Chemo steroids are keeping me awake in the middle of the night, so what the hell? Let’s try to write an update. 😆 I have my OmmWriter music on in the background via YouTube Music. Anyone familiar with OmmWriter? It’s a distraction-free writing program I used a bunch back in the day.
Steroids
Anyway, yes. Let’s start with the steroids. I’m taking steroids (dexamethasone) twice a day on the day before chemo infusion, the day of and the day after. I’ve now learned that steroids make me hyper. As someone with multiple energy-limiting chronic illnesses, it’s been a very strange experience.
After my first dose, which was the morning of the day before chemo infusion, I had so much energy. I worked, went to a dentist appointment and had a visit from my parents — and never crashed from the energy output. For those of you familiar with the Visible tracker I use to manage my energy output, I used 37 PacePoints. That’s more than double a usual big day for me. I think if steroids weren’t so terrible for us, they could really do something for these illnesses.
After my second dose, which was the night before chemo infusion, the steroids kept me awake almost all night. I slept for 1 hour 45 minutes in the wee hours. After my third dose, the morning of infusion, they kept me wide awake and hyper all day long. I tried to counteract the hyperactivity of the steroids with a dose of cannabis but it had barely any effect. Being so underslept, I decided to try to balance the steroid sleeplessness with some Ativan that night for my fourth dose, as instructed by my medical oncologist’s office. That actually worked really well! I slept all night, aside from a few usual pee breaks.
My fifth dose, which was the morning after chemo infusion, actually did very little for me in the way of energy because by that time, the chemo fatigue had started to set in. As such, I was so tired when I went to bed, it didn’t occur to me to take an Ativan with my sixth dose to combat the steroid sleeplessness. That was last night and here I am — writing a blog post while wide awake in the wee hours. I’m actually really grateful that was my last dose of steroids for this round of chemo. Sleep is where it’s at. Though I’ll miss the daytime energy.
Power Port
Before we get into the actual infusion, let’s take a look at how my Bard Power Port is healing. It’s gotten so much better now that we’re a week out from placement surgery. It’s healing much more quickly than my lumpectomy.
Chemo Infusion Day
My first chemo infusion day was actually so much easier than I anticipated. I don’t expect that to be the case for future rounds, but I was grateful for being able to ease into it a little on the first day.
The entire procedure only took three hours, which was much shorter than I thought it would be. I really overpacked, expecting to be there the whole day. My husband sweetly lugged my very full duffel bag to and from chemo for me. He also sat in the chair next to me through the whole thing. ❤️
The appointment began with vitals (weight, blood pressure and oxygen saturation) and the nurse explaining to me how to numb my port at home. I had been instructed not to do it myself the first time (though I’d researched and knew how to do it already) and once the nurse explained the procedure to me, she said we didn’t have to worry about numbing it that day because it doesn’t really hurt much. I was skeptical but trusted her. She had me turn my head away from the port in order to align it well within my body and then she attached the needle.
And the nurse was right! It didn’t hurt me very much at all. I’m considering not bothering with the numbing in the future but it feels a little bit wasteful. I did buy an entire roll of Glad Press ‘n Seal just for a few small pieces to cover the numbing cream. 😆
Once the port access was in place, the line was flushed with saline. If this whole cancer thing has taught me anything, it’s that I can taste saline when I receive it intravenously. I learned that at my breast MRI and it was confirmed during infusion. Can y’all taste intravenous saline?
Then began premeds. I believe the only one I received was palonosetron, which is an anti-nausea and antiemetic drug. Its effects apparently last for 3-5 days in the body.
The first chemotherapy medication I received was docetaxel (Taxotere). They started it at a slower pace for the first 20 minutes in order to watch for undesirable reactions. And, indeed, I did have a mild allergic reaction in the form of skin flushing. However, my nurse sorted me out promptly. Chemo nurses know what’s up! We stopped the drug and she gave me intravenous famotidine (Pepcid), which is something I already take multiple times a day for suspected Mast Cell Activation Syndrome (MCAS).
Before long, the flushing reduced and the nurse gave me another cautious 20 minutes of docetaxel. That went well, so she bumped me up to a medium speed for 10 minutes. That also went well, so I was able to do the rest at full speed.
At that point, the nurse also gave me ice packs for my finger tips and toes. The idea is that the ice will help keep the docetaxel from reaching my extremities, in order to hopefully reduce the probability of increasing the neuropathy I already have from my chronic illnesses. I also had compression gloves and socks with me because I read that can also help with the docetaxel neuropathy situation and I had no issues wearing them with the ice packs.
Speaking of chronic illnesses, it turns out my nurse’s daughter also has POTS. I was grateful because it helped me feel less embarrassed about having to pee so much! She understood about my endless efforts to hydrate. 😆
And speaking of going to the bathroom while receiving chemo, I was relieved to discover you can unplug your infusion machine because it has a battery. And then you just roll your IV pole with you to the bathroom. So it’s really not that big a deal. As someone who pees a lot, it was a concern for me, so I thought I’d share for any other POTSies who might be similarly worried.
After the docetaxel, I received my second chemo drug, which is cyclophosphamide (Cytoxan). That drug doesn’t come with neuropathy concerns, so I was able to remove the ice packs and compression. It was also quicker than the docetaxel and gave me no immediate side effects, so it felt pretty easy.
Once my infusions were over, we packed up, I confirmed my next appointments and we went home.
Side Effects
So far, my side effects are taking some time to ramp up and have been mild overall.
A little while after returning home from my chemo infusion, I had a bit of a headache and started to get nauseous. I have prescription medications for chemo nausea but I wasn’t sure if I could take them. I read online that it’s best to wait for 3-5 days until the intravenous palonosetron premed wears off before taking the at-home meds because they’re so similar. So, I did my best with bland foods and meds I was already taking, as well as anti-nausea candies and essential oil sniffers.
Yesterday, the day after chemo infusion, my skin was really flushed. I don’t think the photo below really captures it. Face, neck, chest, arms, legs. My skin was so hot. It felt kind of like sunburn. No fever, though.
I also felt achy like when you have the flu. I still had some nausea but I was able to take my at-home meds after confirming with the chemo nurses that it was okay to do so before the palonosetron wears off. I also had a headache, my mouth felt raw and I had so much extra fatigue. I used some Prevention mouthwash a couple times for my mouth soreness and it seemed to help. I also took a couple naps.
My side effects are still pretty mild but they’re getting to be more bothersome. I anticipate them continuing to get worse over the next several days.
Next Day Injection
After each chemo infusion day, we have to go back to the medical oncologist’s office to get my Nyvepria shot (which is a biosimilar to the more well known Neulasta), so we did that yesterday. The shot is to boost my white blood cell count, but it apparently ends up making stuff that takes up too much space inside your bones, causing bone pain. I’m not looking forward to that happening in the next day or two. I am, however, taking Claritin for it, as instructed by my chemo team. So begins the game of taking meds to counteract the side effects of the meds that counteract the side effects of chemo. 😂
That’s all for now, friends! I’ll do my best to keep you updated about my side effects as they continue to develop. Thank you for reading! ❤️