Patient advocate, Peloton and Pandemic viewing.

So, we finally bit the bullet and called Duke again today - but with a bit more attitude. You really do need to be an aggressive advocate for yourself. After speaking with the receptionist for the third time we requested to speak to the patient advocate. Our advocate is Dr. Friedman’s nurse, Susan, and she is great. We asked why it’s taking so long and she was very detailed in her response and gave us the useful information that we have been looking for. She basically told us that at Duke they will perform anywhere between 13-15 tests on a single biopsy and that many are sequential in nature so it takes some time. Susan reassured us that this is how Dr. Freidman works and that many times some of his treatment protocols are based on the results of many tests – not just the type and grade tests. By having all information at his disposal, he can make the most sound treatment recommendation. That makes sense to us. Actually, it’s great that we are getting the genetic markers, molecular markers, and other sciency stuff beyond our understanding. If they are going to mess with my brain, I greatly appreciate them wanting as much information as possible. I should say that Brad called while I was getting in a Peloton ride (I have ridden every day that I’ve been allowed post-seizure and brain biopsy). When Susan asked how I was doing and Brad said that I was on the Peloton, she said, “Oh! Really? That’s amazing. Dr.Friedman is going to be glad to hear that!”

Our recommendation though – TELL BIOPOSY PATIENTS IT WILL BE A WEEK MININUM – NOT THAT IT WILL BE ABOUT A WEEK OR SO. I feel like in our jobs, we are always managing up or, at the very least, managing expectations.

Though my post opp nurse said that most neurosurgeons are so smart that to be really good, they have to be almost incapable of normal human communication. Maybe I was expecting too much?

If you are in need of some new pandemic viewing, I highly recommend Indian Matchmaker (Brad not as much...) and we both recommend Down to Earth – the Zac Efron docu-series. If you are even mildly interested in health, climate change or travel – I think you’ll love it. Both are on Netflix.