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.

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.

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.

Interior design by Marcus Welby

If my neighbors are paying any attention at all, they may be thinking that I'm turning tricks in my apartment these days.

What else could explain the steady flow of unfamiliar gentlemen and ladies showing up at my doorstep this week? Since my family left on Monday morning, the rapping at my door has been incessant.

It began on Monday with a visit from a social worker in Kaiser's hospice program. Shortly after she left, a guy delivering medical supplies arrived, followed closely by a man bearing a plain paper sack filled with drugs from Kaiser's pharmacy. Monday night, a burly fellow with arms the size of tree stumps brought me more medical supplies in three separate trips. Early Tuesday morning, a friend came to visit, and soon after he left more medical supplies showed up. Wednesday, still more medical supplies were delivered, and midday a Kaiser nurse case manager stopped by. Thursday, I was visited by another friend, accepted a FedEx package and a Kaiser physician paid a call on me.

I used to have a reputation as the guy in the building who kept pretty much to himself, leaving home early in the morning and coming home late at night. Now my lights burn nearly around the clock and my front door swings open more than the turnstiles at Union Station spin.

And the feng shui of my home is on the defensive. With all of the new supplies being hauled in, my apartment is beginning to resemble the set of General Hospital.

Let's start with the big oxygen tank that now dominates my bedroom. It's steel; it's industrial green in hue; it stands as tall as a Christmas tree. The thing looks like the missile that Slim Pickens rode bareback in Kubrick's Doctor Strangelove. Yes, this oxygen tank may save my life some day, but couldn't it be designed to fit in with the contemporary single man's bedroom decór? Painted a pale pastel, it wouldn't scream "A SICK PERSON SLEEPS HERE!!!" nearly so loud.

And then there's the oxygen tank's sidekick: a whirring machine on wheels that has the height and girth of R2D2. This device may ultimately turn out to be a life saver too, but wouldn't it be just as effective at half its size?

I can't kvetch much about a few additional pieces that also arrived this week.

The suction machine that arrived on Wednesday doesn't take up that much space. Even better, it's portable and includes a discreet carrying case that would allow me to take it with me the next time I shop at the Grove and think that I may need to clear secretions from my trach while I browse the racks at Abercrombie & Fitch.

The LifeLine device that will enable me to contact outside assistance in the event of an emergency is as compact as it is essential.

And the air mattress doesn't look like it's going to take up a lot of square footage, once I figure out how to blow the damn thing up.

My Kaiser case managers are always cautioning me about accidentally falling in my apartment with no one around to help me up. But the way I see it, each new medical gizmo that gets dragged into my home only raises my tripping potential.

And I've only been part of this program for less than a week. Who knows what surprises the next delivery man has in store for me?

What holiday lull?

Man, I really cleaned up on Christmas loot this year.

In addition to being visited by Santa Claus sometime after going to bed on Christmas Eve, at 9 a.m. on Christmas morning, a woman I'll call Susie Claus dropped by.

Susan is my nurse in Kaiser's hospice program, and I'm one of that program's newest patients. When Dr. B2 referred me to the hospice program after pulling me off my cancer treatments, I didn't really expect the wheels to turn very quickly —certainly not as quickly as they have.

This hospice team ain't messin' around.

I met with Susan in my home for nearly three hours on Christmas Day; had a long meeting with Vicki, the social worker on Kaiser's team on Monday afternoon; and on Wednesday the physician overseeing my case is coming by.

Getting this much attention from a huge HMO like Kaiser during a holiday week is pretty extraordinary, in my book.

During Susan's visit, she performed a handful of miracles while making calls on her cell phone on my living room sofa. Watching her work was dizzying.

She got me access to five new medications to manage pain and cope with some of the side effects from cancer I have been experiencing, and we were able to pick up each new drug on Christmas at one of Kaiser's pharmacies. I'm not prepared to break the seal on the morphine bottle but I sure was glad to get my hands on that constipation prescription.

After I told Susan that I often experience shortness of breath as I move around my apartment, she facilitated an order for an oxygen machine to keep at home. She also ordered an air mattress so I can avoid getting bed sores, and a suction machine so I can clear the secretions that build up in my throat more effectively. (Susan warned that the company responsible for delivering the equipment is notoriously unreliable, and sure enough, I'm still waiting to come through, three days later. But at least I know that relief is on the way.)

Vicki, the social worker I met with on Monday, is every bit as efficient as Susie Claus. During the two hours we had together, she helped me advance some other key needs, including a MedicAlert bracelet to summon for help in case of an emergency and special telephone devices to help me communicate better despite my speech and hearing impairments. And Vicki has been nagging the medical equipment company to deliver the items that I need.

I'm not going to pretend that everything is beautiful these days in the Life of Paul. Any way you look at it, it does suck to be sick enough to require hospice care. There are other practical matters that I'm addressing that I'd just as soon rather not face.

But I know that these things have to get addressed. With the support of Kaiser's team and my family members and friends, I'm tackling these issues, too.

Holiday hiatus

Apologies for neglecting this blog, gang!

A bevy of family members swept into town last week for the holidays, so my energies were directed toward them. But they all have gone back to Tennessee, Colorado, Arizona and San Diego now and I'm settling back into my routine, so I'll be posting the latest news over the next day or so.

Here's a photo of me and my dad, who spent the past four nights with me. I hadn't seen Dad since my mom's funeral in September 2007 so it was wonderful being with him again.

As Dad left my apartment to head to LAX this morning, he turned around, gave me a thumb's up and said "You're going to make it, Gus. You're going to make it."

Dad, I'll try my best not to let you down.

I go to pieces

Just when I thought I had seen it all, my trach showed me Wednesday morning that I still have a thing or two to learn about living with fake body parts.

After climbing into bed around 11 on Tuesday, I tossed and turned for hours, unable to get comfortable enough to sleep.

For one thing, Dr. B1 had re-dressed the wounds on my face on Tuesday afternoon, and I didn't have a lot of confidence that the bandages were going to hold through the night. He held the dressing in place with a single strip of tape; when I replace my own dressings, I all but lock the bandages into place with long strips of duct tape.

Also, Dr. B1 replaced my trach collar with one that felt differently around my neck and I was having a hard time getting used to it.

Finally, my left eye was popping open every five or 10 minutes, which kept a dream that I was having about Jon and Kate Plus 8 from getting under way.

I finally drifted off to sleep around 3 a.m.

About an hour later, I woke up after my nose rolled over something hard and smelly. To my alarm I saw my trach on my pillow —not only the removable plastic cannula that fits inside the trach, but the trach itself. And the trach collar was dangling from my neck.

I bolted out of bed, ran to the bathroom and put all of the stray pieces back inside my neck, where they belonged.

What happened? Beats me, gang.

Maybe one of Jon and Kate's Plus 8's brats were monkeying around with the trach in the dream that I had. Or maybe I had removed the trach to slip under my pillow so that the Trach Fairy would come visit.

I haven't checked the commodities listings for Fake Body Parts lately; a trach with less than a year of wear might yield five or ten bucks in today's Fairy market.

Whatever it was, I can't risk lose any of my fake organs just because I can't get to sleep at night and start clawing at my body in a reckless, willy-nilly fashion.

Tonight, I'm giving my G-tube the duct tape treatment.