Tube talk

It feels like my G-tube and I just met, but we're coming up on our four-month anniversary already.

My gastric-feeding tube –a foot-long rubber hose that leads to my stomach through an incision in my abdomen– snaked into my life on December 5, after eating through my mouth became impossible and my weight started dropping.

Three times a day I pour a few cans of a high-calorie formula called Isosource down the tube, using a plastic syringe. Aside from liquid formulations of my HIV meds, this stuff is the only thing I eat.

Isosource is not exactly something you would have seen featured on The Galloping Gourmet.

Pay no mind to the Nestlé logo on the Isosource label: Everything about the product is bland: its beige hue, the packaging, its smell and the taste.

Well, to be honest, I'm only guessing about the taste. Isosource goes straight from the can into my belly, so I have no idea what the goop tastes like. And I can't get my friends to describe the taste to me; they refuse to touch the stuff when I offer it to them.

And I won't know how Isosource tastes unless my cancer treatments succeed and I can return to eating through the mouth.

I know that I blog about my G-tube often, but in real life, I'm pretty private about it.

I keep the tube coiled up beneath my shirt in between meals. When feeding time comes around, I grab a few cans of Isosource, a syringe, a bottle of Arrowhead, some paper towels and a newspaper, and feed myself behind a closed door.

In the entire time that I've had the G-tube, I haven't met anyone else who's in the same situation.

Well, that's all about to change.

On Monday night, after Googling the term "G-tube," I stumbled on a website for the Oley Foundation.

Based in Albany, N.Y., the Oley Foundation is an organization dedicated to providing information and support for people dependent upon parenteral nutrition (HPN), where solutions are fed directly into the bloodstream, and folks like me who are dependent on enteral nutrition, where formula goes directly into the stomach via a tube.

The group was named after Clarence "Oley" Oldenburg, a patient of the doctor who founded the group in 1983. Oldenburg has been feeding himself through HPN since 1976.

Nineteen-seventy-six?! Man, that is the year that I graduated from high school! And I've been moaning because I've been on a G-tube since last December.

You can bet that I'm going to be spending a lot of time on the Oley Foundation's website. It's stuffed to the gills with resources for people just like me. I've already created a profile for the patient forum on the site, and can begin to interact with thousands of people across the U.S.

Last night I saw posts on the forum about how to protect yourself against G-tube infections, changing your G-tube regularly, how to assure TSA agents that your G-tube is not some kind of elaborate suicide bomb, and much more.

I'm keeping my fingers crossed that I'll be able to shed my G-tube soon. But in the meantime, or if I learn that my G-tube is here to stay, it's great to know that the Oley Foundation is there.

I'm toasting them with a can of Isosource this morning. Cheers!

On the road to recovery

A friend asked me on Sunday if I went to Prince's concert on Saturday night in order to celebrate the end of my cancer treatments.

I'd love to celebrate pulling myself through six weeks of chemotherapy and radiation treatments, and shaking my booty to "Delirious" would have been one way to do so. But it's too soon to declare victory.

Cancer is a wily adversary. Weeks –perhaps months– may pass before I know which one of us will come out ahead in this fight.

There will be a handful of opportunities in the near future for measuring my progress. I'll be seeing both Dr. B1 and Dr. B2 in early April, and I have an additional appointment in Kaiser's oncology department on April 20.

My hope is that each of these appointments will yield at least a morsel of good news about my chances of recovery.

I bet some of you have a better idea of what I might expect than I do. You may know someone who has been down this road, or maybe you have firsthand experience with cancer.

This is my first close-up encounter with this disease. I'm learning this stuff as I go along.

I'm glad that I started this blog, even before I knew it was cancer that I was up against. Writing is therapeutic for me, but I don't want to waste anyone's time. Now that I'm not having daily appointments at Kaiser, my cancer news is already running thin.

So if I don't post daily, don't think that I've lost interest in this blog. I just don't want to get a reputation for being the author of a blog that makes its readers' eyes glaze over.

By the way, April 1 is just around the corner. If by some miracle, I wake up on that date and discover that all of my cancer symptoms have vanished, I'm telling you now that I'm gonna sit on that news for a day.

Like I said, cancer is a wily adversary. Don't want to have to backpedal on a proclamation of a cure if it turns out that my cancer cells were only pulling an April Fools prank on me.

–––

Inside Edition: "Tork and Squiggy Facing Medical Crises"

Rendezvous with royalty

Steve Martin once dolled himself up with lipstick and rouge for the cover of an album titled "Comedy is not Pretty."

Cancer ain't cute, either, and not all of the makeup in Estée Lauder's warehouses would be able to make me remotely as pretty as Steve Martin was on that album cover.

I'm several days removed from my final radiation treatments and I'm still hoping for my pre-cancer face to come back. Not that I was ever such a handsome dog to begin with, but this mug has definitely seen better days.

I've got at least three skin tones goin' on my neck and face. There's my natural Italian hue from roughly the nose up, and then below my schnozz there's a brownish splotchy tone where my face has absorbed nearly seven weeks of radiation. Finally, there are patches of garish red where my nails have clawed at the flaky skin.

My beard is a look that might be endearing on someone going through puberty but on a 51-year-old man, well, let's just say I'm excluded from the ranks of the metrosexuals until I figure out what to do with my irregular whisker growth.

And then there's a haggard, weary expression on my face that just screams for pity, enhanced by my protruding, swollen tongue and the drool factor that I just can't seem to shake.

I bet I could rake in a mint shaking a tin cup at Cahuenga and Barham and drive out the current panhandlers I see there every day.

Instead, a buddy is picking me up in a few minutes and we're headed to a Prince concert.

My ticket to the Purple One's performance tonight at the Nokia Theatre is in Row E of the orchestra: a guitar pic's toss from Prince himself. There will be about 6,300 other fans in attendance at the show but something tells me that I'm going to be the homeliest guy in my section, if not the entire house.

I've been to the Nokia Theatre enough times to know that there are large video screens above the stage to make the artist easier to see for the folks in the upper rows. But it's not only the performance that gets caught on video and thrown up on the screen in shockingly high-definition detail. The audience, too, gets its share of glory on the screen.

With my luck, I'll be seated between two gorgeous babes who will capture the attention of Prince's video crew, and my mug will get splashed on the screens, too.

Probably in mid-drool.

Don't tell me that no one pays attention to these screens during a high-energy show like the one that Prince delivers. In 1994, the Rolling Stones played the Rose Bowl and the most frequent comment I hear about that show these days is how O.J. Simpson's attorney Robert Shapiro was shown in the audience shots on the Stones' video screen.

I don't even know why I am blogging about this now. My friend is already en route to pick me up. I gotta get to the bathroom mirror and try to sexy myself up the best that I can.

My cancer face ain't fit for being in the presence of royalty, but it's the only face I got, and I have no intention of eating the 98 bucks I paid to Prince and Ticketmaster for my ticket for the show. So what am I gonna do?

Mr. Prince, I apologize in advance for any distractions my face will cause during tonight's performance.

Say, who was that masked man?

Anatole Broyard, a writer who died of prostate cancer in 1990, said in his memoir that "every seriously ill person needs to develop a style for his illness."

I came upon this quote in a piece by Dana Jennings in Thursday's New York Times. The author, a prostate cancer patient, discovered his style by getting regular buzz cuts to help him cope with cancer.

"I'm an optimist," Jennings writes, "but not a day goes by in which I don't wonder whether I'm going to die before I ever imagined. The buzz cut helps me scowl, glower and say 'No!' to that thought."

I'm more than two months into the cancer phase of my life, and it's about time that I developed a style of my own.

And I think I've found one.

Before going into my 33rd and final radiation treatment on Wednesday, I opened my note pad and jotted down a note to hand to the radiation techs.

"Do you think I could take my ThermaSplint mask home?" I wrote.

The ThermaSplint mask was molded to the contours of my face in late January, shortly before my radiation therapy began. At each session of radiation, my head was clamped inside the mask as the radiation rays targeted my tongue, neck and the sides of my face.


Take a look at it. It's pretty creepy looking, don't you think?

I've seen other patients' ThermaSplint masks in the trash, so I knew that Kaiser would probably toss my mask once my treatments concluded. I planned to show the note to one of the techs after Wednesday's session was over, before they had a chance to pitch it in the garbage.

But before I even got a chance, the techs asked me if I wanted to take the mask home!

I think I'm going to make my ThermaSplint mask the foundation of my cancer style.

You see, between my swollen tongue, my haphazard beard, reddish, flaky skin, and the constant flow of drool that seeps from my mouth, my appearance garners a lot of attention these days.

By wearing the ThermaSplint mask when I'm out and about, I can conceal those manifestations of my disease and establish a cancer style that would be completely my own.

I'd have to doff the mask while driving –the eye slits are too narrow– and I'd probably need to be careful about exposing it to sunlight (it could melt and make a mess of my hair). I wouldn't wear it while sleeping, and I'd take if off before walking into any bank or a 7-11 on Halloween.

But most of life's other major activities could be done while wearing my ThermaSplint mask. Even eating with my head encased in the mask would not be a problem, not as long as I feed myself with a G-tube.

I bet I can quickly establish myself as one of L.A.'s men of mystery, maybe even land in a few of the local gossip blogs. I could even hang out in Burbank around NBC's studios, catch Jay Leno's attention and maybe snatch an invitation to come on his show.

How cool that would be!

Sure beats hearing someone idling beside me at an intersection yell, "Dude, that is so gross! Get a drool cup, willya?"


With a Buzz Cut, I Can Take on Anything by Dana Jennings

Graduation Day

Radiation treatment session No. 33 finally arrived on Wednesday, and not a moment too soon.

My body has really begun to show signs of wear. Loss of hair on my scalp was followed by irregular growth of my beard and then the skin on my neck and face became flaky, reddened and itchy.

Trumping all of these side effects has been steadily rising fatigue. Fatigue was worst on the last few days of each week throughout my treatments, but really packed a wallop during the past 10 days.

Respiratory discomfort settled in around the middle of my treatments, and my tongue has become even more inflamed.

I'm told that these side effects are going to hang around for a while, but now that daily exposure to radiation is over, I hope that the symptoms will gradually ease.

I need a break.

A few things made radiation easier to bear than it otherwise would have been.

• My stuffed toy frog
  
  My friend Shirley brought the frog to me when I was recovering in the hospital in mid-January. I anointed it my cancer mascot.
  
  
  I held my frog on my stomach at each and every radiation session except the first one, and I dressed it up with a Rolling Stones tongue, a Mickey Mouse pin, a souvenir from the finish line of the Susan G. Komen Race for the Cure and the prayer card from my mom's funeral in 2007.
  
  Someday, maybe my tongue's performance will match a frog's in agility and speed. I'll settle for much less.
  
  Now my frog will stay with me at home.
  
  
  
  
  
• Music
  
  Once I got permission to play my own CDs during the treatment sessions, I felt more in control of what happened in the radiation room. The radiation rays that targeted my head were controlled by an unseen lab tech, but the sound waves that traveled from the CD player to my ears were directed by me.
  
  I started out by playing a CD I grabbed at random from a stack at the office in the middle of the second week of treatment. After that, I invested a lot of thought into what I plucked from my collection to bring to treatment each day.
  
  My playlist, in alphabetical order:
  
  The Beach Boys ("Pet Sounds"), Belle and Sebastian ("The Life Pursuit"), David Bowie ("Low"), Johnny Cash ("Johnny Cash at Folsom Prison"), Elvis Costello and the Attractions ("The Very Best of Elvis Costello and the Attractions"), Bob Dylan (the middle disc of a career-spanning compilation), Crystal Gayle and Tom Waits ("One from the Heart" soundtrack), Graham Central Station ("Graham Central Station"), Grateful Dead ("American Beauty"), Led Zeppelin ("Physical Graffiti"), Love ("Forever Changes"), Magnetic Fields ("69 Love Songs, Vol. 1"), Paul McCartney & Wings ("Red Rose Speedway"), Joni Mitchell ("Hejira"), Mott the Hoople ("Greatest Hits"), Pet Shop Boys ("Art"), Radiohead ("OK Computer), the Rolling Stones ("Exile on Main Street"), Sparks ("Number One in Heaven"), Dusty Springfield ("Dusty in Memphis"), Talking Heads ("Sand in the Vaseline, Vol. 1"), the Temptations ("My Girl: The Very Best of the Temptations"), Stevie Wonder ("Original Musiquarium, Vol. 1"), Stew ("Guest Host") and Wilco ("A Ghost is Born").
  
  Some of these are my favorite albums and some of these are albums that I link to someone meaningful in my life. All of them are albums I wish I could sing along to, if I could.
  
  When Wednesday's radiation session was over, I was imagining that I was singing along to the Beach Boys' "Sloop John B," with its lyric "I feel so broke up, I wanna go home."
  
  
  
• Friends and family
  
  The third thing that pulled me through radiation treatment was all of the people who are supporting me in this struggle.
  
  That includes people who have done things for me; people who have encouraged me to give this fight all I've got; other people who have faced cancer and other life-threatening diseases; and everyone who reads this blog. You all helped me through.
  

At the end of the session on Wednesday, the two lab techs on duty surprised me with the certificate you see at the top of today's blog entry.

One of them, a young man named José, handed the diploma to me, shook my hand and wished me well.

I felt like I should have been honoring them, rather than the other way around. They were the ones who did all of the heavy lifting over my weeks in the Radiation Oncology Department. All I did was show up on time, and lay on the treatment bed like a schlub.

I won't be going back to the Radiation Oncology Department until April 20. Between now and then, I'll be seeing both Dr. B1 and Dr. B2.

If you've been following this blog, I hope you'll stick with me a little longer.

I can't guarantee a happy ending to this story, but I am sure going to try.

A mute point

Q. What do you call someone whose tongue cancer prevents him from speaking?

A. A guy who simply has to find an alternative means of communication.

Q. What do you call someone with tongue cancer who pulls a load of laundry out of the washing machine and discovers he left his cell phone in his jeans pocket?

A. A guy with a serious communications crisis on his hands!


OK, so I left my cell phone in my jeans on laundry day.

So be my guest: Text "Dude, U R a doofus!" to 213 446-7285. I deserve heaps of public humiliation for pulling a boner like that, up to and including President Obama making fun of me on Jay Leno's show.

But in my defense, I can't be the only guy on the planet with a Downey fresh but completely inoperative cell phone.

I bet that thousands of people have accidentally laundered their cell phone. I bet that even more people have dropped their cell phone into a basin of dishwater, into a garbage disposal, or jumped into a swimming pool with a cell phone in their trunks.

Some people even admit to dropping their cell phone in the toilet. Don't take my word for it; just Google "cell phone" and "toilet," like I did last night.

You'll get 2,800,000 hits!

At least I had enough smarts not to try to repair the phone by wrapping a Bounce sheet around it and putting it into the dryer. Instead, I removed the battery and the SIM card, wiped them down with a paper towel, and left everything on the kitchen counter overnight.

Maybe that will be enough to fix it.

In the meantime, being without a cell phone is not a simple inconvenience for me. It's a bona fide catastrophe.

Lacking the ability to speak, I haven't placed a phone call on my cell phone for months, nor have I picked up an incoming call before allowing it to go to voice mail.

But text messages are a whole other story.

Text messages are to me what smoke signals were to Indians. In the four days that I was hospitalized in January, I must have sent 600 text messages, giving friends and family members updates on my condition.

My cell phone has allowed me to do what my tongue won't: communicate with the outside world. Without the ability to send and receive text messages, I may as well seal myself inside a refrigerator box and wait for my tongue to heal.

It's been less than a day since I've opened my phone's In Box or clicked Send, and already I'm feeling like Tom Hanks in that movie where he washed up on a deserted island with only a soccer ball to call a friend.

What if someone is trying to text me this very minute? I got a text message from Obama after he picked Joe Biden as his running mate. What if Michelle is texting me now to announce the next vegetable she will plant in the White House garden?

But I have an advantage that the average schmo who drenches his cell phone may lack.

I rent a machine from Kaiser that extracts secretions from my trach.

This gadget operates based on the principle of suction and it's about as loud as a leaf blower. It took weeks for me to get over my fear that the suction tool was going to suck all of my internal organs up my windpipe when I stuck it in my trach or in my mouth.

So this morning I used the suction machine on my cell phone.

It may not do the trick, and probably is a violation of the rental agreement I signed when I took possession of the suction machine, but a crisis like this calls for desperate measures.

My cell phone is like a digital tongue to me –an organ that even cancer can't render mute.

If only there were a way I could keep a monkey like me from messing it up.

Bloodthirsty

No breaking news to report today, folks. At the last minute on Monday, the general overseeing the Carboplatin assault on my cancer called off the third and final round of chemotherapy.

Turns out that I wasn't fit for cancer combat on Monday. After I arrived at Kaiser eager for my third session of Carboplatin, the nurse took my vitals and found that my blood pressure was abnormally low. Before my chemotherapy could begin, she said, I would need to see Dr. Buchschacher.

Dr. B2 –that's what I call him to avoid mixing him up with Dr. Birusingh, the other significant doc on my cancer team– found me on the same Barcalounger where I began chemotherapy treatment in early February.

After pulling up a chair, Dr. B2 told me that not only was he concerned about my blood pressure, my latest labs showed that my white blood cell counts and platelets were also low, and I was anemic to boot.

Dr. B2's news was an unexpected blow, but I took comfort in the fact that I wasn’t too anemic to instantly recognize the word as an anagram for “cinema.”

So instead of spending a morning hooked up to an IV delivering carboplatin to fight my cancer, I spent most of the rest of the day in Kaiser's infusion center a few blocks down Sunset.

The last time I was in Kaiser's infusion center seems like an entirely different century to me.

It was early December. Eating had become impossible for me, my weight was dropping and I spent a few days receiving nutrients through an IV.

I was wasting away, but I was still 100-percent human then. My G-tube surgery was still a few days away; my tracheotomy was a month and a half off; and as far as I knew at the time, a Foley was the member of a film crew who creates sound effects.

In Monday’s visit to the infusion center, I was fed two units of blood, one drip at a time. Each unit of blood required two hours to be delivered, and they also gave me Benadryl and liquid Tylenol. I spent a good five hours in the infusion center.

Five hours is equivalent to two weeks of episodes of "Dark Shadows." Just imagine how much blood Jonathan Frid could consume in the time I sat in a chair watching two plastic bags slowly being sucked dry.

Kaiser's infusion center may be a top-notch operation, but you have to admire the efficiency of vampires.

I got sprung just in time to hop across the street for my radiation treatment.

I brought Paul McCartney and Wings' "Red Rose Speedway" to put in the CD player for my treatment on Monday. Before climbing onto the treatment bed, I cued up the CD to track 9: an 11-minute medley.

No one holds McCartney’s "Red Rose Speedway" in high esteem these days, and most dismissed it as Macca-roni when it was released in 1973. But I think it is one of McCartney's sweetest collections –as good as anything his former band mates were putting out at the time– and that medley is one of my guilty pleasures.

I eavesdropped on the two radiation techs as they locked me into the ThermaSplint mask, and the music played.

One tech said to the other, "This sounds like that guy, you know, what's-his-name."

"John Lennon?" the other tech asked.

"Yeah," the first tech replied.

Arrrgh, I thought as I listened to the exchange, digging my nails into my frog's neck.

Hearing people confuse Beatles makes my blood boil. I have no doubt that the juice I was fed in the infusion center was the real deal.

Hit the road, Jack

Dear Squamous Cell Carcinoma:

Pack your bags yet?

I don't think I am legally obligated to serve you another notice to vacate, but I feel it's only fair to give you a final warning.

In a few hours, I'm going to settle into a Barcalounger, kick off my shoes, and get hooked up to an IV at Kaiser for another round of Carboplatin chemotherapy.

I'm looking forward to a few hours of reading, napping, and watching a bit of television.

On the other hand, I can't imagine what it must be like for you to be in my body when a chemotherapy attack is under way. The only thing I can compare it to is when exterminators tent a building prior to filling it with poison to get rid of termites.

I mean, it's gotta suck to be a cancer cell when nasty chemotherapy is coursing through somebody's veins.

I'm sorry I've been such a lousy host, Mr. Carcinoma –may I call you Squamous? But I also don't remember inviting you and your fellow cancer cells to take up residence in my body. And in my tongue, of all places.

I could list all of the ways that you've caused misery for me over the past several months, Squammy, but I don't want to dwell on the past. I'm not coming after you seeking punitive damages for the wreck you've made of my body; I just want you to get the hell out of Dodge so I can begin to heal.

I probably shouldn't tip my hand to you, but today's round of chemotherapy is the last one that is scheduled.

And then my radiation treatments will wind down, too. Later today, I'll be returning to the Radiation Oncology Center at Kaiser for my 31st session of radiation. Another session will take place on Tuesday, and then Wednesday will wrap up the radiation phase of my treatment plan.

So make things easy on yourself and the other cancer cells who are squatting in my tongue, Squammy. Just give up, pal.

I hope you won't see this letter as another Notice to Quit. You've had plenty of warning. You and I were never meant to be co-habitants. Let's call the whole thing off.

In a word, Squammy: Scram.

Now, if you'll excuse me, I gotta shower, get dressed and hustle down to Kaiser so this blitzkrieg can resume.

It's a splendid morning for an invasion.

Let the recovery campaign begin!

The Obama administration –who knows a thing or two about marketing– recently unveiled a logo that represents the $787 billion stimulus package signed into law last month.



The logo, cast in the familiar shape of the Obama logo from the presidential campaign, shows a cluster of white stars to represent patriotism, a set of gears to represent industry, and a leaf to represent –I dunno, the new economic leaf that the administration is turning over?

This seal, President Obama said, is intended to remind us that the government "is doing its part to put the economy back on the road to recovery."

Well, with the end of radiation treatments and chemotherapy, I'm also on the road to recovery. I may very well find myself zipping alongside the presidential motorcade as it escorts the U.S. economy into recovery.

I hope that the Obama team doesn't mind that I've adapted his recovery logo for my own personal campaign. I've kept the white stars out of loyalty to the president, but replaced the gears and the leaf with symbols connected with my own campaign to rescue my tongue and reclaim my tummy.

I hope that the treatments that are now winding down will succeed in being the right kind of stimulus package I need to beat cancer.

My campaign isn't costing you a penny, and no A.I.G. bigwigs will walk away with any bonuses. May I can count on your support?

Relief on the way

Thirty down, three to go!

My sessions of radiation treatment in the Radiation and Oncology Center at Kaiser haven't worn me down to the point of crying "Uncle!" But they're getting close.

Whoever put the "treat" in the word "treatment" was a real wise guy.

At the end of each session, I just want to sleep. And I probably would, if there wasn't another cancer patient waiting outside the room to use the bed for his own treatment.

The cancer literature I've read say that some of the side effects of radiation treatment will go away after treatment ends, others may continue for a long time, and some will never go away.

I'm a bit irritated by that word "never." If it means that some of these side effects will follow me to the grave and hunker down for eternity, well, that's not the kind of afterlife I learned about in Sunday School.

At least I know that I'm not being treated with a placebo.

The newest side effect is dry, flaky skin, mainly around my neck. The doctor in the radiation unit told me that my case is pretty mild but gave me some packets of topical cream anyhow, and I picked up a jar of a healing ointment in the Kaiser pharmacy last night.

The next step in my treatment plan is my final session of chemotherapy on Monday morning. Then, at 5 o'clock on Monday, I'll resume radiation treatments followed by another session on Tuesday.

On Wednesday, instead of handing over my frog to the radiation tech to store with my ThermaSplint mask until my next session, I'll bring the frog home.

Together, we'll wait to see if these treatments succeed.

I don't expect my tongue to move with the agility or speed of a frog's, but if I can eat and talk with my tongue again, and avoid a recurrence of its swelling, I'll be thrilled.

And if the Rolling Stones' lawyers never find out that I'm using the band's logo in the heading for this blog, well, I'll consider myself one very fortunate fellow.

Pushin' too hard

I ran into a co-worker who hadn't seen me for a while on Thursday, and she said "Paul, I don't even recognize you."

I wasn't able to respond to her. But even if I had a voice I would not have known what to say.

I don't look the way I looked even a few months ago. It's been only two months and a few days since I learned that I have cancer, but this disease has changed me and is changing me still.

Now that I'm in the home stretch for my radiation treatments and chemotherapy, I hope that I won't get even more difficult for my co-worker to recognize. I have a radiation session today, and three more on Monday, Tuesday and Wednesday of next week. My third and final chemo session will be on Monday.

Even as these sessions wind down, I know that the outcome of this odyssey is far from clear.

The New York Times recently published a piece titled "Time is a Trickster When Cancer Runs the Clock," written by a 50-year-old man living with prostate cancer.

Like me, this writer was blindsided by his cancer diagnosis and also like me, he has been reluctant to yield ground to this disease. But almost a year of living with cancer has given this man perspective that I lack.

"[Cancer] doesn't know from deadlines and Blackberries, from Twittering and overnight delivery," he writes. "Cancer is analog in a digital world. If you have a Type A personality, you will need to adjust to Type C – for cancer. Each phase of the disease –diagnosis, surgery, radiation and other treatment– carries its own distinct sense of stepping outside traditional time, its own bitter flavor of dislocation."

I like to focus on the first three letters of the word. It's can-cer, not can't-cer.

Yeah, I have cancer, but I can continue to work, I can take care of myself, I can use my brain as I wait for the rest of my body to snap back to normal.

Last night, as winter shifted into spring, I prepared about 50 letters asking friends and family members to support me in AIDS/LifeCycle 8. Part of me –the can-cer part– believes that in 10 weeks I'll be ready to ride my bicycle 561 miles from San Francisco to Los Angeles.

Going from not riding my bike at all to riding up to 107 miles for seven consecutive days in such a short period of time would be a huge leap for me. That match I may have little choice but to concede to can't-cer.

I'll let the prostate cancer patient writing in The New York Times have the last word today:

"[H]ealing, too, comes in its own time," he writes. "No matter how hard you push –and pushing isn't necessarily bad– you have to understand that cancer and its treatment will push back."


–––

Time Is a Trickster When Cancer Runs the Clock by Dana Jennings

Strings attached

My voice went A.W.O.L. more than three months ago.

Up to now, I've been able to communicate by scribbling notes, making gestures with my thumb, and tossing in a raised eyebrow now and then for emphasis. But now I'm ready to advance to the next level.

In December, a mute patient being treated at Boston University miraculously regained the ability to speak after surgeons planted electrodes in his brain. Just by thinking about vowels, he was able to say them with his vocal cords.

Pretty sure my HMO won't cover that procedure, so I'm opting for a do-it-yourself home remedy.

It's not new technology –it's been around since the end of the 19th century– but as far as I know it's never been applied in a way to benefit someone like me.

You've seen toy dolls with voice boxes that speak when you pull their string?

Well, what's stopping me from implanting some of those toy dolls' voices into me?

I already own a talking Pee-wee Herman whose voice box I could easily tuck beneath my shirt with the string hanging free, just like my rubber G-tube. Gimme a credit card and some time on eBay and I could snap up a talking Bugs Bunny, Woody, Buzz Lightyear and the Alien from "Toy Story," Elvis Presley, the Rev. Pat Robertson, Mrs. Beasley from TV's "Family Affair," Urkel from "Family Matters," Bill Clinton and Ann Coulter.

I could stuff their voice boxes all under my shirt and whenever I wanted to say something aloud, I would reach for the one of the strings.

I wouldn't always make sense, but at least I would be back in the conversational flow. And the hidden voice boxes would fill out my frame.

Let's imagine I rolled through a stop sign and got pulled over by a cop. Here's how the conversation with the cop might go, if I had access to all of the voices I listed above. (Each doll quote is from the actual toy.)

Officer: "May I see your drivers license and registration, sir?"

Me (in Woody voice): "Howdy, partner!!"

Officer: "Um, good afternoon. Just hand over your drivers li–"

Me (Woody): "You're my favorite deputy!"

Officer: "Huh? Have we met before, sir?"

Me (in Mrs. Beasley voice): "I do think that you're the nicest little friend I ever had."

Officer: "Sir, I strongly advise you to simply hand over your drivers license and registration."

Me (in Urkel voice): "No sweat, my pet!"

Officer: "Sir, are you aware that you went through a stop sign and failed to yield for a pedestrian?"

Me (in Bill Clinton voice): "I did not have sexual relations with that woman, Miss Lewinsky."

Officer: "Sir? Who said anything about sexual relations? And the name is Officer Lopez."

Me (in Mrs. Beasley voice): "Gracious me, you're getting to be such a big girl!"

Officer: "Sir. Please step out of the vehicle."

Me (as Alien): "Oooooh. The Claw is my master."

Officer: "Sir, what is your name?"

Me (in Smurf voice): "Hi! My name is Smurfette!"

Officer: "Mr. Smurfette, are you intoxicated?"

Me (in Bill Clinton voice): "I said I have never broken the drug laws of my country. And that is the absolute truth."

Officer: "May I remind you that you are speaking with an officer of the law . . ."

Me (in Pee-wee Herman voice): "I know you are but what am I? Heh heh!"

Officer: ". . . and I have the authority to place you in custody."

Me (in Pat Robertson voice): "I don't have to be nice to the spirit of the Antichrist." (in Elvis Presley voice): "I have always admired sideburns." (in Smurf voice): Smurf me a kiss!"

Officer: "Your behavior compels me to take extraordinary measures."

Me (in Buzz Lightyear voice): "This is an intergalactic emergency!"

Officer: "Please face the wall and place both hands behind your back."

Me (in Mrs. Beasley voice): "Speak a little louder, so Mrs. Beasley can hear you."

Officer: "I said, PLACE BOTH HANDS BEHIND–"

Me (in Bugs Bunny voice): "Now, now, take it easy."

Officer: "You have the right to remain silent . . ."

Me (in Urkel voice): "Got any cheese?"

I'd be speechless at that point. Pulling strings is extremely difficult while wearing handcuffs.

Two more members of the Cancer Club

I get tired writing about myself every day. And if I feel that way sometimes, jeez, I can only imagine what it must be like for you.

I'm not the only guy in the world living with tongue cancer. Let's shift to a less Paul-centric mode and catch up with a few other people who are in the same boat as I am.

Peter Tork


Early this month, former Monkee Peter Tork was hospitalized in New York for surgery related to Adenoid Cystic Carcinoma, a rare form of head and next cancer.

As of this morning, I can legitimately claim Peter as a friend. He confirmed my friendship request on Facebook.

Here's an update on Peter's condition from the former Monkee himself, posted on his website last weekend:

"My post-op recovery is coming along about as well as could be hoped for. I could wish for one of those metabolisms I see on the sci-fi movies, where wounds heal up as we watch. Short of that, however, I am doing very well. I have an appointment with my surgeon next week, and I expect to hear the bad news about the course of radiation necessary. I am harboring some faint hope that it will be milder than what they were telling me about radiation plan I'd have faced if it was the primary treatment for the cancer. I'll be faced with the reality soon enough.

"Meantime, I couldn't be more heartened by your response. So many of the people I have met are rallying to my side, and I'm really, really, amazed and almost overwhelmed with gratitude."

If you're on Facebook, add Peter as a friend and send him good wishes when you do. Or write to Peter at:

Peter Tork
524 San Anselmo Ave, No. 102
San Anselmo, CA 94960

–––

Grant Achatz


No fewer than three Thinking Positive readers told me about Chef Grant Achatz, who was featured last week on The Oprah Winfrey Show.

Chef Achatz has achieved fame and respect in the culinary world, including the Best Restaurant title from Gourmet magazine in 2007. Here's an excerpt of his story, from oprah.com:

"One day, [Achatz] noticed a very small, white spot on the left side of his tongue. Grant ignored the spot for months before asking his dentist about it. He says she thought it was probably related to stress and was nothing to worry about. Grant went to get a second opinion from a general practitioner, who told him the same thing. Eventually, the pain became so intense that eating became difficult, and Grant says he lost 20 pounds.

"When Grant finally went to see an oral surgeon, they took a biopsy of the spot. The results came back, and the prognosis was grim—Stage 4 cancer.

"The first doctor recommended the removal of the middle of Grant's tongue, a radical neck dissection and removal of part of his jaw. Grant says this treatment was too harsh to accept. . . . Grant began searching for other options, but the first four specialists he met all recommended the same thing: immediate surgery on his tongue, neck and jaw to remove the cancer. . . .

"Only after seeking a fifth opinion did Grant find a doctor willing to change the standard medical protocol—to hold off on surgery until after first trying to beat the cancer with chemotherapy and radiation. A year and a half after starting treatment, Grant is cancer-free and still has his tongue."

–––

I know that I promised you a reprieve from my own experiences today, but will you take a rain check? I can't help but tiptoe back into the first person.

Peter Tork, Grant Achatz and I are all at different stations in our journeys with cancer, but in reading about them, I have a better shot at saving my own skin.

On Tuesday night, I stumbled on A Man of Taste, a New Yorker profile of Chef Achatz written by D.T. Max. In the piece, I read that Achatz at one time was drinking 10 cans of Diet Coke a day.

The writer uses that detail to support his claim that Chef Achatz' "lifestyle wasn't exactly healthy." I had been wondering if my Diet Coke consumption –at least a six-pack per day, over a much longer period of time than Achatz drank it– might be a factor in my disease. Now I'm thinking my hunch may be right.

Last May, I probably just flipped past the 8,200-word New Yorker profile of Achatz after I saw the photo of a guy in a chef uniform setting cinnamon on fire. Now I wonder how I might have reacted if I had read the piece. I might have gotten myself checked out for cancer seven months ahead of when I got my diagnosis.

Cancer is a wicked adversary. I don't understand it fully and never will. But every day I manage to learn something new.

Beneath my desk at work, there's a 12-pack of Diet Coke that I haven't been able to drink since I got my G-tube. I should get a Haz-Mat mask, a long pair of tongs and find a place to responsibly bury the stuff.

When I finally beat this disease, it won't be entirely from luck.

–––

Thank you to www.oprah.com and www.petertork.com for content excerpted in today's blog.

Oh, for trach's sake

I was standing over the kitchen sink Monday night, about to rinse out a syringe for a G-tube feeding, when my trach slid out of my throat and nearly got swallowed up by the garbage disposal.

My first reaction was: "Hotch cha cha cha cha! Now I know what I'm gonna write about for tomorrow's blog!"

The second thing that popped into my head was: "Gee, that lil' piece of plastic is helping to keep me alive. Something tells me it shouldn't just drop out of my throat so easily."

Actually, it wasn't the trach itself that landed with one end in the basin and the other sticking in the garbage disposal; it was the trach's inner cannula.

The cannula –not to be confused with cannoli, the pastry that the Mafia capo refuses to leave behind in the car after Rocco whacks Paulie in "The Godfather"– is the slim arc-shaped tube that fits inside the trach, and can be removed for cleaning.

A nurse at Kaiser on Monday offered to replace my trach after she tried cleaning it with a suction machine. She told me that the secretions in the trach were too thick, and that it would be best to start with a fresh one.

My old trach was the same one that was installed during my tracheotomy surgery in January. I had been cleaning the trach's cannula daily –occasionally a few times a day– but didn't realize that I needed to deep-clean the trach, too.

So I was grateful that the nurse could take care of that for me. And the nurse not only replaced it and the cannula, she attached the trach to a new collar and wrapped it around my neck.

After wearing the old collar for two months, the new one gave me an instant sense of freshness and renewal.

Why, I felt like a brand-new dog!

But the new cannula that the nurse slid into my trach didn't match the old one exactly. It didn't lock into place. Sooner or later, it was bound to fall out.

Like every other mini-crisis in my cancer odyssey, this one easily could have been worse.

What if the cannula had fallen without me realizing it?

What if the cannula slipped out in the shower, or fallen into the toilet?

What if I had lost it over a platter of cannolis? I could get whacked for pulling a stunt like that.

Fortunately, the nurse at Kaiser on Monday encouraged me to keep my original trach parts to use as spares. So I lifted the new cannula out of the sink and cleared my kitchen table for a session of D.I.Y. sterilizing.

Everything I needed was on hand. I've piled up enough medical supplies in my apartment over the past few months to outfit a small M*A*S*H unit, with all of the goods delivered to my doorstep by Kaiser's Durable Medical Equipment Department.

Kaiser would cut off my supply if they knew they were delivering their goods to what could pass for Fred Sanford's junkyard. But what they don't know won't get me in hot water, so I make do amid all of the clutter and dust bunnies.

By now, I've cleaned my trach enough times I can do it with a single hand and blindfolded, if necessary.

First, I snap on a pair of disposable nitrile gloves. I have a box of blue and a box of lavender, so I usually put on one of each.

The next step is opening one of my Tracheostomy Care Kits, carefully removing the brush, pipe cleaners, cotton swabs and gauze, and laying them on a sterile surface.

Finally, I unscrew the cap of a 500 ml bottle of .9% Sodium Chloride Irrigation fluid and pour it into the empty tray of the tracheostomy kit. I need a prescription to get my hands on this juice, and at 10 bucks a bottle, this product is about 10 times more expensive than the best bottled water on the market.

Once all of the tools are ready, trach cleaning is all about applying elbow grease.

I didn't want to toss out the brand-new cannula, figuring that the two-second rule applies to kitchen sinks as well as kitchen floors.

All the cannula needs, I thought, was a darn good scrubbin'. After soaking the cannula in the sodium chloride solution, I held the cannula with my purple hand and a small cleaning brush with my blue hand and got to work.

I forced the brush all the way inside the cannula. But when it emerged out the opposite end, the cannula's clear, round plastic cap popped off and spun across my apartment like a microscopic Frisbee!

After 10 minutes on my hands and knees, I finally found the cannula cap in my living room but I felt very queasy about its reliability. Rather than continue to clean it and pop it back into my trach, I figured I was better off just scraping all of the dried gunk off of the original cannula.

When I finished, I turned the cap of the cannula clockwise till I heard that reassuring click.

I looked up at the heavens and gave the Big Fella upstairs a thumb's up.

From now on, I'm gonna clean my trach –the cannula, the collar and the trach itself– with much greater diligence and not leave the dirty work to Kaiser's nursing staff.

And the cannolis? Eh, I'll leave 'em to Don Corleone's capo. I've got enough on my hands as it is.

A walk in the park

My friend Ric broke sad news last week in a comment posted on this blog.

In case you didn't see it, that note from Ric began:

My dear friend Jim Nussbaum, who made and sent you one of his beautiful scarves, died on Saturday morning from pneumonia and lung cancer.

Jim decided to give the scarf to me after Ric told him about what I was going through. The hand-painted scarf is about five feet long and 10 inches wide, and shows a grid of fragments of red ribbons, accented with yellow rings and bursts of blue leaves. On one of the ribbons, Jim signed his name.

Already a thing of beauty, the scarf is even more special now. It represents Jim: someone whose life was cut short by diseases similar to what I'm facing.

So when I got dressed for the 13th Annual Susan G. Komen Race for the Cure on Sunday at the Rose Bowl, it was Jim's scarf that I chose to wear.

It will be a while before I run again, and it could be years before I match the pace I was running before I got sick last fall. So I was content to walk the 5 kilometers of the Komen Race for the Cure. Even at that short distance –slightly more than three miles– the route was the most walking I've done at one time since early December, when I got my G-tube.

That pace is perfect for conversation with other walkers, for all of the good that did for me.

It's not impossible to communicate without a voice, but it's not an ideal situation. It wasn't until I reached the finish line that I reached out to someone.

She was a woman with short gray hair, and she was with several other women. I guessed that she was probably around my age. On the back of her shirt was a message printed with large, bold letters: "23 Years Living with Cancer."

I took my notepad out of my backpack, wrote "Congratulations! I got my diagnosis two months ago" and then waited for an opportunity to approach her.

When I did, she read the note, looked right into my eyes and said, "I'm sorry."

I wrote "tongue cancer" in my note pad.

She reached out to hold my hand. "Twenty-three years for me," she said.

There was so much I wanted to ask her, and a lot of my own story that I wanted to share. I wanted to tell her about the significance of my scarf, and show her Jim Slotnick's book, which I had in my backpack.

But I sensed that the other women in her group wanted to move on, so I just underscored "Congratulations" in my note pad and then added "thank you."

She gave me a thumb's up and said "You can do it."

As I walked away, I thought to myself that it's hard to imagine where I will be with this disease in 23 days, let alone 23 years. But 18 years ago, I learned that I was HIV-positive and if anyone back then had told me I could live this long with AIDS, I would have said that's crazy.

At the finish line, a volunteer handed me a small pin with the Komen Race for the Cure logo with the pink ribbon. I'll add it to my frog's collar today at my radiation therapy session.

After today, only seven more radiation treatments remain.

–––

Thank you again to the Thinking Positive readers who sponsored me in the Komen Race for the Cure. When I got home from the Rose Bowl on Sunday, I saw that my brother Mike gave a generous donation. Together, we raised $285 for this cause.

The Race for the Cure raises funds to provide the underserved and uninsured populations in Los Angeles County with screening, diagnostic tests and treatments for breast cancer.

As soon as I learn how much money was raised at the event, I'll post that information here.

It's not too late to donate to this cause. My Race for the Cure page will remain up through the end of the month.

Click Here to Donate

The March of I'ds

Today is the Ides of March, folks. With apologies with Shakespeare –People magazine's Sexiest Man Alive in 1590– I'm posting my Third Annual "March of I'ds."

• I'd have a rough time coping if I didn't have friends and family members supporting me each step of the way and telling me that I can beat cancer.
  
  
• I'd like to know how the guy who got the first human tongue transplant back in 2003 is doing these days.
  
  
• I'd pay a much higher co-pay than I am charged now at Kaiser for the high quality of care I get there.
  
  
• I'd pitch a brilliant idea for a new theme park to the president and CEO of Disney if I ever got two minutes in an elevator with him.
  
  
• I'd go batty if I couldn't blog to compensate for not having a speaking voice.
  
  
• I'd snap up as many tickets to Michael Jackson's upcoming 50 shows in London as I could afford if the King of Pop would just let me pick the songs he would perform.
  
  
• I'd like you to keep this a secret, but every day I dial my number at the office just to hear the voice mail greeting and remind myself how I used to sound.
  
  
• I'd pay three bucks a day for The Los Angeles Times if that would keep more of its employees from being laid off.
  
  
• I'd like to believe that Monkee Peter Tork's voice will be as strong as ever when he performs with his Shoe Suede Blues band in Cerritos in October.
  
  
• I'd like to think that when this cancer business ends happily for me, that I somehow will be a better person for having gone through it.
  
  
• I'd love to see Jon Stewart interview Octo-Mom.
  
  
• I'd weigh 400 pounds today if food fantasies were actual calories.
  
  
• I'd like to believe that all of the rock stars I idolize are all upstanding human beings but two books I've just read have shown me that a few of them are real jerks.
  
  
• I'd like to pick up my cycling routine right where I left off when I stopped riding, but when I recover I have a feeling I'm going to need training wheels.
  
  
• I'd be less prepared to deal with cancer and AIDS if I didn't have the example of my late Mom's incredible strength and courage to inspire me.
  

–––

Thank you, Laurie Goodman, for your donation to The Susan G. Komen Race for the Cure, and for continuing to pass on the spirit and mission of your friend Jim Slotnick to new generations of medical providers.

The Susan G. Komen Race for the Cure benefiting breast cancer services, awareness and research, takes place today.

Susan G. Komen for the Cure is the only breast cancer organization where 75 percent of the net proceeds raised by the Los Angeles County Affiliate stay in the L.A. community. Nearly $6 million has been raised in the past 11 years to local organizations providing breast cancer services. One-quarter of the net funds raised support the Susan G. Komen for the Cure National Grant Program.

Visit my Race for the Cure page or join me at the Rose Bowl today. If you can't make it for the event's beginning, come down anyhow to greet walkers and runners when we return.

Click Here to Donate

Stop the presses

The cheer of the hour is "Only eight! To ra-di-ate!"

Aside from shaking a pom-pon, I'm taking things real easy. Next week, I'm going into the office only two days, and then I'll be off for five days straight, bringing me to the final scheduled session of treatment to clear me of cancer.

I don't regret working through my treatments up till now. But friends and co-workers have helped me to admit that the time has come to give my body and mind a rest during the home stretch of eight radiation treatments, and a final round of chemo.

On Friday I did a press check on a printing job at a plant in Culver City.

I was at the plant to ensure that the job the company was doing for me looked the way I want and how my bosses expect: that the colors were balanced properly and that no glitches emerged after my boss and I signed off on a proof earlier in the week. I visited the plant twice, once for each side of the large signatures that will be folded, collated, stitched and trimmed on Monday and Tuesday.

I love witnessing printed materials taking shape. I love shaking the hands of the craftsmen who run the machines –and in my career, printing plant personnel have been all been men– and I love following my job as it rolls through the presses.

My first job out of college was at a daily newspaper, and there was a large window in the newsroom overlooking the massive press. Around lunchtime, the presses began to roar, and newsroom staff could watch their creative output emerge in newsprint-and-ink form.

During my time at that newspaper, the plant was remodeled, and we lost the bird's eye view of the printing press.

I thought that something important was sacrificed when that happened. You can guess how I might feel about what was lost when the Internet came along, and threatened to make physical print production irrelevant. Publishing today is often silent, sterile and scent-free, and many mighty newspaper presses have been put to pasture.

In January, before I went into the hospital, the project that ran on the press yesterday was still taking shape. I expected to be out for two or three weeks, and I assumed another graphic artist would be called in to complete what I began. But my health was my top priority so it was easy to let go.

Happily, I came back to work in February, and picked up where I left off before my cancer diagnosis.

On Friday, a flaw in production required plates in my job to be remade, so the printer asked me to sit in his reception area until the problem was resolved.

It wasn't long after I sat down that I fell asleep. A good 45 minutes passed before the printer was ready to bring me back in the press room, so I was able to take a fairly long nap.

That I fell asleep so quickly and soundly told me that it's time to give my body a break.

My dream is that I will be fully recovered by early April, and I told the head of the printing company that I'll probably be back soon with another project.

Recovery may not happen that swiftly. It may not happen at all. I'll address that question when it's time.

For now, I'm just going to relax. The closest I'll be getting to a printing press will be by watching a DVD of "His Girl Friday."

–––

Thank you, Lisa O., for your generous donation to The Susan G. Komen Race for the Cure!

The Susan G. Komen Race for the Cure, benefiting breast cancer services, awareness and research, takes place on Sunday. Susan G. Komen for the Cure is the only breast cancer organization where 75 percent of the net proceeds raised by the Los Angeles County Affiliate stay in the L.A. community. Nearly $6 million has been raised in the past 11 years to local organizations providing breast cancer services. One-quarter of the net funds raised support the Susan G. Komen for the Cure National Grant Program.

Visit my Race for the Cure page or join me at the Rose Bowl tomorrow, beginning at 7 a.m.

Click Here to Donate

Roseanne was right

You know how Roseanne Rosannadanna once pulled a lil' piece of "stuff" out of the corner of her eye and asked all of America, "What is this? Did this come outta me? Where am I gonna put it?"

That was more than 30 years ago, so you may not be familiar with Roseanne Rosannadanna. But I can really relate to Jane Curtin's special correspondent from Saturday Night Live's Weekend Update.

This cancer thing: it's always something. I've known that I have tongue cancer for less than two months, and every day brings a new surprise.

This week's twist is I've turned into a human Niagara Falls of sludge. Most of this week, I've been stomping around like Roseanne Rosannadanna, flummoxed by all of the stuff that's coming out of me and wondering where I'm going to put it all.

Unlike the "stuff" Roseanne Rosannadanna used to pull from the corner of her eye, my secretions don't vanish into the ether when I roll them with my finger.

The doctor I saw on Wednesday said that these symptoms are nothing to freak out about. Secretions, brought on by weeks of radiation therapy, are high on the list of annoyances among the patients she sees.

"Annoyance" doesn't come close to capture how I feel about this gunk. Don't be fooled by the first six letters of the word: there's nothing secretive about the secretions I've been spewing, both through my nose and my trach, which is a virtual aqueduct of the stuff.

Serchia men have always had uncommon strength when it comes to blowing our noses, and I'm no exception. And every time I honk my nose, my trach can't help but get in on the act, too.

If these symptoms don't ease up, I'm going to have to start wearing a bib or a rain slicker to complement my scarves, and mount a mirror on my shoulder to make sure the stuff that flies out of me doesn't land where it doesn't belong.

I wouldn't be surprised if the folks at work are wondering if they're sharing office space with Regan from "The Exorcist."

Thursday was particularly bad. By the time I left the office and arrived at Kaiser for my 5 o'clock radiation treatment, my shirt was drenched. I handed a note to the tech who prepares me for my sessions asking her to please wear latex gloves before she set me up. I think she wore doubles.

The doctor said this situation could last awhile, but I hope she's wrong.

In the meantime, I'm taking another look at the secretion-sucking machine that I was given when I was discharged from the hospital after my trach surgery.

It's about the size of a picnic basket, and fits on a wagon. It runs on electricity, so I doubt that I'll be dragging it to the beach.

The machine is another layer of inconvenience that this disease is raining down on me.

But it sure beats calling in an exorcist.



–––

The Susan G. Komen Race for the Cure, benefiting breast cancer services, awareness and research, is just two days away. Visit my Race for the Cure page or join me at the Rose Bowl on Sunday, beginning at 7 a.m.



Click Here to Donate

Marching orders for Maggie

Must have blasted one-third of my body weight in secretions out of my nose on Wednesday.

I missed the memo that stated that radiation therapy commonly wreaks havoc on the mucous membranes. The doc on duty in the Radiation and Oncology Department at Kaiser last night said there's not a lot that I can do about the situation but make like Dizzy Gillespie and blow.

But I didn't go home stuffy-headed and empty-handed. To relieve the scratchy throat that I'm also dealing with, the doctor wrote a prescription for hydrocodone bitartrate/acetaminophen.

That drug is new to me, so I wanted to make sure that it was safe to use with everything else I'm pouring down my G-tube. As the pharmacist handed the bottle to me, he explained that hydrocodone bitartrate/acetaminophen is just a high-falutin' name for cough syrup.

Are you wondering what I'm wondering?

Why is the name on the label hydrocodone bitartrate/acetaminophen –long enough to wrap around the bottle twice– instead of a three-syllable moniker that uses a fraction of the number of letters, and carries the same meaning?

When my head is feeling stuffy and I'm worn down from cancer treatments, I'm the guy who's least capable of getting complicated medication names right.

Well, maybe the incoming commissioner of the Food and Drug Administration can do something about this situation.

This week, President Obama is expected to name Margaret Hamburg as his choice as head of the FDA. After clearing Senate confirmation, the first item on Commissioner Hamburg's agenda should be to call on the pharmaceutical industry to re-label all of their products with new names that roll more easily off the consumer's tongue.

Dr. Hamburg, when the Senate grills you about your qualifications to regulate Big Pharma, fire back with these spiffy ideas to show those senators you're just the right public servant to get us out of this pickle.

• Recycle cast-off brands
  
  As U.S. automakers drive themselves off a cliff and into oblivion, no one has yet addressed what to do with all of those obsolete yet drug-label ready auto brand names that will soon start clogging linguistic landfills.
  
  Why not re-purpose those auto names for the still-thriving pharmaceutical industry?
  
  How easy it would be to remember that Hummers are the pills we take for hemorrhoids, Fusions are what we swallow to fight food poisoning, and Saturns are just the right remedy to cure seasonal affective disorder.
  
  
• One label, one name
  
  Took me years before I finally caught on that Slim Shady, Marshall Mathers and Eminem were all the same guy.
  
  It's no less challenging for me to keep the characters in my medicine cabinet straight.
  
  Let's put Big Pharma on a diet. No more giving every drug from acetaminophen to zonisamide dual identities, one generic and one brand. We're dealing with chemicals, not superheroes.
  
  Unfortunately, the Commissioner-to-be goes by the names Margaret and Peggy and probably Maggie, too, so she may not be the right public leader to champion this reform.
  
  Well, we can at least get Big Pharma to trim the woolier drug names down to a consumer-friendly portions. No more drug names that are designed to make us gag when we try to pronounce them and are good only for producing high Scrabble scores.
  
  
• Med moniker makeovers
  
  Longtime readers of Thinking Positive know of my queer fixation on anagrams.
  
  Well, last night I got a pair of scissors and some glue and anagramized all of the drugs in my medicine cabinet. I'm here to tell you that anagrams just may be the Rx to cure drug-labeling madness.
  
  Here's how some of the labels in my medicine cabinet read by the time I was through: Vein of Rot, A Bitter Rat, Resonant Nod; Alive in Mud; Cause a Vital Barf; and Reap Zits.
  
  Those names are way easier to keep straight in my head than tenofovir, bitartrate, ondansetron, lamivudine, abacavir sulfate, and prezista.
  
  Another one of my drugs anagramizes to Do a Horny Coed. That's just silly.
  

So there you go, Commissioner Hamburg. Go after Big Pharma! And do so with relish!

Fasten your selt belts

Something freaky happened while preparing for Tuesday's radiation session.

When the ThermaSplint mask was clamped over my face, my breathing suddenly became labored and I made panicky gestures with my hands to get the radiation technicians to remove it.

When the mask was off, I fished a pen out of my shirt and I scrawled a note explaining that it felt too tight.

In the late afternoon, my tongue usually is not as swollen as it is overnight and in the morning. On Tuesday, however, the swelling never diminished. When I arrived for my treatment on Tuesday, my tongue was as swollen and uncomfortable as it has ever been since this ordeal began, which meant that I had more face to cram inside the ThermaSplint mask.

It felt almost like I was going to black out –or worse.

At least I picked a classy CD to listen to during what I thought might have been my final gasps: Dusty in Memphis, by Dusty Springfield.

The technicians gave me a few minutes alone with Dusty and my frog before they returned to clamp the mask on again.

"If you have trouble breathing again," one of them said, "just wave your hands. We'll stop the treatment and come out."

I gave her my usual thumb's up gesture, but it was less enthusiastic than the others I've made.

I hate being left alone in the radiation room during treatment, lacking even the ability to yell to get someone's attention. I have a fear that an earthquake will strike while I am locked inside the ThermaSplint mask in the basement of 4950 Sunset, and when it does, the first through eighth floors of the building would collapse and crush my head, never mind my cancer.

The rest of the treatment was a struggle, and it was prolonged by the weekly X-rays. But I toughed it out, and made it home.

I have a lot of anxiety about the next two weeks.

Not being able to shake the swollen tongue on Tuesday makes me worry that it will only get worse for the remaining 11 treatments. I also can't get rid of a scratchy throat and nausea that shudders throughout my body after each G-tube feeding.

I never believed that licking cancer would be easy, but I may have underestimated the intensity of its punch.

Pessimism is unbecoming, but I'm not going to lie to you.

Just as I was about to close this blog on that down note, an e-mail from my sister-in-law in Colorado landed in my in box. She was in town again over the past weekend, and saw how the treatments are wearing me down.

"This too shall pass," she wrote. "Think of all your HIV treatments and what you've been able to survive. I know that you can beat this one, too!"

Thanks, sis. I'm slipping that pity card back into the deck.

–––

Loose ends

The CD case for the cast recording of Stew's Passing Strange that I brought to play during radiation therapy on Friday was empty. The CD was in my player at home. Luckily I had Stew's equally fine Guest Host album in my car that day, so I listened to that during treatment instead. In Monday's edition of The New York Times, Stephen Holden reviewed the Stew performance that I could not attend, and the photo accompanying the piece in the print edition was large enough to be seen on Google Earth.

A friend said that he enjoyed seeing Totie Fields' name dropped into this blog on Monday, adding that it made the late comedienne's wonderful voice come alive for him. "But I can't help wonder what percentage of your readers even know her name," he lamented.

YouTube to the rescue!

Thankfully, there are recordings like Dusty in Memphis to keep Dusty Springfield's voice alive. Ten years ago this month, she died in London from breast cancer.

Best foot forward

Jackets embroidered with the word "thrive" are all the rage at Kaiser these days.

It's a marketing message that Kaiser employees are rallying behind, and a winning one, in my book.

But show me the rack where I can find a jacket embroidered with the word "strive."

That's how I'm feeling today, the morning after beginning my fifth week of radiation therapy.

My tongue is playing its Angelina Jolie games again; my temples are throbbing with pain; my throat is sore; and my feet are shuffling as if I were a mechanical toy wheezing on waning D-cell batteries.

It's gonna be a tough week of treatments, followed by another tough week, followed by one last session of chemo and three additional days of radiation therapy.

And then I'll have to wait and see whether these treatments knock cancer out of my system. A friend coping with prostate cancer, quoting a line from Tom Petty and the Heartbreakers, told me last week that "the waitin' is the hardest part," and he knows what he's talking about.

I'm hoping that I'll be able to tap my energy reserves by the time that Sunday rolls around.

That's the day of the Race or Walk for the Cure, sponsored by the Susan G. Komen Foundation, and I just signed up to participate in a team from my workplace.

The Race or Walk for the Cure raises funds to support local breast cancer services and national breast cancer research programs. I know several women directly affected by breast cancer, and the research and prevention programs funded by proceeds from this event could help protect other women from the disease.

Why not set your alarm clocks early on Sunday morning and join me at the Rose Bowl in Pasadena? The fee for registration for non-timed participants is only $35, and just an additional $5 for those who want their participation timed.

I've done my share of competitive races in my day, but I'm not going to be in any hurry to finish the walk.

The goal for the event is to raise $1 million, and at this writing they have more than $600,000 to go.

So, c'mon: Help support a great cause and sign up now.

Think pink!

Checking out the runway

The New York Times' Men's Fashion Supplement for spring was published on Sunday, and its timing could not have been better.

Spring is less than two weeks away and I still haven't settled on a look for the season.

Seems like it wasn't that long ago when I could throw on a pair of jeans and a vintage Rolling Stones T-shirt and consider myself presentable for any situation, at least in Southern California, where every day is Casual Friday.

These days, my body is harder to dress.

With this Mother of All Recessions nipping at my heels, I can't afford to hire a fashion consultant. I need all the free guidance I can get, so The New York Times' Men's Fashion Supplement fell into my lap on Sunday like manna from Mr. Blackwell.

If this supplement had been published in January, my first question would have been whether I should wrap my Foley catheter over or under the ankle of my slacks, and which designer label is hot this season for urine collection bags. Happily, that problem was settled by my urologist weeks ago.

That frees me up to move on to Fashion Challenge No. 1: How to dress in style while sporting a G-tube.

I could never master the rule about when to tuck your shirt inside your pants and when to leave your shirt tails out, and I'm struggling with the same question about my G-tube.

Sadly, The New York Times' Men's Fashion supplement on Sunday didn't offer much help.

The book is 118 pages long and packed with ads and features depicting impeccably dressed men, but not a single model among the scores shown in the supplement has a rubber G-tube protruding from his bare torso. Not one!

Nor could I discern that tell-tale G-tube bulge beneath the shirts of the models who weren't flashing their taut tummies.

Until I get some concrete direction on this situation, I'll keep my G-tube concealed between feeding times. But I know that I am fooling no one. Anyone who gleans more than a passing glance at my mid-section can tell that something is wiggling around underneath my shirt.

It sure would be liberating to let it loose.

Challenge No. 2 for me this season is what to do about the area just below my Adam's apple, where my doctor drilled in a plastic tracheotomy tube in January.

Scarves have served me well throughout the winter but these scarves are already looking mighty conspicuous in balmy Southern California.

Even if I could get away with wearing scarves in triple-digit temperatures, whenever I sneeze or blow my nose, gooey stuff sprays out of the trach and drips onto the scarf and onto my shirt.

The New York Times' men's fashion mavens are disappointingly silent on this point. None of the models splashed in yesterday's supplement have artificial breathing aids implanted in their necks, unless they were airbrushed out after the photos were snapped.

Well, maybe I can provide some leadership for men's haberdasheries everywhere.

Wasn't that long ago that piercings were rare in men. And what is my trach if not an extreme piercing held in place by a dog collar?

Fortunately, I was able to squeeze some value out of yesterday's Times Men's Fashion Supplement.

The book shows that I am right on the money about two fashion trends this season.

Head's up, Joaquin Phoenix: Whiskers appear to be on the way out. And lucky for me: The searing effect of radiation therapy on my beard means that I am right in sync with the baby-face boys shown in the Times.

Second, the gaunt Jack Skellington look is still in.

My doctors have been harping on me to gain weight, which has been stuck at about 135 pounds over the past few weeks. And I don't think that there is a single male model depicted in yesterday's fashion supplement whose weight comes within two cheeseburgers and a milk shake of my weight. A few of these mop-topped rails make Kate Moss look like Totie Fields in comparison.

So my present weight and hairless mug give me at least a whiff of style.

Maybe that's enough to offset the jarring effect of the G-tube and trach. Maybe not.

But it'll be enough to get me through this season. By the time that the fall Times Men's Fashion supplement rolls around, I hope to be fat, hairy, and G-tube and trach-free.

And blissfully out of style.

Monkee business

One Saturday in 1967, my family had lunch at a coffee shop somewhere in Hollywood, and sat in a booth that had just been occupied by the Monkees.

At least, that was what I recall the waitress telling us. She said I was sitting in Peter's spot. I saw that waitress' face, and I was a believer.

OK, flash forward 42 years. Peter Tork of the Monkees and I are weaving in and around each other's lives again.

Last week, Peter announced that he had been given a diagnosis of Adenoid Cystic Carcinoma, a rare form of head and neck cancer. The following day, in New York, he had surgery and yesterday a statement on Peter's website said that the surgery was successful. Peter now is recovering in good spirits, according to the announcement.

Peter's cancer is on his tongue, just like mine, and is believed to me slow-moving, as I hope mine is.

Keep good thoughts in your mind for Peter's full recovery. You can drop him a line at:

Peter Tork
524 San Anselmo Ave #102
San Anselmo, CA 94960

Stew on the menu

At 5 o'clock today in Kaiser's Radiation Oncology Department, I'll lay down on a metal platform, get my head clamped inside my ThermaSplint mask, and hold a stuffed toy frog against my belly as my 20th session of radiation therapy begins.

At virtually the same time, in the Alice Tully Hall at New York's Lincoln Center, a singer-songwriter named Stew will walk on stage.

Last fall, I snapped up a ticket to see Stew in New York tonight.

A buddy turned me on to Stew many years ago, when he performed in and around L.A., usually fronting the band The Negro Problem, often performing quieter, more intimate sets accompanied by Heidi Rodewald on bass and vocals.

One night, after Stew and his band completed a performance at the west side club 14 Below, I plucked the master set list for the show right off the stage to keep as a souvenir.

Later, I heard that Stew needed that set list back. Eventually, I turned it over to Stew's manager and felt like a heel for taking it.

Stew sightings in L.A. then started getting scarce. When Stew composed a song called "Gary Come Home" for SpongeBob SquarePants, I really identified with SpongeBob's longing for his pet snail who ran away.

I wanted Stew to come back to L.A.

The last time I saw Stew was when I spotted him in the crowd at Sunset Junction in Silver Lake several years ago, and he didn't have a guitar around his neck.

The L.A. music scene's loss was the rest of the world's gain. Two years ago, "Passing Strange," a musical written by Stew and Heidi, and starring Stew, performed off Broadway, and won a gaggle of awards. Last year, "Passing Strange" moved to the Great White Way, which is kind of an odd nickname for a place seen as the pinnacle of theatrical success.

Stew triumphed there, too. "Passing Strange" won a 2008 Tony Award for Best Book of a Musical.

In a New Year's Eve post on Stew's website, he wrote, "I don’t know which was more unlikely: Obama becoming Prez or a middle-aged rock freak winning a Tony."

Here's something even more surreal: me opening my in box one morning last month and seeing an email from Stew.

In it, Stew told me that he checked out this blog and read about my cancer situation. Stew said that he is now a new fan, even as he acknowledged that he still remembers that I was the goon who grabbed that set list at 14 Below.

The subject line of Stew's email was "keep kicking ass."

That's exactly what I'll be doing later today at Kaiser when Stew and Heidi begin to perform in New York.

I won't be sitting in the Alice Tully Hall but I am bringing the cast recording of "Passing Strange" to my session at Kaiser today, and I'll ask the radiation tech to cue the CD to track one and bump the volume up to 11 before he starts to zap me with radiation.

Now you don't know me and I don't know you
So let's cut to the chase the name is Stew
I'll be narrating this gig, so just sit tight
We might play all night

In a reply to the email that Stew sent to me, I told him that I had hoped to make it to New York for tonight's performance, but my cancer treatments sidelined that plan.

I figured it was only fair to tell Stew I wouldn't be in the audience at the Alice Tully.

Otherwise, he might have decided to nail tonight's set list to the stage.

––––

My ALC fund almost quadrupled on Thursday! Thank you, Monica and my friends in Philly for your donations to the the L.A. Gay & Lesbian Center. Visit my AIDS/LifeCycle 8 page.

A reason to ride

Last May, I had all of my teeth extracted to make way for a pair of dentures.

I rode my bike to the oral surgeon's office near USC on the day of my extractions, and pedaled my bike back to the Valley with a mouthful of bloody gauze when the procedure was over.

AIDS/LifeCycle 7, 545-mile fund-raising bicycle ride from San Francisco to Los Angeles, was less than three weeks away, and I thought I could use the training.

Somehow I had gotten the nutty idea that my gums would heal in time for me to debut my new dentures on ALC 7.

Instead, I learned that my gums would not heal until the week after ALC 7 ended, and then I would still need wait weeks longer for the dentures.

I wasn't gonna let toothlessness get in the way of me riding in ALC 7, so I did the all 545 miles of the ride, fueled mostly by oatmeal, applesauce and Fig Newtons.

At camp in King City on the second day of last year's ride, I registered for AIDS/LifeCycle 8.

Now it's nine months later. In about 12 weeks, ALC 8 will begin in San Francisco.

I'm in the middle of treatment for cancer, I've got plastic and rubber devices keeping me alive, and I'm still toothless. I put my dentures aside last Thanksgiving when I gave up on trying to fit them in my mouth around my tongue, which was swelling larger every day and I didn't understand why.

Although I haven't been on my bike in months, I still have a crazy idea that I might be ready to ride in ALC 8, and fulfill my commitment to raise $5,000 for the HIV services of the L.A. Gay & Lesbian Center.

With all of the wacky turns my life has taken, I haven't even started fund-raising.

The only donation in my ALC 8 kitty today is from the very first person I called my best friend. Sherry Sylvester lived across the street from me when I lived on Evergreen Drive in North Tonawanda, N.Y. Our family moved to California in 1966, when I was 8, and I lost touch with Sherry for nearly 43 years.

Last fall, Sherry somehow tracked me down online. We resumed our friendship, and Sherry provided the starter yeast for my ALC 8 fund.

So I've got $4,925 to go.

I'm not going to ride in ALC 8 if my doctors forbid it, if the ALC staff thinks it would be unsafe for me and the 2,500 other riders, or if I feel in my gut that I'm not healthy enough to ride.

A cancer diagnosis alone may not keep me out of the saddle, but my trach and G-tube will.

Yesterday a roadie friend of mine with health challenges of his own told me that he expects to see me on the ride, as he has for the past three years.

If I can shed my tubes and if my docs can blast these cancer cells to smithereens, I want to hop on my bike and roll out of the Cow Palace in San Francisco on May 31 and begin my fourth ride to L.A.

Don't know if I can pull off a stunt like that. But even if I can't, I still want to try to fulfill my commitment to raise $5,000 for the HIV services of the L.A. Gay & Lesbian Center.

The Center was there for me in 2005 when I couldn't keep up with COBRA payments on my health insurance and I turned to the Center's Jeffrey Goodman Special Care Clinic for free HIV care.

Today, I work in a clinic that also provides free health care. I know that people are finding themselves in the same fix I faced four years ago, and desperately need access to care.

And this economy –which a New York Times business writer described on Wednesday as a "Great Recession"– is going to put more people into that position. Some of them may walk through the doors of the Goodman Clinic and seek HIV services.

I don't want to let those folks down.

I don't want to let the thousands of current patients of the L.A. Gay & Lesbian Center down.

I don't want to let my roadie buddy down.

I don't want to let Sherry Sylvester down.

And if I can lick this cancer nonsense and get myself roadworthy by May 31, I don't want to let myself down.

Will you join me in supporting AIDS/LifeCycle 8?

Visit my ALC 8 page

Whoa, man, hear me roar!

Guess what, gang? On Tuesday night, for the first time in three months, I used my voice!

Oh, I am so ashamed. That was such a cheap gambit to draw you into today's blog.

Yes, I used my voice on Tuesday night, but no, it wasn't the voice that you may have thought I meant: the voice that cancer sucked out of me last fall.

No, I used my electoral voice.

Tuesday's primary nominating election in L.A. had a turnout in low double-digits –not percentage, but actual voters– so the influence of my voice on the outcome of the election was huge. It was far more powerful than that election last November when nearly everyone chimed in, blunting the impact of my lone voice.

But on Tuesday night, I was Paul the Kingmaker. And, boy, I savored every minute.

I strutted into the eeriely silent polling place, signed my name on a page void of any other signatures, accepted a ballot from a precinct worker who was digging into a bag of microwave popcorn with her spare hand, and walked into one of the four empty booths.

Then I let my voice roar!

I picked up the pen and InkaVoted for one of the candidates for mayor. I InkaVoted for a city attorney. I InkaVoted for a city controller. I turned the page and InkaVoted for LAUSD Board and Community College District trustees, and flipped through the InkaVote vote recorder till I arrived at the page where I InkaVoted on the city measures.

Inka! Inka! Inka! Inka! Inka!

But with only 10 pages in this election's InkaVote recorder –most of which said only "Continue to the Next Page"– my bellowing reign of power ended abruptly. Two minutes, tops. I wasn't ready to put down the blotting pen and relinquish my resurrected voice.

So I flipped backward through the book and Inka-Dinka-Dooed it all over again. If anyone calls for a recount in this election, you won't be seeing any election workers raise my ballot to discern this voter's intent.

I signaled a thumb's up to the precinct worker and slid my ballot into the box.

As I drove home, I reflected on another big deal I experienced on Tuesday.

Tuesday marked the 17th day of my 33-session round of radiation therapy treatments at Kaiser.

That means that I have cleared the halfway mark in my treatment. Just like the most grueling miles of a marathon are the ones in the second half, the toughest days in my cancer treatments may be the ones yet to come.

But unlike a marathon, when I walk out of the Radiation Oncology Department at Kaiser on Wednesday, March 25, there won't be any finish-line celebration.

Months may pass before I know whether my treatments succeed or fail. I'll probably be breathing through my trach, eating through my G-tube and communicating by making thumbs-up gestures not only for the rest of the winter, but well into spring, too.

Don't know where my cancer battle will lead, but I do know this: I've drawn a big fat red circle around Tuesday, May 19 on my calendar.

That's the day of the city general election. And my guess is that more citizens will sit out that election as the droves who stayed away from the polls on Tuesday.

I'll get to pick up that InkaVote pen, clear my throat, and let my voice rip through the city again.

Nope, not even cancer can quiet the Inka-Dinka Dude.

This ain't no cakewalk

The war on my cancer cells resumed on Monday when, after a two-day unilateral truce, they got carpet-bombed with fresh rounds of chemo and radiation.

I was all over the Kaiser Kampus on Monday: I reported for my second chemotherapy treatment at 8:30 in the morning, and then had my 16th radiation therapy treatment at 5 o'clock.

In between the two sessions, I replenished my supply of liquid Extra-Strength Tylenol –Kaiser pharmacists may wonder why it's so hard for them to keep that product on the shelves this winter– and saw Dr. Birusingh.

Dr. B, a head-and-neck surgeon, is the first provider I saw after going to my HIV doctor for a referral to get to the bottom of my problems, and Dr. B is the one who first suspected cancer as the cause. In January, Dr. B performed the biopsy on my tongue and drilled the cavity in my neck to make way for my trach.

After that surgery, when Dr. B came to my hospital room to update me on my condition and one of my friends fainted as he listened in, Dr. B was the guy who came to that friend's rescue.

If you are a return visitor to TP, you know that keeping the players in this blog straight can be a challenge.

Dr. Buchschacher –another Dr. B.– is the other significant KP doctor on my team. So starting today, I'm giving them the code names Dr. Thiamine and Dr. Riboflavin, or Dr. B1 and Dr. B2 for short.

For my visit today with Dr. B1, I jotted down a page of questions for him to answer.

"Getting a lot of phlegm building up in the back of my mouth. Normal?"

"Tongue still swells. Radiation causes swelling, too, right?"

"Getting white stuff on my tongue. Anything to worry about?"

Dr. B1 assured me that the side effects I'm seeing are all normal.

He'll continue to monitor my progress through Kaiser's electronic medical records and see me again in April, unless something comes up and I need to see him sooner. I have his personal email and cell phone, and he encourages me to use them.

The only gloomy note Dr. B1 sounded during Monday's visit was something he had mentioned a while back but I wasn't prepared to hear at the time: I may not know whether the treatments I'm getting now succeed until three to six months after they conclude.

I never doubted that I was up against a formidable foe, and didn't expect that the war on my cancer cells would be a cake walk.

There's a lot working in my favor. I'm tolerating the side effects of treatment fairly well, and my G-tube and trach don't keep me from enjoying life's fundamental activities: working, going to movies and an occasional concert, and pawing through CD bins at Amoeba.

And I am blessed to have a sturdy stable of family and friends who keep my spirits up and are always willing to help.

My life isn't normal, but it ain't bad.

Even that phelgm factor I mentioned to Dr. B1 today has a silver lining: After three months of eating only liquid nutrients through my G-tube, it's refreshing to have something sliding down my throat again.

I even wrote lyrics to a jingle to celebrate this culinary discovery. I don't want to attract attention from the legal department at Campbell's Soup, or make any of you wince, so look for this jingle as an Easter egg on the Thinking Positive DVD.

Yeah, it's odd to sing about phlegm, but you gotta play the cards you're dealt, not the ones you wish you had in your hand.

But as soon as I get rid of this G-tube, I'm ditching the phlegm-Isosource diet. And not looking back.