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.

Living in quarantine with someone presumed to have COVID-19

Well, it finally happened. Somoene in my household has caught the coronavirus. Well, no that isn’t true. Someoe in my household is “presumed” to have caught the coronavirus (more on that later). Due to that my household is on a two week quarantine. Since I am an individual with a possibly weakened immune system, I thought I would do a post about how I am coping with this situation.

First, let’s talk about this “presumed” case

This all began almost a week ago when my wife started to get symptoms of the coronavirus. I believe it was last Friday (today is Wednesday). Specifically, she was running a fever and was having problems breathing. Since she has a heart condition and lives with someone that has a weakened immune system, she called her doctor’s office. After going back and forth on the phone, the nurse told my wife she was not going to bring her in for testing. Instead, she should keep her appointment, which was already scheduled for Monday. That appointment was for her heart medication, and the doctor would diagnose her then. But if her symptoms got worse, my wife was told to go to the ER.

On Monday, my wife went to the clinic. She was given a mask to wear and had to carry a piece of paper around. The appointment went mostly as usual for her. Since she was there for her heart condition, the doctor once again adjusted her meds to help keep her vitals in control. During that appointment, the doctor also said he is unable to test for the coronavirus because she can’t say she has come in contact with someone tested positive and has not traveled recently. Therefore she is a “presumed” case. He ordered her to do a two-week self-quarantine.

I’m pissed off

The actual quarantine part isn’t going bad. All of us have gone into our routines and mostly keep away from each other. The only bad part of this quarantine is the fact I am pissed off at the clinic. I don’t understand how my wife, who is high-risk due to her heart condition, is not someone who would be tested for COVID-19. To make matters worse, she lives with someone that has a weakened immune system (that’s me) and another person with an unknown muscle disorder (youngest song).

I certainly can understand not testing everyone. There are only so many resources available to the hospital system. It’s not just the tests themselves. But each test taken requires a lab technician to process those results. I would imagine if everyone gets tested, the whole system will become overwhelmed very quickly. So yes, I can understand not testing someone with symptoms if they are otherwise healthy. Those people don’t have other underlying issues that could be a considerable complication dealing with the coronavirus. But I do not understand refraining from testing high-risk individuals.

To make matters worse, we have the Governor’s office in South Dakota touting how few confirmed cases we have. Well, no shit! If you don’t test anyone, then you won’t have failed tests! According to the SD COVID-19 website, as of right now, there are no cases of the coronavirus in my county (Edmunds) and only three cases in the county where our office and the hospital is (Brown). These numbers are absolutely worthless if they don’t include “presumed” cases.

Quarantined within a quarantine

Since my wife is quarantined as a presumed case of COVID-19, we are keeping away from each other. For the most part, I spend the day downstairs at my desk. The wife spends her day working upstairs on her laptop. Unfortunately, we do not see each other as often as I would like. I love my wife and wish I could be around her more while she is going through fevers and breathing issues. But, I’m doing the smart thing and staying away from her. We really don’t need both of us to get this damn virus. All I can do is be on standby in case she needs to be brought to the ER.

I’ll just keep on keeping on

For the two-week quarantine, I will just keep doing what I’m doing. Working remotely for the tax office, I still have a lot of work coming at me. My wife’s symptoms, while annoying her, don’t seem to be getting any worse. All I can do now is continue on with life and deal with things as they come up. The only break in my daily routine is when I remember my wife is a “presumed” case, and I get pissed off again for a few minutes…

Song of the day: Keep on Keeping On

Today’s song comes from Curtis Mayfield, and I felt it was appropriate for this post. Even though I have moments of being pissed off at the word “presumed,” I really am trying to stay positive and look forward instead of back.

Bonus Song: Allman Brothers Band

I can’t play a song about keeping on keeping on without playing a song from one of the greatest southern rock bands of all time!

I’m not living in fear of the coronavirus, but I am taking a few precautions

You can’t go anywhere without reading or hearing about the coronavirus. While the coronavirus is something to be wary of, I have decided not to live in fear of the virus. That being said, I have been taking a few extra precautions, just in case. In this post, I will briefly discuss why I don’t fear the coronavirus and what changes I have made.

Before going on, I will say this is just my perspective and what I am doing. I am not judging anyone who acts differently or saying anyone else should feel and act as I am. Each person has their own circumstances and experiences.

Why I don’t fear the coronavirus

I covered this topic in a post two weeks ago. Here is what I said at that time:

I live in a rural portion of a rural state. There isn’t a lot of people that live in Mina, SD. Yes, I work in Aberdeen, which is a much bigger city. But Aberdeen itself is pretty much in the middle of nowhere. Is it possible for something like the Coronavirus to make its way here? Yes, it is possible. But right now, I would instead prefer to focus on living life. I will deal with anything like the Coronavirus when and if it makes its way here.

Yes, my immune system does dive every eight weeks after getting my Rituximab infusion. But it doesn’t go down near as much as when I was getting full-blown chemotherapy infusions. Actually, I’m more nervous about my memory issues than I am about a compromised immune system.

I think the above paragraphs include why I’m not living in fear pretty well. The idea of living in fear doesn’t seem like living to me.

Another reason I’m possibly not living in fear was brought up by a friend after I wrote the post referenced above. I’m an Army veteran. At age 18, I had to prepare a will get into the mind-frame that I would die. That mind frame was reenforced through a deployment to Bosnia and missions to other countries. Actually, I’m more worried about PTSD eventually impacting me than I am about a virus.

What the CDC has to say

I’ve heard many people reference the Center for Disease Control and Prevention (CDC). Oddly though, after speaking with many people who talk about the CDC recommendations, I found that few have read what the CDC has to say. The CDC is only recommending actions for those who are “higher risk.” Here is who the CDC says is at higher risk:

  • Older adults
  • People who have serious chronic medical conditions like:
    • Heart disease
    • Diabetes
    • Lung disease

Well, I have follicular lymphoma, so I have a severe chronic medical condition. The site does have recommended actions for people who are at high risk. While I’m not going to barricade myself in my house, there are some precautions I am taking.

The precautions I am taking

Even though I’m not living in fear, I am still taking a few precautions. Mostly I am avoiding crowds of people. There are a concert and a movie I wanted to attend later this month. I have canceled my plans for both of these events. Just because I’m not living in fear, it doesn’t mean I want to take unwarranted risks in public. I have my next maintenance infusion in a couple of weeks, and I plan to be healthy when it is time to get that poison in my veins once again.

Another precaution I had taken was to cancel a plan to attend a parade in Sioux Falls. The charity cosplay group I am a part of planned to march in the St Patty’s Day parade. Initially, I had declined to join the event due to being busy at work. When I realized my schedule would allow it, I had possibly planned on attending the event. But then this whole coronavirus thing happened, and I realized going to the parade would probably not be smart for people with compromised immune systems such as me. In the end, it doesn’t matter because the parade organizers canceled the event anyhow.

Basically just avoiding large crowds

I guess all of my “precautions” could be summed up as “I’m avoiding large crowds.” Maybe if the virus spreads to a higher degree than it has, I may take more precautions. Even if that happens, I won’t live my life in fear. I’ll take extra precautions and keep living life how I want to live it. If I do take additional precautions, that will likely involve spending more time with the wife and kids, so that might not be so bad.

Song of the day: Don’t Stop Believing

Why not go back to Journey for some inspirational music. I think that is the prescription for all the negativity going on in social media right now.

Bonus Song: Hysteria

Ever since this coronavirus thing hit the media, I’ve had the song hysteria stuck in my head. Different people react in different ways to virus outbreaks. The only thing I wish would change is the media. I believe certain media outlets have exaggerated the virus outbreak for ratings.. This also happens to be a good love song from Def Leppard.