Thursday, December 31, 2009
If my neighbors are paying any attention at all, they may be thinking that I'm turning tricks in my apartment these days.
What else could explain the steady flow of unfamiliar gentlemen and ladies showing up at my doorstep this week? Since my family left on Monday morning, the rapping at my door has been incessant.
It began on Monday with a visit from a social worker in Kaiser's hospice program. Shortly after she left, a guy delivering medical supplies arrived, followed closely by a man bearing a plain paper sack filled with drugs from Kaiser's pharmacy. Monday night, a burly fellow with arms the size of tree stumps brought me more medical supplies in three separate trips. Early Tuesday morning, a friend came to visit, and soon after he left more medical supplies showed up. Wednesday, still more medical supplies were delivered, and midday a Kaiser nurse case manager stopped by. Thursday, I was visited by another friend, accepted a FedEx package and a Kaiser physician paid a call on me.
I used to have a reputation as the guy in the building who kept pretty much to himself, leaving home early in the morning and coming home late at night. Now my lights burn nearly around the clock and my front door swings open more than the turnstiles at Union Station spin.
And the feng shui of my home is on the defensive. With all of the new supplies being hauled in, my apartment is beginning to resemble the set of General Hospital.
Let's start with the big oxygen tank that now dominates my bedroom. It's steel; it's industrial green in hue; it stands as tall as a Christmas tree. The thing looks like the missile that Slim Pickens rode bareback in Kubrick's Doctor Strangelove. Yes, this oxygen tank may save my life some day, but couldn't it be designed to fit in with the contemporary single man's bedroom decór? Painted a pale pastel, it wouldn't scream "A SICK PERSON SLEEPS HERE!!!" nearly so loud.
And then there's the oxygen tank's sidekick: a whirring machine on wheels that has the height and girth of R2D2. This device may ultimately turn out to be a life saver too, but wouldn't it be just as effective at half its size?
I can't kvetch much about a few additional pieces that also arrived this week.
The suction machine that arrived on Wednesday doesn't take up that much space. Even better, it's portable and includes a discreet carrying case that would allow me to take it with me the next time I shop at the Grove and think that I may need to clear secretions from my trach while I browse the racks at Abercrombie & Fitch.
The LifeLine device that will enable me to contact outside assistance in the event of an emergency is as compact as it is essential.
And the air mattress doesn't look like it's going to take up a lot of square footage, once I figure out how to blow the damn thing up.
My Kaiser case managers are always cautioning me about accidentally falling in my apartment with no one around to help me up. But the way I see it, each new medical gizmo that gets dragged into my home only raises my tripping potential.
And I've only been part of this program for less than a week. Who knows what surprises the next delivery man has in store for me?
Tuesday, December 29, 2009
Man, I really cleaned up on Christmas loot this year.
In addition to being visited by Santa Claus sometime after going to bed on Christmas Eve, at 9 a.m. on Christmas morning, a woman I'll call Susie Claus dropped by.
Susan is my nurse in Kaiser's hospice program, and I'm one of that program's newest patients. When Dr. B2 referred me to the hospice program after pulling me off my cancer treatments, I didn't really expect the wheels to turn very quickly —certainly not as quickly as they have.
This hospice team ain't messin' around.
I met with Susan in my home for nearly three hours on Christmas Day; had a long meeting with Vicki, the social worker on Kaiser's team on Monday afternoon; and on Wednesday the physician overseeing my case is coming by.
Getting this much attention from a huge HMO like Kaiser during a holiday week is pretty extraordinary, in my book.
During Susan's visit, she performed a handful of miracles while making calls on her cell phone on my living room sofa. Watching her work was dizzying.
She got me access to five new medications to manage pain and cope with some of the side effects from cancer I have been experiencing, and we were able to pick up each new drug on Christmas at one of Kaiser's pharmacies. I'm not prepared to break the seal on the morphine bottle but I sure was glad to get my hands on that constipation prescription.
After I told Susan that I often experience shortness of breath as I move around my apartment, she facilitated an order for an oxygen machine to keep at home. She also ordered an air mattress so I can avoid getting bed sores, and a suction machine so I can clear the secretions that build up in my throat more effectively. (Susan warned that the company responsible for delivering the equipment is notoriously unreliable, and sure enough, I'm still waiting to come through, three days later. But at least I know that relief is on the way.)
Vicki, the social worker I met with on Monday, is every bit as efficient as Susie Claus. During the two hours we had together, she helped me advance some other key needs, including a MedicAlert bracelet to summon for help in case of an emergency and special telephone devices to help me communicate better despite my speech and hearing impairments. And Vicki has been nagging the medical equipment company to deliver the items that I need.
I'm not going to pretend that everything is beautiful these days in the Life of Paul. Any way you look at it, it does suck to be sick enough to require hospice care. There are other practical matters that I'm addressing that I'd just as soon rather not face.
But I know that these things have to get addressed. With the support of Kaiser's team and my family members and friends, I'm tackling these issues, too.
Monday, December 28, 2009
Apologies for neglecting this blog, gang!
A bevy of family members swept into town last week for the holidays, so my energies were directed toward them. But they all have gone back to Tennessee, Colorado, Arizona and San Diego now and I'm settling back into my routine, so I'll be posting the latest news over the next day or so.
Here's a photo of me and my dad, who spent the past four nights with me. I hadn't seen Dad since my mom's funeral in September 2007 so it was wonderful being with him again.
As Dad left my apartment to head to LAX this morning, he turned around, gave me a thumb's up and said "You're going to make it, Gus. You're going to make it."
Dad, I'll try my best not to let you down.
Wednesday, December 23, 2009
Just when I thought I had seen it all, my trach showed me Wednesday morning that I still have a thing or two to learn about living with fake body parts.
After climbing into bed around 11 on Tuesday, I tossed and turned for hours, unable to get comfortable enough to sleep.
For one thing, Dr. B1 had re-dressed the wounds on my face on Tuesday afternoon, and I didn't have a lot of confidence that the bandages were going to hold through the night. He held the dressing in place with a single strip of tape; when I replace my own dressings, I all but lock the bandages into place with long strips of duct tape.
Also, Dr. B1 replaced my trach collar with one that felt differently around my neck and I was having a hard time getting used to it.
Finally, my left eye was popping open every five or 10 minutes, which kept a dream that I was having about Jon and Kate Plus 8 from getting under way.
I finally drifted off to sleep around 3 a.m.
About an hour later, I woke up after my nose rolled over something hard and smelly. To my alarm I saw my trach on my pillow —not only the removable plastic cannula that fits inside the trach, but the trach itself. And the trach collar was dangling from my neck.
I bolted out of bed, ran to the bathroom and put all of the stray pieces back inside my neck, where they belonged.
What happened? Beats me, gang.
Maybe one of Jon and Kate's Plus 8's brats were monkeying around with the trach in the dream that I had. Or maybe I had removed the trach to slip under my pillow so that the Trach Fairy would come visit.
I haven't checked the commodities listings for Fake Body Parts lately; a trach with less than a year of wear might yield five or ten bucks in today's Fairy market.
Whatever it was, I can't risk lose any of my fake organs just because I can't get to sleep at night and start clawing at my body in a reckless, willy-nilly fashion.
Tonight, I'm giving my G-tube the duct tape treatment.
Monday, December 21, 2009
The collar that holds my tracheotomy began the day gray, but during the course of the day it caught a whiff of some holiday spirit and turned as red as Rudolph's nose.
I first realized what was happening as I was caught up in episodes from the fourth season of Seinfeld. I thought I would just watch one or two while I fed myself lunch but I couldn't stop watching, and before I knew most of the afternoon had gone by and I had spent all of it in Seinfeld's universe.
Around the time that Kramer and Jerry accidentally dropped a Junior Mint into the surgical cavity of Elaine's boyfriend during an operation, I felt dampness on and below my face. I ran my hand along my neck and when I looked at my fingers they were red and wet.
When I got to the bathroom mirror I realized that my trach collar and half of my face was drenched in blood flowing from the wounds resulting from my biopsies on Nov. 3.
After weeks of persistent bleeding and a few visits to my doctor for help, it finally looked like these wounds were beginning to heal. Then my head suddenly began to swell in new directions last week, stretching out the skin in my face and interfering with any healing that was under way.
Today's episode of bleeding was the scariest yet.
I changed all of the bandages —about 10 bandages of varying sizes are needed to cover the affected area— and mopped up the blood that had trickled down my neck to my chest and stomach.
And then I hopped on to the computer and e-mailed my doctor to beg for help. It's crazy to still be dealing with wounds that are stubborn to heal six weeks after the surgery took place.
Maybe I should follow Kramer's lead and plug up the holes with a few Junior Mints.
Saturday, December 19, 2009
I gotta envy that animatronic Abe Lincoln that returned to Disneyland's Main Street Opera House the other day.
The life-size robot of our 16th president sure looks lifelike —far more lifelike than I look or feel these days.
Linc blinks, which is more than I can say for at least one of my eyes.
Sometime over the past few weeks, my left eye stopped blinking. My doctor says that it's a consequence of cancer on my central nervous system.
An unblinking eye can cause vision damage, so my doctor immediately prescribed eye drops so I can get some moisture in my eye and an ointment to help me keep the eye shut when I sleep.
He said that I can't overuse the eye drops. At the rate that I've been dropping the lubricant in my eye, the 15 mL bottle he prescribed will be depleted in no time and I'll be back at the pharmacy for a refill. Maybe I'll get a keg of the stuff.
As for the ointment, my doctor says that I should use it to "sort of glue your eye closed" when I go to sleep at night.
I see potential for all kinds of disaster. If one eye is asleep and the other glued shut, how will I be able to aim at the toilet when I get up during the night to pee? What happens if I roll my head during the night and glue my eye to my pillow? What if mistakenly grab the tube of eye ointment when I need to apply Preparation H instead?
I guess all of these issues will resolve themselves over time, and using the new drugs will become second-nature to me.
What really worries me, however, is the possibility that this new symptom may spread to my right eye.
With two unblinking eyes, and a red-and-white dress, I'd be a doppelganger for Little Orphan Annie.
Thursday, December 17, 2009
After just four treatments, my oncology doctor has yanked me off the drug Erbitux.
I had been counting on Erbitux to succeed where radiation and chemotherapy had failed, but toward the end of Wednesday's treatment in the oncology department, Dr. B2 told me that it's not producing the results we need in order to knock cancer out of my system.
Erbitux never really looked promising to Dr. B2, but he thought it was worth a shot. At this point, he said to me on Wednesday, continuing with treatments probably would do more harm than good. I didn't press him on that point, although in hindsight I wish I had.
Dr. B2 said that he was handing me off to the hospice program, and I'm waiting for a call from hospice now.
A lot of "what if" scenarios have been piling up in my head lately and airing those concerns with a social worker seemed the best thing to do. A friend called the Social Work Department on my behalf, and facilitated a visit from one of the staff during Wednesday's Erbitux infusion.
At the head of my list of concerns is what to do about an advance health care directive. Up till now, making decisions about my health care has been my responsibility, but I need to think about what I want to happen if I'm not able to make decisions on my own. The social worker gave me all of the information and legal forms to complete.
She also gave me the Department of Motor Vehicles application for handicapped parking privileges. As hard as it is for me to admit, I can really use a handicapped parking placard; it's not uncommon for me to get winded after walking from one room of my apartment to another.
I wish I could post happier news on this blog today —after all, 'tis not the season for tidings of gloom.
All I can say is no one knows what will happen next.
Tuesday, December 15, 2009
Not feeling up to developing complete thoughts today, but here are some scatter shot observations ricocheting in my head:
- Eek! My cancer has spread to my Facebook page. From my home computer, I'm not able to post or comment on Facebook. I'm even more mute there than I am in real life.
- I watched "The Wizard of Oz" last night with the English subtitles. Turns out I have been singing incorrect lyrics for the Munchkins' independence song for my entire life.
- I was no fan of Dick Cheney during the Bush years, but in hindsight the candidates that the Democrats picked in 2000 and 2004 —Joe Lieberman and John Edwards— turned out to have Prince-of-Darkness mojos of their very own.
- I miss getting up and going to the office every morning, but the midday naps I've been able to take lately just can't be beat.
- Regarding that problem I'm having with Facebook, I don't know if I should invest time and energy in restoring my Facebook voice, or whether it would be smarter to wait for Facebook to go the way of MySpace.
- My employer erased my voice mail greeting on the office line, which I recorded long before losing my voice last year. If you have any recordings of my voice, you got yourself a bona fide collectors item.
- Given all that I should be thinking about and doing, is watching old Seinfeld episodes from sunrise to midnight a wasted day?
- The album title I chose for my car's vanity plate almost 10 years ago has been named the Best Album of the Decade by Rolling Stone magazine.
- I finally figured out a way to sleep that prevents me from rolling over on my side and hurting my bum rotator cuff, but if you were to walk into my bedroom in the middle of the night, you'd think that you had stumbled upon a crime scene.
- Now that I know that my left eye does not shut or even blink, my new nickname for myself is "Cyclops."
Monday, December 14, 2009
I'm getting the feeling that cancer has gotten into the cockpit of my brain and is messing with my control panel —spinning dials, flipping levers and punching buttons, just to create mischief.
A few friends mentioned recently that my left eye is blinking at a different rate than my right eye. Well, while replacing the bandages on my chin Monday morning, I stared at myself in the bathroom mirror and realized that the left eye does not blink at all.
In fact, unless I shut my left eyelid with my fingers —you know, the way priests and doctors do in the movies when they realize that someone is dead— I can't close my left eye at all. This is really creepy, gang. No wonder I have trouble sleeping.
And it explains another weird symptom I've noticed over the past few weeks: every so often, my left eye has been tearing up. I figured I was just becoming a big crybaby but now I'm thinking that cancer is just playing with the knobs in my brain that control my left eye.
It's not only my eye that is acting up: I'm also essentially deaf in the left ear now. That side of my face has been growing gradually numb, and now it has knocked out half of my hearing ability.
Yet another symptom is probably not cancer's doing but a side effect of the Erbitux treatment that I began three weeks ago. At nighttime, my facial skin gets slightly greasy, and I feel slight bumps along the sides of my nose. This must be the onset of the rash that Dr. B2 told me that I can expect as a result of my new treatment.
All of these things have been happening at a brisk pace, which makes me dread what new surprises may be lurking around the corner.
Christmas is in about 10 days, and family members from three states will be coming to Los Angeles to celebrate. I've got just one item on my list for Santa Claus: Don't let cancer get in the way of me having a good time with my family on Christmas.
It's a lot to ask, but not too much to hope for.
Wednesday, December 9, 2009
My third Erbitux treatment on Wednesday was happily uneventful.
There's not much I can write about sitting in a Barcalounger for four hours tethered to an IV drip. The drive home from Kaiser, however, was another story.
I decided to swing by Skylight Books in Los Feliz to see if copies of San Francisco Panorama had arrived yet. The Panorama is an actual newspaper published on Monday in the Bay Area and as soon as I read about it I knew I had to own it, despite its $16 price tag. (Sound a tad high to you? Eh! —it won't be long before the Sunday New York Times costs just as much.)
Parking is always tough on Vermont in Los Feliz and I didn't even have change in my pocket to feed a meter. But a loading zone space right in front of Skylight Books was open as I approached the store. I figured I could easily get away with sneaking a few minutes in a loading zone without getting a ticket, so I pulled over to the curb.
As soon as I shut the car door, I got a queasy feeling that something was not right. Peering through the window, I saw my car keys still hanging in the ignition, and both doors to the car were locked.
I'd like to blame the Erbitux for my foggy-headed behavior but there are readers out there who would never let me get away with that. Truth is, this type of ditziness has been my calling card for about half a century.
I know myself well enough to always make sure that my AAA dues are paid up so they can bail me out in situations like this.
I walked into Skylight and stepped up to the counter. First I handed a note to a woman named Mary asking if they had Panorama in stock yet (Mary said that they didn't) and then I handed Mary a second note asking if she would mind calling AAA for me so I could get into my car.
Mary said she was happy to help me out. I handed her my cell phone and my AAA card and a note with all of the details that AAA Roadside Assistance asks when a member needs help. (I'm way too familiar with how this process works.)
Less than 15 minutes later, a AAA driver pulled up and unlocked my car.
Didn't even get into trouble for illegally parking in the loading zone. I got home in time to stay on my feeding and meds schedule and to get in a long nap to sleep off the Erbitux.
Sometimes I am far more lucky than I deserve.
Tuesday, December 8, 2009
Cancer seems to be working full time to defeat me, so I have to work double shifts to stay one step ahead.
And that doesn't leave any room in my life for my job.
Although my medical leave officially began last week, the reality of my situation is only beginning to sink in now. On Monday, I went into the office for a few hours to wrap up some loose ends and give my boss all of the passwords that she needs to access various programs on my computer. (Tip to the TP community: Avoid creating passwords like "So-and-so is a poo-poo head" even if that helps you remember them.) And I also had to turn in my key to the building: an act that shredded my heart just as much as it liberated me from my job responsibilities.
When I left the office on Monday, I tiptoed out the back door after sending an email announcing my leave. Despite everything that has happened, there's a part of me that hopes I'll wake up one morning and be completely healed and ready for the labor force again.
On Tuesday a work colleague and friend I've known for decades visited. The few hours we spent together mixed reminiscing and discussing resources at Kaiser that I haven't yet tapped into. He also expanded my support network by offering to accompany me to my Erbitux treatments or other medical appointments. And he made me giggle —well, I tried my best— by showing me a photo of the two of us from 20 years ago in which I'm sporting two pretzels in place of eyeballs.
Yesterday another friend —probably mindful that my new income situation will force me to cut back on movie outings and shopping sprees for used DVDs at Amoeba— generously gave me a gift subscription to Netflix.
And on Sunday a friend I met through AIDS/LifeCycle slipped a card to me at an ALC holiday party. When I opened the card at home, I saw a ticket to Disneyland. This friend knows how much I love the park and also knows that I haven't been there for more than a year.
So while one of my chief fears about going on leave from my job was going stir crazy in isolation at home, I'm feeling far from isolated these days, and grateful for the support.
On Wednesday: another round of Erbitux, some blood tests and maybe a call on the social work department at Kaiser. Without the pressure of needing to return to the office, it'll be nice to handle these appointments at my own pace.
Andy, Ed, Chris E and Mel: thank you for making these early days of full time cancer-fighting easier for me.
Sunday, December 6, 2009
Got myself in a little hot water this weekend.
With all that has been going on in my life and all of the changes that I've been going through, I've managed to overlook something important.
Like, my anniversary.
And not just any anniversary, either —I overlooked my first anniversary, and that establishes a rotten precedent for all that will follow.
Yep, it was one year ago yesterday that I checked into Kaiser's Los Angeles Medical Center and got hitched to my G-tube.
Or maybe the G-tube got hitched to me. Whatever. I slept through the whole ceremony. My point is getting hooked up to my G-tube was a pretty big event and I'm a cad to not acknowledge it yesterday.
So right now my G-tube is giving me the silent treatment. During our three meals together on Saturday and all during breakfast this morning —not a word.
The funny thing is, I didn't really expect my G-tube and I to last this long together.
We are so different from one another. I'm made of flesh; my G-tube is made of rubber and plastic. I like a little variety in my diet; but all my G-tube allows me to put inside of it is Isosource and my medicine. And I like to think of myself as being somewhat outgoing, but all my G-tube ever wants to do is hang around.
So it's something of a surprise that we made it this far together without going separate ways. And believe me, I have been tempted at times to grab a pair of scissors and call off our relationship.
The reality is, however, as much of a nuisance my G-tube is, without it I'd be a goner. I've poured about 995 cans of Isosource down my G-tube's hatch over the past 365 days, and if I didn't have that option, I'd have starved to death long ago.
And it doesn't look like I'm going to be able to feed myself through my mouth again anytime soon, so I better do everything I can to stay on my G-tube's good side.
Thursday, December 3, 2009
Barely eight hours into the first day of my medical leave from my job, I can already see that this staying-home-from-work jazz is gonna suck.
I'm missing everything about my job, even those things about jobs that are universally hated.
In the long run, however, negotiating a medical leave with my company's HR director was a good decision. So if I may take a cliché and adapt it to my sorry situation:
I'm gonna stick to my gums.
I can already see some of the upside of staying home sick.
When my usual waking time rolled around this morning, I didn't have to drag myself out of bed and get ready for work, despite not having a full night's rest. Instead, I knocked my alarm clock to the floor, and went back to sleep for another hour.
The alarm clock bounced beneath the bed, I think. Sometime before the end of the year, I'll make an effort to look for it.
Later in the morning, when I was struck by fatigue and struggled to keep my eyes open, I didn't have to hide how I felt from my co-workers. Instead, I threw a blanket over my head and treated myself to a nap.
And when secretions built up in my mouth and throat and needed to be expelled, I didn't have to duck into the bathroom at the office to discreetly clear them. Instead, I was able to grab a paper towel and take care of business without regard to how disgusting I sounded or disrupting my office mates.
I'm not sure how long my medical leave will last although I have promised myself that it won't last a day longer than necessary. But the pragmatist in me has already collected the forms that I need for long-term disability and assistance from the office of State Disability Insurance, and I'm completing them as quickly as my bum right rotator cuff allows.
As long as this leave lasts, I do know that each and every day I am going to need to seek out some kind of interaction with another human being.
Today I had plenty. I went to Bed, Bath & Beyond to find a new pillow that help me train myself to sleep exclusively on my back and avoid rolling over on my side and keep my right rotator cuff from healing. Every six feet, a bright and buoyant BB & B employee chirped, "Hello! Are you finding everything that you need?"
I know that it was in their job description to do that, but it still felt good.
And early this morning while feeding myself breakfast I picked up the phone and heard my aunt's voice on the other end of the line.
I didn't do such a hot job at keeping up my side of the conversation, but it was a real treat to hear her voice. And I don't think that she called because it was in her job description.
A community memorial for HIV/AIDS activist Howard Jacobs will be held at 3 p.m. on Sunday, Dec. 6, at Fiesta Hall or the Community Rooms at Plummer Park, West Hollywood.
Wednesday, December 2, 2009
After more than a year of dealing with head-and-neck medical issues, it was almost refreshing for a crisis to erupt in another region of my body.
I've been experiencing sharp pains in my right arm for about a month —to the point I can't lift my right arm, reach for my wallet with my right hand or carry anything heavier than a Q-tip with my right arm.
For weeks, I just wished that the pain would go away, and compensated by substituting my left arm instead of my right. In the meantime I've been having a dickens of a time doing things like tucking in my shirt, shifting my car's gears from Park to Reverse and even typing.
Last week an internal medicine doctor at Kaiser told me that it looked like I sprained a muscle group in my right arm, and he referred me to Physical Therapy. My first appointment was on Wednesday morning, before I headed down to the oncology department for my second treatment with Erbitux.
The therapist asked me to doff my shirt —at 131 pounds, I won't be gaining any recruits from Team Jacob— and asked me to tell him when I felt pain as he maneuvered my arm. It didn't take him long to determine that rotator cuff was injured.
He worked on the arm for about a half hour and showed me two exercises to perform at home three times a day. More important, he said it was critical that I stop sleeping on my side, in order to allow the rotator cuff to heal.
How the injury happened —jeez, I have no idea. I got an H1N1 vaccine in my right arm one evening, and as I slept that night I remember hearing a pop in my shoulder region. From that point, the pain slowly escalated.
I'm counting on the arm beginning to heal, even if I have to learn how to sleep hanging upside-down in my closet, like a bat. I'll be seeing the therapist again in two weeks and I should see progress by then.
Meanwhile, it's nice to have a medical condition that can be treated without using radioactive voodoo or debilitating courses of chemotherapy.
Sunday, November 29, 2009
A friend wrote on my Facebook wall: "Just read the Stones plan to tour again next year. So now you GOTTA stick around!"
He makes a good point. The Rolling Stones have been helping me keep that hooded dude with the scythe off my back for almost two decades now.
In 1991, when I got my AIDS diagnosis, I had no expectation that I would ever see my favorite band perform live again. The Stones had just completed a massive world tour the year before, and it had been eight years before their previous jaunt around the globe. In 1991, no one with an AIDS diagnosis reasonably expected to live four or five years, let alone eight, so I figured that the band's shows at the Coliseum in the fall of 1989 would be the last Stones shows I would see.
Surprisingly, the Stones waited only three years before hitting the road again, and just as surprisingly AIDS didn't get in the way of me catching a show on the band's 1994 tour.
But as I waited to exit the Rose Bowl parking lot after that performance, I told myself "That was definitely my last chance to see the Stones. No way am I going to live long enough for another tour." (I didn't expect to live long enough to find my way out of the Rose Bowl lot that night.)
Well, soon I was taking new combination therapies to treat my HIV. Those treatments succeeded and before I knew it, it was 1997 and the Stones were hitting the road yet again. I had an unexpected opportunity to see them a few more times.
Then they toured in 1999.
And again in 2002.
In 2005, the Stones began yet another tour, and I saw them several times that year and in 2006.
By this time I had stopped associating Stones tours with my longevity with AIDS. But now I have a new grim prognosis: one that may or may not come to pass by the time the Stones begin their 2010 juggernaut.
My doctors have penciled in spring as a possible expiration date on my medical charts; Mick and the boys are probably looking at summer for the first shows of the new tour,
If past is prologue, time will remain on my side and I'll find myself in the audience at a handful of Stones shows in 2010. I may need to stay seated during the most frenzied moments of the shows, but I'll be there.
Whether my eardrums make it that far is an entirely different matter.
Friday, November 27, 2009
My calendar had a bright red circle around today's date.
Kaiser was sending a home health nurse named Mary to my apartment to assess my situation today. I wasn't given a time to expect the nurse, I was told only that Mary would call when she arrived so I could buzz her in.
I got my shower out of the way early so that I wouldn't miss Mary's call. And then I got out my cleaning supplies to get the apartment presentable.
The last thing I wanted Mary to think was that her new assignment would be nursing a pig. I swept and mopped the kitchen floor, vacuumed the living room, fluffed up the pillows on the sofa, and scrubbed the counter top, shower tiles and toilet in the bathroom.
And then I sat on the sofa with the phone in my lap and waited.
Around 4 p.m., my best buddy sent a text message asking if I wanted some company.
It seemed fairly certain that Nurse Mary had stood me up so I told him sure.
The only problem was the apartment looked suspiciously clean: cleaner than it would need to be if I knew it was only my buddy coming by to visit.
I didn't want him to think that I was throwing away money on a maid's service, so I erased the vacuum lines in the carpet, scattered some debris on the kitchen floor, and replaced the good pillows on the sofa with the ones stained with drool, and put the guest towels in the bathroom back in the closet.
While my buddy and I watched an old episode of "Bewitched" in my comfortably disheveled digs, the phone rang.
I thought it might be Nurse Mary calling to say that she would be coming by after all, so I gestured to my buddy to pick up the phone.
Turned out to be someone calling to see if I had purchased a cemetery plot for myself yet.
Judging from what my friend said to the caller, I don't expect them to call back. I felt sorry for the guy. It must get tedious making cold calls on people to pitch cemetery plots, and he will never know how close he came to a live prospect.
The "Bewitched" episode saved the day from being a total wipe-out. I don't know if Nurse Mary keeps weekend hours but I may as well get up early again tomorrow, drag out the cleaning supplies and prepare for Mary's visit.
This place is a pig sty again.
Wednesday, November 25, 2009
Thirty-three sessions of radiation therapy couldn't blast cancer out of my body, and chemotherapy didn't work, either. So now it's up to a drug called Erbitux (Cetuximab) to succeed where all of the other treatments have failed.
Another episode of spontaneous bleeding delayed my departure from home Wednesday morning. By the time I got the flow of blood under control and dumped another sealed bag of bloody gauze and bandages in the Dumpster behind my apartment, I was a half hour behind schedule.
I made it to Kaiser's Oncology Department on time for my scheduled appointment, but not early enough to claim one of the select private or semi-private rooms in the oncology ward. By the time I checked in and had my vitals taken, all of the rooms had been filled and patients were being assigned to individual chairs in the high-traffic open area around the nurses' station.
I plopped myself down in chair No. 5 —all 131 pounds of me— opened the newspapers and waited for the day's adventure to begin.
Before long a nurse named Gilbert —wearing scrubs that were inside-out— came along to get the action under way. Gilbert started an IV on my left arm and began feeding me Benadryl before beginning the cancer drug du jour.
Today's dose of Erbitux was expected to take about two hours to deliver, and I hoped to spend as much of that time as possible asleep. The chair I had been assigned to, however, had seen better days: the only way I could recline was by leaning all of the way back and propping up the footrest with my kneecaps.
Around that time I realized that a woman sitting opposite my station had initiated a staring contest. Every time I looked up, her eyes were riveted on me. I held the newspaper over my face to get her to stop but each time I peered over the top of the page she was still staring at me. I shut my eyes and hoped the Benadryl would lure me to sleep but even then she didn't get the clue that I had no interest in a stare down; whether I liked it or not, I was her guy.
In desperation to make her stop staring, I got up, unplugged the IV stand from the wall and walked to the rest room.
While checking the bandages on my face, I was struck by something that had escaped my notice before today: Either Kaiser has installed fun-house mirrors in the johns in the oncology ward, or my head is getting rounder. I may have begun my cancer odyssey bearing a resemblance to Ben Stiller, but I've definitely moved on. Draw three circles on my forehead and you got yourself a bowling ball.
When I resettled into my chair, the woman who had been staring at me was now getting an IV of her own started. She left me alone for the rest of the visit, but I memorized her features in case I spot her in the ward when I return next Wednesday.
By noon, the Erbitux bag was empty, so Gilbert in the backwards scrubs came around to remove the IV and hand me my schedule of treatments. Barring intolerable side effects, I have eight more Erbitux sessions scheduled between now and the end of January.
Too bad it's too late to arrange to hop a red-eye to New York City. With my head swollen as it is now I bet I could I slip into tomorrow's Thanksgiving Day Parade as —good grief!— a Charlie Brown balloon.
Tuesday, November 24, 2009
At midweek, the theme for T.P. is T.C.B.
Ain't no time to wallow in the miserable medical news my doctors have been feeding me lately; I've got business to take care of.
Today I met with a benefits counselor at AIDS Project Los Angeles about applying for Social Security and disability benefits. I'm not quite ready to take that plunge yet but I know that the day is coming and this year has been full of surprises. Last week I made an appointment to discuss my options with APLA's Benefits team and today I walked out of APLA carrying 77 pages of forms to complete.
Yesterday I asked a friend to call Kaiser to get me an appointment to have my right arm looked at. Late last month, I twisted my arm in my sleep and the pain has been getting progressively worse ever since. The doctor I saw yesterday said that I sprained a muscle group in my arm, and I need to see a physical therapist to get it back in shape. As I wait for that referral, I'm allowing extra time to perform functions like buttoning my shirt and fastening my seat belt.
After the doctor looked at my arm, I asked him to take a peek at the bloody, pockmarked battlefield that used to be my chin. The cuts made during last month's biopsy remain murderously slow to heal and are prone to erupt blood at inconvenient times. Got a referral to a "wound care specialist," and in the meantime I'm stocking up on Johnson & Johnson products.
Next, Kaiser's Home Health Department booked a session with me at my apartment on Friday. Guess that means I can scratch "getting trampled at Toys R Us on Black Friday" off my list of worries. Getting home health services in place now will also allow me to access hospice services if that day arrives.
Finally, I'm having my first treatment of Erbitux tomorrow in Kaiser's chemo ward. My doc doesn't want me to get my hopes up but maybe this will give me the big break I've been waiting for.
Sunday, November 22, 2009
Watching "The Bucket List" was not one of the items on my own bucket list, but it's what I found myself doing the other night.
While pawing through the massive inventory of used DVDs at Amoeba on Thursday evening, I spotted Rob Reiner's 2007 film in a bin of blowout DVDs. I passed up on seeing "The Bucket List" when it played in theaters because the trailers made the film look pretty schmaltzy. I prefer movies to go easy on schmaltz; for that reason I rank "Death to Smoochy" higher in Robin Williams' canon than "Dead Poet's Society."
But the subject matter of "The Bucket List" made the film more relevant to me now than it was two years ago. Morgan Freeman and Jack Nicholson, both cancer patients sharing a room in a hospital owned by Nicholson, both get news from their doctors that they have six months to a year to live. So they compose a list of things that they want to do before they kick the bucket and then spend the rest of the movie doing those things.
Having heard similarly crummy news from my doctor on Wednesday, I wasn't so sure it was a good idea to bring "The Bucket List" home and make it the centerpiece of an evening of entertainment.
In my first attempt to view the film, I didn't get very far. I bailed after Morgan Freeman hears his doctor tell him he has six months to live. I yanked the disc out of the player and medicated on "Everybody Loves Raymond" till I fell asleep on the sofa.
But on Friday, I gave "The Bucket List" another shot.
It does get pretty silly and is completely predictable.
But it got me thinking about coming up with a bucket list of my own. I have no desire to drive a Mustang around a race track, jump out of an airplane at 20,000 feet or see the pyramids, but there are some things I'd like to do before kicking my own personal bucket.
I'm getting a late start, and I don't have a billionaire underwriting my expenses, but that's no reason to not come up with my own list.
And at the top would be "Prolong the amount of time I have before it's time to kick the bucket."
Thursday, November 19, 2009
After the nurses in Kaiser's oncology ward succeeded in halting the flow of blood from the wounds on my face Wednesday morning, they led me back down the blood-dotted corridor and into an examination room to wait for my visit with Dr. B2.
My appointments with Dr. B2 ended abruptly last winter after my blood counts took a nose dive and a third session of chemotherapy was called off. So it had been a good eight months since I had seen Dr. B2 or even been inside the oncology department at the easternmost facility at Kaiser's Los Angeles Medical Center campus.
A lot has happened in the intervening months. I made it to the finish line of my radiation treatments, then struggled with side effects. A PET scan and a biopsy indicated that the treatments had succeeded, then three months later another biopsy cut my career as a cancer survivor short.
Lately my doctors have begun telling me that there's not much that can be done so a lot was riding on what Dr. B2 had to say.
He turned out to be the most pessimistic of all.
"Your cancer is present in a widespread area," Dr. B2 said. The fact that my face is slow in healing from the biopsies indicates how aggressively the cancer is moving, he added. "I don't think that more chemotherapy would be helpful at this point."
I tried to take careful notes but my pen kept slipping out of my fingers and skidding across the page.
"Will this kill me eventually?" I wrote. "And how soon might that happen?"
As soon as I held the note pad up for Dr. B2 to read, I regretted asking that question.
The doctor's reply was unexpectedly blunt. "The cancer is likely to cause some kind of issue —difficulty swallowing or bleeding, perhaps— and that will probably end up killing you. As for the time frame, it could be less than six months. Maybe longer."
While Dr. B2 doesn't expect much of a benefit, next Wednesday, he's starting me on a type of chemotherapy to try to slow the cancer down. This drug, called Erbitux, is limited in how helpful it can be, and he warned that the cancer will progress whether I do the new treatment or not.
It was a lot to handle all at once. Left alone in the examining room, I sent a text message to my best buddy telling him that Dr. B2's assessment was the gloomiest yet. My buddy asked me if I wanted him to come down to Kaiser, and I said yes.
Before I knew it, he was there. My cancer may be moving aggressively, but my friends can move even more swiftly when they know that I need them by my side.
Next step is seeing what this lil' ol' drug Erbitux can do for me. Dr. B2's expectations could hardly be lower, but it's up to me to prove him wrong.
I'm in no mood to start leafing through hospice brochures.
Wednesday, November 18, 2009
While waiting in line in the Oncology Department at Kaiser this morning, I unfolded the newspaper and skimmed the headlines.
Suddenly, a photo of President Obama touring the Forbidden City was bathed in a violent circle of blood. Seconds later —splortch!— another bombshell of blood fell on the paper. And another! And another! Run for cover, Mr. President!!
The blood was falling from two holes in my chin, where two weeks ago Dr. B1 sliced off slivers of skin for biopsies. The holes in my face have been extremely slow to heal, and I have been applying fresh bandages every day, but this was the first time that I've had a bleeding crisis in public.
At least I chose the right place for it to happen.
I hurriedly stepped up to the counter to get aid. By reflex, the woman said "Your Kaiser card, please," while staring at her computer monitor. Only after she glanced upward and saw my newspaper —now soaked almost to the edges in red— did she realize that this was a situation requiring intervention, and quickly.
She rose and told me to meet her at the door leading to the exam area. I moved quickly through the packed waiting room, keeping the paper below my chin to prevent blood falling upon anything other than Wednesday's New York Times.
Reunited, the woman and I walked quickly down the corridor, toward the nurses' station. I saw that the blood was dripping onto the floor, now. At least I wouldn't have to worry about getting lost when it was time to leave.
Two nurses —both of whom I recognized from my chemotherapy treatments last winter— directed me to sit in a reclining chair. One grabbed a large white towel and placed in on my chest while the other opened a cupboard and collected gauze, bandages and tape.
By the time that they were through, I looked like the Invisible Man. But the bleeding had stopped.
In all of the excitement, I didn't notice what happened to my newspaper. So it wasn't until deep into the evening, hours after my visit to Oncology was over, that I caught up with President Obama and how his visit to the Forbidden City went.
I submit my experience as evidence why print media can never completely be replaced by electronic newspapers. What good would a Kindle reading device have done me in a situation like I had this morning?
Some days, the Luddites win.
Note to my TP peeps: No, I haven't overlooked the fact that today's post tells you absolutely zip about my face time today with my oncologist. There was a lot to absorb, and I need some time to process it all. Come back later in the week.
Monday, November 16, 2009
Boy, am I red-faced tonight. And I'm not talking about the various shades of red below my lip and around my chin where blood continues to ooze from one of the craters that Dr. B1 made when sampling tissue for biopsies almost two weeks ago.
No, I'm red-faced because I caught myself in a major boo-boo.
Throughout the year, my trach and my G-tube have enjoyed co-star status on this blog, popping up at times I want to give you an idea of what it's like to live with a hole in one's neck and a rubber tube punched into my belly.
"Trach" rhymes with "snake" and is short for tracheotomy.
Or so I would have you believe.
Well, tonight I was scrubbing my trach clean of all of the gunk that builds up inside it when I realized I should probably spare myself all of the elbow grease and just soak it for a day or two. And I reached for a fresh trach to wear in the meantime.
Imagine my surprise when I read the packaging and saw that the proper name for a trach is "tracheostomy," not "tracheotomy."
I know that I've been just one consonant short of having the name right, but wrong is wrong no matter how you cut it.
Over the next few days I'll be going backward in time, and correcting all of the instances where I've screwed up the name. But I thought I better come clean with all of you first.
Just goes to show you: You really put your neck on the line when you blog without a safety net.
Saturday, November 14, 2009
Earlier this week, I posted a link to an obituary for my friend Howard Jacobs, an HIV/AIDS activist who died of liver cancer on Wednesday.
I met Howard more than 15 years ago, when he became involved as a volunteer for AIDS Project Los Angeles, where I worked. I edited Positive Living, a monthly magazine at APLA for people living with HIV/AIDS, and Howard was a frequent contributor.
Today I dug deep into my closet to find pieces that Howard wrote for Positive Living. I found nearly a dozen, published between 1994 and 2000. This is one of them:
I Want to Paint My Hair Green
By Howard Jacobs
I said to my best friend, "I'll paint my hair green if I survive this. He replied, "If I survive AIDS, I'll paint my hair green, too.
Today I'm eyeing a bright florescent green. It is a brilliant shade that says hey, world, listen to me. "MY VIRAL LOAD IS UNDETECTABLE and I have 891 T-cells." Isn't that amazing. Just think: I may be a survivor. After an arduous eight-year battle and a quick, yet difficult adjustment to a new drug cocktail that includes a powerful protease inhibitor, I want to paint my hair green. It seems simple. Get a can and spray it, but I can't paint my hair green. If I do that I won't blend in with my community. Unfortunately, not everyone is doing as well as me.
What if I paint my hair pink? Pink is a color that says you're different. It reminds me of the ACT UP marches I attended, the safer sex demonstrations I gave and the lobbying visits I made. During the Holocaust, if one wore a pink triangle it meant one was gay. People now use that symbol to represent solidarity. I want to paint my hair pink but I can't. Pink was the color emblazoned on my best friend's tattoo. It said HIV-positive. I'll never see that tattoo again. My friend is dead, along with too many others. These friends can no longer guide me with their words. They guide me with their spirits. Sometimes that makes me sad.
Perhaps I'll paint my hair blue. Blue is my favorite color and has given me luck. I wore a blue short every time I cleared customs in countries which wouldn't allow HIV-positive visitors. I never got caught or suffered the humiliation other foreigners did when entering my own country, the USA. It makes sense to paint my hair blue. It's a color which brings me good fortune although it didn't when I was originally diagnosed. I wore a blue suit the day the company I worked for fired me. They discovered I had AIDS. Soon after they took away my employer-financed, private health insurance coverage. It was a trying time. I want to paint my hair blue, but I can't. Having blue hair may not help my search for a quality job or a kinder corporation.
Maybe I'll paint my hair yellow. Everyone knows blondes have more fun and if I'm going to have a future I'll need to have fun. It's been difficult enjoying myself these past eight years, but I've tried. I visited beautiful places and met extraordinary people yet I've learned living with AIDS means I have enormous responsibilities. These have not been fun. Or easy. It's hard to disclose one's HIV status or care for a sick friend. The vision of my parents' crying eyes as they walked into my hospital room will remain with me forever. I want to paint my hair yellow but I can't. Until there is a cure for AIDS those responsibilities and painful memories cannot go away.
I should paint my hair gray. Gray hair commands respect. Many distinguished gentlemen proudly display their gray hair symbolizing a lifetime of wisdom. I feel I've lived a lifetime. Graduating from college, becoming satisfied with my career accomplishments, living dreams I thought of as a child and burying loved ones: that is a lifetime. I deserve to paint my hair gray but I can't. I'm 33 years old and too young to explain a head full of gray. My chronological age does not match my experience.
That's why I'm keeping my hair the color it is. I'm afraid to paint it. Surviving AIDS makes me afraid, too. The feelings are awesome and the obstacles seem endless. I am unsure I can overcome them but I am ready for the opportunity to outlive them.
I want to paint my hair green but I can't. Not yet.
A memorial for Howard Jacobs will take place at 1:30 p.m. on Sunday, Nov. 15 at Congregation Kol Ami, 1200 N. La Brea Ave., West Hollywood.
Thursday, November 12, 2009
Dr. B1 already let the cat out of the bag about my biopsy results a day earlier, so I didn't know what to expect when I showed up in Kaiser's Head and Neck Surgery Department on Wednesday for my post-op appointment.
Once Dr. B1 entered the exam room and placed a hand on my shoulder, however, I had a gut feeling about what he had to say.
He logged on to his computer and called up my chart and the pathologists' notes. Dr. B1 took six tissue samples in last Tuesday's biopsy, beginning at the base of my tongue, where cancer was first detected in January, and moving forward toward the front of my face. From my chin, he carved out a hole about the size of a dime.
His harvest of flesh struck the jackpot: Each of the samples Dr. B1 captured contained carcinoma. Six skulls and crossbones in a row.
What this means, Dr. B1 explained, is that the cancer did not respond to the radiation treatments and chemotherapy I had last winter, notwithstanding the midsummer biopsy that produced "no evidence of cancer."
"You must feel like you've had a load of bricks dropped on you," he said, then adding that it looks like I'm now "caught between a rock and a hard place."
If I could talk, I would have interjected, "That's two cliches in one sentence, Doc. I'm cutting you off."
He described what a surgical response to my cancer surge would look like. First, my tongue would be removed, and then my mandible. Bone grafts from my leg and arm could make up some of the loss, but whether they would work would be uncertain, and cancer could still return.
The whole thing made me queasy, so I was relieved when Dr. B1 said that surgery wasn't a viable option.
That left chemotherapy as the next option.
I really snapped to attention when Dr. B1 told me that the chemotherapy would not be "curative" but instead "palliative." In other words, he thinks that a cure is not possible. The best that I can hope for is controlling the symptoms of the cancer.
You see the term "palliative care" a lot in hospice brochures. I wasn't prepared to see these words introduced into my medical vocabulary.
Dr. B1 and I spent a long time not saying much of anything to one another. I quietly tried to absorb everything that Dr. B1 had said, and he sat beside me.
After several minutes, he passed me off to Dr. McNicoll, another surgeon in the Head and Neck Department.
I wasn't really clear why I was seeing a new Head and Neck physician after more than a year of office visits and three surgeries with Dr. B1, but I was certainly open to hearing another doctor's assessment of my situation.
Dr. McNicoll didn't pull any punches. He said that surgery would mean cutting off "half of my head," and his take on the chemo was that nothing can really cure me at this point.
So he took the discussion in a new and wholly unexpected direction. He urged me to think about how I wanted to spend my days: doing things I enjoy or running around seeing oncologists and sleeping in hospital beds tethered to an IV.
He added that I might want to see a social worker about an advance directive.
Both appointments were over inside of an hour. And after I checked out with the nurse at the front desk something happened for the very first time: I was leaving the Head and Neck Department without having a return visit set up.
My hub of my Kaiser experience is now drifting eastward, down to the oncology department at the complex on Vermont Avenue. I'll be seeing Dr. B2 there on Wednesday to discuss chemotherapy.
Where this is all going to lead is anyone's guess.
My dad reminded me on Wednesday that when faced with dicey odds, I have a history of proving doctors wrong. I'm counting on history repeating itself.
Wednesday, November 11, 2009
It's Veterans Day and I want to write about a veteran who I have known all of my life.
My dad is a decorated veteran of the Korean War, and I'm very proud of him and the sacrifices he made for this nation before I was even born.
Dad is a vet in more ways than one. After serving in the Army in the 1950s, Dad went on to become a veteran care-giver. He didn't choose that role, but when the times came when his family needed him, he never flinched. He was always there.
This morning, Dad sent an email to remind me of a time in my life when I was facing steep odds, steeper than what I'm facing now.
"I remember when you were about three years old and had a bowel entanglement and went into a coma for a week," Dad wrote. "The doctors did not have much hope for you.
"Your mother and I were with you around the clock taking turns. I remember one Saturday about 6 a.m. I was with you when you woke up and started to smile. I had just opened the drapes in your hospital room and the sun started to shine in. Shortly after that Dr. Schiff came in and when he saw you were awake he said to you that you sure must have a lot of guts as you really needed it to pull through."
Dad isn't happy about the latest news about my cancer fight. But he wrote today that I have to "continue believing in yourself and remember not to give up."
Many years later, Dad was keeping vigil at a hospital after my mother fell ill and was also in a coma for weeks. But Mom pulled through, and stayed with us for another 13 years, thanks to her tough spirit and Dad's boundless capacity to care for her.
Dad's regular emails to me throughout this struggle have lifted me in more ways than I can ever explain. He always tells me that I'm tough, just like Mom. Today's remembrance from Dad reminded me that when I beat this current bout of cancer it won't be the first time I will have caught my doctors by surprise.
Dad has faith in my ability to overcome this crisis. What I want Dad to always remember is that whatever strength I have I learned from him and from Mom.
Thanks for being there for me, for Mom and for Mike, Dad. It has made all of the difference.
I am so lucky to be your son.
I lost a friend today: Longtime HIV/AIDS activist Howard Jacobs dies
Tuesday, November 10, 2009
This year roared in like a lion, and it looks like it's going to go out the same way.
On Tuesday afternoon, Dr. B1 emailed the pathology results of last week's biopsies, and they reinforce the observations made by my radiation oncologist late last month. "The results of your biopsy unfortunately showed a recurrence of the cancer," Dr. B1 wrote today.
Dr. B1 went on to say that he has spoken with other doctors on my Kaiser team, and their recommendation is for chemotherapy treatments. I'll be meeting with a new chemo doc Wednesday at 4, right after seeing Dr. B1.
I would have been surprised if Dr. B1 had told me that there was no longer evidence of cancer, as he said following the biopsy last summer. Just by looking in the mirror, I can tell that something wacky is going on with me from the neck up. This has been obvious to me for weeks. And on Monday, I noticed that the same kind of numbness that I began feeling months ago in my jaw was now advancing into my left ear.
So the bad cells are gaining ground. And the sooner that my doctors and I can initiate a vigorous counter assault, the better.
Saturday, November 7, 2009
Had a mini-meltdown the other day at the end of my workday.
The inside of my mouth was feeling increasingly full and I started feeling dizzy. When my breathing became labored, I was convinced that my airway was closing up and that the janitorial crew was going to have one unholy mess on its hands when it arrived to tidy up the office that night. Or I would have a shot at being picked in an audition for the Blue Man Group.
If I left work right away, I had a chance of getting to Kaiser before the Head and Neck Department shut down for the day. If I didn't get there in time, I would just go down the block to the emergency room. I sent a text message to my best buddy to loop him in on what was going on, and he phoned right away to tell me I should go straight to the ER.
I made good time getting across town to Kaiser so I decided to head first to Head and Neck to see if Dr. B1 was around. It was an economic decision, frankly: The copay for seeing Dr. B1 is $15 but a visit to the ER would set me back 50 bucks. My symptoms weren't getting worse so I thought I wasn't taking an unnecessary risk.
While riding the elevator to the sixth floor, I listed the symptoms I was feeling in my notepad so I could just hand it to the receptionist at Head and Neck as soon as I walked up to the counter.
She greeted me by name, as always, and sensed right away that I was scared. After reading the first few lines of my note, she got on the phone to see if she could find Dr. B1.
He was out for the day, so she found another doctor in the Head and Neck Department. And in just minutes I was sitting in the exam room for Dr. Ditirro, shaking like a leaf.
As soon as Dr. Ditirro entered the room, I thrust my note pad at him.
The first thing he did was check my airway by sliding a camera into my trach. He assured me that the airway was clear and that I was in no danger of suffocating. He said that my mouth was still recovering from the biopsies on Tuesday and that the swollen feeling would diminish.
Based on Dr. Ditirro's calming demeanor, I got the feeling that I'm not the first Head and Neck patient to have an anxiety attack like this. Right away, I felt at ease.
I am fortunate to have been able to walk in off the street and get looked at by a Kaiser provider right away. I thanked Dr. Ditirro for his time, and then spent a few minutes in the reception area steadying my nerves and texting my friend that I was fine.
I know that health-maintenance organizations sometimes get a bad rap from patients; even in this blog I've written about occasional loose cogs I've encountered in the Kaiser system. But those experiences are the exception, not the rule. The quality of care I get at Kaiser is excellent.
Wednesday, November 4, 2009
The end of the year —heck, the end of the decade— is nigh (are bloggers allowed to use prose from the Middle Ages?), and so my hat trick of surgeries for 2009 is now complete.
I really don't expect to go under the knife again any time soon —not for Dr. B1, nor for anyone else. (And if the hoods who mugged me in my alley two years ago happen to be reading this, that means don't come prowling around my neighborhood wielding a blade rather than a gun.)
This time around, Kaiser didn't need me to check in till 11:30 in the morning, which gave me five additional hours of perpetual nervousness about the day's procedure. It also gave me extra time to properly underpack for a brief stay in the hospital.
The last time I had surgery, the folks at the admitting desk wouldn't let me bring my wallet —or any cash at all— with me into the pre-op room. So when I left my apartment for Tuesday's surgery, in one pocket I carried my photo I.D. and my Kaiser membership card and $16.25: 15 bucks for my copay and a buck-and-a-quarter for the subway ride. My other pocket held my house keys and a few bucks in case of an emergency on the way to the hospital.
I also packed my trusty note pad and pen, and a magazine whose name, Uncut, might seem an ironic choice for a guy about to be carved up. (Those of you snickering about the name Uncut ought to be ashamed of yourselves; Uncut is a music magazine, not what you're thinking.)
I sailed through the first few steps at the admitting desk, then found a seat in the waiting room. Without a wallet and carrying not even a penny (I wedged that emergency stash into the crack of my butt), I felt oddly vulnerable. So I reached into my bag for my magazine to try to relax.
I quickly put the magazine away. Uncut has a bold, red nameplate that can be read from across the room, and I didn't like the looks that some guy a few rows away was shooting in my direction. Lou Reed is on the cover of this month's Uncut, and I can imagine a stud like Lou being featured in another kind of magazine with the name Uncut.
Two cops came into the admitting area, along with an old man in a dark blue sweatsuit and a woman around the same age whose face was on too tight. I quickly sized him up as a white collar prisoner on a surgery day pass from San Quentin and I tagged her as his moll, mistress or wife. One of the cops was telling jokes and the crook and his wife seemed to be having a good time, even trading turns squeezing a stuffed animal, but I could tell that they were captives. Hey, remember how chummy Jack Nicholson and Otis Young got with their prisoner, Randy Quaid, in "The Last Detail"? Before I could eavesdrop long enough to get anything dirt on their situation, my name was called.
Before I knew it I was buck naked and fumbling for the strings in the back of my hospital gown. I stuffed my socks into one of my sneakers, my underwear in the other, rolled up my jeans and my shirt, and stuffed everything into a bag, along with Uncut, which I still didn't feel comfortable reading, not around people who are paid to slice guys like me open for a living, if not sheer sport. I laid in the bed with my notepad on my belly, prepared for the pre-op do-si-do of men and women in scrubs. I was kinda chilly, but there was no blanket to be seen.
First, a nurse queried me on the last time I ate (6 p.m. Monday), the last time I took any medication (6 a.m. Tuesday) and asked me to prattle off the names of all of the meds I'm now taking. That list was long before I got cancer and now is only getting longer. (I need to come up with a clever mnemonic for Epivir-Norvir-Prezista-Viread and Ziagen, and newcomers Acetaminophen Codeine Phosphate and Cyclobenzadrine and sometimes Flomax. Anyone help me out?)
Then a trio of anesthesiologists showed up, one at a time, to explain the day's procedure and to review what kind of surgery I would be having. Two of them were convinced that I was having ear surgery in addition to biopsies on my mouth, tongue and face. Another smiled that she would be back soon to give me my "Happy Juice." (If that's how some medical professionals tout that anesthesia to their patients, is it any wonder that Michael Jackson got hooked on the stuff?)
Well, it turned that propofol was not Kaiser's happy juice du jour, because when my next visitor, Dr. B1, came to my bedside, he said that there was a regional run on propofol —and he added that the shortage had nothing to do with Michael Jackson, although it wouldn't surprise me if some overly devoted fans are shipping tanks of propofol to Jacko's mausoleum at Forest Lawn.
Then, one of the anesthesiologists returned to shoot me up with Happy Juice, accompanied by yet another anesthesiologist. As I watched one of them approach my bed, my heart raced when I saw she was carrying a blanket. Imagine how I felt when, after reaching the foot of my bed, she let out a huge yawn and wrapped the blanket around herself. (Hey, Dr. B1, I may have smoked out an explanation for the shortage of Happy Juice in Kaiser's fridge.)
Finally, the nurses came to wheel me into the operating room. This is my favorite part of surgery day: the dramatic ride down hospital corridors. This time, they didn't wheel me around aimlessly until the anesthesia took hold; I actually remember being brought into the operating room, and what a shiny, gorgeous showroom of gore it was.
And that was the last thing I remember before surgery. When I came to, it was already 6:30 p.m., and both of my guardian angels had been called to come drive me home. Because the call came unexpectedly late, Guardian Angel Tweedledum deferred to Guardian Angel Tweedledee —I know, I know: that's no way to talk about one's Guardian Angels— and before long Tweedledee showed up at my bedside.
But I sent him away for an hour or so. You see, my bladder felt full, but I couldn't bring myself to pee. This happens to me a lot, but usually only in men's rooms with no dividers between urinals. When it happens to me in a private hospital john, I know that the anesthesia I was given may be wreaking havoc on my urinary tract.
To be on the safe side, I asked Tweedledee if he could find something to do as he waited for my text to alert him that I had successfully peed. Luckily, urine did flow before long, and I felt comfortable enough to check out, hop in the wheelchair and ride to my friend's car in the parking lot, making a pit stop at the pharmacy for Band-Aids for the oozing scabs on my face (Tweedledee paid. What was I gonna do: fish three bucks out of my butt and hand them to the pharmacist?!).
By the time Tweedledee and I got to my door, it was pushing 9:30. It had been a long day.
And it's going to be a long week of waiting for the first results of the biopsy to roll in.
P.S. to Tweedledum: Don't be cross I assigned you the less appealing moniker of the two. You know I love you, too.
Tuesday, November 3, 2009
Monday, November 2, 2009
I'm making no predictions about what Dr. B1 will or will not find Tuesday afternoon when he slices tissue in and around my tongue for a biopsy, for the third time in 10 months.
There's only one guarantee about tomorrow, as far as I can see: When I get wheeled into the recovery room at Kaiser following surgery, no nurses are going to flutter around my bed mistaking me for Ben Stiller.
With the horrifying transformation of my face over the past several weeks, my days of faux celebrity-hood at Kaiser have come to a close. If anyone were to confuse me with anyone famous, I think it would be a hybrid of Freddy Krueger and the Incredible Mr. Limpet, with a hint of Nixonian jowls tossed in for good measure.
But the changes in my face are occurring at an alarming pace, so who can predict where my mug is ultimately headed?
Every now and then I'm tempted to take another self portrait and post it here so all of you can see what I'm talking about. But I don't want to shock anybody and I probably shouldn't embarrass myself.
And I'm grateful no one I saw at the office today took a look at me and said, "Hey, Serchia! Don't you know that Halloween is over?"
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.