Friday, July 31, 2009
A not-so-close shave
Dr. B1 does so much for me, and I do so little for him.
So when I woke up at 4 this morning so I could get to the admitting desk at Kaiser Hospital by 6 a.m. for my biopsy, I thought maybe it was time to do something nice for my doctor for a change.
If Dr. B1 is going to be staring at my homely mug for the duration of today's procedure, I figured, the least I could do is make it pretty for him. So I decided to shave.
Remember those Norelco commercials that ran on TV every Christmas when "Frosty the Snowman" was broadcast? You know, the ones with Santa Claus riding a Norelco razor over hills of snow?
Well, when I run my electric razor over my misshapen mug, my face reminds me of the hilly terrain in those Norelco spots. Shaving is a miserable experience —made even worse by the near-total numbness in the lower third of my face, which also seems to be hardening into concrete— and I don't do it often.
Reader, I should have left my puss alone.
In mid-shave, my electric razor sputtered out. Now my face is half-smooth, half-whiskery. I look like the front yard of a Beverly Hills estate if the gardeners went on strike in the middle of mowing the lawn.
I should have known that manscaping my mug today would lead to disaster. When Dr. B1 sees me in a few hours, knocked out on his operating table, who knows what he'll think?
I expect when I come to later today I'll find myself tethered to a bed in Kaiser's psychiatric ward.
Thursday, July 30, 2009
Here's a thriller for you
Michael Jackson and I both were born in 1958 and we both lived a big chunk of our days in the San Fernando Valley, but parallels between my life and Jacko's pretty much dry up after that.
Well, now there's a new link tying the King of Pop with yours truly, the Prince of Pap. We're bookends in Dana Miller's Out and About column in the new edition of Frontiers In LA, Los Angeles' surviving gay news publication.
It's a treat to be mentioned in Out and About, which, in an obvious act of kindness toward readers of my generation, bumped up the size of type in the print edition from near-agate to 12 points with cushy leading.
Mr. Miller was absolutely correct in leading the column with Jackson and saving me for the end. He writes about a 1984 poolside meeting with Jackson in which the singer wore "Vulcan-like prosthetic ears" and had colorful things to say about the music business. I expect the bit about Spock ears to be picked up by the A.P. in the next news cycle.
Mr. Miller also describes Jacko "a tad daft" and generously leaves my mental state unaddressed.
If you're arriving at this blog after reading about it in Out and About, welcome. Put up your feet and stay awhile. I can't promise you tales of prosthetic ears, but wait till you hear about my rubber tubes and dentures.
Wednesday, July 29, 2009
The unkindest cuts
In Ronald Reagan's day, the misery index was the sum of the rate of inflation and the unemployment rate.
For me, my misery index is the sum of physical pain and anxiety about my health. As I count the hours to my biopsy on Friday and cope with burning sensations and swelling in my mouth, my misery index is soaring.
But what I really want to bellyache about tonight is Governor Schwarzenegger.
Yesterday, the governor signed a state budget passed by the Legislature but only after making $489 million in additional cuts, including $85 million in state general funds from HIV/AIDS programs.
According to a statement by AIDS Project Los Angeles, "the governor's signed budget includes the elimination of state general fund support for all HIV/AIDS programs except HIV epidemiology and the AIDS Drug Assistance Program (ADAP) —a total reduction of more than $85 million. This leaves California’s Office of AIDS with only 20 percent of its funding for programs like HIV education and prevention, HIV counseling and testing, home health and early intervention."
Cuts in AIDS programs are personally scary to me. Just the other day, I picked up another month's supply of five HIV medications, which I access through ADAP. While Schwarzenegger spared ADAP in Tuesday's round of budget cuts, other programs that are just as worthwhile were gutted. And there is no guarantee that ADAP funding won't get reduced some time in the future.
Schwarzenegger crows about not resorting to tax increases in this year's budget —he mentions that four times in a brief statement announcing the new budget— and he also points out that the budget leaves California with a $500 million reserve fund.
Methinks that dipping into the reserve or imposing some kind of tax would have eliminated the need for the governor to veto important programs. Those vetoes raise the misery index of all of us.
If you agree, contact your legislators and let them know.
Tuesday, July 28, 2009
Biopsy or bust
In just a few days, I'll be back under the knife in the operating room at Kaiser.
I hope they wheel me into the recovery room when that nurse who thinks I am a doppelganger for Ben Stiller is on duty. Ben Stiller is an even hotter commodity than he was last winter, so rumors that the star of "A Night at the Museum: Battle for the Smithsonian" is recovering from surgery at Kaiser would create even more of a stir than it did the last time I was in the hospital.
Trouble is, the more famous Ben Stiller gets, the less likely it becomes that anyone whose vision is superior to Mister Magoo's would mistake me for him. But maybe I could rustle up a faux Anne Meara lookalike to sit by my bed and moisten my forehead with a washcloth until I come to, just for fun.
Star impersonations aside, there's a lot riding on Friday's procedure.
My face has all of the pliability of a Grecian bust at the Getty Villa. Still, Dr. B1, my head and neck surgeon, believes he can get his sharp tools into my mouth far enough to capture tissue at the back of my tongue for a biopsy —without fracturing my jaw in the process.
On Monday, I asked Dr. B1 how he would know if my jaw fractured during the procedure.
"We probably wouldn't know," he replied, referring to the rest of the surgical staff. "But you would be able to tell, from all of the pain."
I have complete confidence in Dr. B1, of course. These days, I barely flinch when he pushes the fiber-optic camera in my nostrils and drops it down my throat. If anyone can pry open my mouth wide enough to capture tissue off my tongue for a biopsy, he can.
Before I get knocked out on Friday morning, I'll slip a black Sharpie between my fingers.
Just in case anybody on Kaiser's nursing staff wants an autograph after I come to.
Monday, July 27, 2009
Monkey business
I've been walking with a spring in my step all day.
Last night, under balmy midsummer skies, something magical happened: I got hit on!
Yes, you read correctly. In a venue where there were as many as 17,735 other people to get fresh with, someone chose ME —trach-sportin', G-tube-swingin', toothless AARP-card carryin' me— as his object of desire.
Here's how it happened: I was at the Hollywood Bowl, killing time between acts with a group of friends, waiting for headliner Grace Jones to hit the stage, when one of my friends made a remark about about monkeys.
Always eager to come off as hip and wise, I scribbled furiously in my note pad before the conversation went in a different direction. "Hey, remember J. Fred Muggs?" I wrote.
My three friends, all of whom are younger than me, stared at my pad and shook their heads. "Who?" one of them asked. "Never heard of him," another said. "Must have been way before our time, Paul," the third suggested.
"Well, he's a chimp," I wrote, holding the note pad over my face to cloak my embarrassment.
My friends just shrugged. How could these men not be familiar with J. Fred Muggs, the chimp mascot of the Today Show?
I slithered to my seat to wait for the show to resume.
I squeezed past a half dozen pairs of knees and picnic coolers and found my assigned place: Seat 109 in Row 1 of Section N2.
Just as I parked my fanny on the bench, a man several spaces to my left slid to my side so fast I'm certain that he got third-degree splinters. "HIIIIII!" he said in a voice that would have made Alan Sues sound like Jessica Tandy in the final reel of "Driving Miss Daisy." "My name is JOHNNY!!"
Johnny squeezed my thigh hard enough to bruise the denim and my skin. I pointed to my mouth and shook my head no, hoping Johnny would get the idea that I was not able to speak.
He stared at me silently, fingers still digging into my thigh. Then his eyes widened, and he started to sign the letters of the alphabet. I was happy to give his hands something else to do.
I opened my note pad. "Sorry, Johnny," I wrote. "I don't sign."
Johnny snatched my pen and note pad and from my hands and turned to a fresh page. "MY NAME IS JOHNNY," he scribbled, filling up an entire page.
I was tempted to explain to Johnny that I already knew his name and that I was able to hear him fine. But then I thought, the longer he kept his hand wrapped around my pen, the longer he would keep it off my thigh.
"I'M JUST HANGING," Johnny wrote in my pad. Flipping to a fresh page, he continued: "WHERE DO YOU LIVE?" And on yet another clean sheet: "I AM FROM THE VALLEY!"
Johnny flipped to another page —a brush fire in Santa Ana winds could not have consumed paper in my pad faster than he was. But rather than reveal his Zodiac sign, Johnny confided: "I AM VERY DRUNK."
Johnny's gaze locked onto me and he began to lean forward. He was either going to collapse, throw up or kiss me —or all three, in reverse order.
Just then a woman grabbed Johnny's shoulder to pull him back. "Who's your friend, Johnny?" she queried.
The lights went down, Grace Jones took the stage and Johnny jumped up, waving his arms and swinging his hips. I'm certain he had forgotten all about me at this point. At any rate, he and the woman disappeared after three or four songs.
It was nice to be desired, however briefly, even by a drunk.
When I got home I hopped online and looked up J. Fred Muggs. Turns out that Muggs was before even my time. He left the Today Show the year before I was born.
I wasted no time emailing my friends the news.
Saturday, July 25, 2009
Culture Club
At the end of my appointment on Friday in Kaiser's Infectious Disease clinic, the nurse slipped me a small package. I gave her a quizzical look and she said, "Just follow the instructions inside."
I've never gotten a homework assignment from my nurse before. Her tone had me a little spooked so I waited till I was in my car before peeking in the package.
Inside was a slim tube with my name on it, a sheet of paper, a plastic bag with a Biohazard label on it, a sturdy envelope addressed to my doctor's office, and the sheet of instructions that the nurse mentioned.
The heading on the page —"Package Insert for Personal Use Kit"— didn't reveal much but once I started to read the instructions, I caught the gist of the assignment. Kaiser wants me to float the paper in my toilet bowl, poop, collect some of the poop in the tube and then mail it back to them so they can do a stool culture.
The envelope is stamped "Business Reply Mail." Well, I guess you can call it that.
You might think that any average guy handed this assignment would find it simple enough. My first reaction, however, was to panic.
What if the paper sinks in the toilet water? What if I can't get the poop in the tube? What if I drop everything into the bowl? What if my mailman refuses to pick up smelly outgoing mail?
I wrote my concerns on a sheet of paper and marched right back to the clinic to tell them what was on my mind. They attempted to calm me down by giving me a plastic tub, about the size of the "I Can't Believe It's Not Butter!" container, to add to my personal use kit.
The alternate strategy is to poop into the tub instead of the toilet bowl. They didn't provide a lid, so I guess I would still need to collect some of my business and stuff it into the tube.
So I have an option No. 1 and an option No. 2. The assignment needs to be postmarked by Monday, so there's time to sort this all out. The task is top priority on my to-do list this weekend —I mean, my to doo-doo list.
I'm not always able to predict or control when nature calls, so to be sure I don't miss the opportunity, I'm toting my poop kit wherever I go this weekend.
Come Sunday night, I know I'll be tempted to mail the sample back to Kaiser in an actual "I Can't Believe It's Not Butter!" container. But I really don't have any way of knowing that the Kaiser employee who opens the mail has a sense of humor. Or maybe he or she would have too much of a sense of humor, and stick the sample in the fridge in the break room.
Best not to do anything I'll want to deny later. After all, that poop sample will have my name on it.
Just like this blog post.
Friday, July 24, 2009
A wise man, indeed
Learning that Dr. Joel D. Weisman passed away on Saturday at the age of 66 jolted me back to an era of the AIDS epidemic that exists only in the memories of those who lived through it.
Dr. Weisman was one of the first doctors to identify the disease that later became known as AIDS, and the co-author of a landmark report in 1981 in the Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report. Dr. Weisman was also one of the doctors whose patients I visited while volunteering for AIDS Project Los Angeles in the mid- to late 1980s.
Sherman Oaks Community Hospital was one of the many sites where APLA volunteers visited with AIDS patients. In those days, many hospitals in Los Angeles had dedicated AIDS units that housed patients suffering from opportunistic infections caused by AIDS. Hospital stays could last weeks, and many patients died in their hospital beds or were transfered to AIDS hospices. Severely limited treatment options meant that the average length of time from diagnosis to death was just a few years.
My role was to spend time in the AIDS unit at Sherman Oaks Community Hospital and sit with patients who accepted visitors, and support the nursing staff. It wasn't easy work.
Whenever Dr. Weisman or another doctor entered a room while I was visiting a patient, that was my cue to say goodbye and move on.
I don't think Dr. Weisman knew my name, but he knew why I was in the ward and he was always gracious and kind to me.
I eventually stopped being very useful as a hospital visitor. Patients who were alert, engaging and funny were easier to visit than the patients who were angry, depressed and silent. When I realized that I was passing by the rooms that housed difficult patients and spending time with patients who were in good spirits, I dropped out of the volunteer program.
On Sunday, I ran into a friend named Rick at an Outfest screening. Rick is the man who was my mentor in the hospital visitation program, and he lasted much longer in the gig than I did. I think he continued volunteering all the way up till the day that Sherman Oaks Hospital closed the AIDS unit because fewer AIDS patients were being hospitalized.
Rick always had the inside scoop on all of the doctors treating patients in our unit —Dr. Rothman, Dr. Scarsella, Dr. Rogolsky and a few others— and it was always fun to chat with him when we were away from the unit. To us, these men were heroes, pioneers and mavericks.
We also knew these doctors as gentle, human men who were as emotionally affected by the ravages of AIDS as anyone.
When I saw Rick on Sunday, neither of us knew that Dr. Weisman passed away the day before. But I bet that the news of his death also jolted Rick back to those plague years of the '80s and '90s.
The Outfest film that Rick and I watched on Sunday was a gay romantic comedy with lots of sex and not one mention of AIDS. Back in the '80s and '90s AIDS was embedded in the fabric of the gay community. It's a different era now.
It was a privilege to be one of the many people to work in Dr. Weisman's presence, even in my small capacity. It was also unforgettable. I hope that the times we lived will never be forgotten.
Dr. Joel Weisman dies at 66, among the first doctors to detect AIDS
Thursday, July 23, 2009
Survival of the baddest
I was plopped on the sofa, enjoying my morning Isosource cocktail while watching an episode of The Bob Newhart Show and speculating on Carol's true gender when I spotted something large and furry fluttering in the corner of my eye.
At first I thought a bat was hovering over my kitchen table. After putting down my can of Isosource and moving cautiously toward the kitchen, I realized it wasn't a bat at all. It was the biggest fly I had ever laid my eyes upon.
The fly was drawn to my kitchen light, meandering in an erratic pattern just above my head. I figured it either had a blood alcohol level of .05 or it was texting while buzzing.
I didn't know or care how the fly had gotten into my apartment; all I knew was that I wanted it out. If only I had splurged on that fly swatter G-tube attachment that I saw the other day while leafing through Down the Hatch: G-Tubers Quarterly.
Negotiating with the beast was out of the question.
What if the fly landed on my chest while I slept and spotted my trach with one of its 500 eyes? It might get curious about what was beyond the dark hole and peek inside.
The fly was too big to fit in my trach, but like a lot of living beings, it probably had a misguided perception of the size of its thighs. The fly could attempt to enter my trach, and then get stuck halfway to my throat.
The humane act would be to stun the fly and then toss it out the window. There it would lie quietly in the weeds below my balcony for a while and then, after regaining its strength, it would limp off to a more benign environment —say, the Dumpster near my bedroom window.
As I crept up on the fly, I reached for a newspaper to roll up and take a whack at it, but then tossed it aside. The paper happened to be the L.A. Times and God knows that the Times no longer has the heft to pass for a defensive weapon against a fly.
Then I opened a binder that I use for storing receipts from my medical appointments and tried to capture the fly by slamming the covers shut.
Blame the Isosource for making me inebriated with aggression. Reader, I slapped the binder shut and flattened the lil' menace.
When I opened the binder, a few of the fly's legs were still twitching, so I slapped the binder again, only harder.
I know what you're thinking: Dude, you're such a hypocrite.
Here I am, waging the fight of my life against cancer and yet I'm willing to glibly snuff another creature's life. What gives me that right? That fly might have had a family or a position of respect in the insect community. Maybe it was a direct descendant of Vincent Price or even Jeff Goldblum.
I don't care. Go on, report me to PETA so they can thunder down on me just like they did with President Obama. I have enough problems without also having to worry about my home being overrun with flies. I killed the bugger and given another chance I would kill again.
Cancer, let that being a warning to you. You won't get a smidgen of mercy from me, either.
Wednesday, July 22, 2009
AIDS gone A.W.O.L.
I learned only yesterday that I will see my HIV doctor at Kaiser on Friday morning.
It's no stretch to call this visit a reunion. The last time that I saw Dr. Towner, my primary care physician in the Infectious Disease Department at Kaiser, was eight months and 76 medical visits ago.
Last November, Dr. T set up a colonoscopy for me but when I realized that preparation for the procedure involved drinking a large volume of a nasty laxative to irrigate my bowels, I protested.
"Doc! You gotta be kidding!" I said, after reading the instructions that were mailed to me in advance of the procedure. I wasn't swallowing much in those days, but I still could talk.
So Dr. T liberated me from that colonoscopy.
The main purpose of my visit with Dr. T on Friday will be to ensure that my health is sound enough for my biopsy on July 31. But I hope Dr. T also will send me to the lab for a long-overdue checkup on my HIV viral load.
I'm nostalgic for the days when I was merely an AIDS patient —and a dull one at that.
Since cancer burst into my life in January, AIDS has become my stepchild disease. Managing cancer has been more than enough to keep my hands full. Most days, I think about AIDS only when I grind up or pour my HIV meds to send them down my G-tube.
So seeing Dr. T on Friday will help me get back in touch with my inner HIV.
And that's not all: Now that I can ingest laxatives through my G-tube, Dr. T may put the colonoscopy back into play.
Sphincter, get ready for your close-up.
Tuesday, July 21, 2009
Red-letter day
There are big fat red circles all over my calendar in the last few weeks of July.
I've got three circles around one date alone. Sunday, July 26 is a big day because it's Mick Jagger's birthday, my youngest nephew's birthday and it's the day that Sarah Palin has promised to step down as the governor of Alaska. (I've marked that occasion in red lipstick.)
On Monday, I found out that Friday, July 31 also will be a really big day for me. Dr. B1, my head-and-neck surgeon at Kaiser, emailed me yesterday and said that he has time in his schedule that day to perform a biopsy of that suspicious area on the left side of my tongue.
I wasted no time in emailing back and telling Dr. B1 to count on me showing up in his operating room. That biopsy, along with my June 25 PET scan, should give me and my doctors solid information about how successful my chemotherapy and radiation treatments in winter were, and what the next steps should be.
Over the next several days, I hope to hear more about Dr. B1's plans for the upcoming biopsy.
Color me bi-curious in a big way. The major question for me is, how does Dr. B1 plan to get his instruments past my lips to reach the patch of my tongue where cancer cells may be lurking?
My jaws get more rigid by the day. If researchers could figure what's making my jaw so tight and somehow replicate that tightness in other parts of the human body, I bet they could lick the teen pregnancy problem once and for all.
Short of prying my mouth open with the Jaws of Life, I don't see an easy way for Dr. B1 to get the tissue sample he needs.
I think I'm going to need plenty of anesthesia. I hope that Michael Jackson's doctors haven't bled local supplies dry.
Monday, July 20, 2009
I sing the body . . . plastic
I began the week lifted by renewed gratitude for my plastic and rubber body parts.
Early Sunday morning, I was washing a load of clothes in the laundry room of my apartment building. Because the weather in L.A. has been swelteringly hot, I doffed my shirt before stepping out. The sun wasn't even up, and I figured it was safe to go commando outside of my apartment.
Hang around my neighborhood long enough, and you'll see sights that are far more shocking than a man sporting a plastic hose from his tummy.
As I was transferring wet, laundered clothes to the dryer, my G-tube dangled low and I accidentally slammed the door with half of my G-tube inside in the dryer.
If the G-tube was comprised of flesh and nerve endings, I would have let out an Edvard Munch-like silent scream and buckled over atop the dryer, probably unconscious. By the time the cycle ended and I came to, my tube would have been charred like a hot dog left on the grill too long and I would have had second-degree burns on my face.
Instead, with nary a wince, I simply popped the dryer door open and calmly freed my fake appendage.
I'm taping my G-tube to my shoulder for the duration of this heat wave.
Sunday, July 19, 2009
Sign of the times
The longer that I go without a voice, the more I realize that I should develop more means of communication than scribbling in a notepad and holding it up to people's noses.
Learning American Sign Language has long been on my to-do list, ever since I joined a bicycle training ride for deaf and hard-of-hearing cyclists a few years ago. I'm about 50-percent deaf, and I was eager to meet other cyclists who are hard-of-hearing. But when the group stopped for breakfast at a café along our route, and spent the meal excitedly conversing with one another in ASL, I felt like the odd man out.
I decided then that I wanted to learn ASL, and I even shared that goal with a few others, who were immediately supportive.
I'm pretty skilled at nudging life goals to the back burner, and
like any language, ASL requires time and discipline to learn. So I've flaked out on my ASL ambitions.
Quite by surprise, I caught the ASL bug again on Saturday night.
Every summer, the clinic where I work hosts a fund-raising bash featuring dozens of restaurants and beverage servers, scores of wineries, mystics, a DJ and other kinds of entertainment to ensure that our guests have a good time.
I was hopping from booth to booth taking photos of the servers at the event, introducing myself by handing them a note asking permission to shoot and getting their names.
One of the servers read my note and then handed my pad back to me. Rather than talk to me, he began to sign.
I wrote another note, explaining that I could hear —I just couldn't talk. He apologized for presuming that I knew sign language, and said that I was welcome to take photos. His name was Tyler.
Late in the evening I passed the booth again. The crowd was thinning out and there was no one in line at Tyler's booth. I walked up and handed a note to him asking how the evening had gone.
Tyler asked me my name, so I wrote it in my pad.
"I'll show you how to finger-spell your name," Tyler said. he removed a rubber glove that he was wearing on his left hand and made the symbol for "P," then "A," then "U" and finally "L."
"Now you try it," he said.
I held up my right hand and mimicked Tyler's symbols. I have a gimpy right thumb that doesn't extend properly, so I messed up a few of the letters and I hope I didn't finger-spell a four-letter word that was offensive.
I know a little about the deaf community, so I wrote another note to Tyler. "Don't deaf people have 'deaf names' that aren't finger-spelled?" I asked.
Tyler nodded. "I used to have hair down past my waist," he said, "so my deaf name is a gesture that suggested 'long hair.' " He went on to explain that a deaf person doesn't come up with their own deaf name; they have to be given their deaf name by another deaf person. I remembered learning that a few years ago.
"OK, now, here's the alphabet," Tyler said. His left hand formed the symbol for all 26 letters, and he watched my hand as I struggled to follow his example.
It was pretty frustrating —especially with that damn gimpy thumb of mine— and some letters were easier than others. But I didn't fall flat on my face.
Tyler took off his right glove and extended it across the counter. "Good luck to you," he said. "Maybe I'll see you here next year."
Maybe we will see each other next summer. And who knows? Maybe by then, I'll know a thing or two about ASL.
Friday, July 17, 2009
Today's post is rated R
I hope that I'm not being too frank when I say that I put whatever sex life I had on ice after getting a G-tube and a trach.
My perception of my own sex appeal had already dropped a notch or two last summer when I got dentures, but the trach and G-tube pushed it off the charts. You'd be surprised at how unsexy plastic tubing for body parts make you feel, and I gotta figure that any potential sex partner would feel the same way.
Oh, I bet that if I really applied myself to do the research, I would discover a community of fetishists out there who don't give a hoot about six-pack abs but who really get turned on when a guy unbuttons his shirt and a 12-inch plastic hose spills out from his tummy. Finding those rubber-chasers, however, just hasn't been a priority.
A satisfying evening for me means unwinding on my couch reading and watching a DVD or two.
As far as sex is concerned, well, lately, I've been pretending that the men who ring Mary Richards' doorbell in "The Mary Tyler Moore Show" actually show up at my place after Mary brushes them off. Mary has a new beau in practically every episode, and if they get as much as a chaste kiss from her before the credits roll, they're lucky. So this steady parade of frustrated lawyers, salesmen, airplane pilots and Minnesota Vikings keeps me busy.
Or if I'm trying to take my mind off sex, I reach for some bland reading material.
Last night, that reading fare was the July-August edition of the AARP Bulletin.
The AARP Bulletin and its upscale cousin AARP: The Magazine have been showing up in my mailbox regularly ever since I finally bit the bullet and sent 15 bucks to AARP and became a dues-paying member. You can guess the kinds of articles that fill their pages: editorial pieces on Medicare, estate planning and thwarting calls from telemarketers and ads for cell phones with large numerals, retractable awning and Dr. Scholl's leather comfort loafers.
By reading AARP publications in favor of glossies like GQ and Vanity Fair, I can feel secure that no else my age is getting much action, either.
The current AARP Bulletin, however, turned that perception upside down. On Page 25, opposite an item on Medicare Part D reform and a portrait of Ted Kennedy, is a full-page advertisement that would make my jaw drop if I could move it at all.
The headline —which is trademarked– is "Sex. It's Never Too Late to Learn Something New" and the photo shows a man who may be wearing a tuxedo wrapping his arms around the waist of a woman in black pumps and a naughty red dress. They're leaning against a pool table and the energy I pick up from the ad tells me that any second they will be sweeping the billiard balls off the table and hopping on top.
The ad copy promotes a "discreet home video" showing "real people demonstrating real sexual techniques! Nothing is left to the imagination!"
There are four videos in all: Volume One: Sex and Love: Lasting Pleasures features "imaginative sensual foreplay and lovemaking . . . new positions to try . . . experimenting with 'new intimacies' . . . plus finding humor and joy in a long-term loving relationship." Volume Two: Advanced Sexual Techniques spotlights "detailed instruction for intimate love-making beyond intercourse . . . ultra-sensual massage . . . exciting games . . . plus specific positions that provide stimulation AND satisfaction!"
If you buy those videos, you get two additional videos free: 26 Incredible Sexual Positions ("guaranteed to surprise and inspire you") and 6 Amazing Better Sex Techniques ("proven tips and turn-ons").
When I saw this ad, I started blushing and breathing heavily through my trach, and I had to hurriedly turn the page before my G-tube started to melt.
Six pages later, near an ad for a two-seated motorized wheelchair, I spotted another amorous couple. This ad was for a "revolutionary new" gadget called a "Vacurect" which seems to be a type of vacuum that doesn't care about the dust bunnies beneath your bed. I should just leave it at that, except I did find it interesting that you apparently can get your hands on the Vacurect by billing it to Medicare.
Does the "R" in "AARP" stand for randy? The AARP Bulletin was getting me so hot and bothered, I just had to put it away in a drawer in my nightstand.
I spent the rest of the evening watching more episodes of "The Mary Tyler Moore Show." In one of them, Mary dated an IRS agent about a dozen times and still hadn't put out.
Mary Tyler Moore is 72 years old now, and very well may subscribe to AARP publications. If she's sending away for sex videos and Vacurects, I don't wanna hear about it.
Wednesday, July 15, 2009
Goodbye to a friend
On Monday, July 13, my friend Mark Etzel died.
The e-mail bearing that news was relayed to me by a friend at AIDS Project Los Angeles. APLA is where I met Mark in the early 1990s; I was working in the organization's Communications Department, and Mark came on board to work in Government Affairs.
I quickly became fond of Mark, and I was grateful for the many opportunities we had to collaborate on projects. Mark struck many people as being serious and intelligent but he also had an impish side that revealed itself on the occasions when he stopped by my office to chat, usually at the end of a long day.
Mark got seriously ill when he was at APLA, and then some time later he left the organization to work at the UCLA-Semel Institute, Center for Community Health. There, Mark served as the Executive Director of the Center for HIV Identification, Prevention, and Treatment Services (CHIPTS) for more than a decade.
In 2002, I was part of a team of people at APLA working on a new publication focused on HIV, and Mark was selected to be the guest editor of the first edition. Before that project was complete, however, I lost my position at APLA, bringing our working relationship to a halt.
Post-APLA, I tried to wing it as a free-lance marketing and publications consultant for a few years, and several of my clients were former colleagues at APLA, including Mark, who had the grace to give me several opportunities to work with his team at CHIPTS. Mark was doing important work in the realm of HIV at CHIPTS and it was a privilege to support that work in my small way, and to learn from him. Having him as a boss was a thrill.
After a while, it became clear to me that I didn't have the temperament or appetite for risk that free-lancing requires, and I was lucky to land a steady full-time job. Around that time, I learned that Mark was suffering from lymphoma.
I wasn't in touch with Mark's partner, family or co-workers so I don't know all of the ups and downs of Mark's illness. From second-hand reports provided by friends remaining at APLA, I do know that Mark bounced back from being gravely ill at least once. I looked to Mark for inspiration and motivation and even courage when I got my cancer diagnosis in January.
Earlier this year, Mark's colleagues at UCLA hosted a reception in his honor. The day of the reception happened to be the day that I was scheduled to begin chemotherapy, so I couldn't make it. But Mark got word that I was ill with cancer, and several times this year, he took time to send cards with notes of encouragement to me and offer to run errands for me. I wrote back a few times and intended to continue corresponding.
In the e-mail announcing Mark's passing, Dr. Mary Jane Rotheram-Borus, Principal Investigator at the UCLA Semel Institute Center for Community Health, wrote: "Mark Etzel has lost his battle with cancer. He passed away peacefully at home on Monday, July 13, surrounded by his family. He was a strong and caring individual, a valuable asset to the University as well as to the larger Los Angeles community. The leadership, strength, and clarity that his presence brought to our community will be a tremendous loss. . . .
"We have lost a wonderful colleague, a great friend and an incredible man."
A rosary for Mark will be held at 10:30 a.m. on Saturday, July 18, with a funeral service to follow at 11 a.m. at Blessed Kateri Catholic Church, 22508 Copper Hill, Santa Clarita.
The photo above was taken by Paul Antico.
Tuesday, July 14, 2009
A real head case
My appointment on Tuesday with Dr. B1 was shaping up as a biggie, so I was thrilled when my best buddy offered to leave work early and join me.
I sometimes feel guilty when I'm with my doctors and they have to wait on me to write my questions to them in longhand. I feel even worse when my doctors struggle to read my handwriting. It's helpful having a someone with me who can speak directly to my doctors, and it's even better when that person is someone who usually can tell what's on my mind just by reading my expression.
Just minutes after we took our seats in the waiting room for Kaiser's head and neck department, a nurse manager told us that Dr. B1 had been called to the hospital on an emergency. Dr. Rhonda Lubka, another physician in the head and neck clinic, would see me instead, the nurse explained.
My heart sank. But I also knew that if I was that guy in the hospital with an emergency need, I would want Dr. B1 there.
The wait for the appointment was long. I filled up two sheets in my legal pad chit-chatting with my buddy, and I ran out of conversation. So I tried something new: singing.
When I had a voice, my singing could bring prisoners of war to their knees begging for mercy, but gimme a pen and some paper and I can be a regular Enrico Caruso. To pass the time before my appointment began, I decided to croon tunes from a CD that has been playing in my car for weeks.
"I am a lineman for the counteeeeeee," I wrote, adding musical notes and squiggly lines around the lettering.
My buddy stared quizzically at my pad. "Are you serenading me?" he asked.
"Like a rhinestone cowboy," I warbled in script.
My buddy grabbed the pen and pad from my hands. Continuing the Glen Campbell theme, he wrote "Southern nights." His musical notes looked more authentic than mine.
By the time I got to "By the Time I Get to Phoenix," our hootenanny was over. The nurse called my name and led us into Dr. Lubka's examination room.
Once I sat in the chair to wait for the doctor, I jotted down the topics that I hoped would be covered in the visit.
First, I wanted to find out if Dr. B1 had reviewed my June 25 PET scan, and what his take on it was. Next, I wanted to find out what Dr. B1 thought about doing a biopsy. I hoped to hear Dr. Lubka say that my airway was clear enough to consider having my trach removed sometime soon, and I wanted to find out what I should be doing to treat all of the pain I've been feeling in my mouth, jaw, gums, chin and head.
From the moment Dr. Lubka extended her hand to greet me, it was clear that I was not dealing with a mere understudy, or a substitute teacher unfamiliar with the lesson plan.
Dr. Lubka said that she had talked with Dr. B1 about me before he left to go to the hospital, and she called up my medical records on her computer. She looked at my MRIs, CT scans and the recent PET scan and she dropped a laryngoscope down my nostril to try to get a look at the suspicious tissue revealed in the most recent scan.
I may be oversimplifying Dr. Lubka's comments, but she seems to think what most of the oncologists believe is cancer may in fact be dead scar tissue, or "eschar."
No conclusions were reached today about the next steps in my treatment. Getting a biopsy in the affected region of mouth is complicated by the immobility of my jaw. Under anesthesia, my muscles may relax but forcing my mouth open could break my jaw.
Entering the problem area through my neck with a knife is risky because I might not heal properly. (How do you think Frankenstein's monster got those rivets?)
Instead, Dr. Lubka promised that she would talk to Dr. B1 and said that I would hear from him very soon.
I wrote "thank you" in my pad and then we left.
On the way home, I heard "Wichita Lineman" the way it was meant to be sung. Maybe someday I'll get to sing along.
Monday, July 13, 2009
I flouted the law, and the law won
I would love to kiss the hand of the traffic engineer who came up with the brilliant idea to prohibit left turns on busy thoroughfares during rush hour.
Because left turns are illegal on the eastbound stretch of Melrose Avenue that I take to get home from work, you can drive in the left lane and not have to stop, unless you hit a red light.
I always drive in the left lane when the ban on turning is in effect. And I was making good time on my evening commute on Friday until the motorist ahead of me decided to make a left turn, holding up me and everyone behind me.
I tapped my horn to get her attention and pointed to the "No Left Turns Between 4 and 7 P.M." sign.
No reaction.
I honked again, holding the horn a bit longer.
The driver continued looking ahead, and her left turn signal continued to blink.
Then I pressed my hand on my horn and held it there even longer. She looked at me in her rear-view mirror, and then extended her left arm out the window. She probably thought that her turn signal was broken, so she seemed to be hand-signaling to the drivers behind her that she was going to turn left.
Man, did that tick me off. So I just kept my hand on the horn. I made like Dizzy Gillespie and BLEW.
I could tell it wasn't going to change her mind about turning and I knew that I looked like a dork, but I couldn't shout "Move it, cupcake!" so blowing the horn like a six-year-old was my only option, short of being patient and accepting the fact that my arrival home would be delayed by 90 seconds or so.
Finally she turned. My eyes shot darts in her direction. With luck, one of them punctured one of her tires.
Sunday arrives, and I find myself heading west on Santa Monica Boulevard toward Century City for a work meeting.
All of the elements of Randy Newman's "I Love L.A." were present: the eternally shining sun, the mountains, the trees, the music blaring on the radio. OK, technically I was in Beverly Hills, not L.A., and I didn't see any bum down on his knees —did I mention that I was in Beverly Hills?– but in all other respects, it felt like I was starring in the video for Newman's musical valentine to L.A., just 25 years after the fact.
Then my video fantasy took an ugly turn and began to play out like "Beverly Hills Cop." I glanced in my rear-view mirror and saw a Beverly Hills police car with all of its lights flashing.
The cop must need to maneuver around me, I thought, so I hastily turned right into a residential neighborhood. The police car turned right, too. Heart pounding, I pulled over to the curb and parked.
My tags were up to date; I wasn't texting on my cell phone; my seat belt was fastened; and I never speed. All I could think of was that the cops had finally caught up with me for blaring my horn on Melrose.
I reached for a note pad, and wrote "Can't talk" in shaky script. When the officer arrived at my window, I held up the pad.
Here's what got me on the foul side of the Beverly Hills Police Department: While my seat belt was fastened, lately I have been driving with the strap under my left armpit rather than over my shoulder. When the seat belt is over my shoulder, you see, it rubs against my trach, and I hate the sensation that causes.
The officer said he could see that my seat belt was fastened, but he said that it looked like it wasn't when he decided to pull me over. He also told me that wearing the shoulder strap below my arm was more dangerous than not wearing a seat belt at all.
Do you buy that? I don't. But I wasn't going to argue with him. I didn't have enough scrap paper in the car to explain how irritable a shoulder strap feels when it rubs against my breathing tube, and I wasn't about to communicate with him by Morse Code with my car horn.
Mr. Beverly Hills Cop let me go. I don't know if he couldn't justify writing a citation or if he just felt sorry for me, but he just told me to start using my seat belt the way that it was intended to be used.
If he had started writing out a ticket, I would have gotten out of my car and begged him to let me off the hook.
That would have completed the Randy Newmanness of my morning. That bum over there down on his knees would have been me.
Friday, July 10, 2009
Life is goof
As a guy in his 50s who is living with AIDS and cancer, you might think I'd be more circumspect about what I do with my time.
I mean, what if I'm in the caboose of my days? Other people in this position might spend their hours chanting or clutching their rosary beads to save their own skin, or burying their noses in medical journals in search of a cure for these diseases.
Can I help it if I like to goof off?
Don't think less of me because I admit this. Deep down, I bet you feel the same way.
Movies are great for goofing, and I'd rather watch them in theaters rather than at home. In a dark theater, I don't have to catch glimpses of all of my prescription bottles and cans of Isosource with my peripheral vision and I don't have to feel guilty about not scrubbing down the mildew in my bathroom every time I take a potty break.
First thing I do every Friday morning is flip through the pages of the L.A. Times Calendar section and plot which movies I want to see over the weekend.
You'd be horrified if you knew the dreck that I willfully pay good money to see on the first day of release, often bolting to the movies as soon as I get out of work.
July 10 has been circled on my calendar for months, because I'm very hot to see a movie that opens today.
Judging from the aggressive marketing campaign, this film may be the stupidest release of the year that Michael Bay did not direct.
I don't want to contribute to the marketing tsunami that has been building for this cinematic event by telling you its name, but I pray that this particular release is every bit as dumb as it looks.
Gordon Gekko said "greed is good." Paul Serchia says stupid is even better.
I'm not worried about throwing my money away on a first-run film that isn't even 90 minutes long. For weeks I've been carrying around a free movie pass in my wallet, and I intend to finally redeem it tonight.
In May, at my local Monstroplex, I snuck into one of the theaters where "Up" in 3D was playing after buying a ticket to see something else. They told me at the box office that "Up" was sold out but when I saw no one standing by the door checking tickets, I quickly snatched a pair of 3D glasses and scampered into the theater, where I fumbled in the dark until I managed to find an empty seat.
"Up" was a wonderful film. But the screen had a little smudge of dirt on it and I found it mildly distracting. So after the lengthy "Up" credits completed rolling, I put on my Angry Consumer mug and looked for someone to hear my complaint. Not being able to speak, I handed a note saying that the screen in Theater 13 was filthy to two kids at the customer service counter.
The kids stared at me, looked at each other, and then contacted someone on a walkie-talkie. And then they gave me a free pass. They probably felt lucky that I didn't club them over their heads with a walker with tennis balls for wheels.
Anyhow, by accepting that pass and cheating Hollywood out of 10 or 12 bucks, I probably gained momentum on my descent into hell.
It'll all even out. The summer is young and I have a lot of goofing to do. Chances are I'll catch the movie I'm seeing tonight more than once during its run in the theaters.
Especially if it's stüpid.
Wednesday, July 8, 2009
My lips are sealed
For six months and counting, no solid food or liquid has made it past my lips. But lately I've been stockpiling ChapStick at home, at the office and in my car, and I'm practically eating the stuff.
A few Sundays ago, after a morning at the beach, my lips started to chap and bleed. So I fished around in my drawer of forgotten beauty supplies —I have no idea where all of those bottles of gold nail lacquer came from— and discovered an old tube of ChapStick. After just a days of regular application, my lips improved.
I can probably lay off medicating my kisser with ChapStick, but I think I might have developed an addiction.
I use ChapStick when I drive, when I sit in the john and I wouldn't be surprised to discover I use it in my sleep. The other day at the office I spent most of my shift with my right hand on the computer mouse and my left hand digging blindly in my desk drawer for the tube of ChapStick.
I don't remember what riveting website I was looking at or what I was working on, but I didn't take my eyes of the monitor as I popped the lid to the tube and raised it to my lips.
The balm felt kinda gross and thick and it didn't smell at all like any flavor of ChapStick I've ever encountered. When I looked down at my hand, I realized that I was applying Glue Stick to my lips.
I hope no one at the office spotted me gluing my lips together. Rumors may start flying about what may be the real reason I'm unable to talk.
Monday, July 6, 2009
Not over yet
After an agonizing wait of 12 days –with only Sarah Palin's flameout and the Jacko shocker to distract me from my worries– my doctors at Kaiser finally delivered results from my PET scan.
The PET scan I had on June 25 was meant to determine if I have any cancer remaining in my body following the radiation and chemotherapy treatments that I had last winter and spring. I had hoped to hear the outcome from the procedure a few days later, but when I emailed my lead radiation oncology doctor about the results, he said that we'd go over them during my upcoming appointment.
That appointment was on Monday. And as much as I would like to announce that the PET scan showed that the barrage of treatments chased all of the cancer out of my body, I can't.
My doctor –actually, the first of several doctors who examined at me on Monday– showed a little reluctance in delivering the news. At first, he held up the PET scan and said that it was mostly good but that the test also showed "activity in my jawbone."
It was left to me to scribble a question in my note pad to clarify what he had just said.
"You mean, CANCER activity, right?"
He nodded.
He quickly added that the fact that there is no evidence of cancer in my neck, lungs or elsewhere in my head is a very good sign –cancer cells have not established colonies of Cancer Condos in my body– but that still leaves the stubborn cluster of cancer cells in my jaw to address.
Five doctors then took turns probing my mouth with their fingers, followed by lowering a fiberoptic camera in my left nostril and down my throat. Images produced by that procedure clearly showed the abnormal region near my epiglottis, which presented as an ominous white circle surrounded by pink and reddish tissue.
Monday's news wasn't all bad. The doctors said that my airway looks much improved, and that means –if my head-and-neck doctor concurs with that assessment– I may be able to shed my trach sometime.
But it's also clear that this cancer bout is going into overtime.
At the end of today's appointment in the radiation oncology department, one of my doctors said that "only time will tell" what the outcome of this mess will be. I sensed an apologetic tone in his voice; I think we both realized that he uttered those very words to me when I saw him a few months ago.
"I'm sorry I don't have better answers for you," he said.
I scribbled my response in my notepad. "I understand," I lied.
The fact is, I don't understand why there's not more clarity in what's going on in my body.
I just know I need to keep on fighting. To paraphrase John Paul Jones and Karen Carpenter, I've only just begun.
Saturday, July 4, 2009
Beating the odds
I pounced on the opportunity to enter the lottery to get a pair of tickets to the memorial for Michael Jackson on Tuesday at Staples Center.
Whether I attend the event depends on two things: one, that my name will be one of the 8,750 selected to receive tickets –as of Friday evening, more than 500,000 names had been registered– and two, that my employer's bereavement leave policy will let me skip work on Tuesday.
Anyone with an email address and a phone number has an equal shot at acquiring a pair of tickets as long as they enter before 6 p.m. Saturday. The Jackson camp should have required lottery entrants to field a quiz question or two to separate bona fide fans from those who think "Billie Jean" is a song about tennis and that Captain Eo is a character in Moby-Dick.
I think my fan credentials are sturdy but not solid. I rushed out to buy HIStory: Past, Present and Future, Book One on the day it was released in 1995, but I never summoned the courage to pick up Invincible, not even when I saw it marked down to $2.99.
So in the unlikely event that I am randomly selected to score a pair of tickets to Tuesday's memorial, I'll have mixed feelings about sitting in a seat that might have been occupied by a more loyal fan.
I'll make up for that by making sure that my second ticket is used by someone who adores Michael but doesn't have a ticket of his own.
Anyone know how to get in touch with Bubbles?
Thursday, July 2, 2009
Nobody likes a party pooper
This week has been more festive than most at my workplace.
On Tuesday, we threw a surprise party for somebody who is moving on after 29 years, and on Wednesday, there were two birthdays to celebrate in my department. A huge cake was served at the first gathering, and Tootsie Rolls and peanut butter cups were scattered around the room. For the birthdays, a smaller cake topped with strawberries was shared by about eight of my co-workers.
I could only lean against the wall at both parties and watch everyone else eat. Maybe I'll enjoy cake, Tootsie Rolls and peanut butter again –if I ever get rid of my G-tube and regain the ability to eat through my mouth– but all I can do for now is watch other people happily stuff their faces.
Today our HR department is hosting an ice-cream social to celebrate the holiday weekend. Everyone voted on the flavors to serve, and the winners were strawberry, cookies 'n' cream and chocolate.
But I'm not going to be a teetotaler for a third day in the row. I'm going to get in line with everyone else at today's ice cream social and when it's my turn to be served I'm going to take a scoop of each flavor and carefully wrap 'em in tin foil.
When I get home, I'm going to put the three wrapped scoops of ice cream in my freezer.
You can't blame a guy for wanting to have his cake -and ice cream- and eat it, too. What difference does it make if it sits in my fridge till I'm able to get it down my throat?
Wednesday, July 1, 2009
Ringing in the new year
Hey, did you have a happy Fiscal New Year's Eve last night?
Here's how the new fiscal year was greeted at the Serchia homestead: Three cans of Isosource at 7, jammies at 7:30 and curling up on the couch to watch a Woody Allen movie at 8 (if not for the credits, I would not have guessed I was watching a Woody Allen film. All of the men save one dated women their own age and the one who didn't got murdered).
I don't know what Dick Clark or Ryan Seacrest were up to last night, but if a fiscal new year's ball dropped anywhere in this time zone at midnight, I didn't stay awake to see it. (It was a chore to keep my eyes open till the credits rolled on Woody's movie.)
All things considered, however, my Fiscal New Year's Eve was far better than the real New Year's Eve six months ago.
Whoa, I was in miserable shape when 2009 began. My G-tube was less than a month old then, I wasn't talking and whatever was causing my problems was a complete mystery to me. I wasn't in much of a mood to shake a noisemaker or pour Champagne down my G-tube, and I still didn't feel like celebrating when the Chinese New Year arrived a few weeks later.
Things are a bit more stable today. My G-tube feels like a natural appendage, I'm learning how to get around the nuisance of speechlessness, and while I can't say that my cancer is in remission yet, I have a gut feeling that I'm moving in that direction.
So I'm going to go out on a limb and make a fiscal new year's resolution: I resolve to keep plugging away at fighting this disease.
I'm not going to resolve to beat cancer. I don't want to feel like I blew it if I'm still dealing with treatments and tubes and PET scans when the next fiscal new year rolls around. Besides, the fight is more important than victory.
Jeez, that sounds like something Vince Lombardi would have said. Well, you know what I mean.
Now, if you'll excuse me, I'm going to grab a noisemaker and go out and find a Fiscal New Year's Day parade.
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