I just got a call from the clinic telling me that my blood levels are high enough for chemo tomorrow. They also told me that my platelets are in the same range as that of a normal person, which means that my body is making bone marrow. My platelets have more than quadrupled since the first chemo. It was my bone marrow that was being attacked by the tumor in the first place, and that's how it was found in the MRI.
It was such a relief to hear that news from the clinic. It seems like all of this suffering is actually paying off. So far, I'm responding to the treatment, and I know better than to take that for granted. I've been told that there are plenty of people with my disease who never respond at all. The tumor just never recedes, no matter how much chemo they receive. I don't know what that would mean, but I hate to believe it means they just don't have a chance.
The fact that this tumor is so unpredictable still scares me. I'm afraid one day the progress I'm making will suddenly stagnate and the tumor will just stay where it is. And even if it goes into remission, one of the problems with this tumor is the frequency with which it returns. I'm not even rid of it and I'm afraid of it coming back. Pretty ironic, huh? I guess that's just something I'm going to have to deal with. Priority number one is still kicking its ass right now, the first time.
I hope that fear only remains with me as a reminder to cherish every day I have as a gift. I know I was never the best at doing that before, but living every day in fear is certainly inspiration to change your way of viewing life. I've said before that fear is only what you allow it to be. If you let it become more than an unnecessary distraction, it can get in the way of life's enjoyment. That's not what I want. Everyone fears the unknown to some extent, but it's just like the "why me?" question; if I sit here wondering whether or not this thing is going to come back, it's only going to bother me and, again, I will never find an answer. I must know better than to do that. I have to do my best to focus my energy on the battle I'm fighting right now. Everything else is simply out of my control, so I'll leave it at that.
Today is a good day. The news from the clinic was fantastic, so I'll celebrate today as a good day. Still, the day before the next round of chemo is always bittersweet. Since it's the day furthest removed from the last chemo, it's the best I get to feel. It's the closest I ever get to feeling like myself. I also know how tomorrow's going to make me feel, and I dread waking up in the morning.
Nevertheless, I know I'll be there and on time for chemo tomorrow. No matter how difficult it is or how terrible I feel, the one thing that never fails is that time will always pass. Though slowly and sometimes painfully, nauseously and sometimes dizzily, time will pass and I will persevere until I reach the next day-before-chemo and I will feel this good again.
I keep telling myself that each round I will get stronger. After this chemo I'll recover faster than last time, throw up less, maybe take less morphine for the pain, pee normally, and set a better example for others than I have in the past. I know it's chemo and it's unpredictable, but it's the day before the cycle starts all over again, so for right now I've just got to believe.
Monday, October 5, 2009
Friday, October 2, 2009
These Are My Demands
I know that I've already shared how frustrated I can get with the hospital staff, and I'm aware that it reflects my impatience with them just as much as their shortcomings, but in my position I feel every right to demand certain results. When the pediatric E.R. knows I'm coming in an hour before my arrival and I need something very particular, I think preparations should be made to give me what I need in a timely fashion. The last thing I want to do is spend any more time in the hospital than is really necessary. Let's be honest, I only get so much time in between rounds of chemo, and even less of that time is spent feeling good. It should go without saying that if I'm in the hospital, I don't want to be there. Nobody does, I know, but get me in and out as quickly as possible. If I'm only peeing in a cup, you don't need to leave for half an hour. It doesn't take anyone half an hour to pee in a cup. At least I don't think it does. A little more time efficiency, that's what I'm asking for.
I'm only half referring to my Neutropenia incident. Unfortunately, I spent the entire night in the emergency room two nights ago. Clearly, I wasn't thrilled about it, but this time the reason is a little bit more embarrassing than the first time and I'm a little hesitant to talk about it, so bear with me.
For some reason, chemo seems to heat up all my insides. When I burp, it's a full body experience. Everything shakes like my own mini-earthquake, and I blow hot air like some kind of dragon. It's a surprise to me I can't yet spit fire. But in addition to that, I get these stomach aches that feel like the lining of my stomach is burning. I don't have proof, but it's just what I think and it's part of my explanation of what happened the other night. The fact that I receive hours of fluids every night after chemo to protect my bladder is one thing working in my favor.
Anyway, the other night I noticed a wee bit of blood in my urine. Peeing had been slightly painful for a day or two, but like all my other little ailments I attributed it to the chemo. Still, I don't think I could ever really be mentally prepared to see blood coming from there. I apologize for the obvious gender bias to that statement, but it shocked the hell out of me and I was, to speak plainly, freaking out. Still, the last thing I wanted to do was go to the hospital. It was clear to me that the chemo had somehow caused some kind of small cut down there. I called the clinic to be safe, and they told me that as long as I was feeling alright I didn't need to worry, but that the next day when I went to get my blood taken I should have a urinalysis as well to rule out any infection.
Five minutes later, they called back to tell me I had to go to the emergency room.
I'm convinced that everything could have been done so much faster once I got to the E.R. They brought me in immediately, which gave me false hope, because the next thing I knew I was waiting again in some tiny room as if I had come to see some fancy, expensive doctor. It took forever for them to bring me a cup, and then to come back and get it, and then to access my port so they could give me the fluids that took forever to hook up to the wires that hung from my chest all night as I cursed the sky (ceiling, really) from that familiarly uncomfortable, thinly padded wooden table.
After nine and a half hours of Animal Planet, which I must say had some damn good programming, I gave the nurse a urine sample that was blood-free. If you ask me, I was ready to do it hours earlier, but they didn't ask.
Yesterday, the pain was still there and with close examination I confirmed that my suspicion actually was the case. I called the clinic to ask what to do, and the doctor to whom I was speaking obviously had to rule some things out. She asked me if I was sexually active. I told her "I wish." She continued that my culture had come back negative for infection, so the best explanation for the discomfort was, in fact, a small cut, and that I should put some cream on it.
The frustrating thing is that I could have told her the problem to begin with. I didn't have to go to the E.R. and spend all night getting those fluids to flush my system. They had to rule out hemorrhaging, though, which I guess is a good reason to have me come all the way there. It's just that, like I said, I don't get that many good days and the last place I want to spend any part of them is the hospital. Thanks to chemo, though, which is both my savior and my foe, I have to do plenty of things I don't really want to do, like pee blood.
So I wish I could demand more time efficiency in the E.R. Very wishful thinking, I know. Furthermore, when I'm ready to come in for chemo, I think they should be ready to take me. It's why we plan it in advance, isn't it? The nurses have already figured out who on my team is working the days I'm scheduled for chemo, and that's how it's never a surprise to them when I show up. There's usually a friendly face ready to greet me when I get up to the floor, which is something I really don't take for granted. It's always a refreshing moment in a painfully annoying process. It's always after I've spent hours downstairs in the clinic, waiting to make sure my blood levels are acceptable or "getting a head start" on the six hours of pre-chemo hydration because my room is still being cleaned from the last patient. So, again, I never take a friendly face for granted.
That said, I'm not afraid of letting people know how I'm feeling. Sitting here, I realize you're probably aware of that already, but it leads me where I'm going, so I state the obvious. If I need to get something off my chest, off it comes.
The first time I went in for my five-day chemo, I was truly anticipating a single room. It had not even crossed my mind that I might be sharing a room with someone else for five days. Now, it's not that I can't coexist, I've obviously had roommates in the past, but when I'm in for chemo I really like having my own space. More important than having my own space, however, is having my own bathroom. Judging from experience, there is nothing worse than sharing a bathroom in the pediatric oncology ward. For one thing, the other patient's parents will probably have no problem using that bathroom, though they're not supposed to. For another thing, the other patient and parents will probably have no problem peeing all over the seat and the floor without feeling the need to wipe it up. I know I've boasted the convenience of the plastic urinal, but not everything can be done in the plastic urinal, and it's really not fair for me to have to wipe up someone else's pee in order to use the toilet in my own hospital room. Nevertheless, I've done it.
So, you can probably imagine my disappointment on this day when they brought me to a double room. Honestly, I was really pissed off. I was about to be in there for five straight days, and I expressed to the charge nurse my extreme preference for a single room. She, of course, told me that there were none available and likely wouldn't be for at least a few days. Unfortunately for her, she also said something else.
"I know how you feel," she said.
The first time she said it, I didn't really notice. I was visibly upset, and she had immediately gone defense mode on me. I continued to explain to her that since I was admitted for such a lengthy stay, it was really only fair for me to have a single room. And, standing in the double room they had given me, it was easily noticeable that behind the other curtain, my roommate, was none other than a crying baby. As you know, I love crying babies.
"I know how you feel," was the first thing out of this charge nurse's mouth in response to everything I said.
After a while, it really started to bother me. In fact, I thought to myself, "what's the most obnoxious thing you can say to someone with cancer, unless you've ever had cancer yourself?" If you guessed, "I know how you feel," you're exactly right.
Finally, after about the eighth time she said it, I interrupted whatever waste was subsequently falling out of her mouth. "Please don't say that to me again," I said, looking her straight in the eye.
She immediately adopted a more considerate, less dismissive tone, but it really took until that moment for her to stop acting like I was being an imposition on her and to take my request seriously. More importantly, I suppose, is that she didn't say it again.
It took two days for them to find me a single room, but the last two times I've been back for chemo, they've brought me straight to a single room. I don't want to say I hope it was a lesson learned, but I will say that I hope the trend continues. Furthermore, I will make a conscious effort to be more patient with the nurses. Being demanding may get me results, but maybe karma will keep me out of the E.R.
I'm only half referring to my Neutropenia incident. Unfortunately, I spent the entire night in the emergency room two nights ago. Clearly, I wasn't thrilled about it, but this time the reason is a little bit more embarrassing than the first time and I'm a little hesitant to talk about it, so bear with me.
For some reason, chemo seems to heat up all my insides. When I burp, it's a full body experience. Everything shakes like my own mini-earthquake, and I blow hot air like some kind of dragon. It's a surprise to me I can't yet spit fire. But in addition to that, I get these stomach aches that feel like the lining of my stomach is burning. I don't have proof, but it's just what I think and it's part of my explanation of what happened the other night. The fact that I receive hours of fluids every night after chemo to protect my bladder is one thing working in my favor.
Anyway, the other night I noticed a wee bit of blood in my urine. Peeing had been slightly painful for a day or two, but like all my other little ailments I attributed it to the chemo. Still, I don't think I could ever really be mentally prepared to see blood coming from there. I apologize for the obvious gender bias to that statement, but it shocked the hell out of me and I was, to speak plainly, freaking out. Still, the last thing I wanted to do was go to the hospital. It was clear to me that the chemo had somehow caused some kind of small cut down there. I called the clinic to be safe, and they told me that as long as I was feeling alright I didn't need to worry, but that the next day when I went to get my blood taken I should have a urinalysis as well to rule out any infection.
Five minutes later, they called back to tell me I had to go to the emergency room.
I'm convinced that everything could have been done so much faster once I got to the E.R. They brought me in immediately, which gave me false hope, because the next thing I knew I was waiting again in some tiny room as if I had come to see some fancy, expensive doctor. It took forever for them to bring me a cup, and then to come back and get it, and then to access my port so they could give me the fluids that took forever to hook up to the wires that hung from my chest all night as I cursed the sky (ceiling, really) from that familiarly uncomfortable, thinly padded wooden table.
After nine and a half hours of Animal Planet, which I must say had some damn good programming, I gave the nurse a urine sample that was blood-free. If you ask me, I was ready to do it hours earlier, but they didn't ask.
Yesterday, the pain was still there and with close examination I confirmed that my suspicion actually was the case. I called the clinic to ask what to do, and the doctor to whom I was speaking obviously had to rule some things out. She asked me if I was sexually active. I told her "I wish." She continued that my culture had come back negative for infection, so the best explanation for the discomfort was, in fact, a small cut, and that I should put some cream on it.
The frustrating thing is that I could have told her the problem to begin with. I didn't have to go to the E.R. and spend all night getting those fluids to flush my system. They had to rule out hemorrhaging, though, which I guess is a good reason to have me come all the way there. It's just that, like I said, I don't get that many good days and the last place I want to spend any part of them is the hospital. Thanks to chemo, though, which is both my savior and my foe, I have to do plenty of things I don't really want to do, like pee blood.
So I wish I could demand more time efficiency in the E.R. Very wishful thinking, I know. Furthermore, when I'm ready to come in for chemo, I think they should be ready to take me. It's why we plan it in advance, isn't it? The nurses have already figured out who on my team is working the days I'm scheduled for chemo, and that's how it's never a surprise to them when I show up. There's usually a friendly face ready to greet me when I get up to the floor, which is something I really don't take for granted. It's always a refreshing moment in a painfully annoying process. It's always after I've spent hours downstairs in the clinic, waiting to make sure my blood levels are acceptable or "getting a head start" on the six hours of pre-chemo hydration because my room is still being cleaned from the last patient. So, again, I never take a friendly face for granted.
That said, I'm not afraid of letting people know how I'm feeling. Sitting here, I realize you're probably aware of that already, but it leads me where I'm going, so I state the obvious. If I need to get something off my chest, off it comes.
The first time I went in for my five-day chemo, I was truly anticipating a single room. It had not even crossed my mind that I might be sharing a room with someone else for five days. Now, it's not that I can't coexist, I've obviously had roommates in the past, but when I'm in for chemo I really like having my own space. More important than having my own space, however, is having my own bathroom. Judging from experience, there is nothing worse than sharing a bathroom in the pediatric oncology ward. For one thing, the other patient's parents will probably have no problem using that bathroom, though they're not supposed to. For another thing, the other patient and parents will probably have no problem peeing all over the seat and the floor without feeling the need to wipe it up. I know I've boasted the convenience of the plastic urinal, but not everything can be done in the plastic urinal, and it's really not fair for me to have to wipe up someone else's pee in order to use the toilet in my own hospital room. Nevertheless, I've done it.
So, you can probably imagine my disappointment on this day when they brought me to a double room. Honestly, I was really pissed off. I was about to be in there for five straight days, and I expressed to the charge nurse my extreme preference for a single room. She, of course, told me that there were none available and likely wouldn't be for at least a few days. Unfortunately for her, she also said something else.
"I know how you feel," she said.
The first time she said it, I didn't really notice. I was visibly upset, and she had immediately gone defense mode on me. I continued to explain to her that since I was admitted for such a lengthy stay, it was really only fair for me to have a single room. And, standing in the double room they had given me, it was easily noticeable that behind the other curtain, my roommate, was none other than a crying baby. As you know, I love crying babies.
"I know how you feel," was the first thing out of this charge nurse's mouth in response to everything I said.
After a while, it really started to bother me. In fact, I thought to myself, "what's the most obnoxious thing you can say to someone with cancer, unless you've ever had cancer yourself?" If you guessed, "I know how you feel," you're exactly right.
Finally, after about the eighth time she said it, I interrupted whatever waste was subsequently falling out of her mouth. "Please don't say that to me again," I said, looking her straight in the eye.
She immediately adopted a more considerate, less dismissive tone, but it really took until that moment for her to stop acting like I was being an imposition on her and to take my request seriously. More importantly, I suppose, is that she didn't say it again.
It took two days for them to find me a single room, but the last two times I've been back for chemo, they've brought me straight to a single room. I don't want to say I hope it was a lesson learned, but I will say that I hope the trend continues. Furthermore, I will make a conscious effort to be more patient with the nurses. Being demanding may get me results, but maybe karma will keep me out of the E.R.
Monday, September 28, 2009
The Bank
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.
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.
Subscribe to:
Posts (Atom)
