Summit Leads To Эпоха застоя

It was Always Sunny In Philadelphia until the last day of the conference and the 5K which is why Steph appears to be frozen in this shot.

We spent last weekend at the National Brain Tumor Society Summit in Philadelphia.  It is the annual meeting of the NBTS - part scientific conference part networking opportunity for patients (or "survivors" in their lingo) and caregivers.  We did learn a few things and connected with some very nice people but I left feeling dissatisfied - my perspective hasn't improved significantly but it hasn't gotten worse either.  Stagnation.
I'm not sure what I expected, certainly not a miracle cure that had somehow eluded me before, but I wanted something - some kernel of hope, some promising procedure that I hadn't come across yet - and unfortunately, that simply doesn't appear to be out there.
There is a lot going on particularly in the form vaccine based approaches but these are years off from being viable treatments.  (Not to mention the fact that all of the cutting edge science is currently being held back by the financial problems that are plaguing the economy as a whole.)  Over the course of a few days, it became very clear to me that I'm back to where I was a year ago - staring down the barrel of whole brain radiation.  I still feel pretty ambivalent about this although we did meet an excellent neuro-oncology nurse and researcher who said that only between 5 to 10% of whole brain radiation (WBR) patients come out of it with permanent deficits.  And to go with the whole "the median is not the message" approach the Dr. Servan-Schrieber preached, my chances should really be better than that given that I'm young, strong, and have no other chronic health problems.  But you don't get any guarantees when you expose your entire brain to enough radiations to kill cells.  It's just flat out dangerous and risky and an extremely tough decision to make given that I still feel remarkably healthy.  The very same neuro-oncology nurse with the positive stats on how most patients fared post-WBR did echo something that I've felt for a long time - that in ten or fifteen years, we will view WBR as something akin to blood letting and leeches - "Can you believe we actually did that to people?"  
I met remarkable people persevering through some extremely difficult situations.  One woman ( a true "survivor") gave a pretty funny talk about her own experiences with brain cancer featuring her own top ten list of what not to say to someone with brain cancer - my two favorites being "Wow, you don't look sick" and "Yeah, I'm getting a little absent minded myself."
Ok, so what is my hang up with "survivor"?  If you know me, you know that I firmly believe in keeping a sense of humor and a positive outlook.  I don't see any other option really.  If I dwelled on the stats and the odds,  I wouldn't want to get out of bed.  But "survivor" just feels like a suit that doesn't quite fit.  Firstly, we're all survivors in the sense that we're all still enjoying the gift of life on this earth and we know that won't always be true.  Of course, most of us keep this most obvious fact buried deeply in our mind (not quite as deeply as the tumor in my corpus collosom) because it's not a very fun fact to confront but still, we all know this is the case.  Secondly, no one ever gets clear of brain cancer.  The five year mark over remission that marks the "cured" date for most cancers doesn't apply for brain cancer.  I think of it more of an ongoing process than a milestone that can be achieved and then I can relax and say, whew - I'm so glad that is behind me.  That just is not the case with brain cancer yet.  All of us - even those who have been cancer free for years - still live MRI to MRI.  It is something that I still struggle to fully accept and comprehend but I think it's important.  So, I honestly would rather think of myself as a lifetime patient making the best of a hard situation than a survivor with an asterisk.
One a positive note, we loved Philadelphia which somehow we had never managed to visit despite the fact that it's an easy two hours from Washington.  I can still get pretty fired up about standing in the room where the Declaration on Independence was signed and the Constitution drafted.  The whole city is so rich with history that I know we'll need to back someday.
The whole thing ended with a 5K that Steph ran and I was her cheering section.  The race was huge, over 6,000 folks (most walking).  She ran great - finishing 54th or as I like to look at it, 1st among all runners west of the Mississippi.