Introduction
I haven’t won the Tour de France and I’m not even sure I could be competitive at the municipal bike rodeo, but I like to ride my bike anyway. Nobody sponsors me to do it, so it didn’t make headlines on October 10, 2006 when I was told I had cancer. Nothing against Lance – I enjoyed both his books on his experience with the disease and highly recommend them, but I had my own story to tell.
Some quick background for new readers… I’m a 42 year old who has never smoked and gave up drinking over 10 years ago. I’ve exercised inconsistently, yet regularly, in an effort to lose the 10 pounds that have nagged me over the last several years. I have an inexplicable crush on Crystal Bernard, but I’ve also been happily married for 9 years to a wife who doesn’t mind me watching an occasional Wings rerun on TV Land.
Preface
Back in January 2006 I was living in Dallas and driving back from a business luncheon when I felt an odd lump on the right side of my neck. I'm not a doctor but I'm pretty sure it was where something called lymph nodes were located, and something in my head told me it's not unusual for them to be swollen so I wasn't too alarmed. However, after a couple weeks the swelling hadn't subsided and I wasn't sick so I went to my family doctor for a quick once over. The doctor with his fancy medical degree knew for a fact that the swelling was where something called the lymph nodes were located and also was not alarmed. He called it "lymphadenopathy" which seems to be a fancy word for swollen lymph nodes that allowed him to charge $75 for feeling my neck. It was probably the result of an unknown, acute infection, so he gave me some antibiotics and told me to come back if it didn't resolve itself in four weeks since it could be something more serious, but it wasn't likely given my otherwise good health and medical history.
About eight weeks later the lump was still there, so I followed up with another doctor that my wife had just started working for. The new doc also didn't think it would be anything serious, but arranged for a CT scan of my neck just to make sure. Shortly after, her nurse called me and said the report indicated it was shotty nodes, again, simply a series of swollen lymph nodes usually in response to an infection. I was told to check back in six weeks if there was no improvement.
During this period we were in the process of selling our home and moving to the Chicago area where my wife would start medical school in the fall. That way I could get a more definitive diagnosis when she graduated in four years. We arrived in June, along with my shotty nodes, and I followed up with a new doctor sometime around July. I got him a copy of my medical records and the pathology report, which he pointed out actually suggested the lump in my neck was a branchial cleft cyst and should be referred to an ENT (ear/nose/throat doc). I got a referral, and the ENT agreed it was likely a branchial cleft cyst. It is usually harmless but can be prone to infection, so standard procedure is to have it removed. I made an appointment to do so in early October, and this is where my story begins.
The Neck Dissection
Vinny: Remember, Mom, I have my surgery tomorrow.
Mom: Right. Where are you having it?
Vinny: Elmhurst. You know where that is, right?
Mom: Yes, I think that’s where your grandma was. In fact, I think that’s where she died.
Vinny: (laughing) Thanks, that makes me feel better.
Mom: Oh, shit, I’m sorry. I didn’t mean it like that.
Admissions Witch: Have you had anything to eat or drink since midnight?
Vinny: No, ma’am.
Admissions Witch: When did you last eat?
Vinny: 11:45 p.m. – four fried chickens and a coke.
Admissions Witch: Anything since then?
Vinny: Nope
Admissions Witch: Take this form; take the gold elevators to the fourth floor.
Michelle, Coolest Nurse Ever: Can you tell me why you’re here today?
Vinny: I heard it was Ladies Night.
Michelle CNE: You were misinformed.
Vinny: So my ass is hanging out of this gown for nothing?
Michelle CNE: No, that’s just for our entertainment. Now why are you here?
Vinny: I suppose you can take this lump out of the right side of my neck.
Michelle CNE: It says here it’s the left side.
Vinny: I’m not paying for this if he takes anything out of the left side.
Michelle CNE: Let me call him and have that corrected.
Vinny: That would be swell.
Michelle CNE: OK, I have it corrected. I need you to sign the surgery consent form.
Vinny: (reading) So this gives him permission to slice my neck open.
Michelle CNE: Yes.
Vinny: Cool. The last guy that did that to me didn’t even ask.
Michelle CNE: Now sign the anesthesia consent form.
Vinny: (reading) This says I can die.
Michelle CNE: You won’t.
Vinny: (reading more) It says I might remember stuff about the operation.
Michelle CNE: Yeah, that would suck.
Vinny: Here ya’ go.
Michelle CNE: (starting IV) You have good veins.
Vinny: I bet you say that to all your patients.
Michelle CNE: Transport should be coming to get you soon – you doing OK?
Vinny: I could use a jelly donut.
Michelle, Worst Nurse Ever: No.
Transport Girl #1: Can you get up on this table for me?
Vinny: Can you stop looking at my ass?
Anesthesiologist: Have you had general before?
Vinny: Hell, yeah.
Anesthesiologist: Any problems?
Vinny: Hell, no.
Anesthesiologist: Let’s rock n’ roll.
Unidentified Masked Woman #1: We’re going to give you a sedative……
Vinny: Zzzzzzzzzz…..
Vinny: Hey, recovery nurse lady.
Recovery Nurse Lady: How’s your pain?
Vinny: Got any Demerol?
Recovery Nurse Lady: How about some fentanyl?
Vinny: I hear it works better if you mix it with heroin.
Recovery Nurse Lady: I don’t think so, Vinny.
Transport Girl #2: I’m going to take you back to your room now.
Vinny: You’re not Phoebe Cates.
Transport Girl #2: And you’re not Brad Pitt.
Mrs. Vinny: Hey, Vinny.
Vinny: How was your test?
Mrs. Vinny: (just back from her test at school) It went well.
Vinny: Zzzzzzz….
Mrs. Vinny: Hey, Vinny.
Vinny: How was your test?
Mrs. Vinny: It went well.
Vinny: Zzzzzzz….
Vinny: How was your test?
Mrs. Vinny: It went well.
Vinny: I already asked you that, didn’t I?
Mrs. Vinny: Yes.
Vinny: Zzzzzzz……
Vinny: How was your test?
Mrs. Vinny: It went well.
Vinny: I already asked you that, didn’t I?
Mrs. Vinny: Yes.
Vinny: Zzzzzzz……
Michelle CNE: Do you want something to drink?
Vinny: Bombay Sapphire martini, up. Shaken, not stirred.
Michelle CNE: How about some juice, Mr. Bond?
Vinny: Fine.
Michelle CNE: Here are some crackers if you feel like eating.
Vinny: I love you, too.
Michelle CNE: So when you get home, blah blah blah, blah blah, blah blah blah.
Vinny: (blank stare)
Michelle CNE: Any questions?
Vinny: (looks to Mrs. Vinny)
Mrs. Vinny: I’ve got it.
Michelle CNE: How’s the pain?
Vinny: How about a T3 for the road?
Michelle CNE: I can do that.
Vinny: I love you, you know.
Michelle CNE: I know. Go home now. And good luck.
The Diagnosis
So, remember that cyst they took out of my neck? Yeah, that one. Well, they didn’t let me take it home like I wanted, which is good because after the novelty wore off I’d probably have thrown it in a drawer and forgotten about it. But they’re a little more formal at the hospital and send it to pathology so they can test it, because, well, “what the hell is that thing?” Which was good in this case since it turned out to be cancerous.
But it’s very treatable and I expect to fully recover. Really. So chill. I mean it. I’ve spent the last four weeks being scanned and scoped and prodded and poked (at least it’s not prostate cancer), but I found an excellent team of head and neck cancer specialists at The University of Chicago who have determined it metastasized from a small tumor at the base of my tongue. It’s nothing they haven’t seen before, and they assure me that their regimen of chemotherapy and radiation treatments has a high probability of success, even more so with someone in my otherwise good health and relatively young age. Yeah, I kind of laughed at that one, too, until I looked around the waiting room.
I’ve found not everyone is quite as ready as I am to joke about it, but if you’re up to the challenge you can read the details of my exploits below. It’s a little long since it covers a month, so pace yourself. If you aren’t up for it, then go read a cookbook. It won't be as funny, but at least you’ll have something to eat when you're done.
The Plan
Sorry I’ve been remiss in updating, but I’ve been a little distracted. No, Crystal Bernard has not moved in across the street and is not doing Pilates with her blinds open. No, Beth Hart has not asked me to collaborate on her next CD. No, Brooke Burke has not hired me as a lactation consultant. However, you might recall that I did have my neck sliced open so my doc could take out a lump he called a branchial cleft cyst. Realizing that I don’t need to go to med school for 4 years to know what the hell he was talking about, I simply typed that into The Google as George Bush would suggest and got the lowdown. Apparently we all evolved from fish, which is why you see those fish things on Christian’s cars. Once we crawled out of the water and didn’t have to swim everywhere, our gills started going away during embryonic development. That’s what Darwin’s The Origin of Species is all about. But sometimes your body doesn’t figure out it’s not a fish soon enough, and you’re born with some gill left inside your neck. Then randomly, one day, usually if you’re thinking about fish too much, or eating too much fish, or wishing you were a fish, or even just really enjoy those dumbass fishing shows on TV when they should be showing hockey games, your gills start to expand and form a little lump in your neck. You then have to go have it removed so you don’t turn into Patrick Duffy.
My gills got removed without any problem and the doc stuck a drain tube in my neck. This is a nifty silly straw type device that allows your wound to drain into a turkey baster bulb instead of collecting in your neck and forcing your head to explode. Little did he know I was such a badass that my wounds don’t drain so he asked me to come in the next day to get the silly straw and turkey baster thing taken out and casually mention that his buddy in pathology called to let him know that it wasn’t a bunch of gills he scooped out of my neck, but instead something called a squamous cell carcinoma. I’m no crossword puzzle expert, but carcinoma sounded like a nine letter word for cancer. I kind of liked the gill explanation better, but there was no going back.
Doc also said I had some good looking lymph nodes and I thought he was just trying to make me feel better, but he was really trying to explain it didn’t look like it had spread in my neck. I performed my happy dance for him, but I obviously wasn’t thinking clearly and forgot to consider the option that it might have spread from somewhere else. Son of a bitch. Fortunately, my doc learned something during his nine years of medical training and didn’t overlook the same possibility; I was scheduled for a PET scan a few days later.
If you don’t know what a PET scan is, it’s pretty cool. Except for the two-day low-carb diet and one-day fast. If that doesn’t kill you, then you use your remaining energy to chase down the mobile PET scan unit in Elgin, Illinois, and they inject you with some radioactive solution. Then you sit in a room and sing, “got to concentrate, don't be distractive, turn me on tonight, cause I'm radioactive” by The Firm until the techs get annoyed enough to stick you in the tube and start the test. During my freshman year in school the guy in the dorm room next to me was a nuclear something major, so let me explain how it works. See, the radioactive isotopes are like magic and bond to cancer cells and then they turn pink so they show up on the scanner thing the same way a thunderstorm would show up on weather.com. Then you go home and wonder if your semen will glow. It doesn’t, but it was fun checking.
Doc also wanted to stick his finger and some camera equipment down my throat but that tends to make people gag and/or bite, so I was also scheduled for another surgery so he could take some pretty pictures of my insides while I dreamed about Phoebe Cates. I can’t explain it, it just happens whenever I’m under the influence of class IV narcotics. I started my third fast in three weeks and dropped into the surgery center to accommodate him. Before starting, he told me he got my vacation pictures from Elgin and there was apparently a thunderstorm warning in the vicinity of my hypopharynx. In case you forgot 8th grade health class, that’s your throat. Just past your tongue. With that, they knocked me out with a sledgehammer to my head, had my pharynx pose for some pics, and decided to cut out some tissue samples. I’m guessing that was so they could find a match for a donor throat. When I woke up, it felt as if I had just finished a delicious snack of barbed wire with battery acid sauce, and they presented me with a dessert tray consisting of assorted ice chips and some Tylenol. I got sent home later that morning with a complimentary cup of ice and the names of two oncologists and a dentist.
I spent the next day making appointments to meet all my new friends. It was like Facebook except all these guys were interested in cancer instead of telling everyone how cute their kids are. I also started doing a little research and it scared the shit out of me. I was convinced I would be dead by dinnertime, which wouldn’t be all that bad since I hadn’t passed the barbed wire from my throat yet. They really should restrict Internet access from all patients at all times. It was like that time Peter Brady decided he was going to be a doctor and Jan was going to be his nurse and they started reading those books of diseases and Peter was convinced that he was going to die until Mr. Brady cleared everything up by discovering that two pages of the book were merely stuck together and the only thing Peter was suffering from was bad acting. The same way I suffer from run-on sentences. But I digress. Just in case I didn’t have a couple pages stuck together I did some additional research and found that the Chicago area has two National Cancer Institute Cancer Centers – The University of Chicago and Northwestern. UC had a nice website and I found a couple of badasses there that live for this stuff and have done a bunch of research about blowing this crap out of people. That sounded cool, so I sent them a carcinoma friend request and they accepted me for an appointment. Next I set about getting a copy of all my requested records and test results and photo shoots. UC even wanted those Glamour Shots I did back in 1991. Pervs. I found that getting a complete set of records was more difficult than getting accurate intelligence information out of Iraq. It took a box of jelly donuts for bribes and all the Vinny charm I could muster, but I eventually got what I needed. I was a regular Erin Brockovich with carbs instead of cleavage.
But my first appointment was with an oncologist at my local hospital. I was a little perturbed that he didn’t have all my records, but I was impressed with his enthusiasm. Even though the previous biopsy on my hypopharynx was negative, with little more than a referral and my own account of my case he was ready to fire up the radiation gun and get started. Fortunately his nurse was a little more tempered in her enthusiasm and realized I first needed to get clearance from the dentist and enjoy her half hour lecture on the side effects. She basically said that my skin will likely catch on fire, my mouth will dry out like an old catcher’s mitt, and I will lose the desire to eat Brownie Earthquakes from Dairy Queen. She also added that it was nothing that they couldn’t pretend would be taken care of with a little aloe, some Chapstick, and some Slimfast shakes. She also said that my semen wouldn’t glow, but I planned to check anyway. Oh, and as an aside on the way out, she gave me the name of a doctor that would install a feeding tube just in case I lose the ability to swallow freakin’ protein shakes. Thanks, Carol. They also wished me luck on my appointment next week with the chemo guy, whom I was assured had his own evil little plan for me.
Right after that I went to my new dentist since radiation can knock your teeth out faster than a hockey game if they’re not in top shape. I found it ironic that they stuck a lead shield over me during the x-rays since the purpose of my visit was to prep for my impending radiation treatment. But it made the uber-cute dental assistant happy so I obliged. Finally, the dentist man made his way over, shook his head at my x-rays, poked around my mouth, and informed me that I would need to tap my reserves of gold bouillon to make sure my mouth would not implode during treatment. I’ve grown rather fond of my mouth despite knowing where it’s been, so I agreed to his demands and scheduled the first of two entire afternoons with him while he called the local Mercedes dealer and made arrangements to upgrade his lease.
The following day I hopped a train downtown and then took another one to Hyde Park to visit the nerds at The University of Chicago and see what they would make of my envelope of scans and pathology reports. The first doc was well versed in origami and made a wonderful dragon looking thing. The rest of the morning was spent trying to undo his handiwork. Eventually they got it all unraveled and the real doctor came in to visit. Well, not the senior doctor yet, but a fellow. Essentially a badass in training. He had the pleasure of doing my history and physical and hearing all the great stories of my drunken accidents and diseases. Then the senior doctor came in with his own take. He said the PET scan was done too soon after surgery so it was worthless and I shouldn’t freak about the thunderstorm in my pharynx. I liked that and was about to get up and perform my happy dance for him... then he said even though the biopsy was negative he thought there was indeed something cancerous somewhere and my other doc just didn’t look well enough. He wanted to biopsy me real hard. Unfortunately he was merely an oncologist, but he had an ENT buddy downstairs whose interests include biopsying people real hard and finding cancer. In fact, he enjoys it so much he agreed to see me with 30 minutes notice. Just like the delivery guy at Domino’s. This guy was also very important so he sent his chief resident in to do my history and physical and sort though the paperwork. I guess the resident was bored, since he also decided to do a scope of my pharynx. This wasn’t nearly as fun as a PET scan. This nifty procedure employs something called a nasopharyngoscope, which has a camera attached to the end of small flexible cable thingy. Here’s the fun part – it goes up your nose, back into the throat and down to the vocal cords, stopping along the way to enjoy the view while you squirm uncomfortably in the captain’s chair. It’s like eating licorice through your nose. Good times. He also burned the journey to CD (not to be confused with a Journey CD) so that I could relive the experience when he showed his boss. No nodes on these vocal cords, baby. I guess there is still hope for my rock n’ roll singer career. Next the stud ENT doc came in, said hello, looked over the work of his loyal resident, busted open some popcorn for the pharynx video, and then shared his theory that it was indeed a bunch of gills that just went cancerous. However, not one to waste his mastery of the scalpel, he agreed that a real hard biopsy would be beneficial before getting trigger-happy with any ray guns. In the meantime I would also get more CT scans of my head, neck and chest, and schedule an appointment to meet their radiation oncologist. I was becoming very popular. They even wanted the tissue samples from the previous biopsies. Probably so they could try to clone me like a Scottish sheep.
That Friday afternoon I took the bus back to UC for the CT scans. They were running way behind schedule so I sat about an hour and a half with a bunch of octogenarians who seemed to be there to be tested for any signs of life whatsoever. Finally, my man Anthony came out to get me. He seemed like quite a competent radiology tech, but wasn’t the best IV dude I’ve run across. He eventually got the IV started, but left me looking like a heroin addict. I then got my three shots of contrast dye and wondered if it would make my semen look like a rainbow and made a note to check later. Each contrast shot was followed by a corresponding shot through the CT tube. I normally like making train noises while going through the tube, but the sexy automated female CT voice kept telling me what to do – hold your breath, don’t swallow, stop making train noises…. I was finally dismissed from CT and found that I missed the last express bus back downtown. I could take a cab or walk to the train station. UC isn’t in the best neighborhood and a cab would be prudent, but I was pissed enough about being late that I didn’t think anybody would mess with me. So I walked down to the "L" platform at 63rd Street. My uncle used to be a Chicago cop and had told me just to look people in the eye. They’ll probably think you’re a cop and leave you alone. And if threatened, just look and act crazy and it might help. I think everyone between the 63rd and 31st Street was so shocked to see a white boy that they must have assumed I was indeed a cop or crazy, and I made it back to the friendly confines of downtown for the train back out to the nurturing mothership in the ‘burbs.
Halloween was my meeting with the new and improved radiation oncologist at UC. I don’t think anyone should make doctor appointments on Halloween, because how do you know if you’re really seeing a doctor or just someone dressed up as one? I had to drive in rush hour to this appointment and it took about 90 minutes. By the time I got there and they took my vitals, I set personal best on the blood pressure. However, they reminded me that the higher numbers were not what we’re going for on that one. I then gave my history to the nurse, which by this time I had converted to an mp3 file so that they can just listen on their iPod while I sit back and play with the anatomical models. First was the consultation with the fake doctor – this time a medical student - to take my history again and do the physical. She was a slight girl and during the exam she had me squeeze her fingers, so I went gentle on her. She told me to do it again as hard as I could and I ended up cracking at least three of her knuckles. I was glad this wasn’t prostate cancer so she wouldn’t have a chance to get even. She then went to track down the real doctor to give him the executive summary and introduce me. I shook his hand, but didn’t crack any knuckles since the guy owns the ray gun. After reviewing the file, he did his own exam that included feeling around my mouth, including my tonsils and the base of my tongue. It also tested my gag reflex and I made a sound that I’ve only heard before when, uh, never mind. He said he found a hard spot on the base of my tongue and then proceeded to pull out his licorice scope. I sprung out of my chair and jumped to the ceiling, my fingers and toes dug deeply into the ceiling tiles keeping me out of harm’s way. He got his med student to coax me down with some Halloween candy, while I asked if he could just get the CD from the last doc. He insisted that he prefers glossy photos and proceeded to photograph my tongue. He was a cocky son of a bitch, but in a good way that exuded confidence rather than arrogance, and he was the first doc that wasn’t afraid to commit and tell me what he thought. He believed the primary tumor was at the base of the tongue and that the tests will just confirm he’s right. He said they would likely propose a round of chemo, followed by radiation and chemo concurrently. He told me that when he starts radiation, the side effects would be miserable but that it will likely be successful. There are other treatment options that he presented, but said if I don’t follow his proposal he’ll call me stupid since they know their shit and it works. Hard to explain how I didn’t perceive that as arrogant, but I think it was because it reinforced all the research I did and my decision to pursue treatment there. Finally I signed a consent form that listing a plethora of possible side effects, including death, after which he promised he wouldn’t kill me. On the way out, he also said I had time to take care of any teeth that need to be fixed or extracted.
One hour later I was back in the dentist’s chair and gave him the update. This prompted him to change the treatment plan on the fly and stated, “Well, if that’s the case, I think I’ll take out those two wisdom teeth.” To which I replied with that same gagging noise I made earlier that morning. He began numbing me up as I rephrased questions over and over to assure myself that I wasn’t going to end up clawed-in on his ceiling. I might have cried, but I was trying to be strong in front of uber-cute dental assistant who was looking especially uber-cute in her glasses that day. It wasn’t long before he was prying those motherfuckers out of my jaw while I took strength from the reassuring touch of uber-cute dental assistant’s knee on my mid-thigh. The extractions weren’t nearly as bad as I had expected. I left a small sack of South African krugerrands and assorted baubles on the reception desk, and within an hour I was walking out of there with a mouth full of gauze and a look on my face like a dog that had just been neutered. And a card with the times for my next three appointments. I was sore and cranky and didn’t even care what color my semen might be. To make matter worse, I didn’t feel like eating and had to start my next fast at midnight for the next day’s surgery. I spent the evening walking around the neighborhood looking for dogs to kick. To any humorless PETA members, that was a joke so take your boycotts elsewhere and leave this blog alone.
Next day, Mama Vinny picked me up at 6:00 a.m. for the trek back to UC for my second scope. My nurse botched the first attempt at the IV resulting in something called a blown vein, which should not be confused with anything you might see in your favorite porn movie. I made the mistake of peeking when she mentioned that my vein looked like a beached whale on my hand, and I broke into a cold sweat, went rather pale, and might have hurled had I eaten anything in the last 24 hours. She did rectify the situation quite to my satisfaction, I calmed myself down by singing Morning Train by Sheena Easton, and then was visited by a string of curious students and residents that would be working with my doctors. It was like a receiving line at the School of Medicine. Eventually my senior doctor found his scope and we got started. They must have tired of my singing and before I knew it I was out cold. I woke up with a sore tongue and a terrible hangover and stated as much. And then it was suddenly worth it. The nurse busted out the Demerol. Liquid gold. I watched carefully as it entered the IV and felt a wave off goodness flood my body. I asked my mom to get my wallet so I could tip the lass. I professed my readiness to go home so that I could watch Univision and fingerpaint the walls of my apartment and tell nonsensical jokes to them. She agreed as long as I was able to dress myself. I carefully pulled on the sweats and laced up the Chucks and floated to the elevators. I rode my flying carpet to the car, and attempted to give my mom directions back home. The GPS in my brain was somehow still firing and I got us back to the ‘burbs. I requested a stop to get a milkshake from Culver’s and ordered their seasonal Pumpkin Spice. I laughed to myself as I thought they should also offer Baby Spice and Scary Spice shakes. But not Posh. I wouldn’t drink those. I made it back home, and decided to answer some work emails while drinking my shake. I haven’t gone back and looked, but I think I still have a job. Then I passed out on my bed while thinking about what the world would be like if people had to dress in clown suits instead of business suits for work. I woke up when the Mrs. got home from school, and she seemed amused as I repeatedly tried to say anesthesiologist without wildly slurring or losing my place in the middle of the word. She rewarded my efforts with a bowl of requested oatmeal and some more T3 (Tylenol #3, the stuff with codeine) to keep my buzz going. Which was important, as any movement of my tongue from its position on the floor of my mouth caused the same sensation you might have upon accidentally chomping on your tongue with your molars. Later that night, I had a protein shake, popped some more T3’s, and dreamt of jello wrestling with Phoebe Cates and Crystal Bernard.
I spent the next week drinking protein shakes and eating oatmeal, soup, ice cream and Tylenol. I got the stitches out of my mouth where my wisdom teeth used to be and celebrated with a donut from the Krispy Kreme drive-thru. But even more important than my visit to the uber-cute dental assistant, the ENT nurse called to let me know that the biopsy on the base of my tongue was positive. She delivered the news in her standard grave tone, but I informed her that this was really good news. They’ve positively identified the source of this mess and can focus their treatments now without turning my whole upper body into Chernobyl. I was also informed that I was on the agenda that evening for their weekly tumor board meeting so that they can discuss my case. I felt pretty important and asked if I should send a plate of banana nut muffins or something. The nurse assured me it wasn’t necessary and that after a spirited game of Rock, Paper, Scissors someone would call me later in the week with specifics of what I could expect next.
Better Living Through Chemistry - The Chemo
The first phase of the proposed treatment was eight weeks of what they call “induction” chemotherapy, which I’ve found out is nothing like a Hall of Fame induction. I tried donating my Hogballs basketball jersey from college intramurals, but they stuffed it in a biohazard bag, kicked me in the shin, and told me to keep that crap out of their hospital. But I digress. Induction chemotherapy is fairly new from what I understand. In fact, I don’t understand much, so let me offer up my disclaimer – everything in this blog is just my interpretation and understanding of what the hell is going on. My studies in business have not helped much, nor did my failed attempt at an engineering degree. At times, my info is also based on websites maintained by slutty teenage girls and Romanian prostitutes. Other times, I ask Mrs. Vinny, a first year med student, but I pretty much hear what I want to and often inaccurately translate into layman’s terms. So, induction chemo. I guess they can never really be sure that the cancer hasn’t spread elsewhere, and since it just takes a few cells to start up again, they pretty much carpet bomb your body with toxic chemicals to kill everything off. It’s meant to reduce the recurrence rate so you don’t try to come back and collect too many frequent chemo points and comps. This time alone I almost earned enough for a free sponge bath. With some luck, induction chemo should also shrink your primary tumor like a scrotum in an ice bath.
My doctors’ toxic chemicals of choice were:
Cetuximab aka Erbitux – This one is famous. It took Martha Stewart down. The maker, Imclone, had it's first application for this drug rejected, causing it's stock to plummet. Mrs. Stewart was buds with the CEO over at Imclone and coincidentally sold her shares immediately before the announcement. The FDA rejected it because they questioned some of the trial protocols, but a couple years later Imclone re-did their application in the proper color ink and the FDA agreed that Erbitux does what Imclone said it does. Erbitux blocks these things called growth receptors on cells. When those are blocked the cell never receives signals to split and the cell eventually gets bored and self-destructs. Kind of like marriage. I got this drug every week.
Taxol aka Paclitaxel – This one goes into the cells and finds a piece called the tubulin that they need to divide. Then it hooks up with the tubulin like a good wingman and keeps it busy so the cell can’t divide. So even if a cell gets the signal to split, it won't be able to accomplish that. It's like stealing a mechanic's socket set. I got this one for three weeks, with one week off so my liver didn’t explode. Then repeat for three weeks.
Carboplatin – This is the platinum based drug that I guess is pretty common in chemo. My understanding is that this one goes in and scrambles the DNA of the cells like McMurphy’s brain during a lobotomy. So even if it manages to split, it's all jacked up and your body signals it to commit cellular suicide. I guess this one is nasty, so I only got it once every four weeks.
The Process – Every Tuesday morning, I’d get up around 5 a.m. to trek down to the south side of Chicago, the baddest part of town, and if you go down there you better just beware of a man named Leroy Brown. Fortunately, Leroy isn’t up that early so my treks were uneventful. Once there, I’d check in and take my place with about 50 other people sitting there for all types of infusions. They draw some blood for labs and you sit and wait some more. Then eventually you gain admittance past the velvet ropes into the infusion room – about 30 recliners ringing a room. Not exactly Lazy Boy quality with drink holders, but just flesh colored vinyl. There are also some enclosed rooms with beds for the really sick or lazy and a couple nurse stations in the middle. After about an hour, I get a copy of my labs and have Mrs. Vinny explain them. The explanation is usually over my head, but I nod knowingly and briefly feel good about getting my money’s worth on med school tuition. Once the labs prove I’m alive enough to get killed some more, they send the orders off to pharmacy and I wait about another hour. Then the pharmacist decides my labs aren’t good enough and “fails” me and throws out my order until my nurse calls and “unfails” me and tells them to quit being dicks about it. Where was she when I was in college?
Eventually the meds are ready and come in a nice biohazard bag, which makes the nurses look like they just got back from the Chernobyl Galleria. They unload the booty and after finding a juicy vein for the IV, start pumping the premeds into you. One to prevent nausea, another to prevent vomiting in case the first doesn’t work, some pepcid for your stomach and then my favorite – the benedryl. Week One they pumped it in but instead of the pleasant buzz they told me to expect, I got dizzy, started sweating profusely, turned green and my blood pressure dropped to 70/30. Just like my wedding day. It was quite the spectacle, but I eventually recovered and now they drip it in over ten minutes to avoid those good times. Everything else is half speed in week one, too, to make sure you don’t have any deadly reactions to the drugs that will kill you before the docs allow. I survived round one and would earn the privilege to repeat this process for eight weeks.
Eventually both the nurses and I get tired of starting an IV every week, so a few weeks into it they installed something called a port-o-cath into my chest. This is about the size of a contact lens case with a couple rubber pads in which they can stick the IV needles without having to find a vein every week. A line runs from the “port” to the jugular vein, and my arms no longer look like those of a heroin junkie. But I now have a contact lens case implanted in my chest just below my collarbone. If I were still in grade school, the teacher could literally pin notes to my chest. On my off weeks I use it to display my 3-year-old niece’s art projects. The port is placed in a fairly quick outpatient procedure under heavy sedation, and other than some moderate pain for a few days it isn’t too bad and definitely beats repeated IV’s and blood draws.
When you start the chemo process, they give you an exhaustive list of every possible side effect so if you start to bitch they can just say “we told you so” and get back to poisoning you. After my first round I felt fine. Even went to work on Wednesday. And then around noon I passed out on the conference room table and didn’t wake up until Friday when the cleaning lady poked me with a feather duster to see if I was alive. I quickly learned that after my Tuesday chemo feedings I had about a 24-hour grace period before a nasty hangover took over for about 4 days. Like a bottle of Murphy’s Whisky hangover. I never laid in bed so long in my life. Except for that time in the handcuffs. Lost keys, my ass. But I digress. I didn’t want to move, speak, or eat. So I didn’t. Sometime Saturday I’d come out of hibernation, and I’d actually feel like Irish river dancing on Sunday and Monday before starting the whole process over again on Tuesday. I scoured the countryside on horseback looking for Irish rivers in the tri-state area to no avail. So I’d usually just opt for a pot pie and watch some football.
They said my hair would fall out, but I doubted the drugs would be able to pierce my lush mane. Then in week two I discovered I could pull out my hair as easily as the pink flamingos in my soggy front lawn. I planned a pre-emptive strike to avoid shedding like some breed of dog that sheds a lot, grabbed the clippers, set them on 1, and trimmed my locks like a sheep during a yarn shortage. My George Clooney good looks transformed into some Matthew Fox good looks, which seemed more relevant and made me pretty happy. However, a couple days later I was washing my hair and my hands were covered with my newly shorn fuzz to the point that I looked like Chewbaccan hand model. At this point in the shower I was simply wiping my remaining hair from my scalp, and then finished off the remaining stragglers with my clippers. My Matthew Fox good looks had quickly transformed into some Howie Mandel good looks. I searched the house for hot models with silver briefcases to no avail, and then sadly retreated to my bedroom.
At about the same time I was warned that the Erbitux would give me a delightful rash on my face, chest and back. It did. And it wasn’t a problem until late in week two when the rash on my face erupted into a gaggle of pustules. The area around my forehead, nose and cheekbones soon resembled and felt like a meltdown in a nuclear reactor. Cold compresses were the only relief and that only lasted a few seconds, kind of like sex. I walked outside hoping to get hit in the face with a soothing snowball from some mischievous kids, but found no one but some lonely senior citizens hoping for the same attention. It sucked like that for two weeks. They gave me some antibiotics, but it mostly has to get better on its own. After the pustules went away, it just looked like a bad case of acne. I survived that in 9th grade, so I think I could handle that now.
The only other side effects of consequence during this were some minor mouth sores. The type you might get by accidentally biting the side of your mouth or burning your tongue on a blowtorch. When these occurred, it was resolved by using one of my mouth rinses containing lidocaine, which would numb my mouth until I could finish eating or drinking.
And so it went for eight weeks. I met some good nurses. I gained even more respect for family members that would accompany me and sit there for 6-8 hours while the bags dripped into me - even when I didn’t feel like talking and wasn’t very good company. I slept more than I had in the previous year to date. And I learned that this was going to kick my ass no matter how healthy I thought I was going into it.
Now that the induction chemo part was over, I would start the chemo-radiotherapy. Continued chemotherapy to support the radiation treatments I would receive over the next ten weeks to finish off the primary tumor.
Burn, Baby, Burn - Chemoradiotherapy
In the last installment of Cancer Boy, we left our hero after having completed eight weeks of induction chemotherapy. Next on Dr. Evil’s agenda was a ten-week period of chemoradiotherapy, which would combine the finest elements of chemotherapy and radiation in order to rid me of that pesky tumor on the base of my tongue. The ten weeks were divided into 5 two-week cycles. The first week was inpatient for chemo and twice daily radiation, and the second week spent at home to experience the full extent of the side effects (with a return trip every Tuesday for more chemo and a check-up). I was warned up front by my doc that this portion of the treatment would be absolutely miserable and I should expect some pretty severe side effects, difficulty eating, and weight loss. In return, he would kill my cancer and a magic unicorn would take me home when it was all over. I signed a waiver giving him permission to bring it, and in return he promised he’d try not to kill me.
I would check into the hospital every Sunday at noon, get my room assignment, unpack my lingerie, porn, and troll dolls, and wait for my nurse and doc. The nurse would draw some blood and jam the IV needles in my port to ready it for the collection of toxins and other experimental concoctions that they were working on that week, while the doc on call would give me the once over to wager whether their plans would end in my early demise. I was approved for action and Sunday evening they would start me on my new chemo plan.
My new chemo drugs of choice:
Fluorouracil aka 5FU: They would start the IV on this one at around 6:30 p.m. on Sunday and it would run continuously for five days until they would release me 120 hours later. I could expect mouth sores, loss of taste, and other delightful abdominal ailments from 5 FU. However, if you remember your 8th grade biochemistry, 5-FU is a commonly used pyrimidine antagonist. Like the other pyrimidine antagonists, 5-FU is similar in structure to the normal molecule. It functions to inhibit DNA synthesis both by blocking the formation of normal pyrimidine nucleotides via enzyme inhibition and by interfering with DNA synthesis after incorporation into a growing DNA molecule. I stole that from some Emory University site, but basically it means that the cancer cells will fry more easily when I get sent to radiation.
Hydroxyurea aka Hydrea: This came in a giant capsule form that I took Sunday night and then two hours before each radiation treatment. This might cause nausea and vomiting, so I’d also get my anti-nausea and vomiting drugs with it. Again, going back to 8th grade biochem and Emory University, hydrea is thought to inhibit DNA synthesis and prevent cell division, but does not interfere with the production of RNA or protein. Though the exact mechanism of this drug remains unknown, research suggests that DNA synthesis is blocked by interfering with the activity of an enzyme that is important for the process. That basically it means that the cancer cells will fry more easily when I get sent to radiation.
Cetuximab aka Erbitux: This is the clinical trial drug that was also used in the first part of the chemo process. I would get this one every Monday so that Dr. Evil could see what would happen if they throw it in the mix with the other two drugs and some radiation. This was the guinea pig portion of my treatment. The people in the other half of the study would get Erbitux with a different combo of drugs and once daily radiation for seven weeks. May the better half live!
The official name of the study was A Randomized Phase II Trial of Concurrent Chemoradiation with Cetuximab (ERBITUX®), 5 Fluorouracil, Hydroxyurea, and Twice-daily Radiation (CetuxFHX) versus Cextuximab (ERBITUX®), Cisplatin, and Accelerated Radiation with Concomitant Boost (CetuxPX) after Induction Chemotherapy in Patients with Locally Advanced Head and Neck Cancer. For anyone not familiar with these clinical trials, in this trial people are randomly assigned to each group and both groups receive well-established treatment regimens without it being known which may be better. Then they toss the new drug, Cetuximab, on top to see what happens. That combo isn’t approved by the FDA for head and neck cancer, so I hopefully get to help prove it’s effective.
A couple weeks before this phase I had to go for a radiation simulation, in which they do some CT scans and make you a nifty “mask” for use during the treatments. The mask consisted of three fiberglass type strips that were molded to my face – one under the chin, one over the chin, and one across the forehead. Once it’s fit to your face, they can then strap your head tightly to the table like Hannibal Lecter so you don’t move or attempt to eat anyone while getting shot with radiation. I guess accuracy and personal safety is a priority to these people.
My first radiation treatment would be any time between 5:15 a.m. and 6:30 a.m. Not only are they sadistic, but also they wake you early for it. The main objective during radiation is to hold perfectly still and not freak out at being strapped in for 20 minutes. I only freaked a little my first time and they recommended a nice little sedative for future treatments. Only one time after that I had to ask to get out of my mask, when I told them I had some mucous issues. “Spit or swallow?” my tech asked. I replied that it was the first time I’ve been asked that question. My techs Meghan and Kenny were always very cool and got a good laugh. By the way, I swallowed. Once settled in, the actual procedure entailed receiving doses, not unlike an x-ray, each for about 30-60 seconds from about 12 different positions around my head, zapping everything from my jaw line to my collarbone. I was such a model patient I settled into the 5:15 slot so I wouldn’t start their day with any problems. Now if you were paying attention, you might remember that I needed to take my Hydrea two hours before radiation. So make it a 3:15 a.m. wake up call. In fact, let’s review a typical relaxing day in the oncology wing…
Midnight: Vital signs taken by nurse’s aide (every 4 hrs)
3:15 a.m. – Wake up call to take Hydrea, note roosters are still sleeping
3:20 a.m. – Try to figure out why there are roosters in my room
3:30 a.m. – Clean neck in preparation of radiation to avoid wet, messy explosions
4:00 a.m. – Vital signs – still alive
4:15 a.m. – Request sedative and morphine as needed
4:30 a.m. – Cue up Mother’s Little Helper on iPod, take drugs and meditate
4:44 a.m. – Sink into deep meditative state, minutes from total enlightenment
4:45 a.m. – Pick up by patient escort, discuss implications of latest UN resolutions while in transit
5:00 a.m. -- Arrive at radiation oncology for 5:15 treatment, learn about the Inca, Aztec, and Spanish influence in Mexico on waiting room TV. Get price of pork bellies from farm report if behind schedule.
5:30 a.m. – Called in for treatment, arms bound to the side, head strapped tightly to the table, ordered to lay still for 10 to 20 minutes depending on cycle. Additional five minutes required on Mondays for x-rays to align everything and make sure my head hasn’t grown.
6:00 a.m. – Learn more than I really care to about crocodiles from Animal Planet on waiting room TV
6:30 a.m. – Patient escort back to room. Discuss Federal Reserve economic policies in transit
6:45 a.m. – Try to enjoy morphine/sedative buzz and catch up on some sleep.
7:00 a.m. – Welcome by new shift nurse
7:15 a.m. – Request more morphine as needed, return to sleep
8:00 a.m. – Wake up for vital signs, return to sleep
9:00 a.m. – Wake up for pre-rounds by physician assistant and resident on call, argue over how much weight I’ve lost, return to sleep
9:30 a.m. – Wake up for first feeding, return to sleep
10:00 a.m. – Wake up for rounds by physician assistant, resident on call, and attending physician, address drastic weight loss issues, return to sleep
10:15 – Wake up for rounds by research nurse and nurse practitioner, return to sleep
10:45 – Wake up for rounds by nutritionist to address weight loss issues. She nods in sympathy like Deb in Napoleon Dynamite and agrees that I’m not going to turn to dust.
Oh, and return to sleep.
11:30 – Wake up from nurse in radiation oncology to examine burns on my neck and try something new. Return to sleep.
Noon – Vital signs. Still alive.
12:15 p.m. – Access wireless connection to check email, update fantasy hockey lineup and attempt to find porn sites not filtered by UC.
1:00 p.m. – Turn on TV, check CNN Headline News for uplifting stories about war casualties and missing white people. Wonder why black people don’t get abducted or lost nearly as often.
2:00 p.m. – Patient escort to radiation, discuss investment opportunities resulting from growing global economy while in transit.
2:15 p.m. – Arrive for treatment, forced to watch Maury with fellow drugged up patients who somehow seem entertained by it.
2:45 p.m. – Arms bound, head strapped, zapped with ray gun for second time that day.
3:15 p.m. – Watch Judge Judy on waiting room TV, losing will to live
3:30 p.m. – Patient escort back to room, discuss merits of 3-4 defense
4:00 p.m. – Vital signs, still kicking
4:15 p.m. – Coat neck with Neosporin, greatly reduce chances of suffering manual strangulation
4:45 p.m. – Take care of second feeding of the day, try not to puke
5:00 p.m. – Check email, send messages begging to bust me out early
6:00 p.m. – Call DirecTV and attempt to order NHL Season Pass for my room
8:00 p.m. – Vital signs, barely clinging to life
8:30 p.m. – Flip through channels hoping to find a Pauly Shore movie
9:30 p.m. – Nightly call from Mrs. Vinny. Convince her that life is swell so she can get back to memorizing cranial nerves for upcoming exam
10:00 p.m. – Begin nightly primping routine with collection of ointments, gels, rinses, etc that are supposed to keep me alive
10:30 p.m. – Turn on Letterman, attempt to go to sleep
11:55 p.m. – Finally succeed in dozing off
Midnight – Wake up for vital signs… argh.
During the second cycle, mouth sores, icky mucous, sore throat, and loss of taste made eating as attractive as a date with Rosie O’Donnell, so I gave up food cold turkey. Not just cold turkey, but all food. I barely managed to drink one high calorie shake each day, but my docs didn’t think 500 calories per day would cut it and scheduled me for a feeding tube. I didn’t complain too much since without intervention I would soon be mistaken for an Olsen twin. After the procedure I woke up with a small rubber tube protruding from my stomach just under my last rib on my left side. They gave me a syringe to flush it, a case of canned nutritional drinks to sustain me, and a warning to keep the Jack Daniels out of there. Meal times simply involved pouring a couple cans in an IV type bag and spending a couple hours letting it drip into my stomach while trying to determine what kind of wine goes best with something called Jevity 1.2. I was also dehydrated and even got the home version IV pole so I could give myself a liter of saline daily through my port in between my normal feedings. The home health care company sent over a plethora of supplies, and I’m pretty sure I could use the leftovers to supply the Red Cross when the next catastrophe hits.
It did get ugly for a while, where even I failed to see any humor – if you’re just here for the laughs, you can skip the next paragraph.
I’d say somewhere in the middle of this, probably in the third cycle, it got as bad as the doc had promised. Maybe even a little worse than I had imagined. I was losing about a pound and a half a day during my hunger strike and eventually ended up 27 pounds lighter than when I had started. I hadn’t been that skinny since high school when I had the metabolism of a
After I had just checked in for my fourth cycle, I felt like crap and now had a pain in my back. I was also trying to get some nutrition in my feeding tube as the pain grew. And grew. It was like nothing I had ever felt before. So I tried to ignore it. That should make it go away. But like a pissed off two-year old, it refused to be ignored. I got ill and contorted my body any way it would go to try and alleviate the pain, and before I knew it I was kneeling on all fours on my bed, puking into a bucket and holding my back with an expression on my face that said, “Just kill me now.” My nurse happened to walk by, poked her head in and asked cheerily, “Is everything okay here, Mr. Vinny?” I’m not a violent person by nature, but if I weren’t busy hurling and clawing at my own back I might have gnawed her ear off as I had reached a new low. She did regain a few points by getting the doctor on call there pretty quickly. He was able to convince me that examining me doggy style was not very dignified and I might be more comfortable sitting back. I obliged and he surmised I might have a kidney stone, and he rewarded me with massive doses of IV morphine. A CT scan confirmed his diagnosis and he informed me that it was small enough that it should pass on its own. So I buckled up with my morphine dealer nurse and tried to think about candy canes and Betty Rubble until the pain slowly subsided six hours later. Just the memory of that night caused me to chug a bottle of water right now to flush my kidneys out.
Also in the fourth cycle, an unexpected side effect of the Erbitux reared its ugly head. It had made the skin more sensitive to the radiation and, instead of just a couple bad spots, my entire neck was burned as if it had been stuck in a rotisserie oven for a week. With the proper spices from Kenny Rogers Roasters it might have made a nice meal in a primitive Paraguay village, but here it elevated me to celebrity status as the staff set up photo shoots so they could share the results with the rest of the medical community. Unfortunately I was on morphine at the time and failed to execute an agreement that might pay me royalties. Twice daily I’d have to soak my neck to clean it and re-apply the ointment or cream they gave me, the process being as much fun as a full Brazilian bikini wax. Or so I hear. After that, I’d put on my customized t-shirt with a cut out neck (to avoid sticking), and sometimes I’d add legwarmers for that Jennifer Beale Flashdance effect. What a feeling! As much as I enjoyed reliving the 80’s in my Princess Reeboks, I added this new routine to my list of cursed activities.
By the fifth cycle, I was master of my disconsolate domain. I knew the routine and it was just a matter of mechanically knocking it out another two weeks without trying to think about it. Kind of like a weathered dancer at a low-rent strip club. I mostly took drugs and slept, and had taken to merely grunting at anyone who interfered with that. The cool thing was that people seemed to understand and accepted it. Everyone seemed excited that I was in my last cycle, but I was too bitter to share in it and would have rather they apologized for the first four cycles. By the time the last day of my inpatient stay came around, I did smile politely when the radiation oncology staff presented me with a certificate of completion. And right before I checked out, my favorite oncology nurses sang me a tune and presented me with a shirt signed by the staff, although I never remember being treated by Emma Roids or Willie Maykette. (Okay, I admit the last one was a little dark.)
I had to go back the following Tuesday for my final chemo treatment, which was rather anti-climatic, and I left pissed off that I didn’t get a certificate or a t-shirt. I couldn’t find the magic unicorn to take me home, either.
The following weeks post-treatment would involve a series of follow up appointments to track my recovery and, after approximately 4-6 weeks, a series of tests to make sure that the cancer packed up and left.
Epilogue
On March 16th I got my final dose of radiation and glowingly checked out of the hospital for the last time. The following Tuesday they pumped the last IV bag of hazardous materials through my port, and I walked out knowing I had just completed my 18-week course of treatment. Everyone seemed happy as a pancake (if pancakes could be really happy) and was congratulating me as if I had just finished an iron man triathlon. But instead of washing a grease paint number off my arm and laying down in the finish line tent for a butt rub, I just went home and got back into bed. I felt like crap, had little hair, dry skin, a severely burned neck, a sore throat, was eating exclusively through a tube in my stomach and certainly didn’t feel like anything was over.
They warned me it would be several weeks before I started feeling better since the chemo and radiation takes time to clear ones system and even longer for all the tissue damage to heal. But all along I was so focused on the March 16th finish line that I found myself unprepared to deal with anything past that magic date. Like getting married. Sure, dancing all night to the Village People on your wedding day is fun, but then it’s over and, oh, crap, what just happened? Just kidding, Mrs Vinny. Maybe I allowed for a 2-week grace period after treatment, after which I planned to be back to eating chili-cheese dogs, cycling across the state, and helping old ladies cross busy intersections. Not quite. I started taking short walks around the neighborhood when the weather was agreeable, but it was the old ladies helping me cross the street.
The side effects lingered and instead of accepting them any longer, I ignored the wisdom to know the difference between the things I could and could not change. Serenity prayer, my ass. I tried getting back to a normal diet and failed miserably as I was tempted to throw plate after plate of unfinished meals against the wall. I refused to use that goddam feeding tube anymore and drank nutrition shakes until I was ready to sue Ensure for making me hate chocolate. (Any bored attorneys out there?) I tried to go out and rejoin society and was welcomed back with a nasty cold and infection. Perhaps I shouldn’t have started kissing slutty coeds so quickly. I quit eating again and even wondered why I bothered going through the previous 18 weeks.
I went back to the doc every Tuesday where my self-perceived lack of progress seemed to otherwise impress them to no end. I felt as if they were examining the wrong person and began to resent the weekly 2-1/2 hour commute. I suppose the fact that I was walking into their office after what they did to me was good enough for them. They saw my hair had grown back (now black and gray, instead of brown) so they figured I was doing great. After four weeks, they deemed me ready for the usual CT scan of my head, neck, chest and abdomen to see if anything abnormal continued to exist within. I went into radiology without a doubt that there was no way anything survived the treatment regimen and dared them to find something. The bastards did. Sort of. A spot near the lymph nodes in my neck that they wanted my ENT to examine just to make sure it wasn’t anything. The said ENT was on vacation that week (Disneyworld, thanks for asking) so I was freaked out for several days. My hubris suffered a blow unlike any other. When the ENT returned, he told me to chill. He was confident that it was scar tissue from my previous neck dissection, and that I was right that nothing should be growing there while under the influence of my 18-week chemo bender. I chilled a bit, but would still have one more surgery to scope out my insides and have my tongue biopsied.
The following week, I checked in on Thursday for the surgery and ran the usual gauntlet of med students, interns, residents and senior docs that take an interest in your case at a teaching hospital. They all managed to coordinate my timely trip to the OR where I was pleasantly sedated, then put under while they stuck scopes and hands down my throat one more time, and then awakened about 30 minutes later for some juice, pain meds and discharge instructions which included no fire-eating or auto-erotic asphyxiation. Jeez, what else is there?
I didn’t expect the pathology report by the end of the week, but certainly looked forward to it at my next Tuesday appointment with oncology. It wasn’t in the system yet, but they assured me that I didn’t have anything to worry about because pathology would have called them right away if anything was amiss. I’m not sure I subscribe to the “no news is good news” school of thought when it comes to foreign bodies growing inside me, so I followed up on Thursday with my ENT. His nurse said the report still wasn’t in the system so she called pathology and they said it might have gotten thrown out with the leftovers from last week’s potluck lunch, but they would check to see if it might have fallen behind a file cabinet or something. At this point I was convinced that my tissue sample was mistakenly delivered to the cafeteria or they found a lump the size of a Yugo in my tongue and were still baffled about how it got parked there. I spent the weekend doing estate planning to insure that my publishing empire would continue with minimal interference from the probate system. Fortunately this wasn’t necessary; the nurse woke me up with a phone call on Monday morning with those three little words that everyone longs to hear – no carcinoma seen. She also added some stuff about mild atypia (therapy-related), hyperkeratosis, and mild chronic inflammation of the squamous mucosa, but I really wasn’t listening as I had tossed my cellphone in the air like a Mary Tyler Moore beret. The only downside at that time was that my docs didn’t want to take out the feeding tube because I had lost a few additional pounds (due to the flu and those slutty coeds) even though I wasn’t using it.
I was able to stabilize my weight and even regain a few pounds in the four weeks leading up to my next appointment. I’m still stuck at 167 (25 lbs less than when I started), but after a few sets of bicep curls and squat thrusts I should be back to at least 175. The doc was onboard with that and authorized them to take out the feeding tube and port-o-cath the following week. However, he did confirm I had developed minor case of oral thrush, thank you. Yes, a delightful yeast infection of my tongue. I got a nice mouth rinse that should take care of it, so keep the bread and vagina jokes to yourselves.
The feeding tube and port removal was scheduled with the Department of Annoying Medical Device Removal (aka Interventional Radiology) for the following Tuesday. The care I’ve gotten at this hospital has always been good, but I always feel as if this department is managed by the Three Stooges or, at best, Homer Simpson. However, the procedures are not very complicated and they seem to get things done correctly, and the wonderful drugs they employ make the process much more tolerable than if one were not stoned off his gourd (just where and how did that expression originate???). After navigating the unnecessarily time-consuming check-in process and enduring the department’s painful IV policy and the pre-interview with the overworked resident who looks like he can pull off the procedure, I am finally wheeled into the room and rewarded with a delightful cocktail of benadryl, versed and fentanyl. The first one hits you like a long swig of tequila, the second turns the room into a private beach, and the third one converts your experience to a dream-like sequence in which evil doctors are implanting or harvesting unethical devices while you only care to know if they can ink a Bill the Cat tattoo on your ass before they’re finished. The whole procedure takes about 45 minutes and I started sobering up toward the end; enough to ask him if what I was feeling was him stitching up my chest after taking out the port. No pain since they give a local, just some pressure, but it was indeed the stitches going in. With that complete it was time to remove the feeding tube, which I read on a message board is done in a complex procedure known as yanking. I asked the doc about this and he clarified – he had been highly trained to grasp the tube and yank it out so I had nothing to fear. They don’t even give a local, but I confess that when he yanked it out it felt no worse than a punch to the gut from a woman defending herself from an unwelcome sexual advance. Or so I would imagine. In a twist on the old joke, I even had to ask him if it was out yet. It was. I was patched up, moved to recovery and out the door about 15 minutes later.
As of June, the only remnants of this ordeal are a dry mouth, minor difficulty swallowing, some skin discoloration on my neck, a receding hairline on the back of my head, the inability to grow a ZZ Top beard, and still some decrease in my energy level. Of all those, only the dry mouth really bothers me. Food doesn’t taste quite right and dry foods like chips or bread lost their appeal faster than Britney Spears. I also have to travel everywhere with a bottle of water or fire hydrant wrench, although my municipality strongly discourages the latter method. I’m not used to feeling this tired, either, but they assure me that my body is still in recovery mode and the energy will return. Oh, breaking news – that might also be partly related to my newly diagnosed case of hypothyroidism, which is a common condition following head and neck radiation. However, this can be controlled with one pill a day after they figure out the right dosage.
Looking back, I’m amazed at what the body can endure and how it can recover. In the middle of treatment, hell, even at the end of treatment, it was impossible to imagine ever making it as far as I already have. I keep telling everyone that all I did was keep showing up. The real credit and thanks go to my family; my friends; the docs, nurses and techs; the Academy; and whatever other forces out there that were working in my favor.
I’m starting back to work this week, so we’ll see how that goes. Going forward, I’ll have to go for a follow up physical exam and CT scan of my head, neck, chest and abdomen every three months since the greatest risk of recurrence is in the first 1-1/2 to 2 years. After two years, they’ll officially declare me “cured”, and I’ll get the CT scan every six months and eventually just once a year. And hopefully live to a ripe old age when I can roam the streets in my underpants and yell at the squirrels. And live happily ever after. The end, for now.
3 comments:
I know I've told you before, but thank you so much for sharing. I'll just keep getting in line for the next go-round and start planning that two-year out celebration. ;-)
Live long and prosper.
Even though I read it before, the suspense kept me on the edge of my seat. Glad to know you're feeling up to heading back to the office.... time to book some vacation!
The devil is in the details, so it's very cool of you to be so candid and include so many. The more unknowns you can get rid of, the better the next person will feel about his or her treatment, knowing some of what happens, what a schedule is like, etc. Of course, the happy ending doesn't hurt either. ;-)
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