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.