My Only Job is to Stay Alive

Odd things happen to your sense of self when you are very sick. You become completely egocentric. It is all about you and your disease. I remember talking on the phone to a nurse when it suddenly generated in me a momentary but overwhelming feeling of “star quality”.  I was supposed to get a velcade shot that day but my red blood cell count was low and the nurse rang to see how I was. I told her I was fine so we decided to go ahead with the injection. When I hung up I couldn’t help thinking that I was a little bit important, a little special.  I don’t know how to describe it. It was like for a brief time it was all about me, my needs, and how they were going to accommodate me. Normally you had to call a doctor’s office to make an appointment and were usually put on hold. Now the medical profession was calling me personally just to see how I was feeling. My disease and I had become the center of the universe.  Of course I would rather be well, but I was starting to get an idea of how a celebrity’s sense of self-importance developed and potentially skyrocketed. It was a weird mix. Outside the hospital I wanted to hide. But having the hospital staff be so attentive to my needs was a new feeling. I imagined them running around getting things organised because of me. I was the star of the show.

      Being sick was also justification for not doing anything all day. In my life, whenever I stopped working full time I always felt like I had to justify my time. Even when I was raising two children, I would give Alex a long list in the evening of all the things I accomplished during the day. He didn’t ask for it, I just felt like I had to give it. But being sick had allowed me an excuse for not accomplishing anything. My only job was to stay alive. When Alex came home in the evening he always asked “how are you?” If my answer was “fine” that was enough of an achievement for the day.

      It gave me a free pass to spend the days how I chose. I could watch TV or do puzzles, take a walk or a drive or sleep all day. The doctors backed my semi-retirement by confirming I shouldn’t be working, at least not in the germ-filled world of day care. But being unused to this lifestyle of no responsibility I had frequent attacks of guilt. If I turned on the TV during the day or did a puzzle, I looked over my shoulder, even in my empty house. If I slept in late I cringed that I had wasted half a day. It never felt right that I was doing nothing while the rest of my family was working or studying. Reading the newspaper on-line or skyping seemed a more discerning way to spend my free time so I deferred to these activities. At least they felt a little more discriminating than watching episodes with the ironic titles of Survivor or Glee.

      For about ten weeks after my July transplant I was off of all the hard drugs. The constipation and indigestion were gone and the velcade “bruises” faded away. The paranoia disappeared. I navigated away from my “regret page” and tried to just be happy I was still alive. Once the steroids were out of my system I was calmer than I had ever been in my life. Now the conversations were kind of like this:

      “Mom I need money.”

      “Sure Abby, would you like our retirement savings?”

“Honey I have to work late.”
“Goodness Alex I hope you’re having an affair, you work too hard.”

      “Mom I crashed the car.”

      “No problem Charlotte. Look I made brownies.”

      That’s probably the weirdest effect of cancer. When you’re not on mind-altering substances you become a saint. You forgive everyone, you smile a lot, you actually smell the roses and you bake things. No kidding. I must have baked dozens of coconut and white chocolate muffins in a few months. You also become a philosopher. You invent theories about the universe, like THE BIG GIANT FOOT (website pending) and more personally, the meaning of your own existence. You immediately want to write your memoirs so there is some trace of your existence left behind. You hope it may be of interest to a great grandchild who will dig it up out of a chest in a dusty attic and for a moment bring you to life again.

      Those are the weird effects on the cancer sufferer. I cannot begin to imagine what weird effects my illness and behaviour have had on my family. Their patience and ability to accept whatever changes I have gone through must be acknowledged. They forgave me for all the crass comments, for all the “poor me” soliloquies and for all the times I just didn’t want to do anything. A hug and kiss to them all.