Drinking alchohol while on chemo and maintenance

A loyal reader of the blog asked if I would do a post about whether I drank alcohol while I went through chemotherapy. The short answer for me is no. But this wouldn’t be much of a blog if I gave quick answers! In this post, I will explain why I didn’t drink during chemo and what I can drink now that I am on maintenance infusions. Further, I should note that most other chemo patients I’ve spoken to about this topic seem to have different answers about whether they do or don’t drink while going through treatment.

My alcohol use before chemo

I should probably briefly mention first that I did very little alcohol drinking in the year leading up to chemo. At the time I didn’t know I had cancer, but I knew there was something very wrong with me. I had problems breathing and was seeing doctors for what was suspected to be a pulmonary issue. At that time I could not drink beer at all. I would get an upset stomach with just one beer. If I had more than one beer my stomach would start to hurt badly. I could drink liquors such as my drink of choice whiskey. But even then I drank very little because of very low energy levels.

No alcohol use during chemo

While going through R-CHOP chemo, I did not even try any alcohol, whether it be beer or liquor. I don’t believe the oncologist said I couldn’t. Basically, I didn’t feel like drinking alcohol. The fatigue and other symptoms I generally felt didn’t leave me feeling like I could drink alcohol. 

Out of curiosity, I just looked in the “Guide to Chemotherapy” given to me by the oncology staff. In there it says:

Small amounts of alcohol can help you relax and increase your appetite. But alcohol may interact with some drugs so that they don’t work as well, or it may make the side effects worse. Be sure to ask your doctor if you can drink beer, wine, or any other alcoholic beverages.

A Guide to Chemotherapy by American Cancer Society

My advice to anyone wanting to drink alcohol while going through chemo is to speak to your oncologist beforehand.

Alcohol use now that I’m on maintenance infusions

I have been on maintenance therapy infusions of Rituximab for about a year now. After about two months of being on maintenance infusions, I did try drinking alcohol again. First, I tried a beer. Not only did it still impact my stomach, but it seemed worse than before. After drinking half a beer, my stomach started to hurt badly. I don’t know if it is a side-effect from chemo, a side-effect from maintenance, or a side-effect of something else I don’t know I have. No matter what the leading cause is, I’ve decided not to try beer again any time soon!

Now liquor I’ve found doesn’t impact my stomach. I don’t appear to have any adverse side-effects from drinking whiskey, rum, or vodka. Actually, I seem to have some pretty good tolerance for drinking liquor, probably due to the weight gain I experienced during chemo. Generally, I don’t drink more than a couple of mixed drinks. But I have found I can drink quite a lot without adverse effects.

If in doubt I would ask a doctor

For anyone reading this wondering if they can or can’t drink alcohol while going through chemo or maintenance, I would say to ask your doctor. Speaking for myself, I haven’t read anything that authoritatively says alcohol use should be avoided. But I know many of the drugs we take are hard on the liver and kidney; therefore, they may interact poorly with alcohol. At the same time, however, life is short! It seems even shorter when you have a cancer diagnosis.

Song of the Day: Mas Tequila

When thinking of liquor, the first thing that came to mind is this excellent party song from Sammy Hagar. Personally, I’m not a fan of Tequila, but I love the heck out of this song.

Bonus Song: Whiskey in the Jar

The Thin Lizzy version of this classic Irish drinking song is one of my favorite songs to listen to at the bar. Actually, I tend to sing along as well when I’ve had a whiskey or two. I also happen to love the Metallica version of this song, but the Thin Lizzy version is still the best, in my opinion.

Bonus Bonus Song: Friends in Low Places

This Garth Brooks song is probably one of the greatest songs to sing with a group at the bar. A drinking bingo night the wife and I went to was basically shut down for almost ten minutes while the bar sang this song. That was a good night…

The MRI went OK but seemed long

A couple of weeks ago, I posted about speaking with my MRI results with a neurologist. Since that post, I’ve had a few followers of the blog ask if I could document how the actual MRI of my head went. I can understand why they are requesting it. Going into a new type of scan can cause scanxiety. In this post, I will document what happened on the day of the MRI.

No prescan requirements

It seems a lot of procedures we cancer patients go through have conditions to meet. Most typically, we might be required to fast or refrain from eating sugary foods. For the MRI, there were no dietary restrictions given. The only restriction given to me was to refrain from wearing any clothing with metal in it. That was simple enough of a requirement to meet.

Filling out the paperwork

After being brought back to the scan area, I had to fill out a piece of paper. From what I remember, this was confirming my history with scans, medications, and anything metal in my body. At the time, I still had the port in my chest, so I think that was the only thing I had to note on that paperwork. 

Removing all metal

I was then put in a changing room with lockers and asked to remove any metal. That day I wore sweats, a hoodie, and flip flops (which I wear year-round). None of these items had metal in them. Those who do wear clothing with metal would have to take them off and wear a hospital gown. I didn’t want to wear a hospital gown, hence why I made sure I wore no metal. In my case, the only metal I had to take off was my glasses and the dental flipper device in my mouth.

Prescan conversation with tech

Before getting into the MRI, the tech let me know how the procedure would go. She said I would have to lay perfectly still the whole time for them to get a sharp image. About halfway through the process, she said I would get an injection of contrast via a needle. I was thrilled to hear a needle would be used to administer the contrast. I remember a previous scan (I believe it was a CT) where the contrast had to be taken orally, and I didn’t enjoy that at all!

She also said the machine would be very loud. This noise, she said, is caused by the magnets inside the machine. I was given a pair of earbuds and asked what kind of music I wanted to listen to (classic rock). Then she laid me back, and I was brought into the machine.

The first half of the scan

Actually, there isn’t much to report about the scan itself. I am not claustrophobic, so being inside a small tube didn’t bother me. I could, however, definitely see where someone afraid of small spaces would hate having an MRI done.

Even though the tech had warned me about the loud noises made by the MRI, I wasn’t adequately prepared for just how loud it would be. The MRI creates a large variety of sounds as it goes through its cycles. Some of the noises are so loud I could almost feel my eardrums being pounded. It is a wonder I didn’t come out of the MRI with a massive headache.

I believe the first part of the scan took about twenty minutes. Other than the loud noises, there isn’t much to report. It’s just a matter of laying still. Once in a while, the tech would say something through the headphones, I don’t remember much of what she said.

The second half of the scan

Upon completion of the first half of the scan, I heard the tech tell me I would be brought out of the machine for the contrast. She still wanted me to stay still during this process, or at least keep my head still. After injecting me with the contrast, she stuck me right back in the machine.

I think the second half of the scan took about the same amount of time as the first half. Part of me remembers hearing the tech say this part was shorter. But it didn’t seem shorter to me. By this time, my joints were starting to get sore from not being moved. I’m a person that has restless leg, and honestly, it takes a lot for me to keep still for twenty minutes at a time.

But I got through the second half of the scan OK. After the tech moved the bed out of the machine, she helped me slowly sit up. After a minute or two, she then helped me to stand. She explained this had to be done slowly because people will often fall after getting done with these scans. Falling is especially frequent if people try to stand right away.

I had to wait around for just a few minutes while someone verified the images were adequate. After getting the word, I was released and went off to the waiting room to let my wife know we could get out of there.

It was just a scan

A lot of people going into various types of scans often get scanxiety. Of course, a lot of that scanxiety is caused by worrying about the scan results. But after speaking with enough people, I’ve found many people (including myself at various times in the past) get a fair amount of anxiety about the scan itself. Hopefully, by sharing how my MRI experience went, it will help others relieve any scanxiety they have about getting an MRI.

Song of the day: Basket Case

I believe I have featured this song before as song of the day. I just can’t help but think of this song when talking about scanxiety. I was never a huge Green Day fan, but this is a good track.

Bonus Song: Everlong

Since I’m in a 90’s alt rock mood I might as well bring out this great track from the Foo Fighters. The scan seemed to take forever in the second half, which brought this great track to mind.

Finding out about my neuropathy from the neurologist

Last week I posted about my visit with a neurologist about my memory issues. In that post, I focused purely upon the diagnostics and discussions revolving around my memory issues. For this post, I will blog about a few other topics I discussed with the neurologist. 

Neuropathy in my legs!

The biggest shock for me during the neurologist meeting was to discover I have peripheral neuropathy. After a series of questions, the neurologist took a small needle out of his jacket. He then proceeded to prick my skin by the ankle. I could not feel the needle at all. He continued to keep piercing my skin every couple inches, going towards my knee. When he reached just a few inches below my knee, I finally began to feel the needle sticking into my skin.

The fact I couldn’t feel those needle pricks came as somewhat of a surprise to me. I thought neuropathy meant I would feel lousy pain all the time. Apparently, there are different symptoms that people can have from peripheral neuropathy. Looking back, I do recall having a buzzing/tingly feeling in my feet and lower legs, but I never really thought much about it. Additionally, I do get what I assumed was charlie horse feelings in my feet, which I now wonder if it has been neuropathy.

After the needle, the doctor checked reflexes in my legs. I was surprised to find I had little or no reflexes in various parts of my lower leg. In particular, my ankle appears to have almost no reflexes. Again, looking back, I probably should have known something was wrong. I do seem to have problems standing still. Sometimes when standing, my ankles will almost seem to give out. Other times when taking stairs, my foot won’t always be in the position I would expect it to be. These odd symptoms appear to be part of the neuropathy.

The neurologist believes the neuropathy is a side-effect of the chemo regiment I went through. In particular, he thinks the neuropathy is a direct result of my infusions of Vincristine (Oncovin), the O part of the R-CHOP chemotherapy I was on. Right now, the doctor doesn’t want to do anything with the neuropathy. We will monitor and go from there if my neuropathy gets worse or doesn’t improve. 

Shaking hands

For as long as I can remember, my hands have shaken. It usually isn’t a large shake. It’s somewhat similar to the involuntary shiver someone gets when it is a little bit cold. While this has made doing things such as soldering and painting slightly tricky at times, it hasn’t impacted my life very much. Plus, it doesn’t seem to have gotten any worse or better over the years. My shaking hands seem to be a regular part of me.

My shaking hands is a part of the conversation with the neurologist I should have taken notes on. He gave me an excellent explanation as to why this happens. The neurologist also let me know there is no need to worry. Finally, he gave me a ten-dollar name for the condition. Since it was nothing to worry about, I didn’t pay enough attention to what he called it so I could remember it now. But it was good to know my shaking hands’ condition is not likely to be related to any deeper medical issues.

Bone abnormality in my head

Before seeing the neurologist, I had an MRI of my head performed. The MRI notes included mention of a small irregularity on a bone in my head. Since I was able to speak with a neurologist, I thought this was the perfect time to ask what this abnormality was. At this time, the doctor says this doesn’t appear to be anything to lose sleep over. The anomaly was present in a prior PET and CT scans. The neurologist noted this abnormality doesn’t seem to have changed between scans. My future remission scans will let us know if there are any changes in the state of that abnormality. But at this time, he does not believe it is something to cause concern.

Back to see the neurologist in four months

As I noted in my prior post, I will see the neurologist again in four months. Mostly he will be following up on my memory issues. But he also wants to ensure my neuropathy has not gotten worse. Additionally, by then, I will have had another CT scan. He wants to ensure the bone abnormality has not changed. I hope that this future appointment will be quick and boring.

PS. On a side note, I have the equipment I need for my upcoming podcast. I am very much looking forward to adding a podcast to this site!

Song of the day: Rockit

Today’s song of the day falls very much outside of my typical music. But this 80’s song from Herbie Hancock has some impressive animatronics that reminds me of my lower legs and ankles. With no feeling, it almost seems like my lower legs have become animatronics just like in this video.

Bonus song: Sirius – Eye In The Sky

Since I started with 80’s songs outside of my usual taste, I thought this classic track from Alan Parsons would be worth including. This song has nothing to do with today’s post, but I like this live version of the song and thought others might as well.

My visit with the neurologist for memory issues

A couple of weeks ago, I mentioned the doctor had halted my regularly scheduled maintenance infusion of Rituximab. This temporary halt was so my short-term memory issues could to further diagnosed. The oncology staff set me up with an MRI appointment followed by a visit with a neurologist. In this post, I will discuss how the meeting with the neurologist went. I will note this post is only going to focus on the brain part of my visit with the oncologist. In a future post, I will relay other conversations I had with the neurologist.  

Feeling this was a waste of time going in.

Going into this appointment, I had this feeling that I was wasting the time of the neurologist. I already had my MRI completed a week prior. The oncology nursing staff notified me that nothing worrisome was present in the scan. That was great news. There was no sign of cancer or other abnormalities which could be causing my memory loss. At this point, I figured my short term memory loss was a side effect of the Rituximab infusions I’ve been taking every eight weeks.

The appointment was worth it!

I was wrong about the appointment being a waste of the neurologist’s time. The neurologist seemed glad I came to see him. I found the meeting to be very valuable to me. I’ve got to remind myself that sometimes doctors refer me to specialists for a reason. In these situations, I tend to get stuck in the mind-frame that people more deserving of treatment need to see these specialty doctors before I do. But in reality, I have more than enough medical issues that I should be thankful to get such excellent medical service in all areas.

Results of my MRI.

First, the neurologist went over my MRI results. As noted earlier in this post, there was nothing worrisome in the scan that would explain my memory loss issues. But there was mention of a small bony area in my skull, which looked odd (my words). This bone variation had been noted on a prior CT scan and has not appeared to change since then. The neurologist stated this doesn’t seem to be anything worth worrying about at the moment. But long term, he wants to ensure this area does not grow.

Verifying my symptoms.

Before meeting with the neurologist, a couple of grad students asked me a lot of questions. The students also led me through a series of logic tests. The doctor let me know my analytical skills seems to be quite sharp. I related my experience with brain fog during chemo and how I fought the fog with logic games. Since being off chemo, the brain fog slowly lifted over time. That is except for short-term memory loss. 

He also noted that I seemed to be handling myself very well, both mentally and emotionally. I did relate the bit of depression I had earlier this year. But since then, I have been excellent and looking forward to each day. Since getting past that bit of depression, I don’t seem to have had many brain fog related symptoms other than short-term memory loss.

Finally, the neurologist had me walk through my short-term memory loss symptoms. I let him know it was other people that were informing me about the memory loss. I would have the same conversation just minutes apart and have no recollection of the earlier conversation. I also related how I used a webcam to verify my dog was taking advantage of my memory problems

So far, I haven’t had problems remembering what I’m doing while driving or have feelings of being completely lost. I forget conversations and such in the short-term. Being unable to know if I’ve had a conversation before, has also caused me to avoid public situations around other people. It doesn’t seem consistent and seems worse the few weeks following maintenance treatment. Well, at least family members tell me its worse at those times.

The neurologist thinks this is a side-effect of the infusions or chemo.

At the end of the appointment, the neurologist let me know he believes I am suffering a side-effect from the drugs taken. Likely it is a side-effect from the Rituximab, although it was possibly still a side-effect from chemo a year ago. The fact the memory issues seem to coincide with my maintenance treatments seem to back up that theory. But he also noted it is excellent the other brain fog related items I had during chemo are absent.

I will follow up with him in four months.

I went into this appointment, thinking I was going to waste the neurologist’s time. Not only did I appear not to waste his time, but he also wants to meet with me again in four months to see how I’ve progressed. He informed my oncologist of his findings and recommended I go back on maintenance right away. I agreed with him that this one possible side-effect is not reason enough to stop maintenance. I only have about a year left of maintenance anyhow, and I want to stay in remission as long as possible!

PS. I did start maintenance infusions the very next day after this appointment. My oncologist wasted no time.

PPS. In a future post, I will briefly discuss other things the neurologist was able to explain about me that had nothing to do with the MRI or memory loss.

Song of the day: Feeling Good Again

I’ve shared this classic Robert Earl Keen song a few times. Leaving the appointment with the neurologist I was feeling pretty good. I couldn’t help but think about this song!

Bonus Song: Brain Damage

Before getting the MRI results, I had this classic Pink Floyd song going through my head occasionally. I kept wondering if maybe there was something wrong with my brain.

My troubled port is out, I kind of miss it now

The port that was installed in my chest. You can see the bends where the catheter entered the neck and jugular.

For a little over a year, I have had a port in my chest to receive infusions. Last week I had this port removed. With it gone, I keep finding myself reaching for where the port was and almost missing it. In this post, I will briefly explain why I had the port taken out and why I would miss such a thing being in my chest.

My port was a problem from the start

In early September of 2018, I had my port installed. Usually, getting a port installed is a short routine procedure. My surgery took a long time, and the surgeon ran into multiple problems. I had so many cancerous lymph nodes in my chest that the surgeon couldn’t install the port on either side of my chest and enter a vein right by the heart. Instead, the surgeon had to run the ports catheter up my neck and into my jugular vein. I still remember seeing all the holes in my chest from the different attempts made by the surgeon to install the port. 

My port catheter became retracted

Last fall, while I was still going through chemo, I had an appointment with my pulmonary doctor for long-term breathing issues, which have plagued me for many years. During that appointment, an x-ray tech took a picture of my lungs, and my port because they are in the same place. The good news from that x-ray is that no fluid was present in my lungs. But at the same time, the x-ray notes mentioned something about the port catheter being “retracted.” In this post, I tell the tale of the retracted port. The catheter going from the port to my heart had a loop in it; that was causing the retraction. I’ve also included my drawing of what the retracted port catheter looked like in the x-ray. 

Knowing about the retracted port catheter apparently caused my problems to start. During round five of chemo (Dec 5, 2018), my port would not allow blood to be drawn. It would allow fluids into my body, but blood could not be drawn out of the body. Another x-ray was taken. The loop in the catheter was gone. Instead of looped, the catheter was folded up like a J. My post about that experience is here

From there on, it was hit and miss whether my port would allow blood to be drawn. The port did get me through all six rounds of chemotherapy and almost a year of maintenance infusions. It was quite annoying on the days the port did not work. I would have to sit in weird positions, pretend to cough, and a multitude of other things in the hopes the catheter would allow blood draws.

The final straw.

During my latest round of maintenance, the nurse was unable once again to get a blood return. Unlike previous times, this time, there wouldn’t even be a small hint of red. Nothing at all would return. It was at this point the oncology staff and I decided it was time for the port to go. The port was there to protect my veins from a couple of hazardous chemo drugs I had last year. For maintenance infusions, the port is nice but is not needed.

Getting the port taken out

After getting the OK from the doctor, the oncology staff made an appointment for my port to be removed. Within the week, I would have my port out. That appointment happened last week. Honestly, there is nothing to report about this appointment. A local numbing shot was used, and he took it out in his small procedure room. No hospital check-in was required.

I think the whole procedure took about twenty minutes. The surgeon made a small incision to remove the port. With the catheter still attached to the port, the surgeon then pulled the catheter out. There was a weird tingling feeling as the surgeon pulled the catheter out. That is all there is to report about this procedure. Luckily it went much smoother than the surgery to install the port.

Now I miss the port

It has been a week now that I’ve had the port out. Oddly I’ve found myself missing the port. Over the last year, the port had indeed become a part of me. I mean that more in a spiritual way because obviously, it was a physical part of me. When I was stressed out for any reason, I would find myself rubbing my fingers over the port. I would also rub the port area when I was trying to think of how to phrase a sentence while writing. Looking back, I don’t think I realized I was doing this. But I can remember doing it often enough that I know I must have been rubbing the port a lot.

Oddly I think the port had become something of a worry stone for me. This odd relationship with my port created something of a situation after getting the port taken out. While the incision site didn’t hurt, it was tender. I found myself rubbing the area and getting reminded by a shot of pain that no port was there anymore. Now that the tenderness is gone, I think I’ve finally retrained myself not to try rubbing the port.

Hopefully, I won’t need another port

Even though I kind of weirdly find myself missing the port, I do not want another port installed. If that were to happen, it would mean I’m starting full-blown chemo again. My biggest hope right now is that I will be in remission long enough that a better treatment method will be available for me. I hope this for all cancer patients. Yes, there are some great newer treatments, such as CAR-T therapy, but even those treatments are failing on some patients. I genuinely hope for a day where ports are no longer necessary for cancer patients.

Song of the Day – Mr Roboto

At a cancer charity event a while back, I was talking with a young child who also had a port installed. He felt an instant connection to me when he found out I also had a port installed. One thing we did was sing the chorus of this song together since the ports make us cyborgs.

Bonus songs – Christmas concert

The bonus song has nothing to do with this post. It is the three videos I took of my two youngest sons at their school’s Christmas Concert. They are a big part of why I have been doing everything I can to fight off cancer.

The first one is my middle song Lawson playing percussion with the HS band. In the fourth song, he plays the spoons (like out of the kitchen drawer spoons).

Up next is Lawson singing with the HS Choir.

And last, but not least, is my youngest son Ashton singing with the 7th-grade choir.

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).