In this post I will tackle a question submitted by a reader of the blog. The person in question is going to start R-CHOP chemotherapy next month and wonders if I used a public pool or hot tub while I was on chemo. A real simple answer to the question is: No, I chose not to, but I know many chemo patients who have used both a public pool and a hot tub. In this post I will briefly share why I chose not to use my hot tub while going through chemo.
Germs and bacteria are one issue
One of the reasons many people chose not to use a public pool or hot tub during chemo is because of germs and bacteria. Both public pools and hot tubs are notorious as a breeding ground for germs. Technically if the chemical levels are correct this should not be an issue. But I’ve noticed that hotel pools in particular seem to be very bad a regulating the proper chemical levels.
Germs and bacteria really didn’t play much of a factor in my choice not to use a hot tub. My youngest son has some sort of muscle or joint issue for which he is going through diagnosis. As such he uses a hot tub we have for him at home. Since I am the person who controls the chemical levels in the hot tub I have no fear of excessive germs or bacteria being picked up in our hot tub.
I think anyone on chemo has to make a judgment call as to whether they feel safe going into a public pool or hot tub. The immune system of someone going through chemo gets beat up pretty badly. I could understand why many chemo patients would avoid public pools and hot tubs.
Neuropathy was a bigger concern for me
The main reason I chose not to use a hot tub during chemo was neuropathy. Many chemo patients suffer from peripheral neuropathy while undergoing treatment. I wrote briefly about peripheral neuropathy recently in a post about the EMG experience. I was warned by an oncology nurse that soaking in hot water for too long could increase the chances of developing neuropathy. And searching online I found many occasions where people using a hot tub or taking long hot baths would develop neuropathy.
I also happen to suffer from hot feet. This is something I’ve mentioned to many doctors over the years, but so far has gone undiagnosed because some bigger medical issue has been in the spotlight. To me it is almost unbearable to wear socks and shoes for an entire day. That is the reason I wear sandals year-round, including when we have sub-zero temperatures. Actually today the temp will be just above freezing so I will be wearing flip flops and shorts when I take my trip into town (don’t worry, I’ll still have a winter coat on). I figured that since I am already at a high risk for neuropathy due to my hot feet that I would not tempt fate by using the hot tub while going through chemo.
I have recently spoken with an oncologist (not mine) who recommends his patients not use a hot tub or hot bath more than fifteen minutes per day. He believes chemo patients should generally be OK as long as their exposure isn’t too long. But, in my case he said I was probably better off not having used the hot tub because of my hot feet. He also correctly guessed that my hot feet got even worse during chemo. Of course I spoke with another oncologist who said people going through chemo should never use a hot tub. I don’t think there is a general medical concensus as to whether the hot tub is safe for chemo patients.
It appears to be a judgement call
As I wrap up this post, all I can say is that I believe each chemo patient will need to make their own judgment call as to whether going into a public pool or soaking in a hot tub is right for them. Also make sure to speak with your oncologist and possibly even pharmacist. Between searching online and speaking to various oncologists, I have found many answers supporting and opposing the use of both public pools and hot tubs. In my case, I did not risk using the hot tub because I feared peripheral neuropathy. And while going through chemo, I would not have even considered using a public pool because of germs and bacteria. Now that I am off chemo however I soak in the hot tub almost every day and look forward to swimming in the lake this summer (another source of bacteria). Hopefully this post will help some people trying to make this decision for themselves.
Today’s song: Twisting by the Pool
Today’s song comes from Dire Straits. Twisting by the Pool is really doesn’t fit into Dire Straits normal music catalogue. But it is a fun little song and came into mind during this post for obvious reasons.
Bonus song: Marry for Money
Today’s bonus song comes from Trace Adkins and only came to mind because the song happens to mention a hot tub. Yes, Phil Vassar would have been a more likely choice with his hot tub song. But even though I think Vassar is a great songwriter, I’m not a fan of his singing. Plus I should get bonus points for including an Adkins song, who my wife is a big fan of.
One question that seems to come up for a lot of chemo and maintenance patients is whether they will be able to work while getting treatment. The answer seems to vary widely depending upon how each person reacts to treatment. In this post, I will share my experience of working while on chemo and maintenance therapy.
I should establish what I do for work
Before actually discussing my ability to work while on chemo and maintenance I suppose I should establish what I do for a living. The main this I do is write. I used to write a blog about South Dakota Politics called SoDakLiberty. When I became sick last year it just honestly became too much to keep up with that blog, and I stopped. Plus the amount of time I put into the blog really didn’t align well with what little revenue I got. To replace that I now do research and ghostwriting for others about politics. Ghostwriting isn’t a bad gig, but it does keep my name from being connected to stories I am quite proud of writing.
Additionally I am working on two different books. One is almost completed and I hope to publish it at the end of this year. The other is in need of major rewrites; more on that later in this post.
Finally, my wife and I own a tax and business services office. For the office I act as the IT guy and quality control. This time of year I am absolutely swamped. I have been spending about fourteen to sixteen hours a day for the last few weeks reviewing returns. Luckily I can do this from home by remotely connecting into my computer at the office. With corporate deadline being this Friday I should soon be able to slow down a little bit.
Working while on chemo was tough for me
From September through December of last year I was on chemo. During the first few rounds of chemo my side effects seemed pretty mild. The main two side effects that would impact my work was fatigue and brain fog. Fatigue is an obvious one that would affect someone who is trying to write. It is challenging to put words together when all you can think about is sleeping.
The brain fog, or chemo brain as it is often called, was by far a worse side effect impacting my ability to work. It was dreadfully difficult to write while my brain fog was at its worse. I found it difficult to put words in the correct order. Actually much of what I wrote at that time came out almost like dialogue from a Tarzan cartoon. I would then go back and rewrite those sentences many times. Doing a five hundred word post would take me a few hours at that rate. As a comparison, I am almost up to five hundred words in this post and have been writing for about fifteen minutes.
As chemo went on I found a way to combat the brain fog. Each morning I would play word and logic games for anywhere from one to three hours. This worked great. After playing these games, my ability to put words together seemed to be back to almost full capacity. As time went on I didn’t have to spend as much time playing these games. By the end of chemo I would only have to play these game about fifteen to thirty minutes a day to clear the fog.
During this time I did very little work for the office. The girls seemed to be afraid they would be an imposition on my recovery. At the time though I wish they had sent me more work as I was going stir crazy!
The fog wasn’t lifted as much as I thought during chemo
As I said, during chemo I was using word and logic games to clear the brain fog. This seemed to work well enough. Looking back at the posts I wrote I am mostly happy with what was published (I’m never 100% satisfied with my work). But then I recently looked at four chapters of a book I wrote at that time. To put it mildly, those four chapters are a disaster. None of the paragraphs seem to tie into each other, and I am continually switching directions in each section. It is as if I wrote each section in those chapters without actually knowing what was written previously. It is so bad that I have decided editing isn’t going to work. I have now deleted all four chapters and will have to start over. It was earlier this month I deleted those chapters, and I must admit a certain amount of depression occurred for a couple of days afterward.
Working while on maintenance
Maintenance has been a different matter. The work I have done on my book since being on maintenance has been normal. The cutoff point between a disorganized mess and actual writing appears to be about one month after finishing my final round of chemo. From that time on I only see the usual grammatical issues I suffer from (such as ending a sentence with a preposition).
It was also around that time I really had to step up and start working for the office more. Tax season hits hard at the end of January and continues hard until mid-March. This is because March 1 is the deadline for farm returns; which our office has a lot of farmer clients. And March 15 is called corporate deadline; which is when partnerships and S-Corps are due. Earlier I noted that I have been putting in long hours. For the last few weeks on a typical day I am working at least fourteen hours a day, shuffling kids between school and activities, and trying to write at least a thousand words either on a book or blog post. Part of this is possible due to my inability to sleep.
Insomnia has not relented now that I am on maintenance. Just prior to maintenance it appeared I was starting to sleep a little bit longer each night. After maintenance I am now back to only a few hours of sleep per night. Today as an example I went to bed about two AM and was up at about five AM. My work doesn’t seem impacted at all. Actually, I am able to write better than I have for ages. Perhaps sleep is overrated after all.
Time to get back to work
Now that I am over a thousand words in this post I probably should get back to reviewing tax returns; corporate deadline is this Friday after all! In this post all I really wanted to do was share my experience trying to work and write while on chemo and maintenance. When tax season ends, I can get back to writing and find out for sure whether the brain fog no longer impacts my ability to write books.
Song of the day: Working in a coal mine
No, I don’t work in a coal mine. But writing a post about working just made this song pop into my head. This version of the song became a massive hit for Lee Dorsey back in the 60’s.
Bonus song: Play Something Sweet
The above song was written by Allen Toussaint. He wrote and produced a large number of hits back in the day. This track from Three Dog Night is also a Toussaint song. It wasn’t one of Three Dog’s biggest hits, but I’ve always liked the song. Plus it happens to be about a person trying to perform their job, being a musician in this case.
Bonus Bonus Song: I never been to Spain
This song is not written by Toussaint. Hoyt Axton wrote this hit and it is one of my favorite Three Dog Night songs. Music has helped me get through many tough times in my life, including fighting cancer. Songs like this remind me that in this huge world I am very happy to be here with my family.
Later this week I start my first round of maintenance therapy treatments. Choosing whether to actually do maintenance infusions was tough for me. I’ve spoken with other lymphoma cancer patients who also struggled with whether to do maintenance infusions. In this post I will briefly write about what maintenance is and why I am choosing to do maintenance.
Maintenance therapy is sometimes given after initial treatment has put the lymphoma into remission (no evidence of disease). It is used to make the remission last as long as possible by suppressing any lymphoma cells that can’t be detected by scans after the main treatment has finished.
Chemotherapy is sometimes used as maintenance therapy; however, immunotherapy (treatment with antibodies) is the most common type of maintenance therapy for people with lymphoma.
In my research I’ve found many studies that show maintenance therapy does extend remission for a good number of people. One things maintenance therapy does not do however is extend the expected lifespan of lymphoma patients. Basically maintenance therapy extends the time between the bigger treatment options, such as chemotherapy.
Rituximab is the maintenance therapy drug I’ll be using
Currently Rituximab is the standard drug used for maintenance therapy. This drug is a type of immunotherapy, which means it uses antibodies for treatment. In particular Rituximab is a monoclonal antibody. When writing about my chemo regiment R-CHOP I included this explanation of monoclonal antibodies from cancer research UK:
Monoclonal antibodies target proteins on the surface of cells. Rituximab targets a protein known as CD20. CD20 is found on white blood cells called B cells. It is the B cells that are cancerous in the most common type of non-Hodgkin lymphoma.
Rituximab attaches itself to the B cells and marks them. The cells of the immune system recognize the marked cells and kill them.
I still think it is a very cool concept that a persons own immune system can be used to target cancer cells. Technically this is already supposed to happen, but sometimes the immune system just doesn’t attack cancer like it is designed to. Theoretically maintenance therapy will keep the lymphoma at bay if it begins to spread again.
My particular maintenance plan is to have an infusion every eight weeks for the next two years. That is a lot of sessions. Good thing I have my port!
Maintenance therapy sounds like a good thing, but it has a downside
The concept of maintenance therapy sounds like something every lymphoma patient would want to go through. Being able to push another round of chemotherapy farther into the future is a good thing. But maintenance therapy does have its downsides as well. Actually some countries don’t even offer maintenance therapy due to these downsides and the fact it isn’t proven effective for enough people.
bloating or swelling of the face, arms, hands, lower legs, or feet
blood in the urine or stools
body aches or pain
burning or stinging of the skin
difficulty with breathing
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
flushed, dry skin
fruit-like breath odor
hives or welts, itching, rash
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or genitals
lower back or side pain
pain or tenderness around the eyes and cheekbones
painful cold sores or blisters on the lips, nose, eyes, or genitals
painful or difficult urination
pinpoint red spots on the skin
pounding in the ears
slow or fast heartbeat
sores, ulcers, or white spots in the mouth or on the lips
stuffy or runny nose
swelling of the tongue or throat
tightness of the chest
tingling of the hands or feet
troubled breathing with exertion
unusual bleeding or bruising
unusual tiredness or weakness
unusual weight gain or loss
For anyone curious, that was was 52 common side-effects listed. That doesn’t even include the less common side-effects or other possible side-effects which have yet to actually be linked to rituxumab.
I noted above Rituximab was part of my chemo treatment, being the R part of R-CHOP. My very first round of chemo infusion had to be split into two days. The main reason for doing so was because Rituximab had to be injected very slowly the first time to see if I would react badly to the drug. I’ve heard stories from many lymphoma patients that will experience major side-effects such as their throat closing or major nausea. Before even taking Rituximab a dose of Benadryl is given to the patient, and even that is not enough to hold off side-effects for many people.
At the same time I’ve the stories of many patients on maintenance who have developed long-term health issues because of these infusions. The tiredness and beat-down feeling that comes from chemo seems to be extended by many people taking maintenance therapy. Some patients going through maintenance therapy will get sick constantly and appear to have compromised immune systems. I was actually just speaking with someone that had to stop maintenance therapy after two sessions due to their inability to work anymore. Maintenance therapy is not chemo, but it can be just as damaging to the body for many lymphoma patients.
There are other maintenance therapy drugs out there now. Plus, more are currently being developed. So far I haven’t ready about any without major side-effects. It seems to be a matter of finding the maintenance drug with the least side-effects for a particular person.
So why am I doing maintenance
After going through some of the downsides to maintenance therapy it would seem that nobody would willingly choose to go this route. But just like anything in life it is important to weigh the positives and negatives. I won’t go any further into the negatives, since I think the above paragraphs covered some of those well enough. Instead now I would like to focus on the positives.
First, maintenance therapy does help many patients go longer without treatments such as chemo. It is true that not all patients get a longer remission. But enough patients do that I feel it is worth the risk. If maintenance therapy is able to push my next treatment years into the future I find it worth it. By that time it’s possible a cure could be found for lymphoma. Or even if a cure is not found there may be newer and less invasive treatment options available. There have been a lot of advances in the diagnosis and treatment of lymphoma over the last twenty years. I would expect the next twenty years to see advances we can’t even conceive of at this time.
Second, not all patients on maintenance experience major long-term side-effects. Yes, Rituximab is a nasty drug with some very bad side-effects. But not all patients have the same experience. If I find that I am starting to experience some of the side-effects I’ve read about or heard from other lymphoma patients I will simply end maintenance treatments. Once maintenance treatments begin there is nothing that forces anyone to continue maintenance therapy in the future. This is one area of healthcare where we the patients can actually have some control over our treatment.
Finally, the main reason I am choosing to do maintenance therapy is because of my family. I want to be around to help my kids grow. I want to be there for Ashton as he is going through diagnosis for his health issues. I want to go to Lawson’s baseball games and support him as he takes a continued interest in music and starting a rock band. I want to watch Dustin grow as a young man and smile as he makes the same mistakes we all made as young adults. I want to be there with Mindy experiencing this all together. I took a vow that included “until death do us part” and I plan to make that as far off in the future as possible.
Actually when I first mentioned I was questioning whether to have maintenance Mindy gave me “the look” and the looked like she was going to cry. She acted as if I just said I was wondering whether to keep living. That isn’t what I said or meant. But she seemed shocked and almost angry with me because I wasn’t sure if I wanted to do maintenance therapy. That look had a lot to do with my decision to go ahead with maintenance. If there is anything at all I can do to possibly extend time in remission I will do so. Mindy is truly my soulmate and I want to ensure we have as much time together as possible.
Wednesday is the day
This Wednesday is the day scheduled for my first maintenance therapy. I will admit to having a little bit of nervousness about receiving this infusion. But since I made it through R-CHOP mostly OK (I am still very tired and weak two months later) I feel that Rituximab infusions should go OK. I just keep focusing on the fact I am doing this to hopefully extend quality time with my family.
Today’s song – Just Fishin’
Being around for my family is a big reason I am choosing to do maintenance. I think the song Just Fishin’ sums up part of my reasoning very well. This song from Trace Adkins really shows what is important: spending time with family and creating great memories.
Bonus song – Cats in the cradle
The bonus song is one I’m sure everyone knows. Part of the reason I want to do maintenance is so I can do things like play catch with my boys. I look forward to the day when I sit back and think “he’d grown up just like me, my boy was just like me”.
Yesterday I had an appointment with my oncologist. Going into this appointment my wife and I were hoping to hear that I am in remission. We kinda heard that. So I am very happy to say that I in remission. In this post I’ll go further into why I say I kinda heard I am in remission.
During yesterday’s appointment the oncologist let my wife and I know the results of the biopsy tests. All but one of the tests had been completed. They all came back negative for active cancer. That is great news and theoretically I am now in remission. There is still one test she was waiting for from Mayo. Even though she didn’t think that test would change anything, she was reluctant to actually say I am in remission. I guess I can understand she is just trying to be conservative. Yet at the same time the main biopsy test that most likely would have shown any active cancer showed negative. I’m sticking with that test and calling myself in remission until told otherwise!
Also during yesterdays appointment we discussed maintenance infusions of Rituximab. Starting February 20th I will start my maintenance infusions. This was a tough decision for me and I will cover in a different post why I decided to go ahead with maintenance infusions over the next two years.
I also found out during yesterdays appointment that the results of my sleep study were ready. It was two weeks ago that I had the sleep study done and I must admit I hadn’t thought a lot about it since then. The oncologist told me the sleep study showed I do have sleep apnea and that a second sleep study will need to be setup to get me properly set up with a CPAP machine. Oh goody… Oh well, maybe that will help me sleep better at night.
I want to end this post on a good note. As far as I know I am now in remission! This is a great way to start 2019 and I look forward to spending a lot of time with my wife and kids this year and for many years to come!
Bonus Song – Feeling good again
I’ve posted versions of this song a couple of times on this blog. Now I will do so again. I can’t help but feel good about being in remission! This is a very good unplugged version of the song; even if the lack of a steel guitar is noticeable.
It has been almost a month since my last round of chemo. I wore the blue mask for a couple of weeks after the final round of chemo just to make sure I didn’t catch anything. At this point I am very glad I had been doing so. Yesterday I was taken down by a stomach flu bug of some type. The though of having this flu bug while on chemo makes me glad I wore the blue mask!
Actually last Halloween I blogged about my decision to wear the blue mask. At the time I felt the extra precaution of wearing the blue mask was worth attention it drew to me in public. During all six rounds of chemo I was pretty clockwork about using the blue mask and carrying hand sanitizer with me when I ventured out in public. Some chemo patients I’ve spoken with feel the blue mask is worthless. They may be right, but I feel comfortable with my decision to wear the mask. Going through a stomach flu like this during chemo would have been horrible, especially during the last few rounds as chemo got harder on my body.
I know some chemo patients struggle with the decision as to whether the blue mask is necessary. Personally I think it was worthwhile for me to wear the mask, especially since the flu and pertussis (whooping cough) have been going around. Yes I’ve heard some chemo patients say they made it through their treatments with no issues after deciding not to use the mask. But I’ve also heard of chemo patients being hospitalized by things such as the flu virus. In the end though it is up to each person to make their own person risk assessment.
It has been a few weeks since I have been able to blog. As I mentioned in my last blog each round of chemo has hit me harder. Round six was no exception to this trend. But I do have good news, I am now done with my R-CHOP chemo! And now that I am past the hump created by my sixth round of chemo I can get back to regular blogging again!
Last week I had my sixth and final round of R-CHOP chemo. The oncologist met with me prior to my round six chemo injection. She had determined based upon the PET scan I had done after round three and other factors that going past six rounds of chemo would not be necessary. I was so happy to hear this news. The fifth round of chemo had really beat me down and the thought of having three more rounds seemed impossible. She did mention however that I would have another PET scan and have to get a bone-marrow biopsy done to ensure the cancer is gone from my bones. If there is still active cancer in my bones she will come up with a plan of action based upon the PET scan and biopsy results. I am more than happy to move on from R-CHOP chemo and possibly on to other treatment options. Although honestly I just hope the R-CHOP kicked the cancer out of my bones and I can just start my two years of maintenance injections.
After the oncologist gave me the good news I had my sixth and final round of R-CHOP chemo. As with the other times receiving chemo I don’t remember much; the Benadryl really did a number on me. Recovery from this round of chemo has been particularly hard on me. For the last week and a half I feel like every part of me has been on the losing side of a boxing match. My energy levels were also at all-time lows. The few times I had to go out and see anyone in public I would use an energy drink and put every bit of energy into seeming normal. Such outings would leave me completely without energy for a day or so. During that time my wonderful boys really stepped up and helped me any way they could. I could not be more proud of them!
Yesterday I finally felt half-way normal. To celebrate I spent the afternoon ice fishing. Again the boys really helped me by getting my stuff out to the ice and helped me bring it back to the house afterwards. I didn’t catch any fish worth keeping, just a dozen or so perch that really weren’t big enough for anything. The lack of catching bigger fish really didn’t bother me though. I was just happy to get out of the house.
Today I feel even better. For the first time in a few weeks I actually feel good enough blog again. I plan to take a trip up north to help move my oldest son. Even though I won’t be much help in actually moving his stuff, I can still drive my pickup to help him out. Hopefully this upward trend can continue! And hopefully I don’t overdo anything; as I really do get tired and wore-out very quickly.
I’ll end this post here. This post was really about getting an update out there about my status. Also I wanted to ensure everyone knew I was still blogging. Actually I have the topics for dozens of blogs ready to go for this year. I just needed to energy to start blogging again. I appreciate the many messages I received during the past few weeks asking if I was OK. It never occurred to me that a lack of blogging by me would even be noticed. Again, thank-you to everyone out there for the support.
Now that I’m feeling better I can’t get this classic from Robert Earl Keen out of my head.
Last week I had round five of chemo. My blogging has been somewhat lacking since receiving my latest round of infusion drugs. Partly this has been due to my being busy with other projects. But honestly a bigger reason is because I feel just plain beat down. Each round of chemo seems to get harder on the body.
Overall I really can’t complain about the side-effects I’ve had while on chemo. The main side-effects I experience are brain fog, insomnia, and bone pain. I don’t experience debilitating nausea like some on chemo experience. But I have noticed over the last few rounds of chemo that each time I just feel more run down. Of course the lack of sleep may have a lot to do with this run-down feeling.
Over the last few days I’ve been reading the experiences of a lot of cancer patients, especially for those on the chemo regiment I am taking (R-CHOP). I can’t help but think of Forrest Gump when reading through these stories. I can hear him saying something like “Chemo is like a box of chocolates, you never know what you’ll get.” With so many possible side-effects it almost seems that each persons experience with chemo is truly unique. Plus many people on chemo, including myself, appear to have their chemo experience change each round. In my case it appears to get worse each time. But other chemo patients appear to have fewer side-effects with each round.
Today, a week after my latest round of chemo, I actually feel pretty good. It does make me wonder what round six of chemo will be like for me in two weeks. Theoretically that could be my last round of chemo, which at this point I wonder how worn down I will feel after that round. I guess I’ll find out in two weeks.
Last week I blogged about the catheter connected to my port being retracted. The surgeon didn’t think this would be an issue for receiving my chemo infusion. Yesterday had I round 5 of my chemo infusion and the port worked fine for receiving drugs from the IV, but not for taking blood draws. In this post I will share that story.
The chemo appointment started as it normally does. One of the nurses accessed my port by connecting a needle contraption through my skin into the port. She then proceeded to flush the port, which the surgeon said might actually undo the retraction. The port flushed fine and there didn’t seem to be any resistance. That was good. But then the nurse went to take a blood draw from the port and she was unable to get anything to return. Her and another nurse tried multiple flushes, I think around eight or so. For some of those tries they had me move my neck into different positions to see if that would help. Nothing made a difference. The flush would go through the catheter fine, but no blood would come back when trying to get a blood sample. After speaking to the surgeon over the phone, the nurse said we would get an x-ray to see what was going on with the catheter now.
As a recap this is the picture previously posted to recreate what my x-ray looked about a month and a half ago. In this picture the catheter is correctly going from the port, up to the neck and down through my jugular, and stopping just outside of the heart.
This next picture is how the port looked about a week and a half ago. Looking at this picture is shows the catheter being retracted into a loop. The end of the catheter is also further away from the heart due to the loop.
Finally, here is a recreation of the x-ray from yesterday. The loop is gone, but now the catheter is in a J shape in the jugular.
After viewing the x-ray I received a visit from the surgeon. He believed flushing the port must have caused the end of the catheter to straighten out. But it was not strong enough to completely extend the catheter. Since the catheter is still in the jugular and not in a smaller vein, the surgeon decided it was OK to proceed on to chemo with the catheter as it is. He noted the blood draw would have to be done on my arm. He also did a couple of flushes to ensure there was no resistance. He also verified blood draws were not possible. At the end of his visit he said we would look at this again in a few weeks after round 6 of chemo is done. After that he would be comfortable fixing the catheter, since I will hopefully be done with chemo treatments. My PET scan after the sixth round will decide if I have to go a full eight treatments. But my PET scan after round three looked good, so I hopeful the next PET scan will show no active cancer in my bones. If I have to go a full eight rounds I’ll speak with the surgeon to see what the plan will be then.
After the surgeon left, a tech from the lab came to take my blood. As usual my numbers were looking good. Each round of chemo my blood numbers have looked good and recovered well from the previous round of chemo.
Finally it was time to receive the drugs through my port. The saline bag flowed fine. Then the antibiotics were put through the IV and they ran fine. All of the drugs the nurse put in through the IV flowed fine.
Hopefully the catheter will be fine for round six of chemo, which happens to be scheduled for the day after Christmas. Fluids flowing from the port to the jugular are working good. The only problem right now is that the port cannot be used to do blood draws. Basically my ports catheter is acting as a check valve. Of all the problems one can have with a catheter or port this one isn’t so bad. But it is something that will eventually have to be dealt with. After I’m done with chemo I’ll have two years of rituximab maintenance infusions.
This week I had to visit my surgeon due to a retracted catheter coming from my port. It ended up not being a big deal. But I will have to keep an eye on it in case the surgeon has to do a repair. In this post I will share how I found out about the retracted port and my experience to figure out what the heck that even means.
My current adventure began last week; specifically on Tuesday, November 22, when I went to see the pulmonary doctor. Actually this adventure really started a few months ago I had been referred to a Pulmonologists for my breathing problems (some of which are documented here). I had to wait a few months in order to see the pulmonary specialist. Of course in the meantime a CT scan found my windpipe was being restricted by a lymph node. Additionally, just a few days after my first round of chemo the lymph node pushing on my windpipe had shrunk and allowed me to breathe again (hallelujah!). Even though my breathing was better I decided not to cancel the appointment with the pulmonologist. I still have some breathing problems, sleeping problems, and questions about how my lungs will recover from the cancer that spread into one of them.
The appointment with the pulmonary doctor actually went pretty quick. He looked at what was done so far and wanted to start off with a sleep study (which I’ll do in a about a month or so) and an X-Ray. After those steps are done he will decide what more should be done about my breathing problems. Thinking back I completely forgot to ask him about the effects of the cancer on my lung; oh well, I’ll save that for next time I see him.
Later that afternoon the nurse called me back to let me know the x-ray had come back looking good. Fluid that had been in my lungs in the past was gone. That was good news. All I had to do now in regards to the pulmonary doctor was wait to have my sleep study. It never occurred to me that having an X-Ray would lead to a visit with another doctor.
Late Friday of that week the results of the x-ray were released to my online chart. I don’t actually get to see the scan, but I can view the lab tech notes. Out of curiosity I decided to log on and review these notes. Here is part of what I saw in the impression section:
1. The catheter of the right chest wall port has retracted and the tip now projects in the region of the confluence of the right IJ vein and innominate vein.
Huh? My catheter had retracted? I couldn’t help but wonder what that meant. It sounded potentially bad. The catheter being referred to in the notes goes from the port just under the skin on my chest, up into the jugular in my neck, and down to just outside the heart. It is through that port and catheter that I receive my chemo treatments. I began to worry that a problem with my port would cause a problem with my chemo IV infusions.
I did try calling the oncology office, but it was late and they were already gone for the day. So I set up an appointment to speak with the surgeon who put in the port. There were problems with my port install originally, so I though it would be best to hear from him what was going on. Plus I like the surgeon. He knows how to explain things to people who don’t have a medical degree (something not all doctors are able to do).
On Wednesday of this week I had my appointment with the surgeon. I am glad I chose to speak with him. He was quickly able to reassure me there wasn’t a major problem. To explain the retracted catheter he first showed an x-ray of my chest that had been done about a month and a half ago. Below is my attempt to draw what I saw on this x-ray.
The triangle is the port, which is just under the skin on my chest. Connected to the port is the catheter. It runs under the skin up to the base of my neck, where it enters the jugular and travels to the heart. The surgeon said in this x-ray the port and catheter look exactly like they are supposed to.
Below I have attempted to draw what I saw on the new x-ray.
This x-ray shows there is a loop in the catheter between the neck and heart. The formation of this loop means the catheter is no longer right next to heart. Or in medical speak it is apparently “retracted”.
The surgeon noted catheters can retract, but he hadn’t seen one retract this far before. It could have been caused by scar tissue. We also talked about whether my lymph nodes shrinking had caused issues. I had a LOT of lymph nodes in my chest which had grown large and hard due to the cancer. When those lymph nodes shrunk the very topology of my body would have changed. It’s possible we will never figure out exactly why the retraction occurred.
Of course then I asked what had to be done about it. He noted the catheter did not appear to be pinched at all and it should work fine. If needed he can do a simple procedure to straighten out the catheter. Basically that would mean a small incision by the port, where he would stick a wire down the catheter to force it back into its original position. Even though that would be a minor procedure, he really didn’t want to do it while I’m still in chemotherapy. The surgeon also noted that when my port gets flushed during the next round of chemo the catheter may be forced to straighten out. He didn’t think that was likely, but it is possible.
In the short-term the surgeon said we wouldn’t do anything about this retraction. If problems with flow are seen during chemo then he would fix it. But if the chemo IV flows fine he would rather wait and do an x-ray in six months to see how the catheter looks then. In the short-term he said a retraction such as this really isn’t a big deal. However over the long-term, such as ten years, if I am still using the same port he will want it fixed sooner rather than later. He explained that as times goes on the bend in the catheter’s rubber could begin to degrade and cause a leak. It really depends on how long I will keep this port and catheter in. Right now I have one or two months of chemo left, plus two years of maintenance infusions. Hopefully after that this port comes out.
I guess I am back to my rambling ways as this post went longer than planned. In this post I shared my experience of finding out about a retracted catheter. More importantly I shared my experience learning what the heck a retracted port even is. Its times like this I miss the days when I would go years without seeing a doctor.
Chemo is hard on the mind and body. That almost goes without saying. But it isn’t just the chemo drugs that wreak havoc, some of the other drugs taken by chemo patients can have some major side-effects. In this post I will write about one of those drugs: Prednisone.
I am on a chemo regiment called R-CHOP. The “P” in R-CHOP stands for Prednisone, a type of steroid typically used for its anti-inflammatory properties. As part of R-CHOP Prednisone is actually used because it can “stimulate programmed cell death” in some cancer cell types. During the beginning of each three-week chemo cycle I take 100mg of Prednisone each day for five days. Since it is not an actual chemo drug, I really didn’t think it had any side-effects I would have to watch out for. Boy was I wrong.
When I first began chemo I noted Prednisone made me very hungry. This is still very much true. Unlike many chemo patients I have not lost any weight since starting treatment. Actually I am almost twenty pounds up since I first began chemo. The constant hunger during the week I am on Prednisone is basically insatiable. I won’t really complain about this side-effect too much. Recently I have found through smart diet and getting exercise I can counter-act the weight gain. After I’m done with chemo (and Prednisone) I’ll worry about losing those pounds I gained.
A side-effect of Prednisone I will complain about however is the mood swings. One moment I will be watching a movie and almost in tears because a character in said movie died, and the next moment I will feel great rage because my boys are fighting about nothing again. When I feel that great rage I have been trying to walk away. The boys are brothers, and they are going to fight. My yelling at them in a steroid rage is not going to do any good at all. It is hard to walk away though. When I get this great rage it feels like I have to let it out. Shortly thereafter I will find myself going to the boys and apologizing. They don’t know why I’m apologizing, other than the fact I’ve told them some of the drugs I am on for chemo can make me act strange. The wife and kids have been great about putting up with the mood swings during chemo week. Hopefully they will continue to understand and be patient for the next couple of treatment cycles.
While the mood swings from being on Prednisone is bad, it’s the withdrawals from the steroid that really gets to me. On Sunday of this week I finished my fourth cycle of Prednisone. During the days I am on Prednisone I actually feel pretty dang good (except for the mood swings). However the couple of days after no longer taking Prednisone I crash hard. The day after I start to feel weak with aches and pains cropping up all over my body. This gets worse for about two days. Yesterday, Tuesday, I felt so weak and sore that all I wanted to do was curl up in a ball and ignore the world. I don’t know if these symptoms are truly from withdrawal. It could be that the anti-inflammatory properties of Prednisone hide the aches and pains while I am taking the drug. Either way I feel like I’ve been hit by a truck for a couple of days after I’m done with the Prednisone.
I’ve spoken with other chemo patients who have similar experiences after coming off Prednisone. One person I spoke with had their oncologist prescribe something to taper down the withdrawal. I don’t really think this is necessary for me. Hopefully I only have two cycles of chemo left and feel I can cope with these symptoms now that I know about them.
One of the chemo patients I’ve spoken with also noted she experiences depression for a couple of days after coming down from Prednisone. I don’t think I experienced depression, but its hard to know. I definitely feel emotionally “down” after coming off Prednisone. If that counts as depression it is hard to say. This down feeling goes away after a couple of days. In fact today, Wednesday, I feel pretty upbeat and the emotional side-effects of Prednisone appear to be gone.
With only a couple of rounds of chemo left I won’t worry too much about the side-effects of Prednisone. I mostly shared my Prednisone experience in this post so other chemo patients suffering side-effects from the steroid know they are not alone. It is also my hope that friends and family of chemo patients suffering side-effects from Prednisone will get an understanding of what those patients are going through.