Earlier this week, I had my scheduled neurology appointment. This appointment was a follow-up to the one I had months ago for my memory issues. The only difference this time is that I had to utilize a tele-med meeting over the internet. In this brief post, I will share my tele-med experience. Additionally, I will briefly talk about what the neurologist said about my memory issues.
Tele-med is the way to do these appointments.
As I mentioned last week, the neurologist nurse called to ask if I would be OK with participating in a tele-med appointment over the internet. I thought it was a great idea. Not only would it save me the three-hour drive to Sioux Falls, but it would keep me away from a COVID-19 hotspot. And being someone who is used to working from home, it only makes sense I would do doctors appointments this way as well.
The actual appointment went very quickly. Well, it went quickly after the doctor got on the video feed. Just like at the clinic, I had to be in a “waiting room.” Even sitting in the comfort of my own home that seemed to take forever. But it was still better than waiting at the clinic!
I was able to hear the doctor clearly throughout the meeting. He did have problems hearing me at times. Next time I do this, I might tell my kids to get off the internet for the duration of the appointment. Something they were doing may have caused bandwidth issues going upstream. But overall I was pretty pleased with the quality of the tele-med meeting.
The neurologist recommended I change maintenance drugs.
The actual appointment went very quickly. I would say it lasted no longer than ten minutes. This appointment was a follow-up to my memory issues. I explained to the neurologist how the last few rounds of rituximab maintenance went. I told him that my memory problems seem to get really bad about five days after my injection. They stay bad for a few weeks and then slowly get better. Then, just as I feel somewhat normal, I get another round of maintenance.
Memory issues are not a listed side-effect for rituximab. Due to that, I actually wondered if this whole memory issue hasn’t been in my head (well, obviously it’s in my head, you know what I mean). The neurologist said there are times where certain medicines can cause unique side-effects for individual patients. He believes that is happening with me and seems quite concerned about it. I have to admit to feeling relief that he believes me. Before being diagnosed with cancer, I went through a few doctors that wouldn’t believe anything was really wrong with me. That left me with a bad impression of doctors.
His more significant concern was any long-term damage that could come from the continued use of rituximab. I hadn’t even considered that. The neurologist planned to recommend my oncologist switch to an alternative maintenance drug. Part of me is nervous about trying another medication. But a more significant part of me now fears any continued use of rituximab will permanently damage my brain.
Maintenance is coming up.
My next round of maintenance is coming up in about a week and a half. At that time, I’ll speak with my oncologist and see what she recommends I do. Maybe before then, she will call me and discuss my options. Or perhaps even utilize a tele-med appointment. That seemed to work well with the neurologist. No matter what, though, I have to admit I don’t think I want to retake rituximab unless it is necessary. Losing my mind is one of my biggest fears.
Song of the day: Sirius/Eye in the Sky
Talking about neurology and video conference with a doctor brought this classic Alan Parson Project song (well songs) to mind.
Bonus Song: Amnesia
Some years ago, the group Chumbawamba had their one-hit-wonder with Tubthumping. The band actually has music that I think is much better than that song. This song from Chumbawamba comes to mind when I think of memory loss.
The last time I blogged was almost two weeks ago. This delay has mostly been due to being busy with work. I work in a tax preparation office and have been busy blogging for that, though. At that time, I mentioned my maintenance infusion of Rituximab as canceled due to my wife being a presumed case of COVID-19. I now have a new appointment set up for my maintenance infusion next month. Also, the neurology appointment I have scheduled for next week is now going to occur remotely.
First, an update on my wife
Before talking about my upcoming appointments, I would like to let everyone know my wife seems to have recovered. Her fever broke about a week ago. Her breathing is still strained, but not near as bad as it was. The current breathing issues could very well be more related to spring allergies than COVID. That is one less stress with her having recovered!
Maintenance scheduled for the first week of May
Barring any health issues, I now have my next maintenance scheduled on month after it initially should have taken place. As I noted previously, my oncologist is concerned about my memory issues. She may change me over to a different medication. I will see what happens when I have my actual appointment. As of right now, the appointment is scheduled. The hospital has not stopped Rituximab infusions due to the coronavirus outbreak.
Neurology appointment next week.
I have a follow-up appointment scheduled with my neurologist next week to discuss my memory issues. Since Sioux Falls has become a hotspot for COVID-19, I was wondering if this appointment would still happen. Well, earlier this week, a staff member from the neurology clinic called and asked if I would be OK making a telemed appointment. I let her know I was more than happy to utilize a remote meeting. Sioux Falls is a three-hour drive from my house. It only makes sense to participate in the appointment remotely, especially with this whole coronavirus thing going on.
More posts to come next week
I’m looking forward to seeing how a telemed appointment works out. I’ll do a post about how the whole telemed experience went. There will also be another post about the results from the neurologist. Finally, this upcoming week I will have a post up about going times I have to go out in public during the coronavirus outbreak.
Song of the Day: Too Much Time On My Hands
Luckily, I have been busy working remotely for the tax office. That has kept me pretty busy. But, even with the tax deadline being extended, I now have a lot less work to keep me busy. I have a feeling this Styx song will be going through my head while I’m isolating at home with my family.
Bonus Song: Fooling Yourself (The Angry Young Man)
I thought I would stick with Styx for another song. If you haven’t noticed, I am very into music. This particular song was my personal theme-song when I decided to quite a job some decades ago and changed the direction of my career. That was a great move, and I have no regrets.
Actually, this isn’t all of Styx. This video has Tommy Shaw (of Styx) singing this song with a youth orchestra. I love the things that can be found on YouTube!
Since finishing chemo in December of 2018, I have had maintenance infusions of Rituximab every eight weeks. Next Wednesday, I was scheduled to have my next round of maintenance. However, with all of this coronavirus stuff going on, I wondered if maintenance infusions were even considered important enough that the hospital would keep doing these infusions. Also, my wife is presumed to have COVID-19, and my household is under quarantine for two weeks. In this post, I will briefly discuss whether maintenance is essential and what my oncologist had to say about my maintenance infusions going forward.
Is maintenance essential?
I belong to a few online support groups for lymphoma patients. It seems that different oncologists have different opinions about whether maintenance is essential when a global pandemic is going on. The clinic I go to appears to treat this as an essential procedure. I got my notification from the clinic confirming the appointment yesterday. I did contact my oncologist after getting that notification, but honestly, I forgot to ask her whether maintenance infusions were considered essential. Most of my time speaking with her was about other issues (expanded upon in the next section).
If you or someone you are caring for is going through maintenance, I would suggest calling the oncology team and finding out if they are still doing maintenance. I’ve spoken with many who live in communities with the rapid spread of the coronavirus. In those cases, maintenance infusions have generally been postponed. I think the term “essential” for medical conditions can change rapidly depending on the current coronavirus spread in an area.
The conversation with my oncologist
In yesterday’s post, I noted my wife is presumed to have COVID-19. Most of my phone conversation with the oncologist revolved around me quarantining myself away from my wife. She recommended I avoid her as much as possible and wash my hands regularly. Additionally, she wants me to wear a mask when I am around my wife. Basically, she wants me to be under quarantine away from my quarantined wife (my words, not hers). It is almost like I’m going through chemo again.
During the conversion, my oncologist noted that my immune system is compromised. It could be horrible for me to get the coronavirus. I’ve seen many lymphoma patients going through maintenance wondering if they have to be concerned. After speaking with my oncologist, I get the impression that we should be very concerned! Our immune system is not going to work as good as a healthy person’s immune system.
One other topic during the conversation with my oncologist was my memory issues. I affirmed that once again, I seemed to have memory issues. They seemed to begin about five days after receiving the Rituximab infusion and lasted for at least two weeks. Actually, now that I think about it, the memory issues lasted longer than two weeks. But they seemed to start getting a little better after two weeks. I’ll have to remember to tell the oncologist that.
The reason my maintenance was canceled
Since my wife and our whole household are under quarantine for two weeks, I knew next week’s appointment would not happen. What I didn’t know is if the oncologist would want to do it the week after, or cancel it altogether. What she decided to do was cancel the current appointment and follow up with me in a month. At that time, she will get an update on my status and my wife’s condition. If there continues to be community spread in Brown county, she might push any further maintenance even further into the future. Even so, due to my memory issues, I may be utilizing a different drug than Rituximab for ongoing maintenance.
I get at least a month off maintenance
Part of me is happy I get to another month without a maintenance infusion. Maybe I’ll start to feel better overall. But another part of me is quite unhappy about missing this maintenance infusion. I can’t help but wonder if changing my maintenance schedule will give the lymphoma cancer cells a chance to reorganize and start spreading rapidly again. I know my wife is terrified about me missing a maintenance infusion. All I can do is hope this time off maintenance doesn’t have any long-term repercussions.
Song of the day: I Want To Break Free
I have kind of a love/hate relationship with my Rituximab infusions. On the one hand, I love that the injections may keep cancer at bay for longer. But on the other hand, I hope to feel closer to normal now that I won’t be doing maintenance for at least another month. So I thought this great Queen song was in order:
Bonus Song: Red Barchetta
Since my song of the day had to do with breaking free, I thought I would share a classic song from Rush that epitomizes freedom for me. To me, Red Barchetta is not about a car, but rather about the feeling (no matter how temporary) of pure freedom. Below is a brilliant live version of the song.
The big news in the world right now is the Coronavirus outbreak. You can’t turn on the news or look on social media without hearing about it. Lately, I’ve had conversations with people asking if I feared the Coronavirus because I am currently going through maintenance infusions every eight weeks. No, I’m not afraid of the virus. But I do believe my wife is.
Why I’m not afraid of things like the Coronavirus
I live in a rural portion of a rural state. There isn’t a lot of people that live in Mina, SD. Yes, I work in Aberdeen, which is a much bigger city. But Aberdeen itself is pretty much in the middle of nowhere. Is it possible for something like the Coronavirus to make its way here? Yes, it is possible. But right now, I would instead prefer to focus on living life. I will deal with anything like the Coronavirus when and if it makes its way here.
Yes, my immune system does dive every eight weeks after getting my Rituximab infusion. But it doesn’t go down near as much as when I was getting full-blown chemotherapy infusions. Actually, I’m more nervous about my memory issues than I am about a compromised immune system.
My wife does worry about viruses
Now my wife has a different feeling about germs. She has become very protective of my health and makes sure anyone with a contagious illness stays away from me. When this whole cancer thing started, she thought I was going to die (to be fair, I thought the same thing). I have a feeling she believes that if I were to catch a virus or disease, it would put my life in danger.
I think sometimes cancer caregivers, such as my wife, actually go through a lot more stress about health than those of us with cancer. My wife was the one to make sure I had masks and hand sanitizer while I went through chemo. She is also the one that made sure anyone that was sick stayed away from me. Even now, if someone is sick at the office, she reminds them my immune system is not what it should be. I know she has taken care of a lot of little details behind the scenes to keep sick people away from me. Its almost like she has made it her mission to keep from getting sick ever again.
Last year there were some cases of whooping cough going through the area. I remember my wife making sure anyone with a cough stayed away from me. Actually, my youngest boys had a cough at the time, and they stayed away from me until they tested negative for whooping cough.
Having said all that, I do appreciate her looking out for me. Having a caregiver when going through cancer helps with the whole experience. And having a caregiver with so much love makes it even better to make it as a cancer survivor.
Life is too short to worry
As I wrap up this post, I can’t help but think of the old saying that life is too short to worry about what can’t be controlled. I think that sums up what I think of things like the Coronavirus. Yes, if it does come to my area, I probably will take precautions. But for now, I’ll live life as I want and make sure my wonderful wife knows she is appreciated.
Song of the day: What a Wonderful World
It seems to me people spend too much time worrying about what is wrong with the world. War, pandemics, politics. If more people focused on how great this world is how to make it better then… well I’ll let the great Satchmo explain it:
Bonus Song: Always Look On the Bright Side of Life
Since I’m on a positive song kick, I thought this classic track from Monty Python was in order.
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.
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.
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.
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
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…
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.
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.
Two days ago I had my fifth round maintenance therapy. I’ve had some followers of the blog ask me to write about my latest round. They wish for me to compare my current experience to that of my first round. Hopefully sharing this will give those going through maintenance, and family members of those going through maintenance, an idea of what ongoing treatments are like.
Maintenance always starts with a vitals check.
Every maintenance always begins the same way. The nurse will check my weight. This part of maintenance is the part I dread the most. While going through chemo, I gained a lot of weight. Going through maintenance, I have been unable to lose much of that increased weight. I know I should be happy due to the number of people who suffer massive weight loss. But this is still one of my most significant stresses, and no matter how much I try, it doesn’t seem I can lose weight.
The nurse then brings me into a room and checks my vitals. My blood pressure, oxygen, and temperature are the main vitals checked by the nurse. I never really worry about this part. My vitals are usually right in the range they need to be. Actually I this part of the appointment annoys my wife. She has high blood pressure and has never had readings as good as mine.
During the previous round of maintenance, my port worked with no problems. This past success led me to believe the port would have issues this time. What I mean by the port having issues is that blood will not ‘return’ when the nurse tries to draw blood through the port. Any time the port doesn’t work, I have to sit in weird positions and move my arms and neck around in the hope that blood will return through the port. Sometimes that works. If not, I get about a dozen syringes of a cleaner sent through the port to open it up. That usually eventually works. But it takes a lot of time, and each time the port doesn’t work I want to have the dang thing taken out and use a regular IV for now on. Technically since I am no longer doing regular chemo, I no longer need the port. It is just a lot more convenient to use than an IV.
As luck would have it though, my port worked! This was two times in a row my port worked with no issues. Maybe my port knew I was looking to get rid of it and decided its time to behave. It is quite possible the retraction that had been there has disappeared completely. Whatever the reason my port is now functioning properly. The nurse was able to draw blood with no problems.
As luck would have it though, my port worked! Two times in a row my port worked with no issues! Maybe my port knew I was looking to get rid of it and decided its time to behave. The retraction that had been there may have disappeared altogether. For whatever reason, my port is now functioning correctly. The nurse was able to draw blood with no problems.
Time to visit with the nurse.
After the blood draw, there is a wait while the lab does its testing to make sure I can receive my maintenance infusion. During that time I meet with either the oncologist or the CNP. Both of them have my utmost respect and trust. In this case it was the CNP’s turn to try getting the truth out of me. I say that because I don’t always mention all of my symptoms. During those times, my wife will pipe in and happily let the nurse or doctor know what I had failed to say.
During this visit, I let the CNP know my symptoms after the previous round. MY latest symptoms include a couple of days of absolutely no sleep; which was likely caused by the steroids. Then I would have a flu-like feeling throughout my body for about a week or two. For the rest of the eight weeks I would have low energy and a constant cough. The low energy and cough seem to get better the week before getting my next maintenance infusion.
After letting the CNP know I hadn’t had any other notable event, my wife spoke up. She mentioned a few weeks ago that I had banged my heel very hard and that I had possibly broken it. I explained I don’t think it had broken, just very badly bruised. Neither my wife or the CNP seemed impressed that I failed to have it checked out. But having enough of these types of injuries, I already knew what I had to do. Plus, I have had so many scans over the last year I didn’t want another x-ray. I will admit though; my heel hurt pretty badly this previous weekend walking around the convention center in Sioux Falls all day every day.
The nurse then talked to me about my sleeping issues. I won’t go into that in this post and will instead do a separate post about it in the future.
A surprise visit from the oncologist.
I usually don’t see the CNP and Oncologist during the same appointment. In this case, the oncologist came in to let me know my numbers had mostly looked good from the blood draw. She has concerns that my hemoglobin continues to go higher each appointment. My rising hemoglobin counts will be another topic I will save for a future post.
It is also possible the oncologist made an appearance because I had a camera crew following me this day, and they wanted to have her in some of the video footage. I had a camera crew with me to shoot a marketing piece for the hospital. Since I am so open about my experience on this blog, I had no problems letting them film me.
Time for the pretreatment drugs.
After the initial vital checks and interrogations, I am then led to an infusion room. These pretreatment drugs are used to prevent the normal reactions many patients have while receiving the maintenance drug Rituximab (Rituxin). First, I am given two Tylenol caplets and injected with Benadryl through my port. A saline bag is started and will continue to drip for the rest of the appointment, and I receive a small pretreatment bag of steroids via my port. Most people who use the Tylenol, Benadryl, and steroid mix seem to have few if any issues going through maintenance.
My vitals are rechecked before proceeding with the actual maintenance infusion. IT is at this point I start getting very tired. Apparently I am very susceptible to the “may cause drowsiness” portion of Benadryl. The rest of the appointment goes very quickly for me because I am going in an out of sleep.
Finally, the actual infusion of Rituxin
At this point, I finally receive my infusion of Rituxin. The infusion is split into two steps. First, they drip the Rituxin into my port slowly for a half hour. By going slow, any allergic reactions can be observed and dealt with immediately. A nurse will also recheck my vitals to ensure nothing is going wrong. As usual, there are no problems with this initial injection of Rituxin.
The rest of the Rituxin bag is then infused into my port over the next hour. I rarely remember this portion of maintenance due to the Benadryl. This time, in particular, it felt like about five minutes instead of a full hour. I don’t remember it this time, but I know they also check my vitals one last time. My vitals must have been OK because I was then released.
As usual, maintenance was a nonevent.
Maintenance day is pretty boring. Usually, it is just my vitals getting checked a lot, speaking with the oncologist or CNP, and then having all the drugs forced into my body. Part of me is happy maintenance is a nonevent. I’ve spoken with patients that had terrible reactions to Rituxin. The worse case I’ve heard of was a cancer patient whose throat closed, and heart started beating irregularly. Luckily nothing like that has happened to me when receiving Rituxin.
Hopefully, sharing this will alleviate any of the fears for other people who are about to go through maintenance. For most people, it is a nonevent. The only person I think maintenance treatment is hard on is the loved one that comes along for the appointment. In this case, my wife is the loved one there with me and watching over me as I sleep through the infusion.
Song of the day.
Today’s song is only marginally related to the post. When I writing about a possible broken bone the line ” Muscle and blood and skin and bones” came to my mind. I love this classic song from Tennessee Ernie Ford. Luckily I am now self-employed so I don’t have to worry about owing my soul to the company store..
My song of the day really had nothing to do with today’s post. So I thought I would make my second song even less related to today’s. The Highwaymen is the greatest super-group ever to have been assembled and this song was their crowning achievement. Even though this song isn’t related I often find myself singing this song. In particular I will sing “But I am still alive”. Actually, maybe this song is related…