"Who's that?" I asked, mesmerized by the pretty girl who had just walked into the room.
It was my last round of chemo, so I had accepted without much of a fight being put in a 4-bed room, even for five straight days.
"Oh, that's Laci, don't you know her?" responded my fun, friendly, amazingly wonderful caregiver, who certainly knows to whom I am referring.
"No, I don't think so," I said, still gazing at the doorway through which she had come before disappearing to the other side of the room and out of sight, yet through which she would once again have to pass in order to leave.
"She has a boyfriend," warned my informative friend.
"Oh, that's cool," I said, clearly trying to downplay my interest (i.e. play it cool). "I--I-- just thought she had a nice butt, that's all," I continued, immediately regretting my words as soon as I heard them leave my mouth. "Please don't say anything," I told my friend, trying to avoid the impending embarrassment.
I guess I should have known that my friend was about to go tell this Laci what I had said, anyway. I was fully prepared to face the consequences, and I have no problem telling a pretty girl when I think she's pretty. It's just that if I'm going to lead with a compliment, I try to come up with something more flattering than a comment on her butt. I like to at least offer the illusion that there lies some depth within me, beneath the bursting layers of charm and cynicism.
It wasn't until a later date that I learned of my ever-so-flattering comment reaching Laci's ears, and it came as a surprise to me when she told me herself that it had made her smile.
By this fourteenth round of chemo, I had developed somewhat of a nightly routine. First and foremost, being cooped up in a hospital room for five straight days, I liked to lighten the mood with some pain meds. I know, I know, it's a touchy subject for some, but then again so is cancer. I would then unplug my I.V. pole from the wall and drag it alongside me as I would begin to pace the hall indefinitely; my "nightly rounds."
If I were to have visitors, many times they might walk with me. On this night, my friendly caregiver was my walking buddy, and we did laps around the floor until she had to go fulfill her responsibilities to other patients.
Alone now, I noticed Laci sitting at one of the nurse's stations, and asked her if she would like to walk with me. As I expected, she told me she was busy, and I walked on by myself.
Hoping to be entertained, I began to treat the legs of the I.V. pole as a skateboard, pushing off the ground and jumping onto the legs of the pole to ride them down the hall. I kept myself amused for a while, until I pushed too hard and rolled too fast, losing the I.V. pole which almost ripped the line out of my chest as it went crashing to the floor.
"I'm alright," I announced, having maintained my balance and stayed on my feet, though nobody had seen my stunt.
Having flirted with danger long enough, I thought it was time to make my way back towards my room. Ironically, the only person I would find along the way was that same Laci.
"You didn't hear that, did you?" I asked, dreading her answer.
"Yes, I did," she said, clearly trying not to laugh. "It sounded kind of bad. Are you alright?"
"Yeah, I'm fine," I said. "Just trying to keep myself occupied."
"Well, just try not to get hurt. It is your last night tonight, isn't it?"
It wasn't long before I was sitting at the nurse's station with my friend and Laci, my new friend, having been formally introduced for the first time.
I had made it a habit to sit at the nurse's stations late at night, where they took their breaks, as I was comparable in age to many of them despite being treated on a pediatric ward. A night in the hospital can feel like an eternity with nobody to talk to, and I like to think, or at least tell myself, that those I would call my friends enjoyed my company as I did theirs.
"Do you want to hear some of my music?" I asked Laci.
"Sure," she said, "I just have to check up on my patients, first."
I walked back to my room with no expectations that the pretty nurse would ever show up at my hospital bed to hear my band's music about which she knew nothing. But, as luck would have it, she did appear before long, accompanied by another nurse I had not previously met.
I did my best to entertain them, play my music and make them laugh without being overly flirtatious and entirely obvious about my interests.
The night passed as did every other, and I was discharged the next day as I was at the end of every other round. I left as I always left, though this time with a little more fanfare, as I've already shared, and a smile for the girl who had made me smile, though unaccompanied by expectation.
I didn't know what to expect after the first contact, the first response, the first time I heard her voice outside the hospital. I knew that people like to say "good things happen when you least expect them," but I could never have expected anything to be this good.
I don't like to get my hopes up. I don't like to be let down. I don't like to build my expectations for many things other than myself. I like to think it's better that way when something, or someone, unexpectedly exceeds them.
I like when people surprise me. She surprised me. She hasn't stopped.
Friday, August 6, 2010
Monday, August 2, 2010
A Moment of Truth
My back hurts. My stomach hurts. My head hurts. I'm nauseous. I'm tired, and I don't want to feel this way anymore. But the thing about it that makes it all feel even worse is that I'm used to it. I can't remember the last day or time I felt anywhere close to what I would call normal. Sure, I feel more like myself now than I have at any point in the past year. My hair is back, sideburns and eyebrows included. I've shed the weight I put on in the places I didn't want it over those eight plus months of inactivity, and I'm slowly beginning to recognize the old form I so dearly valued in my shallow, unrelenting vanity.
I'm tired of people asking me "how I feel today," or if "today is a good day," though I know most of them ask because they care. I'm even more tired of telling them I'm "pretty good" or that I'm "alright" when the truth is that I feel awful, but I'd rather put on a happy face and tell them everything's okay. I hide my feelings from my family and from my friends, but mostly I just want to hide my pain. I really don't want anyone to try and share it with me. I have enough of it; I don't need to impart it on the people I care about, and that care about me, the way I probably am right now.
For so long, I eagerly awaited my chance to resume normal life; to loosen the reins that had become so suffocating. I ignored the impending responsibility and demands that accompany "real life," and all of a sudden I'm more afraid of going out and living than I am of the persistent uncertainty that I'll be around to do it.
I'm the first to acknowledge the constant uncertainty in our lives. Things are always changing, and I don't know how anyone can promise anything to anyone else when they can't guarantee tomorrow for themselves.
I hit ruts and rough patches; I think everyone does. I think maybe mine last longer than those of others because of cancer. A few months ago, I didn't think it was possible for me to be happy. A lot of the time, I'm not sure it is possible for me to be happy with the way things are right now. It's hard for me to accept that it's okay to feel that way.
People like to say that good things happen when you least expect them. Maybe they just like to maintain hope that something good might happen at any moment. I say it's a cliche. Then I realize that cliches are cliches because they hold true enough of the time for enough people to believe them in order to become cliches.
I will not believe that things happen for a reason. I will not budge on that point. But I will bend on the idea that good things happen when you least expect them. Maybe, for instance, on the last night of the last round of high dose chemo, when, on any normal occasion, I would not remember. And maybe by "good" I really mean "great," or "amazing." Maybe it's hard to let myself believe something like that could really be as great as it is, because this time it could actually be real. This time, it's not some impossible dream that I'll never touch. Now I dream while I'm awake.
I guess it's still hard for me to believe that someone could make me happy when I didn't think it was possible to be happy. I didn't know someone could know what I'm going through, see the question marks, and still want to love me. And though she can't heal my pain, or keep my stomach from gurgling like a water cooler, or keep me from falling into the occasional funk, she can remind me that everything will be alright just by existing in my life. I guess that's what people mean when they talk about the "healing power of love." That's if you believe cliches, of course.
When I hurt, she makes me hurt less. When I laugh, she makes me laugh harder. When I sleep, she helps me sleep better. When I can't get out of bed, she doesn't either. And by "can't" I really mean "don't want to," but I still mean she doesn't, either.
Before I got sick, I believed in the value of the journey as well as the destination. Since I was diagnosed, I've wished countless times that I could fall asleep and wake up when it's all over. I didn't care how I got there, I just wanted to be better. And, to a large extent, I still feel that way. But at least now I feel like part of the journey is worth being awake for.
I still have a long way to go. I have another round of low dose chemo before my next scan, and I'm not under the delusion that this will be the end. I don't like to get my hopes up. I know I'll reach the end of treatment, and I know that each passing day brings me closer to it. But I no longer feel like I'm in such a rush, and I once again feel like I can have everything there is to have in this life. I thought I had lost that. I've been reminded. I don't know what to call it... peace of mind, I guess.
I'm tired of people asking me "how I feel today," or if "today is a good day," though I know most of them ask because they care. I'm even more tired of telling them I'm "pretty good" or that I'm "alright" when the truth is that I feel awful, but I'd rather put on a happy face and tell them everything's okay. I hide my feelings from my family and from my friends, but mostly I just want to hide my pain. I really don't want anyone to try and share it with me. I have enough of it; I don't need to impart it on the people I care about, and that care about me, the way I probably am right now.
For so long, I eagerly awaited my chance to resume normal life; to loosen the reins that had become so suffocating. I ignored the impending responsibility and demands that accompany "real life," and all of a sudden I'm more afraid of going out and living than I am of the persistent uncertainty that I'll be around to do it.
I'm the first to acknowledge the constant uncertainty in our lives. Things are always changing, and I don't know how anyone can promise anything to anyone else when they can't guarantee tomorrow for themselves.
I hit ruts and rough patches; I think everyone does. I think maybe mine last longer than those of others because of cancer. A few months ago, I didn't think it was possible for me to be happy. A lot of the time, I'm not sure it is possible for me to be happy with the way things are right now. It's hard for me to accept that it's okay to feel that way.
People like to say that good things happen when you least expect them. Maybe they just like to maintain hope that something good might happen at any moment. I say it's a cliche. Then I realize that cliches are cliches because they hold true enough of the time for enough people to believe them in order to become cliches.
I will not believe that things happen for a reason. I will not budge on that point. But I will bend on the idea that good things happen when you least expect them. Maybe, for instance, on the last night of the last round of high dose chemo, when, on any normal occasion, I would not remember. And maybe by "good" I really mean "great," or "amazing." Maybe it's hard to let myself believe something like that could really be as great as it is, because this time it could actually be real. This time, it's not some impossible dream that I'll never touch. Now I dream while I'm awake.
I guess it's still hard for me to believe that someone could make me happy when I didn't think it was possible to be happy. I didn't know someone could know what I'm going through, see the question marks, and still want to love me. And though she can't heal my pain, or keep my stomach from gurgling like a water cooler, or keep me from falling into the occasional funk, she can remind me that everything will be alright just by existing in my life. I guess that's what people mean when they talk about the "healing power of love." That's if you believe cliches, of course.
When I hurt, she makes me hurt less. When I laugh, she makes me laugh harder. When I sleep, she helps me sleep better. When I can't get out of bed, she doesn't either. And by "can't" I really mean "don't want to," but I still mean she doesn't, either.
Before I got sick, I believed in the value of the journey as well as the destination. Since I was diagnosed, I've wished countless times that I could fall asleep and wake up when it's all over. I didn't care how I got there, I just wanted to be better. And, to a large extent, I still feel that way. But at least now I feel like part of the journey is worth being awake for.
I still have a long way to go. I have another round of low dose chemo before my next scan, and I'm not under the delusion that this will be the end. I don't like to get my hopes up. I know I'll reach the end of treatment, and I know that each passing day brings me closer to it. But I no longer feel like I'm in such a rush, and I once again feel like I can have everything there is to have in this life. I thought I had lost that. I've been reminded. I don't know what to call it... peace of mind, I guess.
Wednesday, July 21, 2010
The Last Few Months
Very early on in this process, I was at the National Cancer Institute in Bethesda, MD, undergoing what seemed like an interminable number of procedures to qualify me for their vaccine trial, which has, in the months since, seen good results in a number of delicate cases. Anyway, while I was there, one of the doctors, in talking to me and my family about my road to recovery, should it even exist, said, "it's not a sprint, it's a marathon."
Over the past few months, those words have come and gone countless times through my mind. The thought usually evokes one of two responses, as I will explain. In either case, I expect to somehow reach the end of my life, preferably an end of old age. So, on the one hand, when I reach the end of my life as an old man, I think of this experience as having been a marathon rather than a sprint. And I can't help but feel uneasy about the prospect of someday reaching the waning years of my life and thinking to myself, "I knew it was going to be a marathon, but I made it!"
I know I've said it before, but running still feels to me like a form of punishment, instilled by years of angry coaches telling me to "get on the line!" followed by the number of seconds that would appear and then vanish from the game clock on the wall, before which the team had to finish the ensuing sprint or else have to run again.
So I think to myself how I don't want simply getting through life to feel like running a marathon, so I can reach the finish line and think, "Oh man, that was rough, thank goodness it's finally over." I mean, that's the biggest reason why I could never see myself running a marathon in the first place. Do I really want to look at my life that way? Get to the end and think, "at least I made it"?
I keep telling myself that this experience will not last forever and will not always define my life and who I am as a person, though it has changed the person I am and will no doubt influence the person I am to become. So the other response I have to the notion of the marathon is that a marathon can be measured. 26.2 miles, in fact, is all that constitutes the length of a marathon. And by no means am I trying to diminish the accomplishment or feat that is running a marathon. It is obviously one of the greatest challenges to overcome and one of the most demanding to achieve of things we know. Its tradition is meant to honor the first man to ever run such a distance, at the end of which he dropped dead. So I can imagine the immense satisfaction one might feel at the completion of a marathon, but as I said, I have little to no intention of ever running one. I just don't see realistically how I would enjoy the experience.
I last wrote while in the midst of seven weeks of radiation on my shoulders. While radiation did not make me sick in the same way as did the chemo before it, I still found it rather unpleasant to wake up in the morning to see blood on my sheets coming from the severe burns on my arms that had turned my skin into crocodile leather.
Shortly after radiation ended, I began a regimen of low-dose chemotherapy with the intent to keep going after the disease while affording me more time and freedom to live my life than I had during the first 14 rounds of hell. And while nothing will likely compare to those first 14 rounds, the new low dose regimen started out with a blast.
Round 1 (or round 15, whichever way you prefer to look at it), was the maximum dose allowable, some of it in pills and some more I.V. drugs. Thus began three straight weeks of nausea, vomiting, diarrhea, stomach pains, headaches and the like, different from but comparable in many ways to the heavy chemo from which I had just graduated. I'm actually pretty sure I threw up more times from that first round of low dose chemo than I did through fourteen rounds of the rough stuff.
Fortunately, each round since the first round of low dose has been progressively easier, and I can say that now, currently being halfway through round 5 (or 19, if you will), as I keep my mind occupied so as not to dwell on the partially alleviated nausea, stomach pain, and diarrhea.
People ask me all the time how much longer I will have to do this, and by "this" I assume they mean the low dose chemo because most people don't know that the low dose is only to get me to where my level of recurring disease is low enough for me to qualify to receive the vaccine down at NCI; the vaccine that was made for me a year ago when the nightmare from which I am still not yet fully awake began. So I tell these people what I tell you now, that the most frustrating thing about it is that I don't really know how much longer I will have to do this.
And that's where the marathon idea comes back into play. A marathon has a starting line and a finish line. The idea of its length and difficulty applies here, I get that, but it frustrates me to think that I could be doing this low dose chemo every third week for years, and we would still be taking a "one round at a time" approach. The goal of all this treatment is for me to reach remission, and I'm glad that the goal is still the same. But when people ask, they seem to expect some kind of magical end date. And when I don't have one to give them, it frustrates me all over again.
Even marathons have a finish line.
After the third round of low dose chemo, I had another PET Scan that showed things moving in the right direction. Tumor levels are diminishing, and we could not have hoped for better results. But when the doctor told me to be happy and to celebrate, it was hard for me to take the good news as just that. Sure, it was good news and meant good things for the future, but my next thought after relief is the indefinite number of rounds I have yet to endure before I can even reach the next leg of this journey. Nobody knows when this portion will end, and after that I will still have the vaccines and regular tests and checkups to see if and how well the vaccines actually worked, and I'll still have to wonder if and when the disease will come back, not to mention that in order to even be asking these questions, so many things need to keep going right.
My family and friends often remind me of how strong and positive I've been through all of this. Sure, there are times when I look in the mirror, usually after I throw up or feel the worst I think I can possibly feel, and I think of myself as invincible; like nothing in this world can break me. But there are plenty more times when I feel helpless and my positive attitude and approach to these things leaves me just as quickly as did the meager breakfast I was hoping to keep down that day.
I know I can't be happy all the time. I know nobody can, even the large majority of people who don't have to deal with the things I endure on a daily basis. I want to think of myself as a happy person, nonetheless, and I want to bring joy to others.
I guess over the past few months I've realized that being a role model to others doesn't mean painting the prettiest picture possible from every situation that arises. Sometimes, things just need to be the way they are. Shitty things are shitty. There's no way around that. Shitty days will be shitty days. But if we can continue to see the big picture of things, keep our sights on the results we wish to achieve and the destination we wish to reach, then rough days and rough times may just pose the inevitable bump in the road that keeps us grounded. These days and difficulties may force us to strengthen ourselves as individuals to be better suited to attain that big picture and to one day reach our goals and dreams.
Taking this experience one day at a time never gets any easier. Wanting the freedom I once had and waiting for treatment to allow me to regain it never gets any easier. But the fight gets easier as I get stronger, and the future, though still scary, gets brighter as I continue to grow as a person, a friend, and a survivor.
Over the past few months, those words have come and gone countless times through my mind. The thought usually evokes one of two responses, as I will explain. In either case, I expect to somehow reach the end of my life, preferably an end of old age. So, on the one hand, when I reach the end of my life as an old man, I think of this experience as having been a marathon rather than a sprint. And I can't help but feel uneasy about the prospect of someday reaching the waning years of my life and thinking to myself, "I knew it was going to be a marathon, but I made it!"
I know I've said it before, but running still feels to me like a form of punishment, instilled by years of angry coaches telling me to "get on the line!" followed by the number of seconds that would appear and then vanish from the game clock on the wall, before which the team had to finish the ensuing sprint or else have to run again.
So I think to myself how I don't want simply getting through life to feel like running a marathon, so I can reach the finish line and think, "Oh man, that was rough, thank goodness it's finally over." I mean, that's the biggest reason why I could never see myself running a marathon in the first place. Do I really want to look at my life that way? Get to the end and think, "at least I made it"?
I keep telling myself that this experience will not last forever and will not always define my life and who I am as a person, though it has changed the person I am and will no doubt influence the person I am to become. So the other response I have to the notion of the marathon is that a marathon can be measured. 26.2 miles, in fact, is all that constitutes the length of a marathon. And by no means am I trying to diminish the accomplishment or feat that is running a marathon. It is obviously one of the greatest challenges to overcome and one of the most demanding to achieve of things we know. Its tradition is meant to honor the first man to ever run such a distance, at the end of which he dropped dead. So I can imagine the immense satisfaction one might feel at the completion of a marathon, but as I said, I have little to no intention of ever running one. I just don't see realistically how I would enjoy the experience.
I last wrote while in the midst of seven weeks of radiation on my shoulders. While radiation did not make me sick in the same way as did the chemo before it, I still found it rather unpleasant to wake up in the morning to see blood on my sheets coming from the severe burns on my arms that had turned my skin into crocodile leather.
Shortly after radiation ended, I began a regimen of low-dose chemotherapy with the intent to keep going after the disease while affording me more time and freedom to live my life than I had during the first 14 rounds of hell. And while nothing will likely compare to those first 14 rounds, the new low dose regimen started out with a blast.
Round 1 (or round 15, whichever way you prefer to look at it), was the maximum dose allowable, some of it in pills and some more I.V. drugs. Thus began three straight weeks of nausea, vomiting, diarrhea, stomach pains, headaches and the like, different from but comparable in many ways to the heavy chemo from which I had just graduated. I'm actually pretty sure I threw up more times from that first round of low dose chemo than I did through fourteen rounds of the rough stuff.
Fortunately, each round since the first round of low dose has been progressively easier, and I can say that now, currently being halfway through round 5 (or 19, if you will), as I keep my mind occupied so as not to dwell on the partially alleviated nausea, stomach pain, and diarrhea.
People ask me all the time how much longer I will have to do this, and by "this" I assume they mean the low dose chemo because most people don't know that the low dose is only to get me to where my level of recurring disease is low enough for me to qualify to receive the vaccine down at NCI; the vaccine that was made for me a year ago when the nightmare from which I am still not yet fully awake began. So I tell these people what I tell you now, that the most frustrating thing about it is that I don't really know how much longer I will have to do this.
And that's where the marathon idea comes back into play. A marathon has a starting line and a finish line. The idea of its length and difficulty applies here, I get that, but it frustrates me to think that I could be doing this low dose chemo every third week for years, and we would still be taking a "one round at a time" approach. The goal of all this treatment is for me to reach remission, and I'm glad that the goal is still the same. But when people ask, they seem to expect some kind of magical end date. And when I don't have one to give them, it frustrates me all over again.
Even marathons have a finish line.
After the third round of low dose chemo, I had another PET Scan that showed things moving in the right direction. Tumor levels are diminishing, and we could not have hoped for better results. But when the doctor told me to be happy and to celebrate, it was hard for me to take the good news as just that. Sure, it was good news and meant good things for the future, but my next thought after relief is the indefinite number of rounds I have yet to endure before I can even reach the next leg of this journey. Nobody knows when this portion will end, and after that I will still have the vaccines and regular tests and checkups to see if and how well the vaccines actually worked, and I'll still have to wonder if and when the disease will come back, not to mention that in order to even be asking these questions, so many things need to keep going right.
My family and friends often remind me of how strong and positive I've been through all of this. Sure, there are times when I look in the mirror, usually after I throw up or feel the worst I think I can possibly feel, and I think of myself as invincible; like nothing in this world can break me. But there are plenty more times when I feel helpless and my positive attitude and approach to these things leaves me just as quickly as did the meager breakfast I was hoping to keep down that day.
I know I can't be happy all the time. I know nobody can, even the large majority of people who don't have to deal with the things I endure on a daily basis. I want to think of myself as a happy person, nonetheless, and I want to bring joy to others.
I guess over the past few months I've realized that being a role model to others doesn't mean painting the prettiest picture possible from every situation that arises. Sometimes, things just need to be the way they are. Shitty things are shitty. There's no way around that. Shitty days will be shitty days. But if we can continue to see the big picture of things, keep our sights on the results we wish to achieve and the destination we wish to reach, then rough days and rough times may just pose the inevitable bump in the road that keeps us grounded. These days and difficulties may force us to strengthen ourselves as individuals to be better suited to attain that big picture and to one day reach our goals and dreams.
Taking this experience one day at a time never gets any easier. Wanting the freedom I once had and waiting for treatment to allow me to regain it never gets any easier. But the fight gets easier as I get stronger, and the future, though still scary, gets brighter as I continue to grow as a person, a friend, and a survivor.
Subscribe to:
Posts (Atom)
