Category: Recovery

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Radiation: Day 1

I returned to the radiation oncologist’s office for my first treatment yesterday. At my therapist’s behest to “go easy on myself”, I took an Ativan beforehand, since my husband was with me and would be able to drive us home. The radiation tech I’ll be working with everyday for the next six weeks is named Tony. He seems like a pretty laid-back, affable guy (or perhaps that was just me/the Ativan). Anyway, getting back into the high-tech torture rack that is particular to my treatment (mask, tongue depressor, straps, etc.) was a bitch, but maybe I’ll get more used to it with each passing day. It’s uncomfortable, not painful, as is the radiation itself. I’m only “under beam,” as they call it, for about five minutes. A huge, mother ship of a machine pivots around me while making strange buzzing/humming/whirring noises and then it’s over. The fact that I felt nothing other than the pressure and tightness of the mask and tongue depressor made me wonder if radiation’s not some kind of smoke-and-mirrors gambit. I’m sure the eventual side effects will prove otherwise.

To that end, I’ve already begun the rigorous oral hygiene regimen prescribed to ward them off (or at least, minimize things): an oral rinse I use every 1-2 hours, prescription toothpaste and mouthwash, hydrating constantly, avoiding acidic foods, etc. You could probably also add writing here to the list. Yesterday, I came across the following quote from a writer and poet I quite admire, Ashleigh Young: “If making work–any work at all–helps you, then keep doing it. However imperfect.” As someone who tends to be very self-critical, I found her words heartening.

Day one down, twenty-nine to go.

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It’s not your fault

Since my diagnosis I’ve been in a lot of doctor’s offices, and this is a question commonly asked of new patients (along with drug allergies, the date of your last menstrual period, etc.). But now that I have this rare form of oral cancer, it feels somehow loaded. Is it all my fault? Did I do something wrong? I’m pretty sure the answer is no, but it’s taken me a while to accept this (and truth be told, I’m still working on it). Here’s a bit on how I’ve tried.

When the oral surgeon first told me that I had MASC, I sat in shock, blinking for a few moments before asking, “Why? What did I do? Did I do something?” She assured me that it was not because of something I had done–that although this form of cancer was rare and relatively new, I didn’t fit the profile of those more commonly at risk for it (men in their 50s-60s). Most likely, she said, it was the result of a genetic aberration. I then asked if I should do anything differently now that I had the diagnosis, any lifestyle changes I should immediately make. She looked pained to have to tell me no, not necessarily.

For a few weeks after that, during the agonizing period of waiting for my next appointment, PET and CT scans, more information, etc., I remained unconvinced and felt paranoid about every decision I made. Should I not have a glass of wine with dinner? Should I cut out my morning coffee altogether? Should we stop using dryer sheets with our laundry? Should we only buy organic produce? I realize, now, that I was in a very vulnerable state, and casting about for some sense of control in a situation where I had very little. These changes would have been more or less negligible although, at the time, I thought they were a matter of life and death (and yes, I know there are folks out there who disagree–more to come on them later). Anyway, I was trying to rationalize what was happening to me, and the only rationale I could seem to latch onto was the notion that I deserved cancer because I had done something wrong. If I did that particular thing (or things) right, I could stop it or stave it off.

I’m fairly certain this line of thinking is both natural and flawed. I didn’t get cancer because I’m not in perfect health or perfect shape or didn’t make the right choices at every turn, whatever those may have been. I often remind myself of Olympic gold medalists who have been diagnosed with cancer, like Kikkan Randall and Nathan Adrian and Lance Armstrong. Or, you know, young children. There’s absolutely no way they invited or “deserve” something like this. No one does. Health, illness, mortality, these things aren’t as meritocratic as we might like to believe (again, the appeal there being the sense of control such a system or logic would afford). As the bard said, they’re “the slings and arrows of outrageous fortune” and every living being is always already making the noble choice to suffer them. They, we, I, deserve nothing but compassion.

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Happy Halloween

So this is how I spent Friday afternoon. I had to return to the radiation oncologist’s office to have a mold made for my upcoming treatments. It looks like a cross between the Jason mask and medieval chainmail a la the cover of Seamus Heaney’s Beowulf (incidentally, another text I teach my seniors. Here’s hoping I only have to fight this monster once).

Before we began, the radiation technician asked if I was claustrophobic. I told her I didn’t think so, but then again, I’d never done anything like this before. She proceeded to lay me down on the narrow table they use for CT scans and MRIs, lock my wrists in a hold, align my body with a laser overhead, and drape this dripping hot wax/plastic/rubber sheet over my head and shoulders. Panic didn’t set in until they placed a large foam tongue depressor in my mouth and fastened the mask to the table. I may not be claustrophobic, but I am HUMAN, and nothing about the situation felt like a human should be in it, let alone for twenty minutes.

I could only breathe through my nose, had difficulty swallowing, and would compare the experience to that of being in a coffin or straightjacket. The tech then ran me through a CT “simulator” which took images that my doctor will use to develop my radiation plan (i.e. where, precisely, the beam will be targeted). I asked them to tell me when it had been five minutes, ten minutes, etc., which helped assuage my anxiety ever so slightly. Somehow, I got through it. As soon as I was out of the contraption and sat up, tears began streaming down my cheeks. Was it relief? Sadness that I’m having to go through this at all? A number of reasons seem, to me, altogether plausible, but the tech looked puzzled. “I’m going to ask the doctor to get you a prescription for Ativan,” she concluded.

I know it’s just another day at work for them, but for patients going through this for the first time, it’s like being deposited on another planet with alien customs and an alien tongue. Someone else’s surprise that you’re having trouble adapting, rapidly, to a cancer diagnosis and its treatment is one of the harder things I’ve had to deal with thus far (and, thankfully, I haven’t encountered it much). Maybe I’ll ask the doctor to get her a prescription for Sympathan.

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Onto radiation

Yesterday, I met with my radiation oncologist for the first time. The waiting room was packed, even at 8:45 am. I realized, once again, that I’m not the only person going through this. Lots of people are. In fact, that’s one of the funny things about cancer. At this point, virtually everyone knows someone close to them who has had it and, in many cases, recovered. Which makes it feel something like the common cold, or allergies. But, you know, a cold that could kill you. It’s a gnawing paradox. As is the fact that every medical waiting room I’ve been in lately has a giant flat screen streaming HGTV. What’s up with that? It just incites ire (in me anyway) to think about how much less a complete home renovation costs than the healthcare we’re all sitting there waiting for.

I was called back to meet with Dr. Higgins in relatively short order, and she was lovely. Calm, composed, empathetic, informative, funny. She took her time with me, which is something I’m really beginning to appreciate in doctors, especially when their waiting room looks like the airport gate for a delayed flight. I’m wary of essentializing gender in any way–I believe that most of it is culturally constructed and imposed–but my experience with female doctors has been markedly positive. That said, it also threw me for a loop that she was roughly my age; for so much of life, doctors are always reassuringly older than you (and yes, I’m aware that this is a form of ageism).

Anyway, she walked me through the next steps of my treatment, as well as the possible side effects, which are varied and intimidating (loss of taste and appetite, severe dry mouth, painful sores, etc.). I will have radiation to my “oral cavity” everyday (excluding weekends) for six weeks. It will be particularly difficult towards the end of that time, and recovery after radiation could take up to six additional weeks. Needless to say, any summer beach plans are now on hold. But that’s ok. I’m on a bit of an unexpected detour in life, and the beaches will still be there when I return to the main road (where I won’t leave my kid in the car).

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Some thoughts on the final season of Catastrophe…

First things first: my thyroid ultrasound came back clear! Or, to use the hard-boiled detective language of my doctors, there were no “suspicious nodules” to be found. [INSERT FUNNY CELEBRATION GIF HERE, because I don’t know how to yet].

In other news, my husband and I finished watching the final season of Catastrophe last night. It’s a beloved show in our household, but season 4 (and, in particular, the last episode) left me fuming. [Note: spoilers ahead.] WHERE WERE THE CHILDREN?!? Admittedly, Rob & Sharon’s two kids have long been inconspicuous additions to the cast, but this season, that was especially the case. For the first few episodes, I thought that maybe their baby daughter had died and I somehow missed it?!? There was no mention of her; no scene in which she appeared. Muireann finally shows up in a later episode, on the floor beside her parents’ bed (at which point my husband quipped, “See? She’s been under their bed this whole time.”). Then, in the penultimate scene of the last episode, Rob & Sharon take a walk together after his mother’s funeral, pushing a visibly empty stroller. They’re talking about some heavy stuff, but heavier, still, than their floundering marriage is, I would venture, their missing child. Make that children. Where the hell is Frankie?!?

Which brings us to the final scene of the final episode [Note: spoilers immanent]. Rob & Sharon are driving along a lovely, deserted coastline, with both kids asleep in the back of the car. Sharon asks him to pull over so that they can get out and talk, which he does. They share a meaningful, tender exchange, then go quasi-skinny dipping WHILST THEIR CHILDREN ARE STILL IN THE CAR ON A WARM DAY IN THE SUMMER.

I’m sorry, but you can’t be a show that traffics, refreshingly, in a kind of graphic realism (think back to the scene when Dave OD’s, Rob frantically administers CPR, and they both barf all over each other; or when Sharon’s leaking breast milk stains her blouse, or, etc.), and then LEAVE two children in a hot car on the side of the road while you take a spontaneous swim. In reality, when you stop the car, babies frequently wake up and start crying (it has been established, through various dinner scenes, that Frankie is mute). I know it’s a metaphor and all–making a marriage and family work is like swimming out into a riptide; it’s a wild gamble–but other things are not. Those kids are toast.

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Doctors off the record

The other day I stopped by a coffee shop where I overheard the confab, above, between an older surgeon (he was in scrubs with a hospital badge & I asked him what he did there, so that’s how I know) and some younger residents. Pretty relieved I heard this after my own procedure.

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Some days it’s harder to laugh than others

This morning I went to visit my friend, Kate, in the hospital. She’s been battling cancer for more than a decade, and is currently fighting an infection from a recent surgery. It felt something like a pilgrimage, going to see her. I suppose this is because witnessing another’s suffering feels holy, is holy. As is the suffering, itself. You’re taken out of time, somehow, and placed in another dimension. A hushed dimension of latex gloves and gowns, popsicle wrappers and empty coffee cups, drips and drains–the curious consolidation of life in a tiny room with a seismic purpose.

It was good to see her. It also gave me deja vu; I was recovering from surgery in a hospital bed not long ago, myself. I remembered how all of the smallest things presented a challenge–lifting a cup to drink carefully from a straw, the strain of simply moving, shifting, or adjusting my position in any way. My nurses would write “goals” on the dry erase board in my room that graduated from “pain management” to “going to the bathroom” to “walking.” Like I was being born all over again and rushing through toddlerhood in the space of a week. In my case, the comparison seemed especially apt because I was also re-learning how to consume liquids, then purees, then solid foods with my new (I won’t exactly say mangled, but yeah, mangled) tongue.

Kate means a lot to me because not only was she a wonderful colleague when we worked together, but she also played host to my daughter’s first Thanksgiving. My husband had to work that Thursday; I wasn’t ready to travel, solo, to see family with an eight-month-old; and most of my friends were out of town. I felt a bit stranded and lonely, and Kate graciously invited us over. I remember her ducking to check on the turkey while her husband danced around the kitchen with my daughter, singing “Can’t Help Falling in Love” in a surprisingly good baritone. In fact, I’ll never forget it. So a visit today seemed like the smallest possible return gesture for that lasting kindness.

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Cancer Gift Guide

Let me preface this post by saying that every kind word, hug, card, text, phone call, and email has meant a great deal to me. These are just a few other gifts that I’ve particularly enjoyed, in case you have a loved one going through something similar and are wondering what might bring some comfort.

A student gave me the world’s coziest blanket, which I have basically lived in; my husband’s co-worker gave me these epsom salts, which are aaaaahmazing; and flowers serve as a lovely daily reminder of who sent them.
Books! Fuzzy socks! And this incredibly thoughtful accordion organizer with a day-planner for medical appointments, records, business cards, receipts, instructions, etc.

Many friends and colleagues have also brought by meals, which has been a huge help, and I’ve asked for recommendations re: good comedies (TV shows, movies, podcasts, etc.), since that’s all I’m interested in consuming, media-wise, at the moment.