I was diagnosed Stage IV de novo with Inflammatory Breast Cancer in September 2017, and I immediately started chemo. Initially my veins were very easy to access, but after a few months the oncology nurse who had been accessing my veins since Day One told me that my veins were becoming unusable and I could no longer put off getting a port. We made sure I got a Bard Power Port so it could also be used to inject contrast media for scans. Accessing a port requires specialized training and equipment, and not everyone can do it.
Like most people with metastatic cancer, I am no stranger to scans. I’ve had them all multiple times on a regular basis – bone scans, CT scans, full-body MRI, breast MRI, and PET/CT scans. My oncologist’s office always makes sure to inform the imaging center that someone will be needed to access my port, and without fail I am always told when I arrive that either there is no one qualified to access it, or more often that it won’t be necessary because the person is so good at what they do that they are sure it won’t be a problem. Whether it’s a stand-alone imaging center or one inside a hospital, the story is always the same. Everyone always thinks they are the best at accessing veins, and that they won’t have the problems that everyone else has. My oncology nurse always offers to access my port before I head over to imaging, but imaging centers tell me that they still aren’t allowed to use the line.
Chemo is hard on veins, and I’ve been on chemo multiple times since my diagnosis. Herceptin is also very hard on veins, and I’ve been on Herceptin since the beginning. Over time my veins were becoming more and more difficult; it was taking longer for people to find a usable vein, often as long as 20 minutes even for people who had been sticking me since Day One. When they do finally find a vein they think they can use, they often blow the vein, leaving me bruised from my elbow to my fingers as they try multiple places. Like most breast cancer patients, only one of my arms can be used, which cuts our options in half. Although many people with metastatic breast cancer suffer from “scanxiety”. I have no anxiety about the scans themselves, it is the every-increasing amount of time spent trying to find a usable vein, the painful lumps and bruises, and the added stress it causes both me and the person trying to access my veins, that has caused me to now dread scans. What used to be a very simple process is now fraught with tension, stress, and pain.
I recently had symptoms that caused my oncologist to order a “stat” brain MRI. Because there was a rush, I was scheduled the next day at the first place that could fit me in, a hospital I had never visited before. My oncology nurse made sure to submit the paperwork to have someone access my port. She also offered to leave my line in “just in case” since my infusion was Monday and the scan was Tuesday, but I was afraid that I would rip it out overnight since I am a restless sleeper.
When I checked in for the MRI, I confirmed that they were aware that we’d need someone to access my port. The tech waved the form in front of my face “You mean this? We won’t need it because we use a very tiny butterfly needle and I’m very good at accessing veins. We won’t have a problem.” Here we go again, I thought to myself, but since every other time I’ve had an MRI they have set up an IV line before I’m rolled into the tube, I figured this won’t be any worse than the dozens of other times I’ve suffered through. Was I wrong!
If you’ve never had a brain MRI before, they put a cage/mask (called a coil) over your face. I don’t have a problem with claustrophobia inside the tube, I meditate, but having a mask over your face does take it to another level. Instead of setting up an IV line first, the mask was put on my face and I was rolled into the tube before I knew what was happening. It took fifteen minutes to do the first set of scans without contrast. The tech rolled me out and intended to inject the contrast directly into my vein. I told him that lately we’ve had the best (and only) luck with my hand, but he didn’t listen. I still had earplugs and the mask over my face, and he warned me that I absolutely must not move my head.
He tied the tourniquet close to my elbow, handed me a rubber ball to squeeze, and stuck the needle into my upper forearm. He didn’t hit the vein and began wiggling the needle around, which is incredibly painful. After what felt like an eternity, he finally gave up on that one and I told him it was just in time because I felt like the needle was going to come through the other side of my arm.
He moved the tourniquet further down my arm and started tapping and poking. Still no luck, so he brought out the warm compress. More tapping and poking, still no luck. He moved the tourniquet even further down my arm, and still no luck. Meanwhile I am trying to crack jokes to relieve my stress because I still have a mask over my face and earplugs in my ears and I was told that I absolutely must not move despite the fact that he is causing me pain and stress. I felt like I was being tortured, and what I really wanted to do was scream at the top of my lungs to get the d*mn mask off my face!
After 15 minutes he finally gave up and left to call a nurse to access my port, leaving me lying there still with the mask on and completely stressed out. Before the nurse arrived, he decided to poke around some more. After another 10 minutes of moving the tourniquet and poking around, moving the tourniquet and poking, while I’m still wearing the mask and not allowed to move, he finally moved to my hand (did I not tell him to start there?). He commented that my skin (or maybe my hand) is thin, and doesn’t it hurt? I replied that yes it hurts, but it’s been our only option. After wavering back and forth between two different locations on my hand, he finally got a vein just as the nurse arrived. He had to slow-walk the injection because the vein was so tiny, then he rolled me back in for the next set of scans. My MRI went 30 minutes longer than scheduled, and I was wearing ear plugs and a mask over my face while being stressed and tortured the entire time.
Never again my friends. I don’t care how mean I have to be about it, I will never again allow myself to be put through that experience. If I ever again need a brain MRI and they refuse to have a nurse to access my port, I will insist that they at least set up an IV line BEFORE they put that d*mn mask over my face.
Ironically, after I shared this story on social media I received a response from someone who thought she was better than every other person who had ever tried to access my veins. She chimed in with tips and tricks, the same ones that everyone else uses to no avail, and implied that no one else knew what they were doing. I’m metastatic, I have had literally dozens of people struggle to access my veins, including several who were able to access my veins without a problem in the beginning. I wanted to tell her that SHE was a perfect example of the problem because she thinks she knows better than everyone else – the patient, the patient’s doctor, and everyone else who has tried to access the patient’s veins. You should not let your ego get in the way of caring for a patient. The experience I went through with my brain MRI was inexcusable. When an individual with metastatic cancer, or more importantly, the person’s doctor, tells you that the port must be used because the patient’s veins are shot from chemo, you need to trust that the veins are shot.