The ongoing saga of the port

On Monday morning I had the port inserted. The procedure went smoothly other than the difficulty getting an IV into my hand as I was very dehydrated – no food or water for 4 hours before the procedure, only it was closer to 6 hours by the time they began. The port was placed on the right side of my chest just below my collarbone and protrudes more than I would have liked. A plastic tube was then inserted under the skin and fed up to the lower portion of the side of my neck where it was placed into my jugular vein and runs down the inside of that vein to just above the heart. I was very sore that night and the next day from the 1 ½ inch incision on my chest and the smaller one on the side of my neck. Even so, the idea was that it could be used the next day for the beginning of this next cycle of treatment with a minimum of discomfort once the special needle accessing the port was placed in it. It all sounds so simple doesn’t it? But as I’ve learned over the past 1 ½ years, nothing ever goes right or is simple with my cancer care.

The needle used to access the port looked like a big giant tack. After three tries and with increasingly longer needles, I was in misery. They were unable to get the port to properly work. So, they got me into radiology for a fluoroscope to see what was wrong. Somehow following the procedure, the tubing managed to create a loop above the port restricting the flow of any fluids. The radiologist said they could try to manipulate it back into place first and if that was unsuccessful, they would have to go back in to fix it. They gave no indication of how it could have possibly happened and I followed all of my post-procedure instructions carefully. This will not be done until next Monday as the facility where it was done cannot get me in until then and the radiologist at the hospital said it would be best to let the wound heal some before irritating the area again. This was fine with me as I was very, very sore and bruised by that time and I wanted it to heal enough to get the steri-tape off as I was having an allergic reaction – red, itching and getting raw in some places from having to leave it on for 2 days. I do have stitches on the inside, but my incisions are sealed with derma-bond and couldn’t get wet for 2 days.

Tuesday was my first treatment day of this next cycle. I get two different chemo drugs on the first day, so I’m at the hospital longer. It was an especially long day again this time, however, with the issue of my port and they sent the wrong drug again and didn’t even have the Doxil in stock. So, I waited while they called the other hospital in town and someone went and picked it up. The first time it happened, I caught the mistake and told my nurse. At least my nurse caught it this time before it reached me. The nurses only made one unsuccessful try for an IV line and then called the ER to have them send up a nurse who was good with “difficult sticks”. He was able to get right into a vein with very little pain. They said they would continue to make sure there was someone available who was good with difficult sticks for me until the issue with the port is resolved.

Thursday night, I noticed a large bump developing right above my port, so had that checked on Friday afternoon and it is just another indication of the problem with the tubing on my port and is noticeable now that the swelling has subsided some. After this appointment, I went over to the hospital to get my treatment. My favorite nurse was there who is really good at getting access to my veins by applying a hot compress to bring up my veins and then using what’s called a “butterfly” - quick, easy, and usually pretty painless, but does require that my hand be taped down and can’t move. I was in and out of there in a little over an hour. The shortest appointment I’ve had so far.

I’m still having quite a few aches and general discomfort from the procedure, and feel a bit of tightness in my vein from the tubing. Healing has probably been impaired with all the handling of the site that has gone on this week. There are just a couple of scabs left from the allergic reaction to the steri-tape, so that problem is healing. Unfortunately, the port protrudes from under most of the clothes I wear and the location on my chest also prevents me from wearing the shoulder strap of my seat belt when I’m in the car. I’m hoping as it heals that will not continue to be an issue and I’ll be able to handle the seat belt crossing over it.

They are going to have to give me a great deal of assurance this looping problem won’t happen again after they fix it this time. If it does, I’m going to have it removed and just tough it out with the IV’s. By the time it’s fixed I’ll be half-way through treatment anyway.

As of Friday morning, we have another little crisis that we need prayer about. The hospital where I've been getting my treatment has been in financial difficulty for some time and for sale. It sold in the last few days and the new owner took over today, November 1. They fired 150 nurses Friday afternoon and who knows how many other technicians. They are still saying the hospital could possibly close, and this new company is known for canceling contracts with insurance companies and trying to break the unions. All employees have to re-apply for their positions. We've also heard that they are in such dire financial trouble that they are on a cash basis for supplies. Maybe that’s why my drugs are never there on time. Anyway, all of that to say we don’t know what’s going to happen regarding my treatment. We don’t know if the infusion center is one of the departments they might close down in order to keep some other department going. We heard they had shut down the oncology floor several weeks ago. First thing Monday morning, we have to start making phone calls to our insurance company, the hospital and to Stanford just in case I need to get the last two treatments for this cycle down there this week while everything gets sorted out. We certainly can’t afford to be surprised with a bill from the hospital because they no longer have a contract with our health insurance company.

Prayer needs for this week: 1) the hospital situation and my treatment; 2) for my procedure on Monday afternoon to try to fix the port; 3) that the Lord will make our path straight and remove these roadblocks we seem to continually encounter. As much as we look to Him in faith and trust, it is very discouraging to constantly feel things aren’t going right and not be able to concentrate on getting well; there is always something that requires time and energy to resolve.

Thank you for your continued diligence in praying for our specific needs each week. We couldn't make this journey without your involvement in our lives!