Many of you are wondering what's going on with my wait for the clinical trial. Thank you for the prayers and the check-ins and the good vibes and the hanging back and waiting to see what I say about it. All of which are perfect ways to support someone that is going through the unknown every day. After a week long display of left hand not talking to the right hand, the clinical trial nurse coordinator (a wonderful lady named Kathy) located the medical records that were sent from MD Anderson to Moffitt Cancer Center that she needed to be in the computer system before an official invitation could be extended to me.
At first she asked me to go to MDA's medical records department and get duplicates of my file and just fax them on over. That would speed up the process. However, at $1 a page that they charge for me to get my own printouts, I'd be in the poorhouse pretty quick. I explained to her that after 2 1/2 years of non-stop treatment and chemotherapy, my file was not a small one and that there were not enough hours in the day for me to stand at a fax machine and get them to her.
So, Kathy pushed harder on Dr. Minton's office that had the records. Remember, I couldn't meet with Dr. Minton until my records were sent over, so what's the holdup people? Kathy won and the files were released to the scanning department. Hmm? Aren't the files already electronic? In this day and age weren't they emailed over? These are intriguing questions, I know. And ones in which I do not have an answer.
Kathy and Dr. Minton's nurse said that my paperwork had been sent to the scanning department and until they were in the computer, I'm dead to them. Ok, they didn't say it like that, but a girl can read between the lines. I don't exist until I'm in the system. Got it.
Another week went by as some entry level professional or intern scanned each piece of paper in my file into the Moffitt Cancer Center system. I can't imagine that was fun and that worker was probably cursing my name the whole time. With each page the pile just wouldn't get smaller. This project never seemed to go away. Damn you Laura Rhodes or Goldstein-whoever you are. I had to skip lunch again! I missed my kid's soccer practice. Boo to you and your inconvenient Stage IV cancer!
Finally I am in! I'm in the system, just not the clinical trial officially. Yet.
We have forward movement. I will be going to Moffitt on October 6th for a full day of screenings, lab work, scans, whatever other ways they come up with to violate me so that Moffitt can have their own data on my eligibility for this clinical trial.
Stay tuned friends. I'm still on a need to know basis and right now, I just don't know what exactly happens next, when I start the new medicine, how often I'll be travelling to Tampa, etc.
Richard's riding in the Tour de Pink this weekend and Jake and I will be in NYC to cheer for him at the finish line. After our fun weekend, I'll get back to wondering what happens next. Thanks for everything! I am so grateful for you!
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