ten, being the worst

i haven’t written
because i am under the assumption that our life
with or without cancer
(but especially without)
is not all that interesting
(to you)

certainly not any more interesting than anyone else’s life
with or without cancer.

but when events with cancer do happen,
and yes, even in remission, they happen
all the time,
i will write.

————

i keep telling leanne to write down her patient stories,
though i’m the one who likes to write around here.

the other day she had a holocaust survivor come in.
i think it was shoulder pain
or back pain, or something like that.

and she probably asked him to describe the injury,
to take off his shirt (where she saw the tattoos
left over from the concentration camp),
to move his arm or his back
this way, and then that way,
and then like this.

and then she asked him the question
that she probably asks every patient:

“so, how would you rate your pain
from 1 to 10 with 10 being the worst
pain you can imagine?”

in my head he laughed.
(she said that weeks after, he came in again,
after a car accident, smiling, saying of the woman who hit him:
what do you do? she didn’t mean to).

and as he laughed,
leanne caught herself too.
the absurdity of the question
posed to him.

the quantity and intensity of pain
this man has endured over his lifetime…
and where does the twinge of a shoulder
fit in this equation?

how would she answer it
if and when someone posed it to her?

i’m sure she thought of that too.

and then…

she came home.

beatdown #2: complete.

may beatdown #3 be a hangnail.

and may you never hear about any of this nonsense again.

flor de calabaza

“i think you’re wrong,” lydia said to me
the other morning, after the first night of leanne
being back in the hospital.

“about what?”

“about mommy coming home,” she said.

“no, i’m right,” i said. “she’s coming home.”

it’s been days now and she’s not getting better.
in fact, people are starting to get worried.

and so it’s me and liddy, together at home,
sometimes friends stopping by, but mostly
just me and her.

and let me just say that in some ways you’re never truly a father
until the day you sit in the bathroom with your daughter
collecting stool samples together.

and strangely, amidst all of this, things have been fairly normal.
and that’s what scares me.
how unaffected she seems, and i seem, by all of this.

in a way it’d be easy to say that we’ve adapted,
and i suppose that’s exactly what it is.
but what does that mean?

that she’s used to her mother being sick.

i don’t like it.

—–

i think i remember the place.
a small taco stand where the woman was making
tortillas hecho de mano.

i could be wrong, it could’ve been here,
a salad i made, anything really.

but i think for some reason it was that taco stand.
the little bowls of salsa and mushrooms and, yes,
flor de calabaza, with little spoons.

how the woman filled the tortillas with the chopped
up squash blossom, and how (yes, i’m sure i’m too much a lousy poet
to let this go), how the blossom opened inside of leanne.

—–

it’s been too long now.
too long to have a fever.
too long to not eat.
too long for it just to be e. coli maybe.

and, as i wrote before, she’s not getting any better yet.

—–

i took lydia to see her yesterday.
i made her promise not to try and hug her or kiss her,
that she had to wear a gown and gloves and that we had
to leave quickly.

“do you think you can do that?” i asked.
“yes”

and so we went and i wrapped her up in the ridiculously large
yellow gown and walked her into the hospital room
where leanne was feverish in the bed.

she sat in a chair and watched the tv.
her one transgression: a kiss on the knee
before we left.

and that was it.

—–

—–

last january: cancer
this january: e. coli
do not think it hasn’t crossed my mind that next january
i should start a new blog titled:
follow lingling as she gives genital warts a beatdown.
or an ear infection.

oh, how lovely that would be.

i want people to know how much i hate this.
how much i hate having something to write about.
how indulgent i think it is.
how disgusted i am by it (but how writing is the only thing
i know how to do that will make me feel any better).
how i’m exhausted by the life and death of it all.
how i want to live in the trivial for a while.
just a while.

how i want so desperately for lydia to be wrong,
and for me to be right about her coming home
and staying there.

doubletake

so many things tell me this is a dream.
there’s the orderly with the very, very long hair, pushing
a cart.  the valets joking in the parking lot, kicking the slush,
but most of all it’s the man in the waiting room
running around behind tables and chairs and couches
stacked with faux-italian leather purses.

there are neon green ones with a fake iguana print,
and pink ones with rhinestones
(because, well, that’s how they roll in venice, of course).

and the man who is hawking them in the waiting room
of the hospital has what i’m sure
is a european accent as fake as the things he’s selling.

it’d be easy for me to say:  what are YOU doing here?

but instead i ask:  what are WE doing here?

——

the truth is that leanne has been sick
since the day we got back from mexico.
10 days of fevers that just won’t go away.

she had a petscan last week, just the regular one,
that was perfectly clean, so it’s not a cancer thing…
in that it’s not that she has cancer.
but it may be a cancer thing in that she has something
that just won’t go away…that her immune system simply
is shot.

it’s impossible for me not to think of the woman
i wrote about a few posts ago, who made it through chemo,
only to die from some weird side effect of the chemo.
and it’s impossible for me not to hate having to be back
with leanne in the hospital again, having her being stuck
with needle after needle, having to tell lydia again that mommy
is sick and won’t be home tonight, having to park the car outside
the hospital and walk the same walk through the snow i did
a year ago.

i hate every step, every elevator, every thermometer beep.

——

i couldn’t take leanne into the hospital this morning.
i had a meeting…for work.
the meeting was for kaiser.

of course.

they were interested in health applications of digital storytelling.

of course.

and so before i came home to take leanne to the hospital,
i stood in front of a room full of health care employees,
trying to tell them how important stories are.

and, to illustrate the point, i brought up this blog on the screen.
i showed the post i wrote about leanne’s oncologist,
and i read what he wrote on the blog in response.

and in the back of the room, in the last row actually,
sat a woman from oncology who worked with us when leanne was sick.
she worked with the nurses and the doctors and the people
who got leanne into the clinical trial.

she was there for everything, all the stories.
and there she was again, at the back of the room.

——

i want to play jeopardy where what is going on now
is the answer.

and i want somebody to give me the question,
the question to which all of this is the answer.

is it
what is coincidence?
or
what have we done?
or
can you love?

——

i’m back from the hospital now.
finally, after 10 days, there is an answer:

e. coli

“there is no treatment,” says the doctor. “most people recover.”

most people recover, i say to myself.

and then i almost start laughing
at the whole thing - how we’re back in here
almost exactly one year later, leanne crying in a hospital bed,
me writing on my computer, sometimes holding her hand,
sometimes not.

the walk through the hospital with it’s faux purses,
across the slushy parking lot alone,
driving to pick up lydia
and explain why mommy won’t be home tonight,
and who knows when.
how i assuage her with the notion of a strawberry milkshake
and how right now we watch a movie together
to distract ourselves from what is happening,
from what is not happening -
leanne picking at a salad,
playing candyland on the rug,
sneezing in threes or fours or fives.

when surrounded…

do not sit in the building and wait it out.

do as butch cassidy and the sundance kid did,
and, in gold and sepia, run across the courtyard
filled with the spraying bullets and sand and
that which has chased you and flee.

this time of year is rife with the riflefire of personal history.
a week ago i sat in a room full of nurses, talking with them
about patients who had changed them…
and thought back about where i was a year before,
talking with another group full of stories when my phone rang,
the cancer was calling.

and a year ago today we lived this
and said goodbye to what would’ve been our 2nd child.

and i could go on and on with markers and memories
and rewrite each entry in the new context of a year
that has been draped like a tablecloth over a scratched up table
to help it feel new again, softer at least.

but i won’t.

instead i’ll tell you a few stories before we, yes, flee
into the mexican ether and get away from anniversaries we choose
not to celebrate.

leanne decided that she needed to watch a knee surgery.
and so, she went over to the general surgery dept to watch one.
she said that only when she went in, did she remember that it was
the place where she was when she was very sick, the day they took
the baby, the day the placed the port, the day they took the bone marrow out.

it was quiet in there.  everyone was going about doing their jobs.

and she went up to the nurse:

“you look familiar…i think you were my patient,” she said.
“i’m leanne…..from physical therapy.”

and she said it was as if the whole room turned,
like a flower on a stem following the light,
as if they were waiting to hear her say her name,
and they all came over and hugged her.

—–

and there was something else i never wrote,
that the day we met with the oncologist for the first time
he said that he would not be there for the first round of chemo.

“why not?” we asked.
“i’ll be on vacation,” he said.
“where are you off to?” we asked.
“just staying at home with my family,” he said.

5 months later at the fundraiser, he showed up with his
family…..

and a 5 month old baby.

somehow, even being a new doctor, he had known
not to tell us about his wife’s pregnancy when he knew
that his patient would be losing hers.

and i don’t think he planned it, or even thought it through.
it just came naturally to him, to listen that deeply
to us.

—-

and so we flee.

the things they carried

last january, i had decided to re-read it,
tim o’brien’s masterpiece about war and its precursors,
the aftermath and the process.

i brought it with me on my trip to washington dc,
and was reading it when i got the call from leanne,
the call saying that she had cancer.

i remember rushing back to my cousin’s apartment,
grabbing my clothes and stuffing them into my suitcase,
and seeing the book on the bed and making a decision…
to leave it there,
to not carry it with me
into this new place.

(besides opening my notebook to write the letter to lydia,
it was maybe the only decision i made that day)

a month ago i asked my cousin to send it back to me,
and she did.

this is a train station in seefeld, austria.
it is the train station before the train comes,
or maybe the train station after the train has come and left,
the lights throwing themselves on the snow,
the footprints beginning to crust in the evening chill.

the commerce of coming and going,
of big noise and goodbyes and so much metal
echoes on and on.

i was there on wednesday, on the last day of my first trip since leanne got sick,
and i brought the book with me — two milestones to note:
that leanne is well enough that i would feel comfortable leaving,
and that i am well enough to feel comfortable being with the book.
it went in my bag to chicago then copenhagen, then munich, then innsbruck,
but i never took it out.

i’ve been living it for some time now.
pulling behind me what was happening at the time,
like a dog pulling a sled,
or, yes, a train, pulling a long line of cars behind it
and how it does not even know what it is pulling,
only that the load has been increased at times,
decreased at others, a car emptied, a car filled or added,
but the engine does not know, it looks straight ahead.

and we carry differently.
we not only carry what is happening,
but what has happened
and sometimes what may happen too.

carrying crisis is exhausting,
as is carrying the return…which only happens after,
the ability to process -
like feeling the train only after it has left,
which is the way i felt on that platform that day,
standing there when it should’ve been silent,
the tracks empty and slick,
but hearing the noise everywhere,
the clanging of so much weight being tugged.

—–

one of these days the book will make another trip,
from my backpack to my hands, from my hands
to my eyes, from my eyes
to my brain, from my brain
to my heart.

—–

for those of you wanting a plain old update,
leanne is feeling fine.
she has the hormone levels of a post-menopausal corpse,
though there is no sign of cancer, really,
and that is what we try to focus on.
most days.

say “aaaaaah”….

fear not, the doctor is in.

on this day of pumpkins and leaves and fresh chills in the air, i am not afraid.  not afraid of the witches or goblins or infinite masses of young boys swinging swords and guns.

better yet, i am not afraid of cancer.  at least not right now.

another 3 months have gone by, and, thankfully, another clear scan today.

so thankful.  still afraid sometimes.  still adjusting.  still not normal.  still though.  still.

fear less, the doctor is in.

it’s been a long time

since i’ve written.

since i couldn’t sleep -
long time meaning, in our new view of time,
weeks.

but here i am at 4am on a friday awake.

leanne was in bed next to me, and lydia next to her
and then me, listening.

i’ve been listening a lot lately.

—–

two weeks ago we heard 8 gunshots.

i got up and went to the window
and saw a car, all shot up and a boy
dragging himself in the street,
his white sweatpants mottled with blood.

two days after that, i heard a crash.

a man on our street
parked his car in his driveway.
he got out and somehow it rolled down, by itself,
and crushed another car.

and then on monday we heard sirens.

there were cop cars and a fire engine and a coroner
parked a few houses away.
our neighbor had killed herself.

this is the woman, who upon learning that leanne had cancer,
said:

i know exactly how you feel. i have fibro-myalgia.

we mocked her a bit.
ok, maybe a lot.

how could she have said this? we asked.

but what strikes me as true is that she probably did know how
leanne felt.

she knew what it felt like to have something eating you away
from the inside, out.

not the fibro-myalgia, of course,
but something else.

she was, in her way, trying to connect.

—–

so i’m awake tonight.
the first night in a long time.

i haven’t listened at night in a long time,
how i want to hear the trees turning red,
how they know exactly how to go,
how i can’t get used to the furnace turning itself on,
how i walked down the stairs and into my office
and browsed for a while,
not content to read about the Rockies winning in the desert,
how instead i chose to visit the blog of a woman
who i’ve written about before.

she’s the one who emailed us in the spring,
right after the post i wrote about leanne itching,
and how she read that and said she’d been itching since july,
and how she went to the doctor and she, too, had lymphoma.

there are few blogs i follow, but every once in a while i’d check in on her.

and the news was good.
she had practically the same thing as leanne, though, i don’t think it was as bad.
and she got a clean scan.

just like that.

even tonight when i went by there, i saw that she hadn’t written
since july, since that post about the clean scan,
and so i clicked on the comments.

and she’s dead.

the chemo had killed the cancer, yes,
but it had also killed her lungs
and though the cancer was gone,
she couldn’t breathe.

just like that.

—–

so tonight i’m writing.

i’m writing because i’ve listened for awhile and now it’s time.

i’m writing to tell you that i’m aware
of the “monstrously good dose of luck” we’ve had.

i’m writing because it is night again and i want to,
if only to let you know that leanne is still alive,

i’m writing to tell you
that it is so quiet tonight that i can, yes, even from downstairs,
hear her breathing,

that there was a reason for me to be awake tonight,

that the reason is to go outside, which i will do now,

and listen to the echo of the gunshots and the car crash and the sirens
and two women who have stopped breathing
and listen to the trees turn red
and exhale
and expire.

a word from our sponsors

a lot of people ask about it.
they see me spinning it around and around.
a nervous habit, i suppose.

it was made by a woman down the street
who specializes in making rings that live inside
of other rings, so that the inner one
spins and spins.

i came up with the word.
surprise, surprise.

recently i noticed that i didn’t have any bumperstickers
on my car. and i thought it was an indication that i don’t stand
much for anything.

but then i remembered the ring,
and how i wear it every day,
and read it all the time,
and maybe, hopefully, live it.

why story? people ask.
and i say that it’s a reminder to me
that my life should be something worth
writing about.

that everything i do should be worth writing about
and telling about and listening to.

and then i think about our life since january,
and how it’s been exactly that,
and how i’ve done exactly that,
maybe, truly, for the first time.

and it feels good, even though we didn’t ask for this,
to be able to be true
to one’s word,
to the one word,
story.

——-

if you had a ring and could pick a word,
what would it be and why?

all in a year

1 year ago today, we grinned and danced in the open sky in the middle of wyoming as rudy and heather exchanged vows…( i would later come to identify this day as the starting point of our second pregnancy)….

2 years ago today, we felt humbled and inspired and safe in the red wood forest as matt and florencia poetically had all of their friends pronounce them husband and wife….

3 years ago today, dan and i went out for our first date as parents, leaving a 5 week old lydia with suzanne, and dan made the family rule that when we go out as a couple, we can only talk about lydia for the first 10 minutes, then it’s back to focusing back to us, the couple….

4 years ago today, danny accompanied me as i sang with tears flowing while nancy and cliff stared into each other’s eyes and haikus atop a mountain ranch ….

and 5 years ago today, my husband walked around me seven times and then i around him, under a chuppah prayer shawl in a circle of wild flowers as the cowboy rabbi blessed us and horses brayed and  125 candles hugged us in our first dance and 100 fruit tarts disappeared ….

and i feel so happy

with you

to be

here

happy anniversary, danny.

i am smitten to think of what the next years may bring.