Friday, October 30, 2009

Don't Sweat the Small Stuff

I've been trying to figure out why I seem to do everything in a rush. Maybe I'm just a New Yorker, and maybe taking my time is just not a part of my nature, but it strikes me as odd that I can't really do anything unless I'm in a hurry. When I eat, I want to finish what's in front of me, or on my fork, or in my mouth because I'm usually anxious to move on to the next flavor. The other night I was clipping my fingernails, and it was like I couldn't get through the ten nails fast enough because I was so anxious to stick myself right back in front of the television where I had been before.

The term "leisurely stroll" is really just a figure of speech to me. It doesn't matter how early, or even late, I am to wherever I'm going; if I'm walking, then I'm walking fast. When I played basketball in college, we were scolded if we were caught moving too slowly. Everything was expected to be done at "game speed," of course because the pace and focus employed during practice was the best predictor of our next game performance.

I would routinely run from basketball practice to a cappella rehearsal or to play rehearsal because my schedule was always jam-packed and I was overextended and that's just the way I liked it. It kept me out of trouble, or so I would say, though it really just made me budget my time well enough that I could still accomplish some mischief on the side of my academics, achievements and accolades.

In terms of my studies, I've never been able to plan anything too far ahead of its due date and then take my time giving it the proper research and preparation necessary to finish it in advance. For whatever reason, I prefer a time crunch. The pressure has always seemed to bring out the best in me, and I produce my best work under the most demanding circumstances. It's procrastination, pure and simple, but the fact is, I can't focus without a deadline breathing down my neck, and I've never written an outline. I always just wing it and figure out the structure of whatever I'm doing as I go along, organizing the pieces into what eventually becomes a coherent body of work. I've been told that it's because I'm a Libra, or just that I'm a fool, but whatever it is, it's not going to change now, and I'm pretty okay with it.

I'm inclined to believe that the activities of my daily routine would be more enjoyable if I could slow myself down enough to take the time to appreciate them. I'm so used to running from one thing to the next, starting with the first thing I do when I wake up and ending when I go to sleep, it just isn't natural for me to "stop and smell the roses."

At least, that's the way my life has always been until now. My natural rhythm is hurried, I'm high-strung, short-tempered, and I demand immediate results from both myself and those around me. But now, this has happened and it has changed everything. The speed at which I live my life has slowed to a crawl. Walking has become my new means of exercise, though my muscles seem to have forgotten their purpose. I have to take frequent breaks, and I'm not nearly as quick on my feet as I would like to be, or have been in the past.

It feels like everything is in slow motion, it's not just the way I walk. I get out of bed slowly in the morning because moving too fast makes me feel sick. I eat slowly because I want to make sure whatever it is goes down smoothly; hiccups are painful, throwing up is worse. I think slowly because I take morphine three times a day, unless I've just become dumber, and I'm not nearly active enough to justify my body maintaining the same metabolism that I'm used to having. I've been given no choice, especially with all of this free time on my hands, but to take plenty of time for consideration and reflection.

In the spirit of being positive, it can't be a bad thing to learn to appreciate some of the little things in life. Waking up on my own, without an alarm clock, is always a pleasantry. I don't have to put on a suit every morning and brave the commute, though breakfast has never been such an adventure. It is breakfast, after all, as long as it stays put.

Maybe it's some kind of blessing to be forced to slow down for a little while. I've always wondered about the next thing, trying to find the answers to the questions and the stories for the chapters in my life that haven't been written. But there's only so much I can figure out while spending the majority of my time in bed, on the couch, in front of the t.v., or wired to an I.V. drip.

It's all too common to rush through everything to the point where life becomes routine. I never want to feel like my life is mundane, like I know exactly what each day will look like before the sun rises. It's the way things are for me right now, but I fully expect to lead a normal life again someday, as long as I can get through this. My message, then, for myself and anyone else interested, is just to slow down for a moment every once in a while. You can all be thankful that your entire lives are not paused the way mine is, but you can still call a timeout when you want to. When you can't figure something out, you can take a step back, refine your approach, and go after it again. The relentless pursuit of satisfaction can be fulfilling, but also frustrating, because things will never go your way all the time. Patience and compromise can be ultimately rewarding, and seeing the big picture will usually overshadow the stresses of minutia (i.e. don't sweat the small stuff).

I'm allowing myself a chance to relax. I'll appreciate the time spent on my own, time for my own thoughts and prayers and imaginative tangents, and I'll also cherish the time I spend with others, because everyone's busy and it's nice to spend quality time with the people I care about. Surely, that's the lesson I'm supposed to be learning here and sharing with everyone else. It's the most sensible explanation for a complicated situation. I'm just biding my time on the bench until it's time to go back into the game.

Tuesday, October 27, 2009

The Two-Day Rule

When I used to lift weights, I would refer commonly to what I knew as the "two-day rule." It means that after lifting, you can usually expect to be sore not on the day immediately following the lift, but on the day after that, the "second day." Depending on the intensity or duration of the lift, you might be sore the very next day as well, but generally I knew my body and could anticipate the length and severity of my soreness. That way, I was prepared for the necessary rest, replenishment, and recovery my body needed to get stronger.

Today is my second day removed from a five-day chemo treatment. It's not quite the same, but I feel like my body has been beaten. I feel like a couple of tough guys got together and roughed me up a bit. And while it wouldn't be the first time I've ever taken a punch, at least in the past there was someone against whom I could defend myself. Right now, I've got two tender cheekbones, my chest hurts to the touch, laying down makes everything sore, I think I took a few shots to the legs, and to top it off my stomach is a mess so I might as well have taken a swift kick to the nuts along the way, too. This chemo is one bully the likes of whom I've never crossed.

The real beauty is that even though this last round was five days long, they pushed the start back a day to get all of those tests and scans in beforehand, and since we're trying to compress everything to make sure I really have no recovery time, I'm already supposed to be back there a week from today. So, in seven days, I'll be tied to the whipping post once again.

I know I've marveled before at the body's ability to rehabilitate itself. We tear our skin off, and it usually grows back. We bang, bruise, and sprain our joints and bones and ligaments and, in most cases, our bodies can find a way to piece them back together. But it still amazes me that one simple mistake; one false move in a million routine patterns of seemingly functional insignificance could spell irreparable disaster. I mean, really, our cells divide and duplicate themselves all day long since the moment of conception, and all that has to happen is a "D" gets flipped for an "A" and the formula is ruined. The new creation is a tumor; a downward-spiraling, ticking timebomb of destruction in our brains or spinal cavities, and for some reason it isn't the same as any other kind of thing because our bodies don't have an answer for it. It just doesn't make sense how our bodies can be so evolved, yet so fragile and so vulnerable at the same time.

Where would we be without modern medicine? I was born with pyloric stenosis, which means that the opening between my stomach and small intestine was too narrow, so I wasn't digesting any food and if it hadn't been for a fairly modern surgery, I wouldn't even be around to be fighting this new and ever-more exciting medical anomaly. I don't even mean to joke about it; I'm afraid I should be a little weary of trying to beat this because maybe I'm just testing fate by relying so much on medical technology. Maybe it's just a matter of time before my body comes up with something ahead of our diagnostical capabilities, and then I'm screwed. I shouldn't even say that, though, lest I forget for a moment the monster in my bones whose wrath I'm praying will lie dormant for the remainder of eternity.

I've digressed so far from my original direction that I'm not sure anymore where I'm going with this. I suppose I could reiterate the point that as long as I'm still kicking, and as long as I've got a shot, things could always be worse. And that's a sentiment worth repeating. There's always someone whose monster won't go to sleep, no matter what Molotov cocktail of drugs and poison the medical miracle-makers can concoct to throw at it.

Good people, better than I, are doomed to such a fate. The thought of it just seems to drain all of the air out of the room. But it makes me want to be better. I know those people won't stop fighting until that final breath, and that's a lifetime's worth of inspiration for me. I will forever hesitate to take a simple moment in this life for granted, though it will probably take some getting used to, because I've never lived that way before. But, having thought about it, there's really no other way to live. It's all just too fleeting and too ephemeral to fail to take the time we do have here to try and be better. I'm going to be better to myself, more forgiving of my mistakes, better to those around me and to those close to me, because they deserve it. We all deserve it because if we don't start treating people better, nobody ever will. Nobody's going to do it for us, but if we each make that small adjustment to be a slightly happier, friendlier, more accepting or more welcoming individual, the implications could be enormous. Tragedy will still exist, and unspeakable misfortune will befall the few, but it seems like a no-brainer to me that fewer strangers means more friends and more love and that breaking down some of the other barriers that pervade our volatile social coexistence might only tempt fate to be more forgiving. Maybe it could work, and maybe fewer monsters would sneak up from inside of us. Maybe it wouldn't work, and not a whole lot would change, but foregiveness is still a powerful thought.

Forgiving my body its mistake won't erase the tumor it created, but holding onto that grudge and refusing to forgive won't get rid of it either, so it's a matter of the kind of person I'm going to be. I'd imagine that if those with gloomier prognoses than I can find it in their hearts to forgive their own conditions, then I sure as hell can, too. And if we could all learn to forgive just a little bit better, then fewer people might actually be recovering from an old-fashioned ass-whooping, or worse, the way my body's feeling today. That's something I'll gladly hope for.

Sunday, October 25, 2009


When my ex-girlfriend and I began our "break," I thought it would be noble or worthwhile or fulfilling on my part to begin counting the days, or months, or even years until we could once again be together. After a few days, it occurred to me that the day might never come when we would reuinite, so my endeavor would be entirely in vain, trying to prove something to someone that just doesn't need proving. People grow up, people grow apart, people change in some of the most unforeseeable ways and there's just nothing that any of us can do about it. The truth of the matter is that the day may never come again when we make sense for one another, and chronicling my daily sufferance on a flimsy notepad was not going to change that.

It seems to me that counting my remaining days of chemotherapy is much more timeworthy, especially considering that it has a planned end date.

Today is the fifth and final day of the current five-day chemo. Needless to say, I'm anxious to go home. After two Bone Marrow Biopsies, a bone scan, an EKG, and little to watch on television, I'm yearning for a comfortable bed.

After today, I will have completed 21 of 49 chemo days. It still leaves a lot to be done, but it's six of the fourteen rounds overwith and so far I've come out halfway alright.

Nothing is ever going to be perfect, and even having the audacity to expect it to be so is like asking for punishment. A relationship may disappear without explanation or understanding, health may deteriorate in a similarly mysterious fashion, and we are left to our own means of coping with the situations that arise.

Like I said, I still have a long way to go. Eight more rounds of chemo, plus scans and vaccines and radiation and whatever else they decide to throw at me, but right now, at the end of this lengthy cycle, the battle doesn't seem as far uphill as it has in the past. Maybe the nausea and dizziness will kick in and take care of that, but right now, in this very moment, I'm determined. And determination can certainly accomplish a lot of unlikely feats.

Thursday, October 22, 2009

Nine More Years?

Today, I heard the results of yesterday's Bone Marrow Biospies, which found no tumors in the base of my spine! The Biopsies were still sent to a lab to be studied more closely, and the doctors expect that there will still be some tumor in the bones, since the bones are always the last to heal. My PET Scan from Monday also came back, and while the results weren't groundbreaking, there is still clear and substantial progress being made. The same was found to be the case with today's bone scan.

All of these tests and pre-test procedures are tedious, but it's really nice to know that all of the hard work and suffering is paying off. Though I've been told that the high rate of recovery I've witnessed so far will likely taper off towards a slower pace, my only hope is that the treatment continues to be effective, so I can get the disease into remission and head back down to NCI (National Cancer Institute) in Bethesda, MD for the vaccines.

Immediately before chemo started, I was lucky enough to take part in a vaccine trial for a variety of very rare tumors. It consisted of a number (six, to be exact) of Bone Marrow Biopsy samples to isolate the tumor, followed by a day of collecting my blood and platelets in order to create a personalized vaccine of my own, for my own particular illness. Though the trip to Bethesda was painful and postponed the beginning of chemo, the hope was that by administering the vaccine to me in the end, once the tumor is in remission, then my body will have a better chance at preventing the tumor from returning. Apparently, the second vaccine trial run was fairly effective and with new and improved research and procedures, the hope is that this trial will be even more successful than the last.

The logistics seem to add up, which is great. But we all know that numbers and statistics don't always hold true in the real world. When talking to my friend, who was really excited over the news of the past few days, he told me that "all I have to do is focus on the big picture; the light at the end of the tunnel."

He is exactly right. If I could focus all of my energy and attention on that day so many months from now when I hope to hear those magic words that I can go back to living my life, it would all be so much easier for me. Unfortuntately, that just isn't possible. I still have to feel the nausea slowly creeping in as I sit here in my chemo bed. I have to deal with the next two weeks of illness, which make the routine things in the day ever more difficult, lonely, and frustrating. I have to continue living in a body and a mind that I don't fully recognize, continuing to wonder when I might once again feel like myself.

My dad and I came to the consensus together the other day that at this point in time, it would be hard to see my life being any worse. The limitations on my daily opportunities combined with the constantly overwhelming sickness make it seem obvious that my life is a troubled one. Although it sounds awful, it really made me feel better to hear someone else agree with me that my life was just about as bad as it could get.

I joined Planet Cancer, which is an online social networking site for young adults with cancer. I didn't expect to meet a ton of people, but I want to get my blog out there to as many people as possible and maybe even to connect with some people with whom I share my struggle.

The other night, around 12:30am, a girl sent me a message on the site's instant messaging system. Having been previously unaware of such function's existence, the instant message caught me by surprise.

She told me her name, and I reciprocated with mine. She asked where I was from, I answered and she answered back. To make a long story short, I was shocked that this girl, who happened to be fourteen years old, was meeting people on this site at 12:30am on a Tuesday, or a Wednesday depending on how you look at it. I would like to believe that even if things are bad, like even as bad as cancer, that 12:30am is still pretty late for a fourteen year-old girl on a weeknight.

More disturbing to me still was this child's revelation that she has been battling cancer since the age of 5. That makes nine years. Nine years makes my four months seem trivial and easy, though a simple length of time cannot begin to explain this experience, nor can one use time as a means of beginning to understand it.

My experience has been undoubtedly different from hers. How? I can't be sure, though hearing her say "nine years" made me feel deeply for her and put my own six-or-so more remaining months in a much different perspective. It also made me wish so strongly that I will be done with this thing after whatever chemo, radiation, vaccines, etc. they say need to be done are done.

Nine years? It's a scary thought. But I've always said I would take this one day at a time. And today, on a daily basis, my life is a colossal struggle. At least I can find solace in the fact that my tests came back nicely, so the treatment is working. I'm dedicated to being in remission and on with my life way sooner than nine years from diagnosis.

Tuesday, October 20, 2009

Doing the Best I Can

One of my mom's friends recently asked me about the source of my motivation and strength. In the context of the conversation we were having, it was inherently a compliment to my recent perseverence, but I think my response was somewhat underwhelming.

I told her that I don't really have any special source of guiding inspiration. I just tell myself that if I can continue to be, continue to exist, simple as that, then days will continue to pass, one by one, until this whole thing is over. Eventually, it will be over, one way or another, and again there's no use in stressing over the unknown outcome because I'd rather concern myself with the things I can control. And, since there's not much I actually do control anymore, I'd rather not concern myself with much of anything. It's just easier, and I'll take some easy in the midst of so much being hard.

Though she seemed to appreciate my honesty, I wonder what my mom's friend's true reaction was to what I had said. She is a more spiritual person than I, to be sure, and it's no secret that I've been feeling frustrated and rather void of enthusiasm.

It seems that so often while growing up, you're taught to "do your best," or to "try your hardest," and that if you do, somehow things will turn out alright. You may not always win, and things can't always go your way, but you're lead to believe that if you put in enough effort, good things will happen.

But then, there's always the unpredictable. A bad call from a referee can ruin a great game, or a vindictive judge can offer a low score to a great routine, a critic can rip great work, and there's always a chance of rain on the day of a parade. While we can try to prepare ourselves for the unpredictable, it usually forces a deviation from our original plans.

I've asked myself if I have continued to do my best and to try my hardest in the face of my most trying and unpredictable obstacle. The truth is that I really don't know. Every day is a struggle, and for that reason I know I'm trying, but it's hard to tell to what degree my effort reaches.

"Trying your hardest" sounds so noble and deserving of merit, or of positive reinforcement. But in my situation, isn't it okay to just do enough to get by? If I somehow try harder, will it make me less nauseous sooner after chemo? Probably not. That sort of thing is out of my control, but its uncertainty is disincentive for me to give my maximum effort on a daily basis because I know my effort will not be rewarded.

Taking a more far-sighted approach helps, since each day that I try to improve and get stronger may pay dividends in the end results of the treatment and in my recovery. But the chemo is still the treatment and dictates my improvement, and while taking care of myself and being safe constitutes doing my own part, it seems boring and effortless.

Sitting here on the couch, convincing myself to accept the inevitable chemo that looms like a dark cloud over tomorrow doesn't take a whole lot of effort. I don't know what I could really do to try harder at sitting here on the couch. Maybe I'll put my feet up. If I could drink, I'd make a cocktail.

I could try harder to wait patiently, since I spend so much time waiting for procedures to be done. Maybe I've been too concerned with how long it takes to finish them, rather than with their results. Maybe that's because I don't want to concern myself with the results in case they don't come out as well as I want them to, so I preoccupy myself with logistics.

Yesterday was my second PET Scan. The first one, still in the days of I.V. pain meds, was one of the worst experiences of my life, as I was taken off the meds for six hours before the PET Scan administrator had me hold and suspend my arms above my head while lying on my back for 45 minutes. And, though I begged for mercy, she had no way of knowing that I had tumors in my ribs, back and shoulders which were making it torturous for me to hold my arms up. Of course, she could have just listened to me when I told her how much pain I was in, but she had her own agenda.

The doctors later told me that holding my arms over my head was by no means necessary for a successful PET Scan.

I was lucky that my mother happened to show up for the last fifteen minutes of the first scan, because she held my arms in place as I squirmed and writhed in pain inside that plastic tube. Otherwise, I would have had to start all over.

At least yesterday's scan didn't end with me shaking uncontrollably in a pool of my own sweat, letting out an exasperated wail as my arms dropped; a scream that still haunts my mom and sister to the point that they refuse to talk about it. No, yesterday's scan took only an hour longer than expected, with only three failed attempts at putting in an I.V., and finally a successful one that sent blood streaming down my arm.

I departed with my left arm the size of a pillow because of the reaction I had to whatever injection I was given during the scan. And, though I'm quite sure I made my discomfort known to her at the time, the nurse, realizing her mistake after the damage had been done, immediately blamed me for not telling her to stop.

In all honesty, I was relieved to be out of there with nowhere near the headache of the first experience. As far as effort goes, it did take considerable effort on my part to keep from reprimanding the nurse for her idiocy, especially after she had blamed me for her mistake. In hindsight, I commend my silence.

Then, today, I was told that Friday's MRI showed no tumor in the soft tissue of my shoulder, which was thought to be the primary location of the tumor. That's right. The tumor is gone from my shoulder. It doesn't mean anything yet with regards to the PET Scan, which will show us the rest of my body, but I couldn't have dreamed of a better result from that MRI.

At the beginning, the doctors were saying that the tumor was so strong in my shoulder that I would probably need surgery just to maintain close to a full range of motion there. I don't know if this means that I won't, but at least my shoulder is once again my shoulder. It's not some skin and bones with this foreign entity that came in and took over. At least in my shoulder, I've taken back what's rightly mine.

I don't think there's an easy answer to whether or not I'm trying my hardest. Maybe that lesson doesn't fully apply to me right now, though I've trusted it for as long as I can remember. I've always been passionate about the things that are important to me, and while my recovery is obviously important to me, it's just not feasible to give it my all every moment of every day.

And, while I've spoken to God, or whatever supernatural force it is to whom we speak at night, more often over the past few months than I probably ever have before, I'm still skeptical. When I get a card in the mail that urges me to feel God's uplifting presence, my first response will likely still be to crack a joke about feeling God's presense while my face is buried in his porcelain crotch (you know, while praying to the "Porcelain God"). That's just the way I am.

But I do believe that somehow, someway, when this is all over, I will be a better and happier person for having been through it. Just promise me one thing, that you'll remind me of the fact that I just said that the next time I want to give up and throw it all away.

Friday, October 16, 2009


It occurred to me this morning that maybe I should have seen all of this coming. I mentioned in my last post that a few months before it started, I went through a pretty difficult break-up. I was still having a rough time with it when the tumor set in. But shortly after the break, in May, was my best friend's birthday. As a celebration, we went down to Atlantic City for a night to have some fun and to take my mind off of my recent loss.

I have a strong belief that your mindset, or karma, or whatever you want to call it, plays a large role in the kind of luck you carry with you when you enter a casino. My game is Blackjack, and I usually play well, but on this particular occasion I could hardly fake a good mood and I lost. My friend won, however, so it wasn't all bad, especially since we were there for his birthday and that's a damn good reason to win, if you ask me.

We split a cheap room at the Showboat, and for at least one night I was able to separate myself from the grief that had been consuming my every day.

The next day had rain in the forecast, and we had decided on spending just a few more hours into the afternoon before getting in the car to return home. For those who don't know, Atlantic City is right on the water, and a long boardwalk densely populated with little novelty shops, restaurants, kiosks and arcades connects a string of casinos that lasts farther than the eye can see. While it was expected to rain, we walked outside after a late breakfast into unpleasantly bright sunlight.

We began to stroll the boardwalk, taking a few minutes here and there to peruse the shops, though we didn't buy anything, and by all accounts we were having a nice time. But, before long, while walking down the center of the wood-paneled boardwalk, two pigeons conventiently pooped right on my chest. My friend and I each saw them flying towards us from down the strip, but it happened so fast, neither of us could really have done anything to avoid it. It was like they had planned it between the two of them, like a little game they play, and I just happened to be the victim of the moment.

You know, one pigeon turns to the other and says, "Alright, Ed, how about that one there in the yellow t-shirt?"

"I've got him in my crosshairs, Pete. Locked and loaded," says the other.

And, before I know it, they're right overhead and it's "bombs away," and "bang," there's poop all over my chest. They had just about the best aim in the world, too, since the poop landed in perfect symmetry on either side of my chest. I guess they may have been aiming for my face and just barely missed, but when I looked down I found bird poop just about two inches above each nipple.

My friend reminded me that it's generally considered good luck to be the recipient of bird poop on a sunny day, or any day for that matter, but to me it just seemed to go along with the recent theme of the world shitting on me. My hypothesis appears to be closer to the truth, considering that about two short months later, I was diagnosed with cancer.

As I said before, I don't always have bad luck at casinos. In fact, I usually do well and win. One time, this same best friend and I were at Niagara Falls with another of my best friends (I have a few), and the three of us were all sitting together at a Blackjack table. My other best friend, who wasn't in the previous story, wasn't very well versed in the intricacies and betting schemes of the game, so I was doing my best to help him along whenever he asked for advice. I was doing well, making decent conversation with the dealer, who appeared to be about our age, and he seemed to agree with the philosophy I was using to teach my friend how to play.

The dealer was a really nice guy, and as I said earlier, I truly believe that good karma at the table leads to favorable results. The only oddity that stood out about this dealer was that his voice was very weak and high-pitched, almost like that of a girl. I presume he had simply undergone some sort of surgery to make it turn out that way, but it wasn't the first time I'd come across that sort of situation and it made no difference to me what his voice sounded like.

My friend, however, the same one from the first story, must not have been as aware as I that an operation, usually performed out of necessity to remedy some dangerous condition, could leave a man's voice sounding that way.

At some point, my other friend, the Blackjack novice, was dealt a tricky hand, and for some reason he didn't agree with my advice for him. We asked the dealer, who echoed my instructions, but still my friend wasn't convinced. In the end, he decided against both of our opinions, and as luck would have it he lost the hand.

"See, you should have listened to her-- HIM!" said my friend from the first story, and though he tried to cover it up, the slip was undeniable.

I tried pretending like I hadn't heard anything at all, and so did the dealer, who sort of put his head down shamefully for a moment before picking the cards back up to deal. And, after a few awkward moments, we were again playing Blackjack.

You could probably have predicted that after making such a comment, my friend's luck turned immediately downhill. In fact, I wouldn't be surprised if he lost every hand from there on out. I, on the other hand, continued the good rapport I had created with the dealer, and my good fortune continued until I finally decided to walk away with a few hundred dollars' earnings in my pocket.

That second story clearly has little to do with my cancer, but I like telling it and it reminds me that things haven't always been so bad.

I've come to the point in my treatment where the doctors have ordered an MRI, a PET Scan, and another Biopsy, which will be my ninth. A Biopsy is when they remove a sample of bone from the base of my spine from which to take a sample of the tumor. Yes, they actually break off a piece of my spine and I assume try not to crack the area around it too much. And bone takes a really long time to heal. And yes, I endured eight of these Bone Marrow Biopsies within the first few weeks of hospital experience, as three different hospitals scrambled to find a diagnosis for what was ailing me. One of them was actually done while I was awake, an experience that pained and shocked me to my very core.

I just returned home a little more than an hour ago from the first of the three tests, a routine MRI. Or, at least, it should have been a simple, routine MRI.

The actual MRI takes only somewhere between fifteen minutes and an hour, depending on the body part being scanned and the extent of the imaging needed. This one took about an hour, which I didn't mind, but what did bother me was the other five hours I spent waiting in the hospital to have it done. Just another example of terrible communication between members of the hospital staff, and again I'm the one who has to suffer.

They had me come in at 9:30am today, only to tell me that they couldn't see me until noon. So, I obeyed the orders they gave me and sat around the clinic until I was told to go down to the MRI facility. The secretary there told me that she was all booked up, and since I had been waiting upstairs in a different place, it was no better than just showing up when I walked into the room. After two and a half more hours of arguing and watching people call one another to accomplish nothing on the phone, and taking elevators back and forth between the first and seventh floors just trying to remedy an inexcusable mistake that they had made, I was told that another MRI facility in the same building would be able to squeeze me in after they were done with their current patient.

I was then escorted upstairs to the other facility, where, wouldn't you know, I walked into a dead empty waiting room. That they hadn't brought me to this other place hours sooner is so far beyond me, I really can't think of anything else to say about it. That the doctors insisted I come to their hospital to use their machines despite the fact that there's a perfectly adequate MRI Imaging place in my own town is also beyond me. But after another long day at the hospital, I'm so fed up with their inability to organize a number line (you know, 1, 2, 3, 4, and so on), I'm ready to give up. If I had the option, I'd rather stand outside, walk underneath standing or propped-up ladders, and tie a bird poop magnet to my head than deal with them anymore. Unfortunately, I don't have that choice to make, and I'm at a loss for how to prepare myself for their lack of know-how with regards to their own jobs.

I want to treat people well. It would be foolish of me to expect that good karma at a casino will lead to good results but good karma at the hospital isn't just as important, or probably more important, considering that the results of the things that happen there really do constitute a life-and-death situation for me. It's damn near impossible, but I think that somehow I'm just going to have to try harder.

Monday, October 12, 2009

Anger and Sadness

Today I was angry. There's not a whole lot to it. I was just really angry. I woke up cold and nauseous, I had to go have blood taken, the car ride made me sick and I was angry. I came home, flopped down on the couch and fell asleep, and when I woke up I was angry.

I passed the day, muddling through interactions with my friends and family, but I just kept thinking about the way things are and it made me angry. I could tell I was taking it out on other people, but I just couldn't make myself care. I'm trapped in this nightmare and I can't run or take a break or get away from it because right now it defines me. I can't live or breathe like a normal person; I can't go find excitement or intrigue or anything new. I can't meet new people or have a job or go an entire day without feeling like I'm going to vomit and it makes me feel so empty. It feels like the one and only thing I have in my life is cancer, and god knows how badly I don't want it.

I don't expect life to be like a fairy-tale. I know it isn't. But I think about going through nine more sessions of this misery and I wonder if it's really worth it. I've already been through five rounds of chemo, and there are still nine more scheduled. I've never heard of anything that requires fourteen rounds of chemo! The sad part is, the pain I was enduring before I was diagnosed was so severe that I finally concluded life wasn't worth living if I couldn't figure out how to get rid of that pain. Now, the pain is mostly under control, but I'm hardly less miserable. I find myself asking whether I have it better or worse now than before. The objective is obviously to get rid of this thing so I can move on and be happy again, but it's so damn far away and nobody really knows if I'll ever get there.

I had a girlfriend up until a few months before my diagnosis. I know it's important to be able to rely on myself, and I don't ever want to depend upon someone else to determine my happiness. But at least when I had her, I always felt like there was one huge good thing that I had regardless of how other things in my life were going.

These days, I don't have much of anything except an empty stomach. I mean that literally and figuratively. And while I still believe she's out there for me, that special girl, I have no way of finding her. I can only sit here and hope she'll still be there when I can finally escape this interminable prison. Even then, nothing's guaranteed.

So, I'm angry. I'm sad. I feel helpless and frustrated and I don't want to go through any more chemo, let alone nine more rounds. The prospects of tomorrow look depressingly like those of today, but who knows? Maybe tonight I'll fall asleep and when I wake up it will all be gone. Like one big, terrible nightmare.

Sunday, October 11, 2009


Yesterday, I put blue jeans on for the first time in months. It occurred to me as I was slipping them on, unfamiliarly pulling up the zipper. It's not that I avoid wearing jeans, or any kind of pants with zippers or buttons, for that matter, I just hadn't since my diagnosis. Realistically, I spend all of my time either at home or at the hospital, so there just hasn't been any reason to wear anything other than comfortable shorts or sweat pants. I don't think it's a good idea to try to impress anyone in the children's ward, so I've simply opted for comfort.

Yesterday was also my twenty-third birthday. All week, I was tentatively planning on having a few close friends over. Nothing crazy because I still have to worry about getting sick, and obviously it all depended on how I was feeling. My good sense told me that three days removed from chemo I would still be feeling badly, but it was my birthday, so despite my better judgment I held out hope for something miraculous.

Just as I had expected, getting up yesterday morning was rough. Waking up is usually the most nauseating part of the day, and as usual it took me a while to force myself out of bed. I always have this unfounded hope that if I lay around for a while, letting myself fall into and out of sleep, it will somehow be easier when I finally decide to get up. Of course, it never is.

Sometimes, my body will adjust as the day goes along and the nausea that plagues me in the morning will dissipate over the course of a few hours. I kept telling myself that yesterday would be one of those days, even though I woke up nauseous and the following hours were nauseating as well. But it was my birthday; it just had to be one of those days.

I went along with the plans to celebrate, because, after all, I really deserve it. If anyone deserves a birthday, I know it's me. And since I was too proud to postpone the party to a day that wasn't my birthday, I made a promise to myself that I was going to enjoy it regardless of how sick I felt.

I felt sick all day. It just never went away, and though I masked it with meds, it didn't seem to get much better, either. But my friends came over and I think they had a good time, and I swear I didn't complain once about feeling sick. I didn't force myself to party too hard, and by allowing the joyful surroundings of the day to sink in, they eventually conquered my psyche and in the end it was a good day. It obviously helped to have my closest friends around, but I'm convinced that maintaining an optimistic outlook eventually overcame my inevitable physical struggles.

Though the party lasted all day, I hardly made it until nightfall. With these meds I'm taking, there's just nothing I can do to keep myself from fading, and it always ends in a nap. Yesterday, I think I managed to keep my eyes open until the last of the guests had left. Still, it was an earlier night than I had hoped for, especially on my birthday.

As luck would have it, today has been a much easier day for me than yesterday was. It's usually around this day that I cross the hump and start to feel better, but I was just hoping that the big jump would come a day sooner this time.

Everyone knows that a birthday only lasts one day. Though I may feel better today, there are no guests, no celebration. Like most other things in life, I don't get a re-do. I'll have to wait an entire year to do that again. It's frustrating and it makes me sad. There's just no way around it.

I never get overly excited for birthdays or holidays, it's just not my nature. I don't crave presents or new, shiny things, and like I said it's just one day and it's always over before you know it. I've had homework and midterms on my birthday, and in college it always fell during the week before basketball started so nobody wanted to party too hard and put themselves at a disadvantage for hell week. (Hell week is the first week of practice, which involves two-a-days and some of the hardest conditioning of the entire season.)

So, I always temper my birthday expectations. This year was no different, because in addition to my usual temperance, this year I have cancer. I don't know for how long, but for now and for this year's birthday I do, and it's a pretty good reason to moderate my birthday expectations. Nowadays, I can pretty much always expect to feel crummy, and that's not going to change just because it's my birthday.

But, like any other birthday, it was one day long and it's over now. I'm a year older and the day has passed, so I can move on. Next year is a whole year away, and I know how quickly things can change, so there's no telling the conditions in which I'll find myself by then. If I stay dedicated to my recovery, then maybe next year I'll be able to set my expectations a little bit higher.

Overall, I would call yesterday a good day. I may not have felt well, but for the first time in a while I had a reason to put on jeans and a reason to celebrate. I also learned a lot about the power of positive thinking, and how despite the most unfortunate of circumstances, good people and some chocolate mousse cake can really go a long way towards having a good time.

I will continue to fight, and I truly believe that next year the only reason to throw up on my birthday will be if I drink too much.

Wednesday, October 7, 2009


My nurse tonight is a nice guy who was sure we had met before, but for the life of me I couldn't remember meeting him. He told me it was a while ago, and that I had pulled the I.V. out of my arm in the middle of the night and walked out into the hallway looking for help. While it sounded like something I would do, I honestly didn't remember doing that. Eventually it dawned on me that it was the night I was awakened by a crisp popping sound, whereafter my vein started gushing blood because the badly-inserted I.V. needle had fallen out of my arm after three days of hanging on for dear life. I can see where he had gotten confused, though.

I'm not speaking for everyone, but in my experience the nurses here have been hit or miss with putting in my I.V. They all comment on how pronounced my veins are, which should make it easy to put the needle in, but while my veins are easy to find they are also "slippery." The first nurse to give it a try just stabbed me with the needle about seven or eight times before I said something like, "Dude, what the-- do you know what you're doing?"

Of course, he said, "Yeah man, I've done this, like, thousands of times. Just let me get it."

After maybe 5 more painful yet unsuccessful needle stabs I was pretty irritated and demanded that he stop. I made it a point to not let him be my nurse again, but other nurses struggled, too. It was the sloppy work of an "I.V. team" member that had resulted in my midnight river of blood. She was a specialist on the special team dedicated to putting in good I.V.'s, yet hers woke me up either from the needle falling out of my arm or by feeling blood streaming down my arm. I called my nurse and she patched me up, but nobody should ever have to wake up like that. If that woman had done her job right, I wouldn't have.

There was another occasion when I was undergoing a procedure as part of this vaccine trial in which I participated. Hopefully the vaccine, when administered at the very end of chemo, will give me a greater chance of fending off the tumor's return once we've got it into remission.

Anyway, this one part of the vaccine required that I have two I.V.'s going at once; one in each arm. The left arm was a normal I.V., but the right arm I.V. was done with a thicker metal needle and wire, which was much less forgiving of mistakes. Obviously, the left arm nurse couldn't successfully start her I.V. for a while. The right arm nurse had more immediate success, so we focused our attention at getting the left arm working correctly. That remained our priority until a mysterious sound from my right arm made me swing my eyes over, only to see that my vein had popped. That really is the diagnosis they gave me: a "popped vein." Not very comforting. They told me it would bruise and probably swell, but would eventually go back to normal.

To make a long story short, a 5-hour procedure turned into a 9-hour procedure, two I.V.'s turned into seven bandaged holes in my arms, and even then we barely got the blood we needed for the vaccine. Either I have weak veins, or the nurses are not as adept at putting in I.V.'s as they should be. Considering the number of quick and easy, successfull I.V.'s I have had over the course of my life, hell, over the past few months, my determination is that they leave something to be desired. I will say that the clinic nurses here have been very good at starting an arm I.V., so I know it's possible.

Just before participating in the vaccine, I had a port put into my chest, which has made it easier because now I don't have to deal with I.V.'s in my arm veins. The port is this small, plastic, circular device that sits in a small pocket in my right pectoral muscle. That's the chest for those who don't know. Anyway, the plastic ring has a jelly center into which the I.V. needle is inserted and through which chemo is given, blood taken, etc. The port also has a hollow plastic tube that extends up from the plastic circle and follows an artery up to my neck. Apparently, they need access to an artery close to the heart to efficiently administer chemo and other drugs.

There are doctors and nurses who come in to ask me questions on a regular basis and I usually have no clue who they are, though they always tell me when we've met and probably assume that I remember them too. I would never stop them to say I don't know who they are, so I just let them continue. Usually, they're just here to ask questions about how the treatment is going or they want to give me a checkup despite the fact that a nurse has usually done it twenty minutes earlier. Generally, I'm anxious to see them go away.

The point I'm trying to get at is that at the very beginning, when I was still on those really intense I.V. pain meds, I wasn't all there mentally and there's a lot I don't remember. My sister started writing down my funniest statements, so I'll have to ask her for the highlights. I distinctly remember announcing, "Two points for the drunk kid," after one of the funny things I said, though I was obviously not drunk. I also remember various phone conversations when I would doze off in the middle of talking, so when whoever I was talking to asked me if I was still there, I would be confused and ask what we were talking about.

"I don't know, you were the one talking," was the most common response.

I don't remember exactly when or what it was, but the doctors were giving me some medication that can make you hallucinate. It was right around the beginning of the first chemo, and I was anxious to get off the I.V. meds, so I was willing to go with whatever they wanted to try. Obviously, when they asked me, I told them I had no signs of hallucination, though I was tripping like a fool. Unfortunately, one thing happened that made my hallucinations difficult to deny.

I was having this dream where I was an actor in one of Adam Sandler's upcoming movies. The scene we were about to shoot required that I be a patient in a bed and that a dentist come to examine me. In my dream, I had walked over to the hospital with a few members of the cast, so naturally I was surprised to wake up all alone in the hospital room. I got out of bed to start searching for the cast and crew, but since I couldn't find them I thought it wise to pee in the garbage can next to the door before anyone else arrived. The bathroom standing ten feet away never even registered as an option in my mind. But as time went on and nobody showed up, I started to get worried and thought it best to go look for people.

The first person I found was the nurse sitting behind the desk in the hall, who looked up at me with immediate concern. "Is everything alright?" she asked.

"Yes, thank you," I responded. "But where is the crew?"

"Excuse me?" she asked. "What crew?"

"You know, for the movie," I said confidently. I was proud of myself and convinced she just hadn't heard of what was going on.

"Do you know where you are?" she asked very nicely, trying not to make the inevitable transition back to reality too harsh for me, I'm sure.

"What do you mean?" I responded.

"Where are you?" she asked, and I took a moment to really think about it.

I was not there to be in an Adam Sandler movie. I was there for cancer treatment because I have cancer and it needs treatment if I'm going to have a chance at getting better. It was hard to swallow.

The nurse accompanied me back into my room and I apologized for urinating in the garbage can. I also apologized for missing the garbage can a little bit. She was more concerned with making sure I was alright, and when I settled back into bed we said goodnight and she left.

I remember sitting up in bed that night, being particularly scared of what my future held. Really, I was scared that I wouldn't have a future. I've always wanted to know what was going to happen someday, and I admit that I didn't spend enough time in the here and now. Now, I don't really have a choice. I don't know what tomorrow brings, just like everyone else, but I have to take this one day at a time because it's the best way of doing it. Tomorrow I might feel crappy, so I get through that day, maybe by looking to the next day. That day I might feel good, so I'll enjoy feeling good that day and try not to think about the day after that when I might feel shitty again.

The point of that last story was to show an example of how there are so many people here who say they know me but I simply don't remember meeting them because of those first few weeks. But I want to remember the people I meet here. While some are difficult to deal with or leave something to be desired in the way they interact with their patients, there are also a lot of great people here. There are brilliant, funny, interesting, caring people working here and I'm not going to miss that by focusing on the idiots. People really can surprise you.

Eventually, I will regain the opportunities I had to enjoy more things. Maybe, eventually, I'll get to be in an Adam Sandler movie and it won't be a hallucination.

Monday, October 5, 2009

Good News

I just got a call from the clinic telling me that my blood levels are high enough for chemo tomorrow. They also told me that my platelets are in the same range as that of a normal person, which means that my body is making bone marrow. My platelets have more than quadrupled since the first chemo. It was my bone marrow that was being attacked by the tumor in the first place, and that's how it was found in the MRI.

It was such a relief to hear that news from the clinic. It seems like all of this suffering is actually paying off. So far, I'm responding to the treatment, and I know better than to take that for granted. I've been told that there are plenty of people with my disease who never respond at all. The tumor just never recedes, no matter how much chemo they receive. I don't know what that would mean, but I hate to believe it means they just don't have a chance.

The fact that this tumor is so unpredictable still scares me. I'm afraid one day the progress I'm making will suddenly stagnate and the tumor will just stay where it is. And even if it goes into remission, one of the problems with this tumor is the frequency with which it returns. I'm not even rid of it and I'm afraid of it coming back. Pretty ironic, huh? I guess that's just something I'm going to have to deal with. Priority number one is still kicking its ass right now, the first time.

I hope that fear only remains with me as a reminder to cherish every day I have as a gift. I know I was never the best at doing that before, but living every day in fear is certainly inspiration to change your way of viewing life. I've said before that fear is only what you allow it to be. If you let it become more than an unnecessary distraction, it can get in the way of life's enjoyment. That's not what I want. Everyone fears the unknown to some extent, but it's just like the "why me?" question; if I sit here wondering whether or not this thing is going to come back, it's only going to bother me and, again, I will never find an answer. I must know better than to do that. I have to do my best to focus my energy on the battle I'm fighting right now. Everything else is simply out of my control, so I'll leave it at that.

Today is a good day. The news from the clinic was fantastic, so I'll celebrate today as a good day. Still, the day before the next round of chemo is always bittersweet. Since it's the day furthest removed from the last chemo, it's the best I get to feel. It's the closest I ever get to feeling like myself. I also know how tomorrow's going to make me feel, and I dread waking up in the morning.

Nevertheless, I know I'll be there and on time for chemo tomorrow. No matter how difficult it is or how terrible I feel, the one thing that never fails is that time will always pass. Though slowly and sometimes painfully, nauseously and sometimes dizzily, time will pass and I will persevere until I reach the next day-before-chemo and I will feel this good again.

I keep telling myself that each round I will get stronger. After this chemo I'll recover faster than last time, throw up less, maybe take less morphine for the pain, pee normally, and set a better example for others than I have in the past. I know it's chemo and it's unpredictable, but it's the day before the cycle starts all over again, so for right now I've just got to believe.

Friday, October 2, 2009

These Are My Demands

I know that I've already shared how frustrated I can get with the hospital staff, and I'm aware that it reflects my impatience with them just as much as their shortcomings, but in my position I feel every right to demand certain results. When the pediatric E.R. knows I'm coming in an hour before my arrival and I need something very particular, I think preparations should be made to give me what I need in a timely fashion. The last thing I want to do is spend any more time in the hospital than is really necessary. Let's be honest, I only get so much time in between rounds of chemo, and even less of that time is spent feeling good. It should go without saying that if I'm in the hospital, I don't want to be there. Nobody does, I know, but get me in and out as quickly as possible. If I'm only peeing in a cup, you don't need to leave for half an hour. It doesn't take anyone half an hour to pee in a cup. At least I don't think it does. A little more time efficiency, that's what I'm asking for.

I'm only half referring to my Neutropenia incident. Unfortunately, I spent the entire night in the emergency room two nights ago. Clearly, I wasn't thrilled about it, but this time the reason is a little bit more embarrassing than the first time and I'm a little hesitant to talk about it, so bear with me.

For some reason, chemo seems to heat up all my insides. When I burp, it's a full body experience. Everything shakes like my own mini-earthquake, and I blow hot air like some kind of dragon. It's a surprise to me I can't yet spit fire. But in addition to that, I get these stomach aches that feel like the lining of my stomach is burning. I don't have proof, but it's just what I think and it's part of my explanation of what happened the other night. The fact that I receive hours of fluids every night after chemo to protect my bladder is one thing working in my favor.

Anyway, the other night I noticed a wee bit of blood in my urine. Peeing had been slightly painful for a day or two, but like all my other little ailments I attributed it to the chemo. Still, I don't think I could ever really be mentally prepared to see blood coming from there. I apologize for the obvious gender bias to that statement, but it shocked the hell out of me and I was, to speak plainly, freaking out. Still, the last thing I wanted to do was go to the hospital. It was clear to me that the chemo had somehow caused some kind of small cut down there. I called the clinic to be safe, and they told me that as long as I was feeling alright I didn't need to worry, but that the next day when I went to get my blood taken I should have a urinalysis as well to rule out any infection.

Five minutes later, they called back to tell me I had to go to the emergency room.

I'm convinced that everything could have been done so much faster once I got to the E.R. They brought me in immediately, which gave me false hope, because the next thing I knew I was waiting again in some tiny room as if I had come to see some fancy, expensive doctor. It took forever for them to bring me a cup, and then to come back and get it, and then to access my port so they could give me the fluids that took forever to hook up to the wires that hung from my chest all night as I cursed the sky (ceiling, really) from that familiarly uncomfortable, thinly padded wooden table.

After nine and a half hours of Animal Planet, which I must say had some damn good programming, I gave the nurse a urine sample that was blood-free. If you ask me, I was ready to do it hours earlier, but they didn't ask.

Yesterday, the pain was still there and with close examination I confirmed that my suspicion actually was the case. I called the clinic to ask what to do, and the doctor to whom I was speaking obviously had to rule some things out. She asked me if I was sexually active. I told her "I wish." She continued that my culture had come back negative for infection, so the best explanation for the discomfort was, in fact, a small cut, and that I should put some cream on it.

The frustrating thing is that I could have told her the problem to begin with. I didn't have to go to the E.R. and spend all night getting those fluids to flush my system. They had to rule out hemorrhaging, though, which I guess is a good reason to have me come all the way there. It's just that, like I said, I don't get that many good days and the last place I want to spend any part of them is the hospital. Thanks to chemo, though, which is both my savior and my foe, I have to do plenty of things I don't really want to do, like pee blood.

So I wish I could demand more time efficiency in the E.R. Very wishful thinking, I know. Furthermore, when I'm ready to come in for chemo, I think they should be ready to take me. It's why we plan it in advance, isn't it? The nurses have already figured out who on my team is working the days I'm scheduled for chemo, and that's how it's never a surprise to them when I show up. There's usually a friendly face ready to greet me when I get up to the floor, which is something I really don't take for granted. It's always a refreshing moment in a painfully annoying process. It's always after I've spent hours downstairs in the clinic, waiting to make sure my blood levels are acceptable or "getting a head start" on the six hours of pre-chemo hydration because my room is still being cleaned from the last patient. So, again, I never take a friendly face for granted.

That said, I'm not afraid of letting people know how I'm feeling. Sitting here, I realize you're probably aware of that already, but it leads me where I'm going, so I state the obvious. If I need to get something off my chest, off it comes.

The first time I went in for my five-day chemo, I was truly anticipating a single room. It had not even crossed my mind that I might be sharing a room with someone else for five days. Now, it's not that I can't coexist, I've obviously had roommates in the past, but when I'm in for chemo I really like having my own space. More important than having my own space, however, is having my own bathroom. Judging from experience, there is nothing worse than sharing a bathroom in the pediatric oncology ward. For one thing, the other patient's parents will probably have no problem using that bathroom, though they're not supposed to. For another thing, the other patient and parents will probably have no problem peeing all over the seat and the floor without feeling the need to wipe it up. I know I've boasted the convenience of the plastic urinal, but not everything can be done in the plastic urinal, and it's really not fair for me to have to wipe up someone else's pee in order to use the toilet in my own hospital room. Nevertheless, I've done it.

So, you can probably imagine my disappointment on this day when they brought me to a double room. Honestly, I was really pissed off. I was about to be in there for five straight days, and I expressed to the charge nurse my extreme preference for a single room. She, of course, told me that there were none available and likely wouldn't be for at least a few days. Unfortunately for her, she also said something else.

"I know how you feel," she said.

The first time she said it, I didn't really notice. I was visibly upset, and she had immediately gone defense mode on me. I continued to explain to her that since I was admitted for such a lengthy stay, it was really only fair for me to have a single room. And, standing in the double room they had given me, it was easily noticeable that behind the other curtain, my roommate, was none other than a crying baby. As you know, I love crying babies.

"I know how you feel," was the first thing out of this charge nurse's mouth in response to everything I said.

After a while, it really started to bother me. In fact, I thought to myself, "what's the most obnoxious thing you can say to someone with cancer, unless you've ever had cancer yourself?" If you guessed, "I know how you feel," you're exactly right.

Finally, after about the eighth time she said it, I interrupted whatever waste was subsequently falling out of her mouth. "Please don't say that to me again," I said, looking her straight in the eye.

She immediately adopted a more considerate, less dismissive tone, but it really took until that moment for her to stop acting like I was being an imposition on her and to take my request seriously. More importantly, I suppose, is that she didn't say it again.

It took two days for them to find me a single room, but the last two times I've been back for chemo, they've brought me straight to a single room. I don't want to say I hope it was a lesson learned, but I will say that I hope the trend continues. Furthermore, I will make a conscious effort to be more patient with the nurses. Being demanding may get me results, but maybe karma will keep me out of the E.R.