To the Pain!

Soon after my cancer diagnosis, our local theater offered up a free showing of the gilded fantasy, The Princess Bride. I probably watched the film a dozen times in my 20s and 30s, but not for quite a while. A few scenes carried a bit more juice than I expected, as I sat in the darkened theatre, my wife on one side, daughters on the other, mulling the ramifications of my expanding left tonsil. Inigo Montoya describing his alcohol-fueled dissolution after losing his father as a child was rather a kick to the knees. I don’t want my daughters turning to the bottle if this treatment fails! Then there was the torture scene, in which our dapper hero, Westley, is strapped down to The Machine:

I found this quite uncomfortable to watch. Quite. Was this to be my fate?

It’s natural to equate a course of cancer therapy to an encounter with medieval torture. Not all are awful, of course; sometimes, surgery is the primary treatment, plus or minus some localized radiation, which can be tolerated quite well. Some luckier souls get by with a few radioactive pellets in the prostate, or an immunotherapy that often causes but few serious side effects. Not so for those of us with a good-sized tumor in the mouth, though. The chemotherapy agent of choice (cisplatin) is notorious for causing mucositis, a painful ulceration of the lining of the mouth; as is the radiation therapy that is the mainstay of treatment. Put them together, and almost no one escapes this treatment without severe oral pain. This is the sort of pain that can wake you up at night, or cause you to wince while quietly watching a movie, but it’s especially harsh on certain useful bodily functions, like speaking, chewing, and swallowing.

The half-dozen or so oral cancer patients I spoke with before embarking on this journey had varied tales to tell, but the experience was easy for none. All but one ended up using a PEG tube (short for “Percutaneous Endoscopic Gastrostomy”) for feeding, as eating became too painful, hence the need to push puréed foods straight into the stomach. The one who didn’t wished she had, recounting a misery of lidocaine gargles before gulping down smoothies. My radiation oncologist understood my desire to avoid a PEG — ostensibly to avoid atrophy of the swallowing muscles, but also out of some weird place of “God made me without any bits of plastic sticking out of my body and I intend to keep it that way” — but pressed me on this issue. While some studies report that only 30% or so of people undergoing this therapy require a PEG, he estimated the odds at more like 60% given the broad swath of radiation he would be required to beam into my super-sized tonsil and tongue. Interestingly, and perhaps unsurprisingly at an institution that rather encourages the use of PEG tubes, my team was generally surprised to see me, week after week, sans PEG. I hear things like, “Wow, are you sure you don’t want any IV fluids while you’re here?” — the implication being that it must be getting hard just to force down enough fluids, not to mention food. My nutritionist was hard pressed to think of examples of PEG-less patients who successfully had made it through.

Again, I think some of this is institutional. I gather that MD Anderson, for example, prioritizes avoiding a PEG, and was told that a majority of their patients get by without. I can just say that from a patient’s perspective, I felt like the heat was on, once the mucositis started up during week 3 of treatment, and I opted to turn down my PEG tube placement that had been pre-scheduled. I had accepted the oncologic metaphor for Westley’s offer to duel rival Humperdinck “to the pain.” I was in for it now, committed to eating and drinking enough to stay out of the hospital — to the pain.

Painful, it has been.

Strangely, though, it has not been consistently so. The initial mucositis pain was awful. Moving my tongue — a sad necessity while eating — sent waves of pain through me. I have also observed that, through an unusual failure of evolution, the soft, vulnerable tongue is placed in close proximity to several dozen exceedingly hard teeth. Swallowing anything with texture, even the mashed potatoes my wife had lovingly made for me out of countless tiny fingerlings, was akin to eating a wire brush. I might call those pains a “7 out of 10” or so, but it was enough to bring a damp sweat out over my entire scalp. This has continued whenever the mucositis stirs up; meals are accompanied by sweats. An analogy I can offer is when I used to frequent Indian restaurants, and would ask them to heat the foods as if I were a family member, how the hot pepper heat would build up working through a dish until it was almost unbearable, and certainly sweaty, and requiring yoghurt raita and a little time to release the pain.

The other analogy, perhaps more apt, harkens to the two times I have crashed on my mountain bike and caused substantial road rash over most of my right thigh and hip. The need to clean impacted bits of dirt and gravel out my wound to avoid a bad outcome (infection) was obvious and compelling. However, the act of doing so would trigger genuine 9 out of 10 pain. (Note: it’s been the worst pain of my life, but I always reserve the 10 on a pain scale for women in childbirth, who earn the rights to that number; if I claimed 10, I would have to cede them the “11” from Nigel Tufnel’s amp in Spinal Tap). Actual, uncontrollable, moaning-out-loud pain. Don’t want the pain? Stop cleaning the wound. Don’t want the infection? Accept the pain. The short story is that my pacing could have been crisper in cleaning out my wounds; and the same could be said of my meals now.

The other day, a homemade smoothie with the cardinal sin of having a slightly underripe banana within caused a harsh burn with every swallow. I nursed a few swallows over the 20 minute drive from the hospital. I hemmed. I hawed. I almost punted to the fallback travel option, a neatly packaged, ultra-smooth Orgain shake, but decided to get through the unprocessed smoothie instead. My approach? Set a timer to 7 minutes, take 10 quick swallows, swish out my mouth with my trusty salt-and-baking-soda rinse, and take another 10 swallows when the clock ticks off another minute. It worked — I was done with a minute to spare. Plenty of sweat resulted, and any chemo-fatigue I thought I had when I walked in the door had been wiped out. Without some trigger to my competitive nature, I tend to dawdle over a painful meal. Really dawdle. Remember stuff I need to do mid-meal. Check my self-care checklist a couple times. Turn on some football. Anything but eat in a timely fashion.

I’m aware this all sounds pretty dire. The reality is not so bad. Last week I had a run of over a week during which the oral pain really dialed back to a tolerable level. Then I saw my radiation oncologist, and inquired if this was quite unusual. He brushed off my hopeful suggestion that perhaps all my licorice tea was calming the mucositis, or I was the happy recipient of some benevolent miracle from the Chemo Gods. No, he informed me; these up and down cycles are not unusual, but, “it will get worse. It always gets worse.” Sure enough, by nightfall my pain was on the upswing, finally even waking me up at night by this past Monday night, and a few tough days followed. Hot sweats dogged me while trying to eat, and the sheer volume of oozed saliva from my denuding palate astounded me. In fact, at one point, when swallowing saliva grew quite uncomfortable, I was on a walk and decided to start spitting out all the excess (please forgive my vulgar manners in this context). I quickly realized that I would need to seriously increase my fluid consumption or risk dehydration — neither an acceptable option, so my manners restored themselves.

Thankfully, as these things go, my mucositis settled down again in a week, even more unexpectedly. I’ve slept brilliantly the last three nights. The feverish, cytokine-fueled dreams have left for the moment. My last few meals have included homemade pizza, quesadillas, and scrambled eggs with pesto (garlic-free, of course). No sweating.

I can’t really explain this latest deliverance. Below is what my mouth looks like at the moment (people easily disgusted by medical photos, it’s a good time to scroll down):

How does that not hurt when I eat? I don’t know. But I do know three things.

One: the big tumor where my left tonsil once resided ain’t what it used to be. In fact, even with a tongue depressor (or, 3000 miles from my clinic, a butter knife), I can’t find it. My tongue no longer tilts up at a 60 degree angle from the tumor at its left base. Even my trismus — the inability to open up my mouth fully, which was my original clue that there was something rotten in the state of Denmark — has finally started to improve.

Two: I am not going to ask my radiation oncologist about it. I’ve had enough of his predictions.

Three: Much as I have inclined to the use of the word “torture” in describing this process, it most certainly is not torture. Torture involves the deliberate attempt of one being to inflict pain and suffering on another. In this process, some two dozen health professionals have provided care for me, and all have shown concern and compassion for my suffering. Schemes are drawn up to alleviate my every complaint. I cannot imagine the brutality of this treatment without the gift of a deep understanding that no one wants me to suffer more than I must through this time. In truth, my suffering to this point has been far less than I can bear.

To the cure, then, I will gamely carry on.