I thought chemo would get easier as time went by. I thought wrong.

They changed my chemo appointment and I didn’t notice on my sheet, because I’ve become accustomed to it always falling on a Monday. This morning I went to the hospital as usual to get chemo, and they sent me back home. Naturally it was one of the few times Adam had taken the day off to spend with me… It was both a relief and frustrating.

Ongoing chemotherapy: It doesn’t get easier

After my first chemotherapy session, I thought that it would get easier to handle. I believed that the combination of knowing what to expect from a chemo session, actively working towards curing my cancer, and counting down the number of sessions before I’m done. All of this makes sense on a rational and logical level. But even I can’t be rational and logical all the time…

This keeps me going.
This keeps me going.

I’ve found that I start feeling anxious towards the end of my second week after chemo. As I start to feel more normal, my ¬†energy levels come back up, and my brain starts working effectively again, a vague anxiety starts lurking in the back of my mind. I make an effort to ignore it as much as I can, but it creeps in nonetheless. Every time I have a few quiet minutes to myself, or when I’m lying awake in bed, or when I notice just how close to normal I’m feeling, I can feel the undercurrent of anxiety building up.

And the further into chemo I go, the worse that feeling gets. After a while it builds from anxiety into dread — I start actively thinking about how much I don’t want to go to chemo and how it’s going to make me feel crappy and tired and messed up again. And I start to think about how awful it would be to have to go through this whole process again (and have it be worse than it has been for me so far), or to watch someone close to me go through it.

In other words, I’m starting to feel the long-term psychological impacts of being a cancer patient. They are subtle, and you carry them with you, unseen. Lying in bed last night, I tried explaining it to Adam. He reminded me of the positives (only three sessions left, things are going well, I’m getting better), trying to reassure me as you do when someone is feeling anxious, but it’s more complicated than that.

I’m not just afraid of tomorrow’s chemo session. I know what that’s about, I know what’s coming. I don’t like how the chemo makes me feel stupid, and how it clouds my brain and makes me forget words, and the way I get shaky and tired, oh so very tired. But it’s the devil I know, and it’s not going to kill me — the cancer, on the other hand, would. And I expect that I will be cured when treatment is done, or if not, with the next course of treatment. My doctor’s confidence is high, and I believe her. She doesn’t stand for bullshit.

What I’m afraid of is the unknowable future. What if I get another cancer someday down the line? What if I have to go through a harsher treatment, or it’s something far more serious? What if my kids or husband are diagnosed? These things could all happen.

I don’t live my life expecting cancer around every corner (surprise!), but tied into the anxiety I get for a few days before my chemo session are these flash-panic-inducing, irrational fears. And while I am aware that if any of this happens then we will deal with it, that doesn’t make the tightness in my chest go away, and it doesn’t make the unsettled dreams that come when I finally do sleep the night before chemo any easier to handle.

But the panic passes when I remember to breathe. I go in for chemo and it’s not so bad, even if it sucks. People close to me count down to the final treatment on my behalf, since I don’t keep track. My life goes in two-week cycles, from chemo session to chemo session, over the hill and back down the other side. When the panic is gone, the anxiety remains, colouring my life in irritating ways — like making me think that friends are avoiding me (sometimes they are, just so they don’t make me sick), or that I’m completely incompetent at my job, or that no one wants to invite me to anything — amplifying my social and self-confidence anxieties on top of the cancer fears, just for giggles.

I like making lists

I’ve started keeping a list of the things I want to do when I’m done with my cancer treatment, to help me look ahead with a sense of purpose. While I can’t wait until I feel normal all the time instead of sick, stupid, and exhausted, that hasn’t been enough lately to keep me going. So far the things on the list are fairly mundane — record some music, take some guitar lessons, take a course in something I’m interested in (not sure how to afford that yet, or what to take), go biking, go running, get a dog, go to Disneyworld (when we’re not broke) — but I’m trying to think of more. I need to think of more.

My friend Steve, who went through chemo a couple of years ago for Non-hodgkins Lymphoma, sometimes talks about how the experience of the cancer patient really makes you feel like you need to leave a legacy. His legacy is mountain biking trails. Right now, mine is Lyra and Pandra. I don’t want to miss them growing up — the thought is physically painful. My list, though, isn’t about legacy. It’s about living. I don’t think that I wasn’t enjoying my life or living happily before cancer — because I was. But I was also putting some things off, or not giving them the attention I really meant to, out of laziness or lack of funds or variable priorities. So now when I think of the things I want to do during chemo but can’t for whatever reason, it goes on the list. When I remember to add it.

What’s on your list?