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.

Out of the hospital, back in the real world

Ah, the land where they don’t come to take your blood at 6 AM

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.

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.

A different kind of #vanlife

Radiation treatment is in a different building, so they packed me into an ambulance and drove me over there. Along the way I kept thinking how easy it would be to convert the ambo into a nomad home. Lots of headroom, nice cabinets, and horns that would really get drivers out of your way.

Too late for me

My friend Forrest sent me the link to a Denver Craigslist ad. If it were 2013 and I hadn’t already bought the Rolling Steel Tent, this is what I would’ve purchased. The seller is even asking less than what I paid.

Chevy box truck, aerodynamic nosepiece, barn doors in the rear. I looked at similar ones at a U-Haul lot, but they didn’t have the nosepiece and the rear doors were all roll-ups, which cut into headroom and are hard to make weathertight. And slightly longer ones had dually rear axels, which I didn’t want.

So if you’re vanless somewhere in the Denver region, you should check this one out. It could make a sweet home.

The latest

About 3:00 Tuesday morning I woke to strong shivers that carried on for about an hour. 

When I finally dragged myself out of bed at 9:30 I was exceptionally weak and unsteady on my feet. I figured this was all from by dangerously low caloric intake the past few weeks.

Ceebs drove me to my radiation appointment and I had her procure a wheel chair. I was fairly certain I wasn’t going to be able to make the walk.

I saw the doctor (two doctors, actually) after treatment. My temperature was 106°.  They were certain I had some type of infection. The quickest way to get a battery of tests run was via the ER. So they and my chemo doctor called ahead to UCLA’s ER in Santa Monica (of which they had a higher opinion than the one in Westwood).

In the ER waiting room. Woo! Fun!

They drew about nine vials of blood, some urine, and a couple of mouth swabs, moved me to a private room to lessen exposure to infection.

They loaded me up with painkillers and antibiotics. Also Tylenol to lower my fever. I didn’t know it was good for that. My temperature was down to normal within a half hour. 

I slept well.

Good morning

This morning I feel better—sort of pre-fever & chills cancer patient me. I await test results. I hope I get a passing grade.

Meanwhile

Lou says most of the exterior is done. He just needs to do the porch and steps.

The roof required some neighborly help. And the neighborly help required the neighbor to actually show up.

Brunch with O

Friend, former workmate, and beautiful soul Ophelia was in town from Boise. She met with Ceebs and I for brunch and conversation at Mama Lu’s Dumpling House. Well, she and Ceebs brunched while I wrestled with my digestive tract. The food looked good, anyway.

Making the call

My friend Sherita has been battling health problems since winter and it has severely impacted her ability to live independently, to live like a nomad, to live like the strong woman she is. It’s the type of thing that makes me sad, especially when I’m in no position to be there and help, to wave a magic wand, or to at least give a hug.

Technology can bridge the gap, though. We talked this evening via Facebook Messenger. Voices can convey so much more than text. It was comforting, soothing for both of us.

Another way to do it

Sage advice

At least I kept the eyebrows

It was haircut time and I figured, eh, might as well take the whiskers too.

Want a dog?

Every nomad needs a dog, right? Every dog needs a home. And travel. And open spaces.

Well, a friend of Ceebs has been fostering a sweet dog and wants to find a permanent owner for it soon. Here’s a flyer she did.

Contact the South Los Angeles Shelter at (888) 452-7381 or (213) 485-0303.
1850 W 60th St
Los Angeles, CA 90047

Go to this link to learn about fees and adoption policies.