Reflection - A New ACMImimi Video Project

I am cross-posting this from my ACMImimi blog. Thank you for helping make a great video that can inspire others...

I've written a new song, "Reflection," that speaks about the cancer journey as seen through the eyes of a caregiver and lover of one experiencing cancer. You can listen to an acoustic demo of the song at ReverbNation or through the widget below. The lyrics are at the end of this post.

Free EPK from ReverbNation.com

The Reflection Video Project 

I'm now working with some musician friends -- Bill "Bumblebee" Davis and Travis Erwin -- to create a more polished version of the song, which will be soundtrack for a new video featuring, well, I hope, you. If you have a loved one -- be they a spouse, uncle, mother, friend -- whose chronic illness, cancer journey or other healthcare challenge you'd like to celebrate, please send an email to Reflection@ACMImimi.org:

• Attach a picture (higher resolution is better - JPEG preferred) 
• Include a brief quote, message of hope or just an "atta-boy" note that's about twitter length (140-ish characters) and suitable for sharing 
• Let us know the names of the folks in the picture (first names only if you want) and where you are from (state/country is sufficient if that's all you want to share). 
• Tell us your story too if you're willing to share it. 

You can also post your picture/message/story as a comment on this blog post. By sending the picture, names and message, you are giving me permission to use them in the video montage, post them here on ACMImimi.org, and otherwise use them to promote the song and video.

Contributors to the video will, of course, automatically be eligible to become Fellows of The College (but you still have to fill out an application form). Unlike many honorifics, the FACMImimi designation comes at no cost to the recipient (at least until such time as The College can figure out a way to charge real money for it) and is based purely on one's contributions to the art and science of Medical Informatimusicology.

Okay, that last paragraph wandered back into the highfalutin voice of ACMImimi. But please know that we at The College are grateful for all that you do for making healthcare work better and loving people with medical needs. We hope this project will inspire us all to be better caregivers and to see the beauty in our loved ones even as they face difficult health challenges. Thank you.

Reflection 

Autumn rustles out my window
Winter's time is near
Shorter days cast longer shadows
On the path we walk from here
It's a detour undesired
Still it's ours to share
With a passion so inspired
I'll go with you anywhere

Just let me be your mirror
So you can see
Even as you're changing
You are beautiful to me
Let me be your mirror
Let me be the one
Let my eyes reflect your beauty
As the moon reflects the sun

It's easy to be frightened
When the weather rolls in
The senses are heightened
And faith wears thin
All the slings and arrows
Start to take their toll
If we focus on the narrow
We miss out on the whole

So let me be your mirror
So you can see
Even as you're changing
You are beautiful to me
Let me be your mirror
Let me be the one
Let my eyes reflect your beauty
As the moon reflects the sun

I can't promise you a miracle
Still I'll pray one comes our way
I'll be right here through it all
And I'll love you every day
In every way
So hear me say

Please let me be your mirror
So you can see
Even as you're changing
You are beautiful to me
Let me be your mirror
Let me be the one
Let my eyes reflect your beauty
As the moon reflects the sun

(c)2013 Ross D. Martin

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

Decisions, Decisions

Clearly, I am not a dedicated blogger. After sharing a string of posts on Kym's cancer journey, six weeks came and went without a peep from me or a peck on the keyboard for this blog. But those six weeks have been anything but mundane. Kym is recovering beautifully from her initial surgery and is feeling great. She continues to focus on the full-time job of deciding on and preparing for her treatment path.

Her path has not been straightforward. This is more because we are in the enviable position of having options -- something we know many who face a cancer diagnosis don't get to enjoy. The findings from Kym's pathology reports and the additional biomarker tests have been, for the most part, very encouraging. She has Stage IB ductal cell carcinoma, which means that the cancer, though locally invasive, has not spread beyond her breast tissue. Her sentinel node biopsy showed only microscopic cancer and is considered node negative for staging purposes.

Chemotherapy would be a standard option; a few oncologists would recommend watchful waiting at this point. Kym has been working with Donnie Yance, a master herbalist in Oregon (www.mederifoundation.org), to develop a botanically based protocol to optimize her health and create a cellular environment that is not receptive to tumor growth. After many discussions and consults, a great deal of personal research, and much prayer, she has decided to postpone chemotherapy.

Just a sample of the biomarker studies Kym obtained on her cancer profile

I've thought about what I would say in this post for quite a while and it's frankly gotten no easier with time. While I have some misgivings about Kym's decision, I am also completely supportive of her decision. There are a couple of reasons for why I feel as I do. The rationale for her decision is well reasoned, so I don't think Kym is just eschewing traditional medicine because she is being naive or ill-informed. On the contrary, she has maintained an openness to whatever options make the most sense for her. At the same time, Kym is not just accepting whatever the doctor says; she is the personification of an engaged patient. And she has long understood the benefits of complementary approaches to health through her 30-year experience as a cancer survivor and her training as a certified holistic nutrition consultant.

I've attended or have listened in on as many of Kym's consults as possible. She's received excellent if not sometimes conflicting advice. Donnie's knowledge of tumor markers, current research on treatment protocols, and the effects of botanicals on the human body is truly impressive. I cannot find fault in the level of scholarly research he has personally done to arrive at his recommendations. In all of this, I feel very much the novice and, like most people, have to rely on the recommendations of experts and trust that they are bringing unbiased perspective to the table.

Still, I know my own comfort zone. I trust allopathic medicine because it is what I know. I also know its limitations and that it is subject to its own biases. How many promising therapies have come and gone when the initial clinical evidence prompting FDA approval prove not as demonstrable in everyday clinical practice? And how many times have we later learned that commercial interests shaped the initial evidence?

So I remain uncertain of which path makes the most sense. If it were me, I would have gone the "traditional" route and subjected myself to a year of chemotherapy, with all of the attendant challenges. But it's not me. It's Kym. And that's the second reason I support her decision, because the decision is ultimately hers to make. In truth it's the only important reason for my support.

Kym has also decided to go ahead with a mastectomy on the currently unaffected side. She is among a growing number of women who are choosing this option of a prophylactic mastectomy -- removing the breast tissue before there is evidence of disease. Most oncologists will tell you that the evidence for such a decision is not clear. We've also seen them quickly agree that it is a reasonable choice for Kym because of the mantle radiation she received in the past, making her risks for another breast tumor in the future even higher. So just after Christmas, Kym will have her second surgery.

More Decisions

This whole experience has given us reason to pause and consider some broader issues of how we are living our lives and how much time we are carving out for work versus family. I have been on a fairly high-intensity career track for the last dozen years -- first at Pfizer, then in management consulting at BearingPoint and Deloitte. My four years at Deloitte have been fascinating and, for the most part, very enjoyable. But it is an intense and somewhat relentless place. Performance expectations are high, as are the rewards.

Back in September, the day after we learned about Kym's diagnosis, I was on a call with Jonathan Grau from the American Medical Informatics Association -- my professional association -- about an industry survey on health informatics we were jointly publishing. On the call, I shared my news and Jonathan shared his -- he was leaving AMIA. Minutes after the call, he texted me: You should seriously think about taking my job.

Then the day after that I got a call from a good friend with whom I had been considering partnering for many years. He indicated he was ready to take the plunge and have me join his small but growing band of folks. Within a couple of weeks, I was staring at two unsolicited job offers.

Three, really, as Deloitte leadership had made it clear that they would be willing to work with me on whatever arrangement made sense for me as Kym went through treatment: work from home, focus on business development or eminence -- whatever would work best. But Deloitte is investing heavily in informatics, having recently acquired Recombinant Data, and is building a formidable federal strategy practice. I know myself and the way the firm works; it would be extremely hard to keep myself from being pulled into the middle of these important endeavors.

In the end, the decision was pretty simple. I needed more balance and a more focused career for a season. Staying at Deloitte, I would be like a kid in a candy shop who's supposed to stay on a strict, low-carb diet; and my friend's offer was great, but it was also in the consulting realm, which wouldn't really change the dynamic of what I do for a living.

So on 12/12/12, I will start my first day as VP of Corporate Relations and Business Development at AMIA. AMIA has over 4,000 members, but only 15 (and as of next week, 16) staff members. It's a role I can get my head around and something I feel comfortable doing. No doubt, there will be pressures of a different kind in this role. The AMIA board has high expectations for the growth of the organization and rightly so. I personally believe that this is the time for the informatics profession to experience a real transformation.

Our need for good data, information flow and better clinical decision support is real and more critical than ever. That information needs to flow not just to researchers and clinicians, but to the people receiving treatment and to their loved ones and caregivers who are invested in their health. I feel that need on a very personal level every day.

The Sling is the Thing

We saw Kym's plastic surgeon, Dr. Doug Forman, on Monday (one drain down, one to go!). One of his staff members commented on how they recommend their patients wear a sling, but most don't heed the advice.

I bought this $12 sling at CVS for Kym after her latest breast biopsy. Then as now, it has really helped keep Kym comfortable postoperatively. It is easy to put on and take off, is reasonably stylish ("Black is always in fashion" according to Kym), and helped remind her to keep her arm to her side even after the immediate pain subsided.   

Plus it makes a great pity bandage! People know to hold a door and to avoid giving you a tight squeeze when they say hello. Maybe it can also get you out of a speeding ticket if you really work it (though I'm not sure it will show up on one of those dastardly speed trap photos).

And can I just say how amazing my wife looks? I never grow tired of gazing upon her beauty...

No Nodes is Good Nodes

What could bring a smile to the face of a woman whose breast has just been surgically removed from her chest?

Hearing your surgeon say, "Your nodes are negative."

Kym is sore, sleepy and very happy. Definitive pathology results will come in a few more days, but we have every reason to believe that Kym's cancer has not spread beyond her right breast.

My bride will be coming home with me very shortly.

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.