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.
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.
Being mounted into my mask in the radiation gantry. Photo by Amy Kubes.
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.
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.
Chemo card spotted in a Santa Cruz shop.
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.
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.
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.
When the diagnosis rolled in and I realized what the treatment schedule was going to look like, I made a list of all my spring and summer plans to figure out what to cancel. Which was pretty much everything – there’s no way to take a break in the radiation course, nor to move it to another clinic. Because I’ll need the custom-fit fiberglass mask that will strap my head down in perfect position and be bolted to a tray that will clip into the radiation toboggan, and because it’s essential that the radiologist have consistent experience with patients, I can’t go anywhere for two months once treatment begins. Add in recovery time, and we can pretty much call it three months.
We’d had gray skies through most of the trip, but the sky opened up and I was able to enjoy sunrise over Lake Tahoe on the final morning.
So I canceled plans for a couple of organized rides, told my parents I wouldn’t be able to visit Morro Bay for a while, and told Ward that backpacking was out for me this Spring.
That left the annual work ski trip, which always happens in late March, and is a highlight of the year for me. We love to do one day of snowboarding/skiing, and one day of snowshoeing, eat a lot of great food, and get to know people in other departments. But when I brought it up with the oncology surgeon a couple of weeks ago, he surprised me by saying “You have to go – it’ll be a great outdoor experience to remember when you’re in the thick of things, and a reminder of what you want to get back to when this is all over. ” Good advice. Turns out he’s an active snowboarder too.
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.
Artifacts of a 2018 visit
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.
Physically, I don’t feel that much different – I need a bit more sleep, my throat feels kind of “thick” with just a bit of difficulty talking sometimes. The hard part is yet to come.
Emotionally, I’m coming to terms with what’s coming down the road. I’ve learned a ton in the past week, and all of the information has helped turned a big scary mystery into a big scary plan. But I no longer have “fear of the unknown.” I know it will be uncomfortable and then painful and I just have to be here for it.
On a boat in Kauai, 2022. I miss feeling this healthy – time will come again. Photo by Ward Ruth.
The number of appointments and scans involved in planning for cancer treatment is just ridiculous (but everything has a reason – no complaints). Trying to fit all of this into my work schedule has been a challenge, but work has been really supportive – no one is complaining that I’m missing half the time. I’m keeping a log of appointments I’ve had or that are coming:
