These days I keep it on top of a bookcase in my office. No one seems to notice it, unless I point it out.
You might wonder how the mask was made. While lying on the radiation table, a technician pulled from water a white plastic frame shaped like a basketball standard, strung with a taught, rubbery mesh. He held the dripping frame over my head and in one motion pulled the frame down stretching the mesh over my face. He then locked the frame onto the table below. As it set, the mesh molded to my features—my face at that moment, like a death mask or a snapshot.
The mask kept me from moving my head, even a little bit, ensuring the radiation would land where required and nowhere else. The markings are reference points, the red line is the path. Behind it, I was protected from myself. It communicated to those on the outside how best to behave.
The CNS Phase of the protocol initiated my descent into despair. Somehow 8 doses of radiation to the brain alternating with 4 intrathecal chemo doses alongside the introduction of PEG-Asparaginase on top of all the other "regular" chemo goodies overwhelmed, bolted down, and immobilized me.
I didn't write about the mask at the time. I was decimated and unable write about anything. I haven't written about it till now because the experience has been too near or perhaps because I'm still wearing the damn thing. No one seems to notice, unless I point it out.
These snapshots (left to right, top to bottom) span diagnosis November 2008 to this summer July 2010. Allow me to unmask myself:
- I'm terrified.
- Holy shit, I want to die.
- How is it possible I am still alive?
- I am hideous, but the birds outside are beautiful.
- Who is this person?
- Maybe I will come through unscathed?
- Bilateral avascular necrosis in the hips.
- Every step is excruciating.
See the picture with the arrow? There. The light has gone out of my eyes. The mask has set.
After my last radiation treatment the team gave me the mask to take home as a keepsake. I carried it to the clinic where fellow patients, particularly those who had been through radiation themselves, looked on sympathetically. One ventured, "What will you do with it?" I said, "I don't know, maybe fill it with peat moss and try to grow some herbs out of it, like a Chia Pet." He laughed, then said, "I smashed mine into a million pieces with a hammer."
Yah. I'm not ready to smash my mask just yet, the experience is too near. I still need my mask to protect me from myself and let outsiders know how best to behave. Or is it let me know how to behave and protect outsiders from themselves?
Thankfully the CNS mask isn't the only one I own. I also have this delightful number. Cooling, soothing and though the color might contradict, completely radiation free. For those of you on the inside, well, you've always been on to me and the whole mask thing anyway.
44 days of chemotherapy including 1 lumbar puncture, 2 vincristine, 6 methotrexate and 30 6MP to go. 78 days to the first hip replacement.