I feel like a walking motivational poster you see in a high school classroom or doctor’s office right now. You know, the ones that say things like…

“It always seems impossible until it’s done”

or….

“Believe you can and you’re halfway there”

even better...

“Remember… no matter how much it hurts right now, one day you will look back and realize it made you stronger”.

Only problem is, most of the time over the last week, I have not actually felt that way at all. I try to stay positive. I thought I had the right mindset and mental fortitude for chemo. You know “mind over matter”. It wasn’t going to be that bad. I was going to be one of those stories where I managed to work through chemo and generally did not feel that bad. The reality has been very different and hard on me. When you read the list of possible side effects, it all seems manageable. And I am sure many people like me assumed they would not have all of them. Well, the reality was quite different. Chemo is hard.

First, a big part of the experience is hard to put in words or on a list of side effects because it is not anything I had ever really experienced before. What I finally came to, in order to help explain it, was that I felt like I was operating at a different frequency. I know the couple days of steroids didn’t help. That always makes me feel strange and amped up, but I guess this whole poison/medicine that is killing all your rapidly reproducing cells has something more to it. I felt like there was something strange or toxic in my body. I just didn’t feel normal. And then the real side effects kicked in. Things like nausea, terrible headaches, the severe body aches, bone pain and a healthy dose of fatigue.

There is also Neulasta, which is used to stimulate the growth of “healthy” white blood cells in the bone marrow. This is pretty amazing and important medication, but bone pain that accompanies it has been intense for me. 

Other than the first few days of steroids and an arsenal of anti-nausea medicine, the recommended medication is Tylenol or ibuprofen. Oh and don’t forget to take your Claritin. Loratadine has been proven to help with the side effects from Neulasta. I am not sure what others experience, but the idea that some Tylenol or ibuprofen are going to cut though the effects of these drugs is laughable.

My chemo sessions are on Tuesdays. Going into it, I had decided/hoped that by Saturday I would feel somewhat better and be able to partially enjoy some of the weekend with my family. I think this first treatment was just a rude awakening to the reality of chemo and how it made me feel. I definitely had ups and downs, and most things didn’t hit right away, but it took a full week for me to start to feel normal at all. I had heard people talk about a chemo hole. How you fall in and then climb back out. I know my experience so far has been mild in comparison, but I do understand this analogy.

I am grateful that I am not on a more intense chemotherapy schedule/regimen. I have spent a lot of time reminding myself how much worse and longer it could be (back to that motivational poster). All that being said, it was, and is still hard, and I am trying to be okay with that. My experience is my experience. Sure, I wanted it to be different and easier, but apparently that is not within my control.

Reading back, I realized I did not mention what, for me, is the elephant in the room. My damn mouth. Nothing has tasted right since the morning after chemo, and it has progressively gotten worse. At this point, the texture in my mouth is completely off as well; the roof of my mouth is very rough. I don’t have any sores (not yet at least), but it is very annoying. Nothing tastes right, I constantly have a dry mouth, and water tastes kinda sweet and very unappealing. I am the poster child for water consumption, and I am seriously struggling right now. Some food and drinks I love taste downright terrible, and many others I can just barely taste. This side effect is obviously in a different category than the ones discussed earlier, but man, it is annoying. It sounds like things should get back to normal 1-2 months after chemo ends. That feels pretty depressing, but it will be okay.

This post has honestly taken me a while to write. First, I was just writing it in my head, and then I started trying to get it down. I am now sitting in my kitchen on Thursday morning before 6am, quite tired because I couldn’t sleep, but feeling pretty good. I have made a to-do list of things I hope to accomplish today around the house, more likely today and tomorrow. The best news is that I did not get out of bed with a raging headache. All in all this feels pretty amazing.

With the two surgeries close together and then chemo starting before my compression sleeve was even off from the second procedure, there is so much I haven’t been able to do in what feels like forever. I definitely started chemo while still healing from surgery with no range of motion with my right arm. So feeling better and further out from surgery and chemo is pretty great. I still manage to get worn out. I am listening to my body, and stop and rest when needed. I definitely can’t just sit at the computer or do tasks around the house all day, but I am in such a better place than I was just a few days ago, and I am grateful for that.