Drinking alchohol while on chemo and maintenance

A loyal reader of the blog asked if I would do a post about whether I drank alcohol while I went through chemotherapy. The short answer for me is no. But this wouldn’t be much of a blog if I gave quick answers! In this post, I will explain why I didn’t drink during chemo and what I can drink now that I am on maintenance infusions. Further, I should note that most other chemo patients I’ve spoken to about this topic seem to have different answers about whether they do or don’t drink while going through treatment.

My alcohol use before chemo

I should probably briefly mention first that I did very little alcohol drinking in the year leading up to chemo. At the time I didn’t know I had cancer, but I knew there was something very wrong with me. I had problems breathing and was seeing doctors for what was suspected to be a pulmonary issue. At that time I could not drink beer at all. I would get an upset stomach with just one beer. If I had more than one beer my stomach would start to hurt badly. I could drink liquors such as my drink of choice whiskey. But even then I drank very little because of very low energy levels.

No alcohol use during chemo

While going through R-CHOP chemo, I did not even try any alcohol, whether it be beer or liquor. I don’t believe the oncologist said I couldn’t. Basically, I didn’t feel like drinking alcohol. The fatigue and other symptoms I generally felt didn’t leave me feeling like I could drink alcohol. 

Out of curiosity, I just looked in the “Guide to Chemotherapy” given to me by the oncology staff. In there it says:

Small amounts of alcohol can help you relax and increase your appetite. But alcohol may interact with some drugs so that they don’t work as well, or it may make the side effects worse. Be sure to ask your doctor if you can drink beer, wine, or any other alcoholic beverages.

A Guide to Chemotherapy by American Cancer Society

My advice to anyone wanting to drink alcohol while going through chemo is to speak to your oncologist beforehand.

Alcohol use now that I’m on maintenance infusions

I have been on maintenance therapy infusions of Rituximab for about a year now. After about two months of being on maintenance infusions, I did try drinking alcohol again. First, I tried a beer. Not only did it still impact my stomach, but it seemed worse than before. After drinking half a beer, my stomach started to hurt badly. I don’t know if it is a side-effect from chemo, a side-effect from maintenance, or a side-effect of something else I don’t know I have. No matter what the leading cause is, I’ve decided not to try beer again any time soon!

Now liquor I’ve found doesn’t impact my stomach. I don’t appear to have any adverse side-effects from drinking whiskey, rum, or vodka. Actually, I seem to have some pretty good tolerance for drinking liquor, probably due to the weight gain I experienced during chemo. Generally, I don’t drink more than a couple of mixed drinks. But I have found I can drink quite a lot without adverse effects.

If in doubt I would ask a doctor

For anyone reading this wondering if they can or can’t drink alcohol while going through chemo or maintenance, I would say to ask your doctor. Speaking for myself, I haven’t read anything that authoritatively says alcohol use should be avoided. But I know many of the drugs we take are hard on the liver and kidney; therefore, they may interact poorly with alcohol. At the same time, however, life is short! It seems even shorter when you have a cancer diagnosis.

Song of the Day: Mas Tequila

When thinking of liquor, the first thing that came to mind is this excellent party song from Sammy Hagar. Personally, I’m not a fan of Tequila, but I love the heck out of this song.

Bonus Song: Whiskey in the Jar

The Thin Lizzy version of this classic Irish drinking song is one of my favorite songs to listen to at the bar. Actually, I tend to sing along as well when I’ve had a whiskey or two. I also happen to love the Metallica version of this song, but the Thin Lizzy version is still the best, in my opinion.

Bonus Bonus Song: Friends in Low Places

This Garth Brooks song is probably one of the greatest songs to sing with a group at the bar. A drinking bingo night the wife and I went to was basically shut down for almost ten minutes while the bar sang this song. That was a good night…

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.

My troubled port is out, I kind of miss it now

The port that was installed in my chest. You can see the bends where the catheter entered the neck and jugular.

For a little over a year, I have had a port in my chest to receive infusions. Last week I had this port removed. With it gone, I keep finding myself reaching for where the port was and almost missing it. In this post, I will briefly explain why I had the port taken out and why I would miss such a thing being in my chest.

My port was a problem from the start

In early September of 2018, I had my port installed. Usually, getting a port installed is a short routine procedure. My surgery took a long time, and the surgeon ran into multiple problems. I had so many cancerous lymph nodes in my chest that the surgeon couldn’t install the port on either side of my chest and enter a vein right by the heart. Instead, the surgeon had to run the ports catheter up my neck and into my jugular vein. I still remember seeing all the holes in my chest from the different attempts made by the surgeon to install the port. 

My port catheter became retracted

Last fall, while I was still going through chemo, I had an appointment with my pulmonary doctor for long-term breathing issues, which have plagued me for many years. During that appointment, an x-ray tech took a picture of my lungs, and my port because they are in the same place. The good news from that x-ray is that no fluid was present in my lungs. But at the same time, the x-ray notes mentioned something about the port catheter being “retracted.” In this post, I tell the tale of the retracted port. The catheter going from the port to my heart had a loop in it; that was causing the retraction. I’ve also included my drawing of what the retracted port catheter looked like in the x-ray. 

Knowing about the retracted port catheter apparently caused my problems to start. During round five of chemo (Dec 5, 2018), my port would not allow blood to be drawn. It would allow fluids into my body, but blood could not be drawn out of the body. Another x-ray was taken. The loop in the catheter was gone. Instead of looped, the catheter was folded up like a J. My post about that experience is here

From there on, it was hit and miss whether my port would allow blood to be drawn. The port did get me through all six rounds of chemotherapy and almost a year of maintenance infusions. It was quite annoying on the days the port did not work. I would have to sit in weird positions, pretend to cough, and a multitude of other things in the hopes the catheter would allow blood draws.

The final straw.

During my latest round of maintenance, the nurse was unable once again to get a blood return. Unlike previous times, this time, there wouldn’t even be a small hint of red. Nothing at all would return. It was at this point the oncology staff and I decided it was time for the port to go. The port was there to protect my veins from a couple of hazardous chemo drugs I had last year. For maintenance infusions, the port is nice but is not needed.

Getting the port taken out

After getting the OK from the doctor, the oncology staff made an appointment for my port to be removed. Within the week, I would have my port out. That appointment happened last week. Honestly, there is nothing to report about this appointment. A local numbing shot was used, and he took it out in his small procedure room. No hospital check-in was required.

I think the whole procedure took about twenty minutes. The surgeon made a small incision to remove the port. With the catheter still attached to the port, the surgeon then pulled the catheter out. There was a weird tingling feeling as the surgeon pulled the catheter out. That is all there is to report about this procedure. Luckily it went much smoother than the surgery to install the port.

Now I miss the port

It has been a week now that I’ve had the port out. Oddly I’ve found myself missing the port. Over the last year, the port had indeed become a part of me. I mean that more in a spiritual way because obviously, it was a physical part of me. When I was stressed out for any reason, I would find myself rubbing my fingers over the port. I would also rub the port area when I was trying to think of how to phrase a sentence while writing. Looking back, I don’t think I realized I was doing this. But I can remember doing it often enough that I know I must have been rubbing the port a lot.

Oddly I think the port had become something of a worry stone for me. This odd relationship with my port created something of a situation after getting the port taken out. While the incision site didn’t hurt, it was tender. I found myself rubbing the area and getting reminded by a shot of pain that no port was there anymore. Now that the tenderness is gone, I think I’ve finally retrained myself not to try rubbing the port.

Hopefully, I won’t need another port

Even though I kind of weirdly find myself missing the port, I do not want another port installed. If that were to happen, it would mean I’m starting full-blown chemo again. My biggest hope right now is that I will be in remission long enough that a better treatment method will be available for me. I hope this for all cancer patients. Yes, there are some great newer treatments, such as CAR-T therapy, but even those treatments are failing on some patients. I genuinely hope for a day where ports are no longer necessary for cancer patients.

Song of the Day – Mr Roboto

At a cancer charity event a while back, I was talking with a young child who also had a port installed. He felt an instant connection to me when he found out I also had a port installed. One thing we did was sing the chorus of this song together since the ports make us cyborgs.

Bonus songs – Christmas concert

The bonus song has nothing to do with this post. It is the three videos I took of my two youngest sons at their school’s Christmas Concert. They are a big part of why I have been doing everything I can to fight off cancer.

The first one is my middle song Lawson playing percussion with the HS band. In the fourth song, he plays the spoons (like out of the kitchen drawer spoons).

Up next is Lawson singing with the HS Choir.

And last, but not least, is my youngest son Ashton singing with the 7th-grade choir.

How the fifth round of maintenance went

Two days ago I had my fifth round maintenance therapy. I’ve had some followers of the blog ask me to write about my latest round. They wish for me to compare my current experience to that of my first round. Hopefully sharing this will give those going through maintenance, and family members of those going through maintenance, an idea of what ongoing treatments are like. 

Maintenance always starts with a vitals check.

Every maintenance always begins the same way. The nurse will check my weight. This part of maintenance is the part I dread the most. While going through chemo, I gained a lot of weight. Going through maintenance, I have been unable to lose much of that increased weight. I know I should be happy due to the number of people who suffer massive weight loss. But this is still one of my most significant stresses, and no matter how much I try, it doesn’t seem I can lose weight.

The nurse then brings me into a room and checks my vitals. My blood pressure, oxygen, and temperature are the main vitals checked by the nurse. I never really worry about this part. My vitals are usually right in the range they need to be. Actually I this part of the appointment annoys my wife. She has high blood pressure and has never had readings as good as mine.

Accessing the port and drawing blood.

While checking my weight is the most stressful part of maintenance, accessing the port is a close second. My port has been a pain in my rear since getting it installed (well, actually in my chest). The port’s catheter had become retracted partway through chemo. Since then, it has been hit and miss as to whether the port will work. 

During the previous round of maintenance, my port worked with no problems. This past success led me to believe the port would have issues this time. What I mean by the port having issues is that blood will not ‘return’ when the nurse tries to draw blood through the port. Any time the port doesn’t work, I have to sit in weird positions and move my arms and neck around in the hope that blood will return through the port. Sometimes that works. If not, I get about a dozen syringes of a cleaner sent through the port to open it up. That usually eventually works. But it takes a lot of time, and each time the port doesn’t work I want to have the dang thing taken out and use a regular IV for now on. Technically since I am no longer doing regular chemo, I no longer need the port. It is just a lot more convenient to use than an IV.

As luck would have it though, my port worked! This was two times in a row my port worked with no issues. Maybe my port knew I was looking to get rid of it and decided its time to behave. It is quite possible the retraction that had been there has disappeared completely. Whatever the reason my port is now functioning properly. The nurse was able to draw blood with no problems.

As luck would have it though, my port worked! Two times in a row my port worked with no issues! Maybe my port knew I was looking to get rid of it and decided its time to behave. The retraction that had been there may have disappeared altogether. For whatever reason, my port is now functioning correctly. The nurse was able to draw blood with no problems.

Time to visit with the nurse.

After the blood draw, there is a wait while the lab does its testing to make sure I can receive my maintenance infusion. During that time I meet with either the oncologist or the CNP. Both of them have my utmost respect and trust. In this case it was the CNP’s turn to try getting the truth out of me. I say that because I don’t always mention all of my symptoms. During those times, my wife will pipe in and happily let the nurse or doctor know what I had failed to say.

During this visit, I let the CNP know my symptoms after the previous round. MY latest symptoms include a couple of days of absolutely no sleep; which was likely caused by the steroids. Then I would have a flu-like feeling throughout my body for about a week or two. For the rest of the eight weeks I would have low energy and a constant cough. The low energy and cough seem to get better the week before getting my next maintenance infusion.

After letting the CNP know I hadn’t had any other notable event, my wife spoke up. She mentioned a few weeks ago that I had banged my heel very hard and that I had possibly broken it. I explained I don’t think it had broken, just very badly bruised. Neither my wife or the CNP seemed impressed that I failed to have it checked out. But having enough of these types of injuries, I already knew what I had to do. Plus, I have had so many scans over the last year I didn’t want another x-ray. I will admit though; my heel hurt pretty badly this previous weekend walking around the convention center in Sioux Falls all day every day.

The nurse then talked to me about my sleeping issues. I won’t go into that in this post and will instead do a separate post about it in the future. 

A surprise visit from the oncologist.

I usually don’t see the CNP and Oncologist during the same appointment. In this case, the oncologist came in to let me know my numbers had mostly looked good from the blood draw. She has concerns that my hemoglobin continues to go higher each appointment. My rising hemoglobin counts will be another topic I will save for a future post.

It is also possible the oncologist made an appearance because I had a camera crew following me this day, and they wanted to have her in some of the video footage. I had a camera crew with me to shoot a marketing piece for the hospital. Since I am so open about my experience on this blog, I had no problems letting them film me.

Time for the pretreatment drugs.

After the initial vital checks and interrogations, I am then led to an infusion room. These pretreatment drugs are used to prevent the normal reactions many patients have while receiving the maintenance drug Rituximab (Rituxin). First, I am given two Tylenol caplets and injected with Benadryl through my port. A saline bag is started and will continue to drip for the rest of the appointment, and I receive a small pretreatment bag of steroids via my port. Most people who use the Tylenol, Benadryl, and steroid mix seem to have few if any issues going through maintenance.

My vitals are rechecked before proceeding with the actual maintenance infusion. IT is at this point I start getting very tired. Apparently I am very susceptible to the “may cause drowsiness” portion of Benadryl. The rest of the appointment goes very quickly for me because I am going in an out of sleep.

Finally, the actual infusion of Rituxin

At this point, I finally receive my infusion of Rituxin. The infusion is split into two steps. First, they drip the Rituxin into my port slowly for a half hour. By going slow, any allergic reactions can be observed and dealt with immediately. A nurse will also recheck my vitals to ensure nothing is going wrong. As usual, there are no problems with this initial injection of Rituxin.

The rest of the Rituxin bag is then infused into my port over the next hour. I rarely remember this portion of maintenance due to the Benadryl. This time, in particular, it felt like about five minutes instead of a full hour. I don’t remember it this time, but I know they also check my vitals one last time. My vitals must have been OK because I was then released.

As usual, maintenance was a nonevent.

Maintenance day is pretty boring. Usually, it is just my vitals getting checked a lot, speaking with the oncologist or CNP, and then having all the drugs forced into my body. Part of me is happy maintenance is a nonevent. I’ve spoken with patients that had terrible reactions to Rituxin. The worse case I’ve heard of was a cancer patient whose throat closed, and heart started beating irregularly. Luckily nothing like that has happened to me when receiving Rituxin.

Hopefully, sharing this will alleviate any of the fears for other people who are about to go through maintenance. For most people, it is a nonevent. The only person I think maintenance treatment is hard on is the loved one that comes along for the appointment. In this case, my wife is the loved one there with me and watching over me as I sleep through the infusion.

Song of the day.

Today’s song is only marginally related to the post. When I writing about a possible broken bone the line ” Muscle and blood and skin and bones” came to my mind. I love this classic song from Tennessee Ernie Ford. Luckily I am now self-employed so I don’t have to worry about owing my soul to the company store..

Bonus Song

My song of the day really had nothing to do with today’s post. So I thought I would make my second song even less related to today’s. The Highwaymen is the greatest super-group ever to have been assembled and this song was their crowning achievement. Even though this song isn’t related I often find myself singing this song. In particular I will sing “But I am still alive”. Actually, maybe this song is related…

How lack of sleep has impacted my personal life

Sleeping on the recliner has become my new reality

Earlier this week I shared my current state of sleeplessness. This sleeplessness has plagued me since going through chemotherapy and now while I am going through maintenance infusions (only a year and half of infusions left). In this post I will share a few ways this lack of sleep has been impacting my personal life.

Avoiding going out in public

Recently I have tended to avoid going out in public. It just takes too much energy to look alert; and pretending to feel good takes a lot of energy! Plus I have the constant cough (part of the reason I can’t sleep) which tends to make other people nervous. A few weeks ago while having breakfast with my family at Perkins, I went into a coughing fit and I could overhear someone nearby saying “someone that sick shouldn’t be at a restaurant.” I know I also looked quite tired at the time because I didn’t drink my normal energy drink that I like to use prior to going out in public. Part of me agreed with the person making the comment that I shouldn’t be out in public.

There are other factors that also make me nervous to go out in public. One factor is the two front teeth I am missing (chemo was tremendously hard on my teeth). I won’t have these teeth fixed for a couple more months. Trying to talk with teeth missing is not an experience I enjoy. That means that when I do go out in public I try to avoid talking.

The boys are afraid to speak with me at times

Any time I appear to be tired (which seems like always) my boys avoid speaking with me. Lately I have become very short tempered when asked questions. I know it is because of my lack of sleep and I am just too mentally tired to try thinking of answers. But I also know the boys are trying their best to keep me from snapping at them, and so they try to avoid speaking to me when I am tired. Of course the steroids I take with each round of maintenance probably makes my temperment even worse.

I have tried to battle my short temper with the boys. Each morning I drink a natural energy drink to bring myself up to full alertness. Throughout the day I will try other drinks or supplements to keep myself alert. By keeping myself alert throughout the day I have noticed I tend to get less moody. The only problem is once these supplements wear off I crash hard and feel like I am in a daze. Unfortunately I don’t crash hard enough to actually sleep. At most I will go in and out of short spurts of dozing.

Unable to sleep in my own bed

When laying down my coughing appears to get worse. Due to that I spend most nights on my recliner. I don’t necessarily sleep much better on the recliner. But in my head I have felt this is better because at least I’m not keeping my wife awake. Of course that puts an extra strain on the relationship with my wife.

My wife and I love each other very much. We both have talked about this current situation with me sleeping in the recliner and both agree it is a good short-term solution. But we have been married enough years that we are used to sleeping in the same bed and feel almost lost without having each other nearby. She won’t say anything, but I know when I first started sleeping on the recliner that she feared I was sleeping elsewhere because of something she did. That of course isn’t true. But nonetheless I know she felt that way.

Plus my sleeping in another bed increases the feeling she has that I am going away soon. There have been some scares with my cancer diagnosis and treatment. She wants to spend as much time with me now, just in case something happens and I am no longer around. My sleeping in another room seems to make her feel that I am almost gone. That is another reason I am giving on up sleeping in the recliner.

Hopefully my personal life will return to normal soon

I am hoping my sleep patterns will go somewhat back to normal soon. My current sleeplessness is just having too big of an impact on my personal life. In particular I am afraid that the relationships I have with my wife and kids could become strained if something doesn’t change. Ironically as I write this post I just received a call from a sleep specialist I had been referred to. Hopefully he will be able to figure something out for me.

Song of the day

I’m not much of a drinker these days. But this great song from George Thorogood sums up my feelings about going out in public.

Bonus song

The bonus song doesn’t have a lot to do with today’s post. There are times I feel like a zombie, which brings this classic 80’s track to mind. I always thought the Hooters were an underrated group. This particular line from the song does come to mind though:

Sitting in the dark, living all by themselves You don’t have to hide anymore

Tired of being tired

I’ll often fall asleep while sitting around, but only for a couple of minutes at a time.

A constant theme from my cancer experience has been a lack of quality sleep. The lack of sleep has definitely impacted my personal and professional life immensely. Actually the reason I haven’t really blogged in the last few weeks is because I have felt too tired to do so (of course the other reason is I am working on creating a new podcast and a new video series). In this post I will briefly explain my current sleep habits. Later this week I will highlight how my personal and professional life has been impacted. Sharing this may help some other cancer patients in similar situations understand they are not alone.

Current sleep status (or lack of sleep status)

Currently I get only about three to four hours of sleep a night. Additionally, each week I will go one or two nights with no sleep at all. My current sleep issues seem to stem from multiple causes. First, I seem to have lost the ability to fall asleep. And secondly, I have a cough that won’t go away; which in turn wakes me up if I do happen to fall asleep.

As to not being able to fall asleep I have tried many cures. People have shared with me what works for them and I have tried almost everything that has been suggested. The only real thing that seems to work is to become so exhausted that my body has no choice other than to fall asleep. Part of me believes I also have problems going to sleep because I know I will be up shortly anyhow, so why bother trying.

Which leads to my cough. Since being on chemo, and now Rituximab (my maintenance drug), I have a cough that won’t go away. Sometimes I can go up to an hour without coughing. Then at other times I cough at least every five minutes. Laying down seems to make the coughing worse. Due to this I now sleep on a recliner, so I can keep my head and chest higher. This doesn’t really seem to help much at all. But I continue to do so because I feel I keep my wife awake all night when I sleep in the bed. I’m probably going to give up on the recliner idea and go back to sleeping in bed however. I fear if I spend too much time away from the bedroom it will make my wife feel she is somehow to blame; which is completely the wrong signal I want to send.

Results from the pulmonary doctor

I have gone through two sleep studies. Recently I had an appointment with my pulmonary doctor about my cough and sleep study results. He noted that on average I get about 9 non-breathing events per hour going through the sleep study. However when I entered REM sleep I would get about 66 non-breathing events per hour. He noted this is very dangerous and is the reason I was prescribed a CPAP. Since staring to use the CPAP he has noted I only get a few non-breathing events per hour, that is whether or not I am in REM sleep. So the CPAP seems to be doing what it is supposed to. But at the same time it has not fixed my other sleeping issues, other than to make sure I stay in REM sleep a little longer. I will admit I do feel better rested using the CPAP, even if the overall amount of sleep I get is not much longer.

Other than the breathing while sleeping, none of the tests or scans ordered by the pulmonary doctor have yielded any results. There are some minor lung issues that have to do with being a lifelong smoker. But nothing he is seeing would explain my constant cough.

Currently I believe the cough is just a side-effect of the maintenance drug Rituximab that gets infused into my body every eight weeks. Actually for about two weeks leading up to my maintenance infusions the coughing does seem to become less. Then about five days after my infusions the cough begins to get worse. I have spoken with other cancer patients who are experiencing the same side-effect with Rituximab. Since the maintenance infusions will likely keep me in remission longer, I guess I’ll just put up with this annoying side-effect.

Up next: how lack of sleep is impacting my life

In this post I briefly shared the current status of my sleeplessness. Later this week I will share how this lack of sleep is impacting my personal and professional life. This will likely be in two posts. Hopefully sharing my experience may help other cancer patients understand they are not alone. And maybe I’ll receive a sleep tip I haven’t tried yet that might actually work. I look forward to day when I am no longer tired of of being tired.

Song of the day

Today’s song really doesn’t have much to do with the bog post. Recently Ric Ocasek, lead singer for The Cars, died and I thought I would post one of my favorite songs from them. I’ve never been a huge fan of The Cars, but they definitely had some good songs. Plus I think this is great example of an 80’s music video.

Bonus song

The bonus song also has nothing to do with today’s post, other than the fact pulmonary doctors deal with lungs. This classic/weird song from Jethro Tull is just timeless. I like this version because I shows Ian Anderson in action.

Bonus, Bonus song

Jethro Tull has another song that comes to mind when talking about lungs and breathing. Plus this is another chance to see Ian Anderson in action.

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…

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.