Category: Recovery

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Radiation: Halfway there

After today’s appointment, I will be halfway through my treatment. I should have been halfway through this past Friday, but a week ago, the server to the radiation machines was down, so they sent me home without treatment one afternoon. I remember this being a little alarming. My doctor assured me that it wouldn’t affect the outcome of my treatment in any way. “The server was down once before,” she said, visibly annoyed. “That was about five years ago.”

It’s strange to think that possibly everything we rely on is vulnerable to some kind of breakdown–even the most advanced technology, state of the art machines, our bodies, our minds… Confronting this truth is difficult and, no doubt, leaves us reaching for all manner of props and crutches that seem more secure, or for distractions that evade it altogether. What are these, for me? I don’t ask because I want to condemn them, but because I want to recognize them more clearly for what they are. My thought is that, in doing so, I might also be better able to recognize their converse–the ways in which I am whole and present and functional now, despite the cancer and the treatment and its side effects.

The other day, when the radiation tech (whom I’ve gotten to know and like a little better) asked how I was doing, I confessed that it was getting harder–that I was in more pain than I had been before. She responded that this was a particularly tough treatment because it takes away a crucial function–several crucial functions, actually–that you’re so used to having (namely, speech and swallowing). It was a relief to have someone inside the medical profession acknowledge how hard this is. It freed me up from having to be so hard on myself.

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Of symphonies & superheroes

I made it through Beethoven’s 9th (which was extraordinary), and Spider-Man made it through his treatment. When I walked into the radiation room yesterday afternoon, his little mask was missing from the wall. I asked the tech if he’d finished and she nodded, smiling sadly. She said that he’d wanted to take his mask home with him, and I teared up as they prepped me on the table. Things are becoming rather difficult and painful now. It’s funny–just as I’ve become adjusted to the actual radiation, to my seven minutes in the mask, the remaining 1,433 minutes of each day are proving much more challenging. I have open sores on my tongue and the walls of my mouth, which make it painful to drink, swallow, and even speak. I’m back on the liquid diet I was relegated to just after my surgery, and I pretty much have to force myself to get anything down. I saw my radiation oncologist, Dr. Higgins, yesterday (I see her every Tuesday), and she prescribed some new pain medication to help with these side effects. We will most likely increase its dosage with each remaining week of treatment. I’m having trouble envisioning the end now–envisioning myself making it to the end–but Spider-Man did it, so maybe I can, too.

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Salivation Station

Although it’s nice to have a reprieve from radiation on the weekends, that also seems to be when the side effects crop up with a vengeance. And this weekend they’ve been particularly rough. I’m not sleeping well because my mouth is painfully dry and sore (while Biotene claims to offer 4 hour relief from dry mouth, I get out of bed to use it every 2-3 hours). Last night’s dinner might also have been a Last Supper of sorts for me; this morning, I could barely eat applesauce. Everything tastes somehow both bland and sour, and it’s become quite difficult to chew and swallow. Oh yeah, and talk. Which makes this Sunday a good one on which to be seeing the Atlanta Symphony Orchestra perform Beethoven’s 9th. I bought the tickets well before my diagnosis as a Christmas gift for my husband. I’m hoping it will be as powerful and immersive as it was the first time I heard it performed live in Seattle, and that I manage to make it through the whole thing.

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As for heaven…

Today I received yet another card in the mail from my mother-in-law’s hairdresser, which makes this post as good a place as any to acknowledge that I haven’t gotten through this alone. Not at all. My mother-in-law’s hairdresser’s name is Angie; I’ve never met her and she lives two hours away, in the town where my husband grew up (she actually gave him his first haircut!). But, since my mother-in-law shared my diagnosis with her several months ago, I’ve received so many sweet and encouraging cards from this woman. And it hasn’t just been her. I literally cannot count the number of folks who have surfaced from so many different corners of my life to offer their support and well wishes in some way–my students, their parents, my daughter’s daycare center, my dental hygienist, my colleagues, my friends, my family, even strangers. It’s floored me, in fact. So, whenever someone comments that I seem to be handling things rather well, or that I’m brave, I’m reluctant to take much credit. It’s not hard to be brave when you’re bolstered by the love and concern of so many people, as I have been.

Reflecting on this now reminds me of when I was driving home from having my blood drawn for my first PET and CT scans, just after my initial diagnosis. I felt very terrified and alone; thoughts of death crowded my consciousness (as is common after learning that you have cancer). What about heaven, I remember thinking to myself. It just sounds too good to be true… But you could also say the same of this life.

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The road to hell is paved with unsolicited advice

…which, of course, is often well-intentioned. The cartoon below is of an exchange I had with my neighbor about two weeks after my surgery. I was still sporting a large bandage on my neck, which prompted her to ask what happened. I explained that I had been diagnosed with a rare form of salivary gland cancer, and was recovering from surgery to my tongue and neck. This opened the floodgates for a torrent of advice, along with way too many details regarding her own medical history. To be fair, I should have seen it coming. This neighbor is a bit of an oddball; she’s a woman in her sixties who lives with her mother (in her nineties) and is self-employed as a professional pet-sitter/banner-maker (is there a large demand for banners this day and age? Who are her clients? These are things I don’t know and haven’t asked). She pet-sits for our cat, in fact, and this is one reason I’ve been reluctant to press her on certain issues she’s brought up, unabashedly, in conversation.

For example, she once brought us a meal when I was home sick for two weeks with the flu and pneumonia–a kind and neighborly gesture. After thanking her profusely, I asked if she had gotten a flu shot this season. “Flu shot?!?” she asked, incredulously. “Don’t you know what they put in those things? Aborted fetuses, green monkeys. No way, no flu shots or vaccines for me. I only eat organic.” I was so flummoxed that I said nothing in response (though I was tempted to tell her that I don’t think they use pesticides on fetuses or green monkeys). So, when she recently insisted that I treat my cancer with diet and essential oils, I shouldn’t have been surprised. But I was bothered. Did I ask for her opinion? No, I did not. Over the years, I’ve found that some people are especially eager to offer health advice in certain circumstances–when you’re pregnant, for instance, or nursing, or it happens to be a Tuesday. But I haven’t found nearly as many people who are eager to receive it.

Even so, her warnings and ramblings unnerved me enough to email a college friend who’s now a doctor and ask him to reassure me that treating my cancer with conventional Western medicine was a perfectly sound choice. I particularly loved his response: “You can thank your neighbor for offering to murder you. Cancer treatment is one of the areas where Western medicine excels. Eating a healthy diet certainly doesn’t hurt, but to think supplements could treat cancer is total insanity. Gas, migraines, arthritis? Sure, try whatever you want.” Thanks, doc.

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Your changing body

This morning, I sat down with a bowl of cantaloupe and blackberries–one of my favorite breakfasts once berries come back in season–and it tasted… odd. The blackberries were good, but the melon was not. It hadn’t gone bad; it was just lacking its familiar flavor. It took me a few bites to realize that it probably wasn’t the fruit, but rather my changing tastebuds (it’s not you, it’s me). I’ve been wondering when this would start to happen with food. It’s unfortunate that it did with cantaloupe, since that’s one of the “Suggestions for Mealtime” in my radiation packet. Oh well. Another small pleasure lost.

I’ve also begun to feel fatigued from my treatments. Any time my daughter slows down enough to watch a television show, I’ll curl up next to her on the couch and be out for the count within minutes. Like, ZONKED. These naps won’t necessarily be long, but they’ll be deep. My doctors have recommended exercise to combat the fatigue, so I’ve been taking a walk every day, weather permitting. I enjoy the fresh air and time to think (which I have a lot of on my hands lately). Today, I thought about how hard it’s been for me to incorporate exercise, consistently, into my adult life. It was much easier as a kid, since I grew up playing sports. And now that I’m dealing with cancer, I’ve found myself drawing upon that aspect of my youth in unexpected ways–needing the grit and endurance athletics require you to have, I guess. Digging for something in your gut that makes you see it through, whether “it” is a grueling practice or simply walking to the end of the driveway, which was my challenge after surgery.

Having to summon this kind of fortitude again makes me regret the ways in which I’ve dismissed my body and its needs in the past, as women and working parents are, I would venture, sometimes wont to do. Now, I’m having to listen and tend to myself in ways I haven’t for a while, which is probably a good thing.

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Radiation: One week down, five to go

Today, I’m feeling better than I was. There’s a sense of accomplishment in getting over the hurdle that has been my first week of treatment. I know I still have a long way to go, but the past three months have already felt like a marathon of sorts. It’s helped tremendously to start seeing my therapist again. I first sought him out ten years ago, when I was deep in the trenches of graduate school. His office has changed location three times in the decade since then, and he’s helped me weather a number of storms over the years (postpartum depression and insomnia being a big one).

During our session yesterday, I was describing all of the strictures that have suddenly been placed on my life–the death mask, for one; the daily radiation appointment at 3pm; the host of other medical appointments that keep me bouncing from one doctor to another; the weird oral hygiene and physical therapy regimens; the temporary bans on alcohol and getting pregnant (ha! not something I necessarily want to do, but something I resent not having the choice to do), etc. But then, in the meandering course of our conversation, I realized all of the ways in which I’ve loosened up a bit, too. I’m reading four different books at once–something I never used to do. It always felt inefficient and oddly adulterous, like I was breaking a rule or something. I’m writing here in real time, when I formerly considered writing something that you labored over, privately, until you had the best possible rendition of what you wanted to say (and you had to know this, beforehand), sharing it only with a hypercritical cadre of editors and advisors. I’ve started drawing again for the first time in many years, I’ve had people over to our house even though it’s messy, and I’ve let go of certain vanities (speaking without a lisp and having a scarless neck, for example). Whatever. These things are a record of what I’ve been through–maybe even signs of an incipient transformation. It would be nice, I told my therapist yesterday (not to mention, ironic), if this experience was somehow freeing. If I could learn to sing in my chains like the sea.

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Not gonna lie…

It’s been a crappy couple of days. I don’t feel like being funny or wringing some kind of meaning out of the wet rag that has been this week. Yesterday, I broke down in the speech therapist’s office when I realized that there was a whole new set of tongue and swallowing exercises I needed to be doing to prevent dysphagia, something I’ve never heard of that sounds scary. (The past few months have been full of things I’ve never heard of that sound scary.) Also, my jawline is swollen, which might be the result of Lymphedema or the radiation; neither the speech therapist nor the radiation tech could tell me for sure. There are red hatch marks under my chin from the mask, I felt exhausted by 4pm yesterday, and I’m already waking up in the middle of the night with dry mouth. I feel like I’m not allowed to be having a bad week since I only began radiation on Monday, and it’s supposed to get considerably harder from here. But I’m having a bad week, nonetheless. Adapting, I guess. It’s all still so new and surreal. Tony was not a man of his word; I’ve had a different radiation tech every afternoon and have found them all lacking in bedside manner. They act like I should know the drill by now, and betray exasperation when I reveal that I don’t. Which direction do I lie down on the table? Tongue depressor first or mask first? There’s also music playing during my treatments that, while intended to soothe, has been unnervingly inconsistent. I realize this is a first-world problem, but I’ve found it kind of jarring to listen to playlists that range from the Spice Girls’ “Wannabe” to classical in a single session. I’m often the youngest person in the waiting room and sit there resenting this, then go back to the radiation area where all of the patients’ masks hang, freakily, on a pegboard on the wall, two of which are clearly for children (one’s decorated as Spider-Man, the other has a fuzzy tiger hood over it). And then I feel like a total jackass.