Tuesday, June 30, 2009
My instructions last Thursday were to report to Kaiser Permanente's West Los Angeles Medical Center for my very first PET scan.
The goal of a PET scan is to detect metabolic activity caused by cancer cells, and I was pretty jittery about the procedure. After two months of radiation and chemotherapy and three months of recovery, I really don't want to hear that rogue cancer cells are still lurking in my body, and I wasn't wild about having a radioactive tracer shot into my veins so any cancer cells could be smoked out.
But there was only one way to find out if I still had cancer in me, and that was to show up on time and get the PET scan over with.
My appointment was at 4:30 in Kaiser's Nuclear Medicine Department in the West L.A. facility, which I had never visited before. According to the orders I received in the mail, the Nuclear Medicine Department was located on the first floor. That sounded simple enough to find – but nobody warned me that Kaiser's West Los Angeles Medical Center was the size of a small New England state.
I wasted precious minutes trying to find the entrance to the facility, and more time was lost as I navigated the multiple parking structures. By the time I parked my car and found the entrance to the hospital, it looked like I probably would be arriving late.
If I had a voice, I would have approached someone wearing a Kaiser badge and asked to be directed to the Nuclear Medicine Department, probably tripping over the word "nuclear," like Sarah Palin always does.
Instead, all I had to do to get directions to where I needed to be was walk up to the information desk, hold up my appointment reminder and point to words "Nuclear Medicine, Room 105."
As it turned out, Kaiser's Nuclear Medicine Department was just a holding tank for patients getting PET scans. After I checked in and completed a few forms, a short, stocky fellow entered the waiting area and announced that he would be leading me and another patient, a smartly dressed elderly woman with silver hair, to our PET exam.
We took a winding path through the hospital's corridors and outdoors before finally arriving at a bungalow in Kaiser's parking lot.
Kaiser's West Los Angeles Medical Center is located on a street called Cadillac Avenue, but this bungalow seemed to belong on Pinto Place or Chevy Vega Drive. To get inside the bungalow, we had to step on a platform and be raised to the entrance, where we were greeted an older man with a white jacket and a pony tail who vaguely resembled George Carlin.
The old lady was directed to one end of the bungalow and I was led to the other, where Dr. Carlin invited me to sit in a leathery recliner.
"How tall are you, Mr. Serchia?" he asked.
I held up five fingers, and then nine.
"Five-nine," Dr. Carlin said, writing in my chart. "Now, how much do you weigh?"
This was like playing charades, I thought. I held up one finger, then four, then I made a zero with my forefinger and thumb.
"One-forty?" he asked. I nodded.
Then Dr. Carlin gave me an overview of what the procedure would be like, explaining that the goal of the PET scan was to detect the "bad cells" in my body. He directed me to roll up my right sleeve and make a fist so he could insert a needle and inject the radioactive tracer in my veins.
I clenched my eyes tight while he rubbed my skin with alcohol and tapped my arm. I've been getting jabbed with needles on a regular basis for almost 20 years but I've never gotten used to it. It always feels like I'm being stuck for the very first time and I always think that I'm going to cry, but never do.
Except this time, I did. Just as the needle pricked my skin and slid into my vein, the whispering strains of Michael Jackson's "She's Out of My Life" began to play on the radio.
Dr. Carlin saw the moisture around my eyes and asked if everything was all right. I picked up a pen with my free hand and wrote in the margins of a newspaper: "This song always gets me weepy."
Because my writing hand wasn't available to me, I wrote with my left hand and my handwriting looked like Farsi. But Dr. Carlin figured out what I was trying to say.
The PET scan was a breeze. It was similar to other imaging studies except that it didn't make a deafening racket like an MRI and instead of having only my head and neck scanned, my whole body was inserted into the tight chamber.
About an hour later, the PET scan was over, and I was free to leave. Now, I'm waiting for a call from my doctor so I can hear the results.
I hope any lingering cancer cells don't take me for a wuss because I cry when I hear Michael Jackson songs on the radio. My message to them is: Beat it. Just beat it.
Sunday, June 28, 2009
After a long and brave battle against cancer, Mark Wine, the husband of my sister-in-law's sister, died on June 2 at the age of 56.
I didn't know Mark well. We saw each other just a few times each year –usually on holidays at my brother and sister-in-law's home– but I'm pretty quiet at family gatherings and I don't recall ever having a conversation with Mark that went beyond the usual family pleasantries. I knew Mark was a furniture salesman and I knew that he and his wife Barbara were deeply in love, but I didn't know much else about him. Mark also was somewhat quiet, and not someone who talked a lot about himself.
It wasn't until the last two months of Mark's life, when I visited Mark and Barbara's home, that I began to get a better sense of the man.
And on those two occasions, Mark wasn't even home; he was in the hospital. On the first visit, his wife led me on a tour of their home and I saw a space adjacent to the living room that looked like it might be Mark's favorite room. In it, Mark displayed surf boards, posters of the movie "Endless Summer," photographs of himself with his surfing buddies, trophies and much more.
The second visit was on the Sunday following Mark's passing. Amid all of the surfing paraphernalia in Mark's room was a hospital bed.
Today the Malibu Surfing Association hosted a memorial service for Mark at Surfrider Beach in the heart of Malibu. A huge number of his friends turned out to honor him, share memories and then paddle out into the ocean as a way of paying tribute.
Martin Sugarman, one of his Mark's friends, wrote an essay titled "To Remember Mark Wine," and copies were distributed to each participant in the service. In it, Martin writes:
"Mark was a dedicated surfer at heart. He loved the different moods of the ocean. The ocean triggered deep and wonderful feelings in him. In his feelings he recognized his inner self. He understood the ancient truth that one has to stay in tune with one's feelings to have a vital and undivided self. He learned to flow with the ocean's currents, rolling with its eternal waves. Mark was non-egotistical and at one with nature and its tides of life and death. Life emerged from the ocean millions of years ago, and sooner or later it will reclaim all of us."
I watched Mark's friends paddle out to sea on their boards and form a circle. Some time later, they broke away in small groups to ride back to the shore, and then they paddled out again. The waves were gentle and the water was warm.
I doubt that Mark had done much surfing over the past year, when his suffering from cancer was intense. But I definitely felt his presence at Surfrider Beach today. I bet everyone did.
Tuesday, June 23, 2009
Just popping by to say hey and to share some photos from my week of blog hooky.
I'm midway through what one of my friends waggishly dubbed "Wilco-chella": a four-show run of performances in L.A. by the band Wilco. Still photographs strip away 95 percent of the excitement of any rock concert but have a look at Wilco photos I posted on Flickr, and take a peek at a set of vastly superior shots by a friend of a friend.
Thanks to the Americans with Disabilities Act, the Wiltern staff gave me a comfortable seat behind velvet ropes to watch the show, and I plan to return to that perch for Tuesday's show. (For the final show of Wilco-chella, I have a reserved seat in the theater's loge.)
Wilco is scheduled to perform on Conan O'Brien on Wednesday evening, which means they will literally be lurking in my neighborhood. Catch the show if you can.
Me, I'll be hanging out at El Poquito Más waiting to see if Wilco stops by for a bite after Conan. I'm dying to know which kind of salsa Jeff Tweedy prefers on his tacos.
I'm guessing hot.
Monday, June 22, 2009
Your trusty blogger is playing hooky for a spell.
Wilco, one of my three favorite rock bands, is in town this week and I'm going to all four of their performances. The first show was on Saturday in Pomona, and the next three are at the Wiltern Theatre on Monday, Tuesday and Thursday.
Going to these shows, standing in line in order to get a good spot in front of the stage, keeping up my work schedule and sleeping will keep me out of the blogger's chair this week.
You might think that going to just one Wilco performance would be enough, but I'm bats for this band. Wilco has a wide catalog spanning nine albums and unlike a lot of touring bands, Wilco doesn't play a routine set each time they play. On this tour, not only are they spicing up their shows with songs that don't get played very often, they're also playing a brand-new batch of songs for the very first time.
So I'm putting this blog on the back burner so I can play fan boy.
But I have a PET scan scheduled for Thursday, so by the weekend, I'll be returning this blog to its upright position.
Then again, I just may decide to hide myself in one of Wilco's gear cases after their last performance at the Wiltern and follow them to Berkeley, Colorado and Virginia and then on to Dublin.
Friday, June 19, 2009
Whew! After six months of whining, kvetching and turning a blind eye to reality, I finally have gone through all five Kübler-Ross stages after losing my ability to eat through my mouth.
If you're thinking, "Dude, what do you want, a medal?" my response is, "Hell, yeah!"
In fact, gimme five medals: one each for Denial, Anger, Bargaining, Depression and Acceptance.
My Kübler-Ross phase of Denial was just before I went under prior to having a hole punched in my stomach to make way for my G-tube. The surgeons weren't going to install a tube in my tummy, I convinced myself; instead, they were going to surprise me with a nose job and when I wake up I'm gonna be so cute that the parents of the Jonas Brothers will want to adopt me.
I passed through the Anger stage during the weeks when I was threatening to flog anyone who approached me with my floppy tube.
Bargaining was when I had fooled myself into believing that recovery would handily arrive if I would only be a good boy and get through just one more case of Isosource formula. (That was 68 cases, 1,620 cans and 607,500 calories of Isosource ago.)
I ran into a nasty patch of Depression on the day that I played G-tube Roulette. I peeled the labels off containers of motor oil, WD-40 and a few cans of Isosource, arranged the cans in a row on my kitchen table, wrapped a blindfold around my eyes and selected one of the cans before dumping its contents down my tube.
Finally, having arrived at Acceptance, I am now at peace with the 12 inches of rubber that's tethered to my tummy.
To quote Harry Nilsson: People, let me tell you about my best friend (inanimated division): my trusty G-tube.
I twirl my G-tube around when I'm in a good mood. I mime karaoke tunes with my G-tube in the shower. On Election Day, I let my G-tube wear my "I Voted" sticker. I pop my G-tube's cap and bring it to my ear so I can eavesdrop on what's going on in my G.I. tract. I swing my G-tube like a lasso and use it to rope the remote control for my television. I put "Rubberband Man" on my stereo and dance with my G-tube in my living room.
Yes, my G-tube and I have a blast getting through this thing called life. And frankly, I get a little sad when I button up my shirt and go to work each morning because I know I won't be seeing my G-tube again until it's time for lunch.
In this "Who Wants to Be a Cancer Survivor?" game show I'm playing, my G-tube is my life line. Without it, I'd be a bag of bones by now.
Still, my relationship with my G-tube stops short of being a till-death-do-us-part pact. When the day when I regain the ability to eat through my mouth finally arrives, I'll be thrilled to have my doctors remove my tube and dump it in the nearest receptacle of medical waste.
But till then, my G-tube is my lucky rubbery charm.
Wednesday, June 17, 2009
In the early days of my cancer misadventure, my nurse in the recovery room at Kaiser tried to convince the rest of the hospital staff that her newest patient was not your humble blogger but madly rich Ben Stiller.
Almost six months later, I'm looping back to Ben.
My newly frozen jaw make me feel like I've been cast in a movie that turns Stiller's "Night at the Museum" movie franchise on its head. But instead of being a statue taking on human qualities, I feel like a human who is slowly turning into a statue.
My fingers are crossed that this symptom is just a sneak preview of rigor mortis, and that it will go away.
I can still move my neck fairly well. So what's the big deal if I'm losing the ability to move my mouth and jaw, since I can't chew or speak anyhow?
But if this symptom worsens, I may be headed straight to Pershing Square, where I could park myself beside the statue of Ludwig van Beethoven.
I bet Times columnist Steve Lopez still hangs out down in Pershing Square, hoping to stumble on story ideas, just as he discovered Nathaniel Anthony Ayers playing Beethoven ditties on a broken violin a few years back and turned the encounter into a series of columns, a book and a feature film starring Robert Downey Jr. and Jamie Foxx.
I'm not as interesting as a homeless cellist but I bet Lopez could find enough human interest in a formerly human statue to eke out a 700-word column or two. But if I continue down the path toward a deep freeze, I'll be pretty hard for the Times reporter to interview.
So I'm counting on next week's PET scan to capture some insight into what's causing this immobility and how to treat it.
Between now and next week's heavy PETing, I'm just going to have to perfect my poker face.
Tuesday, June 16, 2009
I spotted this bicycle locked to a street sign at the intersection of Fountain and La Brea in Hollywood while driving home from work a few weeks ago.
The bike is coated with white paint, and the sign attached to its frame reads "Alina Sheyman & Maria Velasquez lost their lives to a motorist 3/31/09."
You might assume that Ms. Sheyman and Velasquez were riding bicycles when they were struck. Reports on the incident that I found online, however, state that the two women, who were both in their 70s, were walking in the crosswalk with Ms. Sheyman's 45-year-old son when a northbound motorist turning left onto Fountain collided with another vehicle headed south. One of the two vehicles hit the three pedestrians, killing the two women and seriously injuring Ms. Sheyman's son.
No one was arrested or cited, pending an investigation.
The bicycle is seen by thousands of people daily driving through that busy intersection on the border of Hollywood and West Hollywood. I hope it makes the roads a little safer, for pedestrians, cyclists and motorists alike.
Monday, June 15, 2009
Why Lakers fans would celebrate winning a championship title by looting stores, torching police cars, and marching up a freeway onramp is a real head-scratcher to me.
I sure hope I keep my enthusiasm in check when my doctors give me the good news that my cancer is in remission. "Man Loots Comic Book Store, Tries to Lift MTA Bus Following Cancer Clearance": that's not going to play so well on Eyewitness News.
I fully expect to trounce cancer in this fight for my health, but I don't see myself lighting firecrackers on the sidewalk outside Kaiser Sunset in the immediate future.
Lately it has felt like cancer has the ball and I've been on the defense. Last week, I started to get scared about the spreading numbness in my face, lack of mobility of my mouth, and the increasing pain in my jaw.
Rather than wait for my next scheduled appointment with Dr. B1, my head and neck doctor, I emailed his office and described my symptoms, and told him that I wanted to see him sooner.
I got into his clinic on Friday morning before going to work.
I hear other people complain about feeling rushed during their doctor's visits, but Dr. B1 has always made me feel that he has as much time for me as I need. If anything, I'm the one who tries to rush through my appointments with him, by preparing detailed lists of all of my symptoms and writing out questions in advance of showing up in his clinic.
When Dr. B1 walked into the exam room on Friday, I thrust my legal pad into his hands and watched his expression as he read.
After reading what I had prepared, Dr. B1 felt my neck and face and asked me where I felt pain. He couldn't see much by looking into my mouth because I barely can open it, but he dropped the fiberoptic camera down my nostrils and got a look at my tongue and throat through the back door.
Dr. B1's theory is that radiation therapy damaged my mandibular and inferior alveolar nerves, and that is what is causing the numbness and the rigid jaw. This isn't unexpected; in order to rout out cancer cells, radiation can damage healthy cells. Some of these cells will repair themselves over time, but it's too soon to determine what will happen in my case.
In the book by Gilda Radner that I just finished, she writes about about having similar numbness in her legs following her treatments. My facial numbness is uncomfortable and often painful, but at least I still have mobility. It's also a good thing that I can get nutrients and my HIV medication into my body through my G-tube, because there's no way I would be able to get anything in my mouth in this condition.
Dr. B1 also pointed out that my most recent MRI showed decreased fat in my mandible (jawbone), and that is another consequence of being radiated in my face. At least that MRI shows that my jawbone is in alignment with my gender. I'd have a lot of questions for my docs if what showed up on my MRI was a womandible.
Dr. B1 said that he could order more imaging tests to get a closer look at my face, but with a PET scan just around the corner, it would be best to hang tight for those results.
I guess I was naive in believing that the worst of my symptoms were behind me after I concluded radiation and chemotherapy. Here I am, more than two months after my treatments concluded, and side effects are still wreaking havoc.
So it looks like my fight against cancer is going into overtime, gang, and then after that I may be looking at an extended playoff season.
I'll keep my firecrackers dry for as long as it takes.
Saturday, June 13, 2009
Just came home from a funeral. Boy, did I have a rip-snorting good time!
I know this sounds macabre, but I had such a blast that I went to this funeral twice today. And I went to the same funeral last night, and two or three times last week. I very well may return tomorrow.
The funeral I've been attending is for the Virgin Megastore. An international chain of record stores founded almost 40 years ago, Virgin announced earlier this year that it was shuttering all of its stores in the U.S.
I hate seeing record stores close. I miss driving down Sunset Boulevard and seeing the monstrous yellow and red Tower Records sign, and I miss all of the mom-and-pop record stores in L.A. that used to cater to music geeks like me. Only a handful of record shops scrape by these days, and an even smaller number thrive.
But I'm not sobbing too heavily as I watch the Virgin Megastore close to make way for a Hard Rock Café.
Virgin Megastores had confused DNA. Music was just one of the products they sold, and the prices were too high. There was something stimulating about walking into Virgin Megastores and wandering the supermarket-sized aisles but I never bought much there.
Until the funeral began, that is.
After the closing of the Virgin Megastore on Hollywood Boulevard was announced, they began a liquidation sale. Gentle discounts in the early weeks gradually gave way to bigger savings but when you did the math you realized that a CD marked at 50 percent off at the Virgin Megastore could be snapped up for less at Amoeba several blocks away.
Then this week, all of the merchandise was marked down 80 percent.
I shopped last night, and got a bag of CDs, DVDs and books for only $15. Then I popped by when the doors opened this morning and spent another forty bucks. This afternoon, I returned and spent even more.
I don't think I have wasted a dime at the Virgin funeral.
OK, the book of photos of people holding LP sleeves over their faces is not a distinguished addition to my library. But at 80 percent off, everything else was a deal.
I've been shopping far more wisely at Virgin's funeral than I did when Tower had its liquidation blowout, when I purchased two crates of the plastic bin dividers with artists' names on them. (My fantasy is that most of those dividers have Elvis Costello's or Elton John's fingerprints on them. Maybe even Jim Morrison's.)
After Sunday, the sale at the Virgin Megastore in Hollywood ends and there will be one fewer place to go to buy music. That really is a pity, you know.
So I just may pay one more call on the Virgin Megastore before the funeral finally ends, and this time bring along my camera. (I did exactly that on Sunday. Virgin's remaining inventory filled only about eight tables in a space about the size of an airplane hangar and had been marked down 90 percent.)
The day may come where people won't have anyplace to go to shop for music that comes in a sleeve and has a hole in the middle. When I'm in my dotage, it may help to have some photos to remind me that places like Virgin and Tower ever existed.
Friday, June 12, 2009
There's no Ann Landers to turn to anymore, so I'm writing to all of you today to help me solve a dilemma.
Reader, I need to figure out a new way of laughing.
It's not that cancer has caused me to go blind to things that I once found funny. "Get Fuzzy," MAD Magazine and Joe Biden all still strike me as hilarious and regularly trigger reactions on the humor spectrum that range from a robust titter to pee-in-my-pants convulsions.
But since cancer took up residence in my tongue I just can't bust out and laugh like I used to.
And it's gotten worse in recent days. My newly rigid jaw won't let me guffaw.
This week, while the rest of the world has been watching the Lakers, I've been catching up on DVDs. One night I watched a Sarah Silverman movie; the next I watched some old episodes of "Mary Hartman, Mary Hartman" and on Thursday I watched Woody Allen's "Stardust Memories."
All of these shows were as funny as ever. Pre-cancer Paul would have laughed non-stop and have had to press rewind to catch all of the lines that my laughter drowned out.
But because my mouth doesn't open very wide I was virtually mute.
When my tongue and jaw recover from this malady, all of the laughter I've been suppressing all these months will rise up and produce a Vesuvius-size eruption.
Man, will that feel good. But in the meantime, I need to figure out a way to get some release.
Tomorrow I have a ticket to see comedienne Paula Poundstone at a club in Agoura Hills.
To me, Paula Poundstone is just about the funniest human being in history and when I see her live I like to get as close to the stage as possible.
Paula is known for picking out people in the audience to engage in conversation. It's a core element in her shtick. If I don't bust out laughing during Paula's performance she is bound to notice and bait me from the stage.
You can imagine how frustrated she would get when she realizes that I can't respond to her. It could not only capsize her act but the audience might turn against me. Paula Poundstone fans are very protective of their idol.
Here's another horrifying scenario: The numbness in the lower part of my face means sometimes I drool out of the corners of my mouth without even realizing it. If Paula catches a glimpse of me doing this, she very well could believe that I've had a stroke and stop her performance to call for an ambulance to get me to a hospital.
So I need to train myself to channel laughter into some other physical manifestation.
Should I flap my arms like a chicken? Slap my knees with the palms of my hands? Jab the ribs of the people sitting on either side of me with my elbows?
Or should I just bring a legal pad into the club on Saturday night and after each one of Paula's jokes scribble a score and hold it up for her to see, like a judge at a comedy Olympics?
Maybe I'll luck out tomorrow, and Paula will really suck.
But sooner or later, a guy's gotta laugh. One way or another, I just gotta get these laughs out of my system.
Thursday, June 11, 2009
Two-thirds into Gilda Radner's autobiography, the message that I'm hearing loud and clear is that cancer is an equal opportunity destroyer.
Gilda Radner was one of the original Not Ready for Prime Time Players who made "Saturday Night Live" so much fun to watch in its first five years. With characters like Rosanne Rosannadanna, Emily Litella and Baba Wawa, Gilda won the hearts of millions of viewers, including me.
After Gilda left the show in 1980, Saturday Night Live lost a lot of its goofy charm, and at least this viewer decided it wasn't worth staying up late on Saturdays anymore.
In 1986, Gilda learned that she had ovarian cancer, and less than three years later, she died.
If I had read "It's Always Something" before I got my cancer diagnosis in January, instead of months later, I would have been far better prepared to roll with the punches this disease has dealt. I don't have much in common with Gilda Radner's life, but her experiences with cancer more than 20 years ago eeriely foreshadow some of my own.
Other experiences Gilda writes about in the book suggest ways that I might cope with this disease. The Wellness Community, a cancer support network that Gilda discovered when she was undergoing chemotherapy, looks like something worth checking out.
I'm not in any hurry to finish "It's Always Something." But I've peeked ahead to the last pages and see that Gilda wanted the jacket of her book to read "Her triumph over cancer" or "She wins the cancer war."
"I wanted a perfect ending, so I sat down to write the book with the ending in place before there even was an ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle and end. Like my life, this book has some ambiguity. Like my life, this book is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next."
Gilda was 42 when she died from ovarian cancer. Although her story didn't turn out with her "winning the cancer war," as she had hoped, she's helping people like me write happy endings to our stories. And that gives me one more reason to love her.
Wednesday, June 10, 2009
Cancer keeps throwing new surprises my way, and the latest one is a doozy.
I've lost feeling in the lower part of my face. A while ago, I noticed that a small region along my left jaw was starting to go numb and I mentioned it in a visit with Dr. B1. He didn't seem alarmed, so I didn't freak out about it, either.
Now the numbness is spreading to the other side of my face. To make things worse, the inside of my mouth feels puffy. And it's feels like I would need a crowbar to open my mouth.
These symptoms have delayed the physical therapy I had hoped to be doing. Last week, my TheraBite –a jaw motion rehabilitation device– arrived but I'm afraid to pop it in my mouth to start building strength in my jaw.
I got in touch with Dr. B1, and he agreed to move up my next appointment with him. I'll be seeing him on Friday.
In the meantime, I may as well have some fun with this situation.
As long as this numbness holds up, I'm betting that I could sustain a good pop on the jaw without feeling a thing.
So maybe I'll retire my goody-goody-two-shoes persona and take on the characteristics of, well, a douchebag.
I could pull up a stool in bars and hit on other guy's dates, like Captain Kirk does in the new Star Trek movie. I could find an Orlando Magic jersey and blue-and-white pom pons and hang outside Staples Center when the NBA Finals return. I could dress up like Rocky Balboa and allow myself to get rabbit-punched by tourists at Hollywood and Highland.
There's pugilism in my family tree, so maybe I could even start professional prizefighting. If nothing else, I bet I would have a pretty good chance on landing on the cover of the AARP magazine.
I probably won't let Dr. B1 in on my plans. If he knew that I was going around town picking fights with strangers, he might not be as invested in getting me past this cancer thing.
So keep it under your hat, will ya? And I'll let you clean my clock.
Tuesday, June 9, 2009
People keep telling me that they can't imagine what it's like to not have a voice.
Eh, it's not so bad.
Some days I pretend I'm the star of a modern-day Aesop's Fable. The twist is that instead of being an animal gifted with the power of speech I'm a human stripped of the ability to talk. Some day, while walking in the woods, I'll encounter a snake or a chicken or a fox speaking with my old voice, and after the lil' critter delivers the moral of the fable, I'll get my voice back.
Other days, I imagine that I'm living out an episode of the Twilight Zone in which an evil dummy turns the tables on a ventriloquist by capturing his voice. I'm just waiting for Rod Serling to pop up and put this whole ordeal into perspective.
Whatever coping mechanism I may choose to use on any given day, I try to not let speechlessness get in the way of communication.
Between notepads, text messages and blogging, I get by. You'll never see Strother Martin take a look at me, shake his head and say "What we got here is a failure to communicate."
Besides, isn't the lesson of the Susan Boyle saga that voices are overrated? Didn't the U.K. singing sensation just lose first place in the "Britain's Got Talent" competition to a group of speechless dancers?
Last Wednesday, I really outdid myself in circumventing my communication limitations.
In the middle of the workday, one of my buddies on AIDS/LifeCycle 8, the 561-mile bike ride from San Francisco to Los Angeles, sent a text message to my phone.
At that point, my buddy was somewhere between Paso Robles, the campsite for the third day of the ride, and Santa Maria, the site of campsite for Day 4. "Need your help in booking a hotel 4 Sat near the closing ceremonies at the VA," he wrote.
Immediately, the chorus of voices in my head began to protest. "How are you going to call around town to find a hotel room with no voice?" the voices said. "Every hotel room in a 10-mile radius is bound to be booked!" And: "That's crazy!"
I punched the Reply key and start to type a message explaining I couldn't possibly pull off a stunt like that without having a voice.
Before hitting Send, however, I set down the phone and hopped online.
First I went to Mapquest to look at the streets surrounding the site of the closing ceremonies. Then I typed a ZIP code and the word "hotel" in Google. That produced a list of hotels in West Los Angeles. I got the name of a few and went to one of those internet travel booking services.
In a matter of minutes, I found a hotel room less than one mile from the VA and booked it under my buddy's name. Then I sent him the address and the confirmation number by text.
Three days later, I gave my buddy a lift from the closing ceremonies to the hotel and walked with him to the desk. He had just ridden a bicycle more than 500 miles and hadn't slept on a mattress indoors in seven days.
I set down my buddy's sleeping bag on the floor and laid the printout of the confirmation on the counter.
The desk clerk studied it for a moment and handed it back. "Sir," he said, "this confirmation is for yesterday."
I banged my head on the counter so hard that it got a Richter reading.
Luckily, the hotel still had a room available for the night, so my buddy got to sleep on a bed and soak his tired muscles in a bathtub.
But something tells me I wouldn't have made this mistake if I had booked the room over the phone while talking with someone who knew what he was doing, rather than by using Priceline.
So if you should happen to run into Aesop or Rod Serling, tell them I'm ready to get my old voice back. I'm tired of giving the world the silent treatment.
Sunday, June 7, 2009
For months, the headline on my AIDS/LifeCycle page has said "Won't Let Cancer Keep Me Out of the Saddle" of this year's ride.
Well, gang, it did.
But I'm not beating up on myself about it.
This weekend, I realized that whether I ride in AIDS/LifeCycle or participate in the event as a volunteer roadie is not the point, and never was. I'm still a citizen of the broader AIDS/LifeCycle community and that counts for a lot.
I spent Saturday afternoon at the Veterans Administration grounds in West L.A., watching riders complete the last mile of their seven-day ride from San Francisco to L.A., and then viewing the closing ceremonies for the event, which drew thousands of spectators.
As one of those spectators, I got a perspective on the event that I don't get to see as a rider, and that is how beautiful each and every cyclist looks as he or she spins toward the finish line.
All last week I had been following the progress of the ride on the AIDS/LifeCycle website, where thousands of photos and several blogs were documenting the ride as it wound its way south toward L.A. Experiencing ALC online was almost like actually being there, but seeing the riders and the roadies in person was thrilling.
A few of my friends in Positive Pedalers invited me to join them in the closing ceremonies as a flag bearer, but I wrote them a note explaining I wanted to watch. They smuggled me into the staging area where I was allowed to watch a rehearsal of the ceremony and then stand with VIPs beneath a canopy to the left of the stage.
I dumped my backpack and jacket on a seat in the second row of the VIP section and then flitted about with my camera and pom-pon, snapping photos of riders and roadies, many of whom I hadn't seen since last June. When the actual ceremony got under way I cleared the seat and offered it to a VIP, explaining that I was going to stand, but as it turned out all of the VIP seats went unused. Everyone was standing, because the real VIPs at the V.A. on Saturday were the ones with the bicycles and helmets and roadie hats.
When Lorri Jean, the CEO of the L.A. Gay & Lesbian Center gave a shout-out to the Positive Pedalers, I waved my orange Pos Ped flag. It was the first time in six months that my Pos Ped flag had felt sunlight, and man, did that feel good.
There was at least two fewer riders arriving in Los Angeles than who began the ride seven days earlier in San Francisco. On Mile 13 on the first day of the ride, a cyclist who is the brother of a friend of mine in Pos Peds suffered a serious accident, and remains unconscious in the hospital in San Francisco, surrounded by family members. His progress is being reported on his ALC home page blog by his brother, who left the ride to be with him.
And there are hundreds of cyclists in AIDS/LifeCycle or its predecessor, California AIDS Ride, who were absent from ALC 8 because they have died from HIV/AIDS. A riderless bicycle represented them in the closing ceremonies, just as it did in the opening ceremonies in San Francisco. In the photo at left, I'm standing with Mr. Goodman, who escorted the riderless bike to the stage on Saturday, joined by his wife.
Meeting the Goodmans was an incredible moment for me. Their late son, Jeffrey, is the namesake of the Jeffrey Goodman Special Care Clinic at the L.A. Gay & Lesbian Center. Becoming a patient of the Goodman Clinic in 2005 after losing my health insurance was the catalyst for my involvement in AIDS/LifeCycle in the first place.
So cancer kept me out of the saddle in AIDS/LifeCycle 8, but it didn't keep me out of the ALC community.
Not even 10 cancers can keep me out of ALC.
Photos of Positive Pedalers at ALC 8 Closing Ceremonies
Saturday, June 6, 2009
Angry protesters demonstrated in Hollywood on Friday against Governor Schwarzenegger's proposed cuts in HIV/AIDS programs in California. After a rally across from the Hollywood Forever Cemetery, we marched through the streets of Hollywood to raise awareness of the governor's dangerous proposal. More photos
Friday, June 5, 2009
Thursday, June 4, 2009
As the lights in a theater at the Arclight went down last night, my buddy told me that I would not possibly find anything in the movie we were about to see remotely upsetting.
"I promise," he said, flashing the Scout's honor gesture.
Two weeks ago, he and I saw a movie about a World War I soldier named Joe who ends up in a hospital bed with no arms, no legs, no face –just a torso and a brain– and the only thing keeping Joe alive was a trach that looked suspiciously like mine.
Last weekend, on my own, I saw a horror movie in which the lead ghoul wears a set of gamy dentures that she uses projectiles and at other times removes them to gum her victims with slime –just like I could if I were possessed by Satan and wanted to drag people to hell.
It was assuring to hear my buddy certify "The Muppet Movie" as safe fare for a guy like me with a tracheotomy and a G-tube and four months of tongue cancer under his belt. And because the movie originally was released in 1979, I knew that none of the Muppets were going to die of AIDS, either.
In minutes, we were watching Kermit the Frog squatting on a log in a swamp, plucking a banjo and warbling "The Rainbow Connection" and I was under the Muppets' spell. All of my real-life woes had been tucked away and forgotten.
Then the song ends, and Dom Deluise, playing a talent agent named Bernie, floats by. As Bernie tempts Kermit with a star-making role in Hollywood, a fly buzzes by and Kermit snaps at it with his tongue, but misses.
"First thing to go on a frog, his tongue," Kermit sighs.
I didn't bolt from the theater. I didn't even kick my buddy in the shins, though I was tempted.
I just reminded myself that recovery for my tongue may be just downstream in this cancer swamp I'm in; I just can't see it yet because it's hidden in the kudzu.
Like Kermit says: "Life's like a movie, you write your own ending."
In the ending to my movie, no fly that buzzes near me has a chance of surviving.
Wednesday, June 3, 2009
There are campsites in six cities along the 561-mile route of AIDS/LifeCycle and I have a mnemonic device to help me remember them:
"Santa Claus Knows Comet, Prancer and Rudolph Secretly Mock Lazy Vixen."
Repeating that sentence in my head as I rode in ALC helped me make sure I rolled into the right campsite on the proper day (the cities are Santa Cruz, King City, Paso Robles, Santa Maria, Lompoc and Ventura).
On Tuesday, the 2,200 cyclists and 500 roadies of AIDS/LifeCycle 8 stayed in campsite 3: the Mid-State Fairgrounds in Paso Robles. Day 3 is one of my favorite days on the ride because that's the day when Positive Pedalers are featured in the evening program in the dining hall at camp.
An award is presented to one Pos Ped, and another Pos Ped delivers a speech about what it means to be living with HIV/AIDS and participating in an event like ALC. At the end of the speech, the speaker asks everyone who is living with HIV/AIDS to stand up and be acknowledged.
The guys and gal of the Pos Ped Board gave me the honor of asking people in the dining hall to stand, even though I knew that I wouldn't be in Paso Robles on Tuesday. Here's what I sent to them:
"This ride is all about helping people with HIV/AIDS and raising awareness about the disease. That is no small task: In California alone, there are more than 184,000 people living with HIV/AIDS.
"I had hoped to ride in ALC 8, for the fourth consecutive year. Unexpectedly, I had to place my health ahead of my desire to ride.
"But I know that many of my brothers and sisters with HIV/AIDS are on this ride, and that gives me great strength.
"At this time, I'd like to ask everyone in this room who is living with HIV/AIDS to rise. Riders and roadies, if you are living with HIV/AIDS, please stand up and be recognized."
Wish I could have been there to deliver those words in person. Of course, I wouldn't have been able to speak myself, but I would have figured out some way of communicating.
Instead, Tuesday night found me curled up on my couch continuing my private Jake Gyllenhaal Film Festival (last night's feature: "Donnie Darko") when a text message arrived from my buddy Nathan, one of the two co-chairs of the Pos Ped Board.
"The Day 3 speech went well, with an amazing amount of people standing," Nathan wrote. He went on to say that he has ridden every mile in ALC 8 with another Pos Ped friend of mine, Beau.
That was great news. In November 2007 Nathan had a serious accident while cycling and he wasn't able to ride in ALC 7. The fact that Nathan is back in the saddle gives me hope that I'll be in good enough shape to ride sometime soon, too.
In just a few days, the riders and roadies will arrive in Los Angeles. I can't wait to see them. And you're invited, too.
Tuesday, June 2, 2009
Who knows what the sales associate at Planet Beauty thought when I staggered into her store on Monday and stepped up to her counter?
My expression was one of desperation. If I had stepped into Planet Beauty to get prettified, this young lady, whose badge read Jackie, would not know where to begin.
Jackie probably had had a long day matching her female customers with moisturizers, foundations and spray-on sun tans. She may not have been up to waiting on a man with no voice and a swollen tongue who looked like he was wearing one of the wigs that Phil Spector left behind before he went into the pokey.
I slapped a piece of paper on the counter and wrote, "Please show me all of your tweezers."
Jackie disappeared to check her stock, and I contemplated what had brought me to Planet Beauty.
A tiny battery was jammed inside my left hearing aid –again.
A few months ago, I had a mishap when the battery carriage broke on my right hearing aid, leaving the battery stuck inside, and I worsened the situation by stepping on the plastic that holds the battery inside the aid. Since then my hearing has been at half-strength, at best.
With the other aid now useless, too, I had the congeniality of a two-by-four.
But I had a shot at fixing the aid and getting half of my hearing back if only I could find the right pair of tweezers to remove the battery.
A pair of tweezers I had at the office didn't do the trick, so I decided to try again with a second set of tweezers I had at home. For more than an hour, I had been trying to capture the battery with the tweezers when I decided that maybe I just needed a more precise set of tweezers.
Jackie returned to her station with two fists full of tweezers and spread them on the counter.
The points on the $6 pair she showed me were too thick. Then she showed me a $22 pair, which looked fine enough to get the job done, but did I really want to spend $22 plus tax just to pry a battery out of my hearing aid? Do people actually lay out that kind of dough to pluck eyebrows and nose hairs?
Jackie handed me a third pair, and I studied it closely. These tweezers not only looked like they would be up for the task; they were marked at $14.
I gave Jackie a thumbs up and handed over my debit card.
As she rang up my purchase, I opened the package and tried in vain to clasp the tweezers on the battery and lift it out of the aid.
"Here, let me try," Jackie said, taking the tweezers and the hearing aid out of my hands.
She leaned into the challenge with the precision and confidence of dentist working on an abscessed tooth. Sweat beads formed on my brow, but Jackie's was dry.
After a few minutes, she successfully clasped the tweezers around its prey and expertly lifted it out of the hearing aid.
I whooped and hollered as loudly as my speechlessness permits. I gave Jackie a thumb's up and all but genuflected in appreciation before waving goodbye and leaving Planet Beauty.
I wonder if Jackie does cancer tumors, too?
Monday, June 1, 2009
My body is planted in L.A. today, but my heart is somewhere between Santa Cruz and King City with the heroic riders and roadies of AIDS/LifeCycle 8.
Spend some time with my friends Stefan and Gabo –a first-time ALC roadie and a longtime ALC cyclist– as they blog from the road. In today's post, they recap the opening ceremonies and first day of the ride, which took place on Sunday.
Sure wish I were with them now instead of beginning a day at the office.
Gabo and Stefan and the rest of AIDS/LifeCycle will arrive in L.A. on Saturday afternoon.