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. F’er. 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, 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 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.
Post-Script: I’m consolidating and moving the entire series of posts regarding my experience to a separate blog so they don’t get lost at Leper Pop for anyone that might find them useful. And also to kind of archive the whole crazy experience for myself. I might add some other medical detail or bonus material, so please feel free to check it out or share with others. BOT Cancer for Dummies