Chemo Brain Revisited

Today I realized the importance of the after c part of this blog. I thought all the important stuff was in all the during posts. I couldn’t have been more wrong.

I worked this morning, then made lunch before I had to go to an appointment with my oncologist. As I was putting my sandwich together, my phone started to ring. It was one of the universities I requested information from, and I wasn’t going to answer. I wanted to eat my lunch in peace. But I hadn’t picked up the last couple times (because they always called me when I was at work), and I really wanted to talk to them, so I picked up.

So I answered, and we talked about the program I was interested in. I talked about my goals with finishing my masters, including my thesis and graduate certificate, and then my plans of taking the BCBA certification exam. I mentioned how I wanted to take next summer to focus on studying for the certification exam, and didn’t want to start any new education programs until the fall, at the very earliest, assuming I pass the certification exam on the first try.

I told the guy about how I was apprehensive about the certification exam because I still struggle to read and retain information due to chemo brain. That tiny little statement changed the entire course of our conversation. It turned out, the guy I was talking to is also a cancer survivor. He told me that he knew exactly what I meant about the chemo brain, and told me that he talked to his oncologist about it when he experienced it, and his oncologist made recommendations that assisted him in overcoming it. I won’t mention what his oncologist’s recommendations were, both because he had a totally different cancer and the actual treatment was irrelevant. The point is that just because my cancer is gone doesn’t mean there aren’t still going to be things that I should consult with my oncologist for.

I thought chemo brain was just something I was going to have to live with. I play games, try to read, and otherwise keep my brain engaged as often as I possibly can. I thought that would help exercise my brain back into shape. I didn’t know they were other options. Now I do.

And I think it’s important to share this information because other people might feel the same way. They may finish their treatment and think that there’s nothing else they need to do, or that there’s nothing else they can do, because the cancer is over. That’s simply not true. And these are things I may not have even considered if I hadn’t picked up the phone.

So at my appointment today I talked about two things. One thing was the chemo brain, for which he referred me to a neurologist. Dr. YB said the neurologist might have different activities and exercises for me to do to help alleviate the symptoms of the chemo brain. The second thing is the aching in my toes, feet, ankles, and knees. Whenever I get up after sitting for a while, I struggle to get moving and am so sore in those areas. Dr. YB knew exactly what I was talking about and said it was a side effect of the hormone blocker. He advised me to stay off it for two weeks, then resume for two weeks, and see how I feel. If it is the hormone blocker, then we may switch to Tamoxifen. So I’ll report back on that.

We talked about some other things, and I’ll share more about that in another post!

Random Additions

There are a few random things I thought of that I’m not sure if I ever shared…when I started this blog I vowed to myself to include it all so that maybe one day it might be helpful to someone looking for a real account of what breast cancer was like for someone.

Fingernails – I did not lose my fingernails or toenails. My oncologist said it was a possibility; it was one of the things he brought up while I was super-focused on food. Anyway, I didn’t lose them (although I think I am about to lose the toenail off my big toe), but I did have weak spots that have just grown out. They were deep ridges in my nail that started at the cuticle and as the nail grew, eventually moved their way up, and promptly broke when they reached the tip. They’ve all reached their breaking point, so my nails are currently a mess.

I think the toenail thing is mostly unrelated to treatment. My toenails have been totally fine and haven’t had that same ridge in them like the fingernails. I ended up with a black and blue spot on the side of my toenail. I can’t remember bumping it or anything, but I can’t remember much so I can’t discount it. I still have some neuropathy in my toes, so I could have easily not felt whatever hit it, if something hit it. Anyway, today there was a little blood along the edge, so I think the nail is going to come off. I think my exercising is aggravating it, being on the tips of my toes for planks and whatnot. I’ll keep you posted on The Toenail Saga. You’re welcome.

I Gotta Pee – Another (thankfully short-lived) effect was having to pee the moment I thought about having to pee. Let me explain…(again, you’re welcome)…there were times near the end of chemo where if I felt the urge to pee and thought about it too much before I made it to the bathroom, I would nearly pee myself. Totally random, I know. I’m happy to say that’s no longer a problem.

Chemo Brain – I still have chemo brain. It’s not as bad as it was, but I’m still a little spacey here and there, and have trouble focusing and recalling information. I haven’t gotten very specific about what chemo brain affects, so I’ll do my best here. My long-term memory seems pretty unaffected, but I have trouble recalling more recent things. For example, it may take me some time to recall what happened yesterday, but I have no trouble recalling something that happened two years ago. The ability to concentrate is kind of related to staying in the moment. Like I’ll be reading a book, and just zone out. It was really bad during chemo and made classwork super hard. I’d read the text book and, not only have a hard time focusing, but also forget what I’d read.

So those are a few things I don’t think I delved into previously. If I think of anything else, I’ll add it.

The Crappiness Has Set In

I’ve struggled this week, mornings in particular. Sore throat, low grade fever, stuffy nose, runny nose, stomach issues…it’s almost over.

Almost. Over.

This is the beginning of hell week for me, and it’ll last about another week. Then I have one more cycle of chemo and it’s all over.

There will be other issues then, I’m sure. Surgery, recovery, etc.

I feel like those problems will be nothing though, compared to all this chemo sick.

I got satin sheets. My chemo nurse this week suggested trying them for the hot flashes since they tend to be cooler than cotton sheets. I’m laying on top of them, having a hot flash, so we’ll see about that.

Something funny I remembered about chemo day this week…I sat next to a nice lady who also has breast cancer, hers is triple negative. We claimed the space between us as a neutral zone. Anyway, moments after we introduced ourselves, like less than two minutes, I forgot her name, and she was calling me Amy.

It was kind of a relief to actually experience a fellow chemo brain.

Duh… (& hot flashes)

I spent a few minutes today looking for my phone that was in my hand. I was at chemo, and wanted to post something snarky, but by the time I found my phone (smh), I forgot what I wanted to say. So I figured I’d just say: “Hey! Today is my second to last chemo treatment! Woohoo!” Then I forgot to post it…

The chemo brain is strong with this one!

Aside from that, I’m doing well but super tired!

I may have mentioned that my liver numbers were a little high at my last chemo appointment. Well, they’re still a little high. So Dr YB reduced my taxotere dosage, as that can sometimes be a side effect. So we’ll see if that changes how I feel this cycle since taxotere is the nasty one. It would be nice since Christmas falls right smack in my bad week, so it would be cool to feel not as bad.

It was a long day, but I chatted with my recliner neighbor and listened to a book on tape, then did some word games and puzzle books. Tomorrow I’ll go for my Neulasta shot, and I don’t have to go for one week labs next week since my white and red cell counts have remained well throughout treatment. Score! One less thing to do the week of Christmas!!

After the Neulasta shot, the next thing I have to do is chemo on January 8th!

Oh! And I did talk to them about the evil hot flashes. Since my liver numbers are rising, the doc didn’t want to add any news meds to the ever growing cocktail I already have, as that can make those numbers worse. As it is, post-chemo I’m taking meds for: heartburn, nausea, and diarrhea, plus a steroid and Claritin for the Neulasta bone pain. And then I have other meds to take for more random symptoms that may pop up. It’s bananas, but I get it. So I’ll deal with the hot flashes. They’re a result of the hormones, since I’m basically in an induced menopause. Once I come off the chemo on January 8th, I’ll be continuing some hormone maintenance stuff until September. So once the chemo stops and the side effects slow down and those liver numbers go back up, we can look at treating the hot flashes.

I can’t really complain, I mean I’ve finally found fixes for most of what I’m experiencing, except the fatigue, lightheadedness, and hot flashes. It could be worse!

Ok, I’m going to crash! Have a great evening!!

Chemo Brain Is For The Birds

I’ll be doing something and forget what I’m doing. I’ll be talking to someone and just trail off. My reflexes and reaction times suck, one of the reasons I stay home from work during hell week – no one needs to be on the road with my chemo brain behind the wheel.

I can’t concentrate enough to read, even for pleasure. Same with writing, just can’t put the thoughts together. 

It was better this last cycle, and I think that had something to do with taking a lower dose of steroids. But it still wasn’t great. I was just less lightheaded and spacey, but still a bit of a spaz. 

So funny story, sort of. 

Background: I forget to do stuff. All. The. Time. When I was home during my last hell week, every day I told myself “do this, do that.” I never did it because I never remembered. Simple stuff, too, like checking the mail or pulling meat out to thaw. So I finally made a list so I wouldn’t forget. Worked like a charm. 

Back to the sort of funny story…the other day I went to the grocery store…without a list! I was so incredibly lost. I went there with the specific purpose of getting ingredients for sliders. I spent a really long time shopping for fruit, browsing the ice cream, texting my BFF, and wandering around trying to remember what went on the sliders. Each slider had like three ingredients, and it just wouldn’t compute. I wish I’d been wearing my FitBit because I bet I logged some serious steps in there from walking back and forth across the store.

Moral of the story, make a list! Always make a list! 

Cycle Two Update 

I can’t remember if I mentioned that when I met with Dr YB before my chemo, we talked about my symptoms and side effects, and he recommended only taking half the prescription steroid I take the three days following chemo. The reason for this was because a) it seemed like several of my symptoms could be a direct result of the steroid, and b) not all people need the steroid.

So the question is, have I noticed much of a difference with that change? I’m less foggy, lightheaded, and fatigued. That’s been wonderful, because it has allowed me to be more active. I made dinner twice this week! Last cycle, I was horizontal.

As far as my digestive tract, it’s nearly identical to last cycle. I warded off potential nausea the night of/morning after chemo with the Zofran. I had one BM Tuesday night after chemo, nothing since. I have Mirolax to take tomorrow if things don’t happen in that department. We all know how I appreciate regularity in my life. Ha! I also have a lot of heartburn, Thursday in particular. I took some pepto, and later an over-the-counter heartburn medicine, with some relief, but not a lot. Tried to sleep in a reclined position to ward off discomfort. Worked a little, not a ton, especially when I was woken up by some jackass in a pickup truck with no muffler, messing around on the road behind my house. Thanks, dude. Appreciate it at midnight.

What else? Ah! After chemo on Tuesday, I napped for about two hours. After the first cycle, when I woke up every couple hours throughout the night, I decided I would allow myself a nap, damn Benadryl, but wouldn’t go to bed for the night until later, like 11:00pm. So that’s what I did. Or tried to do. But I never slept!!! I was up ALL. Night. Long. And Wednesday, I was functional on no sleep. I worked two sessions. Then I went for the Neulasta shot and the MA (same sweet gal I had last cycle for labs who got me fluids!!) told me it was the steroid drip I had the day before. That can disrupt your sleep. Yay…not. If there’s anything I like more than food, it’s sleep.

I slept fine Wednesday night. Woohoo!

Appetite has been fine, and I’ve been able to continue to drink water. By the end of the first week of my first chemo cycle, I was already having trouble drinking water because the taste was salty. I loaded up on juices and stuff this time around because I wanted to have an alternative to water in case that aversion comes back, and so far I prefer the water, which is great! I hope it lasts.

Dry skin on my hands. Annoying. The top layer of skin is cracking a little bit on the sides and knuckles and it just peels and peels and peels. I’m using lotion, but it doesn’t really seem preventable at this point since it’s already peeling. It’s annoying, but not causing discomfort or pain.

Less tingling this time around. I think the tingling was the hair follicles dying everywhere, so I’m guessing since they’re already dead, that’s not going to happen in the same way. Taxotere is no joke! That’s the chemo drug that generates all the excitement. It’s a pain in the butt, but it’s killing my cancer, so it’s a small price to pay!

So that pretty much sums it up so far. I feel like it’s been less eventful, but I haven’t hit that 7-10 day mark yet, and that will be the true test. That’s when the appetite left the building last cycle and I was probably less than pleasant to live with. Here’s hoping that water and me continue to get along, at the very least, and that some of the easy foods I purchased in anticipation of that part of the cycle work out!

Today was a bad day.

No, it wasn’t the worst by far, I’m sure. But it sucked. 

My tongue feels like it’s burnt, like I ate or drink something too hot, if that makes sense? And it seems to have skewed my tastes a bit, particularly with sweet things. I had some soup, and that was OK, but when I tried to drink a Powerade, eat grapes and fruit snacks…no bueno. They tasted horrible. I spit them out. I’m not supposed to eat a lot of sweets anyway during chemo because the sugar/carbs/whatever can cause fungal infections. (Yay!) So it’s not a big problem, probably a good way for me to avoid the sweets, but I wasn’t expecting it, so I couldn’t eat the snacks I brought to work today, and was hangry by the end of the day. And it was a long day because I had class. So waa waa waa. 

I’ve also had some nausea and heartburn throughout the day, and of course, constipation. Because why not? I boast about regularity, and voila! Irregular. So that sucks. The trio of doom are probably all tied together, and hopefully the situation will be rectified soon. 

Other than that, more tiredness. Not quite fatigued. Still a little bit of that buzzed feeling that’s a result of the steroid, I’ve learned. So since today was the last dose of that this cycle, hopefully tomorrow will be a better day. 

My long days, the 8:30am-6:30pm days, are going to be a challenge. I’m going to have to see how that goes over the next week or so, because my focus is pretty much shot by 5:00pm. And that was today with only working 12:00-3:00, and then having class from 4:00pm-6:15pm. Not even a full day! Yikes. 

Anyway, while I’m experiencing a high dose of “feeling sorry for myself” today, I’m still trying to stay positive. The side effects I could be experiencing could be much worse. So there’s that. 

Chemo Brain – Is that even a thing?

I’m doing pretty well. I haven’t had any really bad side effects beside some stomach cramping, which I took Pepto for. The stomach cramping would have most likely led to diarrhea, and seeing as though I was driving to work (a session with a kid), it wasn’t exactly the most ideal time to be experiencing that. So, yeah…

(For anyone who is keeping track, it’s been 30 hours since my last BM…I’m not happy about that, but it’s better than having the runs. At least to me, at this moment. And now that I’ve written that out, I just know my doctor is going to yell at me for not telling him I haven’t had a BM in 30 hours. Ugh.)

Anyway, the only thing that’s been pretty persistent is tiredness. I would love to nap, all the time, but because I’d also love to sleep through the night, I’m trying to last until 9:00 or 10:00. When I went to bed at 10:00, I wake up every couple hours and am restless throughout the night. Not fun. But I know I need my rest, so I’m trying to be flexible and fit in naps after work when I can.

Today, I feel like I’ve been hit by chemo brain. I seriously haven’t looked it up, so I don’t know if it’s a real thing or not, but I imagine I’m not the only chemo patient out there who has experienced it. To best describe it – it’s like I’m buzzed. Not drunk. I’m still alert and capable, but I’m a little spacey, sort of feeling good, but it’s just not the right time to feel buzzed. Almost like a fog…

Today, I wrote down an August date…twice. I caught myself and fixed it, but still. Oh! And typos, lots of typos, too. Thank goodness for auto-correct and spell check! I had to add a note to my professor for my assignment submission today because I read and re-read it, and it looks and sounds OK, but who knows? I’m apparently not the best judge of anything today.

So yeah…chemo brain. I hope this isn’t an ongoing thing. It arrived on Wednesday morning, 2 days post-chemo and 1 day post-Neulasta. We’ll see how long it lasts…

Hehe, and seeing Neulasta typed makes me think of Nutella… See what I mean? It’s just not normal.