Friday, August 28, 2009
A Pos Ped rides again
Made yet another stride in getting my groove back this morning: I wore my 2009 Positive Pedalers jersey for the very first time.
Positive Pedalers is a group of people living with HIV/AIDS dedicated to eliminating stigma. Most, but not all, Pos Peds are cyclists, and many participate in fund-raising rides across the country for AIDS and other causes.
I ordered my Pos Ped jersey early this year, and planned to wear it during AIDS/LifeCycle 8 in June. Cancer kept me off the AIDS ride this year, and up till last week, it also kept me off my bike.
My Pos Ped jersey arrived in the mail last month, sent by my buddy Nathan, but I just tossed it in my closet without even removing it from the plastic bag.
This morning, I broke open that bag and slipped on the jersey. Then I got into my cycling shorts, put on my shoes, plopped the helmet on my head and headed to work.
I never stopped being a Pos Ped, but it sure felt great today to look like one, too.
Thursday, August 27, 2009
All wet
For four days now, there has been no hot water in my apartment building.
The first day that the hot water was out, I took a cold shower and I'm still not over the shock. The second day, I stood in the shower and strategically splashed water on parts of my body, and the third day I smeared myself head to toe with deodorant and hoped to make it to sundown without having to stand close to anyone.
I went to bed last night praying that Tropical Storm Danny would pay a surprise call on L.A. If my prayers had been answered I planned to get up before dawn and run naked in the alley long enough to get soaked and lather and rinse my hair.
Well, no precipitation fell in Southern California this morning, so I had planned to skip the shower altogether and warn my co-workers that I think I have H1N1 virus and to stand 50 feet away. But while feeding myself breakfast through the G-tube I suddenly sneezed and 60 ml of Isosource erupted out of my syringe, dousing my body and my living room with high-nitrogen, high-calorie, vanilla-flavored ooze.
I needed a long, cleansing shower but was too much of a sissy to stand beneath cold water again.
My only options were to call in sick or go to the gym and use the showers there.
I haven't been to the gym since well before the end of the Bush administration. Part of the reason is that I haven't really had the energy to exercise but I also have been shy about showing my tubes in the locker room.
But today I had no other choice but to go to the gym, get naked and shower, rubber tubes and all.
I just gritted my gums and pretended like no one was looking, although I did catch a few guys staring at my tube hanging from my stomach, and it's hard to conceal the tube in my neck.
Whatever. I feel fresh as a daisy and I'm prepared to have a group hug with my co-workers, if that should be on today's agenda.
If the hot water crisis at my apartment building goes into a fifth day, I'm sure I'll go back to the gym tomorrow for a shower. Heck, I may even work out.
Wednesday, August 26, 2009
Frozen in time
I gotta stop putting off addressing my refrigerator problem.
You see, I figure if I just keeping papering the door with Keith Richards pinups, eventually the fridge will disappear behind the clutter and I'll forget that the fridge is even there.
The problem with it is that the thing hogs space in my kitchen, and for no good reason. I open my fridge just twice a day, early in the morning and at supper time, when I grab a cold bottle of water to pour down my G-tube.
You'd think that the shelves of a fridge owned by a single guy who eats through a G-tube would be bare. Since last December, Isosource has been the only substance that I use for food, and I keep that at room temperature. Oddly, my refrigerator is packed, mostly with food that I was gumming late last fall after chewing and swallowing became too much of a challenge.
I guess you could say that I'm frapathetic: I just can't be bothered to toss out the crap in my fridge that I no longer need, which is virtually everything on its shelves.
So allow me to play Carol Merrill and show you what's inside my fridge. Besides the chilled drinking water that I already mentioned, and some cobwebs, here is what's stocked in my fridge:
- 1 packet of Fig Newtons
- 1 10 oz. can of Campbell's Tomato Soup
- 14 packets of Quaker instant oatmeal
- 6 servings of Mott's applesauce
- 1 stick of Blue Bonnet butter
- 1 package microwave popcorn
- 64 oz. container of prune juice
- 1 liter of Diet Coke Zero
- 8 containers of Jell-O pudding
- 1 of package of Christmas potpourri
- 1 bottle of Grateful Dead Un-Wine
- 2 bottles of apple juice
- 1 jar of tupelo honey
- 16 oz. Skippy peanut butter
- 20 oz. bottle of Sprite
- 2 8.4 oz. cans of IZZE sparkling beverages
- Several bottles of HIV meds I stopped taking years ago
- 1 FUJI disposable camera
- 1 box denture cleanser tablets
I suppose that the prune juice may come in handy the next time I experience internal plumbing "issues," and I hope that my denture cleanser tablets will spring back into action some day, if I ever am able to get my dentures back into my mouth. But barring those exceptions, there's nothing in my fridge that I expect to need anytime soon, or could not store more efficiently at room temperature.
For now, my fridge is just a time capsule from November 2008, and a surface where I can throw my magnet collection. I really should unplug the damn thing and clear its shelves.
And invite my neighbors to my place for a prune juice and oatmeal Labor Day blow-out.
Tuesday, August 25, 2009
Lunch is poured
Queen Elizabeth II won't like me distorting her words to fit my situation, but this annus has not been completely horribilis for me.
One bright side of having diminished energy levels is that I have developed a hot-and-heavy addiction to watching DVDs at night after I get home from work.
This requires chronic shopping for fresh fixes for my habit. On a recent visit to Freakbeat Records in Sherman Oaks, I picked up a DVD collection of the first season of "Everybody Loves Raymond" even though I had never actually seen the show before. Yeah, yeah, yeah, so I'm a little slow.
At the end of the credits in each episode of "Raymond," there's a mention of "Where's Lunch," the show's production company. Each episode shows a different plate of food being set down on a placemat, while some jazzy piano music plays.
I've seen Italian food, I've seen turkey, I've seen chicken, and I've seen soup. I've seen just about every type of food you can imagine in the "Where's Lunch" bit but the food that I have for lunch every day: three cans of high-nitrogen, high-calorie, vanilla-flavored liquid Isosource.
I've got eight more seasons of "Raymond" to catch up on. It's bound to show up sooner or later.
Monday, August 24, 2009
Monday-morning spin
A family member posted on Facebook on Sunday that he thinks that Cash for Clunkers is the best thing President Obama has done.
I better be careful about saying anything about politics. The last time I dipped my toe into political waters —the shallow end of the pool, naturally— a follower started hunting for the Escape key and threatened to bolt from this blog for good.
But if any of you on Facebook have President Obama in your stable of friends, please tell him that I hope he can get Congress to pump more money into Cash for Clunkers after it expires at 8 p.m. EDT today.
Giving car-buyers $4,500 rebates for trading in fuel-wasting clunkers for fuel-efficient new cars was a good idea. But it's time to remove car dealers from the Clunkers equation.
How about giving folks a $4,500 rebate when they trade in their clunker for a bicycle?
Friday, August 21, 2009
Giddyup!
My poor bike has been under involuntary house arrest for the nine months that my cancer ordeal has been unfolding.
I used to ride my blue Felt road bike daily to work, and go on longer rides on weekends. But when I got my G-tube, cycling seemed to be too risky, so I switched to my car for all of my transportation.
Getting my trach the following month just made cycling even more problematic.
Well, a week ago my car began to get a bit wheezy every time I turned the ignition and on Thursday morning it wouldn't start at all. I thought about taking the bus to the office —actually, I need to board three buses to get to my workplace— or take a vacation day to deal with getting the car to the shop.
But I went back to my apartment, saw my bike leaning against my filing cabinet and decided to go for it.
It took a while to get into gear for riding. Both of the bike's tires were completely deflated; I had to tear apart my closet to find my cycling shoes; and the chin strap of my helmet felt strange on my partially numb face. The last time I wore any kind of head gear was in March when I donned my ThermaSplint mask for my final radiation treatment.
The first hundred yards or so in the saddle were a little wobbly, as I reacquainted myself with clipping my feet into the pedals, and staying upright with a heavy backpack weighing me down. But in no time at all I was cruising like a champ. It felt as if I had never stopped riding.
None of the cycling disasters that had spooked me over the past nine months spoiled my ride into work. My G-tube didn't fall out of my shirt and get tangled in my spokes. No Canadian geese flew inside my trach and forced me to dive into the L.A. river. I didn't get creamed by any inattentive motorists because I couldn't scream to prevent a collision.
And the ride home was just as calamity-free.
Once I rolled my bike back into my apartment, I asked a neighbor to phone the Auto Club for me so I could get my car into the shop. It turned out that I just had a bum battery. (There's a reason Die Hard batteries were not instead named "Immortal.")
My car starts right up now. But now that I know that having a G-tube and trach and not having a voice are no reasons to quit cycling, it's going to be hard to leave my bike behind at home every morning when I go to work.
If it's OK with Gene Autry, I'm going to co-opt his theme song as my own. Whoopi-ty-aye-oh! I'm back in the saddle again.
Thursday, August 20, 2009
Now that's what I call service
I had planned to meet a friend in Los Feliz on Tuesday night so we could walk together up the hill to the Greek Theatre for the Elvis Costello show.
The Greek is just a short hike from the the intersection of Vermont Avenue and Los Feliz Boulevard, but my buddy told me to make sure I was well hydrated. After parking my car on a side street off Vermont, I sent a text message to him to let him know I was going to sit in my car long enough to slam a bottle of water and a liquid Extra-Strength Tylenol chaser into my belly before meeting him on the corner.
I poured the Tylenol into the measuring cup and placed it on the dashboard, and unscrewed the bottled water. Then I opened a few buttons of my shirt and pulled out the G-tube, drawing some curiosity from a woman walking her dog on the sidewalk.
The dog yipped a few times and the woman looked at me funny. I can't imagine what she thought but a man feeding himself with a G-tube may not be the element that she wanted to see in her neighborhood. But hey, I wasn't the one pooping on the sidewalk.
The woman hurriedly moved on —possibly to ring Chief William Bratton's doorbell— and I starting digging around in my backpack for my syringe so I could get the fluids down the tube and meet my buddy.
In my backpack, I found loose change, a few unpaid bills and a packet of mayonnaise from 2008, but no syringe. I left it behind on my desk at the office.
Driving back to the office or going home to get another syringe wasn't a practical option —both destinations were at least 10 miles away and I didn't want to miss Elvis' opening act. Then I remembered that there was a service station with a small market at the corner of Vermont and Los Feliz.
Surely the service station would sell me a plastic funnel that I could use to pour my fluids into my belly, I thought.
I scampered up the hill toward the service station. After spotting my friend sitting in the grass waiting for me across Los Feliz, I shot a text to him to let him know that I needed a few more minutes.
I walked into the service station market and scoped the shelves for a funnel. There was a rack of motor oil, but no funnels to use for pouring it.
I opened my note pad and drew a sketch of a funnel. Below the drawing, I wrote "You sell these things here?" and handed the note pad to the attendant behind the counter.
He stared at my drawing, took a glance at me, then looked again at the sketch. Then a broad smile came to the attendant's face.
He took an empty Marlboro carton and tore it in half. Then he shaped the cardboard into a cone, and punched a few staples into it to hold it together.
I could tell just by looking at it that the tip of the cone wouldn't fit into my G-tube. Even if it had, the home health nurse who told me to use my G-tube only in sterile environments would be appalled if she knew I would even consider contaminating my tube with cardboard that was laying around on a service-station counter. But I was certainly impressed by the attendant's ingenuity, and I hope you are, too.
I accepted the makeshift syringe, gave the attendant a buoyant thumbs up and walked out the door.
If he had known that I needed it to shoot fluids into my belly, I bet he would have called on Chief Bratton, too.
Wednesday, August 19, 2009
Caruso in my head
I get a little nervous at rock concerts these days. When I don't sing along, people around me get suspicious and shoot "Hey, who's the narc?" glances at one another.
Elvis Costello performed at the Greek Theatre in L.A. on Tuesday night and my seat was in the pit right below the stage, where audience participation is usually universal. Luckily, Elvis Costello is touring with a bluegrass band this summer, and he has been breaking in about a dozen songs from a new album. The new crop of songs don't yet have the familiarity of "Pump It Up" and "Alison"; even Elvis kept his eyes fixed on lyrics on a music stand when singing the new tunes.
But enough classics were sprinkled throughout Elvis' set —"Blame It on Cain," "(The Angels Wanna Wear My) Red Shoes," "Everyday I Write the Book"— that the audience had plenty of opportunities to follow the bouncing ball and sing along.
Everyone but me, that is. I can't even pull off a decent hum. And when Elvis tossed in a surprise rendition of the Rolling Stones' "Happy," it killed me to sit in my seat poker-faced during the chorus. (Keith, don't take it personally.)
Before the first encore, I spotted a couple vacate their seats in the first row, so I couldn't resist promoting myself to take their place, right at Elvis' feet. I prayed that Elvis wouldn't scan the faces in the front row and spot my tight-lipped puss.
I don't think he noticed me, thank God.
But I better have my voice back by the next time that the Stones roll through town. The Stones audience —maybe even the band themselves— would surely turn on me if I don't join in by shouting "I said Yeah! Yeah! Yeah! OOOOOOOO!" at the end of "Brown Sugar."
My photos from Elvis' performance at the Greek
Tuesday, August 18, 2009
Hunkering down for the long haul
Got a close-up look on Monday at the creepy underbelly of last month's biopsy results.
In Monday's visit with Dr. B1, the head and neck doctor who has had to put up with me more than any other Kaiser provider, he handed a copy of the surgical pathology report from the July 31 procedure to me.
The headline news from that report —that no more evidence of cancer was found in me— was joyfully disclosed here almost as soon as I read it in an email from Dr. B1.
On Monday, Dr. B1 shared additional findings by the pathologist.
I didn't really learn anything new, but the terminology that was used in the report to describe my condition sounded so much scarier than I imagined. (If the pathologist who wrote it ever decided to leave Kaiser, I bet he could earn a lucrative salary from the GOP spinning the Obama health care plan to the electorate.)
According to the pathologist's report, "granulation tissue with extensive necrosis and inflammatory cell debris" was found on both the left base and the deep base of my tongue, and "bacterial colonies" were found on the left base of my tongue.
I knew that there was extensive cell damage resulting from radiation therapy on my tongue —I'm reminded of that every time I try to open my mouth— but the way I had been privately describing the situation was that my tongue simply had an "owee" and just needed time to heal.
"Necrosis" sounds like an arch-villain of Spider-Man, or a death-metal band opening for Marilyn Manson. And a cluster of bacterial pup tents on my tongue would give me plenty to be nervous about, but entire "colonies"?! I only hope that those bacterial Ben Franklins don't take steps toward full statehood.
The bottom line is that if my tongue is healing at all, it is doing so at an extremely slow pace.
After Dr. B1 and I reviewed the pathologist's report, he outlined the next steps for me in my treatment plan: another visit to the Radiation Oncology Department at the end of the month, more imaging studies and possibly more surgery.
So Monday's visit in the Head and Neck Department wasn't the victory lap I had hoped it would be.
For one, my fingers had been crossed that Dr. B1 would tell me that he would agree to begin divorce proceedings between me and my trach. Instead, it looks like I'm going to be saddled with my trach for some time. Dr. B1 doesn't want to remove the tube until a clearer picture emerges about what's happening with my tongue and jawbone.
"Wait and watch" were the doctor's orders.
As far as the cancer is concerned, Dr. B1 said that the risk of recurrence becomes very low after five years. That means I'm going to be having cancer heebee-jeebies well into President Obama's second term or President Palin's first.
Don't get me wrong. I'm still kicking my heels and flashing "V" for Victory signs about beating cancer, at least so far. As Dr. B1 reminded me on Monday, the challenges that I'm facing now are annoying but they are not life-threatening.
There's a huge chasm between life-threatening and quality-of-life threatening, and that gulf is my buffer zone against cancer.
To twist a cliché, this opera ain't over until the guy with the trach sings.
Labels:
cancer,
Dr. B1,
jawbone biopsy,
Kaiser,
Obama,
radiation therapy,
Spider-Man,
tongue,
trach
Monday, August 17, 2009
Go West, young popster
Michael Jackson occupies nine slots in the Top 10 of Billboard's catalog album chart this week and another wave of Beatlemania is about to break out, with the re-release of all of their albums —the freshest one was recorded 40 years ago.
But you don't need to dial back to the last century to find thrilling pop music.
For the past 10 days, I've been grooving to Go West, the brand new album by L.A. singer-songwriter Adam Marsland. Go West is a 2-CD coming-of-age epic that has more yummy delights than you'll find at a Baskin-Robbins counter and is catchier than H1N1 virus ever will be.
Go West is out officially on Tuesday, but you can order it now at Adam's website or from Amazon.
Enjoy this video of "When I Lied to Everyone," the track that kicks off the second disc of the album:
Sunday, August 16, 2009
Making a list
Time to pop the cap of my Sharpie and flip to a fresh page in my legal pad. Tomorrow morning I have another appointment with Dr. B1 and I'm full of questions again.
I may feel listless, but tha morning. And at the top of my list of questions for Dr. B1 is asking him if the time has arrived for getting rid of my trach.
You can see a bit of my trach in the self-portrait I posted here. It's that white plastic thingy below my chin. The trach has been a fixture in my body since Jan. 14, when I had my first biopsy. The trach was installed to facilitate breathing since the swelling of my tongue was closing off my airway.
The one you see in the photo is what Dr. B1 calls the "high-profile" model; the removable tube sticks out further than the low-profile trach I prefer to wear. The only advantage that I can see to the high-profile model is that it gives me a place to hang my car keys.
The swelling in my tongue has since diminished, and a biopsy two weeks ago apparently cleared me of cancer, so I'm crossing my fingers that Dr. B1 will greenlight the surgery to remove the trach and stitch up my neck.
I'm leaving the decision in Dr. B1's hands. It's my neck that's on the line, but Dr. B1 is the guy who has shepherded me throughout this cancer ordeal, and I have a great deal of trust in him. There is still plenty of weirdness going on with my face, and it may make more sense to wait till I achieve progress in recovering mobility of my mouth and jaw before removing the trach.
My other major question for Dr. B1 is asking him what I should be doing to regain the ability to speak. After eight months, I'm ready to bow out of this vow of silence.
But my motives are not completely selfish. It would also be good for the planet for me to speak again.
You have no idea how many trees have fallen to keep me supplied in legal pads.
Friday, August 14, 2009
My cancer makeover
God knows that I've been yammering endlessly about how this cancer ordeal has affected me, but unless you have seen me in person over the past seven or eight months, you have no idea how my appearance has changed.
I guess it's time to post Before and After photos. The photo on the left is me in the summer of 2008. The photo on the right is me about 15 minutes ago.
Believe it or not, I am trying to crack a smile in the After self-portrait from today. But my mouth doesn't move that way these days; my face is more or less frozen in a permanent pout.
The After photo also reveals how challenged I am by the simple act of shaving. The lower part of my face has lumps where there was once a jawline and certain regions of my face are impossible to shave cleanly within the amount of time that I can stand looking at myself in the mirror.
With luck, I won't ever look as scary as I do in the After photo on this page. I'm keeping my fingers crossed that if I just mind my P's & Q's my old face —or a decent facsimile— may come back someday.
This face, however, may serve me well on Halloween.
Thursday, August 13, 2009
Star-crossed
I arrived way too early for the screening of "Passing Strange" at the Downtown Film Festival—Los Angeles (DFFLA) at the AT&T Center on Wednesday night. The movie was scheduled to begin at 8 and I was there at 6:30.
So I decided to just hang out near the entrance to the South Park high-rise and rustle through the newspaper while I waited for the doors to the theater to open.
I totally looked like a security risk to the festival organizers, who were running around in circles barking orders at one another. Because my face stings to the touch, I haven't shaved since Saturday and the high-profile trach that Dr. B1 gave me when I had my biopsy gives me the appearance of having a spear lodged in my neck, which I guess I do.
As if I didn't look suspicious enough already, I offered to serve as the designated coat rack for two friends who also arrived early but decided to get a bite to eat before the film. Their bulky coats, combined with my own vest, screamed "suicide bomber."
No film festival opening in Los Angeles would be complete without celebrities and the Downtown Film Festival was no exception. I smelled the first celebrity before I saw him. It was Seymour Cassel, puffing on a cigar.
Mr. Cassel and his date stopped just inches away from me, and the flashbulbs started popping. I should have stepped out of the range of fire, but I wanted to be first in line when the doors to the theater opened. I held my line near the red carpet and tried to look disinterested. (If this had been the Carnation Plaza at Disneyland and Mary Poppins and Bert strolled by, I would have been all over them with my Disneyland autograph book, but c'mon —Seymour Cassel?!)
During the excitement, someone snapped the picture below. I doubt Mr. Cassel was mocking my disability, but man, I would kill for a tongue with the range that his has.
Actor Seymour Cassel poses with guest Rebekka Redden at Passing Strange The Movie Opening Night 2009 Downtown Film Festival at the AT&T Center Theatre.
Wednesday, August 12, 2009
Another mute point
I joined the protest of Governor Schwarzenegger's radical cuts in AIDS services on Tuesday at Pershing Square.
While I couldn't rouse any rabble of my own, the marchers around me more than compensated for my silence. This fellow behind me was especially passionate.
Let's hope the governor's ears were ringing last night, and that they stay ringing until he reverses his attack on AIDS services.
AIDS Project Los Angeles to Challenge California Governor Over Unconstitutional Line-Item Vetoes
Tuesday, August 11, 2009
Heaven on the 32nd floor
One good thing that I can say about taking all of my meals through a G-tube is I'm well insulated from any salmonella outbreak.
American food manufacturers keep the FDA on its toes, as any peanut butter-eater knows. But as long as I pour my meals straight out of the tin can and directly into my G-tube, and mind the expiration dates stamped on the bottom, I feel I'm pretty safe.
Isosource is delivered directly to my doorstep, one month's supply at a time. It's been nearly a year since I have stepped inside any restaurant, and my visits to Ralphs happen only when I run out of bottled water or toilet paper.
My meals are also a tad dull. I actually can fall asleep while waiting for the Isosource to trickle down the G-tube, and I've got the stains on my sofa to prove it.
Wednesday I have a chance to break out of this routine.
A film I'm interested in is launching the 2009 Downtown Film Festival at the AT&T Center, and while trying to buy a ticket online, I got accidentally got stuck with a ticket for the film and a hoity-toity Gala dinner.
I had planned to swap the ticket for the Gala and replace it with admission to only the film. But then I read a description of the event. After the film tomorrow night ends, according to the festival's website, Gala attendees will be "whisked by high-speed elevator to the 32nd floor penthouse of the $35-million newly renovated high-rise complex [where] guests will enjoy catering by Rivera Restaurant, premium cocktails by Tommy Bahama Rum and beer by Karl Strauss."
I haven't been inside a penthouse since the '70s when I cracked one open at a newsstand. And a premium cocktail sure sounds more festive than the beige runny cocktail I feed myself out of a tin can every night. If Karl Strauss is going to all of the trouble of brewing a signature beer for Wednesday's event, why can't I open up my shirt, pull out my G-tube, pop open my syringe and ask a bartender for a splash or two?
He'd cut me off after 60 ml or so, but that should be enough for a mild buzz before that elevator whisks me back down to the ground floor and I take the Red Line home.
As for the catering by Rivera Restaurant . . . no, I can't eat any of it now, but that's why Tupperware was invented, right? Whatever goodies the catering crew is cooking up should stay stable in my freezer until I get my chops back.
So why should I go home after the movie tomorrow night and wet myself with Isosource again? Every now and then, you gotta punch the 32nd floor and live it up for a change.
-----
If you can, please join me at a protest at Pershing Square on Tuesday evening.
Monday, August 10, 2009
Pop quiz!
Who said:
"Life moves pretty fast. If you don't stop and look around once in a while, you could miss it."
There are two correct answers.
Saturday, August 8, 2009
What's up, Doc?
Sure coulda used my voice this afternoon.
I was driving along Rowena Avenue in Silver Lake when I had to come to stop at an intersection, even though I had a green light.
This guy was crossing Rowena against the red light. But it wasn't just any guy; it was The Walker.
If you spend any time at all in Silver Lake, you probably see The Walker regularly. He's a Silver Lake resident who walks 20 miles each day around the area, and an additional 15 miles each Wednesday, Saturday and Sunday evenings. When he's not walking, he likely doing push-ups (the L.A. Weekly says he does 4,000 per day) or seeing patients in his medical practice.
Usually, The Walker reads a newspaper while he walks. I don't know if this is an omen for the state of print publishing, but today The Walker was yakking on a cell phone, seemingly unaware that his decision to cross the street against the light forced traffic on Rowena to come to a halt.
Don't know what I would have said to The Walker as I waited for him to reach the other side of the street, but I'm sure I would have said something.
I'm giving this dude a new name. From this day forward, he will be known as The Jaywalker.
L.A. People 2009: The Walker - Marc Abrams
Friday, August 7, 2009
What's cooking?
Is it my imagination, or have the sunrises been a little pinker and the sunsets a tad rosier these past few days?
I've been twirling my G-tube like a gold chain from a zoot suit ever since Dr. B1 announced that radiation and chemotherapy spooked the cancer out of my system.
Cancer could return for a rematch, so I'm savoring my clean bill of health for as long as it lasts, and I hope that will be a very long time. As for now, Kool and the Gang's "Celebration" is clanging in my ears.
A dear friend in Florida joins me in my happiness by wishing me a weekend of "trashy movies or a long walk up and down the aisles of Amoeba buying that rare music find."
Hey, I can do that.
The Amoeba visit is a no-brainer: Today is payday. But even if it wasn't, my car's wheels intuitively turn into the driveway to Amoeba's parking lot every night when I pass the store on the way home from work. And it won't be long before I'll be spinning into Amoeba on my bicycle again.
As for the trashy movies, maybe I have a screw loose but I'm excited about seeing "Julie & Julia," Nora Ephron's film about Julia Child, starring Meryl Streep and Amy Adams, which opened today.
Yes, I know that most grown men would not be caught dead in a theater showing the food porn movie of the century, especially one that is opening opposite "G.I. Joe." I don't understand my attraction to this film. I can't even spell "soufflé" without first looking it up on Wikipedia.
What's even stranger is that I'm guessing that I am the only man in America with a G-tube who will pay to sit through a two-hour movie about one woman who wrote a landmark cookbook and another woman who attempts to cook all 524 recipes in that book in the course of one year.
The only "cooking" I enjoy these days is what I pour out of a tin can. I doubt that even Julia Child could craft anything palatable from the high-calorie, high-nitrogen, vanilla-flavored runny goop that Nestlé calls Isosource.
In these post-cancer days, anything tastes good to me even though all of it bypasses my taste buds.
Now if you'll excuse me, my tummy's rumbling. One chick flick coming up.
—
10:30 p.m. update: "Julie & Julia" can wait a day or two. Found a used "Tootsie" DVD at Amoeba for $2.99.
Thursday, August 6, 2009
Meanwhile, back on the HIV front . . .
If I had teeth, they would have been clenched tight when I clicked on the email I received from Dr. B1 early Wednesday morning.
Results from last Friday's biopsy were promised by Wednesday and I wasn't eager to get any bad tidings from my doctor. But even as I opened the email and read the words "Good news," my reaction fell short of unbridled joy.
Dr. B1 was telling me the best news I could have possibly expected to hear, but there was a cloud beneath that silver lining.
The night before, while poking around in my online medical records at Kaiser's member website, I saw that my latest HIV lab results were available. I clicked on that email and scrolled through the numbers. They didn't look good.
As I've been grappling with this cancer offensive, it looked as if my HIV had been running amok. According to the lab results posted online, my CD4 count had taken a deep nose dive, plummeting to 80 from more than 400 just seven months earlier.
I nervously clicked out of the lab results and sent a message to HIV provider: "My HIV numbers don't look very good," I wrote. "What do you think?"
The next day brought the good news about the biopsy, but my HIV situation weighed heavily on my mind.
Later that morning, my HIV doctor sent a reply to my email: "Your HIV is perfect," he wrote. "The HIV viral load is less than 48 copies, indicating complete suppression of the virus by the medications. Your overall 'infection fighting cell' number (WBC) remains slightly below your baseline, likely due to a residual effect of the chemotherapy. This is normal. It is not by any means at a critically low level. Because of your lower WBC numbers, your absolute T cell number is lower. However, the percentage of T cells (19 percent) is virtually unchanged from the values in January (18 percent).
"In other words," my HIV doc concluded, "your HIV is exactly the same, still doing great."
The lesson here is to let my doctor interpret my lab results before I leap to any conclusions.
So with HIV laying low, and cancer apparently having flown the coop, I can concentrate on my recovery while watching the undetectables, to paraphrase that doctor of rock 'n' roll, Elvis Costello.
It may still be some time before I can shed my trach and G-tube and talk and eat and drink through my mouth again —and there remains a possibility that the damage caused by cancer and radiation will be permanent— but I've come this far and I'm prepared to go the distance.
Labels:
biopsy,
chemotherapy,
Dr. B1,
Elvis Costello,
G-tube,
HIV,
radiation,
trach
Wednesday, August 5, 2009
Happy news
Dr. B1 just sent an email that makes me very happy:
"Dear Mr. Serchia: Good news. The biopsy showed no evidence of malignancy. That means at this point, we cannot see any more active cancer cells. The biopsy did show granulation tissue and inflammatory cells, which is likely a side effect of the radiation therapy. We will have to continue to watch that area as it is healing."
Thank you to everyone who has been hoping for this outcome all along. More later.
Tuesday, August 4, 2009
Retired in the U.S.A.?
My copy of the September-October issue of AARP: The Magazine arrived in Monday's mail, and sexagenarian Bruce Springsteen is its cover boy.
Based on the photo, I don't see any evidence that the Boss is shifting into geezerhood. Bruce's pants look just as tight as they did in the photo on the "Born in the U.S.A." sleeve 25 years ago. And the profile inside the magazine shows that Springsteen is as busy as ever, even if his on-stage leaps may not be as high as they were in 1984.
I'm still getting used to the World According to AARP. Once you reach the half-century milestone, you become bait for a feature in the AARP magazine, and the editors do love splashing celebrities on their cover. I'm relieved that AARP didn't hop aboard the Jacko bandwagon this month.
Still, it's a bit disorienting reading about Bruce Springsteen and flipping past full-page ads for Depends.
Monday, August 3, 2009
Lockdown in recovery
So Kaiser would know that they were performing a biopsy on the right guy on Friday, the clerk in the Admitting Department asked me to show my Kaiser enrollment card and my ID, and I had to make a $15 copayment, which I charged to my debit card.
Then I was told that I would not be allowed to carry my Kaiser card, my ID, my debit card or any cash with me into the ward where I would await surgery.
My plan was to slip my wallet into one of my sneakers and stuff my sneakers in the large plastic bag that the hospital provided for my clothing, along with a biography of Woody Allen I brought along to read.
No way, José, Jessica in Admitting told me.
I scribbled a note asking Jessica what options I had. She gave me two: I could hand over the items to a family member or friend, or she would store them for me in Kaiser's safe until I was discharged.
I arrived at the hospital alone Friday morning, and none of the people I saw hanging in the waiting area to the Admitting Department looked trustworthy enough to hold on to my Kaiser card, ID and debit card for the day. So I surrendered everything to Jessica, along with two $5 bills and five singles.
Jessica fished an envelope and a form out of one of the drawers in her desk. One by one, she documented on the form what she was placing in the envelope. She saved the cash for last, and counted the bills at least five times.
I should have sensed that Jessica wasn't the type of gal I could joke around with. But I tried anyhow. After she counted my 15 bucks for the third time, I wrote "Hey, I'm loaded!" in my note pad and held it up for her to see.
Jessica didn't smile. I almost thought that she was going to dig around in her desk for a Breathalyzer.
Then I was led into the hospital to prepare for surgery.
In the early afternoon, I woke up in the recovery room. The procedure had gone well and my vitals were stable, so the nurse said that she would call a friend of mine who offered to come pick me up to take me home.
My friend was at work in Pasadena, so I cracked open my book on Woody Allen to await his arrival. I asked the nurse if she could get my Kaiser card, ID, debit card and cash out of Kaiser's safe so I could leave as soon as my friend arrived.
About 15 minutes later, the nurse returned to my bedside. "Bad news," she said. "We can't get the safe open."
I looked at her blankly.
"We're trying to get it open," she assured me. "We're thinking of calling a locksmith."
The nurse disappeared again. Meanwhile, my friend showed up.
He had already been briefed about the problem with the safe, so he told me he would go downstairs and get a bite to eat and wait for the situation to be resolved.
Some time passed, and the safe was still jammed. My friend decided to head back to his job in Pasadena to wait for Kaiser to summon him back.
I dozed off reading about Woody Allen's growing up on Coney Island. Then I was stirred awake by a woman wearing a business suit and a badge. She appeared to have some authority.
"We're still working on the safe," she explained. "But it may take till Wednesday till a locksmith can open it."
"Wednesday?!," I wrote in my notepad. She nodded. I guess Kaiser's brand-new flagship facility was a $600-million fixer-upper.
More time passed. I tried to relax and read, but I kept thinking about how agitated Woody Allen would be in a situation like this.
Hours went by. The next thing I knew, I looked up and saw a nurse, the supervisor and a locksmith named Larry standing at the foot of my bed. From the beaming expressions on their faces you would have thought that they had jointly discovered the cure for cancer and wanted me to be the first one to know.
"Good news!" the supervisor exclaimed, holding up the envelope with my belongings.
My friend had already been summoned back to the hospital to take me home, making his second trip to Hollywood from Pasadena.
As we sat in rush hour traffic, I wrote a note apologizing for all of the time he spent away from his desk. I asked him what projects he was working on and he said that he was part of a team working on collecting samples from a comet expected to be passing by Earth in 2027.
Some people think that comet may actually collide with Earth. Maybe my friend is working on a mission to save the planet from destruction, and he downplayed the significance of his work to me, figuring that I had enough to worry about as it is.
I hope that the time my friend spent away from that project on Friday doesn't put that project behind. If that comet wipes out Earth, I'm gonna feel personally responsible.
Sunday, August 2, 2009
A sudsy summit
Cancer wants to have a beer with me.
His invitation popped up as a text message on my cell phone while I was driving around town on Saturday. Creeped me out; it really did. Almost made me crack up the car! I pulled over and parked to make sure that I read the message correctly.
Seems fishy, coming on the heels of the fiasco in Cambridge and Obama's "teachable moment" with that cop and Skip Gates.
Does it sound like a trap? Is this some kind of clever marketing gimmick, a mass text message sent to thousands of people at the same time? City of Hope and Kaiser have been doing a lot of radio buys recently, so maybe this is Cancer's way of striking back. I imagine Cancer would have a hard time buying a spot on KNX-AM, even with the Fairness Doctrine and all.
Or maybe this text message was directly solely at me. I have been dissing Cancer a lot in this blog. Maybe Cancer wants to give me his spin on what I've been spewing.
Or maybe Cancer wants to go mano a mano.
Call me crazy, but I'm tempted to take the bait. It would be quite a beer date. I'm confident that I can handle any questions Cancer has for me, and this would give me a chance to get Cancer on the record about things that I want to know.
At the top of that list: Dude, are you still in me or not? And if you are still lurking in me, when are you gonna pack it up and leave?
Oh, and I would love to see Cancer's reaction as I unbutton my shirt to pour my brew into a syringe attached to my G-tube.
Still, I don't want to act hastily. After almost 20 years of kvetching publicly about HIV, I've never gotten invited on a beer date with AIDS.
So it just seems odd.
I sat in my car, reading the message over and over, while tapping my fingertips on the dashboard. I didn't want to blow Cancer off right away, and risk pissing him off. Cancer went to the trouble to text me; Cancer deserved a timely response. So I hit Reply, and texted back to him:
"OK with U if I bring along Joe Biden?"
I'll let you know if I hear back.
Saturday, August 1, 2009
Under the knife again
Maybe Dr. B1 defused bombs for the Army in Baghdad before he took up head-and-neck surgery.
Because it could not have been easy on Friday in Kaiser's operating room for Dr. B1 to get his delicate instruments past my steel-trap jaws and deep enough into my kisser to capture some of the suspect tissue that lurks there.
If you want the Cliffs Notes version of today's post, here it is: T.G.I.Saturday.
I'd been jittery about how Friday's surgery would go ever since I learned early this month that another biopsy was in my future. While I won't know the results of my biopsy till next week, the procedure went well.
I remember the whole experience with Friday's surgery in stark, high-definition clarity —all the way up to the very beginning, that is.
What I mean is: I remember boarding the Red Line in Universal City shortly after 5 a.m.; I remember getting off the train at Sunset and Vermont; I remember trying to maneuver around a cyclist on the escalator ("I can't move!" he barked, a minute before he and his bike magically regained the miracle of movement at the top of the escalator); I remember walking through the doors of Kaiser's brand-new, $600-million medical center for the very first time; I remember checking in at the admitting department; and I remember asking a pregnant woman to move a sweater so I could take one of the last remaining seats in the waiting area.
I remember getting a plastic band wrapped around my wrist; I remember stuffing my clothes into a plastic bag and donning the standard-issue cap, gown and hospital booties; I remember the nurse unfolding a blanket fresh with warmth from the dryer over my body; I remember her thumping the back of my left hand so she could get a vein for an IV; I remember being interviewed by a steady parade of anesthesiologists and others on my doctor's team; I remember being asked for my name and birth date at least a dozen times.
I remember Dr. B1 stopping by my bed to greet me and review my charts, shaking my hand to say hello and squeezing my toes to say goodbye.
And finally I remember one of the nurses telling me that the medicine that she was feeding into my IV would help me relax. She then brought up the metal rails on my hospital bed and, with help from one of the anesthesiologists, pushed me down a series of winding corridors toward the room where my surgery would take place.
That last scene I've watched a million times on "E.R.," except the irony is, I've never seen a single episode of that show. (If I had mentioned "Ben Casey" instead of "E.R.," some of you might have clicked away to a blog by a younger, hipper cancer victim.)
I remember thinking that the ride in my bed to the operating room was taking too long, but maybe the nurses just push the bed aimlessly around the floor until they know that I am asleep. Because I don't remember entering the operating room. My next conscious memory is opening my eyes in the recovery room, having my vitals taken by the nurse who still thinks I resemble Ben Stiller. Maybe it's a Jew thing; that nurse kinda resembles Julie Kavner.
Dr. B1 says that he won't know the results from the biopsy till Wednesday, so I'm looking at several days of biopsy news hanging over my head.
I have plenty to do to keep me busy in the meantime. Seems like the anesthesia is affecting my ability to pee again, so baby-sitting my bladder and taking Flomax is priority No. 1 (I've used that pun before and I'm not ashamed to use it again).
Darning socks is the next task on my list.
The next time a doctor or anyone else feels like squeezing my toes, I may not be wearing brand-new baby blue hospital booties. I better be prepared.
Labels:
Ben Casey,
Ben Stiller,
biopsy,
cancer,
Dr. B1,
E.R.,
Flomax,
Julie Kavner,
Kaiser
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