We’re sitting in oncology having our orientation. She is due for her first chemo treatment later this week and we are learning what we need to learn.
She’s a rock, of course.
I am trying to keep monkey brain in check.
We first met with her oncologist. The oncologist seems competent and smart and has some years of experience with breast cancer, even though the oncologist’s area of expertise is actually liver and pancreatic cancer. The oncologist talks about treatment cycles and cell division and side effects and what we can expect and what we can’t expect and what to look out for that might indicate trouble.
The oncologist tells us that the clinical trial that we had hoped for is closed and all of a sudden things aren’t going so well inside my head. It isn’t just that the trial is closed. Trials open, trials close, that’s the way things are. What gets me worried is that we were recommended for a trial that was closed. Our surgeon took the case to an actual board who actually agreed that Lump met the criterion for the clinical trial. The oncologist was apparently there. Several people actually sat around a table and discussed Lump’s suitability for treatment under a clinical trial that was closed, recommended it, contacted us about it, and had us come into oncology ostensibly to discuss it.
This frightens me. The good feelings are all gone. Anyone can make a mistake, of course – that’s why it is a good idea to have several sets of eyes on the case. If one slips up, another can catch it. So how did the fact that this clinical trial that we were apparently good candidates for was closed escape an entire medical board? Isn’t that the sort of thing that should be easily determined with a few keystrokes in the hospital computer system? What exactly does it say about organization here that even the oncologist, looking up the clinical trial on the computer, can’t initially be sure whether the trial is open or closed?
Other than that, though, the oncologist seems to have things together, has a treatment plan lined up, has some additional tests planned and the drug regimen figured out and is on top of things (“except the clinical trial”, whispers monkey brain). I am trying very hard to replace my worry and fear with a “you win some and you lose some” attitude. And then we meet with another member of the staff who will be overseeing the case*, and my heart jumps right into my mouth again.
This person seems to be pretty clearly incompetent or frazzled or overworked or something else terribly, terribly wrong. At times X actually seems disoriented, and has a very hard time remembering things. X has to keep leaving and coming back because X has forgotten some critical piece of information and has to return to the office to get it. X talks in extremely banal generalities about everything, and can’t remember the specifics of anything.
X scares the living hell out of me.
It isn’t that X is incompetent, though that is bad enough. It is that X is suddenly the face of all the vast network of people who will be supporting treatment. The person who will do the heart scan, and the people who maintain the machinery. The people who will mix the drugs for chemo. The people who will run the lab tests. The people who will monitor things and the people who clean the rooms and the people who make sure scalpels are sharp and tubes are unblocked and that dietary requirements are clearly understood. An entire phalanx of medical care providers and support staff standing in the shadows working on this cancer case – people I will never meet and thus never be able to evaluate or complain about or feel confident of.
Doctors who can’t, as a group, recognize an open clinical trial from a closed one. Support staff like X who don’t seem to know their jobs at all well. How many more boo-boos and oopsies and I forgots and the like are we facing?
People make mistakes. Even really competent people make mistakes. People will make mistakes with her case as well. That’s why there are other people to check on the people who might make mistakes. But this just seems like so much more – not mistakes but incompetence. And that wipes out all the optimism that I felt.
The cavalry has ridden over the hill. But are they led by John Buford or George Armstrong Custer?
*I do not want to mention this person by job title. I will refer to this person hereafter as X.