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. 

My own cancer isn’t what causes me the most depression

Before I start, I want to say that I am not suffering from depression. But I do have a lot of depressing moments. These moments of depression, however, are not directly caused by my cancer. Instead, these moments of depression are caused by the cancer present in others, specifically in children. In this brief post, I will blog about knowing so many children that have cancer.

I know too many children with cancer

Over the last few years, I have followed the progress of two different friends with children that have cancer. Both of these cases have had a lot of ups and downs. And currently, both kids are fighting hard against what appears to be a huge uphill battle. These poor kids have endured many rounds and types of chemo, radiation, stem-cell transplants, Car-T Cell therapy, experimental drugs, and who knows what else. For both of these young men, there have been multiple times where things appear are looking better. And then wham…. Suddenly things are worse than they were before.

Additionally, due to this blog and other means, I have gotten to hear the stories of dozens of children fighting cancer. I have spent countless hours speaking to parents about their children. Most of this time I spend just listening. Some of these parents feel like they have nobody to talk to truly. I have no problem being an ear for such people. If anyone reading this needs someone to speak with, I will make my cell phone number available.

At the end of the day, I follow the progress of probably almost three dozen children fighting cancer. Three dozen might not sound like a lot to some people. But to me, that three dozen children seems like an unbelievably high number. I mean, these are children with cancer. I have a long life of making poor decisions and can look back at many possible ways I got my cancer. But these children might not even have a long life thanks to cancer. It can get overwhelming when I think about it.

What keeps me upbeat

Even though it can get overwhelming, I’ve learned not to let it overwhelm me. Last summer, when I was going through depression, I was able to speak with someone who helped me and continues to do so. I am generally back to being a pretty positive person. When I start to get overwhelmed by the pain and suffering of children with cancer, I begin to focus on what I can do to help them. Specifically, I focus on this blog and the upcoming podcast. I have found sharing my story has helped some of these parents get through their struggles. By reading what I go through, these parents sometimes feel they understand what their child is going through.

That’s me dressed as a Ghostbuster! Get ready to see a lot more of that plus other costumes in 2020!

The other thing I do to get through the onset of depression is to focus on what I now call my “geek charity initiative.” Last year I joined the South Dakota Ghostbusters (SDGB). The SDGB is a group that dresses as Ghostbusters and raises money for charity. There are other related groups I am hoping to join in the future. Specifically, there is a superhero and a Star Wars group I hope to join. I need to focus on getting costumers together. These groups do beautiful things for the community. Not only do they raise money for charities, usually relating children, they also visit sick kids in hospitals. Bringing some joy to a kid that is very sick is one way I feel that I can be of help. I hope to do as much of that in the future as I can.

My plans for this year

As I wrap up this post, I am feeling very optimistic. I have plans to keep this blog going. Additionally, I will be doing a podcast to accompany this post. Actually, a friend of mine is trying to talk me into doing a blog and podcast about my “geek charity initiative.” I might do that. There are at least a few charity events this year, which I hope to attend in full costume. I fully plan to find ways to help as many kids with cancer as I can this year.

Song of the day: When the Children Cry

This song from White Lion is more about what we adults are doing to mess up the world for future generations. But yet I can’t help but think something we adults have been doing is to blame for so many children (and adults) having cancer. For that reason this cheesy 80’s hairband ballad is today’s song:

Bonus Song: Ghostbusters

Yes, I am going to include the theme song from Ghostbusters by Ray Parker Jr. The movie Ghostbusters had a significant impact on me as a kid, and now as an adult, I pretend to be one. I ain’t afraid of no ghost!

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.