Sunday, November 29, 2009
A friend wrote on my Facebook wall: "Just read the Stones plan to tour again next year. So now you GOTTA stick around!"
He makes a good point. The Rolling Stones have been helping me keep that hooded dude with the scythe off my back for almost two decades now.
In 1991, when I got my AIDS diagnosis, I had no expectation that I would ever see my favorite band perform live again. The Stones had just completed a massive world tour the year before, and it had been eight years before their previous jaunt around the globe. In 1991, no one with an AIDS diagnosis reasonably expected to live four or five years, let alone eight, so I figured that the band's shows at the Coliseum in the fall of 1989 would be the last Stones shows I would see.
Surprisingly, the Stones waited only three years before hitting the road again, and just as surprisingly AIDS didn't get in the way of me catching a show on the band's 1994 tour.
But as I waited to exit the Rose Bowl parking lot after that performance, I told myself "That was definitely my last chance to see the Stones. No way am I going to live long enough for another tour." (I didn't expect to live long enough to find my way out of the Rose Bowl lot that night.)
Well, soon I was taking new combination therapies to treat my HIV. Those treatments succeeded and before I knew it, it was 1997 and the Stones were hitting the road yet again. I had an unexpected opportunity to see them a few more times.
Then they toured in 1999.
And again in 2002.
In 2005, the Stones began yet another tour, and I saw them several times that year and in 2006.
By this time I had stopped associating Stones tours with my longevity with AIDS. But now I have a new grim prognosis: one that may or may not come to pass by the time the Stones begin their 2010 juggernaut.
My doctors have penciled in spring as a possible expiration date on my medical charts; Mick and the boys are probably looking at summer for the first shows of the new tour,
If past is prologue, time will remain on my side and I'll find myself in the audience at a handful of Stones shows in 2010. I may need to stay seated during the most frenzied moments of the shows, but I'll be there.
Whether my eardrums make it that far is an entirely different matter.
Friday, November 27, 2009
My calendar had a bright red circle around today's date.
Kaiser was sending a home health nurse named Mary to my apartment to assess my situation today. I wasn't given a time to expect the nurse, I was told only that Mary would call when she arrived so I could buzz her in.
I got my shower out of the way early so that I wouldn't miss Mary's call. And then I got out my cleaning supplies to get the apartment presentable.
The last thing I wanted Mary to think was that her new assignment would be nursing a pig. I swept and mopped the kitchen floor, vacuumed the living room, fluffed up the pillows on the sofa, and scrubbed the counter top, shower tiles and toilet in the bathroom.
And then I sat on the sofa with the phone in my lap and waited.
Around 4 p.m., my best buddy sent a text message asking if I wanted some company.
It seemed fairly certain that Nurse Mary had stood me up so I told him sure.
The only problem was the apartment looked suspiciously clean: cleaner than it would need to be if I knew it was only my buddy coming by to visit.
I didn't want him to think that I was throwing away money on a maid's service, so I erased the vacuum lines in the carpet, scattered some debris on the kitchen floor, and replaced the good pillows on the sofa with the ones stained with drool, and put the guest towels in the bathroom back in the closet.
While my buddy and I watched an old episode of "Bewitched" in my comfortably disheveled digs, the phone rang.
I thought it might be Nurse Mary calling to say that she would be coming by after all, so I gestured to my buddy to pick up the phone.
Turned out to be someone calling to see if I had purchased a cemetery plot for myself yet.
Judging from what my friend said to the caller, I don't expect them to call back. I felt sorry for the guy. It must get tedious making cold calls on people to pitch cemetery plots, and he will never know how close he came to a live prospect.
The "Bewitched" episode saved the day from being a total wipe-out. I don't know if Nurse Mary keeps weekend hours but I may as well get up early again tomorrow, drag out the cleaning supplies and prepare for Mary's visit.
This place is a pig sty again.
Wednesday, November 25, 2009
Thirty-three sessions of radiation therapy couldn't blast cancer out of my body, and chemotherapy didn't work, either. So now it's up to a drug called Erbitux (Cetuximab) to succeed where all of the other treatments have failed.
Another episode of spontaneous bleeding delayed my departure from home Wednesday morning. By the time I got the flow of blood under control and dumped another sealed bag of bloody gauze and bandages in the Dumpster behind my apartment, I was a half hour behind schedule.
I made it to Kaiser's Oncology Department on time for my scheduled appointment, but not early enough to claim one of the select private or semi-private rooms in the oncology ward. By the time I checked in and had my vitals taken, all of the rooms had been filled and patients were being assigned to individual chairs in the high-traffic open area around the nurses' station.
I plopped myself down in chair No. 5 —all 131 pounds of me— opened the newspapers and waited for the day's adventure to begin.
Before long a nurse named Gilbert —wearing scrubs that were inside-out— came along to get the action under way. Gilbert started an IV on my left arm and began feeding me Benadryl before beginning the cancer drug du jour.
Today's dose of Erbitux was expected to take about two hours to deliver, and I hoped to spend as much of that time as possible asleep. The chair I had been assigned to, however, had seen better days: the only way I could recline was by leaning all of the way back and propping up the footrest with my kneecaps.
Around that time I realized that a woman sitting opposite my station had initiated a staring contest. Every time I looked up, her eyes were riveted on me. I held the newspaper over my face to get her to stop but each time I peered over the top of the page she was still staring at me. I shut my eyes and hoped the Benadryl would lure me to sleep but even then she didn't get the clue that I had no interest in a stare down; whether I liked it or not, I was her guy.
In desperation to make her stop staring, I got up, unplugged the IV stand from the wall and walked to the rest room.
While checking the bandages on my face, I was struck by something that had escaped my notice before today: Either Kaiser has installed fun-house mirrors in the johns in the oncology ward, or my head is getting rounder. I may have begun my cancer odyssey bearing a resemblance to Ben Stiller, but I've definitely moved on. Draw three circles on my forehead and you got yourself a bowling ball.
When I resettled into my chair, the woman who had been staring at me was now getting an IV of her own started. She left me alone for the rest of the visit, but I memorized her features in case I spot her in the ward when I return next Wednesday.
By noon, the Erbitux bag was empty, so Gilbert in the backwards scrubs came around to remove the IV and hand me my schedule of treatments. Barring intolerable side effects, I have eight more Erbitux sessions scheduled between now and the end of January.
Too bad it's too late to arrange to hop a red-eye to New York City. With my head swollen as it is now I bet I could I slip into tomorrow's Thanksgiving Day Parade as —good grief!— a Charlie Brown balloon.
Tuesday, November 24, 2009
At midweek, the theme for T.P. is T.C.B.
Ain't no time to wallow in the miserable medical news my doctors have been feeding me lately; I've got business to take care of.
Today I met with a benefits counselor at AIDS Project Los Angeles about applying for Social Security and disability benefits. I'm not quite ready to take that plunge yet but I know that the day is coming and this year has been full of surprises. Last week I made an appointment to discuss my options with APLA's Benefits team and today I walked out of APLA carrying 77 pages of forms to complete.
Yesterday I asked a friend to call Kaiser to get me an appointment to have my right arm looked at. Late last month, I twisted my arm in my sleep and the pain has been getting progressively worse ever since. The doctor I saw yesterday said that I sprained a muscle group in my arm, and I need to see a physical therapist to get it back in shape. As I wait for that referral, I'm allowing extra time to perform functions like buttoning my shirt and fastening my seat belt.
After the doctor looked at my arm, I asked him to take a peek at the bloody, pockmarked battlefield that used to be my chin. The cuts made during last month's biopsy remain murderously slow to heal and are prone to erupt blood at inconvenient times. Got a referral to a "wound care specialist," and in the meantime I'm stocking up on Johnson & Johnson products.
Next, Kaiser's Home Health Department booked a session with me at my apartment on Friday. Guess that means I can scratch "getting trampled at Toys R Us on Black Friday" off my list of worries. Getting home health services in place now will also allow me to access hospice services if that day arrives.
Finally, I'm having my first treatment of Erbitux tomorrow in Kaiser's chemo ward. My doc doesn't want me to get my hopes up but maybe this will give me the big break I've been waiting for.
Sunday, November 22, 2009
Watching "The Bucket List" was not one of the items on my own bucket list, but it's what I found myself doing the other night.
While pawing through the massive inventory of used DVDs at Amoeba on Thursday evening, I spotted Rob Reiner's 2007 film in a bin of blowout DVDs. I passed up on seeing "The Bucket List" when it played in theaters because the trailers made the film look pretty schmaltzy. I prefer movies to go easy on schmaltz; for that reason I rank "Death to Smoochy" higher in Robin Williams' canon than "Dead Poet's Society."
But the subject matter of "The Bucket List" made the film more relevant to me now than it was two years ago. Morgan Freeman and Jack Nicholson, both cancer patients sharing a room in a hospital owned by Nicholson, both get news from their doctors that they have six months to a year to live. So they compose a list of things that they want to do before they kick the bucket and then spend the rest of the movie doing those things.
Having heard similarly crummy news from my doctor on Wednesday, I wasn't so sure it was a good idea to bring "The Bucket List" home and make it the centerpiece of an evening of entertainment.
In my first attempt to view the film, I didn't get very far. I bailed after Morgan Freeman hears his doctor tell him he has six months to live. I yanked the disc out of the player and medicated on "Everybody Loves Raymond" till I fell asleep on the sofa.
But on Friday, I gave "The Bucket List" another shot.
It does get pretty silly and is completely predictable.
But it got me thinking about coming up with a bucket list of my own. I have no desire to drive a Mustang around a race track, jump out of an airplane at 20,000 feet or see the pyramids, but there are some things I'd like to do before kicking my own personal bucket.
I'm getting a late start, and I don't have a billionaire underwriting my expenses, but that's no reason to not come up with my own list.
And at the top would be "Prolong the amount of time I have before it's time to kick the bucket."
Thursday, November 19, 2009
After the nurses in Kaiser's oncology ward succeeded in halting the flow of blood from the wounds on my face Wednesday morning, they led me back down the blood-dotted corridor and into an examination room to wait for my visit with Dr. B2.
My appointments with Dr. B2 ended abruptly last winter after my blood counts took a nose dive and a third session of chemotherapy was called off. So it had been a good eight months since I had seen Dr. B2 or even been inside the oncology department at the easternmost facility at Kaiser's Los Angeles Medical Center campus.
A lot has happened in the intervening months. I made it to the finish line of my radiation treatments, then struggled with side effects. A PET scan and a biopsy indicated that the treatments had succeeded, then three months later another biopsy cut my career as a cancer survivor short.
Lately my doctors have begun telling me that there's not much that can be done so a lot was riding on what Dr. B2 had to say.
He turned out to be the most pessimistic of all.
"Your cancer is present in a widespread area," Dr. B2 said. The fact that my face is slow in healing from the biopsies indicates how aggressively the cancer is moving, he added. "I don't think that more chemotherapy would be helpful at this point."
I tried to take careful notes but my pen kept slipping out of my fingers and skidding across the page.
"Will this kill me eventually?" I wrote. "And how soon might that happen?"
As soon as I held the note pad up for Dr. B2 to read, I regretted asking that question.
The doctor's reply was unexpectedly blunt. "The cancer is likely to cause some kind of issue —difficulty swallowing or bleeding, perhaps— and that will probably end up killing you. As for the time frame, it could be less than six months. Maybe longer."
While Dr. B2 doesn't expect much of a benefit, next Wednesday, he's starting me on a type of chemotherapy to try to slow the cancer down. This drug, called Erbitux, is limited in how helpful it can be, and he warned that the cancer will progress whether I do the new treatment or not.
It was a lot to handle all at once. Left alone in the examining room, I sent a text message to my best buddy telling him that Dr. B2's assessment was the gloomiest yet. My buddy asked me if I wanted him to come down to Kaiser, and I said yes.
Before I knew it, he was there. My cancer may be moving aggressively, but my friends can move even more swiftly when they know that I need them by my side.
Next step is seeing what this lil' ol' drug Erbitux can do for me. Dr. B2's expectations could hardly be lower, but it's up to me to prove him wrong.
I'm in no mood to start leafing through hospice brochures.
Wednesday, November 18, 2009
While waiting in line in the Oncology Department at Kaiser this morning, I unfolded the newspaper and skimmed the headlines.
Suddenly, a photo of President Obama touring the Forbidden City was bathed in a violent circle of blood. Seconds later —splortch!— another bombshell of blood fell on the paper. And another! And another! Run for cover, Mr. President!!
The blood was falling from two holes in my chin, where two weeks ago Dr. B1 sliced off slivers of skin for biopsies. The holes in my face have been extremely slow to heal, and I have been applying fresh bandages every day, but this was the first time that I've had a bleeding crisis in public.
At least I chose the right place for it to happen.
I hurriedly stepped up to the counter to get aid. By reflex, the woman said "Your Kaiser card, please," while staring at her computer monitor. Only after she glanced upward and saw my newspaper —now soaked almost to the edges in red— did she realize that this was a situation requiring intervention, and quickly.
She rose and told me to meet her at the door leading to the exam area. I moved quickly through the packed waiting room, keeping the paper below my chin to prevent blood falling upon anything other than Wednesday's New York Times.
Reunited, the woman and I walked quickly down the corridor, toward the nurses' station. I saw that the blood was dripping onto the floor, now. At least I wouldn't have to worry about getting lost when it was time to leave.
Two nurses —both of whom I recognized from my chemotherapy treatments last winter— directed me to sit in a reclining chair. One grabbed a large white towel and placed in on my chest while the other opened a cupboard and collected gauze, bandages and tape.
By the time that they were through, I looked like the Invisible Man. But the bleeding had stopped.
In all of the excitement, I didn't notice what happened to my newspaper. So it wasn't until deep into the evening, hours after my visit to Oncology was over, that I caught up with President Obama and how his visit to the Forbidden City went.
I submit my experience as evidence why print media can never completely be replaced by electronic newspapers. What good would a Kindle reading device have done me in a situation like I had this morning?
Some days, the Luddites win.
Note to my TP peeps: No, I haven't overlooked the fact that today's post tells you absolutely zip about my face time today with my oncologist. There was a lot to absorb, and I need some time to process it all. Come back later in the week.
Monday, November 16, 2009
Boy, am I red-faced tonight. And I'm not talking about the various shades of red below my lip and around my chin where blood continues to ooze from one of the craters that Dr. B1 made when sampling tissue for biopsies almost two weeks ago.
No, I'm red-faced because I caught myself in a major boo-boo.
Throughout the year, my trach and my G-tube have enjoyed co-star status on this blog, popping up at times I want to give you an idea of what it's like to live with a hole in one's neck and a rubber tube punched into my belly.
"Trach" rhymes with "snake" and is short for tracheotomy.
Or so I would have you believe.
Well, tonight I was scrubbing my trach clean of all of the gunk that builds up inside it when I realized I should probably spare myself all of the elbow grease and just soak it for a day or two. And I reached for a fresh trach to wear in the meantime.
Imagine my surprise when I read the packaging and saw that the proper name for a trach is "tracheostomy," not "tracheotomy."
I know that I've been just one consonant short of having the name right, but wrong is wrong no matter how you cut it.
Over the next few days I'll be going backward in time, and correcting all of the instances where I've screwed up the name. But I thought I better come clean with all of you first.
Just goes to show you: You really put your neck on the line when you blog without a safety net.
Saturday, November 14, 2009
Earlier this week, I posted a link to an obituary for my friend Howard Jacobs, an HIV/AIDS activist who died of liver cancer on Wednesday.
I met Howard more than 15 years ago, when he became involved as a volunteer for AIDS Project Los Angeles, where I worked. I edited Positive Living, a monthly magazine at APLA for people living with HIV/AIDS, and Howard was a frequent contributor.
Today I dug deep into my closet to find pieces that Howard wrote for Positive Living. I found nearly a dozen, published between 1994 and 2000. This is one of them:
I Want to Paint My Hair Green
By Howard Jacobs
I said to my best friend, "I'll paint my hair green if I survive this. He replied, "If I survive AIDS, I'll paint my hair green, too.
Today I'm eyeing a bright florescent green. It is a brilliant shade that says hey, world, listen to me. "MY VIRAL LOAD IS UNDETECTABLE and I have 891 T-cells." Isn't that amazing. Just think: I may be a survivor. After an arduous eight-year battle and a quick, yet difficult adjustment to a new drug cocktail that includes a powerful protease inhibitor, I want to paint my hair green. It seems simple. Get a can and spray it, but I can't paint my hair green. If I do that I won't blend in with my community. Unfortunately, not everyone is doing as well as me.
What if I paint my hair pink? Pink is a color that says you're different. It reminds me of the ACT UP marches I attended, the safer sex demonstrations I gave and the lobbying visits I made. During the Holocaust, if one wore a pink triangle it meant one was gay. People now use that symbol to represent solidarity. I want to paint my hair pink but I can't. Pink was the color emblazoned on my best friend's tattoo. It said HIV-positive. I'll never see that tattoo again. My friend is dead, along with too many others. These friends can no longer guide me with their words. They guide me with their spirits. Sometimes that makes me sad.
Perhaps I'll paint my hair blue. Blue is my favorite color and has given me luck. I wore a blue short every time I cleared customs in countries which wouldn't allow HIV-positive visitors. I never got caught or suffered the humiliation other foreigners did when entering my own country, the USA. It makes sense to paint my hair blue. It's a color which brings me good fortune although it didn't when I was originally diagnosed. I wore a blue suit the day the company I worked for fired me. They discovered I had AIDS. Soon after they took away my employer-financed, private health insurance coverage. It was a trying time. I want to paint my hair blue, but I can't. Having blue hair may not help my search for a quality job or a kinder corporation.
Maybe I'll paint my hair yellow. Everyone knows blondes have more fun and if I'm going to have a future I'll need to have fun. It's been difficult enjoying myself these past eight years, but I've tried. I visited beautiful places and met extraordinary people yet I've learned living with AIDS means I have enormous responsibilities. These have not been fun. Or easy. It's hard to disclose one's HIV status or care for a sick friend. The vision of my parents' crying eyes as they walked into my hospital room will remain with me forever. I want to paint my hair yellow but I can't. Until there is a cure for AIDS those responsibilities and painful memories cannot go away.
I should paint my hair gray. Gray hair commands respect. Many distinguished gentlemen proudly display their gray hair symbolizing a lifetime of wisdom. I feel I've lived a lifetime. Graduating from college, becoming satisfied with my career accomplishments, living dreams I thought of as a child and burying loved ones: that is a lifetime. I deserve to paint my hair gray but I can't. I'm 33 years old and too young to explain a head full of gray. My chronological age does not match my experience.
That's why I'm keeping my hair the color it is. I'm afraid to paint it. Surviving AIDS makes me afraid, too. The feelings are awesome and the obstacles seem endless. I am unsure I can overcome them but I am ready for the opportunity to outlive them.
I want to paint my hair green but I can't. Not yet.
A memorial for Howard Jacobs will take place at 1:30 p.m. on Sunday, Nov. 15 at Congregation Kol Ami, 1200 N. La Brea Ave., West Hollywood.
Thursday, November 12, 2009
Dr. B1 already let the cat out of the bag about my biopsy results a day earlier, so I didn't know what to expect when I showed up in Kaiser's Head and Neck Surgery Department on Wednesday for my post-op appointment.
Once Dr. B1 entered the exam room and placed a hand on my shoulder, however, I had a gut feeling about what he had to say.
He logged on to his computer and called up my chart and the pathologists' notes. Dr. B1 took six tissue samples in last Tuesday's biopsy, beginning at the base of my tongue, where cancer was first detected in January, and moving forward toward the front of my face. From my chin, he carved out a hole about the size of a dime.
His harvest of flesh struck the jackpot: Each of the samples Dr. B1 captured contained carcinoma. Six skulls and crossbones in a row.
What this means, Dr. B1 explained, is that the cancer did not respond to the radiation treatments and chemotherapy I had last winter, notwithstanding the midsummer biopsy that produced "no evidence of cancer."
"You must feel like you've had a load of bricks dropped on you," he said, then adding that it looks like I'm now "caught between a rock and a hard place."
If I could talk, I would have interjected, "That's two cliches in one sentence, Doc. I'm cutting you off."
He described what a surgical response to my cancer surge would look like. First, my tongue would be removed, and then my mandible. Bone grafts from my leg and arm could make up some of the loss, but whether they would work would be uncertain, and cancer could still return.
The whole thing made me queasy, so I was relieved when Dr. B1 said that surgery wasn't a viable option.
That left chemotherapy as the next option.
I really snapped to attention when Dr. B1 told me that the chemotherapy would not be "curative" but instead "palliative." In other words, he thinks that a cure is not possible. The best that I can hope for is controlling the symptoms of the cancer.
You see the term "palliative care" a lot in hospice brochures. I wasn't prepared to see these words introduced into my medical vocabulary.
Dr. B1 and I spent a long time not saying much of anything to one another. I quietly tried to absorb everything that Dr. B1 had said, and he sat beside me.
After several minutes, he passed me off to Dr. McNicoll, another surgeon in the Head and Neck Department.
I wasn't really clear why I was seeing a new Head and Neck physician after more than a year of office visits and three surgeries with Dr. B1, but I was certainly open to hearing another doctor's assessment of my situation.
Dr. McNicoll didn't pull any punches. He said that surgery would mean cutting off "half of my head," and his take on the chemo was that nothing can really cure me at this point.
So he took the discussion in a new and wholly unexpected direction. He urged me to think about how I wanted to spend my days: doing things I enjoy or running around seeing oncologists and sleeping in hospital beds tethered to an IV.
He added that I might want to see a social worker about an advance directive.
Both appointments were over inside of an hour. And after I checked out with the nurse at the front desk something happened for the very first time: I was leaving the Head and Neck Department without having a return visit set up.
My hub of my Kaiser experience is now drifting eastward, down to the oncology department at the complex on Vermont Avenue. I'll be seeing Dr. B2 there on Wednesday to discuss chemotherapy.
Where this is all going to lead is anyone's guess.
My dad reminded me on Wednesday that when faced with dicey odds, I have a history of proving doctors wrong. I'm counting on history repeating itself.
Wednesday, November 11, 2009
It's Veterans Day and I want to write about a veteran who I have known all of my life.
My dad is a decorated veteran of the Korean War, and I'm very proud of him and the sacrifices he made for this nation before I was even born.
Dad is a vet in more ways than one. After serving in the Army in the 1950s, Dad went on to become a veteran care-giver. He didn't choose that role, but when the times came when his family needed him, he never flinched. He was always there.
This morning, Dad sent an email to remind me of a time in my life when I was facing steep odds, steeper than what I'm facing now.
"I remember when you were about three years old and had a bowel entanglement and went into a coma for a week," Dad wrote. "The doctors did not have much hope for you.
"Your mother and I were with you around the clock taking turns. I remember one Saturday about 6 a.m. I was with you when you woke up and started to smile. I had just opened the drapes in your hospital room and the sun started to shine in. Shortly after that Dr. Schiff came in and when he saw you were awake he said to you that you sure must have a lot of guts as you really needed it to pull through."
Dad isn't happy about the latest news about my cancer fight. But he wrote today that I have to "continue believing in yourself and remember not to give up."
Many years later, Dad was keeping vigil at a hospital after my mother fell ill and was also in a coma for weeks. But Mom pulled through, and stayed with us for another 13 years, thanks to her tough spirit and Dad's boundless capacity to care for her.
Dad's regular emails to me throughout this struggle have lifted me in more ways than I can ever explain. He always tells me that I'm tough, just like Mom. Today's remembrance from Dad reminded me that when I beat this current bout of cancer it won't be the first time I will have caught my doctors by surprise.
Dad has faith in my ability to overcome this crisis. What I want Dad to always remember is that whatever strength I have I learned from him and from Mom.
Thanks for being there for me, for Mom and for Mike, Dad. It has made all of the difference.
I am so lucky to be your son.
I lost a friend today: Longtime HIV/AIDS activist Howard Jacobs dies
Tuesday, November 10, 2009
This year roared in like a lion, and it looks like it's going to go out the same way.
On Tuesday afternoon, Dr. B1 emailed the pathology results of last week's biopsies, and they reinforce the observations made by my radiation oncologist late last month. "The results of your biopsy unfortunately showed a recurrence of the cancer," Dr. B1 wrote today.
Dr. B1 went on to say that he has spoken with other doctors on my Kaiser team, and their recommendation is for chemotherapy treatments. I'll be meeting with a new chemo doc Wednesday at 4, right after seeing Dr. B1.
I would have been surprised if Dr. B1 had told me that there was no longer evidence of cancer, as he said following the biopsy last summer. Just by looking in the mirror, I can tell that something wacky is going on with me from the neck up. This has been obvious to me for weeks. And on Monday, I noticed that the same kind of numbness that I began feeling months ago in my jaw was now advancing into my left ear.
So the bad cells are gaining ground. And the sooner that my doctors and I can initiate a vigorous counter assault, the better.
Saturday, November 7, 2009
Had a mini-meltdown the other day at the end of my workday.
The inside of my mouth was feeling increasingly full and I started feeling dizzy. When my breathing became labored, I was convinced that my airway was closing up and that the janitorial crew was going to have one unholy mess on its hands when it arrived to tidy up the office that night. Or I would have a shot at being picked in an audition for the Blue Man Group.
If I left work right away, I had a chance of getting to Kaiser before the Head and Neck Department shut down for the day. If I didn't get there in time, I would just go down the block to the emergency room. I sent a text message to my best buddy to loop him in on what was going on, and he phoned right away to tell me I should go straight to the ER.
I made good time getting across town to Kaiser so I decided to head first to Head and Neck to see if Dr. B1 was around. It was an economic decision, frankly: The copay for seeing Dr. B1 is $15 but a visit to the ER would set me back 50 bucks. My symptoms weren't getting worse so I thought I wasn't taking an unnecessary risk.
While riding the elevator to the sixth floor, I listed the symptoms I was feeling in my notepad so I could just hand it to the receptionist at Head and Neck as soon as I walked up to the counter.
She greeted me by name, as always, and sensed right away that I was scared. After reading the first few lines of my note, she got on the phone to see if she could find Dr. B1.
He was out for the day, so she found another doctor in the Head and Neck Department. And in just minutes I was sitting in the exam room for Dr. Ditirro, shaking like a leaf.
As soon as Dr. Ditirro entered the room, I thrust my note pad at him.
The first thing he did was check my airway by sliding a camera into my trach. He assured me that the airway was clear and that I was in no danger of suffocating. He said that my mouth was still recovering from the biopsies on Tuesday and that the swollen feeling would diminish.
Based on Dr. Ditirro's calming demeanor, I got the feeling that I'm not the first Head and Neck patient to have an anxiety attack like this. Right away, I felt at ease.
I am fortunate to have been able to walk in off the street and get looked at by a Kaiser provider right away. I thanked Dr. Ditirro for his time, and then spent a few minutes in the reception area steadying my nerves and texting my friend that I was fine.
I know that health-maintenance organizations sometimes get a bad rap from patients; even in this blog I've written about occasional loose cogs I've encountered in the Kaiser system. But those experiences are the exception, not the rule. The quality of care I get at Kaiser is excellent.
Wednesday, November 4, 2009
The end of the year —heck, the end of the decade— is nigh (are bloggers allowed to use prose from the Middle Ages?), and so my hat trick of surgeries for 2009 is now complete.
I really don't expect to go under the knife again any time soon —not for Dr. B1, nor for anyone else. (And if the hoods who mugged me in my alley two years ago happen to be reading this, that means don't come prowling around my neighborhood wielding a blade rather than a gun.)
This time around, Kaiser didn't need me to check in till 11:30 in the morning, which gave me five additional hours of perpetual nervousness about the day's procedure. It also gave me extra time to properly underpack for a brief stay in the hospital.
The last time I had surgery, the folks at the admitting desk wouldn't let me bring my wallet —or any cash at all— with me into the pre-op room. So when I left my apartment for Tuesday's surgery, in one pocket I carried my photo I.D. and my Kaiser membership card and $16.25: 15 bucks for my copay and a buck-and-a-quarter for the subway ride. My other pocket held my house keys and a few bucks in case of an emergency on the way to the hospital.
I also packed my trusty note pad and pen, and a magazine whose name, Uncut, might seem an ironic choice for a guy about to be carved up. (Those of you snickering about the name Uncut ought to be ashamed of yourselves; Uncut is a music magazine, not what you're thinking.)
I sailed through the first few steps at the admitting desk, then found a seat in the waiting room. Without a wallet and carrying not even a penny (I wedged that emergency stash into the crack of my butt), I felt oddly vulnerable. So I reached into my bag for my magazine to try to relax.
I quickly put the magazine away. Uncut has a bold, red nameplate that can be read from across the room, and I didn't like the looks that some guy a few rows away was shooting in my direction. Lou Reed is on the cover of this month's Uncut, and I can imagine a stud like Lou being featured in another kind of magazine with the name Uncut.
Two cops came into the admitting area, along with an old man in a dark blue sweatsuit and a woman around the same age whose face was on too tight. I quickly sized him up as a white collar prisoner on a surgery day pass from San Quentin and I tagged her as his moll, mistress or wife. One of the cops was telling jokes and the crook and his wife seemed to be having a good time, even trading turns squeezing a stuffed animal, but I could tell that they were captives. Hey, remember how chummy Jack Nicholson and Otis Young got with their prisoner, Randy Quaid, in "The Last Detail"? Before I could eavesdrop long enough to get anything dirt on their situation, my name was called.
Before I knew it I was buck naked and fumbling for the strings in the back of my hospital gown. I stuffed my socks into one of my sneakers, my underwear in the other, rolled up my jeans and my shirt, and stuffed everything into a bag, along with Uncut, which I still didn't feel comfortable reading, not around people who are paid to slice guys like me open for a living, if not sheer sport. I laid in the bed with my notepad on my belly, prepared for the pre-op do-si-do of men and women in scrubs. I was kinda chilly, but there was no blanket to be seen.
First, a nurse queried me on the last time I ate (6 p.m. Monday), the last time I took any medication (6 a.m. Tuesday) and asked me to prattle off the names of all of the meds I'm now taking. That list was long before I got cancer and now is only getting longer. (I need to come up with a clever mnemonic for Epivir-Norvir-Prezista-Viread and Ziagen, and newcomers Acetaminophen Codeine Phosphate and Cyclobenzadrine and sometimes Flomax. Anyone help me out?)
Then a trio of anesthesiologists showed up, one at a time, to explain the day's procedure and to review what kind of surgery I would be having. Two of them were convinced that I was having ear surgery in addition to biopsies on my mouth, tongue and face. Another smiled that she would be back soon to give me my "Happy Juice." (If that's how some medical professionals tout that anesthesia to their patients, is it any wonder that Michael Jackson got hooked on the stuff?)
Well, it turned that propofol was not Kaiser's happy juice du jour, because when my next visitor, Dr. B1, came to my bedside, he said that there was a regional run on propofol —and he added that the shortage had nothing to do with Michael Jackson, although it wouldn't surprise me if some overly devoted fans are shipping tanks of propofol to Jacko's mausoleum at Forest Lawn.
Then, one of the anesthesiologists returned to shoot me up with Happy Juice, accompanied by yet another anesthesiologist. As I watched one of them approach my bed, my heart raced when I saw she was carrying a blanket. Imagine how I felt when, after reaching the foot of my bed, she let out a huge yawn and wrapped the blanket around herself. (Hey, Dr. B1, I may have smoked out an explanation for the shortage of Happy Juice in Kaiser's fridge.)
Finally, the nurses came to wheel me into the operating room. This is my favorite part of surgery day: the dramatic ride down hospital corridors. This time, they didn't wheel me around aimlessly until the anesthesia took hold; I actually remember being brought into the operating room, and what a shiny, gorgeous showroom of gore it was.
And that was the last thing I remember before surgery. When I came to, it was already 6:30 p.m., and both of my guardian angels had been called to come drive me home. Because the call came unexpectedly late, Guardian Angel Tweedledum deferred to Guardian Angel Tweedledee —I know, I know: that's no way to talk about one's Guardian Angels— and before long Tweedledee showed up at my bedside.
But I sent him away for an hour or so. You see, my bladder felt full, but I couldn't bring myself to pee. This happens to me a lot, but usually only in men's rooms with no dividers between urinals. When it happens to me in a private hospital john, I know that the anesthesia I was given may be wreaking havoc on my urinary tract.
To be on the safe side, I asked Tweedledee if he could find something to do as he waited for my text to alert him that I had successfully peed. Luckily, urine did flow before long, and I felt comfortable enough to check out, hop in the wheelchair and ride to my friend's car in the parking lot, making a pit stop at the pharmacy for Band-Aids for the oozing scabs on my face (Tweedledee paid. What was I gonna do: fish three bucks out of my butt and hand them to the pharmacist?!).
By the time Tweedledee and I got to my door, it was pushing 9:30. It had been a long day.
And it's going to be a long week of waiting for the first results of the biopsy to roll in.
P.S. to Tweedledum: Don't be cross I assigned you the less appealing moniker of the two. You know I love you, too.
Tuesday, November 3, 2009
Monday, November 2, 2009
I'm making no predictions about what Dr. B1 will or will not find Tuesday afternoon when he slices tissue in and around my tongue for a biopsy, for the third time in 10 months.
There's only one guarantee about tomorrow, as far as I can see: When I get wheeled into the recovery room at Kaiser following surgery, no nurses are going to flutter around my bed mistaking me for Ben Stiller.
With the horrifying transformation of my face over the past several weeks, my days of faux celebrity-hood at Kaiser have come to a close. If anyone were to confuse me with anyone famous, I think it would be a hybrid of Freddy Krueger and the Incredible Mr. Limpet, with a hint of Nixonian jowls tossed in for good measure.
But the changes in my face are occurring at an alarming pace, so who can predict where my mug is ultimately headed?
Every now and then I'm tempted to take another self portrait and post it here so all of you can see what I'm talking about. But I don't want to shock anybody and I probably shouldn't embarrass myself.
And I'm grateful no one I saw at the office today took a look at me and said, "Hey, Serchia! Don't you know that Halloween is over?"