Flying solo today

So Jen had been trying to get to San Jose, CA for a business trip for the past couple months. On the first try, her flight out got cancelled, then the flight she was rebooked on was cancelled, making her miss the meeting she was going out for. On Tuesday, she was on an early morning flight. After they boarded, the pilot noticed a cracked windshield which took an hour to repair, pushing them back so far that she missed her connection. She got on a later flight, though, and did make it to SJC later that day. She had planned to take a redeye from LAX to BWI last night, arriving at BWI at about 6:15AM. Problem was that she was never assigned a seat on that flight, and sure enough it was overbooked. She got bumped, and spent the night in LA last night. She lands at BWI at about 4 this afternoon, which means I'm flying solo through treatment today.

It's gone very well, at least that's what the nurses say. I only now just woke up from my benadryl haze! Blood work looked good, everything's going well!

We're working on the insurance approval for the SIR-spheres and the off-label Erbitux, and we're going to get to learn the appeals process at BC/BS. That leads into my latest rant...

Please, please, please, please, PLEASE call your congressman and senators and ask them to vote against the health care reform bills going through congress now. I'm convinced that had I been diagnosed and treated while they are in effect I probably wouldn't be here right now to write this post, and here's why.

All the bills floating around now have provisions for "best practices panels" or "cost reduction panels" or something like that. The problem with these panels is that the cutting-edge treatments, my Erbitux and SIR-spheres, definitely fall outside what's considered "best practice" for my diagnosis. This means that as the regulations and taxes imposed drive the private insurance companies out of business and all we're left with is the government funded insurance, I would not be able to get these treatments. This is an example of a "reform" that sounds great at first read to a politician or constituent, but that has very serious, far reaching consequences to those of us with advanced cancer that aren't looking for the extra 6 months of life but a cure. There's probably no problems with the bread and butter medicine outside the cancer world, but I know that from where I sit it has some chilling consequences.

To anybody that thinks my judgement is a little clouded, look at the cancer survival rates in Britain and the U.S. Also, Erbitux is not covered under the British government health plan as it's too expensive for the statistically calculated benefits it provides.

The problem with best practice treatments in the cancer world is that they're all based on aggregated patient statistics that look at the median survival time of patients on the study. My issue with that approach is that I get lumped in with the 75 year old diabetic smoker in the statistical population. In every study, there are several outliers for whom the treatment worked fantastically well, but they only serve to shift the median a little to the right. Government medicine based on these statistics misses the outliers like me, essentially passing along unnecessary death sentences.

Please feel free to plagiarize anything I've written here in your letters and phone calls to your representatives, but please, for my sake and for the sake of all of us in the chemo wards, radiation rooms, and surgical suites, get in contact with them.

/rant

I finally downloaded "Not My Time" by 3 Doors Down last night, and remembered what an awesome song it is. Here's the lyrics to it:

Looking back at the beginning of this, and how life was
Just you and me and love and all of our friends, living life like an ocean
Now the currents slowly pulling me down, it's getting harder to breath
It won't be too long and I'll be going under, can you save me from this

Cuz it's not my time, I'm not going, there's a fear in me, but it's not showing
This could be the end of me and everything I know
Oh, I won't go

I look ahead to all the plans that we made, and the dreams that we had
I'm in a world that tries to take them away, oh, but I'm taking them back
All this time I've just been to blind to understand, what should matter to me
My friend this life we live, it's not what we have, it's what we believe

It's not my time, I'm not going, there's a fear in me, but it's not showing
This could be the end of me and everything I know

There might be more than you believe,
There might be more than you and me,
There might be more than you can see

Cuz it's not my time, I'm not going, there's a fear in me, but it's not showing
This could be the end of me and everything I know
It's not my time

Thanks again for all your prayers, thoughts, and comments!