Category: Uncategorized

My Radiation Dose Cloud

Say hello to my dose cloud. I believe the red outline is A-A-ron’s cavity, where he is no more. The green outline around that is where there is healthy brain that needs to be protected. The red shading is where the radiation is targeted. That must mean that A-A-Ron’s remainder sits between the red line and the green line near that red dot in the lower right of the cloud…which would make sense considering they took out 80% of him. They radiate the cavity in case there are microscopic cancerous cells in there that might grow in the future. The place where the red and green outlines cross is an example of doctors making trade-offs to get as much of the cancerous cells as possible while saving as much of the healthy brain cells as possible. I assume that any shading outside the green line is more of that. More things I never expected to learn in my life!

Successful first week of radiation and chemo with minimal side effects. 5 more weeks to go!

Randomness

I am still kicking. Haven’t been feeling much like blogging as things have just been stagnant. For over a month we’ve been waiting for insurance approvals. That means lots of Law and Order marathons…and then the denials. I am explaining it as follows – my doctors requested the A+ treatment and the insurance approved the B+ treatment. So I’m not getting bargain bin clearance radiation, but I also not getting what my doctors recommended. Such is the American healthcare system. Both radiation and chemo begin in two days. Radiation is 6 weeks. Chemo is 12 months.

In more amusing news, while I sometimes forget I have my left eye blind area, I am reminded when I read things in my environment and they seem a little off. For example, I was in a CVS a few weeks ago and I looked up to see a big sign on the wall that said “Racists that care”. Clearly it didn’t actually say that on the CVS wall. It really said “Pharmacists that care”. I just had to look further to the left to see the whole thing. Last week, I read a newspaper headline that said “Slim man and Jewish woman pray together”. That seemed off to me, so again I had to look further to the left to read that it actually said “Muslim man and Jewish woman pray together”. At least the world continues to amuse me in various ways.

Braille anyone?

I’ve been thinking a lot lately about how to stimulate my silly brain to prevent it from getting mushy from all the fun upcoming therapies. I decided to use language in addition to playing the piano. First up is Spanish because at least I have a head start from back in school. My dad has the Rosetta stone for Spanish and my cousin is already fluent, so I have practice options. This should help me start filling up the grapefruit. The other day I got the idea to learn Braille because my eyes get strained fairly easily, but also because the tactile stimulation should activate additional pathways in the brain. I have no idea how someone goes about learning Braille and now it is something I’m slightly fascinated by. It’s not really something you can do on a standard computer, right? It requires actual physical bumps on a page right? I must make a trip to a book store or a library to investigate this. For now, I’m imagining the options while I picture Denzel reading the Bible in The Book of Eli. Interestingly, if you Google Braille, the first thing that Google shows after the solo word is “Braille on steering wheel”. Now that’s unexpected. Apparently back in 2009 people were discussing whether Braille appears in some vehicles. Someone else in the human factors community definitely knows more than I about what is going on with regard to research in that area…it certainly is an interesting thing to ponder, especially as we move toward self-driving cars…I wonder if being able to read Braille will somehow be a good zombie apocalypse skill as well…

Life’s little (or big) coincidences

Yesterday I was sitting in a mall people watching, like I’ve done a million times before. Except this time my mind was focused on something different. I was thinking about how many of those people walking past me have some kind of disability and how many disabilities are not visible to the naked eye. Almost twenty years ago, when applying to graduate school, my plans were to do research on and design technologies to support people with disabilities. I was heavily influenced by one of my best friends being in a major accident and wanting to change the world for people who had different abilities. Once I got to graduate school, my career took a different path and I wound up working with different populations/user groups. Yet now, my life has come full circle and I find myself IN that original group of people I was focused on. Isn’t life interesting?

I know that I look the same as I did before part of my brain was taken out. I still talk the same, I have the same sense of humor, I am still the same person (well, now that I’m off those damn steroids). Yet I am not the same person. My vision is blurry. I can’t see to the left at all. My cognitive processing is a bit slower and I can’t multi-task nearly as well as I used to. I definitely won’t be driving anytime soon.

If I were one of the people walking by me in the mall, I would not have picked me out of the crowd as someone who has a disability at all. And I reminded myself that just because someone isn’t in a wheelchair or some other recognizable tell, it doesn’t mean that they aren’t dealing with something incredibly difficult every single day of their lives. And in that moment, sitting in the mall yesterday, I appreciated my life that much more. We’re all awesome in our own ways.