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Off The Grid

12/9/2018

Last week Angela and I decided it was time to go off the grid, and took a nine day time-out in Puerto Vallarta. We hooked up with Tony and Gabe, had a great time, and also met a lovely couple from Vancouver Island, Debbie and Mike, who decided to relocate there. Over dinner with Debbie and Mike, it came up: Debbie asked if we have kids? Ruh roe, had the potential to be a Debbie-downer. I need to practice my elevator pitch, but I rallied after a pause, 'yes... she's forever 22, F-king awesome', and then my lemme-tell-you-about-her monologue. That prompted tears on both sides of the table, but it's all so true... I'm SO proud of Madison... so wise beyond her years full of faith, grace, and courage. Debbie and Mike have three adult sons, and signed a four month lease on an apartment in PV to get a sense of the area. Having not done their homework, their next apartment won't have 87 stairs away from a very busy street. Tony and Gabe used to live on a hill too, and it turns out that everyone who has a lot of stairs to climb all know exactly how many. Angela and I were on the third floor of our hotel and counted the steps to gauge what Debbie and Mike do: ours was 32 steps so Debbie and Mike climb the equivalent of seven stories, without an elevator, and with their laundry, groceries, etc. in their everyday lives.

Being budget conscience, we stayed at a budget hotel in the thick of PV... armed Policia at the front and rear entrances... what could go wrong? Our friends Tony and Gabe live just a short walk from there. The wiring in that neighborhood looked like we were be Beirut. Their apartment looks very unassuming from the street, but it's absolutely beautiful inside, stunning in fact: three stories and their own roof with a nice view.

The night before we left for Puerto Vallarta, I met with Josh Sommer, the founder and Executive Director of the Chordoma Foundation. Back in 2013-2014 our family was heads-down in treatment: we didn't pay much attention to the CF beyond their guidance of seeking experts who treat this rotten disease routinely... with a number of recommendations. Back in 2013 chemo was dismissed for chordoma as ineffective. Data back then was inconclusive, but chemo for Madison's ludicrously rare subtype of chordoma (1 in 20m) might be effective. It was, and there are now data driven justifications that conclude for Madison's rare subtype, it merited serious consideration. Now in 2017-2018, it's become more of a norm, and a paper was recently published that includes data from Madi's case. I co-moderate a chordoma support group, over 2,200 members globally. A mother of a 5 y/o boy just joined us: treatment to date, traditional chemo. While strong regimes are brutal, it's been effective for him... no surgery, no radiation to-date. There are numerous clinical trials specific to chordoma, one of which is injecting chemotherapy and other agents directly in and around a chordoma tumor... with success! My point with this paragraph: After treatment ended in 2014, we didn't pay much attention to the CF. In early 2015 there was a Patient Conference at USC, so it was easy for Madison, Moms and me to attend. Only then did we truly grasp the significance of the Foundation: amazing progress driving global collaboration, and there's increased momentum every year. This picture is of doctors, scientists, and researchers at the 2018 workshop... 140 of them from 70 institutions and from 10 countries. Absolutely remarkable!

Last Christmas season Madison wanted to decorate the Christmas tree, so we did... I'd written about that at this link. The elephant in the room eventually demanded attention, and we sat down and talked about it... every unfortunate aspect. I'd also written about reevaluating rituals, which we did. We choked down tears decorating the tree, ultimately what Madison wanted for us was a 'normal' Christmas, knowing full well that this would be her last. There was a candlelight vigil tonight at 7pm local time(s) across the planet: we lit candles for our lost loved ones... it's a thing on the second Sunday of December. Pictured below: normally put our Christmas tree in that corner, but things are not normal... not for any of us who love Madison. While she might screech from the heavens 'move-on', she would concede that we need to be us too. So this year, I put up happy lights on the outside of the house as normal, but inside... void of any Christmas spirit. Like me... turns out, it's a new and temporary norm, noting this year the elephants sitting in the bottom left corner where the tree has been in past years.

Mind you, I'm far from feeling dead inside... honest, just not feeling Christmas-y. When we gather for a family dinner in December, it'll likely be very close to Christmas day but just like last year, it'll be a bucket of KFC or something simple.

Pictures at the bottom of this thread, the budget hotel was quite nice for the pricepoint, and in a great location. It was a very relaxing nine days being unplugged, and they upgraded us to full ocean front for only $10 a day. Yes, that's a bucket screwed to the wall and yes, it's sprinkler pipe with an sprinkler on/off valve.

While we comply with the rules and guidelines, but one has to be careful not to tar oneself. It's odd for me to pull toilet paper north of boarder.

Yep, that's a keeper.

After nine days being off the grid, it was time to come home. About 30 minutes after we took off (about an hour south of San Diego), a woman in the row in front of us across the isle was having trouble breathing and couldn't speak. The flight attendants were amazing and recognized it was serious enough to request that any doctor or nurse on the flight please press the 'attention' button. Thankfully there were three. The emergency medical kit was placed on the seat next to me. It was impressive with a wide assortment of meds... probably most of what every ER doctor might request. Odds are, there will be a nurse, doctor, or EMT on a plane. It was serious enough for us to divert the flight and land early to get this woman to a hospital. Rather than continuing north, we were diverted south and landed in Cabo. I suspect FAA rules mandate the closest international trauma center, versus a more modern facility that's a little farther. Cabo Paramedics boarded the plane and took the woman and her husband off. The captain announced that we'll need to refuel, get another oxygen bottle, and we'd be off. Then it went sideways.

Long story short, our airplane wasn't at a gate... just sitting off to the side. My gut told me three things: I suspect the woman had a stroke and hopefully she's going to be okay. 2, the US flight crew might not be allowed off the plane. All being Los Angeles based with two LAX to PVR round trips scheduled, would they need to go through customs in Cabo? Rumor was that time of the night, Customs in Cabo was closed. 3, I was hungry: maybe now I can get my airline bag with the 14 peanuts.

We sat there held captive for over four hours and I'm fairly certain Delta broke some passengers rights laws, allegedly awaiting an oxygen tank. At the 4 hour mark being held captive, they brought aboard 'meals'. I kid you not, we each got 1/4th of a homemade sandwich. I'm 100% serious, this was Delta's attempt and providing 'meals'. Objects in this picture are smaller than they appear.

At the 4 hour and 10 minute mark, the captain announced that they have received approval to use an Aero-Mexico oxygen tank, and we'd be departing shortly. What Delta should have done was the simply the right thing, but they blew it on so many levels. On the two-more hours flight from Cabo to LA, Delta actually had the audacity to charge passengers for snack boxes. A father, mother, with a young crabby child asked for a snack box. A flight attendant told them he'd have to charge them, and (unasked-for), insulted dad by saying he'd be charged for alcohol too. The Flight Attendants then went limp, sitting in the back row fidgeting on their phones. No coffee brewing, they didn't even look up. I stood in the Galley hoping to smell coffee. Granted, some people were really upset, but really?! Wimps! Delta even continued to charge passengers to use their onboard WiFi so people can send email updates or fiddle on social media or the internet... like two of the flight attendants lounging in the rear seats.

Angela and I were lucky, counted our blessings. We didn't miss a flight out of LA heading to Australia like the young woman across the Isle? (Aussie's tend to end sentences which to me, sound like a question) In the wee hours of the morning, LAX did open Customs for us, or was that BS too... that customs is closed in LA?

As far as I'm concerned, the airline owes the 100+ people on the flight three hours of our lives back for holding us hostage beyond tending to the ill passenger, refueling, and restocking an oxygen tank. There were other planes going in and out out Cabo, so they should have allowed deboard. Delta has our names and address, so I'll absolutely confident they'll be sending all of us captives a flight voucher. Sure... without even asking?

The pictures of the bathroom above was at a local restaurant. We had a great meal for a low price, I love PV! The picture below was from our room. For a mere ten extra dollars per day, we had a full ocean view, wrap-around balcony with dual sliding glass doors with a nice ocean breeze.

All things considered, it was a wonderful disconnect. It's becoming less sucky to -not- shop for Madison while Angela and I vacation. To Madi's point, I still find it cathartic to write.

Quick Christmas Story

Off The Grid

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