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.
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