…that sometimes, they were happy. There is so much to miss re: life before quarantine that finding oneself feeling good, while in it, can come as a shock. Yesterday, for example, was the official start of my daughter’s summer and it was, well, lovely. The hours–even minutes–passed at a leisurely pace, even more so than a usual Saturday. There were no forgotten online assignments to track down; no flooded inboxes; no Brain Pop, Splash Learn, Freckle, or other inane platforms to remember and toggle between. The heat had arrived, along with the mosquitoes, but both belong here and we went outside, anyway. Meals also punctuated the day in such a welcome, ritualistic way that I took notice. Perhaps because it was exactly one year ago now that I finished radiation and found myself floundering without them. Everything I consumed then was liquid, meager, awful to taste, and painful to swallow. The fact that I can enjoy all foods again is something to celebrate, so I am by noting it here. I hope I don’t forget how I felt last night while preparing dinner–how happy and at ease, despite everything–because such moments are rare, for me and for so many others suffering, each in their own way, at this time. My daughter thundered around the living room in her gymnastics unitard, dead fucking serious about the improvised routine she was performing for no one, while my husband folded laundry to a delightfully random playlist of his choosing–Curtis Mayfield, Procol Harum, the Beatles–and I thought, yes. This is it. This is everything.
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.
Radiation: 3 weeks out
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.
Healing is hard work, cont’d.
I haven’t written in a while because I’ve been waiting for “news” to report. That is to say, some kind of change or improvement. There has been change and, I suppose, modest improvement. The sores on my tongue and the walls of my mouth have more or less healed, and the pain I felt in my throat when I swallowed has migrated to my right ear. In fact, that’s pretty much the only pain I feel anymore and it’s lessening, little by little, each day. This is most fortunate, considering the fact that I’ve been weaning off of Oxycodone over the past week. Next week, I will be weaning off of Gabapentin, but supplementing all the while with Advil and Tylenol. I also feel my energy returning, but slowly and in small increments. A single outing or errand will still wear me out more than it ever used to.
I think the next challenge in my healing process will probably be figuring out food. My last actual meal was on April 14, which I know thanks to this blog. I’ve been on a liquid diet for forty-four days now, and a limited one, at that. Given the changes to my taste buds, the only things I’ve found tolerable over the past month-and-a-half have been water, Ensure, butternut squash soup, drinkable yogurt, and vanilla milkshakes. That’s it. That’s what I have every. single. day. At the behest of my speech therapist, I will try a bite of something else here and there (applesauce, mashed potatoes, cottage cheese, other soups, etc.), but these either taste terrible, or I can’t manage to swallow them. My natural saliva production, which I’ve learned helps break down food as you chew, has gone completely haywire, and food will simply get stuck to my teeth, tongue, or the roof of my mouth, causing pain and discomfort. It’s really very frustrating. So, I stick with what I know works because my body needs calories to heal.
Much like a recovering alcoholic, I’ve started to realize how heavily our social rituals revolve around food and drink. It’s hard when you can’t participate, and a little lonely. But it’s not the end of the world. And, in my case, it’s hopefully temporary. I just wish I knew when I’ll be able to eat again. No one has told me, and I can’t find it in the two other MASC blogs I’ve located on the internet. It’s hard to continue to be patient, and to live with uncertainty. That’s pretty much the crux of this entire ordeal, in fact, from my diagnosis right up until now. A serious illness pulls the rug of certainty out from under you, and it’s difficult to regain your footing. I still have my sea legs, I guess, and might for a while.
Blech, cont’d.
This morning, I told my husband that I feel like the penultimate episode of Game of Thrones (which he watches, but I don’t) took place in my mouth.
Blech
The past week has been ROUGH. My pain has escalated with each day since radiation ended. Mornings are the worst, but, once I visit what feels like our in-house pharmacy, things improve ever so slightly. That said, I miss not being on a slew of medications. I miss eating normal food. I miss my daughter, who’s spending the week with her grandparents because my doctors warned me that I’d be feeling terrible directly following treatment (and they were right). In short, I miss being a person who’s not dealing with cancer. But, if I have to be someone that is, I’m actually grateful it’s this person. The person writing and sketching and making an effort here and elsewhere. The person who got through it–at least, the first part–with grit, if not grace.
Side effects may include…
While perusing my radiation packet a few months ago, I saw that a likely side effect of treating the mouth was “thick, ropy saliva.” As with so many other things I read or was told before I began treatment, I laughed (among them, my surgeon warning me that I would probably lose 15-20 lbs.). But here I am in my last week of radiation, with saliva so thick and ropy you could use it to rig a ship. Seeing is believing.
The home stretch
Things really took a nosedive this week. When I saw my radiation oncologist after my treatment on Tuesday, she said it was time to pull out the big guns–namely, Oxycodone. “You want to stay ahead of the pain during these last two weeks,” she explained. I was wary, as I’d experienced some unpleasant side effects from opioids before (mostly severe nausea), but acquiesced. Then, like clockwork, after my second dose of Oxy yesterday, I felt immediately faint, feverish, and dizzy. I broke into a cold sweat and had to lie down on the couch. Dry heaves followed shortly thereafter (I don’t have a whole lot in my system these days).
Unfortunately, conditions did not improve. When I went to my radiation appointment in the afternoon, I looked and felt awful. My radiation tech noticed immediately, and said we’d go back to consult with the nurse after my treatment. She also acknowledged that I’ve been doing really great so far, commenting that many people look and feel the way I did much earlier in the course of their treatment. This was an odd consolation, but I was willing to take it. When we later met with the nurse, she confirmed that everything I was experiencing was pretty normal at this stage of the game, and was likely to get still worse (not exactly what you want to hear when you feel like you might pass out in your chair). She decided to schedule me for my first infusion, which was earlier today.
This ended up being the first time since my surgery that I’ve actually felt like a cancer patient (which is to say, weak, awful, and exhausted). The hospital’s “infusion center” is a startlingly crowded ward of little, curtained IV stations. I sat in my designated recliner, bracing myself for one of the things I’ve come to dread most: nurses trying to find a vein. I’ve inherited notoriously small, deep, hidden veins from my mother, and it’s always a challenge for someone drawing blood or sticking me for anything else to find them.
Apparently, the anxiety surrounding this relatively routine procedure, combined with my general fatigue and depletion from radiation, was enough to trigger my second episode of what I’ve now learned is an actual condition: Vasovagal syncope. As soon as the nurse inserted the IV (which she was able to do on the first try), I became faint, dizzy, and nauseous. I passed out briefly, and came back to with a violent fit of vomiting. This also happened a few months ago, when my surgeon was taking out the stitches in my neck. He thought I was having a minor seizure. Because I barfed all over the front of my own shirt, I had to throw it in the bio-waste bin and leave his office in an open-backed hospital gown and jeans. I received some strange looks in the elevator, and one guy even asked if I was making my escape.
Thankfully, that didn’t happen today (the barfing on my own shirt part, anyway). I did throw up, but the nurse had a bag at the ready when I told her I struggled with needles. She was patient and kind, which helped calm me considerably. I sat for an hour, getting a simple saline drip to replenish the fluids my body has steadily lost over the past few weeks. They also threw some morphine and Zofran into the mix, so I was like a groggy zombie by the time we left.
Now, several hours later and the afternoon’s radiation appointment behind me, I’m feeling *slightly* better. Baby steps, just like Bob.
I miss food, cont’d.
If you haven’t seen the deeply depressing film by Lars von Trier, then this cartoon won’t make much sense. But when my husband said this the other night at dinner, I laughed so hard it hurt.
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.
Well, then 