It's impossible not to ask this question. Why me? How could this happen to me? I've always felt compassion for those in my situation, and I wondered why they were the victims of such misfortune. I would tell myself to be grateful; that it could be me in their shoes just as easily as someone else. Still, I never dreamed it would actually happen.
Did I do something wrong to deserve this? I must have, right? How else can you explain it? I've always taken good care of myself. I eat healthy, hell, I was a college basketball player just over a year ago, for crying out loud. I was a good friend, a good brother and son, I worked hard. Then, all of a sudden I wake up in the middle of the night with a tumor that has about 40 cases a year and about a 20% survival rate. Where's the logic? What's the explanation? It doesn't seem fair.
I stopped asking these questions a long time ago because the reality is that it's not fair. It just isn't fair, and it doesn't matter how many times I ask the questions, there still won't be answers. In actuality, I knew that from the very beginning. I never really wondered about those things, though they crossed my mind, I mean, how couldn't they? But I knew that the answers didn't exist, just the same way that they didn't exist for all those other people I used to think about before me.
My parents, on the other hand, asked those questions over and over again. It kept them up at night, searching for some kind of explanation, why? I could have told them they were wasting their time and that it would only make things harder.
My mom invited the rabbi over to our house one night. I guess she hoped he might have answers. He offered support, naturally, but he didn't really have answers because once again, they don't exist. For me, the whole situation just tests my faith in you know who. The truth is, I've never been convinced in a higher power for this same reason. Bad things happen to good people inexplicably and there's just nothing anyone can do about it. Good people will continue to die too young, and bad people somehow live until they're old. In fact, my one question for the rabbi was if maybe God was mad at me because I didn't believe strongly enough. But, as all believers know, God forgives all sins and wouldn't punish me for that.
I've always prayed. I think that prayer can be a constructive and spiritual experience regardless of one's beliefs. I don't know who else I would be praying to, so I guess on some level I do believe. I will continue to pray now, considering I'll take all the help I can get.
Sometimes, my mom wakes up screaming in the middle of the night. Every time it happens, I think someone is in there trying to kill my parents or something and I wake up with my heart beating like crazy. Come to think of it, I have nightmares almost every time I fall asleep. Even if I'm just taking a nap, I'm narrowly escaping death or watching someone close to me perish. Seriously, I think I've watched everyone close to me in my life die in my dreams over the past month.
It doesn't take Freud to tell me that I'm scared. Of course I'm scared. I think about the worst that can happen, and it's damn hard to hold back tears.
If you want my opinion, the sooner you accept that all of those "why me" sort of questions have no answers, the better off you will be. You may never stop being scared, but understand that fear is only what we allow it to be. If we allow our fear to build inside our minds, it may consume us and prevent us from enjoying our lives as we were meant to enjoy them. As unclear as my future may be, I will face it with strength and dignity, and I will overcome any obstacle I have the ability to overcome. Fear can only hold me back.
I came across something I wrote a long time ago. Truthfully, I didn't even remember writing it but I think it's kind of appropriate so I'm going to leave you with it.
"It's hard to find progress in stability when we demand immediate results in our high-risk, fast-paced lifestyles; when stagnancy wears on us the way water seeps through a paper towel. But when little has been left untouched, unscathed by the burning search for answers that have not yet been found, we abandon sources of certain misfortune in favor of unproven ideals. We turn to one another, for hope and faith in a common dream of a better tomorrow must overcome even the darkest and most solitary despair."
Monday, September 21, 2009
Friday, September 18, 2009
I've Lost My Self-Control
One of the most frustrating things about this whole thing, at least to me, is the fact that I've lost control of so many aspects of my life. I can't eat what I want because it's been in the refrigerator too long. I can't go out because I might get sick. I go in for chemo when they tell me my blood levels are okay, and I go home when they tell me I can go home. I eat what they bring me in a plastic container, I pee in another plastic container, and the mechanical bed on which I get to sleep decides all by itself when and how to change shape. Nurses find excuses to wake me up every twenty minutes (or so it seems) when all I want to do is be left alone to sleep through the night. Even at home, I have to wake up every morning at 6am to take meds for the pain and nausea, even though I know that I'm going to be nauseous whenever I wake up. My body will tell me I need to throw up out of nowhere. I need to take stool softeners multiple times a day because I can't do that the way I used to either. I'm not even going to get into what morphine does to my sex drive. I just hope that my body can remember what all that is like when this is all over. My hair has fallen out, I can't shake hands or give hugs when anyone comes to see me, the dog can't sleep on my bed, and I have to use my very own special video game controller that's just for me and nobody else can touch it.
I could go on, but I think you get the point. That said, I like to find the humor in things when I can. I've always felt that it's foolish to take things too seriously. Life is too fleeting to be taken seriously.
My chemotherapy consists of Part A and Part B. Part A is given over two days, and seems to be a little more intense than Part B, which happens over five days. So far, I've been through two A's and a B. I obviously prefer B to A, because even though I have to be in the hospital for longer, the aftereffect is less severe. Oh, and in the hospital, I can't really unhook the tubes to take a shower either, though I would much prefer to maintain my personal hygiene.
Anyway, I was in the hospital for my very first Part B. That's the five day variety. On one of the middle nights, as the nurse was checking my vital signs for the umpteenth time, she mentioned to me that the chemo I had just received required that I be given a lot of fluids over the course of the night as a precautionary measure. I thought nothing of it, as it was late and I was glad to be done with the day's chemo and wanted to go to sleep. She left, and I dozed off.
Possibly the lone bright spot of being in the hospital for chemo is that they give me plastic containers, called "urinals," in which I am expected to urinate. Every time I have to pee, I have to do it in a plastic bottle. I don't know why, since the nurses just empty them into the toilet most of the time, but I do. At night, however, it really is fantastic to be able to turn over to the side and pee into a bottle without getting out of bed and dragging the I.V. with me to the bathroom. It really is that simple. I open the container, turn to the side, do my business, and hook it over the side of the bed for the nurse to take care of it. Since it is so simple, I was shocked on this particular night to wake up in the wee hours soaking wet. I had peed through my boxers and my shorts, and had managed to totally drench the blanket and sheets that were underneath me. Now, I'm not saying that I pee in the bed regularly, but on the rare occasion that it does happen, there will at least be some inclination that something is going wrong. But on this night, so much fluid was pumping through me from the I.V., I didn't even have a clue. I didn't even have a prayer of avoiding this one. I mean, I've lost control of a lot of things, but my bladder is definitely not one of them!
I slept the rest of the night on the outermost sliver of the bed with my legs straight and my arms at my sides. That really was the only place I could sleep without getting wet. The rest of the bed was soaked. Of course, I changed into different boxers and shorts. You can probably imagine how badly I wanted to unhook those tubes and shower, not to mention how badly I was dreading the next two days without one. It wasn't until the next afternoon, when the sheets had dried, that I had the courage to ask for a fresh set. I kept to the same outermost sliver of the bed until then.
Having told you about the convenience of the plastic urinal, I should tell you what happened on another wonderful night in the hospital. This was before my chemo had begun, when the doctors were still running all kinds of tests to figure out my diagnosis. At this point, I had to sleep with a little metal thing wrapped around my pinky finger to make sure my pulse didn't accelerate abnormally during the night. The little metal thing had a cord that connected to a machine that sat on the table next to the bed. Unfortunately, on this occasion, the gizmo was malfunctioning to the point that every time I took the metal thing off of my finger to get out of bed, it started freaking out and the alarm would sound and the nurses would be called. And, at this time, I was still a novice and had not yet mastered the turn-and-pee technique. I was still getting out of bed and standing up every time I had to use the urinal. Of course, the cord to the little metal thing didn't reach that far.
When I removed my finger from the thing, the nurse asked me through the intercom if everything was alright. I promptly answered her that everything was fine, I was just going to use the bathroom. Urinal in my hand, I got out of bed and stood up to do my thing. Before I could even manage to get started, though, I saw a shadow looming outside the door. Clearly, the nurse had not heard me, so I yelled, "I'm fine! Don't come in here!" Nevertheless, the doorknob began turning, so I yelled frantically, "Please wait! Please wait! Please wait!" and as if to partially acknowledge my pleas, the door only opened a sliver at first, and there it stopped. I really thought someone had listened to me until the door flew open and a team of three nurses strolled into the room to find me with my pants down, urinal in one hand and well, you know what was in the other.
At least as time has gone on, my parents have treated me more like my normal self. It's hard to explain to people that I haven't changed. I'm still me despite what my body is going through. I think that as time goes on, I'll also regain control of things, little by little. I know that some things will have to be dictated to me until I'm through this, but I still miss being in control.
I could go on, but I think you get the point. That said, I like to find the humor in things when I can. I've always felt that it's foolish to take things too seriously. Life is too fleeting to be taken seriously.
My chemotherapy consists of Part A and Part B. Part A is given over two days, and seems to be a little more intense than Part B, which happens over five days. So far, I've been through two A's and a B. I obviously prefer B to A, because even though I have to be in the hospital for longer, the aftereffect is less severe. Oh, and in the hospital, I can't really unhook the tubes to take a shower either, though I would much prefer to maintain my personal hygiene.
Anyway, I was in the hospital for my very first Part B. That's the five day variety. On one of the middle nights, as the nurse was checking my vital signs for the umpteenth time, she mentioned to me that the chemo I had just received required that I be given a lot of fluids over the course of the night as a precautionary measure. I thought nothing of it, as it was late and I was glad to be done with the day's chemo and wanted to go to sleep. She left, and I dozed off.
Possibly the lone bright spot of being in the hospital for chemo is that they give me plastic containers, called "urinals," in which I am expected to urinate. Every time I have to pee, I have to do it in a plastic bottle. I don't know why, since the nurses just empty them into the toilet most of the time, but I do. At night, however, it really is fantastic to be able to turn over to the side and pee into a bottle without getting out of bed and dragging the I.V. with me to the bathroom. It really is that simple. I open the container, turn to the side, do my business, and hook it over the side of the bed for the nurse to take care of it. Since it is so simple, I was shocked on this particular night to wake up in the wee hours soaking wet. I had peed through my boxers and my shorts, and had managed to totally drench the blanket and sheets that were underneath me. Now, I'm not saying that I pee in the bed regularly, but on the rare occasion that it does happen, there will at least be some inclination that something is going wrong. But on this night, so much fluid was pumping through me from the I.V., I didn't even have a clue. I didn't even have a prayer of avoiding this one. I mean, I've lost control of a lot of things, but my bladder is definitely not one of them!
I slept the rest of the night on the outermost sliver of the bed with my legs straight and my arms at my sides. That really was the only place I could sleep without getting wet. The rest of the bed was soaked. Of course, I changed into different boxers and shorts. You can probably imagine how badly I wanted to unhook those tubes and shower, not to mention how badly I was dreading the next two days without one. It wasn't until the next afternoon, when the sheets had dried, that I had the courage to ask for a fresh set. I kept to the same outermost sliver of the bed until then.
Having told you about the convenience of the plastic urinal, I should tell you what happened on another wonderful night in the hospital. This was before my chemo had begun, when the doctors were still running all kinds of tests to figure out my diagnosis. At this point, I had to sleep with a little metal thing wrapped around my pinky finger to make sure my pulse didn't accelerate abnormally during the night. The little metal thing had a cord that connected to a machine that sat on the table next to the bed. Unfortunately, on this occasion, the gizmo was malfunctioning to the point that every time I took the metal thing off of my finger to get out of bed, it started freaking out and the alarm would sound and the nurses would be called. And, at this time, I was still a novice and had not yet mastered the turn-and-pee technique. I was still getting out of bed and standing up every time I had to use the urinal. Of course, the cord to the little metal thing didn't reach that far.
When I removed my finger from the thing, the nurse asked me through the intercom if everything was alright. I promptly answered her that everything was fine, I was just going to use the bathroom. Urinal in my hand, I got out of bed and stood up to do my thing. Before I could even manage to get started, though, I saw a shadow looming outside the door. Clearly, the nurse had not heard me, so I yelled, "I'm fine! Don't come in here!" Nevertheless, the doorknob began turning, so I yelled frantically, "Please wait! Please wait! Please wait!" and as if to partially acknowledge my pleas, the door only opened a sliver at first, and there it stopped. I really thought someone had listened to me until the door flew open and a team of three nurses strolled into the room to find me with my pants down, urinal in one hand and well, you know what was in the other.
At least as time has gone on, my parents have treated me more like my normal self. It's hard to explain to people that I haven't changed. I'm still me despite what my body is going through. I think that as time goes on, I'll also regain control of things, little by little. I know that some things will have to be dictated to me until I'm through this, but I still miss being in control.
Thursday, September 17, 2009
Welcome to CHEMO≠THERAPY
My name is Jonathan and I've been given a unique opportunity to have tons of free time. As evidenced by the title of this blog, I have cancer. I was diagnosed about a month and a half ago, and since then I've been pretty uninspired to do much of anything. I have the full realm of the house I grew up in with which to entertain myself, and when I feel good enough I can leave the house as long as I don't go anywhere with a lot of people in an enclosed space.
Before this, I would have called my recent behavior lazy, and I would never have allowed it to happen. But obviously, that word changes everything. Cancer. It's scary to even see it on the page in front of you. What's worse is that it can mean so many different things. There are an inordinate amount of disorders and illnesses under the umbrella of that word, many of which are put there simply because doctors and researchers have been unable to learn enough about them to call them anything else. And, I've realized, most people are made noticeably uncomfortable at its very mention.
Yesterday, for probably the first time since this whole nightmare began, I was feeling motivated. Considering the limited number of options at my disposal, I wanted to find something constructive to do with my time. After all, I plan to rejoin the ranks of normal daily life once I'm over this, so I think I should make the best of all this free time I have right now. Being alone at the time, I realized how often I am by myself, and it hit me, how easy it is to feel alone when you're sick like this. The support I've received from my friends and family has been great, but it's just inevitable that sometimes I feel like I'm all alone. I thought of all the other people going through the same thing as me, and how they probably feel the same things as I do. I thought of all the people who will someday be going through the same thing as me, but have no idea. I want this blog to be for all of them, and for anyone else who's interested. I want them to know that they are never alone, just as I know I'm not alone in this sickness.
One thing I'm sure a lot, if not all of us fighting cancer have in common is chemotherapy. Chemotherapy, according to dictionary.com, is the treatment of cancer using specific chemical agents or drugs that are selectively destructive to malignant cells and tissues. Of course, everyone knows that the definition doesn't tell the whole story. Different kinds of cancer call for different prescriptions of chemo drugs, but I'm pretty sure it's universal that chemo kills everything, not just the bad stuff. Chemo kills the cells lining the esophagus down to the cells that make up our blood. It makes you nauseous, dizzy, weak, and sick in a way I've never felt before and really never could have imagined. But, as my dad says, chemo is "the cure" and there is nothing to do but to let it run its course. Over the next few months, I plan to share my experiences, good and bad, as I go through chemotherapy and everything else related to that special word, cancer.
Hopefully, there will be people out there who can relate to what I'm going through, and hopefully I can make them laugh, or at least entertain them for few minutes while they're lying in a hospital bed or trying not to puke as they recover from their most recent cycle. Obviously, not every story will be funny, as I'm going to use this as an opportunity to vent my frustrations and to describe what this experience is really like. I'm not going to sugar-coat anything. I'm just going to be honest. The reality is that I'm dealing with a lot of frustration and anger, which I'm sure is natural, and are sentiments that I'm sure are shared with a lot of others.
My parents are never afraid to tell me that it's healthier to express your feelings than it is to bottle them up inside. Both of my parents, by the way, are therapists. The best way to explain what that was like growing up is to tell you that Psychology 101 was like one big review session. I've been to therapy, at their suggestion, but it wasn't for any real issue. When I was a junior in high school I got caught drinking, so I agreed to talk to someone so my parents could rest assured that I was taking a good approach to life.
I think I was on a good path. I think my approach was alright, but then this happened and my world was turned upside down. It doesn't matter anymore that I was going in the right direction, because now I don't really get to go anywhere. I'm either in the hospital or at home, and most of the time my body doesn't feel good, and it's hard. Really hard. Tough to put into words kind of hard. I know it's only harder if I don't keep a positive attitude, and I'm doing my best, but it's impossible to just "stay positive." Hence the title of this blog. Chemo≠Therapy. Chemo might put me back into therapy, but it certainly is not therapeutic. In the end, though, it is still "the cure," and the reason for which I write.
Before this, I would have called my recent behavior lazy, and I would never have allowed it to happen. But obviously, that word changes everything. Cancer. It's scary to even see it on the page in front of you. What's worse is that it can mean so many different things. There are an inordinate amount of disorders and illnesses under the umbrella of that word, many of which are put there simply because doctors and researchers have been unable to learn enough about them to call them anything else. And, I've realized, most people are made noticeably uncomfortable at its very mention.
Yesterday, for probably the first time since this whole nightmare began, I was feeling motivated. Considering the limited number of options at my disposal, I wanted to find something constructive to do with my time. After all, I plan to rejoin the ranks of normal daily life once I'm over this, so I think I should make the best of all this free time I have right now. Being alone at the time, I realized how often I am by myself, and it hit me, how easy it is to feel alone when you're sick like this. The support I've received from my friends and family has been great, but it's just inevitable that sometimes I feel like I'm all alone. I thought of all the other people going through the same thing as me, and how they probably feel the same things as I do. I thought of all the people who will someday be going through the same thing as me, but have no idea. I want this blog to be for all of them, and for anyone else who's interested. I want them to know that they are never alone, just as I know I'm not alone in this sickness.
One thing I'm sure a lot, if not all of us fighting cancer have in common is chemotherapy. Chemotherapy, according to dictionary.com, is the treatment of cancer using specific chemical agents or drugs that are selectively destructive to malignant cells and tissues. Of course, everyone knows that the definition doesn't tell the whole story. Different kinds of cancer call for different prescriptions of chemo drugs, but I'm pretty sure it's universal that chemo kills everything, not just the bad stuff. Chemo kills the cells lining the esophagus down to the cells that make up our blood. It makes you nauseous, dizzy, weak, and sick in a way I've never felt before and really never could have imagined. But, as my dad says, chemo is "the cure" and there is nothing to do but to let it run its course. Over the next few months, I plan to share my experiences, good and bad, as I go through chemotherapy and everything else related to that special word, cancer.
Hopefully, there will be people out there who can relate to what I'm going through, and hopefully I can make them laugh, or at least entertain them for few minutes while they're lying in a hospital bed or trying not to puke as they recover from their most recent cycle. Obviously, not every story will be funny, as I'm going to use this as an opportunity to vent my frustrations and to describe what this experience is really like. I'm not going to sugar-coat anything. I'm just going to be honest. The reality is that I'm dealing with a lot of frustration and anger, which I'm sure is natural, and are sentiments that I'm sure are shared with a lot of others.
My parents are never afraid to tell me that it's healthier to express your feelings than it is to bottle them up inside. Both of my parents, by the way, are therapists. The best way to explain what that was like growing up is to tell you that Psychology 101 was like one big review session. I've been to therapy, at their suggestion, but it wasn't for any real issue. When I was a junior in high school I got caught drinking, so I agreed to talk to someone so my parents could rest assured that I was taking a good approach to life.
I think I was on a good path. I think my approach was alright, but then this happened and my world was turned upside down. It doesn't matter anymore that I was going in the right direction, because now I don't really get to go anywhere. I'm either in the hospital or at home, and most of the time my body doesn't feel good, and it's hard. Really hard. Tough to put into words kind of hard. I know it's only harder if I don't keep a positive attitude, and I'm doing my best, but it's impossible to just "stay positive." Hence the title of this blog. Chemo≠Therapy. Chemo might put me back into therapy, but it certainly is not therapeutic. In the end, though, it is still "the cure," and the reason for which I write.
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