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…

Dealing with constant tests and procedures

Some days I feel like a pincushion.

One aspect of having cancer is dealing with constant tests and procedures. Even being in remission does not seem to slow down the constant scans, blood draws, and incisions. Actually if anything it appears to be worse after chemo has stopped. In this post I will briefly share my experience dealing with the constant tests and procedures.

It seems the doctors constant want to scan or poke me

Prior to getting cancer I would rarely go to the doctor. Like many people I really don’t like going to the doctor unless I really need to. People like me tend to get somewhat overwhelmed once we have cancer and have to make constant trips to the hospital and clinic.

During chemo I was obviously at the hospital a lot. But even after chemo was completed I have had a lot of visits to the clinic to have scans or be poked. Below is a list of visits to the hospital and clinics I’ve had over the last six months since completing my chemo. Each of these visits was for a scan or to be poked.

  • PET scan to ensure I was in remission
  • Bone marrow biopsy
  • Second bone marrow biopsy due to the first one not working
  • X-Ray of chest due to breathing issues
  • X-Ray of neck/chest to see why port was not working
  • Ultrasound of neck to check on growth on neck
  • Biopsy of neck to check growth on neck
  • X-Ray of teeth due to abscessed tooth
  • Extraction of two teeth
  • Overnight sleep study at hospital
  • Second overnight sleep study at hospital
  • X-Ray of chest again for breathing problems
  • Ultrasound of lump on shoulder
  • Removal of large lump on shoulder
  • Removal of stitches from shoulder surgery
  • CT scan of chest and CT scan of abdomen to ensure I’m still in remission

The above list is the test and procedures I can remember off the top of my head (my hospital chart app won’t let me log in right now to see what ones I’m forgetting). It does not include the many doctor visits dealing with those tests and procedures. The list is also missing the maintenance infusions I receive every eight weeks (today happens to be another maintenance infusion day).

Not wanting to tell the doctor when something new comes up

All of these scans, tests, and procedures tend to get overwhelming. It has gotten to the point where I become very apprehensive about mentioning any new symptoms or issues I am having. I’ve spoken to many cancer patients who feel the same way. Just one little comment or question seems to lead to a new scan or procedure.

It’s not that I don’t understand that these scans and procedures are important. I really do. But nonetheless they do become overwhelming. It feels as if I spend more time at the clinic and hospital than I do spending time with my kids.

Stress added to family

It is not only me who feels additional stress from these constant tests and procedures. This spring my wife had a heart attack for the second year in a row. There are many factors in her hear condition, and stress is obviously one of those factors. Having to bring her husband to constant tests and procedures increases the stress upon her. Then of course there is the stress she feels waiting for the results of each test. I would say it is probably even more stressful for her than it is for myself.

My kids also have additional stress added to their lives with these constant tests. The boys try to hide any worry they have. Yet I have noticed they get more clingy and attentive after I’ve had procedures done. As a parent I can tell they are worried and trying their best to help me. I truly feel bad about putting so much stress on my boys, especially the younger ones.

Things likely won’t change

As I conclude this short post, I can’t help but feel things will not change going forward. I’ve spoken to many patients who have lymphoma spread throughout their body and bones like I have. For many of them the constant tests and procedures never slow down once remission has been reached. A large part of me feels I will be one of those patients that will constantly be visiting doctors until the day I die.

Don’t get me wrong though! I am very happy to be alive and will do what I need in order to remain alive. But that doesn’t change the fact that the constant scans and procedures are wearing me down.

Today’s Song: I don’t need no doctor!

For today’s song I go back to a classic track from Humble Pie. This song often goes through my head when I get tired of the constant scans and procedures. The song also reminds me of how much I really just want to be with my wife.

Bonus Track: Under the Blade

Today’s bonus track goes back to the 80’s with a song from the hair metal band Twisted Sister. This song is a bit heavier in style than what I normally share on this site. But the song has to do with dealing the anxiety of going into surgery (and not about suicide as it had been wrongly accused of back in the day).