There’s so much that has happened that it’s not possible to do a proper blog post for each. So, please forgive me as I do a bulleted list for things that deserve more time and attention.
- We traveled to Hilton Head for Thanksgiving to be with Tim’s family. We had a raucous, good time with good food and wonderful people. Phenon did fine – she spent most of her time painting nails of family members ages 4 to 80’s, playing with hairstyles and hats, and making place cards for all in attendance at Thanksgiving-on-Friday. Rowan had a terrific time playing on the beach with cousins, capturing (and releasing) hermit crabs, riding a bike, co-coordinating (with his cousin Lily) art-work for Thanksgiving dinner, and copying mazes for all of the children to complete while waiting for dinner. We all competed in the traditional Connect Four tournament. Tim came in second to his cousin Caroline, who won handily and elegantly, despite Tim beginning their match with a low blow! 🙂 (he said something along the lines of “Be sure to try your hardest, even though my daughter, who has cancer, is sitting on my lap right now.”) I knitted as I socialized, and finished a number of hats on the long, long drive home.
- When we got home, there was another round of presents and packages. I wake up in the middle of the night worried about remembering to thank everyone for their generosity. Last week, Phenon’s elementary school teachers (Go Forest Knolls!) sent her a very generous gift card and a hand-crocheted blanket. The blanket was not attributed to anyone, but it is a beautiful piece of work. It is truly gorgeous and she loves it SO much! She also got lovely original art from the Lumias, and a thoughtful and wonderful gift of books from her high school age babysitter from when she was three (Amanda is now a gorgeous, grown woman who is changing the world for the better through her marvelous work). Also, a thoughtful gift from friends of my parents who attend JHU adult education classes with them. Matthew and family sent hats as well that were waiting for us when we got home. Thanks everyone!
- Phenon started round 2 of chemo today. Hospital math was a little more reasonable today. We left the house at 7:37am and returned home at 6:52pm. It was supposed to be a six to eight hour day of chemo. Phenon has gained three pounds (hooray!). They added a new anti-nausea medicine, supposed to be a heavy hitter, and we have a stronger medicine for home as well. They also added an extra steroid that can reduce nausea and increase appetite. They took benadryl out of the regimen, because it appears her allergic reaction to the etopophos is mild – but boy did she sneeze throughout the one hour administration. She preferred to not be made sleepy, however, so that was better to her than getting knocked out for the day. I also asked about the PANDA program that our friend Jeanne told us about, and lo and behold, an acupuncturist stopped by at 2pm, during treatment, to help her out. Phenon had her first acupuncture treatment. She was unimpressed. She found the needles painful and uncomfortable, although each time the acupuncturist asked, she said they were fine. The goal of the acupuncture treatment was to reduce nausea (apparently most effective if treatment is done before nausea kicks in) and to stimulate the immune system. Phenon would like to not do acupuncture again. Sigh. I was hoping this would be our key to staying out of the hospital this time.
- Last but not least, hair. Phenon’s hair had been falling out pretty steadily for about a week, but in fairly small quantities. But last Tuesday, a week ago, her hair began falling out in large chunks. Pony-tail size chunks. This is how much fell out in about one hour on Tuesday morning.
- By Wednesday night, Phenon’s part was strangely wide, and she was starting to get bald spots. That was exactly enough of that. She decided it was time to shave her head. Phenon put her hair in a pony-tail and Tim cut it off. Then he used barber-style clippers on her head. This was very unpleasant, as Phenon’s head had been feeling tender and sore for about a week. But she got through. She was sad, and cried some throughout this process, but was generally fairly controlled. Until she looked in the mirror. I’ve never seen such devastation and anger and dismay in her face. It was horrible. There were no words to comfort her, so we just held her until the sobs stopped wracking her body. Then Phenon got in the shower. About half-way (this was a serious shower – half-way was about 30 minutes in) through, she started singing. Then she asked for advice on shaving her head with a safety razor to clean up the stubble that was left. After an hour, she got out of the shower fairly cheerfully. Phenon looked in the mirror again and said, very matter-of-factly, “That was a very surprising thing to see.” Then, “I think I can actually kind of pull this off! It’s not as bad as I thought it was going to be.” Within an hour of that, she had posted this picture on facebook.
- That seems the very definition of resilience to me. It was awe-inspiring to watch the adaptation and transformation. She traveled to Hilton Head bald and comfortable in the car. Outside of the car, she put on a hat. Phenon’s new wig (from hatswithhair.com– thanks Megan and Aunt Pudgy!) arrived on Friday and she spent most of the rest of the weekend experimenting with hair styles and putting on different hats. Here is some of the parade.
Today Phenon spent half of the day comfortably bald in her chair, holding court with different nurses, doctors, and the acupuncture guy.
When she went into the hallway, she put on her hair, or a hat, or both, but didn’t bother in the room, because it was more important to be a comfortable temperature. She has decided that losing her hair isn’t such a tragedy. The worst part of cancer, it turns out, is the nausea. Or the low neutrophils. Or a tie between the two. But the hair? She can totally rock the bald or the wig, and neither is so scary, after all.