What It Is Like

This post is dedicated to friends and students who’ve shared with me some of your experiences being the child who cares for a parent going through this. You all make me strong, as I’m sure you made your parents strong, too.

I thought I had an inkling of what chemo was like. I didn’t. Some of you already know, through the hard experience of watching your loved ones go through it. But this post is for the rest of of us, like me until recently, whose knowledge of chemo starts and ends with Samantha and her ice pops on Sex and the City. While my own storyline does also satc2feature an impossibly wonderful love interest who arrives on the scene in my 40’s (albeit with a lot less hair than Jarred), it’s not quite what SATC set me up for.

So, here is my attempt to explain what chemo is like for me. Emphasis on for me, since every chemo regimen is different (A/Cs barely talk to TCHPs, and there’s probably a West Side Story level tension between the weeklies and the every-three-weeks). Mine is four drugs every three weeks, for six cycles. I’m closing in on halfway through, and I’d like to say that gives me expertise, except every cycle is irritatingly different. There is no Chemo Skill Acquisition going on. And frankly, it would be about as valuable as being able to build Ikea cabinets with rolling drawers…is it worth the agony to master something you hopefully only need once?

So here’s how I used to picture it: Throwing up and hair loss. Perhaps some languid days binge-watching shows while feeling delicately, but always graciously, tired.

Here’s how it actually is:

  1. Hair loss is the easy part. I mean it’s weird, but utterly bearable. You run your fingers through your hair, and you end up holding a bunch that might constitute a respectable ponytail (ok, if measured by the parent of a bald child desperately trying to pretend she has enough hair for a bow, not that I’ve been there, and goodness, Bea has glorious hair now, so it all worked out fine). I eventually got Dave to shave mine before it all fell out, partly to make an occasion of it, and partly so that Phoebe could maintain shedding dominance in the household. I didn’t want the EGdog’s nose to get out of joint at my new shedding abilities. And now I look a bit like Emma González, and that’s pretty great.
  2. Nausea has meds. Also, nausea is just nausea. It can take your appetite away, which isn’t great if you’re trying to keep your weight up. But I’ve had hangovers worse than chemo nausea. Not to mention morning sickness. Nausea feels like a recognizable, if kinda sucky thing. Part of our great™ Shared Human Experience.
  3. Other GI issues suck. But I lived plenty of years in Africa, and trauma to my GI system is pretty much like a reunion with an old friend. Ok, not quite, but also you don’t want me to say more.
  4. Exhaustion is real, and so is insomnia. This is where the experience started being something I could not have imagined. I’ve been brutally physically tired before (after labor and delivery, during those first colicky months), and this is its equal. And sort of like the early baby months, it’s also paired with completely unsatisfactory sleep. I’m tired, tired, tired, and then at 2 a.m., I’m completely wired for hours. So when I yawn during a visit with friends, I promise, it’s not that you’re boring. Or maybe you’re boring AND I am exhausted. (Kidding. I don’t have boring friends.)
  5. Feeling like the Undead. This is close to the absolute worst of it, and the thing that is hardest to explain. For obvious reasons, it sucks to have life-saving poison coursing through every cell of your body. And that’s what it is. The same drugs that kill the cancer cells kill a whole lot of other cells necessary to living, including cells in my brain. So while I may be–at times–sitting upright with my eyes open, I am so disembodied on the bad days that even watching TV feels like way more engagement than is possible. I have had many kind people recommend binge-watching various things, and I know the world is full of incredible television watching possibility. Just. Not. Now. My brain processes words and sounds as phenomena flashing through my brain, not as any coherent whole. I spent an hour yesterday trying to read the same two paragraphs of an article. On the bad days, I can just about handle a few minutes at a time of facebook or reading the news online, but we all know that feels bad even when we’re in the best of health, like eating too much sugar. Which leads to…
  6. Watching the Clock. This is the hardest for me. Usually, when I have my eye on the clock, it’s because I’m trying to do one (or two or ten) more things before teaching class or getting something filed, etc. Lately, I watch the clock to see if I might be a few minutes farther into the bad chemo days, since that means I might be a few minutes closer to feeling like myself again. That kind of clock-watching is the worst, and not even the fact that I’ve got the right Broadway lyric for it* actually helps. The world just gets very small, and for someone who is used to living life very fully, that is the most unnerving thing of all.

The good news is that the bad days do pass. Unfortunately, the bad days seem to get a smidge longer with each cycle, so the back-to-recognizing-myself date that might have been Day 5 the first cycle is Day 7 now. I’m writing this on Day 7, and it’s literally the only thing I’ve done today, and I haven’t gotten off the couch, and am terrified to go take a walk in case I tank while I’m out. So “back to myself” is somewhat relative.

Someone described chemo to me and Dave as “walking into a punch.”

And it’s not the infusion that’s the punch. The punch is the subsequent days of existing inside a body that feels entirely foreign. It is the nagging fear that after all this is over, I’ll have changed in ways that are maybe not so possible to unchange. It is the struggle to trust that a real me is still in there, and will come out like the crocuses after winter.

Forget daffodils, tulips, azaleas and dogwoods…I’m metaphorically hooked on crocuses, those hardy, beautiful first flowers to appear, even if they’re a bit weedy and not so Instagram-worthy. They persist, and I will too, even if I have to walk into a few more punches before blooming.


* “Today, the minutes seem like hours, the hours go so slowly…” (and we all know how that clock-watching turned out for Maria).

2 Replies to “What It Is Like”

  1. As you say, Liz, this bloody awfulness will pass too. I know I have no idea what it’s like for you, but from your fantastic writing I get that you are capable of hanging in there, despite all the clocks slowing down damn them. All our love to you hon.

  2. Jeezus! That sounds pretty horrific. I knew chemo was never fun for those that had to have it done, but it sounds a little heartbreaking. Big respect to you cuz, for your incredible inner strength and thank you for sharing it in such an insightful manner that I can better empathize with others that may experience it. Much love sweety!

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