If you’re going to have chemotherapy, someone should ask you to consider having a port. The port is a round, dome-like device implanted somewhere near your collarbone. It gives nurses a reliable place to stick all their needles. It’s attached to a catheter that runs under your skin and into one of your veins, providing more direct and easier access to your circulatory system than the veins in your arm. And it’s a much better and less painful way to receive chemotherapy and give blood for tests. It looks like a little round bump under your skin. It’s definitely kind of a creepy Frankenstein thing, but totally worth it. Ports are usually implanted on the left side (although occasionally it’s necessary to have one on the right), and they require a surgical procedure. Ask your surgeon if you can have it implanted during your mastectomy so you don’t have to have an additional procedure. It’s barely noticeable. I’d had mine for over a year before my son pointed at it when I was wearing a t-shirt and said, “Mom, what IS that thing?” I said, “That’s my port.” He responded, “It looks like some alien implanted it.” Yup, but for over a year he hadn’t even noticed I’d been abducted by aliens.
Normally it doesn’t hurt to have a port, but occasionally it does. The skin over the port itself can be sensitive, especially after a blood draw or chemotherapy; and once in a while you might feel some pain at the point where the catheter runs under your skin near your neck. It goes away quickly, but I do occasionally become aware of discomfort there. Also, avoid direct impact on the port. Touching it is just plain weird because it’s definitely a foreign body, but you get used to it.
The doctors sent me home with a little booklet and packet about my port, but didn’t tell me much else. It turns out that each port has a number that lets the hospital staff know whether it’s a power port or not (which determines the kinds of things they can use it for), and you need to have that information with you. There’s a little ID card in the packet that you should put in your wallet and carry around. I wish they’d mentioned that to me in the beginning, because the first time I went to have it accessed, the nurse asked me if it was a power port, and where my ID card was. Huh? Now it’s in my wallet at all times.
ACCESSING THE PORT/LAB-WORK
In my hospital, and in many others, the oncology wing is its own universe. There’s a special room where the nurses do blood work and other procedures for cancer patients, and it uses the same waiting room as the oncologists. This is where you look around the room at the women wearing wigs and hats and looking well and not so well. You begin to see the same people week after week as you go through your process. It is here that things are both depressing and encouraging. There are always stories to be heard about long illnesses and ongoing treatments. Be careful where you sit. This is the place where you hear the good and the bad, and realize you are one of the ugly. I still hate walking into that area. It’s hard to believe I belong there.
When you go to the lab for tests and need your port accessed, the technician will probably ask you if you want a numbing shot first. Before I knew better, I said, “Absolutely.” I mean, who wouldn’t want a numbing shot, right? Sign me up! What else can I numb? The thing is, the shot itself was more painful than accessing the port without it. It’s two needle sticks instead of one. And the lidocaine itself stings like crazy when it’s pushed in with a needle. I think they have to offer it, but I’m a pain wimp and even I said “no” the second time around. When I hear someone say yes, I always want to lean over and say, “Just say no.” I assume this would be considered bad manners. There is a lidocaine cream your doctor can prescribe called Emla cream. You apply it to the port about 90 minutes before your appointment, and voila - numb. Spread the joy.
To access your port, the technician takes a needle attached to a bit of plastic tubing, punctures the port, and then checks for blood return. To do this, she attaches a syringe to the tubing, squeezes in some saline solution, then pulls the plunger back to see if blood enters the syringe (a good thing). Then she takes a few vials of blood for tests and sends you on your way. If you’re having other work done, she leaves the tubing in and tapes it to your chest. Then, for the rest of the day, all anyone has to do is attach the lines to the tubing that’s already there. When you’re done, they just pull the needle out. It’s kind of weird because it reminds me of pulling a plunger out. It doesn’t hurt, it just makes a clicking sound and there isn’t really a tugging sensation, but it feels like there should be. That part you barely feel at all.
PORT WHINES (Sorry - my husband’s pun)
Sometimes the darn thing just won’t work. The port can get some kind of enzyme build-up on the inside, or get too close to the wall of the vein or something, and when they pull back on the plunger, nothing happens – no blood appears, which means they haven’t achieved access. I have a theory that it happens more often when I’m dehydrated, but sometimes it just happens. Also, it's harder to access veins or your port when you're cold. Then the fun starts. The nurse will practically have you doing calisthenics, hands up, down, lie on this side, roll over, stand up, sit down. FIGHT! FIGHT! FIGHT! If nothing else works, she can inject you with an enzyme that removes the buildup, and after about 30-45 minutes, she tries again and you’ll probably be good to go. In the meantime, there’s a lot of suction and pressure on that port, so don’t be surprised if you’re a little sore after one of these episodes. It’s kind of upsetting, only because whenever something varies from the norm, it’s unsettling. But it’s not a big deal; just go with it.
1. Don’t be afraid to be high maintenance in the lab. Little things can make a huge difference in making you more comfortable during a very uncomfortable experience. Most of the time, the nurses are wonderful and happy to be accommodating. If you come across one who is not - ask politely for someone else. In some labs, you can request a certain nurse each time. Tell the nurse ahead of time if you have very sensitive skin. There are hypoallergenic bandages and tapes they can use if you mention it. Also, the Betadine scrubbing pad that they often use can irritate your skin, so I just ask them not to use the scrubby thing. Another tip: if they don’t wait until the skin protectant dries before putting on a bandage, it can be really itchy, so make sure the nurse waits for it to dry. All adhesives can be irritating if they’re put on the skin too quickly. Don’t let the nurse just peel off the backing and slap it on you; make sure the air gets to it for a few seconds first.
2. Before you go to have your port accessed for anything, have your doctor give you a prescription for Emla cream. It’s a numbing cream and it’s fantastic. Make sure you slather a thick layer on your port about an hour and half before your procedure. Ask the pharmacy if they have any extra Tegaderm (or any other brand) of patches to put over the area while the cream is on. If they don’t, just take a piece of plastic wrap and some surgical tape and cover the area. You want to leave a big blob of white cream over that spot and make sure it’s on for at least an hour. Then, when they insert the needle, you will not feel any pain. I swear. Pressure, but no pain at all. Awesome.
3. It pays to make nice to the lab nurses. They know all the good tricks and are a wealth of knowledge. If you get the same one most times, you can establish a routine. She’ll know all the subtleties of your situation and what works for you. It helps to make these personal connections.
4. Check your shirt before you walk out of the lab. I got so blasé about the whole thing, I started to walk out into the waiting room with my shirt open half the time. Seriously, I mean after six months of unbuttoning my shirt for anyone who asked, who cares? Nothing to see here. Literally.
5. If you’re squeamish about needles and things, number one, I feel badly for you because the world you’ve now entered is filled with them. Number two, bring sunglasses and put them on when the needles come out. It’s easier than trying not to look.
OK, I know this is a “TOP 6:” This is truly odd, but you can sometimes taste the saline solution they use to flush the port. And, even odder - it doesn’t taste like salt water; it tastes metallic. It’s incomprehensible to me, because the saline is going directly into the port, nowhere near my mouth. The good news is that you don’t taste the chemo drugs or anything else. I asked why, and nobody had an answer. Bring a mint or a Tic Tac and pop it in at the right time.
There are all sorts of things that people can be sensitive to - from the adhesives used to secure the tubing to the cleansing and sterilizing products. I found out that I was sensitive to pre-drawn saline solution from one distributor, so for a while they had to draw mine individually. I experienced a little stinging from it and mentioned to the nurse that I could feel it, and she switched and it made a huge difference. Not every nurse will mention your options, but some will. The trick is to mention everything you’re feeling. Don’t assume that things are supposed to sting or hurt or itch just because you’re in a hospital getting treatment. Often, the nurses know of something that will make things a little easier. Let’s be clear, the whole thing sucks and there’s lots of pain and discomfort along the way, but that’s why little things can make such a big difference. Especially when it comes down to the nurses and your level of comfort with them. Everybody’s different, so ask for the people you trust and refuse the people you don’t. Nobody should ever make you feel guilty about it. You won’t be the only one who has done this (I did).
The thing about lab work is that, as unpleasant as it is, it’s important. They’re checking your blood levels to make sure you’re ok to have treatment, so you have to go through it a lot. Each time is stressful because you’re back in the oncology department, and any time you’re anywhere near that place, you’re going to feel some anxiety. Add needles and flushes and treatments to that, and it’s quite a package. Can’t be helped. Remember that “new normal” everyone keeps talking about? This is part of it.