I’m scoring each day on two aspects of how I feel. I’m updating these charts daily and then get automatically published to this page here:
- The human vs alien feeling: This is a combination of nausea and the weird vibrating brain scramble I feel in my head. They seem very connected for me, so to keep it simple, I just combine this into a single number to measure how much alien-ness vs normal do I feel in my head and gut.
- Energy levels: This one is pretty straightforward.
To simplify things and blend these concepts together, I create the chart below. This chart shows the number of days during the cycle that I feel normal or close to normal. This means I scored at least a 9 on human/alien scale, and I scored at least an 8 for energy level. The chart below shows the number of normal-feeling days per cycle:
I would definitely take fatigue over that alien feeling any day. The goal of these charts are to help me dial in my side effect management, exercise and sleep so I can figure out how to have the most days with a 9 or 10 score for both measurements. Another purpose of the charts is for those who may be going through the same chemo regimen (ABVD) to see at least one example of how things progress over time. Each person has their own experience, but I’ve only heard or read about the way one might feel in a given day in vagaries. When I asked if I could feel normal at any point over the next six months of treatment, I would often hear “Possibly, but the effects accumulate with each treatment so it can get worse over time.” From these charts, you can see that I’ve experienced anywhere from 3-7 “normal” days between infusions through treatment 4 so far. This is a very subjective measurement, but I like understanding things this way, and I figured there might be a few others out there who would appreciate this type of information.