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.