Earlier today, the IV injected me with my latest maintenance round of Rituximab. When speaking to my oncologist, she noted it was a year ago that I had my first round of maintenance. That means I am technically halfway through my maintenance experience. In this post, I will briefly summarize how my last year of maintenance has gone.
Recap of the previous year
For me, maintenance truly began when I decided whether to do maintenance infusions or not. Mostly I decided to do maintenance because my oncologist recommended I do so, and I am willing to do whatever it takes to extend my quality time with family.
The actual infusion of Rituximab during the first round of maintenance was a non-event. Getting the actual injection each round has also been a non-event. The Benadryl knocks me out, and I don’t even remember most of each infusion. Even today, the injection was a non-event; well, besides the nurse having to try a second time to get the IV in.
About a week and a half after my first maintenance infusion, I noted a lack of sleep, irritability, and chills as side-effects. Over the last year, I continue to have a lack of sleep and irritability for sure (my kids will attest to that). Luckily though, the chills have gone away. About half a year after my first maintenance infusion, the chills were replaced by “not feeling right” with almost flu-like symptoms. That is still happening to me following each round of maintenance. It seems to get better as time goes on and is almost completely gone about a week or two before I go back for another round.
Today’s infusion of Rituximab
Today was once again a non-event. There was one highlight. Since my wife is working at the tax office, she was not able to bring me to today’s infusion. Instead, I was fortunate to hang out with a friend who was generous to bring me. Well, at least for the parts I was able to stay awake.
I did speak with my oncology doctor, and she let me know my hemoglobin numbers are concerning. Later this week I will post about that. There are some changes I’m probably going to have to work harder on specific life changes. She also talked about my short term memory issues and said if they continue or become dangerous (such as when driving), we may look at other options.
There was one significant change today compared to other maintenance infusions. To get into town this morning, I had to drive through whiteout blizzard conditions. I did not want my friend to do that to bring me home. So instead of resting at home like I usually would, I am now at the office working. Well, not working since I am a little dizzy when moving around. But, I can write, and so I thought a blog post or two on my various blogs was in order. I am happy I don’t have brain fog as bad as while I was going through full chemo.
Happy to be halfway through
I am thrilled to be halfway through maintenance. While I have had some side-effects, I don’t see any of them as being deal-breakers. Short-term memory loss is concerning. But that seems to ebb and flow alongside maintenance infusions. And I don’t mind the “wrong” feeling that occurs after each maintenance cycle. I will put up with these mild side-effects if it means more time with my wife and kids! But I will say I am also delighted that I am now on the downhill side of maintenance infusions.
Song of the day: One Year of Love
I’ve been in a real Queen mood lately. When writing a post about being on maintenance for one year, this classic Queen song came to mind. And actually, it is the love for my wife and kids that is making me want to do maintenance.
Bonus Song: Me & Paul
Today’s bonus song has nothing to with today’s post.
Earlier this week Paul English died. He was the legendary drummer for Willie Nelson and quite an interesting character. The track Me & Paul by Willie Nelson chronicles some of the adventures the two artists had together. RIP Paul English.
Actually as I contemplate the lyrics of this classic song I think maybe the song is related to today’s post:
It’s been rough and rocky travelingWillie Nelson, Me & Paul
But I’m finally standing upright on the ground
After taking several readings
I’m surprised to find my mind’s still fairly sound