Extra Spoons: A Ritalin Experiment

One of the most devastating side effects of my new line of treatment (Enhertu) is the crushing fatigue. This is a type of fatigue that is difficult to describe. It’s like every cell has an anchor to it, like each body part is tied to the bed, even my eyelids feel heavy, and taking a nap or sleeping doesn’t help, you wake up just as a tired. Thankfully this side effect is limited to several specific days after the infusion and doesn’t linger.

But to be entirely not functional for days is not a situation that I’m ok with and I shared this with my palliative doctor.

Her suggestion was a trial prescription of Ritalin, commonly used to treat ADHD. My initial reaction was not 100% positive. I take so many medications already that to add on more seemed wrong to me, plus the added potential of dealing with more side effects and then another medication and on and on. But knowing how much the lack of functioning in the week after infusion wasn’t going to work for me, I agreed to try as a precursor to discussing a dose reduction (also not my preference).

Let me take a side bar here to highlight the spoon theory, which is a handy way to describe the fatigue caused by a terminal diagnosis and all the medication we must take to stay alive, year after year. I’ve found this meme and the link below to be very helpful — basically, we wake up with a finite amount of spoons (energy) and when they are spent, there no way to get more.

And so, in the week after my second infusion of Enhertu, I tried taking a low dose of Ritalin each day and it made just sufficient of a difference to make me a believer. The brain fog is there, but just enough less to allow me to think more clearly. The fatigue is absolutely still there, but just enough less to allow me to feel safe transporting my children to and from school. The struggle to maintain some level of “normal” is there, but the Ritalin helps me to navigate my days a little easier.

And anything that makes our lives easier is a good thing! Now to just get those pesky tumor markers under control …