Saturday, January 30, 2010

The C-Word: don't be afraid of death or cancer

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

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

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

do not be afraid.

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

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

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

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

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

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

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

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

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

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

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

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

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

no cancer.

no one should frighten you into anything that way.

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

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

but get ahold of yourself.

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

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

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

it's all in how you take it.

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

Friday, January 29, 2010

don't be afraid of cancer

video

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

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

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

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

http://penneyleyshon.com/

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

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

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

http://gaynoroncology.com

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

Wednesday, January 27, 2010

don't believe it from me

listen to doctor mercola.

stay away from sugar and corn syrup.

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

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

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

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

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

Tuesday, January 26, 2010

home from chemo


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

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

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

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

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

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

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

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

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

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

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

sasha and jahanara are still here calmly doing homework.

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

thanks for listening.

Monday, January 25, 2010

eyelashes and teenagers and drink

video

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

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

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

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

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

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

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

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

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

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

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

all that to find out one thing.

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

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

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

you're probably right.

Friday, January 22, 2010

my body betrays me

video

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

i've been lucky.

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

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

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

so i will recover. that is for sure.

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

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

i will recover.

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

Thursday, January 21, 2010

beauty and the beast

video

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

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

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

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

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

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

the question is whether you tell people or not.

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

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

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

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

you can be alive and thinking and going out

and writing

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

even while you're kicking it.

Wednesday, January 20, 2010

chemo treatment 5.5


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

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

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

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

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

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

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

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

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

amazing how hospitals make you sick.

Monday, January 18, 2010

hospital again tomorrow

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

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

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

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

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

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

how much more can i take?

this is obviously a lesson in patience for me.

Friday, January 15, 2010

enormous changes at the last minute



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

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

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

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

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

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

but this advice is really one size fits all.

ONE

drink a ton of water.

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

do it.

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

drink

(the

water)


TWO

moisturize like crazy.

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

this is because you are dehydrated.

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

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

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

THREE

give up sugar.

especially white sugar.

it really is bad for you.

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

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

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

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

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

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

do not eat them if you are doing chemo.

or cut back as much as you can.

your face will thank you.

Thursday, January 14, 2010

a missed opportunity

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

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

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

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

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

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

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

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

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

my current question: www.lifemelhoney.com

anyone know about it?

Tuesday, January 12, 2010

amazons of nyc: it suddenly hit me

amazons of nyc: it suddenly hit me

it suddenly hit me

i woke up relatively engergized but still slightly nauseated.

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

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

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

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


Monday, January 11, 2010

post-chemo

ok.
very relieved it's over.

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

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

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

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

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

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

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

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

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

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

bed now.

Sunday, January 10, 2010

sunday

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

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

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

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

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

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

for tonight, some peace.

Saturday, January 9, 2010

filograstim



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

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

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

then i manage.

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

weird.

down time


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

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

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

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

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

but i am sure it will all be ok.

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

Friday, January 8, 2010

full circle

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

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

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

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

grr.

back to chemo at 9:30am on monday.

Thursday, January 7, 2010

light and air

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

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

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

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

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

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

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

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

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

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

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

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

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

i have GOT to get out more.

Wednesday, January 6, 2010

no sleep for the wicked

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

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

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

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

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

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

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

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

Tuesday, January 5, 2010

your kids' friends

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

all you can attempt to control is their peer group.

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

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

HELP.

so i did it

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

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

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

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

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

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

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

Monday, January 4, 2010

fight the powers that be

video

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

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

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

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

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

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

i will keep you updated.

Friday, January 1, 2010

family-friendly comedy

video

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

and i missed the party all together.

except for the video.