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.

The week and a half following the maintenance infusion

It has been just a little over a week and a half since I had my maintenance infusion of Rituximab. Overall I would say maintenance has gone well for me. But I have experienced some side-effects. In this post, I will share how the last week and a half has gone for me.

Lack of sleep is back in full force!

In the post about my maintenance treatment, I mentioned taking a four-hour nap afterward. Unfortunately, that seems to be about the longest I’ve slept over the last couple of weeks. That night I slept for only a couple of hours. At the time I hoped my lack of sleep was due to having taken such a long nap. I also believed the steroids given to me during the maintenance infusion might have caused the sleeplessness. Both of those reasons could have been true for that night, but wouldn’t explain my sleeplessness since.

Since maintenance I seem to get about three to four hours of sleep a night. Every four or five days I seem to sleep about six or seven hours, most likely my body trying to catch up on sleep. I did have sleep issues prior to maintenance, but at that time I was back up to five or six hours of sleep every night. It is possible my sleep apnea is getting worse. This week I actually go back for a second sleep study to get a CPAP machine set up in order to help me sleep. I’m not really looking forward to sleeping with a CPAP machine. But then if it actually helps me sleep better at night I’m all for it.

Irritability came back!

As part of maintenance therapy I was given a steroid. According to my chart, the steroid given to me via IV was dexamethasone sodium phosphate, also known as Hexadrol Phosphate. This was also the steroid used during my chemo infusions. The only difference between maintenance and chemo is that I no longer have to take the prednisone steroid. But just like during chemo I experience some extreme irritability for a couple of days.

Previously I blogged about the rage experienced while on prednisone. I was much less full of rage this time, but there was still a definite irritability. For a couple of days I seemed to get annoyed and almost angry every time the boys fought. As a parent I know the boys will fight for no reason at all. Yet on one of those days I had a large confrontation with my youngest son that left me apologizing to him for a couple of days. Hopefully the kids understand I was not quite myself on those days.

The chills!

The chills can get quite annoying!

Since my last round of chemo, I have experienced the chills occasionally when going to bed. I hadn’t really thought too much of this due to the fact it is very cold outside and it didn’t last very long. On a typical night prior to maintenance I would experience the chills for about five to ten minutes. After maintenance therapy, I now experience the chills for about forty-five to sixty minutes per evening. The chills always seem to come when I am going to bed. Nothing I do seem to get rid of them.

I’ve spoken with other lymphoma patients that have experienced the chills after chemo is completed. There doesn’t seem to be a unifying reason as to why some of us experience the chills. One common reason given is that chemo causes early menopause. Since I am not a woman I don’t really think that applies to me. Part of me wonders if it is not due to the rituximab. Rituximab is the common drug I used both during chemo and during maintenance therapy. And the chills is a common side-effect of the drug. I’m hoping as time goes on this particular side-effect will either go away or at least get reduced.

Not a lot of side-effects

I don’t seem to have a lot of side-effects from maintenance therapy. The main side-effects I have is lack of sleep, irritability, and the chills. Overall I can live with these side-effects if it means maintenance therapy can keep my lymphoma at bay longer. Plus I hope that as maintenance therapy goes on my body will just adjust better and the side-effects will reduce each time.

Today’s song: I’ll Sleep When I’m Dead

Today’s song comes from Warren Zevon. This track is called I’ll sleep when I’m dead. Since getting lymphoma my wife doesn’t like me to use the phrase I’ll sleep when I’m dead, but I actually have used it many times over the years. The song has some obvious references to living life to its fullest. But at the same time there are references to being stretched a little thin. So much to relate to in this song, especially when experiencing sleep issues!

Bonus song: Poor Poor Pitiful Me

Actually, this song isn’t about me at all. My constant companion throughout chemo and maintenance is Lucy. She is a nine-year-old Yorkie and is always at my side! Of course, just like any other dog she thinks her life is so rough, and I often sing this Warren Zevon song to her.

The first round of maintenance therapy is knocked out

Today I had my first round of maintenance therapy with Rituximab. This is the first of many infusions over the next two years; I will have these Rituxin infusions every eight weeks. Earlier this week I blogged about my reasoning for doing maintenance. For today’s post I thought I would share my maintenance day experience. Many of us going into maintenance for the first time wonder what it will be like and I hope sharing my experience will help others.

Pretreatment blood draw and vitals check

This visit began just the same as my chemo appointments. First I had to get a few vials of blood drawn. Actually the nurse assigned to me today is new to oncology floor, so she put in an order for the lab to come draw blood from my arm. I didn’t say anything. But as soon as the lab tech came into my room another nurse came in and said “Ken, you know better. We use your port.” So then the newer nurse got her first opportunity to insert the IV line into the port on my chest. She actually did really good. The port on my chest sticks way out, making it easy to see the three dots marking where the needle gets inserted. Most important, she stuck the needle in fast so it wouldn’t hurt, just a slight sting which I’ve gotten used to from doing chemo.

Once the port line was installed she couldn’t get a blood return right away. Oh no, I thought, my retracted port is back. My port seemed to work good for blood draws during my biopsy, so I thought any port issues were a thing of the past. Luckily after a couple of flushes the port was allowing blood to flow back into the syringe. The nurse was then able to fill all three blood vials with no problems.

Then, just as during chemo, my vitals were all checked. The only vital kinda off was my temperature. I was running a temp just over 99 degrees. I have a sick kid at home right now and it makes me wonder if I might get what he has; oh goody! My blood pressure was a little bit high for me at 122/80. I guess I was nervous about maintenance therapy.

Nurse visit

After the blood tests were complete the CNP came in for a short visit. She let me know all my blood counts looked good. The only number that was very high was my glucose. I’ve been trying very hard to cut down on sugar. But it is hard! I’ll just have to try harder! It is especially true I need to cut out the sugars because I need to lose the weight I gained while on chemo. Steroids and I don’t mix well!

The CNP also passed on some good news from my oncologist. After looking at the bone marrow biopsy results she determined I wouldn’t need to do the bone marrow rebuilding medicine called Xgeva anymore. I am really glad to be done with that shot. I one time forgot to take Claritin when getting an Xgeva injection and it hurt so bad I thought I would need an ER visit. That is a good tip for anyone taking Xgeva or Neulasta shots: Claritin works!

The pretreatment drugs

Just as when I had chemo, I had to take certain drugs before I could actually get my Rituxmab infusion. First I had to take two Tylenol caplets. As I was taking my Tylenol something occurred to me: I hadn’t taken more than a few Tylenol or Ibuprofen for over a month! The pain I would experience over the last year seemed to have subsided down to almost nothing! I had gotten very used to pain over the last year, but somehow I missed out on the fact it was nearly gone.

Then I had the saline IV bag hooked up. That stays hooked up the whole time when receiving IV drugs. After the saline drip was started I was given a small bag of steroids. It took about twenty minutes for the steroid bag I believe. Part of me hoped I wouldn’t have to need steroids anymore. I know from past experience that steroids make me very hungry and moody.

Finally I had a shot of Benadryl injected into my IV line. During one of my chemo visits a nurse told me I only have a half does of Benadryl. I can’t imagine having a full dose. That half dose almost knocks me out instantly and I’m in a blur for the rest of the visit.

From the research I’ve done on chemo and maintenance treatment the trifecta use of Tylenol, steroids, and Benadryl will prevent most of the side-effects of Rituximab for most patients. Luckily that seems to be the case for me. If I would have started to show side effects the nurse let me know they would likely have increased the Benadryl dosage.

The actual Rituximab infusion

Honestly I don’t remember much of the infusion experience. Like I said above the Benadryl seems to put me in a daze. The actual infusion took 90 minutes. The nurses did a slower drip for the first half an hour to ensure I wouldn’t experience any nasty side-effects. Then it was put out much quicker for the last hour. One of the nurses confirmed I was getting the 1,000 mg bag of Rituxin; which is the same as I had during chemo.

The only real side-effect I experienced was a drop in blood pressure. This was the same thing that happened to me during chemo. I can’t remember what my last reading was, but I know my bottom number was 50. If that is the worse side-effect I’ll have from Rituximab I can live with that.

After maintenance I took a nap

Today my brother-in-law was gracious enough to be my driver (the wife and I work in a tax office, bad time of year for things like this). On the way home I was still in a Benadryl daze. I ate my lunch and planned to take a short nap. Four hours later I woke up and barely had time to get my middle child picked up from basketball practice. Luckily that nap had completely gotten rid of the daze. It just happened to be a bigger nap than I had planned on.

Maintenance was really kind of a non-event

Even though this post ended up being over 1000 words long, I can’t really say much actually happened during my maintenance treatment. In this post I basically shared the whole experience. Hopefully seeing how much of a non-experience maintenance was for me will help others going into maintenance treatment. Going into these situations for the first time can be stressful and learning how it goes for others can help.

Today’s Song: Carry on my Wayward Son

I had a surprise visit from my oldest Son visit today while receiving my Rituxin infusion. He happens to work in the kitchen at the hospital. It was truly great having him come by and say hello. As I think about him this classic song from Kansas comes to mind. As he is growing into quite the good young man I see him experiencing the same bouts of confusion and self-doubt we all went through at that age. He doesn’t realize how good of a person he is really is. This song explains that well:

Bonus Song: Dustin the Wind

This is one of those inside jokes for us. When Dustin was a kid he used to think Dust In the Wind was actually Dustin the Wind and ask me stop calling him the wind when I would sing it. This is a great live/unplugged version of the song.

Why I’ve decided to do maintenance therapy

Later this week I start my first round of maintenance therapy treatments. Choosing whether to actually do maintenance infusions was tough for me. I’ve spoken with other lymphoma cancer patients who also struggled with whether to do maintenance infusions. In this post I will briefly write about what maintenance is and why I am choosing to do maintenance.

What is maintenance therapy

Here is what Lymphoma Action ( a great site out of the UK) has to say about maintenance therapy:

Maintenance therapy is sometimes given after initial treatment has put the lymphoma into remission (no evidence of disease). It is used to make the remission last as long as possible by suppressing any lymphoma cells that can’t be detected by scans after the main treatment has finished.

Chemotherapy is sometimes used as maintenance therapy; however, immunotherapy (treatment with antibodies) is the most common type of maintenance therapy for people with lymphoma.

In my research I’ve found many studies that show maintenance therapy does extend remission for a good number of people. One things maintenance therapy does not do however is extend the expected lifespan of lymphoma patients. Basically maintenance therapy extends the time between the bigger treatment options, such as chemotherapy.

Rituximab is the maintenance therapy drug I’ll be using

Currently Rituximab is the standard drug used for maintenance therapy. This drug is a type of immunotherapy, which means it uses antibodies for treatment. In particular Rituximab is a monoclonal antibody. When writing about my chemo regiment R-CHOP I included this explanation of monoclonal antibodies from cancer research UK:

Monoclonal antibodies target proteins on the surface of cells. Rituximab targets a protein known as CD20. CD20 is found on white blood cells called B cells. It is the B cells that are cancerous in the most common type of non-Hodgkin lymphoma.

Rituximab attaches itself to the B cells and marks them. The cells of the immune system recognize the marked cells and kill them.

I still think it is a very cool concept that a persons own immune system can be used to target cancer cells. Technically this is already supposed to happen, but sometimes the immune system just doesn’t attack cancer like it is designed to. Theoretically maintenance therapy will keep the lymphoma at bay if it begins to spread again.

My particular maintenance plan is to have an infusion every eight weeks for the next two years. That is a lot of sessions. Good thing I have my port!

Maintenance therapy sounds like a good thing, but it has a downside

The concept of maintenance therapy sounds like something every lymphoma patient would want to go through. Being able to push another round of chemotherapy farther into the future is a good thing. But maintenance therapy does have its downsides as well. Actually some countries don’t even offer maintenance therapy due to these downsides and the fact it isn’t proven effective for enough people.

One major downside of maintenance therapy is the side-effects of the drugs used. Rituximab is the standard drug used. The Mayo website has a list of dozens of known side-effects from Rituximab. Here is just part of the list, showing only the common side-effects:

  • Black, tarry stools
  • bleeding gums
  • bloating or swelling of the face, arms, hands, lower legs, or feet
  • blood in the urine or stools
  • blurred vision
  • body aches or pain
  • burning or stinging of the skin
  • chest pain
  • chills
  • confusion
  • cough
  • difficulty with breathing
  • dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
  • drowsiness
  • dry mouth
  • ear congestion
  • fever
  • flushed, dry skin
  • fruit-like breath odor
  • headache
  • hives or welts, itching, rash
  • increased hunger
  • increased thirst
  • increased urination
  • large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or genitals
  • lower back or side pain
  • nausea
  • nervousness
  • noisy breathing
  • pain or tenderness around the eyes and cheekbones
  • painful cold sores or blisters on the lips, nose, eyes, or genitals
  • painful or difficult urination
  • pale skin
  • pinpoint red spots on the skin
  • pounding in the ears
  • seizures
  • slow or fast heartbeat
  • sneezing
  • sore throat
  • sores, ulcers, or white spots in the mouth or on the lips
  • stomach pain
  • stuffy or runny nose
  • sweating
  • swelling of the tongue or throat
  • swollen glands
  • tightness of the chest
  • tingling of the hands or feet
  • troubled breathing with exertion
  • unusual bleeding or bruising
  • unusual tiredness or weakness
  • unusual weight gain or loss
  • vomiting

For anyone curious, that was was 52 common side-effects listed. That doesn’t even include the less common side-effects or other possible side-effects which have yet to actually be linked to rituxumab.

I noted above Rituximab was part of my chemo treatment, being the R part of R-CHOP. My very first round of chemo infusion had to be split into two days. The main reason for doing so was because Rituximab had to be injected very slowly the first time to see if I would react badly to the drug. I’ve heard stories from many lymphoma patients that will experience major side-effects such as their throat closing or major nausea. Before even taking Rituximab a dose of Benadryl is given to the patient, and even that is not enough to hold off side-effects for many people.

At the same time I’ve the stories of many patients on maintenance who have developed long-term health issues because of these infusions. The tiredness and beat-down feeling that comes from chemo seems to be extended by many people taking maintenance therapy. Some patients going through maintenance therapy will get sick constantly and appear to have compromised immune systems. I was actually just speaking with someone that had to stop maintenance therapy after two sessions due to their inability to work anymore. Maintenance therapy is not chemo, but it can be just as damaging to the body for many lymphoma patients.

There are other maintenance therapy drugs out there now. Plus, more are currently being developed. So far I haven’t ready about any without major side-effects. It seems to be a matter of finding the maintenance drug with the least side-effects for a particular person.

So why am I doing maintenance

After going through some of the downsides to maintenance therapy it would seem that nobody would willingly choose to go this route. But just like anything in life it is important to weigh the positives and negatives. I won’t go any further into the negatives, since I think the above paragraphs covered some of those well enough. Instead now I would like to focus on the positives.

First, maintenance therapy does help many patients go longer without treatments such as chemo. It is true that not all patients get a longer remission. But enough patients do that I feel it is worth the risk. If maintenance therapy is able to push my next treatment years into the future I find it worth it. By that time it’s possible a cure could be found for lymphoma. Or even if a cure is not found there may be newer and less invasive treatment options available. There have been a lot of advances in the diagnosis and treatment of lymphoma over the last twenty years. I would expect the next twenty years to see advances we can’t even conceive of at this time.

Second, not all patients on maintenance experience major long-term side-effects. Yes, Rituximab is a nasty drug with some very bad side-effects. But not all patients have the same experience. If I find that I am starting to experience some of the side-effects I’ve read about or heard from other lymphoma patients I will simply end maintenance treatments. Once maintenance treatments begin there is nothing that forces anyone to continue maintenance therapy in the future. This is one area of healthcare where we the patients can actually have some control over our treatment.

Finally, the main reason I am choosing to do maintenance therapy is because of my family. I want to be around to help my kids grow. I want to be there for Ashton as he is going through diagnosis for his health issues. I want to go to Lawson’s baseball games and support him as he takes a continued interest in music and starting a rock band. I want to watch Dustin grow as a young man and smile as he makes the same mistakes we all made as young adults. I want to be there with Mindy experiencing this all together. I took a vow that included “until death do us part” and I plan to make that as far off in the future as possible.

Actually when I first mentioned I was questioning whether to have maintenance Mindy gave me “the look” and the looked like she was going to cry. She acted as if I just said I was wondering whether to keep living. That isn’t what I said or meant. But she seemed shocked and almost angry with me because I wasn’t sure if I wanted to do maintenance therapy. That look had a lot to do with my decision to go ahead with maintenance. If there is anything at all I can do to possibly extend time in remission I will do so. Mindy is truly my soulmate and I want to ensure we have as much time together as possible.

Wednesday is the day

This Wednesday is the day scheduled for my first maintenance therapy. I will admit to having a little bit of nervousness about receiving this infusion. But since I made it through R-CHOP mostly OK (I am still very tired and weak two months later) I feel that Rituximab infusions should go OK. I just keep focusing on the fact I am doing this to hopefully extend quality time with my family.

Today’s song – Just Fishin’

Being around for my family is a big reason I am choosing to do maintenance. I think the song Just Fishin’ sums up part of my reasoning very well. This song from Trace Adkins really shows what is important: spending time with family and creating great memories.

Bonus song – Cats in the cradle

The bonus song is one I’m sure everyone knows. Part of the reason I want to do maintenance is so I can do things like play catch with my boys. I look forward to the day when I sit back and think “he’d grown up just like me, my boy was just like me”.