scot hacker's foobar blog

Clinics and hospitals often provide a bell or gong to help patients celebrate the end of a course of chemo-radiation. Mine was no different, but after having seen Roger Waters going nuts on a big beautiful gong in Live at Pompeii with friends recently, I got it in my head that I wanted to celebrate with something more than a simple desktop gong.

I reached out to NextDoor to see if I could find a loaner gong, and ended up making contact with sound healer Valerie Devi at Sound Living. There’s a whole story to tell around that connection, but for now I just want to thank Valerie for helping me to open up a non-traditional aspect to my healing path. I’ll say more on this when I have a bit more energy.

Short version is that my final chemo treatment was delayed for a week when my white blood cell count dropped too far, which ended up placing my final chemo and final radiation treatments on May 27. Later that evening I gathered with Amy, Valerie, her man Mitch, and my friend Paul Porter at golden hour on the Albany Bulb. I said a few words about what it meant to have come this far and the work still to do, while Paul locked in with a tripod going for that perfect “Against the glow” shot and Amy walked around with my camera and got some spontaneous shots. I’ve collected some of the keepers here.

First, the “default” gong celebration available at the clinic, to mark my final day:

Later, looking for a more something more substantial celebration in the presence of friends and with a proper gong, at the Albany Bulb later that evening.

This is mostly my five-minute “I’m so glad to be alive” speech before the sound bath began.

More shots of the Sound Bath at the Bulb ceremony, by Paul and Amy.

It was a small gathering, but I was so grateful for the opportunity to mark this important middle passage – treatment may have ended that day, but I had plenty of warning that pain and discomfort – mostly due to mucositis – would continue to get worse for the next two weeks. Not only that, but I was going in for surgery the next morning to have a feeding tube installed after all. I know I know. More on that later.

Pain quotient has ramped up at least 2x in the past 48 hours, just like that. It no longer only hurts when I try to swallow, but full-time. Ironically, it did that over the weekend break, when I don’t even have radiation.

The medication goal is now two-fold:

1. To make eating possible
2. To make things bearable when I’m not eating

My diet is now fully liquid – I’m only eating Ensure and Boost. For a while I was still able to get down a bowl of Cream of Wheat with butter and banana each morning, but I couldn’t do a single bite of that yesterday. There are sunburns along both sides and the back of the tongue that are extremely sensitive to anything with the slightest bit of roughness to it.

The new regimen is:

• 20ml of Hydrococone to reduce pain in general (full body)
• 5ml of “Miracle Mouthwash” (Benzedrine and Lidocaine) to numb the throat structures.

I give those five minutes to settle in fully, then try to get down a 500-calorie Boost pretty much as quickly as possible. Four of those per day gets me to 2000 calories, which should be enough to avoid the feeding tube.

Because the Hydrocodone wears off after a few hours, I am awaked by a searing throat (like the Jolly Green Giant’s big leather boot is stomping on my throat) at around 2 or 3 a.m. and have to get up for another dose. Then I’m up for an hour and finally doze back off until morning. Such a blast.

I may end up being switched to morphine for the remainder of the treatment tomorrow – it has the advantage of not being mixed with Acetaminophen, and so its upper dosage is not limited. We’ll see what the doctor has to say at my Chemo session.

Feeling like I’ve aged 10 years in a couple of months. Over the past few days I’ve experienced the sort of profound chemo exhaustion that was promised all along, but has now fully sunk in. Last night I slept for 10 hours, was up for one hour to go to radiation this morning and do a quick dog walk, then slept for four more hours. Watched the tube for an hour then fell asleep for three more. It doesn’t even seem possible, but I’m still tired. Inexhaustible exhaustion.

It feels good to check the days off on the calendar. We’re well over halfway through now. Interesting to see this patch on my cheek where there once was hair, now has none. “A landing strip,” the doctor called it, but I believe that phrase has other meanings.

As a person who consumes pretty much zero daily medicines or supplements of any kind, it’s been kind of crazy coming to terms with all of the pills, powders, and potions that have become part of my new routine. Here’s a quick tour of what I’m working with and why. Sorry for sort-of whacky pics with found brass birds.

Anti-Nausea

The chemo drugs are super-nauseating, which works diametrically against the goal of consuming more calories than normal to combat my hypermetabolic state. A full bag of Zofran is dripped into my system before the Cisplatin main event, which takes care of me on Wednesdays. For the rest of the days, I need to switch between these three, depending on how many days since the last drip, whether I need slow- or fast-action, and how much constipational side effect I’m willing to deal with. Hence this fruit bowl of Zofran, Compazine, and Decadron.

Miracle Mouthwash

A blend of Lidocaine and Benadryl, I gargle 5ml of this stuff before every attempt to eat, then slowly swallow what remains. The goal is to completely numb the mouth, back of tongue, and throat, to alleviate the pain of swallowing, so that I can get some food down. It does a remarkable job, hence its nickname “Miracle Mouthwash.” Even more effective in combination with the Hydrocodone.

Continue reading “Meet My Meds”

The type of cancer I have – Squamous Cell Carcinoma – occurs when the HPV virus that most of us carry in dormant mode for most of our lives, decides for whatever reason to go nuts and mutate.

When I was a kid in the 70s, there was no vaccine for HPV. If there had been, and if I had received it, I would not be fighting an HPV-based cancer today. Today, a vaccine exists, and is remarkably effective at preventing HPV cells from mutating into cancer.

Not only is it incredibly effective with the usual two doses, but it now appears to be very effective even with a single dose, which gives the world an even better chance of vaccinating teens around the world with an effective preventative. From the journal STAT:

A clinical trial run by the National Cancer Institute seems to confirm that a single dose of the vaccine used to prevent infection with the human papilloma virus is just as effective as two — and, therefore, also helps to prevent cancer. The result could transform efforts to reach the three-quarters of children globally who should receive the vaccines but don’t. The shots prevent cervical cancer and also anal, penile, and some head-and-neck cancers. Worldwide, 350,000 women die from cervical cancer, the most common HPV cancer.

Please don’t hesitate – get your teens vaccinated for HPV.

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.