their big brothers or sisters. the junior schoolers on their scooters or dressed in costumes for a class event. the middle-schoolers proudly balancing projects, dioramas and posters and boxes of cupcakes, as they march in with a sense of purpose. they feel so grown-up, they own the school now and they know where they are going.

and then those bleary-eyed teenagers, the girls still awkward in occasional heels and those tiny tiny shorts and skirts, dripping with make-up (they have to start somewhere!) the boys, still just boys, their faces sometimes red and smarting from the occasional shave, and in their big men's bodies that they don't know what to do with. even if it's spring, there's a bit of chill in the morning air, because the day is just beginning.

sometimes, i just start laughing to myself because i was once a kindergartener, a fourth-grader, a thirteen year-old and a high school senior. i can see myself and the amazons in every one of them.

don't you remember holding the hand of your first-grader and looking with terror at those enormous, threatening adolescents and wondering how yours would ever make it? and now, looking at those upper schoolers and realizing that they are just as vulnerable and fragile as the little kids.

because it's u.n.i.s., they are often speaking different languages and wearing vastly different clothes (until they turn into teenagers). sarah kay, the brilliant young performance poet, was a u.n.i.s. student. so was ishmael beah, the child soldier who wrote "a long way home," and sarah jones, the actor who can be 15 different nationalities consecutively in her one-woman show and john zorn, the experimental musician.

because it's u.n.i.s, the school guards and teachers have seen the kids go from bright-eyed five year-olds to defiant adolescents and they don't let them get away with anything. the authorities watch them walk in with a sense of care and discipline as well as affection. one guard i've known for 14 years said to me almost bursting with pride, "look at those kids, they are all happy to be here!" because it's u.n.i.s., the kids seem to walk in smiling - even the upper schoolers with their intense academic pressures and clear lack of sleep - and the excitement of the day to come is almost palpable.

when i get back into my car, i'm smiling too. i'm exhilarated by the optimism. i have perspective - that irritating job is just a job, the traffic and the weather will be different tomorrow.

 like finishing the broccoli and moving on to kale (i REALLY am right now), i'm energized and almost euphoric. it's a meditation in itself. how can anyone feel bad with all those smiling kids promising you a better world?

in my mind, the best way to stay healthy and happy is to stay engaged. to revel in the spirit of others and stay buoyant and purposeful.

you're here because they need you here. WE need you here. you need their energy and positivity as much as they need yours.

muslims are constantly told to be generous, that anything you give away, God will repay ten-fold. i believe that includes your energy. it's an effort but it pays off in a big way. every faith tells us that.

we're all in this together, that's what dropping the amazons off at school makes me remember. we're all on the same path.

that's why the stuff we hate to do is quite often the most crucial.

off to immerse myself in cold water! (lap swimming when i really would rather have another cup of tea, remember?)

The C-Word - Love and Cancer

I was at a book reading recently, chatting up a woman about all my book ideas about cancer, being a single Muslim mother in Tribeca (it goes on and on). The woman is an editor so it seemed like an opportunity. Been out of the literary world for so long that I am grasping at any straws I imagine. Now, instead looking for possible third husbands at events, I hunt down anyone who has anything to do with writing. I hope that somehow, my story will seduce them. People who have nothing to do with books seem fascinated, anyway.

She told me about a novel that everyone was talking about, [SIC], written by Joshua Cody. What she found fascinating, she said, was that he was so interested in sex. His book is a raunchy and musical ride through his romantic and occasionally drug-addled adventures whilst undergoing a very difficult treatment.

Reading more about the book – I am sorry to say I haven’t read it entirely yet - I find myself both cowed by the beauty and poetry of his writing and shocked by the sheer nakedness of it. He writes about his experiences vividly.

My own version of cancer seems tame and predictable in his shadow – he sneers at the pastel-covered cancer memoir genre: diagnosis, realization that life is wonderful, and eventually moving to a little cabin in Vermont . I would inspire only disdain. His is a dangerous, vicious, thrilling book. All the things I once thought I was. Now I’ve unwittingly fallen into the standard cancer-memoir-protocol though I’ve never read one. (Albeit with no cabin in Vermont. I am still in my leaky, garage of an apartment in Tribeca).

But I find myself relating to his book in another way. If nothing else, when you are single when you have cancer, you long to have someone chronicle the transformation of your body. In the same way that when you are pregnant, your body bloats and ripens and turns into another beast entirely, your body when you have cancer, morphs and betrays your expectations again.

It is both frightening and beautiful, in the way that a Francis Bacon painting is - a beautiful ode to the human form, even in its most grotesque condition. While having chemo, one’s skin turns pale. At times, blue, at times, mottled with red spots. The flesh seems to fall off the bones. And the bones, those bones, become so sharp and apparent. You lose your hair – and people forget – but that means ALL your hair, on every inch of your body. There is something alien about the body so hairless and pale, I wanted to take pictures to explore the strangeness.

In my case, my fingers and tongue took on a blackish tint as if stained with ink. I had tiny, burning sores on my cheeks and wide swaths of little blisters on my ribs, like stripes. I think about the woman in the cancer support group in Fight Club. Bald and wasting away, she was dying to find a one-night stand before she left the world. When I first attempted the occasional date again, not long after I stopped treatment, a guy told me I reminded him of her. I protested, I was so mild-mannered – but the desperation and loneliness must have been obvious.

My cheeks and eyes were sunken and my lashless eyelids were burning and swollen. My eyes stayed bloodshot for months afterwards. While I didn’t approach anyone, I longed for a warm body in the bed beside me. To be held and kissed by a being still surging with life, still pliant with flesh. I felt like a succubus, yearning to feel someone else’s life force inside me.

Perhaps, though, because I refused the steroids and tried to keep up with Pilates, I never had the adrenaline-fueled energy to roam the streets at night or to go to parties and bars, like the character in [SIC]. I generally was in bed by 9, usually with Rara, who was just 10 years old and frightened, wrapped around me like a scarf and my mother sleeping fitfully on the sofa, a few feet away.

And then of course, there is the movie, 50/50. That very funny Seth Rogan comedy about a young guy (played Joseph Gordon-Levitt) who gets cancer. http://www.telegraph.co.uk/culture/film/starsandstories/8824832/Joseph-Gordon-Levitt-How-I-made-cancer-funny.html Since his insane girlfriend cheats on him, he is forced to go to bars with his buddy who uses his friend’s cancer as a pick-up line.

This is where the cancer experience of women and men parts ways. The line, as everyone knows, would bomb. Basically, women (not all, but most) are hardwired to want to take care of people. A woman will sleep with a man because she feels sorry for him. A man? Not often.

The statistics are something like this: three out of four men leave their wives/partners within a year of their cancer diagnosis. http://www.politicsdaily.com/2009/05/07/marriage-and-cancer-a-fairy-tale-it-aint/ A woman is six times more likely to be separated or divorced after a cancer or MS diagnosis. http://www.sciencedaily.com/releases/2009/11/091110105401.html

While the narrator in [SIC] had an encounter with a fellow cancer patient, she was an exmodel. And even then, she didn’t come looking great.

For the most part, if you are a woman, telling a potential suitor you have cancer (or even HAD cancer) is akin to telling him you’re a leper.

Add to that, three very tough and fashion-fascist daughters, very involved parents, complicated exhusbands and the disastrous ruins of my financial life post-cancer and mid-recession; and almost anyone I met would run screaming in the other direction.

I did have one date, not long after the chemo finished. I did my best to ice my eyes and tried to use make-up to make up for the pallor and lack of hair, eyebrows and eyelashes. Upon shaking my boney hand, he looked pale himself. He tried to squirm out so quickly. He had barely received his order before he looked at cellphone and remembered another appointment in Williamsburg that he was already late for.

Perhaps that’s why I watched the first season of “The Big C” with such satisfaction. Laura Linney chose to simply live with her cancer. She chose to enjoy the languid pleasures of summer without disclosing it and live as if every day was her last. Luckily for her, her cancer moved slowly enough to allow her to drag it out.

Perhaps that’s why, only months after I finished treatments, I fell head over heels for a sweet 27 year-old.

Now that I am well, possibly temporarily, but I like to believe, at least long enough to see my daughters out of college. I find myself longing for someone who knows my history. Who can appreciate the transformations of my life and body and appreciate, with satisfaction and understanding, where I am.

The same way in which, you call your old friends after you get run a marathon or lose 10 pounds, you want to someone who can really tell you how far you’ve come. Someone who recognizes the “you” in your new form. Someone who has patience and gentleness with your kids.

No house in Vermont yet. No new love story. Or nothing with legs. Despite that, as it turns out, I am still the cliché. Hopeful and optimistic. Looking at the life surging through the plants and animals and humans around me with awe.

Of course, there are times, when life hits me in the head so hard, I wish I’d had a ticket out of here. The material world can be harsh when you start slipping. People get tired of someone who goes on struggling. I get tired of it myself.

But on a strangely spring day in the middle of February, I am very grateful to be around for just one more.

the c-word or ten pieces of advice

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 (rather, when i was diagnosed, i had black spots in my brain and my lungs, that showed the cancer had spread. they receded. i put that down to giving up sugar, caffeine and animal products as soon as i was diagnosed, though at first the cancer seemed to be in my brain, it either receded or it wasn't there to begin with) and the tumor shrank 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, wheat, rice), 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 $1700 for a large). there are a lot of places to buy them online, 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.

they are now finding that high fevers kill cancer cells. in japan, studies showed that the far infrared heat from the mat simulated a fever and activated an immune cell, a lymphocyte called CD8+ cytotoxic T-cell, to destroy infected cells. using it twice a day at the highest setting killed ALL the cancer cells in the majority of patients.

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. breathe

try pranayama breathing. breathe slowly and expansively, be generous with your body. fill your ribcage, fill your stomach with your breath. and release it slowly. enjoy it. the oxygen will help alkalize your body and strengthen your immune system. it will help the platelets in your blood swim freely.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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 and a half. keep the germs away.

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

luck and gratitude

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. my exhusband sued me and realized he had to drop the case, 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.

housing works

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.

live for today

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

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

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

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

i was saying something to sasha about thanksgiving last year. i was cross because i had ordered a deep-fried roasted garlic turkey from 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.

mothers with children

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

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

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

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

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

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

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

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

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

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


oh, the mothers.


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

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

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

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

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

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

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

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

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

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

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

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

because you can't.

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

14 years is not a blink,

it's almost a lifetime

until you're at the end of it.

isn't that like life?

ameena & the amazons

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

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

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

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

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

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

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

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

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

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

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

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

i remembered that wherever i was was temporary.

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

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

(in our case, in the urban jungle).

the amazon diaries

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

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

oh! all you people!

i am so HAPPY to see you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

ultrasound & blood tests

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

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

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

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

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

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

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

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

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

is that all they needed?

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.

nausea

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.

morning at 9 north moore #1 - part 3

a slightly calmer morning at #1

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

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

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

thoughts on ageing

a friend came over on the spur of the moment the other night. an older guy, very sweet, but someone who always makes me a bit uncomfortable because he is constantly making lewd references and sexual jokes.

i was thinking that he looked surprisingly well since the last time i saw him.

he is a very kind and helpful person to all sort of different people, loyal and good-willed to the bone.

but i still don't like hanging around with him unless there is someone else there to deflect or attract his attention.

the amazons all immediately left the room moments after he arrived.

i was thinking that that kind of behaviour in young guy - adolescent or early 20s - is sweet and charming and a bit silly. but once one has crossed the threshold of 27 or so, a running streak of innuendo is unseemly.

almost ridiculously so.

i was thinking how often i - at my advanced age & with my cougar predilections - cross the line of discomfort.

occasionally, some guy will be flirting with me and, when i bat the banter back, i notice i miss the mark. and i am not sure why.

perhaps i need to learn some new rules.

not to say that older women are not sexy - but how do we define that sexy?

what space does it live in?

i remember being somewhat horrified about the pictures of madonna in her sex book, dressed in pigtails in a gingham dress. there is something unsettling about mutton dressed as lamb.

french women seem to do it well - all glossy red lipstick and decolletage - and irresistible laughter.

indian women, well, we age well - physically - but we tend to either fade politely into the woodwork as we get older. or become hardcore brazen, making out in public and seemingly more louche than elegant.

it is even harder when one's not married, because presumably, one is still "on the market" - and how do you telegraph that without being too obvious?

and more so - how do you do it with dignity? i want to set a good example, a self-respecting model for the amazons. with teenage daughters watching (and pointing out all my missteps), i live with a reverb. a funhouse mirror reflection of every action.

wondering how to find the balance.

old world new world - or the drama the drama

on saturday, my mum called and said, i know you are so lonely and have no one to talk to anymore - but please, you must end this facebook thing!

but first - i had 5 kids in my house, a depressed friend, hormones out of control and was still reeling from an incredibly nasty email in which my first ex-husband andrew blamed his being a MIA dad on my "trapping him with a marriage and a baby" that i engineered (despite the fact that baby and i cut our losses and split in 8 weeks of her birth and he refused to get divorced because i "abandoned"him...)

next a 45-minute sobbing phone call where my mother begged me to get off facebook because 1. people as far away as dubai and france were reading my mad family stories and laughing (they are MEANT to be funny) 2. in our culture, we don't praise our daughters and my daughters would now never get married, make lasting friendships or get real jobs because people would remember they were terrible teenagers 3. in our culture, there is a concept of "shame" (read salman rushdie for more explanation) and that seems to have bypassed me entirely 4. she goes to dinner parties and people know that my cousins are visiting or i have a job interview before she does.

i tried to explain to my mum that i don't write anything on facebook that i wouldn't say to someone in the supermarket line.

and admittedly, i sometimes express exasperation, frustration, irritation with my kids and/or ex-husbands and finances - but wait, isn't that a normal human state?

this is the new village, i said.

this is the over-fence, on the sidewalk chat that people have these days.

when i was in college, i shared a flat with a guy at one point. not a boyfriend or a romantic interest in any way. douglas is a lovely brilliant person and now a professor at UCLA, i think.

my mum stayed with us and said, oh, this is terrible - what do you think all my friends in india will say when they hear that you are LIVING WITH A MAN?

i said, um how will they know?

and she said, oh i'll have to tell them!

it's funny, because i remember, when i was a teenager, aunties coming up to me and saying, tell your mother not to talk about EVERYTHING, it's not nice.

so in her world, she's right.

in the old world, the internet is a vast and scary place where you post the wrong thing and your identity is stolen, your children kidnapped.

in the old world, your "privacy" is a jealously-guarded secret.

a friend of mine got upset a few months' ago because i said her baby was crying while she was on the phone. she said, but you WROTE HER NAME on the internet. that was so uncool.

and i said, first, why does it matter? you might tell the guy who serves you a burger at the shake shack her name.

and second, who will ever remember?

i was trying to explain to my mum that paris hilton got famous for having sex on youtube. and now she is selling fragrances to pre-teens.

in the new world, the collective memory is very short.

in the new world, we realize that privacy does not exist.(and perhaps it never did - live in a small village anywhere and you'll discover that everyone knows how many croissants you buy on sunday and whose car was parked outside your house last weekend)

do a quick search on almost anyone on google, dogpile, about or zoominfo - you'll be surprised by what you find out, or don't.

in the new world, internet absence is mark against against them.

but also, your medical records are computerized, so are your credit reports. if you use ezpass, the state has records of every place your car goes. there are records of every financial transaction you make if you use a check, a credit card or a debitcard.

and don't you think the grocery check-out girls discuss the bizarre contents of your shopping cart as a chance to deconstruct your personality? (please, i worked check-out before)

look online, chances are, you've been tagged in a photo somewhere. mentioned in school records.

as i said to my mum - what do i have to be ashamed about?

in old world, men were "trapped into marriages" by women who got pregnant as a strategy. (should i mention that my ex-husband and my mum are quite close in age?)

in the new world, we take responsibility for our choices.

it's not scary - it's thrilling!

we're not victims, we own our narratives.

we invite people in and realize our common humanity.

and isn't that the point?