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Trying a new hat on

Dork alert!

Well, it's been a busy week or so in the cancer treatment saga. I was supposed to start my third round of chemo last Wednesday (May 25th), but my platelet count dropped too low, so the chemo was delayed. The interesting thing to me is that the platelet count had been fine (barely) the week before, but dropped after that, which indicates that the previous round of chemo I'd taken at the end of April was still at work. Or maybe it just takes your body a while to respond to the effects of the chemo, I don't know. Anyway, I had my platelets counted again yesterday, and they had jumped from under 90 to over 110. So I started round three of the chemo last night.

Meanwhile, I also finally got approval from my insurance company to use the new Optune technology for treating glioblastoma multiforme. Here's a short description of how the technology works. Basically the device creates low intensity electromagnetic fields that are applied to your brain via transducer arrays glued to the scalp (which has to be shaved), and these fields interfere with the mitosis of the cancer cells, preventing tumors from forming or spreading. Originally it was approved to treat GBM after tumors had recurred following normal surgical, radiation, and chemotherapy treatment, so it was a last ditch treatment when all other treatments had been tried. The results have apparently been so good however, that the FDA has approved it to be used before the tumor has recurred, during the second phase of chemotherapy that I'm currently undergoing.

Well, obviously a cutting edge high tech device like this is catnip to my science fiction friends, and I was pretty excited about it too when I first heard about it. But the more I learned about it, the more anxious I became. It's a complicated piece of equipment, with lots of parts, and in particular keeping it powered is a pain in the ass. There is a way to plug it directly into a wall outlet if you're going to be stationary (e.g., when you're asleep), but it you need to move around, you need to attach it to a battery. (They recommend that you apply the tumor treating fields for a minimum of 18 hours a day, seven days a week, so they prefer that you sleep with it on. This allows you to take short breaks during the day, e.g when you need to take a shower -- with a shower cap to keep the transducer arrays dry.) The batteries last three to four hours, so if you have to take that into account if you're going to be traveling, etc. There's a backpack for holding both the field generator and a battery, so you can carry it around with you, but you constantly have to be aware that you're tethered to this thing.

Perhaps even more of a pain is the application of the four transducer arrays to the scalp -- both sides and front and back. Both Denys and I concluded after watching the training video that I wouldn't be able to do it alone, so somebody who has been trained (which at this point is just Denys) would have to be there to help me. The woman who came out to show us how to use it thought I should be able to do it myself, since my head is large enough that the arrays shouldn't overlap in ways that require trimming, which is hard for patients to do themselves. However, I'm unconvinced. First of all, the arrays have to be applied in a slightly differently place every time, although in a fairly regular way (basically just a pattern of moving forward and backward so that the arrays aren't always glued to the same part of the scalp), and it would require me to be able to see the back of my head. Without an elaborate mirror set up, I just don't see how it's possible without somebody helping me.

So now I feel that I'm tethered and dependent. Obviously going out in public with the backpack, the bandages on my head (even if under a cap) and cords dangling between is going to draw attention. I'm basically feeling very uncertain and anxious right now, and it will take me a few days of living with this to know if I can stand it. Even minor things like taking off and putting on a shirt become more complicated. By the time we had finished the training session yesterday, I was mentally exhausted, but aside from getting irritated at having to carry the backpack around and wrangling the cords, living with the device overnight went okay. There's a fan on the field generator, and I think I need to set it somewhere while I'm sleeping that isn't so close to my ear as where I had it last night, but other than that I seemed to sleep okay.

Still a lot to figure out. Mary, who was the trainer and who will come by periodically to download the database that tracks usage statistics), advised that we change the transducer arrays every three or four days, and recommended that we choose a regular schedule of every Tuesday and Saturday. So Saturday is the next big milestone. When I take the old arrays off, I have to clean my head, reshave it, wash it with rubbing alcohol, then apply the new arrays. The arrays get a little warm too, and Mary said that exposing them to direct sunlight will cause them to malfunction, so I have to wear a hat or other covering when I go out. If my scalp sweats, it can loosen the arrays, so I have to be careful about that too. Hair stubble can both loosen the arrays and cause them to run hotter, because it takes more power to, um, transduce the fields when the arrays aren't in full contact with the skin. Lots of little details like that to worry about until I get a better feel for how this all works.

Maybe it won't be as bad as I fear. I'll be curious to see whether I'll be allowed to take longer breaks from using it, for example during the long trip to BC to see Sharee that I'm planning for next month.

Meanwhile I've also gotten a barrage of paperwork from my long term disability insurance company, so the bureaucratic nightmare isn't quite completely over. It's mostly stuff like direct deposit of checks and getting me signed up for SSDI so that they can pay me that much less, but it's all kind of a pain in the ass, especially when I'm feeling a little pissy and anxious to begin with. Just trying to take it one form and phone call at a time.

More presentable?



( 8 comments — Leave a comment )
Jun. 2nd, 2016 01:11 am (UTC)
Ah, the price of cutting edge technology. Another decade down the road and they'll likely have solved many of the inconveniences, developed stylish caps that help wick heat away while also being water-proof, or at least water-resistant. The gear will be smaller, the batteries will last longer, and the adhesive gel will probably be better, too.

But right now? Yeah, they've probably improved the arrays from the first prototypes, but they're still clunky and hard to custom fit, the wires thick, and the gear, while not enormous, is non-trivial. Add to that the fact that the kit is brand new to you and it's no wonder you're feeling uncertain and anxious. Good luck through the shakedown period, and make your decisions about whether and how long to continue it based on the knowledge you'll gain in the process.

The thing I liked best in the instruction manual is how the effectiveness data was measuring time without tumor progression rather than simply survival times. I'm no expert, but I think lack of tumor progression is a key quality of life factor so long as treatment starts when quality of life is already acceptable, decent, or even good. The fact that Optune has proven effective enough that it's now approved for use before all of the other options have been used is also a good sign.

So happy you're going to get time with Sharee next month! Fab!

If you want to, it might be fun to invite your numerous clever and creative friends to contribute to the list of amusing and/or snarky explanations about what the thing on your head is. Between now and Election Day, it could be a device to ensure [insert whatever election outcomes you want here] happens. You could encourage others to get one so their desired election outcomes would happen, too.

Okay, this sort of thing obviously doesn't play well to my skill set, but I remember reading about the high school senior in Iowa who lost an arm in a car crash the January before graduation. She sent out Valentine's with a picture of the stub wrapped in bright pink gauze and the inscription, "I nub you!" She and her family came up with a list of "what happened" answers. "Iowa corn shark attack" was one of them. My favorite was, "They say college costs an arm and a leg, but I'm getting some scholarships, so it's only costing an arm."

Then again, you might want to play it safe'n'straight. One of the guys working on the Ig Nobel Prizes was diagnosed with GBM shortly after you were. I don't know all the details, but he ended up in a locked psych ward for awhile between symptoms appearing and finishing recovery from surgery. Convincing them he was sane turned out to be non-trivial, and, of course, the sort of sense of humor that has him working on the Igs worked against him on that task.
Jun. 2nd, 2016 03:48 pm (UTC)
Wow, that's a pretty scary story about your Ig Nobel friend! Whereas the one about the girl who lost her arm reminds me of the stories I'd come up with as a kid to explain the (at the time) rather prominent scar on my chin that I got when I fell chin-first on a fireplace mantel. Pirates were probably my favorite explanation, although after we moved to Yap sharks were the fall back.

Regarding improvements to the equipment, the trainer, Mary, told me the next generation of equipment is almost ready for general release, and I actually might see some of it in the next month or two. I don't remember all the changes she talked about, but smaller and lighter in general were prominent themes. The whole array placement and replacement process still seems like a major problem to me. Maybe if you didn't have to glue them to the scalp, and they just clamped on somehow?

That's a good reminder about quality of life vs quantity of life. A guy I work with had a younger brother who died of GBM not long ago. When I told him I might be using the Optune, he said that his brother had used it. This was at the point when they were only using it after the tumor had recurred, and he said the cancer stopped spreading once they started using the Optune. Clearly they decided to stop using it at some point, and the cancer then killed him, but maybe it gave him a few more months of quality time.

I'm still not sure I heard this right, but I thought one of my oncologists told me that she knows of a woman who has been using the Optune for two years. Maybe she's an experimental case to see how long they can keep the cancer at bay? The prospect of living with this thing (even sleeker versions) for the rest of my life isn't a particularly happy one.

Then again, this morning I took my first shower with a shower cap on to keep the arrays dry. Maybe I'll get the hang of this yet. Still not enjoying lugging the backpack around whenever I need to move more than five feet, but I'm also starting to figure out how I can switch between battery and wall outlet without turning it into a major operation, so learning is occurring. Now I just need another wall outlet cord or two, so I don't need to carry it with me when I move from bed to computer to upstairs TV. I know, I know, I'm such a slacker! But they offered to give me extra cords, so why not?
Jun. 2nd, 2016 05:55 am (UTC)
Just saw an article about how backpack PCs are a thing. That is what it takes to run a VR headset without being plugged into the wall. So, what you need to do is get a really big pair of goggles. The big dark glasses that people wear after eye exams would be perfect. They're cheap, and they're almost totally opaque, so nobody can see what you are really doing. While you are walking around, it would help maintain the illusion if you occasionally make gestures in the air.
Jun. 2nd, 2016 03:51 pm (UTC)
I *love* this idea, even though I don't think I'm enough of a performance artist to pull it off.
Jun. 2nd, 2016 02:38 pm (UTC)
I remember Jay Lake observing what a farce it is that when people are at their most stressed and vulnerable is when they have to fill out a metric tonne of paperwork. It just sucks. On the other hand, you seem to be handling it with your usual aplomb, which is both impressive and a goodness.

Looking at your picture with the backpack, my first thought was that you look like a psychic ghostbuster, or maybe that your ghostbusting proton pack is fueled by energy from your enormously powerful brain. I hear that Kells is haunted. You could go over there, have a pint and zap some restless spirits at the same time.
Jun. 2nd, 2016 03:53 pm (UTC)
Other people have gotten the ghostbusters out of this set-up too. Considering that I'm just now re-reading Sofia Samatar's A Stranger in Olondria, about a restless spirit tormenting a sensitive soul, I just hope the transducer arrays *do* keep the restless spirits away. The paperwork is enough torment for me, but I think I can survive it.
Jun. 2nd, 2016 08:23 pm (UTC)
Hey, back in my day we had to push our iron lungs to school through the snow. Up hill both ways....

I bet the various accommodations will become less annoying with time and practice. They say it takes 20 days to acquire a new habit, so maybe wait that long before making any decisions about your new cyborg overlord. Because it would be very cool if you found the Optune keeps new tumors at bay until the Optune 9000GI is available in a range of trendy colors and skins.

Meanwhile, in terms of keeping the tendrils covered but cool, maybe you could channel your inner biker, and tie on a sporty bandana?
Jun. 2nd, 2016 08:44 pm (UTC)
I used to have some bandanas in my punk rock days, but those are probably long gone by now.

As for living with the Optune, it helps that the medical team having given me clearance to leave it behind when I travel. They can't say for sure whether I'm hurting myself by taking breaks, but I'll still be taking the chemo, so I wouldn't be abandoning treatment entirely. Plus it'll allow me to enjoy myself more. Quality of life vs quantity of life.

In any event, 20 days seems like a fair trial, and I'll certainly give it that much. Maybe even 21.
( 8 comments — Leave a comment )

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