Last week I had medical appointments: a CT scan of my chest to follow up on that dot they thought was nothing; an ultrasound of my liver to follow up on that light they thought was nothing; and a prep for my external beam radiation (EBR). The first two were uneventful and I expect no momentous news from either of them, so I will dwell on the third, which occurred Friday morning.
I don’t know why, but I went in expecting a chance to talk with the doctor one more time, perhaps because denial and fear of protracted pain and muteness dictate another round of “is this really necessary?” But I am clearly way past that point. There was no doctor, just radiation technicians, and the main event was the design of a mask for me to wear and getting a good mapping of my head.
The point of EBR is to shoot tiny beams of radiation in exactly the same place every day for a few weeks to kill off any remaining cancer cells and prevent them from coming back. To accomplish this, the patient must be in the exact same position each day, and the radiation “guns” must be in the same position each day. To accomplish this, they make a mask which they can then fasten to the table. It holds your head exactly in place so that you can’t move and the beams of radiation go exactly where they are supposed to. The mask looks like something straight out of a horror film.
Making it was a strange sensation. First a mouthpiece is made. Then you wear the mouthpiece and they pull a warm synthetic material over your face very tight, with only a hole for the mouth. This is followed by a lot of pressing and pulling, and then a cool sensation as the substance hardens into the mask. Then they take it off and cut out the eye holes with a very loud drill, and finish the job by testing it out, which includes screwing your head down to the table with it.
The blue ring is where they attach it to the table. I like that my name is on it, just like a jacket in kindergarten.
I know the claustrophobes among you are already freaking out at the close quarters and lack of movement. I want to suggest you have it all wrong. I want the thing to be tight and to be totally restrained. This is not because of some bizarre S&M proclivity on my part but because my fear is not of small spaces but of something I call false accuracy.
My favorite example of false accuracy is determination of the first down in American football. They have two officials holding chains (the “chain crew”) to see whether the ball is far enough at the end of a play for a first down. So it appears very accurate.
Except that the ball was placed there by a referee who more or less had to eyeball where the ball landed at the end of the play, especially if the player carrying the ball ended the play at the bottom of a pile. It looks accurate, but the accuracy comes on top of guesswork. If you prefer an academic reference, try Donald MacKenzie’s history of nuclear missile guidance systems.
All this is to try and explain the level of concern that filled me when one of the techs said to me “you’ll need to make sure your beard is the same length every day.” In theory, that’s not a problem. Except nobody told me about this ahead of time (she was apologetic–I guess the doctors are supposed to say something), so I arrived with my beard at some random length which would be impossible to maintain. My two options are, as I mentioned in the previous post, to shave it all off and shave every couple days with an electric razor, or to crop it very short every couple days. You would think after having a beard for 20 years I’d be dedicated to keeping it, but since apparently half of it will fall out during the treatment, I’m not sure this is the best option. In any event, the blog query has gotten no answers and the Facebook query has gotten one suggestion and a whole lot of “use a razor!” replies. While a very interesting retort to all those electric razor ads they run during football games, the suggestions are irrelevant to my situation, since I won’t be developing 20 years worth of shaving skills in the next two weeks and I was expressly instructed not to use a razor because it would be very bad to cut myself.
Anyway, that will have to be resolved by Tuesday, when I return to get double-checked. I was heartened to know that I would have to come back with my facial hair “as it would be” so that they could be certain of their accuracy.
The other thing the tech said to me was “try not to lose any weight.” Besides this being the first time in my entire life than any medical professional has uttered that sequence of words to me (unless you remove the words “not” and “any”) it is very likely impossible. Most people get on a liquid diet very quickly, some even go to a PEG tube, and many EBR survivors tell me they lost a lot of weight. After inquiring about this on the US survivors’ list, it appears they check every week at least, and there are stents and things they can give you (or just make a new mask) so that you’re in the same place every time.
While I found the whole thing interesting and curious, and shot the photos of the masking thinking “hahahaha, this will be great to put on my blog,” a few minutes later as I was exiting the hospital, a creeping dread befell me. I was due at school in 90 minutes, but I wanted to be alone. I really wanted to be alone. For the first time in quite awhile. So I went to lunch, ordered a salad with croutons (two things I will unlikely be able to manage as the therapy goes on), and read a chunk of Music and Cyberliberties in an effort to get my head in a good space for Friday’s faculty symposium.