Tuesday, January 26, 2010

Good night, nurse

Methinks it is not wise to blog by clicking send at a time when your reason’s playing treason and your thinkin’ has been stinkin’. So I’m passing these scant words to a friend of Thinking Positive who agreed to update this page.

Gang, I am now a resident of a skilled nursing facility in Hollywood as a result of the determination by many who believe I am no longer able to care for my situation on my own (case in point: the struggle by my Boy Pony Express to read my incoherent handwriting).

The fast-paced environment here leaves little room for learning how to be a citizen of a nursing home community. Already I have had a flare-up during a sponge bath. I wanted to wail, “hey, I can wash THOSE myself, thank you very much”.

In theory, I’ll be here for the duration. We’ll see about that.

Friday, January 22, 2010

No need to Hurry,Sundown

Chris Eisenberg, (Chris E) another AIDS/LifeCycle participant, is doing her darnedest to keep the worlds of cancer and AIDS intertwined.

After stopping at the hospital on Monday to show me a Technicolor-ready pair of slide shows of ALC events --some charting the erosion of my features, Chris and her reliable mascot BunnE hopped back to Hollywood with laptop to allow me another post.

At least I hope it is Chris E and BunnE sitting across from the bed from me.

All day I have been seeing things that I don't believe are actually there. First I thought an intruder enter my hospital room and was looking out the window at rain-slickened Sunset Boulevard. Then they wheeled my IV pole into an architecturally altered bathroom that looked like some kind off-site betting establishment. And finally, while lying in bed --it's really all I do these days--and believing that a friend was parked in a corner waiting for two nurses to wrap up a sponge bath, and was alarmed to get a text from him explaining he hadn't left his office yet, o!

When one of my saw on his late-morning rounds, I described each episode to him. "You've been Sundowning," he explained.

Another name for this condition may be "Paul's Brains Slowly to Mush".

By the way, Chris E is a stellar human being and one of the brilliant flames that blaze California highways on AIDS/LifeCycle year after year. Visit her ALC page to support her.

If you see her ask her if she noticed the geezer in raincoat staring out on Sunset Boulevard this afternoon. I swear he was there all the damn day.

Tuesday, January 19, 2010

‘Fessin’ up to my absence

The last time I prepared to update this blog seems as remote to me now as watching Beanie and Cecil cartoons while slurping a bowl of Quisp cereal.

But it was only Saturday morning. I was sitting on my sofa, staring at my computer three feet away, feeling drained of all energy, and absolutely inert, unable to move from one position to the other.

Two friends were visiting Los Angeles for the holiday weekend, and we had plans to meet at my apartment. Instead, I tossed a monkey wrench into the plans for the day by calling on two other friends to rush me to Kaiser’s emergency room.

Late Saturday, X-rays revealed that I had substantial fluid in my lungs, and sometime after midnight, a laborious procedure to remove some of the fluids began. At this point, it’s not clear whether the fluids signal an aggressive advance of my cancer, or if this episode is just another annoying bump in the road of life.

I’m writing this on a laptop loaned by a pair of Positive Pedalers who drove from the Bay Area. They graciously have suppressed their snickers as they watch me struggle with a laptop keyboard and a cursor that spontaneously slips into hiding. They know it’s not nice to needle an old geezer with a misshapen skull and 27 tubes in his body.

I’ll write more as I can.

Meantime, a homework assignment for you: Find out why manufacturers of urinal receptacles can’t invest some serious R&D into development of a product that would satisfy more consumers. The current standard is challenge for the lesser endowed to use, especially in the dark of night wile contending with all of the other wires, cords and tubing that make it nearly impossible move while in bed. My soiled linen bin overfloweth.

Go to www.pospeds.org for some spiffy news about yours truly

Thursday, January 14, 2010

Caving into reality

What is the difference between yours truly and the greater Los Angeles white pages?

The L.A. white pages has column after column of Chins.

Your loyal blogger has none.

I'm pretty sure I had one when I went in for my pre-Halloween biopsy last fall. Since that day, the lower part of my face has been cloaked by bandages and surgical tape and until recently I hadn't really studied it that closely.

When I did the other night, I felt like wailing "WHERE'S THE REST OF ME?", like Ronald Reagan in "Kings Row."

It's the damnedest thing: My face essentially goes from lower lip —which is severely contorted— to my neck.

Aside from my old chin's way of humanizing my features, I can't really say I miss it that much. What are chins good for, anyway? Sure, I could rest it on my knuckle if I ever wanted to look thoughtful but in my book unless you're Kirk Douglas or one of his
kids, you probably need your chin in order to achieve in life less than you think.

The wound incurred by that long-age biopsy is finally showing signs of stabilizing, so it won't be long before wearing bandages may be superfluous, and I'll need to decide how I feel showing my chin-less mug in public.

It may be a moot point; I'm practically a fulltime shut-in these days.

I shouldn't complain. The people in Haiti affected by Tuesday's earthquake —now that's something worth getting upset about.

And the loss of my chin? Not a gig deal, gang. Even those strong jawlines on Mount Rushmore are bound to erode eventually.

Tuesday, January 12, 2010

Press P for Panic

At this stage of illness, I've gotten pretty accurate at estimating how much energy I need to complete one of life's basic activities, and whether I have enough fuel in my tank to pull it off.

There are really only four stations in my apartment that I use for sitting —the sofa, the bed, my desk and the toilet— and much of my time is spent calculating whether I have enough energy to move from one station to the other.

Like, I just spent a good 30 minutes building up strength to move from the sofa to my desk, which is only about five feet away.

Pathetic, eh?

It's a bit more complicated that it may appear. My sofa —actually a loaner futon that showed up at my doorstep for the holidays— slopes downward, as if its intent is to swallow you whole. As soon as you plop down, your butt starts to slide toward the floor, and standing erect from the floor requires a good investment of wind.

If I ever found myself on the floor and unable to move on my own, I have a button-like device on my wrist that I can press to tip off three of my friends and a service based in Massachusetts about the crisis. In theory, this gadget —its name is LifeLine— should work swimmingly. We'll see about that. I've been wearing the gizmo more than an week and I'm surprised I haven't triggered the alarm by accident yet.

And speaking of accidents: This morning I had an incident that probably should be declared hands-off for blog fodder but I'm gonna share it anyhow. By basking in humiliation, maybe I can set an example for Tiger Woods.

I was slouching on the sofa with the fibers of my jammies grazing the floor when I realized I had been there for hours, reading, napping and feeding myself my medicine and Isosource.

And I needed to pee.

Thing was, I didn't quite have the strength to achieve liftoff. I mulled over the best course of action to take. Should I just continue napping, hoping the urge to pee will pass? Should I move toward the bathroom by scooting my butt on the carpet rather than walk? Should I press that LifeLine button and throw three of my friends and an office of innocent workers in Massachusetts into a panic?

Reader, I checked the "Continue napping" box.

Of course the inevitable happened. Only about half of my bladder's yield made it to the bowl; the rest soaked my jammies and splattered on my leg.

If any former classmates from Mrs. Kios' English class at Sierra Elementary School in Lancaster, Calif., are reading this: well, Paul hasn't changed much.

Friday, January 8, 2010

I go to pieces, part 2

You may recall me telling you about my trach collar and trach falling apart during a fitful night's sleep in December.

Somehow, I was able to pull myself together and got through the holiday season without another incident.

Two nights ago, the same thing happened. But this time, when I placed the trach up against the hole in my neck, it wouldn't slide in; the circumference of the trach was just a bit more than the circumference than the hole.

I considered panicking. Instead, I sat at the computer and e-mailed my doctor, telling him that I hoped he would be able to help me if I just showed up in Kaiser's Head and Neck Department. Then I threw on my jacket and shoes, tossed the trach in a Zip-Loc bag, grabbed my keys and drove to the Head and Neck Department at Sunset and Edgemont.

The receptionist almost didn't recognize me without the familiar plastic apparatus around my neck, which she has been seeing on me for almost a year. But I held up the Zip-Loc bag with the disassembled pieces and handed the receptionist a note explaining what happened, which I wrote in the elevator ride to the sixth floor.

It was before 8 o'clock and the clinic had not opened yet but the receptionist checked me in and said that the on-call doctor would arrive shortly before 9.

I was the only one sitting in the dark waiting room for 15 minutes or so, then a young kid walked in and took a seat opposite mine. I expected him to catch him staring at the hole in my neck but instead he seemed more interested in my flannel Mickey Mouse pajamas.

After a short wait, a nurse led me to one of the exam rooms. I was hoping that Dr. B1 would have been on duty but another head and neck specialist, Dr. T, walked into the exam room.

Dr. T read my note and then pumped up the chair so that we were eye-to-eye. He held a flashlight above the hole in my neck and peered inside.

"Bummer!" he said.

"What do you mean?" I wrote in my pad. Along with "Code Blue" and "I'll send for the chaplain," "Bummer!" is one of the last things you want your doctor to say when he inspects your breathing capacity.

The hole in my neck, Dr. T explained, was already beginning to close up, which was the reason I could not slide the trach back in. I didn't think that could even happen, I wrote. Dr. T said that trach holes could close in within a matter of hours and when that happens, the surgery needs to be repeated.

He left the room for a few minutes and returned with a tray of instruments and tubes of gel and lubricant.

"This is going to get a little messy," he warned, wrapping a large towel around my chest and shoulder.

My knees were knocking as Dr. T lubricated the rim of my trach hole, and then applied the same gel to a fresh trach. I clenched my eyes tight as the round end of the trach pressed against my neck, and Dr. T applied more and more pressure.

Finally, I heard a soft pop, and then felt the trach slide in. When I opened my eyes, Dr. T was lifting the blood-splatted towel from my chest.

I held the trach with a finger as I rode the elevator down and walked to my car. Two trach-separation incidents in as many weeks doesn't give me confidence that this won't happen again. When it does, the trick will be to get to Kaiser before the trach hole seals up.

And also I should have a pair of Donald Duck pajamas ready to wear for the next emergency. You don't want your doctor to see you in the same jammies twice.

Wednesday, January 6, 2010

Suck it up

If I am not careful, I'm never going to have a chance of getting my face on a box of Wheaties.

When I was hospitalized at Kaiser in January, I was loaned a suction machine to use to clear the secretions that build up in my throat, mouth and trach. After a brief spell of using the machine at home, it got to the point where I was able to clear the secretions without the suction machine so I returned it.

Lately the secretions have gotten pretty severe so my hospice nurse thought it would be a good idea to begin using the suction device again.

It's at my side throughout the day and night, and when I'm not actually inserting the long stem down my throat to suck up the gunk —imagine my lips around a vacuum cleaner attachment and hose— I'm recharging the battery so it always will be ready when I need it.

The thing is, it looks like a bong. To the people who live in the apartment building next door, who have a panoramic view of my living room, it must look as if I'm perpetually stoned.

And the fact that I rarely change out of my pajamas these days just makes me look more like a stoner.

My neighbors upstairs and anyone who walks past my front door, on the other hand, probably think I spent 24 hours a day vacuuming.

The reality is that I wouldn't know the first thing about using a bong, and my disposition toward household cleanliness leans more to Oscar than to Felix.

By accident, I figured out a way of expelling secretions effectively without using the tube or switching on the machine. I close one nostril with a finger, place another finger on my trach to plug it up, and then make like Dizzy Gillespie and blow.

It's the most effective way I know to achieve a secretion-free airway but also the grossest. It's also difficult to control where the secretions land, so I'm not doing it that often.

But I'll do it for anyone who offers me money. Any 8-year-old boy would be pretty damn impressed.

Monday, January 4, 2010

Hair apparent

"Jinxed!", the first film in my Netflix queue, arrived today, and I'm gonna watch it as soon as I update this blog.

A friend expressed surprise that I would want to revisit a Bette Midler film that flopped so badly when it was released in 1982 that it landed Bette in movie jail for six years.

I told him I remembered liking it in 1982.

"Yeah, but you were so much gayer then," my friend said.

Maybe I was gayer in 1982 —I have the Village People and Liza Minnelli ticket stubs to prove it— but I am definitely grayer now.

I noticed this over the holidays in the harsh fluorescent light of the men's room at the Hampton Inn in Agoura Hills.

I'm sure that my new gray hairs are the result of the annus horribilis that just ended, and my anxiety over the new annus just begun.

Of course, an evening watching "Jinxed!" may be no way to begin a brand new annus. It could turn even more of my hair gray.

Sunday, January 3, 2010

Just a spoonful of sugar

I used to be so timid when it came to taking medicine. Ingesting so much as a single aspirin was something I would avoid at all costs.

Getting an HIV diagnosis helped me overcome my drug phobia pretty quickly. Since the early '90s I've been taking a few AIDS treatments at a time, until they stop working, and then I have moved on to a new combination.

In 2009, with my cancer diagnosis, my drug experience exploded. Now, I take more than a dozen medications every day, and I have a handful of others that are ready for me whenever I need them. All of my drugs are lined up on my coffee table, along with a variety of syringes I use to pump the meds down my G-tube.

I'm no longer taking anti-cancer medications. The three that I tried —carboplatin, Erbitux and radiation therapy— all failed for one reason or another.

If one of them worked as reliably as Sorbitol I might not still be adrift at sea on the S.S. Cancer. Sorbitol is intended to treat constipation —caused by another one of my meds— and if I'm not already sitting on the can when I pack Sorbitol into my G-tube, there's a good chance that I'm not going to get there in time.

My hospice physician last week prescribed Lorazepam after I complained about not getting a full night's sleep. Lorazepam also works —it's probably too effective, in fact. After waking up at 6 to read the newspapers and to take my medicine, I've been crawling back into bed and sleeping till 11.

A friend suggests cutting the Lorazepam tablet in half but as it is it's about the size of a grain of salt.

I'm not crazy about padding about the apartment in my jammies till noon so I'll bring this up with the doctor when I see him again.

What I really would like is to see the quality of anti-cancer drugs improved. It doesn't look like that's going to happen in my lifetime, but I hope it does in yours.