Thanks everyone who reached out to me. I know I’ve been missing in action the last couple months. I spent most of summer trying to navigate side effects from the Whole Brain Radiation and the new chemo protocol I’m on, Enhertu. Together with all the other life stuff happening, my fatigue was kicking my butt. We are slowly getting it sorted and I’m feeling a bit more normal again. At least, I have enough energy to put words to keys.
I thought I’d cover some of the side effects I’ve been having since finishing the 6-8 week recovery from radiation and starting a new chemo protocol.
Nausea not nausea
Nausea was the biggest side effect I had to navigate, not that I knew it was nausea. This was caused my the chemo. It doesn’t feel like nausea in the traditional sense of feeling like you’re going to vomit. My nausea makes me not want to eat. Either my stomach feels really full (not in the bloated sense, just an uncomfortable fullness), I just can’t stand the sight or smell of food, or I just don’t want to eat. This of course lead to me not eating and my already fatigued self getting more tired from lack of food energy. I even fainted once during bloodwork due to lack of food in my system. Not a great feeling.
The tummy pills I had been originally prescribed said they were for nausea, so I didn’t think they would do anything because I wasn’t feeling like I was going to vomit. But, of course, they did. After mentioning my “lack of eating but not vomiting” feelings to my oncologist, he said I should give the pills a try and if they didn’t do anything we’d try something else. They worked. I’m learning that nausea has a bigger definition than just vomit that includes “a distaste to eat”.
I still have days that the tummy pill doesn’t work 100%—like I can’t watch other people eating—or where I don’t need to use it—usually breakfast if I’m having something neutral like cereal—but overall it’s doing its job.
I’m just glad I can eat again and that I’m getting some energy back.
Fatigue
Woah boy the fatigue has been something else. First caused by the brain radiation, now caused by the chemo with a little bit caused by depression thrown in the mix.
I’m trying to sort the two lack-of-energy feelings I get into two categories. Tired is regular sleepiness, usually caused by physical activity during the day or just typical “bodies need sleep” tiredness. The fatigue is wariness I feel in my bones and the fogginess I get in my head. It makes it so that I don’t have much energy or clarity to do much beyond fog-scrolling on my phone or bingewatching Netflix (I can’t focus on reading or writing). This is caused by the cancer treatments (or my depression). It’s taken me a while to sort out the two different feelings, but I think it’s important for me to categorize them so that I better understand what’s going on in my body.
With getting my nausea not nausea under control, I’ve been able to decrease the fatigue which has been really good! Clear and awake brains are good. It means I can do things like write this blog post, or read books again. You sometimes forget the little joys like that when you’re so stuck in the fogginess of fatigue.
Reaching for words and short term memory loss
After the full eight weeks of recovery from the brain radiation, the effects on my brain became more noticeable. I used to be the sort of person who was sharp as a tack when it came to words and recalling information. Now I find myself grasping for words, and even tripping over other words as I try to explain the original word I was looking for Miles was looking at a fire extinguisher earlier today, and I called it a fire hydrant.
My short term memory is mostly okay, but I will sometimes find my brain glitches out immediately. I’ll have my phone open about to open an app, flip to the next screen, and suddenly I can’t remember what I was doing. Going into another room and forgetting what I was going for was something that I always did, but this is something totally different. The immediacy of it scares me sometimes—”did I just take my tummy pill?” when I’ve literally just taken it a moment before.
Most of the time these effects don’t trouble me, just frustrate me. It’s not like I’m forgetting things and scrambling for words all the time. But it’s definitely one of the side effects that emotionally bothers me the most.
Insomnia
I do get the odd burst of insomnia. Usually in the form of waking up at 5:30 am and feeling wired and fully awake. I’ve been on a sleeping pill for ages thanks to my anxiety, so I don’t usually feel it at night. This delightful morning insomnia is being caused by the steroid, since I would get it A LOT when I was on the steroid for the radiation for four weeks (Now I only need a few pills after chemo treatment).
At least it gives me some energy and clearheadedness; if only it didn’t cause tiredness, too, from being up so early.
Hair loss

My hair is starting to grow back, but it’s definitely not what most folks would consider growing back. I am bald with a few sprouts growing here and there. This is a combo of the radiation and chemo. You can see on the back of my head where the radiation stopped, because I have this (thinly) growing mullet at the back.
And that’s my experiences so far! I’m feeling so much better now that I have been eating again, so I’m hoping I can get back to more writing.
Enjoying my writing? Ways to support me.