Friends and Family,
It's been a wild ride the past five days, and it's far from over! It feels a bit like filling a balloon with air, then letting it go and watching it fly in every direction. My future is that balloon, and I have no idea where it will head from one minute to the next. Right now Genevieve and I have about as much control as you would have over that balloon.
We met with my new doctor to get into the trial yesterday. I thought I was "In", but that wouldn't be dramatic enough, now would it??? There is a catch.
I need to have a new biopsy that tests positive for the T790 mutation. Despite what I was told at OHSU, Dr. Patel told me that there is NO RECORD of a positive T790 test in my charts. They need to base the results on a new sample anyway, so the only thing it would have provided was reassurance. 50% of people that "graduate" from Tarceva have T790, so I have a 50% chance of getting into the study.
GROSSOUT ALERT: Don't read this paragraph if you are squeamish. To get the biopsy they are going to be to put me in a "twilight" state, stick a needle through my back and into my lungs, and then pull out a "core sample." They will stick the needle in while they are doing a real-time CT scan, so the scan can help them find the right spot.
Remember my comment in the last email about needing to have a tumor that was big enough? It turns out that they need one tumor that is at least 1 CM for the biopsy, and a SECOND one at least that big that they can use to measure if the treatment is working. I have one that is plenty big, but the second one is 0.96 CM. If only someone had told me in advance that I needed to grow a pair!
We will fly back down to San Diego for the biopsy next Friday. It will be a game-time decision whether they think they can get the sample from my inadequately-sized tumor. If I pass the test but they have to use the big guy, that will delay getting me in the study for 24 days while the tumor recovers, because they need a healthy tumor that they can measure. BUT...
There's a catch! The study is close to ending, and they don't know when that end will come. If my results aren't back in time, even if I "pass the test," I will be disqualified.
Enough with the catches!
Let's think positive! Root for the "little guy" tumor to get used! Then visualize T790! (Notice how I keep writing T790 so it will be easier to visualize?) Expect that there's plenty of time to get in the study!
I decided a long time ago that whatever came next, I was going to enjoy the ride. It could be easy or it could be an amazing challenge, but there will never be another life that looks like this one. Why not soak it all in and get the most out of it? I can only control some of it, and in the end the outcome is the same for all of us. None of us will live forever. Why not enjoy the ride?
I will confess that this approach only works for about 16 hours a day. Once I try to sleep my defenses are down, and sometimes (like most of the last 5 nights!) my mind races around like that balloon.
So be it. I can only control what I can control.
I hope you are enjoying your own ride. Just like me, this ride is the only one that you will have.
<<<<<< T790 >>>>>>