Nuclear Winter

And some new bells and whistles

It’s the start of the new semester, and Paul has gone back to work, which entails, in his case, getting up at 5:45 in the morning. By the time I blink into consciousness at a more reasonable 7:15, he is often well on his way out the door. He hands me a cup of coffee and a kiss. “Save the world,” I tell him, as he used to tell me, and whoosh – he is gone.

I’ve gone back to work as well, but in less regimented fashion, as much of each 2023 work day so far has been taken up with the same activities I pursued over the holiday break — namely driving around to various medical appointments, at times three in one day. Thankfully, as of this week that circuit is finally, blessedly in the past. These last few days have seen not just the end of almost-daily radiation treatments, but also the wind-down of physical therapy on my so-much-better-but-still-a-little-wobbly ankle. Thursday morning the physical therapist echoed the enthusiasm of the orthopedist, who I saw on Monday. That doctor discharged me with a fresh set of x-rays, a gold star, and a salutary “I hope you never see me again!”

A broken ankle is linear, or at least mine was. The break delivers an abrupt “after” to the before of unfettered mobility. You can feel it, can take a picture of it, and then watch over time as the new bone grows, cementing two parts back into one unified whole. But radiation I have found to be circuitous, confounding, invisible.

But let’s back up: Why, I am often asked, did I have to have radiation on top of both chemo and surgery? Because a course of radiation therapy is standard protocol for breast cancer patients who have either had a lumpectomy or whose cancer has spread to their lymph nodes. I tick both those boxes, so despite the post-surgical biopsies finding there to be no evidence of cancer remaining in my breast or nodes  there was no way I was going to weasel out of it. 

I met with a radiation oncologist around Thanksgiving, and then returned once my seroma had resolved in early December for what’s known in the lingo as a “sim.” Short for “simulation,” the sim involves lying down on the table of the radiation machine with your head and shoulders on what feels like a chunky beanbag pillow. You raise your arms over your head and grip a bar that you can’t see, and then hold very still while the techs shoot lasers across your chest and take a bunch of measurements to map the sites of your (former) tumor and (formerly) impacted lymph nodes in three dimensions. When they’re done, they flip a switch and – whoosh – vacuum all the air out of the beanbag, creating a solid form in the shape of your upper body. When you return for treatment you will lie in the depression of this mold, maneuvering your body over and over into the exact shape it defines.

External beam radiation, the sort I received, is delivered on a daily basis for a set period of time. In my case, I was prescribed a four-week course of treatment but thanks to the holidays that schedule wound up stretching across almost five weeks total. Apparently cancer takes Christmas and New Year’s off. The treatment itself is fast – most days I was in and out in about 20 minutes. When we moved from the initial round of whole breast radiation – which is what it sounds like, applying radiation not just to the breast but the underarm and clavicle area as well – to the followup “boost” phase, which precisely targets just the site of the former tumor, it took longer to disrobe and get dressed again than it did to actually hit me with the photons. But while it is all painless and quick in the moment, it is still a drag. The only nice thing about it – other than the techs, who were indeed very nice – was that I was able to get treated at an affiliated hospital in Chicago, rather than drive to the suburbs every day.

“After chemo, radiation is a breeze,” I heard, over and over, before it started, but while the side effects of radiation are less all-encompassing (no nausea, no hair loss), it’s still enormously fatiguing, as your body fights back against this new, invisible invader. Two months after the end of chemo I had been starting to get my strength back. I was working out, gently, and going out in the world more. But after three weeks of radiation I was bone-tired by 3 pm – right about when it was time to get zapped with another round. And, of course, it burns. Right now my left breast and underarm are a deep brick red, with patches of brown. The breast itself is swollen and puckered and the skin itches and is hot to the touch. There’s a mystifying satellite burn on my collarbone, and I couldn’t wear a bra if I wanted to. All I can do is soothe the skin with gentle lotion, wear loose, soft shirts, and wait for it to heal. 

This burn was in the early days of radiotherapy the signal that the radiation was being delivered at the proper dose. Every patient burns differently though, and I feel lucky that my skin has not blistered or peeled or otherwise degraded. An acquaintance went through radiation and was affected so badly that she found wearing even a tank top unbearable. Luckily it was summer and she worked from home, so she simply went topless and tried to remember to put on a shirt if she had to get on Zoom.

Beyond the fatigue and the dermatitis, though, the sheer everydayness of radiation just wore me down. I’ve now learned that this is not uncommon; the massage therapist my friend Diana sent me to, who works with many cancer patients, told me her clients are often surprised by the treatment’s psychological toll. As the third phase of my treatment it’s the one I have the least secure handle on. There’s so much energy and activity around chemo, and its effects were, in my case, clearly measurable. For all its agonies, it felt like something was happening. Surgery, like a broken ankle, had some clearly delimited beginnings and ends. Radiation, however, is boring and diffuse, its positive impacts only measurable by an absence of change, its side effects invisible to anyone who can’t see my naked chest. And yet it has defined my winter.

Every day for five weeks, minus weekends and holidays and the day the machine broke down, I hopped in my car at 2:30 and made the 25-minute drive to the hospital. I’d wave hello to the receptionist and she in turn would page the techs, one of whom would come fetch me from the waiting room. I’d disrobe from the waist up and put on a gown, go into the radiation suite, and lie on a table with my breast semi-exposed. There, a little disco light danced on the ceiling, so I wasn’t just staring at the acoustical tile, and they always had music playing – Britney Spears’ greatest hits, an 80s mix, some Spanish guitar. The machine itself was decorated with a pair of googly eyes and bushy eyebrows, giving it a slightly worried affect. They’ve named it “Maurice.”

The techs themselves were funny and kind. One of them was nine months pregnant, which gave rise to lots of happy baby chat. But as I lay there, day after day, I felt trapped in the Groundhog’s Day loop of cancer treatment, the beginning long forgotten and the end nowhere in site, existing only in the endless now. 

I got pretty depressed for a while, honestly, too tired to keep beating back at existential despair. It didn’t help that on a December visit to the oncologist I asked him a few questions that had slipped my mind the last few visits. “Sorry to be bringing these up so late in the game,” I said by way of apology.

My oncologist is a very mild-mannered, gentle man, and he said, without rebuke, “Oh, it’s not late in the game. You’re just at the very beginning of this.” 

Oh.

Right. I will be a cancer patient, in some form or another, for the rest of my life.

Right.

Merry Christmas!

And yet, here we are. It’s January and radiation is over, its absence already as thoroughgoing as its presence. As I sat in the waiting room on my final day of treatment, I watched as a late-middle-aged man in a hoodie jumped up to greet a frail-looking woman as she emerged from the back halls. “That’s great! That’s great!” he said, responding to her inaudible words. “Every day? OK!” He helped her into a puffy coat that looked a lot like mine, her left shoulder visibly stiff and sore, indicative of some recent trauma to her chest. He guided her away, continuing to cheerlead, as the tech led me in one last time, and as I lay on the table under the concerned gaze of Maurice, staring at the disco lights, familiar chords tinkled out of the boom box. 

“Just a small town girl …. Livin’ in a lonely worrrrrrld.”

It’s now three days after my final treatment and I feel the heat in my chest subsiding, atom by atom. Whether that is real relief or projection, I don’t know – but in the end isn’t it the same thing? I’ll be 55 on Tuesday – whoosh! – and as I blink into the next phase of this most common cancer, an experience shared with one in eight women, at the end of a most quotidian cycle of treatment, I’ve got the lyrics of this most downloaded, covered, and karaoke’d song in twentieth-century pop history at my back. Don’t stop believing. And as ever, save the world.

Thanks so much for reading! As you may have noticed I have, as of today, implemented a paid subscription option for this newsletter. This is a feature of Substack I’ve been working up to exploring for some time but it took a while to whack through the thicket of Gen X shame about “selling out.” But don’t worry, I’m not about to take money from some R.J. Reynolds coolhunters. All subscribers will still have free access to these weekly-ish essays as I continue to explore the new normal. But upgrade to paid and you’ll also get some bells and whistles: interviews with folks I find interesting – like my aerial sling coach, herself a breast cancer survivor – plus digressions into side obsessions, and more soup recipes. In return, your support will allow me to include a few bells and whistles in my own life that I can’t quite afford right now, like regular acupuncture and bodywork. Regardless of how you engage, I’m really happy to have you here!