when mother was away on business

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

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

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

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

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

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

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

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

cancer is so boring

i am tired of being sick.

i am SO over it.

bored of cancer and being tired.

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

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

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

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

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

but just for a little while.

now i am ready to be myself again.

i must be feeling better.

cancer diaries- more FAQ about hair

your hair falls out from chemo.

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

first i was bummed about losing my eyebrows, but the appeal of only shaving my legs very gently and then not at all, losing my mustache, my arm hair which is constantly being ripped out by bandages and tape when i get IVs and injections

and all the pleasures of a brazilian wax without the pain

are really winning out.

the amazons are bothered by my being bald. and my mum is so freaked out, she keeps readjusting my hat at home and she won't let me take it off while she's around (for the next 2 weeks, at least).

but i am enjoying both the shock and the androgyny.

there is something weirdly liberating in having no hair and being so skinny that one's body is all angles. i can suddenly see the pleasure an anorexic might take in having totally controlled the fecund nature of the human form.

it's so asexual as to be beautiful. sculptural and alien.

people are suggesting hats, scarves, earrings.

whereas i am enjoying the purity and simplicity of shape.

perhaps i am strange but - as when i was pregnant - i love watching the metamorphosis of my form. my body never ceases to please and astound me in all the shapes it takes.

cancer diaries

"make an effort"

while going through all this craziness that is cancer treatment, a friend who recovered from breast cancer gave me a piece of advice, "this is the time to wear make-up."

i suggest you avoid going all out so you don't look a slightly mad scrawny old coot with little circles of rouge on your cheeks but

i do think it makes a huge difference to get up in the morning, take a shower, use all your facial moisturizer products and blush and concealer and eyeliner. (whether you put mascara on your three remaining eyelashes is up to you, i don't because i feel i look desperate)

put on any fragrance that doesn't make you gag and wear somewhat attractive clothes that you could leave the house in

even if you just plan to go back to bed.

though if i am going to see my doctors, i might even tart myself up a bit more and dress like i am going to work. then when i ask questions, i feel more confident and professional.

on a day when i am staying home, i like to tidy up a bit and make my bed before i get back into it. it gives me a sense of calm and order and control.

somehow, wandering around in the same pajames and slippers you've worn for the past three days, leaving a trail of dirty dishes makes you feel like a tragic sick person

which of course, despite having cancer, you are not.

you are getting better all the time.

anger management

one of the most interesting things for me about cancer is how psychosomatic it is.

(i do believe it's an epidemic now because of the crap that's in our air and water - thus in our food as well - but also because of the tension and anxiety-filled lives we lead)

one fact in the literature they handed me at MSK (memorial sloan kettering) is that people who are angry, frustrated or striving for perfection are more likely to develop cancers.

in my case, i'd had a series of earthshakingly upsetting events from last spring to this fall. i was overwhelmed by a sense of injustice and being treated unkindly by people i'd believed i'd been extremely understanding to over the years.

and quite often, as all my feelings of anger and rage welled up inside me, i realized that a lot of my anger was towards people i'd be ashamed to even admit i was angry with. people who meant the best, or people i resented because my own reactions to them made me feel used or ill-treated. my mum, my dad, my kids. even the DOG for a little while.

in fact, i wasn't even that angry at the people who i really SHOULD have been angry with.

though i did keep engaging in all their whirlwinds and dramas. i kept responding to all their accusations. i kept getting hurt when they tried to hurt me.

in my case, in the midst of realizing i was sick, i had to keep letting the anger explode and then face it. i worked with tapping (EFT) http://www.emofree.com/, energy healers http://www.penneyleyshon.com and daria dibennardo, sufi chanting and meditation.

i prayed, i asked everyone of every religion i knew to pray.

and when an incredibly angry ex continued to spin and gyrate his narrative of hurt pride and bruised ego down to absurd levels of details, i was able to just disconnect.

(interestingly, he'd had cancer as well)

so the latest part of my cancer treatment is to stop getting angry.

just writing that is so ridiculous it makes me laugh as i type it.

but i am working on stepping out of the maelstrom, of separating myself from other people's stories and frustations.

i am learning to make a few decisions selfishly. this is what i need - and i will not try and balance out what everyone else needs before i do it - and if it makes other people angry, i will try and move away from them.

i was talking to my mum once when she was angry at someone. i reminded her of the chinese proverb (or quote - can't remember, but that's chemo in my brain) -

getting angry your enemy is like taking poison and hoping that your enemy will die.

you just make YOURSELF sick.

what's a uterus between friends?

my hair is falling out in wig-size amounts and everyone is breathing down my neck to have a hysterectomy.

if my mum and her friends could pull out carving knives and chop it out themselves, they would. in fact, every day, i get another phone call from one of her friends trying to convince me to do it.

and the women who have been castrated - apparently, the medical term of removal of the ovaries - compare it to removing your tonsils, your appendix, your gallbladder - all those other parts of the human body that years ago were considered unnecessary.

look at this:

http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5105a1.htm

hysterectomy is the second most common surgical procedure in the united states, the first one being a c-section.

the one thing i get asked over and over again, "do you want to have any more children?" and when i answer in the negative, they say, "well, then get rid of it."

i am finding it increasingly bizarre that the half the world thinks that the only value of a uterus is producing babies.

especially since, immediately after its removal, you start having hot flashes (with or without the ovaries) and you have to move gently so that your small intestines don't slide into its place. and those are the minor disadvantages.

and when i ask my doctor what the disadvantage is to a hysterectomy she says, "just one, decreased sexual pleasure..."

polling the women i know who've recently had hysterectomies, the one thing they all complain about is the ongoing pain, even years after the surgery. the doctors all insist that with a laparoscopy, you'll be up and about in 24 hours. though the reality is, even for that, you need two weeks to recover enough to go back to work.

here's something i found online:

Women report a loss of physical sexual sensation after hysterectomy.

A woman's vagina is shortened, scarred and dislocated by hysterectomy.

A hysterectomy's damage is life-long. Among its most common consequences, in addition to operative injuries are:

* heart disease
* loss of sexual desire, arousal, sensation
* weight gain
* osteoporosis
* bone, joint and muscle pain and immobility
* painful intercourse, vaginal damage
* displacement of bladder, bowel, and other pelvic organs
* urinary tract infections, frequency, incontinence
* chronic constipation and digestive disorders
* debilitating fatigue
* loss of stamina
* altered body odor
* loss of short-term memory
* blunting of emotions, personality changes, despondency, irritability, anger, reclusiveness and suicidal thinking

FACT: No drugs or other treatments can replace ovarian or uterine hormones or functions. The loss is permanent.

FACT: The medical term for the removal of the ovaries is castration. 73% of women are castrated during hysterectomy.

FACT: The uterus and ovaries function throughout life in women who have not been hysterectomized or castrated.

FACT: 98% of women HERS has referred to board-certified gynecologists after being told they needed hysterectomies, discovered that, in fact, they did not need hysterectomies.

FACT: Gynecologists, hospitals and drug companies make more than $17B dollars a year from the business of hysterectomy and castration.

http://www.hersfoundation.com/facts.html

if the doctors are not telling me it is a necessity to get rid of the cancer, why would i want to do it?

cancer patients FAQs

here's some stuff i didn't know or maybe never thought about:

one: cancer is not a death sentence. you don't need to go tiptoeing around people with a sad sad face like their dog just died.

lots and lots of people get cancer and get past it and get well.

could you please just make some jokes about it?

which brings us to

two: they say laughter is one of the best ways to increase your immune system. if you're going to visit someone with cancer, remember some jokes or funny stories or bring some funny dvds.

in my case, nothing too heavy. i am not feeling very intellectual right now.

three: chemotherapy and all those other drugs affect your vision, your short-term memory and other fun stuff. so if i lose the plot midway through the sentence - can you just laugh about it rather than looking alarmed? for about 3 days post-chemo, i am a nauseated zombie. it's really hard for me to talk on the phone, let alone sit up for great lengths of time.

easiest way to imagine it is a hangover. all those toxins are gradually exiting your body and everything aches. you can't see straight, words get all blurry, and you are so so tired like you were up partying all night (though in the case, it's without the fun).

four: chemotherapy makes you highly sensitive to scent. so if you're going to visit a cancer patient or ward, go lightly on the fragrance. i can tell you that all the victoria's secret fragrances make me sick to my stomach.

in fact, for me, all commercial fragrances make me feel really unwell - so if you've sprayed on something and you hug me, it feels like all the stuff has permeated my clothes for the rest of the day.

that said, i am liking natural oils - like lavender, rose and grapefruit.

however, you might find your fragrance necessary protection because as the chemo leaves my body - like alcohol, i guess - it makes my skin smell awful.

maybe the hugging is a bad idea to begin with.

five: hugging is a bad idea also because chemo greatly weakens your immune system. so in theory, i can catch every germ that goes by.

this doesn't mean i don't absolutely adore all your cute kids. i love them like mad and they make me laugh, but they are wandering around coughing all over the place and wiping their noses on their sleeves.

and all the doctors have turned me into a neurotic hypochondriac so i am terrified. plus, as i said, when you are all hungover, you just want quiet. even with MY kids, i am preferring them from a distance.

on a less amusing note:

six: chemotherapy and radiation are totally different. chemo (for short) is injections or a drip of highly toxic substances - think battery acid and dry cleaning fluid - that rushes through your veins like marauding hordes maiming and destroying until they get to the cancer which they kill. we hope.

in the meantime, if any leaks out onto your skin, as the nurse told me, "let me know if you feel any burning, because it eats through the flesh..."

then there is radiation.

which i have the pleasure not to experience. something like pointing an x-ray machine at the cancerous spot which is meant to dissolve on the spot, but also makes your bones ache.

more later... but just remember, cancer doesn't mean it's all over.