Sunday, October 13, 2013

The Boy at the GateThe Boy at the Gate by Danny Ellis
My rating: 5 of 5 stars

The Boy at the Gate is a deeply personal memoir. It speaks to the lost child in every soul by channeling a boy's confused, innocent, desperate voice to convey the story, then weaving an adult's wisdom and perspective into the book to fill in the gaps and contemplate the life lessons that can be drawn from such a harrowing childhood.

This review is not without bias: I consider its author, Danny Ellis, a friend--mostly because we share a common experience of having our personal journeys palpably affected by the music and life of David Wilcox. We have only met on two occasions--once at a vocal workshop a couple of years ago and more recently at a house concert where I bought this book. But Danny's open and gentle spirit makes it easy to feel he is your friend even after single meeting. He has also been in my house (virtually) on a number of occasions as he gave vocal lessons to my wife via Skype. The reading of this book helps me understand and appreciate more fully the depth of his insights into vocal technique through his decades-long study of the breath.

I have given very few books five stars on Goodreads and I give this five-star review not because Danny is someone I know, but because The Boy at the Gate is an amazing example of memoir done right. Were I to have done a similar review of the CD 800 Voices on which this book was based, I would probably have given it a three- or four-star rating. Despite my affection for singer-songwriters and story songs, I never quite got into Danny's CD, though I loved the openness he displayed in sharing his songs about his experience of being abandoned by his "Ma" and left in the oppressive and abusive environs of the Artane Industrial School in Dublin, Ireland. Now, having read his remarkable account, I look forward to revisiting that CD and taking those songs in with new appreciation.

The Boy at the Gate is Danny's gentle and forgiving telling of what can only be described as a heart-wrenching, soul-crushing and physically abusive childhood. Danny grew up in a home of neglect in Dublin and then, in 1955, was thrown into a Lord of the Flies world with more than 800 other boys from ages six to sixteen. The Artane Industrial School was even worse than being lost on an island with a bunch of boys because there was adult supervision - supervision in the form of severe physical abuse and emotional neglect handed down by a staff of just forty members of the Christian Brotherhood. The abuses of Artane have been well documented by the Ryan Report.

It is also the story of the redemptive power of music and how Danny was able to survive the trauma of the Artane prison by pouring himself into the Artane Boy's Band. Music keeps him grounded and gives him hope. Music gives him a constructive place to push his energy, his anger, his cries of anguish. Music gives him a future--something that many of the sixteen-year-old graduates of Artane were unable to find as the perverse social skills (really, survival skills) they developed on the desolate playground of Artane prove utterly ineffective outside the schoolyard walls.

I found many aspects of this book remarkable: Danny elegantly captures the voice of his little boy self. We see the streets of Dublin through his child eyes and hear it described through his voice of innocence in the truest sense of the word innocent. Even as he recounts his childhood criminal escapades of stealing food for himself and his two younger sisters and twin baby brothers, you understand how limited is his comprehension of the events he witnesses and the emotions he feels.

Danny effectively moves back and forth between his child voice and his own adult voice as he tells the story of how these experiences ultimately unleash a torrent of emotions and memories that quickly take the form of a collection of songs--his 800 Voices CD and, still later, this memoir. The echoes of that young voice resonate with the voice of his adult self and the co-mingling of these distinct voices is a tribute to Danny's gifts as a musician and arranger. That he is able to accomplish this same richness in prose--his second language--as in music is a thing to behold.

I broke my habit of night-time reading to finish the last 25 pages this morning. The closing revelations were truly surprising and moving. His Epilogue, Author's Notes and Acknowledgements appending this memoir were not afterthoughts; they complete the story by adding important context and perspective to the emotional portraits and landscapes he lovingly crafted in the prior pages. Those final pages also demonstrate the remarkable writing abilities of the adult-voiced Danny. The contrast of the early pages with the latter reminded me of experiencing a Monet retrospective; I was dutifully appreciative of Monet's impressionistic works, but came to see them on an entirely new level once I saw his earlier works that included lushly detailed paintings. I was able to see that his Impressionism works, like Danny's childhood recollections, were not lazily slapped together, but were deeply artistic and telling communications of the essence of the captured moment.

Perhaps what was most remarkable to me was the redemption he creates in the telling of it all. He leaves me wanting to be that same spirit--one who understands the human condition and stands ready to forgive and receive forgiveness from others and from myself.

View all my reviews

Monday, April 08, 2013

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.


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

Wednesday, December 12, 2012

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

Sunday, December 09, 2012

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.

Wednesday, October 24, 2012

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...


Monday, October 22, 2012

Love Delivers


Like many folks these days, we have a home phone that receives many more calls than are answered as most calls are of the telemarketer / political campaigner sort. But we've been answering more calls this week... and the door... and email as friends and colleagues have been pouring out love and concern.

We have been so grateful for these thoughtful gifts and words of encouragement. They have indeed lifted our spirits and have reminded us that we are not alone in the struggle.

Perhaps the most touching gift of all was the basket full of cards we received from our son's 6th grade class. T started attending a Christian school this year as he and Kym have both recently become Christians and are building deep ties with the faith community. T's class spent a whole period working on cards that included a Bible verse of encouragement. Each one was a cherished reminder of God's love and care for Kym.

To all who have reached out with flowers and words of support and encouragement, thank you! To  those who have offered to make food, we're working on that! More later.

Sunday, October 21, 2012

Happy Birthday to Me

There's just no denying it -- today was not a birthday full of celebration. I like birthdays all right and am not particularly afraid of uttering my age (48) or of getting older. I still feel like I'm just getting started and, other than the occasional back problem stemming from high school marching band (I was a 5-foot tall bass drummer) and my recent need for reading and driving glasses after enjoying 45 years of perfect vision, I feel fortunate to enjoy excellent health.

My biggest age-related shocker came a year ago when I met Katelyn, one of the new analysts at Deloitte. Analysts are usually campus recruits -- landing their first job out of college. Some quick mental math brought me to the realization that Katelyn was born in 1989, the year I delivered my first baby in med school.

During the five years I did obstetrics, I delivered around 600 babies and most of them seemed to be named Katelyn or some variation on the theme. There were some in-vogue boys names too -- like Conner and Max maybe -- but Katelyns were popping up more often than Super-PAC ads in an election year. And their parents honestly thought that they were being so creative naming their new baby girl. I didn't have the heart to tell them that their daughter was the third Katelyn of the day.

So I'm standing in front of this very grown up, professional Katelyn -- a colleague -- trying to keep from admitting myself into an assisted living facility. And I confirm that, yes, she was born in 1989. I could feel the Alzheimer's setting in. Since then I've met at least a dozen Katelyns (Kaitlins, Katies, Caitlins -- they're all the same) running around Deloitte pretending to be adults when they've barely had enough time to be potty trained. And the real pisser of it all is that they really are adults.

So I don't mind so much that my birthday this year was overcome by recent events related to Kym's breast cancer. Kym has been doing remarkably well. She's off her pain meds and is only taking a muscle relaxant to help with the discomfort related to the expander. Still, she's moving slowly and, following yesterday's cooking marathon, has been decidedly pooped. After making an appearance at church, she spent most of the day napping. Which was fine since Kym and I had already celebrated last weekend when we attended the wedding reception for friends Harry Greenspun and Kerry McDermott -- where this picture was taken. We got a room on Marriott points and danced the night away, knowing that it would be a while before Kym was ready to cut a rug again.

Instead, I took Taylor out for breakfast and that was pretty much the extent of it. In fact, the only way I could really tell it was even my birthday was from the many nice emails and notes on Facebook I received. A number of those notes included acknowledgements that they knew far too well what I was going through because their spouse was going through the same ordeal.

It struck me that I am now a man of a certain age where friends, loved ones and colleagues are starting to get hit with those medical issues for which they seem far too young to be eligible but are actually just early adopters on an inevitable curve of far too commonplace ailments.

Let's hope for the sake of all those Katelyns out there that all those walks and races and other fundraisers for the cure have their desired effect so that no twenty-something woman need fear that they will someday have to miss celebrating a birthday because of a disease, but will be blissfully ignorant of what it means to have breast cancer.

That would be the best birthday present ever.

Saturday, October 20, 2012

Breast Cancer Couture

Kym and I made a quick stop to see the plastic surgeon the day after Kym's mastectomy.  We wanted to make sure her Jackson-Pratt drains were working properly as one of them seemed to be blocked. Everything was working fine and we got a chance to take a quick peek under the dressing to see Dr. Forman's handiwork. The site looked great. We had been concerned about the integrity of Kym's skin since her tumor has infiltrated the skin's surface forcing her surgical oncologist, Dr. Wright, to make a wider skin resection than we hoped. Thankfully, Dr. Forman had the necessary room to spare to insert an expander, which he will gradually inflate with saline to stretch Kym's skin in preparation for her permanent implant when the time is right.

With her post-operative harness and two drains on her side, I thought Kym looked like a bustier-wearing gunslinger...

Drains aren't too much fun to manage, but they are fairly simple to handle once you get the hang of it. Just as you can find a video on YouTube for learning how to do everything from French braiding hair to wrestling alligators, you can find videos for how to care for a JP drain. I put in a few of these drains during my brief stint as a clinician and was comfortable with them, but seeing how to handle them on a video can really help the uninitiated.

Kym and I are committed to chronicling our experience on this cancer journey. There are many directions I can imagine going with these posts -- from providing perspective on the caregiver experience to delving into the emotional side of it all. Our goal is to be helpful to others on the journey and to help ourselves keep perspective through our own. If you have thoughts about what you want to see here, please share.

Wednesday, October 17, 2012

Kym's Drive-By Mastectomy

In my brief career in obstetrics (in the early '90s), HMOs were coming into fashion. The big patient advocacy kerfuffle was all about "drive-by deliveries" -- where the HMOs were pushing to get new mothers out of the hospital in 24 hours.

How times have changed! Kym's 7:30am mastectomy and the first phase of reconstruction went off without a hitch. She rolled out of the OR before noon and we rolled into our driveway at 4:30pm -- exactly 11 hours after we arrived at Suburban Hospital in the pre-dawn darkness.

Our surgeons both encouraged us to go home without an overnight stay if we felt ready for it. Kym never had a Foley catheter -- they just told her to call if she couldn't void by 8pm.

But in contrast to the cost-constraint HMO mentality of the '90s, the focus was all on quality and outcomes optimization. The routine use of catheters in surgery ends up increasing the risk of infection. And spending more time at the hospital increases the risk of hospital-acquired infections too.

It turns out that quality care and cost-effective care aren't necessarily mutually exclusive.

We were thrilled to be home eating our own food and pampering Kym. We couldn't be happier with the care we received from the physicians and staff at Suburban. They focused on getting the job done and treating Kym with respect and care -- including respecting her OCD issues (more on that another day).

We are home, Kym is enjoying her meds, and we are so very grateful for the prayers and support of friends and colleagues.

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.

Tuesday, September 04, 2012

HL7 Announces Free Standards

Back in 2006, I was one of three final candidates to be the first CEO of HL7.  My big push in my final interview was to advocate for changing HL7's business model to make HL7 standards free for use.  I strongly believed that doing so would present a short-term risk as the organization transitioned from relying on membership and license fees to trusting that a different kind of sustainability model that didn't include license fees would still work for the organization.

Dr. Chuck Jaffe was ultimately selected to be CEO and remains so today.  I was disappointed in not making the cut, but knew that he was an understandable choice by the board.  This morning, Chuck made an important announcement: HL7 would indeed be transitioning to a free license model for all of their standards and much of their intellectual property.

The announcement to members is below.  I couldn't be more thrilled!


To the HL7 Membership:

Today, the HL7 Board of Directors committed to licensing its standards and other selected HL7 intellectual property free of charge. This policy is consistent with HL7’s vision of making our collaborative and consensus-driven standards the most widely used in healthcare, and with our mission of achieving interoperability in ways that put the needs of our stakeholders first. Our primary aim is to maximize benefits to our members, the healthcare community, and all those who have contributed to make HL7 standards so successful.
The implementation of this important decision requires careful planning and due diligence, which is expected to take several months.  The policy will go into effect after analysis of input from our members.  We would welcome the opportunity to discuss this with you, and to gain your insights and suggestions for moving forward.

In order to provide clarification of several critical issues, please go to the following link for a detailed FAQ document: http://www.hl7.org/about/faqs/FreeIP.cfm

A global press release explaining our plans will be issued at noon EDT today. HL7 members are also invited to attend one of two webinars scheduled this week in which I will discuss these plans and give our members a chance to ask questions.  Members are invited to send their questions in advance of the webinars directly to our Director of Membership, Diana Stephens at Diana@HL7.org. The webinar information is listed below:

·         Wednesday, September 5 at 11:00 am EDT. Please register at https://www2.gotomeeting.com/register/973015242
·         Thursday, September 6 at 4:00 pm EDT. Please register at https://www2.gotomeeting.com/register/263054898

We recognize that our members are the backbone of HL7 and we look forward to continuing our partnership with you,