Working and writing while on chemo and maintenance

I almost wished I used a typewriter. Crumpling up paper seems to be almost therapeutic.

One question that seems to come up for a lot of chemo and maintenance patients is whether they will be able to work while getting treatment. The answer seems to vary widely depending upon how each person reacts to treatment. In this post, I will share my experience of working while on chemo and maintenance therapy.

I should establish what I do for work

Before actually discussing my ability to work while on chemo and maintenance I suppose I should establish what I do for a living. The main this I do is write. I used to write a blog about South Dakota Politics called SoDakLiberty. When I became sick last year it just honestly became too much to keep up with that blog, and I stopped. Plus the amount of time I put into the blog really didn’t align well with what little revenue I got. To replace that I now do research and ghostwriting for others about politics. Ghostwriting isn’t a bad gig, but it does keep my name from being connected to stories I am quite proud of writing.

Additionally I am working on two different books. One is almost completed and I hope to publish it at the end of this year. The other is in need of major rewrites; more on that later in this post.

Finally, my wife and I own a tax and business services office. For the office I act as the IT guy and quality control. This time of year I am absolutely swamped. I have been spending about fourteen to sixteen hours a day for the last few weeks reviewing returns. Luckily I can do this from home by remotely connecting into my computer at the office. With corporate deadline being this Friday I should soon be able to slow down a little bit.

Working while on chemo was tough for me

From September through December of last year I was on chemo. During the first few rounds of chemo my side effects seemed pretty mild. The main two side effects that would impact my work was fatigue and brain fog. Fatigue is an obvious one that would affect someone who is trying to write. It is challenging to put words together when all you can think about is sleeping.

The brain fog, or chemo brain as it is often called, was by far a worse side effect impacting my ability to work. It was dreadfully difficult to write while my brain fog was at its worse. I found it difficult to put words in the correct order. Actually much of what I wrote at that time came out almost like dialogue from a Tarzan cartoon. I would then go back and rewrite those sentences many times. Doing a five hundred word post would take me a few hours at that rate. As a comparison, I am almost up to five hundred words in this post and have been writing for about fifteen minutes.

As chemo went on I found a way to combat the brain fog. Each morning I would play word and logic games for anywhere from one to three hours. This worked great. After playing these games, my ability to put words together seemed to be back to almost full capacity. As time went on I didn’t have to spend as much time playing these games. By the end of chemo I would only have to play these game about fifteen to thirty minutes a day to clear the fog.

During this time I did very little work for the office. The girls seemed to be afraid they would be an imposition on my recovery. At the time though I wish they had sent me more work as I was going stir crazy!

The fog wasn’t lifted as much as I thought during chemo

As I said, during chemo I was using word and logic games to clear the brain fog. This seemed to work well enough. Looking back at the posts I wrote I am mostly happy with what was published (I’m never 100% satisfied with my work). But then I recently looked at four chapters of a book I wrote at that time. To put it mildly, those four chapters are a disaster. None of the paragraphs seem to tie into each other, and I am continually switching directions in each section. It is as if I wrote each section in those chapters without actually knowing what was written previously. It is so bad that I have decided editing isn’t going to work. I have now deleted all four chapters and will have to start over. It was earlier this month I deleted those chapters, and I must admit a certain amount of depression occurred for a couple of days afterward.

Working while on maintenance

Maintenance has been a different matter. The work I have done on my book since being on maintenance has been normal. The cutoff point between a disorganized mess and actual writing appears to be about one month after finishing my final round of chemo. From that time on I only see the usual grammatical issues I suffer from (such as ending a sentence with a preposition).

It was also around that time I really had to step up and start working for the office more. Tax season hits hard at the end of January and continues hard until mid-March. This is because March 1 is the deadline for farm returns; which our office has a lot of farmer clients. And March 15 is called corporate deadline; which is when partnerships and S-Corps are due. Earlier I noted that I have been putting in long hours. For the last few weeks on a typical day I am working at least fourteen hours a day, shuffling kids between school and activities, and trying to write at least a thousand words either on a book or blog post. Part of this is possible due to my inability to sleep.

Insomnia has not relented now that I am on maintenance. Just prior to maintenance it appeared I was starting to sleep a little bit longer each night. After maintenance I am now back to only a few hours of sleep per night. Today as an example I went to bed about two AM and was up at about five AM. My work doesn’t seem impacted at all. Actually, I am able to write better than I have for ages. Perhaps sleep is overrated after all.

Time to get back to work

Now that I am over a thousand words in this post I probably should get back to reviewing tax returns; corporate deadline is this Friday after all! In this post all I really wanted to do was share my experience trying to work and write while on chemo and maintenance. When tax season ends, I can get back to writing and find out for sure whether the brain fog no longer impacts my ability to write books.

Song of the day: Working in a coal mine

No, I don’t work in a coal mine. But writing a post about working just made this song pop into my head. This version of the song became a massive hit for Lee Dorsey back in the 60’s.

Bonus song: Play Something Sweet

The above song was written by Allen Toussaint. He wrote and produced a large number of hits back in the day. This track from Three Dog Night is also a Toussaint song. It wasn’t one of Three Dog’s biggest hits, but I’ve always liked the song. Plus it happens to be about a person trying to perform their job, being a musician in this case.

Bonus Bonus Song: I never been to Spain

This song is not written by Toussaint. Hoyt Axton wrote this hit and it is one of my favorite Three Dog Night songs. Music has helped me get through many tough times in my life, including fighting cancer. Songs like this remind me that in this huge world I am very happy to be here with my family.

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.

Working while on chemo

Desktop of the businessman.One of the most common questions I get from people is whether I am able to work while going through chemo. I do work, but it is greatly diminished from what I was once capable of. In this post I will briefly blog about my current work experience while going through chemo.

The type of chemo I am going through is called R CHOP. It is a very aggressive type of chemo and is very hard on the body (but then I have yet to hear of a non-aggressive type of chemo). I have chemo once every three weeks. On the day of chemo and the two days following I am basically unable to work at all. Fatigue hits heavy on these days and I sleep most of my day away. Actually I look forward to these days now, because I know for at least a few days I won’t suffer from insomnia. At the same time though it means on these days I cannot work.

Earlier this year I had already started to work from home most days. This was not done because of my cancer. Instead I started to work from home three to four days a week in order to take care of my youngest son. By summer I was rarely able to make it to the office even once a week due to breathing problems. When I started chemo it was time to face the fact I should not be in the office at all. There are too many customers who come into the office sick. With my weakened immune system it just doesn’t seem worth the risk to come into the office when I have the option to work from home. The biggest downside to working completely from home is that it feels like I’ve abandoned my wife to run the office by herself. Actually, cleaning out my office was one of the hardest things I’ve done since being diagnosed with cancer.

Working from home may allow me to keep away from germs. But it doesn’t mean I get a lot done on the typical day. The brain fog I suffer from seems to get worse every day. On some days I can only work a few hours before the brain fog gets so bad that I can’t even put two thoughts together, much less work. On other days I can put in a good six or even eight hours of work. There is no consistency about how much time I am able to work. I have found that if I spend an hour playing word or logic games before I work, that I am able to use my mind for work longer. Also the days I am able to work longer I am doing tasks such as archiving old files in our database. This is a long monotonous process which requires very little brain power. Even if it is monotonous it does at least give me something I can do when the brain fog sets in.

I am somewhat lucky that I am able to work from home. Many cancer patients don’t have this option. Hopefully by the time busy season begins for the office I will be done with chemo and my brain fog will lift a bit. No matter what though I am more than happy to do whatever work I can from home. It is much better than just sitting around thinking about cancer.

Brain Fog

110311681Today I want to briefly blog about the worse side-effect of having cancer. It isn’t the fear of dying, nausea, or any of the multitude of side-effects that come from chemotherapy. No my biggest fear has become losing the ability to use my mind properly. Many people with cancer will experience something referred to as “brain fog” or “chemo brain” (or many other names). For the purpose of this blog I will stick to the term “brain fog” because it describes what I feel the best. It is my fear that any brain fog I experience will continue beyond chemo. In this post I will touch briefly on the subject; but this will likely be the topic of many future posts.

I’ve made a living using my mind. In the Army I was a communications technician. I went on the IT field where I eventually became a Network Engineer and Project Manager. Over the last few years I have been a writer and tax preparer. Basically I have spent most of my adult life relying upon my mind to make a living. I hope to continue making a living utilizing my mind. I fear however that may not be as possible as it was once.

Recently I’ve begun to understand that I suffer from brain fog. Here is part of what Mayo has to say about Chemo Brain:

Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

Though chemo brain is a widely used term, it’s misleading. It’s unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience.

Despite the many questions, it’s clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.

Over the last couple of months it has become very hard for me to organize my thoughts, especially in activities which require multiple steps. I can still do so, but I have to take more time and document things more than I used to. In the past I would create a mental flow chart of tasks to be performed. Now I find myself having to actually physically write things down to be able to see how a process should flow. This change started during my first cycle of chemo, so I am hoping it will go away after chemo has completed.

Another big change I’ve noticed is short-term memory problems. We all have moments where we walk into a room and forget why we went in there. That is happening to me all the time now. I have to document my tasks throughout the day so I don’t accidentally do something twice that I shouldn’t. On one particular day I almost took my morning medications twice. Luckily my wife was around to set me straight. Since that time I made sure all important things such as medications and meals are documented.

I call my condition brain fog for a reason. There will be times I just can’t seem to put thoughts together, as if the words I need are just out of reach in the fog. It is difficult to describe, but it really does seem that a fog has set inside my head. Today is a good example of that happening. Off and on and throughout the morning I tried to write a blog post, but couldn’t. The fog was too thick.

Going forward I hope the brain fog will go away when I am done with chemo. I have four to six more chemo cycles remaining. The problem is I know at least the memory problems have been happening since way before I started chemo. I believe I’ve had memory problems for months actually. It does however seem that the brain fog became much thicker after chemo. That would lead me to believe that chemo is in some way making my brain fog worse (unless the brain fog is making me think that).

I have been trying various things to battle against the brain fog. The main thing that seems to help is playing word and logic games. Hopefully when chemo is done the fog will lift some and I can feel I have my mind back. Actually, writing posts on this blog seems to help as well. At least it helps when the fog will let me write a post…