I swear that whenever I venture out into public I hear people humming that song "Who Let the Dogs Out (Woof Woof Woof Woof)?"
It could be that I am just overly sensitive to the resemblance of my trach apparatus to a dog collar. When you combine my trach collar with a tongue that is too swollen to stay completely inside my mouth, I guess I look more canine than human, especially if my G-tube is drooping behind me like a tail.
It really is time for me to permanently incorporate scarves into my wardrobe.
When I carped about scarves in this blog recently, I owned only one: a cute lil' number that my prescient brother and sister-in-law sent to me last Christmas, long before I knew that a head-and-neck surgeon would be poking a hole in my neck in the new year.
Since then, my scarf options have grown.
Early this week, I discovered a scarf in my sock drawer, a relic from a brief period in the early '80s when I fancied myself as a New England preppie.
Then one day I opened my mailbox and saw a package from Ginger Brewlay, an icon from AIDS/LifeCycle and a tireless advocate of AIDS causes.
If you have never met Ginger Brewlay, you just don't know what you're missing. Here is a photo of Ginger on Day 2 of AIDS/LifeCycle 7, and here is a photo of her and my dear friend Beau near the peak of Quadbuster on Day 3 of ALC 7. And here is a photo of Ginger horsing around with my friend Jim on Day 5 of ALC 7.
You see the wigs that Ginger is sporting in those photos? After Ginger learned that I had cancer and would begin radiation and chemotherapy soon, she wrote: "If for some reason you lose your hair, no worries, I'll work my magic on some wigs and hats for you, you'll be just fine. Being in DRAG for a day could be fun! Give it a try. Ha-ha!"
When I opened the package from Ginger, I found a beautiful eggshell-colored scarf with a shiny star embroidered on it, and a card from her that said "Here is one of my scarves that I have put a star on. You are a brilliant star crossing our universe. Wear it in good health!"
I decided that the scarf would be what I wear on my first day back to work.
Just a few days later, I opened my mailbox to discover another package from Ginger Brewlay.
This time, there was a note from Ginger saying that she was cutting hair a day earlier, and spoke about me to a friend named Jim who crafts some of Ginger's skirts and dresses, including this dress, which Ginger wore on a World AIDS Day bike ride in 2007.
"[Jim] gave me this scarf for you to hide the trach," Ginger wrote. "Bring some color into your day!"
The scarf Ginger's friend Jim made is a gorgeous rhapsody of red, yellow, purple, blue and black, and it even has his signature on it. I'll wear it on my second day back at the office.
I'm lucky to have friends like Ginger and Jim looking out for me and boosting me up the fashion ladder and keeping me from looking like a model in the Petco catalog.
If only Mr. Blackwell were still around, I'd have a shot at landing on his best-dressed list.
Saturday, January 31, 2009
Friday, January 30, 2009
Short life, long legacy
Popped by my workplace on Wednesday to drop off a document from my doctor.
The manager I needed to see was on a break when I arrived, so I decided to hang out rather than slip the document under the door.
After some time passed, I thought I would leave and come back later. I spotted what looked like a ream of paper on a lower shelf in bookcase in a hall, and reached for a sheet to use for a note.
I realized that what I thought were loose pages were bound into a manuscript. I picked it up and read the title:
"A SHORT LIFE: The Unexpurgated Memoirs of a Young Man with Cancer"
I remembered hearing about this book, but I had never seen it before. Completed in 1983, "A Short Life" was written by a man named Jim Slotnick, a former volunteer at the organization where I work.
I got permission to take the manuscript home, and finished reading it on Thursday.
Like the book's subtitle says, Jim Slotnick had cancer. A condition that initially presented as double vision a week before he began medical school was determined to be caused by a brain tumor months later. He was 25 years old at the time.
Slotnick writes:
I had always entertained the vague notion that I would enjoy perpetual good health. After all, I was on my way to medical school. I was going to be a hot-shot doctor, and we all know that doctors never get sick. I jogged four miles a day with regularity, had good eating habits, and I didn't ingest any recreational drugs. I had never taken medications of any kind. My body always responded whenever I needed it. I was only 25 years old; it would have been inappropriate for me to have any worries about my health. Little did I suspect how rudely my adolescent fantasy of immortality would be shattered.
Slotnick spends the first half of "A Short Life" reflecting on his adventures in the first 25 years of his life: growing up in the "slums" of Beverly Hills, his passion for baseball, hitchhiking across the U.S. and then back to California, and starting on his career studies. In the second half of the book, Mr. Slotnick tells how he fought cancer in his remaining three years.
Some of my experiences in life echo Slotnick's without quite matching up.
Slotnick was born in Buffalo, N.Y.; I was born in nearby Niagara Falls. While Slotnick was attending Beverly Hills High School, and beginning a path that would lead to medical school, I was beginning high school in the Antelope Valley and preparing for a career in journalism. Slotnick was a few years ahead of me, but we both were shaped by the wild times in which we came of age. When Slotnick speculates about a photograph of the Rolling Stones wearing dark sunglasses, I can envision the photo he may be describing.
And then there is the cancer thing.
The second half of "A Short Life" scared the wits out of me. As someone who is about to embark on a course of radiation therapy, I was terrified by the complications of therapy that Slotnick combatted, and recounts in his book.
How can I possibly describe the anger and frustration I now feel daily when I confront the unwillingness of my body to walk, talk, swallow, chew, hear, smile or move properly? The speech impediment I have is maddening in its ability to turn away any external evidence of my charm or intelligence into the type of drivel that a bunch of chimps would laugh at. My vocal chords are paralyzed; I have to yell in order to be heard over a distance of a few feet. My lips and tongue no longer want to move correctly. My speech is garbled, as well as inaudible. As a consequence, I can be thinking of a great joke or put-down, but all I can produce is an ineffective semblance of my conception. I am left feeling like a little human fission bomb: my most sophisticated thoughts and feelings are ready to implode within my already-damaged brain.
According to a note by Jon Slotnick, the author's brother, Jim Slotnick died 24 hours after completing edits on his manuscript.
Monday, Feb. 2 is the 26th anniversary of Jim Slotnick's death.
"A Short Life" is only part of the legacy that Slotnick left behind. Students at the David Geffen School of Medicine at UCLA are eligible to seek a fellowship in Jim Slotnick's name, and those students are part of the team at the clinic where Jim Slotnick volunteered and where I work today.
Yesterday, a co-worker who worked at the clinic when Slotnick was a volunteer said that she feels privileged to have known him.
After reading "A Short Life," I feel as if I know Jim, too, and I am fortunate that he entered my life at this particular moment.
I'm not in any hurry to return the manuscript to the office. I've got six weeks of radiation therapy ahead of me. I want to keep Jim Slotnick's book close by.
The manager I needed to see was on a break when I arrived, so I decided to hang out rather than slip the document under the door.
After some time passed, I thought I would leave and come back later. I spotted what looked like a ream of paper on a lower shelf in bookcase in a hall, and reached for a sheet to use for a note.
I realized that what I thought were loose pages were bound into a manuscript. I picked it up and read the title:
"A SHORT LIFE: The Unexpurgated Memoirs of a Young Man with Cancer"
I remembered hearing about this book, but I had never seen it before. Completed in 1983, "A Short Life" was written by a man named Jim Slotnick, a former volunteer at the organization where I work.
I got permission to take the manuscript home, and finished reading it on Thursday.
Like the book's subtitle says, Jim Slotnick had cancer. A condition that initially presented as double vision a week before he began medical school was determined to be caused by a brain tumor months later. He was 25 years old at the time.
Slotnick writes:
I had always entertained the vague notion that I would enjoy perpetual good health. After all, I was on my way to medical school. I was going to be a hot-shot doctor, and we all know that doctors never get sick. I jogged four miles a day with regularity, had good eating habits, and I didn't ingest any recreational drugs. I had never taken medications of any kind. My body always responded whenever I needed it. I was only 25 years old; it would have been inappropriate for me to have any worries about my health. Little did I suspect how rudely my adolescent fantasy of immortality would be shattered.
Slotnick spends the first half of "A Short Life" reflecting on his adventures in the first 25 years of his life: growing up in the "slums" of Beverly Hills, his passion for baseball, hitchhiking across the U.S. and then back to California, and starting on his career studies. In the second half of the book, Mr. Slotnick tells how he fought cancer in his remaining three years.
Some of my experiences in life echo Slotnick's without quite matching up.
Slotnick was born in Buffalo, N.Y.; I was born in nearby Niagara Falls. While Slotnick was attending Beverly Hills High School, and beginning a path that would lead to medical school, I was beginning high school in the Antelope Valley and preparing for a career in journalism. Slotnick was a few years ahead of me, but we both were shaped by the wild times in which we came of age. When Slotnick speculates about a photograph of the Rolling Stones wearing dark sunglasses, I can envision the photo he may be describing.
And then there is the cancer thing.
The second half of "A Short Life" scared the wits out of me. As someone who is about to embark on a course of radiation therapy, I was terrified by the complications of therapy that Slotnick combatted, and recounts in his book.
How can I possibly describe the anger and frustration I now feel daily when I confront the unwillingness of my body to walk, talk, swallow, chew, hear, smile or move properly? The speech impediment I have is maddening in its ability to turn away any external evidence of my charm or intelligence into the type of drivel that a bunch of chimps would laugh at. My vocal chords are paralyzed; I have to yell in order to be heard over a distance of a few feet. My lips and tongue no longer want to move correctly. My speech is garbled, as well as inaudible. As a consequence, I can be thinking of a great joke or put-down, but all I can produce is an ineffective semblance of my conception. I am left feeling like a little human fission bomb: my most sophisticated thoughts and feelings are ready to implode within my already-damaged brain.
According to a note by Jon Slotnick, the author's brother, Jim Slotnick died 24 hours after completing edits on his manuscript.
Monday, Feb. 2 is the 26th anniversary of Jim Slotnick's death.
"A Short Life" is only part of the legacy that Slotnick left behind. Students at the David Geffen School of Medicine at UCLA are eligible to seek a fellowship in Jim Slotnick's name, and those students are part of the team at the clinic where Jim Slotnick volunteered and where I work today.
Yesterday, a co-worker who worked at the clinic when Slotnick was a volunteer said that she feels privileged to have known him.
After reading "A Short Life," I feel as if I know Jim, too, and I am fortunate that he entered my life at this particular moment.
I'm not in any hurry to return the manuscript to the office. I've got six weeks of radiation therapy ahead of me. I want to keep Jim Slotnick's book close by.
Thursday, January 29, 2009
Mannish boy
I went to bed Wednesday night substantially more manly than I was when I woke up on that morning.
More humanly, at least.
Wednesday morning I headed to the Kaiser Kampus with a hefty to-do list, starting with a return appearance in the Urology Department.
Kaiser's urologist and I had a deal: If I could demonstrate my ability to pee successfully on my own, she would authorize removal of the Foley catheter I had been schlepping around since the day I left the hospital.
Just as she did one week ago, a nurse pumped my bladder full of water, removed the catheter, and then handed me a plastic container. My mission was to fill the container with enough urine to convince the urologist to liberate me from the rubber-and-plastic albatross anchored to my leg.
Michael Phelps never experienced the pressure I felt yesterday after the nurse left me alone in the exam room with the empty container. But I gave the performance of a lifetime, and left that artificial appendage behind in the medical waste bin.
From Urology, I headed across the street to the Kaiser pharmacy.
Cancer sucks up all of my attention these days, making it easy to forget that I have AIDS, too.
I got an AIDS diagnosis 18 years ago. If not for the potent AIDS treatments that began to arrive on the scene in the late 1990s, I would be long gone.
I access all of those medications at the Kaiser pharmacy but they are paid for by the government's AIDS Drug Assistance Program. Yesterday, just by showing the Kaiser pharmacist a utility bill, my driver's license and last year's W-2 from my tax return, I was able to re-enroll in the ADAP another year.
Unless Congress usurps ADAP funds to turn over to the Big 3 auto makers, I can count on accessing my AIDS meds for another 12 months.
My last appointment at Kaiser on Wednesday was down the block in the Radiation Oncology Department.
Much as I would like to have radiologists start zapping at the cancer cells in my mouth immediately, it's not that simple. Three appointments in Radiation Oncology are required before I begin radiation therapy a week from Monday.
On Wednesday, I had the first of those three sessions, and it was action-packed.
I learned more about the treatment process. A nurse took my photograph to add to my chart. I had another CT scan, after a sheet of hot plastic was wrapped around my head, producing a mask that I will wear when I get zapped with radiation. (The guy who molded the mask says it looks just like me but I scribbled a note that said, "C'mon! You exaggerated my nose, dude!")
Finally, I got a few red dots on my face and chest, intended to last the duration of my radiation treatments.
Those dots are life-changing: I have sacrificed my distinction of being the only man in greater Los Angeles without a tattoo. A certain tattooed friend of mine will have to find something else to tease me about.
Just getting more and more manly all the time.
More humanly, at least.
Wednesday morning I headed to the Kaiser Kampus with a hefty to-do list, starting with a return appearance in the Urology Department.
Kaiser's urologist and I had a deal: If I could demonstrate my ability to pee successfully on my own, she would authorize removal of the Foley catheter I had been schlepping around since the day I left the hospital.
Just as she did one week ago, a nurse pumped my bladder full of water, removed the catheter, and then handed me a plastic container. My mission was to fill the container with enough urine to convince the urologist to liberate me from the rubber-and-plastic albatross anchored to my leg.
Michael Phelps never experienced the pressure I felt yesterday after the nurse left me alone in the exam room with the empty container. But I gave the performance of a lifetime, and left that artificial appendage behind in the medical waste bin.
From Urology, I headed across the street to the Kaiser pharmacy.
Cancer sucks up all of my attention these days, making it easy to forget that I have AIDS, too.
I got an AIDS diagnosis 18 years ago. If not for the potent AIDS treatments that began to arrive on the scene in the late 1990s, I would be long gone.
I access all of those medications at the Kaiser pharmacy but they are paid for by the government's AIDS Drug Assistance Program. Yesterday, just by showing the Kaiser pharmacist a utility bill, my driver's license and last year's W-2 from my tax return, I was able to re-enroll in the ADAP another year.
Unless Congress usurps ADAP funds to turn over to the Big 3 auto makers, I can count on accessing my AIDS meds for another 12 months.
My last appointment at Kaiser on Wednesday was down the block in the Radiation Oncology Department.
Much as I would like to have radiologists start zapping at the cancer cells in my mouth immediately, it's not that simple. Three appointments in Radiation Oncology are required before I begin radiation therapy a week from Monday.
On Wednesday, I had the first of those three sessions, and it was action-packed.
I learned more about the treatment process. A nurse took my photograph to add to my chart. I had another CT scan, after a sheet of hot plastic was wrapped around my head, producing a mask that I will wear when I get zapped with radiation. (The guy who molded the mask says it looks just like me but I scribbled a note that said, "C'mon! You exaggerated my nose, dude!")
Finally, I got a few red dots on my face and chest, intended to last the duration of my radiation treatments.
Those dots are life-changing: I have sacrificed my distinction of being the only man in greater Los Angeles without a tattoo. A certain tattooed friend of mine will have to find something else to tease me about.
Just getting more and more manly all the time.
Wednesday, January 28, 2009
Oh, that's just swell
Bleating in this blog notwithstanding, it hasn't been all gloom and doom on the Serchia homestead since I got a cancer diagnosis this month.
Since being discharged from the hospital about 10 days ago, I've been sleeping better than I had been in the weeks leading up to my tracheotomy and biopsy.
What's the reason for the improvement?
My drool output has fallen.
You see, my mouth is Charlie-the-Tuna-sized but my tongue can expand to Monstro proportions. And as my tongue swells, dribble leaks from the corners of my mouth.
During waking hours, I keep tissue close by to sop up the drool. When I sleep, however, there's little I can do to stop the flow.
To make the best out of a losing situation, before going to sleep I position my mouth directly above Jasmine's face on my Disney's Aladdin pillowcase. (Princess Jasmine, as far as I'm concerned, is the true villain in the Aladdin story, and deserves being the target of all of the yucky emissions my mouth can summon.)
In recent days, my nocturnal dribbling has slowed to a trickle. I've been sleeping better as a result, and Princess Jasmine hasn't been getting slathered in saliva throughout the night.
But what I think is happening is that my tongue is swelling even larger than before, and that serves as a dam for the drool.
With luck, it won't be long before radiation therapy and chemotherapy zap the cancer cells in my tongue and bring it back to its normal size, or as close to normal as medically possible, and I'll have a good 25 or 30 years before I will rejoin the drooling demographic.
I'm not expecting a miracle.
But I am certainly hoping for one.
Since being discharged from the hospital about 10 days ago, I've been sleeping better than I had been in the weeks leading up to my tracheotomy and biopsy.
What's the reason for the improvement?
My drool output has fallen.
You see, my mouth is Charlie-the-Tuna-sized but my tongue can expand to Monstro proportions. And as my tongue swells, dribble leaks from the corners of my mouth.
During waking hours, I keep tissue close by to sop up the drool. When I sleep, however, there's little I can do to stop the flow.
To make the best out of a losing situation, before going to sleep I position my mouth directly above Jasmine's face on my Disney's Aladdin pillowcase. (Princess Jasmine, as far as I'm concerned, is the true villain in the Aladdin story, and deserves being the target of all of the yucky emissions my mouth can summon.)
In recent days, my nocturnal dribbling has slowed to a trickle. I've been sleeping better as a result, and Princess Jasmine hasn't been getting slathered in saliva throughout the night.
But what I think is happening is that my tongue is swelling even larger than before, and that serves as a dam for the drool.
With luck, it won't be long before radiation therapy and chemotherapy zap the cancer cells in my tongue and bring it back to its normal size, or as close to normal as medically possible, and I'll have a good 25 or 30 years before I will rejoin the drooling demographic.
I'm not expecting a miracle.
But I am certainly hoping for one.
Tuesday, January 27, 2009
Stream of consciousness
When I got out of bed this morning, I took down a big sign with a red numeral 2 above my headboard and replaced it with a sign with a big 3.
The sign marks the number of nights that have passed since my last bed-wetting incident, or, as I prefer to call it, an e-pee-sode.
Yeah, I wet beds. But before I started wearing catheters less than two weeks ago, I had gone decades without swamping the sheets. (Go on and profile me as a loser, but be aware that Michael Landon, Suzanne Somers and Franklin Delano Roosevelt are all renown bed-wetters, and that groups of proud bed-wetters are everywhere on Facebook.)
Before my recent spate of accidents, you'd have to reach back to the LBJ administration to find an incident where I've lost control of my bladder.
When I was 8, my third-grade teacher Mrs. Kios had me riveted to my seat by her reading of "Old Yeller" to our class. As soon as Mrs. Kios closed the book, I rose to ask permission to leave class to use the rest room, and then immediately rendered my request moot.
Mom had to come to school to pick me up. When I returned to class the next day, I had a brand-new nickname: "Yellow River."
Even though I was blocks away from my bed at the time of that accident, and can't classify it as bed-wetting, the experience taught me a lesson that has resulted in a nocturnal dry spell of more than four decades.
This month, while I hospitalized at Kaiser for surgery, a nurse poked me with a Foley catheter because the effects of anesthesia had impaired my ability to pee. Since I have been sleeping at home, my Foley tube has broken free from the bag once, and on another occasion, I somehow tripped the lever in the bag and soaked my sheets again.
I tried to get the catheter removed on Jan. 21 in Kaiser's Urology Department, but they told me it still wasn't time. If my urologist had to make my bed every morning and launder my sheets, I bet she would have had a different story.
I'm scheduled to return to urology Wednesday morning at 9.
The tricky thing is my urologist gave me a sheet of instructions showing me how to remove the catheter myself.
She wants me to get up at 3:15 Wednesday morning to perform this delicate maneuver, so by the time of my appointment in urology, they'll know whether I did it properly. There is a balloon inflated in my bladder, you see, so I have to chop off a valve to deflate the balloon and then yank it up my urethra.
Tomorrow's appointment, I guess, is to show the urologist that I succeeded in clipping the Foley without permanently mutilating myself.
I've already decided to tell the urologist that I misplaced the instructions she gave me, and ask her to perform the procedure.
She has probably yanked hundreds of balloons out of men's bladders. If I attempted to do it, it would be my first time. I mean, the least she could have done was give me a doll to practice on.
Be my own guinea pig? No, thanks, doc. Whenever I feel like testing my surgical skills, I'll get my Operation game out of the closet.
Everything else, I'll leave to professionals.
The sign marks the number of nights that have passed since my last bed-wetting incident, or, as I prefer to call it, an e-pee-sode.
Yeah, I wet beds. But before I started wearing catheters less than two weeks ago, I had gone decades without swamping the sheets. (Go on and profile me as a loser, but be aware that Michael Landon, Suzanne Somers and Franklin Delano Roosevelt are all renown bed-wetters, and that groups of proud bed-wetters are everywhere on Facebook.)
Before my recent spate of accidents, you'd have to reach back to the LBJ administration to find an incident where I've lost control of my bladder.
When I was 8, my third-grade teacher Mrs. Kios had me riveted to my seat by her reading of "Old Yeller" to our class. As soon as Mrs. Kios closed the book, I rose to ask permission to leave class to use the rest room, and then immediately rendered my request moot.
Mom had to come to school to pick me up. When I returned to class the next day, I had a brand-new nickname: "Yellow River."
Even though I was blocks away from my bed at the time of that accident, and can't classify it as bed-wetting, the experience taught me a lesson that has resulted in a nocturnal dry spell of more than four decades.
This month, while I hospitalized at Kaiser for surgery, a nurse poked me with a Foley catheter because the effects of anesthesia had impaired my ability to pee. Since I have been sleeping at home, my Foley tube has broken free from the bag once, and on another occasion, I somehow tripped the lever in the bag and soaked my sheets again.
I tried to get the catheter removed on Jan. 21 in Kaiser's Urology Department, but they told me it still wasn't time. If my urologist had to make my bed every morning and launder my sheets, I bet she would have had a different story.
I'm scheduled to return to urology Wednesday morning at 9.
The tricky thing is my urologist gave me a sheet of instructions showing me how to remove the catheter myself.
She wants me to get up at 3:15 Wednesday morning to perform this delicate maneuver, so by the time of my appointment in urology, they'll know whether I did it properly. There is a balloon inflated in my bladder, you see, so I have to chop off a valve to deflate the balloon and then yank it up my urethra.
Tomorrow's appointment, I guess, is to show the urologist that I succeeded in clipping the Foley without permanently mutilating myself.
I've already decided to tell the urologist that I misplaced the instructions she gave me, and ask her to perform the procedure.
She has probably yanked hundreds of balloons out of men's bladders. If I attempted to do it, it would be my first time. I mean, the least she could have done was give me a doll to practice on.
Be my own guinea pig? No, thanks, doc. Whenever I feel like testing my surgical skills, I'll get my Operation game out of the closet.
Everything else, I'll leave to professionals.
Monday, January 26, 2009
Welcome to the Club
It's gonna be a heckuva winter, believe you me.
Very recently, my health situation had all of the clarity of a snow-filled television screen. Today, both my condition and the steps I will take to address it have the startling sharpness of HDTV.
Today I spent time with the Tumor Board at Kaiser Permanente, a meeting that I've been anticipating for about 10 days, after getting a diagnosis of squamous cell carcinoma from my head-and-neck surgeon.
It began on a bumbling note. The friend who took a day off from his job to accompany me for the Tumor Board appointment wanted to grab some breakfast before we checked in, so he headed to the Kaiser cafeteria while I picked up a bottle of liquid Extra-Strength Tylenol in the pharmacy.
When we met in the cafeteria, I was feeling a headache coming on. So as my friend munched on a strip of bacon, I filled a cup of cherry-flavored Tylenol, whipped out my G-tube and began to pour the red fluid into a syringe. (Ever hear the Rolling Stones perform "You Can't Always Get What You Want"? When Jagger wails, "What's my favorite flavor? CHERRY RED!" it's liquid Extra-Strength Tylenol that he is singing about.)
Just because I have never seen anyone using a G-tube in public doesn't mean that I can't be the guy to bring G-tube feedings out of the shadows into brightly lit public spaces.
The syringe was too big for the tube, so Tylenol started flowing all over my hand, the table and floor. My hapless friend set his bacon down to grab a fistful of napkins and began mopping up the cherry-red fluid hemorrhaging from the syringe and on the floor.
Even after dealing with the Tylenol crisis in the cafeteria, my friend and I arrived a full hour early for the Tumor Board appointment.
A nurse in Pepto-Bismol-hued scrubs came over to explain the process for the morning, and to hand off some paperwork, including an application to register for services of the American Cancer Society.
Soon, I was led to an exam room, with my friend beside me to facilitate communication and to contain any further cherry-red Tylenol spills. I had about a dozen questions written out, and my friend had a list of questions that an R.N. had suggested asking, so having a sidekick present was a real help.
The first member of the Tumor Board we met was Dr. Jergin Chen. Dr. Chen conducted a brief, yet probing interview about my condition, and attempted to look at my mouth. I can't open my mouth very wide, however, and my swollen tongue makes it difficult to see anything in it. To continue the examination, we moved to an exam room across the hall, where I met three more members of the Tumor Board.
There, my nostrils were sprayed with some kind of numbing solution, and small video cameras were inserted into my nose and down my throat. Just inches away was a monitor displaying the images. I kept my eyes clenched tight throughout this procedure. I never have liked looking at photos of myself, especially not moving images of my inner organs.
After that, the Tumor Board collected its data and went into conference, and my friend and I returned to the original exam room.
An hour or so later, Dr. Chen returned to report on the Tumor Board's findings.
My cancer is an unusual presentation, Dr. Chen explained, but fortunately that does not preclude treatment. Two weeks from today, I will begin radiation therapy, and continue daily treatments for 33 sessions, Monday through Friday. Dr. Chen said that this will be the most radiation that can be administered safely. During that course of treatment, I also will have three sessions of infusion chemotherapy, which is intended to boost the effectiveness of the radiation therapy.
Side effects may not kick in for two or three weeks, and may include mouth sores, sore throat and dryness of my mouth, along with some hair loss in the lower part of my head, and possible hearing loss.
The best outcome for the treatment, according to Dr. Chen, is increased function of my tongue but I can't expect it going back to how it was before cancer arrived on the scene. Whether I will be able to return to eating through my mouth depends on how my tongue reacts to treatment.
I have high confidence in the expertise of the Kaiser Radiation Oncology Department, and I'm comfortable with the course of treatment that Dr. Chen outlined today. As a friend e-mailed to me this afternoon, at least no scalpel is involved.
The next step, set for Wednesday, is getting a CT scan. A week from today, I will have X-rays made of me in the treatment position, and the treatment machine will be set up. And then, on Monday, Feb. 9, I'll begin the treatment sessions.
So it's official: I'm a member of the "Cancer Club" that my friend living with breast cancer mentioned the other day.
Don't know if the club has a theme song, like the club that Annette and Tommy and Cubby once led. If it does, you'll read about it here.
Very recently, my health situation had all of the clarity of a snow-filled television screen. Today, both my condition and the steps I will take to address it have the startling sharpness of HDTV.
Today I spent time with the Tumor Board at Kaiser Permanente, a meeting that I've been anticipating for about 10 days, after getting a diagnosis of squamous cell carcinoma from my head-and-neck surgeon.
It began on a bumbling note. The friend who took a day off from his job to accompany me for the Tumor Board appointment wanted to grab some breakfast before we checked in, so he headed to the Kaiser cafeteria while I picked up a bottle of liquid Extra-Strength Tylenol in the pharmacy.
When we met in the cafeteria, I was feeling a headache coming on. So as my friend munched on a strip of bacon, I filled a cup of cherry-flavored Tylenol, whipped out my G-tube and began to pour the red fluid into a syringe. (Ever hear the Rolling Stones perform "You Can't Always Get What You Want"? When Jagger wails, "What's my favorite flavor? CHERRY RED!" it's liquid Extra-Strength Tylenol that he is singing about.)
Just because I have never seen anyone using a G-tube in public doesn't mean that I can't be the guy to bring G-tube feedings out of the shadows into brightly lit public spaces.
The syringe was too big for the tube, so Tylenol started flowing all over my hand, the table and floor. My hapless friend set his bacon down to grab a fistful of napkins and began mopping up the cherry-red fluid hemorrhaging from the syringe and on the floor.
Even after dealing with the Tylenol crisis in the cafeteria, my friend and I arrived a full hour early for the Tumor Board appointment.
A nurse in Pepto-Bismol-hued scrubs came over to explain the process for the morning, and to hand off some paperwork, including an application to register for services of the American Cancer Society.
Soon, I was led to an exam room, with my friend beside me to facilitate communication and to contain any further cherry-red Tylenol spills. I had about a dozen questions written out, and my friend had a list of questions that an R.N. had suggested asking, so having a sidekick present was a real help.
The first member of the Tumor Board we met was Dr. Jergin Chen. Dr. Chen conducted a brief, yet probing interview about my condition, and attempted to look at my mouth. I can't open my mouth very wide, however, and my swollen tongue makes it difficult to see anything in it. To continue the examination, we moved to an exam room across the hall, where I met three more members of the Tumor Board.
There, my nostrils were sprayed with some kind of numbing solution, and small video cameras were inserted into my nose and down my throat. Just inches away was a monitor displaying the images. I kept my eyes clenched tight throughout this procedure. I never have liked looking at photos of myself, especially not moving images of my inner organs.
After that, the Tumor Board collected its data and went into conference, and my friend and I returned to the original exam room.
An hour or so later, Dr. Chen returned to report on the Tumor Board's findings.
My cancer is an unusual presentation, Dr. Chen explained, but fortunately that does not preclude treatment. Two weeks from today, I will begin radiation therapy, and continue daily treatments for 33 sessions, Monday through Friday. Dr. Chen said that this will be the most radiation that can be administered safely. During that course of treatment, I also will have three sessions of infusion chemotherapy, which is intended to boost the effectiveness of the radiation therapy.
Side effects may not kick in for two or three weeks, and may include mouth sores, sore throat and dryness of my mouth, along with some hair loss in the lower part of my head, and possible hearing loss.
The best outcome for the treatment, according to Dr. Chen, is increased function of my tongue but I can't expect it going back to how it was before cancer arrived on the scene. Whether I will be able to return to eating through my mouth depends on how my tongue reacts to treatment.
I have high confidence in the expertise of the Kaiser Radiation Oncology Department, and I'm comfortable with the course of treatment that Dr. Chen outlined today. As a friend e-mailed to me this afternoon, at least no scalpel is involved.
The next step, set for Wednesday, is getting a CT scan. A week from today, I will have X-rays made of me in the treatment position, and the treatment machine will be set up. And then, on Monday, Feb. 9, I'll begin the treatment sessions.
So it's official: I'm a member of the "Cancer Club" that my friend living with breast cancer mentioned the other day.
Don't know if the club has a theme song, like the club that Annette and Tommy and Cubby once led. If it does, you'll read about it here.
Sunday, January 25, 2009
Sharing stories from the front lines
I don't know where my cancer trajectory will lead, but I do know that others have been down this path.
In the past few days, friends with whom I had lost touch have stepped forward to share their experiences with cancer.
One of these friends, a man I met while helping to organize the 1987 March on Washington for Lesbian and Gay Rights, learned of my situation through a mutual friend. In an e-mail, he described his situation as "pretty low on the cancer scale."
"My situation is so mild I tend to think of it as Cancer Lite," he quipped. "It was early, slow-growing and very treatable."
The other friend, a co-worker from many years ago, heard about my diagnosis in an e-mail with other former employees of the nonprofit where we met. She told me that she is also a member of the "Cancer Club," having battled breast cancer with chemo and radiation therapy. "I am an old hand at the cancer game," she said.
My friend went on to disclose what she described as the worst part of her experience: learning that her child had a brain tumor. Since then, her child has had surgery and radiation.
"She is amazing," my friend wrote. "She had to learn to walk and talk again. A year later, she is in swim class and finished circus camp. She is my hero."
Last month, I met a deputy of a local legislator at a work function. He had arrived after a photographer working our event had left, and I was asked to take a photo of him with a certificate of commendation he brought from Washington, D.C.
After I took the photo, the legislative deputy struck up a conversation with me, which required me to jot down my responses in my note pad.
In minutes, I told him that I was in the middle of medical appointments to determine why I was unable to speak and swallow, and he told me that he had found himself in a similar situation many years ago. He said that he went many years without a satisfactory diagnosis until a neurologist at a local university examined him, pinpointed the cause of his problems, and set him on the road to treatment and recovery.
He said he hoped that I would find the cause of my problems. I thought to myself that I didn't have the patience to wait years to find out what is wrong.
I've already turned the corner in my situation by getting a cancer diagnosis. Tomorrow I will meet with the Tumor Board at Kaiser and by the end of the day, I hope to have an understanding of what it will require to treat this disease and continuing with my life.
I don't think that I would describe my illness as "Cancer Lite"; this disease already has resulted in a hole in my throat and another in my stomach. On the other hand, whatever lies ahead for me cannot possibly be as difficult as it would be for someone to watch his or her child suffer.
I'm not being glib, but I expect to join the ranks of cancer survivors. Just as my friends with cancer are today helping me cope with my fears, five or 10 or 15 years from now, I want to be able to give others hope.
In the past few days, friends with whom I had lost touch have stepped forward to share their experiences with cancer.
One of these friends, a man I met while helping to organize the 1987 March on Washington for Lesbian and Gay Rights, learned of my situation through a mutual friend. In an e-mail, he described his situation as "pretty low on the cancer scale."
"My situation is so mild I tend to think of it as Cancer Lite," he quipped. "It was early, slow-growing and very treatable."
The other friend, a co-worker from many years ago, heard about my diagnosis in an e-mail with other former employees of the nonprofit where we met. She told me that she is also a member of the "Cancer Club," having battled breast cancer with chemo and radiation therapy. "I am an old hand at the cancer game," she said.
My friend went on to disclose what she described as the worst part of her experience: learning that her child had a brain tumor. Since then, her child has had surgery and radiation.
"She is amazing," my friend wrote. "She had to learn to walk and talk again. A year later, she is in swim class and finished circus camp. She is my hero."
Last month, I met a deputy of a local legislator at a work function. He had arrived after a photographer working our event had left, and I was asked to take a photo of him with a certificate of commendation he brought from Washington, D.C.
After I took the photo, the legislative deputy struck up a conversation with me, which required me to jot down my responses in my note pad.
In minutes, I told him that I was in the middle of medical appointments to determine why I was unable to speak and swallow, and he told me that he had found himself in a similar situation many years ago. He said that he went many years without a satisfactory diagnosis until a neurologist at a local university examined him, pinpointed the cause of his problems, and set him on the road to treatment and recovery.
He said he hoped that I would find the cause of my problems. I thought to myself that I didn't have the patience to wait years to find out what is wrong.
I've already turned the corner in my situation by getting a cancer diagnosis. Tomorrow I will meet with the Tumor Board at Kaiser and by the end of the day, I hope to have an understanding of what it will require to treat this disease and continuing with my life.
I don't think that I would describe my illness as "Cancer Lite"; this disease already has resulted in a hole in my throat and another in my stomach. On the other hand, whatever lies ahead for me cannot possibly be as difficult as it would be for someone to watch his or her child suffer.
I'm not being glib, but I expect to join the ranks of cancer survivors. Just as my friends with cancer are today helping me cope with my fears, five or 10 or 15 years from now, I want to be able to give others hope.
Saturday, January 24, 2009
Following Charlie's beat
Charlie Watts is the only member of the Rolling Stones I've met face to face.
On June 13, 1986, I was walking down La Brea Avenue, just south of Hollywood Boulevard, after leaving the gym. I stopped into a liquor store to grab a soda and as I walked out, Charlie stepped in.
I froze.
I am a huge fan of the Stones and have been since 1972, the year of the band's triumphant tour of the U.S. and artistic zenith. That year, I found the Stones' compilation "Hot Rocks" under the Christmas tree, and by fall of 1973 I had collected all of their albums to date.
In 1986, however, the Stones were slipping. I bought their latest album "Dirty Work" on the day of its release that year. Side 1 was such a crushing disappointment, I didn't even play Side 2 that night. Instead, I decided to tune into the Oscars, feeling sad that I would rather watch an awards show than listen to new music by my favorite band.
The Stones weren't touring behind "Dirty Work"; instead, there were signs that the band was in danger of splitting up.
Charlie, the band's drummer, looked distracted on the cover of "Dirty Work" –maybe "embarrassed" better describes his demeanor– and he wasn't his usual dapper self when I saw him enter the store on La Brea. His jazz band was performing at the Hollywood Bowl that very night. I wasn't going to see Charlie at the Bowl, but I wasn't about to pass up an opportunity to meet him for free.
I stood on the sidewalk for about 15 minutes waiting for Charlie to exit. When he did, he had two bags filled with bottles of liquor.
I walked up to Charlie and extended my hand. "Hello, Mr. Watts," I said, shakily. I was in danger of melting.
Charlie seemed taken aback, but he said "Hello" and offered his hand in return. This encounter took place five years after John Lennon's murder by a crazed fan, so I have to give Charlie credit for not running away from me.
I gushed some appreciation for his work, and then asked for his autograph, fumbling for a piece of paper and pen. Charlie signed his name, and then we went separate ways.
Twenty-two years later, my path again is looping back again to Charlie's.
In 2004, Charlie got a diagnosis of throat cancer. He immediately began treatment at London's Royal Marsden Hospital and had him lymph nodes removed. "When they do that the muscles go," Charlie said, in an interview with the Daily Express. "You can't lift your arm. It's like being paralyzed. It was a worry because of what I do for a living."
The cancer went into remission. The next year, he and the rest of the Stones embarked on a multi-year, worldwide tour that, in my opinion, saw Charlie playing better and stronger than ever.
The other day, I visited a forum on It's Only Rock 'n' Roll, a Stones fan site where I post under the name Monkeylad. I told fellow Stones fans about my condition, and asked for background information about Charlie's brush with cancer.
My spirits have soared as I watch get-well wishes and words of encouragement pile up in the thread I began.
For Stones fans, the tongue is a pretty important part of the body; it's been the Stones' logo for the past 39 years. So it's a thrill to add the international community of Stones fans to my support network.
And I'd like to think that Charlie Watts, who has maintained a steady beat for the Rolling Stones since 1962, passed on some of his strength to beat cancer to me when we shook hands on a sidewalk in Hollywood in 1986.
Although Charlie's handshake certainly didn't make me a good drummer.
On June 13, 1986, I was walking down La Brea Avenue, just south of Hollywood Boulevard, after leaving the gym. I stopped into a liquor store to grab a soda and as I walked out, Charlie stepped in.
I froze.
I am a huge fan of the Stones and have been since 1972, the year of the band's triumphant tour of the U.S. and artistic zenith. That year, I found the Stones' compilation "Hot Rocks" under the Christmas tree, and by fall of 1973 I had collected all of their albums to date.
In 1986, however, the Stones were slipping. I bought their latest album "Dirty Work" on the day of its release that year. Side 1 was such a crushing disappointment, I didn't even play Side 2 that night. Instead, I decided to tune into the Oscars, feeling sad that I would rather watch an awards show than listen to new music by my favorite band.
The Stones weren't touring behind "Dirty Work"; instead, there were signs that the band was in danger of splitting up.
Charlie, the band's drummer, looked distracted on the cover of "Dirty Work" –maybe "embarrassed" better describes his demeanor– and he wasn't his usual dapper self when I saw him enter the store on La Brea. His jazz band was performing at the Hollywood Bowl that very night. I wasn't going to see Charlie at the Bowl, but I wasn't about to pass up an opportunity to meet him for free.
I stood on the sidewalk for about 15 minutes waiting for Charlie to exit. When he did, he had two bags filled with bottles of liquor.
I walked up to Charlie and extended my hand. "Hello, Mr. Watts," I said, shakily. I was in danger of melting.
Charlie seemed taken aback, but he said "Hello" and offered his hand in return. This encounter took place five years after John Lennon's murder by a crazed fan, so I have to give Charlie credit for not running away from me.
I gushed some appreciation for his work, and then asked for his autograph, fumbling for a piece of paper and pen. Charlie signed his name, and then we went separate ways.
Twenty-two years later, my path again is looping back again to Charlie's.
In 2004, Charlie got a diagnosis of throat cancer. He immediately began treatment at London's Royal Marsden Hospital and had him lymph nodes removed. "When they do that the muscles go," Charlie said, in an interview with the Daily Express. "You can't lift your arm. It's like being paralyzed. It was a worry because of what I do for a living."
The cancer went into remission. The next year, he and the rest of the Stones embarked on a multi-year, worldwide tour that, in my opinion, saw Charlie playing better and stronger than ever.
The other day, I visited a forum on It's Only Rock 'n' Roll, a Stones fan site where I post under the name Monkeylad. I told fellow Stones fans about my condition, and asked for background information about Charlie's brush with cancer.
My spirits have soared as I watch get-well wishes and words of encouragement pile up in the thread I began.
For Stones fans, the tongue is a pretty important part of the body; it's been the Stones' logo for the past 39 years. So it's a thrill to add the international community of Stones fans to my support network.
And I'd like to think that Charlie Watts, who has maintained a steady beat for the Rolling Stones since 1962, passed on some of his strength to beat cancer to me when we shook hands on a sidewalk in Hollywood in 1986.
Although Charlie's handshake certainly didn't make me a good drummer.
Friday, January 23, 2009
Words can't hurt you
The best way to confront fear is to look at it from a fresh perspective.
For me, that means expressing whatever is freaking me out into a few words, writing those words down, and asking myself:
"Say, can I make this into an anagram?"
An anagram of a word or phrase is the same letters in a different order. An anagram of the name ROD BLAGOJEVICH, for example, happens to be:
HI! CRAVE GOLD JOB?
See how the anagram helps you understand that nutjob governor of Illinois just a little better? (Don't ask me why the word "anagram" itself is not an anagram of anything, or why the word "palindrome" is not a palindrome.)
My point is, when I know the anagram of something, I understand it better. And if the thing scares me, the fear goes away.
A few Wednesdays ago my friend Chuck brought me to Kaiser Hospital so I could check in for surgery: a tracheotomy and a biopsy of my tongue.
The tracheotomy part of the procedure had me freaking out until I sat down with a pencil and pad of paper and discovered that TRACHEOTOMY is just another way of saying:
MY OTHER TACO
When I woke up in the recovery room late that afternoon and felt my neck, I said, "Oh, this must be my other taco." Made a potentially harrowing realization almost fun.
Right now, I am spooked about the next milestone in my cancer odyssey. On Monday, I am seeing my head and neck surgeon and then will head to Kaiser's Tumor Board.
As I understand it, the Tumor Board will review my case and then evaluate me. Then they will disappear behind closed doors and discuss what they see.
When I reunite with the Tumor Board later in the day, they will have a recommendation for treatment of my cancer.
I am spooked in a major way about the Tumor Board. Before last week, I had never heard of a Tumor Board before. To confront it for the first time and realize that it likely will shape my future with this disease is pretty nerve-rattling. (A friend sought to allay my fears by telling me that a Tumor Board is "like a surf board but with more lumps.")
But then I sat down to reshuffle the letters in TUMOR BOARD. Here's what I came up with:
A TURD BROOM
BAD TO RUMOR
RAT BUM ODOR
B.M. RUT? OR D.O.A.?
DUMB ORATOR
I'm aware that those anagrams make little sense. They may even reveal more about me than they reveal about the Tumor Board. And no disrespect is intended on my part; I have been blown away by the quality of care that I have received at Kaiser since becoming a patient there.
But the Tumor Board isn't nearly so frightening to me now. What good is fear, anyhow?
What was it that F.D.R. once said? All we have to fear is FIT ELF EARS . . . or IF EELS FART . . . or A RIFLE FEST . . . or . . .
For me, that means expressing whatever is freaking me out into a few words, writing those words down, and asking myself:
"Say, can I make this into an anagram?"
An anagram of a word or phrase is the same letters in a different order. An anagram of the name ROD BLAGOJEVICH, for example, happens to be:
HI! CRAVE GOLD JOB?
See how the anagram helps you understand that nutjob governor of Illinois just a little better? (Don't ask me why the word "anagram" itself is not an anagram of anything, or why the word "palindrome" is not a palindrome.)
My point is, when I know the anagram of something, I understand it better. And if the thing scares me, the fear goes away.
A few Wednesdays ago my friend Chuck brought me to Kaiser Hospital so I could check in for surgery: a tracheotomy and a biopsy of my tongue.
The tracheotomy part of the procedure had me freaking out until I sat down with a pencil and pad of paper and discovered that TRACHEOTOMY is just another way of saying:
MY OTHER TACO
When I woke up in the recovery room late that afternoon and felt my neck, I said, "Oh, this must be my other taco." Made a potentially harrowing realization almost fun.
Right now, I am spooked about the next milestone in my cancer odyssey. On Monday, I am seeing my head and neck surgeon and then will head to Kaiser's Tumor Board.
As I understand it, the Tumor Board will review my case and then evaluate me. Then they will disappear behind closed doors and discuss what they see.
When I reunite with the Tumor Board later in the day, they will have a recommendation for treatment of my cancer.
I am spooked in a major way about the Tumor Board. Before last week, I had never heard of a Tumor Board before. To confront it for the first time and realize that it likely will shape my future with this disease is pretty nerve-rattling. (A friend sought to allay my fears by telling me that a Tumor Board is "like a surf board but with more lumps.")
But then I sat down to reshuffle the letters in TUMOR BOARD. Here's what I came up with:
A TURD BROOM
BAD TO RUMOR
RAT BUM ODOR
B.M. RUT? OR D.O.A.?
DUMB ORATOR
I'm aware that those anagrams make little sense. They may even reveal more about me than they reveal about the Tumor Board. And no disrespect is intended on my part; I have been blown away by the quality of care that I have received at Kaiser since becoming a patient there.
But the Tumor Board isn't nearly so frightening to me now. What good is fear, anyhow?
What was it that F.D.R. once said? All we have to fear is FIT ELF EARS . . . or IF EELS FART . . . or A RIFLE FEST . . . or . . .
Thursday, January 22, 2009
Trach couture
Marilyn, the home health aide from Kaiser who paid a call on me on Sunday afternoon, suggested that I wear a scarf to conceal my trach tube when I go out.
I didn't take offense.
I know what kind of a town this is. L.A. is a place where one entire section of the home town newspaper is dedicated to "Image." Angelenos spend untold hours in gyms and salons and before mirrors honing their look, and the last time I flipped through GQ and Men's Fitness, a plastic tube in the middle of one's throat was not considered to be an object of male beauty.
I'm not ashamed of my trach –rhymes with "brake," by the way– but I also don't want to creep people out, either. And once you venture beyond the gate in the parking lot at Leisure Village, spotting a naked trach in public is still uncommon.
My challenge is that I have never been a scarf kinda guy.
Since Sunday I've been struggling with exactly what kind of scarf I could wear well without drawing more attention to myself than I would by exposing the trach.
Forty-three years ago, Beatles scarves were popular. But how would that kind of scarf go over while stretching out on chaise lounge during a Palm Springs getaway?
Charles Nelson Reilly always managed to flaunt his neckwear with élan, and so did
Thurston Howell III, as played by Jim Backus. But I'd feel compelled to develop a funny accent to complement that kind of scarf, and I'm not capable of talking at all.
And there's something to be said for the simplicity of Speedy Gonzales' approach. But at a stage in my life when I'm struggling with life-and-death challenges, do I really want to start adapting lifestyle tips from animated rodents?
I don't have to decide on my own unique look right this minute, although Marilyn is paying another call this afternoon and she might query me on my progress with the scarf question.
This morning, I had a chance to experiment with some neck gear.
I needed to visit the Bureau of Parking Violations in Van Nuys to get a residential parking permit. Since I came home from the hospital on Saturday, friends have called to say they want to see me and sign my Foley catheter, and I want to be sure that when they do, they have a place to park.
Today's weather is reasonably wintry, so before leaving the apartment, I wrapped a scarf that my sister-in-law and brother sent me at Christmas around my neck.
Not only did the scarf hide the trach completely, it went well with my pajama bottoms. It even gave me a certain Marlo Thomas-"That Girl" feeling when I strutted down Van Nuys Boulevard.
As I sat in the Bureau of Parking Violations and waited for my number to be called, I eavesdropped on the people stepping up to the counter. Most of them were there to resolve parking infractions, and begged for mercy from the bureaucrat on the other side of the glass.
When my turn arrived, I slipped a note through the window telling the woman I can't talk and that I wanted a parking permit. I threw in a chirpy "Good morning!" and came very close to writing "Nice blouse! What do you think of my scarf?"
The woman carefully read my note and then picked up a pen to reply. "Is this your first time here?" she wrote.
Below her question, I wrote "No, and I can hear fine, thank you."
She chose to continue the conversation by writing, rather slowly, "Do you want one permit or two?"
I was tempted to repeat "I CAN HEAR FINE" and underscore it, but I realized that kind of attitude was the reason the City of Los Angeles pays a fulltime salary to a security guard of the Parking Violations Bureau, even though I imagine that outbreaks of violence there are rare.
I paid $22.50 for the permit and headed home. I'm now waiting for my home health nurse Marilyn to arrive.
I'll let Marilyn use my parking permit while she is here.
And if she doesn't mention my damn scarf, I swear that steam will puff out of my trach.
Update
Marilyn didn't come to my apartment today for my Kaiser home health visit. Liza did.
Do all Kaiser home health nurses share names with gay icons? Can I expect to have visits with Marlene, Bette D., Judy, Bette M., Madonna, Christina and Britney?
I may never know. Kaiser home health has closed my case, gently, pending a decision on when I will return to work. Meanwhile, paperwork for APLA's home health program is headed my way.
To the best of my knowledge, the APLA Home Health nurses do not have the same names as gay icons.
I didn't take offense.
I know what kind of a town this is. L.A. is a place where one entire section of the home town newspaper is dedicated to "Image." Angelenos spend untold hours in gyms and salons and before mirrors honing their look, and the last time I flipped through GQ and Men's Fitness, a plastic tube in the middle of one's throat was not considered to be an object of male beauty.
I'm not ashamed of my trach –rhymes with "brake," by the way– but I also don't want to creep people out, either. And once you venture beyond the gate in the parking lot at Leisure Village, spotting a naked trach in public is still uncommon.
My challenge is that I have never been a scarf kinda guy.
Since Sunday I've been struggling with exactly what kind of scarf I could wear well without drawing more attention to myself than I would by exposing the trach.
Forty-three years ago, Beatles scarves were popular. But how would that kind of scarf go over while stretching out on chaise lounge during a Palm Springs getaway?
Charles Nelson Reilly always managed to flaunt his neckwear with élan, and so did
Thurston Howell III, as played by Jim Backus. But I'd feel compelled to develop a funny accent to complement that kind of scarf, and I'm not capable of talking at all.
And there's something to be said for the simplicity of Speedy Gonzales' approach. But at a stage in my life when I'm struggling with life-and-death challenges, do I really want to start adapting lifestyle tips from animated rodents?
I don't have to decide on my own unique look right this minute, although Marilyn is paying another call this afternoon and she might query me on my progress with the scarf question.
This morning, I had a chance to experiment with some neck gear.
I needed to visit the Bureau of Parking Violations in Van Nuys to get a residential parking permit. Since I came home from the hospital on Saturday, friends have called to say they want to see me and sign my Foley catheter, and I want to be sure that when they do, they have a place to park.
Today's weather is reasonably wintry, so before leaving the apartment, I wrapped a scarf that my sister-in-law and brother sent me at Christmas around my neck.
Not only did the scarf hide the trach completely, it went well with my pajama bottoms. It even gave me a certain Marlo Thomas-"That Girl" feeling when I strutted down Van Nuys Boulevard.
As I sat in the Bureau of Parking Violations and waited for my number to be called, I eavesdropped on the people stepping up to the counter. Most of them were there to resolve parking infractions, and begged for mercy from the bureaucrat on the other side of the glass.
When my turn arrived, I slipped a note through the window telling the woman I can't talk and that I wanted a parking permit. I threw in a chirpy "Good morning!" and came very close to writing "Nice blouse! What do you think of my scarf?"
The woman carefully read my note and then picked up a pen to reply. "Is this your first time here?" she wrote.
Below her question, I wrote "No, and I can hear fine, thank you."
She chose to continue the conversation by writing, rather slowly, "Do you want one permit or two?"
I was tempted to repeat "I CAN HEAR FINE" and underscore it, but I realized that kind of attitude was the reason the City of Los Angeles pays a fulltime salary to a security guard of the Parking Violations Bureau, even though I imagine that outbreaks of violence there are rare.
I paid $22.50 for the permit and headed home. I'm now waiting for my home health nurse Marilyn to arrive.
I'll let Marilyn use my parking permit while she is here.
And if she doesn't mention my damn scarf, I swear that steam will puff out of my trach.
Update
Marilyn didn't come to my apartment today for my Kaiser home health visit. Liza did.
Do all Kaiser home health nurses share names with gay icons? Can I expect to have visits with Marlene, Bette D., Judy, Bette M., Madonna, Christina and Britney?
I may never know. Kaiser home health has closed my case, gently, pending a decision on when I will return to work. Meanwhile, paperwork for APLA's home health program is headed my way.
To the best of my knowledge, the APLA Home Health nurses do not have the same names as gay icons.
Wednesday, January 21, 2009
I'm still, like, totally tubular
The No. 1 priority for me this morning, if you'll pardon the expression, was shedding my Foley catheter.
My Foley catheter is the freshest and least admired of my three tubes. It was installed early Saturday morning while I was hospitalized because I was reaching for the urine bottle every five minutes but could barely eke out more than a drop of pee at a time.
The nurse told me that morning she would do an ultrasound of my bladder, and if the scan showed that I was retaining more than 200 ml of fluid, they would remove it with a tube. According to the ultrasound, my bladder was holding 1600 ml of fluid.
The nurse performed what she called an "in and out," and then she left me alone so she could tend to the needs of my new roommate, another cancer patient who had just been wheeled into the room following surgery.
Barely minutes after the fluid was extracted, I had to pee again, so the nurse called my doctor, who ordered the Foley catheter.
If Frederick Foley were alive today, I would dash off a thank-you note to him for his clever invention. But following one bona fide accident in bed on Sunday night, and a close call in the front seat of a friend's car on Monday morning, I was eager to flush the Foley out of my life.
On Tuesday, Kaiser's urology department called to schedule the removal of the catheter, and initially gave me an appointment two weeks away. A friend who is serving as my liaison with Kaiser e-mailed me to find out if he should try to get the appointment moved up, and I shot back, "Heck yes!"
My friend pulled off another miracle for me, getting me into urology the first slot this morning.
The visit was action-packed from the get-go. It began with a prostate exam, then the Foley catheter was removed, and then the nurse practitioner shot water into my bladder to see how successfully I eliminated it on my own.
I didn't do so well. So I got a brand-new Foley catheter and was told to come back in a week.
The lesson learned today is that I can't hasten the healing process. If I need to keep a tube in my bladder and drag around a plastic bag of pee for another seven days, there's no shortcut to completing that process sooner.
I just have to be patient, and to focus on the biggest challenge: treating and beating my cancer.
By the way, my friend whose car barely escaped a Katrina-sized Foley disaster on Monday morning suggests that I look into buying a set of rubber sheets.
I don't think he is joking.
My Foley catheter is the freshest and least admired of my three tubes. It was installed early Saturday morning while I was hospitalized because I was reaching for the urine bottle every five minutes but could barely eke out more than a drop of pee at a time.
The nurse told me that morning she would do an ultrasound of my bladder, and if the scan showed that I was retaining more than 200 ml of fluid, they would remove it with a tube. According to the ultrasound, my bladder was holding 1600 ml of fluid.
The nurse performed what she called an "in and out," and then she left me alone so she could tend to the needs of my new roommate, another cancer patient who had just been wheeled into the room following surgery.
Barely minutes after the fluid was extracted, I had to pee again, so the nurse called my doctor, who ordered the Foley catheter.
If Frederick Foley were alive today, I would dash off a thank-you note to him for his clever invention. But following one bona fide accident in bed on Sunday night, and a close call in the front seat of a friend's car on Monday morning, I was eager to flush the Foley out of my life.
On Tuesday, Kaiser's urology department called to schedule the removal of the catheter, and initially gave me an appointment two weeks away. A friend who is serving as my liaison with Kaiser e-mailed me to find out if he should try to get the appointment moved up, and I shot back, "Heck yes!"
My friend pulled off another miracle for me, getting me into urology the first slot this morning.
The visit was action-packed from the get-go. It began with a prostate exam, then the Foley catheter was removed, and then the nurse practitioner shot water into my bladder to see how successfully I eliminated it on my own.
I didn't do so well. So I got a brand-new Foley catheter and was told to come back in a week.
The lesson learned today is that I can't hasten the healing process. If I need to keep a tube in my bladder and drag around a plastic bag of pee for another seven days, there's no shortcut to completing that process sooner.
I just have to be patient, and to focus on the biggest challenge: treating and beating my cancer.
By the way, my friend whose car barely escaped a Katrina-sized Foley disaster on Monday morning suggests that I look into buying a set of rubber sheets.
I don't think he is joking.
Tuesday, January 20, 2009
When presidential gets personal
Any presidential inaugural address that alludes to Judy Garland and Liza Minnelli is A-OK in my book.
I'm referring to the line in President Obama's speech today that called on Americans to "pick ourselves up, dust ourselves off, and begin again the work of remaking America."
Judy and Liza and Fred and Ginger and Frank all sang about the virtues of starting fresh following a stumble and starting anew, and now President Obama has joined their ranks.
I listened to the president while laying on my sofa built for a Munchkin, which forces me to dangle my legs over the side whenever I want to lay flat on my back.
I had grand ambitions of watching the inaugural address in a public space this morning, with the Jumbotron at CityWalk and the monitors outside of the CNN building in Hollywood being my two favorite options.
I went to Ralph's early this morning to get the newspapers and five bucks in quarters so I could launder the sheets that got soiled when my Foley catheter busted its gut on Sunday night. The self-serve check out line was down, so I had no choice but to stand in a long line of shoppers, behind a young mother cooing over her baby in the basket of her shopping cart.
Secretions building in my trach tube were causing me to emit Darth Vader-like wheezes, which caught the attention of the young mom. After one glimpse of me and my swollen tongue, mom shielded her baby by dropping a blanket over the bassinet.
Maybe it's too soon in my recovery from surgery to mingle with the masses, I figured. I decided to head back to the apartment to watch today's historic moment on line.
When 9 o'clock rolled around, I was too bushed (pun intended) to walk five paces from the sofa to the computer, so I listened to the speech on the radio. (KLOS-FM, too, made history this morning, by going an entire hour without playing a single Led Zeppelin tune, allowing for the presidential address.)
President Obama said exactly what I needed to hear, as an American and as a brand-new cancer patient. The challenges he described were both broad and personal, and the president made me believe that they can and will be conquered.
You surely heard President Obama, too. My hope is that he connected with you in a way that is just as profound.
In time, a phrase or two may emerge to define this inaugural address. For me, that phrase is the excerpt of the song President Obama chose as one of the vehicles to carry his message. Titled "Pick Yourself Up," it was popular during one of the worst years of the Great Depression. Liza first brought it to my attention, many years ago, following in her mom's footsteps.
Nothing's impossible I have found,
For when my chin is on the ground,
I pick myself up,
Dust myself off,
Start all over again.
Don't lose your confidence if you slip,
Be grateful for a pleasant trip,
And pick yourself up,
Dust yourself off,
Start all over again.
Work like a soul inspired,
Till the battle of the day is won.
You may be sick and tired,
But you'll be a man, my son!
Will you remember the famous men,
Who had to fall to rise again?
So take a deep breath,
Pick yourself up,
Dust yourself off,
Start all over again.
I'm referring to the line in President Obama's speech today that called on Americans to "pick ourselves up, dust ourselves off, and begin again the work of remaking America."
Judy and Liza and Fred and Ginger and Frank all sang about the virtues of starting fresh following a stumble and starting anew, and now President Obama has joined their ranks.
I listened to the president while laying on my sofa built for a Munchkin, which forces me to dangle my legs over the side whenever I want to lay flat on my back.
I had grand ambitions of watching the inaugural address in a public space this morning, with the Jumbotron at CityWalk and the monitors outside of the CNN building in Hollywood being my two favorite options.
I went to Ralph's early this morning to get the newspapers and five bucks in quarters so I could launder the sheets that got soiled when my Foley catheter busted its gut on Sunday night. The self-serve check out line was down, so I had no choice but to stand in a long line of shoppers, behind a young mother cooing over her baby in the basket of her shopping cart.
Secretions building in my trach tube were causing me to emit Darth Vader-like wheezes, which caught the attention of the young mom. After one glimpse of me and my swollen tongue, mom shielded her baby by dropping a blanket over the bassinet.
Maybe it's too soon in my recovery from surgery to mingle with the masses, I figured. I decided to head back to the apartment to watch today's historic moment on line.
When 9 o'clock rolled around, I was too bushed (pun intended) to walk five paces from the sofa to the computer, so I listened to the speech on the radio. (KLOS-FM, too, made history this morning, by going an entire hour without playing a single Led Zeppelin tune, allowing for the presidential address.)
President Obama said exactly what I needed to hear, as an American and as a brand-new cancer patient. The challenges he described were both broad and personal, and the president made me believe that they can and will be conquered.
You surely heard President Obama, too. My hope is that he connected with you in a way that is just as profound.
In time, a phrase or two may emerge to define this inaugural address. For me, that phrase is the excerpt of the song President Obama chose as one of the vehicles to carry his message. Titled "Pick Yourself Up," it was popular during one of the worst years of the Great Depression. Liza first brought it to my attention, many years ago, following in her mom's footsteps.
Nothing's impossible I have found,
For when my chin is on the ground,
I pick myself up,
Dust myself off,
Start all over again.
Don't lose your confidence if you slip,
Be grateful for a pleasant trip,
And pick yourself up,
Dust yourself off,
Start all over again.
Work like a soul inspired,
Till the battle of the day is won.
You may be sick and tired,
But you'll be a man, my son!
Will you remember the famous men,
Who had to fall to rise again?
So take a deep breath,
Pick yourself up,
Dust yourself off,
Start all over again.
Monday, January 19, 2009
Accidents will happen
Laughter may be the best medicine, but The Little Rascals can be life-threatening. I could handle only three of Hal Roach's shorts from 1929 before I felt the stitches in my neck loosening every time I laughed.
So to avoid a visit to the ER, I turned off the DVD player and turned in at around 8 o'clock Sunday night.
I had big plans for Monday morning. Dr. Birusingh said I could come by his office and pick up a letter authorizing me to return to work on Tuesday, if that was what I really wanted to do. I said that I did.
During the night, I got my first indication that recovery from surgery would be more complicated than I expect, or want.
My eyes popped open and I realized that my sheets were damp. I bolted upright and clawed at the bedding, almost expecting to discover a horse's head like the one that the goombas left for John Marley's character in "The Godfather." No, it was only fluid; the tube had become dislodged from the bag of my catheter and my bed, jammies and socks were soaked in pee.
There was no button to push to call a nurse in to mop up my mess and change my sheets so I managed as best as I could and went back to sleep.
Daylight came and I continued with my plan to breeze by Dr. Birusingh's office to pick up my release-to-work form. A friend said he would pick me up.
When I rose from the bed, I almost immediately fell down, a pain in my right foot preventing me to stay balanced. Somehow I managed to make it to the bathroom and climb into the shower. I must have stayed in the shower stall an hour, too fatigued to turn off the water and dry myself.
I felt very grateful that I didn't have to go to work. I barely had enough energy to pull up my socks.
My friend arrived and we headed to Dr. Birusingh's office in the 4900 Sunset Building, across the street from the hospital.
My friend sat me down in the waiting room with the morning papers and he handled checking in for the appointment and being my voice. In between glimpses at the funny pages, I jotted down comments to show to Dr. Birusingh:
"I'm feeling weaker than expected."
"Am I eating enough?"
"Maybe I can go to work by Friday?"
"So what's the next step with urology again?"
"Should I stay off my foot?"
"Am I going to get hooked on codeine, or should I switch to Tylenol?"
Dr. Birusingh was typically understanding and patient as I held up my notepad, peppering him with question after question. And Dr. B went above and beyond my expectations for today's visit, by showing me the final pathology report from Wednesday's biopsy, even drawing a sketch of my head that illustrated the region of my tongue where he snipped samples of tissue.
The bottom line seems to be that my cancer will respond to radiation, if that is what the Kaiser Tumor Board recommends. I made a note in my head to stop freaking out about the possibility that my tongue will be removed. (What do oncologists do with extracted tongues, anyhow? Resell them to Gene Simmons for KISS performances?)
We covered a great deal of ground in today's visit. Before wrapping up, Dr. Birusingh gave me a letter saying that I am unable to work until a week from today. Not only will that letter please my friends and family members who have been telling me to not push the recovery process, I have a feeling it will also make my co-workers happy.
We dropped the letter off at the post office, precluding the chance that I will reconsider this decision and go back to work before I'm ready. I probably will have the Foley catheter removed by the time I show my face at work, which will thrill our facilities crew.
The carpet in our office was just deep-cleaned over the holiday. The last thing I want to do is have an accident with my catheter while sitting at my desk.
So to avoid a visit to the ER, I turned off the DVD player and turned in at around 8 o'clock Sunday night.
I had big plans for Monday morning. Dr. Birusingh said I could come by his office and pick up a letter authorizing me to return to work on Tuesday, if that was what I really wanted to do. I said that I did.
During the night, I got my first indication that recovery from surgery would be more complicated than I expect, or want.
My eyes popped open and I realized that my sheets were damp. I bolted upright and clawed at the bedding, almost expecting to discover a horse's head like the one that the goombas left for John Marley's character in "The Godfather." No, it was only fluid; the tube had become dislodged from the bag of my catheter and my bed, jammies and socks were soaked in pee.
There was no button to push to call a nurse in to mop up my mess and change my sheets so I managed as best as I could and went back to sleep.
Daylight came and I continued with my plan to breeze by Dr. Birusingh's office to pick up my release-to-work form. A friend said he would pick me up.
When I rose from the bed, I almost immediately fell down, a pain in my right foot preventing me to stay balanced. Somehow I managed to make it to the bathroom and climb into the shower. I must have stayed in the shower stall an hour, too fatigued to turn off the water and dry myself.
I felt very grateful that I didn't have to go to work. I barely had enough energy to pull up my socks.
My friend arrived and we headed to Dr. Birusingh's office in the 4900 Sunset Building, across the street from the hospital.
My friend sat me down in the waiting room with the morning papers and he handled checking in for the appointment and being my voice. In between glimpses at the funny pages, I jotted down comments to show to Dr. Birusingh:
"I'm feeling weaker than expected."
"Am I eating enough?"
"Maybe I can go to work by Friday?"
"So what's the next step with urology again?"
"Should I stay off my foot?"
"Am I going to get hooked on codeine, or should I switch to Tylenol?"
Dr. Birusingh was typically understanding and patient as I held up my notepad, peppering him with question after question. And Dr. B went above and beyond my expectations for today's visit, by showing me the final pathology report from Wednesday's biopsy, even drawing a sketch of my head that illustrated the region of my tongue where he snipped samples of tissue.
The bottom line seems to be that my cancer will respond to radiation, if that is what the Kaiser Tumor Board recommends. I made a note in my head to stop freaking out about the possibility that my tongue will be removed. (What do oncologists do with extracted tongues, anyhow? Resell them to Gene Simmons for KISS performances?)
We covered a great deal of ground in today's visit. Before wrapping up, Dr. Birusingh gave me a letter saying that I am unable to work until a week from today. Not only will that letter please my friends and family members who have been telling me to not push the recovery process, I have a feeling it will also make my co-workers happy.
We dropped the letter off at the post office, precluding the chance that I will reconsider this decision and go back to work before I'm ready. I probably will have the Foley catheter removed by the time I show my face at work, which will thrill our facilities crew.
The carpet in our office was just deep-cleaned over the holiday. The last thing I want to do is have an accident with my catheter while sitting at my desk.
Sunday, January 18, 2009
The fight begins
As I laid in the recovery room at Kaiser following surgery on Wednesday, a nurse asked me if anyone ever told me that I was a dead ringer for that funny actor whose name she couldn't remember.
Here we go again, I moaned to myself. Unable to respond orally, I felt for my pen and notepad and scrawled, "Ben Stiller, maybe?"
"YES!" she shrieked.
Throughout the night and into the morning, it was The Ben Stiller Show in the Kaiser Sunset recovery room as nurses and other hospital staff fluttered around my bed and weighed the possibility that their new patient was the guy from "There's Something About Mary," "Tropic Thunder" and "Zoolander."
So if the tabloids this week feature reports that Ben Stiller just learned that he has cancer, well, I'll know how that rumor started.
I arrived at Kaiser Sunset early last Wednesday morning not knowing what was causing my tongue to swell, making it impossible to eat through the mouth or speak. Two days later, after having tissue removed from my tongue for a biopsy and getting a tracheotomy to facilitate breathing, my surgeon stood by my bed and told me that I have squamous cell carcinoma, a variety of cancer affecting the head and neck region.
I wasn't banking on cancer, frankly.
The timing was too suspicious. In May, I had oral surgery to remove all of my teeth. In June, I got fitted for dentures, and in July, after multiple attempts to achieve the right fit, I took possession of full upper and lower plates. Throughout the summer, I experienced increasing difficulty swallowing and speaking. By late fall, I was having trouble eating and drinking anything at all, and my speech was nearly unintelligible.
Naturally, I blamed the dentures, and sought a solution to my problem from my dentists and, later, my medical providers at Kaiser: my HIV doctor, the neurology staff, the head and neck surgery department.
That cancer was marching stealthily through my body throughout this time, and probably earlier, just was not considered. And when Dr. Birusingh, my head-and-neck surgeon, said he wanted to perform a biopsy on my tongue tissue to determine the cause of the swelling, I was convinced that the biopsy was going to show that a simply treated infection would be unmasked as the cause, not cancer.
Everything is moving quickly now.
My ensemble of artificial tube implants is expanding. On Wednesday, I got a plastic tube in my throat that allows me to breathe; last month, I got a G-tube that allows me to get nutrition and medication directly into my stomach. And in the middle of the night on Friday, I got a Foley cathether implanted into my urethra after it became impossible for me to empty my bladder, likely a consequence of being anesthesized for the biopsy.
We've got a heckuva fight ahead of us, my tubes and I.
The next step is to define a treatment strategy. A week from tomorrow, a board of clinicians at Kaiser will review my case and make a recommendation to fight the cancer with radiation, chemotherapy or by removing my tongue altogether.
I hope that last step won't be the board's recommendation, but I have to steel myself for that possibility.
If radiation or chemotherapy are recommended, Dr. Birusingh says that I'm looking at a treatment course lasting from four to six weeks. Of the two options, radiation seems the easiest and least complicated option; chemo would require longer treatments and possibly debilitating side effects.
I'm fortunate that the cancer appears to be localized, according to Dr. Birusingh.
I have a great deal to learn about cancer. To that end, Kaiser has already mailed a fat packet of information about its cancer programs and resources. Several friends have stepped forward to offer their personal experiences and those of their loved ones. And Dr. Birusingh continues to be patient and understanding by responding to my questions and serving as a resource for my friends and family members.
I'm well equipped to beat this thing, and my promise to myself is to make that happen. I may be naive about what I am up against, but my intent is to fight cancer with all I've got over the next several months or however long it takes.
Mr. Stiller, you're gonna be proud of me.
Here we go again, I moaned to myself. Unable to respond orally, I felt for my pen and notepad and scrawled, "Ben Stiller, maybe?"
"YES!" she shrieked.
Throughout the night and into the morning, it was The Ben Stiller Show in the Kaiser Sunset recovery room as nurses and other hospital staff fluttered around my bed and weighed the possibility that their new patient was the guy from "There's Something About Mary," "Tropic Thunder" and "Zoolander."
So if the tabloids this week feature reports that Ben Stiller just learned that he has cancer, well, I'll know how that rumor started.
I arrived at Kaiser Sunset early last Wednesday morning not knowing what was causing my tongue to swell, making it impossible to eat through the mouth or speak. Two days later, after having tissue removed from my tongue for a biopsy and getting a tracheotomy to facilitate breathing, my surgeon stood by my bed and told me that I have squamous cell carcinoma, a variety of cancer affecting the head and neck region.
I wasn't banking on cancer, frankly.
The timing was too suspicious. In May, I had oral surgery to remove all of my teeth. In June, I got fitted for dentures, and in July, after multiple attempts to achieve the right fit, I took possession of full upper and lower plates. Throughout the summer, I experienced increasing difficulty swallowing and speaking. By late fall, I was having trouble eating and drinking anything at all, and my speech was nearly unintelligible.
Naturally, I blamed the dentures, and sought a solution to my problem from my dentists and, later, my medical providers at Kaiser: my HIV doctor, the neurology staff, the head and neck surgery department.
That cancer was marching stealthily through my body throughout this time, and probably earlier, just was not considered. And when Dr. Birusingh, my head-and-neck surgeon, said he wanted to perform a biopsy on my tongue tissue to determine the cause of the swelling, I was convinced that the biopsy was going to show that a simply treated infection would be unmasked as the cause, not cancer.
Everything is moving quickly now.
My ensemble of artificial tube implants is expanding. On Wednesday, I got a plastic tube in my throat that allows me to breathe; last month, I got a G-tube that allows me to get nutrition and medication directly into my stomach. And in the middle of the night on Friday, I got a Foley cathether implanted into my urethra after it became impossible for me to empty my bladder, likely a consequence of being anesthesized for the biopsy.
We've got a heckuva fight ahead of us, my tubes and I.
The next step is to define a treatment strategy. A week from tomorrow, a board of clinicians at Kaiser will review my case and make a recommendation to fight the cancer with radiation, chemotherapy or by removing my tongue altogether.
I hope that last step won't be the board's recommendation, but I have to steel myself for that possibility.
If radiation or chemotherapy are recommended, Dr. Birusingh says that I'm looking at a treatment course lasting from four to six weeks. Of the two options, radiation seems the easiest and least complicated option; chemo would require longer treatments and possibly debilitating side effects.
I'm fortunate that the cancer appears to be localized, according to Dr. Birusingh.
I have a great deal to learn about cancer. To that end, Kaiser has already mailed a fat packet of information about its cancer programs and resources. Several friends have stepped forward to offer their personal experiences and those of their loved ones. And Dr. Birusingh continues to be patient and understanding by responding to my questions and serving as a resource for my friends and family members.
I'm well equipped to beat this thing, and my promise to myself is to make that happen. I may be naive about what I am up against, but my intent is to fight cancer with all I've got over the next several months or however long it takes.
Mr. Stiller, you're gonna be proud of me.
Monday, January 12, 2009
Big leap forward
Wasn't that long ago I was lamenting at the glacial pace of my providers in getting to the bottom of my medical problems.
Now, I can barely keep up with the new developments in my Curious Case, which give Benjamin Button's a run for the money.
Last week ended with a volley of e-mails between me and Dr. Birusingh, the head and neck surgeon at Kaiser, and getting an appointment to see Dr. Birusingh first thing Monday morning to discuss having a biopsy early this week.
In today's visit, Dr. Birusingh examined my tongue and mouth and throat again, and showed me images from the Jan. 2 MRI as well as last week's CT scan.
The images clearly showed why it's important to move quickly on my case. They depicted how my enlarged tongue is restricting my airway. I don't currently have trouble breathing but a close look at the scans of my throat were enough to take my breath away.
On Wednesday morning, I will have a biopsy, as I expected. But preceding that procedure, Dr. Birusingh will do a tracheotomy. His concern is that the biopsy will cause my tongue to swell even further, and close up my airway.
The tracheotomy means that I will be adding yet another tube to my growing ensemble, but it will also provide a means for me to breathe.
I'll be hospitalized three days, Dr. Birusingh said. After the surgery I will be moved to ICU, and then to a regular hospital room.
Much of today was spent taking care of pre-op procedures: having an EKG, getting my jaw X-rayed, having blood drawn, meeting with the anesthesiologist, signing papers and taking care of the other steps associated with a hospital stay.
The day or so between now and when I go to the hospital will be consumed with wrapping up some projects at the office and trying to avoid worrying about what lies ahead.
Dr. Birusingh told me to expect to wait five to 14 days before I learn about the outcome of the biopsy. I'm not going to dwell on the range of outcomes; I'll just roll with those punches wherever they land.
It won't be possible for me to sustain this blog while I am in the hospital, so this may be my last post till the weekend. I hope that I'll have good news to relate when I resume posting.
Now, I can barely keep up with the new developments in my Curious Case, which give Benjamin Button's a run for the money.
Last week ended with a volley of e-mails between me and Dr. Birusingh, the head and neck surgeon at Kaiser, and getting an appointment to see Dr. Birusingh first thing Monday morning to discuss having a biopsy early this week.
In today's visit, Dr. Birusingh examined my tongue and mouth and throat again, and showed me images from the Jan. 2 MRI as well as last week's CT scan.
The images clearly showed why it's important to move quickly on my case. They depicted how my enlarged tongue is restricting my airway. I don't currently have trouble breathing but a close look at the scans of my throat were enough to take my breath away.
On Wednesday morning, I will have a biopsy, as I expected. But preceding that procedure, Dr. Birusingh will do a tracheotomy. His concern is that the biopsy will cause my tongue to swell even further, and close up my airway.
The tracheotomy means that I will be adding yet another tube to my growing ensemble, but it will also provide a means for me to breathe.
I'll be hospitalized three days, Dr. Birusingh said. After the surgery I will be moved to ICU, and then to a regular hospital room.
Much of today was spent taking care of pre-op procedures: having an EKG, getting my jaw X-rayed, having blood drawn, meeting with the anesthesiologist, signing papers and taking care of the other steps associated with a hospital stay.
The day or so between now and when I go to the hospital will be consumed with wrapping up some projects at the office and trying to avoid worrying about what lies ahead.
Dr. Birusingh told me to expect to wait five to 14 days before I learn about the outcome of the biopsy. I'm not going to dwell on the range of outcomes; I'll just roll with those punches wherever they land.
It won't be possible for me to sustain this blog while I am in the hospital, so this may be my last post till the weekend. I hope that I'll have good news to relate when I resume posting.
Sunday, January 11, 2009
POP! goes the G-tube
Paula Poundstone tells a story about discovering that one of her daughters has dropped a Flintstones jelly-jar glass, shattering it across the kitchen floor.
"Oh, so we can't have nice things," she complains to the child.
That's how I feel about my 26-year old sofa these days, a little more than one month of G-tube feedings in my living room.
My G-tube error rate is embarrassingly high, and I have the stains on my sofa, carpet and pajamas to prove it.
Before I can pour a meal in the G-tube, I need to clear the tube of residual goop from my last meal by attaching a syringe to the tube, and then raising a plunger inside the syringe. Once the stinky goop is captured in the syringe I dump it in an empty Dixie cup.
But the plunger rarely lifts easily so I have to pull on it as hard as I can. Too often the plunger separates from the syringe with a ear-splitting "POP!" and goop flies everywhere but in the Dixie cup.
At other times, I'll fill the syringe with fresh vanilla Isosource and then wait for it to work its way down the G-tube. A believer in multi-tasking, I use this time to read the paper. Every so often, the nose of the syringe slips out of the G-tube and the Isosource falls onto my lap, the sofa and that morning's Sudoku.
Or maybe an accident occurs between meals, when the cap of the G-tube pops open and goop flows down my leg or in my bed.
Any one of these G-tube bloopers would be an instant hit on You Tube but I really would like to keep them just between you and me.
When I feed at work, I slip into a vacant office and close the door. My co-workers think I'm being modest about unbuttoning my shirt in front of them but I really don't want them to know what a klutz I am.
You would think that I would be getting more adept at using the G-tube after all this time, but I'm not. That makes me all the more hopeful that this is only a temporary stage in my life, and I'll be returning to eating meals through my mouth soon.
"Oh, so we can't have nice things," she complains to the child.
That's how I feel about my 26-year old sofa these days, a little more than one month of G-tube feedings in my living room.
My G-tube error rate is embarrassingly high, and I have the stains on my sofa, carpet and pajamas to prove it.
Before I can pour a meal in the G-tube, I need to clear the tube of residual goop from my last meal by attaching a syringe to the tube, and then raising a plunger inside the syringe. Once the stinky goop is captured in the syringe I dump it in an empty Dixie cup.
But the plunger rarely lifts easily so I have to pull on it as hard as I can. Too often the plunger separates from the syringe with a ear-splitting "POP!" and goop flies everywhere but in the Dixie cup.
At other times, I'll fill the syringe with fresh vanilla Isosource and then wait for it to work its way down the G-tube. A believer in multi-tasking, I use this time to read the paper. Every so often, the nose of the syringe slips out of the G-tube and the Isosource falls onto my lap, the sofa and that morning's Sudoku.
Or maybe an accident occurs between meals, when the cap of the G-tube pops open and goop flows down my leg or in my bed.
Any one of these G-tube bloopers would be an instant hit on You Tube but I really would like to keep them just between you and me.
When I feed at work, I slip into a vacant office and close the door. My co-workers think I'm being modest about unbuttoning my shirt in front of them but I really don't want them to know what a klutz I am.
You would think that I would be getting more adept at using the G-tube after all this time, but I'm not. That makes me all the more hopeful that this is only a temporary stage in my life, and I'll be returning to eating meals through my mouth soon.
Saturday, January 10, 2009
In the Moo'd
Just spent time pawing through the weekend edition of the L.A.Times for food coupons.
I read recently that the recession is luring more consumers into becoming coupon-clippers. I wonder how many in the clipping community are clipping coupons for food even though they take meals through a G-tube, like me?
Most of the coupons I clipped today for soup, cream of wheat, instant mashed potatoes and Jell-O don't expire till the end of February, and maybe my G-tube days will be behind me by then.
The last calories that passed my lips were in a Jamba Juice Peanut Butter Moo'd smoothie. I had been having difficulty swallowing for some time, but for some reason I had no problems with the Peanut Butter Moo'd, and I would bolt out of the office daily to head to the Jamba Juice in the Beverly Connection. I kept a Post-It note in my wallet that read "P.B. Moo'd" to hold up to the girl behind the cash register.
I haven't been back to Jamba Juice since the first week of December, when I got my PICC line and then my G-tube. The staff there may be wondering what happened to the mute who got the Moo'd and never dropped anything in the tip jar.
A week from today, my nephew Philip is getting married in Fort Collins, Colo. I have a reservation to fly to Denver on Thursday but it's clear that I'm in no shape to travel.
Besides missing the wedding, I'm passing up an opportunity to see family members from Tennessee, New York, Massachusetts, Arizona, Iowa and California. But they all know what's going on, and I hope that they understand why I'm sitting out the celebration.
I read recently that the recession is luring more consumers into becoming coupon-clippers. I wonder how many in the clipping community are clipping coupons for food even though they take meals through a G-tube, like me?
Most of the coupons I clipped today for soup, cream of wheat, instant mashed potatoes and Jell-O don't expire till the end of February, and maybe my G-tube days will be behind me by then.
The last calories that passed my lips were in a Jamba Juice Peanut Butter Moo'd smoothie. I had been having difficulty swallowing for some time, but for some reason I had no problems with the Peanut Butter Moo'd, and I would bolt out of the office daily to head to the Jamba Juice in the Beverly Connection. I kept a Post-It note in my wallet that read "P.B. Moo'd" to hold up to the girl behind the cash register.
I haven't been back to Jamba Juice since the first week of December, when I got my PICC line and then my G-tube. The staff there may be wondering what happened to the mute who got the Moo'd and never dropped anything in the tip jar.
A week from today, my nephew Philip is getting married in Fort Collins, Colo. I have a reservation to fly to Denver on Thursday but it's clear that I'm in no shape to travel.
Besides missing the wedding, I'm passing up an opportunity to see family members from Tennessee, New York, Massachusetts, Arizona, Iowa and California. But they all know what's going on, and I hope that they understand why I'm sitting out the celebration.
Friday, January 9, 2009
Sicko
Not even a day has passed since I went to the hospital for a CT scan, but already Dr. Birusingh, the head and neck doctor at Kaiser, has reviewed the images and recommended the next step for me to take.
The doc wants to schedule a biopsy. After an exchange of e-mails, he and I agreed that I would see him in his office on Monday morning at 9, with an eye on performing the procedure on Tuesday or Wednesday.
The timing Dr. Birusingh proposed is twisting my gut. My body is sick, right? So getting this procedure done sooner rather than later makes sense. That means having the biopsy on Tuesday.
But my brain is a little green and moldy around the edges, too.
See, I have a ticket to see a program called "Juvenile Mindrot: Inappropriate and Disturbing Kids' Cartoons" at the Silent Movie Theatre on Fairfax on Tuesday night. I can't imagine I'd be in any condition to watch banned cartoons in a room full of other sickos like me after spending time under the knife in the Kaiser operating room.
Dr. Birusingh will likely scoop or scrape tissue from my mouth and tongue during the operation. Once I emerge from the fog of anesthesia, something tells me it would be a good idea to avoid the risk of splitting my stitches with a vigorous laugh or two.
I'll decide which day to have the procedure on Monday when I see Dr. Birusingh face-to-face. Maybe he'll offer insight into what he saw in my scans from last night and that will help me decide whether I should move forward as fast as possible, or just fast.
By the way, I dropped by Kaiser early this morning to have blood drawn, pick up a few prescriptions and have the IV I got for last night's CT scan removed from my arm.
I walked up to the counter of the basement imaging center, held up a note that read "Uh, I think I was supposed to leave this behind last night," and pointed to the IV in my arm. The waiting area was full but I was allowed to leapfrog ahead of the other patients and see a nurse right away.
As soon as the nurse saw me, his face brightened. He said that he and I were in the same marathon training group several years ago. I sort of remember him from the training group, which had a hundred members or more, but he clearly remembered me.
"So are you still running marathons?" the nurse asked, as he yanked the tube out of my vein.
I bobbed my head vaguely, which counts as a fib. I haven't run a marathon since 2002, and with a G-tube swinging from my stomach and a tongue swollen to the size of Orca the Killer Whale, I don't have any marathons on the horizon. I have done some nutty endurance stunts on my bicycle, however, including three AIDS/LifeCycles, and hopefully a fourth in May.
Before I left, I scribbled a perky note to the nurse saying that it was great to see him again even though I can't quite pinpoint seeing him before at all.
When I get my voice back, and my tongue regains its agility, I'll come back to the imaging center, track him down and tell him the truth. With all of the time that I spend at Kaiser, I need to protect my reputation.
The doc wants to schedule a biopsy. After an exchange of e-mails, he and I agreed that I would see him in his office on Monday morning at 9, with an eye on performing the procedure on Tuesday or Wednesday.
The timing Dr. Birusingh proposed is twisting my gut. My body is sick, right? So getting this procedure done sooner rather than later makes sense. That means having the biopsy on Tuesday.
But my brain is a little green and moldy around the edges, too.
See, I have a ticket to see a program called "Juvenile Mindrot: Inappropriate and Disturbing Kids' Cartoons" at the Silent Movie Theatre on Fairfax on Tuesday night. I can't imagine I'd be in any condition to watch banned cartoons in a room full of other sickos like me after spending time under the knife in the Kaiser operating room.
Dr. Birusingh will likely scoop or scrape tissue from my mouth and tongue during the operation. Once I emerge from the fog of anesthesia, something tells me it would be a good idea to avoid the risk of splitting my stitches with a vigorous laugh or two.
I'll decide which day to have the procedure on Monday when I see Dr. Birusingh face-to-face. Maybe he'll offer insight into what he saw in my scans from last night and that will help me decide whether I should move forward as fast as possible, or just fast.
By the way, I dropped by Kaiser early this morning to have blood drawn, pick up a few prescriptions and have the IV I got for last night's CT scan removed from my arm.
I walked up to the counter of the basement imaging center, held up a note that read "Uh, I think I was supposed to leave this behind last night," and pointed to the IV in my arm. The waiting area was full but I was allowed to leapfrog ahead of the other patients and see a nurse right away.
As soon as the nurse saw me, his face brightened. He said that he and I were in the same marathon training group several years ago. I sort of remember him from the training group, which had a hundred members or more, but he clearly remembered me.
"So are you still running marathons?" the nurse asked, as he yanked the tube out of my vein.
I bobbed my head vaguely, which counts as a fib. I haven't run a marathon since 2002, and with a G-tube swinging from my stomach and a tongue swollen to the size of Orca the Killer Whale, I don't have any marathons on the horizon. I have done some nutty endurance stunts on my bicycle, however, including three AIDS/LifeCycles, and hopefully a fourth in May.
Before I left, I scribbled a perky note to the nurse saying that it was great to see him again even though I can't quite pinpoint seeing him before at all.
When I get my voice back, and my tongue regains its agility, I'll come back to the imaging center, track him down and tell him the truth. With all of the time that I spend at Kaiser, I need to protect my reputation.
Thursday, January 8, 2009
Rattled
I was slouching on my sofa, raising a can of vanilla Isosource with one hand and holding my G-tube and syringe with the other, listening to Jimi's "Manic Depression" on KLOS-FM, when the walls of my apartment and the floor began to shake.
I thought, "Is this how it's all going to end for me? Sitting on my butt, tongue swollen beyond the capacity of my mouth, clutching a rubber tube connected to my stomach as the ceiling crashes down upon my head, with Hendrix fighting to be heard above the sound of breaking concrete?"
Well, that was 30 minutes ago or so.
I managed to not spill a single drop of Isosource during the quake, but I did briefly wonder if tonight's feeding was going to be my last meal. Luckily, I was able to fight off that bleak premonition. "Manic Depression" was followed by "New Kid in Town" and I put the quake out of mind, instead cursing Uncle Joe Benson for playing the Eagles at a moment when I had no hands free to use to turn the dial of my radio.
Supper's over now, and I can process the events of the day, which turned out to be another day of progress.
I asked a friend to call Kaiser to schedule a CT scan for me, and he was able to get me in at 5:30 tonight! Before reporting to the basement at Kaiser for that procedure, I stopped by the Head and Neck Clinic across the street and was able to see Dr. Birusingh face-to-face. He said he was delighted that I was able to get the CT scan so quickly, and he promised to phone me Friday morning to discuss the next steps with me. It's likely that I will be having a biopsy.
The CT scan was not uncomfortable. It was similar to the MRI but the CT machine was more like a donut than a cylinder used for the MRI, and it didn't emit weird, loud noises. At the beginning of the procedure, the nurse started an IV on my right arm, and toward the end, I was injected with contrast.
Before I left, I scribbled a note to the CT technician. Tomorrow morning, I have to have my HIV labs drawn for an appointment with Dr. Towner a week from today, and I wanted to be sure that the contrast would not interfere with getting a reading from my blood sample tomorrow. She assured me that it would not be a problem.
What is a problem, however, is that I left Kaiser without having my IV removed. I think that they simply forgot to remove it, but maybe it was my responsibility to tell someone that it was still in my arm.
Well, I'll see if they can use it for tomorrow's blood draw, and then remove it. The last thing I need is more plastic tubing sticking out of my body.
As I write this, Jim Ladd on KLOS-FM has been spinning tunes like "Shake It Up," "Shakin' All Over" and "Whole Lot of Shakin' Goin' On" but now he has segued into a series of Elvis recordings in observance of the King's birthday. Most people in Southern California have probably already forgotten that they thought they were going to be buried in rubble tonight. And I'm looking to the day when I can forget about my medical problems of the past several months.
I thought, "Is this how it's all going to end for me? Sitting on my butt, tongue swollen beyond the capacity of my mouth, clutching a rubber tube connected to my stomach as the ceiling crashes down upon my head, with Hendrix fighting to be heard above the sound of breaking concrete?"
Well, that was 30 minutes ago or so.
I managed to not spill a single drop of Isosource during the quake, but I did briefly wonder if tonight's feeding was going to be my last meal. Luckily, I was able to fight off that bleak premonition. "Manic Depression" was followed by "New Kid in Town" and I put the quake out of mind, instead cursing Uncle Joe Benson for playing the Eagles at a moment when I had no hands free to use to turn the dial of my radio.
Supper's over now, and I can process the events of the day, which turned out to be another day of progress.
I asked a friend to call Kaiser to schedule a CT scan for me, and he was able to get me in at 5:30 tonight! Before reporting to the basement at Kaiser for that procedure, I stopped by the Head and Neck Clinic across the street and was able to see Dr. Birusingh face-to-face. He said he was delighted that I was able to get the CT scan so quickly, and he promised to phone me Friday morning to discuss the next steps with me. It's likely that I will be having a biopsy.
The CT scan was not uncomfortable. It was similar to the MRI but the CT machine was more like a donut than a cylinder used for the MRI, and it didn't emit weird, loud noises. At the beginning of the procedure, the nurse started an IV on my right arm, and toward the end, I was injected with contrast.
Before I left, I scribbled a note to the CT technician. Tomorrow morning, I have to have my HIV labs drawn for an appointment with Dr. Towner a week from today, and I wanted to be sure that the contrast would not interfere with getting a reading from my blood sample tomorrow. She assured me that it would not be a problem.
What is a problem, however, is that I left Kaiser without having my IV removed. I think that they simply forgot to remove it, but maybe it was my responsibility to tell someone that it was still in my arm.
Well, I'll see if they can use it for tomorrow's blood draw, and then remove it. The last thing I need is more plastic tubing sticking out of my body.
As I write this, Jim Ladd on KLOS-FM has been spinning tunes like "Shake It Up," "Shakin' All Over" and "Whole Lot of Shakin' Goin' On" but now he has segued into a series of Elvis recordings in observance of the King's birthday. Most people in Southern California have probably already forgotten that they thought they were going to be buried in rubble tonight. And I'm looking to the day when I can forget about my medical problems of the past several months.
Wednesday, January 7, 2009
What's new, pussyCT?
Caught flatfooted today by an e-mail I received from Dr. Birusingh, the head and neck surgeon at Kaiser.
I had forecast that no news about my condition would emerge this week, since my MRI was just five days ago and I was told to expect to wait a week for results. I checked in with the doc by e-mail yesterday, and just 30 minutes ago, I saw his response in the Kaiser message center.
Dr. Birusingh says that the review of my MRI scan shows swelling of the tongue and upper neck, and he recommends a CT scan of the neck "to more fully evaluate that area."
He continues: "Based on the CT scan, it may be necessary to have a surgical procedure to take a biopsy of that area."
"Biopsy" is a scary word. But it's not the first scary term I've encountered in my quest to get to the bottom of what's wrong with me. I'm not going to get all bent out of shape about it; instead, I'm happy that the MRI didn't come back normal, like the test last month.
Right after e-mailing Dr. Birusingh to say I want to have my neck looked at as soon as possible, I headed over to Wikipedia to learn about CT scans. (In yesterday's Family Circus, Dolly called the procedure a "CAT scan" but I'm not about to mimick the medical vocabulary of fictitious four-year-old.)
"CT" stands for "Computed tomography." The original name was "the EMI scan," because it was developed at a research arm of that British music company.
So the fortune that EMI made off of the Beatles in the 1960s may have bankrolled the research that led to developing the EMI scan in the early '70s. Who knew that when I plunked down my allowance for the "I Want to Hold Your Hand/I Saw Her Standing There" 45 in 1964 that I was making an investment that would reap dividends for me 45 years later?
As far as I can see, the CT scan doesn't look as intimidating as an MRI. Heck, if "CAT scans" are referenced in Family Circus, how uncomfortable can they be?
So ground is being gained on my case. Goo goo gajoob!
I had forecast that no news about my condition would emerge this week, since my MRI was just five days ago and I was told to expect to wait a week for results. I checked in with the doc by e-mail yesterday, and just 30 minutes ago, I saw his response in the Kaiser message center.
Dr. Birusingh says that the review of my MRI scan shows swelling of the tongue and upper neck, and he recommends a CT scan of the neck "to more fully evaluate that area."
He continues: "Based on the CT scan, it may be necessary to have a surgical procedure to take a biopsy of that area."
"Biopsy" is a scary word. But it's not the first scary term I've encountered in my quest to get to the bottom of what's wrong with me. I'm not going to get all bent out of shape about it; instead, I'm happy that the MRI didn't come back normal, like the test last month.
Right after e-mailing Dr. Birusingh to say I want to have my neck looked at as soon as possible, I headed over to Wikipedia to learn about CT scans. (In yesterday's Family Circus, Dolly called the procedure a "CAT scan" but I'm not about to mimick the medical vocabulary of fictitious four-year-old.)
"CT" stands for "Computed tomography." The original name was "the EMI scan," because it was developed at a research arm of that British music company.
So the fortune that EMI made off of the Beatles in the 1960s may have bankrolled the research that led to developing the EMI scan in the early '70s. Who knew that when I plunked down my allowance for the "I Want to Hold Your Hand/I Saw Her Standing There" 45 in 1964 that I was making an investment that would reap dividends for me 45 years later?
As far as I can see, the CT scan doesn't look as intimidating as an MRI. Heck, if "CAT scans" are referenced in Family Circus, how uncomfortable can they be?
So ground is being gained on my case. Goo goo gajoob!
Tuesday, January 6, 2009
Holding pattern
Any breakthrough in resolving my medical problems is unlikely this week.
No encounters with the Kaiser doctors who have treated me so far are scheduled; my next medical appointment is not until a week from Thursday, and that is a routine visit with Dr. Towner, my HIV doctor. This Thursday, I'll get blood drawn so I'll have fresh HIV numbers for that appointment.
There is a remote chance that last week's MRI results will be known by the end of this week, but I'm not banking on that.
While at Kaiser getting my blood drawn, I'll stop at the pharmacy and pick up refills on my three HIV prescriptions that are not available in liquid formulations.
I miss the simplicity of my old HIV regimens, all of which simply required me to pop some pills. Among those regimens, Crixivan, an early protease inhibitor, was the most complicated medicine I ever had to take. I had to take doses of Crixivan exactly eight hours apart, and always on an empty stomach.
I guess I'll know next week if I'm administering my meds properly through the G-tube. I have a tiny syringe for liquid Norvir, a large syringe for liquid Epivir, and an even larger syringe for Truvada, Ziagen and Prezista, the three tablets that I grind into powder and then tap slowly into a syringe filled with water. There are many opportunities for things to go awry, and if precision matters, I may be missing the mark.
With luck, in time I will have only a scar above my belly button to remind me that I ever had a G-tube, and I'll be able to resume swallowing my meds. Everyone tells me that they see that outcome for me. I'd like to believe that they're right.
No encounters with the Kaiser doctors who have treated me so far are scheduled; my next medical appointment is not until a week from Thursday, and that is a routine visit with Dr. Towner, my HIV doctor. This Thursday, I'll get blood drawn so I'll have fresh HIV numbers for that appointment.
There is a remote chance that last week's MRI results will be known by the end of this week, but I'm not banking on that.
While at Kaiser getting my blood drawn, I'll stop at the pharmacy and pick up refills on my three HIV prescriptions that are not available in liquid formulations.
I miss the simplicity of my old HIV regimens, all of which simply required me to pop some pills. Among those regimens, Crixivan, an early protease inhibitor, was the most complicated medicine I ever had to take. I had to take doses of Crixivan exactly eight hours apart, and always on an empty stomach.
I guess I'll know next week if I'm administering my meds properly through the G-tube. I have a tiny syringe for liquid Norvir, a large syringe for liquid Epivir, and an even larger syringe for Truvada, Ziagen and Prezista, the three tablets that I grind into powder and then tap slowly into a syringe filled with water. There are many opportunities for things to go awry, and if precision matters, I may be missing the mark.
With luck, in time I will have only a scar above my belly button to remind me that I ever had a G-tube, and I'll be able to resume swallowing my meds. Everyone tells me that they see that outcome for me. I'd like to believe that they're right.
Sunday, January 4, 2009
Hello, Black Monday
For the first time in memory, I'll be sitting out Black Monday.
Black Monday is the name that I give to the first Monday following New Year's Day. It's the day when people who make a New Year's resolution to lose weight hit the gym to launch or restart an exercise routine. Their presence makes gyms more crowded, meaning that it takes longer for everyone to complete their workout.
Health clubs are feeling the brunt of the financial meltdown, so the invasion of the newly resolute may not be as severe tomorrow as it has been in the past. I won't be there to find out. I'll be asleep when the gym opens, instead of on my way there for a workout before heading to my job.
I haven't shown my face at the gym for one month and two days. On Dec. 3 I got a PICC line in my right arm for intravenous feedings, and two days later I got a G-tube for feedings directly into my stomach. Going to the gym hasn't been a priority, and I haven't gone running or ridden my bike since then, either.
I haven't been able to put weight back on with the formula that I pour into my G-tube; all I've been able to do is stop losing additional weight. I need those calories to get through a sedentary day, I don't want to burn them at a quicker rate by resuming my exercise routine.
And I also feel a little uncomfortable doing cardio with a foot-long rubber tube hanging from above my belly button. I could trip on it; it could get snared into the treadmill; it might get caught on something and rip my tummy right out of my torso.
So this is a good time to take a sabbatical from working out. And I can use the hours that have opened up in my day for other pursuits.
My brain is reaping the dividends of this sudden lifestyle change. Yesterday a friend who knows that I am sick dropped off a stack of DVDs. So instead of burning calories at the gym on Black Monday I can get up early and give my brain a workout by watching "You Don't Mess with the Zohan" or "Sex and the City."
I don't want to get too comfortable being a couch potato, though. AIDS/LifeCycle 8 is less than five months away. While I don't know when I will be able to resume training, I don't want to backpedal on my commitment to ride and raise $5,000.
Black Monday is the name that I give to the first Monday following New Year's Day. It's the day when people who make a New Year's resolution to lose weight hit the gym to launch or restart an exercise routine. Their presence makes gyms more crowded, meaning that it takes longer for everyone to complete their workout.
Health clubs are feeling the brunt of the financial meltdown, so the invasion of the newly resolute may not be as severe tomorrow as it has been in the past. I won't be there to find out. I'll be asleep when the gym opens, instead of on my way there for a workout before heading to my job.
I haven't shown my face at the gym for one month and two days. On Dec. 3 I got a PICC line in my right arm for intravenous feedings, and two days later I got a G-tube for feedings directly into my stomach. Going to the gym hasn't been a priority, and I haven't gone running or ridden my bike since then, either.
I haven't been able to put weight back on with the formula that I pour into my G-tube; all I've been able to do is stop losing additional weight. I need those calories to get through a sedentary day, I don't want to burn them at a quicker rate by resuming my exercise routine.
And I also feel a little uncomfortable doing cardio with a foot-long rubber tube hanging from above my belly button. I could trip on it; it could get snared into the treadmill; it might get caught on something and rip my tummy right out of my torso.
So this is a good time to take a sabbatical from working out. And I can use the hours that have opened up in my day for other pursuits.
My brain is reaping the dividends of this sudden lifestyle change. Yesterday a friend who knows that I am sick dropped off a stack of DVDs. So instead of burning calories at the gym on Black Monday I can get up early and give my brain a workout by watching "You Don't Mess with the Zohan" or "Sex and the City."
I don't want to get too comfortable being a couch potato, though. AIDS/LifeCycle 8 is less than five months away. While I don't know when I will be able to resume training, I don't want to backpedal on my commitment to ride and raise $5,000.
Friday, January 2, 2009
Another MRI
I've tried three times to struggle through the Wikipedia entry for Magnetic Resonance Imaging (MRI) and each time I want to run away screaming.
The first sentence, which explains that an MRI "is primarily a medical imaging technique most commonly used in radiology to visualize the structure and function of the body" is straighforward enough, and gives me courage to move on. The second sentence, which declares that an MRI "provides detailed images of the body in any plane" is also within grasp of my intellect. But I start to get wobbly when I try to follow the third sentence, and by the middle of the fourth sentence I get completely wigged out and I check the URL to make sure I haven't landed on Wackypedia by mistake.
Luckily you don't have to understand the MRI process in order to experience it. I had my second MRI in a few weeks early this morning. I trust that the radiologists at Kaiser understand what MRIs are all about and got satisfactory images of my head during the hour I laid flat on my back inside a cylinder about two feet in diameter.
This MRI was different in several ways from the first one that was performed last month. For one, it was in a different location: the basement of the main hospital at Kaiser Sunset, rather than a stand-alone building further north on Edgemont Street. With a duration of more than one hour, it was also longer than the previous procedure. Finally I was partially restrained from movement by a device that was placed on my head, and the technician kind of tucked me in before I slid inside the cylinder, which was a nice touch. I haven't been tucked in for a good 40 years.
I'm sure that the MRI technology is very state-of-the-art but to me the MRI machine looks like something out of Woody Allen's "Sleeper." I try to not look at it, frankly. As soon as I feel the bed moving into the enclosed area, I close my eyes and keep them shut until the procedure is over and I slide out.
It's the noises during the procedure that really strike me as bizarre. You could almost dance to an MRI, if you didn't know that dancing during an MRI would screw up the whole thing.
So I'll save my urge to dance for the day I get the results from today's procedure. With luck, today's MRI detected something going on in my head that will lead to an effective treatment. I'll know in about a week.
The first sentence, which explains that an MRI "is primarily a medical imaging technique most commonly used in radiology to visualize the structure and function of the body" is straighforward enough, and gives me courage to move on. The second sentence, which declares that an MRI "provides detailed images of the body in any plane" is also within grasp of my intellect. But I start to get wobbly when I try to follow the third sentence, and by the middle of the fourth sentence I get completely wigged out and I check the URL to make sure I haven't landed on Wackypedia by mistake.
Luckily you don't have to understand the MRI process in order to experience it. I had my second MRI in a few weeks early this morning. I trust that the radiologists at Kaiser understand what MRIs are all about and got satisfactory images of my head during the hour I laid flat on my back inside a cylinder about two feet in diameter.
This MRI was different in several ways from the first one that was performed last month. For one, it was in a different location: the basement of the main hospital at Kaiser Sunset, rather than a stand-alone building further north on Edgemont Street. With a duration of more than one hour, it was also longer than the previous procedure. Finally I was partially restrained from movement by a device that was placed on my head, and the technician kind of tucked me in before I slid inside the cylinder, which was a nice touch. I haven't been tucked in for a good 40 years.
I'm sure that the MRI technology is very state-of-the-art but to me the MRI machine looks like something out of Woody Allen's "Sleeper." I try to not look at it, frankly. As soon as I feel the bed moving into the enclosed area, I close my eyes and keep them shut until the procedure is over and I slide out.
It's the noises during the procedure that really strike me as bizarre. You could almost dance to an MRI, if you didn't know that dancing during an MRI would screw up the whole thing.
So I'll save my urge to dance for the day I get the results from today's procedure. With luck, today's MRI detected something going on in my head that will lead to an effective treatment. I'll know in about a week.
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