A Man among Millions

Today was my last day as a Specialist Leader at Deloitte Consulting. It was a special day. I got to be the emcee for ONC's all-day session on health information exchange at their annual meeting in DC. It was a day spent with people with whom I have been working for the last three years from all over the country -- many with whom I had worked shoulder to shoulder as I traveled to more than a dozen states to help them develop and execute on their strategic and operational plans for health information exchange. 

More and more I'm being asked to facilitate meetings. I try to bring some energy to the day and add some of my creative juices to the conversation -- through a song or a story or something new. These last few weeks, I've been so busy with Kym's health and my transition from Deloitte to AMIA that I didn't have time to think about doing something special for this meeting.  

Then last week, I had the privilege of spending three days with members of our armed forces at Aberdeen Proving Grounds on the Maryland coast at an "Innovation Deep Dive" session to develop innovative strategies for targeting tobacco use among our enlisted ranks in all the branches. There I met HN Taylor Mickal, a young hospital corpsman in the Navy who also happened to be a spoken word poet. We asked him to write something for the meeting and he shared an amazing piece with us the next day called Dive Deep. His poem inspired me to try my hand at free verse -- something I'd never really approached before.

Over the last 24 hours, I wrote this piece and was honored to be able to share it with some 200 HIE warriors at the end of the day. I am so grateful to ONC leaders Claudia Williams and Erica Galvez for giving me the opportunity to share a day with people I hold in such esteem. And am even more grateful for the way they received this piece.

Thank you for doing this important work.

A Man among Millions

tick tock

check the clock

it's moving faster

relentless

in its quest 

to stop us in our tracks

can you hear it?

faster than my beating heart

thumping with anxiety

checking for the reaper

over my shoulder

who's on a bender

hell-bent on the hunt
to take down those I love

tick tock

time won't stop

or take a break or hesitate 

to cut us off at the knees

yet here we stand

for what we believe 

can make a difference 

if we only make it flow

today we stand for flow --

for what we know is essential to the health

of this thing we call a healthcare system

we stand for flow

for overcoming the inertia of standing still

pushing information out 

transforming it from solid state to liquid gold

letting it go where it needs to go

...flowing into the chasm separating us

from the quality we pay for but don't receive

...flowing so the liquid data 

cascade and echo 

making ripples of insight

that concatenate to create tsunamis of knowledge

and so we organize ourselves

into exchanges

every state and territory

building its own story 

of how to make this work

in local circumstances

taking chances with taxpayer dollars

that we could never afford 

on our own accord

trying to fix on a massive scale 

the brokenness of our system

that we in our confessed complacency 

have grown to see as normal

millions --

nameless, faceless

suffering under the burden

of a system uninspired 

to go the extra mile --

are saying enough

I have a name

I have a voice

I have a face

I take a stand

here I stand

just one example 

of a man among millions

with a family lost in this maze

with a father who died

from cancer of his phantom prostate

that had been removed twenty years before

no PSAs for twenty years

why test for something long removed?

maybe because there's a chance it's not all gone

maybe the data are all there to know the answer

of whether it would have made a difference

this one simple test

here I stand 

just one example 

of a man among millions

with a family lost in this maze

with a mother slowly losing her way

keeping the memories of her youth

but forgetting those formed an hour ago

her children 

long away from their hometown

trying to connect the dots of her care

by remote control

"help! I've fallen and I can't get up"

doesn't reach to Atlanta or DC

so we rely on old technology of phone and fax

which isn't up to the task

as she rides 

from assisted living

to hospital

to rehab

and back again

while her medical records struggle 

to keep up the pace

here I stand

just one example 

of a man among millions

with a family lost in this maze

with a young son who enjoys good health

but has already faced the surgeon's scalpel 

at an age too young for his memory to recall

exactly why he has that scar on his back

or how his kidneys lack the full capacity

others take for granted

how will he know 

when he comes of age

what this means for him

his records passed down

from his elders

like an oral history

told around a campfire 

after a hunt for mastodons

here I stand

just one example 

of a man among millions

with a family lost in this maze

with a wife who bravely faces

cancer number three

in thirty years

who alone carries the burden

of coordinating care 

among the dozens and dozens

of providers who focus on

the particular part of her they understand

who alone carries the records

from place to place

from year to year

from diagnosis to diagnosis

hoping she can keep it all straight

so at the very least they do no harm

here I stand

one of the lucky ones

a man of means

with coverage

with knowledge

with friends

who stands helpless

to make the system work

for those who are the world for him

here I stand

in a room of my heroes

who possess amazing superpowers

to bend maze corners

into straight corridors

and change the flow

from a trickle 

to a torrent

I don't presume to know what drives you

what compels you in the morning to forego

another fifteen minutes sleep

and return to the battle

to do the heavy lifting

to add another line of code

to write another line of policy

to sign up one more to join the exchange

to solve one more problem

to make one more connection

to make it flow

but if you need a story to motivate

to steel your resolve to press on

mine is here and free for the taking

still better

forget my story

and tell your own

shout it from the rooftops

or whisper it only to yourself

but keep that picture

sharply focused in your mind

to give you the inspiration

to do the work

so we all can be 

one among the millions

whose information flows

The Waiting Place

You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.
Oh, The Places You'll Go - Dr. Seuss

I sit in The Waiting Place as I type this post. Not a figurative one, an actual Waiting Place -- one of the Waitiest, Weightiest Waiting Places of them all.

I sit in the waiting area of Suburban Hospital in Bethesda, MD as Dr. Pamela Wright removes my wife Kym's right breast and Dr. Doug Forman begins the process of replacing it with something that cosmetically approximates her breast. 

At this particular Waiting Place moment, I am waiting for the news of whether Dr. Wright finds metastases in Kym's axillary lymph nodes to go with the infiltrating ductal carcinoma and two areas of ductal carcinoma in situ (DCIS) that were found by ultrasound-guided biopsy on September 11th. That little bit of information, determined by frozen section of her sentinel lymph node, will determine whether Dr. Wright will go further with her surgery and resect two of three layers of Kym's axillary lymph nodes and whether Kym will need to add a course of radiation to her planned chemotherapy.

For those of you still trying to decrypt that last paragraph, here is the sum of it:
The love of my life has breast cancer.

My few years of taking care of patients as an obstetrician/gynecologist gave me a sense of what it is like to watch someone hear the word "cancer" for the first time. Once that word enters the room, it sucks the meaning out of all other utterances, making it difficult to process anything else.

For us, the word's impact is a little less dramatic if only for its familiarity. If you have read any of my other posts on how Kym and I met, married, and "made other plans," you will know that cancer has been a central theme in our lives -- especially in Kym's as her current breast cancer completes her carcinoma trifecta that includes Hodgkin's Lymphoma (in 1983) and melanoma in situ (2004). We know the word cancer is a scary word, but it is not all-powerful, nor is it necessarily an absolute death sentence.

So we wait -- she lying on a surgical table in a dreamless, medicated slumber and I in the relative comfort of the waiting area a few hundred feet away.

We have decided that a good therapy for us will be to write about the journey. We know that the story, however it unfolds, will both help us sort out our feelings and will perhaps give others some perspective as they experience a similar walk through the shadowy corridors of uncertainty and angst. Our own journey has been made less anxious by the postings of people like John Halamka and his wife Kathy as he dutifully chronicled her journey through breast cancer over the last year.

This particular Waiting Place wait is almost over; Dr. Wright will soon come out with the news of how Cancery Kym's cancer is. Then we will enjoy another wait for the more definitive pathology report and then the recovery wait and the chemotherapy start wait and many other waits beyond. But we are not focusing on the wait; our minds and hearts are on the moments that fill the waits, those Magical, Meaningful, Matterful moments that make life worth living.