Radiation began Monday, and we think it’s going to be fine. The staff are amazingly solicitous and lovely, and they provide lots of candy for each accomplished event. Seriously. Last night, three different staff members ran to Phenon with tootsie pops after radiation was finished. Then a fourth asked her about her favorite kind of candy. Phenon had a very difficult time thinking of a favorite, but was pushed and pushed, so finally she said, “Reese’s peanut butter cups.” The technician exclaimed, “Yay!” and ran away, only to return moments later with the very same. My goodness. There will be no problem with weight loss during radiation!
The first night of radiation was an ordeal. They were having problems with their computer, and the lining up of Phenon with the xray on which they made the radiation plan. See the laser levelers like you use to hang a picture in your house? That’s what all the flourescent pink lights in this picture are:
They kept having to tilt the table, or the cushion she was on, by one millimeter at a time, and then the stupid computer would re-set the original settings and they would have to start over. So her half-hour appointment turned into three full hours. This would not have been a big deal, because the staff are fun (and, don’t forget, they bring candy to EVERYTHING), and they play music throughout, and generally try to make radiation as much of a party as they can. However, to get Phenon’s head positioned properly, she has to wear a mask. And that mask was jamming the head “cushion” into the back of her head for more than an hour. And it gave her a horrible, terrible, no-good, rotten headache.
To me, this mask looks horribly clausterphobic, but Phenon said it doesn’t bother her and it’s generally comfortable. For a few minutes. But the mask does leave funny marks on your face and head, just so you know.
They also have to draw lines on you in sharpie to make sure they are sending radiation to the EXACT right spot. Good thing it was wacky day at school on Tuesday – that’s how she explained the sharpie lines she couldn’t get off with alcohol.
The lines on her throat are special. They are to line up the block over her vocal cords. Originally, Dr. Talk told us it wasn’t an option to cover Phenon’s vocal cords for the radiation because you have lymph nodes right behind your vocal cords that you want to hit with the radiation. If you cover the vocal cords, you increase the chances that the cancer comes back there in a more aggressive, bad-ass fashion. But we pushed and pushed on that, because he also indicated that radiation can cause permanent damage to your voice. We were agonizing over the thought of damaging her voice forever (some reports I read on the, ahem, internet, indicated discomfort in speaking voice that happened after talking for just a few minutes) only to learn in 10 years that radiation was unnecessary for people in Phenon’s position. That was intolerable. So, we kept pushing. Finally, Dr. Talk came to a compromise. They do radiation from the front and the back of her body, so they decided to shield her vocal cords from the front, but still do radiation from the back – that way they can hit the lymph nodes that are behind the vocal cords, and thus NOT increase her risk of the worse cancer coming back there. Her vocal cords will still get radiation, but only very small amounts, which should end up making no detectable difference in her voice.
In the end, Phenon got through the first night of radiation, but it was worse than she had hoped for. But the actual treatment was not painful, and we were able to get home by 8:30pm. At which point I promptly passed out on the sofa.
The second night, WE were the problem. We had a series of minor delays that added up to a major delay getting to the hospital (for example, Phenon spilled apple juice all over her clothes so badly that we had to stop and get her new clothes!). But the staff were accommodating and kind (didn’t seem to reduce the candy offerings at all!), and the treatment took only about 30 minutes this time. They said it should genuinely be 15 minutes by the time they get the routine down, hopefully by the end of the week.
Phenon has radiation every weekday until March 26, which is the last day of treatment. Really, really, really looking forward to that.
In other news, the Make-A-Wish team came to our house on Sunday afternoon. This was very exciting. We got the sofas cleaned so our little dog’s bladder issues wouldn’t be so obvious and the MAW team would have someplace pee-free to sit! The team (Linda and Tina) were lovely, and came bearing presents for both Phenon and Rowan. They had a nice long chat with the us, and Phenon settled on a request for a Royal Caribbean cruise on the Oasis of the Seas boat (zipline on board! Teen “neighborhood”!) to the Western Caribbean (Mexico, Jamaica, Haiti). Day trips to Mayan ruins, swimming with dolphins/sea lions/turtles/horses, snorkeling, glass-bottomed boats, and a helicopter ride for an aerial photography session. Plus, Phenon added on a request for an extra day in Florida at the beginning or end to see our friend Janet’s art studio and to visit with Don and Janet. Hooray! They also asked her to make a back-up wish, so she pushed for a week at the beach with her 9 closest friends (plus one for Rowan), even though bringing friends along is against the rules. We pushed for additional adult chaperones if that’s the wish they make an exception for and grant it. It is NOT my wish to be alone at the beach with 10 teenage girls and 2 pre-teen boys. Seriously.
Finally, the chamber choir website has some audio of the Dallas performance accompanied by a slide show of the trip. Phenon had a great time!