November 26th, 2008: It’s been difficult for me to remember that the chemo is still a very active in my system. For example, my hair started falling out two weeks after I was unhooked from the infusions. More insidious has been the onset of fatigue in my life. Tuesday the 25th and Wednesday the 26th of this week have been crippling for me because I’ve had no energy. Tuesday it was so extreme that I simply couldn’t go in to the office. I was able to work from home, but the effort to get out of bed astonished me. The missing piece is that I keep forgetting that the chemo has set of a chain of events that I largely don’t understand and certainly haven’t learned to account for. What I’ve learned in the past few days is that my body’s struggle to slough off the dying cancer cells is just one of many unprecedented events that are going on simultaneously. Red blood cells are also dying. Ditto white cells. Other fast growing cells are also being killed off, and in the meantime, my body is laboring to keep life sustaining functions going. I’ve tried to imagine a suitable metaphor. Is it like being in a row boat on the surface of water that is roiling underneath? Is it like flying in a small plane through a major thunder storm? Maybe, except in my case the turmoil is internal rather than happening on the outside.
In therapy on Wednesday, I spent half the hour weeping because I was so confused and overwhelmed. That served me to realize that I am entering new territory, and I don’t have a guidance system to direct me. These guidance systems exist. Millions of people have gone through chemo before me, and the general effects have been duly charted. Right now, my largest problem is a lack of information about what to expect. When I’ve talked to people who have gone through chemo or people who have witnessed chemo in others, they are much more matter of fact about my experience. “Sure,” they quickly agree, “It’s the chemo.” I find this very reassuring, because it moves my frustration and disorientation into the realm of the normal. I don’t understand what’s normal anymore. I can remember what normal used to be, from the days prior to chemo. But what can expect going forward? And what are the compound effects of several chemo sessions?
There are a couple of solutions that I intend to use. (1) Ask medically astute people in clinic and in the hospital about the effects of chemotherapy over the period that I’ll be taking it. (2) Join a sarcoma support group so that I can hear from other people what they are going through as well as have a forum of listeners to my experience. Going through this blind and unknowing is not good for me. It’s one thing to be exhausted. It’s another to be exhausted and not know why. I spent the last two days enduring the latter.
Small favors category: for the first time since I started shaving, I don’t have to do that every day. I can’t say that my beard has fallen out; it’s still there. But its growth is so diminished as to not require trimming for five or more days at a stretch. Lovely! I’ll take that time out from responsibility.