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Nemesis

My never-ending rotation of side effects presents a new combination of villains every day. It’s like a new Avengers movie every time I wake. This past week’s nemesis has had a common denominator among the cast of bad guys — a new nemesis: phlegm.

When one’s neck is exposed to intense, daily, DNA-disrupting levels of targeted radiation to kill a malignant tumor, one of the major side effects is that one’s phlegm-factory goes into overdrive. In a healthy person, the normal amount of phlegm just goes away or something science-y like that, but it’s not like that for me.

Did you know your throat is divided into two paths? Apparently, there are two passages back there, called pyriform sinuses. In my case, my left tunnel is mostly blocked due to Mr. Tumor McTumorface, and its current severely inflamed status, thanks to radiation. Right now it’s so blocked up that I’ve gotten spaghetti noodles and pills stuck there. The other thing that gets stuck there? Phlegm. Especially when I sleep.

For the last seven nights, I’ve been training myself to sleep on my right side, so that the drainage is assisted by gravity. It mostly works. But for my entire life, I’ve slept either on my left side or my back. Neither of those two options are good for my phlegm issue. Do I get an award for the amount of times I use the word phlegm in a single post?

Retraining myself to sleep on my right side just feels weird. It’s like wearing joggers backwards. It really shouldn’t matter, on the face of it, but it just does.

I’ve met my nemesis, and it’s name is Phlegm.

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The Home Stretch

Radiation Day 31. Chemo week 6 of 7.

Since November 17th, my life has been ruled by cancer. Preparing for treatments, fundraising, scrambling to find insurance, treatments, side effects, etc. As I near the end of the treatment phase of this journey, mixed feelings have emerged.

I will have to find a new way to fill my days. There’s only so much streaming I can watch, Wordle I can play, and naps I can take. During the first few weeks of recovery, the only thing that will really change, at least as far as my schedule is concerned, is the five-days-a-week treatments. I’ll still be immunocompromised, weak, and fatigued. And now with even less activity!

In a weird way I’m going to miss the daily radiation routine. Giving the technicians my full name and birthdate each and every time, even though we are close compatriots by now. The daily zen practice of strapping into the tomotherapy machine, head restrained in the rigid plastic mask, was therapeutic, in a weird way. Maybe I’ll try those sensory-deprivation floatation tanks that people on the west coast have been talking about for ever.

I’m also going to miss the weekly chemo days. It was my “spa-day” in another cruel twist, almost an entire day focused on my wellness and health. I’ve got to find another way to incorporate that self-focused wellness into my routine. I think we all do.

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Steady

Radiation day 28 of 35. Chemo week 5 of 7.

After another couple tweaks to my pain management, things are mostly stable now. The headaches have become far less frequent, and thanks to my ridiculous-looking gel pack head wrap contraption, easier to address.

The doctors and nurses have warned quite clearly that we are not out of the woods. When active treatment ends, the pain and side effects can linger on for weeks. And we will not have any conclusive results for at least 12 weeks afterwards. Three months of hopeful waiting and recovery, keeping my mind off of the nagging elephant in the room.

Keeping my weight up is the current challenge. My milk allergy precludes me from utilizing all the usual tools in the kit — the Ensures, Boosts, Benecals, and more all have milk in them. Nature’s most calorie-dense food, evolved to get newborn calves up to a healthy weight as quickly as possible, are off-limits to this human. How tragic.

Plenty of non-dairy substitutes exist, but none pack in the calories like glucose-fortified milk fat products. I’m back to what I used to weigh in my 20’s. There’s only so many of these plant-based smoothies I can tolerate in a day…

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Chaos Rules

Not even an hour had passed since my last entry before all my blabbering about pain management became obsolete. Something irritated the back of my throat and nasal passage, and the headache immediately kicked in. My temporary bravado to coat my throat with magic mouthwash and try new things became this weekend’s downfall.

Continue reading “Chaos Rules”
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Management

Radiation 23 of 35. Chemo 4 of 7.

The pain was not under control. In retrospect, this has become blindingly obvious, but in the fog of war it was not clear at all. For about two solid weeks, the only predictable thing about my condition was chaos. Everything was touch and go, moment to moment.

Pain management has changed everything.

Upon hearing that I was not able to keep my eating consistent, my oncologists intervened. I had been resisting taking the narcotics prescribed, as I didn’t want to become another strung-out opioid addict that we all read about in the New York Times —yet another statistic. By Tuesday this past week, I finally gave up all pretenses and asked about a feeding tube. I thought if they could just feed me through the tube, I wouldn’t have to endure another searing migraine brought on by trying to eat.

Dr. M had other ideas. He asked me to try a different approach: a skin patch. Over the course of 72 hours per patch, the little sticker affixed to a fleshy, fatty part of my skin would deliver a steady dose of a powerful pain medication, as opposed to the “peaks and valleys” nature of taking pills. The pills are still part of the regimen, but they now fortify instead of reconstitute.

Now, it’s not all quiet on the western front, but the chaos has been reigned in. While I can’t drive, and I still have to limit my in-person interactions with people, I can reasonably expect to feel somewhat normal most of the day. Pain while eating is still present, but switching to soft foods & mostly liquids has helped. The daily migraines have dialed down from a 10 to a three or four. Not great, but way more manageable.

With the pain finally under control, I am optimistic again. With a clearer mind, the coming challenges will be far easier to confront.

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Patchwork

Radiation day 21 of 35. Chemo week 4 of 7.

I’m on the patch. One of my oncologists heard about my difficulty eating, and has put me on a pain medication skin patch. It’s only been 24 hours since it was first applied, but the pain is already much more tolerable. Combined with my new, disgusting diet of “Very High Calorie” Boost shakes (530 calories in 8 ounces!), pudding, ice cream, and other calorie-dense, easy-on-the-throat foods, hope abounds.

The Boost has the viscosity of motor oil, and is about as pleasant to drink as that sounds. The odd thing about my malfunctioning taste buds is that I can still smell all the food I’m consuming, with none of the physical taste. It’s the La Croix of food.

The patch is applied to my lower back where it should keep me in a mostly catatonic state. I’m also not to drive or operate heavy machinery while under its influence. It definitely has slowed down my typing and accuracy. It’s like bubble wrap for my brain.

But at this point the doctors say it’s about pain management and weight maintenance. So I’m patched up and ready to go. 3 weeks left, then recovery. If I can beat this cancer, getting off of the opioids will be the next step. One thing at a time…