After a review of all the tests, my neurologist informed me that not only was the tumor still there, there were now traces of it in my spinal fluid. That meant chemo. Next stop was a trip to see a very wicked witch who lived in the top of a tower, surrounded by a gaggle of inept harpies. (I'm not sure what you call a bunch of harpies so we'll just go with "gaggle" for now.)
I got there and did the usual -- name, birthday, filling out form after form. Did I have surgery? When? Did I have a family history of a thousand different illnesses? Did I have a pacemaker? Did I have change for a twenty? And so on. One would think that hospitals would share this information and keep it in a database, but one would be wrong. I answered this stuff every time I saw a new doctor.
I got ushered into a waiting room. In came two nurses. One old, one young, both stupid. The twentysomething kicked things off with "why are you here?" followed up with "have you seen a doctor?" and "are you allergic to penicillin?" I had already answered these and many, many more questions on the forms she was holding in her hand. After what seemed like an eternity, they left and another nurse came in. A black lady. Turned out Black Lady was the only empathetic, competent one in the office -- she would go on to interpret the strange questions and odd behavior for the rest of our visit. "She's new," Black Lady said of the young nurse. "No shit," I answered. Normally I have more patience for this kind of thing. We're all new at some point. But I don't think that Rare Brain Tumor is the time to let the newbie get her sea legs.
The best was yet to come. Finally, in strode The Wicked Bitch of the Midwest, my oncologist-to-be. A thin woman in her early sixties with the bedside manner of Joseph Mengele, she got right to the point, going over what I had and letting me know why chemo was the way to go. Like many evildoers, at first she made sense. Having endured the idiocy that had been displayed up to this point, my wife and let out a sigh of relief.
Then it got weird. She didn't ask me how I felt about things, if I had questions or how comfortable I was about the proposed treatment, the details of which we had yet to hear. Up to this point, all of my doctors had treated me as if I had a voice in my treatment; that I was part of the team. Not her. As far as she was concerned, it was all predetermined. We were just nailing down the details at this point. She acted as if someone had already explained all of this -- the logistics of treatment, possible side effects, what to expect, etc. -- prior to our visit.
She'd go in and out of the room for unexplained reasons -- presumably to look things up? Black Lady would come in intermittently to reassure us. The topper was when The Wicked Witch popped her head in and said, "oh, there's a good chance you'll end up sterile, so you might want to bank some sperm." How's that for an off-the-cuff remark?
My wife and I looked at each other with a mix of fear, anger and disbelief. What. The. Fuck?
The Wicked Witch came back and ran down the course of treatment, casually rattling off the chemo drugs they'd be pumping into me. Black Lady then took us on a tour of the facility where I'd be spending my time. A lot of time. At least three hours a day, every day, for weeks. I'd get weekends off, of course. It was an empty room of old-looking pink recliners lined up in a row, with the windows behind them. There were two TVs mounted on the wall at either end of the room. "Depressing" doesn't come close.
Next step for me was to get a port, a little device they implant in your chest that's continually hooked up to a vein. It makes it easier to get chemo and other treatments intravenously. They just attach the IV and away you go, just like gassing up the car. They'd already made an appointment for me.
Holy shit.
Thursday, February 24, 2011
Wednesday, February 16, 2011
It's Alive! Alive!
Next up was an MRI to check my progress. They ushered me in and I got my cotton gown on and all that. First step was a blood draw. I got taken back into a room with many bays, all seperated by thin curtains.
So I'm sitting there waiting for the nurse to get whatever she needed to get, and I hear a nurse, mom and little girl in the bay next to me. I never saw them, but I'm guessing the girl was probably nine. She had to have an MRI and was clearly scared. I could hear the terror in her voice as she struggled not to cry. It was heartbreaking. I seriously considered going over there and telling her it wasn't a big deal; that I'd been through much worse and I was fine. Hey, just look at me! Here I am! It won't be a big deal!
I should add that at this point I had six big-ass shiny staples on the top of my head, keeping things together.
I reconsidered. If some strange man with mangy hair and a row of industrial staples in his head comes into your room when you're already shitting bricks, a well-intentioned word of assurance probably isn't going to mean all that much. I'd be thinking "Holy shit! What's next for me??" I stayed put and just tried to send her good vibes.
So I'm sitting there waiting for the nurse to get whatever she needed to get, and I hear a nurse, mom and little girl in the bay next to me. I never saw them, but I'm guessing the girl was probably nine. She had to have an MRI and was clearly scared. I could hear the terror in her voice as she struggled not to cry. It was heartbreaking. I seriously considered going over there and telling her it wasn't a big deal; that I'd been through much worse and I was fine. Hey, just look at me! Here I am! It won't be a big deal!
I should add that at this point I had six big-ass shiny staples on the top of my head, keeping things together.
I reconsidered. If some strange man with mangy hair and a row of industrial staples in his head comes into your room when you're already shitting bricks, a well-intentioned word of assurance probably isn't going to mean all that much. I'd be thinking "Holy shit! What's next for me??" I stayed put and just tried to send her good vibes.
Wednesday, February 9, 2011
Mah Momma's A Good Kisser
A few days after the surgery they asked me to come back in to see how I was doing and get a few tests done.
First was the CT scan. It wasn't all that different from an MRI except for the fact that I had to drink this thick Slurpee-like concoction about a half hour before I went in. No biggie. I brought a book and was prepared to wait it out. Only problem was the Clampett family.
An obese, soda-chugging family of six, they all accompanied Grandma to the hospital for her CT scan. Every thought was spoken aloud, often simultaneously and at top volume. In the all-too-short time we spent together, I learned that Mr. Clampett was suprised to learn of a new $3.99 deal at Long John Silvers ("THAT'S A GOOD PRICE FOR WHAT YOU GET!"), that Dolly, the twentysomething with inappropriately tight sweatpants got to taste flavored coffee for the first time ("HEY DAD THEY HAVE FLAVORED COFFEE. I MIGHT TRY IT. IT'S GOOD!") and other touching, tender moments people feel compelled to share on Facebook.
At first it was mildly entertaining, but the charm wore off quick. I kept looking around to see if anyone else was annoyed by this tsunami of stupidity that had descended upon the waiting room, but everyone else acted as if it was just another Thursday.
I chalked my profound irritation up to the steroids I was still taking and soldiered on. I must've read that same sentence in my book ten times if I read it once. Mercifully, I got called back for my test, which turned out fine.
First was the CT scan. It wasn't all that different from an MRI except for the fact that I had to drink this thick Slurpee-like concoction about a half hour before I went in. No biggie. I brought a book and was prepared to wait it out. Only problem was the Clampett family.
An obese, soda-chugging family of six, they all accompanied Grandma to the hospital for her CT scan. Every thought was spoken aloud, often simultaneously and at top volume. In the all-too-short time we spent together, I learned that Mr. Clampett was suprised to learn of a new $3.99 deal at Long John Silvers ("THAT'S A GOOD PRICE FOR WHAT YOU GET!"), that Dolly, the twentysomething with inappropriately tight sweatpants got to taste flavored coffee for the first time ("HEY DAD THEY HAVE FLAVORED COFFEE. I MIGHT TRY IT. IT'S GOOD!") and other touching, tender moments people feel compelled to share on Facebook.
At first it was mildly entertaining, but the charm wore off quick. I kept looking around to see if anyone else was annoyed by this tsunami of stupidity that had descended upon the waiting room, but everyone else acted as if it was just another Thursday.
I chalked my profound irritation up to the steroids I was still taking and soldiered on. I must've read that same sentence in my book ten times if I read it once. Mercifully, I got called back for my test, which turned out fine.
Tuesday, February 1, 2011
The B Team
While hospitals do offer round-the-clock care, it sure isn't consistent. I had great care across the board during the day. But after 5pm you get the B team, and that's being generous. You'd think that they'd mix the newbies in with the veteran nurses to help them get a grasp on things but you'd be wrong. I saw a number of nurses that night, and the one who knew what she was doing left around 11pm. After that you're in the hands of rookies and idiots.
Morning couldn't come soon enough. Once it did, the doctor came in to see me. He looked at my scar, which was held shut with some serious metal staples. I looked a little Frankenstein-y. He asked how I was doing and had me do a few exercises/movements to make sure everything was working properly and sent me on my way.
I hadn't done a whole lot of moving in the past 24 hours, so it was a little strange getting wheeled back into the world. The sun seemed really bright. It was surreal seeing all the people walking around. I got in the care and went home.
Morning couldn't come soon enough. Once it did, the doctor came in to see me. He looked at my scar, which was held shut with some serious metal staples. I looked a little Frankenstein-y. He asked how I was doing and had me do a few exercises/movements to make sure everything was working properly and sent me on my way.
I hadn't done a whole lot of moving in the past 24 hours, so it was a little strange getting wheeled back into the world. The sun seemed really bright. It was surreal seeing all the people walking around. I got in the care and went home.
Wednesday, January 26, 2011
The Douche Crew
My wife figured out how to extend the lounge chair into a mini bed and we settled in for the night. The irony of all this is that they come in every twenty minutes or so to make sure that you're still alive and/or give you another pill. Still, we managed to get a little sleep.
Then the weather turned shitty. The National Weather Service, who had done a crap job the week before in regard to issuing a severe storm warning that resulted in some serious property loss, made up for it and overcompensated by issuing a tornado warning. A tornado warning means that one's been sighted and you should find cover immediately. If you live in the Midwest, all this means is that everyone should leave the house as soon as possible and stand in the middle of the street to watch the storm roll in with the neighbors.
Unless you're in the hospital. Their policy was to get everyone away from the windows and keep them there until the Weather Service cancelled the warning, which could and often does last for hours. The nurses and orderlies dutifully herded and wheeled everyone into an interior hallway. It looked like a M*A*S*H* unit -- IVs all over the place, people with all sorts of bandages, beeping machines and beds lined the hallway. I was doing okay enough to walk, but it was still tremendously uncomfortable.
The cherry on the sundae was the three very loud, very dumb frat boys who talked about stupid shit the entire time. I didn't expect a dissertation on the ramifications of Voltaire's Candide but sweet Christ were they trying. And since one of them worked there, we couldn't really say anything. All I could do was watch the TV as the menacing green blob slowly moved to the east and we were finally allowed to go back to our rooms. It probably lasted a couple of hours, but Dane Cook and Friends made it seem like an eternity.
Then the weather turned shitty. The National Weather Service, who had done a crap job the week before in regard to issuing a severe storm warning that resulted in some serious property loss, made up for it and overcompensated by issuing a tornado warning. A tornado warning means that one's been sighted and you should find cover immediately. If you live in the Midwest, all this means is that everyone should leave the house as soon as possible and stand in the middle of the street to watch the storm roll in with the neighbors.
Unless you're in the hospital. Their policy was to get everyone away from the windows and keep them there until the Weather Service cancelled the warning, which could and often does last for hours. The nurses and orderlies dutifully herded and wheeled everyone into an interior hallway. It looked like a M*A*S*H* unit -- IVs all over the place, people with all sorts of bandages, beeping machines and beds lined the hallway. I was doing okay enough to walk, but it was still tremendously uncomfortable.
The cherry on the sundae was the three very loud, very dumb frat boys who talked about stupid shit the entire time. I didn't expect a dissertation on the ramifications of Voltaire's Candide but sweet Christ were they trying. And since one of them worked there, we couldn't really say anything. All I could do was watch the TV as the menacing green blob slowly moved to the east and we were finally allowed to go back to our rooms. It probably lasted a couple of hours, but Dane Cook and Friends made it seem like an eternity.
Tuesday, January 18, 2011
J-E-L-L-O
I woke up in my room and the first person I saw was my wife. What a warm relief that was. She was smiling the brightest, warmest smile and things were instantly better. Words truly fail me. It was such a comfort to see her as soon as I came to.
We spoke for a bit and I talked to my folks. Though my mom did her best to hide it, I knew she'd been worried sick. I'm sure it was a relief for her to see that I'd not only made it through but had all my faculties. Had I been thinking, I would've yelled something in Spanish or in a made-up language, but the anaesthesia had the upper hand. The nurses came in to make sure I was okay and to get me started on what would be a night full of IV drips, injections and pills.
My head was bandaged up but I could see with both eyes. One of the first things I wanted to see was a hospital menu. It was mid-afternoon and I hadn't eaten since the night before. I was ravenous. I probably would have even eaten a slice of Sandra Lee's Kwanzaa Cake and asked for seconds. The nurse brought me a menu and suggested I take it easy since anaesthesia can make some people nauseous. I got spaghetti and meatballs and some red Jell-O.
The Jell-O arrived first. A lot of people make fun of Jell-O, saying it's strictly for honkies, Jell-O shots and after-funeral lunches. And they're right. But it's also pretty goddamn delicious when you haven't eaten in sixteen hours.
After that I talked briefly with one of our former customers from our bakery for a bit and just rested. I was happy to learn that I'd be getting a morphine drip. I, like most Americans, had heard great things about morphine and was looking forward to it and all of its wondrous narcotic properties. Sadly, all it did was dull the pain.
Which was surprisingly minimal. You'd think that getting your head cut open would make the top three on the Holy Shit That Hurts list, but I was more sore from the screws in the halo than the divot in my skull.
After the spaghetti (which also tasted as if Jesus Himself had made it) I rested and tried not to move too much so I wouldn't disturb the IV. My bed was almost supernaturally comfortable. Though the matress was thin, it had these pumps that'd continually adjust to support your body in whatever position you were in. I could also control the TV (I think -- morphine's a hell of a drug. At one point I'm sure I thought I could control Prince Charles and/or the weather in Peru) from my bed. It was pretty sweet. If it wasn't for the whole sickness/surgery thing, I'd get one for home.
We spoke for a bit and I talked to my folks. Though my mom did her best to hide it, I knew she'd been worried sick. I'm sure it was a relief for her to see that I'd not only made it through but had all my faculties. Had I been thinking, I would've yelled something in Spanish or in a made-up language, but the anaesthesia had the upper hand. The nurses came in to make sure I was okay and to get me started on what would be a night full of IV drips, injections and pills.
My head was bandaged up but I could see with both eyes. One of the first things I wanted to see was a hospital menu. It was mid-afternoon and I hadn't eaten since the night before. I was ravenous. I probably would have even eaten a slice of Sandra Lee's Kwanzaa Cake and asked for seconds. The nurse brought me a menu and suggested I take it easy since anaesthesia can make some people nauseous. I got spaghetti and meatballs and some red Jell-O.
The Jell-O arrived first. A lot of people make fun of Jell-O, saying it's strictly for honkies, Jell-O shots and after-funeral lunches. And they're right. But it's also pretty goddamn delicious when you haven't eaten in sixteen hours.
After that I talked briefly with one of our former customers from our bakery for a bit and just rested. I was happy to learn that I'd be getting a morphine drip. I, like most Americans, had heard great things about morphine and was looking forward to it and all of its wondrous narcotic properties. Sadly, all it did was dull the pain.
Which was surprisingly minimal. You'd think that getting your head cut open would make the top three on the Holy Shit That Hurts list, but I was more sore from the screws in the halo than the divot in my skull.
After the spaghetti (which also tasted as if Jesus Himself had made it) I rested and tried not to move too much so I wouldn't disturb the IV. My bed was almost supernaturally comfortable. Though the matress was thin, it had these pumps that'd continually adjust to support your body in whatever position you were in. I could also control the TV (I think -- morphine's a hell of a drug. At one point I'm sure I thought I could control Prince Charles and/or the weather in Peru) from my bed. It was pretty sweet. If it wasn't for the whole sickness/surgery thing, I'd get one for home.
Tuesday, January 11, 2011
Watch What Happens When I Press...Here!
The operating room didn't look like I thought it would. The predominant colors were white and gray, but I was expecting something...brighter, I guess. There were about six other people in the room that I could see, and all of them had a particular job they were getting ready for. The anaethesiologist and his student assistant gave me a shot to get things moving.
One thing you don't hear about very often is that you're going to be awake during the surgery. This is to make sure they don't do something that'll turn you into a country music fan or vote for Sarah Palin. So while I was getting anaesthesia, I wouldn't be out the whole time. They could and would be giving me something to make me forget about it though. So I had that going for me.
I got all warm and calm and they put a little tent up to cover my eyes. Probably for the best. There was classical music playing somewhere and we were off to the races.
They kept asking me questions. First, to make sure I was cognizant and second to check the progress of the anaesthesia. The questions were pretty basic -- stuff like "what day is it?" and "what's your wife's name" as well as whether or not I felt anything. I felt calm through all of it.
Because of the drugs, my memory of the actual surgery is a little hazy. One thing I remember quite clearly is the sound of my skull being opened. It sounds pretty much like you'd expect -- kind of a wet crunch and a crack. It didn't scare me and I didn't freak out. They were talking to each other and doing their thing. I could've been at the beach as far as I was concerned. I just kept talking and answering questions. Hopefully the line of questioning was on the up and up. I probably would've sung like a canary on all sorts of topics and had no memory of them afterwards. You could learn a lot about someone.
It took some time to get to the tumor, but when he did I remember there being some comments. Stuff like, "Here's the first sample" and so on. They sent it to a pathologist. I remember thinking that the fucking pathologist better be in the goddamn room next door and not across town. I also remember wondering how it would be presented to him/her. Would it be in a jar? Raced across town in an Igloo cooler? In some guy's hand?
I don't know how long it took for him/her to check it out, but the doctor asked me if it'd be okay for them to get another sample of the tumor for future reference and so students could study it since it was so rare.
Well, since you have the hood up, why the hell not? I said sure. If it would prevent anyone else from having to go through this, I'm all for it.
At this point the doctor reiterated that I should tell him if I felt anything. I did. It felt as if there was a thick string connecting my ears and someone was plucking it. It didn't hurt and it didn't make me piss my pants or anything, but it's not something you'd really like to experience if you can help it.
I said "Hey!"
Things got real quiet.
The doctor calmly asked if I was alright. I replied that it was fine, but it felt as if someone was tugging on the aforementioned string. He took a deep breath and said "okay." Things progressed without incident.
I don't remember much after that, but I do remember being wheeled out of the operating room, thanking everyone for doing such a great job. I have no idea if it was polite and classy or more like Motley Crue leaving the stage after a concert. Probably the latter. "Thank you! Goodnight Tulsa!"
One thing you don't hear about very often is that you're going to be awake during the surgery. This is to make sure they don't do something that'll turn you into a country music fan or vote for Sarah Palin. So while I was getting anaesthesia, I wouldn't be out the whole time. They could and would be giving me something to make me forget about it though. So I had that going for me.
I got all warm and calm and they put a little tent up to cover my eyes. Probably for the best. There was classical music playing somewhere and we were off to the races.
They kept asking me questions. First, to make sure I was cognizant and second to check the progress of the anaesthesia. The questions were pretty basic -- stuff like "what day is it?" and "what's your wife's name" as well as whether or not I felt anything. I felt calm through all of it.
Because of the drugs, my memory of the actual surgery is a little hazy. One thing I remember quite clearly is the sound of my skull being opened. It sounds pretty much like you'd expect -- kind of a wet crunch and a crack. It didn't scare me and I didn't freak out. They were talking to each other and doing their thing. I could've been at the beach as far as I was concerned. I just kept talking and answering questions. Hopefully the line of questioning was on the up and up. I probably would've sung like a canary on all sorts of topics and had no memory of them afterwards. You could learn a lot about someone.
It took some time to get to the tumor, but when he did I remember there being some comments. Stuff like, "Here's the first sample" and so on. They sent it to a pathologist. I remember thinking that the fucking pathologist better be in the goddamn room next door and not across town. I also remember wondering how it would be presented to him/her. Would it be in a jar? Raced across town in an Igloo cooler? In some guy's hand?
I don't know how long it took for him/her to check it out, but the doctor asked me if it'd be okay for them to get another sample of the tumor for future reference and so students could study it since it was so rare.
Well, since you have the hood up, why the hell not? I said sure. If it would prevent anyone else from having to go through this, I'm all for it.
At this point the doctor reiterated that I should tell him if I felt anything. I did. It felt as if there was a thick string connecting my ears and someone was plucking it. It didn't hurt and it didn't make me piss my pants or anything, but it's not something you'd really like to experience if you can help it.
I said "Hey!"
Things got real quiet.
The doctor calmly asked if I was alright. I replied that it was fine, but it felt as if someone was tugging on the aforementioned string. He took a deep breath and said "okay." Things progressed without incident.
I don't remember much after that, but I do remember being wheeled out of the operating room, thanking everyone for doing such a great job. I have no idea if it was polite and classy or more like Motley Crue leaving the stage after a concert. Probably the latter. "Thank you! Goodnight Tulsa!"
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