Dwell on this

I was web searching various offbeat Los Angeles museums. One museum has an exhibit dedicated to the development of trailer parks. The writeup of the exhibit includes the following:

As noted by J.B. Jackson in his The Movable Dwelling and How it Came to America, 

The verb to dwell has a distinct meaning. At one time it meant to hesitate, to linger to delay, as when we say, “He is dwelling too long on this insignificant matter.” To dwell, like the verb to abide (from which we derive abode) simply means to pause, to stay put for a length of time; it implies that we will eventually move on.

I’m a van dweller. Jackson’s definition fits me quite fine. I’m here, I’m pausing a while, then I’ll dwell somewhere else. Which is just a shorter version of the cycle of life.

Another month of this

Today is the month-iversary of my stay in Los Angeles. I spent most of the morning reviewing old posts, refreshing memories, vicariously reliving my years as a nomad. Sigh.

Meanwhile, my friends have been sharing their summer travels. Utah, Colorado, Montana, Oregon, Yukon, Alaska… Sigh.

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We interrupt this post for a little excitement and chaos. A squirrel got into the house somehow and couldn’t find its way out. It was unfamiliar with the concept of glass and kept trying to get out through a closed window. I opened the front door, propped the screen open and stepped to a neutral corner to wait. After another lap of the living room and dining room, knocking over a thing or two, it finally discovered the door. Peace and the natural order of things has been restored.

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So, I’m feeling a little down today. I miss traveling in beautiful places. I miss being healthy and independent. I feel the travel season ticking away. Four more week of treatment. Sigh.

Art break

At the Marciano Art Foundation

Cool product

The old question has been, “How do you install a vent on a van roof that has ridges? How do you make sure it doesn’t leak?” Up until now the answer had been kind of sketchy sounding, involving layers of butyl tape and a crap ton of sealant. But it worked.

Well, now someone has come up with a much better answer: a precision machined adapter designed for your model of van.

Patent Pending adapter matches the contour of the OEM roof so a standard RV style vent mounts to a flat surface.  Prevents distorting the roof sheet metal or vent flange and can be used as an aid for locating the fan. They are CNC machined out of UV and fire resistant expanded PVC. The fan mounts to the outside adapter.  Fan adapters work with the Maxxfan Deluxe series and the Fan-tastic Vent fans.

This would’ve saved me a lot of anxiety if it had existed back when I installed a vent fan. But how did it come to exist? Was an enterprising, creative, engineering type person converting a van? Has #vanlife reached some type of critical mass?

I'm missing meat

My liquid and soft food diet is starting to mess with my mind. Last night I dreamed I was eating barbecued brisket. It was so real. I could actually taste and smell it. Juicy, fork-tender, a little peppery, charred edges… I almost cried when I realized it was all just a dream.

Fayth, hope and charity

Sometimes, when we’re moved to help someone, there’s only so much we can do. Sometimes there’s a limit to what they’ll let us do. But we try.

Here’s a link to my friend LaVonne’s story of trying to help a barefoot woman by the beach.

I first saw her from a distance, a lone figure standing in the middle of an immense, nearly empty, dirt parking lot on the north bank of the San Diego river, not far from where it emptied into the ocean. The tide was exceptionally low, so that the woman could walk across the channel to Dog Beach, if so inclined. 

But she wasn’t. She just stood there looking away from me as I slowly approached in my van. She seemed to be waiting for someone, searching for sight of a car to come pick her up. Maybe they were supposed to meet, and the other party was late...

All the poop

Sooner or later a van dwelling blogger will write about how they go to the bathroom when they don’t have plumbing. This isn’t one of those posts. This is about not being able to poop. So if you don’t want to read about constipation, this is your warning. Turn. Back Now.

Constipation is one of the likely side effects of my chemotherapy drug, Cisplatin. In my case, it hit hard. Not simply gee-this-is-a-little-difficult-to-squeeze-out constipation. I’m talking too-firm-and-large-to-ever-pass-through-a-normal-person’s-sphincter constipation. I’m talking put-on-the-surgical-gloves-and-poke-around-in-there constipation. This is despite a lot of stool softening medication.

After three hours of mostly futile work, exhausted, hurting, humiliated, I had Ceebs take me to the ER. The pros would know what to do. They probably had special excavation tools.

Business was light when I arrived. They got me right in and checked me out. When I mentioned there had been some bleeding earlier, they became concerned there might be a larger problem than a reaction to my meds. They took a stool sample. They drew blood and sent it out for analysis. They did a CT scan. When the scan also revealed I was also developing a kidney stone (a tiny fleck of gravel in my urinary tract to go along with the rock in my rectum), they wanted a urine sample.

Everyone was nice. Everyone was sympathetic. A CT tech asked about my tattoos. An elderly volunteer doted on me, insisted I take an extra blanket. Then I waited. I watched the comings and goings of the now busy ER. A car wreck victim, a woman screaming with labor pains, a dude in police custody… I knew I was a low priority. I waited some more.

I made a few trips to the bathroom. Some of the newer poo was sneaking around the lump.

Finally, the word. No poop scooping for me. Just some stronger medications to use in the “comfort and privacy” of my own bathroom. And an invitation to come back if the problem persisted. And a recommendation I talk with my chemo doctor about adjusting my dosage.

So, as I write this, I’m back to waiting. Will the stuff work? How well? When?

Not what I feared

As I’ve said before, humans are not all the same, cancers are not all the same, so treatments are not all the same and side effects are not all the same. Therefore, my experience is not representative of all cancer patients’ experiences.

When I first learned I had a stage 4 tumor, I imagined a cure that was worse than the disease, a cure that was worse than death. Pumping poison into my body, hoping it killed the cancer cells before the rest of me? Bombarding it with radiation without destroying other critical functions (like my brain)? Did I want to go through all that just to die of something else, or a different cancer, in an unguaranteed number of years/months? Should I save myself the suffering and just end it all now?

Well, in my case, so far (that’s an important disclaimer), the most painful thing about chemotherapy has been the insertion of IV needles, and that’s just a brief ouch. I expected some sort of searing toxic pain as medicinal Drano flowed through my body. Nope. It felt exactly like the hydration fluid, exactly like nothing. No convulsions, no nausea, no whimpering in a fetal position as flesh boiled from my bones.

And radiation therapy was not like sticking my head in a microwave oven. Other than the press of the mask against my face, I don’t feel anything. And, most days, my irradiated throat feels better, not like it’s being seared in a space age charbroiler.

Generally, I feel like I’m going through prolonged bout of the flu. Sore throat, achey, tired, very slight trouble breathing. Oh, and with plumbing in my neck. That’s the most uncomfortable, inconvenient thing.

As I’ve also said before, I’m lucky. Very lucky. My heart goes out to all those for whom treatment is torture. They don’t deserve it.

Solid results

I needed a break in my liquid diet. I needed variety. The original plan was to walk a couple of blocks to McDonald’s and have some pancakes—perhaps the least solid of solid foods by the time they’ve soaked up butter and syrup. But I decided to turn the meal into an experiment. I ordered their full breakfast. Pancakes, eggs, hash brown patty, bacon, sausage and English muffin.

As expected, the pancakes and eggs were no problem.

Okay, what about the hash brown patty. It’s essentially soft potatoes with crispy edges. Would the crispy bits want to catch in my throat, irritate my irradiated tissues? Nope. no problem.

On to the sausage patty. Would the finely ground and reconstituted meat fight me? Nope, no problem. Cool. “Meat” is back on my menu.

But the bacon. Leathery and brittle. I pictured a cured and caramelized pork shard lodged between the tumor and my epiglottis, or stuck in my vocal cords. Chew well, chew some more, beverage in one hand, napkin in the other in case I start gagging, and… Okay, but probably not the best thing in my condition. I put the rest of the bacon aside.

That left the English muffin. Gluteny, chewy, with jagged carbonized edges. A sponge for mouth secretions, potentially wheat-pasting itself in exactly the wrong place. I took a small bite. Mmmmm, bread. When was the last time I had bread? I chewed and chewed and chewed until I figured I’d disarmed it. It went down well, but was the flavor payoff worth the work and worry? Eh, it’s a tossup. But it gives me hope that my dearly loved and highly craved bagel & schmear isn’t out of reach much longer.

Go bold

A while back I observed that most of my clothing is dirt colored. Do they still call those earth tones? That’s practical when living out in sticks, but it’s boring. So I bought a red t-shirt, then a marigold one. Yeah! That was more like it.

Then, since I’d be staying in Los Angeles a while, where deliveries are far less problematic than, say, the middle of a dirt pile somewhere, I did some online shopping. I saw an amazing shirt on Etsy. Patchwork African cloth. My size. One left. Seven people holding it in their cart. I beat them to the punch (or there was actually more than one left). Behold my walking strong and happy chemotherapy shirt. I. Am. In. Charge.

Maybe the shirt will startle the cancerous cells away

One of the nice things about Los Angeles is a guy like me can wear this shirt and get compliments instead of hostile looks. Hmmm, maybe I’ll start wearing my robe about town, too.

My thoughts exactly

Copycats

An anonymous observer/critic started noticing the same types of photos appearing on various Instagram accounts devoted to travel and adventure. He created an Instagram page to document the phenomenon. It’s almost as if there’s handbook of Photos One Must Take. Or just a lot of unoriginal people trying to generate content.

Although I’m guilty of the Feet In the Back of the Van shot, I try to be more original. Also, since I’m usually alone, and an old fart, I don’t have an attractive young woman to pose in my shots.

The yoyo again

I felt rather crappy yesterday. Swallowing was very painful, killing all desire to eat. It took me 45 minutes to drink an eight-ounce bottle of Ensure, wincing with each swallow. At my weigh-in I’d lost another seven pounds. (I do not recommend the throat cancer diet, no matter how fabulous the results.) There was the possibility of installing a feeding tube, and a few times during the day I would’ve welcomed another hole in my body and the daily complications that come with it.

But today? I feel pretty good. Swallowing is only slightly uncomfortable. My morning bottle of Ensure went down much easier. I feel stronger. I credit the black bean soup Ceebs gave me last night.

The downs of this up-and-down cycle are discouraging. I can hang in, though, as long as there are ups.

UPDATE: I just ate solid food (eggs) with almost no trouble. I hope this is a continuing trend.

The small things

I was a half hour early for today’s radiation treatment. A nurse walked up to me, called me by name, and said my radiation oncologist, Dr. Chin, could see me before my treatment. Cool. She led me down the hall to the offices. There were some people clogging the reception area but I could see Dr. Chin on the other side of the room. He saw me and waved. He recognized me. One of I don’t know how many patients in a busy day. That was nice.

Third time’s the charm

Today’s radiation treatment didn’t go as smoothly as glass. First the technician lightly bumped my trach tube while positioning the mask. That triggered a coughing fit. While I recovered from that she cut the hole for the trach larger. This time there was no bumping but the previous coughing fit had brought mucus to my mouth and throat, causing some gagging when I returned to the horizontal position. So I sat up and dealt with that. The rest of the session proceeded without incident. Only thirty-one more radiation treatments to go.