There is lots of talk about so-called “chemo brain.” However that talk seems somewhat vague and undisciplined on all sides.
I suspect that part of the reason may be relative lack of metrics, at least other than self-reported ones.
I propose that in today’s social media world, we are all constantly generating data about our level of engagement with the world, and that that data can easily be collected and built into research and treatment.
I have been on Revlimid, and felt in a fog. The fog seems to be cleared four days or so after ending the 21 day “on” cycle. I am unlikely to restart, and am exploring a different srategy.
As you know, my main outreach to the world s by blogging, so I went and looked at my recent blogging history. It seems that I almost completely stopped blogging during the Revlimid time. It seems that this is a longer gap than any before (it was over the holidays.) This metric confirms what I felt. (Special thanks to the nurse, who when I reported what I was feeling, said something like: “I hear that a lot about Revlimid.”)
Now for many, the key indicator may be number of emails sent, number of Facebook postings, or of twitter messages, or of indeed any social media platform. It is easy to imagine tools to collect and transmit that data. Indeed, that data might inform conversations between care team and patient about impacts. (I know that once patients start to think about this data, it might impact our productivity, but it is still better data than nothing.)