One quarter of the way through maintenance treatments

Last week I was in the cancer center for my fourth infusion of Rituximab. This brings me up to half a year of being in remission. Since I did a post after my first round of maintenance infusions, I thought it would be appropriate to blog about the side-effects from this latest round.

Lack of sleep is still the main side-effect

My whole cancer experience has been an ongoing tale of sleeplessness. About a month ago I wrote about my sleep issues and included this chart showing how much sleep I get (or don’t get).

The above chart shows I really don’t get enough sleep. Now compare that to the chart below. This new chart shows all of last week and this week up until today (Friday):

It would appear I am getting more sleep by the pure numbers. My average seems to have increased to almost five hours per night. However that isn’t really true. My maintenance treatment was on the 7th of August. Notice how the 7th through the 10th (Saturday) have no sleep recorded. This was not a glitch of my fitbit. I really didn’t get any sleep those nights. Then for a few days I got very little sleep. Finally for the last two nights I got a good six hours. This has been great getting that much sleep, but I know it is probably unlikely to happen a third night in a row. Plus I didn’t have any sleep at all on Wednesday, which was prior to my two good nights of sleep.

My wife will probably read this and think “but I remember him sleeping those nights”. Well, no, I wasn’t. I tried to sleep and acted like I was sleeping. Mostly it was in the hope that pretending to sleep would make actually fall asleep. It didn’t work. One morning when she was sneaking around hoping not to wake me I actually had some headphones on listening to a audio book. I was desperate and trying anything to get sleep.

I’ve tried many things to try getting sleep. But it seems that for about a week following maintenance treatment that my already poor sleep schedule will become even worse. To keep my spirits up I just keep in mind that maintenance treatments should keep me in remission longer. A little lack of sleep due to maintenance treatments is a small price to pay for keeping cancer at bay.

Getting irritated about my irritability

Just as with the first round of maintenance, during this round I experienced some definite irritability. I don’t know if it is due to the steroids I’m given, or the fact my body just doesn’t feel right. No matter what the cause it seems to get worse each round. I find myself spending the week after maintenance trying to avoid people so I don’t fly off the handle at anyone.

There have been a few times in the last week I wasn’t able to refrain from snapping at people. Unfortunately it is usually my wife or my boys that are the receiving end of my irritability. They will feel hurt afterwards and left wondering what they did wrong. In all reality they probably did nothing wrong. It was just me being irritable for no reason at all. Luckily I have a great family and they seem to forgive my sudden irritable outbursts.

Just not feeling right

I mentioned above that I just don’t feel right after maintenance. This is a hard one to explain. Part me feels like I have light, almost flu-like, symptoms going throughout my whole body. But even that isn’t the right description of how I feel. All I can say is that the week following maintenance I feel “wrong”. Somehow every part of my body feels like something is physically wrong. But there isn’t any pain or anything like that. Perhaps it is all in my mind. Luckily that side-effect seems to last just under a week.

A year and a half of maintenance infusions left.

Lack of sleep, irritability, and feeling “wrong” are the main side-effects of maintenance I seem to experience. Technically I am a quarter of the way through my maintenance infusions. That leaves me with a year and a half of infusions left to go. Yes, even with these side-effects I plan to continue maintenance therapy. I’ve blogged previously about why I decided to go ahead with maintenance therapy, and still believe it is the right thing to do. I’ll just continue to put up with any side-effects in the hope I can gain more quality time with my family.

Today’s song: Behind Blue Eyes

I’m a big fan of The Who. Quite often during the past week I’ve had these lyrics stuck in my head:

No one bites back as hard
On their anger
None of my pain and woe
Can show through

Those lyrics seem to have taken on an extreme meaning for me the week following maintenance. My family and neighbors may think I snap a lot during this time, but they have no idea just how often I am biting my tongue to keep the anger from showing.

Bonus song: Who Are You

I thought sticking with The Who would be appropriate for this post. Actually I often ask myself this question after going into a fit of maintenance rage.

Bonus Bonus Song: Basket Case

This song keeps coming in my mind during maintenance week as well. Maybe I should talk my kids rock band into learning it. Its a great song, even if I’m not keeping it my head for the right reasons…

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