Hello out there. So yesterday my double digit chemo experience was pretty rough. Warning/Disclaimer: This post contains ranting and TMI (too much information) so please be warned.
The day started off quite well. Overall waiting time was much less and I got into my chair at 11:30am instead of the often 1pm after waiting 2 hours for bloodwork/registration, etc. They told me my nurse would be Anna who I knew sounded familiar but as we walked back a nurse named Diane I had never met came to greet me and told me she would be taking me since Anna already had two patients and she only had one. From the moment we got to the chair, I noticed there was something off about her in the way she reacted to me telling her that I have been having trouble with my veins lately and that depending on the results of my upcoming scan I would be getting a port put in. She kinda rolled her eyes a bit and seemed dismissive. I would say something to her and she just wouldn’t respond. So we got started and she was able to get an IV in on my left wrist. I wasn’t crazy about that spot because its a sensitive area but I was relieved that it went in easy. But during the pre-meds (which take over an hour) it started to get irritated not just at the infusion point but further up my arm. This happened on the right side too and later caused phlebitis (inflammation of the vein) so I was starting to worry but waiting a little more to see if it would pass. But when she started to infuse Benadryl, which often causes extra burning, I broke into a rash and dark spots were showing up on my arm where I felt the sensitivity. She kept testing the blood return on the IV saying “it’s working fine” but eventually accepted that the site was not not good. So she called in one of my favorite nurses Jennifer to try another spot. That spot turned out to be sensitive so another nurse named Jennifer that usually works inpatient tried out a different spot on my left wrist next to the first failed spot. I have no idea what happened but as she put the needle in a sharp, shooting pain ran up my hand to the tip of my middle finger and I screamed in shock. I had never felt anything like it before in my life. So that point wasn’t going to work because when you tense up like I did from the pain, the vein “blows,” whatever that means! So things were not looking so good but a previous treatment day we had to try 5 spots before we found a good one so I wasn’t anywhere ready to give up. One of the Jennifer’s noticed that my AC line (which is the one in the crease of your arm where they draw blood) looked really good but they don’t typically do chemo infusions there and some nurses refuse to do so. Plus one of my drugs, Taxol, is especially sensitive on your veins so they rarely use that line for that drug. At this point Diane was telling me how I had to give up and go home. She kept saying how I had to have a port put in and how it wouldn’t “be in my best interest” to continue to try more veins. Excuse me? Not in my best interest? Is she my doctor? Does she even know my diagnosis or my history? I am fighting for my life here so I think getting this chemotherapy infusion is certainly in my best interest! Plus, my scan is next week so there was no way I wanted to delay that. So I insisted that she talk to my doctor and let him make the call. Somewhere in the midst of all this chaos, I asked my mom to talk to a supervisor and transfer me to a new nurse. Diane was not only negative but passive aggressive too. At one point during all of this, I was trying to relax so the nurses could get the IV in and she was playing this terrible pop music at her desk which was right next to my chair. My mom asked her if she could turn it down because I was trying to relax and she just ignored us. So the other nurse Anna turned it off and a few minutes later, Diane turned it back on and made it louder! How does this woman possibly work with cancer patients? Has she lost her mind? Also! Right after my third scary IV point that sent that pain shooting up my finger, the woman in the cubby next to me started having an allergic reaction to Taxol (it was her first infusion ever) and started screaming and moaning that she couldn’t breath and was having back pain. It was so scary! All the nurses attended to her immediately and gave her more Benadryl and she got better but it didn’t help me relax! I just kept taking deep breaths to stay afloat. My mom then returned with this other nurse who told me that this nurse Julie (who I had IV luck with before) had a chair for me on the other side so I could move there. But on the way, I passed by my favorite nurse Jennifer who answered the call from my doctor who said he wanted me to get the infusion and approved the use of the AC line and she told me to stay with her because she had a chair for me. So everything turned out OK in the end. The AC line was super easy and I felt no pain or discomfort. The only problem with the AC line is that you have to keep your arm straight the whole time so the drugs don’t get stuck in the line if it bends. So that whole arm was out of commission. And my left arm was so sore from all the failed IV attempts that I couldn’t bend my wrist without pain. So I had no free hands for the day! Here comes the real TMI part: my mom not only had to come to the bathroom with me (she usually does anyway when I get drowsy from the Benadryl) but she had to pull my pants down for me and you can figure out the rest. She also had to feed me my lunch of pureed broccoli soup like a 1 year old child. What would I do without my mom? Those moments made me feel grateful for the things I do have including the use of my hands and my loving and supportive family. The woman who was having the allergic reaction was all alone and that made me sad. I think her son was there earlier but had left. Oy vey! Have I exhausted you yet? I warned you this would be ranting, long and TMI. So I am going to file a formal complaint about Diane not out of spite but because I don’t want anyone else out there to go through what I did. I feel good about standing up for myself but I shouldn’t have to do this at the chemotherapy suite. I know this may seem like a stretch but it sort of felt but Diane telling me to give up on the infusion felt equivalent to her telling me to give up my fight against cancer. So despite the negative experience, I gained confidence in myself that I really am a fighter and that I can win this battle if I stay positive and not let any negative person get in my way. As in the lyrics of good ol’ Tom Petty, I won’t back down.
So I’d like to end on a fun positive note! Here’s a picture from when Steve and I were FaceTiming the other night.
Where else would I want to be but snuggled up with my stuffed animals. I’d like Steve to be there too instead of in the virtual box on the top right. But soon enough! He arrives for a week from tomorrow and he’ll be here for a whole week! Woohooo! Ok, I hope you all enjoy your weekend. xoxo Lauren