(This is a sample chapter of a work in progress in which I document my experience in a clinical trial, looking for new and better treatments for people suffering from Parkinson's Disease.)
JUNE 7, 2007
One down, two to go.
My head hurts.
I look like the Peter Boyle character in “Young Frankenstein” – but not nearly so dapper or charming.
It hurts to raise my eyebrows.
The bone markers are in – the anchors that Dr. Konrad will use to attach the stereotactic platform he’ll use to guide the probes and electrodes during my brain surgery June 13. And despite the bitching you might detect in the above paragraphs, the whole thing went quite smoothly… once I got through the security gate at BWI airport, anyway.
“That bag’s too big,” the TSA agent snapped. I looked at the small, rolling suitcase by my side. Borrowed from my stepson – this suitcase was purchased for the sole purpose of serving as carry-on luggage. I opened my mouth to inform the agent of that fact when he pointed at the plastic bag holding my toothpaste, deodorant, etc. that I removed from the bag so that the TSA could see my liquid toiletries and satisfy themselves that I was not going to concoct a toothpaste and deodorant bomb onboard the aircraft.
“It’s supposed to be a QUART bag,” he hissed. (I swear… he HISSED!) “That’s a GALLON bag.”
“I’ll be damned,” I said, contemplating whether or not they’d have to clear the terminal because of this breach of security. I mean, you could clearly see the toothpaste, the deodorant, the little bottle of liquid soap, the tiny bottle of mouthwash – all purchased to comply with the idiotic new security requirements designed to prevent Osama bin Laden and his legion of evildoers from blowing airplanes out of the sky with commercially-available toiletries.
“I thought the purpose was to make the items visible to the inspector,” I said. “I didn’t know the size of the bag was the issue.”
Earning every cent of his $8 per hour salary, the TSA agent pointed at a sign. “It says right there… a quart-sized clear plastic bag. That bag is a gallon-sized bag.”
I braced myself, anticipating at any moment to find myself being pushed down to the floor, my face pressed into the carpet as this diligent guardian of the airport rifled through my bag to see what other dangerous things I might be carrying in as of yet unseen clear plastic bags of unauthorized volume.
“Is there any way around this, or do you have to confiscate the bag?” I asked. The agent considered for a moment.
“Well, if that’s the only size bag you have,” he said, apparently deciding that my gallon-sized plastic freezer bag of toiletries was not a clear and present danger to America and its freedom. He gave me a dismissive wave and I was allowed to proceed to the x-ray conveyor belt. I pulled off my shoes, took off my hat, stripped off my belt, emptied my pockets, and placed everything into the grey plastic bin along with the freshly-pardoned plastic bag. With my suitcase and the bin on the conveyor, I showed another TSA agent my boarding pass and walked through the metal detector. No beeps. Good.
Moments later I sat in a nearby chair, put my shoes and belt back on, put the plastic bag of stuff back into the suitcase, refilled my pockets, and made my way to the gate.
Southwest Airlines has an interesting way of boarding passengers. No assigned seats. When you get your boarding pass, you are assigned a letter – A, B or C. At each Southwest gate, there are three gates marked accordingly, A, B and C. When I got to my gate, there were a few people standing in the “A” row. Most were seated in nearby chairs. I found an empty chair near the head of the “A” row – I had an “A” boarding pass, after all – and sat down.
“Do you have an ‘A’ boarding pass,” a fellow passenger asked. I told him I did.
“The line begins back there,” he said, pointing to a group of people sitting about 10 yards away. There were a bunch of empty seats in this area. But apparently this gent had appointed himself “row captain”. So I shrugged and made my way towards the back of the row.
As it turned out, folks sat pretty much wherever they wanted to sit as we awaited boarding. “A’s” sat with “B’s” and even the otherwise untouchable “C’s” were allowed to mingle among their betters without being ostracized. But once the gate personnel started loading the pre-boarding passengers… the elderly in wheelchairs, folks with tiny kids… it was every man for himself as we queued into our respective lines.
I got lucky. When I got on the plane there was a front, aisle seat. Being a fat man, I like the aisle. I can lean into the aisle and give my center-seat mate a little more breathing room. I am a humanitarian and make no bones about it.
The flight to Nashville took about 90 minutes and was without event – except for some rocky turbulence as we dropped through thunderstorms on our descent into the Music City. I was first off the plane. A short cab ride later, I was once again at the entrance to Medical Center North at Vanderbilt University Medical Center.
The door was locked.
I pondered this for a moment, recalling that my first visit to the General Clinical Research Center at Vandy also started on a Sunday, and the door was open then. I walked to the side door along 21st Street. Also locked.
Thank goodness for technology. I pulled out my trusty Treo, did a web search and found the phone number for the desk at the GCRC. A few moments a later a young nurse named Ben opened the door and let me in. I asked why the door was locked.
“It’s Sunday,” he said.
Ben took me to my room where I stashed my gear, turned on the TV, made myself comfortable and waited for dinner which arrived with its usual punctuality. You can almost set your watch by the meal times at the GCRC… breakfast at 8, lunch at 12, dinner at 5.
Monday morning, I noticed something different about breakfast. “Lump o’ Egg” no longer had that “rubbery” taste. In fact, it was in a different kind of container. I felt a brief, unreasonable sensation of pride believing that my blogging on the subject might have led to this improvement in the bill of fare. They’re my delusions, and I cling to them fiercely.
The only official item on the agenda for Monday was the pre-op anesthesia evaluation. It was a relatively standard affair – for obvious reasons, they want to make sure the patient is likely to survive the application of anesthesia. This involves an EKG, answering questions about one’s medical history, a chest x-ray and blood tests. The very nice nurse practitioner who interviewed me cleared me for the procedure, but asked that I provide her with a copy of a cardiac stress test I had in 2006 (or was it 2005) before the final procedure on June 25. This struck me as rather odd… I would be having surgery in less than 24 hours, and if I were likely to be killed by the anesthesia on the 25th, I was just as likely to die from it sooner rather than later. But I agreed to find the report and send it
At 6:45 Tuesday morning I made my way to the radiology clinic at the main hospital. After filling out more forms, I was ushered back to the preparation/recovery room. After getting into a gown and lying down on the gurney, a gent from the MRI department ran a tape measure over my mid section.
“He’s right on the border line,” he told one of the techs. “60 inches… that’s right at the limit.” This meant that I would likely not fit into the MRI tube without being stuffed into it like cream cheese into a cannoli.
“We’d have to squeeze your arms into your chest, and that would restrict your breathing… and we won’t do that,” the tech said.
“Well, I hope I haven’t come all the way down here for nothing,” I whined, wondering if this was the end of my participation in the clinical trial. I could visualize my patient file, with the word “Closed” stamped on it in bold red letters with the notation “Too Fat!” written below the stamp.
“No, Dr. Konrad says he has some old MRIs of you he can use,” the tech said.
“We’ll get the CT and go from there.”
Bernard, the tech who checked me into the radiology department, came back and started an IV in my right hand. “This is my least favorite part of surgery,” I said.
“We’d worry if it was your favorite part,” he said without a smile.
Then came the procession of professionals to my little gurney. Associates of Dr. Konrad (“We’ve been told what a HOOT you are,” one said.), members of the anesthesia department, and the folks who would drill the bone markers in my skull all dropped by to say howdy.
Then they rolled my gurney into the CT lab. I slid from the gurney onto the CT table and the professionals gathered about me. Everyone was so busy. I almost felt guilty just laying there doing nothing. The two anesthesia ladies discussed which of them would stand on my left and which would stand on my right, and I got the feeling that the younger of the two was a trainee. For a fleeting moment it occurred to me that all I had to say was “I’d like to stop now” and then everything would come to a screeching halt, I could get up off the table and go home. I decided against it.
The more senior of the anesthesia ladies told me she was just about to inject something into my IV. “This burns sometimes,” she said… and it did, but just a little. Her junior put an oxygen mask over my nose and mouth.
“You’re going to feel very sleepy in a second,” the senior one said.
I concentrated. I focused. I wanted to actually FEEL myself drift off to anesthesia-land. I’ve never been able to catch the feeling before.
Nor would I this time.
A moment later I was back in the recovery room.
“Are they done?” I asked.
“Yup,” Bernard said.
“What time is it?”
“About 8:30,” Bernard said. The whole thing took less than an hour. I raised a hand to my forehead and gently explored the region. I was expecting a puncture mark in the middle-upper part of my forehead, since the Vanderbilt handbook on the subject indicated that the bone markers are installed in a diamond-like pattern – one in front, one in back, one on each side of the head.
I had two bumps on my forehead and two in the back… not a diamond… a rectangle.
“Don’t touch those,” Bernard said. “Your fingers are dirty.”
“I washed them this morning,” I said with a pout.
I asked for – and got -- three cups of coffee, and they monitored my blood pressure for the next hour before turning me loose. I felt fine! In addition to the general anesthesia, they used local anesthetic to numb the top of my head. For the first time in my life – despite taunts to the contrary over the span of my entire existence – for the moment I actually was a “numbskull.”
After a wheelchair ride back to the GCRC, I called Gail and told her I had survived the procedure. She seemed glad to hear this. I took pictures of myself with the Treo and e-mailed them to her. “Oh, my!” she said as she saw the first one.
I was beautiful. But I wasn’t done yet.
My nurse-of-the-day came into the room and said radiology called. They were sending someone to take me back down for an MRI.
“I thought I was too fat,” I said.
“They’re going to try it anyway,” she said with a shrug.
Moments later, two young ladies arrived with a gurney. “Where’s your hospital gown?” one asked, no doubt puzzled by the fact that I was wearing a black t-shirt, green shorts and sneakers.
“Don’t have one,” I said. “And this is silly. I can walk down there.”
“No, this is procedure,” she said.
“Fine,” I said as I hopped onto the rolling bed. I pulled the sheet up over my face and said, “Let’s go.”
“You’re gonna scare everyone,” my driver said, pulling the sheet down. “Stop that.”
We went back the way we came… through the tunnel separating the main hospital from the Medical Center North. There in the MRI lab was the guy from earlier – the one with the tape measure.
“I thought I was too fat,” I said.
“So did I,” he said, “but we’re gonna try anyway.”
He rolled the gurney into the MRI room and I got on the table. He asked me to lay down with the back of my head in the coil they use to get better pictures of the brain. My head didn’t fit. It’s a large head. What can I say?
I sat up so they could change the coil, and noticed something trickling into my right ear.
“How did I get water on me?” I wondered as I wiped my ear. My right hand came back with my index and middle fingers soaked in blood.
“Fellas, I seem to be bleeding here,” I said as calmly as a guy with a bleeding head can say.” Turns out I bumped one of my new scars on the skull coil. As it was still numb from anesthesia, I didn’t feel it.
They put a gauze and tape over the incision and tried another coil. This one was even smaller… it was like trying to put 10 pounds of cheddar into a box meant for five pounds. They decided to go with a larger coil. This one fit tightly, like a football helmet, but it did the trick.
“All right,” the tech said, “we’re going to strap your arms to your side and slide you into the tube and see if we can get you in there. Pull your arms in as tight as you can.”
I did as directed and they slid me into the tube. My arms and elbows pressed into my rib cage, but they were able to get my head where they needed it. After nearly a half hour they pulled me out of the tube, injected me with a contrast agent, and stuffed me back inside. Another 12 minutes and they were done. I was treated to another gurney ride back to my room, and never was I so glad to see a hospital lunch as I was when they brought it in to me.
After lunch, I relaxed and waited for the local anesthetic in my head to begin wearing off. It did. And that’s when I noticed how much the entire scalp is involved in something as routine as the movement of an eyebrow. Each motion of expression was met with pain. It wasn’t so much a “headache” as it was a feeling of getting the crap beaten out of you by someone with brass knuckles. My eyes felt swollen. My sinuses ached. Tylenol took the edge off. But there was no way to lay comfortably. I was able to sleep that night, but woke up frequently – every time I moved my head.
By the next morning it felt a little better. By the time I got on the plane to come home, it was even better. I had the same seat on the flight home as I did on the flight to Nashville – but now I was paranoid about passengers swinging their carry-on luggage and smacking me on the head with it. When Gail met me at the airport, I was paranoid about banging my head on the car door as I sat down. It’s amazing how much you think about and care about a previously ignored body part when it aches and throbs with each and every movement.
My sense of humor, however, was not affected. Gail and I stopped at a grocery store on the way home and I noticed an elderly woman pushing a cart towards her car. “Howzabout I take off my hat and stagger towards that lady – Frankenstein-like – and demand that she give me my brain back?” I asked. Gail shook her head.
“Yes, that’s a good idea. Why don’t you do that? I’ll wait here.”
She knows me too well.
It felt good to be home. Oddly, neither Shiloh nor Raven seemed interested enough to jump into my lap and sniff what I feared might be the enticing scent of fresh blood on my bean. Gail had purchased one of those foam wedge pillows, and that made it somewhat easier to sleep through the night.
And now, the day after, as I sit here at my desk wearing a “Thomspon Cigar Company” hat to protect my co-workers from having to look at my scarred and stapled skull – unless they ask first – the pain isn’t much more than a dull ache.
A week from right now will be the morning after the actual electrode implantation. With two 4-inch incisions and two dime-sized holes in my skull, I imagine that will feel a bit tender as well.
But that’s another battle for another day. This one’s behind me. Like I said…
Two to go.
Causes Bill Schmalfeldt Supports
Parkinson's Disease Research
National Parkinson's Foundation
The Michael J. Fox Foundation