The Truly Unusual Little Episode in which Hoda Kotb, Cyndi Lauper, and Sara Bareilles Unwittingly Conspired to Save my Life

Sorry about the convoluted nature of this post…but there’s a payoff when threads tie together that challenges some of the most tightly written Seinfeld episodes…promise!

Cyndi

Anybody who really knows me knows that I have been a huge Cyndi Lauper fan since her emergence in the early days of MTV. Yes, I did my share of head-banging with Def Leppard and Quiet Riot back in those days, new-waving with Duran Duran, arena-rocking with Journey, et. al. But this 15-year old boy had a ridiculously oversized “She’s So Unusual” poster on his bedroom wall and played that LP along with Cyndi’s previous rockabilly band outing “Blue Angel” until, as they used to say, the needle wore out the records. There was something special about her voice, talent, and quirky passion that appealed to me much more than the otherwise often banal music landscape of the early 80s. I was lucky enough to see her in concert on the original “Fun Tour” at Cleveland’s Blossom Music Center in 1984 and to have recorded the “Live at the Houston Summit” (of all foreshadowy places) concert off the radio that year, a cassette tape I still have. I've always kept up with her discography through multiple format changes over the decades, LPs to CDs to digital. “True Colors” came out in college, “A Night To Remember” in medical school, "Hat Full of Stars" alternating with "Nevermind" as I moved from Cleveland to Galveston in '93; each subsequent album takes me to a specific time and place. 

In the summer of 2013, barely a month before the seizure that started The Sickness, Charlotte and I saw Cyndi live in Houston at the House of Blues on the “She’s So Unusual” 30th Anniversary Tour. Nothing like seeing a true talent live on stage to create a 2nd Generation fan for life. We both loved the show and I was thrilled to share this time with my daughter.

The Rainbow Connection

Now as a pediatrician in Galveston, Texas, I have worked closely with our local children’s oncology camp, The Rainbow Connection, both as a member of the Board of Directors doing year-round fundraising to keep the organization going, as well as serving as the Camp Physician every summer for the past 10 years so the kids can just be kids and enjoy camp, forgetting about their diagnosis and illness for a week…but with a doctor on standby “just in case.” Another part of my involvement in The Rainbow Connection is maintaining the website, Facebook page, and planning some of the multimedia used at camp each year. I’m always listening for the latest and greatest inspirational tune to add to our extensive camp soundtrack that gets the kids pumped up and encouraged to be brave and try new things.

Sara

Sara Bareilles hit my radar so solidly into the digital age of music, that like many I owned her first hit single around 2007, the infectious “Love Song,” as an iTunes/Starbuck’s Free Song of the Week. How amusing when returning to iTunes to buy the whole album to find it titled “Little Voice.” Like Cyndi’s, Sara's is hardly a “little” voice and similarly captured my attention with her passion and talent. iTunes has certainly been Sara's friend, seeming to always push any of her new material to the front page, where with such simplicity I’ve clicked each of her subsequent releases into my collection, no needle on the record necessary.

The Sickness

Of course this entire series of blog posts or facebook notes was inspired by my own cancer diagnosis in August 2013. I had surgery and treatment for a brain tumor in September 2013, and had been recovering wonderfully in every way while under very close medical surveillance for complications or recurrence. Last spring, anticipating attending the upcoming 2014 Rainbow Connection 30^th Anniversary Camp not just as the Camp Physician, but also as a patient myself, who needed and wanted to be able to forget about my diagnosis and “just be a kid” for a week, Sara’s 2013 song “Brave” was, for me, clearly the Camp Song of the Year. I’d already been playing this song on endless loop as motivation for myself…and I knew it had to be the song at the top of the rock wall for the kids to show us how big their brave is as they leapt down the zip line. Indeed, the song became part of Rainbow Connection musical canon and also punctuated the camp's 30th Birthday Week-in-Review Slide Show.

Unfortunately the sickness continued, requiring an additional surgery just a month after camp, in August 2014. For the second time, I had been recovering from brain surgery quickly and fully, until very abruptly on a mid-September day I became critically ill with an infection-related complication and was hospitalized in the ICU at MD Anderson in Houston. I recall virtually nothing about those first few days, as my brain-infected, sedation-infused mind operated wholly outside normal boundaries. I’ve been told I was confused, combative, at times seeming not to even recognize my closest family and friends who had dropped everything and mobilized to visit me from all over the country. This was some serious shit and I was drowning in it quickly. Nothing was reaching in and I was barely reaching out. Then…

The Song ("Truly Brave")

In honor of National Childhood Cancer Awareness Month (September), Hoda Kotb of the Today Show, a cancer survivor herself, had created an amazing music video with some kids from Children's Hospital of Philadelphia and some very talented musical artists. While visiting me in the hospital, my sister clicked a link posted by our Camp Director on the Rainbow Connection facebook page to the Today Show video and it started playing in my room. Somewhere, from the darkest depths of my illness, during its deepest inescapable, surreal cave of disoriented hypnagogic state, something that should have made virtually no sense whatsoever made perfect sense at just the perfect time, to just the exact person who could understand and need it most of all. Me.

An IV dripping…a hospital monitor beeping…Cyndi singing “True Colors”…no wait, that’s Sara singing “Brave”….kids giggling at the top of the zip line showing how big their brave is…there was nothing that could have spoken louder or clearer to me at that moment. I needed to be truly brave. I needed to wake up. Get better. I’ve got kids to raise. I’ve got a wife to love. I’ve got patients to care for. I’ve got camp next year. I’ve got stuff to do. I am not finished. I am smiling ear to ear and crying in my obtunded unresponsive sleep. 

WAKE UP!!!

YouTube link if video not playing inline above:

https://www.youtube.com/watch?v=t9fMNNsdPjU

So I did, and here I am.

(Almost) One Orbit

We are fascinating creatures. We possess an inherent and intuitive desire to count, organize, and sequence virtually everything. Before humans even understood exactly how or why the Earth orbits the sun, the planet's annual trip around its central star became the benchmark measurement for all significant events of history, as well as those of each individual lifetime.

That the 365 rotations of the Earth on its axis correlates with a single trip around the sun is arbitrary and unique to this particular rock circling this particular ball of fire. Yet the "year," subdivided into "months" (patterned on the Earth's own orbiting rock), further divided into "days" by the illusory rising and setting of the sun, is how we measure, collate, and define our lives, accomplishments, and memories. That a person remained alive, married, employed, or remembered for yet another trip around the sun, is routinely celebrated. This is especially true for a first anniversary, and also for those at 5 or 10 year intervals. This is an arbitrary cultural manifestation of biologic natural selection favoring our ancestors who more frequently survived their primitive environments with 5 digits on each hand, and eventually developed a base10 numerical system.



The first date many of us learn and commit to instant recall memory is our own birthday. For me, November 18, 1967. Kids can reflexively report how old they are and instantly flash the right number of fingers. Kindergarteners finally put their naturally selected thumbs to good use, proudly spreading all 5 digits in response to "So how old are you?" At some point, maybe late 20s or mid 30s, the birth year suddenly becomes very important as a pause for quick calculation becomes necessary to determine age. Hmmm...it's 2014, I was born in '67...guess I'll be...uuhhhh...47 in November so I must be 46. Yeah, I'm 46. Really? I'm gonna be 47 this year? Sheesh.

Life progresses and other important dates are impressed upon memory, like the birthdays of parents and siblings (cake!!), and important recurring holidays like Valentine's Day (candy!! February 14th!), Halloween (candy!! October 31!), and Easter (candy!! um..when is Easter, exactly?). Only the naiveté of a child could foster contemplation of how cool it must have been for Jesus to have a birthday (December 25, 0000) on Christmas Day. Double presents!

The dates of historic events that occurred before we were born become part of our shared experience and could sometimes be contextualized by parents or grandparents. Certain dates have always carried great weight and gravitas as far back as I can remember. July 4, 1776...December 7, 1941...November 22, 1963...May 4, 1970 (my Dad was a student at Kent State and we were all there). I lived through many, many April 19ths before I knew that would be my wife's birthday. August 4th came and went a couple dozen times before it became my wedding day on August 4, 1995, our 1st anniversary in 1996, and will be our 20th in 2015. Those dates are now enshrined in my personal Calendar Date Hall of Fame (and damn well better not be forgotten!). The births of kids on September 2, 1997; June 19, 2000; and January 9, 2002 are among the most special of dates. I succeeded in flawlessly rattling them off rapid-fire in a pre-op urology clinic interview, an amusing quiz to make certain that I was indeed satisfied with the kids I already had and was ready for a vasectomy. 

I can distinctly recall how September 11th, 2001 changed from a simple quiet morning in the ER, where I had already written that meaningless date on half-a-dozen charts, to a day that everybody knew, even as it had barely unfolded, would be "one of those dates." September 13th, 2008 drew a line in the sand that everybody here in Galveston knows distinctly marks the "pre-Ike" and "post-Ike" periods of our lives. It was with wistful sadness and moist-eyed joy that recent commemorations reminded me that my entire life and generation are encompassed within and profoundly influenced by the 50 year-long shadow of JFK in Dallas (November 22, 1963) and the Beatles on Ed Sullivan (February 9, 1964).

As you grow older, you don't expect or hope to add more landmark dates to the list. Maybe a grandchild's birthday (in many, many, MANY years!!!). One year ago, at age 45 (um wait I was born in '67...about to make reference to summer of 2013...so yeah, 45) I added a new one: The day-I-had-a-seizure-while-giving-a-lecture-to-the-medical-students-on-their-first-day-of-school and got-diagnosed-with-a-brain-tumor. My own personal Pearl Harbor Day. I'll always remember exactly where I was and exactly what I was doing when that happened. I hope the events of that day not only made for a unique and memorable first-day-of-medical-school story for that auditorium full of future physicians, but impressed upon them the way an ordinary August 26th can abruptly, and with only subtle warning, become August 26th, 2013, a date dramatically altering a person's health, hopes, and identity from that day forward...or possibly even that final bookend date to be chiseled on their tombstone. 

Of course I'll continue to count my total trips around the sun from '67. Almost as meaningful is the nearly complete orbit I've made since August 26, 2013 and those yet to come (the math is soooooo much easier). I've now got an additional line in the sand separating "pre-tumor" from "post-tumor" life. Counting the years since a cancer diagnosis may seem inspiring yet still a bit ghoulish. In a field of medicine where doctors tally their treatment successes in 5-year survival times, I'm fortunate to have taken my first steps. 

Almost a year ago, I went to work on August 26th blissfully unaware of the 3.5cm time bomb ticking in my right temporal lobe, which was removed on September 25, 2013. This coming August 26th I'll already be recovered from a second procedure to remove a 1cm recurrence discovered just this week. I'm moving on to the terrible twos with hopeful plans to make it to kindergarten and beyond. 

Put away the chisel for now.

- kpb 8/12/14
#negu

How Are You Doing?

This is probably the most Frequently Asked Question to which most people in most circumstances don’t truly care to hear the real answer. “How Are You Doing?” is often the slurred appendage to “Hey,” as in “heyhowurdoon?” Often, “How Are You Doing?” is more a friendly informal salutation than a genuine question. All anyone really expects in return is a “fine” as we pass quickly in the supermarket or arrive to a meeting. The last thing anyone actually wants to hear is the long drawn out story of How You Are Doing. For the past several months, I have commonly been the recipient of a heretofore unfamiliar variation on the “How Are You Doing?” question: the one where the questioner really does want to know How I Am Doing.

Yes, I still get the everyday obligatory “heyhowurdoon?” and the dude-ified abbreviation “sup?” with attendant head bob. Frequently I’m now approached with “Heyyyyy, How Are YOU Doing?” with the extended cheery “ay” in “hey,” clearly enunciated capitalized words with the vocal emphasis on the all-caps and audibly italicized “YOU,” ending with the full-on, g-included, rare-in-Texas, two-syllable version of “Doing?” There’s often a simultaneous tip of the head, scrunch of the brow, and pat on my shoulder or hand. In this format, the question is sweetly sincere, but demands more than just a cursory “fine” from me. Kind people genuinely want to know How I Am Doing, and the truth is “It’s complicated.” Caught at any given moment, however, I am indeed “fine.”

Here’s How I Am Doing:

Radiation therapy has left me with a conductive hearing loss in my right ear. I can’t hear your voice over the world’s rumbling ambient noise unless you are to my left. My own voice, chewing, swallowing, stomach grumbling, as well as louder environmental noises bounce around and echo in my head incessantly. The space between my ears can easily become a racquetball court of clatter. It occasionally mimics some of the scary “am I the only one hearing that?” phenomenon that started this whole thing last August. Of course there are worse things than being deaf in one ear, and I'm grateful I've had no real pain, nausea, or other debilitating physical symptoms. This deafness and accompanying auditory weirdness would not be nearly as unsettling if it were not a 24/7 proxy for the tumor, a constant reminder of why I have the doggone deafness in the first place. Just when I have almost forgotten about all this for one hot second, I’m immediately reminded by the ocean in my right ear, even when alone in a silent room.

I’m tired. All the time. I’m adjusting to this as a “new normal” and hoping it goes away. My oncologist tells me this can be a lingering effect of radiation that can last for months, sometimes “forever.” It’s been months, but I’m still tired. I wake up in the morning bright eyed and bushy-tailed, but the sack of fatigue hits me by mid-morning like a paint can in the face of a Home Alone burglar. By the time I get home from work, I’m often ready to crash for the night. If we run around and do some evening stuff I can keep going, but 5 minutes on the couch or the La-Z-Boy and I’m out. I purposely rest all afternoon on the days I have an evening clinic shift and I do fine. Hey look, I’ve had a malignant brain tumor. I've had surgery. I’ve had radiation, I’m on several medications. I work more than a full-time job and have 3 kids. I deserve to be tired. I feel that if I’m falling asleep that readily that my body must need the rest. But I don’t want to sleep my life away at this point.

I’ve had a series of MRIs every 2 months since surgery in September that progressed from “expected post-surgical inflammation/changes” to “radiation induced changes around the surgical cavity” to “concerning area for recurrence near the surgical site” to “previously noted concerning area has decreased, but warrants continued follow-up.” Blood work and a week of oral chemotherapy every month has barely fazed me, but lately it’s been fazing my platelets. Please don’t pat my shoulder or hand too hard when you ask How I Am Doing. Living blood test to blood test, MRI to MRI, appointment to appointment is stressful. The 1-2 day wait between the MRI and the neuro-oncology appointment where I get the results is the worst of all. A good friend has dubbed this unique brand of stress “scanxiety.”

In a weird sort of way, I enjoy my MDA appointments. There's a comforting unspoken solidarity in the elevator as it rises to the 7th floor full of us "head cases." Nobody asks How I Am Doing. Everybody smiles, nods, and knows "It's complicated." Sometimes I see this young lady sporting a scar matching mine being pushed in a wheelchair with a portable suction machine in her lap and a bag of liquid nutrition hanging from the pole. I smile at her while I cry a little inside; I can walk, swallow, and eat perfectly well. Like everyone, including my “previous” self, I get a headache now and then, slur a word here and there, become frustrated by simple problems, occasionally get a little off-balance when I stand up too fast, or get a song stuck in my head. Now all these little dopey everyday occurrences carry so much extra weight and meaning. Every. Single.Time.

I worry about what’s going to happen. Waiting for the next shoe to drop. Then I worry about how much I’m worrying about it. I can sometimes get thrown into a spiral of outright shaky panic over making the simplest decision (“What do you want for dinner?”). Yet when in my comfort zone of motor memory tasks, like solving a Rubik’s cube in a minute or (believe it or not) being a pediatrician, I fall right into a steady rhythm and don’t miss a beat. Again it’s a new normal. I must constantly remain self-aware and reflective about How I Am Doing. I have a trustworthy team of friends and co-workers to keep me in check, and my always supportive family to talk me off the ledge when I can’t decide between 3-bean soup or spaghetti.

Speaking of dinner, my appetite has changed considerably. I have lost about 20-25 pounds through all this, which I had been wanting to lose for years. Be careful what you wish for. I’m eating less, eating healthier, and trying to stay a little more active. These are all good things. Still it’s uncomfortable when people unfamiliar or even vaguely familiar with my situation say “Hey howurudoon? You look great! You’re so svelte. Have you been losing weight?” Cue Debbie Downer awkward brass wah-wah noise. “Yeah gee thanks I’ve lost 20 pounds! This MDA diet is the best ever!!”

So when you ask me How I Am Doing, please remember that I may not have heard you, I’m very tired, I may be getting my latest blood or MRI results tomorrow, I’m worried, I don’t know what I want for dinner, but I'm happy these pants fit again. “It’s complicated.”

I really do appreciate you asking. I know you care. Thank you.

-kpb 6/17/14