Control

The physical aspects of cancer treatment and recovery are one thing, but then there’s the psychological part. For me, that means relinquishing freedom and control. Cancer had taken control, and those who would cure me were wrestling control from the Big C. All I could do was go along, follow instructions, submit.

It all came to a head yesterday. I’d been in the hospital a week and the seemingly constant parade of medical people drawing blood, taking vital signs, asking questions, changing IVs, giving instructions, dispensing meds, drawing more blood, and on and on had used up my supply of tolerance and patience. I lost my cool and snapped at a nurse, demanding to be left alone for a few uninterrupted hours. And it worked. They even posted a sign on my door to not disturb until a certain hour.

Then, on the way home from the hospital, finally with a little autonomy to look forward to, I got a call from the chemotherapy place telling me I had a new hydration appointment for later this week. AAAAaaaargh! Give me a fucking break!

The single greatest thing about my nomad life is the ability to run my own life. No one’s agenda to serve, no one I need to please, no one’s schedule to keep or permission to ask. I had retired from all that, escaped it, and lived very happily to tell the story. But the past ten weeks…? All of that had to be surrendered. And it has been exhausting, demoralizing.

Today Ceebs helped talk me down, reminding me the things they want from me were only to heal me as quickly and completely as possible. Yes, of course.

I had imagined hitting the road again in a couple of weeks, after the last meetings with the doctors, and not returning until after Thanksgiving when they’ll do a PET scan and other followup work. But that’s probably not going to happen so soon. I’m adjusting to that reality, accepting it.

I’m alive. I’m feeling better. That’s enough for now.

Out of the hospital, back in the real world

Ah, the land where they don’t come to take your blood at 6 AM

The news

Just got a call from my radiation oncologist. Tomorrow is my last radiation treatment. I asked, "Okay, then what is the status of the tumor? He replied, "It's gone." I check in with him in a week to see how recovery from the side effects is going and to make sure I have self-care humming along. Then I return after Thanksgiving for a PET scan to see if there are any developments. Then again every three months for a while. If it weren't for the side effects, treatment was pretty much a walk in the park. A tedious, repetitive walk in the park. In my case. So it wasn't one of those classic movie/TV scenes with everyone gathered in the doctor’s office with him (it’s almost always a him) delivering a nail-biting preamble before pronouncing the good news, but it's the good news nonetheless. (Fists in the air!)

Meawhile

Lou has insulated the walls and put up the panels, which will be stained and varnished. The bathroom is in the corner, with the toilet in the far corner, the shower next to it and the sink in the righthand corner. The kitchen will be to the right of the bathroom. Hot water will be supplied by an on-demand heater. And the place will be heated/cooled by a mini-split unit. Lou believes his casita is so well insulated that his heating and cooling power use will be minimal.

Comfy

I’ve discovered the second-most comfortable mattress in the world. (The one in the Rolling Steel Tent is first.) It’s also probably the most shockingly high priced bed. It’s my hospital bed: the Stryker IsoAir. It’s a heavy duty, high tech air mattress.

Deep Cell Design 

IsoAir support surface is comprised of a series of air-tight bladders that run laterally across the mattress to provide patient immersion and envelopment. 

Therapy Modes
Designed with both pressure redistribution and alternating low pressure therapies to assist in protecting patient skin. 

Active Sensor Technology
Automatically adjusts pressure within the air cells to help control immersion for the patient to a specific depth.

Too bad I had to get sick to discover it.

A different kind of #vanlife

Radiation treatment is in a different building, so they packed me into an ambulance and drove me over there. Along the way I kept thinking how easy it would be to convert the ambo into a nomad home. Lots of headroom, nice cabinets, and horns that would really get drivers out of your way.

Too late for me

My friend Forrest sent me the link to a Denver Craigslist ad. If it were 2013 and I hadn’t already bought the Rolling Steel Tent, this is what I would’ve purchased. The seller is even asking less than what I paid.

Chevy box truck, aerodynamic nosepiece, barn doors in the rear. I looked at similar ones at a U-Haul lot, but they didn’t have the nosepiece and the rear doors were all roll-ups, which cut into headroom and are hard to make weathertight. And slightly longer ones had dually rear axels, which I didn’t want.

So if you’re vanless somewhere in the Denver region, you should check this one out. It could make a sweet home.

The latest

About 3:00 Tuesday morning I woke to strong shivers that carried on for about an hour. 

When I finally dragged myself out of bed at 9:30 I was exceptionally weak and unsteady on my feet. I figured this was all from by dangerously low caloric intake the past few weeks.

Ceebs drove me to my radiation appointment and I had her procure a wheel chair. I was fairly certain I wasn’t going to be able to make the walk.

I saw the doctor (two doctors, actually) after treatment. My temperature was 106°.  They were certain I had some type of infection. The quickest way to get a battery of tests run was via the ER. So they and my chemo doctor called ahead to UCLA’s ER in Santa Monica (of which they had a higher opinion than the one in Westwood).

In the ER waiting room. Woo! Fun!

They drew about nine vials of blood, some urine, and a couple of mouth swabs, moved me to a private room to lessen exposure to infection.

They loaded me up with painkillers and antibiotics. Also Tylenol to lower my fever. I didn’t know it was good for that. My temperature was down to normal within a half hour. 

I slept well.

Good morning

This morning I feel better—sort of pre-fever & chills cancer patient me. I await test results. I hope I get a passing grade.

Meanwhile

Lou says most of the exterior is done. He just needs to do the porch and steps.

The roof required some neighborly help. And the neighborly help required the neighbor to actually show up.

Brunch with O

Friend, former workmate, and beautiful soul Ophelia was in town from Boise. She met with Ceebs and I for brunch and conversation at Mama Lu’s Dumpling House. Well, she and Ceebs brunched while I wrestled with my digestive tract. The food looked good, anyway.

Making the call

My friend Sherita has been battling health problems since winter and it has severely impacted her ability to live independently, to live like a nomad, to live like the strong woman she is. It’s the type of thing that makes me sad, especially when I’m in no position to be there and help, to wave a magic wand, or to at least give a hug.

Technology can bridge the gap, though. We talked this evening via Facebook Messenger. Voices can convey so much more than text. It was comforting, soothing for both of us.

Another way to do it

Sage advice

At least I kept the eyebrows

It was haircut time and I figured, eh, might as well take the whiskers too.

Want a dog?

Every nomad needs a dog, right? Every dog needs a home. And travel. And open spaces.

Well, a friend of Ceebs has been fostering a sweet dog and wants to find a permanent owner for it soon. Here’s a flyer she did.

Contact the South Los Angeles Shelter at (888) 452-7381 or (213) 485-0303.
1850 W 60th St
Los Angeles, CA 90047

Go to this link to learn about fees and adoption policies.

Field trip

In all the years I lived in Southern California I had never visited the Watts Towers. So I was up early and on my way before there was too much freeway traffic.

I knew beforehand the grounds were closed because of preservation and repair work. I didn’t now that much of it would be covered in scaffolding. But of course. Still, it was cool.

The most unexpected thing was the security guard—a Latino Jew, wearing a yarmulka and blowing a shofar to welcome the Sabbath morning. I love LA.

Bye-bye 5-gallon bucket

I’ve become so accustomed to having a proper toilet that squatting on a bucket now seems disgustingly primitive (again). So now I have this to tow along on my eventual return to the nomadic life. I’m going to try and rig a shower in it, too.

Okay, for those who might think I’m serious, I just happened to park next to it. It’s for the paving crew.

If you can’t save it, shave it

Aw man, I wanna get back out there

Craig Childs wrote a wonderful article about solitude, floating the Green River, and Aron Ralston cutting off his trapped arm. I really miss that part of the country. I also really miss solitude. Soon, baby, soon.

Patchy

Cancer treatment hair loss has begun. Not that I ever had a thick beard to begin with. Ceebs noticed it first. She said it happened almost overnight.

Heave ho

I finally have an answer to the question, “What will happen if I vomit while I have a tracheostomy tube?” In this particular instance, it was the same as if it wasn’t there. It was no fun, but nothing was inhaled except air. The epiglottis did its job.

Losing on purpose

When I shop on eBay I usually avoid auctions and go for the buy-it-now choices. One reason is I don’t want to invest time tracking the auction and making bids. Another reason is an article I read a few years ago that said auction winners pay too much. That claim is based on the idea that things are worth only what someone is willing to pay. If you win the auction it means all the other bidders thought the price is too high. Sure, you might still get the item at less than market price, but that just means the market price is also too high. And, yes, the buy-it-now price might also be too high, but at least I didn’t need to fiddle with the auction process.

So, the other day I went looking for a replacement for my nearly obsolete phone. I had read a lot of reviews and watched several user videos. I made a choice and found a handful of used ones on eBay. But they were all at auction. Okay, okay, I’ll bid on one, despite my aversion. Then I was out-bid. So I raised my bid, and it stuck for the rest of the day, with four days until the end of the auction.

Later eBay sent me an email pointing out other offerings of the same phone. One had a buy-it-now price lower than my bid on the other phone. Rats. Was there a way out of the auction? I couldn’t find it. I could only wait to be outbid, to “lose” the auction.

So I waited. And waited.

Finally someone bumped up the bid. Thank you, whomever you are, for allowing me to lose.

UPDATE: The winning bid was way over what I was willing to pay.

Data hog

Out on the road I had to be mindful of my data usage. I have an unlimited plan, but speed is throttled after I use 22GB. So I had to be as certain as possible I really wanted to stream a video. I often stopped watching so-so videos after a minute or less to keep from wasting those gigabytes (any further).

But the wifi at Ceebs’ place has no limits. That makes me more willing to take viewing risks. Yet I still feel guilty watching things that are only slightly interesting, or for sitting through the blah parts between the good stuff. I should be clicking off and saving data for more worthy things.

I wonder what will happen when I’m back on the road with my limited unlimited plan. How long will it take me to become my old data-conscious self?

Shake up

Even with earthquakes, I still love California.

Capped

The past week it seemed I was breathing almost exclusively through my nose, not the tracheostomy tube. So I’m experimenting with capping it off. So far, so good. Maybe I can convince the doctors it’s time to remove the tube and sew me back up.

There’s no app for that

This post is inspired, in part, by someone on a nomad forum musing about extremely portable sources of electricity for way-off-grid living. He wondered what it would require to charge the batteries for his cordless tools. My reaction was that if he really wanted extreme portability he should eliminate the electrical tools and go with good old human-powered ones.

Back in the 50’s my father finished our unfinished tract house basement—new stairs, two bedrooms with built-in cabinetry, a bathroom, a laundry room, a laundry chute, a food and supplies storage room, and a recreation room with a table that folded out of the wall—all without power tools. Not even a circular saw or drill. Here I am, sixty years later, whining to myself when I have to use an ordinary screwdriver instead of an electric one. Waaaaa! So much wrist turning! Woe is me!

We live in a time when we expect everything—including thinking—to be as labor-free and painless as possible. But being a nomad means living as lightly and as uncomplicated as we can. Those two goals are often at cross purposes.

I’m not sinless in this regard. I have a refrigerator and the solar equipment to run it. I could’ve changed my diet to only things that don’t need refrigeration, but I likes my cold beverages. A lot. And I like my computer, and my phone, and my camera. And my fan. And my cordless drill. I’m not a Luddite. I just consider the costs—monetary and otherwise—of my conveniences. Does saving labor here require more labor elsewhere? Ain’t no free lunch. Especially if you want a cold drink with it.

Besides, you can’t make sweet, spooky music with a power saw.

Now it’s the tastebuds

All sorts of favorite flavors are starting to taste awful. Some taste caustic. Savory foods, especially. (When did black bean soup turn to acid?) Some foods just taste incredibly bland. The chocolate protein shake is still drinkable, though.

But at least that feeling of having a piece of glass stuck in my uvula is gone. At the moment.

Shortcut

With chemotherapy each Thursday and hydration each Monday, I have IV’s taped to my arm—and arm hair—often enough that it made sense to get out the clippers and mow my forearms. I predict it will become the next big male grooming trend. Or not.

Wait, this is not a hospital

Santa Monica State Beach

And one step back

They had said the effects of radiation therapy would start to make themselves known after about two weeks. Sure enough.

During Friday’s session I noticed warmth for the first time. I asked if they had changed the dosage. They hadn’t. Later my mouth and throat felt scalded. It didn’t ease up Saturday. Eating solid foods was painful. Sunday was only slightly better. Monday about the same. This morning it feels like I have a splinter of glass where my uvula should be.

I’ve also noticed my teeth are loosening. My gums have shrunken. Will they eventually return to normal? Will I start losing teeth?

It’s disheartening. But I’ll push on.

More or less?

I was rummaging around YouTube and kept running into videos by young adventure-seeking nomads. Mountain biking, kayaking, rock climbing, hang gliding, pushing the limits. The GoPro people.

A little later I got an email from my friend Vanholio!

It’s funny. When I set out 4 years ago, thought I’d be criss-crossing the USA—maybe Canada and Mexico, too—seein’ everything… 

All I want is comfy weather, quiet, good internet, no neighbors, a pretty view, a nice walk, few bugs, and maybe a top-grade breakfast burrito or Chinese buffet once in a while. And my coffee. And Ms. Barkley curled up beside me. The simple life. 

Imagined a life of adventure back then and found a life of easy contentment instead.

Yup, those are the two poles of the nomadic life. Living hard versus living easy. It’s probably an age thing. But it’s a personality thing, too. I’m one of those who finds happiness in a decluttered existence. Aaaaah, look at all the things I didn’t need to do today.