Of Liberty & the Pursuit of Sleepiness (Sept 7-8, Belmont to Seattle)

It is possible that folks are wondering what the secret is to getting into a US National Park gratis. As it turns out, there is a sublime simplicity to it – you arrive around 4:20am and leave by 7:30am. No muss, no fuss, nobody at the front gate coming or going.

It was now a very, very long time again that we, fairly collectively, decided that undertaking this Journey was a good idea.   A proper idea, fitting, and one worth developing to both honor sweet Juliet and to undertake an effort to positively impact the course of childhood cancer. It has gone through truly many iterations, adaptions through the contributions of different crew, changes in the date of travel (the change of US corporate tax filing date having forced a notable rethink to an earlier departure), limitations in available modes of one-way transport, etc. This is a bit of a story unto itself, although it’s quite premature for self-reflections of ‘the making of’ sort.

Having laid down a marker of leaving at 7pm on a random post-holiday weekend Thursday, the crew was nearly fully-assembled (e.g., Richard, Matt, John, Eli, Dan and Dave) and all but one of our 80 million last-minute Amazon deliveries had arrived by 7pm. To everyone’s amazement—probably most of all Shauna’s—we left more or less on time, decked out in our pink Juju’s Journey jerseys. We headed to UCSF Benioff to pick up Phil – we were then 8 strong in three cars with identifying logo magnets proudly displaying the Juju’s Journey insignia, as well as that of the St. Baldrick’s Foundation and Deloitte.

We grabbed a quick dinner en route, talked through the next 24 hours of travel (literally) and stopped later for coffee and some pie about midnight. Somewhere around 2am, tight valleys, woods, and increasingly omnipresent forest fire fog (that’s fffog for anyone who hasn’t recently witnessed its clumping properties when cleansing with the windshield wiper), satellite radio crapped out and we threw on Act 1 of Hamilton. I’ve been a little hoarse ever since. I blame the fffog.

We finally got to the rim at Crater Lake National Park with maybe 90 good minutes for a nap before sunrise. Thankfully the fffog was not filling the caldera. The Cahill Park boys (e.g., Dave, Dan, Eli and John) cleverly walked over to the lodge and crashed out on couches. Sunrise was simply spectacular. Free coffee in the lobby after the chilly wind on the rim was needed.

Despite our exit route being a blocked road and having to make a big detour, we amazingly made it to our 12:30 appointment at cc-TDI in Beaverton for an interview with oncology researcher Dr. Charles Keller. (Given that we signed a waiver on the matter, it is astonishingly not even possible that we also exceeded the speed limit in the process of staying on schedule.) Maria and Russ also joined us at this time. The lab visit was terrific – really interesting window into the soul and workings of a multi-disciplinary, highly-collaborative, and innovative non-profit biotech effort. (See our forthcoming recording on this interview on www.jujusjourney.org for more info).

We then scooted over to Nike Headquarters where my very dear old friend and fellow UT alum, Laura Gomez, (to say nothing of fellow APO brother…yes, co-ed service fraternity) and her right-hand man, Carlos, organized a unique heptathlon on the Michael Johnson track. If you haven’t checked out this track on Nike’s open campus, it’s just really unique and cool. The race (video also forthcoming) was fun, although it had a bit of a shocker ending. Just desserts for the deserving competitors was a trip to the Nike employee store, which is always a crowd pleaser.

The remaining trek to Seattle (after a quick bite in town…pretty much our first real solid meal since the prior dinner, balancing the trade-off of taming incipient hangriness vs post-meal sleepiness) concluded after about 26 hours of travel. Sitting in the hotel at the end of this truly long leg, we considered how we had intended to kick things off in a challenging way. This has the ring of college road trip, but truth be told, we are A LOT closer to 50 than 20. (Okay, who am I kidding, most of us are closer to 50 than 40…). So it’s not the sort of thing one actually gets through quite as gracefully, no matter how many brief catnaps one manages to steal. Trying to shake off the nearly 1,000 miles of road-wear, and after a day of being reminded of so many things, it was easy to compare the long, seemingly endless day to some of the much longer episodes of chemo that Juju underwent. Near the end of the interview with Dr. Keller, he asked me about what sort of memory or characteristic of Juliet I was mostly strongly reminded of (or something like that…I don’t have the video to reference in verbatim, and we talked for a really long time…shocked = nobody). I responded that no one moment or impression could capture her…on camera, I struggled with how to simplify the wave of thoughts, feelings, memories…the love and how proud I am of her. My mind did seize on a picture that is somewhat apropos to the day – Juliet preparing to go into her last round of chemo at the Uniklinik in Frankfurt – a genuinely awful weekend at which point her body had just about had all of the chemo she could take and which also coincided with a 100F+ heat wave highly unwelcome by the denizens of a ward with no air conditioning (yes, that was really a ward ‘feature’…). In the image, brave Juju is standing in the ward hallway waiting to be admitted, carrying an extra portable fan from home (which probably weighed almost as much as her at that point), stalwartly smiling about the last bout and the chance thereafter to finally get her catheter out so she could take swimming lessons again and then go back to school where she so dearly longed to be again.

The 4-day stint (very apropos occurring over the 4th of July weekend) was just horrible for everyone. Her liberty, however brief, was truly hard won. And like every other round, Juliet somehow never complained through endless waves of nausea and in this case the oppressive, sweltering heat. In this way she was simply amazing, and it humbles me every time I stop to put in perspective the things that I complain about (possible exception being the sharp words I regularly impart upon my too frequently truculent and unresponsive laptop and cellphone). It’s hard to imagine what it would take to replicate the hardship our resilient 5-year old underwent, over and over again. I’d rather think about the special places we later got to see together and times that we shared together, rather than stumble dwelling upon the hurdles we traversed along the way. And what I would truly give to be able to share this journey–any moment thereof–with her in person rather than in spirit.

Markedly