Saturday, August 31, 2013

The Red-Headed Stepchild Country-Bumpkin Hospital

I first came to Galveston in 1993, looking to live and learn in an entirely different part of the country, and at an entirely different kind of hospital than where I had gone to medical school. I was in the north, I thought it was time to go south. I was at a huge hospital with a huge name and huge reputation, I wanted to try someplace smaller, more intimate and congenial. When I told the pediatric program director at Rainbow Babies & Children's Hospital that I was ranking UTMB Galveston #1, he furrowed his brow and said with condescension, "Why would you want to go to a place like that when you could so easily stay here?" I had many reasons delineated, but my answer to him in that moment was:

"I really like the people I met there."

It was clear from the condition of the facility that UTMB, a "state hospital," was not ripe with resources; the parking garage back home at RB&C was decorated cuter than the wards of the children's hospital at UTMB. I understood that this facility was in large part dedicated to the care of patients who could not receive or afford care anywhere else. I could see that the nature of such a place attracted doctors and nurses who believed in providing this kind of care, a self-fulfilling roster of caregivers who chose to "go to a place like that" precisely because it was "a place like that."

Everybody I met on my interview day was genuine, warm, welcoming, sincerely dedicated to their mission, and also frankly honest about some of the challenges of working at a "state hospital." But none of those limitations ever kept any of them from putting forth their very best efforts with every single patient...99% of which consisted of talking, listening, touching, and holding hands through recovery and sometimes all the way through tragic death.

One of the residents I went to lunch with said something that has always stuck with me: "Even as a resident here it's like being a small town doc. You'll see kids in your clinic, then you'll see them out at the post office and grocery store and they run up and hug you because you are their doctor."

I never made a better decision in my life. Clearly I was meant to come here...20 years on I have cared for many kids who needed somebody like me at an institution like UTMB. They do come up to hug me in the grocery store....and now many of those kids are grown with kids of their own. The love of my life was here in Galveston waiting for me to arrive, and we now have three wonderful children who have gone to preschool, played baseball, and marched in the band with those same kids I've cared for in the hospital and clinic. I cannot distinctly separate my life as a husband and father from my identity as a "small town doc," nor do I want to. This is the life I chose when I constructed my rank list back in 1993.

On Thursday I met with my neurosurgical counterpart at UTMB, a doctor I've known in passing for 20 years and shared a few patients with in consultation. He chuckled and referred to UTMB as the "red headed stepchild country bumpkin hospital." We don't have an intraoperative MRI at UTMB, maybe in 2 or 3 years but I can't wait 2 or 3 years. "There's nothing good about this, you know" he tells me bluntly. The first step is to get that whole sausage out of there and slice and dice it in pathology to better define the prognosis and next steps of treatment. "I know you're a doctor, you're one of us, all that...but when we're in that OR you're just a guy with a glioma I need to resect. And I've done that a million times on everybody from prisoners to bank presidents. And I'll do it exactly the same for you to the best of my ability. I can do this."

What's in it for me staying here? I have his phone number already in my phone. I may even try to wrap my arms around his substantial frame in the grocery store should I see him there. Everybody I know and love who is bustling around the hospital can pop in to see me for a few minutes or all afternoon as I awaken and recover, or as I wither and die. My wife and kids can spend as much time with me as I need or they want, and can come on a moment's notice without feeling rushed or as if they are inconveniencing somebody with yet another trip back and forth to Houston, all the while missing out on their own important milestones in middle school and high school.

Galveston and UTMB are my home and they are inexorably entangled. I need to believe in my home and my colleagues, as countless families have believed in me. What I have is not likely curable, but rather controllable for a period of time. I think that process, whatever the duration or final outcome, needs to be filled with the support and presence of the family and friends I have made here for the past 20 years, not all alone in a gold-plated marble-walled palace.

We have an appointment at MDA at 7:30 am on Tuesday. Eager to see what they have to say.

-kpb 8/31/13

Wednesday, August 28, 2013

A Man of Your Age

I recall beginning to emit a low-pitched guttural sound and then falling forward. Then...

nothing.
this is what happens when you die.
nothing.

The next thing I remember I was awakening, clearly being pulled out of the CT scanner, and CiCi, a nurse I knew from my days in the ER, was there telling me "Dr. Bly, you're in the ER CT scanner, it looks like you've had a stroke." A stroke? A Man of My Age? There was some conversation going on behind me, or maybe to me, or perhaps about me, regarding whether I was a candidate for TPA or not. "We need an MRI!" Metal needs to come off...my Rainbow Connection camp bracelets, my watch, my wedding ring are handed off to Amy...how is Amy here? It was Amy that pointed out my belt buckle and fasteners on my pants, and she got my pants off under a sheet in the hallway on the way to MRI. So that was cool that if my pants had to come off, the task was given over to my wife. And yeah I had peed a little bit :/

Then suddenly a bustle of activity and discussion about going off to MRI, MRI 1 or MRI 2, all the while I'm thinking "Wait you can't order an MRI in the ER." In and out of sleep and confusion I'm then in the MRI, somebody puts in earplugs, I remember doing that for patients I monitored in the MRI. My mystery music and DJ return, but I still can't identify that damn looping song!!!

MRI is boring. And terribly long. My legs are uncomfortable. I was in there for an eternity, staring at the faceplate, listening to that endless looping song.

Finally I get to a room where some neurology resident who goes to middle school with my son tells me my scans show that I have a mass, most likely a low grade glioma, since that is very common in a Man of My Age. "Glioma" is not an especially joyful word on the pediatrics side of the world. Apparently surgical resection is typically completely curative for a low grade glioma in a Man of My Age. They recommend going to MD Anderson in Houston, no rush but pretty soon. Um OK.




They're going to start me on some medicine to get my "seizures" under control. Oh, I had a seizure? Oh yes, a full-blown grand mal seizure right there in front of the first year medical school class on their first day of school. How awesome is that? Luckily there were a couple of doctors present who called 911(*) but meanwhile found me blue with a thready and then no pulse and administered CPR...so that's why my left ribs are hurting so bad. Good compressions guys!!!

Pretty uneventful night but challenging to sleep with an IV in each arm, broken/bruised left ribs, telemetry unit in my right pocket, and TED hose on both legs. Basically sleep without moving anything. In the morning the music was back and finally I knew the song!!! AM Radio by Everclear!! DJ and all!! But louder and more distracting than ever....what a feeling of relief to identify that song. I'm not crazy after all!!! Oh but I have a brain tumor. Meh.


The neurologists say the persistent music indicates I'm still having seizures so they add IV Dilantin. That mofo burns like crazy when it goes in my arm, but it shut off my internal radio immediately. Hmmm. Brain chemistry at work. Kind of takes the magic out of everything you know? Pretty soon I'm the happiest drunk on the planet with uncorrectable double vision...until somebody tells me "close one eye." Oh yeah, good idea. This is exactly like being as drunk as you can be while still conscious, but without all the bad effects. And no more Everclear. I could live like this.

Want to listen to my lecture and the aftermath? We were actually recording the lecture on my laptop for the Tegrity class management system, so have a few chuckles at my malapropisms then reel in horror at all the chaos starting at about 38:30...

Later I found out Amy received a text from one of the students who knows her since she was a kid and Amy took photos at her quinceanera, that 911 was being called for me (*edit 9/6/13: found out today it was actually one of the students, not one of the doctors, who called 911). Amy was already sitting outside waiting for me when the ambulances pulled up. Yet another reason why I love Galveston :)

-kpb 8/28/13

You Can Hear the Music

So after a perfectly normal busy day in urgent care Sunday, I got in my car and even before I hooked up my iPhone to play music, I could already hear music playing. I fiddled with the radio volume and double checked that my phone was indeed not plugged into the aux jack, did that head cocked eyes rolled brow scrunched thing, listening intently. Sure enough, a familiar tune (or maybe two) was playing, with kind of a DJ talking over it, but I couldn't quite put my finger on what song it was. While I couldn't exactly sing along, I could anticipate every beat of the song and syllable from the DJ. It was somewhere between "remembering" it and "hearing" it, and I couldn't make it stop no matter what I did. It was at once as if it was blaring full blast in both ears, but also as if I was trying to identify this song playing on a transistor radio from down the hall.

Tried thinking of another song ("Sweet Caroline" for some reason) and also started playing music through my iPhone. Now I had 3 songs playing simultaneously, melding into a pretty wicked mash-up, but eventually the mystery tune pushed itself to the front, while "Sweet Caroline" became drowned out in the background. The remainder of the drive, familiar songs I know well shuffled up on the iPhone one by one and they all sounded weird, like a new producer had remixed them or dug some previously unreleased versions out of the vault. Piano riffs I had never noticed were pushed to the front of the mix, while the vocal tracks were barely audible in some cases. Reminded me of being high, though it's been 30+ years since I've done that. I seriously wondered if I'd been drugged or if the salad I had for dinner was loaded with some potent MSG or something.

When I arrived home I told Amy about the mystery song and asked her to listen to "Don't Come Around Here No More" by Tom Petty - "does that sound strange to you?" She didn't know, not a big Tom Petty fan. Who is this woman I married? Went to bed without further incident. In the morning I went to 8am departmental morning report and felt perfectly fine. Returned home to work on a powerpoint (well actually a Keynote for everyone who expects me to be an Apple evangelist) for a 1pm introductory lecture to the 1st year med students on their 1st day of school. At about noon or so I heard the music again...could tell it was the same super recognizable and familiar song (or was it songs?), but still couldn't identify it. Kept playing that same ~30sec snippet over and over, louder and louder from inside my head. I actually yelled at it, "STOP IT!!" and amusingly thought how I was one step away from getting in an argument with the musical voice in my head. Told Amy, "I'm hearing that song and DJ again." Also told her she looked like she was in HD, or maybe a cartoon. I don't really know what that means. She told me I didn't look right and made me promise I'd call one of my doctor friends once my lecture was over, and that she was going to drive me to campus for my lecture. She planned to come pick me up between 1:45 and 2pm.

Upon arrival to the lecture hall, I texted a couple of my trusted colleagues that I was having some weird neuro symptoms and wanted to talk to them after my lecture was over at 2pm. Got immediate replies to call them whenever convenient, and fully expected them to tell me I was crazy lol. The lecture hall filled with eager 1st year medical students on their 1st day of medical school, and I began my lecture. Immediately I found myself tripping over, searching for, and mispronouncing words. I even made a comment something like, "Sorry, my brain isn't working right today, hopefully I can make it through this lecture before I have a complete stroke..." One of my course coordinators said "Yeah, you don't sound like yourself" and my course co-director approached the podium and said "Hey buddy, you want me to take over for you?"

I registered his question but could not respond, and just kept on talking...
-kpb 8/28/13