Yesterday, I put blue jeans on for the first time in months. It occurred to me as I was slipping them on, unfamiliarly pulling up the zipper. It's not that I avoid wearing jeans, or any kind of pants with zippers or buttons, for that matter, I just hadn't since my diagnosis. Realistically, I spend all of my time either at home or at the hospital, so there just hasn't been any reason to wear anything other than comfortable shorts or sweat pants. I don't think it's a good idea to try to impress anyone in the children's ward, so I've simply opted for comfort.
Yesterday was also my twenty-third birthday. All week, I was tentatively planning on having a few close friends over. Nothing crazy because I still have to worry about getting sick, and obviously it all depended on how I was feeling. My good sense told me that three days removed from chemo I would still be feeling badly, but it was my birthday, so despite my better judgment I held out hope for something miraculous.
Just as I had expected, getting up yesterday morning was rough. Waking up is usually the most nauseating part of the day, and as usual it took me a while to force myself out of bed. I always have this unfounded hope that if I lay around for a while, letting myself fall into and out of sleep, it will somehow be easier when I finally decide to get up. Of course, it never is.
Sometimes, my body will adjust as the day goes along and the nausea that plagues me in the morning will dissipate over the course of a few hours. I kept telling myself that yesterday would be one of those days, even though I woke up nauseous and the following hours were nauseating as well. But it was my birthday; it just had to be one of those days.
I went along with the plans to celebrate, because, after all, I really deserve it. If anyone deserves a birthday, I know it's me. And since I was too proud to postpone the party to a day that wasn't my birthday, I made a promise to myself that I was going to enjoy it regardless of how sick I felt.
I felt sick all day. It just never went away, and though I masked it with meds, it didn't seem to get much better, either. But my friends came over and I think they had a good time, and I swear I didn't complain once about feeling sick. I didn't force myself to party too hard, and by allowing the joyful surroundings of the day to sink in, they eventually conquered my psyche and in the end it was a good day. It obviously helped to have my closest friends around, but I'm convinced that maintaining an optimistic outlook eventually overcame my inevitable physical struggles.
Though the party lasted all day, I hardly made it until nightfall. With these meds I'm taking, there's just nothing I can do to keep myself from fading, and it always ends in a nap. Yesterday, I think I managed to keep my eyes open until the last of the guests had left. Still, it was an earlier night than I had hoped for, especially on my birthday.
As luck would have it, today has been a much easier day for me than yesterday was. It's usually around this day that I cross the hump and start to feel better, but I was just hoping that the big jump would come a day sooner this time.
Everyone knows that a birthday only lasts one day. Though I may feel better today, there are no guests, no celebration. Like most other things in life, I don't get a re-do. I'll have to wait an entire year to do that again. It's frustrating and it makes me sad. There's just no way around it.
I never get overly excited for birthdays or holidays, it's just not my nature. I don't crave presents or new, shiny things, and like I said it's just one day and it's always over before you know it. I've had homework and midterms on my birthday, and in college it always fell during the week before basketball started so nobody wanted to party too hard and put themselves at a disadvantage for hell week. (Hell week is the first week of practice, which involves two-a-days and some of the hardest conditioning of the entire season.)
So, I always temper my birthday expectations. This year was no different, because in addition to my usual temperance, this year I have cancer. I don't know for how long, but for now and for this year's birthday I do, and it's a pretty good reason to moderate my birthday expectations. Nowadays, I can pretty much always expect to feel crummy, and that's not going to change just because it's my birthday.
But, like any other birthday, it was one day long and it's over now. I'm a year older and the day has passed, so I can move on. Next year is a whole year away, and I know how quickly things can change, so there's no telling the conditions in which I'll find myself by then. If I stay dedicated to my recovery, then maybe next year I'll be able to set my expectations a little bit higher.
Overall, I would call yesterday a good day. I may not have felt well, but for the first time in a while I had a reason to put on jeans and a reason to celebrate. I also learned a lot about the power of positive thinking, and how despite the most unfortunate of circumstances, good people and some chocolate mousse cake can really go a long way towards having a good time.
I will continue to fight, and I truly believe that next year the only reason to throw up on my birthday will be if I drink too much.
Sunday, October 11, 2009
Wednesday, October 7, 2009
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.
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.
Monday, October 5, 2009
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.
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.
Subscribe to:
Posts (Atom)
