Thursday, December 19, 2013

Running an experiment

Yesterday, we went to DFCI to start "Round 3" of my chemo. This includes lots of blood tests where they make sure that my body can handle the next round and also assess the progress due to the previous round. Fortunately, the results of all the tests so far have been very good and they decided to let me start the next round.

You may recall that one "round" of RVD (ako chemo) is three weeks long. There are two weeks during which I get lots of pills every day plus four infusions on Wednesdays and Saturdays. These are followed by a week of "rest" during which time I take fewer pills - none of them being Chemo drugs.

So, with that out of the way, I would like to talk about a part of this that I find very interesting.

You know that I am a very curious person with particular interest in anything scientific. I love to run experiments. You would think that the doctors would be very specific as to what drugs I take when - and they are for most drugs - especially the chemo drugs. But for some of the others, they are less specific and this is the case with the anti-pain medications.

To be clear, my back has been sore for in several areas since I seemed to strain it back in September. Since then, I have not been able to lift things and even standing and walking around for longish periods can be uncomfortable. Fortunately, I am mostly pain free when sitting and lying down, though the transition from one position can be a problem. Still, I count myself very fortunate because I am really not that uncomfortable. I can't do everything I would like to be able to do, but I can sit in front of the computer in complete comfort. What more could anyone want.

But I am allowed to experiment as much as I want with pain relief. These experiments are made more interesting because I have a vested interest in the results. You would think this would be pretty simple. Change a dosage and see what happens, right? Except that I have 20 different pills sitting around - and a schedule for each day for when I take what. And this schedule changes every day. I keep a 21 column spread sheet to manage all this. Let me give you an example. Here is a photo of the pills for this morning. (I take fewer at lunch and dinner):

About a week ago, I decide that the narcotics were causing more problems than they were worth. (Ok - so  if you must know, we are talking about constipation here). Anyway, I stopped taking them. At first, I noticed no difference (which was what I had expected), but as the days wore on, I felt less and less comfortable every day. Simple, right - except that this was also about the same time the chemo stopped for my "rest". As you can imagine, this was a bit discouraging - like I am supposed to be getting better with all these drugs - not worse.

So, the question is "Why?" Is it because I stopped taking the Narcotics? It is because the disease is still screwing my body up? Is it because I am moving too much and straining myself. It is questions like this that make these "experiments" so interesting.

This decreasing comfort continued until yesterday with one exception. On Monday, I got an infusion of Zometa and I was supposed to take Tylenol to fight fever - except that I accidentally took an Advil or Aleve (I forget which) which is an anti-inflammatory. I felt pretty good that evening, then went back to feeling worse the next day.

Yesterday, when we discussed this with the doctors, they told me that Dexamethazone (one of the chemo drugs) is also an anti-inflammatory drug and maybe the problem was caused by "rest" from chemo. Anyway, today I am back on "dex" and I feel great. I was up walking around most of the day with little difficulty. In fact, I might even be close to my goal of being able to work in the shop (as long as I don't lift more than 5 pounds). So maybe my discomfort has to do with inflammation. We'll see how the next few days go. And maybe I will get my doctors to prescribe a replacement anti-inflammatory drug for the breaks I have coming up from chemo.

Anyway, I think this experimenting stuff is really interesting. I hope that at least you find it "not too boring."

But I wanted to post this while I am still feeling great. Who knows what tomorrow will bring.

By the way, the chemo also causes motor-mouth disease. And since I am sort of a motor mouth even without the chemo, I am sort of running at motor-mouth squared. You can only imagine what poor Barbara is going through. This is a pretty long posting. Maybe my motor-mouth disease extends to blog writing. 

1 comment:

  1. I like your motor mouth!!!! I find it very interesting to read this info and hope you can soon lift 10 lbs and get back on your horse!!! Here's some of my energy. I want to share it with you.

    Love you, Joan