My maintenance infusion was cancelled

No pokes for a while!

Since finishing chemo in December of 2018, I have had maintenance infusions of Rituximab every eight weeks. Next Wednesday, I was scheduled to have my next round of maintenance. However, with all of this coronavirus stuff going on, I wondered if maintenance infusions were even considered important enough that the hospital would keep doing these infusions. Also, my wife is presumed to have COVID-19, and my household is under quarantine for two weeks. In this post, I will briefly discuss whether maintenance is essential and what my oncologist had to say about my maintenance infusions going forward. 

Is maintenance essential?

I belong to a few online support groups for lymphoma patients. It seems that different oncologists have different opinions about whether maintenance is essential when a global pandemic is going on. The clinic I go to appears to treat this as an essential procedure. I got my notification from the clinic confirming the appointment yesterday. I did contact my oncologist after getting that notification, but honestly, I forgot to ask her whether maintenance infusions were considered essential. Most of my time speaking with her was about other issues (expanded upon in the next section).

If you or someone you are caring for is going through maintenance, I would suggest calling the oncology team and finding out if they are still doing maintenance. I’ve spoken with many who live in communities with the rapid spread of the coronavirus. In those cases, maintenance infusions have generally been postponed. I think the term “essential” for medical conditions can change rapidly depending on the current coronavirus spread in an area.

The conversation with my oncologist

In yesterday’s post, I noted my wife is presumed to have COVID-19. Most of my phone conversation with the oncologist revolved around me quarantining myself away from my wife. She recommended I avoid her as much as possible and wash my hands regularly. Additionally, she wants me to wear a mask when I am around my wife. Basically, she wants me to be under quarantine away from my quarantined wife (my words, not hers). It is almost like I’m going through chemo again. 

During the conversion, my oncologist noted that my immune system is compromised. It could be horrible for me to get the coronavirus. I’ve seen many lymphoma patients going through maintenance wondering if they have to be concerned. After speaking with my oncologist, I get the impression that we should be very concerned! Our immune system is not going to work as good as a healthy person’s immune system.

One other topic during the conversation with my oncologist was my memory issues. I affirmed that once again, I seemed to have memory issues. They seemed to begin about five days after receiving the Rituximab infusion and lasted for at least two weeks. Actually, now that I think about it, the memory issues lasted longer than two weeks. But they seemed to start getting a little better after two weeks. I’ll have to remember to tell the oncologist that. 

The reason my maintenance was canceled

Since my wife and our whole household are under quarantine for two weeks, I knew next week’s appointment would not happen. What I didn’t know is if the oncologist would want to do it the week after, or cancel it altogether. What she decided to do was cancel the current appointment and follow up with me in a month. At that time, she will get an update on my status and my wife’s condition. If there continues to be community spread in Brown county, she might push any further maintenance even further into the future. Even so, due to my memory issues, I may be utilizing a different drug than Rituximab for ongoing maintenance.

I get at least a month off maintenance

Part of me is happy I get to another month without a maintenance infusion. Maybe I’ll start to feel better overall. But another part of me is quite unhappy about missing this maintenance infusion. I can’t help but wonder if changing my maintenance schedule will give the lymphoma cancer cells a chance to reorganize and start spreading rapidly again. I know my wife is terrified about me missing a maintenance infusion. All I can do is hope this time off maintenance doesn’t have any long-term repercussions.

Song of the day: I Want To Break Free

I have kind of a love/hate relationship with my Rituximab infusions. On the one hand, I love that the injections may keep cancer at bay for longer. But on the other hand, I hope to feel closer to normal now that I won’t be doing maintenance for at least another month. So I thought this great Queen song was in order:

Bonus Song: Red Barchetta

Since my song of the day had to do with breaking free, I thought I would share a classic song from Rush that epitomizes freedom for me. To me, Red Barchetta is not about a car, but rather about the feeling (no matter how temporary) of pure freedom. Below is a brilliant live version of the song.

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