Getting an MRI for memory loss

Yesterday I was supposed to have my latest maintenance infusion of Rituxan (Rituximab). That did not happen after consulting with the oncology CNP and oncologist. My memory issues have not improved, and they decided to schedule an MRI for me instead. In this post, I will briefly discuss my memory loss and upcoming MRI.

Memory loss is not improving.

I’ve noticed memory loss issues for quite a while now. Over a year ago, I mentioned it in my post about brain fog (chemo brain). Since that time, my short-term memory problems have not improved. I think they have become worse. It has gotten to the point where my kids don’t even like to tell me about anything coming up because they figure I will forget it anyhow. 

My memory loss has also become one of the reasons I try to avoid too many people. It gets frustrating trying to talk to people with the knowledge that I might be forgetting conversations from earlier. I’ve turned in to the person that repeats the same story over and over again. Even worse, I’ve become the person that can’t be trusted to remember anything. It gets quite frustrating.

Nothing seems to work for improving memory loss.

I’ve noted before that playing logic games helps out with the thinking portion of brain fog. Sometimes the fog is so thick I can’t write a single blog post. But after playing logic and brain games for a little while, the mist will open up enough for me to think straight. As far as I can tell, playing games does not help with my memory loss. I’ve also tried memory and other brain games. Nothing seems to work. 

Of course, part of the problem is I don’t know just how often I am suffering from memory loss. There are times where friends or family members will bring it to my attention. And of course, there are times I am sitting somewhere trying to remember what I was going to do. But I can’t help but wonder how often I am experiencing short-term memory loss and don’t realize. How am I supposed to know I forgot something if I don’t remember there was something to forget?

I am getting an MRI of the brain.

When I had my consult with the oncology CNP yesterday, I brought this up. My wife was there back up what I was telling the CNP. I think my wife is even more worried about my memory issues than I am. It can’t be easy for her to be married to someone going through memory issues.

The CNP and oncologist met about my memory loss and decided against having me take my Rituxan infusion. Instead, I would be scheduled for an MRI of the brain. They want to try to narrow down what is causing the memory loss. This short-term memory loss could still be part of my brain fog from going through chemo last year. It could also be a side-effect of the Rituximab.

There are other possibilities unrelated to chemo that could be causing my memory loss. It is possible cancer has spread into my brain and is causing issues. I doubt this is the issue, but it is a possibility. There are also possibilities I can’t think of, which an MRI may be able to spot. I believe the main reason I’m getting an MRI is to make sure these other possibilities are not causing my memory loss.

MRI on Monday

My MRI is scheduled for Monday morning. Some date after that I will have an appointment with a neurologist as well. I’m not nervous about either appointment. Personally, I think my short-term memory loss is still a side effect of the brain fog caused by chemo. But I have researched enough cancer stories now to know that there are other possibilities, and I suppose it isn’t a bad thing getting more information about my brain health.

PS. I also found out I will be taking my port out. But that is a post for another day.

Song of the Day – Let’s Make a Memory

Talking about memories brings this classic Roy Orbison song to mind.

Bonus Song: Check My Brain

The bonus song is a little harder rock than I usually post on this page. I can’t help but think of this Alice in Chains song when thinking about going through a brain scan.

My story shared by Sanford Health

Eight weeks ago, I allowed a film crew from the Sanford Health marketing department to follow me around for an evening. They then also sat with me for the first part of my maintenance treatment the following morning. This interview is part of Sanford’s “We’re In This Together” series of videos and stories of people like me going through cancer treatments through Sanford.

The story and video they made from this video can be found on the Sanford Health website. There is an excellent picture of my wife and me in the article. I’ve also included the video they made below for anyone to see. 

I have to admit it is peculiar seeing me on video. I’ve always preferred to be behind the camera and not in front of it. But I figure if sharing my story in any way helps someone else, well, then its worth getting out of my comfort zone.

Here is a link to the Facbook post from Sanford Health about my story:

I’m not going to post anymore on this topic today. It’s time for me to get ready for the latest maintenance infusion of Rituximab. I think this infusion will be about the half-way mark for me.

Song of the Day: Kodachrome

Even though this isn’t my regular blog post, I’m still going to do a song of the day. I’ve always loved this Paul Simon song. Since I had to keep posing in front of a camera for the marketing team, I couldn’t help but have this song come to mind.

Bonus Song: A Day In The Life

Somehow I feel my cancer story would have made an interesting addition to this Beatles classic. “I read a blog today, Oh Boy…..”

Explaining remission to people can get tiring

Today’s picture has nothing to do with the post. It is Thanksgiving later this week in the US. Happy Thanksgiving everyone!

As a cancer survivor, I consistently have people asking me about my current status. I don’t mind when people do so, and I generally let people know that I am in remission. What does get old, though, is some of the responses I get from people who misunderstand what I mean by remission. In this post, I will briefly touch on what remission means to me and what I have found it says to others. A fellow cancer survivor asked me to do this post so she could share it with her family.

The definition of remission

Before going on, I would share this definition of remission from the National Cancer Institute:

remission 
A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.

National Cancer Institute

As I read the definition of remission, I can’t help but notice that the word cure is missing. I have always thought remission meant that cancer had been kept at bay for a short period of time. I never really thought remission meant anything other than that. But I’ve come to find out that others do.

Remission is thought of as a cure by some people

There are times when I tell people I am in remission they will say something like “oh, so you’re cured now” or “that’s great you were able to get rid of your cancer!” At first, I didn’t think much of it. But after this happened enough times, it started to become noticeable. I don’t know if it is because a lot of people have a different understanding of what remission is. Or maybe this occurs because people are hopeful that the remission is complete and there isn’t any cancer left in my body.

No matter what the reason, it just seems odd to me for people to act as if I have been cured after I say I’m in remission. Whenever someone acts like I’m cured, I can’t help but think of the maintenance infusions I go through every eight weeks. Plus, there are the scans I will likely have for the rest of my life to check the current status of my lymphoma. Even if my lymphoma never comes back as active cancer (which it likely will do), I will be treated by doctors as if I have a chronic condition for the rest of my life.

Learning to accept lymphoma as a chronic condition

I still don’t like it, but I’m learning to accept lymphoma as a chronic condition. Maybe that is why I get slightly irritated when other people seem to think I am cured. Perhaps people saying something about my being cured makes me remember that I am not cured and may have to go through full-blown chemotherapy again, or possibly something even harder on the body. I try not to think about what will happen when I fall out of remission. Yet, I find it hard to avoid the topic in my mind when reminded that there is currently no real cure for lymphoma.

Going forward I plan to stay positive about remission

Even though I get annoyed internally when people act as if remission is a cure, I try never to show my irritation. I hope to stay positive about being in remission. When people ask for more details, I let them know what lymphoma is and what my being on remission means. The person I am speaking with may someday have cancer or become a caregiver for a cancer patient, and I hope to pass on a positive attitude to them. Plus, helping to educate them may make their experience less of a shock when they have a personal encounter with cancer.

Today’s song: Don’t come around here no more!

Tom Petty and the Heartbreakers created the perfect remission song. In my head, I like to tell my lymphoma to stay away, and this song sums it up perfectly. This live version of the song shows how great of a group the Heartbreakers were. I feel sad I’ll never get to see them live again.

Bonus Song: Stand Back

This song obviously has nothing to do with cancer. But aside from the apparent “Stand Back” reference to being in remission, I can’t help but think of this line in the song: “No one knows how I feel, What I said unless you read between my lines.” That almost sums up trying to explain remission to people.

Bonus Bonus Song

OK, I know I usually only have two songs of the day. But, I can’t have both Tom Petty and Stevie Nicks on a list without posting the song they did together. That would drive me crazy if I didn’t include this song.

Launch of cancer podcast coming soon

I just wanted to drop a quick note to let all my readers know there is a reason I haven’t been posting a lot lately. In the last few weeks, I have been working with another organization on two very cool projects. The first project is a book I hope to have completed and published next year. This book will detail what my family and I went through going through cancer diagnosis and chemotherapy.

The second item keeping me very busy has been working on the podcasts. Yes, I said podcasts (as in plural). I’ve already mentioned I will be doing a cancer podcast. This project has moved ahead, and at the beginning of 2020, I will be doing a DadAgainstCancer podcast alongside this blog. The podcast will focus mostly on how cancer and cancer treatments impact family members.

Alongside the DadAgainstCancer podcast will be a second podcast dealing with veterans. This podcast will be similar to the DadAgainstCancer podcast. But it will focus on family members of veterans who are struggling. The as-yet named second podcast will deal with more than just cancer. Guests on this podcast will focus on what family members of veterans with PTSD, cancer, homelessness, or any other struggle, are doing to help their loved one.

I want to thank everyone for their continued readership and hope these new podcasts will be of use to some people out there. Also, in the future, the podcasts and this blog will have small advertisements. I’m hoping to do the advertising in a way that doesn’t become intrusive. Please bear with me as I implement all the upcoming changes.

PS. One other thing keeping me busy has been working on another book unrelated to cancer. This book is project management related, and I think it is kind of finished. I’ll know for sure after the editors are done tearing it apart.

Song of the Day: Video killed the radio star

Launching a podcast brings this classic Buggles song to mind. It happened to be the first music video played on MTV after the moon man landed. I decided against posting the original video. Instead here is a live performance from 2004:

Bonus Song: Radio Ga Ga

Since we are on the subject of radio. This track from Queen is just timeless. I wish I could have been at Wembley Stadium for Live Aid back in 95. I do remember watching it on TV though (probably on MTV, I can’t remember for sure)! Every wonder where Lady Gaga got her name….

Brain fog and being around too many people

To me one the worse side-effects from having cancer has been the brain fog. I have found playing games helps me fight the brain fog that prevents me from writing. However I have found nothing that helps with the memory issues associated with brain fog. In fact I feel because of this memory loss I feel that I am changing. In this post I will briefly share my memory loss issues related to brain fog.

I seem to lose all short-term memory at times

My family over the last couple of years has noticed my memory has gotten pretty bad. It’s not usual for people to forget some conversations, because they are thinking about something else while listening to the other person. But this goes way beyond that. It got to a point where my kids don’t like to tell me about anything they need to do, because they know later on I likely won’t remember it and get annoyed at them for not telling them. That is another major way my family has been impacted by cancer. My kids in particular never know what I will remember and assume I will never remember anything anymore.

Over the last year I have found it necessary to take notes in my phone about any conversation I believe is important (of course I often forget to do that…). Throughout the day I will look at my notes and will have forgotten a lot of what I have written down. Before I started taking these notes I started thinking the whole memory loss thing wasn’t real. There doesn’t seem to be any pattern as to what I forget or what I remember.

Avoiding talking with others

I’m not talking about situation where something seems forgotten and then someone says something that brings forth a memory and you say “oh yeah, I forgot that”. No, these memories seem completely gone. There are times I do say “oh yeah”, but I only do that to try covering up the fact I really had no clue what happened. It is getting quite frustrating and I sometimes find myself getting quite grumpy with people because of it.

Actually, lately I have tried avoiding any social situations where there are a lot of people around. The more people there are around me, the more likely it seems that I will forget important details that have happened in the recent past. About a week ago I found myself snapping at my oldest son because his puppy was being a puppy. I love my son and his dog. I love being around them. Yet I snapped at them for no real reason, other than I believe my memory issues were overwhelming me.

My dog has learned to take advantage of my memory problems

Lucy. It was actually while I was taking this picture and making a meme out of her that it occurred to me she might actually be taking advantage of my memory issues.

My memory problems isn’t all bad for everyone. Lucy, the Yorkie in our family, has learned to take advantage my memory issues in an attempt to get extra treats. Usually after getting a treat for peeing Lucy would go off and be pitiful somewhere. But now she just stays there acting as if she never got a treat. This sudden change in her behavior had me wondering about why she suddenly expects a second treat. Plus, she wasn’t always waiting for a second treat, only about half the time. This had me wondering if my short-term memory issues were causing issues with me remembering giving her a treat.

To test whether Lucy was abusing my memory issues I setup my webcam on the computer where I normally give her the treats. I recorded myself working at the computer for a whole day. At then end of the day I looked through the footage to see if there were times I would give her a second treat. Sure enough, almost half of the time I would give Lucy a second treat. When I gave her this second treat I would even say the things that I would normally say. I did not once recall giving her two treats for the same trip outside that day; yet the camera shows I did.

I now have a system in place to prevent myself from doing this. Getting that many treats would be bad for Lucy long-term. This whole situation does show how smart dogs can be though…

Hopefully my memory issues improve

As I close this post all I can do is hope that my memory problems improve. I’ve spoken with other cancer patients who had brain fog similar to what I experience; and their memories improved after a couple of years. Of course, I’ve also spoken with a couple of patients who feel their fog never got better and with yet other patients who never experienced brain fog. For the sanity of my family I hope to be one of those who is able to navigate out of the brain fog.

PS. Good news. I think we are closer to the launch of the podcast!!! Yeah!!!

Song of the day: Forgot to remember to forget

This classic song actually documents the opposite of the problem I have. But this song comes to mind when I think about forgetting. Elvis Presley originally recorded this song. There is also a Beatles version. But I happen to really like the Johnny Cash version:

Bonus Song: Going slightly mad

If I ever completely mentally lose it, I have a feeling it will be due to these memory issues. In this track Freddy Mercury and Queen explain how I feel at times. (and no, I’m not actually going mad yet).