Neurology appointment over the internet went well

Earlier this week, I had my scheduled neurology appointment. This appointment was a follow-up to the one I had months ago for my memory issues. The only difference this time is that I had to utilize a tele-med meeting over the internet. In this brief post, I will share my tele-med experience. Additionally, I will briefly talk about what the neurologist said about my memory issues.

Tele-med is the way to do these appointments.

As I mentioned last week, the neurologist nurse called to ask if I would be OK with participating in a tele-med appointment over the internet. I thought it was a great idea. Not only would it save me the three-hour drive to Sioux Falls, but it would keep me away from a COVID-19 hotspot. And being someone who is used to working from home, it only makes sense I would do doctors appointments this way as well. 

The actual appointment went very quickly. Well, it went quickly after the doctor got on the video feed. Just like at the clinic, I had to be in a “waiting room.” Even sitting in the comfort of my own home that seemed to take forever. But it was still better than waiting at the clinic!

I was able to hear the doctor clearly throughout the meeting. He did have problems hearing me at times. Next time I do this, I might tell my kids to get off the internet for the duration of the appointment. Something they were doing may have caused bandwidth issues going upstream. But overall I was pretty pleased with the quality of the tele-med meeting.

The neurologist recommended I change maintenance drugs.

The actual appointment went very quickly. I would say it lasted no longer than ten minutes. This appointment was a follow-up to my memory issues. I explained to the neurologist how the last few rounds of rituximab maintenance went. I told him that my memory problems seem to get really bad about five days after my injection. They stay bad for a few weeks and then slowly get better. Then, just as I feel somewhat normal, I get another round of maintenance. 

Memory issues are not a listed side-effect for rituximab. Due to that, I actually wondered if this whole memory issue hasn’t been in my head (well, obviously it’s in my head, you know what I mean). The neurologist said there are times where certain medicines can cause unique side-effects for individual patients. He believes that is happening with me and seems quite concerned about it. I have to admit to feeling relief that he believes me. Before being diagnosed with cancer, I went through a few doctors that wouldn’t believe anything was really wrong with me. That left me with a bad impression of doctors.

His more significant concern was any long-term damage that could come from the continued use of rituximab. I hadn’t even considered that. The neurologist planned to recommend my oncologist switch to an alternative maintenance drug. Part of me is nervous about trying another medication. But a more significant part of me now fears any continued use of rituximab will permanently damage my brain.

Maintenance is coming up.

My next round of maintenance is coming up in about a week and a half. At that time, I’ll speak with my oncologist and see what she recommends I do. Maybe before then, she will call me and discuss my options. Or perhaps even utilize a tele-med appointment. That seemed to work well with the neurologist. No matter what, though, I have to admit I don’t think I want to retake rituximab unless it is necessary. Losing my mind is one of my biggest fears.

Song of the day: Sirius/Eye in the Sky

Talking about neurology and video conference with a doctor brought this classic Alan Parson Project song (well songs) to mind.

Bonus Song: Amnesia

Some years ago, the group Chumbawamba had their one-hit-wonder with Tubthumping. The band actually has music that I think is much better than that song. This song from Chumbawamba comes to mind when I think of memory loss.

Maintenance infusion delayed one month and neurology appointment will be over the internet

The last time I blogged was almost two weeks ago. This delay has mostly been due to being busy with work. I work in a tax preparation office and have been busy blogging for that, though. At that time, I mentioned my maintenance infusion of Rituximab as canceled due to my wife being a presumed case of COVID-19. I now have a new appointment set up for my maintenance infusion next month. Also, the neurology appointment I have scheduled for next week is now going to occur remotely. 

First, an update on my wife

Before talking about my upcoming appointments, I would like to let everyone know my wife seems to have recovered. Her fever broke about a week ago. Her breathing is still strained, but not near as bad as it was. The current breathing issues could very well be more related to spring allergies than COVID. That is one less stress with her having recovered!

Maintenance scheduled for the first week of May

Barring any health issues, I now have my next maintenance scheduled on month after it initially should have taken place. As I noted previously, my oncologist is concerned about my memory issues. She may change me over to a different medication. I will see what happens when I have my actual appointment. As of right now, the appointment is scheduled. The hospital has not stopped Rituximab infusions due to the coronavirus outbreak.

Neurology appointment next week.

I have a follow-up appointment scheduled with my neurologist next week to discuss my memory issues. Since Sioux Falls has become a hotspot for COVID-19, I was wondering if this appointment would still happen. Well, earlier this week, a staff member from the neurology clinic called and asked if I would be OK making a telemed appointment. I let her know I was more than happy to utilize a remote meeting. Sioux Falls is a three-hour drive from my house. It only makes sense to participate in the appointment remotely, especially with this whole coronavirus thing going on.

More posts to come next week

I’m looking forward to seeing how a telemed appointment works out. I’ll do a post about how the whole telemed experience went. There will also be another post about the results from the neurologist. Finally, this upcoming week I will have a post up about going times I have to go out in public during the coronavirus outbreak.

Song of the Day: Too Much Time On My Hands

Luckily, I have been busy working remotely for the tax office. That has kept me pretty busy. But, even with the tax deadline being extended, I now have a lot less work to keep me busy. I have a feeling this Styx song will be going through my head while I’m isolating at home with my family.

Bonus Song: Fooling Yourself (The Angry Young Man)

I thought I would stick with Styx for another song. If you haven’t noticed, I am very into music. This particular song was my personal theme-song when I decided to quite a job some decades ago and changed the direction of my career. That was a great move, and I have no regrets.

Actually, this isn’t all of Styx. This video has Tommy Shaw (of Styx) singing this song with a youth orchestra. I love the things that can be found on YouTube!

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.

Helping my wife through this cancer thing

Hanging out with my wife

Cancer sucks. It not only affects the person who has cancer, but also many family members and friends. In my case, my wife has taken on the role of my primary caregiver. Being a caregiver for a loved one is hard! In this post, I’ll briefly discuss how I am trying to help her help me.

I’ll help you through this

Back when I received my cancer diagnosis, I remember visiting with my wife on our deck. I could tell she didn’t know whether to be angry, to cry, or scream. I remember telling her, “don’t worry, I’ll help you through this.” She just stared at me and said: “but I’m supposed to be helping you!”. That is a moment I will never forget.

Looking back, I think we were both right. In so many ways, my wife has been the perfect caregiver, especially when I go through treatments. She spent hours sanitizing our house when I had to go through chemo. My wife continually goes out of her way to keep sick people away from me. At every medical appointment, my wife is there. Of the very few appointments my wife hasn’t made, she sets up someone to be with me and worries the whole time. It appears to me that my wife spends more time worrying about my health than anything else. 

I’ve tried many ways to care for my wife while she is taking care of me. The only thing that seems to work is to spend time with her. When I think about it, I reassure her I am not going anywhere anytime soon. I try to let my wife know just how much I appreciate everything she is doing for me. That even includes the times she nags me to be careful when going into a public event, such as a concert. I keep trying to assure her I will be there for her.

Assuring her I’m here is the key

Part of me wishes I could do more for my wife. And yes, I do try to do more for her. But in the end, all she seems to want is an assurance that I am not going anywhere. If anyone out there is in a similar situation, I would let your caregiver know just how much you appreciate what they are doing. If that caregiver is a spouse or family member, I would recommend assuring them you plan to stick around for quite a while. Fighting this cancer shit can suck at times, but with the help of a great caregiver (especially a wonderful wife), the battle doesn’t have to suck quite as much.

Song of the day: Stand By Me

I think this classic song performed by Ben E King says it all.

Bonus Song: Lean On Me

Another song that I think says it all. A few good remakes have been recorded of this song, but I’m sharing the original from Bill Withers. It’s just such a great song with an important message.

My wife fears more for my health

3d illustration of a virus – medical concept

The big news in the world right now is the Coronavirus outbreak. You can’t turn on the news or look on social media without hearing about it. Lately, I’ve had conversations with people asking if I feared the Coronavirus because I am currently going through maintenance infusions every eight weeks. No, I’m not afraid of the virus. But I do believe my wife is.

Why I’m not afraid of things like the Coronavirus

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.

My wife does worry about viruses

Now my wife has a different feeling about germs. She has become very protective of my health and makes sure anyone with a contagious illness stays away from me. When this whole cancer thing started, she thought I was going to die (to be fair, I thought the same thing). I have a feeling she believes that if I were to catch a virus or disease, it would put my life in danger.

I think sometimes cancer caregivers, such as my wife, actually go through a lot more stress about health than those of us with cancer. My wife was the one to make sure I had masks and hand sanitizer while I went through chemo. She is also the one that made sure anyone that was sick stayed away from me. Even now, if someone is sick at the office, she reminds them my immune system is not what it should be. I know she has taken care of a lot of little details behind the scenes to keep sick people away from me. Its almost like she has made it her mission to keep from getting sick ever again.

Last year there were some cases of whooping cough going through the area. I remember my wife making sure anyone with a cough stayed away from me. Actually, my youngest boys had a cough at the time, and they stayed away from me until they tested negative for whooping cough.

Having said all that, I do appreciate her looking out for me. Having a caregiver when going through cancer helps with the whole experience. And having a caregiver with so much love makes it even better to make it as a cancer survivor.

Life is too short to worry

As I wrap up this post, I can’t help but think of the old saying that life is too short to worry about what can’t be controlled. I think that sums up what I think of things like the Coronavirus. Yes, if it does come to my area, I probably will take precautions. But for now, I’ll live life as I want and make sure my wonderful wife knows she is appreciated.

Song of the day: What a Wonderful World

It seems to me people spend too much time worrying about what is wrong with the world. War, pandemics, politics. If more people focused on how great this world is how to make it better then… well I’ll let the great Satchmo explain it:

Bonus Song: Always Look On the Bright Side of Life

Since I’m on a positive song kick, I thought this classic track from Monty Python was in order.

Rising hemoglobin levels

Last week I had I met with my oncologist during my regularly scheduled maintenance infusion. During this appointment, my oncologist noted that my hemoglobin levels were continuing to rise. In this post, I will briefly blog about hemoglobin, what my oncologist said, and what I may have to change. 

What is hemoglobin

I have to admit that I had no idea what hemoglobin was to be precise, I just knew it had to do with blood. Over the last half-year or so, my oncologist has mentioned my hemoglobin levels. But there were always more significant issues to talk about, so I never really put much thought into what she said. She also took the time to explain why hemoglobin is so essential.

Since I can’t remember exactly how my oncologist explained hemoglobin to me, I will share this definition from MedicineNet:

Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body’s tissues and returns carbon dioxide from the tissues back to the lungs.

MedicineNet

What the oncologist said about my hemoglobin levels

First, my oncologist noted that my current hemoglobin levels are still within the acceptable range. It just that they have slowly but steadily increased. Right now, my hemoglobin levels are right at the top of the acceptable range. If things continue like they are, it is likely my hemoglobin levels will be out of range in a future appointment.

Increased hemoglobin means my body is trying to get more oxygen throughout my body. In my case, the oncologist believes two possible underlying conditions may be causing my body to need more oxygen. These conditions are sleep apnea and being a smoker.

First, I have sleep apnea and possibly am not wearing my CPAP mask as much as I should. I probably wear my CPAP mask about half the time when sleeping. It has been very hard getting used to wearing a mask at night. Of the times I do wear a mask, I am usually only keeping my mask on for part of the night. Sometime during the night, I will usually remove the mask while sleeping. 

Looking forward, I am going to try wearing the mask more consistently. I get better quality sleep when wearing the mask. It is just so annoying to try keeping it on.

The second factor noted by the doctor is the fact I am a smoker. She wants me to focus on stopping smoking now. Smoking is an issue I plan to blog about soon (by request of many fellow cancer survivors). In this post, I will say that I will be trying to quit again. But this is a very complicated issue that many cancer patients wish to avoid speaking about with others. It does, however, make sense that smoking would cause the body to want more oxygen.

What I plan going forward

Going forward, I plan to tackle both areas the oncologist pointed out to me. First, I plan to ensure that I am always going to bed with my CPAP on. Even if I travel, I will bring the machine with me and use it. Second, I once again plan to quit smoking. I know I should want to. But a big part of me does not want to stop, and I’ll wait for a future post to discuss that. Hopefully, by making these changes, or at least attempting to do better, my hemoglobin levels will stop rising.

Song of the day: Let It Bleed

Talking about blood brought this classic Rolling Stones song to mind. It’s actually a really good song for anyone going through cancer because having a good support structure is important. The opening verse explains it all:

Well, we all need someone we can lean on
And if you want it, you can lean on me
Yeah, we all need someone we can lean on
And if you want it, you can lean on me

Rolling Stones, Let It Bleed

This is a great live version of the song from 1998.

Bonus Song: Give Blood

Lyrically, Give Blood is not one of Pete Townshend’s (The Who) greatest songs. But this song features David Gilmour (Pink Floyd) on guitar and musically is one of my favorite Townshend songs. The fact it happens to be named Give Blood is enough reason for me to use it with this post.

One year of maintenance complete

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 traveling
But I’m finally standing upright on the ground
After taking several readings
I’m surprised to find my mind’s still fairly sound

Willie Nelson, Me & Paul

Once again sharing the Cancer Signs and Symptoms Infographic on #WorldCancerDay

February 4th is World Cancer Day. I had planned on doing a big post about World Cancer Day and what people can do to help others with cancer. But after looking at my site statistics, I see that last year’s World Cancer Day post I wrote was viewed and shared by a lot of people. In that post, I shared an infographic with some signs and symptoms people should be on the lookout for to possibly detect cancer. This year I will once again share that graphic. I know I had many symptoms, yet I refused to go to the doctor. Had I gone to a doctor sooner, I might have had more treatment options. Hopefully, seeing this infographic may help someone get to the doctor and detect any cancer before it is too late.