Friday, October 2, 2009

These Are My Demands

I know that I've already shared how frustrated I can get with the hospital staff, and I'm aware that it reflects my impatience with them just as much as their shortcomings, but in my position I feel every right to demand certain results. When the pediatric E.R. knows I'm coming in an hour before my arrival and I need something very particular, I think preparations should be made to give me what I need in a timely fashion. The last thing I want to do is spend any more time in the hospital than is really necessary. Let's be honest, I only get so much time in between rounds of chemo, and even less of that time is spent feeling good. It should go without saying that if I'm in the hospital, I don't want to be there. Nobody does, I know, but get me in and out as quickly as possible. If I'm only peeing in a cup, you don't need to leave for half an hour. It doesn't take anyone half an hour to pee in a cup. At least I don't think it does. A little more time efficiency, that's what I'm asking for.

I'm only half referring to my Neutropenia incident. Unfortunately, I spent the entire night in the emergency room two nights ago. Clearly, I wasn't thrilled about it, but this time the reason is a little bit more embarrassing than the first time and I'm a little hesitant to talk about it, so bear with me.

For some reason, chemo seems to heat up all my insides. When I burp, it's a full body experience. Everything shakes like my own mini-earthquake, and I blow hot air like some kind of dragon. It's a surprise to me I can't yet spit fire. But in addition to that, I get these stomach aches that feel like the lining of my stomach is burning. I don't have proof, but it's just what I think and it's part of my explanation of what happened the other night. The fact that I receive hours of fluids every night after chemo to protect my bladder is one thing working in my favor.

Anyway, the other night I noticed a wee bit of blood in my urine. Peeing had been slightly painful for a day or two, but like all my other little ailments I attributed it to the chemo. Still, I don't think I could ever really be mentally prepared to see blood coming from there. I apologize for the obvious gender bias to that statement, but it shocked the hell out of me and I was, to speak plainly, freaking out. Still, the last thing I wanted to do was go to the hospital. It was clear to me that the chemo had somehow caused some kind of small cut down there. I called the clinic to be safe, and they told me that as long as I was feeling alright I didn't need to worry, but that the next day when I went to get my blood taken I should have a urinalysis as well to rule out any infection.

Five minutes later, they called back to tell me I had to go to the emergency room.

I'm convinced that everything could have been done so much faster once I got to the E.R. They brought me in immediately, which gave me false hope, because the next thing I knew I was waiting again in some tiny room as if I had come to see some fancy, expensive doctor. It took forever for them to bring me a cup, and then to come back and get it, and then to access my port so they could give me the fluids that took forever to hook up to the wires that hung from my chest all night as I cursed the sky (ceiling, really) from that familiarly uncomfortable, thinly padded wooden table.

After nine and a half hours of Animal Planet, which I must say had some damn good programming, I gave the nurse a urine sample that was blood-free. If you ask me, I was ready to do it hours earlier, but they didn't ask.

Yesterday, the pain was still there and with close examination I confirmed that my suspicion actually was the case. I called the clinic to ask what to do, and the doctor to whom I was speaking obviously had to rule some things out. She asked me if I was sexually active. I told her "I wish." She continued that my culture had come back negative for infection, so the best explanation for the discomfort was, in fact, a small cut, and that I should put some cream on it.

The frustrating thing is that I could have told her the problem to begin with. I didn't have to go to the E.R. and spend all night getting those fluids to flush my system. They had to rule out hemorrhaging, though, which I guess is a good reason to have me come all the way there. It's just that, like I said, I don't get that many good days and the last place I want to spend any part of them is the hospital. Thanks to chemo, though, which is both my savior and my foe, I have to do plenty of things I don't really want to do, like pee blood.

So I wish I could demand more time efficiency in the E.R. Very wishful thinking, I know. Furthermore, when I'm ready to come in for chemo, I think they should be ready to take me. It's why we plan it in advance, isn't it? The nurses have already figured out who on my team is working the days I'm scheduled for chemo, and that's how it's never a surprise to them when I show up. There's usually a friendly face ready to greet me when I get up to the floor, which is something I really don't take for granted. It's always a refreshing moment in a painfully annoying process. It's always after I've spent hours downstairs in the clinic, waiting to make sure my blood levels are acceptable or "getting a head start" on the six hours of pre-chemo hydration because my room is still being cleaned from the last patient. So, again, I never take a friendly face for granted.

That said, I'm not afraid of letting people know how I'm feeling. Sitting here, I realize you're probably aware of that already, but it leads me where I'm going, so I state the obvious. If I need to get something off my chest, off it comes.

The first time I went in for my five-day chemo, I was truly anticipating a single room. It had not even crossed my mind that I might be sharing a room with someone else for five days. Now, it's not that I can't coexist, I've obviously had roommates in the past, but when I'm in for chemo I really like having my own space. More important than having my own space, however, is having my own bathroom. Judging from experience, there is nothing worse than sharing a bathroom in the pediatric oncology ward. For one thing, the other patient's parents will probably have no problem using that bathroom, though they're not supposed to. For another thing, the other patient and parents will probably have no problem peeing all over the seat and the floor without feeling the need to wipe it up. I know I've boasted the convenience of the plastic urinal, but not everything can be done in the plastic urinal, and it's really not fair for me to have to wipe up someone else's pee in order to use the toilet in my own hospital room. Nevertheless, I've done it.

So, you can probably imagine my disappointment on this day when they brought me to a double room. Honestly, I was really pissed off. I was about to be in there for five straight days, and I expressed to the charge nurse my extreme preference for a single room. She, of course, told me that there were none available and likely wouldn't be for at least a few days. Unfortunately for her, she also said something else.

"I know how you feel," she said.

The first time she said it, I didn't really notice. I was visibly upset, and she had immediately gone defense mode on me. I continued to explain to her that since I was admitted for such a lengthy stay, it was really only fair for me to have a single room. And, standing in the double room they had given me, it was easily noticeable that behind the other curtain, my roommate, was none other than a crying baby. As you know, I love crying babies.

"I know how you feel," was the first thing out of this charge nurse's mouth in response to everything I said.

After a while, it really started to bother me. In fact, I thought to myself, "what's the most obnoxious thing you can say to someone with cancer, unless you've ever had cancer yourself?" If you guessed, "I know how you feel," you're exactly right.

Finally, after about the eighth time she said it, I interrupted whatever waste was subsequently falling out of her mouth. "Please don't say that to me again," I said, looking her straight in the eye.

She immediately adopted a more considerate, less dismissive tone, but it really took until that moment for her to stop acting like I was being an imposition on her and to take my request seriously. More importantly, I suppose, is that she didn't say it again.

It took two days for them to find me a single room, but the last two times I've been back for chemo, they've brought me straight to a single room. I don't want to say I hope it was a lesson learned, but I will say that I hope the trend continues. Furthermore, I will make a conscious effort to be more patient with the nurses. Being demanding may get me results, but maybe karma will keep me out of the E.R.