Reverence

I've been thinking about the kids, and what happened when we brought them in to the treatment room last Friday.

Bringing them in was a good thing to do. We've been open with them about everything from the start. We think if they don't get the whole story from us, their minds will take off in directions they shouldn't, and they'll imagine the worst. "No news is good news" doesn't apply to kids. They need and get regular news updates.

So having them see the treatment room was good. I asked them at dinner Friday night if the office and the treatment room looked the way they thought they would. Peter hadn't really thought much about it. Both John and Catherine imagined a much more active place, with a doctor standing over me, and lots of machines with dials and buttons and lights. I thought it was kind of funny that both of them thought that same kind of thing.

Really, the the treatment room isn't nearly as cartoonish as they imagined. It's U-shaped, with rows of big comfy recliners (the fake leather kind you see in lots of hospital rooms) along the walls. There are probably 5 or 6 recliners along each wall, with curtains that can be pulled in between them (but rarely are). There are two large flat screen TVs on each side of the U near the ceiling. Each chair has earphones on the wall behind it, though nobody uses them. In the middle of the U is the nurses' station, glassed in, with open doorways, so the nurses can make sure we're OK and get to us quickly if they need to. Under the windows along the middle section of the U is a long, low bookcase full of books, magazines, and blankets. Off to the side is a small "kitchen," with a refrigerator, sink, coffee maker, and usually cookies or donuts or a coffee cake. For the most part, it's bright and cheery -- as cheery as a room full of cancer patients undergoing treatment can get.

Anyway, on Friday, after I had my blood test and I found out I was going to be able to have the 6th treatment, we all went in to the treatment room. I was the first patient in the room that day, so it was pretty quiet, and the nurses were getting ready in the nursing station. I plopped my stuff down on a chair and went to the bathroom. When I got back, the kids wanted to ask me about something unrelated to my treatment, and they were all whispering when they spoke to me and to each other.

"Why are you whispering?" I asked. "This isn't a library." My nurse Sue came over, and she spoke in a normal voice. The kids perked up a bit.

I do know why they were whispering, of course. There's a kind of reverence that comes with the treatment room. When you're on the outside, at least, it seems like a place that's both scary and important at the same time. Bad things happen in there, but they lead to good things in the end. I had the same feeling when I visited Dachau in Germany with friends. I remember how we got quiet as we got closer -- it was almost instinctive.

I felt the same way about the treatment room for a long time. The patient bathroom for the doctor's office is just inside the door to the treatment room. For two years, whenever I needed to use it, I'd feel weird about going into the treatment room. I was never in the middle of all the patients -- I'd just take a step in and the bathroom is right there -- but I always felt like I was disturbing people when I did. I had that notion of treatment being something horrible, like I was intruding on other patients' misery, and that maybe I was disrespecting them.

I had fallen into the trap. I've said from the start of all this that I think making cancer something that gets whispered about and never mentuioned out loud is a mistake. But I know that's an instinct that needs to be fought. I needed to fight it in the same way -- thinking that people getting treatment should be shut behind doors and not "disturbed." It shouldn't be that way.

I'm not saying the treatment room should be open to the world. And I didn't have my kids with me for three hours, nor would I have wanted them to be. (They would have been bored silly.) But having an IV line in your arm is no stigma, either.

It's hard to fight that sometimes.

I'm glad we got the chance to show the kids how to fight it. When they came with my lunch, I was fully reclined, one hand behind my head, one leg draped over the side of chair, relaxed, reading a magazine. I knew they were coming, and I did it on purpose. They needed to see that I was OK. And that's what they saw.