The C-Word: How to Say No

I am always asked this question.

When faced with the enormous weight of the medical establishment and the cancer industry, along with the battalions of family members and friends who told me I was a selfish, unrealistic, irresponsible mother with a death wish, how did I say no?

How do you make a decision based on the quiet voice of your intuition when you're scared out of your skin? And when almost every person of repute is telling you that your intuition might be deadly wrong.

How do you do what you feel in your gut is right for you and your body?

This is critical.

Toddlers say, "No" often and with conviction. "No green beans!" "No shoes!" It's simple.

Teenagers do it by rolling over and going back to sleep. Or ignoring their parents' text messages. It's all about creating a separate identity and learning to make your own boundaries. It's a crucial developmental step.

Eventually, though, as we grow up, we all learn the value of saying, "Yes." Or at least, "Oh, all right," most of the time. It's a necessary part of living in society. We get to work when we are told to be there, we do the laundry for the whole family, make dinner when we're exhausted.

The problem is that we - especially women - often forget that we need to assert our independence sometimes. Not just for the brief rush of power (and ensuing guilt) of doing what we want, but as a sort of self-protection. There is only so much you can do and if you don't learn to protect yourself, the world will eat you up.

I am not suggesting that the world is malicious, just that the people who love you most, who care most about you, sometimes don't realize that you are a human yourself who also has a responsibility to herself. That sometimes you need to tell them, "No."

When you are sick, this can get even harder.

If you feel like your illness might respond better to a certain diet, let's say your own version of Unger's Clean or Gerson therapy or any of the variations and options out there, you need to protect yourself from the people who love you and may have stayed up all night baking your favorite brownies or frying samosas. If you are weak and tired and you don't even really like brussel sprouts, but you somehow know that's what you need, you need to say, "No, thank you," to the person who brought cupcakes and the doctor who says, "What you eat doesn't really matter anyway."

For the hospital, here is your first bit of ammunition. In the land of the invalids, the squeaky wheel gets gets the oil. Statistically, patients who complain and demand attention get better care - and recover faster. The more active you are in the process, the better your care will be - mainly because you've lived in your body and you know it better than any doctor ever could. I'm not suggesting you be nasty and mean to anyone - and especially not the nurses because they really work hard - but that you stick to what you believe.  Even doctors and nurses, when they stop to think, believe this.

The uncomplaining patient who quietly does what she's told tends to be forgotten in the rush. If you have unpleasant symptoms or side-effects and you don't demand that your doctor address them in some way, you run the risk of hurting yourself in the long run. The human body reacts differently to different drugs as well as different illnesses. It's possible that something that seems unimportant may turn out to be something serious.

That's why I suggest you listen to yourself and your body. Trust your intuition.

When you are sick, vulnerable, frightened or even just intimidated, that is the time to say, "No," and take your power back. No, I don't want cortisteroids. No, I don't want a medical student to give me spinal tap, I'd rather have someone with years of experience. No, I can't walk there, I want a wheelchair. No, I don't want a wheelchair, I'd rather walk myself.

Even if every single person tells you that acupuncture or prayer or avoiding surgery or chemotherapy or radiation is a stupid thing to do, if you feel like something is not working for you, if you get a sinking feeling as you start do it, say, "No." (Interestingly, my daughters never question my convictions).

Remember that you can. There is a patient's bill of rights that allows you to refuse any treatment that you don't feel is benefitting you. It means that your doctors need to explain what they are doing and why. Just because something has "always been done that way" or because something is the "standard protocol" doesn't mean it always works or it can't be improved upon.

In my case, I knew too many people who had suffered from the side-effects of chemotherapy and radiation. The cancer was defeated, but with many of my friends, it came roaring back in four or five years because the person's natural immune system was so decimated by the chemo. I've known people who were killed by the side effects of chemotherapy and radiation but I never met anyone who was killed by natural medicine.

While I am a big proponent of natural healing methods, there is a lot to be said for your own state of mind. If you really have faith in whatever method you are using to get well, it is likely to work. If you have your doubts, don't do it.

For me, I tried psychic healers, massage and cranial-sacro therapists, acupuncturists, integrative oncologists, reiki healers, brennan method healers, nutritionists, and hypnotists. I chose them based on positive recommendations from others. If something felt good - and I found research supporting it - I kept doing it. If it didn't feel like it was doing me good or I didn't respond to the energy of the person, I stopped. I really worked on not being intimidated by either the New Age machinery or the medical industry.

Cancer and other life-threatening ailments are big business and too many people are scared or intimidated into spending a lot of money on treatments that don't work for them. Say, "No."

Not to be too trite but in Legally Blonde Two, Elle Woods uses a disappointing haircolor as a metaphor:

Sometimes you realize that part of the reason you got sick was that you didn't learn how to say, "No" enough. No, I can't drive you there. No, I can't keep the kids this weekend so you and your girlfriend can go to a bed and breakfast. No, I can't cover that bill. No, you can't come have your lunch at my house just because you're in the neighborhood. 

Years ago, my mother taught me the beginnings of saying no to authorities. "Well, the recipe calls for three cans of chicken broth, but I made some chicken stock myself so I will use that." Or "The doctor told me to take this, but it's making me feel sick, so I'm going to throw them away and call him."

Start small. But work on it. 

It's not always nice to say no to the people who care about you. But it's better to be nice to yourself some time.

When I finally told my oncologist I would not do any more chemotherapy despite her recommendations, she said, "You'll be dead in 12 weeks."

When I told the psychiatrists who were sent to counsel me that there were other ways to cure cancer, they laughed and said, "Those are fairy stories."

That was two years' ago. (That doesn't mean I might not have a relapse anyway because five years is the mark, but I've enjoyed the last two years at full steam).

Be brave.

Say No.

It could save your life.

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.