With week 3 of taxol behind me, the side effects are starting to hit hard. I was expecting this — I’ve been through this before and know what chemo feels like — but it’s frustrating nonetheless. Usually the steroids (which I’m stopping next week because they make me feel a little too on edge after chemo) carry me through Saturday evening, but I woke up Saturday morning at six am with a sharp body pain and temperature fluctuation I hadn’t really felt in a couple years. Hi, taxol, nice to see you again.
Side effects are tough. They remind you, for about half the week, that you’re not healthy. They’re hard to think through because the cancer itself isn’t causing you to feel so sick — it’s the cure doing it instead. I calculated the other day that, once I stop the steroids and no longer have the energy they granted me for Thursday night through Saturday evening (or morning, as it seems, which makes me feel better about stopping them), I’ll lose about a month and a week’s worth of time to fatigue, pain, congestion, nausea. That’s if Monday’s keep ushering in post-chemo energy and health — which, I know from experience, won’t be the case for long.
But the point of this post isn’t that chemo is rough — that seems almost too obvious to write. Of course treatment for cancer sucks; you willingly poison your body with chemicals so powerful they can kill cancer faster than the cancer can kill you. I don’t pretend to be a scientist or a doctor (okay, maybe sometimes I’m tempted), but that equation makes sense to me. Chemo destroys cells that specialize in mutation, and destroying actively mutating cells requires a medication that’s incredibly potent. That’s fine.
But while the side effects themselves don’t bother me, the way they interact with my life does. One of the side effects of taxol is shortness of breath and restriction in my lungs; sometimes I feel as if someone is sitting on my chest, preventing me from breathing. This morning, while climbing at the gym, every overhang I encountered gave me trouble. Routes that I flashed the first time or should climb without difficulty suddenly required a monumental effort and exasperated the soreness in my lower body (another hallmark of taxol). I took breaks every 4 or 5 moves, leaning my head against the wall and waiting for my chest to stop heaving with tightness and pain.
Goddammit, I thought, I just want to keep climbing.
I refuse to put my life on hold for chemo, but sometimes it demands I move in slow motion. There’s almost no way around the frustration that causes. I’m getting used to the side effects again — the pain, the nausea, the fuzziness, the fatigue — as they slowly become part of my everyday life. But sometimes I have moments when I wish I were chemo free, even for a brief instant, to get through whatever it is I want to do. I’ve moved in fast forward since I was born (as my dad has often quoted my elementary school principal about my outlook on life, “If you can keep up with her, she’s a lot of fun”), and the speed treatment demands feels entirely alien. I want to keep moving quickly — why should I have to slow down?
I came across a blog the other day by a woman with breast cancer who gives voice to women on the other end of the spectrum — those who have more trouble pushing forward with active lives in the midst of treatment. While I don’t remember her words exactly, her About Me ran something like this: “We all know women like that, who do chemo and somehow manage to race mountain bikes, have a family of 10, pursue a full time fulfilling career, and in so doing make the rest of us feel bad.” I know I fall firmly into the camp of women she’s positioning herself against, but I would hope that my attitude doesn’t diminish the fact that the side effects of treatment — especially long term treatment — are hard for all of us. None of us, not even those who stare cancer in the face and refuse to blink, come out unscathed.
I think that’s where my frustration comes in. Like I said, the side effects don’t bother me. I knew they were coming and they’re well deserved (die cancer die!). And when I think carefully about it, having to step off the wall 3/4 of the way up a climb I should be able to finish isn’t too big of a deal. Where my frustration really lies, and where I think it lies for many of us with a stage IV diagnosis, is the fact that, no matter how bravely and intensely we stare cancer in the face and refuse to blink, it refuses to blink too.
I know my cancer will most likely never be gone; I know I will probably never be cancer free. I know I will die younger than I should from a disease that will ultimately break down my body and its ability to work in a manner so painful that I can’t comprehend of it until I am there. I know the time I have before that will be tainted and restricted by bouts of treatment — sometimes more so than others. For some reason, however, these things do not frighten me. Maybe it’s because I’m not there yet, but the fear of that reality has yet to set in. Instead of fear, I feel frustration or something akin to anger (which is a fairly alien emotion to me — I don’t get truly angry often). I’ve had to rearrange the way I think of time and the way I approach my life, both in the short term and the long term, and that makes me irritated. Certain aspects of my life that I assumed would be true I’ve had to give up. I’ll never have a family (to do so would be honestly irresponsible), I won’t have a normal job search, I may not have the kind of career I envisioned. That sucks.
But I also know, and have to keep reminding myself, that the time left is still mine. As much as it’s changed, I still get to own and participate in the time I have left. Sometimes, that’s hard to remember — I forget that the future isn’t all gone, that change doesn’t mean deletion — but oddly, thinking about my side effects and their inevitable effect on my life has helped. Even when I’m not healthy, even when I’m stepping back from tasks I normally complete with ease, even when I’m tired or sore or angry or just worn out, I’m still putting my energy into something that affirms that I am more than just a cancer patient. I think that’s why I’m one of those women who run out and do everything they can as energetically as they can during treatment. I need to feel that this is all side effects — that the main attraction of my life is still me and what I do with it. That life may be drastically different from what I envisioned for myself, but it can still be front and center. Cancer doesn’t have to be, even though it doesn’t blink when I stare back.
Despite the fact that cancer is probably as stubborn as I am, my energy is more present, and if I work at it, I can push illness to sidelines of my life. Because side effects are just that — on the side, in the wings, offstage — in other words, not what I need to focus on. It takes a lot of work, but I’ve decided: from now on, I’m working on relegating cancer and dying to the side.