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..
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…