Thursday, April 30, 2009
My friend J.R. sent an email to me on Wednesday with the subject line "Congrats!"
J.R. is my Cycle Buddy in the AIDS/LifeCycle office. Even though J.R. has several hundred other ALC riders and scores of roadies to keep tabs on, he has been staying in touch with me throughout my Annus Horribilis (and no, that term is not dirty. I learned it from Queen Elizabeth.)
"I wanted to be sure to send you a congratulations on reaching your minimum," J.R. wrote. "That definitely guarantees your spot on this year’s AIDS/LifeCycle."
J.R. was referring to the $3,000 sum that all registered AIDS/LifeCycle riders agree to raise for the L.A. Gay & Lesbian Center or the San Francisco AIDS Foundation in order to participate in ALC 8: next month's 561-mile ride from San Francisco to L.A. I'm raising money for the HIV services of the L.A. Gay & Lesbian Center and last week, the sum given by donors to my ALC fund hit $3,000.
"As soon as you raise money for AIDS/LifeCycle, it goes to work for the people that need it most," J.R. wrote. "On behalf of AIDS/LifeCycle, the L.A. Gay and Lesbian Center, and our clients, thank you."
My fund-raising for ALC 8 isn't over. The goal I established last summer was to raise five grand for the Center. As of this morning I have $1,219 to go, and 30 days to get there.
When I got sick last fall, I told myself that I'll make a decision about whether I'll ride in ALC 8 when the ride got closer but fulfill my promise to the L.A. Gay & Lesbian Center regardless of that decision.
In November, it seemed like I had plenty of time to figure out what was going on with me, get it treated, and then resume my training for the ride. Now, ALC 8 is only 32 days away.
My bike is still standing in the same spot in my living room where I parked it last November, the last day I rode it. I swear I'm going to keep my options open about riding but even if a miracle occurred and my tongue snapped back to normal, I'd still have to whip myself into shape so I could handle pedaling up to 107 miles a day for seven consecutive days.
I like looking at the bright side of things. But I probably have a better chance of being part of the Endeavor's crew when the space shuttle is launched in June. I'd be the astronaut drinking Tang through a G-tube.
I would still be thrilled if you visited my AIDS/LifeCycle page and checked it out. You can see a list of the donors who have pitched in to help the L.A. Gay & Lesbian Center –they're the ones that J.R. should really thank instead of me– and you can make a donation yourself.
Nothing would make me happier than shutting down this blog for the first week of June so I could ride my bike from San Francisco to L.A.
Well, make that almost nothing would make me happier. What would make me happiest is seeing my ALC hit $5,000 and knowing that the Center is putting that sum to work to help people in Los Angeles with HIV/AIDS.
Wednesday, April 29, 2009
It's a beautiful spring day and I'm feeling light in my loafers. So forgive me if I don't get around to mentioning the C-word in today's post.
- In the window of a juice shop down the block from my office hangs a sign that reads "Sorry! We're OPEN."
- PR Week announced this week that it is shifting from being published weekly to monthly, but the publication is keeping the name PR Week. That tells you everything that you need to know about the public relations business.
- If GQ magazine started publishing every month, would its name change to GM?
- I really wished that I had a voice on Sunday when I heard L.A. Times columnist Steve Lopez speak as part of a panel discussion at L.A. Times Festival of Books. Lopez tried to make the case for value of his newspaper, saying that each edition was well worth the 50 cents it costs. I wanted to shout, "It costs 75 cents, Steve!" (The panel's moderator corrected Lopez, after he repeated his error.)
- Someone being interviewed on the radio the other day described something as a "double-edged sword." Aren't all swords double-edged? One dull, one sharp.
- After five months of eating only through a G-tube, I've started to eat through my mouth in my dreams. A few nights ago I dreamed I ate an entire three-tiered wedding cake. And it was at a reception that I hadn't even been invited to.
- That reminds me: I haven't opened my refrigerator since at least Christmas. I should have unplugged the thing in observance of Earth Day.
- Does it really make a difference if Phil Spector decides to become a Democrat?
- Bob Dylan released his second album in only six months on Tuesday. It feels like 1965 all over again.
- My Annual Passport to Disneyland expired in February, and the House of Mouse has been desperately trying to woo me back. I feel directly responsible for the recent layoffs at Disneyland.
- If I were Robert Iger, these are the Disneyland cast members that I would lay off: Jasmine, Ariel, Max (Goofy, Jr.), Lilo, Stitch, Mrs. Incredible, Pocahontas and Timon.
- A friend who follows this blog complained on Tuesday that the L.A. Times used "Betwixt, between" in a headline twice in just a few days. Well, the Times says right on Page 1 that its pages are partially recycled.
- What is a "betwixt," anyhow? Isn't it something that's for kids –not silly wabbits?
- Back to the juice shop I mentioned at the top of this post: I wonder if the other side of that sign says "Welcome! We're CLOSED"? (Update: I was close. I checked it out today and it says "Come In! We're CLOSED.")
- Do they still write sit com theme songs as cool as the one that began each episode of "Maude"?
Lady Godiva was a freedom rider
She didn't care if the whole world looked.
Joan of Arc with the Lord to guide her
She was a sister who really cooked.
Isadora was the first bra burner
And you're glad she showed up (Oh yeah!)
And when the country was falling apart
Betsy Ross got it all sewed up.
And then there's Maude!
And then there's Maude!
And then there's Maude!
And then there's Maude!
And then there's Maude!
And then there's Maude!
And then there's . . . that old compromisin', enterprisin', anything but tranquilizing,
right on Maude!
- Bea Arthur and Bob Dylan could have cut a killer album together.
Tuesday, April 28, 2009
Jeez Louise! Has it really been only 100 days?!
So much has happened in such a short period of time. It's been action-packed, wouldn't you say? If there has been even one dull moment, I certainly can't put my finger on it.
No, I'm not talking about the first 100 days of the Obama presidency. I'm talking about the first 100 days since I got my cancer diagnosis, which by comparison make Obama's hundred look downright placid.
Technically, I arrived at the 100-day marker last Saturday but it wasn't until today that I counted backward and realized that I had overlooked the milestone.
It's been quite an adventure.
No, I haven't traveled to Europe, western Asia, Mexico City and all over the United States over the past 100 days, and no, I haven't made lame cracks to Jay Leno on the Tonight Show or paced up and down the South Lawn with a pooper-scooper. I haven't danced on any ballroom floors, shot hoops in Kuwait or landed on the cover of MAD.
But I have covered a lot of ground in 100 days of being a guy with cancer.
I've completed a full course of radiation and chemotherapy and endured a battery of side effects that I thought would never clear up. My tongue has swelled to the size of a Macy's Thanksgiving Day Parade balloon, contracted almost to its normal state and now fluctuates in size from day to day and hour to hour. Not a single calorie has passed my lips, but I have managed to eat heartily by pouring almost 900 cans of Isosource down my G-tube over the past 100 days.
I haven't seen my cancer cured.
But I think that would be a lot to ask for in just 100 days.
I'll be hitting the double-century mark in this cancer odyssey sometime in early August. Till then, I hope to keep pushing toward my goals: to talk, to eat through my mouth and most of all, to leave cancer behind in the dust.
Rush Limbaugh isn't taunting me or telling his listeners that he hopes that I fail. But that doesn't mean that it's going to be easy.
Advances elusive in the drive to cure cancer, a report in The New York Times by Gina Kolata
Letters from Times readers on the above article
Sunday, April 26, 2009
- Maude Findlay: [Answering the phone] Hello? No, this is not Mr. Findlay. This is Mrs. Findlay. Mr. Findlay has a mustache.
- Maude: Francie, this is Florida. My dear, dear friend, probably the best friend I have in the whole world.
Florida Evans: I'm the maid.
- Maude: How can I have a party for a black guest of honor and not have one single black guest?
Carol Findlay: Maybe you should've invited two black couples, Maude.
Walter Findlay: That's right, Maude, you should always have a back-up black.
Maude: [Skyward] Please, if you really do exist, get him soon.
- During Florida's interview for the maid job
Florida: Now, the first week'll be on a trial basis.
Maude: Oh, Florida, don't be ridiculous, you're not on trial.
Florida: I know - you are.
- Dr. Arthur Harmon: No offense, Maudie, but I wouldn't touch you with a ten-foot pole.
Maude: No offense, Arthur, but that's the only way you'd EVER touch me.
- Arthur: [Looking at Maude's black eye] If the "Our Gang" comedies ever come back, you could be the dog.
Maude: And if Mister Ed ever comes back, there'd be a part for you. I'm not talking about the part that talks.
- Walter: Maude, did you wreck the car again?
Maude: Did you hear that, everybody? DID YOU HEAR THAT? Not "Maude, are you sick?" Or "Maude, are you unhappy?" Or even, "Maude, are you pregnant?" No, "Maude, did you wreck the car again?"
Walter: You're right, darling. You're absolutely right. I'm sorry. So tell me, are you sick?
Walter: Are you unhappy?
Walter: Are you pregnant?
- Maude: [to Carol] To think I bought you your first training bra. Look how you've broken training.
Bea Arthur, who starred in "Maude" and "The Golden Girls" on television, died of cancer at the age of 86 on Saturday. May she rest in peace.
Friday, April 24, 2009
Welcome, Reader. You've arrived at this blog just as another episode of "The Perils of Paul" is about to begin.
Just when I thought that my streak of bad luck was winding down, I stumbled into a fresh pile of doodoo.
I was sitting at my desk at the office on Thursday when I saw a co-worker heading my way. Figuring she had something to say to me, I reached for my hearing aids and plugged them into my ears.
The right hearing aid began to sputter, meaning that it was time to replace the battery. So I removed it from my ear and tried to open the battery carriage but instead of opening on its hinge, the carriage –a crescent-shaped piece of plastic about the size of a nail clipping– broke off.
I scoped my desktop to see if it landed there but I couldn't see it.
Maybe it fell in my lap, I thought, but I didn't see it there, either.
I dropped down to my hands and knees to hunt for the piece on the floor, gently moving the palm of one hand along the tips of the carpet fibers. No luck.
Then I stood up and took one baby step toward my desk, and that's when I heard the sound of crunching plastic.
I lifted my right foot, and there was the battery carriage –what was left of it, that is.
Now in addition to having lost the ability to speak, my hearing ability has been reduced by half.
I know it's my own fault. Just call me Paul the (Artificial) Organ Grinder. And I suppose you could say that the price I am paying for this is the deaf penalty.
Just can't shake the feeling that somewhere out there is a witch casting spells on me by removing pieces from a Mr. Potato Head. The mouth was the first to go, and now one of the ears.
I'll start looking into getting the aid repaired or replaced today.
Meanwhile, if you leave a comment on my blog, use ALL CAPS.
Thursday, April 23, 2009
A few weeks ago, I stumbled upon a pile of coupons that entitle the bearer to a $2 discount off any used item at Amoeba Music.
I didn't see any sign saying "Please Take One," so I scooped up as many of the coupons as I could stuff in my backpack.
Later I read the fine print of the coupons and learned that they are "Void After 4/31/09."
April 31 is a date that will never arrive. As long as the Gregorian calendar remains in effect, those coupons are like a wad of $2 bills direct from the U.S. Mint.
So lately I've been spending more time at Amoeba than many of its employees.
I popped by Amoeba again on Wednesday night. Sure enough, within minutes of entering the store I found a used CD I simply had to own: "Skeletal Lamping," by the band Of Montreal.
I walked up to the counter and handed the CD, a coupon and a $10 bill to the clerk, a young guy with curly hair and a bright smile.
At this point in the Amoeba shopping experience, the clerk often validates the customer's selection by saying "Cool choice" or something similar. (That doesn't happen when you buy a Liza Minnelli album, however.) This time, the clerk handling my purchase stared at my neck and asked "How long have you have the trach, man?"
I felt my neck and realized that I left my scarf behind in the car, leaving my trach tube and collar visible.
I made a gesture to the clerk that indicated I needed to write down my response. He unspooled some blank paper from the register and handed it to me.
About three months, I wrote.
"How come?" the clerk asked.
Cancer, I wrote. Can't talk or eat through my mouth.
The guy's eyes widened. "Wow!" he said. "That sucks."
"Is your cancer caused by smoking?" the clerk inquired.
I shook my head. No, I wrote. I never smoked. Just luck of the draw, I guess.
He looked at me silently for a few seconds, then said "I hope you get better."
Me, too! I wrote.
He then rang up my purchase and handed me my change. "I'll meet you at the end of the counter," he said.
He and I both walked to the spot where Amoeba clerks hand over purchases to customers.
"Good luck to you, buddy," he said, before giving me a salute to send me on my way.
I looked at my receipt and saw that the clerk's name was Trevor.
Chances are that Trevor forgot about his interaction with the guy with no voice and a hole in his neck as soon as the next customer stepped up to his station, but maybe not. Maybe he smokes and will take another look at that warning label on his pack of cigarettes the next time he lights up. Or maybe he never came face-to-face with someone with cancer before, and our exchange will stay with him a while.
I'm sure it won't be long before I see him again. I have about 40 $2 bills in Amoeba funny money to spend, and the way I see it, I'll be expiring long before the coupons do.
Wednesday, April 22, 2009
In the make-believe world in my head, I bit my nails all morning on Monday and waited for the Pulitzer committee to announce their prize winners for 2008.
In the far less glamorous real world, on Monday afternoon I sat in an exam room biting my nails and waiting for the doctor to tell me if he knew whether my cancer treatments succeeded.
OK, make that gumming my nails. I forgot that I have no teeth.
Monday's visit to Kaiser's Radiation Oncology Department was my third follow-up appointment since radiation and chemotherapy treatments concluded last month. But it was my first visit with Dr. Chen since he and the rest of the Cancer Board examined me in January and approved my course of cancer treatments.
The visit began on a clumsy note, before Dr. Chen even arrived. One of Dr. Chen's assistants pulled up a chair beside me and read from a chart on her clipboard.
She said that her chart showed that my treatments ended in November. No, I scribbled in my legal pad; my treatments ended March 25.
Then she said that her chart said that I had my trach surgery after my treatments were over. No, I wrote, I got the trach on January 14, before I even was aware that I had cancer.
A perplexed expression rose to the doctor's face. She flipped over her clipboard and held it up to my face.
"Is this you?" she asked, pointing to the name on her chart.
NO, I wrote. I lifted my I.D. badge from the office off my neck, and let her read my name.
She studied my badge, then looked at her chart, and looked again at my badge.
"Oh, I am so sorry!" she said, before rushing to the door and leaving me alone in the exam room.
Some time later, the door creaked open and she stepped inside again. "Good news, Mr. Serchia!" she announced. "We found your real chart!"
For a moment I wondered if my "real" chart might had gone missing in January and everything that has happened to me since should have happened to another Kaiser patient.
Then Dr. Chen's assistant snapped on her latex gloves and got down to the nitty gritty. First she stuck a tongue depressor in my mouth, and then her fingers went in.
Dr. Chen walked into the exam room just as I was beginning to drool. I hope Dr. Chen didn't think that I was drooling at him, but maybe word has gotten around the Kaiser campus that I cast all my doctors in an imaginary daytime soap opera that plays in my head.
Within seconds, Dr. Chen's fingers were in my mouth, too. It must be a rare treat for a doctor to examine a toothless patient's mouth and not need to fear being bitten or eaten.
In comparison to his assistant's slender digits, Dr. Chen's fingers felt like tree limbs in my mouth.
Then Dr. Chen said, "Let's go to the exam room next door." I knew what that meant.
The exam room next door was where the heavy artillery in the Radiation and Oncology Department is kept. Dr. Chen wanted to perform a nasopharyngoscopy.
A nasopharyngoscopy is a procedure where the doctor inserts a flexible fiberoptic scope up your nostril and keeps pushing it into your nasal cavity until you feel it bumping against the lining of your esophagus. While the nasopharyngoscopy is under way, a monitor displays video of your innards in live, gruesome color. And after the doctor is finished probing your innards, he slowly pulls the scope out of your nostril.
Dr. Chen's exams on Monday showed that it's too soon to draw conclusions about my cancer, but I am definitely still a big baby when it comes to have fiberoptic cameras shoved into my nose.
The swelling of my tongue has gone down, but it has a ways to go yet, and there are no guarantees that will happen. Dr. Chen ordered another MRI to get a closer look at what's going on, and wants me back for another follow-up in a month.
I drove back to the office not knowing if my cancer was caught by my treatments, and I still have no clear idea about when I'll be able to talk again and eat through my mouth.
When I sat at my computer, I went directly to the Pulitzer website to read the list of winners for 2009, which had been announced while I was seeing the doctor.
In the Pulitzer Prize ceremony in my head, I took top honors in three categories, was finalist in two others, and my editors and fellow journos celebrated with me by pouring Champagne down my G-tube and sticking cigars in my trach tube.
Back in the real world, I still have cancer and a tongue that swells. Well, there's always next month to look forward to.
Monday, April 20, 2009
Thinking Positive is a blog about cancer and AIDS, but AIDS has gotten short shrift here.
I'm coming up on 100 days since my cancer diagnosis and I don't know when I'll get the upper hand on this disease. On the other hand, I've been living almost 18 years with AIDS, and my viral load is undetectable.
I haven't seen my HIV doctor at Kaiser face-to-face since last November, but he tells me that he's been keeping an eye on my medical charts and watching my blood labs. And he helped me shift from taking my HIV meds in pill formulations to liquids that I pour down my G-tube. I've been picking up my HIV meds at the Kaiser pharmacy once each month.
I'm lucky to have access to HIV care through my health insurance, but that isn't the case with every person with HIV.
Here in Los Angeles, people with HIV can access free HIV services at the L.A. Gay & Lesbian Center. In 2005, when I was unable to keep up my health insurance premiums, I turned to the Center for assistance and was a patient there for nearly two years.
I will never forget what the Center did for me, and that's the reason I registered for AIDS/LifeCycle in 2005.
AIDS/LifeCycle is a 545-mile bicycle ride from San Francisco to Los Angeles that raises funds for the L.A. Gay & Lesbian Center and the San Francisco AIDS Foundation. I rode and raised funds for the Center in 2006, 2007 and 2008, and I am registered to ride in AIDS/LifeCycle 8 in six weeks.
With each day that passes, it looks less likely that I'll be ready to ride in ALC 8. But that doesn't mean that I should abandon my promise to raise funds for the L.A. Gay & Lesbian Center, especially at a time when the Center is at risk of losing funds for HIV services from government sources.
Please support the L.A. Gay & Lesbian Center by going to my AIDS/LifeCycle page and making a donation. Any amount is welcome, and you can pledge to donate in monthly installments.
Last night, I got great news from a friend who runs a convenience store in Orange County. He keeps a jar on his counter for customers to donate their change to a good cause. My friend finished counting the coins that he has collected over the past year, and he'll be making a gift to the L.A. Gay & Lesbian Center in that amount through my AIDS/LifeCycle fund, just as he has for the past two years. He says that this year's donation will exceed $1,000.
On behalf of the patients and staff of the L.A. Gay & Lesbian Center, I ask you to consider making a donation to AIDS/LifeCycle. Thank you for reading this.
Saturday, April 18, 2009
I led too many people astray on Friday by abandoning my blog in mid-sentence.
The impression I was trying to make was that I spontaneously bolted from my apartment to head to the Coachella music festival, taking place this weekend in Indio.
Naw, I went to work instead. And I apologize to any of my friends at Coachella who may be looking for me in the crowd, and to any readers of this blog who may have thought that I dropped dead before completing Friday's entry.
I decided to stay in L.A. this weekend to celebrate National Record Store Day. Already today, I've hit two record shops in Hollywood and the Silver Lake area to score limited edition releases and take advantage of bargain prices, and I'm on my way to the westside and the Valley to check out a few more shops.
I still think I belong at Coachella. But since I'm not, I'm having a ball keeping Record Store Day hole-y. And there are plenty of holes to choose from on Record Store Day: the wide hole of a 45, the tiny hole of an LP, or the pinky-size hole of a CD.
Come Monday, Record Store Day will be over, Coachella will be history and I'll be headed to Kaiser for another follow-up on my cancer treatments.
Friday, April 17, 2009
Don't know why I didn't get tickets to the 10th Annual Coachella Valley Arts and Music Festival, which starts today in Indio.
Terrific lineup this year: about 50 bands each day! Some of my friends are going all three days. I'll probably be at my desk at work when the first text messages start rolling in.
Sigh. I really should be at Coachella today.
Indio's not that far of a drive.
I can still grab tickets on line, and text my boss while I'm on the road.
After all, there's a time for work, and there's a time for ROCK. Right? Sometimes you just gotta be spontane
Thursday, April 16, 2009
A guy with a hole drilled into his neck just can never have too many scarves.
I've written about scarves before. Never fond of scarves before my tracheotomy surgery three months ago, I now wear them whenever I think that my trach may call unnecessary attention to myself.
Sometimes I think that successfully wearing a scarf is no easier for me than learning to walk on stiletto heels would be.
Scarves have a knack for unraveling and even taking flight in the wind. I've gotten scarves caught in my zipper and tangled on my steering wheel. I've ruined one delicate scarf in the laundry –can't explain what I was thinking there– and I own a few scarves that are so beautiful I'm afraid to wear them out in public.
(Since I originally posted this entry this morning, a friend e-mailed this warning to me: "Please remember that Isadora Duncan was strangled when she was riding on the back of her boyfriend’s motorcycle and her scarf got tangled in the wheel." My God, is this true?! If cancer or AIDS don't kill me, one of my scarves just might do me in instead.)
Over the past three months, I have managed to build up quite a collection of scarves, thanks to generous family members and friends.
On Wednesday, my scarf collection expanded yet again.
Last month I participated in the Susan G. Komen Race for the Cure at the Rose Bowl in Pasadena. The Los Angeles County Affiliate of the Susan G. Komen Foundation has raised more than $7 million to fund breast cancer programs and research over the past 12 years, and I was proud to participate in the event with several co-workers.
When I opened my mailbox yesterday, I found an envelope from the Komen Foundation. In appreciation for the fund-raising I did for the Race for the Cure, the Komen Foundation sent a souvenir magnet and a cool lightweight scarf.
The pattern on the scarf is a touch girly. But it's not like that it will clash with my butch Teamster-like demeanor.
I thought about taking a self-portrait of myself wearing the scarf to post on my blog but I think I need a few more months of recovery under my belt before I start tossing photos of myself on the internet.
Big brother Mike, Laurie G. and Lisa O.: Thank you for the donations you made to the Race for the Cure. I earned this scarf because of you.
By the way, the 14th Annual Komen Los Angeles County Race for the Cure will take place on Sunday, March 14, 2010. Registration opens this fall. Visit the Komen Foundation website for information.
Wednesday, April 15, 2009
You know, some of you people don't know how good you have it.
Yes, I'm talking to you. You, Mr. or Ms. Multi-tasker, clenching a double-double animal style in your left hand and your iPhone in the right, scrolling through this blog and superior ones as you tool around town from one destination to the other.
I'm filled to the gills with envy.
It's been months since I've been able to eat while driving.
Eating, for me, now requires both hands –one to hold the nose of the plastic syringe and my G-tube steady, and the other to tip the can of Isosource– and at least one eyeball, to make sure that I'm not inadvertently pouring Isosource someplace other than into my belly.
Life would be so much easier if I could eat and drive like every other Californian.
A friend asked me to meet him in Hollywood on Tuesday night for a chance to attend a free screening. There wasn't enough time for me to go home after work, so after paying a call on the freshly dedicated star for George Harrison on the Hollywood Walk of Fame, I decided to find a quiet place to park, have a quick meal in my car and then meet my buddy standing in line.
If you haven't been in Hollywood recently, you may not know that it is next to impossible to park on the street for free after 6 p.m. After years of watching WeHo reap a fortune in after-hours parking revenue and fines, parking meter hours of enforcement throughout much of Hollywood have been extended to 8 p.m., and you're limited to one or two hours only, at the rate of $2 per hour.
I didn't have four bucks of change on me, so my plan was to find a space marked as a loading zone, and park there for free. Don't let this get around –for God's sake, don't tip off Mayor Villaraigosa– but in L.A., you can park in a yellow loading zone after 6 p.m. Monday through Saturday, and all day on Sundays, and not have to pay a cent.
Luckily, I spotted a loading zone space open up on Selma Avenue, just off the Cahuenga corridor: a block away from where I was going to meet my friend. The only problem was I had a good 15 minutes before I could park there legally.
Hipsters were crawling up and down Selma hunting for parking, so there was no way that I was going to pass up that choice space. I decided I would just stay in the car and use the 15 minutes to feed myself two servings of Isosource, while keeping an eye peeled for signs of trouble.
If any parking enforcement goons popped up to ask me what I was doing in a loading zone, I would point to the "Loading Only" sign and explain that I was loading dinner into my belly. Or I would drive away, trying my best to keep my syringe and G-tube steady.
Well, I didn't get any heat from any parking enforcement officers and no one pounded on my hood and shouted "Get a ROOM!!" but I got plenty of stares from riff-raff on the sidewalk peering into my car. And a double-decker tour bus loaded with tourists squeezed past, inches from my elbow.
The gurgle of the Isosource made it hard to make out what the tour guide was saying. My guess is that he was probably trying to divert his passengers' attention away from the junkie in the Toyota Tercel with the rubber tube sticking out of his stomach speed balling his evening fix of Isosource.
It took just 20 minutes to get two cans of juice in my belly. I capped my G-tube, stuffed it back beneath my shirt, and buttoned up.
My friend and I waited more than a hour and half in line, but we didn't get tapped to step past the velvet rope and join the hipoisie into the screening.
Someone must have snapped a photo of me with my G-tube in my car, and sent it to the Hollywood Chamber of Commerce as an undesirable. I may be blackballed for life.
Tuesday, April 14, 2009
George Harrison is getting a star on the Hollywood Walk of Fame today.
I can't make it to the dedication ceremony at 11:30 this morning, but I want to pay my respects to the former Beatle. I'll stop by this evening on the way home from work.
George's star is near the Capitol Records building at 1750 Vine Street, not far from John Lennon's star.
In 1997, George learned that he had throat cancer. Four years later, a growth was removed from one of his lungs and he was later treated for a brain tumor. In November 2001, he died here in Los Angeles, with his death attributed to "metastatic non-small cell lung cancer."
George was only 58 years old.
Lennon-McCartney songs dominated on Beatles albums, but each Beatles album from "Help!" onward featured George's songwriting, too, at the rate of about one tune per LP side.
Toward the end, you could make the case that George's songs like "While My Guitar Gently Weeps" and "Here Comes the Sun" were the highlights of the band's LPs. Even Frank Sinatra said that George's "Something" was one of the greatest love songs ever written, and George didn't mind that Ol' Blue Eyes often credited the composition to Lennon-McCartney when he performed it himself.
Following the Beatles' split in 1970, George unleashed his creativity and burst out with a triple-disc album that may be the best release by any of the former Beatles.
If not for cancer, there would be more Harrisongs in the world. But we can celebrate the songs that we have, and the man who wrote them.
Come visit George's star sometime.
And if you're struggling to complete your income tax return by tomorrow's filing deadline, drop the needle on the opening cut of the Beatles' Revolver album. "Taxman" is one of George's songs, too.
Monday, April 13, 2009
Waiting to see if my tongue is going to snap back to normal is a little like keeping an eye on the stock market to see if it is going to recover.
Like the market, my tongue has gone through some rough times over the past several months. Even after my radiation and chemotherapy concluded late last month, my tongue continued swelling.
When the swelling resumed, I wanted to cry. But the swelling only lasted a day. It went back down, and for the most part, my tongue has been on good behavior since.
The changes I see aren't only in my head. My doctor noticed the improvement when I saw him last week; my best friend sees it; and family members visiting L.A. for the holiday see a big difference.
The rear part of my tongue is coming along far more slowly. But even there I think things are changing for the better.
It's not only my tongue that's improving. At the beginning of last week, I was blowing my nose so often that I was going through an entire box of Kleenex each day. On Saturday and Sunday, I didn't need to blow my nose once.
I'm still not talking, of course, and I'm not even going to try to get food in my mouth until I'm certain that I'll be able to swallow it.
But things are moving in the right direction. The pain, discomfort and sleepless nights of the recent past are only memories now.
I know I'm taking a risk every time I go public with good news. What goes down could easily swell up again.
Cancer could mock me. For the moment, however, it seems to be in retreat.
Friday, April 10, 2009
Once I make it home from the office at night, swap my work clothes for pajama bottoms and a T-shirt, and plop down to pour a hearty meal of Isosource down my G-tube, it's next to impossible to get me out of the apartment.
By day, I try to act like little has changed in my life since my cancer diagnosis. By night, I'm still in jammies-and-slippers mode.
Thursday night I hunkered down for another night of voluntary house arrest. Sitting at my computer while I poured myself dinner, I dropped in on my favorite place to hang out on the web, Kevin Roderick's blog at LA Observed.
Roderick, who writes about L.A. and journalism, is frantic these days staying on top of all of the changes at the L.A. Times' headquarters on Spring Street. On Thursday, however, his attention was diverted elsewhere.
The top story on Roderick's blog was headlined "Error O' the Week," and it was aimed at L.A.'s other struggling daily, the Daily News.
Like most papers, the Daily News on Wednesday reported on the big news that broke in the Beatles world this week. On Tuesday, Apple Corps and EMI Music announced that all of the Beatles' studio albums will be remastered and re-issued on Sept. 9. But in telling its readers about the Beatles remasters, the Daily News published a photo of a Beatles tribute band rather than the Fab Four themselves!
"It's not too often you see the Beatles misidentified," Roderick wrote in his blog, "but the skeleton shop that is the Daily News managed the feat on the front page of yesterday's paper."
For Beatles fans –and who doesn't love the Beatles?– it was a boo-boo akin to, say, splashing an above-the-fold photo of Barack and Michele look-alikes on the day after Inauguration Day.
The tribute band that the Daily News confused with the Beatles doesn't even look like the real John, Paul, George and Ringo. One of the members looks more like Jimmy Osmond.
No, he looks more like Bonnie Franklin. If anyone ever starts a tribute band to "One Day at a Time," this guy's a cinch as its drummer.
Clearly, somebody wants to start holding the Daily News' proofreader's hand. But there is enough blame to spread around: a paper's front page gets looked at by a lot of people before the presses roll.
Din-din can wait, I said to myself. I just had to get my paws on a copy of the Daily News with the Beatles boner.
I hastily poured the Isosource in the syringe back in the can, shoved my G-tube beneath my pajamas and bolted out the door.
My quest began at the 7-11 a few blocks away from my apartment. No luck there; they had only Thursday's edition of the Daily News. And I walked out empty-handed at another 7-11 down the road.
No worries, I thought. The newsstand in my neighborhood surely would have copies. I pulled over, scribbled a note that asked "Wednesday's Daily News?" and handed it to the news agent. "Sorry, buddy," he said.
I hopped back behind the wheel. There was another newsstand just a mile north, but as I drove I remembered that it went out of business. Then I struck out at a nearby liquor store, and then I failed to find a copy at a third 7-11.
I was feeling decidedly un-fab. Night was falling, I was dressed like I was on my way to John and Yoko's bed-in, and it seemed that all of the copies of the Daily News' historic gaffe had already been snapped up. They could already be up for auction on eBay at Beatles' butcher's photo prices, I moaned.
I decided to give myself one more chance before heading home. Sure enough, at my very next stop –a neighborhood grocery– I rummaged through a stack of random papers and found Wednesday's edition of the Daily News.
I plunked two quarters down on the counter, gave the clerk a thumb's up, and headed home.
In print, the error was even more shocking than it looked on the web. It's sad to see mistakes like this creep into print, or online. (Earlier this week, after President Obama visited Iraq by surprise, the Los Angeles Times' website reported that he paid a call on Iran.)
After finishing my Isosource meal, I sat down to write today's blog.
Not that my little blog will add further embarrassment to the Daily News, but guys in pajamas who publish blogs better be careful when pointing out flaws in others.
You just never know when Instant Karma's gonna get you.
Thursday, April 9, 2009
Not being able to talk is one of the biggest drags about this cancer ordeal of mine.
I keep a pen and a pad of paper handy wherever I go. But I don’t have the neatest penmanship and I’m not the fastest writer. Sometimes people get impatient with me and walk away before I have a chance to complete a sentence.
Maybe my problem is that I’m simply long-winded. Or maybe my crutch is my reliance on communicating in English.
I mean, this is the digital age, right? There's a wide world of emoticons out there just waiting to be incorporated into my vocabulary!
Before I got sick, emoticons annoyed the hell out of me. I'm thinking now that these lil' boogars might be able to help me stay connected with the outside world while my tongue heals.
Here's a starter set:
Sigh. Tongue mildly swollen today
Ugh! Tongue grossly swollen today
Time to toss another yummy meal down the G-tube
Say, have you seen where I left my drool cup?
That's a swell idea!
That's a crummy idea!
Looking forward to having enough energy to spend a day at Disneyland soon
Please pardon the goop leaking out of my trach
Please pardon the goop dripping out of my nose, too
OK, so posting a whole blog about emoticons wasn’t such a hot idea after all
Wednesday, April 8, 2009
Both Dr. B1 and Dr. B2 have had a look at me in recent days.
These were the first exams I've had since my radiation and chemotherapy treatments wrapped up last month. As much as I would love to have the two Dr. Bs declare me cancer-free, neither is in a rush to do so.
Still, each doctor did have good news for me.
Dr. B2, my oncologist, told me that my worrisome blood counts have improved from 10 days earlier. That third and final chemo session, however, still is not happening.
Dr. B1, my head and neck surgeon, says he sees improvement in my tongue but I have to wait longer before we know if I'll be eating through my mouth and talking again.
As for me, I'm impatient for recovery. But I also know that only three months ago a cancer diagnosis was the furthest thing from my mind. I've come a long way.
A friend who has been with me every step of this ordeal joined me for Tuesday's visit with Dr. B1. Besides telling the nurse that my swollen face used to resemble the Julius the monkey logos on her Paul Frank scrubs, my friend asked the doctor some tough questions I hadn't thought to ask myself, or before I had a chance to write them out in my legal pad.
Dr. B1 held his line and stopped short of making predictions about what would happen to me.
We have to wait and see, Dr. B1 said.
I didn't walk out of the exam room empty-handed. During Tuesday's visit, Dr. B1 replaced my trach tube and collar.
Each time I get a new trach collar I feel like running around in circles and then dash off to the nearest dog park to show it off. After sleeping and showering with the same trach collar for several weeks in a row, I start to feel a little gross.
It wasn't till I was in the elevator on my way out of the building that I realized that the new apparatus was much different than the one I had when I arrived for my appointment.
The trach tube itself was longer. It felt like a shish kebob spear sticking out of my neck. If I rolled over in my sleep, my head would look like a hairy golf ball on a tee.
And I couldn't figure out how to open and close the tube's cannula, which I need to do several times a day to keep it clear of secretions. You just never know when a drill inspector might pop up and demand to check the cleanliness of your trach tube.
So I parted with my friend in the lobby and rode the elevator back up to the head and neck department.
Dr. B1 explained that my old trach tube was a "low profile" model and the new one was "high profile."
Oh, the trouble I could get myself into if I had the ability to speak without having a chance to calibrate my reactions.
I wanted to tell Dr. B that the attraction of a "high-profile" trach tube was lost on me. Wasn't it bad enough that my trach catapults secretions and sounds like a backfiring Harley-Davidson every time I cough? I don't need to look like I have a kazoo permanently lodged in my throat, and call even more attention to the hole in my neck.
Dr. B1 must have read my mind. After rummaging through a shelf of medical supplies, he found a tube that matched what I'm accustomed to wearing, and swapped it with the shish kebob spear.
Maybe the trach tube I'm wearing now will be the one I have when I hear that my cancer is in remission.
Tuesday, April 7, 2009
The outcome of my cancer fight may still be up in the air, but there is one thing that I can say with certainty:
I have more friends now than when I began this struggle two and half months ago.
In January, I wrote about stumbling upon a manuscript called "A Short Life," written by a man named Jim Slotnick who died of brain cancer in 1983 (see Short life, long legacy). Jim was a medical student at UCLA and volunteered at the clinic where I work.
I devoured "A Short Life" in a day or two a few weeks after I got my cancer diagnosis, and I learned more from it about this disease than just about anything else I've read.
I returned my copy of "A Short Life" to the bookshelf where I found it. Miraculously, my friend Shirley tracked down one of only a few leather-bound editions of Jim's manuscript in existence –a copy that had been presented to Jim's late mother– at a bookshop in New Mexico. Shirley had the book sent it to me for my birthday.
Since then, one of Jim's friends –a woman who Jim wrote about in the pages of his book– has contacted me and we've struck up a email friendship ourselves. I've also received an email from Jim's younger sister and his brother, both who have left comments on this blog.
These three people were in Jim's life as he was fighting for his life more than 25 years ago, and now they're offering me encouragement and support. When I pick up "A Short Life" these days, I feel an even stronger connection with the writer.
And then there is the guy who manages my apartment building.
Because of my work schedule, I don't see Dave around the building very often, but we were both in the laundry room recently and he tried to strike up a conversation. I wanted to explain to Dave why I wasn't responding to him, so I handed him a note explaining what's going on with me.
When I came home from work the next day, I found a cartoon that Dave had drawn for me slipped beneath my door. It shows a chipmunk-like character wearing a baseball cap and a T-shirt with a big smiley-face.
Next to the chipmunk, Dave wrote: "A big smile to brighten your day and for your recovery I sincerely pray! Hope your treatments go well!"
Another new friend dropped me a line late last week.
She is the stepmother of a friend I met through my work. This friend took time several weeks ago to collect a hefty package of cancer literature from Cedars-Sinai Medical Center: an invaluable array of pamphlets, newsletters, booklets and other handouts on living with cancer.
My friend's 89-year-old stepmother was treated for cancer six-and-a-half years ago. Now, happily, her cancer is in remission.
Both stepmother and stepdaughter took the time last week to send me good wishes. Included in the envelope was a copy of a funny card that the stepmother received when she was undergoing chemotherapy and radiation. She kept the card all of these years, and she wanted to share it with me.
"Hang in there," she wrote to me. "Life is a gift!"
Friends are gifts, too. I'm lucky to have so many helping me get through this.
Monday, April 6, 2009
Ever since cancer showed up in my life last winter, I've been trying to read as much about the disease that I can.
So a headline in the Los Angeles Times caught my eye last week. Above an article in the left-hand column of the front page of the Business section were these words: "A cancer in the financial system."
I read deep enough into the article by Michael Hiltzik's article to determine that the piece had nothing to do with cancer. Instead, the headline was derived from a quote in the story about credit rating companies, which were described by a San Diego University professor as a "cancer that's spread throughout our law, our banking regulations, our securities regulations, our insurance regulations."
Up until a few months ago, I wouldn't have given the cancer references a second thought.
But now that I have cancer, I felt a bit peeved. I wanted to shout, "Hey, Professor! Hands off my disease!"
What is it about the word cancer that drives people come up with these loopy locutions?
I don't know much about credit-rating agencies, or the role that they play in the current financial meltdown. But I do know this: Credit-rating agencies do not cause cancer.
Probably the most famous public figure to borrow the term "cancer" to drive home a point was John Dean, the White House counsel who told the President Nixon on March 21, 1973 that the Watergate cover-up is "a cancer upon the presidency" and warned that it must be excised.
Does any other disease get this kind of treatment?
Is there anybody out there saying that the U.N. Security Council has lockjaw? That Congress has scurvy? That the International Monetary Fund has male-pattern baldness? That Alaska's Mt. Redoubt has a gastrointestinal disorder?
Of course not. But toss out the word "cancer" to make a point about problems in our economic system, and nobody blinks an eye.
As much as I would like to see the C word used solely to describe the medical condition we know as cancer, I don't have much hope that will happen.
Turns out that the guy who originally gave cancer its name started us down this slippery slope, more than 24 centuries ago.
I'm talking about Hippocrates himself. Practicing medicine in Greece in the fourth century B.C, Hippocrates didn't come up with a brand-new word to describe cancer. He borrowed the words "carcinos" and "carcinoma," which are Latin words that refer to crab.
You'd think that the ancient Greek chapter of PETA would have pounced all over Hippocrates for giving crabs a bad name. If anyone at all protested, I'm not aware of it. So the so-called Father of Medicine got to have his way.
You gotta feel sorry for the hapless crustaceans of the world. When another medical malady came along and needed to be given a name, crabs got picked on a second time.
Any tradition begun by Hippocrates may be too powerful of a force to resist. I guess I can complain all I want about people abusing the word cancer, but I doubt that it's going to have much of a difference.
Besides, I have enough on my plate as it is, without taking on a crusade against John Dean and everyone else who ever gave cancer a bad name.
But I still think that Dr. Hippocrates owes Sebastian the crab an apology.
Friday, April 3, 2009
Boy, that G-20 summit sure didn't last long, did it?
Well, if you weren't quite prepared to see the world-leader gathering in London end so abruptly, you've come to just the right place.
Today, I am presenting my first –and hopefully last– G-tube summit.
Yup, here are 20 Random Declarations about the G-tube: the 12-inch rubbery hose into which I pour three square meals of liquid Isosource each day.
- Officially, the "G" in "G-tube" stands for "gastric" or "gastronomy" but you can make the G stand for whatever you want.
- Having a G-tube meal by candlelight may make the feeding experience more romantic, but it also carries the risk of melting the tube and searing the lining of your stomach.
- Having a G-tube is a great excuse to not do sit-ups.
- Having a G-tube is a great excuse to not do exercise of any kind.
- The "G" in "G-tube" could stand for "groovy" just as well as "grisly."
- A chiseled abdomen with a G-tube is a sexier look than you might think.
- There is no relationship between G-tubes and G-spots.
- Gas allows you to do some pretty spiffy tricks with a G-tube.
- All TSA agents are trained to see a passenger's G-tube as a threat to national security.
- Looping a G-tube around a tree limb and swinging upside-down is a great way to relax.
- A search of the term "G-tube" on YouTube produces alarming results.
- The part of the G-tube that rests against the abdomen is known as a "Mickey," but so far Disney lawyers have not sought a claim that using that name is a violation of their copyright.
- A G-tube can be an effective launching pad for fireworks.
- Some exotic dancers incorporate their G-tube into their performances, and dress it up with glitter to match their G-string.
- A G-tube that becomes uncapped in bed produces a spill equivalent in volume to the oil released by the Exxon Valdez.
- Singing into a G-tube valve is common on karaoke nights in nursing homes.
- There is nothing unpatriotic about placing your G-tube over your heart during performances of "The Star-Spangled Banner."
- Square-dancers are known to tug on G-tubes to make their partner spin.
- Spies who have G-tubes are known to grind up classified information and feed it into their tube.
- Composing a list of 20 observations about a G-tube is not as easy as you might think.
Thursday, April 2, 2009
Turns out that Arnold Schwarzenegger and the state Legislature weren't pulling an April Fool's prank on the state of California.
The state sales tax really did rise by another 1% percent on Wednesday. In Los Angeles County, we're now paying 9.25% sales tax: one of the highest rates in the nation.
I'd like to offer a heartfelt apology for any role that I may have played in forcing the governor and legislators to resort to an across-the-board tax hike to help replenish the state's coffers.
After I went into the hospital in January for a biopsy and tracheotomy surgery and learned that I have cancer, I went on a brief medical leave from my job. During that time, the state Employment Development Department mailed a check to me to make up for my lost wages.
I was back at my desk in early February. Aside from taking several days of vacation during the last week of my radiation and chemotherapy treatments, I've been continuing to work ever since my return.
On Monday I got a letter from EDD telling me that they may have overpaid disability benefits to me. If what the EDD is telling me is correct, most of the payment I received in January was paid to me in error!
I'm now drowning in paperwork that the EDD wants me to complete to determine my financial situation for the past six months.
And as I dutifully respond to each of the department's demands, this notion occurs to me: Maybe the real reason we're all paying an additional 1 percent sales tax now is to cover up sloppy bookkeeping –and not on my part.
I mean, how do mistakes like this happen?
So I'm thinking that our state's leaders were a little too eager to try to close the state budget's shortfall with a tax increase. And I'm proposing a few better ways to restore California's financial solvency.
- Variable tax rates
We all know Californian love to gamble, right?
So instead of applying a uniform sales tax rate on all products and services, why not give residents a chance to pay a different percentage?
Put a spinning wheel like the one that you see on "The Wheel of Fortune" next to every cash register in the state. Every time a purchase is made, the buyer would spin the wheel to determine the sales tax.
Maybe the wheel would stop at 9.25%. Maybe it would stop at 0%. And maybe it would stop at 1,000%.
- Sell advertising on state highways
A while back, a friend told me about a barren stretch of desert highway in Lancaster, Calif., that actually plays music when you drive over it.
Don't take my word for it, drive the road for yourself on YouTube.
With thousands of miles of roadway owned by the state, California is sitting on an untapped stream of advertising revenue! Our highways could be singing with jingles like the one you hear on the road in Lancaster.
Best of all, the ads could be so loud, no drivers would be able to carry on conversations on their cell phones.
- Upgrade technology in state offices
I could be wrong, but I'm thinking that the equipment used in state offices may not be as modern as it could be.
There's a certain EDD office in Van Nuys where agents may be taking turns using an abacus to determine disability benefits.
It's just a hunch on my part. I'm not pointing any fingers or anything. I'm just a blogger, you know.
But why can't Arnold cut a deal with Office Depot and at least give every EDD employee a cheap calculator?
We'd all be better off. I sure know I would be.
Wednesday, April 1, 2009
Sometimes I look in my rear-view mirror and can't believe all that has happened to me this year.
Between my cancer diagnosis and radiation and chemotherapy, I've been through the wringer.
So can you blame me if some nights I just want to throw on a T-shirt and sweatpants, pour myself a nice tall syringe of Isosource, plop down on the sofa and watch "Bubble Boy"?
That's what I had in mind for Tuesday as I drove home from work.
Then I remembered that an author named Bill German was appearing at Book Soup in West Hollywood to read from his new book "Under Their Thumb: How a Nice Boy from Brooklyn Got Mixed Up with the Rolling Stones (And Lived to Tell About It)."
Bill German had the best gig in the world.
When he was a teen-ager, Bill heard his older sister play records like "Get Yer Ya-Ya's Out!" and "Sticky Fingers" and fell in love with the band, much like I got turned on to the Stones by hearing "Hot Rocks" bleed through the wall between my big brother's bedroom and my own.
At 16 years old, Bill began to publish a mimeographed Rolling Stones fanzine called Beggars Banquet. On the day after his high school graduation, Bill stood outside of a night club in New York City where the Stones were having a party, and handed copies of the zine to members of the band as they exited.
Then Bill started dropping off Beggars Banquet at the Stones' record label's office in Manhattan, leaving a few with the doorman at Mick Jagger's building in the Upper West Side, and tracking down Keef and Woody to give copies to them, too.
The Stones liked the zine, so they hired Bill to produce Beggars Banquet as the band's official fan magazine. And for 17 years and 102 issues, Bill German hung out with the Stones in their homes, followed them on tour and chronicled their activities for tens of thousands of Stones fans worldwide in the pages of Beggars Banquet.
Bill German's "Under Their Thumb" is a rollicking read that sounds like it was vetted by nobody's lawyers. Like the best Stones albums that you want to play again and again, as soon as I reached the end of "Under Their Thumb," I wanted to keep the groove going and go back to Page 1.
I just had to meet the guy who wrote this book in person. I drove into the Valley just long enough to snatch my copy of "Under Their Thumb" off my bookshelf and then I headed back over to the hill to catch Bill German at Goats Head Soup, I mean, Book Soup.
He was a hoot, reading from the book and recounting stories about the Stones that he couldn't publish during the years that he and Beggars Banquet were under their thumb, adding color to his performance by doing spot-on impressions of Mick, Keef and Woody.
After German opened up to accept questions from the audience, I slipped a note onto his lectern with my question: Did he ever do impressions of the Stones in front of the band members themselves?
Bill read my question aloud, and then said that Mick once asked him to sing back-up for him. He said he tried but came off sounding like Dwight Eisenhower.
I got in line to get my copy of "Under Their Thumb" signed.
When my turn with the author arrived, I handed Bill a note saying that I couldn't talk, but wanted him to thank him for the hours of laughter I enjoyed reading his book, especially in the days that I was beginning my treatments for cancer. I'm never reluctant to play that cancer card, I guess.
He wrote in my book, "To Paul – Hang in there, pal! All the best, Bill German."
I considered scribbling another note pointing out the irony of a Rolling Stones fan getting a diagnosis for tongue cancer, but I felt as if I had held the line up enough as it was.
Bill handed me back my copy of his book and shook my hand. And I gave him a big thumb's up.