Eight weeks ago, I allowed a film crew from the Sanford Health marketing department to follow me around for an evening. They then also sat with me for the first part of my maintenance treatment the following morning. This interview is part of Sanford’s “We’re In This Together” series of videos and stories of people like me going through cancer treatments through Sanford.
I have to admit it is peculiar seeing me on video. I’ve always preferred to be behind the camera and not in front of it. But I figure if sharing my story in any way helps someone else, well, then its worth getting out of my comfort zone.
Here is a link to the Facbook post from Sanford Health about my story:
I’m not going to post anymore on this topic today. It’s time for me to get ready for the latest maintenance infusion of Rituximab. I think this infusion will be about the half-way mark for me.
Song of the Day: Kodachrome
Even though this isn’t my regular blog post, I’m still going to do a song of the day. I’ve always loved this Paul Simon song. Since I had to keep posing in front of a camera for the marketing team, I couldn’t help but have this song come to mind.
Bonus Song: A Day In The Life
Somehow I feel my cancer story would have made an interesting addition to this Beatles classic. “I read a blog today, Oh Boy…..”
As a cancer survivor, I consistently have people asking me about my current status. I don’t mind when people do so, and I generally let people know that I am in remission. What does get old, though, is some of the responses I get from people who misunderstand what I mean by remission. In this post, I will briefly touch on what remission means to me and what I have found it says to others. A fellow cancer survivor asked me to do this post so she could share it with her family.
The definition of remission
Before going on, I would share this definition of remission from the National Cancer Institute:
remission A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.
As I read the definition of remission, I can’t help but notice that the word cure is missing. I have always thought remission meant that cancer had been kept at bay for a short period of time. I never really thought remission meant anything other than that. But I’ve come to find out that others do.
Remission is thought of as a cure by some people
There are times when I tell people I am in remission they will say something like “oh, so you’re cured now” or “that’s great you were able to get rid of your cancer!” At first, I didn’t think much of it. But after this happened enough times, it started to become noticeable. I don’t know if it is because a lot of people have a different understanding of what remission is. Or maybe this occurs because people are hopeful that the remission is complete and there isn’t any cancer left in my body.
No matter what the reason, it just seems odd to me for people to act as if I have been cured after I say I’m in remission. Whenever someone acts like I’m cured, I can’t help but think of the maintenance infusions I go through every eight weeks. Plus, there are the scans I will likely have for the rest of my life to check the current status of my lymphoma. Even if my lymphoma never comes back as active cancer (which it likely will do), I will be treated by doctors as if I have a chronic condition for the rest of my life.
Learning to accept lymphoma as a chronic condition
I still don’t like it, but I’m learning to accept lymphoma as a chronic condition. Maybe that is why I get slightly irritated when other people seem to think I am cured. Perhaps people saying something about my being cured makes me remember that I am not cured and may have to go through full-blown chemotherapy again, or possibly something even harder on the body. I try not to think about what will happen when I fall out of remission. Yet, I find it hard to avoid the topic in my mind when reminded that there is currently no real cure for lymphoma.
Going forward I plan to stay positive about remission
Even though I get annoyed internally when people act as if remission is a cure, I try never to show my irritation. I hope to stay positive about being in remission. When people ask for more details, I let them know what lymphoma is and what my being on remission means. The person I am speaking with may someday have cancer or become a caregiver for a cancer patient, and I hope to pass on a positive attitude to them. Plus, helping to educate them may make their experience less of a shock when they have a personal encounter with cancer.
Today’s song: Don’t come around here no more!
Tom Petty and the Heartbreakers created the perfect remission song. In my head, I like to tell my lymphoma to stay away, and this song sums it up perfectly. This live version of the song shows how great of a group the Heartbreakers were. I feel sad I’ll never get to see them live again.
Bonus Song: Stand Back
This song obviously has nothing to do with cancer. But aside from the apparent “Stand Back” reference to being in remission, I can’t help but think of this line in the song: “No one knows how I feel, What I said unless you read between my lines.” That almost sums up trying to explain remission to people.
Bonus Bonus Song
OK, I know I usually only have two songs of the day. But, I can’t have both Tom Petty and Stevie Nicks on a list without posting the song they did together. That would drive me crazy if I didn’t include this song.
I just wanted to drop a quick note to let all my readers know there is a reason I haven’t been posting a lot lately. In the last few weeks, I have been working with another organization on two very cool projects. The first project is a book I hope to have completed and published next year. This book will detail what my family and I went through going through cancer diagnosis and chemotherapy.
The second item keeping me very busy has been working on the podcasts. Yes, I said podcasts (as in plural). I’ve already mentioned I will be doing a cancer podcast. This project has moved ahead, and at the beginning of 2020, I will be doing a DadAgainstCancer podcast alongside this blog. The podcast will focus mostly on how cancer and cancer treatments impact family members.
Alongside the DadAgainstCancer podcast will be a second podcast dealing with veterans. This podcast will be similar to the DadAgainstCancer podcast. But it will focus on family members of veterans who are struggling. The as-yet named second podcast will deal with more than just cancer. Guests on this podcast will focus on what family members of veterans with PTSD, cancer, homelessness, or any other struggle, are doing to help their loved one.
I want to thank everyone for their continued readership and hope these new podcasts will be of use to some people out there. Also, in the future, the podcasts and this blog will have small advertisements. I’m hoping to do the advertising in a way that doesn’t become intrusive. Please bear with me as I implement all the upcoming changes.
PS. One other thing keeping me busy has been working on another book unrelated to cancer. This book is project management related, and I think it is kind of finished. I’ll know for sure after the editors are done tearing it apart.
Song of the Day: Video killed the radio star
Launching a podcast brings this classic Buggles song to mind. It happened to be the first music video played on MTV after the moon man landed. I decided against posting the original video. Instead here is a live performance from 2004:
Bonus Song: Radio Ga Ga
Since we are on the subject of radio. This track from Queen is just timeless. I wish I could have been at Wembley Stadium for Live Aid back in 95. I do remember watching it on TV though (probably on MTV, I can’t remember for sure)! Every wonder where Lady Gaga got her name….
My family over the last couple of years has noticed my memory has gotten pretty bad. It’s not usual for people to forget some conversations, because they are thinking about something else while listening to the other person. But this goes way beyond that. It got to a point where my kids don’t like to tell me about anything they need to do, because they know later on I likely won’t remember it and get annoyed at them for not telling them. That is another major way my family has been impacted by cancer. My kids in particular never know what I will remember and assume I will never remember anything anymore.
Over the last year I have found it necessary to take notes in my phone about any conversation I believe is important (of course I often forget to do that…). Throughout the day I will look at my notes and will have forgotten a lot of what I have written down. Before I started taking these notes I started thinking the whole memory loss thing wasn’t real. There doesn’t seem to be any pattern as to what I forget or what I remember.
Avoiding talking with others
I’m not talking about situation where something seems forgotten and then someone says something that brings forth a memory and you say “oh yeah, I forgot that”. No, these memories seem completely gone. There are times I do say “oh yeah”, but I only do that to try covering up the fact I really had no clue what happened. It is getting quite frustrating and I sometimes find myself getting quite grumpy with people because of it.
Actually, lately I have tried avoiding any social situations where there are a lot of people around. The more people there are around me, the more likely it seems that I will forget important details that have happened in the recent past. About a week ago I found myself snapping at my oldest son because his puppy was being a puppy. I love my son and his dog. I love being around them. Yet I snapped at them for no real reason, other than I believe my memory issues were overwhelming me.
My dog has learned to take advantage of my memory problems
My memory problems isn’t all bad for everyone. Lucy, the Yorkie in our family, has learned to take advantage my memory issues in an attempt to get extra treats. Usually after getting a treat for peeing Lucy would go off and be pitiful somewhere. But now she just stays there acting as if she never got a treat. This sudden change in her behavior had me wondering about why she suddenly expects a second treat. Plus, she wasn’t always waiting for a second treat, only about half the time. This had me wondering if my short-term memory issues were causing issues with me remembering giving her a treat.
To test whether Lucy was abusing my memory issues I setup my webcam on the computer where I normally give her the treats. I recorded myself working at the computer for a whole day. At then end of the day I looked through the footage to see if there were times I would give her a second treat. Sure enough, almost half of the time I would give Lucy a second treat. When I gave her this second treat I would even say the things that I would normally say. I did not once recall giving her two treats for the same trip outside that day; yet the camera shows I did.
I now have a system in place to prevent myself from doing this. Getting that many treats would be bad for Lucy long-term. This whole situation does show how smart dogs can be though…
Hopefully my memory issues improve
As I close this post all I can do is hope that my memory problems improve. I’ve spoken with other cancer patients who had brain fog similar to what I experience; and their memories improved after a couple of years. Of course, I’ve also spoken with a couple of patients who feel their fog never got better and with yet other patients who never experienced brain fog. For the sanity of my family I hope to be one of those who is able to navigate out of the brain fog.
PS. Good news. I think we are closer to the launch of the podcast!!! Yeah!!!
If I ever completely mentally lose it, I have a feeling it will be due to these memory issues. In this track Freddy Mercury and Queen explain how I feel at times. (and no, I’m not actually going mad yet).
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.
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..
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…
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.
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.
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.
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.
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.
The bonus song is how I feel about my soulmate Mindy.
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
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.
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.
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
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.
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.
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…