The Furlough

The roller coaster ride continues. First, the good news: The Sutent continues to work impressively. Dr Rajan said my new CT scans showed even more tumor shrinkage, and he didn’t really think that was even possible. So now, instead of a “conditional partial response” (I think I got that right), I have a confirmed partial response. Not much more I could ask for.

Now, the not-quite-as-good news.

Did you notice the sound of crickets coming from my end of the world? That was the sound of nothing. That’s what I got from my white blood cells again. My Neutrophils (I’m finally spelling it correctly) were too sleepy to show up for my CBC. I even got a second chance to hit my numbers, and they came in even lower. Because of my impending Road to Discovery cross-country bike trip, it made the most sense to take another furlough from the clinical trial. The logistics of blood testing, Fedexing Sutent, etc. were too challenging. Besides, Dr Rajan and the team say that the fantastic response I have to the Sutent and the fact that the tumors were slow-growing even before I got in to the trial make the furlough a reasonable decision. They are comfortable that I’ll be ok, especially since I’ve had a delay once before and things were still good. I’ll still stop at a blood testing lab in York, Nebraska a week before I return to Bethesda to check in on the Neutrophils, but only because I want two shots at staying in the trial.

So I took a train (I love the train!) a day before I was meeting up with the RtD gang so I could visit with a bunch of Orlando tv friends who are now in Philadelphia. It was such a great visit, but too short. Funny how you don’t realize how much you miss people til you see them again.

 

 

 

 

 

 

 

 

 

 

This the fifth year that Notre Dame Dean of Sciences Greg Crawford has ridden across the country raising money to fight rare childhood diseases.

He’s hoping to raise a million dollars by the time we roll in to Pebble Beach. You should believe that he’ll make it happen. It is a tough, tough month, mostly for Greg. Our days start around 4 am, because when we arrive at the next town, there’s media for him to do on top of alumni fundraising gatherings and his regular Dean work. But he is so passionate about helping the kids that he never seems to wear down. He’s pretty remarkable.

What I love about this trip is that I get to see old tv friends that I call to get coverage (Thanks, Jamie and Jackie, Anzio, and Kristine (so far)). Midwest and Western friends, I am coming your way.

The riding has been pretty good so far. I’ve been concerned about my lower-than-usual fitness level and the fact that I can’t seem to maintain that high end intensity or speed. Plus, riding these huge distances for 30 days straight is tough. But so far, so good. We’ve been through Pittsburgh, Harrisburg, Cleveland, and now, Toledo, none of which I have visited before. Of course today, we hit 5 miles of bad road, literally:

Tomorrow, we go to South Bend, and I get to see Notre Dame for the first time, which I am looking forward to (Don’t tell my IU friends). Next update is from York, Nebraska!