Here is the happy ending of this story: I was informed this morning by a nurse at the Duke Brain Tumor Center that my recent MRIs show the tumor to be "rock solid stable"--in other words, it hasn't grown a bit. This is exactly what I wanted to hear. Great news, and a huge relief.
Here is the crucial lesson I've learned that has helped me to find my way to this happy ending: I'm not responsible for administering or interpreting my own MRIs. I am, however, responsible for every single other thing in the medical process required to monitor my post-surgery health.
Starting around June 10, I have been in contact with my main go-to nurse at Duke almost every day (not including weekends) either via email or phone (she is, fortunately, a very nice person). I got in touch with her because the calendar on my phone got wiped out, so I needed to know when my follow-up appointment at Duke was. Our initial conversation triggered a series of epiphanies for me. I gradually learned
- That it's my responsibility to keep track of how often my MRIs are supposed to happen.
- When it's time for the next MRI, I need to contact the folks at Duke and have them fax an order to the folks at MUSC (so this means I need to have the fax number at the ready).
- The next day I call the folks at MUSC and set up the appointment.
- Then I go and get the MRI.
- After I have the MRI, I need to go stand in the medical records office for thirty minutes or so to make sure that they send the MRI back to Duke.
- Even after they promise they've sent the MRI back to Duke, there's a pretty good chance they didn't, so I need to call Duke to find out if they received it.
- They probably didn't receive it. For instance, I found out June 23--when I asked--that the Duke folks never received the MRI from April 6. Which means that no one had examined any of my post-surgery MRIs. And no one had apparently noticed this fact.
- So the best idea is to go back to the MRI folks at MUSC and get my own CD of the MRI and then Fed-Ex it to Duke. With a tracking number.
- Then call again to make sure they got it.
- Once they've gotten it, I need to let them know that I'd like to have it read.
- Then contact them again, to see if they've had the opportunity to read it.
- Then contact them once again, just to see if by chance they've gotten around to reading it yet.
- And then the happy email arrives, with news about the reading of the MRI.