Thursday, October 29, 2009
Luckily, my appointment with Dr. B1 Thursday morning went as well as I hoped it would.
I showed up early, Dr. B1 was on time, and he set up a hospital visit on Tuesday for more biopsies. On Friday I have to go back to Kaiser for the pre-op appointment.
I guess I was naive in thinking that this round of biopsies would be simpler than the other two that I have had this year. I've never had a biopsy under only local anesthesia; I've been given full anesthesia and hospitalized for each one.
I'm kind of curious about what I'm missing when I'm knocked out on the OR table with sharp instruments poking around the inside of my mouth. My only reference points are "E.R." and "M*A*S*H." (Come to think of it, Dr. B1 sort of resembles television's version of Hawkeye Pierce.)
I have five days to think about it.
Wednesday, October 28, 2009
Not only did I not get a biopsy on Wednesday during my scheduled appointment with Dr. B1, I didn't even get a chance to see Dr. B1.
I got stood up.
I've been stood up before, memorably in the early '80s when I invited a guy I had met over to my apartment for a home-cooked meal. He never showed, and he never found out how lucky he was. The quiche I prepared was rancid.
Two days ago, both my radiation oncologist told me that he would consult with Dr. B1 to bring him up to date on my situation and to share his recommendation that I get a biopsy, and fast. My maxillofacial surgeon also said he talk to Dr. B1, whose department is adjacent to his own.
But when I stepped up to the counter in the Head and Neck Department and presented my Kaiser membership I.D. and the postcard I received for my 2 p.m. appointment, the woman who checks in patients shook her head and said my appointment had been canceled.
I could almost hear the cancer cells in my face cackling with glee.
And not only was it a waste of my time to leave work and drive across town to Kaiser, my best buddy left work, too, to meet me at Kaiser for the appointment.
The woman at the check-in desk told us to take a seat so she could try and straighten things out. A few minutes later, a door creaked open and a nurse named Bernadette led us into a part of the Head and Neck Department I haven't seen before.
I thought I was going to be seen by another provider, which would have fine with me. Even a Doctor Doolittle would be able to look at my face and see that something is seriously wrong, and get the ball rolling on a new treatment plan, beginning with a biopsy.
Instead, Bernadette brought us into a conference room and asked us to take a seat at a long table.
She began by expressing her apologies about the canceled appointment.
I wasn't about to play Mr. Nice Guy and accept her apology with grace; I was peeved and wrote words to that effect in my note pad. My friend was ticked off, too, and his T-shirt bearing a Rolling Stones tongue logo with fangs made him seem even more menacing. So we played Bad Cop, Badder Cop: my friend expressing himself orally and me scribbling my complaints in my note pad.
But the goal was to get a biopsy and Bernadette could not do anything to make that happen —at least not today.
My friend and I parted in the lobby. As soon as I returned to my desk at the office, I shot an email to Dr. B1 asking for his next available appointment.
A few hours later, I was crawling down Melrose Avenue on my way home from work when I saw that I had missed a call on my cell. Seeing no TMZ reporters lurking about —they must all be staking out in Mandeville Canyon— I listened to the message the caller had left.
It was Theresa in the Head and Neck department, offering me an appointment with Dr. B1 at 7 a.m. tomorrow morning. I hurriedly sent a text to my friend asking him to call Theresa back and grab that slot.
So unless I oversleep and stand up Dr. B1, I'll be seeing him tomorrow, just 17 hours later than originally planned.
I give Dr. B1 a lot of credit for getting me in so quickly. But if my cancer truly has returned for another round, it's moving fast. If I have any chance at all at beating it —twice— my doctors and I have to move even faster.
Monday, October 26, 2009
Here's one thing you never want to hear a doctor say to you in a solemn tone during an examination:
"I wish we didn't have to have this conversation."
When my radiation oncologist Dr. Chen uttered those words to me on Monday, I crossed my fingers and hoped that his next words would be something like "But we've been hearing complaints about a patient with uncontrolled flatulence in our waiting room and we think that you're the problem, Mr. Serchia."
Instead, I heard the very words from Dr. Chen I hoped never to hear again for the rest of my life:
"It appears that your cancer may have returned."
What? I thought. Back for a rematch —already? Well, that was a short honeymoon.
It was less than three months ago when Dr. B1, my head and neck surgeon, reviewed the results of my last biopsy and declared that the procedure showed no evidence of malignancy.
"That means at this point," Dr. B1 wrote, "we cannot see any more active cancer cells."
Dr. Chen's appraisal of my situation today is based on several factors. One, the nuttiness going on with my face that is rapidly making me unrecognizable to myself is occurring in parts of my mug that were not exposed to radiation during my 33 sessions in winter and spring. Two, the results of the CT scan that was performed on me earlier this month look "suspicious" to Dr. Chen and to another doctor who looked at it today. And three, it is unusual to see symptoms such as I am presenting so many months following the conclusion of radiation therapy.
Dr. Chen's assessment does not necessarily reflect what is truly going on with me. Even he said so. The next step, Dr. Chen explained, is another biopsy, which I hope can be performed during an already-scheduled appointment with Dr. B1 on Wednesday.
That biopsy could support what Dr. Chen said to me today, or it could contradict him.
If the biopsy shows malignancy, however, Dr. Chen says that he is not sure anything more can be done.
Certainly no more radiation, at this point. And my chemo treatments were halted earlier than expected this year after my blood counts dropped, so I imagine that also might limit my treatment options.
I didn't know quite how to respond to Dr. Chen's news so I reacted honestly: I cried.
But my afternoon at Kaiser was not over yet. Next up was a visit with Dr. Y, my maxillofacial specialist, just down the block from the building that houses the radiation and oncology department.
It's possible that osteonecrosis is causing the problems in my jaw and face, but Dr. Y doesn't think that's likely, after looking at my CT scan and two thorough inspections of the tissue in my mouth. If I had osteonecrosis, Dr. Y explained, there would be evidence of exposed bone, and he can't find any.
And believe me, he looked. Today he and an assistant inserted tongue depressors in my mouth to force it open and then Dr. Y ran his finger along the interior of my mouth.
They weren't messing around. The tongue depressors were used as if they were the Jaws of Life, to the point that my mouth began to bleed. The bleeding didn't appear to faze Dr. Y but it scared the crap out of me, reader, and I wasn't thrilled about being sent on my way following the exam with a paper bag filled with gauze.
I didn't shake Dr. Y's hand at the end of the visit because I had blood on my fingers. But I know I must have come across to Dr. Y as grumpy and he probably is hoping that Kaiser doesn't mail an anonymous survey to me to complete about today's visit in Maxillofacial Surgery.
On Wednesday, I'll get a biopsy and then can decide what my next steps are.
Wednesday is also the day that Alice Cooper is bringing his Theatre of Death show to the Nokia Theatre. I had a killer seat in the sixth row of the pit in front of the stage, but I'm letting a friend use the ticket instead.
There's way too many creepy theatrics in my life now to expose myself to whatever fantasies Alice may have cooked up.
Saturday, October 24, 2009
My face is more swollen today than ever before.
It feels like my head is going to separate from the rest of my body and float high in the sky, followed by National Guard helicopters and CNN, before crashing in a meadow 50 or 60 miles away. If that happens, maybe it will turn out that this whole nightmare that has unfolded over the past year was just my body playing a hoax on me.
My painkiller isn't bringing any relief today, and it's too early in the day to take my cyclobenzaprine tablet to relax the muscles in my face. I guess I'm just gonna tough it out and spend another Saturday on the sofa or in bed.
Last night I brought that DVD of Robert Altman's "A Wedding" back to Amoeba to beg them to liberate it from the anti-theft plastic case that the cashier forget to remove when I bought the movie on Thursday.
I wrote a note and handed to the DVD to an Amoeba employee working the Returns counter.
He studied the hard plastic shell, which bore evidence of blows from my hammer and stab wounds from a screwdriver. Then he looked suspiciously at me. "They should have removed this case before giving you the DVD, sir," he said, staring right into my eyes.
I nodded, wondering if my contorted Famous Monsters of Filmland mug just makes me look like the kind of guy who would subject anti-theft plastic DVD cases to violence for sheer sport.
"Wait here," he told me, in a tone that suggested I was in trouble.
He returned about 15 minutes later, with an Amoeba staffer named Jimmy. I knew Jimmy was fairly high up on the Amoeba Music chain of command, so I braced myself for being accused of never buying the DVD in the first place.
Instead Jimmy apologized. He explained that the girl who rang up my purchase was brand-new to Amoeba's staff and that she hadn't been trained properly. After liberating the Altman DVD from the mangled case, Jimmy gave it back to me, along with $5 in store credit to compensate for my trouble.
I tried to smile, but my attempts at smiling these days just make me look angry.
Last night I watched "A Wedding." Richard Schickel, who tore Robert Altman apart in the Los Angeles Times on Thursday, doesn't know what he's talking about. Maybe my threshold for being entertained is low these days, but I liked "A Wedding" and Robert Altman is still one of my favorite directors.
On Monday, unless my head snaps off and floats away, I have an appointment with the maxillofacial surgery department and another in Radiation Oncology. Two days later, I'll be seeing Dr. B1 again.
I hope to hear at least some good news from my team of doctors. But even if they don't have any encouraging words and their bag of tricks is empty, I'll take that $5 credit at Amoeba and go shopping to ease the pain.
Going through what I'm experiencing builds strength and endurance. Heck, I'm bold enough now to revisit Altman's "Popeye."
Thursday, October 22, 2009
Having apparently nothing new to say about Gustavo Dudamel, the L.A. Times found space on the front page of Thursday's Calendar section to publish a review of a book about the late director Robert Altman, written by Richard Schickel, who knows a thing or two about film.
A more-than-casual Altman fan, I was drawn to the headline for the piece: "Altman lovers, read no further."
Schickel's first sentence was a grabber: "It appears that from the beginning of his career until almost its end (when illness slowed him), Robert Altman never passed an entirely sober day in his life." Schickel goes on to say many equally harsh things about the director —so many that I started to feel sorry for the guy, who of course is no longer able to defend himself.
So on the way home from work on Thursday, I pulled into the Amoeba Music parking lot and headed directly to the store's DVD section on the second level.
There I found a section of used DVDs of Altman's films. One of them, "A Wedding," was reasonably priced at $7.99 so I decided to buy it.
I brought the DVD to the counter, where a young lady named Lauren greeted me and rang up my purchase.
When I got home, I saw that Lauren had forgotten to remove the anti-theft plastic shell from the Altman DVD. Each cashier at Amoeba has a gadget at his or her station that strips the casing from the DVD so it can be used again.
I brought the DVD into my kitchen and dragged out my tool chest. First, I tried to pop open the case with my fingernail, but I couldn't pry its hinges apart. Next, I got screwdriver and started to stab the plastic to get it to break, but that didn't do any good, either. Then I used all of my strength to shatter the plastic with a hammer. That just created one unholy racket.
I thought about getting into my car and rolling my tires over the DVD a few times to see if that did the trick. That sounded a bit extreme, so I guess I'll just go back to Amoeba after work tomorrow and ask them to help me out.
If I could tell Richard Schickel about this situation and ask his advice, he might crack that slipping an anti-theft case around any Robert Altman DVD is a waste of good plastic. Just toss "A Wedding" in the garbage, he might say, and give the stinker the pauper's funeral that it barely merits.
In the hour so I was trying to crack open the DVD case, I peered through the smoky plastic and saw Desi Arnaz, Jr.'s name listed as a star of the film: an ominous sign. I guess Desi plays the groom, which leaves Mia Farrow, Carol Burnett or Lillian Gish as the woman Altman cast to play the bride.
Mr. Schickel, I just may owe you 125 minutes of my life.
Wednesday, October 21, 2009
A buddy at the office who lives nearby asked me if he could ride into work with me on Friday.
Of course, I told him he could. This guy has performed a ton of kind gestures over the past year of my infirmity —including taking me to the hospital one morning and staying there as I underwent surgery, and hauling eight cases of Isosource from his car to my kitchen— and I have barely done squat for him.
He's moving to New York this weekend, so this may be my final chance to do a good deed for him.
It'll be about a 30-minute commute, depending on when we get started. And now I'm freaking out about how I'm going to keep a conversation going with him that long.
If it's illegal for every Californian except Maria Shriver to text-message while driving, it surely can't be legal to make small talk in a note pad with your passenger while behind the wheel.
I've got two days to work this out. I think I'm going to write out a bunch of questions and comments on index cards and let him work his way through the stack while we head over the hill to work.
The cards could say things ranging from "I hope my car doesn't smell funny" to "Gee, that color looks good on you" and "When you get to New York, try to avoid accepting a job working for David Letterman."
The playoffs may be still be under way on Friday, so I can ask him who his picks are for the World Series. One team comes from his current home town and another team comes from his future home town, so he might have a lot to say on the topic.
If traffic is moving slowly, I could hand him a card asking him to read the funnies to me, or the forecast for highs and lows in cities across the nation.
On the other hand, maybe I'll scratch the small talk altogether and play him a song celebrating his move to the Big Apple.
"New York, New York" is an obvious pick. But at 6:30 in the morning, can anyone really stomach Liza Minnelli?
Better play it safe and go with Sinatra's version.
Monday, October 19, 2009
I shaved on Monday night, and I expect a badge for courage in the mail by the end of the week.
It was scary as hell because I had to use a mirror. For about 45 minutes, under a bright, unforgiving light, I subjected myself to the image that the rest of the world has to deal with around the clock.
If I had the cojones to take a self-portrait right now and post it on this blog, I'm sure that many of you would scoff, "You call that a shave?!" There are entire patches of whiskers on my face that I left alone.
My straight-edge razor just won't go to those places. The skin has hardened to granite and the surface is lumpy. Getting a clean shave in those regions of my face is like trying to landscape Mount Rushmore with a lawnmower.
Other parts of my face are clear sailing for my razor. The area between my upper lip and my nose —has that part of the body been given a name yet?— is still soft as a baby's behind and the area below my ears present no problem for the most part.
But my neck, chin and the area below my lower lip are a No Man's Land. And because I lack feeling in those places, I can't really tell when I nick myself until I see blood oozing out and making candy stripe-like swirls with the shaving cream.
I put the blade away for the night. In the morning, before heading out to work, I'll see if I can make some last-minute improvements before heading to the office.
I don't expect perfection, but it makes me feel better if I at least try.
And I better add Band-aids to my list of items to pick up on my weekly runs to Ralphs.
Sunday, October 18, 2009
Guess I haven't been fully reporting to youse guys about the recent changes in my face.
I never really thought of myself as a particularly bad-lookin' guy, but lemme tell you: These days, I am UGH-ly, as Redd Foxx might say.
My sister-in-law was in town this weekend and came by my apartment for a visit. We haven't seen each other since late spring, and she was a bit startled at the changes in my appearance when I greeted her in the lobby of my building. But she quickly adapted to my new face, and over the hour of her visit gave me a lot of encouragement.
Among other things, my sister-in-law reminded me how I haven't let HIV get the best of me after all these years. When she said that, I remembered that today marks exactly 18 years since I got my HIV and AIDS diagnosis. It's been easy to remember the date over the years because it also happens to be my brother's birthday.
Her visit was the best part of the weekend. Otherwise, I have left my apartment only to pick up a case of water and toilet paper, and grab the newspapers in the morning.
I wish I had skipped picking up Saturday's edition of The New York Times, however. It published a piece on the editorial page that summed up key plot developments in the early episodes of the third season of "Mad Men," which I won't get around to seeing until they're released on DVD next year.
I know I could watch the new episodes for free on Hulu but I'm stubborn that way. I'd rather wait several months so I can watch the third season on DVD rather than watch the new episodes on my computer now.
By next spring, maybe I'll forget that a secretary mauled a boss' foot while riding a lawn mower in the Sterling Cooper office, that Don Draper is visting his daughter's teacher at suspicious hours of the night, and that Salvatore Romano has been "unjustly and cruelly fired."
Each plot point seems pretty ugly. Maybe it's for the best that I save the third season for next year.
I've got all the ugliness I can stomach in my life right now, from the collar up.
Thursday, October 15, 2009
I got in line on Sunset Boulevard in front of the Hollywood Palladium on Wednesday an hour before doors were scheduled to open, and about three hours before Bob Dylan and his band were expected to hit the stage.
I didn't want to take any chances that I would be too far from Bob to see watch his expressions and capture the subtle ways he moves while performing. Dylan is an artist who doesn't include fancy-schmancy high-definition video screens as part of his staging —just another reason I love him— so unless you're up close to the stage or have binoculars, you miss the special ways Bob lifts his eyebrows, squints his eyes and sways his hips when he performs.
Rushing into the ballroom, I found a Palladium staff member and held up a note asking where the disabled seating was located. He gestured toward a cluster of seats stage left behind the enormous dance floor. I was confident that my trach, G-tube and distorted mug would be sufficient to grant me access to a seat in the disabled section but I would sacrifice the ability to see Bob up close. Instead, I ran to a vacant spot close to the security barrier in front of the stage, to the extreme left.
I didn't know if I was going to have the strength to stand for four or five hours, so retreating to the disabled section was my Plan B.
The front of the stage is where you find the greatest concentration of fanatics at any rock show —you know, the ones who follow bands from gig to gig, and refer to songs not by their names but by the initials in their titles— and on Wednesday I was stationed beside two stylish septuagenarian ladies chattering excitedly to each other. Either one would have a shot at a trophy in a Ruth Gordon look-alike contest. The women appeared to be longtime friends, but I overheard one of the ladies ask the other's name so they must have met just a few minutes before I arrived on the scene.
I opened a book to pass the time while waiting for the opening act to begin, but it was too dim to read, so I closed the covers.
One of the ladies turned to me and smiled, "I hope we don't get too wild for you!" while the other added, "Whoo HOO!"
Then the first lady looked closely at me. "Oh, you have a trach," she said. "I used to have one, myself. How long have you had it?"
I scribbled in my note pad. "About 10 months," I replied.
Her eyes seemed to twinkle. "You know, these days, I don't even think about the scar." She ran a finger along her neck. "You're going to be fine. You are going to be just fine."
The other woman repeated, "Whoo HOO!"
I wanted to find out how long these women had been Dylan fans but the light really was too poor to write in my pad, and besides, the security guard on the other side of the barrier seemed to take an interest in both of the ladies. So I watched them all flirt with each other while waiting for the show to start.
As for Bob, I had a clean view of his every twitch and gesture for the entire set. The guy is 68 years old and I'm guessing that he performs on a stage somewhere on this planet at least 200 nights a year.
Over the decades, I've seen Bob perform close to two dozen times and I'm sure I'll be seeing plenty more of him before he or I reach the end of our roads. Because like the lady said, I'm going to be just fine.
Tuesday, October 13, 2009
I've been complaining for months about a steadily eroding rubber cap to my G-tube.
When I showed the cap to my doctor last summer, he got Kaiser's Durable Medical Equipment Department on the phone and asked them to send a replacement to me. When I received that delivery, it was not the part that I needed but an entire solid-state G-tube that was useless to me. When a friend and a clerk in Kaiser's Member Services both called Durable Medical Equipment to straighten out the misunderstanding and get the proper part delivered to me, Durable Medical Equipment just sent an G-tube that was identical to the one that I already told them I couldn't use.
That second delivery was packed into a box the size of a microwave oven, though the G-tube itself is only about the size of a Red Vine.
Last week, I contacted the surgeon in the Gastroenterology Department who originally installed my G-tube last winter, and she agreed to take a look at it. I missed an appointment last week but showed up 30 minutes early on Tuesday to make sure I wouldn't blow my chance to be seen by Dr. Sekhon a second time.
I told my boss I should be able to handle this appointment and get back to my desk before my lunch hour ended. But as I stood at the check-in station to Gastroenterology, on the sixth floor of the building that used to be the main hospital, I wondered if I should have packed an overnight bag.
With one eye on the clock and the other watching a woman named Melva make multiple impressions from my Kaiser card, I could tell that I wasn't going to make it back to the office anytime soon. There was a form for anesthesia, a form for an advance directive and a form admitting me into Gastroenterology. After wrapping a band around my wrist, Melva handed me a plastic sleeve stuffed with papers and directed me to take a seat in the waiting area.
All this to get a rubber cap replaced?!
Once my name was called and I was led into the ward, things got even sillier. A nurse told me to take my shirt off and slip into a hospital gown, and then she disappeared. When she returned she was pushing a regulation-size hospital bed into the exam room.
I kicked off my shoes, climbed into the bed and hunkered down for the long haul —which means, I took a nap.
Dr. Sekhon woke me when she and the nurse came into the room.
Luckily, it looked like I wasn't going to need to be knocked out for the procedure to happen. I showed Dr. Sekhon the frayed cap on the G-tube and she said, "Oh, you just need a bumper!"
She told me she would be right back. Sure enough, in just a few minutes Dr. Sekhon returned with a fresh bumper. She popped the broken bumper off of my G-tube, slipped the new one on in its place, and said I could get dressed and leave.
Replacing that bum cap cost months of frustration, was far too complicated, and I think I burned some bridges in the Durable Medical Equipment Department, but my G-tube is good as new now.
And the next time I return to Gastroenterology I hope it will be to have the G-tube removed, not to have a spare part replaced.
Monday, October 12, 2009
Just about every amusement park and tons of other venues in Southern California are hoping to scare up cash this month by hosting Halloween events.
Universal Studios is offering Halloween Horror Nights; Knotts Berry Farm is doing its Annual Halloween Haunt; Disneyland has both of its parks decked out with Halloween decorations and is doing Mickey's Trick or Treat Party at California Adventure; and nightclubs are staging spooky events like Fred and Jason's Halloweenie.
Me, I've been a regular trick-or-treater at Mickey's bash for several years. I'm sitting out Halloween at Disneyland this year —not unless I hear that they're tossing cans of pumpkin-flavored Isosource into the bags of trick or treaters.
But I gotta wonder whether these Halloween parties might be starting to get a little stale —like a piece of candy corn you find under a sofa cushion at Easter— and not very scary.
Well, I have a smashing idea that I just might pitch to the suits at Kaiser.
Earlier this year, Kaiser moved its Los Angeles Medical Center hospital out of its former site on Sunset Boulvard and into a brand-new state-of-the-art facility next door.
I don't know what Kaiser's long-range plan is for the old structure but my idea would give Kaiser an edge over Cedars-Sinai, Childrens Hospital, City of Hope and all of the other facilities in L.A. that are competing for consumers like you and me.
Why doesn't Kaiser make the old Los Angeles Medical Center into a Halloween Hospital Hell?
In the old hospital's last days this winter, the facility already was looking a little dilapidated and eerie —as if the guys watching Kaiser's bottom line had made a decision to let the place slowly rot, since spectacular new digs were close to completion. So it wouldn't take much to make it into a real creep fest that would give even David Cronenberg the willies.
Besides, aren't hospitals inherently scary places to begin with?
They could start by splashing black paint on the walls, or maybe just board up all of the windows. Then they could collect all of the gurneys and wheelchairs that have fallen into disrepair over the years, and bring all of the surgical instruments that modern technology has made obsolete out of hibernation.
As each guest arrived in the first-floor lobby, he or she would be handed a blood-stained gown and ordered to strip. Then they would be strapped into a gurney or bed and pushed around the facility as hooded scapel-wielding ghouls leaped out from behind partitions and demanded to harvest their organs. Or maybe they would just be pushed into a waiting area and subjected to watching "The View" on a television hung too high to turn off or have its volume turned down.
I don't want to tip my hand on other spooky elements of my hospital horror show. But the evening could conclude in the check-out station as each patient is handed an outrageous bill, a death certificate or maybe a diagnosis of a terminal disease —all in good fun, of course.
Kaiser might find this idea to be at odds with its current marketing efforts, which emphasize living healthy and thriving. But my Kaiser Medical Center Horror Show could balance out that message, which frankly I find a little Pollyannish compared against the realities that many of us face.
I'll let you know when tickets go on sale.
Friday, October 9, 2009
If President Obama had time to send an 300-word email to me this afternoon telling me that he is "humbled" to be selected for the Nobel Peace Prize, I certainly should be able to find the time to update my own blog more than once every few days.
I'm sorry I haven't maintained my quota of posts lately, gang. If I may be so bold as to piggyback on the current emotions of the POTUS, I might even say that I am humbly sorry.
It's been a trying week.
The jury is out regarding whether the meds that the Maxillofacial Surgery doctor prescribed are going to successfully deliver a K.O. to the pain I've been dealing with lately. I've got 10 more days of taking the antibiotics and the muscle relaxant is such a tiny pill I can't imagine that it can travel to all of the places in my head that are causing me grief before it runs out of gas. Sleepless nights cut into the hour or so each morning I set aside for writing, and exhaustion sucks up much of the time in the evening.
Continuing in the kvetching vein, I missed the appointment with the surgeon who said she'd look at my G-tube, due to conflicting work commitments, and I ran into a snafu in the pharmacy getting a refill on the pain meds that the ER prescribed last Saturday.
Right now I'm debating with myself about whether I should catch a screening of "Citizen Kane" tonight at the Linnwood Dunn Theater in Hollywood. The theater is on my way home from the office, and I can kill time at nearby Amoeba Music before the movie begins. It's been a while since I've seen "Citizen Kane" and the Linnwood Dunn may be the finest theater in the city that's open to the public. It also has the distinction of being located in the building that used to house AIDS Project Los Angeles in the mid- to late 90s, so it's always a treat to go there, dial back the years and daydream.
It doesn't need to be a late night for me. An hour of "Citizen Kane" is worth 10 hours of "Zombieland." Besides, I already know that Rosebud was Kane's sl— aw, I don't wanna spoil it for you in case you never saw the film.
Looking ahead, Bob Dylan swings into town next week for a three-gig engagement at the Palladium. Under normal circumstances, I'd be holding tickets for all three nights but I'm going only once.
I'd be a fool to walk out on Bob Dylan, so I'm counting on both him and me having a good night next Wednesday. And when he asks "How does it feel?" I want the pain in my head to be the furthest thing on my mind.
Wednesday, October 7, 2009
The "G" in G-tube might as well stand for "goner."
Tethered to my tummy nearly precisely 10 months ago, my G-tube has gradually shown signs of erosion. I chalk up most of this erosion to normal wear-and-tear but many nights I wake up and find my G-tube wrapped around my legs or wedged between my thighs so who knows how I abuse the thing in my sleep?
A few months ago, I showed my HIV doctor how the rubber cap to the tube was wearing thin, and he said he would do his best to make sure that I got a replacement cap.
If the part broke off, there would be no way to seal the tube between feedings. Wherever I went, I would leave a runny trail of half-digested Isosource, which might make it easier for authorities to track me down if I ever disappeared but otherwise would just create an unholy mess.
A few days later, Kaiser's Durable Medical Department dropped off a package at my door. Inside was a complete G-tube, not the part that I needed. And it was a different style from my G-tube, so I couldn't just clip off the cap and toss the rest.
I put off dealing with the problem far too long, but last week, I paid a call in person at Kaiser's Member Services Department and explained the situation to a handsome guy named Laurent who presented himself as highly competent. I showed the bum rubber cap to Laurent, had him examine the new G-tube that was useless to me, and explained to him that if the frayed rubber cap finally broke, I would have no way of eating or taking my meds.
I'm confident that Laurent understood what I needed, but he had to work with the Durable Medical Equipment Department. So to minimize the possibility that Durable Medical Equipment would botch up the request, I also enlisted the advocacy of a speaking friend of mine.
Well, Durable Medical Equipment told my friend that they had shipped the exact equipment that my doctor had ordered, and as if to underscore their insistence that they had not erred, they delivered another G-tube just like it.
In desperation, last Friday I emailed the surgeon who implanted the G-tube in my belly 10 months ago and explained the situation to her. Tomorrow, she and I have set up a rendezvous in the procedure area of her department.
If anyone can solve this problem, I think the suregon can. I don't know why I didn't start with her in the first place, except it does seem to be a function below her pay grade.
I just need to keep the cap from snapping off for three or four more feedings.
Today, I've got rosary beads around the G-tube to ward off malevolence. It probably won't do me any good, but it can't hurt.
Monday, October 5, 2009
Don't know if it's safe to be blogging right now so I better be brief.
I picked up two new prescriptions during my visit to Kaiser's Maxillofacial Surgery Department today —it's time to think seriously about building an annex to my medicine cabinet— and one of them is not to be used while operating heavy machinery. My Mac is about 58 pounds and my computer monitor must be at least 30, so I better just hit the highlights of today's visit and crash on the sofa.
As usual, I arrived for my appointment this afternoon with a long list of complaints already written out. Today's list had 12 separate issues to discuss with Dr. Yafai, the doctor/dentist who saw me today, and we covered them all to my satisfaction.
I had been anxious that today's appointment would have led directly to surgery on my jaw. So it was a relief to hear Dr. Yafai tell me that surgery on my jaw is something that should be done only as a last-resort measure: if I was experiencing pain that was more than I could bear, or if infections in my jawbone were out of control.
If Dr. Yafai's hunch is correct, surgery may not be necessary. After a good look into my mouth, Dr. Yafai told me that he doesn't believe that my jawbone is infected, but tissue in my mouth may be, and that's what may be causing some of my discomfort. So he prescribed clindamycin, an antibiotic, to treat any infection. The other med he prescribed, cyclobenzaprine, is a muscle relaxant that should ease the pain in my mouth.
I hope that these meds do the trick because jaw surgery scares the heebie-jeebies out of me. It would involve grafting bone from my leg onto my jaw, and Dr. Yafai said that it could trigger a number of complications that might only make things worse.
Before the end of the month, I'll be seeing Dr. Yafai again, as well as Dr. B1, my head and neck surgeon, and there's another visit with radiation oncology coming up as well. Dr. Yafai also ordered a CT scan of my facial bones, so I'll be making another trip to the imaging department again.
So I feel as if I'm making some progress, even though my immediate goal is managing pain, rather than recovering my voice and resume eating through my mouth.
Now if you'll excuse me, I better shut down this heavy machinery before the cyclobenzprine kicks in and somebody gets hurt.
Sunday, October 4, 2009
I've been told that I have a high threshold for pain.
Well, I shattered that ceiling into 18 million pieces on Friday night when the pain in my mug and my head became just too much to bear and my routine Extra-Strength Liquid Tylenol remedy couldn't make it go away and let me get some sleep.
To make things worse, I got a good look in the mirror and saw that my facial muscles were really wreaking havoc on my appearance.
I was tempted to blame this all on the full moon, but in an email to a friend I mentioned that I was considering going to the emergency room. My friend, who is something of a wise guy but also genuinely wise, replied, "If your body is telling you go to the ER, don't ignore it."
So early Saturday evening I threw my things together and drove to the emergency room at Kaiser Sunset.
I was expecting to walk into a room filled with wailing babies, weekend athletes with sports injuries, a gunshot victim or two, and Kaiser patients using the ER for treating conditions best addressed by their regular doctor. I expected a long, miserable wait and nearly tossed a blanket and a pillow into my backpack before leaving the apartment to go to the hospital.
Instead, practically no patients were sitting in the emergency room when I arrived, and there was no one in line ahead of me. I sailed through the check-in process and the following station, where I handed a note explaining my condition to a Kaiser clerk. And less than a minute after picking a seat in the waiting area, I heard my name called.
A nurse in Winnie-the-Pooh scrubs led me to a room where she took my vitals, and asked me how severe my pain was on a scale of 1 to 10 (I told her 9, because I think 10 should be reserved for women in labor).
Minutes later, the nurse led me to a private exam area, handed me a gown, and told me to change out of my street clothes and wait for the doctor.
About 15 minutes passed before the attending ER doctor arrived, but I think that was because he was reviewing my electronic medical chart, which has expanded to Dickensian length over the past year.
After Dr. Schoeman asked me questions about how I was feeling, he tried to pry open my mouth with a tongue suppressor, with little success. He said he saw in my chart that I had been seen by the Head and Neck Department earlier in the week, and would be having my first appointment in Maxillofacial Surgery on Monday. And then he said he would try to get in touch with Dr. B1 to let them know that my pain had suddenly escalated and to ask his advice.
He didn't reach Dr. B1 but was able to speak with another doctor in the Head and Neck Department. They decided that the best thing to do was to give me a prescription for pain and release me.
I was happy with that. I was even happier that the ER adventure —from the time I left the apartment to the time that a pharmacist handed me my prescription— took less time than the average wait for a table at Cheesecake Factory.
The prescription is for acetaminophen —the same ingredient used in Tylenol— boosted with codeine. I'm leery of taking any drug that is celebrated in a Rolling Stones lyric ("Torn and Frayed," 1972), but the codeine does seem to dull the pain and make it possible to sleep.
Monday after work, I'll be taking a new step in this adventure: seeing what the Maxillofacial Surgery Department can do for me.
I know I should try to shave to look as presentable as possible for the office tomorrow. But frankly I don't have the courage to spend any more time staring into the mirror and besides, the surface of my facial skin right now goes places where no razor can follow.
Don't know what Lon Chaney would do in my situation. I'm just going to keep taking my meds and hope that Maxillofacial Surgery has a miracle or two up its sleeve.
Thursday, October 1, 2009
All of the "Mad Men" I've been watching lately is starting to affect my behavior.
Over the past 10 days or so, I've gobbled up all 13 episodes in Season One and all 13 episodes in Season 2. I could kick myself for tearing through the first two years of "Mad Men" so greedily. Now I have to stew for about nine months and wait for the third season —now being broadcast on AMC— to be released on DVD, unless I decide to genuflect and kiss the ring of Time Warner Cable so I can watch the show on AMC each week.
I have no desire to add another monthly expense to my budget. So the best I can do to keep the "Mad Men" vibe going is incorporate elements of the show into my life.
I set up a bar in my office this week, just like all of the boys of Sterling Cooper have in their offices. Instead of liquor, however, my bar is stocked with Extra-Strength Liquid Tylenol, which I need to make it through my workday just as much as Don Draper and Roger Sterling and all of the rest need gin and scotch to get through theirs.
I have a feeling that if anyone at Sterling Cooper drank a cocktail the cherry-red color of Extra-Strength Liquid Tylenol, he would be considered to be a little light in the loafers. Maybe my co-workers think that about me at 11 and 4, when I take a pause in my day to pour myself a shot glass of Tylenol and pour it down my G-tube.
They haven't seen anything yet. This is only the beginning of the Don-Draperization of Paul Serchia. Over coming weeks, I plan to swap my backpack for a leather briefcase and get fitted for a hat. I may even start wearing ties and raincoats, dye my hair jet-black and slick it back with greasy kid's stuff and aggressively utilize my eyebrows to convey emotion.
Today I'm bringing an ice-bucket into work, so I can serve Extra-Strength Liquid Tylenol chilled when visitors wander into my office, and swizzle sticks, so I can stretch the shelf-life of each bottle of Tylenol by diluting it with water before I offer it to guests.
Extra-Strength Liquid Tylenol ain't cheap, not even when I buy the CVS knockoff. Don Draper drinks only the good stuff, but he has an expense account and would not last two days working for a nonprofit, like I do.
If Draper himself ever walked into my office, hopefully I would be able to keep it together long enough to pour some acetaminophen in a shot glass and place it in his hands.
Prodigious consumption of Tylenol wouldn't do Don Draper's liver any favors, no more than it's doing mine. But that's what keeps us Mad Men just a little mad.