Hallucinations

My nurse tonight is a nice guy who was sure we had met before, but for the life of me I couldn't remember meeting him. He told me it was a while ago, and that I had pulled the I.V. out of my arm in the middle of the night and walked out into the hallway looking for help. While it sounded like something I would do, I honestly didn't remember doing that. Eventually it dawned on me that it was the night I was awakened by a crisp popping sound, whereafter my vein started gushing blood because the badly-inserted I.V. needle had fallen out of my arm after three days of hanging on for dear life. I can see where he had gotten confused, though.

I'm not speaking for everyone, but in my experience the nurses here have been hit or miss with putting in my I.V. They all comment on how pronounced my veins are, which should make it easy to put the needle in, but while my veins are easy to find they are also "slippery." The first nurse to give it a try just stabbed me with the needle about seven or eight times before I said something like, "Dude, what the-- do you know what you're doing?"

Of course, he said, "Yeah man, I've done this, like, thousands of times. Just let me get it."

After maybe 5 more painful yet unsuccessful needle stabs I was pretty irritated and demanded that he stop. I made it a point to not let him be my nurse again, but other nurses struggled, too. It was the sloppy work of an "I.V. team" member that had resulted in my midnight river of blood. She was a specialist on the special team dedicated to putting in good I.V.'s, yet hers woke me up either from the needle falling out of my arm or by feeling blood streaming down my arm. I called my nurse and she patched me up, but nobody should ever have to wake up like that. If that woman had done her job right, I wouldn't have.

There was another occasion when I was undergoing a procedure as part of this vaccine trial in which I participated. Hopefully the vaccine, when administered at the very end of chemo, will give me a greater chance of fending off the tumor's return once we've got it into remission.

Anyway, this one part of the vaccine required that I have two I.V.'s going at once; one in each arm. The left arm was a normal I.V., but the right arm I.V. was done with a thicker metal needle and wire, which was much less forgiving of mistakes. Obviously, the left arm nurse couldn't successfully start her I.V. for a while. The right arm nurse had more immediate success, so we focused our attention at getting the left arm working correctly. That remained our priority until a mysterious sound from my right arm made me swing my eyes over, only to see that my vein had popped. That really is the diagnosis they gave me: a "popped vein." Not very comforting. They told me it would bruise and probably swell, but would eventually go back to normal.

To make a long story short, a 5-hour procedure turned into a 9-hour procedure, two I.V.'s turned into seven bandaged holes in my arms, and even then we barely got the blood we needed for the vaccine. Either I have weak veins, or the nurses are not as adept at putting in I.V.'s as they should be. Considering the number of quick and easy, successfull I.V.'s I have had over the course of my life, hell, over the past few months, my determination is that they leave something to be desired. I will say that the clinic nurses here have been very good at starting an arm I.V., so I know it's possible.

Just before participating in the vaccine, I had a port put into my chest, which has made it easier because now I don't have to deal with I.V.'s in my arm veins. The port is this small, plastic, circular device that sits in a small pocket in my right pectoral muscle. That's the chest for those who don't know. Anyway, the plastic ring has a jelly center into which the I.V. needle is inserted and through which chemo is given, blood taken, etc. The port also has a hollow plastic tube that extends up from the plastic circle and follows an artery up to my neck. Apparently, they need access to an artery close to the heart to efficiently administer chemo and other drugs.

There are doctors and nurses who come in to ask me questions on a regular basis and I usually have no clue who they are, though they always tell me when we've met and probably assume that I remember them too. I would never stop them to say I don't know who they are, so I just let them continue. Usually, they're just here to ask questions about how the treatment is going or they want to give me a checkup despite the fact that a nurse has usually done it twenty minutes earlier. Generally, I'm anxious to see them go away.

The point I'm trying to get at is that at the very beginning, when I was still on those really intense I.V. pain meds, I wasn't all there mentally and there's a lot I don't remember. My sister started writing down my funniest statements, so I'll have to ask her for the highlights. I distinctly remember announcing, "Two points for the drunk kid," after one of the funny things I said, though I was obviously not drunk. I also remember various phone conversations when I would doze off in the middle of talking, so when whoever I was talking to asked me if I was still there, I would be confused and ask what we were talking about.

"I don't know, you were the one talking," was the most common response.

I don't remember exactly when or what it was, but the doctors were giving me some medication that can make you hallucinate. It was right around the beginning of the first chemo, and I was anxious to get off the I.V. meds, so I was willing to go with whatever they wanted to try. Obviously, when they asked me, I told them I had no signs of hallucination, though I was tripping like a fool. Unfortunately, one thing happened that made my hallucinations difficult to deny.

I was having this dream where I was an actor in one of Adam Sandler's upcoming movies. The scene we were about to shoot required that I be a patient in a bed and that a dentist come to examine me. In my dream, I had walked over to the hospital with a few members of the cast, so naturally I was surprised to wake up all alone in the hospital room. I got out of bed to start searching for the cast and crew, but since I couldn't find them I thought it wise to pee in the garbage can next to the door before anyone else arrived. The bathroom standing ten feet away never even registered as an option in my mind. But as time went on and nobody showed up, I started to get worried and thought it best to go look for people.

The first person I found was the nurse sitting behind the desk in the hall, who looked up at me with immediate concern. "Is everything alright?" she asked.

"Yes, thank you," I responded. "But where is the crew?"

"Excuse me?" she asked. "What crew?"

"You know, for the movie," I said confidently. I was proud of myself and convinced she just hadn't heard of what was going on.

"Do you know where you are?" she asked very nicely, trying not to make the inevitable transition back to reality too harsh for me, I'm sure.

"What do you mean?" I responded.

"Where are you?" she asked, and I took a moment to really think about it.

I was not there to be in an Adam Sandler movie. I was there for cancer treatment because I have cancer and it needs treatment if I'm going to have a chance at getting better. It was hard to swallow.

The nurse accompanied me back into my room and I apologized for urinating in the garbage can. I also apologized for missing the garbage can a little bit. She was more concerned with making sure I was alright, and when I settled back into bed we said goodnight and she left.

I remember sitting up in bed that night, being particularly scared of what my future held. Really, I was scared that I wouldn't have a future. I've always wanted to know what was going to happen someday, and I admit that I didn't spend enough time in the here and now. Now, I don't really have a choice. I don't know what tomorrow brings, just like everyone else, but I have to take this one day at a time because it's the best way of doing it. Tomorrow I might feel crappy, so I get through that day, maybe by looking to the next day. That day I might feel good, so I'll enjoy feeling good that day and try not to think about the day after that when I might feel shitty again.

The point of that last story was to show an example of how there are so many people here who say they know me but I simply don't remember meeting them because of those first few weeks. But I want to remember the people I meet here. While some are difficult to deal with or leave something to be desired in the way they interact with their patients, there are also a lot of great people here. There are brilliant, funny, interesting, caring people working here and I'm not going to miss that by focusing on the idiots. People really can surprise you.

Eventually, I will regain the opportunities I had to enjoy more things. Maybe, eventually, I'll get to be in an Adam Sandler movie and it won't be a hallucination.

Good News

I just got a call from the clinic telling me that my blood levels are high enough for chemo tomorrow. They also told me that my platelets are in the same range as that of a normal person, which means that my body is making bone marrow. My platelets have more than quadrupled since the first chemo. It was my bone marrow that was being attacked by the tumor in the first place, and that's how it was found in the MRI.

It was such a relief to hear that news from the clinic. It seems like all of this suffering is actually paying off. So far, I'm responding to the treatment, and I know better than to take that for granted. I've been told that there are plenty of people with my disease who never respond at all. The tumor just never recedes, no matter how much chemo they receive. I don't know what that would mean, but I hate to believe it means they just don't have a chance.

The fact that this tumor is so unpredictable still scares me. I'm afraid one day the progress I'm making will suddenly stagnate and the tumor will just stay where it is. And even if it goes into remission, one of the problems with this tumor is the frequency with which it returns. I'm not even rid of it and I'm afraid of it coming back. Pretty ironic, huh? I guess that's just something I'm going to have to deal with. Priority number one is still kicking its ass right now, the first time.

I hope that fear only remains with me as a reminder to cherish every day I have as a gift. I know I was never the best at doing that before, but living every day in fear is certainly inspiration to change your way of viewing life. I've said before that fear is only what you allow it to be. If you let it become more than an unnecessary distraction, it can get in the way of life's enjoyment. That's not what I want. Everyone fears the unknown to some extent, but it's just like the "why me?" question; if I sit here wondering whether or not this thing is going to come back, it's only going to bother me and, again, I will never find an answer. I must know better than to do that. I have to do my best to focus my energy on the battle I'm fighting right now. Everything else is simply out of my control, so I'll leave it at that.

Today is a good day. The news from the clinic was fantastic, so I'll celebrate today as a good day. Still, the day before the next round of chemo is always bittersweet. Since it's the day furthest removed from the last chemo, it's the best I get to feel. It's the closest I ever get to feeling like myself. I also know how tomorrow's going to make me feel, and I dread waking up in the morning.

Nevertheless, I know I'll be there and on time for chemo tomorrow. No matter how difficult it is or how terrible I feel, the one thing that never fails is that time will always pass. Though slowly and sometimes painfully, nauseously and sometimes dizzily, time will pass and I will persevere until I reach the next day-before-chemo and I will feel this good again.

I keep telling myself that each round I will get stronger. After this chemo I'll recover faster than last time, throw up less, maybe take less morphine for the pain, pee normally, and set a better example for others than I have in the past. I know it's chemo and it's unpredictable, but it's the day before the cycle starts all over again, so for right now I've just got to believe.

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.