I Can't Sleep

Two weeks into taking steroids, chemo drugs, anti-virals, anti-nausea drugs and sleeping pills, after never taking any strong legal medication in my life, I was pleased that my body was coping so well. The only visible sign of my treatment was the red patch on my stomach which appeared within hours of receiving velcade. A potential side effect of the chemo drug cyclophosphamide was hair loss so I began a ritual of checking the shower drain every morning. But my hair wasn’t falling out – yet. That was a relief. I finally looked up thrombocytopenia. I couldn’t help it. It turned out to mean my platelet count was low, which happened with chemotherapy. That was it. This cheered me greatly. I suppose because it wasn’t unexpected and second it gave me a sense that the chemotherapy was actually doing its job.

      Feeling good and looking well, I accepted an invitation for the four of us to go to dinner at a friend’s house. I instructed my family that I was not going to tell the Hills about my disease. I had only been living with it for two weeks and I hadn’t come to terms with it myself yet. They agreed. But that night, instead of my usual witty conversation and understated demeanor the steroids turned me into a chattering monkey. I couldn’t slow myself down. By the end of the evening my face was flushed so red it was like I had lain on a beach for hours on the first day of summer with no sunscreen on. I began to think maybe steroids and wine and Drambuie were a bad combination. You could have cooked an egg on my head. At home, the girls fashioned me a hat from two striped tea towels covering a frozen wine bag (the icy bag you put around a bottle of wine to chill it rapidly). They tied it on with head bands. It stood about 15 centimetres (ten inches) above my head and teetered when I turned my head quickly.  It was definitely a Kodak moment and Charlotte took photos. I spent the next hour with the contraption on. The ice bag melted on my head but I still wasn’t cooled down. I hoped I didn’t interfere with my medication by getting drunk. It might have been a really stupid thing to do. The girls told me I didn’t sound strange during the evening so that made me feel better. I felt like I went from a caffeine crazed chatterbox to a drunken sunburn victim in a matter of an hour. My family thought I was pretty funny and when I saw the photos, for the first time in weeks, I laughed.

      By the middle of January my life had become a weekly routine of blood tests and hospital visits. I had a lab slip for a weekly CBC (complete blood count) and a monthly blood test which covered more things like liver function. After living with my disease for a month I was no less terrified. I still cried a lot, but no longer in front of medical staff.  My whole life had become about my disease. When the phone rang it was the hospital, when the mail arrived it was a new appointment. My family asked me how I was feeling every day. I had to quit my job and my social life was becoming non-existent. I woke up every morning and went to bed every night wondering how much longer I had to live.  There was always something that reminded me I was sick.

      On January 12^th the phone rang before 8am jarring me from a deep sleep. I was disoriented about where the ringing was coming from. Instead of grabbing the phone in our bedroom I ran to the kitchen. But I was wobbly (the sleeping pill had not worn off fully) and I knocked a framed photo off the wall in the hallway. It was a picture of my children when they were small. It hit the floor with a bang. The wooden frame broke apart but the picture and glass were okay. I was too late to answer the phone and I had to replay the message. It was the hospital confirming my doctor’s appointment for Monday January 16th at noon. It would be the first monthly anniversary of my diagnosis. The blood tests before the appointment would confirm whether the first cycle of anti-cancer drugs had any impact. Then the doctor would tell me if there was any point in treating me further. Was it going to be good news or bad? I was still tired, but now I couldn’t sleep.