That time when my daughter had cancer

It was a nightmare—so why are there parts of it I actually miss?

I’m laughing as I start this post, because I picked up a bunch of new subscribers (woohoo! welcome!) in response to my last post, which was about death / mortality, and an essay I wrote for Cognoscenti about the strangeness of losing my dad just before the pandemic. And now I’m writing a post about cancer. You newbies must think I’m the darkest soul on Earth. But I’m not! I swear!

And—spoiler alert—my daughter Clio, who was diagnosed with leukemia at age five, is alive and well and totally healthy at fourteen. So don’t run away screaming because the death lady is going to talk about dark, depressing things again. I’m not. (Conversely, if you were hoping I would ONLY talk about dark, depressing things, sorry.)

Nine years ago. Light years ago.

Actually, I’m going to talk about the colonoscopy I had last week. (Really, please, don’t run away screaming; I promise I’m not going to go into detail.)

I’m on the young side for a routine colonoscopy, but my doctor suggested that I get on the colon train early, given that there’s a ton of cancer in my family—including colon cancer, which my dad had. So, I did it. This meant five days of eating an Americanissimo diet of white foods and no fiber, one day of subsisting on nothing but clear liquids and jello, and then a night drinking the medical equivalent of draino and watching an entire disaster movie (Greenland - pretty good) whilst on the throne. The next morning, it was off to the endoscopy clinic in Boston.

As the very friendly, funny nurse who got me set up said, I am extremely boring, in a medical sense. (“And we want to keep it that way,” she added.) No chronic medical conditions, no past surgeries, no artificial body parts. The only other time I’ve been in a hospital-like setting as a patient was when I gave birth. (Insert feminist manifesto here about how messed up it is that women are considered “patients” when they’re doing something as natural and normal as giving birth.)

But man, did I spend a lot of time in hospitals and hospital-esque outpatient clinics for the 2+ years Clio was in cancer treatment. In the first few years after her treatment wrapped up, I found it very triggering (OMG I sound like a Millennial) to take her back to the clinic or hospital for her periodic check-ups or tests. Or to visit other people in the hospital, for that matter. Hearing hospital sounds, seeing hospital things, and smelling hospital smells—it brought back all sorts of unpleasant emotions: The devastation of first finding out Clio had leukemia. The numb terror of the time she had a seizure and ended up in the ICU. The routine fatigue and frustration and anxiety of hours spent in the outpatient clinic for her appointments and infusions, hoping to God that all of this was working.

A hospital room is no place for kids, but we did our best to make it into one.

But the farther Clio’s illness recedes into the past, the less visceral those memories feel. The roly-poly, sleepy-sick child that Clio was at five, six, feels in some ways like a separate being from the leggy, independent, energetic fourteen-year-old she is now. And the formerly 38-year-old me feels like a different person in many ways, too.

So. It didn’t surprise me that much that when I went in for my…I’m just going to say procedure, because I’m feeling shy now…I didn’t feel triggered. Instead, I was just struck by how un-triggered I felt. Even when it came to the propofol.

Propofol, you see, was the key ingredient in one of the aspects of Clio’s treatment that I hated most. It was the drug used as anesthesia when Clio had lumbar punctures for interthecal methotrexate (translation: chemo injected into her spinal fluid). I hated watching that thick, white propofol slink up the tube and into her bloodstream, via the port in her chest. I hated seeing her eyes roll back as she fell asleep. I hated sitting in the waiting room alone without her, trying to distract myself with work but inwardly counting the minutes until the nurse came back out to get me. Clio must have had at least half a dozen LPs over the course of her treatment; maybe more. It never got easier.

I’d suspected that propofol would be the drug used for my procedure. But this is the weird thing: When the nurse explained that they’d administer a drug via IV as anesthesia, I felt the need to ask, “propofol?” and then add, when she said yes, “my daughter used to get that for LPs all the time when she was in cancer treatment.”

And then, like some kind of psycho, I found away to work the cancer thing in again when I was talking with the anesthesiologist. Even as I was saying these things, I was thinking why the hell are you bringing this up, weirdo?

Was I looking for pity? No, it wasn’t that.

Was I just being a know-it-all? Like: You think you’re dealing with an ordinary patient, but I’m actually a battle-tested cancer mom and an exremely smart, well-read person who knows her shit. Aren’t you impressed?

Yeah, maybe there was a little of that in there. During Clio’s treatment I feel like I got a few nursing and med school courses’ worth of medical knowledge and skills, and it was a source of some pride. I picked up all manner of medical vocab (Neutropenia! Tachycardia! Lipidema! Cytology! PRN!) along with the ability to give shots and remove the access needle to the port in Clio’s chest, among other things. I also did a lot of reading and research on my own about chemo side effects and chromosomal mutations in pediatric leukemia and whatnot. Because the more you know, the more happily deluded you are about the measure of control you have over adverse life situations, no?

And also, yes, I have a tendency toward know-it-allism (a fault of mine), and I probably wanted to show off a little. But honestly, I don’t think that was the real crux of it.

I think I was, in a way, reminding myself that what happened nine years ago was real. I was trying to conjure it up into my consciousness—almost as if I wanted to feel closer to it—out of some perverse sense of nostalgia, almost.

Why in God’s name, you ask, would I feel nostalgic about something as horrific as my child having cancer? What is wrong with you, girl?

I ask myself that, too. So here’s what I’ve come up with: While obviously I don’t miss the fact that my daughter literally, physically had cancer that was fucking killing her, and obviously I do not miss feeling terrified and sad and worried and all the rest, there are aspects of that era that I do miss. (Please don’t think I’m a terrible person.)

1. I miss my babies. As my kids morph into teenagers, I find myself more frequently nostalgic for when they were little—a time that just happens to coincide with our family’s cancer years. It’s impossible to separate the two. I would never have chosen to have our life dominated by a life-threatening illness and a long, unpleasant slog of a treatment regimen while our kids were 5-8 years old. But that’s what happened. And in the midst of it all, we lived, laughed and loved—just like those inspirational throw pillows exhort. The kids were full-on little kids in all their glory: believing in Santa, loving picture books and goody bags, and actually getting excited about the cartoon character stickers they gave out at the clinic. Moody teens prowl the halls of our home now, and there are days when I’d kill for a hug.

2. There was also a lot of joy during the cancer years that was, ironically, a direct result of Clio having cancer: Reconnecting with old friends who came out of the woodwork to support us. Meeting new friends who were going through or had been through similar experiences. Experiencing the ways so many individuals and organizations bent over backward to give our family moments of levity and joy (and someVIP treatment) throughout the whole ordeal, from the jugglers and magicians at the Jimmy Fund Clinic, to the chance for the kids to run the bases it Fenway, to sessions at the Hole in the Wall Gang Camp. Alastair made a beautiful album for kids and families with cancer, featuring some of the other pediatric cancer patients we’d met. Hell, we even got to go to Disney World! Sweet is always that much sweeter when it’s in relief against the bitter.

3. This one is the biggie, I think: During those cancer years, I had a mission, and it was literally life or death. I knew exactly what I needed to be doing, and threw my whole self into it: Not just taking care of my sick child, but tending to the needs of my healthy child, working to keep our home life on an even keel, continuing to make a living, and, of course, trying not to break down in the midst of it all. (Something I mostly accomplished.)

   It was the hardest and scariest experience of my life, but I felt sense of pride in my strength, resolve and ability as I got through it—even moreso in retrospect. (“I know all about propofol…”). Now, by contrast, I’m at a point where I feel somewhat adrift—ruminating on mortality, adjusting to the loss of my dad, trying to figure out what’s next in my writing career, wishing I’d did some things differently, and wondering how I want to spend the second half of my wild, precious life. I think some small part of me misses having a simple, singular sense of purpose like I did when Clio was sick. Not the purpose itself; just the fact of having one.

So. There’s my armchair analysis. I imagine it’s hard to understand. (Soldiers home from combat might get it...) And maybe it is a little bit fucked up. I don’t know. But it’s the truth. And truth has a habit of being messy.

By the way, my, ahem, procedure was 100% normal. So there is no return to cancer-land in our family’s immediate future. And thank God for that.

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