Friday, March 28, 2014

How Many Oncologists Does it Take to...

Seriously! How many oncologists does it take to figure out a course of treatment? As soon as you go beyond 1, the question becomes impossible to answer because there's no way any 2 oncologists can come to a consensus on how to treat cancer that doesn't follow "the script." The sad fact is that despite billions of dollars spent on "research", when you don't react as expected/hoped to the standard treatment protocol, they just don't know.  There is no right option so I'm left with a handful of different opinions on how to proceed. Every time discuss treatment with one doctor, they take the suggestions of the others to task: "While I respect Dr So-and-so, that just doesn't make any sense" or "Dr So-and-so is an idiot. Why would you do that?"  So helpful.  So I just have to pick one and hope I choose wisely?  Wow

We had it narrowed down to a clinical trial at Columbia combining a newer drug (Brentuximab) with more chemo or Proton Beam Therapy (focused radiation) at Penn. We eventually decided on radiation because that offered the only chance (outside of another transplant) to possibly cure this permanently. Not much of a chance (10%) but still better then the other options which would just put it into remission for n months and then we'd have to do more treatment when it inevitably comes back. The only issue with the proton radiation is that it has not been widely used for Hodgkins and insurance companies don't like to cover it...naturally.

While waiting for a determination from the insurance company on what treatment they will cover for me at this point, I'm just sitting around growing out my cancer...doesn't it look pretty? Maybe it's for the best, we're just making sure it will be in full blossom when we finally do get around to treatment so we'll have big targets to aim at. I swear we'll be back in AK by June 1. That's when the trails will be ready to ride, right?

This week, all doctors seem to have stopped communicating with me so I have no idea where I stand. At least I'm getting a lot of work done or something.

...and so it goes.


  1. We will have those trails dry and ready for you. And beer, we will have beer too.

  2. Brentuximab sounds nowhere near as awesome as Proton Beam Radiation. Brentuximab sounds like some drunk douchebag jock's attempt at giving himself a nickname on prom night. Proton beam radiation sounds like something out of Flash Gordon.

  3. Brian-
    Fuck man- I know that we are not exactly friends, and that you certainly have better things to do. I know you through the AK bike thing only. But I wanted to offer at least a little support to you, and recognize the extraordinary circumstances you are in. I remember well our shared experience on the Sheep Mtn 100. I know that platitudes and sunshine up your ass have very little real value in the life and death struggle you are now in. I offer only a diversion to your current circumstances and an outlet for your rage. Know that you matter and that life indeed sucks, and soars in equal measure. Please contact me if you get bored and need some new perspective.- Frank

  4. Thanks, Frank. That race still serves as the benchmark of "how tough is this really". While this year+ long process definitely has it beat, when limited to a defined timeframe, the Sheep Mtn 100 still stands alone. The transplant came close at times but even that wasn't quite there. ...and I stopped at 50. Another 50 would have been a whole other level of suffering I could have built up to.