The Belly of the Whale
And there’s a jealous net inside my chest
There’s a hurt and sadness there
Maybe I’d tell you all about it
I thought you’d care
- Sarah Harmer
(Capsized, All of Our Names, 2003)
The next few weeks were mostly the same as the first two cycles. I was back at work that Monday, sitting in my chair and trying to focus on the screen in front of me. Chemo sickness is like the worst hangover you’ve ever experienced, and it lasts for days. The eight different drugs were all working inside me like crazy mad bombers. Kill these cells, suppress that side-effect, make me not feel like barfing so much. It was a wonderful cocktail of pain and pain management.
The worst drug in my menagerie was “Prednizone”. It was the fourth member of my “CHOP” therapy, and it definitely cut me down (I’m really sorry about that pun). It was actually a type of stereroid taken as a pill for the first few days after each treatment. I think it sort of “supercharged” the other chemo drugs, but the result was my head was swimming. Basically take the world you see, tilt your head sideways about 45-degrees, and now go about your day. If you wear glasses, rub them with dirt/oil to simulate the foggy, distorted vision I was experiencing.
Doing anything pleasurable for the first few days of the cycle was basically pointless. I couldn’t focus on anything like a video game, and sex wasn’t even physically possible and actually hazardous to Alissa’s health unless I was using a condom. My whole body and its fluids were swimming with radioactive and poisonous substances. I spent my sick days in front of the television, mindlessly watching the images of home repair and remodling on HGTV. Somehow watching people improve their lives with a nice renovation made me hopeful that I was doing the same thing internally.
It was already May and after three treatments I thought I had the process down. With every treatment cycle, however, I was more and more fatigued and less quick to bounce back. My sick days and vacation days were almost all used up and still no word whether or not I would be getting disability leave through my work insurance. There was always the option of government medical leave, but it paid less and we were already falling behind financially.
Trying to maintain some sense of normalcy was easier as long as I was working. I had even joined the company softball team to get out of the house and do something that wasn’t related to my Cancer. Any opportunity to feel “normal” like any other young adult, especially if it was jovially referred to as “beer league”. I was welcomed to the team and I tried to play as hard as I could. To be fair, I wasn’t very good at baseball even at peak physical form.
Most games were very low intensity. When enough of us showed up to form a whole team, games were a mostly about drinking. Most of the players were younger married guys trying to get out of the house for a few hours, and I was no exception. Alissa and I were getting along on the surface, but underneath that crust of civility there were a lot of things left unsaid.
One game went above and beyond seven innings and beer when you got around to home. At some point in the game, one of my coworkers had lost his platinum wedding band in the outfield. It had just slipped off when he was removing his glove, and his wife was going to kill him. While some of the guys looked for less than ten minutes and fucked off home, I decided to stay until he left or we found the ring.
Hours went by without any luck. We even went to the nearest mall and I purchased the last two metal detectors at the electronics store. We were pretty sure they would detect platinum, and I even charmed a jewelry store employee to let us test our new hardware out on a few wedding bands. We combed over the field in the dark until almost midnight before declaring our search a failure.
I was so tired I don’t even remember how we got home. It must have been bus since neither of us had a car. Finding the ring was going to prove that I was still capable of affecting positive change in the world. My only memories of what happened next are how I felt. I had failed. I was a failure. I would not get another chance. The ring was gone. My legacy of saving this guy’s marriage would be another unfinished chapter in my abridged life story.
For almost three months my Human Resources manager had been fighting the insurance company on my behalf, trying to get me the benefits that would allow me to take some time off. She had used every tool and tactic available to her, and kept me updated as to her progress. They had agreed to give me prescription benefits early on, which was good because every three weeks I got another $300 loot bag of pills with my chemo party. It only covered 80%, but compared to zero this was a fantastic discount.
Medical leave, however, was another issue. They had denied me short- and long-term disability benefits because of my “pre-existing condition” discovered during my probationary period. Without those benefits the numbers just didn’t add up, even with government medical disability. Our financial situation was tenuous even before I got sick, now we were slowly sliding backwards. If I couldn’t work or get benefits, we would probably lose the apartment.
Imagine having moved out on your own to go to school, only to return after getting married and a great job in a growth industry. It was definitely not something Alissa was even considering, but I was the one who kept on top of our finances. She was never a horrendous spender or anything; she was mostly happy to have money for cigarettes and the occasional DVD box set of ‘Friends’. She trusted me to manage our budget to pay off our debts and get us the car and house that we planned for. Of course, all of that was on hold while I worried where the next credit card or cable bill would come from.
I needed to keep working for the rest of my chemo treatments, that much I was sure of. I needed the distraction to keep my mind off other thoughts. But after almost 3 months it was getting harder and harder to get to work at all, let alone my traditional 15 minutes late. My responsibilities since the launch of the new website had only increased, and I was letting all sorts of jobs slip through the cracks. My manager was fighting people off as best she could, but even she couldn’t protect me from the inevitable. I wasn’t going to be able to work through this.
Thanks to one of the best human resources managers the local tech scene ever saw, I wouldn’t have to work much longer. After months of letters and appeals, the insurance company decided to give me the 16 weeks of short-term disability in my original contract. They were not so generous with my long-term benefits, which they once again denied me coverage. It was a partial win, and that was enough for me to decide to take a leave of absence from work.
My fourth chemo cycle was almost routine, if one could consider that a good thing. Alissa was working and my Dad travelled regularly for his job, so it would be just my Mom and I. As I handed my red card over to the ward clerk, she took out my charts to look over my blood work. Before each treatment you had to get your white and red blood cell counts done. This is to ensure that you are healthy enough to actually receive the chemotherapy. If your white cells were too low your appointment could be rescheduled, resulting in a delay of treatment. It was critical to keep the maximum levels of toxins in my system for as long as possible to kill the Cancer.
“And I see you brought your wife with you again. How nice of her to support you.” The clerk smiled at my mother, who was equal parts shocked and flattered. She did look younger than most women her age, but did I really look old enough to be her husband and not her son? Did I really look that bad?
I shuffled over to the waiting area before I got called in to the abattoir down the hall. Two elderly women were energetically putting together a large jigsaw puzzle that must have had over a thousand pieces. I wondered if they started it themselves or were just moving it along during their time here. They seemed to be enjoying it, so it hardly mattered I guess. We sat in silence and I tried to guess which one of them was sick and which one was the supporter.
It was during this treatment that I started to notice when my nausea actually started to set in. Oddly enough it was well before they even finished putting the IV in. In fact, this was the first time the nurse didn’t nail it on the first try. The veins in my hands they had been using were starting to deteriorate—another fun side effect of the caustic chemicals being pumped into me. I was looking at the row of IV poles and bags going down the back wall of the treatment unit, and that’s when my stomach started to do belly flops. I was developing a pavlovian response to the mere sights and smells of the Cancer ward.
By the time the nurse had the needle in and the chemo drugs were brought over, I was almost throwing up. My body knew what these bags of liquid were going to do to me, and it was reacting violently. They gave me an anti-nauseant—right into the IV—and some Ativan to calm me down. I tried to relax and think happy thoughts, but all I could think of was how many CC’s of medication I had left before they would unhook me from this infernal machine.
Friday’s are by far the worst day to get treatment. Everyone wants to have the weekend to recover, and they are always at least a few hours behind schedule by the time I would arrive in the late afternoon. If my appointment time was 3pm, it was not unusual to be there waiting and getting treated until after 7pm. By the time I am dropped off at home my head is swimming and I can barely stand from fatigue. It wasn’t a choice at this point, there was just no way I could keep working through this.
The decision to leave work once I had at least some financial cushion was the easy part. I had only pledged to my employer to work “as long as I possibly could” but I remembered his words of advice. In the six months since my first contract I had seen people hired and fired for all sorts of reasons. I didn’t expect any special treatment, but deep down I felt like as soon as I was out the door someone else was going to come in and steal my seat.
My present status as an employee was actually quite good. I was the only graphic designer in the building, and I had also demonstrated that I knew more about HTML and CSS code than even the most senior developers. It was definitely beneath their skill levels and they were happy to give most of the front-end coding work to me than dirty their hands with such a simple markup language. My years of schooling and personal improvement had made me a valuable member of the development teams. I had finally “made it”, and now I was walking away from it all just because of a little Cancer.
I felt weak and powerless. Once word got out that I was going to be taking a leave of absence I was flooded with last-minute work requests. Occasionally someone would also enquire how I was dealing with everything, to which I almost invariably replied that I was doing fine, just tired. I was far from fine, but I wanted everyone to think that I was going to be back at full strength before they had a chance to miss me.
I don’t know if it was confidence or ambivalence, but I was tasked with finding my own replacement for the four months I was going to be away. I only knew of one designer that I would have wanted to hire. He was one of my closest friends in college, and a fair bit more creative and talented than I saw myself. However his coding skills were almost non-existent, and I knew if I suggested him that it would come back to haunt me.
I didn’t want to find a replacement that was better than me, but I didn’t want the person to completely fail, either. I wanted them to trust me, and if I didn’t find the right person I thought it was just another strike against me if and when I came back. On some level, I wanted to find someone worth of carrying the torch for me if I didn’t.
By the time my last day at work arrived at the end of June, the answer to my replacement came in the form of two people. My friend did end up getting hired on my recommendation, and they found someone to handle the coding duties that he couldn’t. It gave me a small ego boost knowing that it took two people to do the workload I had been handling, especially during treatment. I was reassured by all my superiors that I had a seat waiting for me when I got back.
It was company tradition to have lunch every Friday. Summer weather meant barbecue on the back patio, and I wanted to enjoy my last free lunch for a while. At this point I couldn’t even really taste food due to the side effects of the chemo. I constructed what looked to be a delicious stack of meat and condiments in a bun, but in my mouth it just tasted like eating old newspapers. I sat in the Sun and tried to enjoy the company.
The word had spread that I would be taking some time off, and some of my coworkers had gone and put together a “survival kit” of things to help me during my leave. The best gift of all was the $400 they had collected from everyone around the office. The bill money we didn’t have was now in my hands, along with enough left over to get a game or two to entertain me. It was one of the nicest things anyone has ever done for me, and I was overcome with emotions. I mumbled some gratitude to everyone as I tried not to cry in front of my employers and coworkers.
My final hours at work were spent getting the last few odd jobs off my desk, arranging and backing up my files and cleaning up my work area. Just before I left to go to the Cancer centre I was furiously trying to line up everything on my desk at perfect right angles like a German game show. I wanted everyone to think that I had everything under control, and as a result I almost missed the bus. I took one last look at my workspace, turned the lights off, and waved good-bye to my manager. A few people came out to give me best wishes, and I could only look down at the floor and mumble responses to save myself from breaking down in tears again.
That night as I was waiting for the chemo drugs to take me to Nausea Town, I tried to focus on the positives. For the first time since I was 14, I didn’t have to go to work or school. I didn’t have to do anything. All my doctors and nurses said to do was “rest and get well”. I made a list of activities and goals for my time off. I thought about doing some “bucket list” items, but I was still trying to be positive so I just decided to be as lazy as possible. I would sleep as much as I wanted to, play video games and watch TV.
It was the worst of times, but at least I didn’t have to be at work on Monday.