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I haven't posted lately for two reasons: (a) I haven't felt well enough to write and (b) I haven't been sure what to say because my feelings change a lot from day to day. However, I'm feeling better physically (knock on wood) and I hope my emotional state is stabilizing.
I had chemo two weeks ago. I felt fine at first. I went to a basketball game with friends. I went out dancing. But then the fatigue hit. For about five days I was too tired to think clearly, carry on a conversation, read, write, or enjoy anything. All I wanted to do was lie down and rest, but when I did I didn't feel any better. I just felt pathetic and like I was a burden to my caregivers (my partner Grace and my mom Kathy). I also felt sad and cried a lot. I wasn't in any serious physical pain; I was just discouraged. In retrospect, I think I was grieving the realization that my current situation, which is not great but still above the acceptable quality of life threshold, is not sustainable and that my current course of treatment is not going to work much longer.
Finally the fatigue lifted enough for me to make some decisions: 1. I am going to try to return to my job and 2. I am postponing further chemo, perhaps indefinitely. I will discuss each decision further below.
1. I am going to try to return to my job. I need some structure, schedule, goals, and way to feel productive. I miss teaching, my colleagues, the students, and the intellectual interaction and challenge. I find that even though I often feel like doing nothing, I feel better if I do something. As some folks have said to me recently, sometimes you have to spend energy to get energy. It reminds me of Newton's laws of physics: a body at rest tends to stay at rest, and a body in motion tends to stay in motion. Our spring quarter starts at the end of March. Obviously I don't know how long my health will allow me to work, but I am going to assume that I will be able to teach through the end of the quarter, and hope for the best. I have received wonderful pledges of support from my departmental colleagues.
2. I am postponing further chemo, perhaps indefinitely. I was scheduled to have chemo this week, but I postponed it until next week, and I may choose not to do it at all. I have friends visiting from out of town this week - my best friend since 5th grade Eric (an author: redroom.com and his lovely wife Meredith and then my friend Hannah (an artist: hannahhenry and her son Henry - and then my dad will be here next week. I would like to be able to enjoy their visits without the chemo fatigue.
I also feel that the cost/benefit ratio for chemo is changing for the worse. Specifically, the cost in terms of fatigue and other side effects is gradually increasing as the toxicity accumulates in my body and the benefit in terms of controlling the cancer is gradually decreasing as the cancer adapts to the chemo. My CEA (a blood marker of cancer activity) has doubled in the past month and my bone pain has crept upward, requiring me to use more painkillers. As I mentioned in a previous post, I prefer the pain to the fatigue because the pain, at least at its current level, is controllable and I still feel like myself, whereas with the fatigue I feel like an empty shell of myself. If the pain increases it may become uncontrollable without sedation into unconsciousness, but I'll cross that bridge if we come to it. Actually, my partner Grace may have to make that decision, as she has power of attorney for my health care decisions if I am incapacitated.
Speaking of end-of-life health care decisions, I saw this guide recently that I thought was a good basic overview: Advanced_Cancer_Care_Planning
