The mask of doom

Monday morning I headed to the slab for a dry run. They do simulations, with everything just as it would be for radiation, except without the radiation. This means lying down on the bench, snapping on the mask, and the radiology techs making marks on the mask so the beams can be aligned.

Not fun.

Since the left side of my face is pretty swollen still, the mask is even tighter than it was the first time around. In addition, it now pressed right on the tip of my nose and across my brow more tightly than before. I got the tech to cut out a smal portion around my brow, but they really can’t do that with the nose portion, since that’s what presses me into the table and keeps me still vertically. That’s disappointing, because I can’t open my eyes in the mask now, either, which means I’m just lying there, blind, whie they do their thing. On the plus side, I had swallowed down one of the Xanax prescribed to me, and my panic wasn’t nearly what it had been with the PET scan, although it was still pretty bad. Between the nerves and the (re)fitting, it took four tries to get the mask in place. Once in place, though, that Xanax started kicking in a bit more, and I patiently waited for the techs to do their thing. The procedure itself took about five minutes or so, and they told me that typically it will only take that long for each treatment. They schedule patients 15 minutes apart, so as long as they can get someone in place in a reasonable amount of time – or get the mask on them without them hyperventilating into a heart attack – they can get a lot of people in and out through the day. I have enough drugs plus refills to last through the treatment period of 6-7 weeks, so I think I can do this.

Tuesday, it’s off to the dentist, to make sure that I don’t need any major dental work before we begin. I’m sure I don’t, but I also have to pick up flouride trays to use throughout treatment so all my teeth don’t fall out, so it’s a necessary stop.

Wednesday, it’s off to the surgeon so he can check out his handiwork again. I fully expect him to give the all clear, even though the horizontal incision is not completely closed, and Wednesday afternoon, it’s off to the medical oncologist for the first round of chemo. That visit will take about an hour and a half or so, as it’s the loading dose of the drugs I’ll be receiving once per week for the next 6-7 weeks. Subsequent visits will be in the range of about 3 hours a pop.

As I expected, the first round of radiation will be on Sept. 6 – the day after Labor Day – and will be every weekday for the entirety of the treatment period. Things should start getting interesting pretty quickly, given the effects radiation and chemo have on the body. I can’t wait for it to be over, and we haven’t even started!

How many calories is that again?

I now have a date with a tube. A feeding tube, that is. On the 19th, I will be the proud recipient of a tube that will help me reach certain goals, like staying nourished in order to stay alive through treatment.

Last Thursday, we met with the dietician and then the radiation oncologist.

I’m not having any particular issues eating at the moment – that is, I can get food down, although it takes me awhile to do it. There are very few things I really can’t eat at all. Bread is one of those things, which is too bad, since I really like fresh bread. It’s simply too dry and takes too much water for me to work my way through a single slice. Anything else is pretty much fair game as long as there isn’t too much of a skin on it, as that gets caught on the roof of my mouth and I either have to fish it out with my fingers, which disturbs whoever I’m eating with, or I have to swish some water around in my mouth, which often just works to move the stuck piece to another place in my mouth where I can no longer move my tongue to get it down, resulting in me having to reach in again.

Anyway, back to the dietician. She did ask me about my eating habits, and at my weigh-in, I was at about the same weight I had been the week before at the surgeon’s office, so I guess my weight regain is slowing down. She did the calculations, and to maintain my current weight during treatment – especially when we really start going into the heart of it – I’ll have to take in 2200 calories a day. “How many calories is that again?” I asked. I don’t think I’ve ever eaten that many calories in a day. Fortunately, there are all sorts of liquid meals available to provide calories and nutrients. The dietician also showed me one item I thought was amazing: it’s a little tub, 1.5 ounces (yes, ounces) of a colorless, tasteless liquid. That little tub has 330 calories by itself. Amazing what modern science can do.

The radiation oncologist had a look at my neck, said it looks good (and it does), and that we should get the all clear from the surgeon and get going. He also wanted to schedule the sim(ulation) for that day, but their machine was down, so it was rescheduled for Monday. The clinical research nurse came in and I signed off on the consent forms for the study, then headed upstairs so the lab could draw some blood for a baseline workup before starting treatment. It’s a little nervewracking to know we’re very close to beginning the next phase.