Category: Cancer Journey

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”

A few days ago, I had no idea there was such a thing as “Oncology audiologist” or “Oncology dentist.” But radiation treatment can have real impacts on both hearing and dentistry, and they need baseline measurements and preparatory conversations before getting started.

The audiology visit came first. They led me into a soundproof room with thick walls, and inserted a series of earbuds into my ears and played long series of clicks and tones at high and low tones, with progressive degrees of quietude. Also, tests where I was asked to repeat words back. My hearing is normal, with typical falloff at the high end correlated to my age. Potential effects of radiation would probably be either tinnitus or mild hearing loss. Possible future hearing aids if that does come to pass, but it’s rare. Not much to say here.

The Dental Oncology visit was more intense. I’ll definitely need fluoride trays, and to fluoridate nightly during treatment (loss of saliva during treatment means a much higher likelihood of cavities). But why is there less saliva? Because my salivary glands will be irradiated too, and damage to them could be permanent. I should expect a drier mouth for the rest of my life. Apparently, these days they are able to do a better job of targeting radiation so that it has minimal impact on salivary glands. And some people even have pre-surgery to move the glands! That prospect did not come up in my case.

The really scary/new information was that the radiation will also affect vascular flow in the jaw, which will make it impossible for it to heal in the future. That, in turn, means I will not be able to have teeth removed or implants done in years to come. So it’s important to get everything removed now that looks like it might be a problem down the line, and the doctor did find one tooth that seemed to have borderline future prospects. So, on top of everything else, I now have to have emergency dental surgery to have another molar removed, which means it’s going to get even harder to chew and swallow.

Not the news I wanted to hear, but I do appreciate the wisdom of it.

The next morning was to be my final CT scan – the “mapping and planning” one. Unfortunately, when I got there, they told me that we’d have to delay that because the tooth removal would change the structure of my mouth. So now I need to get the tooth extracted ASAP, give it 7-10 days to heal, and then do the final CT scan. Not great.