At what point did I stop thinking and saying, “I have cancer,” and start to say, “I had cancer”? I feel as though I am still between the two, in a zone of uncertainty because at any time I could slide back from the second state into the first, my cancer having recurred. But if I measure the reality of cancer by how indifferent I was last year to things that interest the majority of people, by my remoteness from world events of that time, and measure the unreality of cancer by the anger those events provoke in me again, by the mostly futile preoccupations I engage in anew, and the stretch of future that I have granted myself by buying a five-year warranty on a dishwasher, for example, then I can say, “I had cancer.”
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.
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.
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.
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.
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.
I confess to having thought this just after I received my cancer diagnosis, when the future suddenly seemed no longer a given. This weekend, we celebrated my daughter’s 5th birthday and man, did I relish it. I might be losing my sense of taste soon (radiation begins tomorrow), but life has never had a sweeter savor… All the cliches you hear are true, damn them.
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.
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).
I finally came up with a tagline! Isn’t that enough for one day? Unfortunately, no. I also have to visit the dentist (incidentally, where all of this began), and continue awaiting that phone call re: my thyroid ultrasound. Like most people, I don’t enjoy the dentist. It’s mostly the noises their tools make, although I do relish the soft rock/easy listening music it’s so often paired with.
In related news, a friend recently asked how my MASC was diagnosed, and I figured I should share that, here. This past summer, my dentist fitted me for a bite guard because I grind my teeth at night, and something about the way I moved my tongue after inserting the guard caused me to feel a small, firm lump on its underside. It didn’t hurt or bother me in any way–I only noticed it when making certain movements with my tongue that I don’t ordinarily make (sticking it way out, for example. Are you pleased, dear reader, to find that, as a thirty-nine-year-old, I don’t regularly stick my tongue out at people? You should be). So, I told my husband and asked if he thought it was anything to be concerned about. He said probably not, but I should check back with the dentist, anyway.
Fast forward a month or two from that, and I finally drag myself into the dentist’s office, unscheduled, to ask if he could take a quick look at my tongue. He graciously agreed to, poked and prodded a bit, then sent me away with a referral to an oral surgeon to have it biopsied. It didn’t look like other oral cancers he had seen, he assured me, but it’s better to be safe than sorry.
It wasn’t until a few months after that visit that I actually had the biopsy (work and holidays threw a wrench in things), which came back as positive for mammary analogue secretory carcinoma. The doctor who shared this news with me was extraordinarily gifted at doing so; she pulled her wheelie stool close to my chair, leaned forward, looked me directly in the eyes, and confessed to being as pained and shocked by it as I was. I remain grateful for (and a little in awe of) her forthrightness and compassion. She then referred me to my surgical oncologist, and here we are, a little over a month out from my operation.
I am nervous about the next steps; I meet with my radiation team for the first time this week (and will report back here), but I’m trying not to let my mind get ahead of me. “Suffer once,” my therapist wisely advised. Today, I feel good and am thankful.
Well, then 