why the c-word?

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. why wouldn't they talk about it?

because people are so scared of cancer, they might see you as a symbol of bad luck. one woman wrote about not wanting to tell people that she had cancer because she felt they wouldn't trust her afterwards. they might feel like she had gone to the dark side.  so she was very careful about how she divulged the information.

in my opinion, cancer cannot be - and must not 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 reconnect with the people who matter to you.
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

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

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.

might is right

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

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

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.