The Road of Trials
I know that starting over is not what life’s about. But my thoughts were so loud I couldn’t hear my mouth. My thoughts were so loud I couldn’t hear my mouth. My thoughts were so loud.
- The World at Large
(Modest Mouse, Good News For People Who Like Bad News, 2004)
When I awoke on the third or fourth day of my “vacation” I felt I was well enough to do something other than laying in bed. I looked over my list of things I planned to do that I made last week while feeling “okay”. None of these “fun” things interested me, so I went into the living room and flopped down on the couch. I spent the next few days just going from the couch to the bathroom to the kitchen when I felt up to eating.
Alissa was mostly working day shifts during the week, which gave me the apartment to myself for the few hours I was active in the afternoons. I couldn’t handle anything creative; I just didn’t have any will to make anything. I mostly just sat around watching home improvement television. When I had the mental focus I would fire up whatever video game could give me the greatest escape.
I used some of the cash that my coworkers had given me to purchase Final Fantasy Online that had just come out. It was the first “massively multiplayer online” game for the Playstation 2. You could create any type of character you wanted, and go on adventures in a gigantic virtual world. It was a great escape for anyone with real-world troubles.
I spent most days running around the game, killing small creatures and exploring dungeons and learning to fish. With just my thumbs I was riding around on a giant bird in search of treasure and experience. I could meet people from all over the world and we could team up against larger, more powerful monsters in new and dangerous areas. I had a group of regular friends I would meet online for adventures throughout the day. None of them knew I was a Cancer patient, slumped on his couch sideways. To them I was simply Phaedra, the Elvaan Monk who was in search of fame and fortune.
For a while, this escape was completely viable. But as with most games, once I’ve figured out the basic mechanics and probabilities, it becomes a grind. Even in a massively multiplayer online world, I quickly grew tired of standing around waiting for enemies to spawn so I could kill them for a 0.02% chance to get the leather pants I was so desperate to find. (Seriously, my character didn’t have pants until level 9, and it really bothered me)
Something about the endless “grinding” for experience points, gold, and loot just wasn’t enough to keep me interested. Investing so much of my time into a virtual character seemed to be a waste of what I felt was a very limited amount of time left. If I was going to die, did I really want to spend the remainder of my time waiting for killer rabbits to appear in some virtual cave?
The deterioration of my physical condition was becoming hard to ignore. I was sore, everywhere, all the time. I was emaciated, pale, hairless, and I looked about 20 years older. I slept 16-18 hours a day, though I wouldn’t really call it “sleep”. I found it more and more difficult to get a good restful slumber. I couldn’t relax my mind or my body, and I tossed and turned, never really falling completely asleep but never being fully awake. I would get up every few hours to go to the bathroom, get some water, or just pace around the apartment.
This is when the frustration started to really come out. I felt trapped and confined. I didn’t have anything to do but relax and get better, and that was the one thing I couldn’t do until they stopped filling me with chemo drugs. The fear and anger combined inside me and crippled my already weakened mental state. The stress was starting to tear down my last barriers against complete hopelessness.
My physical deterioration was slow and steady. Every day I stayed in bed a little longer, ate a little less, and retreated further into my isolated world. To my close friends and family I was dealing with things as well as could be expected. I had a dark sense of humour that everyone said was going to get me through this. Inside was growing more bitter and resentful by the day.
It was unusually hot, even for mid-July. The Sun and humidity turned our apartment into a giant white oven. We had a small air conditioning unit in our bedroom but it only made that room bearable. The rest of the apartment stayed hot and humid for most of the Summer. I had spent most of last July inside a wonderfully cold office building. I only had to tolerate the heat going to and from work. This year I was spending every single day inside this apartment, sticky and sweaty and dizzy and nauseous.
One particularly warm day I woke up to find that we needed some groceries. Alissa had already gone to work so I phoned her and asked if she wouldn’t mind bringing home some cola and snacks. I was a couple weeks since my fourth treatment so I actually had an appetite. She flat out refused, and started to get upset with me. She said she was having a busy day and just wanted to come straight home after her shift. I didn’t bother to ask her what she planned to eat for dinner if one of us didn’t go shopping. I put on some clothes and my “bald guy hat” and set off to the store across the street from Alissa’s work.
Everything was fine until I got about half my items scanned at the register. I started to grab the bags and realized that I had probably bought too many items to comfortably carry by myself. Four full bags plus two packs of pop would have been a challenge for a healthy body, and here I was sizing up how I was going to get them home. I considered putting some items back but we didn’t really have any proper food in the house and I wasn’t going to buy myself Coke and not get her Pepsi. I grabbed my purchases and waddled out the door into the afternoon Sun.
It was only about ten city blocks; the walk usually took about 15 minutes. I was walking slower than usual, and the weight of the bags and drinks quickly started dragging me down. I barely made it one block down the street when I had to stop and take my first rest. I started to break down the distance into small manageable waypoints between here and the apartment. After a few minutes I picked up my good and proceeded to the next place I planned to rest.
I wondered at the time if the chemo was really the worst part of this. I was sweating so much it was going into my eyes and blurring my vision. I couldn’t wipe my face with no free arms, and I became locked into the pacing of my slow walking. I just looked down at the ground and kept putting one foot in front of the other. After what felt like miles, I looked up to discover I was still less than halfway home. This was going to be much worse than I thought.
I never really felt like I was going to faint or fall over. I just felt overheated like I had just sprinted a marathon. My chest was so tight and my breathing was short and laboured. The sweat had soaked through my clothes as if I was walking through a thunderstorm. The throbbing pain of my head started to become unbearable as I strained to keep moving forward. Another eternity later I was about four blocks away.
I put the bags down and sat down for a few minutes. I took stock of my day and how it was going. My wife couldn’t be bothered to bring home groceries, and my disappointment and frustration had already turned to guilt. She had a point, it wasn’t like I was doing anything important today. Maybe getting some fresh air in the Summer Sun was was just what I needed.
I needed to get home. I started to consider my options. The bus would only take me most of the way home, and I didn’t buy a bus pass that month anyway. A cab was right out: too expensive. Perhaps if I just held my hand out someone would notice the nice fellow with Cancer and offer him a ride home? I sat there for another few minutes before setting off again down the street.
It went like this for some time. I would walk a bit shorter each time, and rest a little longer. By the time I turned the corner and was within sight of the apartment, I was barely able to get a few feet without having to put the groceries down. I think it took me over an hour to walk home. When I finally got in the front door I dropped the bags and headed into the shower. I crumpled like paper into the bottom of the tub and laid there while the cold water poured over me.
I felt sort of good. Even though all I had done was get a few grocery items, the ordeal and the accomplishment made me feel like I wasn’t so weak or broken. The resentment of Alissa’s refusal to help had become pride in being able to do something myself. I didn’t end up in the hospital and here I was with melted ice-cream and warm cola to celebrate the moment.
My first CT scan as a full-fledged Cancer patient came and went without incident. I was an “expert” at this point; I basically didn’t even wait for the technician’s instructions I simply hopped onto the table, pulled my pants down to my ankles, covered myself with the provided bed sheet and put my arms above my head and waited. The giant doughnut-shaped machine spun to life and the lights above me started to flash as the procedure commenced.
The little happy face blinked green as a monotone voice spoke “Hold your breath”. It was actually a little easier to hold the air in my lungs this time. I remember the first scan they needed to do a few extra passes because I couldn’t keep myself from coughing. Now I simply passed back and forth through the circular passage a couple times, and then the machine powered down. I hopped off the table, pulled up my pants, and threw the sheet into the used linens bin. The technician came out to say the scan looked good and I was free to go. He was about my age, with tattoos on his arms and an obvious “rock dude” swagger. My age finally became of use in this place, and I managed to convince him to let me see my scan—for science!
It is important to note that the medical technicians, nurses, and janitors are legally not allowed to make any medical diagnoses whatsoever. They would be instantly fired (or worse) if they said anything like “looks good” or “uh oh”. But you can weasel your way into the computer room and have them show you if you tell them you’re only looking because you think it’s cool.
It was cool, but that’s not really why I was looking. I watched the screen intently as it zoomed through my body top to bottom. I saw my throat and vocal chords, then my lungs and heart. I saw a distinct white shape appear between my heart and thorax. It grew to the size of a small golf-ball, and then shrank away as the scan moved downward. When the scan moved upwards, I looked extra carefully at the lungs and didn’t see anything scary. Did that mean the Cancer was retreating? I knew better than to ask my new friend, and I thanked him for letting me see the scan.
I got the results at my next routine appointment with Dr. C. She came in as she always did and asked me how I was doing. I was here with just my mother, again. I felt like the walking dead and my whole body ached. I did my best impression of me coping well. I probably even smiled. She calmly flipped through papers in my medical file, which by now was at least three inches thick. After I was done bullshitting, she began to go over my CT results and where we were at.
“Well the mass has shrank about 75%.” I sat forward in my chair with excitement. “The treatment has been very effective. The metastases in the lungs are not showing up on the scan or the x-ray. We are doing great.”
“So what about the other 25%?” I asked, eternally optimistic.
“We are going to give you two more treatments of chemo.” she always spoke in terms of “we” and not “you”. “The we’ll do another CT scan to see if the mass shrinks any further. It could just be dead tissue, but if it’s not we may want to do radiation therapy.” If it was 2014 and not 2004, I probably would have had something known as a “PET” Scan, which would definitively rule on whether or not the Cancer cells inside me were still “active” or not. At the time the closest PET scanners were Hamilton or Montreal, and the waiting list was too long to be of any use to us.
So my chemotherapy ‘sentence’ was extended by two cycles; six weeks more fun fun fun! Now I was finally glad to be on short-term leave. There was no way I could have worked through any additional chemo. It would be tight, but my 16 weeks of paid leave would run out exactly four weeks after my 8th treatment. If I didn’t have to get radiation on top of that, of course.
Money was the biggest stress factor at this time. I was unable to work my day job, and also unable to take on freelance jobs on the side. I had one regular client that I only laid out two publications a year. I had turned down all other work. My wife was getting a steady salary, but when it all added up we just weren’t able to keep treading water for much longer. It wouldn’t have neen so dire if the back and forth with the company’s insurance hadn’t delayed things for so long.
By late July I had been out of work four weeks. The initial payment was being processed—finally—but I hadn’t seen a dime in almost six weeks. Our bills were all behind and we were starting to get those “friendly” phone calls from various creditors. If we didn’t get some money by early August our cable and phones were next. What would I do without my home improvement shows in the afternoons? This was becoming a real problem.
Almost nine weeks without any income from me and it finally happened. Just after my 6th chemo treatment I saw a deposit come into our account online. It was back-pay for the last 6 weeks (they didn’t pay anything for the first 2 weeks of my leave, because of reasons). I paid all our credit cards and the cable and phone bill, and I finally felt some stress leave my body for once. It felt good to not have to worry about something, even if it was just financial.
Alissa and I were basically just going from fighting to avoiding to just sitting in the same room not talking. Of the time she was at home, I would guess she spent two or three hours a day in the bathroom. She claimed she was just reading a really good book, but with only one bathroom and my compromised bladder it led to some awkward confrontations. That was probably the most we interacted on any given day. We didn’t talk about my condition. We didn’t talk about what might happen. We just didn’t talk about anything other than what was on TV or her day at the video store.
I wanted to talk about things with her. I felt such guilt for marrying her and then not being able to deliver on all our promises Then there was the anger; because I couldn’t even talk about what I was thinking with my own wife. She just didn’t want to address it. It was apparently my problem to deal with unless it made her look good to be the “supportive spouse”. She would slip into random fits of loving and kindness every once in a while, and I thought that was the “real Alissa” coming out through all the cloud cover. It was the Alissa I wanted her to be all the time, not the person she really was. I was really good at deluding myself by this point, though.
I guess this was around the time my panic attacks started. They would trigger whenever I thought about my treatments, or the Cancer centre, or smelled that “sanitizer” smell… or even saw the colour orange. That sickly dark orange colour would make my stomach invert and my whole body start to panic. Panic attacks for me were the complete loss of physical and mental control. Complete overload. Rapid breathing and heart rate but otherwise an almost complete state of catatonic shock. Frozen in place and terrified.
Lorazepam was becoming more of a crutch than a tool. One every night quickly became two, and then four was needed to really relax me. “May cause dependancy” written in the fine print, but it was pretty darn necessary at the time. I was asked by some why I never smoked pot during this time. I was almost 24 years old and I had honestly never taken a single puff up to that point. I was a “straight-edge”, right? No extra chemicals in the system was my philosophy. Of course, now I had all of the chemicals in my system. I didn’t want to add something else into that mix, I was “high” enough as it was.
I don’t think anyone ever specifically put a lit cannabis anything into my hands during this time. I don’t think I hung around with the right crowd for that. Either way it just never became an option or an opportunity. Perhaps it would have helped me a bit, but I don’t think any burnt plant matter could have helped me get through what I was going through. Maybe after, you know, for science. But now? No.
I had survived six rounds of chemo, and I had two to go. I was on the long road of trials, like in those Greek tragedies. I didn’t need any distractions as I plodded forward on my quest to not die. At least for now, I was just fine being “drug-free”. (and a bit of a self-righteous ass about it, if you knew me back then. Sorry about that.)