I knew the drill
Three years ago, a writer shared his struggles with brain surgery. Today, he takes us back to the operating table.
So here’s the poop on Brain Surgery II. (Actually, we will get to that in a minute.) Brain Surgery, the Sequel—the account of BS-1 is here—was, and still is, a complicated procedure to ease my aggressive early onset Parkinson’s disease. It is made less complex by master neurosurgeon Dr. Conrad Pappas, who has done hundreds of neurological procedures. I call him “Zen Master Pappas-an” because he is unflappable while deftly planting a wire that picks up where my dying brain cells leave off. Plus he can talk/debate any subject while mining the gray matter, though I am careful not to cross him.
Deep-brain-stimulation surgery is not a panacea, but it is still the best thing going for most of the shaky set. DBS is a lengthy procedure during which the surgeon uses a surgically implanted, battery-operated medical device called a neuro-stimulator—similar to a heart pacemaker and about the size of a stopwatch. It is implanted in the chest area; I joke that I now have matching male pectoral implants, or man-boobs.
The chest implants are connected via a wire that runs along the neck to a needle-sized brain implant. The neuro-stimulator delivers electrical stimulation to targeted areas in the brain that control movement, blocking the abnormal nerve signals that cause tremor and Parkinson’s symptoms. The neuro-stimulators are programmed by medical personnel and can be turned on or off by an ordinary looking remote that fits in well with my 11 remotes that control everything from my garage door to my DVD player. My wife, if she wants to, can literally turn me off if she is upset at something I say or do. It therefore is usually in my interest to hide this remote.
DBS is a risky procedure that has gained popularity with advanced-PD patients, as it is especially good at easing tremor, rigidity and PD medicine side effects, namely dyskinisia, the weird, involuntary, snakelike movements often seen in an overmedicated Michael J. Fox and mocked by Rush Limbaugh.
And unlike earlier Parkinson’s surgeries that literally burned good brain cells to rid the brain of the bad, DBS is reversible—all the hardware can be deactivated or removed—if something better comes along. Despite being told six years ago that there would be a cure in five years (every newly diagnosed patient seems to get the “five-year-cure” speech so they won’t go jump off the nearest bridge when told they have this dreadful disease), I am not holding my breath, because, as comedian Chris Rock put it, “They’re still mad at all the money they lost on polio! … They don’t cure shit. They just patch it up.”
A little blunt, but point made. Aware that the polio vaccine came along when Eisenhower was president, I therefore went back for more drilling.
Having what the medical literature calls an “opening” still amounts to a drill burrowing into your skull while awake, no matter how you slice the gray matter. “It’s a fine white powder, no chips,” Pappas pointed out when I joked I wanted to make a skull fragment anniversary necklace for my wife.
“I wonder if Keith Richards would snort that,” I countered as his fingers continued to waltz with my cranium.
But having been through this once before, I knew more or less what to expect. DBS is not an easy operation, but it took me some 40 years and change to figure that few things worthwhile in life are easy. There is pain. And done right, there is gain. And I am happy to say, I got good early results, with a reduced tremor and less rigidity on my right side, though my ballet career remains on hold.
Still, there were some revelations amid the return to Skullfest II.
I knew the drill and had complete confidence in the man holding it. I don’t much like the drill, or wires, or—the worst part—the head cage that you wear for about seven hours and the four stinger skull bolts that keep it and your head firmly in place. But being a bit of a riverboat gambler, in addition to enjoying the use of the right side of my body, which is getting increasingly jealous of the side that had DBS in 2004, I figured with good results the first time that rendered the left side useful, I’d double-down. Pappas did such a good job with the operation that the strongest thing I am on post-op is Tylenol and Milk Duds.
Even though my inability to sign my name was a big reason I was having this operation, I knew this time around to scribble “secular humanist Welsh Buddhist” on my advance-directives form to confuse any well-meaning but unnecessary clergymen or clowns (I fear both) from visiting me before, during and after the draining procedure.
I knew that, like a dialed-in ballplayer with the game on the line and fastballs whizzing past my head, I was calmer than my better half, who was on the sidelines like a nervous coach. I slept the night before; she did not. She in fact had to be at the hospital so long for this grueling operation that she was able to squeeze in (literally) a drop-in mammogram between watching some chick flicks (she loves Sandra Bullock; I am allergic) on a portable DVD player I bought her on this, the day before our ninth anniversary. Last time I had this surgery it was on her birthday. Guess I’m an old romantic at heart.
But back to the brain. Or what is left of it.
I knew to burn my surgery-relaxation-music CDs—the one part of the operation I could control—so that the sneakster OR support crew, which would have me bolted down tighter than Gulliver by the Lilliputians, would not play my carefully sequenced tunes out of order. I also had some macabre fun this time, including on my playlist “Don’t Fear the Reaper,” “King of Pain” and “Comfortably Numb.”
Hello. Is there anybody in there?
Funny thing about phobias and control: I am not afraid of things I can’t control. Air travel, brain surgery, roller coasters, earthquakes, PMS, the cost of gas—can’t do much about those things. What I fear is stuff I can control: driving, walking too close to a bus or propane truck driven by someone in or out of rehab, mowing the lawn without severing a toe, keeping promises, maintaining my bowling average, eating in public without spilling down my shirt. When you are essentially welded into an OR table for the better part of a day with a catheter to remind you it’s a full-body experience, you might as well ride it out, ’cuz you ain’t flying the plane.
So I tend to be pretty calm when I am not in charge.
I knew that hospital food, like airline food, good garden hoses and R.E.M.’s last two albums, seems to be devolving in quality rather than evolving.
I knew that TV—any TV—was pretty good on morphine. But even with a fresh quarter-sized hole in my noggin to match the 2004 version, and a nice drip-line going, I had the forethought to switch the channel when I saw anything with “Idol” or “America’s Top/Next” in the title.
I knew that even though the reward for surviving brain surgery is you get your own room and nurse—a nice perk—I had so many wires sticking out of me in my one day in the brain/ICU ward that I looked like the back of a Best Buy display center. Wires were everywhere, including the new one on the left side of my brain that snakes around my ear, down my neck and into the new, five-year battery/man-boob in my upper chest.
Here’s what I did not know or what is new about DBS surgery at my hospital:
Maybe I caught them on a bad week, but the quality of nursing is all over the lot. A qualifier: The hospital I was in is probably in the upper echelon as far as hospitals go, certainly better than what you’d find in second- and third-world countries, perhaps even certain military hospitals in the United States, especially one whose name rhymes with Smalter Breed. One nurse at my hospital is a personal friend, a lovely, caring woman who went out of her way to visit me in the recovery room. (Tara, you rock.)
But something about the nursing in general seemed … off, like rushing bush leaguers to the majors in some cases, holding on to bitter has-beens in others. In my case, the nursing ranged from clueless to careless to cynical and shot, to compassionate and knowledgeable. Examples: I had an IV inserted on the wrong vein on the wrong arm, only to have my most excellent OR nurse practitioner fix it just before my operation. One nurse in the brain ward had no idea how to handle a patient with my increasingly common type of surgery (apparently in my morphine slumber, I failed to keep my head propped, a big no-no. A more seasoned, caring nurse on the next shift promptly propped me up while applying ice—DBS 101.)
The quixotic thing about nursing: It pays well, at least pretty well from a writer’s vantage point (what doesn’t, ahem). Still, there are tons of openings for anyone who keeps his or her nose and drip-lines clean. A lot of nursing seems automated now (blood pressure, pulse and temperature taking; the automated hourly squeeze of the blood-pressure cuff, incidentally, is like sleeping with an amorous python). So the barriers to entry to basic nursing seem not so daunting. Maybe not. Maybe the automated parts were the fun parts.
Perhaps my expectations were too high and I was the problem. But most of the nurses I was around—and I was on both the high and low levels of care during my week at the hospital—seemed to view their jobs as, well, jobs, though most loved showing pictures of their children on the flipside of their ID tags, which perhaps best explained the having-to-work part. Nurses, I decided, are the prison guards of the medical world, caught in a vice between demanding doctors, patients and their own supervisors. And regardless of pay and benefits, a thankless job is a thankless job.
How do I know this? Well, even though it was brain surgery, I was less self-absorbed (read: scared) this time around, and the nurses, especially at night when there is seemingly less to do, bitch and gossip and bitch some more. And they don’t seem to mind if patients hear it. The supply of patients is endless. We can check out any time … they can never leave.
“Let’s face it,” I heard one nurse say during down or loaf time, “we’re only doing this for the money.”
“Hell yes,” I heard another say. “And I am tired of cleaning up poop.”
Added another: “I cleaned up so much poop yesterday, you would have thought I went to poop school rather than nursing school.”
In a way the hospital is poop school. Poop is kind of what drives who stays and who goes home.
From the moment you check in your bowels become center stage, going from No. 2 to No. 1, unseating pee. Though in fairness to pee, they do keep an eye on how much, the clarity, etc.
But not like poop. What comes or doesn’t come out of your rear seemingly is more trustworthy than what comes out of your mouth. If you verbalize your condition, if you want out like I did a day earlier than scheduled because the smell of hospitals alone is unnerving, let alone the noise, you better have the poop to back it up.
I nevertheless was quite guarded about my poop. Hard to do when you check in and the first nurse you meet asks you in front of your wife (with whom you do not share a bathroom—we have his and hers, the key to a solid marriage—and who knows as little about my regularity as I do about hers): “How often do you have a bowel movement?”
“Um … used to be about every day and twice on Sundays. Now, with Parkinson’s, about every three days. Constipation is part of the fun of this disease, unless I eat a box of Cream of Wheat, box included.”
“Really?” the check-in nurse gasps. “Wow. I have to go every day.”
(Thanks for sharing, lady. Can I see those kid pictures again?)
In the brain/ICU ward, the toilet is bedside, out in the open, not unlike prison potties and really weird bathrooms I once saw in Moscow’s Gorky Park. After my wife slipped me some contraband Taco Bell (amid hospital food, a Burrito Supreme is a wonderful thing), I felt confident that my ticket out the door had arrived. Just to make sure, I also had a Taco Supreme, an Enchirito and a caffeinated soda. They wanted poop, and I planned to deliver—to drop the proverbial chalupa and start packing my suitcase.
I crawled out of my bed with my wires, IV tree and God knows what else hanging off of me and awkwardly perched on the stainless steel hospital loo.
False alarm. No go. But, hey, you can’t blame your bowels for a little stage fright when you are expected to drop a deuce in plain view of a nurse who kind of resembles your fourth-grade teacher.
As my vitals and “wounds,” as they call the miasma of drills, scalpels and head-cage pins burrowing into my head, became more manageable, I was wheeled to the first floor to convalesce with the rest of the mere mortals. “You may have parts of my brain,” I yelled jokingly as I was wheeled out of the brain ward, “but I still have my heart—and poop!”
I was deposited in a small room with three other men—loud snorers, all—who were underwhelmed to see me. Can’t blame ’em: You put four seriously ill post-op guys in a small room with no privacy and daytime TV, and it ain’t exactly boys’ night out.
My 6-foot-4-inch body was squeezed into a 6-foot bed. And because one Parkinson’s/DBS patient once snuck out of bed and broke a leg, my bed had a bed alarm, which I figured was outlawed by the Geneva Conventions or Amnesty International or something. Not just any old bed alarm, mind you, but a blaring box from hell that played a sort of ring tone-hip-hoppish “Mary Had a Little Lamb” at ear-splitting volumes any time I tried to get out of my undersized bed—given its childish setup it might as well have been shaped like a race car—to do the deed that was going to get me out of the hospital.
By this time, I really wanted to get up and go! So I took drastic measures: Milk Duds and two large Starbucks coffees delivered by various co-conspirators. I defused the bed alarm. I wobbled into the bathroom and shut the door.
I knew my chances were decent if only because the only thing private in a four-man room is the bathroom.
After the second cup of coffee, the 11th Milk Dud and some jumping up and down in the private potty, I delivered the goods, though the nurse seemed a bit disappointed that I did not show her the evidence, à la one of my roommates, who had to summon a nurse every time he went to display the unflushed treasure. Sorry, I guess I have this odd habit of flushing.
But I did manage to spill a few Milk Duds on the sheets.
“Now do you believe me?” I quipped. “I even muddied the bed.”
“OK, now let’s see you walk.”
“Hell, I will run if that gets me out.”
“I’ll get your paperwork.”
Thank God for Milk Duds and co-conspirators.