The steroids have me back up in the middle of the night and this morning I started running through a list of human factors issues we’ve dealt with during this ordeal.  As I said before, I’ve seen lots of things from the outside in over the years doing user research.  Living IN them in a whole different experience.  Here are a few fun ones since we’ve been here in Philly doing the radiation and chemo:

• I swear the town we’re staying in has mixed up all the traffic signs to mess with me.  The regular green and  white street signs are gold and blue. There are hospital signs that are yellow and black like deer crossing signs. There are also red and white hospital signs. I have yet to see the standard blue and white H signs. My wonky eyes already have difficulty processing, so this just adds to the amusement.
• I know that Enterprise software systems rarely talk to each other and share data. We’ve experienced this multiple times over.  The healthcare part of insurance and the pharmacy part of insurance have given us the run around multiple times because of miscommunication between what the doctor is prescribing, which pharmacy is dispensing it, how many pills are dispensed, when we are allowed a refill, etc. I have a pharmacy support person and a healthcare support person, both of whom we’ve had to call on multiple times to sort through the various prescriptions and treatments.
• At a single  doctor’s office, it turns out that even though you have an appointment for labs and the doctor each week, there are multiple sign in systems and the lab can only call you if you are signed into their system but the front desk doesn’t necessarily know this, so the lab people have to wander around looking to see if they can grab the patient prior to the doctor appointment. Ah, the reality of workarounds. This, of course, has resulted in us and probably many others just sitting around waiting for no real reason.
• Also, we get these printed sheets of all my appointments that are completely useless.  They are many, many pages and trying to actually find the time of my appointment in them is just silly. The nurses printing them out just shake their heads and smile because they feel our pain.
• I’ve learned medication management is a nightmare, especially when you’re on 6 different medications, some requiring food, some requiring an empty stomach and some based on some other parameters.  It is hard enough for Mom and I, so I can only imagine an aging couple who are working with both of their  medications at once.

I certainly have a much better appreciation for all of this, even though none of it is surprising to me. Plus, we’ve only got 2 and a half weeks of radiation and then most of these issues will go away altogether anyway. 🙂

I’ve been amusing myself with making lists of things that are probably out of my future career or hobby options.  For instance, it is unlikely I will be judging any graffiti contests, probably not becoming an uber driver, and professional Where’s Waldo finder seems to be out. I’m probably not going to edit action movies or monitor security cameras. Crossword puzzles aren’t so easy anymore. Sewing/knitting/crocheting or anything of that nature is not likely. Pretty much anything that requires split second reaction times or attention to fine detail is probably out.  This just forces me to be a little more creative in considering my options. Things that don’t necessarily have strict time limits. Things that are perhaps music or art related, though I’ve never really thought of myself as creative in that sense. Guess we’ll have to see. Perhaps A-A-Ron was suppressing my Picasso or Beethoven skills all along. I am not holding my breath on that, but I’m willing to test the waters. Worst thing that can happen is I try and realize I’m as terrible as I thought I was.

And of course, the neuro-ophthalmologist could tell me this week that my vision will be back to normal before I know it and this will all be moot. Who knows!

In the meantime, I’m taking suggestions if anyone has any for other activities.

Maybe humbled isn’t the right word.  Learning new things. Having aha moments. Being challenged in an educational way. I just like those moments. This entire brain tumor experience has been a continuous learning experience.  I’ve learned about medical insurance. I’ve learned about the amazing resources they have for people who are dealing with these issues (the American Cancer Society Hope Lodge or as I affectionately call it the Cancer Condo – check this out if you aren’t familiar with it..free facilities around the country). I’ve learned lots about my brain and cognitive functioning in general. I’ve learned about all different kinds of cancer, all different kinds of therapies that people undergo. I have started working on my Spanish lessons and learned I might actually be able to roll my r’s if I don’t overthink it; though I have yet to find a book store that actually has a book to help me on the Braille side.

I’ve observed how dramatically differently people in my life have handled my diagnosis and experience, how people in Mom’s life have handled my diagnosis and treatment and her role as a caregiver, how other patients and caregivers here at the cancer condo are dealing on a daily basis. It is very interesting to see how some people surprise you in both directions. It makes me think about how I would handle the situation from the outside as opposed to the inside or how I would have handled this 20 years ago.  The young folks here in there 20s are the ones who I feel humbled by. I feel I’m doing fine and that my old age of 39 brings me wisdom, and yet, I’ve only been dealing with this for 4 months.  They have been dealing with their issues for years, when teenagers, before they really got to live their lives. They’re getting transplants and immuno-therapies and that is the only life they have known. That is certainly not something I have any experience with…and it makes me think that I have more to learn from them than I realized.

Today marks the first day of Summer and the halfway point of my radiation. So I put on a summer dress and we’re getting Insomnia Cookie Ice Cream sandwiches are we kill off some A-A-Ron cells this afternoon. Take some time and do something good for your brain cells today!