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.

My port mostly worked for round 5 of chemo

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.

My port catheter has retracted. Huh?

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.

Getting the port installed in my chest

21810462Yesterday I blogged about learning just how widespread my lymphoma cancer was. My body seemed to look like a fireworks display in the PET scan. Due to the widespread nature of the cancer and other factors it was decided it would start chemo soon. As I continue documenting my cancer experience it is time to write about getting a port installed in my chest to facilitate chemo.

Wednesday, September 5, was the day I had a PET scan performed and was able to see the fireworks. The oncologist said a surgeon would be calling me soon to hopefully get a port installed in my chest on Friday. She explained the port would allow the chemo drugs to go directly into a major vein. If that is installed and if insurance pre-approves the chemo drugs she hoped to start my treatments the next Monday.

On Thursday I got a call from the clinic to set up a consultation appointment with a surgeon late Friday morning. I took the fact that this was a consultation appointment to mean that I would not likely get the port installed on Friday. This kind of annoyed me. But then I should mention at this point everything was annoying me; and my family can probably attest to that fact. My breathing had continued to deteriorate. Even simple things as getting out of a chair or walking across a room were leaving me breathless. The inhalers I had been using to improve my breathing were basically useless at this point.

On Friday morning, prior to my appointment with the surgeon, my oncologist called to ask how I was doing and the status of my port. I let her know I had an appointment later that morning. She said she would work with the surgeon to come up with a plan. Part of me was annoyed she didn’t know the current status; but another part of me was happy with the fact a doctor was calling me instead of having a staff member do it.

The consultation with the surgeon went very well. He is a very likable guy and I could relate with him right away. One thing he did that nobody had done to that point was ask my wife and I “has it hit you yet?” We had to admit it really hadn’t. It seemed everything was going so fast.

During the appointment, the surgeon took the time to explain to me what exactly a port is and why it was important to be installed. Since the chemo drugs have to be injected into the bloodstream intravenously he explained a port makes the whole treatment process go smoother. Receiving chemo drugs the traditional method is very rough on the veins in the arms. As each treatment passes it may be harder for staff to get a good vein.

In order to facilitate the chemo treatment process a port can be surgically installed into the chest, the surgeon explained. What he planned to do was perform a surgery from the front of my shoulder (I believe he said left at the time, I could be remembering wrong.) He would insert a catheter into a vein in my shoulder, which would run to a small device inserted just under the skin in my chest. He would use his finger to actually create a small cavity the port could rest in. When the procedure was complete I would be able to receive injections (or even blood draws) by putting a special needle through my skin into the port. Since the port was always connected to a vein it mean oncology staff wouldn’t have to fight with find a vein every time I had chemo. He showed the type of port he would be installing, it was about the size of a quarter. The type of port I had installed can be viewed on this website.

After explaining the process the surgeon answered all of the question that my wife and I had. Actually he made sure this was something I wanted before proceeding. The he said he will work to figure out when the surgery could be done. Usually he does surgeries on Tuesday, but he understood from talking to the oncologist that we wanted the port on Monday. The surgeon let me know him and his staff would figure out a way to get the port installed on Monday morning and that I would get a call in the afternoon.

That afternoon I did get a call from the hospital to set up the appointment for my surgery early Monday morning. They were able to schedule an operating room with a bit of shuffling. As with most surgeries I was told to fast the morning of the surgery. I was also told not to take any ibuprofen that weekend. It is good that was mentioned. I’ve never really had a lot of surgeries before and I had no idea that ibuprofen is a blood thinner. My back aches so much that taking ibuprofen is almost second nature to me by this point.

The night before the procedure I remember looking forward to getting surgery. I didn’t care about the port at this point. Really all I wanted was to be knocked out so I didn’t have to worry about my breathing problems anymore. By this time I was getting very little sleep and any amount of activity, including talking, would leave me breathless.

In the morning my wife took me to the hospital and I went through the normal check-in process. Before surgery I remember speaking briefly with the surgeon. I also remember being wheeled into the operating room and the surgeon joking around with the OR staff using a quote from The Waterboy (I love that movie). That is the last thing I remember from before the surgery. Those knockout drugs are amazing!

When I woke up I remember speaking to my wife about the procedure. She had been worried during the surgery because it took a lot longer than had been planned. The surgeon had run into multiple problems. He first tried to connect to a vein in one of my shoulders. But there were so many lymph nodes and they were so rock hard that he could not get a clear path. He tried to access a vein from the other shoulder and he ran into the same problem. The front of my two shoulders show the multiple attempts me made to find a vein. It looks like a little mine field had exploded.

Since the surgeon was unable to access a vein from my shoulder he had to access a vein in my neck. The port was installed on my right chest and the catheter runs under my skin to about half way up my neck. The catheter was then surgically installed into a vein running through my neck. The path of the tube can be seen since it is just under my skin. He also said the port is not inserted as deeply as he usually likes due to the problems he ran into. When looking at my chest there is a lump that is actually caused by the port. But even with the problems the port was installed and was ready for use.

After the surgery my wife said the surgeon and the oncologist met with her for about a half hour. They talked about the procedure and what would happen going forward. I really appreciate the fact both doctors took time to speak with her and keep her informed. It was then my wife found out chemo might not happen that day since the insurance had yet to pre-approve all of the chemo drugs. But that is a story for the next post.

At discharge I was given a prescription for some of the good painkillers, which I only used for a day. I really don’t like the way those painkiller make me feel so I use them only as necessary. I was also told not to lift anything for a few days and to take it easy.  Since I still had my  breathing problems I found it unlikely I would have the urge to do anything stupid like lift heavy objects.

I’ll end this part of my cancer documentation here. In this post I blogged about meeting the surgeon and getting a port installed in my chest. I’m thankful I had a surgeon that was good enough to deal with unexpected barriers and come up with alternatives in order to get my port installed. In the next post I will blog about my chemo experience, which I was starting to get nervous about.