slow progress

Over two months after surgery, we're still crawling along, trying to get a treatment plan together. It's hard to pinpoint where the breakdown is, but it seems that for three full weeks after our visit to NIH, there was absolutely no communication between NIH's Dr. Camphausen (who was asked to review my treatment by Dr. Fine) and HUP's Dr. Lustig (my radio-oncologist here). Through repeated calls by Michelle and myself, the ball is rolling, but the process is almost opaque to us, so it's hard to say where we are.

The last update, last Monday, was that Dr. Lustig's assistant, Carmella, was getting the relevant treatment info to Colleen Livingstone, the nurse at the Neuro-Oncology Branch (NOB) of the National Cancer Institute (NCI) at the National Institutes of Health (NIH). Whether that information has gotten to Dr. Camphausen and whether he has reviewed it is the question of the week.

I don't want to complain unreasonably, but this is ridiculous. I understand that that, at the NIH, they are serving a huge population and doing tremendous public good and I'm sure they're staff is strectched beyond capacity. But, trying to manage their work in addition to our own lives, one of which, at least, is at stake in the matter, is really too much. A little insight I can't help but having each time I'm asked to hold, again, when trying to follow up on the plan for treatment for my recurrent cancer is that, of the two sides of the phone line, I'm not the one getting paid for my time.