A new cartoon series
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.
Some dark humor on a bright day
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.
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.
Waiting room doodles
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).
Backtracking
I’m a high school English teacher by day (crime and cancer fighter by night), and I kept my diagnosis under wraps for about two months before telling my students. I didn’t want to disrupt their already teeming teenage lives, and I was still waiting on some important information from my doctors (scan results, surgery dates, a treatment plan, etc.). I can’t say that it was easy crawling into bed each night with this little behemoth, which I had assigned to my seniors, but the humor wasn’t lost on me, either.
Not sure I’m in on the joke…
According to Google, a tagline is “a catchphrase or slogan, especially as used in advertising, or the punchline of a joke.” I’ve always sort of assumed that humanity, itself, is the punchline of a joke we didn’t quite catch the beginning of. I feel that way today, anyhow. This afternoon, I have to get an ultrasound of my thyroid because the lymph nodes my doctor excised during surgery had thyroid cells, or tissue, in them. He said that this was highly unusual, and added that thyroid cancer is one of the most treatable forms.
Wait a minute… Are you telling me that I might have thyroid cancer in addition to salivary gland cancer? I couldn’t exactly digest that, so I’ve been sitting with the possibility (like so many other things) since he mentioned it in his post-surgery follow-up call. Needless to say, I’m not looking forward to having someone mess around with my neck while the scar from my surgery one month ago, today, still looks like a fresh incision. Here’s hoping the nurse or tech that performs the ultrasound is sensitive to this. (Note: I will say that most of the medical professionals who have been involved with my care thus far have been wonderful humans, with the exception of a resident who YANKED, forcefully and without warning, on the drain that was inserted into my neck after surgery).
Today’s ultrasound calls to mind the last time I had one, five years ago, while pregnant with my daughter. It induced some anxiety, as well (is everything ok? is she growing normally?), but joy and anticipation were also thrown into the mix, so it was more than bearable. Now, I only feel dread. Bodies are curious things. Mercurial, idiosyncratic. At least mine seems to be. I try to remind myself of those times when it did everything just as it should, competently and correctly. When I gaped in awe of it, like during labor and delivery. I’m aware that the dichotomy my language is invoking (i.e. “it” and “my body” vs. “me”) is both historically entrenched and problematic. Ostensibly, it’s all the same stuff. But illness seems to invite the distinction. Like I’m trying to cordon off a part of me that’s still well. Inviolable. I know it’s not, but I’m beginning to understand that knowledge and need are very different things.
Well, then 