I’m writing this post mainly for myself, as it’s nice to get some things out of my head. I’m also trying to keep my chemo journey transparent in case there are others that find this when they’re going through something similar, and I want them to know what “normal” looks like for me. It’s not always an easy journey, but it’s doable.
I’m also not trying to complain, or make anyone feel bad for me, I’m just trying to be truthful and transparent. Chemo isn’t any fun, and everyone’s experiences are different. We all have different cancers, different drugs, and plans are individualized. To some, I may be making this look easy, but this is the reality.
Overall, my chemo is going good, but week one of every round is tough. It’s when all my side effects are at their worst. Once I get into week two, things start to even out a bit, and it gets better. Then there is week three, which is my off week, where I don’t have to take any pills, and when most things feel pretty good. I’m never completely without side effects, but they do go down quite a bit in week three.
The side effects to chemo are the things that suck the most. It’s hard physically, and mentally, at times. That first week, even though it’s only seven days, can feel like a long time, and it’s the week that makes me wonder if it’s all worth it. It is, I know that, and chemo is only a short period of time in the grand scheme of things, but the first week of each round seems to be getting harder and harder. I think a lot of it is in my head, and I tell myself over and over again that I can do this. Thankfully, week three come along and re-assure me that it’s all going to be ok.
There are some things though that I miss due to being on chemo.
I miss the cold.
Ok, that sounds a bit weird, but cold things bother me. My skin reacts to cold in unusual ways that make me avoid cold things. Simply taking something out of the fridge makes my fingers feel tingly. Tingly is maybe not the right word, but it’s hard to explain. The official terminology is cold dysesthesia. Eating cold things like ice cream or just eating an orange from the fridge I avoid as that weird feeling also effects my mouth & throat.
Going outside makes any exposed skin tingle, and my eyes sometimes feel like they’re swelling up. Thus, I don’t go for walks often, I don’t shovel the driveway, and I bundle more than I typically need to even on nice days.
Then there are drinks. Have you ever enjoyed a nice lukewarm bottle of water? Or lukewarm glass of milk? Everything I drink has to be room temp, otherwise it’s not going to be enjoyable. Even milk on a bowl of cereal can be too much.
Typically, by week three I can enjoy some ice cream and milk on cereal, so I eat as much as I can before the next round starts.
I miss the taste of food.
The chemo pills I take make food taste weird at times and when food doesn’t taste right, it makes it less appealing to eat. I eat it though, as I have to, but I don’t eat as much. If you thought I was skinny before, chemo is only making me skinnier. This side effect is getting better with time, but we joke that I’m not currently the best taste tester right now.
I miss not getting sick.
This is probably too much information, but I’m pretty sure I’ve vomited more in the past month than I have in the past five years combined. The good news is it is usually predictable as it’s when I have to take my chemo pills, but that doesn’t really make it any better. About halfway through my second week, this typically levels out and everything stays down, but it’s always sticking in the back of my head when I have to take my pills. This is where that mental state is tough. When you know taking the pills causes you to get sick, it makes them much harder to take.
I miss my energy.
A few days after my infusion, I get tired; really tired. I can sleep for 12 hours, take a 2-hour nap, and still have to go to bed by about 8. Thankfully, that level of tiredness happens for only about three to five days, but it’s long days. After that, I have issues falling asleep for the next week. I toss and turn all night even though I’m tired. I do get sleep, but it takes quite a while to get there.
Then there is walking. I love walking. Last year, I walked almost every morning before work. Rain or shine, hot or cold, I would go out and start the day off with a walk. Getting 10k steps was my goal and I almost always hit it. Now, my unofficial goal is 1000 steps most days. Working from home is great, but I don’t get a lot of steps, and going out in the cold isn’t fun, so I walk around the living room and get what I can. Once it warms up, I should be able to go on walks again, and I can’t wait.
I miss going out and doing things.
Ok, so with COVID we haven’t been going a lot of places anyway, but we second guess going anywhere even more now as we don’t want me catching anything due to a lower immune system. When I do go out, I always wear a mask and will be wearing a mask inside public spaces until probably June at least. Honestly, I don’t mind. I’d rather have a mask than try and battle a virus on top of chemo.
Those are the big side effects that seem to be impacting me the most. There are others too, but they usually impact for a day or two and aren’t too terrible to deal with. Each round is a little different, but, for the most part, by now we know what to expect, and we are able to plan around them. This makes things a bit easier, but it’s a journey each and every round.
Again, this post isn’t meant to make anyone feel bad for me or anything like that, it’s just what I’m going through right now. I make the best of it, and I’ve been able to keep my positive attitude most days, but I can’t wait until I’m done, and my body can go back to normal. This post is mainly for me, to write what’s going on, and for others that may be going through sometime similar to know that they’re not alone.