Real food

Eating becomes a chore when you have a big tumor at the base of your tongue. Swallowing is painful (which is what led to the discovery of the tumor in the first place).

You can’t smell much when you have a tracheostomy (medical speak for a hole in your throat) since it sort of takes your nose out of the loop.

And when you add the general undesirability of hospital food—especially soft varieties—it’s no wonder one of my problems has been undernourishment.

That changed when Ceebs cooked up some of her farm fresh eggs. She keeps about a dozen chickens in her back yard. In the middle of one of the largest cities. She pampers them and feeds them wonderful things. In return they produce truly amazing eggs.

I haven’t eaten so enthusiastically in months.

Part of the crowd

Leaving Tucson yesterday, LaVonne was in the lead, driving my van. It was the first time I’ve ever been able to see the Rolling Steel Tent as others see it, as one vehicle in traffic. To my surprise, it fit right in. Just another commercial van in the morning commute.

Now, if someone were on the lookout for nomad vans, they might pick out the Rolling Steel Tent. “Look, a solar panel on the roof. It’s one of them.”

But stealth isn’t my priority, only innocuousness. See me but fail to care. I suspect lack of concern is easier to attain and maintain than the perfect camouflage of stealth.

Heroes

Heroes go out of their way to help others when there is no benefit for themselves.

Yesterday, The Other Lou drove a thousand miles just so I could get to Los Angeles. From his home in Yucaipa CA to Tucson to Los Angeles and back to Yucaipa. Because he wanted to. Because some guy he had never met needed help.

Yesterday, my friend LaVonne drove from San Diego to Yucaipa to meet up with The Other Lou, then drove the Rolling Steel Tent from Tucson to Los Angeles, and her own van from Yucaipa back to San Diego. Because I needed help.

This is the type of community we full- and part-time nomads have. Some very excellent, caring, generous people who defy normal society’s belief we’re just worthless, lazy, losers.

Again, from the depths of my heart, thank you thank you thank you The Other Lou and LaVonne. You are my heroes.

Meanwhile

While I was off malingering in the hospital, Lou got the fourth wall erected and the rafters in place.

Here you can see how there’s going to be a new roof under the old one.

So, an update

Nothing, really. Just a few days of kicking back in a budget hotel room, tending to the tracheostomy, consuming soup and smoothies, using the wifi.

There was a night I couldn’t get to sleep because I couldn’t find the happy combination of comfort and being able to breathe. Around 4 AM, fatigue eventually made me give up on the comfort part of the problem.

LaVonne and The Other Lou arrive in the morning to haul me to Los Angeles where my former wife, Ceebs, will be watching over me at least as well as she does her chickens and bees. That means I’m in excellent hands.

I have an appointment on the 3rd with the head of my oncology team. And then things get serious.

An excellent article for those outside the nomad world

The Rise of the Rubber Tramps by Elle Hardy.

THE  term “American Dream” was coined in 1931, by the author of a book called The Epic of America—ironic timing, since the Great Depression was starting to destroy this dream for so many. But the idea behind the term is one as old as the founding of America itself—this seductive notion that there is equality of opportunity for all in this country, and that those who pull themselves up by the bootstraps can make anything of their lives.  

What’s not mentioned is what underpins the Dream—a toxic culture of competition. As I watched the future American president repeating phrases about winning over and over during his election campaign—We’re going to win. We’re going to win so much. We’re going to win at trade, we’re going to win at the border. We’re going to win so much, you’re going to be so sick and tired of winning—I sensed this was something unique, this relentless focus on winning, and uniquely destructive, to the country that was my new home. 

The chasms that exist in America—between the races, genders, rich and poor, urban and rural—are broadened by a culture that is obsessed with competition. The great disturbance in American society rests on this fault line between winners and losers—a divide that’s becoming increasingly pronounced.  

The World Values Survey, a global research project studying the beliefs of people in different countries, shows that Americans esteem competition like no other industrialized nation on Earth. Americans believe more strongly in the fairness of unequal outcomes. Author and social commentator Fran Lebowitz says there’s an idea running throughout American society: “All people who succeed, succeed on their own, and all people who fail, fail on their own.”  

This viewpoint has become a shared fiction on an epic scale. The values anchoring it are as engrained as a verse from the Good Book—a verse anyone can preach, because everyone knows it. But competition, and the importance of winning, create more than just a belief system. These intertwining strands form the double helix of modern America’s DNA.

...Loserdom is rife in a land where everyone is taught to be a winner. But out in the Sonoran Desert, a community is trying to do things differently. Whether by consciously abandoning the American Dream—or by having slipped into a financial situation where the Dream abandoned the American—we are setting out to define success on our own terms. 

Staycation

Here’s a quick update on my situation.

First, arrangements are all in place for getting me and the Rolling Steel Tent to Los Angeles. My friend LaVonne, who had recently returned to San Diego from Taos, volunteered. We just needed a second driver. A guy named Lou (not to be confused with my long-time friend Lou) from near San Bernardino stepped forward. LaVonne will drive to San Bernardino then ride with Lou to Tucson. Then I’ll ride with Lou while LaVonne drive my van. Then Lou and LaVonne will return to San Bernardino and LaVonne will drive her van back to San Diego.

Dr. David Hu and You Know Who

Second, I was released from Tucson Medical Center yesterday and reunited with the Rolling Steel Tent. Dr. Hu said I was progressing well, that the stoma was healing up as it should. I have a load of self-care supplies, including a portable suction pump. I’ll be staying in a hotel for a few days until LaVonne and Lou arrive. It’s sort of a Memorial Day Weekend staycation.

Waiting for the valet to return my home

The question, of course, is what adjustments will I need to make in my regular life now that there’s a hole in my neck? And how much energy will I have? And how independent will I be able to be—at least until cancer treatment starts? I guess I’ll find out.

Post-hospitalization celebration/therapeutic caloric intake

Having been autonomous for so long, I imagined from my hospital bed that it wouldn’t be a big deal to drive myself to Los Angeles. After all, I’m a driving fool. Eight hours of Interstate, the last of it crawling in traffic? No big deal. Just take it easy, don’t push myself. Break it into two or three days. Pull over and rest in my very own bed whenever necessary. Right?

But driving from the hospital, to the store, to the hotel nearly wiped me out. Okay, being driven is the prudent choice.

It’s especially prudent when I might have a huge snot bomb attack at any moment.

Most of my hospitalization I was dealing with the discharge of some sort of phlegm-ish immune system fluid. That has almost stopped but has been replaced with regular old snot. Or super snot. With only a millisecond’s warning it can explode from around the edges of the trach tube, my nostrils and mouth, expanding greatly in volume like a YouTube science experiment. (Watch how adding one drop of this chemical to two drops of this other chemical instantly creates a gooey foam mass the size of a bus!) It would not be good if a snot attack happened while driving.

So, basically, I’m feeling pretty good at the moment. I have enough energy to take care of myself, pain is limited to swallowing and a throbbing head, and logistics are under control. I have an appointment June 3 with the head of my treatment team. Then things will get very serious. Until then, I’m pampering myself and trying not to drown in gack.

Hold on, it’s going to be a bumpy ride

A yoyo on a seesaw mounted to a rollercoaster on a storm-tossed ship. That’s about how steady I’ve felt the past week. While I’m certain some top level computer modeling could find a point in all the zigging and zagging that remains relatively unmoved, I’m also certain I’m not there.

Wherever on the squiggly positivity-negativity scale I might be at any moment, I know I’m not far from people who care. Far more people than I’d imagined.

Thank you everyone. Really, honestly, thank you.

Speechless

Not being able to speak the past few days is obviously inconvenient, what with needing to write everything out. (Hey, people, can you keep things down to yes-no questions?)

But what I really miss is the ability to deliver snappy comebacks. That’s an essential part of my character, my basic self. My wisecracks might not be funny, but they’re good for my state of mind. Sitting there, watching an opportunity float away, is …sad. How am I supposed to be an upbeat cancer patient under the circumstances?

And there’s the perception that uncommunicative people are depressed. They keep asking if I’m alright. They’d know I was if I could deliver a few groan-inducing remarks with just the right timing and tone of voice.

Maybe my lowbrow cracks will be elevated to high comedy when delivered with a speaking valve.

What if the worst thing happens and you need a ride?

Okay, so here’s the thing. I need to get my van and myself from Tucson to Los Angeles next Monday, the 27th. That’s where I’ll be staying during radiation and chemotherapy.

Everyone says I shouldn’t drive myself, though I tend to disagree. To satisfy cautious folks I’m looking for two people, one to drive the Rolling Steel Tent and the other to drive me. About 500 miles and 8 hours, all down I-10.

In case you’re wondering, the Rolling Steel Tent has only a driver seat and bed, so the trip can’t really be made with just a driver and I in the van. At least not legally. And I freak out if I can’t see the road. And the RST driver would need a way back to Tucson.

I would pay for gas and, if needed, lodging.

If this is the type of insane-but-humanitarian road trip you’d like to make, email me at rollingsteeltent@gmail.com or text me at 980-939-2037.

I am unable to speak at this time because of a tube in my throat. That means I wouldn’t be a chatty road companion, which is either good or bad, depending on the type pf person your are. And I’ll probably be coughing a lot of mucus. Squeamish people beware.

UPDATE: A couple of people in the nomad community stepped up and worked out a plan. I have my drivers. Another problem dealt with.

What if the worst happens?

“Everybody has a plan until they get hit.”

—Mike Tyson

Full time nomads talk a lot about emergency plans for our live-in vehicles. Do we have a repair or replacement fund for it? Where do we live if our van is in the shop? What if we wreck it?

We don’t talk as much about plans for health emergencies. As my mentor Bob Wells says, it’s one of the things we’re in denial about. Maybe because it’s a scarier topic. Maybe if we don’t talk about it it won’t happen.

Some of us are already dealing with chronic health problems. Many of us are of the age bodies start to break down.

So, what’s the plan?

My plan was to not worry about bad health until I had to. Well, now I need to. I have stage four throat cancer. But luckily (considering the circumstances) a plan came together. I have a place to stay, people to help me. Friends, family, medical professionals and Medicare are making it happen.

But what about you? Will whatever plan you have survive being hit, or will you end up on the canvas? Share your thoughts.

Unrestrained

I had a tube pumping moist, oxygen-rich air at the hole in my throat. On my right arm was an automatic blood pressure cuff that pumped up every hour. On my right index finger was a glowing pulse measurer. My left arm was connected to the IV machine. Around both shins were inflating-deflating cuffs to prevent blood clots. And all over my torso were connections to the EKG monitor. I felt like I was caught in a spider web. Moving the slightest bit required intricate choreography. Using the commode required technical assistance.

When I whined to Dr. Hu about the lack of mobility, he said, “I don’t think we need all this. Let me see what I can do.”

Now I’m completely disconnected. Just me, the tracheostomy, some warm socks and the stupid “robe.” I’m much happier. And less whiney.

Live, from the ICU

I'm not comfortable but I'm still breathing.

Away

I go in for a tracheostomy this afternoon. I don't know how long it will be until I get my computer back. Stay tuned.

Intent?

The hospital called to get intake information for tomorrow. Among the many questions were some from Medicare to see which benefits I might be entitled to (or what things some other program was paying for so Medicare wouldn’t need to).

“Are you checking into the hospital because of an accident?”

I couldn’t resist. “Does anyone get cancer on purpose?”

There was a pause, then she gave a forced chuckle. I guess not all hospital staff have a dark sense of humor.

And I guess it's cyber-begging time

Medicare doesn't cover everything. Feel free to help with the shortfall by using the donation button on the right.

What should I say?

I don’t use cancer patient slogans. That doesn’t mean I’ve given up. That doesn’t mean I’m depressed. It’s just that high octane positive thinking is not my style.

I’m pragmatic, less emotional, and maybe a touch more reality-based. I try to avoid self-delusion. (Maybe I’m deluded about my pragmatic, less emotional, reality-based lack of self-delusion. Hmmmm…)

My slogan (if I were the sloganeering type) might be, “We’re going to give it our best shot and see what happens.” Or, “If I remain cautiously optimistic I’ll be all the gladder if I’m cured rather than even more crushed if I’m not.” Neither of those work well on walkathon T-shirts.

Third wall

Beating the heater

Update

Well folks, here’s the deal with my throat. The mass shown in the CAT scan is a stage 4 tumor on the base of my tongue. Surgery would mean removing the tongue and probably vocal cords. No one wants that, so it’s radiation and chemotherapy for me.

First they’ll do a tracheostomy—making a hole in my throat and inserting a breathing tube—so I won’t suffocate when the tumor swells from radiation treatment. That’ll be done in Tucson. It means a week in the hospital, part of it so they can train me on using and maintaining the trach tube.

A van in the boonies is a bad place to deal with cancer treatment. Even though a patch of land with a partially built house is slightly better, Lou’s place is inconvenient to medical care. So during the six weeks of daily radiation and chemo, I’ll be staying in Los Angeles with my former wife who is still my dear friend. She has cared for cancer patients before; first her mother and then her father. Also, if I need to feel like crap, I’d rather feel like crap somewhere with beaches.

So… my glorious nomadic life is on hold. It might even be over. I’ve said many times I don’t want to live in a building ever again, but, you know, it doesn’t always work out that way.

I’ve also said that if I was ever faced with something like cancer and the inability to live the way I wanted I would just go out in the desert and shoot myself. But the survival instinct insists I don’t do that. I argued with it and we came to an agreement that I would do the therapy and see how it goes, then reassess the situation later.

I’m lucky. I have supportive friends and family. I have Medicare. And I’ve had at least seven years as a free man wandering the country, experiencing amazing and beautiful places. If I had contracted cancer while still stuck in my old life, a cog in the system, I would be angry and resentful and I’d feel like my life was a waste. But I don’t. I’m at peace with life. I’m contented. If this new adventure turns for the worst (and it eventually does for all of us) so be it.

If you have a bucket list, if you've been wanting to change your life, do it. No one assessing their life wishes they had spent more time in a rut.

Wall two

A new adventure

An exclusive look at the inner Al

If you’ve been following this blog the past couple of months you know about my quest to find out what’s wrong in my throat. There were times I thought the medications were working, but the improvements were minor and brief. So yesterday they sent me to have a CAT scan. The findings:

There is a large, slightly enhancing soft tissue mass identified superior to the larynx, in the vallecula region. The mass is inseparable from the epiglottis. The mass measures 4.7 x 4.1 x 3.9 cm in size and has a slightly lobated contour. It is noted to produce significant narrowing of the airway in this region. The larynx itself is not involved. Note is made of a minimal amount of adenopathy in the upper neck bilaterally adjacent to the neuromuscular bundle. This is consistent with a neoplastic process with associated metastatic lymphadenopathy. 

The parotid, submandibular, and thyroid glands are normal in appearance.

Okay, some translations:

Vallecula: a depression just behind the root of the tongue between the folds in the throat. These depressions serve as "spit traps"; saliva is temporarily held in the valleculae to prevent initiation of the swallowing reflex. 

Epiglottis: a flap in the throat that keeps food from entering the windpipe and the lungs 

Adenopathy: a disease of the lymph nodes, in which they are abnormal in size or consistency 

Parotid and submandibular glands: salivary glands

Lymphadenopathy: swollen lymph nodes 

So Friday Lou is driving me to Tucson to see an ear-nose-throat specialist. There might be some endoscopy and a biopsy. And I might end up in the hospital for surgery. That means I’ll probably not be posting for a few days.

Now to make this relevant to the nomadic life. I’m lucky in two ways. One is that I have Medicare, so I can afford treatment. The second is that I have someone I can depend upon for whatever help I need. A round of applause for Lou.

It’s allowed

In 1995, when I was living in an apartment on Long Beach, California, I took a drive around the country in my Honda Accord Coupe to see what there was to see. About 4,000 miles later, in Burlington, Vermont, I figured it was time for an oil change.

Up until that point there was this idea in my head, implanted by more than four decades of conventional living. Things like oil changes were supposed to be done when you were home, not while you were traveling. Because that had always been the case, and what had always been must always be, Right? But an uninfected part of my brain said, “There’s no reason you can’t have it done here. Or anywhere else. There’s no rule.”

This memory came to mind as I was having the Rolling Steel Tent’s oil changed this morning in Silver City, New Mexico. Many many oil changes since Vermont.

It’s up

It turned out the three of us could raise several hundred pounds of wall without help. In a wind. Without injuries. Because we are studs. (That’s sort of a framing joke.) (One that’s not very good.)

Wall time

After much measuring and remeasuring, the framing for the first wall is done and it’s time to add the exterior sheathing. Everything was built on the floor and it might take something more than us three retirees to lift it into position. Are these Amish guys available this week?

Size matters

My spoon is barely small enough to fit into a Yoplait container. I knew there must have been a reason (other than taste) I usually bought other brands of yogurt.

What is this plumbing thing of which you speak?

Where is home?

When I was a kid my concept of home was as simple as the rest of my developing brain. It was where my family and my stuff was.

Then, when I was sixteen years old, the family moved 2,000 miles away. Even though I still had my family and my stuff, the new city didn’t feel like home. I didn’t fit in.

After college I moved to Southern California, and I felt much more at home. A decade later I moved to San Francisco. I lived there only four years, but thirty years and three other cities later, that’s the place I consider home, in the conventional sense.

But what about now that I’m living unconventionally? Well, you’ve probably seen the stickers: Home Is Where You Park It. That’s me. Except I’ll take that slogan a step farther. Home is even where I’m not parked. To me, home is not a building, not a spot on a map. This nomadic life is my home. I am my home. I’m always there.

Ghost town

Lake Valley, New Mexico, is another mining town that dried up when the ore did. However, a couple of people hung on there until the late 1990s.