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…

Working on being a good dad and husband – part 2 of 2

My wonderful family!

Yesterday I posted about my being a workaholic before being diagnosed with cancer. Due to my workaholic ways, I spent very little time focused on being a dad or husband. In today’s post, I will share a few specific areas I have refocused on my family over the last year. Many cancer patients I have spoken to are in similar situations. A lot of non-cancer patients are as well in today’s world. My hope in sharing this post is that others will look at their life and try to find ways that work for them to refocus on the family.  

My wife says I was too hard on myself.

Before going on, I should mention that my wife says I was too hard on myself in yesterday’s post. I don’t agree with her. Yes, over the years I would try to find some time to be with my family. But even during those times I would be on my smartphone or a tablet working. Just being there physically doesn’t mean I was always there mentally.

I am actually present for kids’ events.

One significant change I’ve made is to make sure I am not only attending the school, sport, or other events for my children; but I am also giving my full attention. Previously I would be working on my phone. Occasionally at kids’ activities I would look up once in a while and maybe snap a picture for Facebook. People seeing my Facebook page at that time probably thought I was a much better dad than I actually was. Now I’m actively engaged in whatever the event is and genuinely cheering when I should be.

An excellent example of this came from last October when my middle son participated in a marching band competition. I did a post on this after the event. Even though my immune system at the time was weak, and I honestly wasn’t feeling very well, nothing was going to keep me from watching my son march in the competition. Over the last year, I have made sure to attend as many events as I could to watch him play with the marching band or pep band. 

I am finding time to spend with each kid.

In case I forgot to mention it, I have three boys. They are Dustin (22), Lawson (14), and Ashton (12). One of the great things about being a dad is to see just how different each kid is. I am trying to try finding ways to spend time with them in a way that is special to each of us.

Spending time with my youngest son Ashton.

Asthon and I attending SiouxperCon.

Ashton is the kid with which I spend the most time. Due to an as yet diagnosed hypermobility issue, he has to stay at home on his bad days. Because of his condition, he occasionally misses school or other events. During those days, I try to spend some time watching cheesy sci-fi or horror movies. We love to watch these movies together and heckle them (think MST3k).

This past weekend we went to a convention called SiouxperCon. On day two we both dressed in costume. I have included a picture of us in costume in this article. Over the next year an activity we plan to do together is to build costumes. We plan to wear them at the next convention. He has a couple of anime characters in mind, and I have a transformer build I am looking to attempt. Building these costumes will be a great time spent together planning how to make each costume; followed the fun of actually trying to implement those plans. 

Spending time with the middle child Lawson.

A picture of Lawson when we attended JazzFest last year. Going to concerts and music festivals with Lawson is one of my favorite things in the world to do.

My middle son Lawson is very into music. Over the last two years, he has been playing drums for the High School band. Plus he now has a drum kit at home, on which he has learned a variety of rock and jazz songs. Additionally, he plays guitar for a rock band he formed with some friends. Up until a month ago I spent a lot of time with Lawson driving to various rock band practices and high school band events. That was a great time spent with him in which we would talk about different bands and debate musical trivia. During the summer it became even better because he had his learners permit and he drove me everywhere (South Dakota I believe is the last state in the US that allows kids to drive at 14). It is hard to imagine better one on one time with a kid.

Unfortunately, Lawson now is past the 90 day period where he needs a parent to be with him. So now Lawson is driving to his band practices and school events on his own. To make up for this change, I am teaching myself to play bass guitar. I plan to hopefully jam out with him a night or two every week. I can’t think of any better way to spend time with Lawson.

Spending time with the adult child Dustin.

Dustin keeping mom warm at the little boys homecoming parade last year. I love this picture because it shows what great kid (or rather great young man) Dustin is.

It’s hard for me to think of Dustin as a child anymore. I see him as a young man out on his own. Because he is out on his own, it has become harder to find ways to spend time with him. As luck would have it, I found a perfect way to bond with him through gaming. Growing up in the ’80s and well into the ’90s, I used to play Dungeons and Dragons. In the early 2000s life happened, and I stopped playing this game which I so intensely loved. Over the last few years Dustin has been playing Dungeons and Dragons. His love of gaming presented the perfect opportunity for me to spend more time with him!

At first, I was afraid to ask to be a part of Dustin’s gaming group. Would he want the old man to around? Then I found out the group he is a part of includes people of all ages. Not only was Dustin OK with me joining the group, he asked me to be part of the group. I get the impression he had asked me in the past to be part of the group. But I think the old me didn’t hear what he was saying, and I probably said something like “yeah, someday I will.” Playing Dungeons and Dragons with the group has been great. On the days he is Dungeon Master, I get to see his imagination at work. I become so proud of him. Additionally, my youngest son Ashton is part of the group, so I get more time with two sons in an activity we all love.

Planting a garden with the wife.

A picture with my soulmate Mindy.

One thing I have tried to do this year I spend more time with my wife, Mindy. She truly is my best friend and soul mate. Unfortunately, for several years I felt we didn’t get to spend enough time together. That is changing. One way we have spent more time together in the last two years is through gardening. Throughout the summer we spent countless hours tilling, planting, and weeding. As summer continued, we did more cultivating and weeding. Did I mention the weeding? Holy cow weeds like to grow!

Towards the end of summer Mindy and I started to harvest and can a lot of what we planted. I can’t remember the exact number off the top of my head, but we canned dozens of quarts of pickles. Plus we canned beets, salsa, chili sauce, pasta sauce, and green beans. Canning all of that produce takes a lot of time. We would spend hours upon hours just talking and watching TV as we canned. I looked forward to canning because it was some good quality time with my soulmate. Now that winter is here I hope we can figure out some similar activity to spend time together. I might sound cheesy, but I feel growing a garden has caused my relationship with Mindy to grow as well.

Hopefully it will last this time.

I hope that I will not once again fall back into my workaholic lifestyle. I have been trying so hard, and I believe I am becoming the dad and husband I want to be. Due to recovery from chemotherapy and my ongoing maintenance infusions, I do still have physical limitations. There are days I am too exhausted to do anything with my family. I have maintenance tomorrow, so I know coming up I will have some deficient energy days (once the steroids wear off). But I think if I can keep focused on the family during my good days things will continue down the path they currently are.

I hope anyone reading this post will think of one or two ways to get closer to their family. For me the key has been to find connections I have with each family member and try growing that into a joint activity. There are other ways I am spending time with each family member that I didn’t document. But I think I shared enough to give a general idea of what I’m saying. Having cancer makes us face our mortality. To me, the best way to face mortality is to make the best of our time with family while we are still alive.

PS. Once again, I broke my rule of keeping posts under 1000 words.

Song of the Day

I can’t write a good intro to this song explaining how it relates to the post without tears flowing. So without further ado here is That’s My Job from the great Conway Twitty.

Bonus Song

The bonus song is how I feel about my soulmate Mindy.

Being a bad dad and husband – part 1 of 2

How I believe my wife and kids saw me prior to cancer.

On this blog, I have shared a lot about my cancer experience. It seems most of what I write about is negative. The negative direction of my blog is mostly due to the fact I’m trying to give others an idea of what they may experience when a loved one has cancer. Today’s post will be different in that it focuses on a negative aspect of my life from before being diagnosed with cancer. In this post, I will share how being a workaholic almost prevented me from ever being a good father or husband. Tomorrow I will have part two of this post, which will focus on what I am doing now to be the father and husband I wish I had always been.

Work was my life

I used to be a workaholic. Before moving back to South Dakota about seven years ago, I would spend almost every moment working. As a network engineer/project manager I always had work to do. There were a couple of jobs and consulting work I would do that had me traveling all over the Midwest US and Canada. There was one year, in particular, I had logged over two hundred nights staying in a hotel. That was time spent away from my family. One of my sons was a baby at that time, and he refused to let me feed him because he didn’t know me. Even when I was home, I was never really home. I would be logged onto the computer and creating scripts or router configs for customers. I lived for my work and barely noticed I had a family.

When my family moved back to South Dakota I left the tech world. I was now spending more time with the family. There was hardly a sporting or school event I would miss. I was going camping with the whole family. I spent some time helping my wife grow her accounting business. On the side I started blogging about South Dakota politics. Within a couple of years, I was spending at least eighty hours a week writing about politics on my blog and acting as a ghostwriter for people in the political and business world. Plus I was traveling all over to record events and interview politicians. I had changed from being a workaholic in the tech world to being a workaholic as a writer. Nothing substantial had changed.

My family suffered due to my focus on work

I love my wife and kids, and I feel that I have always loved them. But the old me chose the wrong method of showing my love. To be what I thought of as a good provider, I felt I had to work continuously. It never occurred to me that what my wife and kids wanted was more time with me. I remember wishing I could spend more time with the family. Instead of spending more time with the family, I would work longer to be the provider I thought they wanted.

In this post, I won’t go any further into how my family suffered. I imagine almost anyone can imagine how tough it is for a family to be an actual family when the dad/husband is never there. Plus I can think of dozens of times off the top of my head where I know I disappointed my boys by not being there.

Then cancer happened

My focus on family started before I became diagnosed with cancer. During the summer of 2018 I began to have significant breathing problems coupled with a lack of energy (documented in this post). I thought I was going to die. That summer, I spent as much time as I could with my family. I wasn’t able to do much with them due to my breathing problems. But I still tried to spend what I thought were my last days with my family. The biggest joy for me that summer was traveling around the state watching my two younger sons play baseball. 

Monday, August 27, is when I got the news from my doctor that I had cancer. Specifically, I found out I have Stage 2 Follicular Lymphoma. Then I saw “the fireworks” on September 5 letting me know just how bad my cancer was. Since September 5 of last year, I have not stopped thinking about how much of my families life I have missed. Over the last year, I have been trying to find ways to make up for that lost time. 

Failure as a dad and husband

As I look over the last fifteen years of marriage, I cannot help but feel I was a failure as a dad and husband. In my mind I was a good provider for my family. But in reality I was rarely a true father or husband. At the time I thought just making appearances at certain events was enough for my family. I was wrong. I wish I could say that my family missed me, but I don’t think that is true. Looking back, I don’t think my wife and kids were around me enough to actually miss me. I was the guy who would come and go and make the occasional bad joke (on the plus side they get to hear a lot more of my bad jokes now!).

I am also amazed my wife did not divorce me during this period. We both love each other very much. But I left the marriage in all ways that matter. There were times over the years I would be around for a little bit longer, and I would be more of an attentive husband. But that would never last long, and I would also return focus on work.

Looking back, I can recall dozens of ways I was a poor father and husband. But I won’t go into any more of those ways in this post. I imagine anyone reading this post an understand by now that I was not there for my family.

Refocus on being a true father and husband

As I close this post, I hope to close the dark period of my life where I chose not to be a true husband or dad. Unfortunately, it took cancer for me to realize I was not focusing on my family in the way I should have been. Part of me still feels that death is coming closer, and I can’t help but have some regrets about the lack of being an attentive father and husband. But at the same time, I have renewed focus on spending more time with my family and not falling into the trap of being a workaholic again. My next post will focus on what I am doing differently now to be the father and husband I should always have been.

Song of the day

The song that ran through my head while writing this post is a beautiful song by Zane Williams. In particular this part of the song hits close to home:

And for every dollar I earn there’s a lesson you learn without me there
And every day I’m on the go I’m prayin’ that you know your Daddy cared
‘Cause the hardest part about workin’ hard ain’t the bills I gotta pay
It’s you growin’ up while I was away

There is also a version of this song performed by Pat Green. But I happen to like the original version by Zane just a little better.

Bonus song of the day

Of course taking about a dad who was never there brings Harry Chapin’s classic Cat’s in the Cradle to mind. Instead of sharing the original, I thought I would share what I feel is a great cover by Ugly Kid Joe.

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…

Dealing with constant tests and procedures

Some days I feel like a pincushion.

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

It seems the doctors constant want to scan or poke me

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

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

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

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

Not wanting to tell the doctor when something new comes up

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

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

Stress added to family

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

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

Things likely won’t change

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

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

Today’s Song: I don’t need no doctor!

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

Bonus Track: Under the Blade

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

Losing a friend to cancer

Last week I mentioned that I had lost the ability to write for a few months. There were many factors that likely led to this condition. Looking back I believe one of the biggest impacts on my state of mind had to do with losing a friend to cancer. In this post I will share that experience.

I’ve mentioned many times on this site that I plan to do a podcast. As fate would have it I found another person via a Facebook cancer support group who shared my same vision for doing a podcast. For the purpose of this post I am going to call her Jane. This is not her real name, but I explain later on why I can’t use her real name.

We recently met to work on a podcast

Jane and I both wanted to do a podcast dealing with the family side of a cancer diagnosis. In the podcast we planned to have guests that included cancer patients and cancer family members. I have found sharing my experience on this blog has helped a lot of cancer family members out. Together Jane and I thought we could do even more to help cancer family members understand they are not alone. Plus, Jane had some experience in radio years ago and had what I would consider a perfect voice for a podcast.

Jane and I spent much of January, February, and March going through various ideas about what to do with the podcast. Due to my tech background I spent a lot of time figuring out the “hows” of doing a podcast; while Jane worked on creating podcast outlines. The whole process was great and I enjoyed working with her on this project. Even though we only knew each other a few months, I considered her a very close friend by the end of March.

As early April approached we decided it was time to take our idea to the next step. Jane and I decided the next step would be to contact a podcast guru I know of in Sioux Falls, SD, who is the media genius behind The Sioux Empire Podcast Network. Our plan was to speak with the guru and present him with our ideas. Perhaps he could give us any pointers and we hoped our podcast might be a good fit to include with his current lineup of podcasts. Accordingly I had finished the draft of a proposal and waited for Jane to give her input. That input never came.

Worrying about a friend

After a couple of days of no reply from Jane I began to get worried. I knew she had recently fallen out of remission and was going to be going through chemotherapy again. Even though we had become friends, I actually know very little about the current condition or history of her cancer. Jane really didn’t like to talk about her health issues and I respected that. Now that I was getting no reply back from her I kept wondering just how bad her fall from remission was and worrying about whether she would be OK.

Days turned into a couple of weeks and I still had not heard from her. I messaged her on Facebook and left a couple of voicemails on her cell phone and land line. No reply ever came from Jane. Her Facebook presence had simply stopped the day I sent her the proposal. As each day progressed I got more and more worried about her. Looking back I really should have shared my worries with my wonderful wife. But it was the busy season at our tax office and I did not want to bother her. I think my lack of sharing this with my wife caused my emotional state to become even worse.

Finally I get a reply of sorts

Just over two weeks after I last heard from Jane I finally got a phone call. The call came from Jane’s granddaughter. It was not a good call. During the call I found out Jane had died gong through surgery. I was devastated after hearing this. Even though I had my own cancer experience, I was not really prepared for the possibility I could lose a friend to cancer. I didn’t know what to say.

Jane’s granddaughter then began yelling on the phone. Due to my being stunned from the news of Jane’s death and my bad hearing I actually didn’t catch all of what she was saying. But I did get the important parts. I found out that Jane had previously decided against having any more procedures done. But after associating with me and working on this podcast project, Jane decided she wanted to go through with a risky procedure in order to better battle cancer.

It was then Jane’s granddaughter let me know the family blamed the podcast project for her death. They believed if Jane had not done such a risky procedure that she would still be around. Further she said I was very evil for giving her grandmother false hope and that I was personally to blame for her death. That struck me hard. She went on further to state that I was not allowed to use Jane as part of my blog and that her family would be watching to be sure I don’t. I have respected that wish by changing Jane’s name, but nothing else has been changed.

If I recall correctly, the only thing I said towards the end of the phone call was “what”. After that Jane’s granddaughter yelled something else I couldn’t understand and hung up the phone. That was the last ever heard from Jane’s family, and I doubt I will ever hear more from them again.

Depression set in

I felt as if I had just been accused of murder. Well I think I really had been accused of murder. Not only had I just lost a friend to cancer, but I was being told it was my fault. I didn’t know how to deal with this. I didn’t know how I should feel or what I should do.

Instead of seeking help from my wife or someone else I simply kept it bottled inside. I did not want to bother anyone with my problem. Part of me also felt guilty for being the cause of Jane’s death. The intellectual part of me knew I had nothing to do with Jane’s passing. But a big part of my heart kept telling me the granddaughter was right in accusing me of causing Jane’s death. Even today I still somewhat feel that way.

As April moved on I became more and more withdrawn. I would put up a front when out in public so people wouldn’t know what was going on. But I know some people, such as my wife, knew there was something wrong. Sadly I never shared this experience with anyone until writing this post. Had I done so sooner I believe depression may not have set in so deep.

Moving forward

Going forward there were other factors I believe led to my bout with depression. However the death of Jane was the big event that really started my downward spiral. Even today I do not believe my depression is completely gone. But I know I am much better emotionally now than I was just a few months ago. Part of me hopes by writing about the past few moths will help me work through any lingering depression.

PS

This post took three days to write and rewrite. Just today I removed almost 1,000 words talking about how I felt. None of it made sense, so it had to be cut. I will possibly try in a future post try to pass on what I was feeling and experiencing.

Today’s song

It is my custom to play this Terry Jacks song when a friend or relative dies…

Bonus song

The podcast will happen. I am currently working on finding a new partner for the podcast. She would have wanted that. Sing it Freddie…

Getting used to the CPAP mask

During my last post I briefly shared my experience going through two sleep studies. Overall I didn’t particularly enjoy the experience. But I did get some good sleep on the second sleep study. In this post I will share my experience about trying to get used to the CPAP mask.

First, a brief word about why this ties into cancer

Some people have asked why I am sharing my sleep study experiences on a blog about cancer. To them I say it is because going through cancer and chemo have completely changed how I sleep at night. Admittedly I’ve had sleep issues for many years. Being deployed to Bosnia while in the Army back in ’95-’96 was really the start of my sleep issues. But since going through chemo I have almost come to dread nighttime. I am tired of not knowing if I will be able to get enough sleep. I’ve spoken to many other cancer patients who have experienced the same problems since going through chemo. Many cancer patients seem destined to go through sleep studies.

Picking up the CPAP machine

Once the doctor ordered the CPAP machine I had to set up an appointment with the medical supply store. The appointment didn’t take long, about twenty minutes if I recall correctly. Most of this time was spent adjusting the mask to my face and getting a crash course on how to use and maintain the CPAP machine.

I would say the only problem we had when fitting the mask was deciding which size of mask to use. I happened to fall directly between two different sizes. The large mask was very uncomfortable, and the medium mask just seemed too small. After trying both masks on multiple times I ended up getting the medium mask. A month later I came back to get the large mask due to pain in my teeth (that had to do with an abscessed tooth, and will be the topic of a future post). In the end I went back to the medium mask and am happy with that. I only mention all of that because I want to relay the fact it is important to find the best size of mask in order for the CPAP experience to work optimally.

Luckily insurance paid for my CPAP machine, mask, and accessories 100%. Thanks to chemo and maintenance all of my out of pocket expenses were met back in January. I guess there is an upside to going through expensive medical proceedures.

I should note my wife was also recently prescribed a CPAP machine. When she went to pick up the machine she found out that it would cost hundreds of dollars due to insurance not covering the machine. This is the same insurance plan I am on. She refused to pick up the machine and the doctor has reordered the CPAP for her. It was probably one little thing wrong with how the original order was done causing insurance to deny the claim. It is very important that we patients are looking out for things like this and making the doctors fix any errors.

Getting used to the CPAP mask

Getting used to the CPAP mask is very hard for me. It has been a couple of months and I still am not used to it. At night I move around a lot. Having a tube sticking out the front of my face doesn’t work well when rolling over constantly. A friend of mine suggested I move the tube to going directly above me and then over to the machine. That small change actually made a big difference. Since doing that I haven’t once pulled the mask out of the tube.

It isn’t just the tube that is the problem. At night I appear to want the mask off. I can tell this because in the morning I will have found that I have taken the mask off at some point. Usually one or both of the clips will be disconnected. Sometimes I will find the straps have been undone. The medical supply tech noted that sometimes people will take their masks off at night when they awaken. This appears to be what I am doing. I am not fully awake at the time, I don’t once remember taking the mask off. But I am apparently awake enough to understand how to take the mask off. Luckily this is happening less often. I would say that about half of the time now I awake with my mask still on. That is much better than before when I would awaken every time with my mask off.

Has the CPAP helped?

This is a tough question. Personally I do feel better rested when I sleep with the CPAP machine going. I don’t seem to be getting any more sleep than before. Actually if anything I appear to be sleeping for shorter amounts of time. But the sleep I am getting appears to be much better quality and I am feeling better rested.

Here is a recent fitbit report showing one typical week of sleep patterns for me.

A couple of things to note in this report. The times shown sleeping do not add up to the times shown on the right. That is because the times on right reflect how much of that time is actually spent asleep, and not restless or awake. You can also see that July 1 appears to be missing. That is because about once a week I’ll have a day where I simply can’t sleep at all.

That three and a half hour average is actually down almost an hour when compared to a few months ago. But a few months ago the sleep graphs showed almost all red; meaning I was constantly moving and in either a restless or awake state. Having the CPAP machine assist my sleeping has allowed me to actually get some rest. (I should note I planned on showing a graph of three months ago for comparison, but my fitbit app is having issues and I’m not able to get that graph right now).

Wrapping it up

So yes, I do believe the CPAP machine really is helping. Going through chemo and now maintenance has made my already bad sleep habits even worse. But at least the CPAP machine does seem to be helping to ensure what little sleep I am getting is of a better quality. Getting used to the mask has been a pain in the rear; but again the irritation of wearing a mask is nothing compared to benefits of getting better sleep.

Song of the day

Today’s song has nothing to do with this post. Later today my middle son and I are traveling to JazzFest in Sioux Falls. We are both psyched up for this. One of the acts we are looking forward to is MarchFourth. Here is the song Swiggity they performed at the Sioux Falls JazzFest two years ago.

Bonus Song

Last year I attended JazzFest in Sioux Falls. One my personal highlights from all of the great performances came from the Zero Ted Band. It was just great to see a Zappa song played on the stage!

The sleep studies

I wish I could sleep like a dog!

Sleep problems have plagued me for years. Since being on chemo sleep has become even more troublesome. I’ve spoken with many who have gone through chemo and it appears a lot of us have sleep problems. Sleep studies almost seem to go hand in hand with cancer treatment. In this post I will briefly share my experiences with two sleep studies.

The first sleep study

Back in January I noted that I would be going through a sleep study. I really was not looking forward to the sleep study. The sleep study would be performed at the hospital. Unsurprisingly I really was not looking forward to sleeping in the hospital with a bunch of wires hooked up all over my body.

When I got to the hospital to check in I was even more nervous due to the fact the sleep studies are performed in the oncology ward. Really??? I am finally done with chemo and I have to spend a whole night in an infusion room? It actually makes sense for the hospital to have these tests in the infusion rooms since they aren’t needed at night. But it was still somewhat annoying for me.

The bed I had to sleep on was actually pretty comfortable. Two of the infusion rooms have beds that fold down from the wall. These were not the normal uncomfortable hospital beds. It still seemed weird sleeping in an infusion room however.

It took the sleep tech what seemed like forever to put all the probes on my body. Probes seemed to be hooked up to every limb. Getting all the sticky stuff off later was a pain in the rear! After getting everything hooked up the tech said he would be coming into the room at various points during the night to make adjustments to the machine.

That night it took me forever to sleep. I actually thought I didn’t get any sleep at all. The fact I looked at my watch at least twice an hour led me to believe this. Plus anytime I tried to roll over it seemed wires got in my way. According to the sleep tech I did fall asleep but I was constantly waking up. In his opinion he guessed the doctor would find me a suitable candidate for using the CPAP.

At around 4 am I had enough and told the sleep tech I was not able to lay down anymore and that I was ready to go home. He unhooked all of the wires from me and also had me sign some paperwork stating it was my choice to leave early.

Waiting for the results of the first sleep study

It took weeks for me to get the results of the sleep study. I had been told it would likely be two to three weeks to get my results. Two months later, in March, I was finally called by the doctors office. A nurse stated I had to have a second sleep study. Now that I think about it, I never have seen the results. I have however been told that when sleeping I stop breathing way too many times per hour. During my next doctors appointment I will have to ask how many non-breathing events per hours I have. For some reason I really can’t remember how many times the nurse told me I stop breathing per hour.

A nurse from the pulmonary doctors office let me know a second sleep study would be needed. In this second sleep study a CPAP would be equipped with the recommended settings. She said due to my number of non-breathing events per hour it wasn’t really a question of whether I needed a CPAP, but rather a matter of what settings needed to be used.

The second sleep study

My second sleep study went much better. Maybe it helped that was I extra tired that day. Or maybe the fact this time the CPAP was hooked up with the recommended settings meant I could sleep better. Either way I slept for a whole five hours straight. Sleeping that long uninterrupted hadn’t happened for a very long time.

Really the only part of that night I didn’t like was getting used to breathing with the CPAP. CPAP stands for Continuous Positive Airway Pressure. This means air is continuously pushed through the airway, which theoretically will keep non-breathing events from happening. Getting used to this continuous air being forced down my throat took some time to get used to. Usually breathing in is harder than breathing out. With a CPAP on, the opposite it true.

Conculsion

That pretty much sums up my sleep study experiences. At the time I really hated going through the sleep studies. But in reality they weren’t all that bad. In the next post I will share my experience of getting the CPAP machine and trying to use the dang thing at home.

Song of the day

Up first is a song from the Canadian band Barenaked Ladies. This is a song for insomniacs to be sure. This line keeps going through my head: “

With all life has to offer,
There’s so much to be enjoyed
But the pleasures of insomnia
Are ones I can’t avoid

Bonus song

For the bonus song I go back to 80’s from the Danish hairband D.A.D. I actually wish I could sleep my day away…..