Sunday, August 25, 2019

Marking my calendar

I’ve been to the Neon Museum in Las Vegas. Very cool.

And I’ve been to Sparky’s in Hatch NM — a burger joint decorated with large advertising figures like the A&W Drive-In family. Also cool, with the added benefit of good food.

I stopped to visit with Miss Hubcap Capital of the World in Pearsonville CA.

I’ve even waved at Big Boy in a pasture near Wapiti WY.

Then today I learned about Bell Plastics, a company in Hayward CA devoted to making new advertising statues, often called Muffler Men, though not all the statues are men or even human. Once a year (like last week) they open their facility to visitors. I want to be there next August.

Saturday, August 24, 2019

Wait, am I in Canada?

English and French on the package, but no Spanish. Metric measurements given priority in the listings. This ain’t no US market package, yet I bought it in California. At least I think I’m still in the US. Maybe I’m not and it’s all a freaky side effect of radiation therapy.

UPDATE: Oh, wait, I just figured it out. Someone at Charmin got confused and shipped this TP to La Cañada, California, north of Pasadena.

Hemmed in again

In the winter I usually hunker down in the border desert. Toward March I get restless and want to hit the road again, but the weather reports show disgustingly cold or wet weather all around me.

Now the flip side of that. I’ve been hunkered down in Los Angeles most of the summer but I’ll be able to return to the road in a couple of weeks. I’ve been checking the forecasts again and I’m surrounded by hellishly hot weather in nearly every direction.

Sigh.

No news, good news

Nothing to blog about this past week. I’ve just been relaxing, recovering and watching a lot of model building videos. (It used to be my big hobby.) My weight has stabilized, I have more energy, and my throat hurts considerably less. I have an appointment for the 5th to have the trach tube removed. Then I’ll head out on the road until the first week of December when I return to LA for a PET scan.

Oh, about the weight thing. I lost about 40 pounds the past few months. I’m under 200 pounds for the first time since, oh, high school. I’ve had to do a little clothes shopping. Pants are down from a snug 38 to a roomy 34, almost 33. T-shirts are down from 2XL to L. We’ll have to see how long the smaller self lasts.

Sunday, August 18, 2019

Meanwhile

Lou has been making progress on kitchen cabinets and a closet. He teased me, saying the countertops will be something special. I guess I’ll have to go back in order to find out.

Continuing with the luck theme

It’s a rare and beautiful thing to work at a job you love with people you really like. I was lucky enough to have that for part of my career. It’s equally rare and beautiful that you still enjoy each other twenty to thirty years later.

When a friend/coworker learned I was in Southern California getting cancer treatment, she put together a combination celebration of my recovery and company reunion. I’m not much of a party goer, but there was no way I was going to miss this, even if it hadn’t been in my honor. It was an excellent gathering.

That’s the former CEO in the middle of the photo. Last night he said, “I wanted to make it the type of company I would enjoy working for.” He succeeded. I replied, “There were two things that meant a lot to me, and that I never got anywhere else. Acknowledgement of my value to the organization, and the reciprocation of loyalty.” We hugged.

Thursday, August 15, 2019

More vanlife reality

As I’ve said many times before, I’m lucky. I found a life I love and it’s working for me. It doesn’t always go so well for my fellow nomads. Their dreams become nightmares.

Chris Wright tells the story in Outside of the months he and his fiancée spent traveling the country in a van. As in the article I shared before, their intent was to live the van life in an anti-#vanlife way.
There was an important caveat. We decided to reject the cushiness of #vanlife and skip the saccharine Instagram posts. This was partly out of necessity—we didn’t have the budget for a $10,000 vintage van and a $10,000 overhaul. But we also feared the Instagramization of our lives, seeing the mountains through the lens of our camera phones. I rolled my eyes (though secretly a little jealous) at the shirtless #vanlife guys whose long captions detailed the importance of learning how to fix a timing belt with a shoelace. Rachel damn sure wasn’t going to sit naked on the roof of the van for a photo shoot every few sunrises. Social media of any kind was officially banned. 
We decided, instead, to take the path of the van bums: the transients, the weirdos, the indie bands with no money.
Though their intentions were pure, the reality was harder than they expected, harder than they were prepared for.

Their first mistake was buying an unreliable van. Their freedom machine became an anxiety generator. What would fail next? Would they become stranded? And, because their second mistake was underestimating their expenses, could they afford repairs?
If I was obsessing about a breakdown, I was also fixated on money and the way it seemed to flow through our wallets like water through a sieve. Living out of a van can be surprisingly expensive, especially if you’re burning through gas on long drives every couple of days. I had underestimated our costs. Working would mean stopping, extending the trip, spending even more money. I kept thinking about the saying “so poor you can’t keep mosquitoes in underpants.” I only had three pairs. We didn’t need much to survive. But the list of things we could afford was shrinking fast. I was sinking into despair: over van noises, over dollar signs, over anything and everything.
I’m not posting this to discourage aspiring nomads. I mean it only as a reality check and to stress two important points. 1) Get the most reliable vehicle you can find and afford. 2) Have a continuing source of income.

Like many people who go on a journey to discover the country, Mr. Wright also discovered some things about himself.
Here’s what living out of a van was: a massive stretch of raw adventure and also an earthquake, destabilizing my life, showing me I didn’t really know all that much about risk, privilege, happiness, failure, and my own mental state.
Keep your dreams, nomads-to-be, but also keep your head on straight. And hope for luck (although luck is not an emergency plan).

Tuesday, August 13, 2019

In a video making mood again

That wasn't horrible

I must’ve been feeling strong this morning. I called Social Security to change my address. Right up front the recorded voice said it would be about a twenty-minute wait. I could do that.

Twelve minutes later I was talking to someone. And in a couple of minutes it was all done.

Yes, I could’ve done it online, but I couldn’t remember my password, or whether I’d ever set up an online account in the first place. At least I didn’t need to go to a Social Security office in person.

Saturday, August 10, 2019

Real #vanlife

Some days you click on one of your favorite sites expecting to read about cars and instead discover an article about your own life.

Young writer Anna Merlan and photographer Tod Seelie set out on a road trip to discover the gap between the Instagram #vanlife image of nomadic living and its more common reality. The story starts with them sweating to death in a Phoenix parking lot. Not glamorous.
You won’t find these realities on Instagram, of course. In the past few years “vanlife” has become a bona fide social media phenomenon, a way for beautiful, mostly white, mostly heterosexual couples in Sprinters and Volkswagens to #partner with #brands to make a living selling a pristine, minimalist, aspirational lifestyle of sunrise beach yoga, morning acai bowls and romantic nights with two pairs of feet on the mattress facing towards some beautiful sunset mountain view or a lightly photoshopped sky full of stars. (Vanlife is now so popular that whole accounts exist to re-post vanlife photos from other vanlife accounts, usually hashtagged with robotic enthusiasms like “#couplegoals” and “Looks so cozy!”) 
...This is, of course, leaving aside that the beautiful heterosexual whites in their expensively-converted Sprinters did not invent “vanlife” or, more broadly, life in a van. Traveling by RV or van is a fact of life for a lot of people who earn their living through seasonal, migrant labor, as Jess Bruder’s exquisite book Nomadland chronicles. Living in a car is a reality for many, many homeless adults and children throughout the U.S., a reality often complicated by laws that deliberately make it hard for them to park anywhere for too long. And even that leaves aside that self-expressed Vanlifers who aren’t white face a particular host of challenges, hostility and harassment on the road.
I nodded in recognition as I read. It’s very accurate. You can learn a lot from only two weeks on the road—if you’re looking for the truth rather than trying to live the myth.

Tuesday, August 6, 2019

New and improved

I got years of excellent service from my GSI Glacier Stainless Toaster. But the wire screen on the bottom eventually succumbed to the propane and butane flames.

I had purchased old faithful at a camping/backpacking store near Ceebs’ home in Los Angeles, but when I returned for a new one they no longer sold them. So I resorted to Amazon. And ordered two. Gotta plan for the future, even in the middle of cancer treatment.

Wow, the current version is more substantial than the old one. Heavier gauge metal, thicker screen, and there are now solid metal strips on the ends of the mesh. Yet the price is the same. Thank you, GSI. Even if it turns out the improvements don’t extend product life or make better toast, at least they’re trying.

Monday, August 5, 2019

Short reports

Yay, I’m slightly better than average

I had checkups with my two oncologists today. I was certain I was going to get lectures about my condition, but they were pleased with my progress. They said I looked surprisingly good (internally and externally), considering where I am in the whole recovery cycle, and that it would be at least another week before I started feeling an upswing.

- - - - - - - - - - -

Taste test

Some of my sense of taste is returning. Ceebs made a banana and mango shake for me and, surprise, I could actually taste the banana.

This morning, on the way to my appointments, Ceebs got an Altoid for herself. She offered me one. Okay. It tasted like… absolutely nothing. But then there was a hint of minty vapor in my sinuses.

“This is a good test,” I said. “It’s something with a very strong, very familiar flavor. Each Altoid is identical, so the thing being tested is consistent. I can judge where I am on the Altoids Scale. I'm certain it will become an official standard soon.”

- - - - - - - - - - -

Getting blood from a stone

Weekly blood samples and chemotherapy infusions had left both my arms well punctured. The backs of both hands as well. Then daily antibiotic drips and twice daily blood sampling while in the hospital really taxed my available blood vessels. Today they wanted blood for weekly analysis. A couple of hours later a different group wanted blood for the clinical trial I’m involved in. It took four attempts among three nurses to finally hit blood.

Sunday, August 4, 2019

Fever dreams (without the fever)

Whenever I’m ill I have short, obsessive, repetitive dreams that continue on when I’m partially awake. When I’m fully awake between dreams I sometimes have a hard time judging whether the dreams were about something real or just 100% crap my brain concocted to torment me. When I go back to sleep the dreams return and the cycle restarts.

Last night the dream had me believing there was only one correct, medically approved sleeping position I had to maintain in order to heal properly, to heal at all. And I couldn’t find that position. Or I’d find the position but it would be uncomfortable and I couldn’t maintain it. Between dreams I couldn’t tell whether the one-position thing was fact or not.

After being awake enough to make a bathroom trip, I finally realized my head was just messing with me. But I didn’t sleep much better.

Wednesday, July 31, 2019

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.

Tuesday, July 30, 2019

Monday, July 29, 2019

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.

Saturday, July 27, 2019

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.