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,

Sunday, February 19, 2012

Behold, the Power of Twitter

Behold, the power of Twitter! I arrive at a store at 6:55pm to grab an essential item for #HIMSS. Door locked, employees inside ignoring my pleas. I type the following the following message on my iPhone: "Employees at #[NameofNationalChain] in Germantown decide to close early and won't let me in the store." Held my phone against the front window and knocked until one of them finally came over to read it. "Don't make me hit send," I say through the glass. Two minutes later, I'm out of the store with my item.

Sunday, January 29, 2012

On Life and Making Other Plans

This is the last of a three-part posting about my dance with the love of my life, my wife Kym. You may want to read Part I, Shall We Dance?, then Part II, Romance, Meet Reality, and see Regina Holliday's post on the remarkable Walking Gallery paintings she made for us.

Our Wedding Day - Summer Solstice 2000
John Lennon's famous quote--life is what happens when you're making other plans--aptly describes our experience shortly after we exchanged vows on Kaua'i's Shipwreck Beach as the sun set behind us. We had quickly fallen in love with The Garden Island and had worked out a five-year plan that included the goal of owning homes in Boston and Kaua'i so we could experience the best of both worlds.

That five-year plan lasted about two weeks.

We came home from our honeymoon to the news that Kym's stepfather--a man I never met because Kym was no longer on speaking terms with him--had died that very day.

His funeral was held in Canton, CT (where Kym grew up) just a few days later. It was a very strange and sad event.  Strange because most every conversation we had in the receiving line went something like "I am so sorry for your loss... and congratulations on your marriage!" And sad because there wasn't a single person among the few who attended the service who was sorry to see him go. They dug up a drinking buddy to do the eulogy and the one remotely positive thing he could say of Kym's stepdad was that he was smart.

But, as Kym had already told me, he used his intellectual powers more as a weapon than a force for good. I got to see this firsthand as we sorted through his meager personal effects with Kym's mom and found a pile of editorials--written for no apparent purpose other than his own amusement--that were full of misogynistic sentiments and spiteful words shrouded in clever turns of phrase. We read a sampling before throwing them all in the trash.

The funeral was a painful way to start our marital bliss. As we returned from Connecticut a couple of days later, Kym felt physically and emotionally spent.  Her significant difficulty walking up the stairs to our second-story apartment was inexplicable given her commitment to personal fitness.

Even though she hadn't yet been "late," I thought she should check the box and get a pregnancy test. Two lines. An OB friend loaned me the keys to his office so we could get early ultrasound confirmation of her positive test. The grainy image of a tiny sac left no doubt about the result--or the timing of conception... our wedding night.

Putting all of the pieces together, we ultimately figured out that the Pill had been the culprit causing many of the symptoms that led to Kym's C/T scan... that led to the (incorrect) diagnosis of a recurrence of Hodgkin's Lymphoma... that led to our decision to set a wedding date sooner than later... that led to that magical evening on the beach. The Pill had also thrown off her schedule so she had no idea our wedding night was right in the middle of the baby-making window. Clearly, Kym's radiologic oncologist had succeeded in preserving her fertility.

I had already started down the path of finding a urologist so I could get "snipped" about three weeks after our wedding. Some say our son's conception during that brief window of opportunity was fated; others say it was an act of God's will. Whatever the source, you could make the argument that the vehicle for either option was the Pill--a conclusion made even more ironic by the fact that I was trained as an OB/Gyn.

Understandably, this seminal news left us stunned. The deer-in-headlights sort of stunned. It took us a good bit of soul searching to figure out what to do with this fork in the road. We hadn't looked at each other with the co-parenting lens for longer than it took us to laugh at the absurdity of it. Now we had to look deep into our own hearts and make a decision about something for which neither of us were truly prepared.

In the end, it came down to some simple calculus. We went to a local golf course--Kym had been giving me lessons on one of her greatest passions--and talked through it all while strolling though that idyllic setting. We concluded that, as much as we weren't ready to be parents, having a child could be an incredibly healing and enriching experience for us both. We knew the opportunity to share this particular journey together would almost certainly never come again.

So we chose to accept it as a gift and prepare to take a whole new direction. Gone were my visions of being a "kept man" so I could work on longer-term goals, inventions and creative works. I needed a "daddy" job with health insurance and a steady paycheck.

The pregnancy had its difficulties, with some early tests indicating that all was not well and some emotional challenges for Kym as she struggled to fully embrace motherhood during her pregnancy. All our concerns were assuaged when a very healthy, 10-pound 2-ounce Taylor used his well-developed lungs to let us know he was more than okay and none too happy about his emergence.

Fast forward almost 11 years. Kym and I have had our rough spots. Our marriage has been far from perfect and there have been at least a couple of times when we wondered why we were together at all. Today I can say that Kym and I are both happier than we've ever been--not just since our wedding day, but in our lives. Though I wasn't looking for a "real" job--I've found a meaningful and rewarding career in shaping the future of healthcare in my consulting work. It is demanding, but it still leaves room for family and creative pursuits. Kym has had time to focus on raising Taylor, completing her MBA at UConn, and, in the last several months, finding peace in her new-found Christian faith. And Taylor is thriving--blogging about his inventions, making increasingly impressive videos, and becoming a Black Belt in karate. We both continue to become more whole as individuals--my geek side would say we're asymptotically approaching wholeness--and Taylor has been a profoundly important part of our personal journeys.

What started as a passionate romance has grown into something even more powerful--a family.

Thanks, Regina, for inspiring me to look back at those early years so we could appreciate where we were when we started and how far we've come.

Tuesday, January 24, 2012

Romance, Meet Reality

This is Part II of what will likely be a three-part posting of the story of my dance with the love of my life, my wife Kym.  You may want to read Part I, Shall We Dance?, first and see Regina Holliday's post on the remarkable Walking Gallery paintings she made for us over the weekend.


Regina Holliday's Walking Gallery Painting:
"Knowing the Score"


In December of 1996,  I left Ohio and a very fiscally appealing if not somewhat limiting job as an Obstetrical house physician intent on getting Michael Crichton's job--or at least becoming a recognized screenwriter/novelist/physician like Dr. Crichton.

I packed up a few things in the largest U-Haul trailer my Saab could pull and left for Southern California, where I planned to pedal my screenplays and musicals while supporting my writing habit as a healthcare consultant.  I had a six-month MHA residency set up at PacifiCare of California, a few good connections in Hollywood that I had been fostering for a couple of years, and a belief that I could make it happen if I continued to hone my craft and remained patient.

A friend gave me a card on my departure--on the front, a child-like drawing of a simpleton wearing a goofy smile and dunce cap, carrying a flower, and stepping off of a tall cliff with ravenous wolves positioning themselves beneath for the kill.  The caption read "A Romantic steps out into the world..."

I looked at the card and smiled.  My friend knew me well.  So I said, "Yeah, but you're assuming that the guy in the picture will fall."

Yes, I am a romantic. But I like to think that my romantic notions are not unteathered from reality, but are based on a different way of seeing reality--one that is not so dependent upon conventional wisdom or even the conventions of time and space.  I am generally patient--to become a physician, you have to be well-versed in gratification deferment (even more, the developer of technical standards for health IT).  So to me, even the definitions of success and failure are supremely dependent on the time frame or on how far you pull the lens back.

The story of what happened to me in the Land of Tinsel and Lies is better told another day.  My point in sharing this snippet is to convey my willingness to look past the immediate and keep my eyes on opportunities that may seem improbable but worth the effort.

The story I do want to tell now is about how Kym and I started off as a couple and came to be a family...

On Millennium Eve, I proposed to Kym after knowing her for just six weeks.  There were several reasons why this didn't seem all that rash a decision to me at the time.  We had both been married before, so we had a sense, at least, of what we weren't looking for.  We weren't going to have children, so that was a huge set of considerations we didn't have to consider.  We were in our mid-thirties, so we were grown up enough to be reasonably formed into our long-term selves, having worked through at least a good portion of youthful angst and forethought-less actions.

We also shared one very basic feature that was so important to me that it took precedence over all others: we both--Kym especially--valued personal growth.  Kym had no illusions that she was perfect or that she had life completely figured out, but she was deeply committed to looking inside of herself with those dark, unflinching eyes, taking personal stock of what she saw and didn't like, and doing whatever it took to work it out.

In other ways, we weren't what you would call a perfect match.  I was all about music and magic; Kym, sports and success.  Even in these, we found ways to be interested in one another's worlds and interests.

The one thing that scared me more than a little was what we came to call the psychiatric joke of our relationship:  She had OCD and I had ADD, so she would make rules I could never remember.  Her obsessive-compulsive behaviors probably developed as a response to her experience of growing up in a home with alcoholic parents and getting Hodgkin's at 17.  As a result, she had a serious need to control her environment--especially related to concerns with cleanliness.  I literally had to learn entirely new ways of engaging with the world, our home and Kym in order for us to share space and bodies.

Kym's experience of dealing with my ADD was no picnic either. ADD is a real two-edged sword: it makes it possible for me to connect dots that others can't even see and to create music, catchy lyrics and magical moments; it also creates real problems that can make a mess of the simplest tasks.

When the impact of those omissions just affect me, I can build the losses and delays into the cost of doing business. One of the ways I've learned to cope with my ADD is to spin lots of plates--if I'm distracted by something else I'm supposed to be doing, the net effect is productivity, even though an occasional plate gets neglected long enough that it comes crashing to the ground. If you're just looking at the net effect--the number of plates spinning at once, it looks pretty impressive. But if you happen to be one of the less fortunate plates, it feels like a roller coaster ride of near misses at best and a shattered disaster at worst.

In our relationship, it was easy to interpret some of my forgetfulness, speak-first/process-later words and actions, and mismatched stated versus realized priorities as neglect, passive-aggressive behavior, or overt hostility. Add to this the fact that extreme emotions--from both stress and elation--tend to increase my ADD-ness, and it's not surprising that our first early relationship was strongly impacted by moments that required lots of 'splainin' on my part.

So it was clear that I was going to need to work hard to make changes to my routines and way of thinking in order to make this work. From my perspective, the investment in adjusting my own behavior to share a life with this remarkable woman seemed more than worth it.  She was very successful in her work as a financial software sales executive and had many professional and personal ambitions that meshed well with my own.  I was in the middle of an ambitious start-up project, was writing and consulting--lots of promise but not a lot of immediate gain.  So she kept the lights on while I was swinging for the fences.

Soon after our engagement, Kym moved up to be with me in Boston.  Our small Brookline apartment had everything we needed, including our dining room/office, which had three phone lines and as many computers.  We were just a block uphill from Beacon Avenue and all the bustle (and excellent dining options) of Washington Square, while enjoying the quiet of a well-heeled residential neighborhood.  We had the flexibility to make our own schedule, though our passion for working hard for our goals eventually forced us to set business hours--we declared the dining room/office closed after 6pm, otherwise we would have worked until midnight every night.

We were enjoying our lives and each other.  And while we were in no particular hurry to tie the knot, we knew it would happen eventually, so we didn't much stress about it.

It's part of the punishment of the cancer survivor: you're always waiting for the other shoe to drop, so you have to be diligent about every sign and symptom and "check the box" to be sure it's nothing to worry about.  Kym was the picture of health--she was very careful about the food she ate and how it was prepared, what supplements she took and the kinds of exercise she did.  And she listened to her body.  So when Kym started having night sweats and some other troubling symptoms a couple months after we were engaged, she promptly connected with her oncologist in Connecticut who ordered a C/T scan as a precaution.

The evening she came back from Connecticut, I remember running from our living room to the hall to greet her, doing some silly imitation of Edith Bunker welcoming Archie home.  Kym's jaw was clenched and her eyes sullen.  I can't recall her exact words, but her countenance said more than words could express.

Ever effective in the art of persuasion, Kym had managed to get the radiologist to, against protocol, give her his reading of the film rather than make her wait for it to come from her oncologist.  He said, "I'd prepare for a recurrence if I were you."

Recurrence.  That meant Hodgkin's Lymphoma, which meant chemotherapy.  Kym had already had radiation nearly 20 years before and had had an exploratory laparotomy and splenectomy.  So chemo was an almost certain fate.  And the prognosis for a recurrence was not good.

More than once, someone has told me that they could never see themselves marrying a cancer survivor--it's just too scary.  I never really thought about it that way.  Life is what it is and we don't have guarantees of anything.  How can you know that anyone you marry won't have problems or an accident.  I once met a woman whose husband died in a shark attack while swimming on their honeymoon.  Being "healthy" is no guarantee.

So we put our energies into getting as much information as we could and putting ourselves in the best position for a positive outcome.  "Be prepared for the worst; hope for the best" was something Kym liked saying a lot.   Having just finished my informatics fellowship at Harvard Medical School, I was able to quickly get Kym connected with a doctor who had literally written the book on Hodgkin's at the Dana-Farber Cancer Institute.

After two weeks and around $10,000 worth of tests, including a gallium scan, the verdict was in.  Kym didn't have cancer.  Her symptoms were probably caused by something else and her initial diagnosis was likely the result of an overzealous reading of her C/T scan that really showed nothing more than scar tissue from her prior radiation.  Had the radiologist been able to access her old films, all of the pain and cost of those age-inducing weeks could have been avoided.

We took it all in.  We had dodged a bullet, for sure, but it gave us pause.  Life is short--even a life with a longer-than-average lifespan.  We decided our best response was to say, "Let's make every day matter."  Which for us meant getting married as soon as we could pull it together.

Our wedding took place on Summer Solstice 2000.  At sunset.  On the beach.  In Kaua'i.  It was so beautiful our wedding pictures look fake--like an Olan Mills backdrop that could have been swapped out for library shelves with the pull of a cord.

And then, as we would soon learn, we got pregnant on the same beach about six hours later.

As with the year before, I wrote Kym a Christmas poem a la Seuss, that pretty much sums up in seven stanzas what took me over 1500 words of prose...

Oh, the year we have had! with its jostles and bumps
We’ve been high on the Rooftops! And down in the Dumps
Just when we thought that our future was clear
We’d turn 'round a corner and Change would appear
With his old pal Uncertainty one step behind
All the This-Way-Then-That-Ways became quite a Grind!

Just writing a poem about this year’s events
Creates quite a story that’s rather intense!
We started the year with the Best New Year’s Yet
I popped the question and you said, “You Bet!”
We partied all night at a Y2K ball
And, according to F.J., your gown beat them all!

We moved you to Boston to start a new life
And prepare for the day we’d be Husband and Wife
But our hopes for the future were dashed when we learned
That your Hodgkin’s, so long in remission, returned
For two weeks we viewed your prognosis with terror
When finally we found that the test was in error!

A lesson emerged from that troubling event
Each day must be lived to its fullest extent
We made a decision on that very day
That we should get hitched without further delay!
A few short months later we flew to Hawai’i
And, witnessed by loved ones, were wed on Kaua’i
But wait! That’s not all that occurred on that day!
For that very same night we conceived Taylor Jay!

Talk about Changes! These DINKs 'til their day’s end
Were suddenly thinking of Pampers and Playpens!
And Sippy-Cups! Strollers! Au Pairs and Papooses!
Barneys and Pokémons! Potters and Seusses!
Our image of just you and me quickly faded
We “Saabed” on that fateful day Cloe got traded
But no doubt, this all will be worth all the Fuss
The day we see Taylor’s eyes looking at us

There’s just not the room to depict all our plans
Of Start-Ups that didn’t and Möbius Bands
Of Legal Frustrations and Selling Sensations!
Of New Jobs and Old Saabs and Small Tribulations
And next year – Look Out! We’re just getting started!
We may move from Boston to places uncharted

But one thing remains – be there Change or whatever
My love for you grows every day we’re together
And one other thing remains Certain, my wife –
I still cherish the night you danced into my life

The story (at least this chapter of the story) wraps up in my next post...