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.