Chapter 5
The Crossing of the First Threshold
“I’m gonna fight ‘em off
A seven nation army couldn’t hold me back.”
- Seven Nation Army
(The White Stripes, Elephant, 2004)
The morning of my first chemotheraphy treatment was cold for April. There was snow on the ground from a few days before; Old Man Winter’s final middle finger of the season. The muddy slush filled the streets outside our apartment as I headed to work a half day. Everything had been carefully timed so that I could miss as little work as possible, until my insurance issues had been worked out.
As I sat in my manager’s office, we went over any last-minute items I had to take care of. It was just like before going on vacation, except I was not going on vacation. We sat for a while, chatting. She had the supportive air of a big sister, and she was both sympathetic and encouraging. I was glad to have someone like her in between myself and the Boss Man. Everything was set up so that my presence wouldn’t be missed for the next few days.
I spent the morning pushing out a collection of banner ads for various online sites. I worked methodically through the various sizes and file requirements, and for a little while I was able to be a normal, 9-to-5 grunt, working for his daily bread. When I had finished outputting all of the files, I sent them on to my manager to spread them around the Internet. My mind returned to the afternoon’s appointment.
Just before lunch I started to clean up my desk and arrange my files into something resembling order (i.e.: 90-degree angles). I would be back on Monday, but I somehow felt the need to make sure my work was sensible to others should I not return. I wanted them to think that even though I was gone, I was still able to make meaningful contributions to the company.
My Dad picked me up, and we set off to the hospital. His job as a sales force manager took him all over Ontario and Quebec, but he made sure that he could be in Ottawa today. We talked about my expectations for the treatments and I did my best to be optimistic about my outlook for a few minutes.
My “cycle” was three weeks. The first few days were supposed to be the worst of it, so I planned out my remaining sick days such that I would take two or three days off per treatment, usually coinciding with a weekend. This way our finances wouldn’t be affected unless I stopped working entirely.
I walked up to the reception desk and handed my red card over, as a solider reporting for duty. To my chagrin, I had been transferred. I was told to go to another section of the hospital for my treatment. There was construction in the Cancer Centre itself. I would have to wait to see what the newly completed Cancer Treatment Ward looked like.
The room I was directed to was like any other hospital room in any other ward. It was a few floors above ground, and the day was sunny and bright. My Father and I stood around talking for a few minutes before Alissa came in. She was incensed by the change of venue. She took up her position in a chair beside the bed and I started playing a game on my laptop. A young man in a white coat came in and introduced himself as a pharmacist. He was here to go over the drugs that would be put in my today, their side effects, and the various risk factors for each of them. I wasn’t very engaged in the conversation as I tried to solve my digital puzzle. I think he was there for about half an hour, detailing about a dozen different medications.
The main brew of drugs I would be receiving was known as “CHOP” therapy. This apparently stands for: Cyclophosphamide, Hydroxy Doxorubicin, Oncovin and Prednisone. All those letters and they come up with a verb used by axe murderers. Doctors are really good at picking comforting names for things.
I would be injected with three of them today, and the fourth one in pill form to take home in a goodie bag. If my Mother had been there, she probably would have taken meticulous notes. Unfortunately due to some uncooperative coworkers she was unconventionally late. As he began to list the various side effects, it sounded like the worst commercial disclaimer ever.
“…….heartburn…..” “….fever…..” “…blurred vision…” “white/red blood cell loss” “….blood clots…..embolism….brain…..” “constipation” “…migraine….insomnia…dizziness…” “…hair loss…” “…..heart failure….” “….water retention…” “mouth sores”
I don’t know why they bother to try to educate patients on the side effects of chemotherapy. The guy should just walk into the room and say “You’re fucked!” and run away laughing. Under side effects just list “All of them”.
After explaining all of the risks associated with chemotheraphy, I wondered why we didn’t just leave it up to the Cancer. That’s when I started to see the entire medical industry in a completely different light. They weren’t here to make me better, they were here to kill the Cancer—and if I was lucky—not me. It wasn’t about “health” it was about outliving the death that was inside of me. They were going to put enough poison in me that I could actually die from the treatment. I always thought chemotherapy was a “wonder drug” that saved people’s lives. The reality was that the medications were like giving a homicidal maniac a bomb and hoping he blows up only other maniacs.
I was not only not in control of my own body, I was beginning to doubt whether or not the doctor’s were. This is really the best thing medical science can come up with? Sure it kills the Cancer cells, but it also kills hair, blood, sperm, and all kinds of other GOOD cells. What is this, the dark ages?
The pharmacist continued to outline the medications that would be used to counter some of the side effects of the chemo drugs. He produced a small yellow pill and explained that it was called “Zofran” and it was one of the most powerful anti-sickness pills available. I would only need three per treatment and that turned out to be a good thing; each pill was $22. My pharmaceutical salesman Father was even a bit surprised at the price of those.
In addition to traditional over-the-counter medications that counter constipation, I was given some industrial-strength options. One was a brown pill called “Senokot”; it actually looked like shit. I got a viscous orange liquid called “Lactulose”. He warned me not to take it “unless you were going to be sitting on a toilet in the next half hour.” Powerful shit.
Then there were the sleeping pills. More than one of my medications were apparently notorious for causing insomnia and restlessness (because I didn’t have enough of that already). He gave me a bottle of tiny white pills labeled “Lorazepam”—hey I actually knew this one! It was my new friend that had helped me forget my troubles when the cough was at it worst and answers were still a long way off. Now it would help me get some much needed rest when my body was at its lowest.
He put all the medications and information papers into a small brown bag. The total cost for these pills was over $300. I was still two weeks from the end of my probationary period; I would have to pay for this one out of pocket. We thanked him for his helpfulness. He wished me luck and went on his way; probably to deliver more expensive drug regimens to other patients.
My mother came in shortly after the pharmacist had left. She was frazzled by her coworkers’ unsympathetic behaviour, but I told her it didn’t matter now that she was here. I tried to outline what had just been explained to me, but I could only remember the various red flag warnings and high-risk side effects. She went down to the pharmacy to get me a dossette; one of those plastic containers that divides pills by time and weekday. I thought those were just for old people that couldn’t remember their meds. She got me the one with several compartments for time of day, so I could remember to take some with breakfast, some with dinner, and some before bedtime.
After what seemed like far too long, a nurse came in to start. I had never had an IV put in before, but I had given blood dozens of times so it wasn’t much more traumatic.
She hooked up all the various hoses and leads, and then I was injected with a very small needle directly into the IV. One down, four to go. Next, she brought in an IV bag of bright orange fluid. It looked just like the concentrated “orange drink” syrup you get for large parties. This was the one that was going to make my pee change colour, which was both fascinating and terrifying.
“Don’t hold your pee too long if you don’t have to,” said the nurse as she engaged the pump machine. “This stuff can really burn up the walls of your bladder.”
Everything they told me was either bad news or scary. I didn’t feel anything yet. I asked her how soon it would be before my hair fell out.
“It usually happens about three weeks in.” she said. “It will be sudden and terrifying.” Something else to look forward to.
While the IV bag slowly emptied its corrosive cargo into my body, I was playing my game and passively participating in conversation. The man next to me was on his last treatment, and he was detailing some of the harder points of treatment for him. He looked to be in his 60’s yet he spoke with an enthusiasm that made me feel old. Other than the IV bag in his arm you really couldn’t tell he was sick. If he could get through this unscathed, what was I so worried about?
The first treatment was actually not the worst experience ever. After all of the shock and awe of discovering that I had Cancer and learning about the months of treatment ahead of me, to actually sit in the hospital and receive chemo didn’t seem that bad. All of the side effects were, of course, hours off. But I didn’t know that at the time. For the moment I was just sitting there watching my game and listening to the sound of the various machines buzz and ding around me.
The longest part was the large bag of clear fluid (the “O” – Oncovin, or vincristine). This one seemed to take over an hour, and at several points during that time my head started to ache like I had just eaten too much ice cream. My sinuses and frontal lobe puffed up and burned cold, like taking a deep breath outside on a freezing cold day. The nurse came in and turned down the speed of injection, and the burning subsided. Another eternity later, they unhooked me from the infernal machine and sent me on my way.
On the way home we stopped to get some groceries for the next few days. We stocked up on all the usual things for illness like ginger ale and crackers. I grabbed a few luxury items like cola and chocolate. Alissa bought some cigarettes. My dad dropped us off at the apartment and we headed upstairs. That was when the nausea started.
I wanted to immediately lie down, but I remembered what the nurse had said about my bladder so I went to the bathroom first. It definitely felt different, and when I looked down the stream of urine coming out of me was bright orange. Not just a bit orangey, I mean like bright fucking orange. The combination of alarm and illness pushed me over the edge, and I threw up for the first time as a chemo patient.
Alissa came up after her smoke; she had started smoking outside in front of the building a few days ago. She asked if I was feeling okay, and I told her I had just puked while pissing orange. I took my medications for bedtime and stumbled off to bed. As soon as I was lying horizontally, the world started to rotate around me. Gravity became indecisive and I spun around as if the bed was a carnival ride. I couldn’t concentrate on anything in particular, it was all coming too fast. My medications, my treatment plan, my chances of survival. I wanted Alissa—or anyone—to come in and comfort me, stop me from spinning off into space. I eventually fell asleep, the world rotating around my closed eyes.
***
The first few days were all about learning new boundaries. Things that I used to consider trivial—like going to the bathroom—were now huge obstacles. In fact, my body reacted differently in almost any given situation. I couldn’t eat the same, I couldn’t sleep the same. I couldn’t even walk the same. I had no less than twelve prescriptions; some I take after chemo, some before, some all the time. I had four lines of defence against nausea and digestion issues. It’s was a long week of figuring out what works and what doesn’t and trying in vain to settle into a new routine.
I spent most of this recovery time trying to relax in front of the TV, which was basically impossible considering the drugs I was on also caused restlessness and aching joints. I couldn’t concentrate on anything, either. It was like my whole world had been turned to the side about three degrees. My vision was slightly fuzzy, too! It seemed to be caused by the fourth chemo drug, the Prednizone. I tried to make the best of it, but to be honest daytime television sucks and I didn’t have the brain power for most video games.
The one thing that became very apparent is that I was no longer in control of anything. I didn’t like that and I wasn’t ready to accept it at the time. I was pretty much an existentialist; I had always been able to control myself and my life and figure out the cause and effect in any given situation. If I have a migraine headache or stomach cramps, it’s probably because I ate or drank something I shouldn’t have. Now I struggled to maintain the most basic daily routine, and I found myself losing the more I tried.
One perfect example of this was my bowel behaviour. I had always been a pretty regular person, and I had never felt constipation on this level before. Unfortunately, my regularity was being affected not only by the chemo drugs but by some of the pills to counter the side effects of the chemo drugs.
The morning of the second day without pooping, I decided to try the orange-flavoured fluid in the large white bottle. I swallowed hard and laid down on the couch. Sure enough, less than thirty minutes later I was running to the bathroom as fast as I could. I will spare you the gory details, but I spent the next two hours having a most extreme evacuation of colonic proportions. I would try the small brown pills next time and see if that did the trick without the screaming and panic.
The pain in my chest was terrifying. It felt like someone was sitting on my chest all the time now, but there were new sharp pains all over my body. I had no idea what was going on and I was so fixated on the “blood clots” the pharmacist had mentioned that I ended up in the Emergency Room. I have never gotten through triage and into see the doctor so quickly as when I said “I’m a Cancer patient, and I’m having severe chest pains.” Three hours and a chest x-ray later, I learned what heartburn and anxiety do to a person with Cancer in their chest. Ranitidine and Lorazepam and I was on my way.
This was only the beginning. The first treatment was never the worst, it’s almost always a few treatments in that you really start to be affected by it. I was going to get as many as seven more treatments over the next 23 weeks, and I doubted that I’d be able to maintain this pace for very long. Short Term Disability was definitely going to have to be used, assuming I even qualified. If the first week was any kind of warning for what was coming over the next six months, I knew I was in a lot of trouble if my coverage was denied.
After a few days my head began to clear, and the world re-aligned itself. I still couldn’t focus a thought but that was nothing new. I made up my mind to get back to work and get as much accomplished as possible. I was going to be like that old guy in the hospital room: confident and unshaken. I put my best fake smile on and tried to not think about the road ahead. I just kept putting one foot in front of the other. How long would that last?
My return to work was unceremonious. My salad dressing container had leaked while I was on the bus and I smelled like greek dressing. I had only technically missed 2.5 days and my manager made sure that I wouldn’t be missed during that time. I still had my hair and I didn’t look or feel that sick. The morning of the following Monday I was back in her office, plotting out my deliverables until my next treatment in two weeks. She was very compassionate, and we had a very low amount of pressure from on high for the moment. I was mostly just doing banner ads, and once you have the concept done you can just space out and format the rest. Spacing out was becoming my default setting.
As for outside of work, I didn’t get up to much. You’d be surprised how having Cancer can polarize your personal network. Many of my friends were very supportive and told me all about how they would be there for me and anything I needed. All bullshit. Some of these people I had known since High School. I had bands, relationships, with these people. Never seen or heard from again.
Other friends didn’t know what to do or say, they just wanted to be supportive. They took the time to listen and gave me the same “if you need anything” speech, but they actually meant it. There were only a handful of buddies that stuck around for the long haul. Among them was Josh, my work friend, and Darryl, an old friend of Alissa’s from back home. We had quickly bonded the first time we met, shortly after Alissa and I had moved in together.
At the time, he was still in school in London. but taking internships in Ottawa. He never let anyone give in to their own whiney bullshit, and it was one of the best things about him. Among his other qualities was the ability to make anywhere he was the coolest place to be. It wasn’t any particular confidence or charisma—he just has this ability to have fun in any situation. This made him the best and worst person to be around. Did I mention he also introduced me to excessive drinking?
I was in no shape to consume alcohol during the first week of treatment. By the middle of the second week—about ten days in—my appetite finally started to come back. Before that I had consisted on a diet of lemon water (like water…with lemons) and salted crackers. When Darryl took me out during the third week, I was not only hungry, but I was thirsty. He took me for all-you-can-eat wings at the finest establishment we could afford. Hooters.
(In our defense it was $9.99 all-you-can-eat wings, and the view was merely added benefit to cheap wings.)
I was never a big beer drinker before this. I had only really started drinking in earnest when I was 20, and three years later I hadn’t quite graduated from Hard Lemonades to real alcohol. I couldn’t tell if it was the heartburn or the tumours around my esophagus, but something in the back of my throat was like “Dude, beer me.” To everyone’s shock and amazement I ordered a pitcher of IPA from the bubbly brunette waitress. Gentlemen, let’s fucking do this.
In a situation like mine, sometimes it’s really the smallest things that can distract you. In the course of a few hours a few of my friends would consume an inordinate amount of chicken wings. I wasn’t a big eater but in their presence I felt compelled to at least make a show of it. Most of them were able to put away five or six dozen, and I was able to chow down four dozen and almost a whole pitcher’s worth of beer. For a few hours, I was just another loser eating chicken wings, drinking beer, and staring at…the scenery…
***
The morning of my second treatment, there was a buzz around the office. Everyone was to be an “all hands” meeting later that day in the boardroom. No word of what was to be announced. We could be the next big .com or we could all be fired. I was new to the “start-up grind” as it’s known, but it was eerily similar to the last dozen or so medical consults I’d had. Let’s just go into the big, poorly lit room and see what the man says.
Disney Land.
The company had such a great year that the Boss Man was going to send the entire company and their families to Florida for an all-expenses paid vacation.
To Disney Land.
For a second I was completely overwhelmed. This guy wasn’t scary he was awesome! He was rewarding everyone’s hard work with a free vacation! Then I sank into my chair as my dwindling white blood cell count popped into my head. What was it my doctor said about flying and public places?
With almost no immune system the last thing I needed was to get on an airplane or go anywhere with large groups of people, especially children. Flying to Disney Land got a very resounding “HELL NO” from just about everyone I asked for approval. Only Alissa supported the idea, but in then end I did the “safe” thing and politely declined the trip.
Disney Land would remain in my “not done” list. What else would I miss out on?
***
My second treatment was much more “relaxed” at first. I knew the four drugs that were going into me. They spelled a horrible name (“C-H-O-P”). The IV went in easily and the first two drugs were in me fairly quickly. My mother and father were having pleasant conversation and I think we were actually enjoying each other’s company for the first time in ages. Alissa was standing next to me, holding my hand and rubbing my hair. At the time, it was just your average mop about 2-4 inches long. All of a sudden, she recoiled.
“Your hair. It’s…” she just held her hand in front of me. It was full of my hair.
I reached back and grabbed a clump of hair. With no effort, I pulled the entire tuft out in one yank. I held it in my hands for a minute before I let it fall in front of me. I pulled more hair out. It was absolutely painless and coming out in as large clumps as I could grab. I was equally horrified and amused.
We added “buying hair trimmer” to our list of things to do in what I hoped would be a repeated “not totally fucking sick” period for the first two hours after the treatment. You’d be surprised what you can pack into a couple hours when you know you’re going to be bedridden for the next 24–48 hours.
That night when we got back to the apartment, Alissa finally agreed to stop smoking in the apartment. The rooftop patio wasn’t open yet, but you know she was just good enough to go downstairs for a few weeks. I cut open the plastic packaging of the electric hair trimmer and sat down in the middle of our dining room and shaved my head of what remained of my hair. You can wait to go bald, or you can do the dignified thing and just avoid shedding on everything and everyone for a week. I never liked my hair, it never really did me any favours and I wasn’t sad to see it go. I thought about people who really liked their hair, like my wife. How would she react to losing her own hair? How would I?
I swept up my hair just in time to take my first anti-nauseant and batch of sedatives for bed. I passed out before the sickness had a chance to take hold of me, and I was happy to sleep out the first few hours of my sentence.
***
It was all about adapting to the new routine. After two complete cycles I had a fairly good idea of what to expect. Every three weeks I would go from “fine” to absolute zero and then slowly crawl back. The first week was bad. Nothing was right, mentally or physically. The second week was bearable. The third week was actually kind of “normal” other than being basically on a permanent hangover. I thought if I just maximized my sick days, holidays and weekends that I could just barely make it to the end of the chemo treatments.
A friend at work had heard about my not being able to go on the company trip. He was getting married that weekend, and thought his new marriage would go smoother if he attended the ceremony as planned. He also politely turned down the trip. When I returned to work mid-week, he was kind enough to invite me and my wife to his wedding. It was where Alissa and had planned our “ultimate dream wedding” and probably my favourite place in the entire region: The Museum of Civilization in Gatineau (or “Hull” as it was known then).
The morning of my third treatment was coincidentally the departure date for the company trip. My office at the time was in just the right spot to enjoy everyone waiting for the airport shuttles and chatting about how much fun they were going to have. A few of the people milling about outside my office were kind enough to wish me luck on my third treatment. I told them to have a great time for me and bring home lots of stories of how drunken Canadian developers defiled the Magic Kingdom.
The third treatment went mostly the same as the first two, except this time I had no hair and one less supporter. Alissa was a full-time manager and we couldn’t afford to have both of us missing so much work. Since I was the one getting injected with chemicals she would go to work. My Mom and Dad sat and had polite conversation about the weather and my good spirits. I was happy to be able to work during my treatment and grateful to be working somewhere I was willing to work through Cancer for.
As the third part of my therapy entered my veins, the feeling of brain freeze started to ramp up like it had the first two times. This time, however, the pain was much more sudden and acute. It was as if my body was reacting stronger now that it knew what the drugs were going to do to it. The nurse adjusted the IV drip and the pain abated. As I stared at the machine pumping away, my stomach started to churn in time. I looked down at the floor and tried to tune in to my parents’ voices.
The hardest part for me during this time was the numbers. I found it hard to avoid doing the math for how long I would be at the Cancer centre. I used my previous treatments as baselines and estimated my time based on the number of nurses and patients, the amount of fluid going in to me per hour and the time to clean me up and discharge me. The new flow rate was going to add up to an hour; I sank further into the padded salmon pink chair and tried not to think about anything. More numbers swirled in my head, trying to find some mathematical equation that would get me out of here sooner.
***
Less than 72 hours later I was getting ready to attend my co-worker’s wedding. I was putting on my “omni-suit” (the one suit I owned and therefore used at job interviews, funerals and weddings) and watching Alissa get ready. It was a rainy May afternoon and she wore a very formal black dress that complimented her red hair. She had it professionally dyed and styled by a friend. She was wearing just the right amount of make-up to accent without dramatizing her features.
I had hoped we might have some “marital relations” this evening, but my stomach, head, chest and everything else were already advising me against any more physical exertions beyond sitting up right and not vomiting. She looked beautiful, and almost always wanted me after a few drinks. Of course, it wasn’t really up to my mental desires. I knew my body wouldn’t physically perform even if I’d wanted to. I decided to try to enjoy the evening in good company and go home early.
We had a short cab ride from our apartment to the Museum, and we went down to the waterfront to the tent for the ceremony. Afterwards we were taken inside to the largest hall (the gorgeous one with the totems and huge windows) where we were presented with the open bar. I was told that I should under no circumstances consume alcohol right after treatment, and my stomach didn’t need any more reasons to hate me. My wife had it covered, however, and made sure to drink for the both of us.
Of course, by dinner time she was basically shit-faced and barely standing herself. Three drinks was all it took to get her pretty intoxicated, and when she started drinking other people’s drinks and demanding I get doubles, I sort of knew where this was going. The “Fun Alissa” that I once delighted in had now become a liability at a co-worker’s wedding. Maybe if I’d been drunk I wouldn’t have cared. Luckily the dinner and dancing portions of the evening went by without any incident from either of us. We must have been quite the amusing couple to our table, but everyone was having a good time.
The more Alissa drank, the more she wanted to drink and dance. I was basically like a 60-year old man trying to date a girl his granddaughter’s age. Following her around with glasses of rye and ginger for her and regular ginger for myself. By the time the dessert buffet was brought out I made it clear I was looking for my bed. Then her face turned on me and she huffed about wanting to dance more. I sat at my table alone and watched her dance in that great black dress and beautiful red hair.
I understood why she wanted to stay, and I decided to stay until she wanted to leave. When she had danced her fill around 11pm we stumbled up the escalators to a cab. I wasn’t sure who was in worse shape but I knew who had drank more and had more fun. It was a challenge to get her into bed, even. I don’t even remember undressing her or myself we just collapsed and passed out until late the next afternoon.
It was almost like old times, except it wasn’t at all.