I'm pretty sure I'm the only person I know my age who's been to a sperm bank. That's unless any of my friends are lying to me, which is entirely possible.
Back when the diagnosis and the repercussions and the plans were all being laid out to me, the doctors told me that one aspect of chemo would be that my body would be unable to maintain its normal "metabolic fervor," we'll call it. It's not always the case, but more than likely my body would stop doing some things that it usually does. They told me my hair would probably fall out, which everyone knows, and while it would probably grow back, it might not be exactly the same color or consistency.
I'm not so concerned about my hair right now. I don't plan on entering any beauty pageants, and I have this peach fuzz thing going so I want to run with it for a while. For some reason, though, that was the first time I really confronted the possibility that this could keep me from having kids. I don't feel adversely towards adoption, and I'm sure I would adopt if I were married and it was the best option for my wife and I, but I just always expected that I would have kids. I'm obviously my dad's son, and he's his father's son, and so on, so it just seems natural to me that I would have children of my own someday.
Apparently, hair regrowth is much simpler than remembering how to make sperm. The doctors told me it was possible and sometimes it just takes a while, but the reality is that sometimes it never comes back. They told me that my best bet for having children would be to deposit at a bank where my sperm could be stored until I need them. All I had to do was make the deposit before chemo started, or else the viability of my specimen would be jeopardized.
Normally, this wouldn't have been a problem. We ordered the containers and I closed the curtains in the room and everything, but at this point in time I was still in crippling pain from the tumors and I couldn't temporarily cut off the I.V.'s flow of narcotics through my bloodstream. Whatever I was on was stronger than any morphine I could ever imagine, yet somehow the "pain team" was still at a loss every time I told them it wasn't managing my pain. It clouded my head though, that's for sure; I feel like I'm still reshuffling my thoughts. And, unfortunately, the prospect of me depositing into that cup was about as likely as me impregnating a stuffed animal. As it turned out, I had to wait until after my first round of chemo to really have a shot at making a deposit. If the chemo hadn't wiped out the pain the way it did, I don't know what would have happened. I guess I would still be in the same pain and hopped up on the same drugs, which honestly would have driven me insane.
I was relieved to learn that our bodies actually make sperm something like a month in advance, so whatever sperm was in me at the time had been made before the chemo had been administered. That meant there was a good chance some viable sperm would be left over, unless the chemo had killed every one of them. This time, I made an appointment at the bank to avoid the mailing process. My sperm's safety was of utmost importance to me, so I wanted to make sure it was hand-delivered and wouldn't get lost.
The sperm bank experience itself was rather uncomfortable. First, they sat me down in a conference room to ask me one last time if I knew what I was doing, and to confirm that my sperm would be offered to my parents before being destroyed if I were to die. Then, I was brought to a small room like would be at any doctor's office, except this one had a television with a leather swivel chair on the floor in front of it.
"The video's already in the DVD player," the woman said, instructing me to fill out the form and to use the equipment next to the t.v.
I laid paper towel out on the chair before sitting down, and it was unnerving to hear people walking down the hall outside the room, making what sounded like normal conversation while clearly in earshot of my wholesome entertainment. I wondered if anyone was keeping time on me, as I was still really nervous that I was on too much morphine and that the endeavor would fail. So I focused extra hard, but even after I was done I was convinced it hadn't worked.
I tried not to think about it too much as I waited for the results over the next day or so. And, as you can imagine, it came as such a pleasant surprise when I found out that my deposit had been successful. While my fish weren't actually swimming, they were good enough to work and that was good enough for me. I was so happy; I made three more deposits before my next chemo just to be safe. It felt as if a huge weight had been lifted from my shoulders. I guess I wanted to hold onto some idea of normality in my life, where things can still turn out the way I've always planned them. And now I know that as long as I can persevere, I can still make that happen.
Monday, September 28, 2009
Saturday, September 26, 2009
Late Night Thought
I had every intention of telling a story tonight, but then I just threw up. A lot. Pretty much everything I ate today. I thought I had a pretty good chance at keeping it all down, but that just wasn't the case.
And now I just feel like a liar because I can't think of anything other than why this is happening to me, and I swore not to do that. I just threw up and I don't want to get out of bed to do it again, and I know that everyone else my age is out on their Friday night doing what someone my age is supposed to be doing with their Friday night. I'm too sick to fall asleep, too alone not to cry, and all I know is that this is the closest I've ever felt to death and I'm praying with all my heart for it not to come any closer, though it's entirely out of my control. All I want is for someone to come here and be with me. Just wrap their arms around me. Just until I fall asleep.
And now I just feel like a liar because I can't think of anything other than why this is happening to me, and I swore not to do that. I just threw up and I don't want to get out of bed to do it again, and I know that everyone else my age is out on their Friday night doing what someone my age is supposed to be doing with their Friday night. I'm too sick to fall asleep, too alone not to cry, and all I know is that this is the closest I've ever felt to death and I'm praying with all my heart for it not to come any closer, though it's entirely out of my control. All I want is for someone to come here and be with me. Just wrap their arms around me. Just until I fall asleep.
Wednesday, September 23, 2009
Neutropenia
I've learned that there is a phase of a few days, generally starting around a week after the very beginning of a chemo cycle, when your white blood cell count is at its lowest. This means that your body's immune system is most susceptible to disease, a phenomenon called Neutropenia. For this reason, I begin taking Neupogen shots the day after each chemo cycle ends until my white blood cell counts come back high enough that the doctors are no longer worried about me getting sick before the next cycle. I, of course, loathe needles, and am entirely at the mercy of my parents who have both "learned" how to administer the shots.
The shots are supposed to be given to fatty areas on my body. But, having lost about 30 pounds since originally being admitted to the hospital, the only bit of fat I can find is on and around my buttocks. So, every night we take the shots out of the refrigerator about an hour before its administration, and I prepare the area with numbing cream and I ice it down to make it as numb as possible. Nevertheless, the shot is always painful and burns the whole way through. I can honestly feel the fluids entering my body from start to finish.
Anyway, the point of this story was that the week after my first cycle of chemo, I became very neutropenic. I was weak and tired and extremely nauseous, and we were told that if my temperature were to reach 100.4 degrees Fahrenheit, I must be taken immediately to the emergency room. I, of course, was determined to stay below that magic number and was laying in my bed, eating when I could, but on one particular day, things were simply out of my control. I felt progressively worse as the day went on, and my temperature rose accordingly until I hit exactly that magic number, and before I had the chance to plead my case my parents were already calling the hospital and one another in a complete frenzy, as if taking a few extra minutes to think things through would have ruined everything. I was skeptical regarding the need to go directly to the hospital, because I always thought that body temperatures fluctuate and could come back down just as quickly as mine had risen. Then, I climbed down the stairs to put numbing cream on my port so it could easily be activated at the hospital, whereafter I climbed back upstairs to grab some clothes in case I had to stay overnight. The climbing made me nauseous to the point that before I knew it my arms were draped over the toilet and I was violently throwing up any available stomach contents, which were scarce at the time. It was a meaningful experience to me because it was the lowest I had yet felt since it had all started, and I resented it like hell. My mother stood in the bathroom doorway watching me puke, waiting for me to be ready to go to the hospital. I resented her for that. I resented the miserable feeling in my stomach; the first time giving up really crossed my mind.
We rushed to the hospital, and I tried to ignore the bumps and stops and goes of the car ride, which, to this very day make me feel sick. Finally, we got to the Emergency Room, approached the nurse who was sitting at the computer and appeared to be in charge of things, and I gave her my name and told her I needed an isolation room, expecting results. My mom had already talked to a nurse on call, who said she had called down to the E.R. and they understood that in my situation I had to be put immediately into isolation and be given antibiotics. Conveniently, the nurse at the computer looked up at us and said something along the lines of, "Umm, your name isn't in the system, so there's nothing I can do for you right now. Please go take a seat with the others in the waiting room, and I will let you know when I can help you." She pointed over to the corner of the waiting room to where I assume she expected me to sit down and wait. And, despite the struggle I was already going through to maintain standing, I turned over to where she pointed only to find two open seats directly next to two other patients shivering underneath a dirty white bedsheet. I thought to myself, I might actually die if I go sit with them. Like seriously, I could actually die.
My mom tried pleading her case with the woman, who was clearly incompetent, and we sat in a staff room trying to figure out what to do until finally my mom got back in touch with the original nurse who had told us to come down to the E.R. It was then clarified that we were supposed to deal only with the pediatric E.R. Apparently, the adult E.R. here is a complete mess and should be avoided at all costs. Of course, there was no way for us to even know that there were separate Emergency Rooms and that one was the right one.
When we finally walked around to the pediatric E.R., I still had to go through the administrative stuff (checking vital signs, getting a bracelet confirming that I actually was me and not some sickly person posing as me), and they brought me to my own quiet room. But, after about twenty minutes of much needed rest, they told me I had to go to another room since the room I was in was reserved for something else. I was brought to a small, box-like room with a tiny wooden bed and a sink, not to mention a desk next to the door which doctors showed no remorse in using as their source for stocking up on whatever they needed. So, I was trying to cushion myself as best as I could in my small wooden bed, and doctors were regularly opening the door, apologizing, rummaging through the desks, and leaving, most times just leaving the door open. The walls, in this clinic, were paper-thin, and I'm pretty sure every other person admitted on that night was an infant with the lungs of a diva. Obviously, all I wanted to do was lay down and go to sleep, so that when I woke up the anti-biotics would have worked and it would all have been over and I could go home. The screaming, of course, was incessant.
We were given a nice surprise when one of the nurses sheepishly entered the room to tell us that they had given me an anti-biotic that was a close relative of penicillin. Now, this wouldn't be so much of a problem except that penicillin is the one thing in the world to which I'm allergic, or have been in the past. So, when I check into the clinic here, they ask me what I'm allergic to and I tell them penicillin, and they give me a bracelet so everyone knows. And still, before anything is given to me in I.V. form, they ask me my known allergies in order to make sure they are not about to give me something that could result in a terrible allergic reaction. Somehow, when the prescriptions were written on this particular night, one person's mistake got past three or so more levels of people meant to check on the work of person #1, all of whom were aware of my penicillin allergy. Then, in addition to trying in vain to fall asleep in the small wooden bed with the apologetic doctors coming in and out of the room for supplies and the deafening sountrack of crying babies, I had to try to manage my nausea and relax while worrying that at any moment I might break out into uncontrollable hives and who knows what else? Fortunately, the hives never came, which was a huge relief. The nurses, on the other hand, saw it as an opportunity to turn their potentially serious mistake into a groundbreaking revelation about my medical tolerance.
My mom and I spent 8 1/2 hours in that small room before an overnight room was ready for me. A short, stocky man then came to transfer me upstairs, and he had no trouble asking me what I was doing the children's oncology at my age. Even he had no idea that children's illnesses could have so broad a scope, but for me it was just added insult to injury. The incompetence of some hospital workers has never ceased to amaze me, but it was still shocking to me that it had taken so long to find a room, even though the nurse at the beginning of the night told the clinic that we were on our way when we left our house and would need a room. Even on days when it's scheduled for me to start chemo, I have to wait in the clinic for hours upon hours for a room to be ready for me and chemo usually starts somewhere betwen 9pm and 12am. And these are days when it's planned in advance for me to start chemo! I just don't understand it. It makes sense to me that hospitals have a limited number of beds at their disposal, but it isn't right to have me prepare for something as unenjoyable as chemo if you're not even going to do what you need to do to ensure that it happens for me.
It's just another example, I guess, of things being out of my control and just having to go with the flow as best I can. I could also mention that when my hemoglobin is low (which is like being anemic, or having an iron deficiency), they have to give me blood transfusions which can take anywhere from 5 to 10 hours and is never something I look forward to, but I suppose can help give me more energy. On the bright side, I haven't been severely Neutropenic since that first cycle when I'm sure my body was in great shock. My blood levels drop after each cycle, which tells us that the chemo is really working, but I've been good with the Neupogen shots and my immune system hasn't dropped the way it did that very first time. Furthermore, it seems like my body is now making its own platelets, which is a great sign for its ability to fight back against the bone marrow, hence, platelet-attacking tumor. My point to you, I guess would be that our bodies can get used to the treatment and you don't have to fear being weak and totally susceptible to illness every single cycle, though I know I'm sure I don't need to tell you to be cautious. It's a marathon, not a sprint, with these things. And the rollercoaster will inevitably have highs and lows. The better we deal with the lows, the better off we will be in the long run.
The shots are supposed to be given to fatty areas on my body. But, having lost about 30 pounds since originally being admitted to the hospital, the only bit of fat I can find is on and around my buttocks. So, every night we take the shots out of the refrigerator about an hour before its administration, and I prepare the area with numbing cream and I ice it down to make it as numb as possible. Nevertheless, the shot is always painful and burns the whole way through. I can honestly feel the fluids entering my body from start to finish.
Anyway, the point of this story was that the week after my first cycle of chemo, I became very neutropenic. I was weak and tired and extremely nauseous, and we were told that if my temperature were to reach 100.4 degrees Fahrenheit, I must be taken immediately to the emergency room. I, of course, was determined to stay below that magic number and was laying in my bed, eating when I could, but on one particular day, things were simply out of my control. I felt progressively worse as the day went on, and my temperature rose accordingly until I hit exactly that magic number, and before I had the chance to plead my case my parents were already calling the hospital and one another in a complete frenzy, as if taking a few extra minutes to think things through would have ruined everything. I was skeptical regarding the need to go directly to the hospital, because I always thought that body temperatures fluctuate and could come back down just as quickly as mine had risen. Then, I climbed down the stairs to put numbing cream on my port so it could easily be activated at the hospital, whereafter I climbed back upstairs to grab some clothes in case I had to stay overnight. The climbing made me nauseous to the point that before I knew it my arms were draped over the toilet and I was violently throwing up any available stomach contents, which were scarce at the time. It was a meaningful experience to me because it was the lowest I had yet felt since it had all started, and I resented it like hell. My mother stood in the bathroom doorway watching me puke, waiting for me to be ready to go to the hospital. I resented her for that. I resented the miserable feeling in my stomach; the first time giving up really crossed my mind.
We rushed to the hospital, and I tried to ignore the bumps and stops and goes of the car ride, which, to this very day make me feel sick. Finally, we got to the Emergency Room, approached the nurse who was sitting at the computer and appeared to be in charge of things, and I gave her my name and told her I needed an isolation room, expecting results. My mom had already talked to a nurse on call, who said she had called down to the E.R. and they understood that in my situation I had to be put immediately into isolation and be given antibiotics. Conveniently, the nurse at the computer looked up at us and said something along the lines of, "Umm, your name isn't in the system, so there's nothing I can do for you right now. Please go take a seat with the others in the waiting room, and I will let you know when I can help you." She pointed over to the corner of the waiting room to where I assume she expected me to sit down and wait. And, despite the struggle I was already going through to maintain standing, I turned over to where she pointed only to find two open seats directly next to two other patients shivering underneath a dirty white bedsheet. I thought to myself, I might actually die if I go sit with them. Like seriously, I could actually die.
My mom tried pleading her case with the woman, who was clearly incompetent, and we sat in a staff room trying to figure out what to do until finally my mom got back in touch with the original nurse who had told us to come down to the E.R. It was then clarified that we were supposed to deal only with the pediatric E.R. Apparently, the adult E.R. here is a complete mess and should be avoided at all costs. Of course, there was no way for us to even know that there were separate Emergency Rooms and that one was the right one.
When we finally walked around to the pediatric E.R., I still had to go through the administrative stuff (checking vital signs, getting a bracelet confirming that I actually was me and not some sickly person posing as me), and they brought me to my own quiet room. But, after about twenty minutes of much needed rest, they told me I had to go to another room since the room I was in was reserved for something else. I was brought to a small, box-like room with a tiny wooden bed and a sink, not to mention a desk next to the door which doctors showed no remorse in using as their source for stocking up on whatever they needed. So, I was trying to cushion myself as best as I could in my small wooden bed, and doctors were regularly opening the door, apologizing, rummaging through the desks, and leaving, most times just leaving the door open. The walls, in this clinic, were paper-thin, and I'm pretty sure every other person admitted on that night was an infant with the lungs of a diva. Obviously, all I wanted to do was lay down and go to sleep, so that when I woke up the anti-biotics would have worked and it would all have been over and I could go home. The screaming, of course, was incessant.
We were given a nice surprise when one of the nurses sheepishly entered the room to tell us that they had given me an anti-biotic that was a close relative of penicillin. Now, this wouldn't be so much of a problem except that penicillin is the one thing in the world to which I'm allergic, or have been in the past. So, when I check into the clinic here, they ask me what I'm allergic to and I tell them penicillin, and they give me a bracelet so everyone knows. And still, before anything is given to me in I.V. form, they ask me my known allergies in order to make sure they are not about to give me something that could result in a terrible allergic reaction. Somehow, when the prescriptions were written on this particular night, one person's mistake got past three or so more levels of people meant to check on the work of person #1, all of whom were aware of my penicillin allergy. Then, in addition to trying in vain to fall asleep in the small wooden bed with the apologetic doctors coming in and out of the room for supplies and the deafening sountrack of crying babies, I had to try to manage my nausea and relax while worrying that at any moment I might break out into uncontrollable hives and who knows what else? Fortunately, the hives never came, which was a huge relief. The nurses, on the other hand, saw it as an opportunity to turn their potentially serious mistake into a groundbreaking revelation about my medical tolerance.
My mom and I spent 8 1/2 hours in that small room before an overnight room was ready for me. A short, stocky man then came to transfer me upstairs, and he had no trouble asking me what I was doing the children's oncology at my age. Even he had no idea that children's illnesses could have so broad a scope, but for me it was just added insult to injury. The incompetence of some hospital workers has never ceased to amaze me, but it was still shocking to me that it had taken so long to find a room, even though the nurse at the beginning of the night told the clinic that we were on our way when we left our house and would need a room. Even on days when it's scheduled for me to start chemo, I have to wait in the clinic for hours upon hours for a room to be ready for me and chemo usually starts somewhere betwen 9pm and 12am. And these are days when it's planned in advance for me to start chemo! I just don't understand it. It makes sense to me that hospitals have a limited number of beds at their disposal, but it isn't right to have me prepare for something as unenjoyable as chemo if you're not even going to do what you need to do to ensure that it happens for me.
It's just another example, I guess, of things being out of my control and just having to go with the flow as best I can. I could also mention that when my hemoglobin is low (which is like being anemic, or having an iron deficiency), they have to give me blood transfusions which can take anywhere from 5 to 10 hours and is never something I look forward to, but I suppose can help give me more energy. On the bright side, I haven't been severely Neutropenic since that first cycle when I'm sure my body was in great shock. My blood levels drop after each cycle, which tells us that the chemo is really working, but I've been good with the Neupogen shots and my immune system hasn't dropped the way it did that very first time. Furthermore, it seems like my body is now making its own platelets, which is a great sign for its ability to fight back against the bone marrow, hence, platelet-attacking tumor. My point to you, I guess would be that our bodies can get used to the treatment and you don't have to fear being weak and totally susceptible to illness every single cycle, though I know I'm sure I don't need to tell you to be cautious. It's a marathon, not a sprint, with these things. And the rollercoaster will inevitably have highs and lows. The better we deal with the lows, the better off we will be in the long run.
Monday, September 21, 2009
Why Me?
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."
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."
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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