Saturday, May 30, 2009

AIDS services under attack

In the AIDS/LifeCycle world, today is what we call "Day Zero": the day prior to the seven-day ride from San Francisco to Los Angeles.

Today is when 3,000 cyclists and hundreds of volunteer roadies gather at the Cow Palace in Daly City to turn in pledges, get camp tent assignments, watch videos on safety and attend to last-minute details before tomorrow's big rollout.

I'm hundreds of miles away from the Day Zero hubbub, but judging from posts I'm seeing on Facebook and Twitter, the mood in the Cow Palace is jubilant, and that spirit will serve as a seven-day tailwind pushing cyclists to the finish line in Los Angeles a week from today.

Since AIDS/LifeCycle's inception in 2002, more than $61 million has been raised for the HIV services of the L.A. Gay & Lesbian Center and the San Francisco AIDS Foundation.

That sounds like a lot of money, but the 2007 operating budget of the L.A. Gay & Lesbian Center alone was more than $40.7 million, and the Center received $32 million of its budget from government grants and the government-funded AIDS Drug Assistance Program. Much of the rest of the Center's budget comes from events like AIDS/LifeCycle.

This week, Governor Schwarzenegger proposed a "Day Zero" of his own for AIDS-service providers in California. In a budget proposal released on Thursday, the governor is threatening to reduce state general fund support of all Office of AIDS Programs activities to zero, zip, zilch.

What would that mean to HIV services in California? The State's General Fund annually provides funding for:

  • 80 percent of HIV education and prevention programs

  • 76 percent of HIV counseling and testing programs

  • 84.5 percent of epidemiology and surveillance programs

  • 51.2 percent of Early Intervention programs (EIP)

  • 100 percent of PCR and immuno/phenotype assays

  • 23 percent of AIDS Drug Assistance Program (ADAP)

  • 31 percent of Housing Opportunities for People with AIDS (HOPWA)

  • 54 percent of home/community based care

It's difficult to fathom how organizations like the L.A. Gay & Lesbian Center and the San Francisco AIDS Foundation would continue to be able to deliver services to the HIV community if the governor's proposal is accepted by the state Legislature.

This would be a good time to pick up the phone or sit down and write a letter to your representatives in Sacramento.
California State Assembly
California State Senate

It's also a good time to be grateful for the riders and roadies of AIDS/LifeCycle, and the donors who support them. Riders and crew will be arriving in Los Angeles next Saturday afternoon. For information, visit AIDS/LifeCycle website

Friday, May 29, 2009

Same old shtick

The risky thing about writing a blog based on real life is that life sometimes hits a dull patch.

Not that there's anything wrong with that. After all of the drama I've seen over the past six months, there's something comforting about sitting down to write and realizing that nothing blog-worthy has happened to me in the previous 24 hours.

And I think I'm in for a prolonged dry spell.

My next medical appointment with someone on my cancer team is a good three weeks away, and the appointment after that isn't till the end of June.

I haven't had an accident in my bed sheets for months, and I think I've exhausted the slapstick potential for stories about my trach and G-tube.

I don't have a boyfriend to write about, and I don't feel especially boyfriendable, though I can see how a guy who can't talk back or steal French fries off your plate would be a dream spouse to many guys.

My job doesn't produce scintillating blog fodder, thank God, because blogging about my job only could lead to an uncomfortable conversation in the HR department.

I don't have any cute animal companions to tell you about, unless you count the creepy critters I sometimes spot scurrying across the bathtub.

So please bear with me during these dry patches between doctor's appointments and milestones in my recovery.

Things may get a tad boring but don't abandon ship.

Thursday, May 28, 2009

Turning the other cheek

The need for men to shave always felt to me like some kind of twisted gender bias embedded in human DNA.

I know that women have their own set of inconveniences that men don't experience – and some of those horrify me– but at least women don't have to stand in front of a mirror every morning and mow a fresh crop of whiskers off their face.

I never was much good at manscaping my mug. Electric razors don't give me a close enough shave, and razors leave my face bloodied, like I have just escaped from Sweeney Todd's barber chair.

But cancer has given me a much-appreciated reprieve.

The effects of radiation on my face seem to have destroyed my body's ability to grow whiskers. Hair grows above my upper lip fairly robustly, and in random patches on my chin, but it doesn't grow on the rest of my face.

According to the literature my doctors have given me on the side effects of radiation and chemotherapy, the beard loss may be permanent.

Hey, I'm not complaining. I can always sprout a 'stache to remind myself of my manhood. In fact, I'm studying the packaging of Brawny paper towels to see if that might be a winning look for me.

Around the time that radiation was wreaking havoc on my facial hair, my best buddy started to allow his beard to grow out.

Just a short while ago, his beard's growth looked like how Granny Hall perceived Woody Allen's character in that scene from "Annie Hall." Currently, he's sporting more of a Paul Bunyan look, and he seems to aspire to become a doppelganger for one of the guitar slingers in ZZ Top.

It's a good look for him but frankly, I don't know how he's able to hold his head upright when the thing gets damp.

Me, I'm still hoping that my life reverts to normal in the wake of this cancer ordeal. But if the consequences of cancer treatment leave me saddled with this itty-bitty side effect, I'd be better off than I was before.

I'll take my Ser-Chia pet lip growth any day.

Wednesday, May 27, 2009

A sad day

The protests that followed the passage of Proposition 8 last November seem like a lifetime ago to me.

I rode my bike to all of the rallies and marches I attended: in West Hollywood, Hollywood, Silver Lake and in downtown L.A. I wasn't able to yell like most of the other marchers –my voice was already faltering– but just showing up in the streets in those days and weeks after Prop. 8 passed made a loud statement in its own way.

Like millions of other people, I was logged on to the California State Supreme Court's website on Tuesday morning as 10 o'clock approached, nervously refreshing my browser so I would see the court ruling the instant it was posted. In my gut, I knew that the court would uphold Prop. 8, but in my heart I was hoping against reason that Prop. 8 somehow would be overturned.

It reminded me of September 2005, when a bill legalizing same-sex marriage landed on Gov. Schwarzenegger's desk, and he faced the choice of vetoing it or signing it into law. I was working with an advocacy group fighting for marriage equality at the time, and I thought the governor just might decide to stun everyone and sign the legislation. We had news releases prepared in the event of either outcome.

Gov. Schwarzenegger didn't sign the marriage equality bill in 2005, and he didn't make marriage equality a reality in 2007, either, when the state Legislature sent a similar bill to the governor's desk.

That step forward was taken by the State Supreme Court last May.

Now the court has taken a step backward by upholding Prop. 8. The governor tweeted his reaction –"I believe one day CA will recognize gay marriage but I will uphold decision. Made right choice allowing 18K marriages before vote to stand"– and then went on the Tonight Show, while outraged Californians marched in cities across the state.

I decided to sit out Tuesday's demonstrations. Some days, by the time I get home from work and pour dinner down my tube, my energy is depleted, and Tuesday was one of those days.

The news on Tuesday wasn't all bad. The court did state that the 18,000 same-sex unions that took place last year between June and Election Day remain legal.

I'm happy for those 18,000 couples. I know a bunch of 'em and believe they have just as much of a right to remain married as anyone.

As for the rest of us, well, Tuesday's ruling is a sad moment for California. In the eyes of six justices of the California Supreme Court and 52 percent of California voters who approved Prop. 8 last November, gay men and lesbians are second-class citizens who don't enjoy the same rights as everyone else.

Despite what the governor may tweet, marriage equality in California isn't inevitable. There's a lot more ground to cover in this fight, and there's too much at stake for people who care about their rights to sit on the sidelines.

Tuesday, May 26, 2009

What would Mister Magoo do?

The other night I stepped up to the box office of a movie theater on Hollywood Boulevard to buy a ticket.

After I held up a single finger, the woman on the other side of the glass looked at me and asked, "Senior or adult?"

I grabbed a pen, wrote "ADULT!" across the front page of a newspaper I was carrying, and then underlined it a few times.

I was stunned. No one had ever offered a senior discount to me before! At 51 years old, I'm a good decade away from being able to legitimately qualify for discounts available for senior citizens.

I stewed in my seat awhile, pondering what might have prompted the woman in the box office to think I was a senior citizen.

I don't wear Mister Magoo glasses. I wasn't toting a box of Depends. I have a full head of hair and it's not glued to my scalp.

As I waited for the movie to begin, I sent a text message to a friend about the slight at the box office window. He texted back: "Smack her."

Soon the lights went down, and I forgot about the insult.

A few days went by, and on Monday I went to a friend's Memorial Day barbecue. On Monday evening, I started to get emails telling me that people at the barbecue were posting photos from the party on Facebook and tagging me in them.

I opened one of the photos and thought, "Say, who is that geezer? Was he at the party? Sure don't remember seeing him."

Then I recognized the Paul Frank kerchief around the geezer's neck and realized that the geezer was ME!

Throughout the evening, I got alerts from Facebook that I had been tagged in more photos from the party. I looked old in every one of 'em!

Sometime over the past six months or so, I've been catapulted into the middle of the 21st Century. This may be a result of the effects of cancer; it could be AIDS finally catching up with me; it may be the fact that the situation with my mouth prevents me from wearing my dentures, giving me that tell-tale "Grampa forgot to put his choppers in" look.

Whatever it is, I might as well just accept it.

And start milking dem senior discount opportunities.

Monday, May 25, 2009

More tongue troubles

Turns out that the road to recovery isn't a one-way street.

Just when I thought that I was making solid progress in getting cancer behind me, and my weeks of coping with a swollen tongue were becoming only a dim memory, I've had three consecutive days of tongue swelling.

At the same time, the lower left side of my face is numb to the touch.

I brought up the numbness sensation with Dr. B1 on my last visit. He told me it wasn't unusual, and could go away with the passage of time. But he also warned me that the numbness may be here to stay.

It's been exactly two months since my radiation and chemotherapy treatments concluded, so I'm still in that window period where it's too soon to determine if the first round of treatments succeeded.

I'm trying not to dwell on each and every twitch, throb or tingle that I feel. I don't go back to see Dr. B1 for another three weeks, and a week following that I have a PET scan scheduled.

A PET scan may do to any lingering cancer cells in my body what George Bush tried to do to terrorists lurking in the caves of Afghanistan: it'll smoke 'em out.

The next step in Bush's strategy was to bring terrorists to justice.

I'm not feeling that generous toward my cancer cells, frankly. Doc, let's skip the military tribunals and execute my cancer cells on the spot.

Friday, May 22, 2009

The great escape

I'd go nuts if all I did was wring my hands and moan about cancer.

So every now and then, I tell cancer to buzz off.

Movies are my preferred escape hatch from this miserable disease.

If I'm not plopped on my sofa pouring Isosource in my belly while watching "Bubble Boy" for the umpteenth time, I'm slouching in a movie theater, probably with my shoes kicked off and my feet resting on the seat in front of me.

For someone looking to hide out from his or her troubles in a dark movie theater, L.A. is great city to live in. You're not limited to seeing the latest blockbuster, stuffy, arch art films or sterile cartoons animated in 3D. If you know where to look, you can always find something stimulating screening in this burg and I'm not only talking about the films that play at the Tom Kat in West Hollywood.

This week, I escaped to the movies to forget about cancer three times and not one of the films I saw starred Tom Hanks or a Vulcan.

On Sunday in Eagle Rock I caught a 1928 silent feature called "Laugh, Clown, Laugh." Lon Chaney plays a traveling circus clown named Tito who finds an abandoned child tied to a tree. Tito raises the child as if she was his own, and then he falls in love with her, and she with him.

I think "Laugh, Clown, Laugh" was a direct inspiration for Woody Allen and Soon-Yi.

Two nights later, I went to the Skirball Cultural Center and saw the 1941 drama "How Green Was My Valley." The title sounds like a question but it wasn't. Anyhow, the valley wasn't green at all; it was black and white. They should have titled this film "How Red Was My Bare Bottom" or "Citizen Caned" because the narrator, a young Roddy McDowall, really gets some lickings over the two hours of this film.

So while these two films may have raised disturbing concerns like incest and child abuse, for two whole evenings, I was able to take a vacation from cancer.

Then on Thursday, at the Egyptian Theatre in Hollywood, I saw Dalton Trumbo's "Johnny Got His Gun," from 1971.

I didn't know much about this film going in, so I settled in for another evening of escapism from my troubles.

"Johnny Got His Gun," set during World War I, tells the story of a 19-year-old soldier named Joe Bonham, who gets severely wounded in an artillery blast and wakes up in a hospital bed surrounded by doctors. Gradually, we learn that Bonham has lost his arms, his legs and his face, but his brain remains active. The movie combines Bonham's memories and fantasies and the tragic reality of his existence, virtually immobile in the hospital bed.

Bonham is mostly concealed with sheets and a hood during the scenes in the hospital but his neck is exposed. To my surprise, it turns out that Bonham has been given a tracheotomy.

When the trach first was shown, my buddy nudged me and said something like "maybe this isn't a movie that you really want to see."

Well, I didn't find the trach disturbing –although judging by how much Bonham's trach resembled mine, it appears that trach technology hasn't advanced much since the early 1900s.

What is disturbing was the fact that wars continue to be waged nearly a century after the time that "Johnny Got His Gun" was set, and we just keep getting more efficient at manufacturing casualties.

The ending of the story is as bleak as any ending to a movie that I have ever seen. So I can't really claim that my evening watching "Johnny Got His Gun" was escapism in any way, certainly not coming on the eve of Memorial Day weekend.

So tonight I'm purging the melancholy taste that the film left in my mouth by heading to the El Capitan to see "The Boys," a documentary about Richard and Robert Sherman, brothers who were composers for Disney films like "Mary Poppins," "The Jungle Book" and "Winnie the Pooh," and who even composed the song "It's Great Big Beautiful Tomorrow" from Disneyland's Carousel of Progress attraction.

I'm not expecting "The Boys" to bring me down. But if I get a close look at Tigger, and realize that his tail is actually a G-tube, I'm going to ask for my money back.

Thursday, May 21, 2009

New Jersey state of mind

Just because I'm not riding my bike yet doesn't mean I can't dress up and pretend.

As my cancer tumor shrinks, my cycling wardrobe keeps growing. No fewer than two spiffy brand-new cycling jerseys are headed my way.

The first one is the 2009 Positive Pedaler jersey.

Positive Pedalers is a group of riders and roadies who are living with HIV/AIDS, and I'm been a member since 2006. Each year, Pos Peds produces a new edition of a cycling jersey in time for AIDS/LifeCycle, and this season's model is shown here.

It's a beaut, ain't it? Is "curvaceous" only a girly word? Because I'm thinking that after I slip on this baby, it will create an illusion of perkier pecs and slimmer hips. As long as I avoid developing man boobs in the autumn of my days, I'll be wearing my '09 Pos Ped jersey for years to come.

The message on the sides of the Pos Ped jersey, "eliminating stigma," speaks to the heart of the Pos Ped mission.

The second jersey headed my way, also shown here, is the limited edition jersey produced by the AIDS/LifeCycle gang for any participant who raises $5,000 or more for the cause. In my case, the funds I raised for ALC 8 benefit the HIV services of the L.A. Gay & Lesbian Center.

Snazzy, eh? The question posed on the front of this jersey "What can a hero do in seven days?" is answered on the back: "Raise over $5,000. Ride 545 miles. Make a difference. Ride to end AIDS."

After my fund-raising got sidelined by this cancer mess and I sputtered out before making it to $3,000, I didn't think I would reach my target of raising five grand this year. Then my friend Laurie offered to send a letter to her friends asking them to support my participation in AIDS/LifeCycle 8. My ALC fund grew by another $2,000 just from Laurie and her generous pals.

I don't truly deserve the "hero" label on my new ALC jersey –each and every one of my donors do. But heck, I'll wear it anyhow.

My next step is actually getting my butt in the saddle and riding.

Being a cyclist is not only about looking purdy.

Wednesday, May 20, 2009

Caution: optimism ahead

It's been less than two months since my first round of cancer treatments at Kaiser concluded, and one of my docs says that he is "cautiously optimistic" that they succeeded.

I can accept that. Heck, I'll take cautious optimism over buoyant pessimism any day.

Expressing cautious optimism may sound like my doctor is hedging his bets in case I croak. My reasoning skills may be clouded by chemo, but I don't see it that way.

Doctors don't have anything to gain by cooing sweet nothings that are pleasing to their patients' ears.

It's not like my doc is competing with Dr. Adam Lambert and desperately needs my vote to be elected as America's new Medical Idol and continue practicing medicine.

He's a doctor, not a fortune teller. If I wanted to hear in black-and-white terms whether I'm going to recover from this ordeal, I'd get my palm read. Since that procedure is not covered by my HMO, I'll hang on to my doc's forecast.

So as I wait to learn the outcome of my treatments, I've been doing some research. Turns out that cautious optimism is breaking out all over this spring.

  • Normally very guarded in his assessment of the surge [in Iraq], General David Petraeus now expresses cautious optimism. –ABC News

  • As troubles escalated in recent weeks for ailing Chrysler, Doug Swaim, general manager at Star Chrysler Jeep in Glendale, was cautiously optimistic. –Los Angeles Times

  • " 'Cautious optimism,' that's how we characterized Fed Chairman Ben Bernanke's remarks today. But should we –and, more importantly, should he– emphasize the 'optimism' or the 'caution'?" –PBS

  • "We are cautiously optimistic that what we are seeing right now is presenting itself as a much milder [swine flu] virus than the initial cases." –Los Angeles Times

  • "I'm cautiously optimistic," said Rick Thorpe, the MTA's chief capital management officer, that "things [on the 405 Freeway] will continue to improve and the state will issue the bonds as they have been." –Los Angeles Times

  • "We're cautiously optimistic," said Jeri Crawford, who will become the Nevada Ballet and Philharmonic's president in May. –Los Angeles Times

  • Homeland Security Secretary Janet Napolitano gave a "cautiously optimistic" outlook. "We have started to see encouraging signs that this virus may be mild, and its spread may be limited." –VOA News

  • [Starfleet Officer] Jerry Conner says he's followed the breadcrumb trail of details and hints about [the movie "Star Trek"]. He calls himself "cautiously optimistic" about it. –West Virgina Gazette

  • Barack Obama said he's "cautiously optimistic" about his chances [on Election Day], but McCain is putting up a tough fight. –CBN News

That last citation really gives me hope. I've yet to come across any evidence that anyone in the McCain camp was optimistic –cautiously or not– about their chances to be elected to the White House.

Call me a Pauly-anna, but I have a hunch that my doctor's cautious optimism is gonna break in my favor.

Tuesday, May 19, 2009

Mo's moxie

When I read the news about Maureen Dowd on Monday morning, I was speechless.

OK, OK. So I would have been speechless even if I hadn't read the news about Maureen Dowd.

My point is that hearing that my favorite newspaper columnist had inserted a whole paragraph from a popular blogger into her Sunday piece on Waterboardgate in the New York Times, without attribution, shocked and awed me.

In her Sunday Times column titled "Cheney, Master of Pain," Dowd wrote:

"More and more the timeline is raising the question of why, if the torture was to prevent terrorist attacks, it seemed to happen mainly during the period when the Bush crowd was looking for what was essentially political information to justify the invasion of Iraq.”

In the TPM blog three days earlier, Josh Marshall wrote:

“More and more the timeline is raising the question of why, if the torture was to prevent terrorist attacks, it seemed to happen mainly during the period when we were looking for what was essentially political information to justify the invasion of Iraq.”

It didn't take long for the whiff of plagiarism to rise.

And it took just a jiffy for Dowd to leap to her own defense. In an email to Huffington Post, which links to the TPM blog, Dowd insisted that she never read Marshall's blog, but acquired the line about torture from a friend, "and I wanted to weave the idea into my column."

And then, in a Times correction published on Monday, the Grey Lady with the Red Face admitted that Maureen mirrored Marshall in her column. The incident even made the national news roundup in Monday's Los Angeles Times.

Ironies are sprouting like kudzu!

It was Dowd who unveiled then-presidential contender Joe Biden's plagiarism of a British politician more than 20 years ago.

One month ago, Dowd criticized the CEO of Google for "hijacking journalism" by freeloading from print media, and wanting "to profit so profligately from newspaper content at a time when journalism is in such jeopardy."

And four years ago, Dowd published a book asking "Are Men Necessary?"

Well, who's hijacking whom?

And while Dowd may stand by her 2005 book's hypothesis that "men are now the weaker sex," that didn't prevent her from reaching into a certain male blogger's bag of prose to help her flesh out an 800-word column on one of her signature topics.

I still love Mo D and will keep plunking down a buck-fifty on the counter of my local 7-11 to read her in the Times.

But now I see cracks in Dowd's ruby-red lipstick and will wonder if "Dowd" isn't just shorthand for Dittohead.

Dowd's deed doth disappoint.

Monday, May 18, 2009

Further down the ballot

Been following the news lately? Then you know about the six state measures that voters will decide in Tuesday's special election: Propositions 1A through 1F.

You may not know that the state ran out of money and couldn't afford to print enough pages in the Voter Information Guide to describe 18 additional measures on tomorrow's ballot.

You don't want to vote without being prepared, so make a copy of today's post and take it to your polling place.

  • Proposition 1G: Grants the sitting governor a 28% stimulus to his approval rating.

  • Proposition 1H: Increases the state's "rainy day" fund by 5% on days when actual rain falls in California.

  • Proposition 1I: Redefines the constitutional role of state legislators to standing at busy intersections in their districts, spinning bright placards and acting the fool.

  • Proposition 1J: Allows the State Treasurer to sell advertising space on the California flag.

  • Proposition 1K: Allows the State Treasurer to wrap an advertising billboard around El Capitan in Yosemite.

  • Proposition 1L: Allows state prison authorities to house new inmates in abandoned GM and Chrysler dealerships.

  • Proposition 1M: Grants children the option of swapping their right to a K-12 education for a one-way Greyhound ticket to the state border.

  • Proposition 1N: Allows the State Treasurer to invest up to 25% of incoming revenue in lottery scratchers in other states.

  • Proposition 1O: Downsizes the number of seats on the state Supreme Court from seven to three, and replaces the remaining justices with Simon Cowell, Randy Jackson and Paula Abdul.

  • Proposition 1P: Provides for the Miss California title to be awarded to the highest bidder.

  • Proposition 1Q: Applies a tax on stupidity. Tax doubles during any campaign season.

  • Proposition 1R: Challenges voters to name the Lieutenant Governor; returns his or her salary to the State Treasury if the measure fails.

  • Proposition 1S: Calls for the University of California to shut down its brick-and-mortar campuses and educate students on Twitter instead.

  • Proposition 1T: Allows the State Treasurer to sell advertising space on the back of the California bear.

  • Proposition 1U: This proposition intentionally left blank.

  • Proposition 1V: Creates a new "muggy day" fund.

  • Proposition 1W: Allows the State Treasurer to sell the state name to the highest bidder.

  • Proposition XYZ: Grants the governor the right to bring any losing proposition back to the voters for a two-out-of-three match.

Friday, May 15, 2009

Let's get physical

The Tongue Fairy passed up my apartment again on her rounds last night.

I go to bed each night hoping to get a visit from the Tongue Fairy while I sleep, and to wake up in the morning chattering a blue streak. The pragmatist in me knows that ain't gonna happen.

Still, I keep praying for a vowel movement.

My tongue is gradually diminishing in size, but it still doesn't move so well, and my left jaw is weak. If I had been born as an amphibian and needed to use my tongue to capture flies, I'd starve.

So a few weeks ago I handed a note to one of my doctors in the Radiation Oncology Department in which I asked what I should be doing to promote recovery of my mouth. He gave me a referral to Kaiser's Physical Medicine and Rehabilitation Department.

I had my first appointment there on Wednesday night.

Physical Medicine is one of the departments that still remain in the massive hospital that Kaiser recently abandoned for snazzier digs next door. Exam areas are separated by curtains, not walls, making it easy to eavesdrop on the other patients' sessions.

I was led to the area by Lamont Toma, D.P.T., the physical therapist assigned to my case. Dr. T., a wiry young man with long hair and street clothes instead of the usual Kaiser scrubs, got things rolling by asking to give him an overview of what's going on with me and to tell him what I hoped to get out of physical therapy.

"Being treated for cancer in my tongue," I wrote in my legal pad. "Gradually getting better. Need to find out what I can do to help me begin to speak again."

Dr. T started the exam by pressing his hands all over my face and head, and asking me to raise my hand if I felt any pain. I usually find it hard to relax in situations like this, but there was something about Dr. T's manner that I found calming.

He asked me to open my mouth as wide I could, stick my tongue out as far as possible, and move my jaw from one side to the other. As I followed Dr. T's cues, I realized how severely restricted my mouth movements are.

Then Dr. T snapped on a pair of gloves and got down to the serious business: probing the inside of my mouth.

It wasn't that long ago that my doctors had trouble getting a single finger in my mouth for a tactile exam but Dr. T was able to get several fingers in my mouth at the same time. I laid on my back with my mouth open as wide as I could get it while he applied pressure to my gums and my jaw.

It was my turn to probe next. Dr. T handed me a few tongue depressors and told me to insert them into my mouth and apply pressure on one side. He fed me more and more tongue depressors, two or three at a time, until I couldn't handle anymore; then we did the same on the opposite side of my mouth.

I felt silly –and I must have looked ridiculous– but I could feel my mouth and jaw start to loosen.

Then Dr. T took the tongue depressors out of my mouth and disappeared for a few minutes. When he came back, he had a blue carrying bag in his hands. He unzipped the bag and showed me a device called a TheraBite.

The TheraBite is a plastic gizmo that I can use on myself to practice my jaw motion. It's like a Thigh Master for your mouth. Dr. T couldn't let me try out the demo model, but he said he would recommend that Kaiser supply me with a TheraBite of my own.

It may take three or four weeks for Dr. T's request to go through, but once it does and I start working out regularly with that TheraBite, baby, my mouth is gonna be as supple as Suzanne Somers' thighs. Even Alan Hamel would be impressed.

I'm counting on the TheraBite to give me my jaws back.

Before long, I hope to be able to look at myself in the mirror and say: "Mr. Spielberg, I'm ready for my close up."

Thursday, May 14, 2009

Not the usual spin

The Human Resources Department at my workplace sent an email the other day encouraging employees to ride a bicycle to work today.

When I saw the email, I felt like a priest who didn't realize that it was Christmas. Today is Bike to Work Day in Los Angeles County, and it had slipped completely under my radar.

Before I got sick, I was always peddling the pedaling cause. I rode my bike to work every day and parked it near my desk. At lunch time I often went out for a short spin around the neighborhood, and then I rode it back home at night.

I haven't ridden my bike since last November. In fact, my bike is still parked on the same patch of real estate in my living room where I left it when I rode home from work on the Wednesday before Thanksgiving.

After one of my co-workers asked me if he would see me on my bike today, I made an on-the-spot decision to do so.

Later I told my best friend that I planned to hop back in the saddle today, and he said that he wished that I wouldn't.

My friend knows me better than anyone and he often serves as a liaison between me and the doctors who treat me. He doesn't think that I'm ready to start riding just yet, and he may be right.

Out of respect to my buddy, I'm leaving my bike home today. I won't have to scramble around the apartment to find my riding shoes and a spare tube, and I won't have to worry about sputtering out of breath climbing the Cahuenga Pass –which isn't all that steep but after being idle for six months, I just might not have the strength to tackle.

Sitting out Bike to Work Day doesn't mean I can't still celebrate the cycling cause.

It gives me a great segue into making another pitch for AIDS/LifeCycle. My ALC 8 fund is inching toward my goal to raise $5,000 for the HIV services for the L.A. Gay & Lesbian Center. Once I add in a donation that a family member mailed to the Center last week, I'm just $64 shy of my goal.

So the $64 question is: Am I gonna make it to my goal by the time AIDS/LifeCycle 8 begins?

You can help me answer that by donating to the L.A. Gay & Lesbian Center on my AIDS/LifeCycle page.

I know that times are tough all over. So without spending a dime, you can also support the Center by making GoodSearch your tool for searching the internet and by selecting the L.A. Gay & Lesbian Center as your favorite charity. Each and every time you perform a search from GoodSearch, the L.A. Gay & Lesbian Center –or any other charity you designate– gets a donation.

It's only pennies, but those coins do add up when thousands of people are pitching in.

Time to climb down from my soapbox and get to work. I'm leaving my bike behind, but it's not out of mind.

Won't be long before every day will be Bike to Work Day.


When you're out driving –today and every day– be on the lookout for cyclists. Not all cyclists ride responsibly, unfortunately, but many do. Please share the road with all of them and help them get to their destinations safely.

Wednesday, May 13, 2009

Which way to recovery?

A surefire way for a news reporter to flub an assignment is by "burying the lede," or leaving the most important part of a story out of the first paragraph.

If someone covering the performance at Ford's Theatre on April 14, 1865 waited till the fourth paragraph to mention the disruption in the State Box in the middle of Act III, that would be burying the lede.

Well, the doctor who examined the results of my recent MRI at Kaiser buried the lede in his report on the procedure.

I had the MRI performed on Thursday, and I got a copy of the report during my appointment with Dr. B1 on Tuesday.

If you've been following this blog, you may remember that Dr. B1 is my head-and-neck doctor and Dr. B2 is who I see in the oncology department.

You may find this hard to swallow –in my condition, I find everything hard to swallow– but the surname of the doctor in diagnostic imaging who wrote the MRI report also begins with the letter B.

So my Kaiser medical team is complete: Dr. Thiamine, Dr. Riboflavin and now Dr. Niacin: Drs. B1, B2 and B3.

Dr. B1 gave me a rigorous head exam on Tuesday.

He looked over my tongue and said that it appeared much less swollen than it did early last month. He put his fiber optic camera in my nostril and down my throat and said he could see improvement there, too. Then he slid the camera into my trach and saw no problems in my windpipe.

After taking a peek inside my ears, however, Dr. B1 said that he saw quite a bit of wax so he led me to another room and removed it.

Then he called up Dr. B3's report on my MRI on his computer. I read over Dr. B1's shoulder as he pointed out the highlights.

Dr. B3's report begins optimistically enough. I know the meanings of only about every other word, but the words and phrases I do understand were pleasing to hear:

". . . decrease in the amount of soft tissue mass . . ."

". . . the base of the tongue demonstrates marked improvement . . ."

". . . appears significantly decreased in size . . ."

". . . no new lymphadenopathy . . ."

Then, a string of words in the fifth paragraph jumped out:

"There is, however, persistent disease . . ."

Talk about burying the lede! When I heard the words "persistent disease," I wanted to tell Dr. B1 to pack that wax back in my ears so I wouldn't be able to hear any more.

Dr. B1 tried to put me at ease. He said that he was going to send my MRI around to some of the other doctors involved in my case so a clearer picture of what's going on with me might emerge, and he wants to see me again in five weeks.

Before I headed back to work, I sat in my car and read the MRI report three or four times. I found it hard to avoid focusing on that "persistent disease" phrase, but I also had to acknowledge all of the positive signs that Dr. B3 observed in my MRI.

Next steps?

One, getting an assessment of my condition from my radiation oncologist. Two, having another MRI or CT scan performed, probably in June. And three, seeing if physical therapy can help me recover my speech.

In short, I'm keeping up my march toward recovery, damning the flares and the road signs that warn of "Persistent Disease."

Reader, that is my lede. And shame on me. I buried it in the 24th graf.

Monday, May 11, 2009

A familiar face

I know that I'm not the only guy in the world with a trach in my neck. But it feels that way sometimes.

The plastic tube that I felt on my throat when I woke up in the hospital on January 14 is the first trach that I ever saw, to the best of my memory. It was a jarring sight at first, but I've gotten used to it.

For four months, I've been hoping to spot a trach in someone else's neck, but up until a few days ago, that hadn't happened yet.

I guess I'm just not very observant. A woman with a trach nearly identical to mine was one of the biggest newsmakers in the U.S. last week, and I completely failed to notice.

I'm talking about Connie Culp, the Ohio woman who was shot in the face five years ago by her husband, who then shot himself. Ms. Culp survived, but the attack left her without a face.

In December, after 30 surgeries that attempted to reconstruct Ms. Culp's features, she became the nation's first face transplant recipient. One week ago, in a news conference at the Cleveland Clinic, Ms. Culp showed her brand-new face to the world.

The historic face transplant was reported in both of the newspapers I read, and each paper showed before and after photos. In the pre-transplant photo of Ms. Culp that was released –you can find it here, she is clearly sporting a trach very much like the one I have.

A friend mentioned her trach to me a day or so later. I realized that I found the photos upsetting to look at when I saw them in the paper, I only glanced at the reports on the transplant and then quickly turned the page.

I've caught up with Connie Culp's saga since, and I'm inspired by her courage and strength.

She and I both have a lot to be grateful for, including the plastic tubes in our windpipes that make it possible for us to breathe.

Without them, neither one of us would be alive today.

Saturday, May 9, 2009

Remembering Mom

I don't have a lot of words in me today but I do have some photos to share.

Above is a photo of Mom, Dad, my brother and me at Disneyland on June 4, 1968. It just may be my favorite photograph in the whole world. We were in Tomorrowland. The landscaping is different now, and the black fountain is gone, but the rest of the site still stands. I'm the kid with the chubby legs, on the right.

Above is another photo of my family. This one was taken 36 years later, at Mom and Dad's 50th wedding anniversary party. This is one of the last photos taken of my family, and it documents one of the last times that all four members of my family were together. I love my parents' smiles in this photo.

And this is Mom, at the same party. Mom hated having her photo taken, but I'm glad that she allowed the photographer we hired to snap photos of her all evening. Mom and Dad traveled from their home in Tennessee to my brother and his wife's home in Thousand Oaks for the party. A lot of their friends and our relatives were there.

Mom died on Sept. 24, 2007. This is our second Mother's Day without her. Dad is still living in Tennessee, and I know he'll be visiting Mom's gravesite at the V.A. on Mother's Day. My brother and I will be with him in spirit, and so will my brother's wife and Mom and Dad's two grandchildren, Mom's sister and her family, and many others.

I still try to stay in touch with Mom. There are even days when I reach for the phone and think that I can reach her. When I'm having a rough day, I think of Mom's incredible strength and her humor, and that helps pull me through.

Happy Mother's Day, Mom. I love you and I miss you.

Friday, May 8, 2009

Take a number, and take a nap

5:33 p.m.: Park my car in front of the Imaging Center. Tell myself that I am such a clever clog for checking in 90 minutes early for a 7 p.m. MRI appointment.

5:34 p.m.: Woman at the reception counter tells me that the MRIs are running "two to three hours behind." Advises me to go home and come back at 9 o'clock. I take a seat in one of the three chairs facing the counter. "You want to sit there and wait five hours?!" the receptionist asks.

5:36 p.m.: Set up camp in the reception area, potentially for the entire evening or even overnight. Lay my backpack down on the chair to the left; pile my newspapers on the chair to the right; kick off my sneakers. Territory established, I fold my arms and glower in the receptionist's general direction.

5:41 p.m.: Begin to doubt that I have enough glower in me to last five hours.

5:45 p.m.: Receptionist beckons me to the counter with her finger. Hands me a clipboard with a form to complete.

5:47 p.m.: Accidentally check the "yes" box after the question "Have you ever been wounded by shrapnel?" Wonder if I am harboring some long-suppressed battlefield memories. Cross out the "yes" and draw a series of circles around "no." My form looks as if it has been wounded by shrapnel.

5:52 p.m.: Hand form and clipboard back to the receptionist. Have potentially four and half more hours to kill before it's time for my MRI.

5:54 p.m.: Unfold Thursday's edition of the L.A. Times. Find myself captivated by an article that reveals that employees of In-N-Out Burgers are held to "rigorous standards of performance and behavior."

6:01 p.m.: Glower over the brim of the newspaper at the receptionist.

6:01:30 p.m.: Shift my glance to the waiting area's only other occupant, a bald man roughly my age who hasn't budged from his seat or changed position since I walked through the door. Attempt to establish camaraderie by pointing at a pretend wristwatch and rolling my eyes.

6:13 p.m.: Book slips from the bald man's hands and lands on the floor with a thud. Wonder if he may be dead.

6:13:15 p.m.: Mood brightens. If the bald man is dead, that means I may get in sooner for my MRI.

6:17 p.m.: Hear faint snoring. Sigh heavily and begin to read the entertainment section of the paper.

6:21 p.m.: Nervously ditch the newspaper after realizing that I am sexually attracted to the new Spock.

7:00 p.m.: "Two and a Half Men" begins on the waiting room television. Receptionist moves her chair closer to the screen and turns up the volume to a near-deafening level.

7:03 p.m.: Phone rings; after several rings, receptionist answers. Think I hear her tell the caller that she is busy. She hangs up and resumes watching "Two and a Half Men."

7:07 p.m.: Decide I would rather face waterboarding than continue listening to Charlie Sheen and the laughter that follows every one of his lines. Try to obliterate the screech of the television by thinking loudly.

7:08 p.m.: Desperately struggle to think of anything but Charlie Sheen. Find myself trying to remember if Emilio Estevez is a Baldwin brother or a Sheen distancing himself from Charlie.

7:09 p.m.: Mind richochets; settles on Alec Baldwin. Wonder if Howard Stern is still making fun of him on his radio show that no one ever talks about.

7:10 p.m.: Mind darting all over the place. Try to pinpoint the year Alec Baldwin got fat. Was it before or after "Glengarry Glen Ross"? Was it when he started to get political? Does IMDB state when actors get fat? Now that Ben Affleck is political, will he get fat? Could Ben Affleck be the next Alec Baldwin? The next John Candy?

7:12 p.m.: Door to the exam room pops open. A woman in scrubs calls out a name. Not mine. Bald man wakes up, picks up his book, and follows the woman in scrubs into the exam area.

7:13 p.m.: Begin to stare at the door to the exam room, willing it to open. I've been here 99 minutes, and may have hours more to wait.

7:29 p.m.: "Two and a Half Men" finally ends. Television volume restored to bearable level.

7:47 p.m.: Door swings open! I must be the Amazing Kreskin. Woman in scrubs says good night to the bald man, who's wearing a satisfied grin and buttoning his shirt. Wonder if I inadvertently made my MRI appointment at a massage parlor fronting as an imaging center.

7:47:15 p.m.: Woman with scrubs calls my name. I'm in! And just 47 minutes after my schedule appointment. Wink at receptionist as I pass. Tell myself I am a clever clog after all.

Thursday, May 7, 2009

Angels among us

My Isosource inventory more than doubled yesterday, thanks to two people with halos over their heads.

My longtime friend Marcy is a registered dietitian who works as a program manager at the L.A. County Office of AIDS Programs and Policy. Years ago, Marcy and I worked together at AIDS Project Los Angeles, and we still stay in touch. Marcy is one of the saints who have supported me every time I raised funds for APLA's AIDS Marathon and the L.A. Gay & Lesbian Center's AIDS/LifeCycle.

My new friend Orville is a registered dietitian at Project Angel Food, an organization that provides meals for people living with HIV/AIDS, cancer and other life-threatening illnesses. Project Angel Food, now celebrating its 20th anniversary, recently moved into a building on Vine Street in Hollywood, just down the road from a site once occupied by APLA.

Someone donated seven cases of Isosource to Project Angel Food, but the organization doesn't distribute liquid supplements to its clients. Orville didn't want the Isosource to go to waste, so he got in touch with Marcy and she told him that she knows someone who uses the product.

Last night after work, I stopped at Project Angel Food and picked up the gift. All I was required to do was hold the door open for Orville and five other Angels as they carried the cases of Isosource out of the building and loaded them into my car.

I now have enough Isosource to get me through the middle of the summer. Or maybe I'll host a big Memorial Day bash for the G-tubers of greater Los Angeles.

Thank you, Marcy, and thank you, Orville and Project Angel Food for the many meals to come.


Wednesday, May 6, 2009

Ride on, Pos Peds

Stevie at the L.A. Gay & Lesbian Center was looking for someone to write a paragraph about Positive Pedalers on Tuesday and came knocking on my door.

Positive Pedalers is a group of cyclists and cycling supporters who are living with HIV/AIDS. I've been a Pos Ped since I started to ride in AIDS/LifeCycle in 2006 but my cancer diagnosis and surgeries sidelined my cycling. I haven't been in the saddle of my bike since last fall.

I guess that makes me a Pause Ped.

The piece that the Center wants will be in the Daily Spin: a newspaper published each of the seven days of AIDS/LifeCycle 8. Now in its eighth year, ALC is a 561-mile bike ride from San Francisco to Los Angeles. But because my chances of riding in ALC 8 later this month are dim –it's more likely that Judge Judy will be nominated to replace Justice Souter on the Supreme Court– I referred Stevie to a few active Pos Peds.

I also received the monthly email from Positive Pedalers on Tuesday.

In the May Brew-Ha-Ha, Pos Ped Ginger Brewlay lists rides taking place all over the nation, recaps a recent AIDS ride in Texas, and passes along last-minute tips for Pos Peds who are participating in ALC 8.

Each edition of the Brew-Ha-Ha closes with the Pos Peds mission: "We are a group of people committed to eliminating the stigma of disease through positive public example."

The phrase "eliminating the stigma of disease" popped out at me when I saw it on Tuesday.

It's not only the stigma of HIV/AIDS that Pos Peds seek to eliminate; we are opposed to stigma of all disease.

I'm wondering if it's such a good idea to sit out AIDS/LifeCycle 8 just because I have a cancer diagnosis, a tracheotomy and a G-tube. I didn't let my AIDS diagnosis get in the way of riding in ALC 5, ALC 6 and ALC 7, but AIDS never complicated my life in the way that cancer has.

The hour is late for me to sweep aside the dust bunnies collecting beneath my bike and prepare to ride in ALC 8. Most Pos Peds are now packing in back-to-back centuries in the saddle in anticipation of the ride. It's hard for me to imagine catching up with them. And I can't fathom managing G-tube feedings on my bike, or staying hydrated in 100-degree weather by pouring water and Powerade down the tube.

I keep telling myself I won't make up my mind about participating in ALC until the last minute.

Best I can promise is that I'll be at the ALC 8 finish line on June 6 to greet my fellow Pos Peds as they complete the ride, slaying stigma with every stroke of their pedals.


As my butt creases from sitting on the fence about AIDS/LifeCycle, why not visit the home pages of some of my friends who are doing the ride? Get to know Beau, Nathan, Shirley, Matt, Eric, David D., Wilfredo, Jim W., Garrison, Bob O., David S., Billy, Bob K., Ginger Brewlay, Mark (hey, Mark's waving at me in the photo on his page!), Brendan, Jim V. (no one looks better than Jim in a red dress), Chris, Brian, Janne and Jerry. They're all gems! And they welcome your support.

Tuesday, May 5, 2009

You say hello, I say mmmm mmm

After decades of annoying me, telemarketers are getting their comeuppance.

I may have lost my voice, but I still have a robust mumble. Lately, I bet that the telemarketers who reach me are convinced that they have dialed the monkey compound at the L.A. Zoo by mistake.

Monday, 6:35 p.m. A telephone rings at the Serchia household.

Me: "Mmmmm?"

Telemarketer: "Good evening. Is Mr. Serchia available?"

Me: "Mmmmm mmm."

Telemarketer: "May I speak with him, please?"

Me: "Mmmmm mmm."

Telemarketer: "Could you please bring Mr. Serchia to the phone?"

Me: "Mmmmm mmm." I place the receiver down for about 30 seconds, then pick it up again.

Me: "Mmmmm?"

Telemarketer: "YOU again? I told you I want to speak with Mr. Serchia."


Telemarketer (struggling to suppress a sigh of exasperation): "Mr. Serchia, this is Sheila calling from the Los Angeles Improvement Center, and–"

Me: "Mmm-mmm-MMM-mmm-mmm-MMM?!"

Telemarketer: "Uh, the Los Angeles Improvement Center. Did you know that you can save money on your auto insurance just by–"

Me: "Mmm MMM? Mmmm mmm mmmm. MMM mmm mmm, mmm. ¿Mmmm mñm mmmm? "

Telemarketer (after a long pause): "Mr. Serchia, perhaps I called you at a bad time–"

Me: "MMM mmm!" (Click.)

I'm so glad that I never bothered to get my name and number on the Do Not Call Registry. I would never have had this golden opportunity to drive the Sheilas of the world nuts.

Got telemarketers? Send 'em my way!

Monday, May 4, 2009

Food for thought

Twelve cases of Isosource 1.5 Cal were stacked by my front door when I came home from work on Friday night.

Isosource is the vanilla-flavored liquid formula that I dump down my G-tube because my swollen tongue doesn't allow me to get food down my throat. I go through eight or nine cans of Isosource each day –that's between 3,000 and 3,375 calories– and 12 cases are enough for a month of tube feedings.

The last time that I got a shipment of Isosource –around the time that my cancer treatments were wrapping up– I told a friend that maybe I wouldn't need to re-order. With luck, I told him, my tongue would return to normal over the next few weeks and I would be able to start eating through my mouth again.

Well, several weeks have passed and I'm still waiting for my tongue to shrink enough to allow me to eat through the mouth and talk.

I carried the cases of Isosource into my apartment and stacked them in the kitchen. As the pile of Isosource got higher, my spirits sank lower. I really want to see the light at the end of the tunnel in this cancer ordeal, but after all these weeks of treatment and recovery, that tunnel is only getting longer.

An email sent over the weekend by a friend who works overseas was enough to get me to quit my belly-achin'.

My friend works for the World Food Programme, a United Nations agency that is the world's largest humanitarian organization. Last Monday, WFP held an event in Los Angeles, and my friend wanted to let me know how it turned out.

He sent a link to the World Food Programme's website and I spent time on Sunday reading about the group's work to fight hunger and raise awareness. I came upon some startling facts. Here are just a few:

  • Twenty-five thousand adults and children die every day from hunger and related causes.

  • Nine-hundred and sixty-three million people do not have enough to eat. That's a sum that exceeds than the populations of United States, Canada and the European Union.

  • The number of undernourished people in the world rose by 75 million in 2007 and 40 million in 2008. Higher food prices are largely the reason for the increase.

  • In developing countries alone, 907 million people are hungry.

  • Every six seconds a child dies because of hunger and related causes.

  • In a 1970 UN Resolution, most industrialized nations committed themselves to tackling global poverty by spending 0.7 percent of their national incomes on international aid by 1975. Nearly 40 years later, only Norway, Sweden, Luxembourg, the Netherlands and Denmark regularly meet this target.

Then I left the World Food Programme's website and started to look at statistics on hunger that were closer to home.

  • According to the UCLA Center for Health Policy Research, 214,000 people in Los Angeles County suffer from hunger, and 561,000 people are at risk for hunger.

  • The Los Angeles Regional Food Bank reports that one in eight Los Angeles County residents are at risk for hunger.

  • The California Food Policy Advocates reports that over 5 million people in California are hungry or live in fear of hunger.

Now I'm looking at that stack of cases of Isosource in my kitchen in a different light.

I get all of the food that I need delivered to my doorstep by my HMO. Sure, the food enters my stomach by a different route than it used to, but it gets there just as well. I don't know how my cancer odyssey is going to play out, but I do know this: I'm not going to go hungry.

I had a nourishing breakfast this morning and I hope you did, too. Not enough people in the world can say the same.

Friday, May 1, 2009

Every blogger loves a parade

When I started Thinking Positive last year, I didn't realize what a huge responsibility maintaining a blog can be.

As of this morning, TP has acquired 23 "followers": readers who have taken the time to not only publicly declare their association with this blog but, in many cases, add photos of themselves in living color to this page.

I'm still trying to figure out how a schmo like me deserves to have a single follower, let alone 23.

Swine flu fears notwithstanding, 23 followers is nothing to sneeze at.

True, my gang of 23 trails the number of Ashton Kutcher's followers on Twitter by 999,977, but it's more than three times the number of dwarves who clung to Snow White's hemline. Twenty-three followers is a smaller posse than the number of bunnies hovering around Hugh Hefner on an average day in the Playboy Mansion, but it's bigger than the size of the Manson Family. Britney Spears' fans may be able to pack Staples Center on successive nights, but my 23 followers could fill just about any Starbucks, and that should count for something.

By the way, I am eager for follower No. 24 to arrive. The number 23 reminds me of a bad Jim Carrey movie.

With so many of people following me, I'm terrified I'm going to get all of you lost.

I'm a guy who, after hundreds of visits to Disneyland, still has trouble getting from Critter Country to Tomorrowland without referring to a map or asking for directions. Followers, if I ever announce a field trip for the people who read this blog, bring a change of underwear.

But having a Band of Buddies who call themselves followers is rush-inducing. I love seeing your mugs every morning when I sit down to write the day's post. You are a fabulous mix of 23 people, animals, tattoos and a cartoon rendering of a beer bottle.

To those of you who are represented by gray silhouettes: you give me goose pimples, too.

And to the mysterious follower who identifies himself or herself with a 28-character string of consonants, vowels and numerals: you fuel my fantasies.

Are you one of my old English teachers monitoring my grammar and spelling skills? Are you the Bad Boy I've been searching for all of my life? Are you a libel lawyer? Are you the IRS? Are you the bureaucrat I needled in this blog last winter? Are you a visitor from another planet? Are you Prince? That's it! You are Prince, aren't you?

It's a hoot knowing that even utter strangers can become one of my followers. Sure, Gary Hart regrets inviting news reporters to follow him back in 1987, but I'm not likely to be photographed anytime soon cradling a 29-year-old model in my lap.

But, followers, don't abandon me if a photo of me pouring tequila down my G-tube should surface after Cinco de Mayo.