Friends and Family,
WHAT A RUSH!
This morning my buddy Craig called to make sure I got critical news ASAP. He had contacted the clinical trial coordinator in San Diego for AZD9291 (dubbed “The A Team” by Craig), and found out that they will only be accepting new patients UNTIL NEXT FRIDAY. I have exactly one week to get into this trial, or miss the opportunity altogether.
Was it time to press the panic button? This was the only treatment option that we know of that sounded better than either chemo or staying on Tarceva and going downhill slowly (or faster, we don’t know). My time window was incredibly narrow. I also needed to have the right mutation (T790) of my mutation (EGFR), get all my clinical records down to San Diego from two different clinics and two different hospitals, have my oncologist call, get an appointment and be seen, and possibly have a new biopsy, all by next Friday. It felt like drawing a target in the middle of a football field and hoping that lightning would strike on the 50-yard line.
I felt the tension mounting this morning as I was scrambling to get this together. I called AND emailed the clinical trial coordinator (“Master of the Universe,”for my purposes), essentially telling her that I would do back flips, cartwheels, paint myself purple and turn myself into a Wookie if it would get me into The A Team clinical trial by next Friday. Next I called Dr. Cetnar's office to grease the wheels of bureaucracy by using the two-pronged frontal assault, from both doctor and patient. HOWEVER… wait for it… he is… ON VACATION starting today!
About this time my back was so tense that it felt like a coiled steel spring. If someone had snuck up behind me and said “boo,” I probably would have jumped right over my desk. I might have even left a trail behind me.
I finally got an email from the Master of the Universe (MOU), letting me know that ALL my clinical records, biopsies and scan results would be needed to consider me for the trial. And, by the way… wait for it… she is… ON VACATION starting at 5 PM today. No pressure here…
In the end, the pieces tumbled into place. MOU told me that since I already have the T790 mutation, I shouldn’t have to worry about being in the target group. Dr. Cetnar called MOU from home on his vacation. Both OHSU and the Oregon Clinic got past their internal glitches and computer failures and faxed their small mountains of records to MOU, and both film libraries told me that they would have CD’s burned with my scans on them by Monday. AT 5:30 PM today MOU emailed to tell me that my appointment will be on Tuesday.
MOU started her vacation right after hitting the “Send” button.
I’m in!
Absolutely everything had to line up for things to fall together for me. If I had my CT scan a week later, I would have missed this clinical trial. If I didn’t have a job that was flexible enough to accommodate the travel involved, I couldn’t make this work. If we weren’t fortunate enough to be able to afford repeated travel expenses, this wouldn’t be feasible. And of course, if I hadn’t heard about the trial from my buddy Craig, my oncologist wouldn’t have even known that the trial had started.
EVERYTHING above had to fall together in the right way. What are the odds?
Sometimes lightning DOES strike right where you need it.
Thank you to all of you for all of your positive energy, prayers and cheerleading. Some of you took that request literally! It was great! I have also shared your emails with Genevieve, and both of us have coped much better because of you. It was a semi-sleepless night for both us, made much better because of you.
Thank you for being my light, and my lightning.
Love,
Dann
