Bedside Manners

Another day with C at City of Hope. This time for some routine things - plan for surgery Friday to install the port where chemo will be administered, then some pre-op tests. Amazing what can become routine. We talked in the car on the way there as C sorts things out. It's a personal thing. After you've been rammed by an oil tanker, it gushes it's crude all over your life... How do you feel about that? Well it's complicated. And he's working on it.

The hospital experience was pretty amazing. The surgeon's assistant that talked with us about the surgery to put in the port was great - calm, direct, kind. We then found out he needed these pre-op tests - an EKG, a chest X-ray and draw some blood. We'd been thinking we'd be out the door after this consult, but then we find out he needs this stuff done. You're like a ping pong ball - just bounced around.

We figured this would now take all afternoon - three different offices, different parts of the hospital. But it was staggeringly fast - we'd walk into an office, hand them the paperwork, sit down, they'd call us in about one minute (even though the waiting rooms seemed full), C would go in and pop back out in another minute, and we were off. He was out so fast I thought he'd just forgotten something in his bag. The whole set of tests took about 20-30 minutes, in three different sections of the hospital. Amazingly efficient.

The only thing was we are waiting for info. Big info. Critical, how-sick-is-he info. C got an X-ray on Monday to check some stuff, basically to see if his situation is "Bad", or "Worse". The doctor said on Monday he'd review the results Tuesday or Wednesday. Of course we were thinking, "Really?! You can't bang this out a little sooner?"

I mean, what's the hurry?

So we've been waiting. Pins and needles since Monday. So we go in the little room to get blood drawn, C looks at the stickers that will go on the vials of blood, and he goes silent. I don't notice what is going on, I'm just looking around, I snap a picture. Then he looks up and shows me the sticker, and it has this code on it that he interprets as meaning he's been categorized as "Worse". He's stricken, shaken, reeling.

He shows me the stickers and I'm thinking he's reading too much into it. This has some other meaning. Which I think is true. I think so. But who knows? We're still in the dark. Waiting. And when you don't have enough info you start filling in the blanks yourself. But we finish the tests, pack up and head out, back out into the sun, thinking how hot it's going to be out here in the Inland Empire this summer. We'll be here a lot this summer.

So we drive back, I drop C at his place downtown, and I pull over and call the doctor. Right now C doesn't want diagnostic details. He wants to start treatment, but he doesn't really care to know his stage, his cure percentage, all that movie-of-the-week stuff. He wants to fight with optimism, and right now feels a bunch of dire sounding stats won't help his mood. I get that.

But I want some info. I leave a message. A couple hours later at home I get a call from the doctor's nurse. I say I want to talk to the doctor about the X-ray, to see what the results are. She says, "Oh, the X-ray was negative." I'm like, "What do you mean? Why didn't anyone call us? We've been on pins and needles over here. We're in crisis. We need that information." She says, "We don't call if the tests are negative."

I'm thinking, "And people let you get away with that?"

We talked for about 15 minutes, me trying to explain what you'd think would be freaking obvious, that people at this stage of treatment are like broken shells, spinning, lost, filled with unanswered questions, grabbing at anything solid, desperate for fixed points on the horizon. And they don't bother to call if the news is good? And by "good" I mean "cancer good".

I'll skip the details, but I did my best to explain human nature to the nurse, but she wasn't particularly interested. I got off the phone and started shaking. One thing that will be made very, very clear to them tomorrow is that we get a call no matter what the results are. Freaking unbelievable.

I also found out that C's case will be reviewed tomorrow by "the tumor board". They, apparently, pore over the data and propose the treatment. The doctor had mentioned that he would be showing the info to this board, but we had no idea this is where the decisions would be made. They didn't mention that. Nice to know.

Truth is, once we get on the chemo train, there's a routine that sets in, and there will be less to surprise us. But right now we're in the discovery phase, and these lapses of communication are rocking our world. This will be dealt with.