Why I stopped maintenance treatment early

My memory issues had me feeling like I was losing floppy disks.

In April, I had blogged about my regularly scheduled maintenance infusion being delayed a month. My next maintenance infusion never happened. Due to publishing issues, I have not blogged since then and decided now I would catch everyone up on why I stopped my Rituximab maintenance infusions. 

Ongoing memory issues

Through my blog over the last year, I have posted many times about memory issues. Actually, of all the side effects from lymphoma and chemotherapy, memory issues by far are the most problematic for me. Ever since going through chemo, I have had problems with short-term memory. And it isn’t just a thing where I’m not paying attention. It’s also not a situation where I will remember later on. A lot of conversations I have had with family and friends disappear after I have them. It is not every conversation, but enough to be quite concerning. 

A final visit with the neurologist

I’ve visited with a neurologist a couple of times over the last year. The last of these appointments occurred in April. Up until this time it was believed my memory issues were being caused by the maintenance drug I had been taking, Rituximab. He noted this is not a common, or even uncommon, side-effect of Rituximab. But he did say with drugs such as Rituximab, it is not unheard of for a patient to have very rare side-effects which are not generally seen in other patients. It is his belief that my short-term memory loss could in fact be a side-effect of Rituximab. His recommendation was to stop the use of Rituximab and look at alternatives.

Meeting with the oncologist

In May, I had the appointment scheduled for my maintenance infusion of Rituximab. Before the injection was expected to begin, I had a meeting with my oncologist. I spoke with her about my short-term memory loss. Also, the input from the neurologist was taken into consideration. It was my oncologist’s recommendation to stop maintenance to see if the memory loss would become better.

At that time, I had about a year and a quarter of maintenance infusions. The original plan was to have two years of maintenance. We hope the infusions I could receive are enough to keep the lymphoma at bay for a good number of years. Going into this, we knew maintenance wouldn’t get rid of lymphoma cancer altogether, but it has been shown to prolong remission for many people. Hopefully, I received enough dosages to be in remission for a good decade before needing more invasive treatment (such as chemo or CAR-T cell therapy).

Three-month follow-up with my oncologist

Last month I had my three-month follow-up with my oncologist. She, of course, asked if my memory issues had been getting better. I should have been prepared for the question. But honestly, I was caught a bit off guard. As I looked back at my summer, I realized there seemed to be very few memory issues. I can’t recall any embarrassing situations that came about because I forgot a whole conversation. And being off maintenance, I feel better than I have in ages.

My wife did mention she thinks I still have some memory issues. She might be right. But they don’t seem to be anywhere near what they used to be. In fact, my current memory issues are few and far between and seem to be more of a chemo-brain type thing than a full-blow side-effect of Rituximab. As time goes on, I’ll have to try to figure out a way of seeing whether my memory issues have gotten better.

Goodbye to maintenance

I must admit I’m not sad to be done with maintenance. Going into maintenance I was willing to put up with the side-effects and lowered immune system with the hope it would continue my remission. Had the side-effect kept to feeling weak and flu-like symptoms I would have continued on maintenance all the way until its two-year conclusion. But these memory issues really had me worried. A great fear of mine is that these memory issues would stay with me for life. There is a possibility that continuing on Rituximab would have done permanent damage to my memory. Permanent memory issues just to possibly extend my time in remission just didn’t seem worth it.

Song of the day: Say Goodbye

There are a lot of songs about leaving something behind and saying goodbye. The song I chose for saying goodbye to maintenance comes from Kid Rock. The following lines went into my head while thinking of saying goodbye to Rituximab:

comes a time we have to face it
maybe it’s just time to say goodbye

Say Goodbye, Kid Rock

Bonus Song: Fooling Yourself

This song from Styx often comes to mind when I plan significant changes in life. I particularly like this live version found on YouTube.

My visit with the neurologist for memory issues

A couple of weeks ago, I mentioned the doctor had halted my regularly scheduled maintenance infusion of Rituximab. This temporary halt was so my short-term memory issues could to further diagnosed. The oncology staff set me up with an MRI appointment followed by a visit with a neurologist. In this post, I will discuss how the meeting with the neurologist went. I will note this post is only going to focus on the brain part of my visit with the oncologist. In a future post, I will relay other conversations I had with the neurologist.  

Feeling this was a waste of time going in.

Going into this appointment, I had this feeling that I was wasting the time of the neurologist. I already had my MRI completed a week prior. The oncology nursing staff notified me that nothing worrisome was present in the scan. That was great news. There was no sign of cancer or other abnormalities which could be causing my memory loss. At this point, I figured my short term memory loss was a side effect of the Rituximab infusions I’ve been taking every eight weeks.

The appointment was worth it!

I was wrong about the appointment being a waste of the neurologist’s time. The neurologist seemed glad I came to see him. I found the meeting to be very valuable to me. I’ve got to remind myself that sometimes doctors refer me to specialists for a reason. In these situations, I tend to get stuck in the mind-frame that people more deserving of treatment need to see these specialty doctors before I do. But in reality, I have more than enough medical issues that I should be thankful to get such excellent medical service in all areas.

Results of my MRI.

First, the neurologist went over my MRI results. As noted earlier in this post, there was nothing worrisome in the scan that would explain my memory loss issues. But there was mention of a small bony area in my skull, which looked odd (my words). This bone variation had been noted on a prior CT scan and has not appeared to change since then. The neurologist stated this doesn’t seem to be anything worth worrying about at the moment. But long term, he wants to ensure this area does not grow.

Verifying my symptoms.

Before meeting with the neurologist, a couple of grad students asked me a lot of questions. The students also led me through a series of logic tests. The doctor let me know my analytical skills seems to be quite sharp. I related my experience with brain fog during chemo and how I fought the fog with logic games. Since being off chemo, the brain fog slowly lifted over time. That is except for short-term memory loss. 

He also noted that I seemed to be handling myself very well, both mentally and emotionally. I did relate the bit of depression I had earlier this year. But since then, I have been excellent and looking forward to each day. Since getting past that bit of depression, I don’t seem to have had many brain fog related symptoms other than short-term memory loss.

Finally, the neurologist had me walk through my short-term memory loss symptoms. I let him know it was other people that were informing me about the memory loss. I would have the same conversation just minutes apart and have no recollection of the earlier conversation. I also related how I used a webcam to verify my dog was taking advantage of my memory problems

So far, I haven’t had problems remembering what I’m doing while driving or have feelings of being completely lost. I forget conversations and such in the short-term. Being unable to know if I’ve had a conversation before, has also caused me to avoid public situations around other people. It doesn’t seem consistent and seems worse the few weeks following maintenance treatment. Well, at least family members tell me its worse at those times.

The neurologist thinks this is a side-effect of the infusions or chemo.

At the end of the appointment, the neurologist let me know he believes I am suffering a side-effect from the drugs taken. Likely it is a side-effect from the Rituximab, although it was possibly still a side-effect from chemo a year ago. The fact the memory issues seem to coincide with my maintenance treatments seem to back up that theory. But he also noted it is excellent the other brain fog related items I had during chemo are absent.

I will follow up with him in four months.

I went into this appointment, thinking I was going to waste the neurologist’s time. Not only did I appear not to waste his time, but he also wants to meet with me again in four months to see how I’ve progressed. He informed my oncologist of his findings and recommended I go back on maintenance right away. I agreed with him that this one possible side-effect is not reason enough to stop maintenance. I only have about a year left of maintenance anyhow, and I want to stay in remission as long as possible!

PS. I did start maintenance infusions the very next day after this appointment. My oncologist wasted no time.

PPS. In a future post, I will briefly discuss other things the neurologist was able to explain about me that had nothing to do with the MRI or memory loss.

Song of the day: Feeling Good Again

I’ve shared this classic Robert Earl Keen song a few times. Leaving the appointment with the neurologist I was feeling pretty good. I couldn’t help but think about this song!

Bonus Song: Brain Damage

Before getting the MRI results, I had this classic Pink Floyd song going through my head occasionally. I kept wondering if maybe there was something wrong with my brain.

Getting an MRI for memory loss

Yesterday I was supposed to have my latest maintenance infusion of Rituxan (Rituximab). That did not happen after consulting with the oncology CNP and oncologist. My memory issues have not improved, and they decided to schedule an MRI for me instead. In this post, I will briefly discuss my memory loss and upcoming MRI.

Memory loss is not improving.

I’ve noticed memory loss issues for quite a while now. Over a year ago, I mentioned it in my post about brain fog (chemo brain). Since that time, my short-term memory problems have not improved. I think they have become worse. It has gotten to the point where my kids don’t even like to tell me about anything coming up because they figure I will forget it anyhow. 

My memory loss has also become one of the reasons I try to avoid too many people. It gets frustrating trying to talk to people with the knowledge that I might be forgetting conversations from earlier. I’ve turned in to the person that repeats the same story over and over again. Even worse, I’ve become the person that can’t be trusted to remember anything. It gets quite frustrating.

Nothing seems to work for improving memory loss.

I’ve noted before that playing logic games helps out with the thinking portion of brain fog. Sometimes the fog is so thick I can’t write a single blog post. But after playing logic and brain games for a little while, the mist will open up enough for me to think straight. As far as I can tell, playing games does not help with my memory loss. I’ve also tried memory and other brain games. Nothing seems to work. 

Of course, part of the problem is I don’t know just how often I am suffering from memory loss. There are times where friends or family members will bring it to my attention. And of course, there are times I am sitting somewhere trying to remember what I was going to do. But I can’t help but wonder how often I am experiencing short-term memory loss and don’t realize. How am I supposed to know I forgot something if I don’t remember there was something to forget?

I am getting an MRI of the brain.

When I had my consult with the oncology CNP yesterday, I brought this up. My wife was there back up what I was telling the CNP. I think my wife is even more worried about my memory issues than I am. It can’t be easy for her to be married to someone going through memory issues.

The CNP and oncologist met about my memory loss and decided against having me take my Rituxan infusion. Instead, I would be scheduled for an MRI of the brain. They want to try to narrow down what is causing the memory loss. This short-term memory loss could still be part of my brain fog from going through chemo last year. It could also be a side-effect of the Rituximab.

There are other possibilities unrelated to chemo that could be causing my memory loss. It is possible cancer has spread into my brain and is causing issues. I doubt this is the issue, but it is a possibility. There are also possibilities I can’t think of, which an MRI may be able to spot. I believe the main reason I’m getting an MRI is to make sure these other possibilities are not causing my memory loss.

MRI on Monday

My MRI is scheduled for Monday morning. Some date after that I will have an appointment with a neurologist as well. I’m not nervous about either appointment. Personally, I think my short-term memory loss is still a side effect of the brain fog caused by chemo. But I have researched enough cancer stories now to know that there are other possibilities, and I suppose it isn’t a bad thing getting more information about my brain health.

PS. I also found out I will be taking my port out. But that is a post for another day.

Song of the Day – Let’s Make a Memory

Talking about memories brings this classic Roy Orbison song to mind.

Bonus Song: Check My Brain

The bonus song is a little harder rock than I usually post on this page. I can’t help but think of this Alice in Chains song when thinking about going through a brain scan.

Brain fog and being around too many people

To me one the worse side-effects from having cancer has been the brain fog. I have found playing games helps me fight the brain fog that prevents me from writing. However I have found nothing that helps with the memory issues associated with brain fog. In fact I feel because of this memory loss I feel that I am changing. In this post I will briefly share my memory loss issues related to brain fog.

I seem to lose all short-term memory at times

My family over the last couple of years has noticed my memory has gotten pretty bad. It’s not usual for people to forget some conversations, because they are thinking about something else while listening to the other person. But this goes way beyond that. It got to a point where my kids don’t like to tell me about anything they need to do, because they know later on I likely won’t remember it and get annoyed at them for not telling them. That is another major way my family has been impacted by cancer. My kids in particular never know what I will remember and assume I will never remember anything anymore.

Over the last year I have found it necessary to take notes in my phone about any conversation I believe is important (of course I often forget to do that…). Throughout the day I will look at my notes and will have forgotten a lot of what I have written down. Before I started taking these notes I started thinking the whole memory loss thing wasn’t real. There doesn’t seem to be any pattern as to what I forget or what I remember.

Avoiding talking with others

I’m not talking about situation where something seems forgotten and then someone says something that brings forth a memory and you say “oh yeah, I forgot that”. No, these memories seem completely gone. There are times I do say “oh yeah”, but I only do that to try covering up the fact I really had no clue what happened. It is getting quite frustrating and I sometimes find myself getting quite grumpy with people because of it.

Actually, lately I have tried avoiding any social situations where there are a lot of people around. The more people there are around me, the more likely it seems that I will forget important details that have happened in the recent past. About a week ago I found myself snapping at my oldest son because his puppy was being a puppy. I love my son and his dog. I love being around them. Yet I snapped at them for no real reason, other than I believe my memory issues were overwhelming me.

My dog has learned to take advantage of my memory problems

Lucy. It was actually while I was taking this picture and making a meme out of her that it occurred to me she might actually be taking advantage of my memory issues.

My memory problems isn’t all bad for everyone. Lucy, the Yorkie in our family, has learned to take advantage my memory issues in an attempt to get extra treats. Usually after getting a treat for peeing Lucy would go off and be pitiful somewhere. But now she just stays there acting as if she never got a treat. This sudden change in her behavior had me wondering about why she suddenly expects a second treat. Plus, she wasn’t always waiting for a second treat, only about half the time. This had me wondering if my short-term memory issues were causing issues with me remembering giving her a treat.

To test whether Lucy was abusing my memory issues I setup my webcam on the computer where I normally give her the treats. I recorded myself working at the computer for a whole day. At then end of the day I looked through the footage to see if there were times I would give her a second treat. Sure enough, almost half of the time I would give Lucy a second treat. When I gave her this second treat I would even say the things that I would normally say. I did not once recall giving her two treats for the same trip outside that day; yet the camera shows I did.

I now have a system in place to prevent myself from doing this. Getting that many treats would be bad for Lucy long-term. This whole situation does show how smart dogs can be though…

Hopefully my memory issues improve

As I close this post all I can do is hope that my memory problems improve. I’ve spoken with other cancer patients who had brain fog similar to what I experience; and their memories improved after a couple of years. Of course, I’ve also spoken with a couple of patients who feel their fog never got better and with yet other patients who never experienced brain fog. For the sanity of my family I hope to be one of those who is able to navigate out of the brain fog.

PS. Good news. I think we are closer to the launch of the podcast!!! Yeah!!!

Song of the day: Forgot to remember to forget

This classic song actually documents the opposite of the problem I have. But this song comes to mind when I think about forgetting. Elvis Presley originally recorded this song. There is also a Beatles version. But I happen to really like the Johnny Cash version:

Bonus Song: Going slightly mad

If I ever completely mentally lose it, I have a feeling it will be due to these memory issues. In this track Freddy Mercury and Queen explain how I feel at times. (and no, I’m not actually going mad yet).

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.

Fall allergies while on chemo

Cleaning up Yard during AutumnEarlier this week I noted there wouldn’t be any real post that day due to not feeling very well and my brain fog being too thick. For the last few days it has been hard to put thoughts together and breathing has been very hard. Luckily today I seem to be back to normal and believe it was in fact fall allergies which took me down for the last few days.

One thing I love about our home is that we have a lot of old trees surrounding the house. Of course that also means a lot of leaves. Sunday of this week was a very nice day. It was slightly cool, but there was no wind at all. This was perfect for one last time to clean the leaves in the yard. I spent a few hours in the afternoon with my leaf-blower and hauled a full pickup load of leaves to the dump site. Not only did I feel that something was accomplished by removing all the leaves, I also got some good exercise in.

It didn’t occur to me at the time to worry about my fall allergies. I am already taking Claritin every day. I partially take Claritin to combat fall allergies; and partially to combat the side-effects of certain drugs I am taking; more specifically Claritin helps battle the side-effects of Neulasta and Xgeva. Even though Claritin does a fine job of keeping fall allergies at bay, it does have its limits. I apparently found those limits by using a leaf blower to shoot a lot of allergens into the air.

I didn’t exactly have my normal fall allergy symptoms. Typically during fall I get a runny nose, my sinuses feel plugged, and my head feels like it is going to explode. This time I had a little bit of a runny nose, but I don’t believe my sinuses were clogged at all. My head didn’t feel like it was going to explode either. Instead I had a harder time breathing and I just felt “off”. Additionally my brain fog seemed to really get thick. I just couldn’t put any thoughts together at all. Finally today, four days later, I feel almost back to normal (well the new normal for me being on chemo).

This morning I was in contact with another cancer patient going through chemo. She has a similar experience when doing yard work. To combat this she has to take a shower immediately after doing any yard work and ensure she doesn’t come in contact with the clothes she was wearing again until after they have been washed. Additionally if she has done something like raking she will put the blue mask on. That day I did not take a shower until the evening. Now I know to do that right away.

Now that there is a light layer of snow on the ground hopefully fall allergies won’t be an issue. Furthermore, if my treatments go right I hopefully won’t be on chemo come spring when I have to worry about allergies again. Either way I now know my body definitely reacts differently to fall allergies than it used to. I guess it’s just one more thing to watch out for while on chemo.

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…