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?