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.

- - - - -

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.

Failed experiment

I’ve been trying various soft foods to see which ones go down the easiest. This afternoon it was jello. It was easy to swallow. No problem. But my epiglottis malfunctioned and the next thing I knew I was exhaling melted raspberry gelatin out of my trach tube. I hoped it was only jello and not a certain other red fluid. At least it didn’t hurt or make me gag.

The morning report

Okay, the first side effect has kicked in. The inside of my mouth and throat are swollen, sensitive and not very cooperative. Breathing is trickier and swallowing is more difficult. This was expected sooner or later.

I haven’t shared this to complain about my situation. It’s so others can learn what might occur if they were ever in a similar situation.

I’m supposed to be brushing and gargling several times a day and drinking ridiculous amounts of water. Those simple things are much harder now. To further complicate things, my epiglottis—the flap that keeps non-air out of my trachea—isn’t functioning at 100 percent. A pill went down the wrong way the other day. Not a happy experience.

So, yeah, there’s some anxiety about how much more difficult things will become. I’d be crazy to believe everything will be peachy. But my outlook is still positive.

Day 1 of treatment

It was a long day, mostly because of the waiting.

First, there was a blood draw. They want baselines on all the stuff they measure and to see if there are any red flags that would require a change in my treatment. We had to wait for the results and the lab was backed up.

Meanwhile, the nurse took me through a long list of possible side effects and what to do about them. Most of this info was in a stack of papers they gave me last week, but there was time to kill and I wasn’t going anywhere. I was glad to learn that a PICC line was unnecessary. I had been dreading having a tube run up a vein from my arm to my heart, plus needing to keep it clean and dry.

Then the nurse put in an IV and started a hydration drip. I had peed when I got up, peed before I left the house, peed before going into chemotherapy, and peed before she started hooking me up. Then I had to pee three more times, rolling the IV pole with me. Then I peed before leaving the clinic. And peed when I got home. And a few more times that evening. It’s my new hobby. But it’s good because it helps flush the chemotherapy drug from my system.

Lunchtime came before the green light from the lab. They brought around a food cart but it was all solid foods which I can’t swallow. But Ceebs had brought a thermos of soup.

The go ahead finally came from the lab and the drug was hooked up, along with an anti-nausea medicine. Since the two drugs can’t be mixed in the same IV line, one of them was run to my other arm.

Some of the plumbing, and a window view

The insertion of the IVs was the least pleasant part of the entire treatment, and it was no big deal. The rest was just a matter of sitting there. And peeing. At one point I think I felt a low, mild buzzing in my body, but that might’ve been from sitting for a few hours.

Chemotherapy will be once a week.

Nap time

Because of the late chemotherapy start, my radiation therapy had to be pushed back. The chemotherapy staff took care of that. And it’s in the same building. I made it in time to radiation, but they were backed up, too. So I waited. And peed.

Radiation therapy was easy and fairly quick. My fear was whether I’d be able to swallow with the mask on. The various mouth and sinus fluids behave themselves pretty well when I’m upright, but going horizontal makes everything shift, causing coughing and the need for a lot of swallowing. The mask that holds my head in place also holds my mouth open a little. It’s hard to swallow that way. But things went fine. Maybe my body knew it was time to cooperate.

The ceiling of the radiation lab was black with star lights, like a planetarium. When the radiation machine moved around me it was like a telescope being shifted into position.

The machine circled 360° around me several times, back to front to back again. It has sort of an iris made up of dozens of segments that adjust to target the radiation to only the desired area—the tumor at the base of my tongue. The shape changes as it circles me. It was over in fifteen minutes. I felt nothing.
Radiation therapy is five days a week.

Side effects aren’t expected to manifest themselves for a couple of weeks. There have been none so far. Except the peeing. Oh, excuse me, I um need to, yeah…

Local flora

Not just a meme

If you’re at all involved in what the kids call #vanlife, or if you just have a dark sense of humor, you’ve seen pictures of the creepy Free Candy van. Well, here’s the story behind it.

The van was created by Australian Ron Jacobs who, like me and other nomads, chucked his old life to wander the American West.

"Life. Work. Family. The whole shebang," he said. "All at the same time ... I ended up picking up my savings and chasing my dreams." 

Those dreams involved a "big international adventure", so he left to travel the American southwest and camp out while skydiving, windsurfing and attending music festivals. 

Rather than live in a tent, Jacobs decided it would be better to buy a second-hand van, but knew he was trading comfort for the stigma associated with being a strange man in a white, windowless van. 

Instead of shying away from the image, he decided to play up to it by going over the top. 

"I was just kind of thinking, like most things in life that you can't change ... what you can do is embrace it and celebrate it," Jacobs said.

Jacobs recently sold the van—and the intellectual property associated with it. May the new owner keep the meme alive.

Lost and found

Last night I dreamed the Rolling Steel Tent was stolen.

I panicked, of course. My stuff! My transportation! My home! What will I do?

When I awoke I realized the dream was about losing my nomadic way of life, my independence. Permanently or only temporarily. And, really, it was about losing myself. My self.

I was lost and unhappy the ten years or so previous to becoming a full-time wanderer.  But when the concept of van dwelling presented itself, something deep inside shouted, “Yes! That’s it! That’s me! The real me.”

In explaining how I felt out of place in my family, I often say, “If I had learned I was adopted it would’ve explained so much. If I had learned I’d been left by Martians it would’ve explained everything.” Well, vandwelling explained everything. “Yes, of course, that’s who I am.”

There was never any doubt, only logistics to be figured out.

So now, the cancer diagnosis and the treatment that starts tomorrow are just another set logistics. Take care of that stuff and get back to being my true, happy, fulfilled, contented self.

The wa-ai-ting is the hardest part

Radiation and chemotherapy are scheduled to start this coming Thursday. Five days of wondering how well I’ll handle it and how well it will go. Five days of wishing we were already doing it so it can be over sooner. Bring it on, already.

Magical healing elixir in the making

Down the hatch

Swallowing is pretty much automatic, until it isn’t, until you have a tumor at the base of your tongue. Then it’s a conscious act. Each time. Even when drinking water.

No more glug glug glug from a glass, swallowing as I go. Now I need to take in a partial mouthful, hold it, ask the tongue and other muscles if they’re ready, then, all together now, three two one go. Then wait to make sure it went down the right way. Then swallow again just to be certain. And again because some mucus has decided to join the party. Then repeat all that with the next bit of liquid or food.

When chewing I need to analyze what’s going on. Has every bit been chewed down to a size that won’t catch in my throat, won’t trigger a gag reflex, won’t suffocate me? Am I certain? Are things still wet enough to slide easily? Okay everyone, three two one go. And so on.

It’s probably a good thing to make all eating—throat cancer or not—a more conscious act. Maybe all material consumption should be more considered, more deliberate.

Missed me

On Memorial Day weekend this 8.5-million-pound rock tumbled from a mountain and destroyed part of Colorado Highway 145, which runs between Cortez and Telluride. I’ve driven that road several times, but not that day. My luck continues.

While the state doesn’t have the funds to remove the rock, it has federal highway funds it can use to reroute the road around it. Because that’s the way the world works.

Son of Hannibal Lecter

The day started with the oncologist in charge of my chemotherapy, Dr. Deborah Wong. I learned several interesting things.

For example, throat cancer is usually caused by smoking, chewing tobacco and/or drinking. But I was never a smoker or dipper, and I rarely drink. However, there’s a slightly different form of throat cancer caused by an HPV infection. In a weird way this is a good thing because radiation and chemotherapy work a lot better on this type of cancer.

On the negative side of the ledger, the possible side effects of the chemotherapy drug they want to use include the temporary or permanent worsening of things I already have to cope with: hearing loss, tinnitus and neuropathy. They will monitor those things carefully so they can adjust treatment.

I also signed consent forms to participate in a clinical trial of a nutrition supplement. If I lose a certain percentage of body weight they’ll have me drinking a super-duper Ensure-like drink. Six of them a day. I sampled it. A little chalky, but otherwise okay.

Then it was time to have my Inquisition mask made. Gotta keep my throat exactly positioned for each radiation treatment. Not only will the mask aid in treatment, it will also provide my Halloween costume from now on.

One of these things doesn't belong here

It was street cleaning day so I had to move the Rolling Steel Tent to the other side of the street. There was a spot by a house that was having some remodeling done. Blend right in, baby.

I'm lucky

So, here I am, dealing with throat cancer. Part of me feels sorry for myself. Woe is me. I have pain, discomfort, inconvenience and can’t be living the nomadic life I love.

The less self-absorbed part of me realizes my entire life has been rather carefree, drama-free, tragedy-free, and that this is my first serious problem. Sixty-seven years of smooth rolling versus one pothole. That’s a fair ratio. Ridiculously fair.

Far too many people are on a life road that’s more craters than pavement. Just sketchy strips of asphalt connecting sinkholes and toxic waste pits. And too many of them have to navigate it alone—while being criticized for their lack of success.

During my time in the hospital and during yesterday’s appointments I saw people in much worse shape than me. It put my situation in perspective. I’m mostly fine. My life is mostly fine. I don’t feel great but I can function. And I have help. And people who care. Which, ironically, is more good luck for lucky me.

Maybe some of my luck was transferrable. If you’re out there wishing you could help me, help someone else instead. You probably won’t need to look far.

Meanwhile

The shower and toilet area taking shape at Lou’s place.

The big update

Today I met with the surgical and radiation oncologists at UCLA medical center. The good news is that the prognosis is better than what I had been expecting. After about six weeks weeks of radiation, augmented by chemotherapy, they expect to get rid of all the cancer. (Surgery is not an option in my case.)

I’ll meet with the medical oncologist (the chemo doctor) on Thursday and also get my radiation mask made. Treatment will begin next week.

The only unknown is how much agony I will or won’t need to endure. Everyone reacts differently. I don’t expect it to be carefree, what with them attacking my tongue and throat. Eating will probably become more difficult than it is already, but, to balance that out, they predict the tracheostomy could be removed part way through treatment. That would be a huge annoyance and inconvenience lifted.
The team also includes a nutritionist, a dentist, and a swallowing & speech therapist.

Information was coming fast, so it was wonderful to have Ceebs with me to keep things documented and organized. She says not to trouble my mind about the logistics of all this, to just concentrate on rest and recovery. I can do that.

So, how long will I need to stay in Los Angeles? There are periodic checkups after the the radiation and chemotherapy, but I hope to be in good enough shape to do some wandering in between. The important thing is that if they’re correct with their prognosis, I eventually will be back on the road.