We don't know what we don't know... and it's amazing.

I tried to explain to Noah what genes were the other day.   We talked about hair color and eye color and height and even personality.  I am pretty sure he understood the inheritance part of it, but kind of glazed over at the uniqueness of each human and how they have their own beautiful
 code.  I guess I can't blame him! Many of you have been asking if we heard back about the genetic marker and we hadn't.  I felt like it had been long enough and so I got back on the phone with Upenn yesterday and asked them to hunt it down.  The nurse practitioner I usually work with was on vacation but someone finally found my file and started looking for me.  As it turns out it has been sitting in my file and I am genetically co-deleted.  I really understand very little about this except that it is something that works in my favor.  This is the outcome we wanted for the genetic test and it took a little while to sink in yesterday but when it did I was soo happy!  The person I spoke with told me that this outcome means that the type of tumor I have statistically responds better to chemo and to treatment in general.  It also means that statistically people with this codeletion have a better prognosis.  The more I read it was clear how little the researchers understand about how and why this genetic marker makes a difference.
It remains a mystery to me how little we know when we study so hard and work so diligently.  When you think how many years doctors spend in study and practice and how long scientists spend testing and analyzing it baffles me how little we really know.  I mentioned that to someone yesterday and we were talking about how overwhelming it would be if we could see the whole picture and I was grateful for my limited view. I suppose there are some things we wish we could know about the future, but my hope and prayer is to be present in this moment and to live this day the best that I can.  I remember a youth ministry conference I was at many years ago and the speaker said that it is important to make it memorable.  To be as silly or ridiculous as you can and let down your guard in order to encourage those you were working with to mark that moment in time as something worth remembering.  I have vivid memories of putting 50 clothespins on a kids face, of ambushing teens in their beds before dawn, of teens putting a fart machine under my chair in the sanctuary on a Sunday morning.  There is no part of me that thinks that every second needs to be a big fanfare, but as I view my life with different lenses I am more aware of how much time I spend in the mundane, completely unaware of those around me and of my desire to create memorable moments, or even feelings of joy and love that will last and will impact the big picture.    So I guess on this lazy Saturday morning I can be grateful that I have a codeleted gene I never knew about and I can know with surety that God knew and be at peace with that.

Health-wise I feel about the same.  I walked right into someone on my left last night at school and neighbor who knows my story just started laughing.  The doorways are still all placed right in my way as well.  I spent too much time being angry at my iPad last week, blaming my cheap keyboard on my frustrations but when I decided to sit at our desktop computer I realized that it is my ability to type that is off.  I can still type, but something isn't quite right and I haven't determined what it is yet. Noah is practicing typing for school and Paul wants me to play the typing video games to relearn that memory piece.  My gray hair is multiplying at an exponential rate and though it isn't fun to look at in the mirror I have no problem smiling and knowing it's just hair. My headaches have subsided quite a bit, however by about 3-4pm I am completely wiped out and need to lie down.  So, all in all, life is great.

This week will be a big week as we meet with our new neuroncologist here.  I can't say his name so I have to keep looking it up (He's Polish which should make my mom's side of the family smile!).

(link to my doctor)http://www.seattlecca.org/doctor/maciej-m-mrugala.cfm I also read that the type of chemo often used for the type of tumor I have is a pill form which I'm really hoping for.



I'll leave you with a quick video that showed up in my news feed this week on Facebook.  It's been the rainiest week since I've been here, full of clouds and fog.  From my viewpoint it seems like it would be the worst time ever to go up the space needle, but with a different view, isn't it amazing?