the relativism of feeling good

In one of the classes I took on assessment, my professor started out the class by telling us that tests are dumb. Sort of an interesting way to start a semester completely on assessment, huh? So why am I taking this class if tests are so dumb? But he didn’t mean that tests are useless, he meant that any test can only tell you a very limited bit of information, without other data to give it context. So you give someone a test of depression, and find that s/he has a score of 5 out of, say, 10, well that 5 is just a number. The number becomes more meaningful when you gather more information and find out all the things that might be affecting the score, and maybe that just last month it was a 8 out of ten. Now all of a sudden, the 5 that looked moderately depressed before, now looks inidicative of someone whose mood is improving despite obstacles, or maybe due to supports. So it’s all about context, and in isolation, tests are dumb.

In my own geeky kind of way, I’m reminded of assessment a lot lately. Maybe because people are always taking their informal subjective measures of me: “How do you feel? How are you doing?” And I find that my answer generally has much less to do with how I feel that given day, but I how feel in relation to how I’ve felt in the past week. So if you ask me today, I’ll probably say that I feel great. Actually, my stomach is pretty unsettled. Maybe a 4 out of 10. I have a headache I can’t quite shake. My bones are a little achy. I had to take a short nap earlier. However, compared to the past few weeks? I’m fantastic! I was able to go into school today for a really satisfying, thought-provoking, and validating supervision session. I’m still fresh from the memories of spending several hours with some of my oldest friends/favorite people yesterday. I wasn’t in bed all day. I’m in no danger of throwing up. I haven’t had to take any medication, and I have been able to eat normal food for the past few days. So all in all, I’m great. I’m acutely aware, though, that had I felt this way six months ago, I would’ve said I feel like crap. It’s amazing how powerful comparison can be in our perception of how we feel.

The trick to enjoying these moments of improvement, though, are not spending too much thought on how transient they are. Tomorrow, I have my third round of chemotherapy. Which likely means that for the rest of this week, I will be feeling pretty poorly, by any account. But especially in comparison to how I feel today. My anxiety about the rest of the week constantly threatens to rob me of the joy of today. So my constant battle is to remember that if someone were to give me a measure of how I feel in say, two days, that measure is dumb. It only gives information as to how I feel that day. Not how long the feeling will last, or how dramatically I might improve within a week. The trick is to not get caught up in any one day of how I feel, but to let myself experience each day for what it brings, and remember that no matter what, it will change.

Round One

This is what chemo has felt like so far:

Day of 1st Chemo (I’ll call it Day 1): Mouth feels weird by the end of the treatment, can already feel the metallic taste in my mouth people talk about. I get nauseous fairly soon, but have an arsenal of drugs to deal with that. By the end of the evening, an episode of Friends is far too much for me to keep track of, and I just want to sleep.

Day 2: Between naps induced by nausea meds (which make me sleepy), I actually feel pretty good. I start plans to create an app to track everything. This will be comprehensive! It will help so many people! I will track which drugs I’m getting at which doses, what my nutritional intake is, how much I’m sleeping, how much I’m exercising, what symptoms I’m having, whatever else I’m doing for self-care, etc. This will enable me to graph my progress, and estimate what makes me feel better, and when to expect to feel worse. Why doesn’t this exist already?

Part 2 of Day 2: I’m tired. The app can wait.

Day 3: I’m not even actually sure what an app is right now. I certainly couldn’t make one. I just want to sleep. Taking Miko to her therapy appointment is the big activity of my day, and it wipes me out. Who needs graphs to map my progress, anyway? I feel like crap. Graph that.

Day 4: Feel a little better, but could sleep all day. I drag myself to the very end of Miko’s end of the year performance and try to act like I can engage in civilized discussions with others, but actually I’m just tired and emotional. And I just want my brain back, since it seems to have taken a vacation.

Day 5: Sort of like Day 4. Maybe a little less nausea. Maybe a little less tired. Still no brain function, still lots of emotion.

I’m hoping this day marks an upward swing, and I’m over the worst of this round. Because while it hasn’t been untolerable by any means, people say the effects are cumulative. Meaning, next time could be worse, and I could really use a reprieve before that happens.