The C-Word - Love and Cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

little angels and my demons

last week - or maybe the week before, i went to a screening of "little angels," a series of books and dvds for young children. it was created and narrated by roma downey, the irish actress from "touched by an angel." the screening was at the chic, ultramodern four seasons hotel on 57th street, they served us a beautiful buffet lunch on silver platters. the room was filled with "mommy bloggers," children and babies.

i was especially interested in the project for several reasons. the main one being my obsession with the irishwoman lorna byrne, whose book, angels in my hair, is all about her interactions with angels. all of a sudden, i seem to be meeting irishwomen who know the names of all the angels (are they more connected than us?)

while i'd always thought the idea of angels and guardian angels was sweet and pleasant, sort of like flower fairies, i never took it very seriously.

sometime last month, i had a crazy, hallucinogenic, rollercoaster of an experience with a psychic who also spoke to angels, though in a more subtle way. it was shocking and unnerving, so i started to take the idea more seriously.

what interested me most about all these encounters was the number of spiritual traditions that have angels - muslims, christians and jews all talk about the abrahamic angels, gabriel, michael, izrail... hindus and buddhists have apsaras and devas, spiritual beings who behave similarly to angels. and, of course, lorna byrne expressing her message from the angels - that people of different faiths and backgrounds begin to pray together.

from what i understand, the idea of the sweet "little angels" series is passing on moral and emotional guidance to young children and letting them know that they are loved. the stories of the modern-day children are interspersed with bible stories that explain the principles being taught, like perseverance, empathy and cooperation and belief in a higher power.

at the screening, i raised my hand and asked roma how the series dealt with different faith traditions.

roma said, "we don't. this is very christian-based, though of course, kindness and sharing are good lessons for everyone."

then, of course, a number of other parents chimed in and expressed their appreciation that she was passing on christian values and messages. i should add that, though the human children in the story are caucasian, the angels (which look like little children with wings) are multicultural. the show is very cute and watchable. my two year-old nephew, omaid, loved it. and he loves veggie tales, too.

so i sat there transposing the idea into my own muslim-interfaith-centric point-of-view. i asked myself some questions. for instance, if muslim stories (most of which are actually christian and jewish stories, too, because islam comes from the abrahamic tradition) were presented for children with no interfaith perspective, would i be bothered? is the message from the allegories enough?

was my reaction bigotry or prejudice on my part?

i hope not.

my concerns were this. one, there are already a lot of books and tv shows for children, veggie tales, for instance, or davey and goliath or gumby that express a christian or biblical perspective in a friendly, appealing way (LOVED those when i was little). two, there are also good muslim, jewish, christian and hindu versions of character and moral-building stories illustrated by religious texts.

and three, while i don't know of any modern animation specific to angels in our midst, the idea of angels/devas/apsaras, especially guardian angels, is something that is told to young children all over the world.

i value the idea of letting children know that there are spiritual beings that exist and connect them to something greater but somehow, i felt like "little angels" was too small, too limited. it reminded me a little of timmy and his fairy godparents, the fairly odd parents, except that the angels don't grant wishes and the stories are more reverent and Bible-based.


in my mind, i feel like we need to teach our children how the angels are connected to us - but also how we are connected to everyone and everything else. that Divine energy runs through all of us, that there is no separation. that LOVE really is everything.


while a faith tradition is important, we need to remember that it is culture, like clothing, a language, a skin color. it is something that serves a purpose, but while it looks or sounds different, it all has the same value, the same reason.

underneath, we are all the same.

feeling unsatisfied, i approached roma at the end of the screening. i introduced myself and told her what a great project it was.

she said, "thank you so much. you're a muslim? i've met your king."

i must have looked blank (who knew there was a king of all the muslims?) so she added, "king abdullah... and his lovely wife."

i muttered, "king abdullah of jordan, oh..."

she seemed to realize i was lost and said, "what country do you come from?"

i said something about my ethnic origin being indian and she said she had been there and then our conversation collapsed a bit.

i asked her how they might address the interfaith issues and she said, "we don't plan to. we are in wal-mart all over the united states starting today and we feel mainstream christians are a much bigger audience."

she said it kindly, not dismissively. she was clearly trying to be approachable so it didn't seem like a good place to argue my point. but i was disappointed. if the series really reaches young christian children all over the united states - maybe even all over the world - how much more powerful the message could be,

how much more powerful the lasting implications of telling young children that we are all one.

people who've told me they speak to angels always clarify, angels are different than humans. we don't become each other. angels don't become babies and people who've passed into the next world don't turn into angels.

as humans, i am told, we are actually much greater than angels, our light is brighter and more able to impact each other and the physical world.

and as children, as everyone from educators to scientists to psychics will tell you, our creative powers are at their peak.

in my mind, the idea should be to find a way for young children to hold on their innate knowledge without reducing it to a single faith or tradition or culture. without being too cute or cheesy or hokey or predictable. keeping somehow the magical, ethereal nature of what we need to communicate.

is that impossible? or are we just not there yet?


time to walk the dog.

Love, Inshallah

i went to a reading last night for a new anthology called Love, Inshallah.

sadly, i am so broke right now that i can't possibly afford it, but i am SO happy. the response has been positive - and let's be honest - i am also completely thrilled that i am not the only "fallen" muslim woman in the fold.

when was in my late teens, my mother used to say to me, "lots of girls do what you do, of course, they do, but no one else does it so openly, why do you insist on writing about everything so it's all there for everyone to see. people don't like that." when Bombay Talkie came out, i might as well have sewed a scarlet letter on my chest.

so i stood up at the reading and thanked them for taking on the mantle. Alhamdullilah, i am no longer the only muslim woman to write about being divorced.

from what i heard at the reading and on amazon, the anthology cast a wide net from the sacred to the profane and back again. i am so relieved to have all these women on my side. one speaker's statement at the packed reading (at bluestocking books in the lower eastside), paraphrased because i was sitting so far in the back, i couldn't see her (and i don't remember it properly), "my Islam and my God is so loving and compassionate that I know that I am always welcome there... it is a part of me."

exactly how i feel about my relationship with the Divine now. phew. i found my tribe. even though i found them a bit late. they even talked about the woman-led muslim prayer service in nyc that i dragged my daughters to in 2006.

at the end of the reading, where you stand around holding all your stuff as they fold up the chairs, get overheated as you hug your coat and bag in the stuffy room, i was approached by a friendly woman with gorgeous brown eyes and a headscarf. we started talking about divorce. she was divorced, too, with a young son. we shared some stories about how our families and friends reacted to our situations. then she started asking me a lot of questions about my feelings about sexuality post-marriage and as well as the rules i was enforcing for my teenaged daughters. i was a bit taken aback.

i realized that in the exchange, i was the one being judgemental. i was the one assuming that this woman in hijab would be judging my choices so i was hesitant to express them. i felt like she would look at my miniskirt and t-shirt and my daughter and think, "well, this one is going to hell in a handbasket..."

real life's been a series of misunderstandings for me at the moment, so i was tense already and assuming the worst. not the best moment to build bridges. made me think of a conversation i'd had with some friends from the mosque about things that are "haram" (forbidden for muslims). we were at pop burger after a movie screening. it was a playful dinner conversation about what they would like to do if it weren't forbidden. when it came to me, i said, "i already tried everything i wanted to do!" (i meant to add - if i didn't try it, it's because i never wanted to anyway).

i wasn't sure what to tell the lovely woman in hijab in front of me - especially after all my stupid bravado of standing up during the reading and outing myself as a licentious, divorced writer in front of my 13 year-old - so it wasn't like i could play all demure and reticent now.

i tried to wriggle out of the conversation but she held me there and said, "as women, we need to start talking to each other, we need to stop criticizing, stop judging..."

in that instant, i remembered that that was exactly what i'd said all along. she was right. she is right. we need to look past other people's external choices for how they interpret faith. it is about accepting and respecting everyone's practice.

understanding and compassion.

i don't have nearly enough of it. harder still when i am under pressure - but isn't that when it's most important?

and isn't that the reason for the book? reminding us to see our common humanity.

"yes," i told her and gave her my information. "we're all in this together. please call or email me, let's have coffee."

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.