Each round of chemo gets harder on the body

Last week I had round five of chemo. My blogging has been somewhat lacking since receiving my latest round of infusion drugs. Partly this has been due to my being busy with other projects. But honestly a bigger reason is because I feel just plain beat down. Each round of chemo seems to get harder on the body.

Overall I really can’t complain about the side-effects I’ve had while on chemo. The main side-effects I experience are brain fog, insomnia, and bone pain. I don’t experience debilitating nausea like some on chemo experience. But I have noticed over the last few rounds of chemo that each time I just feel more run down. Of course the lack of sleep may have a lot to do with this run-down feeling.

Over the last few days I’ve been reading the experiences of a lot of cancer patients, especially for those on the chemo regiment I am taking (R-CHOP). I can’t help but think of Forrest Gump when reading through these stories. I can hear him saying something like “Chemo is like a box of chocolates, you never know what you’ll get.” With so many possible side-effects it almost seems that each persons experience with chemo is truly unique. Plus many people on chemo, including myself, appear to have their chemo experience change each round. In my case it appears to get worse each time. But other chemo patients appear to have fewer side-effects with each round.

Today, a week after my latest round of chemo, I actually feel pretty good. It does make me wonder what round six of chemo will be like for me in two weeks. Theoretically that could be my last round of chemo, which at this point I wonder how worn down I will feel after that round. I guess I’ll find out in two weeks.

My port mostly worked for round 5 of chemo

Last week I blogged about the catheter connected to my port being retracted. The surgeon didn’t think this would be an issue for receiving my chemo infusion. Yesterday had I round 5 of my chemo infusion and the port worked fine for receiving drugs from the IV, but not for taking blood draws. In this post I will share that story.

The chemo appointment started as it normally does. One of the nurses accessed my port by connecting a needle contraption through my skin into the port. She then proceeded to flush the port, which the surgeon said might actually undo the retraction. The port flushed fine and there didn’t seem to be any resistance. That was good. But then the nurse went to take a blood draw from the port and she was unable to get anything to return. Her and another nurse tried multiple flushes, I think around eight or so. For some of those tries they had me move my neck into different positions to see if that would help. Nothing made a difference. The flush would go through the catheter fine, but no blood would come back when trying to get a blood sample. After speaking to the surgeon over the phone, the nurse said we would get an x-ray to see what was going on with the catheter now.

As a recap this is the picture previously posted to recreate what my x-ray looked about a month and a half ago. In this picture the catheter is correctly going from the port, up to the neck and down through my jugular, and stopping just outside of the heart.

port

This next picture is how the port looked about a week and a half ago. Looking at this picture is shows the catheter being retracted into a loop. The end of the catheter is also further away from the heart due to the loop.

portretracted

Finally, here is a recreation of the x-ray from yesterday. The loop is gone, but now the catheter is in a J shape in the jugular.

portretractedj

After viewing the x-ray I received a visit from the surgeon. He believed flushing the port must have caused the end of the catheter to straighten out. But it was not strong enough to completely extend the catheter. Since the catheter is still in the jugular and not in a smaller vein, the surgeon decided it was OK to proceed on to chemo with the catheter as it is. He noted the blood draw would have to be done on my arm. He also did a couple of flushes to ensure there was no resistance. He also verified blood draws were not possible. At the end of his visit he said we would look at this again in a few weeks after round 6 of chemo is done. After that he would be comfortable fixing the catheter, since I will hopefully be done with chemo treatments. My PET scan after the sixth round will decide if I have to go a full eight treatments. But my PET scan after round three looked good, so I hopeful the next PET scan will show no active cancer in my bones. If I have to go a full eight rounds I’ll speak with the surgeon to see what the plan will be then.

After the surgeon left, a tech from the lab came to take my blood. As usual my numbers were looking good. Each round of chemo my blood numbers have looked good and recovered well from the previous round of chemo.

Finally it was time to receive the drugs through my port. The saline bag flowed fine. Then the antibiotics were put through the IV and they ran fine. All of the drugs the nurse put in through the IV flowed fine.

Hopefully the catheter will be fine for round six of chemo, which happens to be scheduled for the day after Christmas. Fluids flowing from the port to the jugular are working good. The only problem right now is that the port cannot be used to do blood draws. Basically my ports catheter is acting as a check valve. Of all the problems one can have with a catheter or port this one isn’t so bad. But it is something that will eventually have to be dealt with. After I’m done with chemo I’ll have two years of rituximab maintenance infusions.

Fighting brain fog with games

linkapix
Link-A-Pix has become my favorite game to battle brain fog. 

Last month I did a post about brain fog. As I said at the time, this is probably the absolute worse side-effect of cancer for me. There are days, such as yesterday, the brain fog will leave me unable to write on my blog or on one of many books I am trying to finish. Even today the fog was a little bit thick. Luckily I have found a way to clear up the fog, at least on most days. Clearing the fog is usually just a matter of playing some word and logic games.

Today is a good example of how playing games has helped me. This morning I woke up at my new normal time of about four in the morning (sleeping issues are getting worse). In the past I would use these early mornings to write a post or do some research on a book I hope to finish. Over the last couple of months I have found it almost impossible to get words to form in a way that makes sense. Today is no exception. So what I had to do was spend about two hours playing word and logic games. I then brought my youngest son to physical therapy and came back to play another hour of games. Finally I was then able to sit down and write. I actually finished off a chapter in a book and now I am writing this blog post. Just a few hours ago this would not have been possible.

I have spoken with other writers who ask me if this isn’t simply writers block. No, in my experience this is nothing like writers block. It is much worse (although both are frustrating). My traditional method for fighting writers block is actually to stop using my mind, such as by watching a cheesy sci-fi movie. That method does not work against brain fog at all for me. It is my guess that whatever causes brain fog uses a different part of the brain from what causes writers block.

The games that work the best for me are those which require some concentration. On my PC I bought a game called Puzzler World through my steam account. This game has been great for battling brain fog. It includes traditional games such as word find, crossword, sudoko, fitword, and many others. Actually my favorite game in this collection is Link-A-Pix, a game I remember enjoying as a child. When I’m not around my computer I have a few physical books full of these same games.  My wife was wonderful enough to buy them for me. These types of games are widely available on the internet for free. I would recommend anyone suffering brain fog to give this approach a try.

Reading this you might have noticed I spent a couple of hours playing games this morning. Then I went and played for another hour later in the morning. It seems the fog won’t lift right way. Usually after an hour of game-play the fog lifts enough for me to regain my mind. But on some days, such as today, it can take two or three hours of games. I don’t know why it takes so long, but it is what it is. Of course on other days playing for a half an hour will lift the fog. I have yet to figure out any rhyme or reason to the brain fog; other than the fact that it never seems to go away on its own.

Hopefully this post will help other cancer patients find a way to possibly fight against brain fog. It might seem like a waste of time to sit around playing games for a couple of hours; but it is still more productive than being unable to do anything at all. Speaking of which, I think I’ll check out a Link-A-Pix game I found online.

 

Bonus Song

I couldn’t get this song out of my head while writing this post. I was more into hair metal back in the 80s, but despite that I’ve always like this song. I’ve somewhat changed the lyrics in my head to: One night of brain fog, and the tough guys crumble.