Today, I borrowed a bike since my driving restriction may be a few weeks, a few months or a few years. Okay just one year. It's 2:30 in the morning and I am not tired and can't sleep but I still have a marathon training group to coach at 5 AM and so I guess I am particularly grateful for that Livestrong training because I am going to bike 10 miles, run 13, and then bike 10 back. If nothing else, brain cancer has made me a better athlete.
I sat with a counselor this week, the same one I've sat with for over a year, and part of the problem here is identity. My neuropsychologist has tried to point me in the right direction for a long time about how I "have so many gifts." That's not meant to sound as arrogant as it might but the problem is that I keep noticing the deficits, partly because I try to be an over achiever but also because it was such a huge part of my identity. I was first chair in trombone and still own it. I was in the bell choir. I was captain of the cross country team and ran from 3rd grade through college. But the two biggest part of my self identity have always been my intelligence/memory and my relationships and that's what this has taken away.
I traded emails with the new neuro oncologist today who is hesitant about me trying some new ritalin drugs to see if some of this comes back. Out of the 7 doctors who I've met with, only one thinks that's the way to go but... if this lowers my seizure threshold and if these arm spasms are being labeled focal seizures and aren't going to let me drive anyway, and if this has a possibility of bringing back some of those functions, why not take that risk? I can't do it on my own because you know there's that whole having a prescription thing.
I'd started cheating in one sense for the first time ever. I've had some teeth issues for a while now, over a year. They have finally started hurting bad enough to where I couldn't sleep and so I found the pain medication from the surgery and started taking it in the middle of the night the last couple of nights just to be able to sleep. A friend of mine brilliantly pointed out that I should go see the dentist so I did and let's just say that the dentist knows I have brain cancer and there was nothing much he could do that was realistic financially but also told me what it would take to pull out my teeth which is probably the route will go. He prescribed me some antibiotics and some pain medication and said he hoped that would buy me more time but he becomes doctor number 8 in the last month. I mean there's a reason Maslow has his hierarchy of needs.
But that theory on the hypothalmus and how I've made some memories better than others has me intrigued. I keep trying to solve the puzzle and try to ignore the fact that recognizing the problem may not mean there's a solution. There are diagnosis, ie brain cancer, which may not have a cure. But let's look look back at what I have kept, a big coping mechanism of running (a gait analysis today shows that my right side walk is still weaker but that once I pick up the speed it's back to normal). That's in a different part of the brain. I listen to music a lot which is the opposite side of the brain. I still use humor which is the left temporal lobe but closer to the front, not the center.
I've started to acknowledge this to a few people I trust and a few people who should know. Kiana has new teachers in kindergarten and in after school care. Her kindergarten teacher I have spent time and it took me a week but I nailed her name down. Her after school care teachers, I trust her director and there's been a couple of times where she's said, "we already had this conversation" so I told her that my auditory memory isn't what it hasn't been and she made some notes about Kiana's 2 new teachers (it tells you something about my daughter's daycare that the descriptions for each were mohawk and tattoo). And then tonight, I went to a party that combined the cancer and running communities (how could I possibly not fit in) but there, one of the people who I've acknowledge this to, my friend Megan went and was incredibly gracious and said hey you remember my friend Meredith who you met etc... Part of the challenge of having been front and center most of my life and having been relatively comfortable with it is that the main skill that got me there was that I cared about people but the other was a pretty high face name recognition. Without me admitting it, this has not been picked up by old friends because I do recognize them but as I sit here and try to accept it more, they are being helpful.
As I left the dentist and stopped by Kiana's daycare to finally ask the director for their names with some cheating cues (I'd ask them a couple of times and after a while it's embarrassing so I try to find cues or pictures of people who I should remember and study at home, trust me facebook is awesome for this skill), I walked out and Kiana gave me a gigantic hug. She was playing with some colored water and poured it into my hand and told me to drink it because she made it so I could live forever. She got a bigger hug back.
I don't know what's coming or which doctors or prescriptions or driving restrictions win. And there may not be a magic potion that gets anything back. But I am not done trying. It's going to cost me a tooth but I'm still going to try to nail it.