scot hacker's foobar blog

Among the zillion things our bodies do that we normally take for granted is the ability to chew and swallow without difficulty – the physical act of how to ingest food is not something we generally need to think about. All of that goes out the window when you’re getting daily doses of radiation to the throat, creating a massive sunburn in the middle of your head, focused at the tonsils. This is super-sensitive tissue, which swells up badly with repeated irritation.

I’d been told that the difficult part of this process would start to ramp up between weeks two and three, and we’re there now. Up until this week it’s been uncomfortable but manageable, but the other day I woke up with a super sore throat that was painful even when doing nothing. Swallowing suddenly became a whole different ballgame. Even trying to gulp a mouthful of water can feel like trying to push a golf ball down a garden hose half its diameter. A feeling like crunching glass accompanies every gulp.

The sensation is very different for different kinds of foods. “Smooth” is the name of the game. The more slippery and smooth the food, the easier it is. Anything with any roughness has to be chewed to a puree before I let it hit the back of the throat (which is itself a challenge since I’m missing all molars now).

Continue reading “Meals Are Now a Chore”

One of the recent puzzles has been trying to figure out how long to keep working. I hear from doctors about people who took the entire treatment time off, and about others who worked all the way through. My job as a software developer is physically passive but mentally taxing – it’s not like I’d be pushing too hard to keep working in general, as long as I was able to bow out and nap/rest when needed. The chemo exhaustion is so unpredictable- one day I’m feeling pretty good, the next I can barely keep my eyes open. This happened at work the other day:

I sort of figured that the first couple weeks would be the easy ones, so I’d keep working, then go on leave. That “last day” was today, though I didn’t get my unit tests working and can’t leave the pull request unfinished, so I think I’ll squeeze in a few more hours. But otherwise, I’m done – in free-fall, time-wise. I’m so not used to unstructured time, I wonder if I’ll know what to do with myself.

And hope I got the timing right. I’m not looking for a free vacation, but also want to leave plenty of time to contemplate the existential side of this process, read some books, process, feel grateful.

Here we go.

Spring and summer are such rich times of year for adventures with family and friends, and we had a few stacked up for this year. But one of the first things I had to do when I got the diagnosis was to cancel all the plans.

First was the Sea Otter Classic – a century ride I was going to be doing in Monterey with old high school friends last weekend.

Then the invitation to camp out on a friend’s beautiful land in Big Sur for Easter weekend – Amy would have joined, but we had to wipe it off the table.

Most years, I get the generous invitation to go backpacking with my friend Ward – in Ventana Wilderness or elsewhere. Those plans hadn’t been set yet, but I was looking forward to it – off the table.

I usually make multiple trips to Morro Bay to spend time with my parents and explore the splendors of the Central Coast – now that’s completely on hold until late summer.

And then the big one – we had been planning a late-summer trip to Scotland – combination rail, driving, and hiking, that we were so looking forward to.

It’s not that I can’t do anything but sit around the house – it’s really three things:

• I can’t interrupt the 35-day chemo-radiation cycle even a little — I’ve got to be there every day. So nothing longer than a weekend is possible.
• What would happen if I had a medical problem and was away from my doctors and hospitals? What if I couldn’t get any emergency treatment at all? This is a bit subjective, but it just feels like now is not the time to be far from my doctors, or to be taking any unnecessary risks.
• There was no way to anticipate in advance how hard the treatment would be, what kind of shape it would leave me in at any point in time, or how long the painful recovery process would be.

So here I am today, feeling a strong sense of FOMO and sadness about missing the Big Sur camping weekend. Yeah, technically I could have been there and it probably would have been fine. But there’s more to it – the “chemo brain” is setting in more by the day, and I feel “thick” – my body is moving more slowly, I am thinking more slowly, and need lots of naps.

Somehow the idea of being surrounded by dozens of active, enthusiastic people in a hiking and party mood just doesn’t appeal right now. I need to be able to lay down for a spontaneous nap whenever the mood strikes. This is slow-down time. For now, I’m on the outside looking in.

I’m OK with the FOMO – I know it’s all in the service of a bigger picture – healing to the point of being able to enjoy these sorts of things for the rest of my life. It’s worth it.

Just back from Chemo Day 2 (and Radiation morning 6) and all is well, pretty much. 

It’s definitely a “slow build” in terms of symptoms. My throat is a little more sore every day. Last night I briefly had trouble swallowing saliva – it didn’t hurt, but I just couldn’t work the muscles around “the blubber” as I’ve come to call the tonsil tumor. And I have persistent brain fog. I’m calling it “radiation brain” though Dr Kelly was quick to point out that “We are not radiating your brain.”  Derp, I know that, doc. Just saying I’m having brain fog from all the treatments. 

I’m a little more forgetful, and have trouble finding words sometimes. But I’m still working, for this week at least, and half of the next, then down time starts for real. No real pain to speak of, knock wood. But we’ve got a long way to go and I know it’s coming. 

Continue reading “Week One Done”

I’ve had three radiation visits and one chemo session so far. It’s hard to separate out what sensations I’m having are the result of what, but I know that I feel a hot tingling in my throat after radiation days, which I take to be the first sparkles of sunburn back there. It’s a minor effect though – no real pain.

It’s harder to describe how the chemo effects feel. Sometimes it feels like I have the beginnings of a head cold, like my sinuses are clamping down, and I have some of the brain fog that goes with a cold. But I’m not sick, and it’s kind of more “penetrating” than a sinus head-cold sensation. I feel like I have to work a bit more to think through the brain fog than I would with a head cold too.

After a few days, some of the initial exhaustion kicked in, and has persisted. It comes and goes, but there’s a noticeable difference compared to usual – even when I get a full night’s sleep, I find myself wanting to nap in the middle of the day, and I’m allowing it.

I have a small flotilla of anti-nausea meds on hand, but have been lucky so far not to experience almost any nausea at all. Some of them are recommended for certain days (“take these on days 2, 3, and 4 after chemo), while others are “as needed.” I’ve only taken one of the “as needed” pills. But it’s early days yet – I won’t be surprised if I need them more in future weeks.

I’m noticing a definite diminishment of my ability to taste food – things that I think of as delicious just … aren’t. I’m not yet at the “wet cardboard” stage that some patients describe – there’s some taste there. But everything feels unsalted when it’s already salted. Fruits taste less sweet. Fats taste less fatty. According to one of the doctors, this is a real challenge for people, who lose all desire to eat when they can’t taste their food, and that’s a problem when it’s critical to keep your caloric intake high. I feel like I’ll be able to stay committed to plentiful eating even if it tastes like nothing.

I was advised to start tracking everything eat with a calorie tracker, and chose the badly named Chronometer. It’s kind of fascinating seeing exactly how many prunes it takes to equal the calories in an egg, but it’s a rabbit hole trying to figure out how much detail to go into with your entries. I’m using it in an approximate way, just trying to meet the recommended 2500 calories per day.

Anthropologists once unearthed an ancient Egyptian list of known diseases and their treatments. A description matching that of cancer was found on the 4,000-year-old list, alongside hieroglyphics saying essentially “There is no cure.”

I’d heard very good things about the book “Emperor of All Maladies” by Siddhartha Mukherjee, and found a copy in Bookshop Santa Cruz last weekend, but it was a giant tome and I knew I’d never get through it. Happy to find, though, that it had also been made into a documentary by Ken Burns.

Supposedly available on PBS, but when we went to watch it tonight, found that all you get online is an odd-collection of 25 five-minute clips. No explanation for why it wasn’t available in its entirety, but many of the clips are fascinating. Worth perusing to catch up on why the disease has proved so elusive to cure over the centuries, not to mention the cruel treatment dished out to its victims when doctors didn’t know what else to do.

Interesting watch.

“Cancer? But you look so healthy!”

That’s what the proprietor at the Thai restaurant said when I went to pick up our dinner the other night. I’ve started to realize what a common misperception this is – that cancer only affects people who are sick, or weak. But that’s because we think of it as a disease like other diseases, rather than a random outbreak of cell mutations. Cancer hits healthy people all the time. Cancer don’t care.

I watched a YouTube video the other day by a guy who got the same Squamous Cell Carcinoma throat cancer that I had. Everything about his diagnosis and treatment was identical, until we got halfway through, and he revealed that he was going to “treat it” with a vegan diet, juicing, and fasting. Wanted to get really healthy, too healthy for cancer. But it was such a profound misunderstanding, and he paid for it. As months went by, his visible tumor shrunk, and he thought he was on a good path. But when he went for his next scan, a whole string of lymph nodes was cancerous. The visible tumor had only shrunk because the cancer cells had consumed it, and moved on to other nodes. The only “health” happening there were the cancer cells themselves, who were flourishing as he left his cancer untreated.

Stay healthy, yep. But don’t think for a second that your health will protect you. Cancer don’t care.

Being healthy may help you survive it, and avoiding behaviors like smoking will prevent getting certain kinds of cancers, sure. But many cancers affect us pretty much at random – roll of the dice.

Two-appointment day.

Now that the dental work has had time to heal, it was finally time for my final CT mapping – the scan that will be used to precisely focus and target the radiation for maximum benefit and minimum side-effects. And to do that precisely, my head will need to be in exactly the same position on every treatment.

Continue reading “Mesh Mask and Laser Light”