Looking back, I can see how I got to this point. I've had trouble getting blood taken for about forty years. I can remember one of the reasons I left Kaiser was because the phlebotomist poked me five times before he could get blood. Of course, he was intent on succeeding, and so moved the needle around each time to be sure and injure surrounding tissue, and leave me with black and blue arms and hands. No, I was not pleased.
After that and other episodes, I became very wary when it was time to have blood drawn. My request was always for a butterfly needle in the hopes that would help. I would warn the phlebotomists that my veins were hard to find and moved around a lot, and if they weren't assholes, they would thank me for the information and go about their business. (Yes, one guy told me never to say anything like that to the person who is going to take the blood. He explained how wonderful he was at getting the vein right away. He did manage to succeed in a one-stick success at first, but he had forgotten to get enough and had trouble with the second needle. So much for that.)
This was my normal method until I was hit with my first cancer diagnosis in January, 2009. I had to have six weeks of chemotherapy and I so did not want to have a port. My doctor said I could try without one and see how it went... (Follow me below the squiggle to hear the rest of this sorry tale.)
Off I went to the appointment for my first chemotherapy session. I was kind. I warned the nurses. They came with some hot compresses to see if that would help. Nurse 1 made the effort, but didn't succeed. (They now follow the "two sticks and you're out" rule, so after two failures, the next one tries.) Nurse 2 tried as well. Nurse 3 was finally successful, and that started the "back of the hand" approach to chemotherapy. I was wobbling a bit on my anti-port resolve, but the next session was a one-stick success, and it followed back and forth like that until all the sessions were completed. There was, of course, also the time I needed a blood test and the nurse ended up finding a vein on the side of my wrist, which was the first time in that location.
Moving right along, I went through the proper waiting period so that the chemo and radiation could finish working their magic, and then I had a PET scan. Of course, the PET scan also requires an injection into a vein, and of course I had the usual problem there, although in the end it was successful. The backs of my hands, however, were already pretty chewed up because of the previous chemo.
I got the good news (cancer had disappeared from the original spot) and bad news (it had moved somewhere else) in January, 2010, forever enshrined in my first "real" diary My Cancer Came Back. It was time for another round of chemo and radiation, and I knew, sadly, that I was going to have to get a port. And so I did.
I had a Powerport implanted. It is visible under the skin. This particular port can be used for chemo, drawing blood, and also for doing PET scans. That was one of the reasons I wanted it, so I could have the PET scan after the treatments. I didn't realize at the time that there was probably something wrong with my port. Here is something I wrote in another diary about chemo and radiation.
I must tell you, however, that sometimes even with the port, my veins don't want to give up any blood. Even after accessing a vein through the port, sometimes the nurses have difficulty seeing a blood draw which they need in order to proceed. They usually ask me to take a deep breath to see if that helps. The last time the deep breaths weren't working so well, so the nurse suggested standing up. Then she suggested moving my head from side to side. Finally, she told me to lift and wiggle my arms. So here I am in the chemo area, taking deep breaths, waving and wiggling my arms and moving my head from side to side and it worked! And the nurse told me I looked like I was doing a prayer dance to the blood gods. (I will do that dance every time if I have to!)
What I didn't know at the time, was that my port was on the way to breaking. I finished the initial six chemo treatments, and then I was supposed to wait a couple months and have a little more. In the meantime, to keep the port open and without clots, you have to go in and have it "flushed." They first put in some saline solution, and then some heparin, which prevents clotting. On one of those visits, they needed to get some blood too, but they couldn't get the saline solution in. They decided I should have the port checked out to see if it was still working. In the meantime, they thought they would take the blood out the regular way--Hah! were they wrong. They couldn't find a vein and gave up.
I made an appointment, had my port checked, found out it was defective, and talked to my doctor. He suggested I could get a PICC line instead since I only had a couple more sessions. However, I was thinking of the next PET scan too, and the PICC line didn't sound very appetizing either, so I made an appointment to have the first port removed and another put in, and got it all taken care of before the next blood draw. Yes, I needed an IV for the removal and placement of the ports. The first nurse was unsuccessful, but the anesthesiologist just used a wrist vein, which is more painful, but what are you going to do?
This port worked great from the very beginning. No more prayer dances to the blood gods (not so far, anyway!). I had the last two sessions, did the port flush every four to six weeks, and went to the PET scan last December. I had heard that the place that does the scan doesn't like to use ports, so I made arrangements to stop first at my chemo doctor's place and have the nurses put in an IV, and then made an appointment to have it taken out after I was finished with the scan. I phoned the place several times, telling them what I was going to do, and they had no problem with it...until I appeared on the appointed day, IV line ready, only to be told they didn't use ports! I was livid, and told them I had asked repeatedly and was told it was no problem. They made me wait a long time, but eventually they got clearance from the doctor in charge, and used the port for the scan (which turned out to be negative, which was a good thing).
That brings me to last month, when I had to get another PET scan. I had my doctor write that I was going to use a port on the paper to take with me. I had the doctor's office make the appointment, and tell them I was going to use a port. I checked with them on the phone as well. Sure enough, after I got the needle placed and appeared at their office, the same person that had made me wait so long for approval said they don't use ports. I told her that I had had one the previous time. She looked at the records and said I was wrong; they had inserted the needle there. I told her she was wrong, and that I had kept the port specifically for this test. She said I could look at her records if I wanted. Then she said she would see if they might be able to use it. I said "No, you will use it." And she got permission again and did it. After the test was finished, I asked her to check her records again. That's when she found out that I had been right.
I was very relieved to find out last week that the test was negative again. My doctor asked me what I wanted to do about the port, since I will need another test in six months. I told him I would rather just keep it and come in to have it flushed every six weeks, so that is what I'm doing. It's sort of like a good luck charm by now. I'm afraid if I have it taken out, I'll just have to start all over. Maybe after another negative scan (I hope!) I'll start to believe it.