This student, studying Radiation Oncology, was curious about my seizures—which I don’t mind discussing at all—and asked me if anyone had ever told me how very unusual my seeing words on things is. I had NOT been told that. I can’t help but laugh as I think this is why they are in training. “Don’t tell them they’re weird.” “Oh- check.”
While I am perfectly content to lie in an MRI tube, I hate and detest my motor skills testing. It is extremely simple and annoying—and I am terrified that I will get it wrong. It involves a lot of tracking fingers with my eyes, standing on one foot, etc. Mark told Dr. G how much I hated these tests recently and he kindly explained the purpose of each one as we did them. I now hate them (somewhat) less and fear them more. Should my outstretched hands part while my eyes are closed, I now know the connection between my right and left brain is possibly weakening. Great.
On this visit I had additional testing that was more specific to memory problems caused by radiation (my student’s specialty), and anti-seizure drugs. Panic swept over me as I was asked to memorize words. She took a round object out of her pocket and asked me what it was. Perhaps a minute later, mortified, I came up with “penny.” It was crushing. *sigh* However, I “passed,” and I simply have to remind myself that it isn’t my brain malfunctioning, it is just the drugs slowing me down. Stupid quality-of-life enhancing drugs messing with my quality-of-life!
Although I’m stressing the negative, there actually was a reward waiting to come from this girl’s presence. At the end of my hated tests, prior to fetching Dr. G, she did a quick recap and said that they’d probably see me again in 3 months another time or two, then bump it out to 6 months, then maybe longer. Her assumption, in other words, is that I’m going to stay stable for long periods of time. This is a refreshing thing to hear in that office. Of course we don’t know. Ever. There is a sleeping bomb in my brain, but it is sleeping. And it was cool to hear this girl blithely discuss it like, “of course it’s going to keep sleeping”—even if she never actually said that.
So, the fall check-in is complete, and I need not go back until the winter!
My mother recently told me about an experience she had telling someone about my condition (a thing she rarely does). The person was very upset and sorry for her, and she was compelled to spend the rest of the discussion explaining that I’m really doing fine, that you would never know I’m sick, that I’m working, that I’m “just like everyone else” and going about my life. I have the opposite experience. When I tell someone, surprisingly, usually the first thing they say is, “But you’re fine now, right?,” followed by “But you’re in remission, right?” and so on. The tone of voice is generally a demand. I’m put in the position of convincing people I’m sick. My mother is convincing people I’m not. She isn’t wrong, but neither am I. Friends say to me, “now that you’re better…” or “back when you were sick…” Am I well? Do I want to claim that I’m not? What am I?
I am as sick as I’ve ever been, and I am as well as I’ve ever been, since Lloyd was diagnosed in September of 2008. I have had reactions to drugs, adjustments to a new world order, and recovery from a phenomenal surgery. But my incurable brain cancer is exactly the same now as it was then. I am no better, no worse, and no different. I hope to stay this way indefinitely. As long as I do, I plan to chill out until I don’t have that option.
I am Kristina, and I love Mark. I love my family and friends, the woods, tidepools and streams, and the helplessly inept Doves that nest on our porch. I love my life.
Love, -Kristina
Nathan came to Baltimore for a rumpus with Aunt Kristina and Uncle Mark.
