oncRN

cloaked

2011-12-26T20:06:00.003-05:00

my patients come up with some great lines - ones i never want to forget. sometimes i scribble them in the margins of my other notes. i flip through my notepad now and can see the timeline - the day the mouth sores started, the day they got worse, the day she couldn't swallow. mixed in are her reflections on her young body failing her, on visiting family for the last time, on how good he feels some days. it's the same notepad i use for the rest of my life. i don't consolidate intentionally, i just have to write things down the moment i think of them and have to use the closest piece of paper. once a month or so, when the pad is filled up i transcribe everything i need, shred the pad, and start a new one. last month's is some combination of abstract art, ADD, and schizophrenia. any given block of pages reads something like this:

mouth sores - grade 2 - magic mouthwash - ? pain meds
rash worse - doxycycline
"long kiss good-bye"
orthodontist - write check
limes, cilantro, black beans, avocados, dish detergent, something chocolate
"accepting what's happening feels too much like giving up"
field trip money - due tomorrow

nausea worse in am - vomited pills x2 days - ? pre-med - get script
"embrace the suck"
**holiday concert** - send in form - friday last day
"sometimes i think i'll be a better mother from heaven"
pasta, tomatoes, sardines, oranges, coffee, kleenex, cilantro

and on and on...their progress or decline and beautiful, wise quotes, interspersed with my daily tasks and reminders and grocery lists and attempts to manage a household with a husband and three sons. there's a plethora of check boxes and asterisks. there's a lot of lists. i seem to need cilantro a lot.

when i see it all in print it sheds a little light on my heightened emotions and general stress level. my mother-in-law gave me a 'stress-relieving cloak' for christmas. i am not even kidding. you microwave this pad and slip it inside a black, fleece, oddly-shaped garment with no arm holes and a hem-line that hits mid calf. it stressed me out just attempting to try it on. i don't know why she thinks i need that - i mean it's not like she ever sees me overwhelmed or acting like a bitch or looking like hell or hand-delivering some check i forgot to mail in or running out at night because there's no food in the house or announcing way too loudly that someone with a penis needs to clean the downstairs bathroom.

i am sure my dog will bark at me the entire time i'm wearing it, so i guess i'll have to wear it only at work. i'll be the oncology nurse dressed as a sinister character from a fairy tale. but i will have no stress.

thanks

2011-11-27T12:17:00.006-05:00

i'm sure every year i write about it - about the beautiful hideousness that is oncology at the holidays. in the past, i'm sure i've used words like poignant. this year i think i'll use sucks - infinitely less poetic, but oh so accurate.

when your well-meaning spouse and kids say 'tell me about your day', you'll think with equal parts truth and cynicism you don't mean that. because here's the thing - i really don't have the words...and if i find them - watch out - you seriously might regret asking.

but they'll keep asking and the patients that occupy much of your time and your mental space will become known to your family on some level:

'mom, how's your surfer doing?' - he's hanging in there
'how's the gardener?' - she's doing great
'how's the young mom?' - she's not doing so well

watching the young mom process and navigate her impending death will occupy more than a little of your mental space. she'll ask your opinion about celebrating christmas early, and laugh at the potential awkwardness if she does that...and is still alive when christmas comes. she'll cry and laugh as she plans out her kids' 'best worst christmas ever'. she'll force you into conversations you're not sure you're ready or qualified to have and you'll walk away from them a better nurse. she'll have a love/hate relationship with your honesty, but she'll keep coming back for more.

families - lots of them - will be conscious of this being the last trick or treating, the last thanksgiving, the last christmas. the air feels charged with the extra vivid and sharp emotions that come with this. amid the heavy hearts and impending sadness, hope will still live and even thrive, sometimes. hope that the new drug might be a silver bullet, that he might be 'the one' to respond to the experimental therapy. they'll end your meeting with the words, 'miracles still happen, don't they?'. you'll treat that as rhetorical and hope that's how they meant it because for sure you are not in the business of miracle management - that is another department altogether.

there will be deaths that catch you off guard, conversations that break your heart, tears shared with colleagues, treatment plans altered with hopes of helping someone make it to the next holiday, unexplained joy, entirely too much chocolate, and a partridge in a pear tree. it will leave a girl like you a little dizzy some days.

in the days after 9/11, bruce springsteen wrote a song about the firefighters that entered burning buildings trying to save people. its refrain becomes the soundtrack for this time of year. it explains how, in the face of sadness and suffering, i may feel sad, but i always feel full:

may your strength give us strength
may your faith give us faith
may your hope give us hope
may your love give us love

i am deeply thankful for the patients i have cared for this year and for all they have brought to my life. thankful for the families that have trusted and confided and taught so much about courage and grace and love. thankful to serve with smart, loving, gifted colleagues.

strength, faith, hope, and love from and for all the surfers and gardeners and young moms out there...

thank you

silence

2011-05-22T11:32:00.004-04:00

my advice? keep a dustpan in your bag - some days it's all about cleaning up messes, many of which you didn't make yourself.

the worst is this one:
MD: i know you're seeing Mr.S later - just wanted you to know that we had 'the talk' this morning and we're going to be getting hospice set up for him.

RN to Mr.S: so, i know you had a big talk with the doctor this morning - how are you feeling about stopping treatment?

Mr.S: wait...what? what do you mean?

RN, groaning and reaching for dustpan...

turns out MD used words like transition and hospice and comfortable and change in focus and supportive care but forgot to used words like die, or dying, or death, or not treating the cancer anymore or end of life. it's easier than you might think to fall victim to unending euphemisms and fail to get your point across. it's especially easy to do so if you've done most of the talking. in this case, if the MD had asked the right questions, or any questions, she would have known that her message hadn't gotten through.

when it's done well, it's a beautiful thing. when MD has the time and patience and skill, and emotional intellect to treat 'the talk' as an exchange and a time to gather information from the patient rather than viewing it as a speech he's giving, that's when the cornerstone of end of life care can be carefully placed so that it can be built upon. and it's all about what they say and what they don't say and how their body speaks and whether or not they can manage silence.

like the MD i saw who spoke and explained and suggested and connected and advised, and then fell silent. the last words leaving his lips like a stone dropped down a well - the silence of falling. the silence needs to be listened to and honored. this is where the hearing happens and the processing begins. out of this particularly long pin-drop silence came the most important fact of the day:
i'm not ready
we all needed to know this in order to take care of this patient, and we wouldn't have without the silence. that's not to say that it's all easy from there - and it's beautiful and awful all at once.

the pained expressions and broken hearts and furrowed brows and weary family members and quart of shed tears will shift something in the soul, and haunt the car ride home and lead to the inevitable 'why do i do this/this is exactly why i do this ' conflict that is my signature, and will most importantly, make me physically incapable of being patient with the person who asks if i could be 'snack mom' at tonight's soccer game. RN: wait...what?

gloss

2011-04-13T07:00:00.001-04:00

he: hey, so...remember the budget?
me: yeah, i know. well i had to buy those fresh flowers and the lip gloss and that book and that bottle of limoncello...because my patient died.
he: ....and she left you some money? and, just curious...lip gloss?

(insert giant sigh here) dear, i don't write the facts, i just report them. you're just going to have to trust me on this one. yes, lip gloss...which part of mourning did you not understand? jeesh....

they should have support groups for spouses of onc nurses...with an emphasis on finances. i know some banks/debit cards will automatically sort your purchases for you - detailing at the end of the month how much you spent on groceries, entertainment, gas, etc. in my case, even more sensitive software would be able to detect yet another layer of purchases - the screw it (SI) category. given the day and the events that unfolded, the SI purchase might be in the 'life is beautiful, life is good, carpe diem, i'm going to buy something beautiful for everyone i love because i can and the hills are alive with the'...well, you get it. another day, or later that same day, the SI purchase might take the form of 'everyone around me is grieving and sad and trying to make the most of their last days with their loved ones, why the hell am i worried about whether i can afford the $4 matzo ball soup.' of course i can and i'm thinking a giant cauldron of it up in the treatment area might just improve everyone's day.

this all reminds me of those night shifts...you know the kind. you're only halfway through and you can't remember a time in your life when you've heard or seen or smelled anything worse - and you start fantasizing about all the things you're going to do for yourself if you make it through this shift. because you deserve it. because you need something to look forward to. because it all sucks so very, very much. you start planning out the hot yoga class that will the burn the whole memory of this night out of you, the massage that will make your body yours again, the coffee with friends that will restore your spirit. somehow when 8am arrives and you reach your car all of your grand plans get translated into an egg mcmuffin via the drive-thru. and surprisingly, it actually makes you feel better. i don't want to know what they put in those.

i believe most of us have visceral and/or primal reactions to endless exposure to other people's grief and suffering. it will manifest subtlety, differently in everyone, but it's what sets us apart as a profession. it moulds our personalities, and affects our relationships and alters how we process all of the input we receive each day. and nothing against real therapy, from which most of us could benefit i'm sure, but sometimes it's the small therapies in life - the gentle tending to the soul that only a good book can provide, the steaming cup of tea that restores your faith, the matzo ball the size of a softball floating in some nectar-of-the-gods broth, the new facial cream that makes you feel dewey instead of old - these are the soothing balms on the emotional micro-tears we all face every day.

so go enjoy that purchase...carpe/screwe diem...or whatever. you deserve it : )

beloved

2011-03-04T13:16:00.005-05:00

witnessing the spouses
with their deep sighs and
soft caresses and
tired eyes and
interminable sadness

the day after day after day
slog of chemotherapy
and side effects
and wheelchairs and weakness

will make you re-evaluate everything you have thought about
strength
and love
and devotion
and til death do us part

today

2011-02-18T13:10:00.003-05:00

it's always insidious. that ember of sadness that has lived in me as long as i can remember gets fanned by one thing or another and a slow burn ensues. it's subtle, even undetectable to most, and gratefully, it's rare. and it will pass. but it hurts and sometimes it's hard to know how to get to the other side.

i talk with my patients all the time about re-finding their equilibrium after bone marrow transplant or other chemotherapeutic assaults. about how they need to respect their state of recovery, not ask too much of themselves and be prepared to adjust daily, sometimes hourly, to their body's changing needs. about trying to figure out their recipe for diet, laughter, rest, prayer, exercise, good books, good friends that will bring them closer to fine.

hmmmm. maybe i need to talk to myself more.

maybe i'll write about it on my blog. that tool that has been helping me for years to chronicle my past and process my present. something about hitting the publish button always lightens me as i release my thoughts.

definitely, i'll keep to my weekend ritual of going to church and crying for an hour.
maybe because it's the only place besides the bathroom or the car that i'm ever alone.
maybe because of the deaf woman in the pink head scarf in front of me that that signs her way through all of the hymns.
maybe it's the 20-something guy with down's syndrome that plays air guitar through the same songs.
maybe it's the songs and the message that invariably speak of love and good and mercy and grace. church for me has somehow become the intersection of my work life and the rest of my life. the service always feels like a gift and the gentle catharsis it brings, a necessity.

and that reminds me of the patient of mine who bled heavily all over his 'life is good' t-shirt...and then threw up on it. as i was cutting it off and threading it into the trash can we agreed that, in fact, it ain't really all that good, life. it can be, but it can also be hideous. he had come up with several alternative t-shirt slogans by the end of that long difficult day. he asked if i would pray with him before he left, which patients will sometimes do. it always feels like an honor. a slightly uncomfortable omg-what-am-i-supposed-to-do kind of honor. and he put his arm on my shoulder and asked that neither one of us forget that even when life isn't good, god still is. that baby's been simmering for most of a decade and i probably pull the memory of that whole experience out of the old vault more than any other.

i don't believe there are reasons for accidents and bad genes and screwed up dna. but i do believe there are reasons for faith. especially today.

question

2011-02-15T14:16:00.004-05:00

just in case i haven't made this perfectly clear here on this blog, this is difficult work. to care for people, to watch suffering, to be unable to prevent terrible things, to bring bad news, to watch a veil of sadness descend over a family, to deliver the facts without obliterating hope, to be kind and patient and 'on' when you're really feeling edgy and less than kind and 'off'.

and some days, to do all this without being a cynical bitch is damned near impossible. and would you like to know why? insurance companies and mail order pharmacies. that's why. they will make you lose your faith, and perhaps your phone manners. but enough about them - where was i...

oh right...one minute you're present as a family is given the best news of their life in a visit replete with joyful tears and gratitude. fifteen minutes later you witness the emotional rug pulled out from under the unsuspecting family next door. the hollow darkness of their disappointment, their bowed heads and slow tears will gouge something inside that you can't quite name. and even in the absence of these dramatic highs and lows, there is the constant stream of battered bodies and souls that need good advice, thoughtful conversation, careful judgements, the best of yourself that you have to offer. it ain't easy, sister, that's all i'm saying.

really, some days, it's an athletic event. only difference is athletes have people designated to help them prepare, keep them strong, make them stronger, remind them to re-hydrate, coach them, encourage them, point them in the direction of the massage tent after the race. i guess that is my main question, on behalf of my oncology colleagues - where the hell is the massage tent?

hope

2011-01-16T15:28:00.005-05:00

hope is the thing with feathers that perches in the soul ...
emily dickinson

...and in the pleading eyes of your patient that look to you to make something positive out of their bleak circumstances. i can tell him what the physician already has - that the medicines we're trying aren't working, that we don't know of any that will, that we will support him in any way we can, that we wish it could be different. i will tell him all of that and he'll still say, "but you're not giving up hope are you?" and i'll wonder if i'm any better than a politician when i talk my way around that very difficult question. because i do hope for you, kind soul,
that you get to your grandson's school play
that you're given a respite from nausea this weekend
that you don't need to stay for transfusions on tuesday
that the snow doesn't keep your sister from coming to visit
that your blood counts look a little better today
that your football team wins

i hope for a lot. and, no, i'm not giving up.

he is in leukemia limbo hell where you're not dying, but you're something short of really living. where your blood counts keep you tethered to the hospital with bleeding and infection and transfusion needs lurking around every corner. where, medically, there's very little to do except react to a variety of flares the body throws up. where, as providers, you'll be saddened but not surprised when things take a turn for the worse.

it is in just such periods where physicians can be rendered impotent from lack of things to 'do', that nursing care moves to the front lines. and as sad and exhausting as it can be some days, it's a gift to be connected to people in this way. a gift that i'd like to take back some days and exchange for something a little funner or slightly less gut wrenching. because they count on us so much - for conversation on long days, for encouragement, for helping them navigate increasingly difficult terrain. they need us to ask them about how they're feeling and to sit and listen to the answer. they need us to help them process what they're hearing from their doctors, what they're seeing happen to their bodies, and what they can expect in the weeks to come.

passing by my colleague's desks i see that december's cookies and chocolates have been replaced with january's power drinks and protein bars. trying to start anew...to get stronger...to purify. or maybe they're just trying to lose 5 lbs. we here at OncRN choose to ascribe deep philosophical meaning to ev.ry.thing. that's just how we roll.

and we do, each of us, need to find ways to stay strong in body and spirit, because some days it's really just a job - like any other - full of hassles - where the printer won't work and people can't seem to agree on the details of your job description and there's more work to do than hours in your day. but what makes it unique is that each day holds the possibility of something unfolding in front of you
that makes you confront your own mortality
and everyone else's.
and makes you ponder the meaning of life
and specifically, the meaning of yours.

and it can rock your world - with sadness, yes occasionally. but more often than not it's hope rising out of the physical rubble left in cancer's wake that makes me catch my breath.

it is that hope perched so delicately in the souls of patients that guides and humbles and sometimes saves those of us entrusted to care for them.

surprise

2010-09-17T16:43:00.001-04:00

there is prognosis and data.
there is following all the recommendations.
there is following none of the recommendations.
there is prayer and attitude and hope.
then there is luck.
the unpredicatble nature of one person's cells to one specific compound at one moment in time.
for better or worse.
some surprises are celebrated, others mourned.
oh wait...sort of like the rest of life.
i knew i'd seen it somewhere before.

another

2010-09-02T22:34:00.003-04:00

when the words come across your computer screen
that he died
the one who could have been my husband
or your brother
or our friend
do you feel it too?
the...oh god....
or is it...oh God...

it's not 'why?' that's a rookie question
and we're veterans
it's more like, 'really?....again?'
another bomb detonated
in another young family
they just don't make words
for how sad it is

does it ever make you want to run home to your family
and hug them a little tighter?
does it ever make you want to run the other direction
towards something
involving too much alcohol and a primal scream?

is it just me that thinks we shouldn't
have to each read it hidden behind our own screens
reading bad forwarded jokes one minute
and learning of someone's death the next?
that there should be more...
more honor
more feeling it together
at least talking
or commiserating
or dare i say...closure

and we might
sometimes we do
but we might not
in fact we probably won't
because time marches on
and after all
he wasn't our husband
or brother
and let's face it
if we started, we might never stop.

when you read it,
do you have that mini silent grieving
where your eyes close gently and there's that little squeezing ache
in that place where there's no visible organ?
or do you deflect it or repel it
like water on ducks?
you know though,
those ducks that seem to glide across the surface
are paddling like hell underneath just to stay afloat.
i'm just saying...

and so it is... another experience lived
another privilege had
another card sent
another blog post written
another big sigh
another moving on

full-time job

2010-08-10T15:27:00.003-04:00

there are appointments to make
and drivers to find

there's remembering not to eat or drink after midnight
next tuesday

there's collecting your urine for 24 hours
and handing it off to someone who takes it
with a gloved hand and a smile

there's remembering what meds you're on
and making the spreadsheet to keep track of them all
and remembering to take them each the right way

there's consenting to having bits of yourself taken and tested
blood, tissue, marrow

there's the rash
the infected port
the swollen joint
the peeling palms
the mouth sores
the immobilizing nausea
the weakness
the 'cannot peel your own face off the pillow' fatigue
the absent libido
the hiccups for 3 days straight
the sadness

there's being your own advocate
the googling, the questioning, the reading

there is the energy expended in hoping for the best
and preparing for the worst

there's the waiting
for your bloodwork results
for the surgeon to round
for the doctor to call
for the scan to be read
for the healing to begin

there's figuring out how to answer the question
'so, how are you?'

good-bye

2010-06-10T08:56:00.004-04:00

you care for a patient for months, maybe years.
eventually the end comes
where all treatment options have been exhausted
and the patient is exhausted...and 80...and just done with the whole thing
so he's set up with hospice care and sent home.

this line of work is littered with or decorated by (depending on your state of mind) many, many good-byes
this variety is uniquely emotional and complicated because our language and/or culture is sorely lacking in words appropriate for such a send off.
i'm sorry? godspeed? farewell? stay in touch? - nothing quite works.
anything, though, to avoid the ubiquitous 'take care'.

and if you're off work that day, then you miss the good-bye altogether.
you consider calling which may be even harder.
at least in person you have a hug to fall back on if words fail you.

you wish you could turn it over to your son.
you imagine it something like this:

Hi! So how's your death going?
Does it hurt?
Is it boring?
Are you scared?
Do you cry a lot?
Do you believe in god?
Maybe your wife could buy you Sunny Delight. My mom buys that for me when i'm sick. I mean the vitamin c couldn't hurt.
Do you get to watch a lot of t.v.?
Do you have a Wii? Because when i was sick this year i learned how to play baseball lying down. it's not that hard if you just turn your wrist a certain way. i could show you.
Well, we miss you here.
Okay - bye.

i think i'll send a card.
thinking of you
not terribly original.
but it's true.

choice

2010-04-27T10:36:00.003-04:00

i'm not fool enough to think that i know what i would do if a doctor offered me door #1 and door #2. especially when both doors look like they are about to fall off their hinges.

when you hear a doctor speak so clearly and beautifully and really nail it saying 'i recommend that you go home and enjoy the time you have left - nothing we have to offer can improve the quality or length of your life', you breathe a sigh of relief. until the patient says 'no, i want whatever you have. i know it probably won't work, but i'm prepared to die trying'.

huh? really? is that your final answer?

and, it is.

it's amazing how one minute it's our job to be the givers and explainers of life-changing information and offer recommendations that honor the person and the situation. but in the end, the patient will decide what they want and then it's our job to shift gears and make it all happen and make it as easy as possible.

this is how the field moves forward. if not for people willing to take huge risks, there would be no taxol, no gleevec, no rituxan, etc, etc.

but it will be difficult and probably ugly and he will, indeed, probably die trying.

part of you wants to say thank you as representative of the collective good.

part of you wants to say sorry as one who has watched this story unfold before.

ironically, you end up saying you're welcome, because he thanks you for the opportunity.

godspeed...

valley

2010-04-18T13:54:00.000-04:00

last week she had MDS - this week she has AML. there will be figures and data and statistics quoted, but all of that can only be used to calculate the suck quotient - which is very high. she asks you what you would do.

a family will decide on no more treatment for a mom. and they will achingly embark on their final chapter together on this earth. their 6 year old will draw you a picture of barack obama.

a mom will hold her son and rock him. and tell him he doesn't have to keep going - that it's not giving up - that she won't leave his side. her eyes will look closer to death than his. the physician present will wrinkle up his nose and look upward - no doubt itching the pre-cry nose tingle.

shattered bodies and wounded souls will give rise to truth and beauty and strength - in front of your eyes - on a monday - between 12 and 3. and it's all you can do to not stagger when you get up to leave. decisions were made, tears were exchanged, vows were kept, the very essence of life was somehow backlit by the scenes played out in front of you. you feel that you saw them enter into and emerge from the valley of the shadow of death.

as a child, when you heard the psalm read, 'Yea though i walk through the valley of the shadow of death....', you assumed the 'Yea' was 'Yay' - as in 'whoo hoo!' - which you never really got. some days, though, there is something mildly celebratory in the air as the labyrinth of fear surrounding death uncoils gracefully. and you thank god that you could be present for it. that this day and those voices and words and expressions could become one more tile in the elaborate mosaic through which you view you work and your friends and your family and your life.

walking through the flames of other people's suffering, i pray that my faith and my character may be refined.

fyi

2010-02-13T19:42:00.006-05:00

a couple things i'm sick of:

1 - in trying to take care of my patients, i'm tired of other providers asking me if he's really in pain or if i think it's really as bad as she says it is or my favorite, 'with the narcotics he's on he shouldn't be having pain'. huh?

pain is what the patient says it is. that is what we are taught and that needs to be our main operating system. yes, we need to dicuss and use scales and be sure we're speaking the same language and be responisble and on the lookout for addiciton and abuse, etc, etc. but please stop trying to decide if what someone says they are feeling is accurate. that is nonsense. we don't know. let's be grateful we don't.

2 - this conversation -

nurse - 'wait, why are we offering this super difficult treatment to this super old person with super crappy disease?'
doctor - 'because she wants treatment'

i so desperately need a game show buzzer for my pocket....because we're sorry - that is incorrect
i have yet to meet a patient who wants treatment.
patients want an outcome.
big difference.

it's difficult, emotional, complicated work we do.
i don't mean to suggest that i have all the answers.
i just have these two.

passage

2010-02-04T11:15:00.002-05:00

i won't ever forget the family from the Congo
who moved their patriarch's head of the bed away from the wall so they could surround him.
who put on an impromptu display of voice and rhythm that pretty much shattered the myth of white supremacy in the first two notes.

they sang and drummed on various surfaces and kissed his head.
they laughed and cried and hugged each other and arranged his blankets.
they prayed and sang some more and pressed a worn olive wood cross into his palm.
i soaked it all in, all the while watching his chest rise and fall until it didn't anymore.
they laced arms over shoulders forming a tight huddle around the bed crying and praying and thanking God for his safe passage.

the intern arrived and greeted the family, moving to the bedside to listen for heart sounds. one of the brothers looked at me and smiled - the absurdity of hospital procedure never being more evident.

'time of death 3:45', he said with a solemn nod.
i think he learned that from t.v.
and anyway, i beg to differ. i just witnessed the beginning of something - i'm not sure what - i just know it wasn't an ending.

it was a celebration of life and family and love and of death, unlike any i have seen since.

i want those people there when i die.

looking

2010-01-15T20:20:00.003-05:00

he was a fixture here for years. sometimes sporadically, sometimes often, depending on what his disease was doing. there were all the highs and lows that come with multiple therapies and partial remissions and disease progression and side effects. somehow, he mangaged it all with calm and humor and grace.

he was a favorite. he was also a freqent flier. he often asked if we had considered starting a program through which he could accrue points for his visits. he was hoping to work towards an ipod.

when it's five o'clock on friday and you see the doctor you work with is calling your cell phone, you heart skips a beat. all you know for sure is he's not calling to wish you a happy weekend. you know someone died or is dying but, him? oh please, don't tell me that...not him.

'oh my God, what happened?' 'the flu', is all he says. you note the quiver in his voice as he tells you he's going to meet with his family. he's called you with deaths many times before and you've never heard the quiver.

the flu, after everything he has been through? come on. we had made such progress with his disease. we had him lined up for the next treatment and we all really believed it was going to be great. he was ready, and excited, and feeling good.

but that's one of the giant bitches of cancer - collateral damage. there's lots of it. and no one ever died from a cancer cell itself. it's the armies of them that band together and crowd out good cells or bore holes, or burst and send their toxic contents flying, or press on something they shouldn't, or prevent an organ from functioning correctly. or it's the endless drugs that you take to keep the cancer in check that whittle away at your immune system or lessen your reserve. and even if you can get rid of the cells, the damage may remain. and he had been through hell, treatment-wise. his body couldn't hold up to this particular assault.

his wife called crying, "i just keep expecting him to come home from home depot. i keep thinking he's just at home depot. i feel like i'm looking for him everywhere.'

i don't tell her that i've been looking for him too - the two are hardly comparable. but when she says it i know that's what it is. countless times over several years, i rounded a corner and there he was. there's a chair that i think of as his chair and he keeps not being in it.

we all miss you.

2009-12-23T14:59:00.003-05:00

"definitely NOT ordering the roast beef next year - way too rare", said my dear patient who bought all the nurses lunch from his favorite deli.

those two little words upon which all the tragedy, frustration, uncertainty, and poingnancy of cancer at the holidays rest...next year.

another christmas is unlikely for him given his age and his diagnosis and his five thousand platelets. though who am i to know or guess or say?

but the words hung there for an extra moment, the way words do when they are about life and death and not really about lunchmeat.

sparks fire in my over-analytical mind as i wonder if he realizes how bad his prognosis is. if we've not been clear. if i should do this or say that or bring it up later, etc, etc. later in the conversation he tells me how all of his children are coming in to town. the one from madrid, the one from california, the two from florida. he tells me they haven't all been together for christmas in 15 years. then i know he knows. and i chide myself for thinking for a minute that this man who has fought with cancer for the last 2 years and fought with life in general for the 78 years before that wouldn't know where he stands.

i'm always struck by the paradox of day to day interactions with patients. you get to know them to the point that you're familiar with the minutiae of their lives - what they planted in their garden, how their daily walks are feeling, whether or not their son pulled out a C in algebra. but always with us, in every conversation, is the larger context of their life and their cancer and the dreaded intersection of the two. i'm finally learning to listen for the lead...and follow. occasionally people want to talk openly and concretely about the end of their life...their last this...their last that. mostly, though, people want to talk about next year's roast beef.
and i am totally down with that.

empathy

2009-09-10T15:33:00.002-04:00

I used to think it was all about trying to imagine what it's like....trying to fathom how it would feel if it was me...trying to walk in their shoes.

But I'm starting to realize that it isn't...and I can't...and I don't.

Suffering and fear bring inner chaos. You see it in the eyes, and if you look closely, the hands.
Some days are all about finding the answers and tweaking the meds and trying all your tricks to reign in their chaos.
Sometimes there are no tricks left and 'being there' is all you can do.

Empathy is effectively communicating to another human being,
by words or touch or actions,
that their pain is real...and it counts...and it matters.

At least that's what i think it is today.

evolution

2009-09-08T13:04:00.003-04:00

me: "Hey, I'm here to see the Westins - is this a good time?"
colleague and friend: "Yea, I guess, but they're already pissed at you."
me: "What?! Why? I've never even met them!"
colleague and friend: "They've been waiting 2 hours for you. I told them you'd be here at 9."
me: "Why? I told you I couldn't be here until 11."
colleauge and ex-friend: "Oops...sorry..."
me: manage to express "thanks for nothing", "what did i ever do to you", and "you're buying me a coffee later" with only my eyes. it's a gift.

Okay, so this is not a good situation. I'm starting this one in a hole...a deep one. I consider donning chainmail and a helmet before entering the room, but realize i left them in my car. They are stressed out, don't feel well, are scared out of their minds, and now they think that some nurse is just taking her sweet time getting to them. Deep breath...

I enter, introduce myself, and just to clarify once and for all that there is such thing as a dumb question ask something like, "So, are you all ready for me?"

The Mrs. is armed. It's knitting needles and she is working those things so fast, I swear I saw a couple of sparks. The needles fly through her fingers, but she stares, okay glowers, straight at me as she does some sort of knit one, snarl two pattern.

The Mr. (the patient), arms crossed across his chest, speaks first saying, "Ready? We've been ready. Where the hell have you been?"

they are stressed out, don't feel well and are scared out of their minds
they are stressed out, don't feel well and are scared out of their minds

I apologize, mention that there was a misunderstanding about the time, apologize again, and start to set up. I have to teach the Mr. to give himself shots...2 of them a day. I quickly learn that the doctor told them it was only 1 shot a day. I resist the urge to use the term Shinola when explaining that the doctor is incorrect.

Eventually, we hit our stride. They read the handouts, handle all of the equipment, watch me demonstrate, and practice on the model. Then the time comes to do the real thing. He's so fast I almost miss it. 1-2-3-done. 1-2-3-done. The first two shots are in and he gave them to himself. They give each other a funny raised-eyebrow smile and it's like a fever breaking. Then the emotions come pouring out:
"I haven't been that scared in a long time"
"I really didn't think I could do it"
"That wasn't nearly as bad as I thought it was gonna be"
Their phone rings somewhere in there and they tell their daughter, "can't talk right now, we're working with our nurse". I smiled to myslef hearing the "our nurse"and yes, a small part of me thinks ha ha made you like me. Just a small part, I swear.

I go to leave and it's thanks and hugs all around. What a difference an hour makes.
The magic, for me, is in witnessing the evolution. To watch someone get it...understand...gain peace...explain it to their spouse like they've known it forever. To watch someone go from not knowing and fearing to knowing and accepting and doing right in front of you.

It's nursing distilled to its essence: providing direction, comfort, information, and hope to someone who really needs it. And I love it.

results

2009-08-20T15:12:00.002-04:00

i'm glad i know
how hard it is to wait.
it can only make me a better nurse.
slightly more crazed and frayed, maybe
come to think of it though
that's how i'd describe some of the best nurses i know.

the hell of waiting for results
where against all psychic counsel, your heart rate rises and your breathing is shallow
and your bowels churn, threatening your comfort, as only they can do

you've done the emotional math
what's the worst they can find?
what's the best?
what will we do if....

you sit there making small talk
waiting for them to come deliver
your family's fate
in the form of scan results
on a piece of paper

a piece of paper that you know someone is probably carrying in their pocket right now
as they deliver the guy's fate next door

will this day be remembered?
will it be the start of the big sadness?
or will it be forgotten altogether

i will myself to the conclusion that whatever it is, we can handle it
we're close. we love each other. we take care of each other.
my non-zen alter ego whispers 'blah...blah...blah' in my ear.
alter ego knows the truth
the truth is that the thought of watching cancer strip my dad of his life, his pleasures, his limited body fat, makes me want to run from the building screaming.
sure, i can handle it
but i don't want to handle it

and just as i think i might implode from feigning casual
the nurse comes in with the results
and they're good
as good as they could've been, at least

my dad takes the paper
and my mom exhales
and my heart rate slows
and i give my bowels the 'as you were' nod
we hug
and make a few calls
and wave farewell to that bullet that just whizzed by

as we make an appointment to do it all again in three months
i could swear i felt my bowels roll their eyes

journey

2009-08-14T19:04:00.003-04:00

it was only a few months ago when they got the news
when the months of nausea and strange pains and swelling made sense
when it appeared that nothing will ever make sense again

so begins the journey
the journey they never wanted to be on
their season tickets to the theatre are traded in for hospital parking tickets - lots of them

cue alison krauss and robert plant singing...
oh my darling
my darling
my heart breaks as you take your long journey

they'll come 2, sometimes 3 times a week.
and sit in the window seat
he'll get her water
and stroke her hair

he'll read to her
sometimes from the newspaper
sometimes from the bible

i'll offer him coffee, juice, a pillow
he'll say no thanks
maybe because he doesn' t want them
or maybe because he feels he's on duty

he'll watch her as she sleeps
i'll watch him look up, breathe deeply, then grab her hand and lower his head

oh the days will be empty
the nights so long without you my love
and when god calls for you i am left alone
but we will meet in heaven above

they'll come week after week
she'll get smaller and smaller

we'll get the call one morning from the hospice nurse
that she died overnight
those of us who cared for them will take a minute
just a minute in the back room to let it sink in
maybe to hug a little, maybe to swear a lot

god's given us years of happiness here
now we must part
and as the angels come and call for you
the pains of grief tug at my heart

there will be people and flowers and prayers and casseroles
all intended to apply pressure to that emotional hemorrhage

one journey ends and another begins
i hope there is someone there to get him water
and stroke his hair and read to him
as he embarks on his odyssey of grief

news

2009-03-11T22:08:00.003-04:00

sometimes it's simple:
your insurance just approved this treatment
your cultures are negative
your x-ray is clear

then there's the other kind. the kind that changes everything.
and as the nurse, you know.

you know the result because you've been checking for it compulsively

you know the doctor told her he would call her today with the result

you know at this moment that she is trying to casually fill the minutes of her life until he calls, checking occasionally to be sure that the phone is working, and that the ringer is on

you know that at this moment that doctor is skiing on another continent and won't be calling

you know you have to call

calling with bad news strips you of all the tools you need to humanize it. you can't lock eyes or lay a hand on a shoulder or hand a tissue. words are all you have and they are just usually not enough.

that feeling...that feeling of dialing, slowly, wishing you could be doing just about anything else, quickly sorting through in your mind what to say and how to say it, knowing your tone will be read in the first hello, knowing this call will be remembered, knowing you just have to spit it out. ugh.

it starts out well and you say hello, and state the facts , and tell her how sorry you are. all too often you then decompensate into some adrenaline-mediated mish-mash of apology or silver lining or offer of hope intended to soften the blow. it's really hard not to even though you both know the score. it's hard. it's hard to demoralize someone. it's hard to know that their life has just changed course down a path they never wanted to be on. it's hard to know that whatever we did didn't help.

after a few quesions, she'll say, 'thank you for letting me know'. and you'll say 'you're welcome', as dumb as that sounds.

soon enough it's over and you're moving on to the next chart, the next note, the next patient, the next call.

at the same moment, she's making calls too - to the people who love her and she's saying, 'the nurse called. it's not good news'.

back

2009-02-20T14:13:00.002-05:00

...to work...sigh.

alarm goes off
make sure baby is breathing
baby is
take shower
listen for baby
dry hair
listen for baby
get dressed
drink coffee
baby cooing
get baby out of bed
take long slow swig of warm baby neck
watch baby's delight that his feet are still there
feed baby
burp baby
take long slow swig of warm milky baby neck
attach baby to hip

set out jeans and t shirts for big boys
remember it's gym day - excavate sweatpants out of basket - replace jeans
get big boys out of bed
ask boys to get dressed
set out breakfast plates
slice apples and artfully display on plates
ask boys to get dressed
decant breast milk into bottles
gather breast pump parts into handy travel bag
ask boys to stop jumping rope and get dressed
safety pin strap of handy travel bag that breaks with the third use
realize i'm starving and eat artfully displayed apple slices

baby crying
change baby
suction giant boogies out of baby's nose
take long slow swig of warm baby neck
sniff ears while i'm at it
baby cooing

come down to find boys miraculously dressed
and making themselves toast
review facts with 8 year old for quiz on Brazil
remind 7 year old to take completed project to school
wrestle drum, sticks, and music stand into ill fitting drum bag

inlaws arrive
kiss everyone
drive away
drink breakfast

arrive at work
turn on computer
check messages
erect breast pump
go see first patient
document
see patient, see patient, see patient
document, document, document
spend 30 minutes looking for 1/2 gallon of urine that patient has lost somewhere between car and waiting room
break it to doctor that urine is lost and tests can't be run
doctor to me: 'did you look for it?'
me to self: 'why didn't i think of that?'

run to office
pump breastmilk while returning phone calls
tell people i'm calling that i don't know what that strange noise is
forage in desk for nuts and berrries: find nuts, no berries
down nuts
see patient and document
repeat x 4
return to office
call husband who says, 'if you leave now, you'll be home in time to feed him'
leave now

arrive home
greet all
lucious baby grin quickly fades to a 'where you been, Missy?' wail
feed baby
the next few hours: attend to the feeding, watering, bathing, and educational needs of various small people
tuck in said small people
read to said small people

take deep breath
find husband who i have pased in the hall several times in the last few hours
kiss husband
watch episode of The Office with husband
laugh ass off
shirk various domestic responisbilities
go to bed.

thank God i'm only working part-time
it's the stage of parenting that i'd crave if i didn't have,
mourn if i lost,
and will too soon be over.
but it takes stamina
which some days you have and some days you don't

i'm pretty tired.
note to self: get some laurels
so i can rest on them

no words

2008-11-07T11:01:00.004-05:00

there are no words

for the sensation of pushing a new life into the world

the life that you have cared for the last 9 months

the life that kept you awake some nights and alive some days

and there he is

the face you recognize from the sonogram

the warm bluish limbs flailing around on the very belly in which he resided 1 minute before

there is a swirl of activity and noise and cheers and tears

and all you can say is thank you. and welcome.

there are no words for the feeling of adding another member to your family

for watching the big brothers race in, throw down book bags and race to hold him

for the colossal sweetness that is newborn

for the head of thick black hair

for the general lusciousness of it all

that's a lot of words considering i said there were none

love will do that to you

prayers

2008-08-13T10:59:00.005-04:00

Mr. K died quietly last night in his sleep. he was supposed to go home to hospice today. arrangements were made. family was coming in to town. his wife had gotten to a place where she was "ready".

"I prayed, damnit!", she cried angrily. "I prayed we'd have one more week together. after everything we've been through, was that too much to ask?!" she is deeply wounded by what she sees as the final insult from an unforgiving enemy. i hug her and tell her i'm sorry. i'm so sorry.

and i am. but he had very few platelets and esophageal varices. if that means nothing to you, let me just say that his life could have ended with blood. a lot of it. blood the likes of which his family can't imagine and would not soon forget. instead his heart stopped while he slept. he shed no tears and not a drop of blood.

it was either Jesus or Garth Brooks, i can't remember which, who said that sometimes God's greatest gifts are unanswered prayers. i can't help but think they were all given a gift.

cancer is a beast. all too often one finds themselves praying for the lesser of two evils for their loved ones with no good choices left to hope for.

i suspect she is one of those who may call me in 3 or 6 months wanting to talk...looking for a few answers or a new perspective. if she opens that door, i'll tell her what i think.

for now, i'm not about to interrupt her raw state of grief with my perceived silver lining.
for now i'll just say i'm so sorry.

mother lode

2008-08-08T20:09:00.003-04:00

you eat
you move through your day minding your own business and are overcome by a craving. not a "wouldn't it be nice if i could have..." - no, this is some fight or flight primal "i need an avocado or i will DIE". mr. oncRN is sympathetic to these internal death threats i get. he'll often call when he leaves work to see if there is anything i NEED.

you watch
the metamorphosis of your own body. you're aware that all manner of flesh is being laid down. i understand the need for the weight gain. the belly? of course. the hips and breasts? sure. the backs of my arms? not so much. seems totally unnecessary to me.

you worry
what if it won't eat?
what it it won't sleep?
what if it's a republican?

you lie awake
in part because the little spleen kicker is awake too.
in part because you ate pad thai. and then m&m's.
in part because your mind races with equal parts awe, excitement, and fear

you love
the kicks
the privilege
the percentage of lycra in your clothes
your husband's hand on your belly when you fall asleep

you field questions
when are you due?
do you know what it is?
why don't you want to find out?
what are you going to do about work?
was this planned?

thanksgiving. no. we like surprises. i don't know. who cares.

you pray
for the patient you are about to meet with who had to lose her pregnancy so that she could get chemo and live. it pains me to know that my presence will pain her. she congratulates me. we wordlessly acknowledge the truth that good fortune is not distributed equitably.

you prepare
i'm no expert but this is my third, so i know a couple of things. i know that despite what the baby stores the size of airports will have you believe, you don't need much. from what i recall you need breasts, love, and patience for the first few months. i have those.
and diapers. i'll get those.

brave

2008-07-30T15:51:00.002-04:00

i think it every day.
patients are so brave.
over and over i see them gritting their teeth, sucking up symptoms, taking risks for a potential benefit, fitting in treatments on their lunch hour, being patient with the phlebotomist who is having a bad day, returning to us...even though they know, at least in the short term, that it's going to hurt...that it has to get worse before it can get better.
but, somehow it's not the right word. it sounds cliche and insufficient. most patients would say they aren't brave - that they are just doing what they have to do. but it's how they do it all...with grace and focus.
it's all so scary sometimes. and they're brave. trust me. don't let them tell you otherwise.

sometimes doctors are brave too.
this one is one of my favorite species...the doctor/scientists. the ones who see patients but also run a lab... the ones who know what the most important paper is going to be this year...because they are writing it. the ones years ahead of the FDA in knowing what might work. the ones that often forego the enormous salaries of their peers, because their heart is in science...and science doesn't pay. the ones that, as a group over time, move the whole field ahead.

this one looked at a young guy whose options have run out
who has tried everything there is
who is going to die...soon
and he said, 'hey, my lab is working on something...we think it's going to work...it's nowhere near approval...i'm telling you this because it's what i would do'
and they throw up a medical hail mary.

and damned if it doesn't work.
today i looked at them, physician and patient, celebrating this most unexpected victory and felt grateful that they ended up together. another physician would have never had the knowledge to share. another physician might have covered his ass and not shared what he knew. another patient might have been too scared to try.
this patient was beaming today.
he told us today that he had canceled his trip to europe this summer, because he thought he'd be dead.
he isn't.

i felt like i was witnessing something great.
this doctor was brave...and may have saved a life.
who knows what will happen from here.
for now, though, this young guy is living and living well.
what else is there?

dad

2008-07-15T15:41:00.002-04:00

where was i? oh right, my sanity. i have spent most of this blog examining it - the ways my work tugs at the places in me to which i feel my sanity is anchored...worrying about the potential of losing the sometimes fragile grip i have on it...questioning if, in fact, all this examining and questioning might be healthy and might be the very definition of sanity...honing my tools of the trade for preserving said sanity - learning to invest in and care for people without feeling their pain to the point that i start to think it's my pain, etc, etc.

all that, in short, gets shot to hell when your dad becomes the patient. no small part of the aforementioned storm was his new diagnosis of cancer. in your memory it's a blur of belly pain, a phone call from your mother, an ER visit, a strained attempt to understand the english as a fifth language (EFL) resident that examines your dad at Podunk Memorial in your hometown, scans, more scans, masses being measured in centimeters, nerves getting frayed, calls made to inform and placate overseas siblings, tears, worries, frustrations...all leading up to a huge surgery where the best and worst facts of it are all revealed.

people, mostly colleagues, immediately start talking to you about how it must feel to "be on the other side". you quickly learn there's no such thing. you are who you are, you know what you know, you've seen what you've seen. it doesn't turn off because it's family - if anything, it revs up. when you're seeing patients on the first floor and your dad is recovering in a bed on the fourth floor, there is no other side. the daughter/ oncology nurse /employee of same hospital trifecta benefits you all in different ways, but makes you fall asleep in a pile on the living room floor more than once.

when the trauma of the surgery wanes and physical healing begins...when the facts are all known and next-step plans are made, you exhale. you all learn that it could be so much worse - you learn that he has a diagnosis for which oncologists can't seem to help themselves from saying, "well if you have to have cancer, this is one of the ones to get" - or my favorite "you're probably going to die from something else" - reassuring facts said in ways that are not at all soothing. you resist the urge to slap any of the kind people who keep saying these things but add to your own mental list of Things Never to Say to Another Human. ever.

so he's left with some cross between a blessing and a time bomb inside and life all but returns to normal. somewhere between despair and relief you get to share that he's going to be a grandfather again and you all celebrate in the juicy cliche handed to you at this key moment - that life does go on.

you and he, arm and arm, stride out of your hospital each with radiology films under your arm - his showing a mass, yours showing a fetus- neither of you pretending to know for a minute what the future holds.

love you dad.

storm

2008-06-23T14:00:00.004-04:00

it's been an interesting stretch of life. not like any other i have ever had.
i have been lucky to live the bulk of my life without tragedy and suffering in the circle of people closest to me. i always thought that was one reason i was able to handle such an abundance of both at work. it was a different world.

it feels a bit like my worlds have collided.
there have been one too many family members, friends of the family, and friends of friends who have had a few symptoms, seen a doctor, had some tests, and gotten the worst news of their life.
and of course there is my dear friend, trying to navigate this new life she has been handed, sans the love of her life.

what has become crystal clear is that there is no magic pill, no silver bullet, no conventional wisdom, no piece of scripture or words of Rumi that can help a family face the loss of their dreams. no matter the support available, it is still a pill they need to swallow. some will chase this pill with sugar, some with bourbon, some with ipecac. as a nurse, friend, daughter, loved one, all you can do is be there and meet them where they are.

lest anyone think i sound cynical or depressed or hopeless....i'm not.
quite the contrary.
i, too, had a few symptoms, saw a doctor, had a few tests and they found this:

sometimes the joy that arises in the midst of the storm is the sweetest.

serenity

2008-03-03T15:04:00.006-05:00

you're not ready to use the past tense when you talk about him.

you don't know how to process the beautiful and harrowing truth that life just goes on.

time....patience....i know.

my friend - she's surviving. in so many ways, she is what she has always been. she's suffering, yes - she's also poised and beautiful - she's rock solid in her faith and her role as a mother.

she's jackie o.

then you see the kids and feel that all your crying isn't enough - that you should be bleeding. your boys are always asking you what super powers you would choose if you could - now you know - you'd make yourself a giant sponge and absorb all the pain and sadness and fear from these kids so they'd feel whole and safe and happy again. then it would just be a matter of finding a place to wring that sucker out.

you have a wonderfully surreal life moment when, in telling your patient that you'll be out for her next visit, you start crying because it's for the memorial service of your friend. she doesn't know that's why, but has never seen you cry and wraps you in an incredible embrace. you proceed to tell her the whole story because you have no professional boundaries whatsoever. you've provided her care and empathy and an ear for the last year and a half, and now it's almost as if she welcomes the opportunity to return the favor. tragedy is a leveling force, that's for sure.

you realize that there is nothing to say and nothing to do to make this better.
so you pray that god will grant her the serenity
to accept the things she cannot change
the courage to change the things she can
and the wisdom to know the difference.

and you ask the same things for yourself while your at it.

always

2008-02-22T22:20:00.003-05:00

you're driving home. you call your husband to say you're stuck in traffic. you see lights and a helicopter in the distance and know that someone is having the worst day of their life.

hours later you get a call. it's your oldest friend who's having that day. it was her husband in that helicopter. her husband who died. your friend is a widow at 36. with six kids. six.

you hear the words the woman on the phone is telling you, then you can't hear anything because someone is screaming. it takes a minute before you realize it's you. your husband comes running, 'what happened?! what happened?!'. you tell him and watch his face fold and his body collapse onto the bed heaving and shuddering.

you know you have to go see her, but you're hesitating. you tell yourself you're hesitating because of the snow, but really you're just afraid you won't come back.

you enter the hospital you left hours before. you feel like you're staggering and wonder if you really are. you see the waiting room and feel your heart drumming and hear it thudding in your ears. the room is full. full of women your age, heads in hands, hugging, gasping for air. full of men your age, hands stuffed in pockets, pacing, rocking, sniffing. she sees you and crumbles. you feel her weight pull on your shoulders. you feel her wails in the side of your neck. you hold and tell her you'll be here always - both of you knowing full well there's no such thing as always.

you've been in the presence of death so many times. you've held its hand and felt its breath and showed others the way the best you could. now you realize that sudden, unexpected death is a different beast altogether. it's violent and explosive. it's rip your heart out of your chest raw.

you return home. it feels like something has burned a hole in your stomach. your eyes feel swollen, like there's cotton balls shoved up under your lids. you're walking funny. you go in their room and lay a hand on each chest - feel the rise and fall for just a minute. they don't know yet. you envy their peace.

you crawl in bed beside your husband. you'd crawl inside his skin if you could. you wordlessly intertwine and press and sink into each other, but can't seem to get close enough. with puffy eyes and clenched hearts and tangled bodies, you flirt with sleep. you hear a whimper occasionally and you aren't sure if it's him or you.

the day after finds you even though you tried to hide. you hold their hands and tell them what you know and how you feel. you learn a lot about your kids this day...what they're afraid of...what they believe in...what they worry about...how their minds are organized.

'so who will be my soccer coach now?'

'who's going to help max put on all of his hockey gear?'

'how can you be so sure he's not coming back?'

'how long will your heart be heavy?'

you feel, in this moment, that you can't possibly heal...that you'll never stop crying...that pure joy is gone. and that's just us. just a filament of the grief they must feel.

dear one, i'd give anything to wake you up from this nightmare.
whatever always is, you have me for it.

skin

2008-02-15T23:34:00.000-05:00

the largest organ...the barrier...it breathes...it protects...it blushes...it gets cut and heals...it sweats...it glows...it toughens under the sun's rays...and wrinkles in water

the skin of my patients shows they've been to hell and back.

there are scars. thanks to biopsies, catheters, needle sticks, vaccines, rashes, iv's, skin grafts, feeding tubes, trachs. vivid, wordless legacies that recall suffering and fear...and healing.

there are colors. if you've never seen them, i'm glad for you. few things rattle me as much as running into a patient after a few months and seeing a sick complexion. their eyes and their smile and their hug tell one story, but their skin tells another. it's a yellowish, grayish, non-humanish hue that can bring tears to my eyes in an instant. a color that makes me want to know if they've been down or if they're going down. that makes me want to ask, 'what the hell have we done to you?"

there are messages. it turns yellow when the liver has been insulted. it gets bumpy and itchy when the immune system doesn't approve of a certain drug. it gets baggy in strange places to show weight loss. it goes numb when a nerve has been injured. it gets rather ornate when the blood is not clotting well. it lets go of heat to inform us of a fever. it's a good communicator.

to hell and back. back being the key. they are back every week. and friday nights they flip throug my mind like a slideshow. a show that i have often tried to cancel or unplug or drown out with red wine. i'm letting it play tonight - it's healthier, i know. not that there's not wine involved - which i hear is healthy also.

night

2008-01-28T21:06:00.000-05:00

sometimes i wake up suddenly for no particular reason. and even though it's the middle of the night, and i have to get up early, and i reeeeeally want to be sleeping, it quickly becomes clear that it's just not going to happen. so i reluctantly leave my warm bed and the steady even breathing of my husband. show off.

i get up and pad around quietly. i always feel like i'm robbing my own house. like if i got caught i'd have some explaining to do. i lie down next to the warm little bodies i tucked in several hours before, and do a little re-tucking. i listen to them breathe. i feel their heads to be sure they're not cold. i tuck the hippo back up under the arm and turn up the heater a notch.

i remember a time when most of my friends were single and/or living fairly carefree lives and you could call at any hour. it wasn't unusual to make or receive calls in the middle of the night. now i sit and wonder who i could call. everyone i know has kids or works early or really wouldn't want to be woken up just to chat. and since when do i like to chat? i don't . i think it's just the acute sensation of being alone with myself. so rare these days. my instinct is to reach out. sometimes it's too scary to reach in.

i think. and wonder. and worry. and read. and stretch a little. and yawn. and read some more. and get some water. and wonder about all that worrying. and worry about all that wondering.

i'd love to have a drink. but my genes aren't to be trusted with such things. plus, i don't think 'drinking alone at 2am more' was one of my resolutions. or maybe it was - right behind start smoking and eat more lard.

witness

2008-01-24T21:30:00.000-05:00

dear doctor,

for what it's worth, i saw it all. i saw the dread in your eyes, and your chest deflate when those labs popped up on the screen. i saw you squeeze your fists together and gently rest your head on them. then i saw you psych yourself up with a sip of your coffee and a deep breath.

i saw you wince at the hope and lightheartedness in the room when we walked in. i saw you greet them and eek out a smile. when you started talking, and he grabbed his wife's hand, i saw you pull on your collar with one finger tip, like someone had just cranked your tie tighter. i saw your foot, that ususally circles calmly while you talk, swinging sharply back and forth.

i watched you dig for the right words. when they didn't come, i saw you slide your chair closer, put your hand on his knee - and then hers. we all heard you say, 'we're not through fighting this". i saw them exhale for the first time - probably more from your hands than your words. i saw them sift through fear and devastation and gratitude for your care - leaving them with a morsel of hope to nourish them through this next phase.

i watched you leave and return to your desk. when i put my hand on your shoulder, i felt it sink and saw your chin fall to your chest for just a second.

then, like a prize fighter, i saw you roll your shoulders back, pull once more on your collar, pick up the phone and dictate your note.

one down, twelve to go.
it's going to be a long day.

for what it's worth, it's so important what you do. and you do it well.

thanks.
and peace.

wonder

2007-12-31T16:37:00.000-05:00

i wonder.
a lot.
about this whole life and death business.

you call because you care and you worry and you wonder.
but beware, it could go something like this:

me:
hey, did mr. d get discharged?

her:
(awkward oncologic silence)

me:
oh my god! what happened?!

her:
i’m so sorry. he died on sunday.

me:
oh my god……..anyone else?

her:
mr. c. last night. i’m so sorry. i was going to call you.

me:
oh my god…… geez……… shit.

note to self: do not call while on vacation to check on patients.
information you learn could negate the ‘vacation’ part of the vacation.

so let me get this straight. life goes on without me. and so does death. and i can’t always be there. not that i want to be or anything would have been different if i had. it’s just that i’ve sort of been assigned as their personal escort through this last phase of their life – and i should have been there. damnit.

‘what’s wrong mommy? did one of your patients die?’
‘actually two died.’
he hugged me and brought me his stuffed hippo and asked the obvious question,
‘so, do you wanna play yahtzee?’

mourning fog. you feel like banging one side of your head like after swimming – maybe the grief will leak out and you’ll be able to hear and think again.

but you blow through the grief express lane. then you roll a large straight – in one roll! you coast on your yahtzee high for awhile.

there was foreshadowing before i left and i made a special point to see mr. s. he was the one i was really worried about. the frail one. it feels like we’ve been waiting for the other shoe to drop with this guy for weeks – and that sucker just won’t drop. he keeps hanging on. more than that – he’s actually improving. that said, he’s old, sick, and tenuous. he hugged me and told me to relax. i told him how well he is doing, how well he has done, and how much i admire him. i said farewell without saying good-bye.

but i couldn’t see everyone. and i didn’t see the two that died. and now i can’t. that hurts and frustrates me in a way i can’t quite describe.

these patients…..god, they are fragile. literally clinging to life by a thread. a thread that we may be able to fortify or weave into something stronger – or a thread that could be unexpectedly snipped in an instant.

it was a glorious vacation. it was memorable in so many ways – for the blue skies and good air and fresh fish. memorable too for the loss and the book that found me afterwards. the books i need have been finding me for years. it works out great. Eat, Pray, Love fell in my lap – well, right after i bought it. it was a perfect companion to my 24 hours of soul searching that needed to take place. i didn’t connect with her story as much as her voice and the idea….eat, pray, love – what a mantra. what a mantra for grief management...or just for life. it’s one of the best i’ve found yet.

full day

2007-11-15T22:52:00.000-05:00

taking care of cancer patients every day makes me:

inspired

appreciate my body

wonder how i will die

want to get a cbc everytime my gums bleed

cry sometimes for no reason. or for every reason. depends on how you look at it.

hug excessively

a wee bit self-righteous about my work being harder than other people's

grateful

invigorated

want to snort lines of antioxidants

exhausted beyond comprehension

really bad at the whole planning for the future thing

a more sensitive parent

irritated with god

...sometimes all before 9:00am

waiting

2007-10-21T18:34:00.000-04:00

sometimes i dread the waiting room. truth be told, if i could scale the outside wall of the building and rappel down the other side to avoid walking through several time a day, i would. it's not the conversations i'd like to avoid, it's all the eyes.

everyone is there waiting for something they don't want. they're anxious. they're inexplicably bored by the Architectural Digest circa 1998 littering the end tables. they're unimpressed with the accommodations that focus on the pretentious and are a little light on comfort. personally, i say screw the hardwood floors - people need windows, skylights, plants, truly comfortable chairs, complimentary chocolate.

walking through is sometimes uneventful. more often, though, it's a series of greetings - waves, smiles, occasional hugs. it's patients giving quick updates on their cancer and their lives and the book they just read and the pictures from the wedding last weekend. i live for that stuff and the potential of it happening each day is my greatest motivation to keep coming in. if only it didn't have to all take place in the waiting room...with all the eyes...and all the ears. i hate the idea of my sad, just relapsed, sick patient seeing me laughing and celebrating across the room. i hate the idea of not being able to laugh and celebrate with my patients that are looking to me for that.

i was a inpatient for 5 days while in pre-term labor with my youngest. the unit i was on had an interesting mix of patients...some that had just delivered, some whose bodies were trying to deliver way too early, some who had just lost their baby, for one reason or another. outside each private room, the staff would place a picture - their own code to remind them which scenario was on the other side of that door - a blooming rose for the new mother, a evergreen branch for those of us scared and waiting, and a dew drop on a leaf for those grieving. i remember thinking how hard it must be to be a nurse there - to have the happiest day of someone's life in room 8 and the absolute depths of grief in room 9.

the waiting room reminds me of this unit. only there are no botanical cues - only memory and instincts to remind you where everyone is - and what they may need. everyone wants and needs something slightly different from you. it feels like a day's work sometimes to try to give it all.

regret

2007-10-18T21:51:00.000-04:00

there’s a lot to be said for being your own best advocate. for knowing as much as you can know. for standing up for yourself. for educating yourself. for questioning.

sometimes there’s even more to be said for listening to the experts. for knowing that all the googling in the world can’t take the place of the thousands of patients this doctor has treated over 3 decades and the experience she has gained doing so. a physician that has devoted her career, if not her life, to one disease. a physician that is looked at as a resource by her colleagues across the country. it’s not that she can’t be wrong, it’s just that she’s worth listening to.

i knew when i met her that her disease was bad. it was the thinning in her hair, the skin color that was indescribably off , the splitting nails, the sunken eyes, the body that looked like it had been fighting a demon for quite some time, despite just being diagnosed. she was an avid life-long athlete, a textbook go-getter, a type A googler who would arrive with printouts and abstracts and pie charts and demands. but over and over i saw her back this doctor into a corner. with her stack of abstracts and an ever subtle whiff of litigation in the air, she would dictate what she wanted, and because it was all within the realm of reasonable, it was all done. over and over i heard this doctor say, ‘there are no right answers, but this is what i recommend’, and she would invariably do something differently, all backed up with evidence of her own.

i’m not surprised her body isn’t winning this one. it almost looked defeated from the start. but i can hear the regret in her voice, and it breaks my heart. she’s doubting choices she made, wishing she had listened more, wishing she had let herself be led.

we’ll never know how, if at all, things could have been different. and quite possibly we are witnessing the best possible outcome for her. but she is regretting sitting in the director’s chair. that is a burden all its own.
that is a cross i wish she didn’t have to bear.

gray

2007-09-16T19:24:00.000-04:00

when a colleague dies, business as usual disappears and everyone walks around with their heart at half mast. there’s a fog and a confusion that is exchanged in wordless glances . there are puffy eyes, heavy sighs, and lots of tight- lipped sympathetic smiles.

when that colleague dies of cancer, it’s worse. it’s more unbelievable, more sad, more wrong. there are too many levels of tragedy and irony.

i’m glad it was gray and cool out. bright sun would have felt like an intrusion or like the skies were celebrating, and that would have felt wrong.

if i wasn’t already, i am officially the town cryer. ‘i wish i could cry freely’, one of my physicians said. ‘it’s a gift’, i told him drawing a tissue from the holster on my hip.

13 years

2007-08-13T12:24:00.000-04:00

one of the only things i know for sure is that starting and ending my days with him casts something wonderful over my life. it's a twice a day scheduled dose of warm and calm and right. i love him.

there's not much not to love. men love him because he is such a guy. he instinctively knows how to build or fix anything. he's a natural at climbing a mountain or kayaking a river. women love him because he does that and everything else without toxic doses of machismo and swaggering. when i met his work friends for the first time, the biggest and burliest stepped forward, shook my hand and said, 'hi, you must be sweetie.' now that's awesome. there are entire books written about how to 'get' a man like him - kind, loyal, supportive. and when i say kind, i don't mean nice. nice is everywhere. nice is....nice. but kind is in the blood or bones or spleen or cells or something. you can't fake kind.

he understands stability. when he built our house he would always tell me - 'invest in the things that you can't change - the things that ground the house.' so we did. we spent a lot on a fireplace and brick all over and windows - tons and tons of windows. and he was right, of course. and no matter what changes we make from here, those 3 things make it our house.

and beware of flying metaphors, but i can't help it. because marriage is the same. in a couple, you build and reinforce and put on additions and then find out that it's not to code - so you tear down and plan a little more carefully and build again, repeat, repeat, repeat. and as much as you change the look and the color and the feel of things, your supporting structure is always the same - and it's either strong enough or it's not. ours is.

i admire his life that seems to have such a quiet clarity of purpose. he loves being the husband and father of this family. and he's so good at both. the simplicity of it all gives it a sort of grace or elegance. or maybe that's just compared to the bumbling and fumbling through life of a certain oncRN who shall remain nameless. truth be told, we here at oncRN are not entirely sure why he loves us as much as he does. and it's not that i'm undeserving or unlovable - but what is it that makes someone love another so deeply, so completely, so calmly. i don't know, but it, to date, has been the greatest gift of my life.

i am deeply grateful to god or fate or the universal attractiveness of the mullet or whatever other force that drew me to him two decades ago.

cheers, baby!
i love you.

"...nor is it strange that after changes upon changes we are more or less the same."
paul simon - 'the boxer'

things i could live without

2007-08-09T13:37:00.000-04:00

realizing 4 minutes into a 12 hour shift that i've made a horrible underwear selection.

the expression 'nuff said'. i just become aware of it and i don't like it. i thought it was a little cute the first time it was written to me in an email, but i'm over that. today i saw a bumper sticker that said Hawaiin - nuff said. no, not nearly nuff said. i don't know what you're saying.

other people's phlegm. don't want to hear it expectorated. don't want to step over it on the sidewalk. don't want to wrestle into a cup to send for culture. just don't want anything to do with it.

the expression 'be that as it may'. nuff said

that zit on my chin that seems to have its own pulse

the practice of carrying small dogs in purses

that thing where you take care of a patient for 12 hours straight, spending most of it face to face doing mouth care, suctioning, re-arranging oxygen masks, feeding, etc and then come back the next morning and everyone who goes in the room needs to wear this

nurse secrets vol. 1

2007-07-19T22:14:00.000-04:00

misery

2007-06-27T14:10:00.000-04:00

she:
wasted.
starving.
cancer is leaching her body of everything it needs to look and feel well.
the eye sockets tell it all.
hollow.

he:
hands - wringing
knuckles - white
legs - wound tightly. like DNA
foot - swinging urgently
eyes - tearing
brow - furrowed
worried - sick

one cancer. two patients.
heartache all around.

she: 'can i smoke pot...for the nausea...for the misery?'
me: of course

i hope they both smoke it.
maybe i should have given them a prescription for Doritos.

thanks

2007-06-14T09:11:00.000-04:00

i love that feeling - being the bearer of good news. telling the alpha male body builder with leukemia that we can barely detect his disease - that his numbers are the lowest they've been in 4 years - that what we did appears to be working. it's worth a thousand bad days at work to see him well up, rise out of his chair and give me a big alpha male body builder hug. my feet left the ground. he hugged me so tightly that even through a pectoralis the size of my head, i could still hear his heart racing, pounding with incredulous joy. 'thank you. thank you', he kept repeating while balancing eyelids full of tears, willing them not to actually fall. he gave the doctor one of those testosterone-mediated aggressive handshake/back slap combos, but i know he really wanted to kiss him. silly men.

when things go badly, i always hear myself saying, 'i'm sorry', and patients race to say, 'it's not your fault', which of course i know. but when things go well, the same patients say thank you in such a way and with such an intensity - as if i had gone in there myself and tidied up their bone marrow with my own hands. they hold us responsible for the victories in a way that they don't hold us responsible for the failures. at least that's what it feels like. and even though i know i'm not responsible, i say, 'you're welcome'. the intense gratitude makes me feel like a superhero for a minute. that is until i go to leave and through a brief series of ungraceful events, catch my stethoscope on the door handle and almost hang myself, pretty much negating the whole superhero thing.

i love this feeling. i need to bottle it. and get a spritzer for the bottle. and apply liberally.

onkos

2007-06-11T21:20:00.000-04:00

from the greek roots index:
ONCOLOGY, from Greek... to carry... with derived noun onkos, a burden, mass, hence a tumor.

a burden indeed.
the burden of disfigurement
the burden of worry
the burden of pain
the burden of hours spent waiting for appointments and results
the burden of needle sticks and missed needle sticks and biopsies and surgeries
the burden of being told you're one of the lucky ones and wondering when you're going to start feeling lucky

quote

2007-06-01T11:12:00.000-04:00

patient quote of the day:

we are going over the consent for a clinical trial and i am reviewing possible side effects. he interrupts and says, " you know i've had every weird symptom imaginable over the last 3 years. just hit the highlights - just tell me how high it's likely to register on my Weird-Shit-O-Meter."

that makes me want to design a clinical trial to study the WSOM and see if we couldn't standardize it for all to use.

great stuff

2007-05-31T20:40:00.000-04:00

ever just wake up feeling pissy? probably because you went to sleep pissy...probably because there was some combustible combination of fatigue, stress, hormones, and a family tiff colliding to form a perfect storm of discontent? me either. but some of my best friends are pissy...

at the risk of sounding like pollyanna in a white cap, my work is really good for this - for treating episodes of nondescript pissiness. it's virtually impossible to move from patient to patient listening...crying a wee bit (not the hormones - you can't prove it)...talking about some seriously scary shit and not emerge with an altered perspective on your own situation.

today the sadness and intensity were a soothing balm to my mini wounds, somehow filling in the cracks and making me stronger. it reminded me of great stuff.......at our old house, mr. oncRN used to spray this funky foam in the cracks around windows, doors, and any possible rodent portal and it would harden to the consistency of steel - and it was called Great Stuff. if for no other reason than its name, we loved it and denied many a draft and city mouse entry to our house. maybe someone sprayed it on me when i wasn't looking.

of course it can work the other way too. i can start the day put together tightly like a 400 thread count sheet, follow the same patient trail as today, and end up feeling like guaze.
and if you see a loose thread...please don't pull it.

gambler

2007-05-15T20:49:00.000-04:00

'guess where i am?'

'on your way in to see me for your appointment in an hour?'

'nope. vegas.'

'reeeeeally. that's funny because after your transfusion yesterday you said see you tomorrow!'

'yeah i knew you all wouldn't think it was a good idea, so i just kept that to myself. i just had to get out - get away, ya know? i'm a risk taker, remember? i told you that the first day you met me.'

'yeah, i remember. but i also remember that you asked us to save your life and you being in vegas is going to make that significantly more difficult. and can i just say that, as a person, i have so much respect for you right now but, as a nurse, you are freaking me out.'

'oh now i didn't call to worry you. i'll be back for my next appointment, i promise.'

'why did you call, then?'

'to find out what your lucky number is. i'm putting down $20 on the next spin?'

'22-red. and never split aces and eights. or something. my husband taught me that.'

'you don't know what you're talking about, do you?'

'not really.'

'well, i'll explain it all to you when i get back. wish me luck!'

click

i hung up the phone feeling mildly indignant for having been duped the day before and at the same time brimming with admiration for this guy that is doing what he has to do to stay engaged in his own life.

i think i was also humming - you got to know when to hold 'em...know when to fold 'em...

god i love these people.

real

2007-05-03T13:43:00.000-04:00

i first met her in February. she was preparing to enroll on a clinical trial and she, her husband, the physician, and i met to talk about it.
'she's a fighter, doc', said her husband tearing up and beaming at the same time, "that's why we're still here".
i loved that he linked his own survival to her ability to fight - we're still here.
'you gotta get us to October, doc...it's our 50th anniversary. we gotta see that together'
'we're going to do everything we can...i can assure you of that,' said doc thinking, as i was, that October never seemed farther away.

she had ample opportunity to display that she was indeed a fighter. she had pain that we couldn't figure out along with the constipation and confusion from the narcotics for the pain that we couldn't figure out. she had fevers that wouldn't abate and full body rash from the antibiotics for the fevers that wouldn't abate. she was caught in an all too typical drug / symptom - another drug / triple the symptoms scenario that is so hard to break out of. her leukemia responded well, but the rest of her didn't and she eventually went back to her home state to get less aggressive treatment closer to home.

her husband emailed me her obituary today. 'Her fight is over', he wrote in the subject line. it was a beautiful picture of her in her prime and her wonderful story, so much of which i hadn't known. my instant reaction was a little ache in my stomach when i saw her healthy, and when i realized how we and our treatments had made her unrecognizable. i thought to myself for the millionth time...how can we do this to people? are we serving them? but the rest of his note reminded me. he thanked us all repeatedly for the extra time we had given him with his wife. it was hardly all quality, or life as they had known it previously, but it was as he stated 'a little more life to share with her'.
that's why we do it. that's what we try to give.
it reminds me of The Velveteen Rabbit when the horse explains how love makes you real.

"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
...
"The Boy's Uncle made me Real," he said. "That was a great many years ago;
but once you are Real you can't become unreal again. It lasts for always."

witnessing the love of devoted spouses... holding hands through the darkest hours...sitting vigil ...praying...crying...sobbing...laughing...saying goodbye...letting go.
just being a part of it makes me feel real.

i hope it does last for always. i don't ever want to become unreal.

worry

2007-05-01T09:24:00.000-04:00

Dear young oncologist,

Please banish this response from your repertoire,

"We'll tell you when to worry", complete with a sympathetic smile and a pat on the knee.

she's 38 and has 3 children and in incurable leukemia, you as her physician are not in control of her worrying. of course she'll worry no matter what you say or don't say, no matter how she responds to treatment - she'll worry. it's neither insightful, nor helpful, nor therapeutic to suggest that she shouldn't or that you are capable of relieving her of that. it's patronizing and paternalistic and lazy. don't you see that?...that sinking in the eyes and the spirit when she brings up her deepest fears and you shut her down with a superficial canned remark like that?

i hope for you that your humanitarian side will catch up with your intellect and that you will soon know, instinctively, that is just not a kind thing to say. and if you misspeak, as we all do sometimes, that you will catch yourself, backtrack and say 'i'm sorry, that was a silly thing to say. tell me what you are worried about.'

sincerely,
a concerned oncRN

*** i did attempt to bring this comment to the onc's attention. kindly and diplomatically, i thought, i told him, 'you know in my experience it really rubs patients the wrong way to tell them not to worry....etc' he had no ears for that and didn't appreciate the tip. and i'm pretty sure i saw him adjust his pants, and puff out his chest a little, and all i could think of was this. oh well, all you can do is try.

something

2007-04-27T15:57:00.000-04:00

i'm having this unbearable urge to write something, but all the ruckus in my head is refusing to form itself into meaningful thoughts or stories. so how 'bout this instead...

the train lost power this morning and we had to sit underground for an hour. after several minutes of nothing - as in no announcement acknowledging that things had become very dark and sedentary - we were herded, a la holstein, all into one car.

it might not have been so bad if they didn't keep saying 'it'll just be another 5 minutes'.
and it might not have been so bad if they didn't keep referring to the train on its way as 'the rescue train'.
and then there were the 8 cops that appeared out of nowhere and positioned themselves throughout the car without explanation - that was soothing.

people were upset. what started out as casual morning banter at this mild inconvenience turned to some sort of aerosolized anxiety that blanketed the car. i didn't inhale. i swear. i just sat and read under the dim light of the emergency exit sign. i moved when they told me to. i tried to ignore the heavy sighs and growing agitation around me. it did occur to me at one point that maybe there was some crisis that they weren't telling us - thus the multitude of cops. so i text messaged my husband, ya know, in case i died, then resumed reading.

eventually, the rescue train arrived and we were indeed rescued. all in all it wasn't so bad - i plowed through 4 chapters in my book and missed a meeting i didn't want to go to anyway.

i'm glad i didn't die. that was NOT one of the bullets on my to-do list today.

hope revisited

2007-04-04T21:02:00.000-04:00

leave it to Cathy to notice it was my blogiversary before i did. such a good blog mom. it's strange to read the first post and remember. some of those early posts felt like emotional vomiting. they were true purges and i remember i would feel tremendous relief after writing them. even more relief after i brushed my teeth. that was my impetus for starting a blog - to purge. to release. to get it all out.

but it quickly turned into more. this whole public writing process helped me face for the first time the ethos of my childhood that had seamlessly become the pathos of my adulthood - no one is listening. after a year of generous readers leaving comments and emails- after my last post where i received some of the most amazing visitors with incredibly thoughtful comments, i feel obliged to let that idea go. people are listening. maybe they always have been. maybe now i just have the proof.

there is that old adage (or maybe it's a fact) about the inuit having 100 words for snow. reading back over the year, i seem to have at least that many ways of saying that this work hurts. that, i know, is a fact. writing about it gives it another dimension for me - a dimension that was missing all these years. seeing the stories in print, feeling them all as part of my history, accepting the interested and compassionate comments from strangers, knowing that people are listening...
all of it gives me hope.

thank you.

fog

2007-03-21T15:38:00.000-04:00

when i leave work after a patient dies, i expect the world to be different. and the fact that is isn't shocks me...every time. it leaves me in a fog - it's that i can't interact with anyone who hasn't seen someone die today fog. i don't want to be in solitary - i want to be among people, i just don't want to have to talk to any of them. maybe if i wear a pin that says something subtle, along the lines of:

my patient just died
please don't talk to me
have a nice day

i'm always afraid that some poor soul may ask me a question such as 'paper or plastic?' and that some force greater than me may blurt out 'who gives a shit?!'. thus far, this fear is unfounded. i always just answer 'paper'. that's usually where i end up, though - stores. i might browse clothing or shoe or book stores. i might wander the whole foods store - i'll no doubt leave when the sample lady asks if i'd like a few suggestions on how to work spelt into my diet. apparently she doesn't sense the fog.

where i end up is meaningless. i'm just processing. just wandering. all these places are just substitutes for what i really need which is a womb i can crawl back up inside and be fed and warmed and rocked back to a place that doesn't hurt. but i'm in target - no wombs to be found - so i reach for the king size snickers instead.

fyi - that womb/snickers trade-off is not half bad. it'll do in a pinch.
good to know.

i feel pretty....

2007-03-15T20:30:00.000-04:00

i was featured in a post by Shane who pointed out that the look of my blog didn't really match my style of writing. we here at oncRN agree wholeheartedly and decided to make a few changes. it's been almost a year since i started and i'm just throwing myself a little debutante-coming-of-age party.

when i travel, i take pictures of windows. i have a thing for them. they let us see out. they let us see in. they let in the light. they offer separation from the other side, but they also give us a view into it. as i was going through my collection, trying to find one to post here, it occurred to me that this blog has been a window of sorts for me. seeing the contents of my heart and brain in plain text has allowed me to see my career and my life and myself in a way that i had not been able to before. and, of course, it lets others see in.

if you're here looking in, thank you.

what the...?!

2007-03-02T15:00:00.000-05:00

i'm notoriously bad with song lyrics. i can only take comfort in the fact that my sister is worse. but we both have been know to butcher songs and proudly sing totally inane lyrics for decades at a time, only to overhear someone else sing it and say, 'wait a minute...what did you just say?'

a few years ago a sarah maclachlin song made its way onto the ipod and into multiple mixes and song shuffles. i always loved when it came up in the rotation and started to think of it as my theme song. the chorus (so i thought) said, 'i'm a dreamer waiting to happen.....' - not that 'dreamer waiting to happen' makes any sense per se, but i just thought it kind of described me in an artsy way. that's right, i thought i was artsy. i didn't know any of the rest of the song, but it was just catchy and spoke to me and i would find myself dancing with my arms above my head like i own the place, doing that thing i do where i manage to sing an entire song without knowing any of the actual lyrics. because, you see, that's what dreamers waiting to happen do.

just found out that it doesn't say 'dreamer', it says 'trainwreck'. just to re-cap, the chorus says 'i'm a trainwreck waiting to happen'....what the?! and it was my THEME SONG!!!
i'll just say, it explains a lot :)

have begun STAT search for new theme song

rain

2007-02-26T15:02:00.000-05:00

she could count on half a hand the number of times this has happened in her career. she got to leave early. the death was that bad, that horrific, that sad - the clean up was downright disturbing. for once, she wasn't told to take the next admission, she was just told to leave. so she did. it should have meant an unexpected trip to the library or the coffee shop, but it was 3am and her options were limited.

it is the middle of the night and raining - the rational thing would be to go home and go to bed. but she's never let rational get in the way of a really bad idea before and this would be no exception.

she drives in the dark - a voyeur to what her neighborhood looks like when it's sleeping. who knew there were all these stray dogs...they seem to own the place. there are no red lights, only blinking yellows. even the clubs are quiet - it's only tuesday, the weekend doesn't officially begin until wednesday here. she could hit the greasy spoon 24hr diner, but doesn't feel up to the other greasy patrons -she can see them slumped over coffee cups at the counter.
she'd die if she had to make chit chat right now. die.

the waterfront is calling her name so she parks and walks to it. she prays she doesn't interrupt some early morning conference of rats. they congregate by the water. she might even take chit chat over rats. maybe. it's all clear, and she takes a seat. sitting on the bench, she's vaguely aware that she's rocking in time to the docked boats creaking.

she can hear the water licking the wall several feet below her. with a gust of wind, the rain picks up, the drops bigger and faster. eyes closed, she stands perched on the edge. fully aware of the metaphor, she lets the wind blow her shoulders back and her arms out. her face tilts back inviting the rain which pelts her cheeks and rolls down her neck. she breathes the way she was taught in yoga - from the depths and loudly, forcing out the air. she breathes out the fear and the sadness plaguing her heart. she breathes out the young wife's sobs that are trapped in her ears. she breathes out the gnawing sensation in her gut. the rain takes care of the rest washing away her tears, and the bit of blood left on her shoe. breathing...washing...purifying.
she knows she looks crazy. she doesn't care.

a car alarm snaps the moment and the jolt almost lands her in the water. she's no stranger to the edge, though, and knows how to teeter without taking the plunge. she's back to reality - which she finds disappointing on so many levels. she is not Winged Victory and this sure ain't the Aegean. she's just a really wet, cold, albeit purified nurse who wonders why she's not home in bed. on the short ride home, she is equal parts amused and disturbed by her secret grieving practices. she couldn't have talked this one through with anyone, she tells herself. there was nothing to say. she's not crazy, she tells herself.
crazy is what she would become if she didn't get it all out...right?

a warm shower helps her close this chapter.
she slides into bed, wet hair splaying out on the pillow.
'everything ok?', he whispers
'everything's fine.', she whispers back, almost meaning it
'good morning, sweetie', he brushes a kiss across her cheek
'good night, baby', she kisses into the air

the docs

2007-02-22T12:54:00.000-05:00

i know i've been hard on physicians in other posts - mostly all in good humor, though. i can't help it - i'm very sensitive to absurdity. and at our weekly conferences, absurdity abounds. sometimes the discussion veers off to molecular chimerism or something equally over my head, and my mind tends to wander. i get obsessed with watching them - like jane goodall observing the chimps....the larger males argue raucously with each other in between various non-hygenic scratchings...the dominant females exhibit bizarre body language meant to convey indignation...both sexes shoveling in food like they haven't eaten in a week...young ones nervously gnawing on their cuticles. in my field notes i scribble:
1. i have nothing in common with them except opposable thumbs
2. if they start picking ticks off each other, i'm leaving.

but wait, this was supposed to be a post of praise...and it will be. recently i was privileged to witness one of the great ones. a true master of their trade who is able to merge their supreme intellect with their humanity - not an easy task for anyone. but to be able to do it on command, fluidly, repeatedly over the course of a day - that is a gift.

it's a pleasure to see a patient bond with their oncologist - to see the display of mutual compassion... to see the burden of an awful diagnosis somewhat diminished by the complete faith and trust a patient has in his doctor - not faith that he'll be cured, but faith that he'll always be heard and respected and cared for. i wonder how they do it sometimes - especially how they do it for 30 years...if they cry...if they take the long way home somedays...if they have an extra drink some nights...if they blog their way to better mental health. i've certainly felt pieces of it as a nurse, but i'm sure there are elements i have never experienced. they are the doctors - the healers - the experts - the lifeline - if anyone can cure the patient, it's them. i'm sure the intimacy and the intensity of it all are energizing at times, but some days, the impotency of being a mere human must be incapacitating. it must hurt somedays. even though it's not a personal failure, it must feel like it sometimes.

if i had a nursing cap, i would tip it to the great ones - for honing skills they weren't taught in medical school and for being a model for us all.

diving

2007-02-19T20:58:00.000-05:00

it was one of those days that makes you get in your car at the end of it and say wow...or whoa...or i can't believe i get paid for this...or did i pee today? the kind of day where you find yourself at the intersection of tragedy, hope, celebration, and grieving...once an hour...for eight hours. a day when it seemed like you might go under a few times, but you never did, and you somehow came out on top.

today started as an index card shoved in my pocket with 25 tasks to complete - each with a little checkbox beside it - each that needs to be done at a specific time - each that needs to be done well - really well. it feels like an art somedays, like a science on others - zipping from patient, to patient, to lab, to computer, to pharmacy, to patient, to computer, to patient, to patient, to pharmacy, to patient, to patient and not have it feel like a complete flog for everyone involved.

because each time you open a patient's door and enter, the zipping needs to stop. you need to give them calm, even if you don't have it. they can't know about the checkboxes. they can't feel like the vibrating pager on your hip is going to cut them short in their effort to talk about their pain. you need to be present- there - theirs... for the time you are in the room. it's an unspoken agreement - they know you're busy - they know they aren't your only one - but you're their only nurse today and you need to find a way to carve out an oasis of calm in the torrent of your day. they're counting on you for that.

some days you just can't muster the art or the science to make it happen. but some days it works - and you feel in the zone - and god it feels good. i liken it to the diving reflex. the diving reflex is a protective mechanism in some drowning cases where the body shunts blood away from organs more tolerant of low oxygen toward the heart and brain, increasing the chance of survival if a rescue can occur. i was drowning today. drowning in checkboxes. but something kicked in - maybe my diving reflex. whatever it was, it allowed me to slow down and avoid my usual flailfest, it allowed me to keep my brain and my heart engaged. it allowed me to connect with people.

it's a good thing, too, because if i get to the end of a day of running and sweating and trying to make things work and all i have to show for it are a full bladder and some checked boxes, i'm gonna feel gypped. i need conversation, human touch, laughter, and a side order of warm fuzzies to make me want to come back and do it again tomorrow.

relics

2007-02-07T13:24:00.000-05:00

'should i bronze them or burn them?'
i hesitated to answer, because she was holding her breasts at the moment she asked the question. turns out she was holding her breasts (long story) but referring to the shoes she was wearing. relieved that we were talking about bronzing shoes and not nipples, we were able to have an amazing conversation.

someone had given her these shoes when she was diagnosed and she has worn them here every day since september. they have literally carried her through this harrowing experience, and they will carry her back home. her question is a fascinating one - does this tangible memorial to her disease and treatment spark a sense of triumph or despair? that question has always interested me - the role of relics in grieving and recovery.

why do we love them? why do we need them? what do they give us? why do we sometimes have to pack them away? how do we know when it's time to do so?
is it that the act of remembering gives meaning or order to an utterly chaotic series of events?
is it superstition?
is it gratitude?
is it fear of forgetting?
is it just that i love asking myself questions and writing them in lists?

historically, the word relic has referred to things like a swatch of St. Whoever's boxer shorts that is gilded and the centerpiece of a shrine in a cathedral. obviously, i am using the word in its more general and secular sense.

in fact, i think that one of the most powerful relics can be people. the people with whom we share an event or a period or a season. a specific person, at a specific time that helps us see or feel or understand things that need to be seen or felt, or understood. a person, who the thought or sight of transports us back to the time when that little slice of life unfolded. in this way, nurses are often relics for patients and families. for better or worse, we are reminders.

it happens. you're perusing the cheese selection at the local market or something comparably mundane and run into the spouse of a patient that died. in some cases it might make her day, in others it may ruin it. in one case, i remembered her well, but the reality is, she is one of many for me. but for her, i am one. one nurse who cared for her one husband during his one death. most often the reaction is gratitude and warmth. but once i ran into a woman and i could see immediately in her eyes that the sight of me sent her on a trip down memory lane that she had no desire to take. she was sweet and hugged me but emailed me a couple of days later to say, 'i'm sorry i couldn't talk to you that day. you make me think of his death, and i wasn't ready at that moment.' of course she wasn't ready....it had only been 6 months...it was tuesday at 3pm...in the cheese section. personally, i try to never mix grief and cheese.

then there was my 18 year old girl many years ago. she was a patient with us for several months, and ultimately died under our care. i was very close with her parents, especially her mother maria. maria used to contact me every year on the anniversary of her daughter's death. i looked forward to the conversation...the remembering...the mini memorial we would hold. then one year she didn't call. i knew that she had packed me up in a box, and put me on the highest shelf. we have never spoken since then, but they have never been far from my thoughts.
after her daughter's death, maria returned to the hospital to leave me a pin that had been hers.
i've never worn the pin, but it is propped up in a prominent spot that i visit each morning. i see it when i'm getting dressed and it actually serves as a relic for me. a memory of a family that i was randomly assigned to, but that turned my life inside out. over the years it has come to represent all my families, whose personal tragedies i have been privy to - experiences that helped define me as a nurse, and certainly as a person.

hands

2007-01-21T09:37:00.000-05:00

years ago, a delightful old woman told me in the midst of her suffering...'it's too bad i'm not a golden retriever...this would all be over by now.'

i thought of her when i attended a multi-disciplinary meeting in our cancer center where the issues of palliation, death, and end of life care were discussed. i thought about her point that, in our culture, we often do a better job with animals' suffering than with our fellow humans'.

the stated objective of the meeting was for providers to be able to discuss their feelings on these subjects. it ended up being not so much about feelings. it was physician-led and involved lots of graphs. but oh well. baby steps.
many doctors did speak up saying, 'i could never knowingly participate in a patient's death... it goes against the oath i took...it feels wrong having a hand in someone's death.' well i hate to burst anyone's moral bubble, but of course you are participating...you're just using my hands. when you write that order 'morphine drip...titrate to comfort' - when you give me that collegial pat on the back and say 'just make sure she's comfortable', i do. and i'm not complaining...i love being the hands...that's why i'm a nurse. but i couldn't help wondering, do they really think they're not involved in patients' death or is that just guilt or fear talking? i don't know, but neither scenario is ideal, for our patients. i think it's painful for some physicians to see themselves as anything other than healers. and unfortunately some don't appreciate that, for a suffering patient, death is the ultimate healing.

there's a fine line between palliation and hastening death, that is clear. but the piece that no one could seem to say out loud is that alleviating suffering in our patients often ends in death - and that is ok - in fact it's more than ok - if we're doing it, it's because that is what the patient wants. we do a relatively good job where i work, but of course we could do better. and clearly the first step to improving is talking...openly and honestly about what we are doing and why we are doing it.

at the point of diagnosis, the business of oncology is to save lives and for those that we can't, to make their lives as long and meaningful as we comfortably can. when the end has come, though, we need to be in the business of alleviating suffering. there is nothing more gratifying in this world than to know that you have helped someone experience a peaceful, painless death. as providers, we should be as proud of this as we are of the cures.

next door

2007-01-19T15:29:00.000-05:00

7am and night shift lets us know the patient in room 8 is getting sicker by the hour.
he's probably going to code on our shift.
we all tell his nurse to call us when she needs us.
until then, we'll go about our day with our own patients.

first stop for me - rosie. i love this woman. she is bossy and honest and pissed off that she's here. i find her awake early, as usual, out of bed and reading the paper.
'gimme a clue, i'm bored' she said. she knows i sometimes carry the day's crossword puzzle in my pocket.
'5 letter word for caustic - i think it starts with A'
'hmmmm, i'll have to think about that...hey what happened to the guy next door last night - the nurses were in there all night - i couldn't sleep at all.'
'he has gotten really sick, really quick. you know i can't tell you much more than that.'
'i know. it's just really hard to listen to that all night and then just wonder if i'm next'
just as i start to assure her that she's not next, i get overhead paged to another room.
'hey! acrid!', she calls out as i'm pulling the door shut.
check the wadded up piece of paper in my pocket. yep. five letters. starts with A. nice one.

by 10am, there is a constant stream of people in and out of room 8...respiratory therapists, pulmonary doctors...the oncology team. his nurse and i are getting him re-situated after sitting him up for an x-ray. we hear some very strange sounds coming from rosie's room.
by the time i get there, she has rearranged all the furniture in the room. the bed is now against the wall with the window. i can't emphasize how much this really doesn't work in a hospital.
'what!?', she asks as if it isn't obvious
'i've just never had someone move their bed, that's all. you know it can't stay there...right?'
'well i just can't listen to that racket next door. i feel like i'm eavesdropping on someone's personal disaster'
'i know, it's loud...and scary. we will figure something out, but i need to put your bed back'
'i'll do it...you go work'
'rosie, you have no platelets...i'll do it.'
'oh right. yeah. you do it'.

one of my kindhearted colleagues donates her portable CD player, and delivers it to rosie.
she pulls a Garth Brooks CD out of nowhere...puts on her headphones and zones out...smiling. at some point in the day, i give her the puzzle to work by herself. she quizzes me and barks out clues whenever i come in to hang antibiotics. she hits the nurse button a couple of times to let me know how well she is doing on the puzzle without my help. she knows she makes me laugh.

it's 9 hours later and the man next door is on a ventilator now. his sobbing family members line the hallway. all of the nurses are dragging. it's been a long, draining day. we know this patient and family well. we have celebrated with them in happier times. now all of us are having a little trouble making eye contact. we, at least, get to go home. they will live here until he improves or dies.

'have you been crying?...why is everyone crying?...did he die?', asks rosie starting on her dinner tray, which she refers to as 'one star room service'.
'no, i haven't and no, he didn't, but he may...how's the soup?'
'acrid', she said, lips smiling around her spoon.
my inner nerd is greatly pleased by this little bit of literary symmetry in my day.
i don't know what it is about this woman, but i know she has buoyed me somehow today and i feel grateful. why does it feel like she has taken care of me?

i know she is dreading the night...afraid of hearing other people's suffering.
i know she's going to plead with the night nurse to change rooms - but we have none empty.
a friend brought her earplugs. i hope it helps.
as i go to leave, i want to say thank you...but that sounds weird.
so i just say good night instead.
see you in the morning.

holidays, sushi, and alchemy

2007-01-01T23:12:00.000-05:00

it's normal life rhythms interrupted by parties and dinners and out-of-town family and1/2 days and unusual amounts of presents and chocolate. it's balancing my kids' unadulterated joy at home with a sadness at work so sharp it makes me cringe. it's blurry, strangely cozy...hollow and full at the same time.

it's a whole family piled on their mom's bed watching Gerald Ford coverage and eating chocolates

it's that same mom telling me she knows it's her last christmas

it's her daughters sobbing in the hallway saying they're not ready

it's her husband asking me tough questions

it's giving honesty that sounds vulgur with carols playing in the background

it's that look...i know that look...the jaw tightening, the tears collecting...he loves and hates me for being the messenger

it's time to go home...to shift gears...to family...to fortune...to happy.
read a clever, funny book on the train home...and hope it's enough

home brings warmth...in people and food

it's a full table, amazing food, and wine glasses that seem to fill themselves

it's conversation, stories, and heads thrown back in laughter

it's a pack of feral cousins, reunited for the holidays, that you want to simultaneously hug and sedate

it's hot, fragrant vietnamese soup guaranteed by the chef to have restorative powers...we'll see

resume reading clever book in the morning on the train
listen to music
write a little
brace myself a little

it's finding out first thing that she died overnight

it's the kick in the gut, the tears, the head in hands

it's the aching for her family, despite the relief for her

it's another train ride home. no book. no music. lots of staring.

it's coming home to another perfect gathering of conversation, food, and kids

happy...crying...celebrating...mourning - all with a distinct lack of transition time between.
it feels like emotional sushi...raw, vividly colored, artfully displayed little packages of emotion - interesting and exciting to take in, but with the potential to make me sick overnight.

i came across these words this week from Pearl Buck (who only wishes she could've coined the term 'emotional sushi'), and i was sure she was speaking to me...

"there is an alchemy in sorrow. it can be transmuted into wisdom, which, if it does not bring joy, can yet bring happiness."

peace and happiness to you in 2007

still here

2006-11-27T15:58:00.000-05:00

it's easy to do. to assume that cancer is the worst thing in their lives. the thing that worries them the most. the thing that keeps them up at night. the thing that makes them cry.

she's the quintessential little old lady...80 years old, an ever-shrinking 4' 8'' thanks to a shortened, twisted spine protruding from her back, slightly deaf, sweet as honey...just altogether too cute for words. always accompanied by her husband of the same age - equally cute but from a slightly sturdier stock - no health problems, no medications, plays on a baseball team for seniors (that's right, baseball...80 years old...love it). always accompanied means every visit for her 43 cycles of treatment - 43! she had one foot in the grave when we met her 3 years ago and our last-ditch effort turned out to be her wonder drug. she jokes with us about the routine...how we could all do the monthly procedures in our sleep...how nothing ever changes...

nothing except that her daughters brought her in last week instead of her husband
nothing except that her husband had a heart attack and died at their breakfast table 5 days before
nothing except that we all cried for the first time in 3 years

we cried as she recounted the story of him dying silently during breakfast...how she called 911...how she watched them try to save a life that was no more...how it all felt like a dream.

in The Year of Magical Thinking joan didion, whose husband died in the same manner, tells how
"Life changes fast .
Life changes in an instant.
You sit down to dinner and life as you know it ends."

life as she knows it has ended. 53 years of life together.
i gave her the bottle of pills and she gave me her hand.
she put her head on my shoulder, for the first time in 3 years.
all of a sudden, when cancer is no longer the focus, can you really see the relationship that has been built over the years. we have shared life and now we will share death. i know she needs me more than ever. and not for the wonder drug.

she lifted her head off my shoulder and in a quivering voice gave a most eloquent expression of grief...
'i was always sure my heart would stop beating when his did. but it didn't. i'm still here.'

filter

2006-11-13T15:15:00.000-05:00

i've said it on this site before - some days being a nurse is playing a role. it's knowing that i have a lot of delicate information about the people i am caring for and if i empty the contents of my head, without filtering, i am bound to alienate, offend, and/or scare the crap out of patients. the delivery of information is a huge responsiblity and it makes my skin crawl when i hear other nurses forgetting that.

example: i entered the clinic and asked of another nurse, 'excuse me, have you heard from mrs. n yet today?' she answered, 'oh, it's not lookin' good. she is one sick puppy. soon as she gets here, i'm gonna culture her out the wazoo'. this said in a waiting room full of oncology patients peering out over their masks like a band of immunocompromised bank robbers.

come on...
could you not find any better way of stating that?
could you not have said wait a minute and then pulled me aside?
do you have a filter?
do you know how to engage it?

it's an unspoken code of ethics. well, not for long, as it appears i'm about to speak about it. we are, as caretakers, allowed off-color, inappropriate comments regarding patients and their dilemmas to each other. we are allowed to say things to each other that we would never say to the patients directly. strangely, it's part of staying human in the face of watching your fellow humans dehumanized by disease. that's a lot of humans...but you know what i mean.

it's laughing when what your soul wants is to cry.
it's spewing a little venom to someone who won't think you're a bad person for doing so.
it's expressing anger and frustration as humor or sarcasm.
it's knowing there but for the grace of god go i and needing to work for another 6 hours without losing it.
it's a tie that binds caregivers facing incessant human suffering.
it's good old fashioned denial.
it's a coping technique.

example: i asked an attending what we would give my patient if this current round of chemo fails, and he calmly answered, 'flowers'. i admit that the succinctness and blatant honesty shocked me and gave me competing urges to laugh and cry. and we half-laughed and half-cried and then went about our day.

but the system breaks down when people forget the filter...when they forget how heavily our words are weighed by those under our care...when they forget that we have been ordained as keepers of intimate, scary details of people's lives and it's with the understanding that we will choose our words carefully and compassionately.

to my colleague:
you are a great nurse, committed, hard working, caring, knowledgeable. i know that your exuberance is born out of passion. but still...you need to clean up your act a little. you owe it to all patients within earshot to engage your filter. it's part of your job.
p.s. let me know what grows out of that 'wazoo culture'

blog

2006-11-10T16:11:00.000-05:00

i have gotten some very interesting emails lately. i never had an email address posted on this site but added it recently and lo and behold, voices came from the great void. these are thoughtful, articulate people with various reactions to things i have written. as touching as their sentiments is the fact that they took the time to convey them. one of the emails asked me what this whole blog thing means to me and it just got me thinkin'...

i have read other people's posts and comments about what a blog should be and it makes me think of my own, of course. i'm not immediatley stirred when i read of all the shoulds. i'm not like my youngest son who was born a card carrying member of the 'Spostas'...that's sposta go there...they're not sposta be doing that...what are we sposta be doing? i have to stop myself from saying 'who cares!!'. he does.

i don't know what it's sposta be, but my blog is a tool. sort of like a leech. anyone who has read any of it knows i can can get a little poisoned by excessive sadness and grief. i apply the blog, let it suck out the toxins, hit publish and walk away a little lighter. it's slighly numbing, but healthier than other numbing agents i have known.

i've worried, at times, that a patient would read and recognize themselves in a post. unlikely, i know, but stranger things have happened. i've never gone back and changed or deleted anything, hoping that if it was found, they would read it as humanitarian and not voyeuristic.

then there's this whole thing about comments. the little 'somebody loves me!' glimmer when you see you've gotten comments. luckily, the converse is not true. i don't think that nobody loves me when there aren't comments. that could get painful.

comments let you know someone is reading. that can be a mixed blessing. there's the pleasure taken in knowing that i am heard and then there is the possibility of that knowledge changing what or how i write. it pains me to be so observant sometimes of people's body language and various affectations in face to face conversations. i think i'm incredibly sensitive to people (and myself) speaking from their souls versus saying what they think they should or saying what they think wants to be heard. the same goes for writing. i know, for myself, when i'm writing what i think wants to be read as opposed to writing what my soul needs to unleash. everyone's entitled to write both, i just think they read differently.

presently, i'm reminded of my high school writing teacher who said 'always have a point!'.
oh well, too late.

rumsfeld

2006-11-08T13:44:00.000-05:00

hallefallujah!

go blue

2006-11-07T21:41:00.000-05:00

i have decided there is one line that i don't mind waiting in. and i know i just ended that sentence with a preposition. and because of that, i know somewhere out there my mother is restless and uncomfortable and doesn't know why.

anyway, that line would be the line to vote. i was part of the enormous after-work crowd that inundated my local polling center. standing in line, i was struck by this long, diverse, patient, quiet crowd snaking around the school cafeteria. it was 7pm and everyone there would have rather been home. it was nice and i was basking in the goodness of it. i think i felt a little patriotic, a little proud, a little camaraderie, and part of something important.

the basking was brought to an abrupt halt when the man in front of me felt compelled to download all of the major events of his life. in 20 minutes, i learned of his stillborn child thirty years before, his adventures at woodstock, and the challenges of raising 2 sons. and even that didn't ruin my mood.

i just hope at this time tomorrow, i'm basking in the warm glow of some much needed political change.
cheers!

time

2006-11-06T14:14:00.000-05:00

another time, another place we would have been friends. what am i saying...we are friends. we never meet without exchanging books. you called me from a cafe in paris just because you felt cool doing so. i called you when my dog died, because i knew you'd cry with me...we are friends.
you are also my patient - details, details.

know why i like you?
you are wise and humble and funny - my three favorite qualities in people.
you are also brave and eloquent and did i mention funny? you are really funny.
you get as ridiculously excited about good books as i do...giving dramatic full-body renditions of plot lines. and as you are practically climbing out of your seat with excitement telling me i have to read something, i know i'm stopping at the bookstore on the way home. your enthusiasm is infectious.
plus, you ran off to paris against medical advice and that's just cool .

i'm a little scared. i would never tell you all this in person - not now, at least. when we first met, we talked about death a lot. at the moment we're talking hope and progress and action. and we should be. but in the quiet recesses of my mind, i feel time running out for you and i ache for what lies ahead.

i don't want to watch you die. i don't. but i'll be there... in the front row, no less. and i hate that. (roll standard grief reel).....
you've lived a good life - blah
you've gotten more time than most with this disease - blah, blah
to every season... - blah, blah, blah
sure it's all true, but is it comforting? not at all.
will it be comforting after you die? probably.

okay that's depressing. let's get back to talking hope and action. yes, i agree. with myself. when we've tried every drug known to doctorkind, it's time to get creative. i'm thinking...
lourdes
open letter to leukemia in the new york times
class action suit against god

i tell you this: whatever you choose or whatever is chosen for you, i'll be there.
xo, my friend

DNR

2006-10-13T08:16:00.000-04:00

there was a very well written article in the new york times this week on the subject of the DNR (do not resuscitate) order. it is a pretty thorough primer on the subject. curiously, this article appeared in the science section which is a fascinating social commentary. i see that they have since moved it to the perfectly good health section right next to it. perhaps a perfect starting point for a discussion on how and where the understanding of death, and life for that matter, fits into our cultural fabric.

not surprisingly, among layfolk, there is a great deal of suspicion, if not outright fear, surrounding the whole topic of obtaining this order and its ramifications. i think a lot of people can imagine wanting to be a DNR in the setting of a terminal illness, but then fear, once they've made that decision, choking on a raisin and healthcare workers just standing around staring at them, whispering to each other well, she said no heroic measures - which is, of course, not how it works. conversely, i think patients worry about not making this decision early enough and ultimately burdening their family members with making a decision. i can't state the issues better or more clearly than the author. i hope a lot of people read it and begin discussions with their families and doctors.

in oncology though, as i have stated in this blog before, one would expect some level of proficiency in dealing with this subject. it's a very complex, highly emotional topic and in a hospital setting this and other decisions are often made in crisis situations or other less than ideal circumstances. but for a center that deals with a great number of terminally ill, i have witnessed far too much strife on the part of patients and families and staff as last minute decisions are being made, that needn't have been last minute. it reflects a breakdown somewhere in the system - a failure to make the possibility and/or liklihood of death a part of the oncology conversation. failure to have open lines of communication on the subject. failure of the providers to say 'it's time to have the talk we hoped we'd never need to have'.

this is not a complaint i am filing as much as it is an observation i am relaying. and if i perceive this as a deficiency in my center, it's not a reflection of the individuals here. rather, i think it speaks to the enormity and complexity of this problem. that basically, if we can't get it right here on a consistnet basis, if we can't be a model for how it should be done, then it's no wonder it's difficult everywhere else.

i attended a conference at my medical center on this topic. this involved physicians, nurses, and social workers - all in oncology - looking at the questions surrounding end of life care. i remember the opening remarks by the oncologist leading the discussion - 'we need as a group to discuss this important issue of when to broach the subject of death with our patients'. am i really the only one thinking broach it baby ! it's probably on their mind from the moment they walk in the door? what are you waiting for?

more than one physician at this conference said 'it's too uncomfortable to bring up when you first meet someone'. really? you're a doctor - you insert your fingers in the rectums of people you just met ten minutes earlier. and why do you? - because it's necessary, it's part of a thorough exam, and your patients are counting on you to do what's in their best interest, comfort aside. you didn't wait to forge a meaningful relationship before you did that. medicine is fraught with discomforts - but overall we accept them because it helps keep us well. this, while not exactly a finger in an orifice, is no exception.

i reject this notion that it is insensitive to bring it up early. most of my patients have told me that the greatest horror of getting diagnosed is the feeling of getting a death sentence handed to them - that whatever the diagnosis, they are going to die. they are already thinking about it and i think it's important to open that door early - let them know it's normal to think about it- let them know it's not taboo to talk about it even if they have a good prognosis - let them know that they're going to be contemplating their own death at some point in this process and that this is a safe place in which to discuss that. it would be inappropriate to perseverate on the subject but to not mention it feels equally obtuse. i don't think it deprives them of hope. i don't think it's insensitive. in fact, i think it's compassionate.

i have found that starting a conversation with a simple, 'geez, it must be so scary getting a diagnosis like that' is often enough to start a discussion on the subject - a discussion that can grow over time as you build a relationship. so much of early oncology care is about cheerleading and action and getting treatment started and providing hope. i am all for all of that. talking about fear of dying does not need to be independent of that. when handled gently, as you would any intimate topic, it can be liberating, even empowering to patients to have their doctors and nurses acknowledge these very normal fears early on. and then what you have is a working dialogue - something to build on if the patient's prognosis worsens and death becomes imminent. then there is trust already established and it's so much easier on everyone to talk about the specifics of death when the general subject hasn't been ignored up that point.

of course it's not always going to go well. some will be rubbed the wrong way by your efforts. some will be unable to discuss their feelings with you at the beginning, or ever. that's ok too. i do feel it's incumbent upon us, the providers however, to try.

cancer makes us all think about death.
tallking openly about that fact is not easy or fun.
then again, lots of important things aren't.

i wanna be the snack lady

2006-10-09T10:43:00.000-04:00

i've got my eye on her job. she pushes her donation-funded, well-stocked cart all day handing out treats. i want to hand out treats. i want to give oreos instead of worsening lab results; jelly beans instead of bad news.

i mean, really. how did i end up here? i'm really not emotionally competent for this. one day last week, i just couldn't stop crying. the two leaky faucets, formerly known as my eyes, had red rims. i had to make up stories all day about having allergies. maybe i am allergic...to estrogen...or sadness...or cancer. if i could desensitize myself to my cancer allergy, would i? should i? if i developed immunity, would i find peace or would i need to find a new job? can i only do this well if i'm steeping in the emotion of it all? oh how do i annoy me... let me count the ways.

problem is, if you say these things out loud, people say 'oh you must be such a good nurse', 'they're so lucky to have you'. let me let you in on a few secrets. some days suck. some days i'm not such a good nurse. some days no one is lucky to have me.

do i expect i will be perfect - no
do i know there will be bad days - yes
should i work on creating boundaries and not getting so involved emotionally - oh please
do i actually think there's anything wrong with crying when you're surrounded by death - no
do i wonder why i'm the only one crying - yes
did i feel like an idiot when my patient started consoling me and i had to leave and collect myself - yes, but i returned with oreos, thus making me a thoughtful idiot and bringing to life my snacklady fantasy
do i feel guilt over people's misfortune - maybe
do i know life is not fair - yes
does that fact continue to surprise me even thought i know it - yes
do i appear normal on the outside - i think so
how is this possible - i have a blog

reminder

2006-09-29T21:36:00.000-04:00

38 years old
1 husband
5 children
8 days ago, life was normal.
1 headache,
20 bruises,
1 scan, and
2 biopsies later, she gets
1 nasty diagnosis.
10 percent chance this treatment will kill her
100 percent chance this disease will kill her without it
0 great choices
1 profoundly bad day in the life of this family
1 more reminder to hold tight the ones i love tonight
peace

if only

2006-09-26T11:07:00.000-04:00

if only i had known it was the last time, i would have said more
i would have given more
i would have said thank you
and forgive me
and i forgive you
and i love you
...and goodbye

tagged

2006-09-24T10:26:00.000-04:00

i've been tagged. in blogese, this means that someone wants me to tell something about myself. i've been tagged before to tell random facts about myself, list my favorite books, etc and i pretty much avoided it out of some mix of no time, no desire, mild case of lonerism, and some undercurrent of does not play well with others. i know i can really lay it all out there in some of my posts but somehow a request to share feels like a burden or an intrusion - will share when she feels like it - not a charming quality now that i see it in print. anywho, enough about me. oh wait, this is all about me. i'm supposed to list the 7 songs i'm listening to currently. this is easy, not because i know what they are, but because the ipod doesn't lie.

Tuesday's Dead - Cat Stevens
i mean just try listening to it without dancing in your underwear and making those little flamenco snaps up above your head. it can't be done.

Baila Me - Gipsy Kings
my imaginary, hot, latin dance partner and i tear it up on this one.

Waiting for the Great Leap Forwards - Billy Bragg
any singable, danceable, rockin' ballad with Che Guevara in it intrigues me.
plus, 'the revolution is just a t-shirt away' is one of my favorite lines ever.

Ring of Fire - Johnny Cash
who knew? maybe the ipod does lie.
my eldest cousin insists this is a condition he gets after eating mexican food. i insist that this is a great song. in part, because i get to play air trumpet.

Glosoli - Sigur Ros
my icelandic is a little rusty so it's not the lyrics alone that move me. but it's something, and i love it.

The Only Living Boy in New York - Simon and Garfunkel
what my blog doesn't reflect is the part of my life that can be summed up with 'i've got nothin' to do today but smile'. it's there, i'm just not driven to write about it.

Bea's Song - Cowboy Junkies
honest about relationships in a way that is calming, thought provoking, and slightly depressing.
oh crap, i think i just described myself.

Mozart: Requiem - not exactly a song
this is the background music of the last year. i have commuted, meditated, worked, thought, eaten, and slept with it. a multi-purpose masterpiece.

the last step is to tag 7 other bloggers.
can't do it - feels too much like a chain letter.
does not play well with others

stream of consciousness on humility

2006-09-20T12:03:00.000-04:00

it is sincere
calm
and quiet
it is several steps removed from everyday emotional drivel
it is not flashy
not high maintenance
not needy
not trendy
not hip,
but yet, it is cool

i think of my patient mr. w - calm and grounded, yielding on one level to the reality of his disease, but fighting valiantly at the same time. coming through the revolving door of our center, sometimes daily, fighting...trying...hoping to get his life back. he exudes placidity and warmth. he can bring down the anxiety in a room just by entering it. whatever he has, everyone wants a little of it.

i think of my brother - an elite athlete training for an event who quietly runs 20 miles on his lunch break. he asks no one to accommodate him or his schedule. he asks no one to listen to him tell tales of his feats. he doesn't need recognition or approval. he just runs. brilliantly. quietly.

i think of the doctor who is leaving our hospital. and when people find out he's leaving, they invariably say, oh man, he was one of the good ones. and there are a lot of good ones here, but very few who go about it quietly...with no flash, no over-sized ego, no need to be seen and heard and remembered. if he could be cloned, oncology here could lose its edge...take a step back... have a little grace...slow down...give more.

humility - interchangeable in my mind with wisdom. wise, of course, not be confused with smart. this institution where i work has smart people oozing out of every corner, but an utter void, it seems, of wise ones. if just occasionally, people could dismount their high horse, get over themselves and listen....what a different environment it would be to work in. and of course this could be extrapolated to politics, war, families, relationships, and just the most basic of human communication.

where does humility come from....can it be learned, encouraged, practiced?
one can be humbled by disaster, or illness, or beauty, or faith, or greatness in some form - things and forces and people that make you feel small or vulnerable or that make you feel you are a piece, rather than a whole.
or, you could be born a sherpa

my friends are sick of hearing about the sherpas, but i can't stop talking about them. i watched a special on them and they just embody humility. their smiles, their work ethic, their comaraderie, their respect of the mountain, their pervasive calm. there's an intensity of purpose and a calm reverence for life as they stir their yak butter into their barley gruel, preparing to haul a bunch of northface clad- powerbar munching-adventure seeking westerners up the mountain.

i think if this whole nursing thing doesn't work out, i may just go sherpa.

meet the patients

2006-09-14T15:51:00.000-04:00

the good
she was a delight. an inspiration. she sat in her room googling her little heart out in regards to her disease. she challenged the treatments being offered. she asked good questions. and she knew how to ask them - how to make her doctor feel like he was still smart and in charge even though he was starting his answer with 'uhhhhh....'.

she had read about a japanese legend that folding 1000 paper cranes would entitle you to one wish granted. and at that moment, she had only one wish. health. so she sat in her room, attached to her pumps that chugged and clicked endlessly - a constant reminder of the chemical war being waged in her body. she had her vibrant origami squares of paper and she folded...and folded. she would hang them from the ceiling, windows, and bulletin board. she would give them to her doctors and nurses and visitors.

if i ever get cancer... which i ponder at least once each shift, i hope i would have a fraction of the grace and faith and calm and courage that she did.

the bad
'good morning mr. d, i'm going to be your nurse today'
'well at least i finally get a white nurse'
oh good. nothing i like better at 730am than a hot cup of coffee and a bigot. please, may i spend the next 12 hours of my life with you?

about 3 minutes into the shift i realize that any attempts at therapeutic communication or redirecting the conversation or pointing out inappropriateness will be in vain. the day is a series of foul comments, sexual innuendo,and racial slurs. he is, in medical terms, a gigantic-nasty-5 toothed-backwoods-ass. herein lies one of the great nursing dilemmas - i hate you and yet i'm responsible for your well-being. hmmmm.

i wonder how he came to the understanding that he was superior..to anyone. i wonder if he knows that cancer is not his biggest problem. i wonder if his mother regrets marrying her cousin.

when he rages on about 'the blacks'...
i think - i really don't like you
i say - can i get you some ice water?

when he asks me to sit on his lap...
i think - you're foul
i say - would you like some ice water?

when his family calls and says 'he's a real spitfire, idn't e?' ...
i think - if that's appalachian slang for 'raging jackass', then yes, he certainly is a spitfire.
i say - i'm sorry i need to go. i need to get him some ice water.

the ugly
mistakes happen. the woman who was supposed to get 1 can of chocolate ensure delivered to her bedside by the snack lady, got 6 cans of jevity. for the supplement naive, jevity is a liquid feeding meant to be given via feeding tube, not mouth, and is known for its high fiber content. it has the color and smell of baby poo and tastes like something far worse.

when i came to check on her, she proudly announced that she had drunk all of the supplements brought to her. concerned, as it was only to have been 1, i peered in the trash can to find 6 empty jevity cans. anyone and i mean anyone else would have taken one whiff and been on that call bell so fast, refusing to actually drink any. 6! good christ, woman! and the thing was, she was beaming...for being the good patient, for not complaining, for being so quick about it.

i did inform her, gently, that they had not been intended for her. but something measurable on the richter scale was about to befall her colon, and i felt no need to belabor the 'blind obedience' point. she shortly entered what can be best described as the 'shock and awe' phase of her body dealing with this fiber bolus.
whoa nellie - ask ye a few questions next time.

this shift ends, like they all eventually do. i sign out my well-hydrated bigot to the next lucky contestant who much to my delight is the slightly militant, 6'3'', 250lb, dredlocked, black, male nurse. oh to be a fly on the wall at that meeting. i peek my head in on my jevity fiasco. she's in the bathroom with the door shut. shocking. i pass my crane-folder on my way out who nods a gentle good-night from behing her mask.

good-night bizarre little trio. you've made for a memorable day.

back to school

2006-09-05T23:05:00.000-04:00

the boys start school tomorrow. lying beside them as they fell asleep, a slidehsow from the summer flipped in my mind, frame by frame...

these are good ages, 4 and 6. they're fun and cute with each other. for the conflicts that do occur, we've taken FIFA's lead and focus on the instigator, even though the offense has yet to be a racial slur against their mother. one of the most important features of their advancing age is that they can now watch saturday morning cartoons alone, while we sleep 'til 8. this is huge.

there was the amusement park. part of me dreads such places...the crowds, the lines, the $4 bottles of water, the impenetrable stench o'fried food. but the sheer joy of the boys is completely contagious - exiting each ride, running with wide open arms and even wider grins, 'did you see me mommy?!' but in the end it's all summed up by the 8 dollars in quarters it takes for the oldest to win the fugly green monkey you wouldn't pay 3 cents for in a store...but because it was won catapulting rubber frogs, it's a bonafide treasure.

and there was the much anticipated day of hiking and fishing, somewhat thwarted by the 8 feet of rain we got that week. they waded into the water they had been hoping to fish in, waded back out wearing what appeared to be algae kneesocks. add in the mud freckles on their faces and the big toothy grins and it was some kind of precious redneck norman rockwell. the fish knew better than to be hanging out in that water. the hiking was great.

we read some excellent books this summer. and thankfully, i took my friend's advice and now always sign the books i give them, with the date and a message for either one or both of them. now it's the first thing they read when they open it. to them, it's part of the story. i love that.

we managed to bore their asses off with some lazy sunday afternoons watching Antiques Roadshow. they were totally unimpressed with the walrus tusk skrimshaw valued at $40,000. but hey, that's their problem. all we can do is expose them, right?

we took a trip to france to visit family. we didn't receive our passports until they night before we were to leave...things were a little on the tense side as the US passport office informed us the the 4 year old's was 'under review' (!?!). i always knew there was something sketchy about him. the air travel was relatively easy and we didn't get blown up by a single gatorade bottle. so that's nice. we got to spend a day in a castle, have night swims in the pool, eat well and live well with our family. they were good travelers...even open to trying some smelly cheese in a practice of theirs that i like to call 'whine tasting'. we broke down and got'em some freedom fries on the last night. they had earned it.

there's been...
lots of popsicles on the front porch
lots of swimming
lots of lightning bugs
lots of filthy feet

now the mornings are just a little darker and cooler, apples are in the fruit bowl instead of berries, and two backpacks are propped up by the door full of new crayons, fat pencils, and this little calculator keychain thing that is almost guaranteed to be broken by this time tomorrow.

it's part horror, part gratitude, part wonder, part pride...to watch the time passing
to watch them growing into themselves, as brothers and as individuals
to see what completely cool and admirable people they are
to know they need me just a little less than they did before.

for tomorrow and all the days after that - bon courage, boys!
i love you

blood

2006-08-22T16:15:00.000-04:00

her face is just barely recognizable, despite the fact that i've been caring for her for 3 weeks. the 36 year-old, dark eyed, latin-tempered, 'I am in control and I say I am not ready to die' , beautiful, italian woman is failing. her olive skin now pale yellow, the whites of her eyes stained red, the pallor in her hands sends a little chill across the room. her lithe arms riddled with bruises - one for each attempt to give her back what her body keeps refusing to hold on to - blood.

the chair in the corner holds her husband... slumped over, head in hands, trying to pass for conscious but in the midst of a 36 hour bender of sleepless angst.

around her room are pictures of her with her family. in them she is strong, beautiful... well.

'am i just going to keep bleeding until i die?'
what a question
'it's possible. unless we can find a way to stop it which we haven't been able to yet'
what an answer

we had the DNR (do not resuscitate) talk a few weeks ago...when it was all hypothetical...and she knew then that she didn't want to be saved. she wanted to die when her body was ready. she said she 'didn't want to stand in the way of the train'.

now the moment is here. now she says, 'i don't care what you have to do to me...don't let me die'. wow - from DNR to IDCWYHTDTM...DLMD. this is her choice, and i prepare for the impending siege...hearing a train in the distance.

her bleeding problem is made more visible by the brand new intern who takes it upon herself to remove an arterial line that isn't' working. bad idea in a patient that has no ability to make a clot. 'they said it wasn't working, so i took it out'
'you're right. it isn't working. it was, however, sitting in an artery that is working well' ...
as evidenced by the jackson pollock being pumped out onto her white sheets and my green scrubs.

it's a 12-hour frantic race all day. i can't give her what she needs fast enough. we give her blood products i've never heard of before. one after another. sometimes two at a time. we squeeze them in with inflated bags to try to stay ahead of what is leaking out. throughout it all, her heart keeps slowing... threatening to stop...then recovering. her blood pressure is barely high enough to keep her brain perfused. i lose emotional momentum when it becomes clear that we are doing things TO her instead of FOR her. i go to hang the 8th bag of red cells...i feel like just pouring them on her sheets to save a step....this isn't working. it look like a massacre has taken place in here. maybe one has.

the doctors round.
who we needed: the lanky asian doctor with the Yanni-hair. he knows how to say stop. he knows how to empower a family to make that decision - to make them feel they are doing their loved one a favor, not a disservice.
who we got: the other one. the one who thinks that death is optional. the one who said 'this is what she wanted'
bullshit. no one wants this.

so we keep going. and going. who are we treating? ourselves? her husband? her dying wish? those squiggles on the monitor that signify life? this life is over. let it end...let me clean her up and return her to her husband. please.

thankfully it does end. it is sad but it would have been sadder to continue.
i whisper 'sorry' to her as i wash her. this time it's sympathy, not an apology.

before i enter my house i head to the trash can and toss in my shoes. i'll never get it all off.
walk in barefoot, strip off scrubs and throw them all in the trash.
'bad day?' he asks, knowing this is an understatement
try to squeeze out a 'thank god for you' smile before heading to the shower.

her death....was it inevitable? did something we did or didn't do in the last weeks hasten it? in the end did we prolong it? did there have to be so much blood? could it have been better? these questions will keep me awake next week.
nothing could keep me awake tonight.

mjk

2006-08-17T22:22:00.000-04:00

you were about the age i am now when you were dying
i was half your age
i remember the whispers and muffled sobs
the closed doors
the devastation
it felt like crying wasn't enough
it felt like i should be bleeding

it would have only taken a train ride
but i never took it
i was afraid
afraid of purple spots, hollow cheeks
afraid of seeing your body defeated
afraid i would be afraid of you

you were the one
the center of it all
ferociously funny
you told me i had great gams
you danced with me
you gave me a thesaurus
best gift ever

i would lie in my bed thinking of you in yours
wishing i were stronger
strong enough to go see you
crawl in bed with you
hold you, kiss you
stroke your hair and tell you, 'shhhh...i'm here...i love you...it's ok to let go'

because of your death, i am a nurse
i was going to be the savior to the gay men
the one who wasn't afraid to love and touch them
show everyone their fears were unfounded
i was going to make it up to you

somewhere along the way oncology took over instead
i found patients' hands in mine in the middle of the night
and i heard myself whispering, 'shhhh...i'm here...' as they let go
and i thought of you

your death was a detonation
life as i knew it was shredded
everything i've done since has had a piece of you in it
a piece of the rubble, i guess

your laugh is burned into my brain
your julia childs impression can spontaneously crack me up
i can't use a thesaurus without thinking of you
my youngest son has your name

it's not pure sadness anymore
it's something else
something more
you touched me so deeply
how you lived and how you died
jolts of color in the tapestry of my life

i thank you
and love you

just trying to help a brother out

2006-08-07T13:55:00.000-04:00

dear boss,
we are just finishing our first year together. we've gotten a lot of work done, laughed quite a bit, fought just a little, and come to know each other pretty well. as you always say...'as a pair, we can only be as happy as you are' - here are just a few suggestions that would make me happier: (and make you look better at the same time)

when the patients ask what albumin is don't say 'it's nothing more than egg whites' and then move on. they have no idea what you are talking about.

you have a problem keeping shaving cream out of your left ear. can you either fix that or can i switch seats in clinic, please.

stop asking your patients what dose of chemotherapy they are on at home. you prescribed it. it's chemotherapy. you're supposed to know. at least pretend to know until you have a chance to look it up.

easy on the metaphors. sometimes straight up explanations work just as well. sometimes they work better. telling the 84 year old 2nd grade educated guy in the wheelchair that his treatment is a marathon and not a sprint just didn't work. didn't you notice how he just stared at you?

try to listen to bodylanguage. when you say something and the patient and all four family members look immediately at me, that is the sign for 'we don't understand but we don't want to seem stupid in front of the doctor'. slow down. start over.

please stop telling jokes to patients. you overestimate how well they go over. that's polite/nervous laughter you're seeing.

it's time for your bi-annual haircut.

you used the word 'portend' 3 times in that last meeting. i know it was probably off your word 'o the day calendar, but try to be more subtle about working it into your own repertoire.

'whatever you think is best' is the wrong answer to the patient who asks if they should take one or two diuretics each day.

and finally...

please stop sniffling, moaning, and pseudo-coughing. it's a cold. you aren't dying, i promise. i know you caught it on the plane - but unless you had the great misfortune of sitting next to an indonesian chicken with fever and chills, you'll be fine.
trust me.

reality bites

2006-08-05T21:02:00.000-04:00

i first heard his name one week ago - a leukemia patient that wanted to go on my phase one clinical trial. that sets off a cascade of brief but numerous communications with others at the hospital concerning his insurance coverage, schedule, eligibility, and disease status. this guy's name and information were scribbled in twelve different places on my desk. i finally made him a folder with everything i knew about him inside.

thursday evening i got the word of his insurance approval. this set off another flurry of emails with everyone relieved that he would be able to get the treatment he wanted. he might just make it to this family wedding he was trying to hold on for. the last email of the night i sent to his doctor letting her know the plan...friday moring, when he was due in, i would finally get to meet him. i would give him the consent form, go over it with him and answer his questions. we would plan to start treatment first thing next week.

the first email i got friday morning was the reply from his doctor which read...'sadly, Mr. K fell at home last night, bled into his head and died. he will be greatly missed.' what the...oh my god...geez! seems like something more profound was in order, but that was all i could muster.
is this where i just move on, yell out Next! and sign up the following person on the waiting list? i mean i didn't know him, right? not exactly my style. must process this one, must ruminate, must wonder with head in hands, for the millionth time, if i'm too emotionally flimsy.

what is it exactly that i'm feeling?
sad? - not really. i didn't have any relationship with him.
shock? - yes and no. i knew his life expectancy was extremely short.
weird? - very. weird that at the hour i was exchanging celebratory emails with his doctor, he was already dead - we just didn't know it yet. weird at the reality of how fast 'the reality' can change. weird that the folder with his name on it seems to be glaring at me from the corner of my desk. weird that i can't bring myself to slide it over a couple of inches into the 'to shred' pile.

got lunch?

2006-07-30T15:12:00.000-04:00

there was an article friday in the new york times about drug reps providing regular meals to doctors and their staff and how this often translates into increased drug sales. it's a good read. accurate too. and scary. http://www.nytimes.com/2006/07/28/business/28lunch.html?ref=health

they turn up everywhere at my hospital, and never empy handed. it is known that the best way to ensure a group of professionals in a hospital attend a certain talk or conference is to be sure it's catered and there's a rep around every corner willing to do so. food speaks, especially to doctors and nurses who feel overworked and under-appreciated. it keeps people happy.

it's a love/hate relationship. most of us know it's wrong, but they're just so damn nice...sometimes even cute. and if you befriend one, watch out. it's like that stray kitten you feed outside your door once and then every time you open the door you practically trip over the thing. there's one in particular i like to call the human thong - sexy, pretty, but in the end uncomfortable and burrowing into places she just doesn't belong. then there's that one who's in love with my boss, always proposing to take us out for a 'work dinner' wink wink. no thanks.

i wish patients could get an uncensored look at the huge annual meetings held to distribute the year's research, and the prominent role drug companies play. it is disturbing. reps are commended, often rewarded for spending a lot of money on physicians - drinks, dinners, elaborate private parties, transportation to and from events. the companies are basically saying to their reps...'here, i'll give you a bunch of money if you go spend a bunch of money on these people that make a bunch of money.' there's just something wrong with that whole picture. the whole pharmaceutical industry is just one big sugar daddy. or maybe a high end escort service.

even more disturbing, is the basement of this conference center which has a couple of acres devoted to them, each one with their own booth. it's like a demented disneyworld of games, contests, massage, cappuccino, and of course the endless supply of label-emblazoned crap...and otherwise normal people walking around with bags full of it...red and white m&ms to mimic red and white cell, platelet paperweights, totebags, pens, coffee mugs, and let me tell you the viagra nutcrackers were going like hotcakes. one doctor told me he brings an empty suitcase with him to these events to fill with such items. he said his kids wouldn't let him back in the house if he didn't...they've gotten used to all the toys. and i guess it's the kid in everyone who likes to be given free pens that light up. it seems so benign, but we all know it isn't.

of course all this crap influences important decisions and practices. and like all other advertising, your only hope of being immune is if you know you're being courted. but the lunches and the pens have become so commonplace, no one bats an eye. the majority of people don't even consider those things advertising anymore, let alone unscrupulous in any way. with that considered normal, drug reps have been able to move on to bigger and more elaborate courtships. they often cater to physicians at my big academic center who are certainly paid far less than their counterparts in the community. rarely, if ever, do any of them resist or take a stand or speak out about the sleeziness of it all - they feel entitled, they feel they deserve it.

never a dull moment

2006-07-28T22:08:00.000-04:00

i think i need a wailing wall. brookstone probably makes a portable one. or maybe i just need the Nerf version of life... the one that doesn't knock the breath out of you...the one that doesn't hurt quite as much.

there's always at least one call a week that rocks my world. this one started as a dreaded phone tag between my patient and me. her last message was left with a cell phone - she was clearly crying, clearly frantic and i couldn't make a out a single word she said. fucking cell phones. so i tagged her back and waited for her call...all the while planning the bonfire i'm going to have, fueled by all of our implements of pseudo-communication...remembering the simple days when the word cell was linked to either wall or membrane...the days when it was still considered strange to hear a techno version of when the saints go marching in coming out of someone's pants.

she finally called and was beyond distraught. her husband has just been diagnosed with unresectable pancreatic cancer. we talked and cried and talked. so many things floored me about this...i had just seen him and he was truly the picture of health - how can a body that sick not show or feel anything?...how they, as a couple, have devoted their care and energy over the last year to her disease... how they thought that it was the worst thing that could happen to them...how overnight she had become the lucky one.

i've shared a lot of emotions with this woman. she's a simultaneous crier/laugher. i love that. we've talked about our marriages...how we both married our high school sweethearts and lucked out...we laughed at how we chose who we were going to marry when we were 17 - an age well below the legal limit for choosing a life partner. i got close to her husband who always told me they were going to beat this...who never left the room without winking at me and saying 'take good care of my girl'.

how quickly the tide turned. how quickly the patient will become the caregiver. how quickly his girl needs to take good care of him. i ache for them....for this purely rotten year they have had and will have to continue to endure. if asked a week ago, i would have said that our relationship was centered around her cancer and its management. now i see it is based around so much more...life, truth, an emotional bond that can only be forged in intimate circumstances like these. to some degree, i will live this with her...such an unexpected twist that neither of us could have fathomed when we met.

this is always where i get stuck. where i can't turn off the emotional noise in my heart and head. where i'm prone to shutting down, spiraling into the abyss - i'm well known there, often greeted with a knowing 'would you like your usual dark table in the corner?' no, i really wouldn't. that whole abyss thing is getting old. going to try plan B.

Plan B: live well, love well, laugh as much as possible, dole out as much compassion as i have, surround myself with people who can give me a little when needed...what else is there?

thank you to my oncology friend who helped me 'just say no' to the abyss today...who personifies compassion...who opens my eyes...who makes me laugh at myself and everyone else...who quotes Forrest Gump or the Dhammapada, whichever is needed...who is just always there - the most faithful of friends. i couldn't do oncology without you.

housecall

2006-07-10T20:11:00.000-04:00

he had been asking us for months to come see his gardens... his 'pride and joy'. he's 84 and has cancer and as he so aptly put it, 'you better hurry up before i'm not around anymore to give you the tour'. so i went, and took my boys. i had never gone to a patient's house before.

from our visits at the hospital, i knew he was a thoughtful husband , an adoring father, a kind man - he sent my son a set of books when he had surgery. what i had no way of knowing, until we were in his world and not ours, was that he was an amazing artist, sculptor, woodworker, and gardener extraordinaire. his house was one giant treasure-trove...a museum of his artistic feats of the last 60 years. he proudly gave us the tour...'i painted this after my second daughter was born...i carved this for our 50th anniversary...this was from my metal phase.' all i could think of was how several times a week for the last year i had spoken to him, rarely getting past his bowel habits....and the guy had a metal phase! i never would have pegged him as an artist, yet in his own home, i couldn't see him as anything else.

and all of that was just a preview...just a necessary path we had to take to reach the true wonder - the gardens. what he called his gardens is really several acres of beautifully rustic woods that he has singlehandedly cultivated into an absolute wonderland. enormous, almost regal, oak trees that hand-in-hand the boys couldn't encircle completely, seemed to look down on and watch over the streams he has dammed, the swings he has built between trees, the thousands of ferns he has planted by hand. there were birdhouses (homemade of course) strewn throughout high branches and enthusiastic birds letting us know this was the place to be. there were numerous, beautiful bridges helping us to the other side of winding creeks. lush does not begin to describe the thick, green, textured blanket he has planted and tends to. and having just been rained on , heavenly does not begin to describe the smell permeating the air...that earthy, rainforest, wet leaves smell.

'now you see why i didn't have time to be sick?' he asked me, arms out, presenting his masterpiece. 'now come on, we haven't even gotten to the best part.' and he was right. the best part was about 1/4 mile up the trail...i heard it before i saw it...rushing water, barrelling over boulders the size of our car. we had to yell to be heard over the water. 'wow', said my oldest. yes, exactly. 'this is my shangri-la', said our guide. 'i come out here to read and think'. this guy was killing me. i was in awe.

he told us we made his day by coming over, and i believed him. it was so important to him that i see who he is and how he lives. i thought on the ride home what a fine job he has done at not letting cancer define him or his life. i'm not sure i had done as fine a job. when he's in our world, in some strange way, it's like he belongs to us. twice a week he is our dear patient who we are trying to make well. when now i see that we are only attending to one shred of his existence...doing a little maintenace on the vessel so that he may return to his raison d'etre.

thank you my friend. your gardens took my breath away. your talent and work ethic are inspiring. beyond that, though, you gave me the gift of insight. thoughts of today will forever remind me that the patient is only one slice of the person.

resiliency

2006-07-02T02:12:00.000-04:00

it's my theory du jour...that resiliency of body, mind, and spirit can have a huge impact on the health of a body, the health of a relationship, and the overall well being of anyone trying to negotiate life in an unpredictable, slightly crazy world. that means us.

webster's say this:
n 1: an occurrence of rebounding or springing back 2: the physical property of a material that can return to its original shape or position after deformation that does not exceed its elastic limit

i say this:
with it, conflict and frustrations become glancing blows, as opposed to oppressive forces. a body can right itself after physical injury. a mind can rest, instead of perseverate.
without it, we're stagnant...our bodies ache with the slightest injuries or overuse, our minds racing with unending calculations - taking ever longer to return to our original shape, longer to spring back, longer to return to baseline so that we may move forward.

i think about my patients. i think of the countless people hijacked out of their lives by disease, often with healthy bodies, but for a mob of errant cells. i think of their physical strength and resiliency and how the loss of it oftens signals the beginning of the end. the body gets tired, the marrow takes longer to repopulate, it takes less of a blow to knock it down.

and while there's nothing quite as inspiring or endearing as emotional resiliency in the face of adversity, i feel for my patients on this front. as a culture, we have grown to embrace the cancer hero...the one who's not afraid, the one who speaks out, the one that makes us feel good. i just think if i was a patient, i would be 2 parts inspired by these heroes and 1 part deflated. not everyone can be lance armstrong. not every woman can revel in her new found baldness. not everyone is inspired to fight the fight. some people are just pissed, many are depressed, scared, angry. i'm sure they outnumber the heroes...they just don't end up on the cover of inspirational magazines. the truly scared patients, the profoudly sad and bitter ones just don't give us that warm fuzzy feeling. they make us congnizant of our own mortality - and that's no fun.
i have nothing but admiration for these heroes who do what i never could. i just think it's the american way to order up a hero, preferably famous, preferably attractive to distract us from the dirty parts of life...like especially that pesky part about death.

ok, i'm ranting. where was i....resiliency - it's what i thought of when i talked to my patients this week. what can i give you, get for you, tell you, do for you that might make you more resilient - maybe it's an extra week off from treatment, maybe it' s a long conversation about how you may have just had your last birthday, maybe it's just being your touchstone, maybe it's not asking, 'so are you feeling better', hoping for a hero's answer but just saying, 'tell me how you're feeling'.

now, how to increase my own resiliency...that's the question. maybe i just need to listen to my four year old who, after hearing me complain about misplacing my bathing suit for the third time this morning said, 'mom, i think it's time to move on'. right on, little buddha. thanks.

a.

2006-06-24T10:53:00.000-04:00

i remember you. you were part girl, part woman...both a teddy bear and The New Yorker in your bed with you each night. i was only four years older than you, i guess the same could be said about me.

i remember your long curly hair, first on your head, then on your pillowcase, then in the trash. your mother sobbed. you shrugged...saying, 'it'll grow back'.

i remember living your transplant day to day like it was my own. i remember thinking this is why i became a nurse. i remember loving you and remembering i had been warned against such things, but knowing it was too late to change that now.

i remember when they called me at home, hours before i was due in to work...when they asked me if i was sitting down - (i thought people only said that on tv)....when they told me you were dying...when i said, 'what the hell happened?'...when i said i couldn't do it - i couldn't take care of you...when they told me i could, and i needed to, and i had to... that you were asking for me.

i remember walking in your room...the noise... the oxygen flow was so high and so loud, we almost had to yell....the inside of your mask was spattered with blood...your parents weeping...your little brothers' eyes turned down, hands in pockets, leaning into the wall, trying to blend into it, trying to disapper.

i remember swabbing your lips, getting in close and your eyes opening and locking on mine. and i knew then that 'looking death in the eye' was not just an expression.

prior to this i thought death was passive...a slipping away. now i saw that it could be active, and without being a fight, could be a challenge - like leukemic blasts were picking off your organs one by one, hour by hour. and i saw them for the first time as an army - an evil, oppressive one, steamrolling through your body, their carnage right in front of my eyes.

'what do i do?' i asked my colleagues. they said to keep you comfortable, give your family space, and wait. so i did.

i remember my name being called - and rushing in like i didn't know what had happened...and actually being surprised. i remember your mother wailing, 'what am i going to do?' i remember the little brother fetal on the floor and hearing the older one throwing up in the bathroom. i remember turning off the oxygen and the peacefulness was a relief, and a shock. the silence punctuated your death, making it final.

i asked them to step out...like i knew what i was doing...like i knew what came next. but i didn't, and when it was just you and me i was paralyzed. i wanted to hug you like i had every day before this one. i wanted this to not be happening. i was saved by an experienced nurse - one that entered with a powerful grace, kissed you on the forehead and got to work. 'you can do that?', i thought...so i kissed the other side of your forehead and somehow started moving and breathing again. she told me what to do and i did it. i washed your face, your chest, your arms, and hands...i remember waiting for the water to turn warm...and then realizing that probably didn't matter...and then waiting anyway. i took you out of your gown and put you in one of your shirts, one they would recognize. the other nurse put a little make-up on your cheeks - and i know i looked at her like she was crazy - but it looked good...and i remember your mom sobbing saying, 'thank you for making her look pretty.'

i remember seeing your dad leave, walking down the hall, one arm around your little brother, the other arm clutching your teddy bear. when everyone was gone, i remember falling to my knees, i remember the guttural sob that that exploded out of some part of me that had been thus far untapped. i remember thinking, 'this is the reason i became a nurse?'

i remember the gift your mother came back and left for me...your favorite pin...the gold elephant with sapphire eyes. i carried it in my pocket for months. it's sitting beside me now as i write.
i still pull it out from time to time, rub my thumb over it, and remember.

men with colds...

2006-06-20T10:59:00.001-04:00

...a subset of the species to be avoided at all costs. previously (yesterday) virile, vital, productive members of society now with congestion, sore throat, low-grade fever, and an inexplicable, uncontrollable urge to give a play-by-play of every new sensation that might ripple through the body...bracing for their own premature death, that, if you listen to them, now appears inevitable.

it looks something like this:
...the 48-hour furrowed brow
...the gentle stroking of the throat, eyes squinting with each (wildly apparent) painful swallow
...the cough/moan combo
...the barely audible mini-sigh tacked on the end of each exhalation
...the flannel pants, the wool socks, the shuffling around cloaked in a fleece blanket

it starts out well... the nurturing, i mean. there's orange juice poured, hot tea brewed, lemons squeezed, shoulders rubbed, sofas stocked with pillows and blankets...quick draw a little sympathy out of the holster i carry it in.

then something breaks down right about the time i start hearing...
..'i'm just so cold'...wait let me look back in my nursing files... oh, here it is...put on a sweater!
...'i don't know what to do'...you could take the tylenol i gave you an hour ago.
...'i hope you don't catch this'...dude! i had it last week, i just didn't talk about it!

maybe it's that i prefer to get paid to care for sick people.
maybe it's that i actually know what sick people look like.
maybe i'm just mean...naaah.

e.

2006-06-11T18:11:00.000-04:00

wednesday, 7am: night shift nurse says she's doing great. not much to report. find her writing in her journal, freshly showered, smiling. 'i'm going to publish these poems one day'. i know you are. i spend the day with her - we make small talk about the cute tennis player she likes and not-so-small talk about her transplant. she knows the routines by now... hanging antibiotics, giving blood, drawing blood, changing dressing, vital signs...she chats through it all. she has a new cough, one she barely notices but one that makes me nervous. we check it out...lungs sound fine...x-ray is normal...nothing to be done.
her parents are haggered but smiling. it's the waiting-for-the-other-shoe-to-drop smile - their daughter's been here 2 weeks. they've just about had it.

thursday, 7am: night shift nurse reports that she was up all night coughing. she ends her report with the dreaded words 'i just don't have a good feeling about her'. i put my head down in my hands...any nurse knows you're better off hearing that your patient is swimming in her own waste than hearing that the night shift nurse 'doesn't have a good feeling'. she's been doing this for 20 years. she sees, smells, senses something bad coming and i've learned enough to be scared.
8am: find her in the pantry leaning over the counter. 'i just came to get some juice and got out of breath...i'm sure it's nothing.' i'm sure it's something. x-ray done...lungs sound bad...oxygen 2 liters.
parents arrive and are shaken. 'is she dying?' her dad asks. no. i don't think so.
10am: doctors round...they're smiling at her, as usual, but they listen extra long to her lungs and squeeze her nail beds while they're smiling at her...write two pages of new orders and head off to see her x-ray....oxygen 4 liters.
2pm: the beeping won't stop...her pulse is too high...her oxygenation is too low. we've spent the day fighting the cloudy white enemy seen on her x-ray. oxygen 6 liters.
mother rocking. father pacing. 'is she dying?' i don't know.
7pm: she has spent 12 hours getting sicker by the hour...she' s tired...too tired to breathe well...the decision is made to intubate.
parents are rocking each other. 'do you think she's going to die?' she might.
9pm: i arrive home to the innocent but dreaded question, 'honey, how was your day?' i'm able to convey 'don't ask' with just my eyes. i let the hot water rush over me...scour my skin with a cloth...hoping to exfoliate my psyche in the process...put on the softest clothes i can find...curl up on couch...take two bites of the empathy pasta that has been prepred for me...close my eyes.

friday: ...'honey you overslept...it's time to go to work.' jump up, throw on scrubs, brush teeth, grab bagel.
7am: night shift nurse says she's been stable...no better, no worse. all that stability evaporates in an instant, as often happens during report, and something changes...her heart is racing, bloodwork shows her chemistry is all wrong...too acidic...the most oxygen we can give her isn't enough...we try all our tricks to prop up her blood pressure but we fail.
her parents arrive running. 'is she dying?' yes.
6pm: and she does, but it takes all day. it takes a lot of orders....a lot of trying one more thing....a lot of swearing when that thing doesn't work...a lot of doctors pulling their hair out...a lot of running...a lot of tears...a lot of whispering 'hang in there' in her ear...a lot of nurses taking turns sitting with her parents...a lot of disbelief. it takes us transforming her into someone unrecognizable...it takes her parents saying no-please stop. and we do. we give her medicine to relax her...take the tube out of her throat...bring her parents back in. with one parent on each hand, she takes her last breaths. i try to make myself invisible but am there, armed with multiple drugs in case she wakes up...freaks out...has pain. but she doesn't. she just breathes and then she just doesn't.
9pm: stumble home. pre-empt the dreaded question with a statement...'emily died'. as the water scalds me tonight i try to decide what therapy is needed...vodka- maybe...ice cream- probably...12 hours of sleep - not gonna happen, i need to be back there in 10.

curl up on the sofa in the soft clothes...momentarily try to piece together the last 48 hours of my life...am distracted by the idea that i may not have a life...am further distracted by the idea to contact Bryers about making vodka ice cream...close eyes.

2006-06-06T01:52:00.000-04:00

new hope in targeted therapy

there was an article today in the new york times about the changing face of cancer treament. i'm not cool enough to know how to link to it but it's easy enough to find, if interested. the article details how, with the advent of targeted therapy as opposed to targetless traditional chemotherapy, many formerly fatal cancers are becoming chronic diseases. at meetings i've been to you hear repeated over and over that in multiple myeloma, for example, fewer and fewer patients NEED to be cured ( to which i always think... well that's really handy since there is no cure). but i get what they are trying to say - that multiple myeloma, like so many other cancers can often be treated daily, as you would high blood pressure or diabetes or other chronic disease and that going forward, more people will die with these diseases than from them.

the article predicts a rapid influx of new therapies into the market based on the nauseating truth that now drug companies are interested...now it will be profitable. they're far more interested in a patient that can live for 20 years taking their magic potion daily than the one who may only get a couple of months of palliation and then die...there's certainly no financial incentive there....and apparently moral incentives are for sissies.

this changing paradigm of treatment is at once an inspiring testimony to the clinical research of the last decades and a disturbing reflection of who controls what treatments become available, and when. in any case, more is always better when it comes to patients having choices of drugs. the longer the list of potential treatments, the higher the liklihood of finding one or a combination to which a particular patient's cancer is sensitive. of course, the next step is actually making them remotely affordable so they are not only on the market but accessible as well, which is more than i want to talk about here.

in the end, i believe it to be a victory for the patients so maybe the drug company's sketchy motives can be overlooked just this once.

call it...

2006-06-04T02:04:00.000-04:00

...that's what someone says when the code needs to end. these are probably the events of my career that haunt me the most. not the death itself but the 'heroics' leading up to an almost certain death. hospital deaths can involve too much flexing of medicine's muscles for my taste.

the code team arrives, having been paged to this emergency. a typical group is:

nurse - slightly bossy, very experienced, arrives running .
surgeon - sashaying in like he's been paged to a wedding as opposed to a life that needs saving
anesthesiologist - the calm, efficient, skilled person who carries everything needed to save a human life in a backpack.
respiratory therapist - who sighs heavily, rolls eyes back in head regularly to display her disgust for everyone else's relative inefficiency compared to her own. very experienced...task oriented...all business.
on call doctor - AKA team leader whose arrival illicits one of 3 responses from the nurses on the unit:
1. oh jesus (usually mumbled)
2.who's that? (usually whispered)
3. oh thank god! (usually yelled)
dr. oh jesus is known to lack many of the crucial qualities needed to direct a code...confidence, experience, knowledge, humility, decisiveness, ability to listen.
dr. who's that? has no reputation preceding her but you can bet she's going to leave this code with one.
dr. oh thank god is known to possess many if not all of those qualities. there's an air of certainty that the best possible outcome for this patient will be achieved with this doctor at the helm.

all parties are present and slightly out of breath. the patient is pulseless...completely out of breath...by all definitions, dead. and this team of people is here to change that....so begins the flurry of medications, chest compressions, intubation, machinery beeping, orders being yelled out, lines being inserted known as a code.

'come on sir...come on sir...come on sir' says the person rhythmically doing compressions
'his name's richard'
'come on richard...come on richard...come on richard'
two amps of this...one amp of that
charging...clear
charging...clear
charging...clear
resuming compressions
one amp of this...two amps of that
repeat...repeat...repeat...
'does anyone have any other suggestions? have we missed anything?', dr oh thank god calls out.
silence
time of death 11:35

in my warped, overly-sensitive fantasy world now there would be some giant group hug...not so much. people just disperse, it's the weirdest thing. code team members return to whatever they were doing when they were paged, the doctor is in the unenviable postion of talking to the family, and the nurses clean up.

i pull the curtain in the room and place a sign on the door 'please see nurse before entering'...tell richard i'll be right back... grab a bottle of peroxide and head to the bathroom. unfortuantely, the conference room where richard's family was waiting abuts the bathroom. and with one foot on the trashcan, scrubbing richard's blood off my shoes, i hear the low drone of the doctor's voice followed by the cries, the gasps, the wailing of his wife. this is one of those moments, like a boxer in a corner before the last round, i need the trainer rubbing my shoulders...splashing a little water in my face...telling me to shake it off...stay in the game...get back in there. roll up sleeves...return to room...my colleagues have already started - god i love them sometimes.

it's with those same colleagues that i head out after work. it's one of those nights you just need to be with other witnesses...the band of brothers or sisters...the ones that lived what you lived. and we won't talk about it...we don't need to...we all saw the same things...heard the same things...felt similar things. we just need to share a beer and a greasy sandwich and few laughs. i need my colleagues tonight...not because we're friends...but because they know.

2006-06-03T00:03:00.000-04:00

who are these people anyway?!

...my kids i mean. birds and bees and miracle of life aside...where did they come from?...why me?...why them?...why me with them? it floors me daily that they were assigned to me - these brilliant specimens of humankind. god, they are so funny and wise and loving and i just really like them. the questions alone that a 4 and 6 year old brain can produce on any given day are enough to floor me...such as this recent sampling:

what's more important than life?
what does calcium look like?
do llamas ever stampede?
does spiderman have nipples?
i live for these ungoogleable inquiries. actually i hate to think what a spiderman/nipple search might turn up. i don't wanna know.

or the 4 year old telling us how the butterfly feeds through his probothcuth (that's proboscis with a lisp for those of you that don't speak 4-year old) - i mean it just doesn't get any cuter.

and powerful little beings they are...able to illicit powerful reactions....
head-shaking, incomprehensible wonder between 2 parents when you look at them and then at each other and simultaneously think, 'really? they're ours?'
rage so dumbfounding i practically choke on the unspoken obscenities barreling towards my
lips .
love so gripping i'm afraid when i go in for a kiss, i might take a bite out of them one of these days.

i can't help but wonder...not worry, just wonder....how they'll remember me as a mom...what they'll think i gave them....what they'll think i took from them...what they'll wish i had done differently...what they'll thank me for...if they'll know that above all other things, i loved them.

i'll remember the sacred middle of the night mommy calls - sacred now because it's rare. where, after kissing away the bad dream and offering him a place in our bed, the older, after sufficient squirming, inevitably forms what i like to call the parental H. this is two parallel parents in bed, who were comfortably intertwined just moments before, now with one very content boy wedged perpendicularly between them. 'remember' the other arm of the H whispers over the little guy, 'these are the good old days'. yeah, you got that right. i know my body temperature will drop a comfy 10 degrees if i scoot over 2 inches, but i know the days of that sweaty blond pelt being pressed up against me are limited and you couldn't pay me to move.

2006-05-31T23:33:00.000-04:00

kung fu

i started it to combine my aforementioned need for sweat, catharsis, and mindful practice. and also, as my wise friend says, to find ways to make it easier to be me. love that...i'm a lot of work, i know that - i need strategies /activities that tame certain parts of my personality so that i don't completely get on my own nerves.

the first class was....well it was four skinheads and me. 20-something year old, white (i think, under all the tatooes), dressed in all black, i'm here to learn how to hurt someone kinda guys. just to give the visual...i'm a little on the thin side...alright, i AM the thin side...adipose challenged...skinny...whatever. i'm not complaining, nor do i consider it an asset - it's just a fact. thin...not to be confused with fit. but all of us in the room had an unspoken fear that one of them could inadvertantly maim me, so i got paired with the teacher.

sounds stupid, but when i started it didn't occur to me that it was about fighting. i was thinking more body postures, repetitive exercise, mind control. and, in fact, the instructor gave us its history and its origin was based in a need for secluded monks in mountainous regions to stay conditioned since all they did was eat, sleep and pray. there was the potential for invasion and thus potential need for self defense, but the primary goal was fitness. i couldn't help wondering if the monks were swearing in the shower after their first class like i was when i could barely raise my arms to wash my hair. oh right... no hair...probably not. bastards.

but the skills learned are definitely about fighting...punch, kick, block, aiming for key body parts. mixed in are the tan tui (surely spelled incorrectly but my best effort at something pronounced tantooey) that are slow, steady exercises maximizing body control and coordination. i've never had a surplus of coordination so these are difficult and feel especially good when a certain rhythm finally clicks. apparently these exercises are taught starting in grade school, daily, to children across china....and i love that we scratch our heads as to why chinese children seem to exhibit superior focus and discipline when the exercise of choice in our schools is dodgeball...but i digress...

the first class wrecked my body - i actually limped for a couple of days - but ignited my spirit. maybe it's the yelling with each kick, maybe it's the kicks themselves, maybe it's so far outside my comfort zone that it's just automatically endearing, maybe it's the skinheads in flip-flops...who knows...or cares...it totally kicked my ass physically and engaged me spiritually - good combo for me.

reading down the pre-printed lists of ten skills to learn at level one, i saw number nine was 'forward ball kick' - sounds like a good skill to have. details to come.

2006-05-30T11:41:00.000-04:00

memorial day

memorial day had me thinking about war and fighting and losing.
in oncology, we have adopted the language of war:
the fight
the battle
the casualties, the victims, the dead
the survivors, the fortunate, the heroes
immune system/army metaphors abound
winning
losing
ravaged
she fought the good fight
nurses are said to be 'in the trenches'
harsh treatment is often called 'the big guns'
her disease has exploded
time to surrender
he went down swinging
looking for a new strategy
silent enemy
the families left behind
hoping for peace

i guess that makes my patients soldiers...and me...
conscientious objector
war is hell

2006-05-25T21:40:00.000-04:00

dreams

my patient, N, emailed me this week and she closed with...'i keep hoping i'm going to wake up from this crappy dream'

i used to have this recurring evil dream where i was the RA on the floor of a dorm and there was some crisis behind every door...i'd hear people crying, screaming, calling my name, pleading and i couldn't find my freakin keys. everyone was stuck suffering behind the doors - it was awful. i haven't had it in probably eight years, and i realize now that it's because i'm kind of living it.
there's just a lot of suffering right now - patients sobbing, friends aching...all of this pouring in over emails, face to face meeting, voicemails...and it's humbling and overwhelming and frustrating that i have nothing to offer them - nothing except compassion which just doesn't always cut it in a crisis...nothing except my words which don't seem to make a dent these days. i find my own impotence highly annoying and slightly appalling.

if i could wake you all up from your bad dreams, i would
if i could alter the course your life is taking, i would
if i could liposuction that cancer out of your marrow, i would
if i could lighten your darkness or dampen your pain, i would

what they need is a miracle...or just enough good luck to offset their bad luck...or just a really good day.

to my patient, N. you and i both know tomorrow is d-day...your creatnine is going to show us if what we are doing is working or if your disease is laughing at our treatment. when i see it come up i'm going to click on the horrid little box on my computer screen that holds your future, with one eye shut, chanting 'please, please, please' like i'm praying to the kidney gods. i'm with you. i'll be with you either way.
to everyone else...i wish i held your keys.

2006-05-18T10:48:00.000-04:00

good girl...

not her given name, but the name bestowed on our dog by our oldest when he was learning to speak. she died last night. it wasn't quite how we had imagined. we thought we'd have more say - that we'd choose to put her down when things got too bad. but things got too bad unexpectedly, in the middle of the night. she was in pain and the medicine we had wasn't working. her cries weren't dog noises, they were things i had only heard at zoos. our cries escalated with hers. we moved her to our bed and spooned her from both sides. she was screaming 'make it stop' and then it did.

it's a surreal, middle of the night blur....clenching my husband's heaving shoulders, thinking rocking him might dissipate his pain...plucking my toasty boys from their roasty beds - the older one comforting his dad, the younger fetally curled in my lap sobbing, sliding his little hand out for an occaional pet. 'i'm gonna be sad for a long time' he said. yeah. me too, love.

sun streaming in on the morning dew of our woods, super-dad dug her grave, while the boys and i watched. 'she's still soft' the younger said petting her. yeah. she is.
after the first three shovel-fuls had been moved to the side, the older said thoughtfully, 'if she were a chihuahua, we'd be almost done.' tears streaming and laughter erupting - the kind that only manifests in your shoulders - dad kept digging.

thank you, good girl...who got us ready to be parents...the first love of our boys' lives...the only member of the family always in a good mood...connoisseur of tennis balls...model of devotion and warmth and cute. i like to think you went out living the country life with gusto...so may we all.

we'll miss you. it won't feel like home for awhile.
bye-bye, sweetie.

2006-05-17T12:04:00.000-04:00

pack your bags....we're goin' on a guilt trip

my colleague had a patient die this morning.
her angst and sadness are palpable. god knows i know that pain. and, because she told me, i know she is in the inevitable...i should have___________ phase (fill in blank with endless array of selfless, compassionate acts). this is part of the process as a caretaker.

i want to relieve her, though, of the impending burden of the next phase...the 'i've done nothing meaningful with my life....i live superficially....i've learned nothing....i'm an ungrateful ass' stage. taking shreds of these feelings away from a death can be beneficial - reminders of our own finiteness spurring us on to seek meaning and fulfillment. but oncology comes with a curse (the flip side of the blessing of being able to know people at this intimate time) - the curse of guilt - the gift that keeps on giving. the internal dialogue goes something like this....'i am supposed to have learned all these precious life lessons from my patients....was suppposed to be more aware of what matters...excel at living in the moment...posessing all of the little gems my patients have bequeathed to me - i continue to have normal human urges, cravings, fears and preoccupations...therefore i am worthless.'

it feels like i havn't gotten everything i 'should' have - guilty of being too normal, having intimately experienced all of these abnormal things...a general frustration with my doctrineless, dogma-free existence. just last week, after reading an article, i declared to myself (luckily i tend not to say this junk out loud) that i would only EVER eat organic pigs, coddled cows, free-range chickens, suicidal veal....whatever...while the next day dining on some grade F cheeseburger from a concession stand feeling like i need to go to confession afterwards - not for any great injustice to the animal kingdom but more that i imagine digestive enzymes rushing to the site in biohazard gear to get that crap out of my body.

what do i know consistently? not much....i mean, i know i hate cancer, rumsfeld, and velveeta - but beyond that i'm totally malleable. it just seems after all these years i should have some sort of ghandi-esque tenents for living - some impenetrable calm and understanding of how i want to live. but that is just guilt speaking...i don't look at my colleagues and think that they should live differently or better.

so, to my friend...i'm with you...i feel you...i bring you a warm-morning-feel-good beverage like you have for me countless times. i'm not sure cofee is gonna cut it today....how about we get to work on that personal dogma thing over a couple of prozac mimosas?

2006-05-13T23:42:00.000-04:00

family

my husband's grandmother died today....quietly, easily, surrounded by family, several states away. maybe it was the juxtaposition of this announcement with the article i was engrossed in at the moment on artificial insemination in pigs - but it just didn't seem real, not possible, though completely expected.

this was the day we had chosen to plant our garden. given the day's sad news, i found this plan metaphorically satisfying, if nothing else. light years away from lattes and crowds and crazy soccer parents, insulated from the world by our woods, we dug into our soil. raking the upturned soil smooth, carving troughs, sprinkling seeds, covering them and marking them. row by row... the spinach and carrots and greens and watermelons...racing against the dark clouds rolling in. super-dad kneeling beside his boys, patiently letting them do each task independently, not caring that 25 carrot seeds were 'sprinkled' in an area the size of a dime. this dad is the deluxe model.

i told them that i had read that human pee and hair around the perimeter of the garden are supposed to keep the deer away. hands on hips, imaginary super-hero capes blowing in the breeze, clearly having just received the best assignment of their lives, the boys set out with pants down and an unprecedented determination to fortify the family garden. and, given the size of the human/pet hair tumbleweed i had to tackle in mid flight the other day in our bathroom, we should fare well against the deer.

their interest waned eventually...energy now put towards pulling wild onions by the handfuls and for no reason other than that they can, rubbing them in their armpits and calling out...look!...deoderant! our dying dog wandered over to be part of the festivities. she lured me over to sit with that ‘i’m dying, ya know’ look she’s been giving us lately...and this ended up looking like a perfect snapshot of this family...mom scribbling in the journal, scratching the dog...the boys rolling in laughter, discovering new uses for dirt...and super-dad silently, methodically finishing the planting.
the air was good…the mood even better - both a little sweet.

i thought about my friend, the best man at his friend’s wedding today, and what he'll say in his toast to honor and inspire this couple. i thought of what i would say today- about marriage and love and family and home. i would celebrate with the new couple...for the passion yet undiscovered - the collaborations and adventures and discoveries that super-glue two friends together…the kids that make you realize that you hadn't even known what passion really was. i'd tell them about the parts no one ever talks about...probably not as part of the toast. how there are raw moments…how you get lost sometimes - wandering like a crackhead, because it seems home isn't quite where you left it. how you both hop on different roads...praying they intersect at some point. and when they do intersect, how the new rhythms you each bring back help you travel a common road and reinvent your couple...again.

farewell grandma f.
thanks for welcoming me into this family.

2006-05-12T10:16:00.000-04:00

sun

oh thank god. it felt like a party in my skin this morning when i walked out into sunshine. my cells were pleased. i hope this little dermal fiesta is enough to sustain me today.
there is just something about a chilly rainy day, such as yesterday, that always feels like a directive from god to disengage from the world and steep in my own psychological cacophony. usually a few uv rays are enough to nudge my chemistry in a better direction.

i just have bad chemistry for this stage of my life...where there's so much going on...so many responsibilities...and i'm so easily overwhelmed. this whole nurse, mom, wife, supportive friend gig i've got going - this incessant nurturing that i need to dole out. all these roles...i'm just not sure i'm playing any of them well.

as always, who better to sum up my role confusion/inadequacies than my six year old son:
conversation at the grocery while peering into the cart...
what are those?
tampons.
can i play with them?
no.
why not?
because they're not toys. and they're for women.
you're not a woman...you're my mom! (said with an amused snort of laughter)
right. my mistake.

nothing quite like kids to take the proverbial wind out of the the old feminine sails.

2006-05-12T01:36:00.000-04:00

bitch

i get this feeling at work where i just want to yell out, 'hey! am i the only one freaking out here... the only one sad a lot of the time and suffering bi-hourly meltdowns?' i guess that's a 'yes' since you're plugged into your ipod browsing online for bikinis. does that make you a bad person...certainly not....annoying, shallow, and vacuous....maybe. we all have our coping strategies. i think mine is to be a bitch. i know you're going to come asking, so i'm just going to tell you now, yes, that one will make your butt look big.

i think i like to blame my not-belonging on the complexity of my work combined with my baseline neuroses and ultra-sensitivity. but more and more, i realize i feel this way in groups, at work or not. basically, whatever the group, i'm not in it. never more apparent than waiting at the gate at the airport recently where a bunch of Southwest "B's" (a group to which i belonged on paper) were frantically vying for position a good 40 minutes before boarding was to begin. i just don't get it. jesus people, we're all getting middle seats....sit down and relax, read a little, have another red bull....that's probably why you can't sit down in the first place. at this point, our degree of comfort will all be determined by the girth and presence and/or severity of body odor of the people on either side of us. it's a crapshoot - don't hurt yourselves. i was the dead-last person to board the plane, i was able to finish the chapter i was reading, and my seat sucked like the 40 people in front of me.

just last weekend i took my boys to a festival in a neighborhood downtown. maybe i just had too many expectations. i felt like we had entered a living j.crew catalog where a rumor had been released that bad beer would be unavailable forever starting tomorrow. i mean the urgency with which these people were consuming...irrigating their tube tops and $100 pre-ripped jeans with miller lite sloshings...just bizarre. luckily the music was good. and we ate food on a stick - and that's always fun.

this outsider/refugee status has its benefits. i was at a meeting this week with several boring doctors and a handful of bitter nurses, daydreaming about where i would rather be, when much to my delight, the most boring of the doctors stated that there was a 'vast difference between right and wrong'. okay, first of all...thanks for the insight. second, all i heard was 'vas deferens'. and that was enough to make me snort a giggle that i tried to cover as a cough and send me scribbling in my notebook. and by some stroke of cosmic luck, he said it twice more in ten minutes. it was a day-maker. it's like reading david sedaris on the train... where strange, unpredictable sounds of amusement escape my lips into the void of solemn stares around me.

in my mind, i blame my work in oncology for my brooding, mood swings, over-the -top emotional states, and social isolations, although there are family members who may testify to these being pre-existing conditions. i feel like the amount of stress and worry and sadness assoicated with my work makes me irritable and impatient with the world. my bullshit meter is very sensitive...set off easily by crowds, waiting in lines, or most 'news items' on the yahoo homepage.

allright...bitch, bitch, bitch...maybe i'm irritable because i stay up all night blogging instead of sleeping.

2006-05-07T03:23:00.000-04:00

question...

most mornings start with email. the news updates, the clever forwards, the not-so-clever forwards, routine questions from patients, requests from my boss. friday i got a message from a patient with several questions....can i reschedule an appointment for her...what did this last lab value mean...can we plan the next cycle around her vacation...can i get her in to see an orthopod for her knee...'oh yeah', she said, 'and i need you to tell me how i'm going to die. i need to know what is going to happen to my body and when, so i can prepare'. and she signed it - thanks

i can't decide if i love or hate my job
i don't feel like answering her
i don't know how to answer her
yes you do. just do it.

i spared her the 'lack- of-crystal ball' lead-in that we professionals are so fond of. i swear if i'm ever a patient i'm going to make myself a t-shirt to wear to my appointments that says...i know you don't have a crystal ball. please stop telling me that. i'm asking you, not because i think you're god, but because you have experience. please just do your best.

i started writing ,thinking...this should be a converstaion, not an email. but she usually calls me and she didn't. so i kept writing. i wrote truthfully, trying not to be too graphic, about what could befall her kidneys, bones and bone marrow. it was depressing to write and to read - and that was just for me. i told her what the literature says, i told her what i know, and what i've seen, and what i think. i told myelf that was what she was really asking for. and i hit send with my eyes shut, praying she wouldn't regret having asked me.

within 10 minutes she wrote back one line...one line that sums up the power and privilege inherent to this job...
thank you for being my nurse

the word 'my' before nurse was the part that really got me. and i had a familiar feeling swell... the one that makes me kind of laugh, kind of sad, kind of proud - no one knows what we really do. and it occurred to me to forward her one line response to all of the countless people who, over the years, have asked me...
'why didn't you just become a doctor?'