Posts by autojim

Engineer for hire (https://jcriderconsulting.com). Car Guy. Waver of flags at race cars. Pretend race car driver. Nerd. Sea Monkey.

The Time I Went Back To Boat, Part V: JoCo Cruise and the Order of the Phoenix

Wow. Been a little bit since The Time I Went Back To Boat, Part IV: Mockingjay, Part II. I’ve been a little busy, and pushing myself a little in my ongoing quest to get the stamina built back up to “able to work full time”, and it’s, well, tiring, leaving me without sufficient brain spoons (“Ahh. Dessert. Chilled monkey brains!”) to write gooder enough to do a post.

Making myself do it today to get the actual trip report finished so I can get on with other stuff that should also be talked about.

We’d left off with us back on shore, landed at one of the JoCoTels to hang out with friends (the traditional JoCo Cruise afterglow) until our flight, and we’d regained connectivity to The Interwebs (the tubes that run out to sea are very expensive Space Tubes and not only are they very expensive, they’re very small tubes because they have to go to SPAAAAAACE and back and be flexible ’cause the ships move around), whereupon I discovered that our nonstop flight home that evening had been cancelled due to the grounding of all Boeing 737MAX aircraft.

(Note here: If the people at Boeing, and I’m including the management that signed off on doing it this way, and at the FAA who also signed off on doing it this way, aren’t criminally charged regarding the deaths their fuckup caused, they should at the very least be drummed out of the engineering and engineering management business so hard they might as well move to Key West and open up a T-shirt shop two blocks away from Duval Street on an alley that no one sober ever goes down.)

The email notification of this was sent on Thursday. Of course. The day we went back to sea and weren’t connected as we were in San Juan (which, being a US Territory, has native cell phone coverage. No roaming!). And we got a second email saying we’d been automagically rebooked on a flight leaving Ft. Lauderdale at 6:00am and connecting (tightly) through Atlanta… that’s 6:00am on Tuesday, 2-1/2 days after we were supposed to fly out.

Did I mention we were in Ft. Lauderdale? And it was Spring Break? And because of those two key facts, there weren’t any non-shithole hotel rooms to be found? At all? I’m pretty sure the shithole hotel rooms were pretty scarce, too.

So I got on the phone with Southwest. Not their fault that Boeing fucked up, but they’re the ones who needed to reschedule us. Naturally, there was a wait, so they used their “we’ll call you back when it’s your turn” service and started researching hotels and also one-way rental car options while I waited for the call back. When they called:

“I see you’ve been rebooked on a flight Tuesday morning….”
“Yes. Are you going to find us a hotel to stay in for 3 nights? In Ft. Lauderdale? During Spring Break? Rent us a car?”
“There are 173 people in a similar situation…”
“Yes. We’re two of them. Two of our friends are two more of them. None of us have hotel rooms reserved because we’d been planning on flying out this evening.”
“Let me see if I can get you out sooner…”
“Good idea.”
::clicking of keys::
“Okay, I can get you on a flight out of West Palm Beach on Monday morning, connecting through [Memphis, Nashville, Orlando, somewhere. I stopped paying attention after “Monday morning”]…”
“Are you going to get us a hotel for 2 nights? And cover the $200 cab ride to West Palm from here?”
“Sir, there are 173 people who were booked on the flight that was cancelled and we can’t…”
“Right. Well, should’ve thought of that before cancelling a full flight out of a spring break destination during spring break, yes? Anything tomorrow [Sunday]? Both of us are due back at work on Monday morning. We’d booked Saturday so we’d have a chance to get home and be ready to go by Monday.”
“No, everything on Sunday is already full.”
“Right. Because spring break.”
“Ok. So let’s just cancel this. I’m going to rent a car and drive 1300 miles and still get home before you guys can get us there.”

Which is how I wound up with nearly $600 in credit with Southwest (split between Kim and me). We’ll likely use it this summer.

I also hadn’t planned on testing my long road trip chops quite so soon. I hadn’t done one since Before Diagnosis, but no time like the present, I guess, plus I was still rather buoyed by how well Boat had gone and was feeling just-drank-Egg-Shen’s-potion confident. Folks, that’s a good feeling. And I still had a lot of spare poop bags. Just in case.

Back to the National Car Rental site, because I have an Emerald Club membership with them, and for reasons known only to them, they still think I work for Former Employer and get the contract rate. I’ve tried to tell them I don’t anymore, but they persist in saying I still do, so whatevers… Plug in the pick-up and return locations, dates, times, and the default is a “mid-size” Hyundai Elantra (or equivalent). How a C-category compact car classifies as “mid-size” is left as an exercise for the reader. Regardless, for that kind of a drive, an Elantra is a hair shirt. Not quite as itchy of one as a Nissan Versa, but close. Hm, what other categories are available? Oh, here we go. “Luxury: Cadillac XTS or equivalent”. And only $30 more? Yes, please. Book.

(Side note: Because of Reasons, I will never ever ever buy a new GM vehicle ever for the rest of my life. They’re making some decent cars, and I’ve had said decent cars as rentals, but I won’t buy one.)

Tell Kim and friends what’s going on, then go get a cab summoned to cart me to the airport to get the car. They don’t have any luxury cars in the Emerald Isle area when I get there, so the attendant summons one, leaving me to look at the black BMW 7-Series sedan sitting there. Evil thoughts crept into my mind. “I have a 1300 mile trip ahead of me. Nothing says ‘born for long highway run’ like a big German sedan. I wonder if I can…” and then some one brought up the Cadillac XT5 (a cute-ute) I’d been assigned and I didn’t get to ask anyone about the possibilities switching to the Siebener.

No matter, the XT5 had most of the mod cons: heated and cooled seats, nav, lane-keeping, collision warning with brake assist, Bluetooth so I didn’t have to buy the extra-cost SiriusXM service as I could just connect the phone and use the app since I’m already a subscriber… the only thing it lacked was adaptive cruise control, which it turns out I’d miss the next day. And it was a nice non-descript silver for blending in, important as I hadn’t planned on driving and thus hadn’t brought my ECM suite with me.

Checked out, back to the hotel, texted Kim, and William Sommers helped us schlep the luggage out of storage and into the back of the Cadute. While it would’ve been nice to hang out for the day at the hotel, hitting the road was necessary, so we did.

And after a quick lunch stop, we were on the road. Turns out the Shelleys (who were in the same predicament) had also rented a car and were slightly ahead of us on the road after taking a more direct route to the Florida Turnpike. We would leap-frog them with stops but not see them on the road.

The drive the first day was relatively tame. I was able to stream IMSA Radio to the car stereo via BT and thus got to listen to the 12 Hours of Sebring while I drove relatively close to the actual Sebring, where many of my marshal friends had pulled the epic triple with the Michelin Challenge and WEC races the day before (and some had worked the St. Petersburg IndyCar race the weekend before, and I’d see them in Austin for IndyCar at COTA… but that’s another post). The XT5 was a comfortable ride — better seats than either the Ft. Lauderdale airport or the airplane, no screaming children, and it cruised along at a respectable pace (I wouldn’t have made better time in the Siebener, because traffic). We stopped for dinner just before making the turn onto I-10 W, lamenting that we’d not be able to hit Flounder’s Chowder House in Pensacola Beach or, because of timing, Parrain’s in Baton Rouge the next day, but maybe next time.

I was hoping to hit Biloxi/Gulfport, Mississippi, for our overnight, so Kim started hunting hotels, and there was… nothing. She got a hit on the western edge of Pensacola, and then nothing until the other side of Slidell, Louisiana, which was too far to push.

And thus did we crash out for the night just west of Pensacola. Up the next morning, McBreakfast (Kim can eat the eggs and the sausages), fuel up, and hit it…

…and the degree of Road Fuckery we encountered that day was breathtaking. By my estimation, we lost something more than 2-1/2 hours to Road Fuckery. There were numerous crashes. On I-10. Which is almost completely straight and level. It runs from Jacksonville, Florida, to Los Angeles, California, and there aren’t any stoplights on it, anywhere. But some folks seem to think there’s one over every overpass or small ridge they can’t see over, hit the brakes, and set up accordions. Which breed crashes.

In addition to the normal road warriors, there were a lot of spring break amateur warrior-wannabes out, and no small few rental cars, probably people doing what we were doing, trying to get home to be at work or school on Monday. Spend enough time on the big road, and you can tell the pros from the amateurs pretty easily. This was definitely Amateur Day.

I expected slowdowns in Mobile as it funnels into the tunnel under Mobile Bay. I expected slowdowns in Baton Rouge where it funnels onto the bridge over the Mississippi. I expected slowdowns on the Atchafalaya Basin Bridge between Baton Rouge and Lafayette because there always are. I expected slowdowns in the runup to the big bridge in Lake Charles. I expected slowdowns close to Houston where one lane of the bridge over the San Jacinto River is closed after a barge ran into the pilings. What I didn’t expect was crashes well away from those sites.

The one just over the Sabine River into Texas we never actually saw, because the backup was almost all the way to Lake Charles (20+ miles). This is where the adaptive cruise with station keeping would have been nice.

There was a construction area in Beaumont that had at least 3 wrecks in it. We were able to bypass around most of it.

We got to the National return lane at Hobby a couple hours later than planned. When the attendant went to check us in, the bill came out to… a lot more than I thought it would be. Seems they wanted to charge me $0.30/mile for the 1188 miles I’d driven, which wasn’t on the rental agreement. So off to the building to wait for the right person to fix that, which they did (I had the rental agreement on my phone, as proof there wasn’t any mileage charge listed).

Then our friend Haaris gave us a lift home… and we were home. A day later than planned, but still sooner than we would have been if we’d stuck with the rebooked flight.

Unpacked, and road-wired me then didn’t get to sleep for a while. Kim had already called in to work for Monday, but I went in.

And thus ends The Boat Saga. Every Boat I’ve been on has had its Many Moments of Awesome, but the overall for me this year is going to be hard to top, because a year ago, I didn’t know if I’d be alive, let alone able to Boat again.

Up next: “People keep asking if I’m back, and I haven’t really had an answer. But now, yeah, I’m thinkin’ I’m back.”

The Boat Saga:
That Time I Went Back To Boat, Part I
That Time I Went Back To Boat, Part II: Electric Boataloo
That Time I Went Back To Boat, Part III: Revenge of the Sith
That Time I Went Back To Boat, Part IV: Mockingjay, Part II
That Time I Went Back To Boat, Part V: JoCo Cruise and the Order of the Phoenix (this post)

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That Time I Went Back To Boat, Part IV: Mockingjay, Part II

When we last left our intrepid heroes at the end of That Time I Went Back To Boat, Part III: Revenge of the Sith, Kim had just fashioned engagement rings for us from sparkly pipe cleaners and, in my case, some beads.

Many of us on the Boat were wearing backup shoes while our primaries dried out from the Moistorico deluge, and I was also suffering slightly from a packing mistake. I’d packed 3 pairs of 40-inch waist shorts and one pair of 42s for the cruise, but because my weight has rebounded so much, what I should’ve done was pack the 42s and 44s. I can wear the 40s, but they’re really uncomfortable and because of where the bag’s adhesive bands end up, the tighter waist sort of digs in right there, leading to some skin irritation.

I was wearing the 42s on Monday when I had the bag breach, so they were in the ship’s laundry system, and I’d bought an emergency pair of 44s (only pair they had in my size) at the Old Town San Juan Marshall’s (an odd store, but useful for my purposes) for the princely sum of $9.99 plus tax. So of course they got soaked on the trek back to the boat and were hanging to dry.

Since I’m talking about clothing, this week was the first time I’d tried to wear a shirt tucked in since my surgery, in order to dress properly for dinner in the main dining room. This is more than a little disconcerting as the waistband (with belt) pinches off the bag, and if I poo, it’s got nowhere to go except out via pushing the adhesive loose from my skin. So I wound up switching back to casual clothes soon after dinner instead of staying dressed for the evening. I also made use of my tropical style shirts that are meant to be worn untucked.

Thursday was formal night, and my new suit fits me with the bag and its hernia, plus I can wear braces with it instead of a belt, so it’s less disconcerting, but was still enough so that I changed back after dinner, photos, and the show.

I would guess that with the passage of time, I might eventually get used to it and figure out a way to wear shirts tucked in without pinching off the bag, but for now, it’s uncomfortable mentally. Just one more thing this cancer has taken from me (I normally wore my shirts tucked in with jeans or other long pants in the Before Times).

(During our travel home, I ended up ordering some 42-inch-waist jeans to be delivered because I stupidly donated the pair I’d purchased last year once I’d gotten too small for them, not thinking I’d rebound back up to need them.)

Thursday also saw the Silverback reception — those of us who have been on 5 or more JoCo Cruises. Jonathan, Paul, Storm, and Drew all addressed us, the events of the night before and how it could have gone completely south fresh on all their minds, and they were thankful for us, the old timers, who continue to set the tone and keep the traditions of JCC alive. That there was considerable overlap between the Silverbacks and the Helpers is no coincidence. I was able to thank each of the four of them for all they’ve done for us over the last couple of years. It again comes back to this amazing thing they’ve built and enabled us to enjoy each year, and the care and concern they have for each of us.

Thursday also brought the return of Jean Grae’s Church of the Infinite You (it was scheduled opposite the John Scalzi-hosted ’80s(and ’90s and beyond) Nerd Prom). It’s not church in the traditional sense, but Jean presents a lot of positivity. This year, it was about self-care. Not just the obvious taking care to eat and sleep and go to the doctor, but also keeping your head-space safe, removing toxic people and situations from your life, refusing to let them have any power or sway over you. Finding those things you love and embracing them. Finding your people and loving them. Being kind, and spreading that into the world — and let’s be honest here, in today’s world, with the forces of cruelty running rampant, nothing is more necessary than kindness.

Kindness doesn’t mean rolling over and letting yourself become a doormat. Kindness is having the strength to fight against the cruelty, to defend those who don’t have the strength to defend themselves, give voice to those who lack their own, to stand for what is correct and right. And not just correct and right for you or people Just Like You, but for anyone and everyone. Rights and kindness are not a zero-sum game. Someone gaining access to a thing long withheld because of who they are doesn’t take away from anyone else.

One of the keys to Boat is the seriousness and sincerity of the Code of Conduct. Each Sea Monkey is asked to read and sign a copy of it at embarkation. There’s a mechanism for reporting concerns. It’s, if you will, the bylaws for the community. I’m not going to reproduce it here (it’s somewhat lengthy), but it’s readily available on the JoCo Cruise website. We also, new this year, had a Positivity Pledge. That, I will copy here:

“I [insert name here] hereby pledge to do my best and be my best. To treat others with compassion and kindness. To be helpful, friendly, and patient. So help me Poseidon.”

Jean’s Church is just another manifestation of this. I don’t think I’m doing it justice here –at some point, one of the video monkeys will have something up, I’m sure.

I had a chance to talk with Jean a bit afterward. She knew some of our story, but I gave her the quick summary of the rest. Mostly, I just wanted to thank her. A kind soul.

Friday is the last full day, and it’s indeed full of everyone just trying to soak up as much Boat as they can. I’m no different in that regard. I spent the day catching friends I might have missed or nearly missed, and just being. Of course, there’s also the packing up.

I’d been posting Your Safety Moment stuff through the week, and interacting with those who commented, but I had really kinda run out of gas on Thursday… next year I’ll be better prepared. But on Friday, I had one more, inspired by Jean and Church the night before:

Your Safety Moment for Friday is inspired by the Right (and Left) Reverend Jean Grae. Today is about being safe in your own head. And that means being okay with sometimes not being okay.

It’s okay to be miffed when people run into the elevator past you while you’re trying to get your scooter or rollator or crutches or guide dog pointed the right way.

It’s okay to be pissed off at being misgendered because the legal system hasn’t caught up with the real you. We see you, we hear you, we love you as you are.

It’s okay to feel broken because you’ve stayed in your cabin most of the cruise because being around noise and people and all that is scary… but you’re here, on this boat, with people who love you regardless, and you showed up. Go you!

It’s okay that you didn’t do that thing or see that person you wanted to see. There’s always another chance.

It’s okay to be mad at the fates because you have to shit into a bag stuck to your abdomen. It beats the heck out of being dead, but it still sucks, and your friends love you regardless.

It’s okay to feel constrained by a job, or family, or a religion that prevents you from outwardly being who you really are. Your quest to find a way to being you all the time is noble and worth pursuing.

It’s okay to be mad about a medical situation that’s changing your life, taking away things you love to do and experience. It’s great to claw back every last scrap of it you can, even if how you get to do that thing you love is now different. Find a door to open, a window to climb through, or a wall to fucking blast through to get there. It’s gonna hurt, it’s gonna be scary, and it’s gonna be so worth the effort.

It’s okay to ask for help. It’s okay to receive help you didn’t ask for, but needed anyway. You may be one who prefers to keep the karmic balance tilted to give, rather than receive, but remember that cool feeling you get when you give? Other people like that feeling, too, and you’re giving them a chance to feel it, too.

It’s okay to find a pro to help your head. It may take a few tries to find the right one for you, but keep doing it. It’s so, so important.

It’s okay to not want this ride to end, to want to stay on this Boat forever and be sad when it’s over. Look at it as an opportunity to spread the kindness of Boat to the rest of your world. The world needs us in it, being warriors for kindness. Make it your main quest.

It’s okay to not be okay. Just keep trying to get to whatever okay needs to be for you.

I’m going to close this topic, but if you read this and see me around, just give me a quiet “Fuck, yeah.” See you next year, and be safe so that’s possible.

Your Safety Patrol,

Jim Crider

The “Fuck, yeah” was from Jean. A quiet, if delightfully profane (in some circles), affirmation. Be the most you that you can possibly be.

Friday was the day of lasts. The last dinner, the last show. The last big pool party. It really does feel like that last day of camp, or anything (for me, the Cannonball One Lap of America is a good example) where you’ve kinda stepped out of the real world for a while, your return to the real world is imminent, and you just want to postpone it as long as possible. The Legoosterdam was formally decommissioned and returned to its shipping crates. The vintage video game cabinets in the arcade were shut down and removed belowdecks for shipping. The two-ton-plus games library was packed up. The signs were taken down.

The last show has, since 2016, been a series of tributes to musicians and performers we’d lost since the last cruise. What that means is Jonathan skips a couple of songs known to break his audience (“I Crush Everything” and “A Talk With George”, and he’s largely dropped “Space Doggity” from all his set lists because they’ve apparently gotten a dog and “It’s just too sad!”) and the cast of characters performs, in sets of David Bowie songs, or Tom Petty, or this year, The Monkees (for Peter Tork) and Aretha Franklin. There’s some I know I’m missing, but those stand out in my mind.

And then the finishing of the packing (don’t forget to leave yourself clothes for the morning!) and the setting out of the suitcases and then the big final party. One last chance to see friends, have a chat, exchange contact info if you haven’t already, give and receive hugs… I got no small few “Fuck, yeah”s.

There’s a tendency to want to stay up all night, in the hope that if we don’t let Friday end, Saturday won’t come. I’m getting a bit too old for that, but that doesn’t mean I wanted it to end. I did, though, go to bed eventually.

We had no problems getting off the ship or through Customs, and caught a cab to one of the hotels where we knew friends would be hanging out, to pass the time before our flight and kind of extend the cruise feeling a little bit.

It was then, with connectivity restored, that we discovered our flight home had been 737MAXed.

But that’s a story for The Time I Went Back To Boat, Part V: JoCo Cruise and the Order of the Phoenix.

The Boat Saga:
That Time I Went Back To Boat, Part I
That Time I Went Back To Boat, Part II: Electric Boataloo
That Time I Went Back To Boat, Part III: Revenge of the Sith
That Time I Went Back To Boat, Part IV: Mockingjay, Part II (this post)
That Time I Went Back To Boat, Part V: JoCo Cruise and the Order of the Phoenix

That Time I Went Back To Boat, Part III: Revenge of the Sith

So in That Time I Went Back To Boat, Part II: Electric Boataloo, I’d gotten to the first night’s concert. I hadn’t gotten through the concert without crying, but we got there.

Day 2 was the ship’s visit to Half Moon Cay, a private island in the Bahamas. We were last there on JCCC2, our first JoCo Cruise, in 2012, and I’d splurged on a cabana with butler service. I’d done no such thing this year, and HMC is lacking in shade if you’ve not reserved a shelter, plus the footing is a little tricky for someone with mobility issues, plus it’s a tender port, so getting Kim’s scooter on and off is non-trivial.

The practical upshot of all this is we didn’t get off the ship. Kim booked a trifecta of spa treatments, I did my proctoring shift in the afternoon, and during the course of my wanderings, I placed two Lego micro-figs on “our” balcony on the Legoosterdam.

That’s right: Lego artist Nathan Sawaya was back this year, and in addition to his Lego JoCo statue, he’d brought a 10-foot-long Lego recreation of the Oosterdam, which was set up on a table in the Deck 1 atrium area. And as per usual, there were tubs of Lego there so that Sea Monkeys could create their own additions (note that the Legoosterdam was made up of 5 or 6 subassemblies, with the bricks in each glued, so it was difficult to damage the sculpture and all the additions were easily removed at the decommissioning ceremony at the end of the cruise. Yes, there was a formal decommissioning, presided over by the Oosterdam’s captain). And thus did I locate a couple of microfigs, and place them on our balcony. There, they enjoyed the view for the rest of the week.

It was a nice, low-key day, just the thing to recuperate from the frantic pace of embarkation day.

For dinners, this year we were in fixed seating for the first time, as it’s much easier to manage Kim’s dietary restrictions if we are at the same table with the same servers each night. As it worked out, we were at a table with our friends the Thibeaults, another couple, and 4 ‘floating’ seats we’d fill with different folks each night.

Sunday saw the debut(?) of Beetloaf on the dinner menu. A vegan loaf made of beets, pretty much as it says on the tin. How, you might ask, did this happen? Well, seems that “beetloaf” was a throwaway joke in a Hyundai Super Bowl ad involving an elevator descending into various levels of hell — in this case, a couple of omnivores invited to a vegan dinner party. The elevator doors open, and the host is presenting the beetloaf. It was a single line, really a throwaway joke, in a car commercial, but someone at The Home Office (Drew denies it was him, but this had all the hallmarks of a Drew joke) decided it would be funny if the ship served beetloaf one night, and the chef figured out a way to do it. I did not sample it, but I’m told it was great if you like beets. This follows last year’s Tide Pod dessert in the new tradition of something pop-culture-y on the menu.

This is a good time to mention that, because we’re a full-ship charter, drinks and foods took on JoCo-specific names, with references to performers, songs, SF/F books, movies, shows, comics, games, etc., in the names. On the last night, in tribute(?) to John Scalzi’s penchant for throwing 3-5 random items in his kitchen into a tortilla and calling it a burrito (This has led to long and borderline heated arguments between John and Wil Wheaton in the past, with Wil being a staunch burrito traditionalist, lawful good alignment, if you will, and Scalzi being chaotic evil, basically), the chef created a dessert burrito that contained what appeared to be a raspberry Zinger snack cake, some marshmallow fluff (not my favorite part of it), and a couple of other random quasi-dessert items and turning it into a “burrito” inside a flour tortilla.

Drinks included a rough approximation of the Pan-Galactic Gargle Blaster (the real version is sadly unable to be created in Earth’s atmospheric conditions) and others that referenced various nerdy properties and performers on the boat. Being a good boy, I largely avoided the booze (temptation was great at times, but I’m trying to let the chemo kill the liver mets, though I think doing it with whisky would be more fun), and mostly stuck to virgin mojitos, though I did sneak in a Principal Sabourin (a Shirley Temple).

Sunday’s show was the “Hastily-Assembled Entertainment Burrito”, which included, among other things, what’s become a JCC staple, “Worst First Page”, where 5 people, typically pulled from the writing track of programming, read the worst possible first page to a hypothetical novel. And also Competitive Guitar Tuning with Jim Boggia.

Monday was a sea day, and that morning, I hosted my first-ever Shadow Cruise Event, “Crider Talks Cancer (And Probably Poop, Too)”. Sort of an interactive, spoken-word Reader’s Digest Abridged version of the blog. About 20-22 people stopped by for at least some of it (I’d tried to pick a time where there weren’t a lot of conflicts, but that’s damn near impossible), and in keeping with my “lean into it” philosophy, I wasn’t shy about talking about the impact on my mental health and the trips I took to some dark places — and Kim was kind enough to share her perspective on both my situation, her situation, and the resulting our situation. Some of the people who came, did so because they are dealing with non-cancer-but-still-life-altering medical situations of their own, and the “how do you deal with this?” aspect of my situation became a key part of the conversation.

From the feedback I received, it seemed to be well-received, and we made some new friends with the folks who came, but we hadn’t really met before. I’m already thinking about next year, and inviting other cancer survivor Sea Monkeys to join in — because even if two people share the same type of cancer, their cases and experiences are as different as they are as individuals. Additional perspectives can only help, both the commonalities and the differences.

I did have some visual aids, namely an (unused. I may have put my dignity in the fire safe when I got diagnosed, but I’m not unsanitary) colostomy bag. As it turned out, I wound up needing to do a bag change shortly afterward because I’d made an application mistake with the Brava strips and left an opening. I was at this point a little twitchy about whether I’d brought enough supplies, but as it turned out, that bag made it to Friday, and I did a change then just to make sure everything was fresh for the trip home.

Tuesday found us in Tortola, one of the British Virgin Islands. Hadn’t been there before, so it was indeed a new experience. They got a LOT of hurricane damage in 2017, and there’s still quite a bit of it visible. Just off the pier, there’s a small section of duty-free shops as pop up around cruise ports all over the world, and among them is a small liquor and cigar store. It is there that I found a unicorn, a bottle of the 2018 release of Michter’s 10-Year Single Cask Rye. They had three bottles, somehow. Keep in mind that Spec’s, the liquor store juggernaut of Texas, got something like 24 bottles chain-wide. As I was number 130 on the allocation list, I didn’t get one. Well, I got one. Alerted a fellow appreciator of quality whisk(e)y to this find, and also pinged another one who wasn’t on Boat this year to see if he was interested. When he waved off, I passed the find on to another friend who is somewhat legendary for his whisk(e)y collection. The store soon had no bottles.

Kim and I met up with our friend Jill, and we decided to catch a cab over to a restaurant on the beach on the other side of the island. It was at this point that we met Yankee, who is probably the oldest active cab driver on Tortola. He got his nickname because he spent some time in New York, but he’s a native, and related tales of when the road over the mountain we were on was just a donkey path. We learned that Tortola didn’t have electricity until 1966, and after an occasionally-harrowing drive up and then down the mountains, we arrived at our destination and had a very nice lunch. And then back up and over the mountain, and more tales of hurricane damage,  And lots of chickens, a few goats, and a cat or two.

Back in the port area, we ran into Sparks & Zaps, who invited us to join them for a walk around. Kim was running out of her step allowance for the day (MS means you have to budget for stuff like that) and headed back to the ship, but I joined them for a meander. It was good to catch up a bit.

Ah, but that night was our special dinner… we’d booked a reservation for Rudi’s Sel de Mer seafood dinner in the ship’s Pinnacle restaurant. We were joined by our friends the Basdens — we met at dinner the first night of JCCC2, which was both theirs and our first JoCo Cruise, and hit it off immediately. Glenn has been my partner in crime for a few amusing projects, and we make a point of doing something together on every cruise. It was an excellent meal with even better company.

Which brings us to Wednesday and San Juan, Puerto Rico. We went traipsing around Old San Juan for a while, with Kim on her scooter. Not exactly the best for the mobility challenged, with lots of hills, narrow sidewalks, and sometimes no curb cut, but we managed. Kim kept getting stopped by skin treatment peddlers, all of whom somehow also have a store “in the famous Galleria Mall” once it was disclosed we were from Houston. (I’ve not been in the Galleria in years, but from the sound of it, it’s entirely full of skin cream stores now.)

Met up with some Sea Monkeys at Senor Paleta’s for a frozen treat, then headed back toward the pier.

Since JoCo Cruise has become a full-ship charter starting in 2017, we’ve had to split the shows on the ship because the ship’s theater and dining room simply can’t handle everyone at once. This lead to a bit of wailing and gnashing of teeth as some of our number have severe FOMO (Fear Of Missing Out) issues, and each show will necessarily have variations just because we’re talking about performers who play the room and the crowd, and if the crowd is different, so is the performance.

So the organizers thought it would be a good idea to do a land-based concert for everyone at one of the stops. This has been semi-jokingly called “JoCoachella”. The first two were in the town square of Lareto, Baja California, and this year was held at Bahia Urbana park conveniently just a short walk from the cruise ship terminal in San Juan.

They set up food and drink service from local vendors, and the lineup was Paul and Storm, Jill Sobule, Tune-Yards, Jonathan Coulton, and finishing with They Might Be Giants.

We got through Paul and Storm, Jill Sobule, and Tune-Yards, and then it rained. Just your average pop-up tropical downpour. I happened to be under the roof of the bar area, but Kim got soaked. She made a run back to the ship to change (something about thin white shorts and rain didn’t sit well with her), and came back as JoCo started his set.

It started raining again toward the end of JoCo’s set. I looked at the radar, and the storms were backfilling and we were looking at at least a couple more hours of rain. No lightning, though.

Everyone who could gathered under available shelter. Kim and I were at a table under the bar area roof, snacking on some delightful roast pork (the vendor said they went through 4 pigs. They seemed very happy about this) as everyone crowded in around us. People started an impromptu (and screamingly off-key) sing-along of “Bohemian Rhapsody” and some other songs.

It was then that Kim decided it was the right time to ask me to marry her.

“Do you want to get married?”
“Sure, at some… wait, are you serious?”
“Yes.”
“Well, if you’re serious, so am I.”

Hundreds of people around us, mostly out of tune, and I was the only one who heard her. She says it was more some fortuitous timing rather than something calculated — she’d originally intended to do so at our fancy dinner the night before, but I’d inadvertently ruined that opportunity by inviting the Basdens to join us — but honestly? This makes a better story anyway.

And then they announced that the TMBG set wasn’t going to happen there because of the weather, and we were to head back to the ship.

I’d managed to largely stay dry up to that point, but, like everyone else, got soaked heading back to the ship. The process was of course drawn out by the security protocols, but hey, no worries, we’re all with friends. Lots of speculation about how they’d work in TMBG on the ship, most of which was missing one key fact.

At some point, the fireworks that were intended to be set off at the end of the show were set off (Jonathan said someone asked him about it as he was heading back to the ship for the last time, and, thinking the entire evening had been destroyed, said “Just set ’em off.” So they did).

We got back to the ship, back to our cabin, out of our wet clothes, and were toweling off when Principal Sabourin came on the 1MC and announced that TMBG would be playing an abbreviated set (because of Reasons) in the main theater starting NOW, and they’d let in as many people as could fit safely. Kim and I looked at each other, both starkers (well, I was wearing a colostomy bag, as is my wont), realized there was no way we’d make it up there before the theater was full, and I just went for the TV remote to engage the live stream. (We would not be alone in this, it turns out).

So I’ve been trying to see TMBG live for more than 25 years. I still haven’t, but I can say I watched them on TV play live about 800 feet away from me.

The set was abbreviated because John Linnell, one half of TMBG, was not a passenger on the Oosterdam, having flown in to San Juan to do the show, plus some of the band’s crew likewise. And as visitors, they had to be off the ship at some time before the ship’s scheduled departure, which meant they had to be off the ship by 11:59pm. They made it with 4 minutes to spare.

And thus we now have #Moistorico, and one hell of a good story.

Some of the how this was pulled off has been related since then, but that’s for those who were doing it to tell. I’m amazed but not terribly surprised at the adaptability of the JoCo team. Though the rain hadn’t been forecast, they made it happen.

Thursday and Friday were sea days. Kim and I went to the craft room (for a normal HAL cruise, it’s a computer lab where HAL’s passengers can take classes about how to send an email. Have I mentioned that HAL’s demographic is Really Old People?) where Chicazul was holding her traditional formal night-day pipe cleaner tiara class, and Kim fashioned us engagement rings. They will become an heirloom of our house (i.e. we’ll put them in a shadow box or something similar).

It is here that I must mention that the story of our engagement spread through the ship, and it took about 3 nanoseconds for it to mutate. I look forward to hearing increasingly fanciful versions of the tale as the years go by.

I’m going to break here. Look soon for That Time I Went Back To Boat, Part IV: Mockingjay, Part II.

The Boat Saga:
That Time I Went Back To Boat, Part I
That Time I Went Back To Boat, Part II: Electric Boataloo
That Time I Went Back To Boat, Part III: Revenge of the Sith (this post)
That Time I Went Back To Boat, Part IV: Mockingjay, Part II
That Time I Went Back To Boat, Part V: JoCo Cruise and the Order of the Phoenix

That Time I Went Back To Boat, Part II: Electric Boataloo

We left off That Time I Went Back To Boat, Part I with me arriving at the Helper Monkey meeting and being greeted by friends Sparks and Zaps McGee, who normally would not have been there but came down looking specifically for me.

And so we pick up with the Helper Monkey meeting started, lead by Cruise Mom Thera.

The Helper Monkey program has grown and evolved along with the rest of the cruise, and now there are a LOT of people each pulling a small shift (many hands make light work), doing things like hanging and updating the signs posted throughout the ship with schedules, doing check in and badge/lanyard handout at the terminal, hosting tables at dinner, serving as “proctors” to answer questions and make sure shadow events are going well, needs are met, etc., putting up post-it notes with positive messages in elevators and similar public spaces, a limited amount of line wrangling, and working the JoCo Info Desk area. There are also “Ambassadors” (as we were calling the role this year. Last year it was “RAs” for “Resident Assistants”, and if you’ve lived in a dorm, you know of the RAs) who would be visible on the ship, helping people find events, answering general JoCo Cruise questions, and generally trying to make sure enjoyment was on max and hassle was on min. The Ambassadors would wear a pink sash (visible, but not a color that conflicts with any of the ship crew’s emergency wear). As has been the case in the last couple of years we’ve gone, I was basically there to be Thera’s utility infielder, handling whatever needed an extra hand, etc. I’d also take a proctor shift (pink hi-viz vest), and would be one of the Ambassadors.

Well, here’s where things get kinda funny. Thera contacted me ahead of time to workshop what I wanted on my sash — and at this point, I just figured the Ambassadors would have personalized sashes. So I submitted some ideas:

Safety Patrol (yes, I used to be one back in 5th and 6th grade)
Chief Post Marshal (this is the title I typically have at Formula 1 races)
Ties the Room Together
One Who Abides (okay, that’s enough Lebowski)
Poo Bag Carrier
Racer X (who is secretly Rex Racer, Speed’s older brother)
Hair Less Soft than Brooks’

About that last one: Fellow Silverback-grade Helper Jim Brooks is possessed of the softest hair. Chinchillas are envious of how soft Brooks’ hair is. And since we’re both Jims, that’s one way to distinguish us (I’m also larger and beardier than Brooks, but this one is a sillier thing).

Of these, I preferred Safety Patrol or Racer X. Thera then decided on Safety Patrol. Cool. I was looking forward to seeing what sort of silly titles the other Ambassadors would have.

Well, Thera produced the stash of Ambassador sashes, which all said “Ambassador” on them (note here that Thera has a fancy “Cruise Mom” sash, and Sara Chicazul has one from last year proclaiming her as the Supreme Porpoise Sea Witch). Then she announces that I am to be the Safety Patrol for the cruise and presents me with my special sash.

So that’s a thing that happened.

The gag here is that our last cruise had Kim tripping on a broken piece of ship, doing a Gal Gadot-grade layout, and landing hard enough to break her right shoulder, so my primary task was to keep the both of us out of the infirmary (spoiler alert: mission accomplished).

Well, a little later on in the day, I decided it would be fun to post a Your Safety Moment on Twit-Arr. They would be something legitimately safety-related, but I’d present them in a quasi-serious, and, if it worked, increasingly absurd manner as the week progressed. So the first one was about hallway/corridor/elevator lobby safety and courtesy, and I spoke of myself in the third person as Your Safety Patrol.

Your Safety Moment got some attention. I started getting questions, some of which were legitimately safety-related, others were semi-serious, some were silly. And I responded in kind.

I won’t be trying to do a blow-by-blow here. For starters, that’s boring. And no one needs to know what I had at every meal. I will hit some highlights, though.

Like the opening-night concert. Designed to be a bit of a teaser of what was ahead, it included several of the musicians who would be performing during the week, and of course organizers JoCo and Paul and Storm. It also started with the anointing of the Team Leader for the Red Team (our team this year, early dinner/late show) and, in their show, Gold Team (early show/late dinner). Red Leader and Gold Leader get Rebel X-Wing pilot helmets (this year’s was a Poe Dameron helmet, so technically The Resistance rather than The Rebel Alliance), and last year’s Red Leader had crafted a trophy/scepter to pass on to her successor, which will become an heirloom of Red Team in perpetuity. The Team Leader and their consort also have reserved seats up front.

And once Principal Sabourin (Paul) and Coach Cruise (Storm) and JoCo had completed Morning Announcements (which are always called this regardless of the time of day they’re made), there was some music. Well, out comes cruise favorite Jim Boggia and he’s managed to lose his voice between getting on the ship earlier that day and showtime. So we do a little singing along with Jim, including “When You Wish Upon A Star”, which had most of us stumbling past the first verse… but one lovely voice, whose name eludes me, kept going, and Jim focused on her, and Paul got her a mic, and it was amazing and perfect.

And then he did “With A Little Help From My Friends” and I totally fucking lost it. Just ugly crying as I’m singing along at the back of the theater in the accessible seating with Kim. I did not expect that at all, and I’m having a really blurry screen right now just typing this. After the couple of years Kim and I have had, with health and job and injury and more health woes, it’s family and friends who have kept us going. And here we are on this Boat, when a year ago we’d had to cancel and I honestly wasn’t sure I’d even be alive in a year’s time, let alone able to Boat again, all my brave words to the contrary (yes, I go back and read my own blog sometimes to keep from repeating stories – my superpower is endless repetition and also attracting screaming children in restaurants – and to have a rueful laugh at how things changed rapidly early on in my trip through the minefield).

So that was a thing that happened. Remember in Part I when I said I was just going to lean into it this year and let the feels happen? Yeah, well, witness Scary Letting Myself Feel Things Openly Event Number 1. I mean, I kinda expected it running into friends. This was a blindside.

Do I wish I hadn’t? No, I do not. I’m glad I did. It happened, I let it, and it was scary and amazing and exactly what I needed to let happen, and it set the precedent for the rest of the week.

I’m going to break the chronology here and talk again about how this cruise, being on this Boat with this group of people, affects us.

I know I keep going on about how this cruise, this group of people is amazing and adaptable and kind and accommodating. Kim and I have certainly experienced this as our situations have (d)evolved. And then there’s our friend Barbara Reece. The first word that comes to my mind about Barbara is “fierce”. She tackles whatever life throws at her with gusto, wringing every last drop of enjoyment out of everything she does. We’ve sort of had overlapping circles on previous Boats, but this year I had the privilege of getting to spend a little time with her and discovered we shared being music-powered, as well as some common interests in music genres. And here’s where things turn episode-of-The-Twilight-Zone ironic: Barbara has a medical condition, Osteogenesis Imperfecta, that’s caused her to become profoundly deaf over the last few years, a situation she’s currently dealing with by using some alarmingly powerful hearing aids while she and her medical team work out possible other solutions. I can’t begin to grok what it’s like to have your world, a place full of sounds that give you joy and keep you going, go silent. Still, Barbara’s one of those who refuses to roll over, and her determination inspires me. All this is leading to a moment of grace, courtesy of the people who make Boat happen. Barbara has graciously allowed me to share her words with you:

I’ve been losing my hearing for about 13 years now, and attending the JoCo Cruise for half that long. This means that during the last 7 years on the boat, my hearing has been inexorably sliding down the ski slope into oblivion, which in turn means that I no longer experience the cruise the way I once did. Specifically, it means that these days, I don’t attend a lot of performances or talks on the cruise, because I can’t understand anything, unless it’s music with which I’m already familiar.

(Exposition for new people: I was born hearing. I have a genetic disorder, a co-symptom of which is unpredictable and untreatable adult-onset hearing loss. I’m currently profoundly deaf, which means things have to be +100dB for me to hear them unaided, and if the pitch is higher than ~500Hz, I probably still won’t hear it at all. I wear hearing aids, but volume isn’t the problem: clarity is.)

I didn’t start to have this comprehension issue until I suddenly went from severely deaf to profoundly deaf in the summer of 2017. The problem now is that I hear things, sure, but I don’t understand them. Words are a mess. Making sense of words in noise is challenging. Understanding the music I’m hearing takes measurable mental effort and picking unfamiliar lyrics out of that music is impossible. The mental load it usually takes me to just identify a song, whether I know it or not, is significant. My hearing aids are powerful, but can only do so much, and the complex algorithmic decisions they make to shift sound into my range and volume without destroying it with gain often make it hard for me to make sense of what I’m hearing. When I’m in a room with music, I feel it more than I hear it.

All this means that when I went back to the cruise in 2018, I knew it would be hard, but I wasn’t emotionally or mentally prepared for just how Hard it would be. It was a serious blow to my spirits. I had to leave performances because FOMO when you’re standing Right There is exponentially worse than FOMO when you’re not there at all. There were things I really wanted to do that I just couldn’t, and I wasn’t expecting it, and it was lonely and it stung.

Sea Monkeys, being the wonderful people that they are, did not fail to notice my struggles and rallied around me. I was surrounded by an ocean of love and support. Jean Grae even told me – too late, unfortunately – that she’d had a transcript of Church for me so that I could follow along. Most memorably, Melissa Harrison Fortenbery, who has one of the biggest hearts of anyone I know, gave me a memory I will never forget. One night, out on the Lido back deck where the night owls party, she explained my situation to Drew, and Drew and the Interns suddenly surprised me by gathering in a close circle around me and singing a capella, just for me, so that I could hear them clearly.

I can’t really describe it, but I’ll never forget that moment. I might be a little teary-eyed just writing about it. I’ve heard from others that Drew has said it’s one of his favorite cruise memories ever – it’s definitely one of mine – and I am just so, so grateful.

After last year’s cruise, I aggressively pursued a potential hearing-restorative surgery for my right ear, which is effectively deaf, even with a hearing aid. As a result, last fall I had a stapedectomy surgical procedure, meant to replace part of the middle ear and improve my hearing, but unfortunately, it failed. I returned to the boat this year just as deaf as I was last year – possibly even moreso – but with my expectations better set and a better mindset about how to deal with it. That said, it was still a struggle, but not the surprise disappointment of last year.

I ran into Drew early on in the week, and he immediately recognized me and confirmed for me that last year’s singing was still one of his favorite cruise memories. He asked me how I had been and I told him about my failed surgery, but that I was coping better overall. He said he wanted to sing for me again and I blushed and said I’d be grateful, but that I knew he had a lot going on, not to worry about me. He hugged me and ran off, but on the last day I saw him again at both the Silverback party and later at the Gallery Bar, where he asked me where I would be later on and I told him I’d be on the aft Lido as usual.

I saw him arrive there much later, but we were both chatting with others for a time and I didn’t think too much about it until I saw Drew walking towards me. He pulled me away from my chair and out to the open deck, where the Interns and other friends gathered around me once again, and again they raised their voices in song for me. A close circle of people gathered around me, and someone hugged me from behind, and they sang. The intensity of the feeling of the sound took my breath away, and I sobbed.

I couldn’t tell you what they sang. The words were lost to me and I don’t even remember the melody clearly. But I FELT it. I felt loved, and included, and understood, and welcomed, like I was Home. And while they sang, I looked up at the moon and cried, and I looked at the smiling faces of the family around me and cried some more at the good fortune and gratitude and joy I felt to Belong. The hugs I got after that were some of the Best Hugs Ever. And I know some of you were there, and I don’t remember what you said or know how you felt, but I remember being grateful that you shared that moment with me, and I remember feeling the joy and the love and belonging and wishing it could go on forever.

JoCo Cruise is Magic. 

Jim here again. That’s what this thing does. It makes magic happen.

I had hoped to cover more of the trip in this one, but a) this is now long enough, b) it’s nearly midnight as I type this, and c) I’m honestly a bit emotionally spent revisiting some of this on top of the ongoing march of medicine that is life here in the world of Kim and Jim. There’s probably 2, maybe 3 more posts (now watch it turn into 4 or 5) covering Boat and our travel adventures, and then I get to talk about playing in traffic again, and THEN maybe I’ll be caught up enough to talk about how things are just kinda chugging along with the treatment, not that I’m complaining.

So stay tuned for That Time I Went Back to Boat, Part III: Revenge of the Sith. I promise no Jar Jar Binks or Hayden Christensen appearances. I have every intention of getting to it tomorrow and really hope to be able to get the rest of it down this weekend.

(Special bonus paragraph for regular readers: Poop.)

The Boat Saga:
That Time I Went Back To Boat, Part I
That Time I Went Back To Boat, Part II: Electric Boataloo (this post)
That Time I Went Back To Boat, Part III: Revenge of the Sith
That Time I Went Back To Boat, Part IV: Mockingjay, Part II
That Time I Went Back To Boat, Part V: JoCo Cruise and the Order of the Phoenix

That Time I Went Back to Boat, Part I

We’re back. The laundry (SO MUCH LAUNDRY) is done. I’ve been back to work. I’ve had oncology appointments. I’m getting ready to go play in traffic at IndyCar at COTA in Austin. What I haven’t had is time to write.

But in keeping with galactic standards for prolonging suspense, first I’m going to talk about a couple things that went down before Boat.

Remember that seroma/fistula I’ve had since about this time last year? When I was meeting with the surgeon, he had Colleen the NP/PA chemically cauterize what was left of it with silver nitrate. It stopped bleeding, but was still seepy of mild body-is-fixing-this-shit fluids for a while after that. I stopped packing it, but I maintained the gauze/Tegaderm combo for a while.

Exactly a week before we left for Boat, I stopped needing to bandage it. This was also exactly a week shy of one year since it opened. I brought the kit with me on Boat, just in case, but it wasn’t necessary. Good.

Kim and I both had been talking for years about replacing our luggage. So we finally just did it this year. After doing some research, we went with “Away” luggage, despite not being Instagram influencers or whatever rot that involves scamming companies into giving you free shit if you post pictures of glamorous people using said shit in exotic locales. No, we paid retail like the decidedly unglamorous (well, me, at least. Kim is hot.) cretins we (me, again) are. Well, we did use a coupon code. And by getting multiple bags at once, Away automagically applies a “set” discount. Kim got a Bigger Carryon (no battery) and a Medium, and I got a Bigger Carryon (with ejectable battery) and a Large. I also ended up ordering a garment sleeve to fit the Large so I wouldn’t have to schlep the 2-suiter separately.

And because we have to have our fun, I also ordered a set of Tile locators, which were sequestered into the bags. I was, in fact, able to “see” when they were loaded onto the plane at Hobby.

I packed 35 poop bags and attendant material for Boat. With supply lines long and difficult to maintain, I wanted to make sure I had Enough Supplies with me. Volumetrically, they took up a lot of one of my suitcases. I’m okay with this.

The Trip There

Friday the 8th, we got home from our respective jobs, did a little last-minute bundling up (Kim had taken the pups to Preppy Pet that morning on her way to work), and the driver from the car service arrived just a wee bit early (good). Loaded everything up, and we were off. I did something unusual for me: I buried myself in my phone so I wouldn’t get travel angst being a passenger. It worked well enough. Given that it was the unholy trinity of regular Friday Houston rush hour traffic, the start of spring break, *and* Houston Rodeo all at once, it was definitely the right decision.

We got to the airport in plenty of time for our flight, checked the bags (my Large was *exactly* 49 lbs. I win.), got Kim a wheelchair assist (we’ve learned that with the MS, it’s best to do so to preserve her energy for the important stuff), managed to get through security even though it was the start of spring break and everything was crazygonuts with amateur travelers unused to how things work in airports, and off to our gate, whereupon we learned that our 8:20 flight was delayed to 9:35, which would put us into Ft. Lauderdale around 1AM. Yay.

Oh, well, nothing to do but wait. And get dinner. Here let me sing the praises of Pappas Burger in Houston Hobby Airport. While Kim is not celiac, both her neurologist and her rheumatologist have suggested some recent work in other autoimmune disorders (like the psoriatic arthritis and MS combo that Kim has) is seeing improvements in patient pain & discomfort levels by eliminating gluten, so she has gone gluten-free and has indeed noticed both an improvement and, if accidentally glutened, anywhere from several days to a couple weeks of increased pain levels above ambient.

So Kim looks up Pappas Burger and sees they do have gluten-free options, so off I go to order dinner. The cashier becomes no-shit serious when I mention the need to be gluten-free on Kim’s order. She walks me through all the bits that will make up the meal, subs in stuff that needs subbing in, reads it all back, calls someone else over to review and read it all back, and that someone else tells me that they’ll take steps to avoid cross-contamination, change out their gloves, clean surfaces, etc., to prep Kim’s meal. They are, in sum, very very serious about accommodating food allergies, even in this airport location. I was quite impressed. The food was tasty, too.

We eat, eventually get on our delayed flight, and the third seat in our row is taken by a young lady who is having queasiness issues. Uh-oh. We politely ask if she’s ill, because starting off this trip that way is a Major Issue (not to mention we’re both immunocompromised at this point), but it turns out she’s pregnant and the nausea is from that. The flight attendants look after her, and there aren’t any problems.

We do not get Plane Crud.

Arrive FLL, collect the luggage (Tile tags again, just for amusement, pinged when they came into range), get a cab to the hotel because it’s stupid late. Our driver is listening to an internet radio station from Nigeria or some other West African nation. There’s a lot of shouting, but neither Kim nor I can tell if it’s happy shouting or angry shouting. No matter, we get to the hotel, get to our room, discover it smells of stale cigarette smoke, and are too tired (and the hotel is sold out anyway) to do anything about it. They do refund me 10,000 points (I’d used Hilton points for the stay), at least.

In the morning, we finally started running into Sea Monkeys in the hotel lobby. Start conversations that would pick up at irregular intervals throughout the rest of the week. Our local(ish, now that they’ve moved to Beaumont) Sea Monkey friends the Shelleys offered to give us a lift to the port in the morning in their rental, which we jumped at because getting Kim in and out of a shuttle bus is a bit problematic (she can do the steps, but then she hurts a lot for a day or two. No bueno). To the port we go, check the bags, walk past the people with the electric scooters outside (this would prove to have been a mistake later), and into the terminal for check in.

I lasted several minutes and a few key Sea Monkey greetings before seeing “Cruise Mom” Thera, one of our dearest friends, and just openly weeping while hugging the stuffing out of her.

I didn’t want to count this as possible until we were actually on the boat. But getting through check in at the terminal, having our card keys in hand, made it real. We were going to do this.

I made a decision right then, hugging Thera and crying, that I’d go against my staid Oklahoma upbringing and just lean into it this week. The thought of it was scary, but I thought I might need it, and Boat is the best place outside my own home where I’m comfortable enough to even try it.

Some Background on JoCo Cruise, aka JCC, aka Nerd Boat, aka Boat

So back in 2010, a couple of indie musical acts who shared a booking agent and often a stage, Jonathan Coulton and Paul and Storm, let said booking agent talk them into mounting a vanity cruise. They invited some other performer friends, made arrangements with a cruise line to be a group providing their own entertainment, and sorta held their breath to see if anyone would want to do such a thing. Turns out, a couple hundred people did.

We were not among them that first cruise, not because I didn’t want to, but because I didn’t find out about it until just a couple months before it, and we didn’t have time to rearrange our lives to make it possible. But I decided that if they did a second one, we’d be on it.

They did a second one.

And we booked it. This time it was about 450 people (including performers and their families).

It was, in a word, amazing. We met people who have become dear friends. We saw musical acts we knew, and new-to-us artists we didn’t. We saw comedians. We used lots of sunscreen. We played games. Sea Monkeys (as we call ourselves, a reference to JoCo’s song “Code Monkey”) are just a wonderful group of people.

In 2013, for the third one, I joined the Helper Monkeys, when there were only just over a dozen of us. Volunteers who helped things run smoothly. I’ve been a Helper Monkey ever since, even as the role changed and number of Helpers has increased as the cruise has grown. We did skip 2016 on purpose, because we had other big travel that year, but we returned on 2017 when, for the first time, JoCo Cruise became a full-ship charter. Just us Sea Monkeys. Regular readers will recall that Kim was tripped up by a broken piece of ship and broke her shoulder on 2017, and we had to cancel 2018 after my situation went sideways.

This is also a group of people, from the organizers to people who know us only by reputation, have been just incredibly supportive of us as Kim and I have had these life-changing events. I have it on good authority they’re pretty good about that with others, too, as it should be.

Every year, there’s something that surprises us. Some new-to-us performer who blows us away. Some moment that becomes a shared touchstone that people reference again and again for years afterward. There are new friends well met, and old friends well(er) met. Costumes and buttons and pins. People spend their own money and effort making things to give away to other Sea Monkeys because they love Boat and what it means.

This is a cruise where the “shadow cruise” of events and performances by the community of cruisers themselves has come to occupy more programming time than the official events. It’s full of diverse, creative people. This is a place where some clever folks came up with a shipboard social media setup called “Twit-Arr” that, with the cooperation of the ship, makes use of the shipwide wifi but doesn’t require purchase of expensive internet packages to use — and it’s Sea Monkey-created, not “official”. This is a place where many people have presented as their true gender for the first time in public. This is a place where people with assorted types and levels of brokenness, who may or may not have good support at home, are in a friendly, welcoming, supportive, and protective environment. The organizers have completely embraced this aspect of the community that’s formed around Boat. There’s a Code of Conduct. This year we had moderators on Twit-Arr because of something that happened last year (in any group of people, there’s always That One Person who has to make a mess. It’s unfortunate, but I’ve been involved in enough organizations in my life to accept that this is just a fact), and it looks like that did its job well.

This is a place where Mr. Fred Rogers is something of a patron saint.

I’ve hinted at some of this here before, but there were a few occasions in the first stages of my treatment where I went to a very dark place, and I was figuring out how to end it, that I couldn’t see any value in continuing, that I’d become a burden to family and friends who would turn their lives inside-out to help me, but really had better uses for that energy helping themselves.

At some key moments, I’d hear from a Boat Friend — and I include the organizers in this — and that little bit of contact, that little reminder that people far away care about us and want to help us any way we need, that hug sent from the other side of the world, well, it pulled my fat out of the fire.

I’ve been sending notes and DMs and emails to these folks, thanking them for their messages, for being there, but for a few, there was more that I felt best needed to be delivered in person, face to face.

And thus did I lose it when Thera and I hugged there in the terminal.

Before we even got on the damn boat.

And we got on the boat, and made our way to our cabin, where we expected to find the electric scooter we’d rented for Kim (see previous mention about saving energy for something more important than just walking back and forth between places and add in “something more stable for when the boat gets particularly boaty”), and it wasn’t there. Kim pulls up her confirmation, it says “delivered to cabin”, but a bit later on, also says “pick up and return to kiosk outside the terminal building.” Phone call is made, it’s at the kiosk we walked past on the way in.

Grr.

Kim and I gather our passports and such and make our way back to the gangway, back to the terminal, through the terminal, and to the kiosk, where she collects the scooter, then we have to go through security again, and show our passports and key cards to EVERYONE because we’d already checked in and gotten aboard, and then we were finally on the boat and could commence with the vacationing.

We went to get some lunch, and ran into our friend Sara.

Sara is one of the people who saved my life last year. She did it with a postcard, of all things, just after last year’s Boat. And I now got to tell her that and thank her. What was said will forever remain between just us.

So far, this “leaning into it” thing was working *great*. I’d cried 3 times before we even got to the lifeboat drill.

These were not sad tears, I need to point out. Oh, no. We’d made it. We were on Boat. We were doing the thing. It was already glorious, and we hadn’t even untied from the pier yet.

After the lifeboat drill, there’s a Helper Monkey meeting. I make my way to that space, and as I’m walking in, there are my friends Sparks and Zaps McGee (names changed here because Reasons), who came there looking specifically for me. More hugs, more tears.

Then the Helper Meeting happened…

…This is pushing 2500 words now, so I think I’ll break this Njorl’s Saga thing up into some chunks. There’s just so much to digest and get through.

Stay tuned for “That Time I Went Back To Boat, Part II: Electric Boataloo” and further entries.

The Boat Saga:
That Time I Went Back To Boat, Part I (this post)
That Time I Went Back To Boat, Part II: Electric Boataloo
That Time I Went Back To Boat, Part III: Revenge of the Sith
That Time I Went Back To Boat, Part IV: Mockingjay, Part II
That Time I Went Back To Boat, Part V: JoCo Cruise and the Order of the Phoenix

I’m not on a boat yet, but Soon(TM) we’ll be on Boat.

Okay, so since my last post, I’ve gotten through one 2-week regimen of the oral chemo with no noticeable side effects (YAY). the off week, and I’ve started the second 2-week round. I’ve also had appointments with MD Anderson’s supportive care folks and the first of what will be regular off-week blood work and oncology consults, this week with another of the PAs. I’ve had questions, and gotten a few answers. I’ve started using a new style of colostomy bag that is actually the right size and shape for my ostomy area.

And I’ve worked, trying to work my hours back up to “full time” status. I’m not there yet, but I’m working on it.

And tomorrow evening, we head for the airport, then to Ft. Lauderdale, and then on Saturday, it’s JoCo Cruise time!

So, the chemo. Not much to report here. I get a bottle with 112 500mg pills in it. I eat breakfast, and take 4 pills with a bunch of water or equivalent. I eat dinner, and take 4 pills with another bunch of water or equivalent. I do that for 2 weeks, then take a week off.

So far, at least, I’m not seeing anything problematic with this. We shall see if this changes as I keep at it for a while.

The visit with the supportive care folks was because I was diagnosed (it’s even on MyChart!) as being in the “anger stage of grief” after the visit with the surgeon. I had to chuckle at that, but the thing is, yeah, I’m angry at this thing. I have been since shortly after diagnosis. I know this, I recognize it for what it is. I use it, mold it, shape it, and channel that energy into solving the problems that come up when you’re diagnosed with this stuff.

It was scheduled for an hour. Five hours later, I finally was able to head for the office and get a little work in.

They were very focused on my pain levels, but the thing is, that’s the LEAST of my concerns. Yeah, my back muscles are still a major mess because my abs are still an even bigger mess and the back muscles are having to do more of the work of keeping me upright, but on a standard hospital 0-10 pain scale, what they consider a 7 or 8 is my everyday 3 or 4 in terms of the impact on my operating status. This is something Kim and I have in common, and we both have the same outlook: there’s no real point in curling up into the fetal position and whimpering, because we’d never get anything accomplished.

Once I got them past that, we discussed my concerns about my care — that I felt like I was getting a bit of a brush-off, that my case isn’t weird enough to keep MDA’s attention, and I feel like a lot of decisions are being made about my care without talking to me about them. And also if the referral to a palliative care specialist is a hint that I’ve been deemed to have a best-used-by date that they haven’t bothered to tell me about.

I didn’t have any expectations that they’d be able to fix the communications issues then — I just wanted my concerns on the records. They did, however, assure me that this wasn’t a prelude to hospice or anything like that. MDA apparently does this total-patient-care thing by default. Kelsey-Seybold had these resources available to me, but it was opt-in. MDA is opt-out. I’ve got a follow-up on the calendar later in March, and I’ll keep going.

I meet with a nurse, two doctors, and a counselor. She (the counselor) was sneaky: she got me talking about positive things going on in my life, and suggested that I have a lot of good things happening and maybe I could look to those things instead of focusing on the stuff I hate about this (like the ostomy). Very clever.

Jump forward to this past Monday, when I went in for bloodwork and to see another of the PAs in the colorectal oncology department. That actually went pretty well. She was able to answer my questions about why we’re only doing the maintenance chemo now that surgery is off the table, instead of hammering what’s left of this stuff and THEN doing maintenance.

The short version is that while my cancer has been very responsive to the FOLFOX regimen, the Oxypalatin part of the cocktail is the Big Bad and does a number on other parts of me, as evidenced by the hemoglobin and platelet issues I had during the big chemo infusions, so they want to give my body a bit of a break and let it recover. Also, they don’t want the cancer to get used to the FOLFOX and maybe become resistant to it, which would require a switch to FOLFIRI or another regimen. And the third reason is to see how it responds just to the 5-FU — it may well be that it will keep shrinking the cancer.

She also went into some of the reasons to wait to get me onto a clinical trial until it’s in the later stages, chief among them that a lot of these immunotherapy trials are one-shot deals — when you get one, that’s it, and thus they’d rather have a better shot for me, especially since my stuff is responsive to existing protocols. Colon cancer is particularly tricky for immunotherapy, since it’s very good at hiding from the immune system.

Speaking of good things, we’re heading out tomorrow for Nerd Boat, as the JoCo Cruise is sometimes known. Don’t expect really good IT support next week, ’cause a lot of the pros will be on Boat. Regular readers will recall that we had to miss last year’s Boat because I was hors d’combat after surgery. We’ve had a hell of a couple of years, and Kim and I both have proclaimed we need Boat many times over the year.

We’re getting Boat.

Of course, I’m packing ALL THE POO BAGS. The last thing I want to do is to run out of poo bags in the middle of the Caribbean. Or especially during the They Might Be Giants set on Wednesday night.

One of the features of JoCo Cruise is the “shadow cruise” – activities, performances, etc., by regular ol’ cruisers. Well, this year, I’m hosting an “office hour” type discussion about what I’ve been through (and yes, probably poop). It’s the first time I’ve done a shadow cruise thing, and, well, the first time I’ve had a reason to. My goal for doing this is to only have to tell the story 1750 times instead of 1800.

And I’m back in the Helper Monkey saddle (for non-JoCo Cruisers: Jonathan Coulton has a song called “Code Monkey”, so of course the cruisers named themselves Sea Monkeys, and those of us who have stepped up to help things run smoothly, like the ConCom at a science fiction con, are Helper Monkeys), which is just one of the fun things I like doing.

By all of the FSM’s Noodly Appendages, we need this. The car service shows up tomorrow after work, the pups are going to day care, neighbors are lined up to keep an eye on the place, and when we hit the road, someone else will have to deal with the unholy union of normal Houston rush hour traffic, IT’S SPRING BREAK!!!!! amateur hour, and the annual influx of Houston Rodeo tourists.

I hope I’m bringing enough poo bags. Just writing that paragraph up there makes me think I might want to put another box in the suitcase. Just in case.

Processing time is important.

Okay, so this is getting written because I’ve already gotten a LOT of questions and rather than copy-pasting the same response into a whole bunch of DMs, I hereby designate it a FAQ and give it its own post. 😀

Q: So why the discrepancy between my original surgeon’s opinion on my chances and the MDA surgeon’s opinion?

A: I think there’s a combination of factors involved. One is institutional differences between MDA and Kelsey-Seybold. This drives what is considered an acceptable reason to open someone up and the intended outcome. Another is the difference between the individual surgeons, which is interconnected to the institution to some extent, but there’s more than just that in play. And another is the level of acceptable risk.

I took a little time to process what I heard yesterday, and while I’m still unhappy about it and frustrated that I’m not getting rid of the colostomy anytime soon, I have a better understanding of where he’s coming from.

Essentially, the driving philosophy at MDA is all-or-nothing on surgery (except for immediately life-threatening things), and thus they’d want to get not only the primary mass in my sigmoid colon, but all the mets. And my case is a lot of mets. A. Lot. Of. Mets. The liver is just a bonus complication to having most of the lymph nodes on my aortic column involved, plus a couple bonus ones up under my collarbones (and thus not even in my abdominal cavity). And as the surgeon pointed out yesterday on the CT images, the involved nodes are tucked up near some mission-critical stuff like my aorta and vena cava (just the two primary blood flow paths in the body, for supply and return, respectively), behind one of the renal veins, etc. Just getting access to those is rather difficult, and, as Kim points out, his concern about causing a leak may not just be from a resection issue, but from nicking a major blood vessel.

So, a lot of risk. I understand that better now. I’m still not happy, but as I said last night, I’m not going to shop for a surgeon who’s less risk-averse. Most of my frustration is at the all-or-nothing philosophy at play — I never expected everything, just the primary in the colon, a resection, and no more colostomy.

Which brings me to the part b of this question: why was my original surgeon so confident? Well, attitude. As I’ve previously described, he’s got that gung-ho, fighter pilot attitude. He’s willing to go cowboy. And — this is key — I think he wanted to do it as a make-good for not being able to do it originally (because my innards were an even bigger hot mess then. All the dumpsters were on fire). And he had no intention of getting all the nodes, just the primary. There’s a good chance he was downplaying the risk, too.

And so it is. Thus endeth the FAQ section of today.

I got up way too damn early again today and went back to MDA to meet again with the ostomy nurse. This time it was productive as she had an idea of why I’d been sent to her. It looks like I’ll be getting some different equipment better suited to my stoma (I utterly and completely refuse to name it. I *almost* called it something just now and quickly backspaced and typed “my stoma” instead. There may come a day when I do, but today is not that day. No, I don’t need suggestions), and I’m trying one out now. (ETA: The semi-rigid secondary adhesive ring on this two-piece setup makes it very difficult to do the rinse-out slosh. So there’s that. Also, transparent bags are gross, but that’s all they get for samples at the hospital.)

And hey, this means poop posts will continue for the indefinite future. I might even finally put together the definitive guide to poop types for colostomy patients. And I think I have an ilieostomy (an ostomy that provides an exit where the small intestine connects to the colon, where my colostomy is near the end of the colon) patient (well, a former ilieostomy patient, since they got a reversal) lined up to guest-blog what that poop is like, so we can cover the bases.

Meanwhile, I’ve now taken dose 3 of the oral maintenance chemo. So far, so good. Not noticeable side effects yet. I’m okay with this, but we’ll how the full 2 week run goes.