Mesh Mask and Laser Light

Two-appointment day.

Now that the dental work has had time to heal, it was finally time for my final CT mapping – the scan that will be used to precisely focus and target the radiation for maximum benefit and minimum side-effects. And to do that precisely, my head will need to be in exactly the same position on every treatment.

After I arrived, Nurse Moon gave me a tour of the changing and locker room, then I sat down to wait for a bit. A guy a little older than me was sitting there too. I said hello and asked how he was doing. “Not great,” he responded slowly. “Lately I’ve been thinking ‘Why me?’ a lot. I eat right, I exercise, but still this.” I could relate and it hit me kind of hard, but Lab Tech John arrived a minute later to lead me to the CT room, where the mesh for my mask was warming in a special oven. He placed his hand in it to prove that it was not too hot for comfort. “It’ll feel like hot towel at a spa” he said.

John took his time positioning my head, shoulders, and hips on the “bed,” lining up a green laser guidance line along my body. Then he opened the valve in my IV to let the contrast die flow into my veins. A few seconds later I felt a burst of warmth inside in my chest. Five seconds after that, the warmth migrated to my groin (crazy sensation!), then disappeared a few seconds later.

John lowered the mesh over my face, and his assistant pressed the hot plastic into every nook and cranny of my face, then started bolting it down to the tray I was laying in. I remained motionless for five minutes as it cooled and hardened. They complimented me for doing a great job. “But I didn’t do anything!,” I protested. “Exactly,” John said. “Half the people, when you tell them to stay still, start wiggling and bucking, and we have to try several times to get the mask right.”

They slid my tray backwards into the scanner for five minutes of whizzing, and it was over.

Well, over for me. Now a panel of analysts will pore over the data and come up with a precise plan of angles and dosages for the 35 radiation visits I’ll be making starting April 9. Those will be 10 minutes each, but on Wednesdays, those will be followed by a four-hour session in the chemo chair.

After it was over, Nurse Moon sat with me with for a while, not in any apparent rush. It felt rare to be dealing with hospital people who didn’t seem rushed. I asked a question that had been on my mind: “What if I had to interrupt the 7-week series for some emergency?” She stressed that that should not happen – it’s super important to get through the whole series no matter how painful it gets, no matter how urgent the reason.” But she also imagined that exceptions would have to be made in some cases, but it would be up to the doctor to figure things out.

Swallowing Therapist

I rushed from Oakland to Richmond to make my next appointment, with a speech pathologist. The meeting turned out to be not about speech, but about swallowing. That’s already somewhat difficult, as I can’t tolerate any bit of unchewed food in my gullet now, and to have to chew everything to a puree. But as the “sunburn” inside my throat gets more intense around week 2, swallowing is going to become a painful chore.

There are two reasons I might end up with a feeding tube implanted in my stomach:

1. If I lose more than 10% of body weight
2. If swallowing is simply too painful to be able to eat

Number one is usually a result of number two. They don’t have a lot of tools, but one thing they can do is to help develop your “throat structures” to make them as strong as possible. The stronger I can make my swallowing muscles now, the better an experience I’ll have when things get really rough. My exercises are things like pressing my tongue as hard as possible against the upper palate, doing head “sit-ups”, singing falsetto glides, etc. It’s a 20-minute set of exercises I’ll need to start doing 3x daily soon, and throughout treatment. Basically, physical therapy for my throat structures.

I finally got around to asking a question that had been in the back of my mind: “What would happen if I just didn’t treat it?” The answer was pretty much what I expected: The tumor would keep growing until I lost the ability to eat or to breathe, or both. And it would spread to other organs in the body, making treatment much more difficult if not impossible.

So I’ll be singing my falsettos.