Marked Up

She’s a bit self-conscious. It’s an unusual state of being for her. In preparation for radiation therapy, the technicians have drawn several alignment guides on her face, neck and abdomen … in permanent ink. She is not allowed to wash them off. In fact, the marks are covered by clear adhesive tape to prevent fading. And when they fade on their own during the next six weeks, they’ll be redrawn again because they provide critical information to ensure that the beam of radiation hits the right spot. That’s right, she’s going to have purple ink lines on her face for the next six weeks. She’s handling it well, but she wore a hat to school today. She told me she was afraid the other kids would make fun of her.

I previously posted that the process would begin on Tuesday. I was only half correct. While technically, the process begins Tuesday, she won’t receive her first dose of radiation until Wednesday. Tuesday is a simulation designed to see if Jordan can get treatment without sedation. If she can hold still on her own for the two-minute test, we’ll proceed without the drugs. It is obviously very important that she remain still.

Once the treatment begins, continuity will be essential. The whole process is choreographed to ensure she receives the optimal amount of radiation to affect the tumor – and that means she won’t be able to skip days. Even if her blood counts drop, the team will suspend chemotherapy and order blood transfusions before they suspend radiation therapy. This will create a new burden for Jeanette, as she and Jordan will be making the cross-town commute in mid-day LA traffic more often than usual.

We’re mostly ready. We’re slightly anxious. And we’re all staying optimistic. I feel bad that Jordan is worried about how she looks. Throughout her long journey with the disease, she has always maintained phenomenal self-esteem. After brain surgeries she would proudly show her stitches and scars to anyone who’d give her an audience. When her hair was thinning she wore it well and didn’t hesitate to tell people how glad she was that she kept most of it. But today, she wanted to hide and she was worried about what people might think. I told her to think of the ink like war paint. She always liked Pocahontas, so I told her to imagine she’s following the tradition of the Native American people. She’s painting her skin to scare the cancer away. I also told her that no matter how much they mark her up, she’s the most beautiful girl I’ve ever seen – more beautiful than Pocahontas or any other princess out there. And she is.

[P.S., I asked Jordan if she would mind me sharing a photo of her in her war paint. She said, “why not?” and gave me a nice thumbs up signal when I pointed the lens her way.]