Tuesday, January 17, 2012

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.

Tuesday, January 3, 2012

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.


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.


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.


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.


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.


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).


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.


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.