Monday, January 25, 2010


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.

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.

Friday, January 15, 2010


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!

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

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.

Sunday, January 3, 2010


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.