Category: Radiation

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Brave New World

The other day, I attempted to log into a medical website to retrieve some lab results. I hadn’t been on the site in quite some time, so I found myself cycling through a number of usernames and passwords before I was finally prompted to answer the inevitable series of security questions. One being, “At which of the following addresses have you never lived?” I stared at the list of street names and numbers like a student taking a particularly vexing multiple choice test. Suddenly, my itinerant twenties flashed before my eyes, simultaneously vivid and vague. There were kitchens the size of closets; plaster walls I had illegally painted; the coin-operated washing machine in need of an exorcism; a back door that jammed every time I let my roommate’s dog out (god, how I hated living with that animal); the set of dishes I’d bought with my first live-in boyfriend; musty foyers and musical street sounds–all of these things conjured, in heady detail, by a simple list of names and numbers. And yet… Had I ever lived on Ramsay Ave., I wondered. If so, is it really possible to have forgotten such things already? My grasp of my own history felt suddenly tenuous. Where did LabCorp get this information, all of which pertained to years long before I’d become a patient in its system? More disturbingly, why did it seem to recall what I could not? I sensed a strange transfer of authority at work in all this, from myself as the repository of my own life and history to this other interface–an interface we now associate with untold hoards of data and memory, like some medieval dragon jealously guarding its treasure. I continued to mull over these questions after I’d finally accessed my results (which, thankfully, were normal, but unrelated to my cancer), before arriving at a different one: Is it a gift to have lived long enough to forget these things–namely, where one lived, and when, and with whom? Is it not a sign of life’s marvelous density, and/or of forgetting as a kind of mercy? I’m not sure such questions would have occurred to me before this past year–before cancer.

A few days later, I found myself reading The New Yorker on my phone, and was stopped in my tracks (or, rather, scroll) by an ad that had popped up mid-article. Usually, I find these noisome and utterly off-base (I’ve never been in the market for a neon hunting vest), but this one hit eerily close to home. It was an ad for wigs. I caught my breath. Again, I found myself wondering, what does the The New Yorker’s algorithm know that I don’t? Can my phone sniff out cancer like those specially trained dogs? Is this ad somehow prescient–is chemo in my near future? It took a while to walk myself back from the ledge of panic that this hardly innocuous little plug induced. I reminded myself that I frequently access this blog on my phone–in addition to searching for information about my particular kind of cancer–so it’s not altogether improbable that I would be targeted for such ads by marketers. And, of course, I’ve heard the stories of women who’ve received ads for maternity products before they’d even told family and friends they were pregnant. But that doesn’t change the eeriness of the experience. It dislodges one, somehow, from the locus of the self, and suggests that the self is, perhaps, a scattered collection of loci, to which many lay claim (LabCorp and Best Wig Outlet, apparently, among them). There is the me who has cancer now, just as there is the me who lived on NW 23rd St., years ago, cancer-free. The desire for some kind of cohesiveness, in the face of such fracturing, makes sense and has only grown stronger (in me, anyway).

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Things you have to learn after cancer…

Now that school and fall are in full swing, I’ve had my first bouts of a cold, cough, etc. Last week, I also experienced some excruciating lower back pain. After consulting with my general practitioner, we concluded that I’d probably strained a muscle while exercising but, initially, I was convinced that I’d developed a tumor. Yep, I thought my cancer had metastasized, overnight, into my lower back. While not everyone who has received an unexpected cancer diagnosis necessarily thinks this way (i.e. in paranoid extremes), my guess is that some of us do. And part of the process of healing after treatment, at least for me, means not jumping to the worst possible conclusion each time some new symptom pops up. I don’t know why it never occurred to me before, but, in the next five years as I’m working toward remission, of course I’m going to get sick. And those (hopefully, minor) illnesses will likely be unrelated to my cancer. This is just something I’ll have to be mindful of moving forward, so I thought I’d note it here.

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Cancer’s weird consolations

This evening, I got my first haircut since February. My hair is fine and grows slowly, so I don’t get it cut that often. The last time I went to the same salon, I took off several inches in preparation for my surgery. My doctor told me that I wouldn’t be able to shower or get my incision wet for a few weeks afterwards, so I wanted something simple and low-maintenance. Tonight, I stared at the person looking back at me in the large mirror, strangely skeptical that it was the same one who sat in the same chair seven months ago. It’s funny how we can meet ourselves again and again in life. After certain things, in anticipation of others… The face in the mirror looked a little different, but what I felt was uncannily the same: fear.

It rises in me at regular intervals now, then recedes, like a tide. My first CT scan last Friday went surprisingly well until it didn’t. The nurse who stuck me for the contrast dye IV was incredibly kind and reassuring. She found my vein on the first try and, because it was only a scan of my head and neck, I didn’t have to drink that awful barium sulfate solution. My time in the machine only lasted about seven minutes, and my mantra had been well-rehearsed. Two hours later, my husband and I were back in the surgical oncologist’s office to go over the results. The nurse practitioner who met with us said that she’d looked over the images and didn’t see anything concerning. “We’re still waiting for the radiologist’s final report,” she explained, “but I think you should be good to come back in six months for your next scan.”

I felt profoundly relieved and dove into the pleasures of a three day weekend headfirst. Then, on Tuesday afternoon, I received the official report from the radiologist via my patient portal. Apparently, there was something concerning. An irregular lymph node in my neck that will need to be more closely monitored. I have to go back for yet another CT scan in three months instead of six.

This news settled hard, to the extent that it settled at all. I asked my doctor for more information; she responded that it is possible I just have an oddly shaped lymph node and, if there are no changes to it in three months, we can assume things are fine. But I’m still reeling from the last time I thought things were fine, and then they weren’t. I suppose this is the new normal, but damn, do I miss the old one.

As I’ve tried to wrap my head around this latest uncertainty–as I’ve moved through a range of emotions from shock to fear to rage to even, at times, forgetting–the consolation that has come to me is an odd one (unless, that is, you have cancer, or something like it). When I began worrying how I would get through the next three months of life and work without letting my pending scan–much less, what might be happening inside my body–weigh so heavily upon me that I might not be able to function, or when I felt sheer anger that I couldn’t have a measly six months out from under cancer’s shadow, I suddenly wondered why I was assuming I had those three months until my next scan at all. To most, this would seem an incredibly morbid thought, but, to me, it was a comfort. I don’t really know how to explain it, but when I first received my diagnosis (and little other information), and feared I might be dying as I drove home from having my blood drawn that day, it occurred to me that I could also die in a car accident at any time. And this offered the strangest sense of relief. I guess simply realizing that I still didn’t know, that all was as uncertain as it had ever been, created some space for hope. Which, though small, is where I’m trying to live for the better part of each day.

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The postmodern poetry of pathology reports

For a time now, I’ve been able to put cancer behind me. I’m doing–and thinking about–other things. But this Friday, I have my first post-treatment CT scan, and it’s looming large on the horizon. I keep rehearsing the afternoon’s appointment in my head by recalling how things went down the first time. Drinking that awful barium sulfate solution, alone, in a freezing cold room; the brisk manner of nurses and lab techs; lying on yet another narrow table; feeling the contrast dye saturate my veins; repeating the mantra I said to myself, before, as the machine pivoted around me: My body is a dark city, my body is a dark city. Like London during the blackouts of WWII, I don’t want it to light up. (Obviously, my understanding of how these things work is vague, but I believe the radiologists are looking for some kind of “activity”–for cancer cells to react to the chemicals coursing through my body by luminescing.)

For some reason, my mind also keeps going back to my initial pathology report. I don’t know why doctors give these to patients; mine consisted of a dense paragraph of medical jargon followed by this stand-alone sentence, in all caps:

THE LESION IS MALIGNANT.

Reading it felt like the closest I might ever come to visiting an oracle. But what seemed, at the time, like a fixed decree–an intractable fate–has since revealed itself to be a bit more pliant. Much can still be done in the wake of such things; choices can still be made. Which may be why I’ve been questioning some of my own lately. Small ones, like becoming irritated in traffic, or with the endless stream of students filing into my classroom to borrow my stapler this morning. Do I, alone, have the earth’s last functioning stapler, I wondered. And then I took a deep breath, a proverbial step back. I do a lot of that now. Trying to notice how I’m responding to certain things and why. Trying to hold onto the perspective that the past nine months has brought, though it was dearly purchased (does perspective ever come cheaply?). Is this worth the worry or frustration it’s causing me? Can I let it go? We all have so many heavy things to carry. Friday’s appointment is one of mine.

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In light of recent events

My daughter started kindergarten at her local public school this week. To pick her up in the afternoon, I have to buzz the office so that they can unlock the front doors and let me in the building. Once I’m inside, I cannot walk to the gym or playground or art room to fetch my daughter from after-care. A staff member has to escort her to the front office, where I wait, peeking through the window, like someone visiting a prison inmate. Yesterday afternoon, she was disappointed that I had come to pick her up so early; she wanted to go back out to the playground for just five or ten more minutes. “Pleeeeaaase!?” When I asked the receptionist at the front desk if I could accompany her back outside for a little while, I was told that I could not “because of the other kids out there.” I felt surprised, stung, even insulted, but acquiesced. As a teacher, myself, I understand that these are the more or less reasonable precautions our schools now take to protect children from the increasingly unreasonable world in which we all live. 

Earlier the same day, in fact, I had completed a lengthy online training course ostensibly designed to help me respond to an active shooter situation, should one arise at my own school. It left me feeling afraid, numb, desperate, anxious and depressed. A second required active shooter training is scheduled for later this week. I dread it already. Front-loading our faculty in-service week with this kind of thing casts a pall over the year to come in a way I never experienced when I began my teaching career sixteen years ago. Already, I can anticipate a likely response: Things change; we must adapt. To which I reply, you’re right. Things do change. Why don’t we adapt our fucking gun laws?

Needless to say, I believe there are better ways to address this dire–and mounting–problem. The strategies implemented by our educational institutions seem to be, by and large, defensive ones. We’ve put up gates and locked them, we’ve installed cameras everywhere, easy entry to our buildings is barred, we’ve increased the number of armed security and police officers, we’re training our teachers and students to Alert! Lockdown! Inform! Retaliate! Evacuate! Subdue! Distract! Or any number of other acronym-ready imperatives. And these initiatives have not been without cost. Someone is–indeed, many are–profiting from them. We have clearly been sold on this as the solution, but I wonder if it might not, ultimately, compound the problem.

What kind of emotional and psychological climate are these quasi-militant protocols creating for the children and adults who spend the better part of their days in schools? What are they teaching us to believe and expect about the world, and about one another? Are they not normalizing the threat of violence? Worse yet, mightn’t they be fomenting it?

Not being able to enter my daughter’s elementary school; not being able to go see her, her peers, and her teachers as they participate in its daily life; not being able to get to know this new community to which I thought I belonged, is profoundly sad and strange. What do I feel when I buzz the ringer by the locked front doors of a public building, or wait in its office? Criminal, though I have done nothing. I feel alienated, suspect, and eager to leave. More importantly, as our children witness us go through these increasingly rote motions of caution and precaution, what do they feel? How do they internalize the glaring paradoxes of their environment? Why should they keep coming to a place that explicitly concedes, through all of these alarming new safety measures, that it isn’t, in fact, safe?

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It’s the strangest thing…

I’m now seven weeks out from radiation, and can happily report that much has improved. I can eat almost anything I like, with the exception of some meats. My energy is back, and I’m not in any physical pain. But emotionally, I’ve struggled. Life has felt oddly amorphous as I’ve healed. Rejoining the land of the living/well was more of a difficult transition than I thought it would be. Kind of like a war veteran readjusting to civilian life, but not. I miss being surrounded by others who are experiencing something similar to what I’m going through, or have gone through (i.e., the quiet confederacy of medical waiting rooms). I miss the myopic focus that illness induces–its consuming totality. I’ll even admit, with no small amount of shame and surprise, that I miss the attention that comes with it from everybody else. These are not things I anticipated feeling once I was on the other side of this. In fact, I naively thought that, if I was lucky enough to get to the other side of this, I would never have a bad day again. I would just feel so damn grateful to be alive, eating, and well, that there wouldn’t be room for any other emotions (particularly, negative ones).

But feelings, even gratitude, even joy, even (thank god) excruciating pain, move in and out like weather. And it has been this–the incessant changes to my body and outlook over the past six months–that has proven the most difficult to navigate. In December, I thought I might be dying. In May, I was granted a stay of execution. The time in-between was like nothing I’d experienced before. No wonder that, in returning to “normalcy”, I feel like a stranger, or interloper, in a place that was once quite familiar.

It’s hard for me to explain, but Katharine Smyth gets at this with astounding precision in her memoir, All the Lives We Ever Lived. Virginia Woolf, she writes, makes “a serious argument for how illness separates us from the healthy, whom she calls ‘the army of the upright’, and how, for the invalid, ‘the whole landscape of life lies remote and fair, like the shore seen from a ship far out at sea.’ […] It must be so difficult to bid farewell to one’s secret world of illness, and perhaps more difficult still to reclaim and trust in one’s new place among the living.” Indeed.

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Or maybe…

I’ll lean right the fuck into it. The future, that is. I’ve had a profoundly reassuring week, and I figure I should share the good news here, just as I have the bad. On Wednesday, I saw my surgical oncologist for the first time since he removed the stitches from my neck in February (and well before I began radiation). He said I looked great–that everything was healing wonderfully. Personally, I think anyone who’s not barfing all over themselves–which I was the last time we met–would get as favorable a review. But this was a relief to hear, nonetheless. I then asked him if my prognosis was good, and he told me I was in the best possible position I could be in with respect to that: the remaining tumor he’d removed from my tongue was small, my lymph nodes had been clear of cancer, and they staged it at I. “You can relax and enjoy your summer now,” he said. “The hard part is behind you.”

Hearing this was like a benediction. They’ll still continue to monitor me via CT scans of my head and neck for the next five years, of course, but there’s good reason to believe I just might be alright. The doctor then asked if I wanted a referral to a plastic surgeon to see if they might be able to laser off the long scar on the side of my neck. “I know it can make people self-conscious,” he explained. I declined. I’m strangely proud of it. As I read the other night in the knock-your-socks-off memoir, All the Lives We Ever Lived: Seeking Solace in Virginia Woolf by Katharine Smyth: “We are each of us circumscribed within a body, the shape of which, the scars on which, the holes within which, tell our tale if you care to read it.” I actually now have two scars on my neck, the one from my recent lymph node excision and another, fainter one, across the base of my throat from a partial thyroidectomy I had at age twenty-one. My daughter likes to trace her finger over them when she’s lying in my lap. It looks like I survived the guillotine or something. Twice.

Then today, I saw my speech therapist, who also gave me a good report. She observed me chew and swallow a few sample foods they keep on hand (the graham cracker was a challenge), and said she was impressed with my progress. She encouraged me to continue doing my weird tongue exercises, as latent complications from the radiation can occur as long as five or ten years down the road. So I figure I’ll try to do them when I’m driving and give anyone who happens to pull up next to me a good laugh.

When I got in the car to head home after this appointment, I cried. The weather outside was so fittingly, beautifully bright it seemed staged. I still feel the clench of fear in my gut when I think of everything I’ve been through (and will continue to go through in the coming months and years), but I’d like to give myself permission, as my doctor did, to feel joy a little more fully, too. I’ve always been frugal with this emotion, bearing (stupidly, constantly) in mind a line from Faulkner’s Absalom, Absalom! claiming that the minute you let down your guard is “the instant which Fate always picks out to blackjack you.” But what else is there to do, really? The house always wins, and yet you have to play. That’s the rub.

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Turning the corner

Well folks, I’m using a fork again. And not just on my hair. Over the past few days I’ve had some solid foods. They’ve had to be moist ( a god-awful word, I know) because my mouth is still very dry and my saliva is pasty (perhaps an even worse word). I can only manage a few bites, not an entire meal, but this is progress given where I was a week ago. I’ve found some success with watermelon, over easy eggs, well dressed salad (romaine lettuce only), tzatziki yogurt, peaches… In short, anything with a high water content that sort of salivates for you (man, do I feel sorry for my readers who are not, themselves, recovering from oral radiation. These past few posts must be a total bore. If I happen to have any readers who are recovering from oral radiation, take heart. Things do improve, albeit gradually). I’d say food tastes about 70% the way it used to. Chewing and swallowing remain slow and effortful, so eating still isn’t really a source of pleasure. But I’m beginning to believe it might be again someday…

It’s funny, I have a newfound wariness of that word (i.e., someday). Of the future in general, really. I don’t know whether I can lean into it fully–whether it will support me. So much of what I used to to take for granted has become a big IF… If the treatment worked… If my next scans are clear… It’s hard to inhabit the conditional and contingent, despite the fact that this is where we always already are. I’m treading lightly, I guess you could say, my heart a kind of rookery where the birds are liable to startle and take flight at any minute. A tall drink is definitely in order.

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Radiation: 3 weeks out

The glory of a month free of radiation.

Today marks three full weeks since I completed radiation. My doctors have said that recovery usually takes about six weeks, so I’m halfway there. The most marked change I’ve noticed is in my energy level. I now feel pretty much back to normal in that respect. I’ve resumed my walks, and feel comfortable being out and about. I think weaning off of my pain medications has helped me feel less fatigued and drowsy (not to mention, allowed me to drive again). Speaking at length is still difficult, which concerns me given the fact that I’m due back in the classroom in August. But hopefully, that will continue to improve, along with my enunciation.

The main side effect that remains unchanged is my diet. While the flavor of some foods is gradually returning, my ability to chew and swallow them has not. So I’m still on liquids. The same liquids. Like my surgeon and radiation oncologist predicted, I’ve lost twenty-two pounds since all this began. It’s actually becoming a concern, as an unexpected–but, oddly convenient–corollary of radiation is a loss of appetite. I don’t really feel hungry any more. Meals (and I use the term loosely) are something I make myself have; they’re not something I want. In a way, this is a bit of a blessing. It would be a torment to sit down with my family at dinner and find myself craving what they were eating, but I don’t. The challenge now is making sure I get enough calories to continue to heal and have energy given this odd indifference towards food.

And it is odd. For as long as I can remember, eating has always been associated with very strong emotions–desire, anticipation, pleasure, anxiety, satiety, belonging, frustration, disappointment, loneliness, discovery. It has never been a source of apathy. As with most things I’ve experienced since my diagnosis, this altered relationship to something so fundamental has been double-edged. On the one hand, it’s surprisingly freeing. I’m doing more with a lot less. There’s some time and psychological space that’s opened up where food used to be. I see that, perhaps, the ascetics were onto something. But I also mourn its loss, its familiarity, its rituals. Again, temporarily. I’ve been told that my appetite and ability to eat will return again at some point. I just don’t know when.