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.