By the second semester of my senior year in college, I had completed all of my educational requirements for graduation. That's just the way I am; I busted my ass and did what I had to do early on so that I could take it easy and enjoy my last few months as a collegiate undergrad.
To complement my coursework in what one would generally call "real subjects," I decided to take a badminton class. It was fun, stress-free, and just what I was looking for. And, though I had never truly studied or trained in the sport, my relative coordination and athleticism, paired with the, call it "studious," nature of most of my peers, immediately made me one of the most competitive players in the class.
There was one guy who had been ranked something like #7 in the state of California as a high school player, and few of us could give him a workout. Personally, I had no idea that badminton was even a high school sport anywhere in the country. Furthermore, I made the decision that it was entirely unnecessary for anyone to ever be that good at badminton, so this guy really did nothing but piss me off. I mean, he'd come to class in jeans, sweat profusely through his white tee-shirt, and smash the little birdie down little girls' throats.
"Play me in anything with a ball," I'd say, "and I'll put you in your place."
I can remember swinging that racquet and feeling this sharp pain in my shoulder; a pain that had never been there before. I stretched, warmed up, and passed it off as some tear somewhere in there that I'd play through, just like every other nagging injury I'd overcome in my athletic career.
I realize now what that pain really was, and that if I'd done something about it then, some seventeen or so months before diagnosis, the entire trajectory of my cancer-consumed life might have been different. Still, there's no guarantee of that, and talking about it is neither useful nor the reason why I'm telling this story.
"So what are you going to do after you graduate?" a girl asked me one day as we were sitting next to a court, resting after a game.
"I'm going to be a rockstar," I said, having no interest in small talk.
She laughed. "No, seriously, do you have any plans?"
I looked her straight in the eye, and I said, "Seriously, I'm going to be a rockstar."
She shook her head and looked at me as if I were a crazy person. I didn't expect her to react otherwise; this girl hardly knew me. But the thing was, I meant it.
Music has been ingrained in my soul since before I could speak; lyrics have become my religion, and the breadth of emotions music can make me feel has helped carry me through some of the most hopeless of times and most desperate of days.
At the time, my band, Almost 6'6", had been together for about 3 or 4 years. I played basketball in college with our piano player, and the other singer has been my best friend my entire life. We started writing music together in college, and when we graduated, we knew it was the time to follow our dreams.
Months went by, and we met different people who promised us different things and offered us different opportunities, most of whom were full of it. Nevertheless, the commonality amongst all of them was their love for our music. It was clear to us that the sound we were creating could really reach people.
It took until May, almost a year after graduation, but good fortune and coincidence landed us a manager who loved and was passionate about our music. I'm not talking just any manager, either; I'm talking decades of success with high-profile talents and a significant amount of respect in the industry.
He brought us right to a producer; a legendary drummer by trade, whose name has become universal and whose craft is synonymous with greatness (both manager and producer will remain nameless prior to my receiving their express permission to release identities).
Inevitably, our new drummer/producer loved us, too. He filled the band with his own musicians, and after a few rehearsals, we were ready to start recording.
May, June, and the beginning of July were spent perfecting three master tracks, with the intention of handing them to our manager and allowing him to work his magic.
June had brought with it mysterious back pain, which, like everything else, I thought I could just push through. By July, recording sessions had become only bearable if I popped Percocet like tic-tacs. Blood tests yielded no answers; chiropractors the same.
Initial responses from label execs were more than we could ask for. Meetings, showcases, negotiations were soon to follow. We were right there; where every band, every kid with a dream wants to be. Every time we were together, the excitement was tangible. We had momentum, we had the right people with us, and we were getting to do it with our best friends.
The day after my last vocal recording session was the first free evening I had in weeks, so I finally went for an MRI. The following work day barely had time to start before my doctor's office called me to come in and speak about the results.
"It's going to have to wait until the afternoon," I said. "I'm at work right now."
"No, sir," came the response. "You need to come here right now."
So began weeks of hospitalization, tests, bone marrow biopsies, pain pumps, fear, confusion, and the beginning of this hell I've learned to call reality.
I've talked about the pain. I've talked about the sadness. I've talked about how hard and how frustrating it is to wake up every day and feel like I'm in somebody else's body, and how badly I just want to feel like myself again. I've talked about it all, I think.
I've done my best and tried my hardest with every single procedure, every single day of my treatment, gearing myself towards recovery. That way, when it's all said and done, I won't have any regrets.
But it hurts to think of where we were when all of this happened. It hurts that we were closer than so many people ever get to be, and that we may never get back there again. It hurts that it's because of me that we had to cancel the meetings, put everything on hold, and lose all of our momentum. Sure, maybe we can get back to where we were, and we're trying. Our talent is still there; our potential, too, and maybe now our story is more touching. But if I and my best friends never get to sign that deal, record that album, hear that first single on the radio, I can't help but wonder if things might have been different had I never gotten sick.
I try to leave these stories with a positive message; a sense of hope. There's always hope. Without it, we're lost. But the truth is, I'm carrying a lot of pain. Sometimes I can keep myself from feeling it; distract myself, I guess. But it's always there. Knowing my potential and wondering if I'll ever get to reach it or see it fulfilled...that hurts.
I guess I just thought it was time to tell a little bit about who I really am.
Monday, December 13, 2010
Friday, November 5, 2010
A Bitter Taste Left in My Mouth
I get the feeling that it's time for an update. It just gets hard to keep talking about this stuff all the time. There's always something going on, and I hate being asked about it. I know it's just because people care, but I don't want to be asked how I'm feeling anymore. I'm tired of explaining what's wrong; I'm even more tired of something always being wrong. Something always hurts, and it makes it hard to keep waking up every day and realizing all over again the reality in which I live. I like to think that I've stopped wishing it were a nightmare and that I'd suddenly awaken from it, but truthfully, I don't know if I'll ever stop wishing that.
I thought I'd seen all of the side effects these drugs had to offer. I've been nauseous, thrown up, been admitted to the hospital with fever, peed blood, had no energy, seen my blood counts drop and immune system depressed, had cramps, diarrhea, constipation, bone pain, muscle pain, headaches, and there have been many moments when it just hasn't seemed worth it to keep going.
The first two weeks of this new regimen were a piece of cake. The infusions were quick and painless, the pills didn't make me nauseous or give me diarrhea, though the combination thereof made me constipated, and the radiation had not yet begun to take its toll.
A few days before my birthday, about a week into October, I started to feel sores forming in my mouth. I had been told that the radiation might hurt my throat, and it was becoming difficult to swallow and eat. The sores made it painful to chew; I was already making the transition to soft foods, like soup and oatmeal.
The next three-plus weeks were an absolute nightmare. The sores got worse, and before I knew it my whole mouth and tongue, cheeks and gums were like one big sore. Volatile white growths formed a coating over almost everything I could see, and my throat was packed with mucus on which I gagged and threw up countless times. Of course, there was very little to throw up other than mucus and bile.
It hurt to speak, and I eventually lost my voice. It hurt to drink water, the sores on and around my tongue were so sensitive. I couldn't eat at all for a little more than a week, and when I could finally manage to drink anything, it was through a straw. I lost about 15lbs. over that time, and we're talking about weight that I didn't really have to spare in the first place.
The hair around the areas where the radiation was taking place fell out, which is, I'll admit, a minor detail, but I've just recently been able to cut down on the steady diet of pain killers which have managed to keep my life halfway bearable over the past month. Those, and, of course, my "personal nurse" girlfriend who, if I could, I would take everywhere with me. She's been like my angel; words cannot describe my gratefulness for having her as my own. I think she could make me smile in an earthquake.
It became apparent to my doctor that the combination of chemo and radiation was having an adverse affect on me, and I'm lucky we stopped the chemo when we did, because I can't begin to imagine how much worse things could have gotten. I mean, I had no idea they could ever be as bad as they were. The worst part was probably having to finish the second half of radiation; to show up every day in this excruciating pain, knowing that what I was about to do would only make it worse, but that I had no choice other than to stay the course. It was brutal.
At this point, I can drink without a straw. I can eat soft things, but the sores on my tongue require that it remain a very delicate process. I can swallow my food, though my throat hurts like it's been burnt to a crisp by laser beams...wait, that's exactly what has happened to it.
Aside from the pain and discomfort, I can't taste a thing. Even water tastes bitter, which seems somewhat fitting, but other than that disgusting bitterness, nothing else registers. I know what things are supposed to taste like, but everything is just bland. And, if you know me at all, I've always been an eater. I can't remember if I've said this before, but growing up, my grandparents always reveled in the fact that I was such a "good eater." I had no idea eating was something someone could be good at, but I was good at it. I've always loved to eat. Everyone who knows me knows that. Taking away my taste buds is like taking the voice from a singer...wait, that's exactly what just happened to me, too.
I regained my speaking voice a few days ago. Though shaky at first, I can finally rely on it to last through the day. It may still be a while before I sing.
Last year, I wrote about my birthday as a cause for celebration. We did celebrate again this year, though it didn't feel quite as festive due to the festering sores which, though uninvited, attended my dinner party nonetheless. My family festivities had to be postponed on my actual birthday, despite plans to have a nice dinner. My inability to chew, swallow, or taste anything kind of put a damper on those plans, and I'm still waiting for the latter to recover before rescheduling.
Earlier this week, having been two weeks removed from the end of radiation, we resumed chemo treatment. And as of yet, I have no way of knowing if this new plan is working. I can only hope so, because, if not, we're just giving this thing more time to grow.
I think the drugs are working, because when I was on them at first, I began to feel a little better. And, now that I'm back on them, albeit at a lower dose due to the catastrophe of last month, I feel good about it again. I can only hope that my hunch is correct, but I generally trust my hunches. Besides, even if these drugs aren't working, we'll move on to the next idea and find something that does work. Either way, I'm going to win.
I haven't wavered in that belief; I think it's the only way to approach it. It just gets hard to keep saying it in the face of such misfortune and pain. I had no idea such a reaction to that treatment was possible; there were many days I wanted to do nothing but cry, the pain was so intense. There were other days when I couldn't think of anything other than wanting to do a word that rhymes with cry; a word that I'll not mention, since the whole idea here is to avoid it.
The destination remains the same, as far as I'm concerned, though the journey has taken some unpredictable turns; the course has meandered. It's all part of the bigger story, I guess, because let's face it: this whole thing is a deviation from the path; a mistake that I can't correct.
I'll keep facing these obstacles, and I'll keep conquering them. I have no fear, and I believe in myself. None of that has changed. I will, however, never again presume to think that I've seen all of the ugliness these drugs can conjure. They seem to have a mind of their own, much like the enemy inside me. I just hope my side wins.
I thought I'd seen all of the side effects these drugs had to offer. I've been nauseous, thrown up, been admitted to the hospital with fever, peed blood, had no energy, seen my blood counts drop and immune system depressed, had cramps, diarrhea, constipation, bone pain, muscle pain, headaches, and there have been many moments when it just hasn't seemed worth it to keep going.
The first two weeks of this new regimen were a piece of cake. The infusions were quick and painless, the pills didn't make me nauseous or give me diarrhea, though the combination thereof made me constipated, and the radiation had not yet begun to take its toll.
A few days before my birthday, about a week into October, I started to feel sores forming in my mouth. I had been told that the radiation might hurt my throat, and it was becoming difficult to swallow and eat. The sores made it painful to chew; I was already making the transition to soft foods, like soup and oatmeal.
The next three-plus weeks were an absolute nightmare. The sores got worse, and before I knew it my whole mouth and tongue, cheeks and gums were like one big sore. Volatile white growths formed a coating over almost everything I could see, and my throat was packed with mucus on which I gagged and threw up countless times. Of course, there was very little to throw up other than mucus and bile.
It hurt to speak, and I eventually lost my voice. It hurt to drink water, the sores on and around my tongue were so sensitive. I couldn't eat at all for a little more than a week, and when I could finally manage to drink anything, it was through a straw. I lost about 15lbs. over that time, and we're talking about weight that I didn't really have to spare in the first place.
The hair around the areas where the radiation was taking place fell out, which is, I'll admit, a minor detail, but I've just recently been able to cut down on the steady diet of pain killers which have managed to keep my life halfway bearable over the past month. Those, and, of course, my "personal nurse" girlfriend who, if I could, I would take everywhere with me. She's been like my angel; words cannot describe my gratefulness for having her as my own. I think she could make me smile in an earthquake.
It became apparent to my doctor that the combination of chemo and radiation was having an adverse affect on me, and I'm lucky we stopped the chemo when we did, because I can't begin to imagine how much worse things could have gotten. I mean, I had no idea they could ever be as bad as they were. The worst part was probably having to finish the second half of radiation; to show up every day in this excruciating pain, knowing that what I was about to do would only make it worse, but that I had no choice other than to stay the course. It was brutal.
At this point, I can drink without a straw. I can eat soft things, but the sores on my tongue require that it remain a very delicate process. I can swallow my food, though my throat hurts like it's been burnt to a crisp by laser beams...wait, that's exactly what has happened to it.
Aside from the pain and discomfort, I can't taste a thing. Even water tastes bitter, which seems somewhat fitting, but other than that disgusting bitterness, nothing else registers. I know what things are supposed to taste like, but everything is just bland. And, if you know me at all, I've always been an eater. I can't remember if I've said this before, but growing up, my grandparents always reveled in the fact that I was such a "good eater." I had no idea eating was something someone could be good at, but I was good at it. I've always loved to eat. Everyone who knows me knows that. Taking away my taste buds is like taking the voice from a singer...wait, that's exactly what just happened to me, too.
I regained my speaking voice a few days ago. Though shaky at first, I can finally rely on it to last through the day. It may still be a while before I sing.
Last year, I wrote about my birthday as a cause for celebration. We did celebrate again this year, though it didn't feel quite as festive due to the festering sores which, though uninvited, attended my dinner party nonetheless. My family festivities had to be postponed on my actual birthday, despite plans to have a nice dinner. My inability to chew, swallow, or taste anything kind of put a damper on those plans, and I'm still waiting for the latter to recover before rescheduling.
Earlier this week, having been two weeks removed from the end of radiation, we resumed chemo treatment. And as of yet, I have no way of knowing if this new plan is working. I can only hope so, because, if not, we're just giving this thing more time to grow.
I think the drugs are working, because when I was on them at first, I began to feel a little better. And, now that I'm back on them, albeit at a lower dose due to the catastrophe of last month, I feel good about it again. I can only hope that my hunch is correct, but I generally trust my hunches. Besides, even if these drugs aren't working, we'll move on to the next idea and find something that does work. Either way, I'm going to win.
I haven't wavered in that belief; I think it's the only way to approach it. It just gets hard to keep saying it in the face of such misfortune and pain. I had no idea such a reaction to that treatment was possible; there were many days I wanted to do nothing but cry, the pain was so intense. There were other days when I couldn't think of anything other than wanting to do a word that rhymes with cry; a word that I'll not mention, since the whole idea here is to avoid it.
The destination remains the same, as far as I'm concerned, though the journey has taken some unpredictable turns; the course has meandered. It's all part of the bigger story, I guess, because let's face it: this whole thing is a deviation from the path; a mistake that I can't correct.
I'll keep facing these obstacles, and I'll keep conquering them. I have no fear, and I believe in myself. None of that has changed. I will, however, never again presume to think that I've seen all of the ugliness these drugs can conjure. They seem to have a mind of their own, much like the enemy inside me. I just hope my side wins.
Sunday, September 26, 2010
The New Next Step
This week begins the new next leg of my treatment, made necessary by the revelation that the old treatment plan was no longer working. I'll be heading back to radiation, this time for spots on my neck and hip. I'm hopeful that the radiation therapy will be as successful as it was the first time. If you remember, I had seven weeks of radiation on my shoulders, and fortunately, it seems that my shoulders are no longer as worrisome as they were a few months ago.
I will also begin a new chemo regimen, which includes a daily oral medication and an IV infusion once a week. It's going to be more low dose chemo, since there's a limit to the dosage I can be given during radiation. I recognize the oral drug as one I was given through IV during my fourteen rounds of high dose chemo, days I recall fondly as full of wondrous enjoyment...That was a joke.
The doctors think I'll be able to tolerate this new regimen fairly well, since I've managed to push through everything as well as I have so far. I'm sure I'll experience the regular nausea and stomach pain, and the docs aren't sure whether or not I'll lose my hair. We all know how anxiously I awaited its return, so you can probably guess my feelings about possibly losing it again.
If the chemo can at least keep the tumor from spreading, then we can go after the new spots a few at a time with radiation, until they're all gone. It sounds incredibly simple. In practice, it's probably not. There's just no way of knowing what might happen with the new treatment.
The journey is obviously going to take longer than I had anticipated. I get that, and it's fine. I'm okay with it. I'm in a much better place now than I was a year ago; better than some had predicted I might ever be. But again, I don't care about the numbers. I don't care about statistics, and if you tell me I can't do something, I'm going to try to prove you wrong. Doctors are no exception. Check that: If you tell me I can't do something, I'm going to try to prove you wrong, especially if you're a doctor. That's the way I am. Hopefully it will serve me well.
I understand that having a positive outlook on things is thought to help people in my situation. If I believe I'm going to get better, then somehow I have a better chance of actually getting better. But at some point, I am at the mercy of doctors and drugs and whether or not they're capable of killing this monster inside of me. It's a helpless feeling. I've been told to redirect my anger and frustration towards the illness. Trust me, I've said things to my illness that should not be repeated in a public forum. I'll continue to focus my anger in its direction. I just hope my words and wishes hurt its feelings to the point that it's incredibly vulnerable, and this new treatment kicks its ass.
The right mental approach can only go so far. Maybe it will combine with this new drug and the new form of the old drug to create an unstoppable force; a force for which the toughest, nastiest, sneakiest of opponents will be no match.
I will also begin a new chemo regimen, which includes a daily oral medication and an IV infusion once a week. It's going to be more low dose chemo, since there's a limit to the dosage I can be given during radiation. I recognize the oral drug as one I was given through IV during my fourteen rounds of high dose chemo, days I recall fondly as full of wondrous enjoyment...That was a joke.
The doctors think I'll be able to tolerate this new regimen fairly well, since I've managed to push through everything as well as I have so far. I'm sure I'll experience the regular nausea and stomach pain, and the docs aren't sure whether or not I'll lose my hair. We all know how anxiously I awaited its return, so you can probably guess my feelings about possibly losing it again.
If the chemo can at least keep the tumor from spreading, then we can go after the new spots a few at a time with radiation, until they're all gone. It sounds incredibly simple. In practice, it's probably not. There's just no way of knowing what might happen with the new treatment.
The journey is obviously going to take longer than I had anticipated. I get that, and it's fine. I'm okay with it. I'm in a much better place now than I was a year ago; better than some had predicted I might ever be. But again, I don't care about the numbers. I don't care about statistics, and if you tell me I can't do something, I'm going to try to prove you wrong. Doctors are no exception. Check that: If you tell me I can't do something, I'm going to try to prove you wrong, especially if you're a doctor. That's the way I am. Hopefully it will serve me well.
I understand that having a positive outlook on things is thought to help people in my situation. If I believe I'm going to get better, then somehow I have a better chance of actually getting better. But at some point, I am at the mercy of doctors and drugs and whether or not they're capable of killing this monster inside of me. It's a helpless feeling. I've been told to redirect my anger and frustration towards the illness. Trust me, I've said things to my illness that should not be repeated in a public forum. I'll continue to focus my anger in its direction. I just hope my words and wishes hurt its feelings to the point that it's incredibly vulnerable, and this new treatment kicks its ass.
The right mental approach can only go so far. Maybe it will combine with this new drug and the new form of the old drug to create an unstoppable force; a force for which the toughest, nastiest, sneakiest of opponents will be no match.
Tuesday, September 21, 2010
A Little More Than Just A Bump In The Road
I always figured I knew the beginning and the end of my story. The beginning, of course, was when I got sick. The end, then, would be when I'm no longer sick. In my mind, the bookends were there. All I had to do was fill in the middle, make it interesting, and everyone would love me for it. I suppose that's not exactly fair to you, reading my story, wishing me well and hoping that my next entry might be the one in which I bid good riddance to this disease.
I figured, "Well, I'm the one who's sick, I'm the one who has to deal with all of this, so why shouldn't I exploit it for what it is?" Everybody loves a happy ending; everybody likes to feel uplifted; to believe in miracles. People just want to be inspired, right? I think we maintain faith in an almighty power in order to feel less alone; we tell ourselves that there's some sort of plan for us all so that we don't feel like we're just floating, bouncing around, back and forth with no direction and no purpose until one day it's over and we stop.
Last night, I got the results from my most recent PET scan, taken last Friday. A lot of the trouble spots looked better. But for the first time since I began treatment, there were some new spots that hadn't been there before. And for the first time, I wasn't so sure about everything.
Given the hand I've been dealt, given the numbers and statistics, it was more likely than not that this would eventually happen. I knew that all along, but as long as everything was still going in the right direction, I kept it as far from my thoughts as possible.
It doesn't mean I'm pressing the panic button. It doesn't mean we have to sound the alarms. It means that what we've been doing hasn't been working as well as we'd hoped. It means we have to find something else that will work. It means we have to turn back around and start heading in the right direction once again.
I'm not scared of dying. I've said that before. And right now, at this point in time, that's not something I have to face. But as much as I want to be strong, to put on a smile, I am scared of not knowing. I'm scared of not knowing whether or not we can find something that will work. I'm scared of not knowing how long it will work until more trouble spots mysteriously appear.
My goal has been to beat this thing. I've wanted to get rid of it, put it in the past, and use it to help me become a better, stronger person. I realize now that I may never fully get past it. It may be a part of my life for as long as I'm still living. I never wanted to be going through treatment until my final days, but I realize now that I can handle the most brutal of treatments that they can come up with. I'll gladly go through treatment until my final breath, if it means managing my disease and keeping me alive.
I want to live until something else kills me. I don't care what it is, just not this.
It's just one test. There will be more tests. Plenty of them. They're just more doubts. There have always been doubts. There are more people to prove wrong. I still have time to do it.
I promised never to sugar-coat anything. I'm committed to telling it how it is; expressing things as they really are. Right now, they're not as good as they were before. It doesn't mean they can't get better again. In fact, I'm expecting them to. And I'll continue to tell my story, good and bad, the way it really is. You can expect the truth, whatever that means. That's a promise.
I figured, "Well, I'm the one who's sick, I'm the one who has to deal with all of this, so why shouldn't I exploit it for what it is?" Everybody loves a happy ending; everybody likes to feel uplifted; to believe in miracles. People just want to be inspired, right? I think we maintain faith in an almighty power in order to feel less alone; we tell ourselves that there's some sort of plan for us all so that we don't feel like we're just floating, bouncing around, back and forth with no direction and no purpose until one day it's over and we stop.
Last night, I got the results from my most recent PET scan, taken last Friday. A lot of the trouble spots looked better. But for the first time since I began treatment, there were some new spots that hadn't been there before. And for the first time, I wasn't so sure about everything.
Given the hand I've been dealt, given the numbers and statistics, it was more likely than not that this would eventually happen. I knew that all along, but as long as everything was still going in the right direction, I kept it as far from my thoughts as possible.
It doesn't mean I'm pressing the panic button. It doesn't mean we have to sound the alarms. It means that what we've been doing hasn't been working as well as we'd hoped. It means we have to find something else that will work. It means we have to turn back around and start heading in the right direction once again.
I'm not scared of dying. I've said that before. And right now, at this point in time, that's not something I have to face. But as much as I want to be strong, to put on a smile, I am scared of not knowing. I'm scared of not knowing whether or not we can find something that will work. I'm scared of not knowing how long it will work until more trouble spots mysteriously appear.
My goal has been to beat this thing. I've wanted to get rid of it, put it in the past, and use it to help me become a better, stronger person. I realize now that I may never fully get past it. It may be a part of my life for as long as I'm still living. I never wanted to be going through treatment until my final days, but I realize now that I can handle the most brutal of treatments that they can come up with. I'll gladly go through treatment until my final breath, if it means managing my disease and keeping me alive.
I want to live until something else kills me. I don't care what it is, just not this.
It's just one test. There will be more tests. Plenty of them. They're just more doubts. There have always been doubts. There are more people to prove wrong. I still have time to do it.
I promised never to sugar-coat anything. I'm committed to telling it how it is; expressing things as they really are. Right now, they're not as good as they were before. It doesn't mean they can't get better again. In fact, I'm expecting them to. And I'll continue to tell my story, good and bad, the way it really is. You can expect the truth, whatever that means. That's a promise.
Friday, August 6, 2010
"You could pick up a chick in an all-male prison." -To Remain Anonymous
"Who's that?" I asked, mesmerized by the pretty girl who had just walked into the room.
It was my last round of chemo, so I had accepted without much of a fight being put in a 4-bed room, even for five straight days.
"Oh, that's Laci, don't you know her?" responded my fun, friendly, amazingly wonderful caregiver, who certainly knows to whom I am referring.
"No, I don't think so," I said, still gazing at the doorway through which she had come before disappearing to the other side of the room and out of sight, yet through which she would once again have to pass in order to leave.
"She has a boyfriend," warned my informative friend.
"Oh, that's cool," I said, clearly trying to downplay my interest (i.e. play it cool). "I--I-- just thought she had a nice butt, that's all," I continued, immediately regretting my words as soon as I heard them leave my mouth. "Please don't say anything," I told my friend, trying to avoid the impending embarrassment.
I guess I should have known that my friend was about to go tell this Laci what I had said, anyway. I was fully prepared to face the consequences, and I have no problem telling a pretty girl when I think she's pretty. It's just that if I'm going to lead with a compliment, I try to come up with something more flattering than a comment on her butt. I like to at least offer the illusion that there lies some depth within me, beneath the bursting layers of charm and cynicism.
It wasn't until a later date that I learned of my ever-so-flattering comment reaching Laci's ears, and it came as a surprise to me when she told me herself that it had made her smile.
By this fourteenth round of chemo, I had developed somewhat of a nightly routine. First and foremost, being cooped up in a hospital room for five straight days, I liked to lighten the mood with some pain meds. I know, I know, it's a touchy subject for some, but then again so is cancer. I would then unplug my I.V. pole from the wall and drag it alongside me as I would begin to pace the hall indefinitely; my "nightly rounds."
If I were to have visitors, many times they might walk with me. On this night, my friendly caregiver was my walking buddy, and we did laps around the floor until she had to go fulfill her responsibilities to other patients.
Alone now, I noticed Laci sitting at one of the nurse's stations, and asked her if she would like to walk with me. As I expected, she told me she was busy, and I walked on by myself.
Hoping to be entertained, I began to treat the legs of the I.V. pole as a skateboard, pushing off the ground and jumping onto the legs of the pole to ride them down the hall. I kept myself amused for a while, until I pushed too hard and rolled too fast, losing the I.V. pole which almost ripped the line out of my chest as it went crashing to the floor.
"I'm alright," I announced, having maintained my balance and stayed on my feet, though nobody had seen my stunt.
Having flirted with danger long enough, I thought it was time to make my way back towards my room. Ironically, the only person I would find along the way was that same Laci.
"You didn't hear that, did you?" I asked, dreading her answer.
"Yes, I did," she said, clearly trying not to laugh. "It sounded kind of bad. Are you alright?"
"Yeah, I'm fine," I said. "Just trying to keep myself occupied."
"Well, just try not to get hurt. It is your last night tonight, isn't it?"
It wasn't long before I was sitting at the nurse's station with my friend and Laci, my new friend, having been formally introduced for the first time.
I had made it a habit to sit at the nurse's stations late at night, where they took their breaks, as I was comparable in age to many of them despite being treated on a pediatric ward. A night in the hospital can feel like an eternity with nobody to talk to, and I like to think, or at least tell myself, that those I would call my friends enjoyed my company as I did theirs.
"Do you want to hear some of my music?" I asked Laci.
"Sure," she said, "I just have to check up on my patients, first."
I walked back to my room with no expectations that the pretty nurse would ever show up at my hospital bed to hear my band's music about which she knew nothing. But, as luck would have it, she did appear before long, accompanied by another nurse I had not previously met.
I did my best to entertain them, play my music and make them laugh without being overly flirtatious and entirely obvious about my interests.
The night passed as did every other, and I was discharged the next day as I was at the end of every other round. I left as I always left, though this time with a little more fanfare, as I've already shared, and a smile for the girl who had made me smile, though unaccompanied by expectation.
I didn't know what to expect after the first contact, the first response, the first time I heard her voice outside the hospital. I knew that people like to say "good things happen when you least expect them," but I could never have expected anything to be this good.
I don't like to get my hopes up. I don't like to be let down. I don't like to build my expectations for many things other than myself. I like to think it's better that way when something, or someone, unexpectedly exceeds them.
I like when people surprise me. She surprised me. She hasn't stopped.
It was my last round of chemo, so I had accepted without much of a fight being put in a 4-bed room, even for five straight days.
"Oh, that's Laci, don't you know her?" responded my fun, friendly, amazingly wonderful caregiver, who certainly knows to whom I am referring.
"No, I don't think so," I said, still gazing at the doorway through which she had come before disappearing to the other side of the room and out of sight, yet through which she would once again have to pass in order to leave.
"She has a boyfriend," warned my informative friend.
"Oh, that's cool," I said, clearly trying to downplay my interest (i.e. play it cool). "I--I-- just thought she had a nice butt, that's all," I continued, immediately regretting my words as soon as I heard them leave my mouth. "Please don't say anything," I told my friend, trying to avoid the impending embarrassment.
I guess I should have known that my friend was about to go tell this Laci what I had said, anyway. I was fully prepared to face the consequences, and I have no problem telling a pretty girl when I think she's pretty. It's just that if I'm going to lead with a compliment, I try to come up with something more flattering than a comment on her butt. I like to at least offer the illusion that there lies some depth within me, beneath the bursting layers of charm and cynicism.
It wasn't until a later date that I learned of my ever-so-flattering comment reaching Laci's ears, and it came as a surprise to me when she told me herself that it had made her smile.
By this fourteenth round of chemo, I had developed somewhat of a nightly routine. First and foremost, being cooped up in a hospital room for five straight days, I liked to lighten the mood with some pain meds. I know, I know, it's a touchy subject for some, but then again so is cancer. I would then unplug my I.V. pole from the wall and drag it alongside me as I would begin to pace the hall indefinitely; my "nightly rounds."
If I were to have visitors, many times they might walk with me. On this night, my friendly caregiver was my walking buddy, and we did laps around the floor until she had to go fulfill her responsibilities to other patients.
Alone now, I noticed Laci sitting at one of the nurse's stations, and asked her if she would like to walk with me. As I expected, she told me she was busy, and I walked on by myself.
Hoping to be entertained, I began to treat the legs of the I.V. pole as a skateboard, pushing off the ground and jumping onto the legs of the pole to ride them down the hall. I kept myself amused for a while, until I pushed too hard and rolled too fast, losing the I.V. pole which almost ripped the line out of my chest as it went crashing to the floor.
"I'm alright," I announced, having maintained my balance and stayed on my feet, though nobody had seen my stunt.
Having flirted with danger long enough, I thought it was time to make my way back towards my room. Ironically, the only person I would find along the way was that same Laci.
"You didn't hear that, did you?" I asked, dreading her answer.
"Yes, I did," she said, clearly trying not to laugh. "It sounded kind of bad. Are you alright?"
"Yeah, I'm fine," I said. "Just trying to keep myself occupied."
"Well, just try not to get hurt. It is your last night tonight, isn't it?"
It wasn't long before I was sitting at the nurse's station with my friend and Laci, my new friend, having been formally introduced for the first time.
I had made it a habit to sit at the nurse's stations late at night, where they took their breaks, as I was comparable in age to many of them despite being treated on a pediatric ward. A night in the hospital can feel like an eternity with nobody to talk to, and I like to think, or at least tell myself, that those I would call my friends enjoyed my company as I did theirs.
"Do you want to hear some of my music?" I asked Laci.
"Sure," she said, "I just have to check up on my patients, first."
I walked back to my room with no expectations that the pretty nurse would ever show up at my hospital bed to hear my band's music about which she knew nothing. But, as luck would have it, she did appear before long, accompanied by another nurse I had not previously met.
I did my best to entertain them, play my music and make them laugh without being overly flirtatious and entirely obvious about my interests.
The night passed as did every other, and I was discharged the next day as I was at the end of every other round. I left as I always left, though this time with a little more fanfare, as I've already shared, and a smile for the girl who had made me smile, though unaccompanied by expectation.
I didn't know what to expect after the first contact, the first response, the first time I heard her voice outside the hospital. I knew that people like to say "good things happen when you least expect them," but I could never have expected anything to be this good.
I don't like to get my hopes up. I don't like to be let down. I don't like to build my expectations for many things other than myself. I like to think it's better that way when something, or someone, unexpectedly exceeds them.
I like when people surprise me. She surprised me. She hasn't stopped.
Monday, August 2, 2010
A Moment of Truth
My back hurts. My stomach hurts. My head hurts. I'm nauseous. I'm tired, and I don't want to feel this way anymore. But the thing about it that makes it all feel even worse is that I'm used to it. I can't remember the last day or time I felt anywhere close to what I would call normal. Sure, I feel more like myself now than I have at any point in the past year. My hair is back, sideburns and eyebrows included. I've shed the weight I put on in the places I didn't want it over those eight plus months of inactivity, and I'm slowly beginning to recognize the old form I so dearly valued in my shallow, unrelenting vanity.
I'm tired of people asking me "how I feel today," or if "today is a good day," though I know most of them ask because they care. I'm even more tired of telling them I'm "pretty good" or that I'm "alright" when the truth is that I feel awful, but I'd rather put on a happy face and tell them everything's okay. I hide my feelings from my family and from my friends, but mostly I just want to hide my pain. I really don't want anyone to try and share it with me. I have enough of it; I don't need to impart it on the people I care about, and that care about me, the way I probably am right now.
For so long, I eagerly awaited my chance to resume normal life; to loosen the reins that had become so suffocating. I ignored the impending responsibility and demands that accompany "real life," and all of a sudden I'm more afraid of going out and living than I am of the persistent uncertainty that I'll be around to do it.
I'm the first to acknowledge the constant uncertainty in our lives. Things are always changing, and I don't know how anyone can promise anything to anyone else when they can't guarantee tomorrow for themselves.
I hit ruts and rough patches; I think everyone does. I think maybe mine last longer than those of others because of cancer. A few months ago, I didn't think it was possible for me to be happy. A lot of the time, I'm not sure it is possible for me to be happy with the way things are right now. It's hard for me to accept that it's okay to feel that way.
People like to say that good things happen when you least expect them. Maybe they just like to maintain hope that something good might happen at any moment. I say it's a cliche. Then I realize that cliches are cliches because they hold true enough of the time for enough people to believe them in order to become cliches.
I will not believe that things happen for a reason. I will not budge on that point. But I will bend on the idea that good things happen when you least expect them. Maybe, for instance, on the last night of the last round of high dose chemo, when, on any normal occasion, I would not remember. And maybe by "good" I really mean "great," or "amazing." Maybe it's hard to let myself believe something like that could really be as great as it is, because this time it could actually be real. This time, it's not some impossible dream that I'll never touch. Now I dream while I'm awake.
I guess it's still hard for me to believe that someone could make me happy when I didn't think it was possible to be happy. I didn't know someone could know what I'm going through, see the question marks, and still want to love me. And though she can't heal my pain, or keep my stomach from gurgling like a water cooler, or keep me from falling into the occasional funk, she can remind me that everything will be alright just by existing in my life. I guess that's what people mean when they talk about the "healing power of love." That's if you believe cliches, of course.
When I hurt, she makes me hurt less. When I laugh, she makes me laugh harder. When I sleep, she helps me sleep better. When I can't get out of bed, she doesn't either. And by "can't" I really mean "don't want to," but I still mean she doesn't, either.
Before I got sick, I believed in the value of the journey as well as the destination. Since I was diagnosed, I've wished countless times that I could fall asleep and wake up when it's all over. I didn't care how I got there, I just wanted to be better. And, to a large extent, I still feel that way. But at least now I feel like part of the journey is worth being awake for.
I still have a long way to go. I have another round of low dose chemo before my next scan, and I'm not under the delusion that this will be the end. I don't like to get my hopes up. I know I'll reach the end of treatment, and I know that each passing day brings me closer to it. But I no longer feel like I'm in such a rush, and I once again feel like I can have everything there is to have in this life. I thought I had lost that. I've been reminded. I don't know what to call it... peace of mind, I guess.
I'm tired of people asking me "how I feel today," or if "today is a good day," though I know most of them ask because they care. I'm even more tired of telling them I'm "pretty good" or that I'm "alright" when the truth is that I feel awful, but I'd rather put on a happy face and tell them everything's okay. I hide my feelings from my family and from my friends, but mostly I just want to hide my pain. I really don't want anyone to try and share it with me. I have enough of it; I don't need to impart it on the people I care about, and that care about me, the way I probably am right now.
For so long, I eagerly awaited my chance to resume normal life; to loosen the reins that had become so suffocating. I ignored the impending responsibility and demands that accompany "real life," and all of a sudden I'm more afraid of going out and living than I am of the persistent uncertainty that I'll be around to do it.
I'm the first to acknowledge the constant uncertainty in our lives. Things are always changing, and I don't know how anyone can promise anything to anyone else when they can't guarantee tomorrow for themselves.
I hit ruts and rough patches; I think everyone does. I think maybe mine last longer than those of others because of cancer. A few months ago, I didn't think it was possible for me to be happy. A lot of the time, I'm not sure it is possible for me to be happy with the way things are right now. It's hard for me to accept that it's okay to feel that way.
People like to say that good things happen when you least expect them. Maybe they just like to maintain hope that something good might happen at any moment. I say it's a cliche. Then I realize that cliches are cliches because they hold true enough of the time for enough people to believe them in order to become cliches.
I will not believe that things happen for a reason. I will not budge on that point. But I will bend on the idea that good things happen when you least expect them. Maybe, for instance, on the last night of the last round of high dose chemo, when, on any normal occasion, I would not remember. And maybe by "good" I really mean "great," or "amazing." Maybe it's hard to let myself believe something like that could really be as great as it is, because this time it could actually be real. This time, it's not some impossible dream that I'll never touch. Now I dream while I'm awake.
I guess it's still hard for me to believe that someone could make me happy when I didn't think it was possible to be happy. I didn't know someone could know what I'm going through, see the question marks, and still want to love me. And though she can't heal my pain, or keep my stomach from gurgling like a water cooler, or keep me from falling into the occasional funk, she can remind me that everything will be alright just by existing in my life. I guess that's what people mean when they talk about the "healing power of love." That's if you believe cliches, of course.
When I hurt, she makes me hurt less. When I laugh, she makes me laugh harder. When I sleep, she helps me sleep better. When I can't get out of bed, she doesn't either. And by "can't" I really mean "don't want to," but I still mean she doesn't, either.
Before I got sick, I believed in the value of the journey as well as the destination. Since I was diagnosed, I've wished countless times that I could fall asleep and wake up when it's all over. I didn't care how I got there, I just wanted to be better. And, to a large extent, I still feel that way. But at least now I feel like part of the journey is worth being awake for.
I still have a long way to go. I have another round of low dose chemo before my next scan, and I'm not under the delusion that this will be the end. I don't like to get my hopes up. I know I'll reach the end of treatment, and I know that each passing day brings me closer to it. But I no longer feel like I'm in such a rush, and I once again feel like I can have everything there is to have in this life. I thought I had lost that. I've been reminded. I don't know what to call it... peace of mind, I guess.
Wednesday, July 21, 2010
The Last Few Months
Very early on in this process, I was at the National Cancer Institute in Bethesda, MD, undergoing what seemed like an interminable number of procedures to qualify me for their vaccine trial, which has, in the months since, seen good results in a number of delicate cases. Anyway, while I was there, one of the doctors, in talking to me and my family about my road to recovery, should it even exist, said, "it's not a sprint, it's a marathon."
Over the past few months, those words have come and gone countless times through my mind. The thought usually evokes one of two responses, as I will explain. In either case, I expect to somehow reach the end of my life, preferably an end of old age. So, on the one hand, when I reach the end of my life as an old man, I think of this experience as having been a marathon rather than a sprint. And I can't help but feel uneasy about the prospect of someday reaching the waning years of my life and thinking to myself, "I knew it was going to be a marathon, but I made it!"
I know I've said it before, but running still feels to me like a form of punishment, instilled by years of angry coaches telling me to "get on the line!" followed by the number of seconds that would appear and then vanish from the game clock on the wall, before which the team had to finish the ensuing sprint or else have to run again.
So I think to myself how I don't want simply getting through life to feel like running a marathon, so I can reach the finish line and think, "Oh man, that was rough, thank goodness it's finally over." I mean, that's the biggest reason why I could never see myself running a marathon in the first place. Do I really want to look at my life that way? Get to the end and think, "at least I made it"?
I keep telling myself that this experience will not last forever and will not always define my life and who I am as a person, though it has changed the person I am and will no doubt influence the person I am to become. So the other response I have to the notion of the marathon is that a marathon can be measured. 26.2 miles, in fact, is all that constitutes the length of a marathon. And by no means am I trying to diminish the accomplishment or feat that is running a marathon. It is obviously one of the greatest challenges to overcome and one of the most demanding to achieve of things we know. Its tradition is meant to honor the first man to ever run such a distance, at the end of which he dropped dead. So I can imagine the immense satisfaction one might feel at the completion of a marathon, but as I said, I have little to no intention of ever running one. I just don't see realistically how I would enjoy the experience.
I last wrote while in the midst of seven weeks of radiation on my shoulders. While radiation did not make me sick in the same way as did the chemo before it, I still found it rather unpleasant to wake up in the morning to see blood on my sheets coming from the severe burns on my arms that had turned my skin into crocodile leather.
Shortly after radiation ended, I began a regimen of low-dose chemotherapy with the intent to keep going after the disease while affording me more time and freedom to live my life than I had during the first 14 rounds of hell. And while nothing will likely compare to those first 14 rounds, the new low dose regimen started out with a blast.
Round 1 (or round 15, whichever way you prefer to look at it), was the maximum dose allowable, some of it in pills and some more I.V. drugs. Thus began three straight weeks of nausea, vomiting, diarrhea, stomach pains, headaches and the like, different from but comparable in many ways to the heavy chemo from which I had just graduated. I'm actually pretty sure I threw up more times from that first round of low dose chemo than I did through fourteen rounds of the rough stuff.
Fortunately, each round since the first round of low dose has been progressively easier, and I can say that now, currently being halfway through round 5 (or 19, if you will), as I keep my mind occupied so as not to dwell on the partially alleviated nausea, stomach pain, and diarrhea.
People ask me all the time how much longer I will have to do this, and by "this" I assume they mean the low dose chemo because most people don't know that the low dose is only to get me to where my level of recurring disease is low enough for me to qualify to receive the vaccine down at NCI; the vaccine that was made for me a year ago when the nightmare from which I am still not yet fully awake began. So I tell these people what I tell you now, that the most frustrating thing about it is that I don't really know how much longer I will have to do this.
And that's where the marathon idea comes back into play. A marathon has a starting line and a finish line. The idea of its length and difficulty applies here, I get that, but it frustrates me to think that I could be doing this low dose chemo every third week for years, and we would still be taking a "one round at a time" approach. The goal of all this treatment is for me to reach remission, and I'm glad that the goal is still the same. But when people ask, they seem to expect some kind of magical end date. And when I don't have one to give them, it frustrates me all over again.
Even marathons have a finish line.
After the third round of low dose chemo, I had another PET Scan that showed things moving in the right direction. Tumor levels are diminishing, and we could not have hoped for better results. But when the doctor told me to be happy and to celebrate, it was hard for me to take the good news as just that. Sure, it was good news and meant good things for the future, but my next thought after relief is the indefinite number of rounds I have yet to endure before I can even reach the next leg of this journey. Nobody knows when this portion will end, and after that I will still have the vaccines and regular tests and checkups to see if and how well the vaccines actually worked, and I'll still have to wonder if and when the disease will come back, not to mention that in order to even be asking these questions, so many things need to keep going right.
My family and friends often remind me of how strong and positive I've been through all of this. Sure, there are times when I look in the mirror, usually after I throw up or feel the worst I think I can possibly feel, and I think of myself as invincible; like nothing in this world can break me. But there are plenty more times when I feel helpless and my positive attitude and approach to these things leaves me just as quickly as did the meager breakfast I was hoping to keep down that day.
I know I can't be happy all the time. I know nobody can, even the large majority of people who don't have to deal with the things I endure on a daily basis. I want to think of myself as a happy person, nonetheless, and I want to bring joy to others.
I guess over the past few months I've realized that being a role model to others doesn't mean painting the prettiest picture possible from every situation that arises. Sometimes, things just need to be the way they are. Shitty things are shitty. There's no way around that. Shitty days will be shitty days. But if we can continue to see the big picture of things, keep our sights on the results we wish to achieve and the destination we wish to reach, then rough days and rough times may just pose the inevitable bump in the road that keeps us grounded. These days and difficulties may force us to strengthen ourselves as individuals to be better suited to attain that big picture and to one day reach our goals and dreams.
Taking this experience one day at a time never gets any easier. Wanting the freedom I once had and waiting for treatment to allow me to regain it never gets any easier. But the fight gets easier as I get stronger, and the future, though still scary, gets brighter as I continue to grow as a person, a friend, and a survivor.
Over the past few months, those words have come and gone countless times through my mind. The thought usually evokes one of two responses, as I will explain. In either case, I expect to somehow reach the end of my life, preferably an end of old age. So, on the one hand, when I reach the end of my life as an old man, I think of this experience as having been a marathon rather than a sprint. And I can't help but feel uneasy about the prospect of someday reaching the waning years of my life and thinking to myself, "I knew it was going to be a marathon, but I made it!"
I know I've said it before, but running still feels to me like a form of punishment, instilled by years of angry coaches telling me to "get on the line!" followed by the number of seconds that would appear and then vanish from the game clock on the wall, before which the team had to finish the ensuing sprint or else have to run again.
So I think to myself how I don't want simply getting through life to feel like running a marathon, so I can reach the finish line and think, "Oh man, that was rough, thank goodness it's finally over." I mean, that's the biggest reason why I could never see myself running a marathon in the first place. Do I really want to look at my life that way? Get to the end and think, "at least I made it"?
I keep telling myself that this experience will not last forever and will not always define my life and who I am as a person, though it has changed the person I am and will no doubt influence the person I am to become. So the other response I have to the notion of the marathon is that a marathon can be measured. 26.2 miles, in fact, is all that constitutes the length of a marathon. And by no means am I trying to diminish the accomplishment or feat that is running a marathon. It is obviously one of the greatest challenges to overcome and one of the most demanding to achieve of things we know. Its tradition is meant to honor the first man to ever run such a distance, at the end of which he dropped dead. So I can imagine the immense satisfaction one might feel at the completion of a marathon, but as I said, I have little to no intention of ever running one. I just don't see realistically how I would enjoy the experience.
I last wrote while in the midst of seven weeks of radiation on my shoulders. While radiation did not make me sick in the same way as did the chemo before it, I still found it rather unpleasant to wake up in the morning to see blood on my sheets coming from the severe burns on my arms that had turned my skin into crocodile leather.
Shortly after radiation ended, I began a regimen of low-dose chemotherapy with the intent to keep going after the disease while affording me more time and freedom to live my life than I had during the first 14 rounds of hell. And while nothing will likely compare to those first 14 rounds, the new low dose regimen started out with a blast.
Round 1 (or round 15, whichever way you prefer to look at it), was the maximum dose allowable, some of it in pills and some more I.V. drugs. Thus began three straight weeks of nausea, vomiting, diarrhea, stomach pains, headaches and the like, different from but comparable in many ways to the heavy chemo from which I had just graduated. I'm actually pretty sure I threw up more times from that first round of low dose chemo than I did through fourteen rounds of the rough stuff.
Fortunately, each round since the first round of low dose has been progressively easier, and I can say that now, currently being halfway through round 5 (or 19, if you will), as I keep my mind occupied so as not to dwell on the partially alleviated nausea, stomach pain, and diarrhea.
People ask me all the time how much longer I will have to do this, and by "this" I assume they mean the low dose chemo because most people don't know that the low dose is only to get me to where my level of recurring disease is low enough for me to qualify to receive the vaccine down at NCI; the vaccine that was made for me a year ago when the nightmare from which I am still not yet fully awake began. So I tell these people what I tell you now, that the most frustrating thing about it is that I don't really know how much longer I will have to do this.
And that's where the marathon idea comes back into play. A marathon has a starting line and a finish line. The idea of its length and difficulty applies here, I get that, but it frustrates me to think that I could be doing this low dose chemo every third week for years, and we would still be taking a "one round at a time" approach. The goal of all this treatment is for me to reach remission, and I'm glad that the goal is still the same. But when people ask, they seem to expect some kind of magical end date. And when I don't have one to give them, it frustrates me all over again.
Even marathons have a finish line.
After the third round of low dose chemo, I had another PET Scan that showed things moving in the right direction. Tumor levels are diminishing, and we could not have hoped for better results. But when the doctor told me to be happy and to celebrate, it was hard for me to take the good news as just that. Sure, it was good news and meant good things for the future, but my next thought after relief is the indefinite number of rounds I have yet to endure before I can even reach the next leg of this journey. Nobody knows when this portion will end, and after that I will still have the vaccines and regular tests and checkups to see if and how well the vaccines actually worked, and I'll still have to wonder if and when the disease will come back, not to mention that in order to even be asking these questions, so many things need to keep going right.
My family and friends often remind me of how strong and positive I've been through all of this. Sure, there are times when I look in the mirror, usually after I throw up or feel the worst I think I can possibly feel, and I think of myself as invincible; like nothing in this world can break me. But there are plenty more times when I feel helpless and my positive attitude and approach to these things leaves me just as quickly as did the meager breakfast I was hoping to keep down that day.
I know I can't be happy all the time. I know nobody can, even the large majority of people who don't have to deal with the things I endure on a daily basis. I want to think of myself as a happy person, nonetheless, and I want to bring joy to others.
I guess over the past few months I've realized that being a role model to others doesn't mean painting the prettiest picture possible from every situation that arises. Sometimes, things just need to be the way they are. Shitty things are shitty. There's no way around that. Shitty days will be shitty days. But if we can continue to see the big picture of things, keep our sights on the results we wish to achieve and the destination we wish to reach, then rough days and rough times may just pose the inevitable bump in the road that keeps us grounded. These days and difficulties may force us to strengthen ourselves as individuals to be better suited to attain that big picture and to one day reach our goals and dreams.
Taking this experience one day at a time never gets any easier. Wanting the freedom I once had and waiting for treatment to allow me to regain it never gets any easier. But the fight gets easier as I get stronger, and the future, though still scary, gets brighter as I continue to grow as a person, a friend, and a survivor.
Thursday, March 11, 2010
Sleep
I thought that maybe as I further distanced myself from chemo, it would get progressively easier to come back and begin writing more about this new phase of the experience and the new things I'm going through. As I pushed closer and closer to the end of chemo, it was becoming harder to find the right things to say, as well as the energy and motivation to put them onto the page in front of me. I wanted to write, but I felt I had less to share, and it just hasn't gotten any easier.
Maybe it's this unquestioning need I feel to put all of this in the past as fast as possible that makes it difficult to keep coming back to it and diving deeper into its depths by exploring it from so many different angles. Maybe I'm just enjoying being able to get outside and do some of the things I couldn't before, and surely that isn't a bad thing. I feel more like my normal self now than I have in such a long time, it makes me wonder how I went so long without me. I'm still figuring out how to cope with the phantoms in my head that don't seem to want to go away, but I'm okay with having some reminders as long as they don't keep me from being in a positive place. And I still have nightmares a few times a week, where something or someone is desperately trying to kill me, but now when I wake up I can usually fall back asleep, something I couldn't do before.
That's probably made the biggest difference to me since having this extended recovery time. When my body feels good, it's so much easier to fall asleep. And when I can sleep, it makes my body and mind feel so much more refreshed, which in turn makes it easier to fall asleep again the next time. If you know me well, you know that I love and cherish my sleep. I like staying up late, I don't like waking up early, and I don't like alarm clocks, not that I know anyone who does. At the end of the day, I'll take more sleep and a few nightmares over less sleep and a lot of nightmares in a heartbeat.
I still have blood work done once a week. Yesterday I had another Bone Marrow Biopsy, which, I believe, puts my total somewhere in the teens. Tomorrow brings another PET Scan, and next week we confront the decision regarding whether or not to begin low-dose chemo in addition to radiation, or to hold off on it in favor of the vaccines that would begin shortly after radiation ends in a few weeks. So even though radiation is far less severe than was chemo, I'm still constantly reminded of where I am and where I'm trying to go. I'm still taking things one day at a time, and telling myself to appreciate even the little things as I and different aspects of my life continue to get better. The ups and downs remain, as I'm sure they always will, but it is most definitely getting easier to sleep at night.
Maybe it's this unquestioning need I feel to put all of this in the past as fast as possible that makes it difficult to keep coming back to it and diving deeper into its depths by exploring it from so many different angles. Maybe I'm just enjoying being able to get outside and do some of the things I couldn't before, and surely that isn't a bad thing. I feel more like my normal self now than I have in such a long time, it makes me wonder how I went so long without me. I'm still figuring out how to cope with the phantoms in my head that don't seem to want to go away, but I'm okay with having some reminders as long as they don't keep me from being in a positive place. And I still have nightmares a few times a week, where something or someone is desperately trying to kill me, but now when I wake up I can usually fall back asleep, something I couldn't do before.
That's probably made the biggest difference to me since having this extended recovery time. When my body feels good, it's so much easier to fall asleep. And when I can sleep, it makes my body and mind feel so much more refreshed, which in turn makes it easier to fall asleep again the next time. If you know me well, you know that I love and cherish my sleep. I like staying up late, I don't like waking up early, and I don't like alarm clocks, not that I know anyone who does. At the end of the day, I'll take more sleep and a few nightmares over less sleep and a lot of nightmares in a heartbeat.
I still have blood work done once a week. Yesterday I had another Bone Marrow Biopsy, which, I believe, puts my total somewhere in the teens. Tomorrow brings another PET Scan, and next week we confront the decision regarding whether or not to begin low-dose chemo in addition to radiation, or to hold off on it in favor of the vaccines that would begin shortly after radiation ends in a few weeks. So even though radiation is far less severe than was chemo, I'm still constantly reminded of where I am and where I'm trying to go. I'm still taking things one day at a time, and telling myself to appreciate even the little things as I and different aspects of my life continue to get better. The ups and downs remain, as I'm sure they always will, but it is most definitely getting easier to sleep at night.
Wednesday, February 24, 2010
Fourteen
Chemo ended without a whole lot of fanfare. There was some confetti thrown, maybe a lot of confetti, but minimal fanfare. I'm actually happy I wasn't the one who had to clean up all of the confetti, but I thought given the circumstances I deserved to toss some paper into the air without regard to its sweeping.
Round fourteen brought with it the familiar aftershock that I was anticipating, but as expected I'm beginning to crawl back out of the tunnel and into the daylight. I'll admit that this time, even though it was a 5-day and when I finally got home I felt as if I had been hit by a truck, it wasn't quite like the thirteen rounds preceding it. I was aware that I had finally reached the end, and my adrenaline really carried me through. Over the past few days, I've revisited a lot of the journey in my mind, at least what I haven't blanked out, and it seems that exploring my memory will always be an unpredictably emotional ride.
Fourteen was always my number in basketball. I wore it ever since my dad told me about Oscar Robertson, the "Big O," and the way he forever changed the landscape of the game. Now, that number is forever changed for me. I still have tons of shirts and sweats, assorted gear with fourteen embroidered onto them, but I'm no longer able to think about one without the other. I have a bookcase littered with trophies and plaques from leagues, camps, and competitions, but they don't make certificates or medals for this. I have scars and cobwebs draped across lesions where pieces of my brain used to be, and apparently I've been left with an exaggerated flair for the dramatic.
Fourteen suddenly carries with it a lot more baggage than should a beacon of one's youth, a first love that taught me about dedication and hard work, and so many of the things that got me through fourteen rounds of chemo. I guess it's sort of fitting that it worked out that way, though I'd prefer to associate the things I love with joy rather than resentment. I'm hoping that over time, I'll learn to better appreciate this latest experience, since time is inevitably the eternal healer.
Just as quickly as chemo ended, radiation began. I like it that way, though, one thing right after the other. I don't need a whole lot of time to sit and reflect on the toxic wonder that is chemotherapy. From what I remember, it will be pretty hard to forget.
Round fourteen brought with it the familiar aftershock that I was anticipating, but as expected I'm beginning to crawl back out of the tunnel and into the daylight. I'll admit that this time, even though it was a 5-day and when I finally got home I felt as if I had been hit by a truck, it wasn't quite like the thirteen rounds preceding it. I was aware that I had finally reached the end, and my adrenaline really carried me through. Over the past few days, I've revisited a lot of the journey in my mind, at least what I haven't blanked out, and it seems that exploring my memory will always be an unpredictably emotional ride.
Fourteen was always my number in basketball. I wore it ever since my dad told me about Oscar Robertson, the "Big O," and the way he forever changed the landscape of the game. Now, that number is forever changed for me. I still have tons of shirts and sweats, assorted gear with fourteen embroidered onto them, but I'm no longer able to think about one without the other. I have a bookcase littered with trophies and plaques from leagues, camps, and competitions, but they don't make certificates or medals for this. I have scars and cobwebs draped across lesions where pieces of my brain used to be, and apparently I've been left with an exaggerated flair for the dramatic.
Fourteen suddenly carries with it a lot more baggage than should a beacon of one's youth, a first love that taught me about dedication and hard work, and so many of the things that got me through fourteen rounds of chemo. I guess it's sort of fitting that it worked out that way, though I'd prefer to associate the things I love with joy rather than resentment. I'm hoping that over time, I'll learn to better appreciate this latest experience, since time is inevitably the eternal healer.
Just as quickly as chemo ended, radiation began. I like it that way, though, one thing right after the other. I don't need a whole lot of time to sit and reflect on the toxic wonder that is chemotherapy. From what I remember, it will be pretty hard to forget.
Saturday, February 13, 2010
On Second Thought...
On second thought, the doctors found too many potential risks to radiating all of the remaining tumor spots. While I'm a little disappointed, I'm actually kind of relieved. There are so many dangers associated with radiation, it will be good to spare my brain, heart, lungs, liver, and every other organ that would have felt the burn, even if it means lengthening the road to remission.
I'm still looking at 31 days of radiation on my arms, starting pretty much immediately after my last chemo. I don't know what it means that the other tumor spots aren't going to be targeted, but it gives my bones some extra time to heal, so when radiation is finished and we do some more scans, it will probably leave us with a more accurate picture of what's really left. I'm slightly concerned that the rest will allow the tumor to recover and start growing again, but after fourteen rounds of chemo it has to be tired like me, right? And if it does start to spread again, we'll go after it. But hopefully my daily coaxing and pleading has convinced the beast to stay down.
When I think about it, a lot has changed over the past few months. First and foremost, the tumor has continued to respond to chemo. We compared the scan from October with the scan from last week, and the improvement is really kind of remarkable. I always feel like I'm going to jinx it when I say things like that, but it's true.
I kicked the morphine I was on a while ago, despite having started with an unruly dosage. I go out with my friends on occasion, though it's hard sometimes to resist indulging my temptations and urges to misbehave. At this point, though, I've stayed on track for so long, it just doesn't make sense to give in now. I also think I've regained a lot of the self-control I felt like I had lost before. Most of the time, I still don't feel like this is my normal body, but at least I no longer hallucinate, wake up in the middle of the night to urinate in the garbage can, or wait for a small miracle every time I want to get turned on. I'm two or so weeks away from sushi, and even though I know the misery that awaits me those first few days, after this next round of chemo my body will simply continue to improve. I won't get better to a point and then have to drag myself back and do it all over again. That also means I should have hair before too long, and I've begun to grow tired of seeing the light shining off my head when I look in the mirror.
My doctor reminds me that any way I look at it, I'm going to have a long-term relationship with medicine. But hey, all things considered, that's a lot better than not having any relationship with it at all. At least it means I'm going to be around for a little while longer. I'm looking at a much easier time without chemo, and I figure that as long as I keep heading in the direction I'm already going, my situation can't get worse. I already try to take things as they come, on a daily basis, and the only expectations I plan to build are of myself and the things I want to accomplish.
A long time ago, I said it's hard to find progress in stability due to a general inability to be patient. But now, at least for me, I think stability means I've made a lot of progress. Stability means I can keep looking ahead with confidence, knowing with at least some certainty that there's going to be another day to fight.
I'm still looking at 31 days of radiation on my arms, starting pretty much immediately after my last chemo. I don't know what it means that the other tumor spots aren't going to be targeted, but it gives my bones some extra time to heal, so when radiation is finished and we do some more scans, it will probably leave us with a more accurate picture of what's really left. I'm slightly concerned that the rest will allow the tumor to recover and start growing again, but after fourteen rounds of chemo it has to be tired like me, right? And if it does start to spread again, we'll go after it. But hopefully my daily coaxing and pleading has convinced the beast to stay down.
When I think about it, a lot has changed over the past few months. First and foremost, the tumor has continued to respond to chemo. We compared the scan from October with the scan from last week, and the improvement is really kind of remarkable. I always feel like I'm going to jinx it when I say things like that, but it's true.
I kicked the morphine I was on a while ago, despite having started with an unruly dosage. I go out with my friends on occasion, though it's hard sometimes to resist indulging my temptations and urges to misbehave. At this point, though, I've stayed on track for so long, it just doesn't make sense to give in now. I also think I've regained a lot of the self-control I felt like I had lost before. Most of the time, I still don't feel like this is my normal body, but at least I no longer hallucinate, wake up in the middle of the night to urinate in the garbage can, or wait for a small miracle every time I want to get turned on. I'm two or so weeks away from sushi, and even though I know the misery that awaits me those first few days, after this next round of chemo my body will simply continue to improve. I won't get better to a point and then have to drag myself back and do it all over again. That also means I should have hair before too long, and I've begun to grow tired of seeing the light shining off my head when I look in the mirror.
My doctor reminds me that any way I look at it, I'm going to have a long-term relationship with medicine. But hey, all things considered, that's a lot better than not having any relationship with it at all. At least it means I'm going to be around for a little while longer. I'm looking at a much easier time without chemo, and I figure that as long as I keep heading in the direction I'm already going, my situation can't get worse. I already try to take things as they come, on a daily basis, and the only expectations I plan to build are of myself and the things I want to accomplish.
A long time ago, I said it's hard to find progress in stability due to a general inability to be patient. But now, at least for me, I think stability means I've made a lot of progress. Stability means I can keep looking ahead with confidence, knowing with at least some certainty that there's going to be another day to fight.
Sunday, February 7, 2010
The Next Step
As long as they let me in a week from Wednesday, then two weeks from today will mark the fifth day of the fourteenth round of chemo. That's the last scheduled day of chemotherapy. It's exciting. Maybe it's just been going on for so long, or maybe I know there's more to come, but for whatever reason it just doesn't really feel like anything is ending.
The radiation oncologist told me before I left the thirteenth round that they will likely be able to treat all of the remaining tumor spots with radiation. She said it would happen over six weeks, five days a week, which might grow tiresome, but I'm not worried about it. She also told me that radiation may slightly heighten my chances of acquiring a sarcoma twenty or so years down the line, but if it does happen, the tumor will likely respond to radiation. It's ironic, I know, and I'd like to give her the benefit of the doubt and believe that she actually did read my chart or learn my background or whatever before she started telling me all of this, because, wait, oh yes, I already have a sarcoma! And the point of radiation is to kill this one so that it doesn't kill me in, say, a year or two. Bottom line, I'll take my chances twenty years from now.
I guess that overall it's good news. I was hoping they'd be able to radiate all of the remaining spots, so now six weeks of radiation just becomes another milestone. I know I said it doesn't feel like a whole lot is changing, and maybe that's because I'm looking primarily at the big picture, but it's definitely important to appreciate every accomplishment for its own worth. Enduring each round of chemo has felt like an accomplishment, and it's something that nobody can ever take away from me. And that's worth something, I know, I'm just having trouble finding the joy in it just yet.
For some reason, I'm finding it hard to appreciate the journey because I'm so focused on the end result. Maybe "appreciate" isn't the most appropriate term, since there hasn't been much fun involved, but it's still odd to me that the anticipation of finishing chemo hasn't infused me with renewed energy. Maybe thirteen rounds have taken a toll and I'm hitting some kind of wall, but I refuse to accept that.
It has to be up to me; that's the only thing that makes sense. I can still set my sights on the finish line, while reveling in the good days and the progress I've made so far, because the truth of the matter is that none of the doctors knew at the beginning that I'd be where I am right now. I've been told that years from now, this may all seem like a distant memory, but I don't buy it. I don't think I'll ever be able to truly distance myself from this experience, partly because of the fact that it could become a reality again at any moment. I think it could be a blessing in disguise, always reminding me to treat each day, each moment as a gift.
It's the journey that makes the destination so much greater, right? Well, I think in the case of beating cancer the destination is the reward, and the journey, for the most part, sucks. But that doesn't mean I should stop celebrating the things that merit celebration, no matter how small they might be. There will always be obstacles to overcome, but when we conquer one we don't actively search for the next, we pat ourselves on the back, deservedly, for a job well done. And that's the way it should be. It's worth it to take each opportunity to be excited; it's a lot easier to tell when we've done something good than it is to predict what's going to happen next. I'd rather be excited than apprehensive, because whatever's going to happen next is going to happen either way.
The radiation oncologist told me before I left the thirteenth round that they will likely be able to treat all of the remaining tumor spots with radiation. She said it would happen over six weeks, five days a week, which might grow tiresome, but I'm not worried about it. She also told me that radiation may slightly heighten my chances of acquiring a sarcoma twenty or so years down the line, but if it does happen, the tumor will likely respond to radiation. It's ironic, I know, and I'd like to give her the benefit of the doubt and believe that she actually did read my chart or learn my background or whatever before she started telling me all of this, because, wait, oh yes, I already have a sarcoma! And the point of radiation is to kill this one so that it doesn't kill me in, say, a year or two. Bottom line, I'll take my chances twenty years from now.
I guess that overall it's good news. I was hoping they'd be able to radiate all of the remaining spots, so now six weeks of radiation just becomes another milestone. I know I said it doesn't feel like a whole lot is changing, and maybe that's because I'm looking primarily at the big picture, but it's definitely important to appreciate every accomplishment for its own worth. Enduring each round of chemo has felt like an accomplishment, and it's something that nobody can ever take away from me. And that's worth something, I know, I'm just having trouble finding the joy in it just yet.
For some reason, I'm finding it hard to appreciate the journey because I'm so focused on the end result. Maybe "appreciate" isn't the most appropriate term, since there hasn't been much fun involved, but it's still odd to me that the anticipation of finishing chemo hasn't infused me with renewed energy. Maybe thirteen rounds have taken a toll and I'm hitting some kind of wall, but I refuse to accept that.
It has to be up to me; that's the only thing that makes sense. I can still set my sights on the finish line, while reveling in the good days and the progress I've made so far, because the truth of the matter is that none of the doctors knew at the beginning that I'd be where I am right now. I've been told that years from now, this may all seem like a distant memory, but I don't buy it. I don't think I'll ever be able to truly distance myself from this experience, partly because of the fact that it could become a reality again at any moment. I think it could be a blessing in disguise, always reminding me to treat each day, each moment as a gift.
It's the journey that makes the destination so much greater, right? Well, I think in the case of beating cancer the destination is the reward, and the journey, for the most part, sucks. But that doesn't mean I should stop celebrating the things that merit celebration, no matter how small they might be. There will always be obstacles to overcome, but when we conquer one we don't actively search for the next, we pat ourselves on the back, deservedly, for a job well done. And that's the way it should be. It's worth it to take each opportunity to be excited; it's a lot easier to tell when we've done something good than it is to predict what's going to happen next. I'd rather be excited than apprehensive, because whatever's going to happen next is going to happen either way.
Monday, February 1, 2010
The Right Direction
I had a bone scan on Friday since my last tests were done three months ago, and it was a good time to see how much progress has been made over the last seven rounds of chemo. With only two scheduled rounds remaining, the doctors want to make a plan of attack from here on out. In order to do that, they need a point of reference; an illustration of where we stand right now.
I was really nervous about the scan, since it pretty much dictates the rest of my treatment. The options appear to be radiation, which is only really an option if there isn't much tumor left, and the remains are located in few enough places on my body. If the tumor shows up in too many places, the option would likely be to continue with lower dosage chemo for however long it takes to be rid of the tumor completely. Either way, I'll be going back to Bethesda for the vaccinations, but the other question that arises is whether or not to undergo a stem cell transplant. It could be helpful, but it would require putting my body through hell (that's not to say that chemo hasn't been hell all along, but this would mean extra miserable, possibly dangerous hell). People actually die from those procedures, and I'm in a really difficult position having to make the final decision regarding whether or not to do it.
Fortunately, the results of the bone scan were good. The tumor is gone from my spine and shoulders, and it only persists in my arms, sternum, pelvis, and skull. It was less intense in all of these places than it was three months ago, so it's reasonable to conclude that the chemo is working. The doctor also told me that bone scans show the abnormal things going on in the bones, like a tumor, as well as bone restructuring, or healing. It could be that the tumor is even smaller than the scan showed, but that my bones are healing in those places so they showed up as abnormal. I want to believe that this is the case in my pelvis, at least somewhat, considering how many pieces of bone have been broken off during Bone Marrow Biopsies. There's just no way that the bone isn't still recovering from that.
So the good news is that I'm heading in the right direction. The scary part is that we have to make some decisions about what to do next, since I can't keep going to chemo forever. (I actually consider that a good thing; I don't know how much longer I could take it, but the bottom line is that it appears to be working.) The reality remains that this type of tumor usually returns, so not only do we have to eliminate it, but we have to do what it takes to give me the best shot at keeping it from coming back.
It would be easy, and reasonable, for that matter, to constantly be in fear. I have to decide whether or not to undergo a procedure that could save me just as soon as kill me, and said procedure, among other treatments, would be performed in order to help me survive a tumor which most people who get it don't survive. If they manage to survive it the first time, it usually comes back to finish the job. Yes, I would say I have defensible reason to be afraid.
My doctor told me today that she would never bet against me, and it really meant a lot to me. She says she's never seen anyone go through chemo at the pace I've (for the most part) been able to maintain. I pride myself in my ability to bounce back. I just think that's the way you have to be if you're going to beat something like this. You just have to believe that nothing can keep you from winning, and nothing can stand in the way of you attaining the things you want. You obviously need to factor in some luck (like the treatment actually working, without which I wouldn't have a prayer) but so much of it depends on you. And it's not just cancer, or chemo, or whatever, I'm pretty sure it's true of anything. You're not going to get where you want to go if you don't truly believe you're going to be there in the end.
Fear can do nothing but stand in my way. I'll beat this thing before it kills me, and if it comes back, I'll beat it again. It's comforting to know that my doctor is behind me and that she believes in me, but I wouldn't bet against me either, and I think that's important, too. There's always a chance that I'm wrong; that truth has been there all along, and I'm aware of it. In actuality, it's a reality that exists. Not to me, though. In my mind, there has only ever been one option.
I was really nervous about the scan, since it pretty much dictates the rest of my treatment. The options appear to be radiation, which is only really an option if there isn't much tumor left, and the remains are located in few enough places on my body. If the tumor shows up in too many places, the option would likely be to continue with lower dosage chemo for however long it takes to be rid of the tumor completely. Either way, I'll be going back to Bethesda for the vaccinations, but the other question that arises is whether or not to undergo a stem cell transplant. It could be helpful, but it would require putting my body through hell (that's not to say that chemo hasn't been hell all along, but this would mean extra miserable, possibly dangerous hell). People actually die from those procedures, and I'm in a really difficult position having to make the final decision regarding whether or not to do it.
Fortunately, the results of the bone scan were good. The tumor is gone from my spine and shoulders, and it only persists in my arms, sternum, pelvis, and skull. It was less intense in all of these places than it was three months ago, so it's reasonable to conclude that the chemo is working. The doctor also told me that bone scans show the abnormal things going on in the bones, like a tumor, as well as bone restructuring, or healing. It could be that the tumor is even smaller than the scan showed, but that my bones are healing in those places so they showed up as abnormal. I want to believe that this is the case in my pelvis, at least somewhat, considering how many pieces of bone have been broken off during Bone Marrow Biopsies. There's just no way that the bone isn't still recovering from that.
So the good news is that I'm heading in the right direction. The scary part is that we have to make some decisions about what to do next, since I can't keep going to chemo forever. (I actually consider that a good thing; I don't know how much longer I could take it, but the bottom line is that it appears to be working.) The reality remains that this type of tumor usually returns, so not only do we have to eliminate it, but we have to do what it takes to give me the best shot at keeping it from coming back.
It would be easy, and reasonable, for that matter, to constantly be in fear. I have to decide whether or not to undergo a procedure that could save me just as soon as kill me, and said procedure, among other treatments, would be performed in order to help me survive a tumor which most people who get it don't survive. If they manage to survive it the first time, it usually comes back to finish the job. Yes, I would say I have defensible reason to be afraid.
My doctor told me today that she would never bet against me, and it really meant a lot to me. She says she's never seen anyone go through chemo at the pace I've (for the most part) been able to maintain. I pride myself in my ability to bounce back. I just think that's the way you have to be if you're going to beat something like this. You just have to believe that nothing can keep you from winning, and nothing can stand in the way of you attaining the things you want. You obviously need to factor in some luck (like the treatment actually working, without which I wouldn't have a prayer) but so much of it depends on you. And it's not just cancer, or chemo, or whatever, I'm pretty sure it's true of anything. You're not going to get where you want to go if you don't truly believe you're going to be there in the end.
Fear can do nothing but stand in my way. I'll beat this thing before it kills me, and if it comes back, I'll beat it again. It's comforting to know that my doctor is behind me and that she believes in me, but I wouldn't bet against me either, and I think that's important, too. There's always a chance that I'm wrong; that truth has been there all along, and I'm aware of it. In actuality, it's a reality that exists. Not to me, though. In my mind, there has only ever been one option.
Monday, January 25, 2010
Soggy
Every summer during high school, one of my best friends and I would go to weeklong sleep-away basketball camp. It was a good way to get recruited by college coaches while having the opportunity to get away from home and be on our own for a few days.
The first day, before basketball began, there was always a registration period when all of the players were expected to check in, get their room assignments and keys, uniforms, etc. With hundreds of players showing up, it was prime time to scope out the competition and start making friends.
It was during this registration process one particular summer that we met Soggy. Realistically, I would doubt that I’ve spelled his name correctly, but I never saw it written down, so I’m going with Soggy. I’ll never forget the moment when I first saw him waiting in line to approach the table and introduce himself to the coach in charge of registration. He was decked out in Los Angeles Lakers gear; a purple t-shirt and purple shorts which managed to reach only about halfway to his knees, a Lakers baseball cap, complemented by white mid-high socks and a black fanny pack around his waist, which was, to say the least, the proverbial cherry on top of his already striking attire. He had arrived from France and walked right into our summer camp experience, and we felt immediately compelled to befriend him.
Soggy was initially resistant to our efforts to hang out with him, but he eventually came around to our jovial persistence. We asked his advice on all sorts of topics, though he never really embraced being the focus of our attention. To the best of my recollection, I would say that we were perfectly genuine in our attempts to make him feel more comfortable in a foreign and presumably intimidating situation, though our motivation to pick his brain was admittedly somewhat humor-driven.
At night, my friend and I would become restless in our dorm room, and it became our routine to entertain ourselves by making conversation through the courtyard with anyone willing to respond.
“Soggy, where are you?” we called out one evening, but he didn’t answer.
We tried a few more times, and after a while, we heard something along the lines of, “Come down to room 422! I got your Soggy, mother#$&^s!”
Encouraged, we yelled back, “Is that where Soggy is?”
It was not where Soggy was, and needless to say, we never went down to room 422.
The next day, I overheard a concerned coach approach Soggy.
“Soggy,” he began, “Were you okay last night? Your friends were looking for you, I was worried.”
Soggy had apparently been unaware of our attempts to locate him, saying, “Coach, I do not know what you are talking about. I was asleep at ten o’clock!”
Hearing this, I was shocked that our friend was such a disciplined adolescent. I had no idea that anyone at the camp went to sleep so early. In actuality, the motivation behind telling this story comes primarily from the fact that the other night I found myself crawling into bed at 10:00PM, and trying to think of the last time I had been to bed so early made me think of Soggy. Nevertheless, Soggy still makes me smile, so I’m glad for the occasion to talk about him. I hope he’s doing well, and to one day encounter his bright smile and fanny pack again.
The first day, before basketball began, there was always a registration period when all of the players were expected to check in, get their room assignments and keys, uniforms, etc. With hundreds of players showing up, it was prime time to scope out the competition and start making friends.
It was during this registration process one particular summer that we met Soggy. Realistically, I would doubt that I’ve spelled his name correctly, but I never saw it written down, so I’m going with Soggy. I’ll never forget the moment when I first saw him waiting in line to approach the table and introduce himself to the coach in charge of registration. He was decked out in Los Angeles Lakers gear; a purple t-shirt and purple shorts which managed to reach only about halfway to his knees, a Lakers baseball cap, complemented by white mid-high socks and a black fanny pack around his waist, which was, to say the least, the proverbial cherry on top of his already striking attire. He had arrived from France and walked right into our summer camp experience, and we felt immediately compelled to befriend him.
Soggy was initially resistant to our efforts to hang out with him, but he eventually came around to our jovial persistence. We asked his advice on all sorts of topics, though he never really embraced being the focus of our attention. To the best of my recollection, I would say that we were perfectly genuine in our attempts to make him feel more comfortable in a foreign and presumably intimidating situation, though our motivation to pick his brain was admittedly somewhat humor-driven.
At night, my friend and I would become restless in our dorm room, and it became our routine to entertain ourselves by making conversation through the courtyard with anyone willing to respond.
“Soggy, where are you?” we called out one evening, but he didn’t answer.
We tried a few more times, and after a while, we heard something along the lines of, “Come down to room 422! I got your Soggy, mother#$&^s!”
Encouraged, we yelled back, “Is that where Soggy is?”
It was not where Soggy was, and needless to say, we never went down to room 422.
The next day, I overheard a concerned coach approach Soggy.
“Soggy,” he began, “Were you okay last night? Your friends were looking for you, I was worried.”
Soggy had apparently been unaware of our attempts to locate him, saying, “Coach, I do not know what you are talking about. I was asleep at ten o’clock!”
Hearing this, I was shocked that our friend was such a disciplined adolescent. I had no idea that anyone at the camp went to sleep so early. In actuality, the motivation behind telling this story comes primarily from the fact that the other night I found myself crawling into bed at 10:00PM, and trying to think of the last time I had been to bed so early made me think of Soggy. Nevertheless, Soggy still makes me smile, so I’m glad for the occasion to talk about him. I hope he’s doing well, and to one day encounter his bright smile and fanny pack again.
Friday, January 22, 2010
Isn't It Supposed to End Soon?
Four Neupogen shots a day for eight days made my bones hurt to where it a nightmare to walk and impossible to fall asleep. Two consecutive seven-hour days on the Aphoresis machine left my veins bruised, sore, swollen, and reminiscent of those of a junkie. But, for whatever reason, I managed to harvest 6.5 million stem cells for that rainy day when my body stops making its own again and I'm in need of a "rescue transplant."
The stem cell harvesting ordeal preceded this most recent 5-day round of chemo, which marked number twelve and ended this morning. I'm patiently awaiting the inevitable onslaught of nausea, dizziness and stomach pain to drive me into fetal position for a few days, but as of this moment my body is resisting admirably.
I don't know what it was that made me think these final few rounds would somehow be easier to handle than were the others. I've known all along that chemo isn't the kind of thing for which your body can build a tolerance. I've made it this far, though, and there's obviously no way I'm going to slow down now.
My doctor came to see me yesterday, friendly as always, but armed with a dose of reality that I sometimes don't want to hear. The plan is still to complete the two remaining rounds of chemo (two!) and then to have scans done to see how much tumor is still showing up, which will hopefully then be blasted by radiation. Before embarking for Bethesda and the vaccinations, the hope is to have the tumor in remission, but the reality remains that this may not be the case. Furthermore, these vaccines are still in their clinical trial phase, are not exactly specific to my diagnosis, and just can't be viewed as the final piece of my puzzle. Hopefully, they will help teach my immune system to fight the tumor should it reveal itself and begin to grow again, but were that the expectation, we would be viewing these vaccines as significantly medically reliable rather than on a clinical trial basis.
After the rest of the scheduled chemo, the radiation, and the vaccines, I may still need more chemo. There's a chance that small amounts of tumor may still linger, and the best way to ensure that they don't spread will probably be to hit them with more, lower-intensity chemo until nothing shows up in the scans anymore. I'm fine with that, you know, I'd rather keep going until this thing is really in remission than to have to wonder if and when it's ever going to start spreading throughout my bones again. And there's still a good chance, or so I'm told, that I could reach remission on schedule, but I just don't want to be too hopeful. And yeah, I'm pretty scared.
My California girl, the one who has continually reignited my passion and inspiration throughout this hellish process; the one who effortlessly reminded me that there are still things in this world worth looking forward to, hasn't been doing so well. She recently had a seizure, along with a brain hemorrhage, and since then has been coming and going in-and-out of consciousness every few days. When I get a phone call, it's both precious and painful beyond the expression of words. She still makes me laugh, and it can feel like there's nothing wrong and everything is just the way it was, but in the back of my mind I can never help but think that the very conversation we're having could be the last we ever speak. And she's just not something I'm ready to let go of yet. I have too far yet to go to imagine doing it all without her. It's been a week since I heard her voice, and it's another heavy weight I'm willing to bear, but it just hurts on top of everything else. Still, I've known all along that I can't save her, and I knew from the start that I might never feel her close to me, and those are facts I was willing to accept. I'll just never stop wishing things were different. And it's going to hurt, I know that, I just thought we'd ease one another's pain a while longer before I inherited it all for myself.
It's hard to say that I wouldn't trade away my circumstances, or at least certain aspects of them, were I given the chance. I wish my recovery were more of a certainty, though I believe I'll eventually prevail through my persistence. I wish she were able to accompany me for more of the journey, since it seems inevitable that her stay in my life will prove too short, though it will never be under-appreciated.
I obviously feel closer to the end, whenever that might be, than I have at any point thus far. It would just be nice to know that the nightmare will actually end, at some point, preferably in the near future, and that good things await me not so long after that. I still haven't found a reason or a purpose for all of it, and I'm not expecting one to appear. I've been through twelve rounds of chemo, and only two more are scheduled. The wonderful girl from California who changed my life was unscheduled, and I don't think I'll ever find a good reason why the joy she brought me can't last any longer than it will, or why she deserves her fate and I have mine. It just seems very arbitrary. But I guess that's the way it is, and there are no reasons which exist to explain it.
For some reason, though, it still feels like the more effort I put into this incessant, arbitrary injustice, the more likely it is that good things will happen. It still doesn't make total sense to me, but I've already decided to go after the things I want, and I feel way too close to having that chance to become lazy and complacent now.
The stem cell harvesting ordeal preceded this most recent 5-day round of chemo, which marked number twelve and ended this morning. I'm patiently awaiting the inevitable onslaught of nausea, dizziness and stomach pain to drive me into fetal position for a few days, but as of this moment my body is resisting admirably.
I don't know what it was that made me think these final few rounds would somehow be easier to handle than were the others. I've known all along that chemo isn't the kind of thing for which your body can build a tolerance. I've made it this far, though, and there's obviously no way I'm going to slow down now.
My doctor came to see me yesterday, friendly as always, but armed with a dose of reality that I sometimes don't want to hear. The plan is still to complete the two remaining rounds of chemo (two!) and then to have scans done to see how much tumor is still showing up, which will hopefully then be blasted by radiation. Before embarking for Bethesda and the vaccinations, the hope is to have the tumor in remission, but the reality remains that this may not be the case. Furthermore, these vaccines are still in their clinical trial phase, are not exactly specific to my diagnosis, and just can't be viewed as the final piece of my puzzle. Hopefully, they will help teach my immune system to fight the tumor should it reveal itself and begin to grow again, but were that the expectation, we would be viewing these vaccines as significantly medically reliable rather than on a clinical trial basis.
After the rest of the scheduled chemo, the radiation, and the vaccines, I may still need more chemo. There's a chance that small amounts of tumor may still linger, and the best way to ensure that they don't spread will probably be to hit them with more, lower-intensity chemo until nothing shows up in the scans anymore. I'm fine with that, you know, I'd rather keep going until this thing is really in remission than to have to wonder if and when it's ever going to start spreading throughout my bones again. And there's still a good chance, or so I'm told, that I could reach remission on schedule, but I just don't want to be too hopeful. And yeah, I'm pretty scared.
My California girl, the one who has continually reignited my passion and inspiration throughout this hellish process; the one who effortlessly reminded me that there are still things in this world worth looking forward to, hasn't been doing so well. She recently had a seizure, along with a brain hemorrhage, and since then has been coming and going in-and-out of consciousness every few days. When I get a phone call, it's both precious and painful beyond the expression of words. She still makes me laugh, and it can feel like there's nothing wrong and everything is just the way it was, but in the back of my mind I can never help but think that the very conversation we're having could be the last we ever speak. And she's just not something I'm ready to let go of yet. I have too far yet to go to imagine doing it all without her. It's been a week since I heard her voice, and it's another heavy weight I'm willing to bear, but it just hurts on top of everything else. Still, I've known all along that I can't save her, and I knew from the start that I might never feel her close to me, and those are facts I was willing to accept. I'll just never stop wishing things were different. And it's going to hurt, I know that, I just thought we'd ease one another's pain a while longer before I inherited it all for myself.
It's hard to say that I wouldn't trade away my circumstances, or at least certain aspects of them, were I given the chance. I wish my recovery were more of a certainty, though I believe I'll eventually prevail through my persistence. I wish she were able to accompany me for more of the journey, since it seems inevitable that her stay in my life will prove too short, though it will never be under-appreciated.
I obviously feel closer to the end, whenever that might be, than I have at any point thus far. It would just be nice to know that the nightmare will actually end, at some point, preferably in the near future, and that good things await me not so long after that. I still haven't found a reason or a purpose for all of it, and I'm not expecting one to appear. I've been through twelve rounds of chemo, and only two more are scheduled. The wonderful girl from California who changed my life was unscheduled, and I don't think I'll ever find a good reason why the joy she brought me can't last any longer than it will, or why she deserves her fate and I have mine. It just seems very arbitrary. But I guess that's the way it is, and there are no reasons which exist to explain it.
For some reason, though, it still feels like the more effort I put into this incessant, arbitrary injustice, the more likely it is that good things will happen. It still doesn't make total sense to me, but I've already decided to go after the things I want, and I feel way too close to having that chance to become lazy and complacent now.
Friday, January 15, 2010
Sushi
When I was in grade school, my mom would pack my lunch each morning before I left the house. I would go through different phases during which I liked different snacks to accompany my sandwich, which would change as well depending on my preferred deli meat at the time. I remember one particular phase in which I really loved bologna and mustard. I can't remember the last time I had a bologna sandwich.
I've always loved to eat, and I've always been good at it. My grandparents used to be so proud of me whenever I ate a lot; it made me think that having the ability to stuff my face was some kind of legitimate talent.
I still go through periods when I crave different foods; my flavors of the week, if you will, but they don't last forever. That is, my cravings don't last for all kinds of food except for sushi. Sushi has remained the one food I think I could eat every day and never grow sick of it.
I started off with your basic California Roll; avocado, crabmeat, and cucumber. I always use Wasabi (I like spicy foods, and when it comes to those, Wasabi might take the cake) to add some kick and because it really clears your sinuses, and I always use soy sauce for added flavor. I know it's about as elementary as you can get with sushi, but California Roll is just a classic in my opinion.
When I began to broaden my horizons, I tried Unagi, which is freshwater eel. It has a very unique texture, as one might expect when biting into eel, but I'm always eager to try something new and Unagi turned out to be a nice complement to my sushi repertoire.
Those simple days were just the beginning. Now, I'm familiar with many kinds of fish, like the tuna rolls, white or regular, spicy or not, and Tempura, like the shrimp and crabmeat varieties. Salmon roll, yellowtail, octopus, and many others frequent my plate, all of which are prone to disappearance.
There's a restaurant in my town that serves all-you-can eat sushi. They used to offer it every Wednesday and Sunday, but since I've been sick they've made it available every day. The words "all-you-can eat" together with "sushi" are comparable to a song like Unchained Melody to me, for their beauty is timeless and I become very excited whenever I hear them.
Talking at this length about my love for sushi has made me somewhat self-conscious, but I would be lying if I were to claim that my mouth had not begun to water. My palate is now becoming adamant in its demand for it, and under normal circumstances I would readily satisfy its insistence. The only problem that stands in my way, and has for a while now, is that I'm not allowed to eat sushi! Cancer strikes again!
I've always loved to eat, and I've always been good at it. My grandparents used to be so proud of me whenever I ate a lot; it made me think that having the ability to stuff my face was some kind of legitimate talent.
I still go through periods when I crave different foods; my flavors of the week, if you will, but they don't last forever. That is, my cravings don't last for all kinds of food except for sushi. Sushi has remained the one food I think I could eat every day and never grow sick of it.
I started off with your basic California Roll; avocado, crabmeat, and cucumber. I always use Wasabi (I like spicy foods, and when it comes to those, Wasabi might take the cake) to add some kick and because it really clears your sinuses, and I always use soy sauce for added flavor. I know it's about as elementary as you can get with sushi, but California Roll is just a classic in my opinion.
When I began to broaden my horizons, I tried Unagi, which is freshwater eel. It has a very unique texture, as one might expect when biting into eel, but I'm always eager to try something new and Unagi turned out to be a nice complement to my sushi repertoire.
Those simple days were just the beginning. Now, I'm familiar with many kinds of fish, like the tuna rolls, white or regular, spicy or not, and Tempura, like the shrimp and crabmeat varieties. Salmon roll, yellowtail, octopus, and many others frequent my plate, all of which are prone to disappearance.
There's a restaurant in my town that serves all-you-can eat sushi. They used to offer it every Wednesday and Sunday, but since I've been sick they've made it available every day. The words "all-you-can eat" together with "sushi" are comparable to a song like Unchained Melody to me, for their beauty is timeless and I become very excited whenever I hear them.
Talking at this length about my love for sushi has made me somewhat self-conscious, but I would be lying if I were to claim that my mouth had not begun to water. My palate is now becoming adamant in its demand for it, and under normal circumstances I would readily satisfy its insistence. The only problem that stands in my way, and has for a while now, is that I'm not allowed to eat sushi! Cancer strikes again!
Wednesday, January 13, 2010
Ode to the Chills
Stop that, wouldn't you?
Funny, nobody's there
That was really me
Who made me feel that way?
But I didn't feel a draught,
And the windows are all closed
Pull the covers over my head
'Cause it's so damn cold
It comes all of a sudden
Up and down my spine
Like a xylophone
Played in ice cold chimes
Make my teeth chatter
Close tightly my eyes
Curl up in a ball
Hands clasped inside
I wish that it had been
Someone close behind
A soft and gentle touch
Send ripples through my mind
A hand upon my shoulder
A different place and time
Pull the covers closer
The only hands are mine
Settle under the sheets
To relaxation, I'll resign
Give myself to rest
Body, soul, and--
No, not again!
!@&% mother#$&*ing sonofa@%$& *##% @%^&!
Shivers, you know, it's fine
My body's own frozen stabbing from behind
Funny, nobody's there
That was really me
Who made me feel that way?
But I didn't feel a draught,
And the windows are all closed
Pull the covers over my head
'Cause it's so damn cold
It comes all of a sudden
Up and down my spine
Like a xylophone
Played in ice cold chimes
Make my teeth chatter
Close tightly my eyes
Curl up in a ball
Hands clasped inside
I wish that it had been
Someone close behind
A soft and gentle touch
Send ripples through my mind
A hand upon my shoulder
A different place and time
Pull the covers closer
The only hands are mine
Settle under the sheets
To relaxation, I'll resign
Give myself to rest
Body, soul, and--
No, not again!
!@&% mother#$&*ing sonofa@%$& *##% @%^&!
Shivers, you know, it's fine
My body's own frozen stabbing from behind
Saturday, January 9, 2010
Timing's a Bitch, Isn't It?
When I was eleven or twelve, I was named to the Little League Baseball All-Star Team in my town. After the regular Little League season ends, the assembled group of All-Stars has a chance to play the All-Star Teams from the neighboring towns and their associated Little Leagues. The goal is obviously to win and keep on winning, and to eventually have a shot at reaching the Little League World Series. Our team had won a few games early in the summer, and we were gaining confidence as we neared a big showdown with a local rival.
Our Little League fields are about a minute and a half from my house, not very far at all, so naturally I was a few minutes late to practice the day before the game. I ran up to the field, and our coach was already hitting balls around to the team as a warm-up. He told me to join the outfielders, though I played infield, and I remember him saying something along the lines of "take it easy" for a little while at the beginning of practice.
When my turn came to receive a fly ball off of coach's bat, I didn't anticipate the sinking liner that was hit my way. I closed on it, and obviously neglected the notion of "taking it easy," as the idea of letting it fall in front of me never crossed my mind.
I made a sliding catch, impressing nobody since it was just the warm-up drill, and when I looked down I saw the small rock that had lodged itself into my knee. And, after a few seconds, my leg and sock were soaked with blood.
I had made it through maybe fifteen minutes of practice before I was forced to leave by that vindictive stone. I needed stitches to pull the skin on my knee back together, and my agility was severely limited at the big game the next day.
We lost the game, and I think it was close, though the final score is pretty inconsequential at this point. But that was the first time I can remember wondering how a single moment could be so significant, yet so dependent on alignment and perfect timing. I was late to practice that day, so I wondered if I would have fallen on that rock had I been on time. I wondered if I had been even a few seconds later to practice than I was, would I have been in the exact same spot in the outfield, or would coach have hit the same line drive that led to my slide which landed a jagged pebble in my knee?
I wonder sometimes about the moment when my body made its mistake and created this tumor. I'll never know exactly when it happened, but I still wonder about the timing of it, and if I was doing something physically stressful or otherwise that prompted my body to send the wrong signals and deviate from the recipe that had worked for so long and brought me so far. If I had been a few moments late for whatever it was that I was doing that day, would the mistake have even been made? Or was it inevitable that I would eventually screw up the formula, regardless of timing or my activities on that fateful day?
I understand that this is simply postulation, and my situation is what it is regardless of the answers, though I'll never find them anyway. But timing dictates so much in our lives; whether we catch the bus or train, whether a quarterback connects with his receiver on a touchdown pass, whether we cross paths with our soulmate or narrowly miss them on the street, never knowing how close we've been to things being so different.
I'm sure timing has worked in my favor as well, though I find it rather unfortunate that I happened to stumble upon a rock that ruined my summer baseball experience. And in a single moment, my body created and released a tumor that has landed me in my current situation.
I'm fairly convinced that I'm owed the good fortune of some favorable timing in the future, though I really don't think it's worth occupying my time worrying about it. But it is interesting to look back on things that have happened and realize how close they were to happening differently, or not at all. It's funny how the unfolding of a few short moments today can bear so strongly on our tomorrows.
Our Little League fields are about a minute and a half from my house, not very far at all, so naturally I was a few minutes late to practice the day before the game. I ran up to the field, and our coach was already hitting balls around to the team as a warm-up. He told me to join the outfielders, though I played infield, and I remember him saying something along the lines of "take it easy" for a little while at the beginning of practice.
When my turn came to receive a fly ball off of coach's bat, I didn't anticipate the sinking liner that was hit my way. I closed on it, and obviously neglected the notion of "taking it easy," as the idea of letting it fall in front of me never crossed my mind.
I made a sliding catch, impressing nobody since it was just the warm-up drill, and when I looked down I saw the small rock that had lodged itself into my knee. And, after a few seconds, my leg and sock were soaked with blood.
I had made it through maybe fifteen minutes of practice before I was forced to leave by that vindictive stone. I needed stitches to pull the skin on my knee back together, and my agility was severely limited at the big game the next day.
We lost the game, and I think it was close, though the final score is pretty inconsequential at this point. But that was the first time I can remember wondering how a single moment could be so significant, yet so dependent on alignment and perfect timing. I was late to practice that day, so I wondered if I would have fallen on that rock had I been on time. I wondered if I had been even a few seconds later to practice than I was, would I have been in the exact same spot in the outfield, or would coach have hit the same line drive that led to my slide which landed a jagged pebble in my knee?
I wonder sometimes about the moment when my body made its mistake and created this tumor. I'll never know exactly when it happened, but I still wonder about the timing of it, and if I was doing something physically stressful or otherwise that prompted my body to send the wrong signals and deviate from the recipe that had worked for so long and brought me so far. If I had been a few moments late for whatever it was that I was doing that day, would the mistake have even been made? Or was it inevitable that I would eventually screw up the formula, regardless of timing or my activities on that fateful day?
I understand that this is simply postulation, and my situation is what it is regardless of the answers, though I'll never find them anyway. But timing dictates so much in our lives; whether we catch the bus or train, whether a quarterback connects with his receiver on a touchdown pass, whether we cross paths with our soulmate or narrowly miss them on the street, never knowing how close we've been to things being so different.
I'm sure timing has worked in my favor as well, though I find it rather unfortunate that I happened to stumble upon a rock that ruined my summer baseball experience. And in a single moment, my body created and released a tumor that has landed me in my current situation.
I'm fairly convinced that I'm owed the good fortune of some favorable timing in the future, though I really don't think it's worth occupying my time worrying about it. But it is interesting to look back on things that have happened and realize how close they were to happening differently, or not at all. It's funny how the unfolding of a few short moments today can bear so strongly on our tomorrows.
Sunday, January 3, 2010
4..3..2..1..
4..3..2..1.. I can finally see the light at the end of the chemo tunnel, and I'm hoping that these last four rounds will disappear without much trouble. Over the past two days, number four came and passed, so I'm left looking at three remaining rounds of chemo on this torturous schedule.
Over the next few days, I'll be expected to take four times as many Neupogen shots in order to spike my white blood cell count far beyond the threshold of adequate recovery. The doctors are intent upon harvesting my stem cells, freezing them and keeping them available on the off chance that my body forgets once again how to make new, healthy bone marrow. At this point, such a development seems unlikely, and the vaccinations I intend to receive at NCI will cover the purposed accomplishments of a stem cell transplant, anyway, but I suppose I'd rather be safe than sorry.
Harvesting my cells will entail connecting two IV lines, one from each of my arms, to a machine constructed for the very purpose of collecting blood content. For me, it's a "been-there, done-that" kind of experience, though I hope that this time it doesn't quite last seven hours and I can manage to walk away from it without any ruptured veins. When I went through a similar procedure during my first stint at NCI, I had a tumor fever, the actual procedure took three hours longer than anticipated, and one of my veins popped like bubble wrap and bled profusely. I'd like to believe that I've already seen the worst that can happen, and while I hope it goes more smoothly this week, at least I know I'm prepared for anything.
Either a stem cell transplant or the administration of these vaccinations down at NCI in Bethesda, at least one or the other, will inevitably come to pass. The intention of such procedures is obviously to keep me healthy for as long as possible, and realistically to save my life. Unfortunately, they each require that my immune system be beaten and battered, broken down to a level of complete vulnerability, which can conceivably be dangerous, and will most definitely be uncomfortable for me, to say the least. My guess is it will be just like the beginning of chemo all over again, when I routinely yearned for death and an end to what seemed like never-ending, inexplicable misery. I'm hoping that this time I'll be better prepared for it, though I really don't think it's something for which I can realistically prepare myself.
Preparation can really only take us so far, and pain will feel like pain regardless of how ready you are to be overcome by it. Being prepared is far from being able to protect oneself, which is damn near impossible as far as I'm concerned.
When my grandpa had a stroke, I knew his time was limited, but I couldn't prepare myself for or protect myself from the pain of losing him. When my girlfriend first spoke of leaving New York for a job and a life in Boston, I was made aware that our time together might have begun to dwindle, and despite my denial, I don't know what I could have done to protect myself from that impending pain. And now, having met someone who has lifted me from the depths of sorrow and taught me to believe in this life again, I'm constantly reminded that despite my deepest wishes, I can do nothing to protect her from her own cancer. For me, I can remind myself what it was like to have my body broken down to nothing, the way it will be again, but I know there's no feeling like the real thing, no camouflage behind which I can hide, and nothing I can say to myself that will fully prepare me for it.
It is, nevertheless, a part of the process, and I'll gladly take my beatings if it means surviving this thing. I still have three rounds of chemo before I undergo more scans to determine the length and intensity of the proposed radiation I'll receive prior to the vaccinations or even the notion of a stem cell transplant, so I'll continue to proceed one day at a time. (I've learned that this is the best, or really the only approach, since my requests and attempts at falling asleep for days or weeks at a time have gone for naught. Honestly, at this point, I'd gladly settle for sleeping through an entire night.)
There's a lot we can never be prepared for, but I'm going to do my best to run through these final three cycles like a bull. Chemo is one obstacle for which I feel as prepared as I'm ever going to be. And I'll keep treading towards that light at the end of the tunnel, because with each passing day, it can't come anywhere but closer.
Over the next few days, I'll be expected to take four times as many Neupogen shots in order to spike my white blood cell count far beyond the threshold of adequate recovery. The doctors are intent upon harvesting my stem cells, freezing them and keeping them available on the off chance that my body forgets once again how to make new, healthy bone marrow. At this point, such a development seems unlikely, and the vaccinations I intend to receive at NCI will cover the purposed accomplishments of a stem cell transplant, anyway, but I suppose I'd rather be safe than sorry.
Harvesting my cells will entail connecting two IV lines, one from each of my arms, to a machine constructed for the very purpose of collecting blood content. For me, it's a "been-there, done-that" kind of experience, though I hope that this time it doesn't quite last seven hours and I can manage to walk away from it without any ruptured veins. When I went through a similar procedure during my first stint at NCI, I had a tumor fever, the actual procedure took three hours longer than anticipated, and one of my veins popped like bubble wrap and bled profusely. I'd like to believe that I've already seen the worst that can happen, and while I hope it goes more smoothly this week, at least I know I'm prepared for anything.
Either a stem cell transplant or the administration of these vaccinations down at NCI in Bethesda, at least one or the other, will inevitably come to pass. The intention of such procedures is obviously to keep me healthy for as long as possible, and realistically to save my life. Unfortunately, they each require that my immune system be beaten and battered, broken down to a level of complete vulnerability, which can conceivably be dangerous, and will most definitely be uncomfortable for me, to say the least. My guess is it will be just like the beginning of chemo all over again, when I routinely yearned for death and an end to what seemed like never-ending, inexplicable misery. I'm hoping that this time I'll be better prepared for it, though I really don't think it's something for which I can realistically prepare myself.
Preparation can really only take us so far, and pain will feel like pain regardless of how ready you are to be overcome by it. Being prepared is far from being able to protect oneself, which is damn near impossible as far as I'm concerned.
When my grandpa had a stroke, I knew his time was limited, but I couldn't prepare myself for or protect myself from the pain of losing him. When my girlfriend first spoke of leaving New York for a job and a life in Boston, I was made aware that our time together might have begun to dwindle, and despite my denial, I don't know what I could have done to protect myself from that impending pain. And now, having met someone who has lifted me from the depths of sorrow and taught me to believe in this life again, I'm constantly reminded that despite my deepest wishes, I can do nothing to protect her from her own cancer. For me, I can remind myself what it was like to have my body broken down to nothing, the way it will be again, but I know there's no feeling like the real thing, no camouflage behind which I can hide, and nothing I can say to myself that will fully prepare me for it.
It is, nevertheless, a part of the process, and I'll gladly take my beatings if it means surviving this thing. I still have three rounds of chemo before I undergo more scans to determine the length and intensity of the proposed radiation I'll receive prior to the vaccinations or even the notion of a stem cell transplant, so I'll continue to proceed one day at a time. (I've learned that this is the best, or really the only approach, since my requests and attempts at falling asleep for days or weeks at a time have gone for naught. Honestly, at this point, I'd gladly settle for sleeping through an entire night.)
There's a lot we can never be prepared for, but I'm going to do my best to run through these final three cycles like a bull. Chemo is one obstacle for which I feel as prepared as I'm ever going to be. And I'll keep treading towards that light at the end of the tunnel, because with each passing day, it can't come anywhere but closer.
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