Thursday, December 31, 2009
If my neighbors are paying any attention at all, they may be thinking that I'm turning tricks in my apartment these days.
What else could explain the steady flow of unfamiliar gentlemen and ladies showing up at my doorstep this week? Since my family left on Monday morning, the rapping at my door has been incessant.
It began on Monday with a visit from a social worker in Kaiser's hospice program. Shortly after she left, a guy delivering medical supplies arrived, followed closely by a man bearing a plain paper sack filled with drugs from Kaiser's pharmacy. Monday night, a burly fellow with arms the size of tree stumps brought me more medical supplies in three separate trips. Early Tuesday morning, a friend came to visit, and soon after he left more medical supplies showed up. Wednesday, still more medical supplies were delivered, and midday a Kaiser nurse case manager stopped by. Thursday, I was visited by another friend, accepted a FedEx package and a Kaiser physician paid a call on me.
I used to have a reputation as the guy in the building who kept pretty much to himself, leaving home early in the morning and coming home late at night. Now my lights burn nearly around the clock and my front door swings open more than the turnstiles at Union Station spin.
And the feng shui of my home is on the defensive. With all of the new supplies being hauled in, my apartment is beginning to resemble the set of General Hospital.
Let's start with the big oxygen tank that now dominates my bedroom. It's steel; it's industrial green in hue; it stands as tall as a Christmas tree. The thing looks like the missile that Slim Pickens rode bareback in Kubrick's Doctor Strangelove. Yes, this oxygen tank may save my life some day, but couldn't it be designed to fit in with the contemporary single man's bedroom decór? Painted a pale pastel, it wouldn't scream "A SICK PERSON SLEEPS HERE!!!" nearly so loud.
And then there's the oxygen tank's sidekick: a whirring machine on wheels that has the height and girth of R2D2. This device may ultimately turn out to be a life saver too, but wouldn't it be just as effective at half its size?
I can't kvetch much about a few additional pieces that also arrived this week.
The suction machine that arrived on Wednesday doesn't take up that much space. Even better, it's portable and includes a discreet carrying case that would allow me to take it with me the next time I shop at the Grove and think that I may need to clear secretions from my trach while I browse the racks at Abercrombie & Fitch.
The LifeLine device that will enable me to contact outside assistance in the event of an emergency is as compact as it is essential.
And the air mattress doesn't look like it's going to take up a lot of square footage, once I figure out how to blow the damn thing up.
My Kaiser case managers are always cautioning me about accidentally falling in my apartment with no one around to help me up. But the way I see it, each new medical gizmo that gets dragged into my home only raises my tripping potential.
And I've only been part of this program for less than a week. Who knows what surprises the next delivery man has in store for me?
Tuesday, December 29, 2009
Man, I really cleaned up on Christmas loot this year.
In addition to being visited by Santa Claus sometime after going to bed on Christmas Eve, at 9 a.m. on Christmas morning, a woman I'll call Susie Claus dropped by.
Susan is my nurse in Kaiser's hospice program, and I'm one of that program's newest patients. When Dr. B2 referred me to the hospice program after pulling me off my cancer treatments, I didn't really expect the wheels to turn very quickly —certainly not as quickly as they have.
This hospice team ain't messin' around.
I met with Susan in my home for nearly three hours on Christmas Day; had a long meeting with Vicki, the social worker on Kaiser's team on Monday afternoon; and on Wednesday the physician overseeing my case is coming by.
Getting this much attention from a huge HMO like Kaiser during a holiday week is pretty extraordinary, in my book.
During Susan's visit, she performed a handful of miracles while making calls on her cell phone on my living room sofa. Watching her work was dizzying.
She got me access to five new medications to manage pain and cope with some of the side effects from cancer I have been experiencing, and we were able to pick up each new drug on Christmas at one of Kaiser's pharmacies. I'm not prepared to break the seal on the morphine bottle but I sure was glad to get my hands on that constipation prescription.
After I told Susan that I often experience shortness of breath as I move around my apartment, she facilitated an order for an oxygen machine to keep at home. She also ordered an air mattress so I can avoid getting bed sores, and a suction machine so I can clear the secretions that build up in my throat more effectively. (Susan warned that the company responsible for delivering the equipment is notoriously unreliable, and sure enough, I'm still waiting to come through, three days later. But at least I know that relief is on the way.)
Vicki, the social worker I met with on Monday, is every bit as efficient as Susie Claus. During the two hours we had together, she helped me advance some other key needs, including a MedicAlert bracelet to summon for help in case of an emergency and special telephone devices to help me communicate better despite my speech and hearing impairments. And Vicki has been nagging the medical equipment company to deliver the items that I need.
I'm not going to pretend that everything is beautiful these days in the Life of Paul. Any way you look at it, it does suck to be sick enough to require hospice care. There are other practical matters that I'm addressing that I'd just as soon rather not face.
But I know that these things have to get addressed. With the support of Kaiser's team and my family members and friends, I'm tackling these issues, too.
Monday, December 28, 2009
Apologies for neglecting this blog, gang!
A bevy of family members swept into town last week for the holidays, so my energies were directed toward them. But they all have gone back to Tennessee, Colorado, Arizona and San Diego now and I'm settling back into my routine, so I'll be posting the latest news over the next day or so.
Here's a photo of me and my dad, who spent the past four nights with me. I hadn't seen Dad since my mom's funeral in September 2007 so it was wonderful being with him again.
As Dad left my apartment to head to LAX this morning, he turned around, gave me a thumb's up and said "You're going to make it, Gus. You're going to make it."
Dad, I'll try my best not to let you down.
Wednesday, December 23, 2009
Just when I thought I had seen it all, my trach showed me Wednesday morning that I still have a thing or two to learn about living with fake body parts.
After climbing into bed around 11 on Tuesday, I tossed and turned for hours, unable to get comfortable enough to sleep.
For one thing, Dr. B1 had re-dressed the wounds on my face on Tuesday afternoon, and I didn't have a lot of confidence that the bandages were going to hold through the night. He held the dressing in place with a single strip of tape; when I replace my own dressings, I all but lock the bandages into place with long strips of duct tape.
Also, Dr. B1 replaced my trach collar with one that felt differently around my neck and I was having a hard time getting used to it.
Finally, my left eye was popping open every five or 10 minutes, which kept a dream that I was having about Jon and Kate Plus 8 from getting under way.
I finally drifted off to sleep around 3 a.m.
About an hour later, I woke up after my nose rolled over something hard and smelly. To my alarm I saw my trach on my pillow —not only the removable plastic cannula that fits inside the trach, but the trach itself. And the trach collar was dangling from my neck.
I bolted out of bed, ran to the bathroom and put all of the stray pieces back inside my neck, where they belonged.
What happened? Beats me, gang.
Maybe one of Jon and Kate's Plus 8's brats were monkeying around with the trach in the dream that I had. Or maybe I had removed the trach to slip under my pillow so that the Trach Fairy would come visit.
I haven't checked the commodities listings for Fake Body Parts lately; a trach with less than a year of wear might yield five or ten bucks in today's Fairy market.
Whatever it was, I can't risk lose any of my fake organs just because I can't get to sleep at night and start clawing at my body in a reckless, willy-nilly fashion.
Tonight, I'm giving my G-tube the duct tape treatment.
Monday, December 21, 2009
The collar that holds my tracheotomy began the day gray, but during the course of the day it caught a whiff of some holiday spirit and turned as red as Rudolph's nose.
I first realized what was happening as I was caught up in episodes from the fourth season of Seinfeld. I thought I would just watch one or two while I fed myself lunch but I couldn't stop watching, and before I knew most of the afternoon had gone by and I had spent all of it in Seinfeld's universe.
Around the time that Kramer and Jerry accidentally dropped a Junior Mint into the surgical cavity of Elaine's boyfriend during an operation, I felt dampness on and below my face. I ran my hand along my neck and when I looked at my fingers they were red and wet.
When I got to the bathroom mirror I realized that my trach collar and half of my face was drenched in blood flowing from the wounds resulting from my biopsies on Nov. 3.
After weeks of persistent bleeding and a few visits to my doctor for help, it finally looked like these wounds were beginning to heal. Then my head suddenly began to swell in new directions last week, stretching out the skin in my face and interfering with any healing that was under way.
Today's episode of bleeding was the scariest yet.
I changed all of the bandages —about 10 bandages of varying sizes are needed to cover the affected area— and mopped up the blood that had trickled down my neck to my chest and stomach.
And then I hopped on to the computer and e-mailed my doctor to beg for help. It's crazy to still be dealing with wounds that are stubborn to heal six weeks after the surgery took place.
Maybe I should follow Kramer's lead and plug up the holes with a few Junior Mints.
Saturday, December 19, 2009
I gotta envy that animatronic Abe Lincoln that returned to Disneyland's Main Street Opera House the other day.
The life-size robot of our 16th president sure looks lifelike —far more lifelike than I look or feel these days.
Linc blinks, which is more than I can say for at least one of my eyes.
Sometime over the past few weeks, my left eye stopped blinking. My doctor says that it's a consequence of cancer on my central nervous system.
An unblinking eye can cause vision damage, so my doctor immediately prescribed eye drops so I can get some moisture in my eye and an ointment to help me keep the eye shut when I sleep.
He said that I can't overuse the eye drops. At the rate that I've been dropping the lubricant in my eye, the 15 mL bottle he prescribed will be depleted in no time and I'll be back at the pharmacy for a refill. Maybe I'll get a keg of the stuff.
As for the ointment, my doctor says that I should use it to "sort of glue your eye closed" when I go to sleep at night.
I see potential for all kinds of disaster. If one eye is asleep and the other glued shut, how will I be able to aim at the toilet when I get up during the night to pee? What happens if I roll my head during the night and glue my eye to my pillow? What if mistakenly grab the tube of eye ointment when I need to apply Preparation H instead?
I guess all of these issues will resolve themselves over time, and using the new drugs will become second-nature to me.
What really worries me, however, is the possibility that this new symptom may spread to my right eye.
With two unblinking eyes, and a red-and-white dress, I'd be a doppelganger for Little Orphan Annie.
Thursday, December 17, 2009
After just four treatments, my oncology doctor has yanked me off the drug Erbitux.
I had been counting on Erbitux to succeed where radiation and chemotherapy had failed, but toward the end of Wednesday's treatment in the oncology department, Dr. B2 told me that it's not producing the results we need in order to knock cancer out of my system.
Erbitux never really looked promising to Dr. B2, but he thought it was worth a shot. At this point, he said to me on Wednesday, continuing with treatments probably would do more harm than good. I didn't press him on that point, although in hindsight I wish I had.
Dr. B2 said that he was handing me off to the hospice program, and I'm waiting for a call from hospice now.
A lot of "what if" scenarios have been piling up in my head lately and airing those concerns with a social worker seemed the best thing to do. A friend called the Social Work Department on my behalf, and facilitated a visit from one of the staff during Wednesday's Erbitux infusion.
At the head of my list of concerns is what to do about an advance health care directive. Up till now, making decisions about my health care has been my responsibility, but I need to think about what I want to happen if I'm not able to make decisions on my own. The social worker gave me all of the information and legal forms to complete.
She also gave me the Department of Motor Vehicles application for handicapped parking privileges. As hard as it is for me to admit, I can really use a handicapped parking placard; it's not uncommon for me to get winded after walking from one room of my apartment to another.
I wish I could post happier news on this blog today —after all, 'tis not the season for tidings of gloom.
All I can say is no one knows what will happen next.
Tuesday, December 15, 2009
Not feeling up to developing complete thoughts today, but here are some scatter shot observations ricocheting in my head:
- Eek! My cancer has spread to my Facebook page. From my home computer, I'm not able to post or comment on Facebook. I'm even more mute there than I am in real life.
- I watched "The Wizard of Oz" last night with the English subtitles. Turns out I have been singing incorrect lyrics for the Munchkins' independence song for my entire life.
- I was no fan of Dick Cheney during the Bush years, but in hindsight the candidates that the Democrats picked in 2000 and 2004 —Joe Lieberman and John Edwards— turned out to have Prince-of-Darkness mojos of their very own.
- I miss getting up and going to the office every morning, but the midday naps I've been able to take lately just can't be beat.
- Regarding that problem I'm having with Facebook, I don't know if I should invest time and energy in restoring my Facebook voice, or whether it would be smarter to wait for Facebook to go the way of MySpace.
- My employer erased my voice mail greeting on the office line, which I recorded long before losing my voice last year. If you have any recordings of my voice, you got yourself a bona fide collectors item.
- Given all that I should be thinking about and doing, is watching old Seinfeld episodes from sunrise to midnight a wasted day?
- The album title I chose for my car's vanity plate almost 10 years ago has been named the Best Album of the Decade by Rolling Stone magazine.
- I finally figured out a way to sleep that prevents me from rolling over on my side and hurting my bum rotator cuff, but if you were to walk into my bedroom in the middle of the night, you'd think that you had stumbled upon a crime scene.
- Now that I know that my left eye does not shut or even blink, my new nickname for myself is "Cyclops."
Monday, December 14, 2009
I'm getting the feeling that cancer has gotten into the cockpit of my brain and is messing with my control panel —spinning dials, flipping levers and punching buttons, just to create mischief.
A few friends mentioned recently that my left eye is blinking at a different rate than my right eye. Well, while replacing the bandages on my chin Monday morning, I stared at myself in the bathroom mirror and realized that the left eye does not blink at all.
In fact, unless I shut my left eyelid with my fingers —you know, the way priests and doctors do in the movies when they realize that someone is dead— I can't close my left eye at all. This is really creepy, gang. No wonder I have trouble sleeping.
And it explains another weird symptom I've noticed over the past few weeks: every so often, my left eye has been tearing up. I figured I was just becoming a big crybaby but now I'm thinking that cancer is just playing with the knobs in my brain that control my left eye.
It's not only my eye that is acting up: I'm also essentially deaf in the left ear now. That side of my face has been growing gradually numb, and now it has knocked out half of my hearing ability.
Yet another symptom is probably not cancer's doing but a side effect of the Erbitux treatment that I began three weeks ago. At nighttime, my facial skin gets slightly greasy, and I feel slight bumps along the sides of my nose. This must be the onset of the rash that Dr. B2 told me that I can expect as a result of my new treatment.
All of these things have been happening at a brisk pace, which makes me dread what new surprises may be lurking around the corner.
Christmas is in about 10 days, and family members from three states will be coming to Los Angeles to celebrate. I've got just one item on my list for Santa Claus: Don't let cancer get in the way of me having a good time with my family on Christmas.
It's a lot to ask, but not too much to hope for.
Wednesday, December 9, 2009
My third Erbitux treatment on Wednesday was happily uneventful.
There's not much I can write about sitting in a Barcalounger for four hours tethered to an IV drip. The drive home from Kaiser, however, was another story.
I decided to swing by Skylight Books in Los Feliz to see if copies of San Francisco Panorama had arrived yet. The Panorama is an actual newspaper published on Monday in the Bay Area and as soon as I read about it I knew I had to own it, despite its $16 price tag. (Sound a tad high to you? Eh! —it won't be long before the Sunday New York Times costs just as much.)
Parking is always tough on Vermont in Los Feliz and I didn't even have change in my pocket to feed a meter. But a loading zone space right in front of Skylight Books was open as I approached the store. I figured I could easily get away with sneaking a few minutes in a loading zone without getting a ticket, so I pulled over to the curb.
As soon as I shut the car door, I got a queasy feeling that something was not right. Peering through the window, I saw my car keys still hanging in the ignition, and both doors to the car were locked.
I'd like to blame the Erbitux for my foggy-headed behavior but there are readers out there who would never let me get away with that. Truth is, this type of ditziness has been my calling card for about half a century.
I know myself well enough to always make sure that my AAA dues are paid up so they can bail me out in situations like this.
I walked into Skylight and stepped up to the counter. First I handed a note to a woman named Mary asking if they had Panorama in stock yet (Mary said that they didn't) and then I handed Mary a second note asking if she would mind calling AAA for me so I could get into my car.
Mary said she was happy to help me out. I handed her my cell phone and my AAA card and a note with all of the details that AAA Roadside Assistance asks when a member needs help. (I'm way too familiar with how this process works.)
Less than 15 minutes later, a AAA driver pulled up and unlocked my car.
Didn't even get into trouble for illegally parking in the loading zone. I got home in time to stay on my feeding and meds schedule and to get in a long nap to sleep off the Erbitux.
Sometimes I am far more lucky than I deserve.
Tuesday, December 8, 2009
Cancer seems to be working full time to defeat me, so I have to work double shifts to stay one step ahead.
And that doesn't leave any room in my life for my job.
Although my medical leave officially began last week, the reality of my situation is only beginning to sink in now. On Monday, I went into the office for a few hours to wrap up some loose ends and give my boss all of the passwords that she needs to access various programs on my computer. (Tip to the TP community: Avoid creating passwords like "So-and-so is a poo-poo head" even if that helps you remember them.) And I also had to turn in my key to the building: an act that shredded my heart just as much as it liberated me from my job responsibilities.
When I left the office on Monday, I tiptoed out the back door after sending an email announcing my leave. Despite everything that has happened, there's a part of me that hopes I'll wake up one morning and be completely healed and ready for the labor force again.
On Tuesday a work colleague and friend I've known for decades visited. The few hours we spent together mixed reminiscing and discussing resources at Kaiser that I haven't yet tapped into. He also expanded my support network by offering to accompany me to my Erbitux treatments or other medical appointments. And he made me giggle —well, I tried my best— by showing me a photo of the two of us from 20 years ago in which I'm sporting two pretzels in place of eyeballs.
Yesterday another friend —probably mindful that my new income situation will force me to cut back on movie outings and shopping sprees for used DVDs at Amoeba— generously gave me a gift subscription to Netflix.
And on Sunday a friend I met through AIDS/LifeCycle slipped a card to me at an ALC holiday party. When I opened the card at home, I saw a ticket to Disneyland. This friend knows how much I love the park and also knows that I haven't been there for more than a year.
So while one of my chief fears about going on leave from my job was going stir crazy in isolation at home, I'm feeling far from isolated these days, and grateful for the support.
On Wednesday: another round of Erbitux, some blood tests and maybe a call on the social work department at Kaiser. Without the pressure of needing to return to the office, it'll be nice to handle these appointments at my own pace.
Andy, Ed, Chris E and Mel: thank you for making these early days of full time cancer-fighting easier for me.
Sunday, December 6, 2009
Got myself in a little hot water this weekend.
With all that has been going on in my life and all of the changes that I've been going through, I've managed to overlook something important.
Like, my anniversary.
And not just any anniversary, either —I overlooked my first anniversary, and that establishes a rotten precedent for all that will follow.
Yep, it was one year ago yesterday that I checked into Kaiser's Los Angeles Medical Center and got hitched to my G-tube.
Or maybe the G-tube got hitched to me. Whatever. I slept through the whole ceremony. My point is getting hooked up to my G-tube was a pretty big event and I'm a cad to not acknowledge it yesterday.
So right now my G-tube is giving me the silent treatment. During our three meals together on Saturday and all during breakfast this morning —not a word.
The funny thing is, I didn't really expect my G-tube and I to last this long together.
We are so different from one another. I'm made of flesh; my G-tube is made of rubber and plastic. I like a little variety in my diet; but all my G-tube allows me to put inside of it is Isosource and my medicine. And I like to think of myself as being somewhat outgoing, but all my G-tube ever wants to do is hang around.
So it's something of a surprise that we made it this far together without going separate ways. And believe me, I have been tempted at times to grab a pair of scissors and call off our relationship.
The reality is, however, as much of a nuisance my G-tube is, without it I'd be a goner. I've poured about 995 cans of Isosource down my G-tube's hatch over the past 365 days, and if I didn't have that option, I'd have starved to death long ago.
And it doesn't look like I'm going to be able to feed myself through my mouth again anytime soon, so I better do everything I can to stay on my G-tube's good side.
Thursday, December 3, 2009
Barely eight hours into the first day of my medical leave from my job, I can already see that this staying-home-from-work jazz is gonna suck.
I'm missing everything about my job, even those things about jobs that are universally hated.
In the long run, however, negotiating a medical leave with my company's HR director was a good decision. So if I may take a cliché and adapt it to my sorry situation:
I'm gonna stick to my gums.
I can already see some of the upside of staying home sick.
When my usual waking time rolled around this morning, I didn't have to drag myself out of bed and get ready for work, despite not having a full night's rest. Instead, I knocked my alarm clock to the floor, and went back to sleep for another hour.
The alarm clock bounced beneath the bed, I think. Sometime before the end of the year, I'll make an effort to look for it.
Later in the morning, when I was struck by fatigue and struggled to keep my eyes open, I didn't have to hide how I felt from my co-workers. Instead, I threw a blanket over my head and treated myself to a nap.
And when secretions built up in my mouth and throat and needed to be expelled, I didn't have to duck into the bathroom at the office to discreetly clear them. Instead, I was able to grab a paper towel and take care of business without regard to how disgusting I sounded or disrupting my office mates.
I'm not sure how long my medical leave will last although I have promised myself that it won't last a day longer than necessary. But the pragmatist in me has already collected the forms that I need for long-term disability and assistance from the office of State Disability Insurance, and I'm completing them as quickly as my bum right rotator cuff allows.
As long as this leave lasts, I do know that each and every day I am going to need to seek out some kind of interaction with another human being.
Today I had plenty. I went to Bed, Bath & Beyond to find a new pillow that help me train myself to sleep exclusively on my back and avoid rolling over on my side and keep my right rotator cuff from healing. Every six feet, a bright and buoyant BB & B employee chirped, "Hello! Are you finding everything that you need?"
I know that it was in their job description to do that, but it still felt good.
And early this morning while feeding myself breakfast I picked up the phone and heard my aunt's voice on the other end of the line.
I didn't do such a hot job at keeping up my side of the conversation, but it was a real treat to hear her voice. And I don't think that she called because it was in her job description.
A community memorial for HIV/AIDS activist Howard Jacobs will be held at 3 p.m. on Sunday, Dec. 6, at Fiesta Hall or the Community Rooms at Plummer Park, West Hollywood.
Wednesday, December 2, 2009
After more than a year of dealing with head-and-neck medical issues, it was almost refreshing for a crisis to erupt in another region of my body.
I've been experiencing sharp pains in my right arm for about a month —to the point I can't lift my right arm, reach for my wallet with my right hand or carry anything heavier than a Q-tip with my right arm.
For weeks, I just wished that the pain would go away, and compensated by substituting my left arm instead of my right. In the meantime I've been having a dickens of a time doing things like tucking in my shirt, shifting my car's gears from Park to Reverse and even typing.
Last week an internal medicine doctor at Kaiser told me that it looked like I sprained a muscle group in my right arm, and he referred me to Physical Therapy. My first appointment was on Wednesday morning, before I headed down to the oncology department for my second treatment with Erbitux.
The therapist asked me to doff my shirt —at 131 pounds, I won't be gaining any recruits from Team Jacob— and asked me to tell him when I felt pain as he maneuvered my arm. It didn't take him long to determine that rotator cuff was injured.
He worked on the arm for about a half hour and showed me two exercises to perform at home three times a day. More important, he said it was critical that I stop sleeping on my side, in order to allow the rotator cuff to heal.
How the injury happened —jeez, I have no idea. I got an H1N1 vaccine in my right arm one evening, and as I slept that night I remember hearing a pop in my shoulder region. From that point, the pain slowly escalated.
I'm counting on the arm beginning to heal, even if I have to learn how to sleep hanging upside-down in my closet, like a bat. I'll be seeing the therapist again in two weeks and I should see progress by then.
Meanwhile, it's nice to have a medical condition that can be treated without using radioactive voodoo or debilitating courses of chemotherapy.