Monthly Archives: April 2014

Benefit Events

MF 3I wish I didn’t have to put up posts like this. I wish I didn’t have to advertise benefits for myself or for others…but there are a lot of things I can wish for that I won’t get. So the best I can do is make the most of the circumstances and try to turn problematic situations into something more valuable to others. With that said, there are two benefits I want to bring to your attention.

The first is created by my friend, Melissa Neufell, who is currently thriving through a rare salivary gland cancer, going through radiation treatments post-surgery and doing her best to stay active through it all. She has a gofundme site that is raising money for the local (to Indianapolis) organization, WorkOut Cancer, which seeks to fund studies that measure the effects of physical activity on cancer remission. Please visit the following sites to learn more and contribute to the fundraiser.

Thriving With Cancer

WorkOut Cancer

The second is my own More Fire Run that I mentioned in a previous post. The More Fire Run event will raise money to help me stay on top of finances after my second surgery this August. The HIPEC surgery (affectionally called The Mother Of All Surgeries) is the hardest physical difficulty I’ve ever had to endure, completely wiping out my physical strength, but also making positive and inspired emotional moments hard to capture. I will be physically useless for a while and so these funds help me pay my mortgage, utilities, buy food and support my son. Some of the specifics for the event are described on the event page, but I’ll be posting updates here as the date nears. For more information and to register/donate for the run, please visit these pages:

More Fire Run

More Fire Event on Facebook
More Fire shirt design1

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Carmel 8k – Race Report

Let me first say that I’m taken back that I’m even writing a race report today. I was initially planning on cheering Laura during her first Indy race event, but as my physical abilities remained somewhat consistent, despite always compromised, we were able to get in a handful of days of outdoor running…leading me to sign up the day before the race. So no matter how things went today, it was going to be awesome regardless…and I’m psyched just to write this.

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Cancer or no Cancer, competing or just running, race morning is always the same. The night prior I woke in the middle of the night, hungry and restless, followed by sleep further disturbed with anxiety dreams that involved missing the race start because I had forgot my shoes! Upon waking, however, everything continued as planned. Coffee was consumed and bathroom stops were plenty. Admittedly, the only thing missing were the prior days of stomach butterflies and race line jitters that usually have me on the edge of adrenaline overload. I was more concerned with how my heart rate would feel during the touch of effort and, more so, how my feet were going to hold up with each successive mile.

The night before the race I was doubting my decision to register and feared what the Hand & Foot syndrome would have done to my feet overnight by morning. Add to that concern some very real, albeit small, blisters, and my only goal for the race was to finish. But…of course…the fire doesn’t die. So, internally, I had given myself the HOPE that I could run the distance (5 miles) under 7:00 minute miles. That seemed fair and a little reaching considering how LITTLE running I had done prior to the race, how my feet felt on the start line, and how difficult it was to hit that time on just normal “training” runs. Still…ya gotta have a goal or two, right?

Instinctually, I started going through the pre-race motions, because I really didn’t know what else to do to pass the time. Just stand there? That’s weird. I did some warm ups, dynamic stretching, a few run outs and just hopped around until the countdown began. It felt a little weird being suited up to race after openly stating that I was just going for a little faster run than normal. But once a racer… Plus, it just FELT right. It’s been so long that I’ve had the opportunity to be a competitive runner, so at the very least, it just felt good to pretend I was my old self again.

A few minutes later the race was about to start. I gave good luck to Laura, turned toward the course and waited as the countdown began from 10. At “One!” I pushed into the course along with the line of elites and teammates standing next to me, all filing into our respective places in relation to our pacing. Surprisingly, I felt strong and relaxed into the straight and my heart rate stayed subdued as we took the first turn towards the city center.

Moving down the road I was tucked back in a line of fast, competitive runners, two of which passed me immediately, my breathing slightly labored and my feet tenderly hitting the ground sending expected bursts of discomfort through my senses. The initial adrenaline moved me forward at a pace I seriously doubted I could hold and subdued the foot pain that would inevitably grow with each passing mile. Turning up the rail-trail we stayed in formation, no one moving ahead and no one coming from behind…surprisingly. I expected to get rolled by a group of conservative starters, but was somewhat relieved when the disheartening herd never showed. Just then I looked up to see the 1 mile marker.

I hit my watch. 6:11 pace. “Oh man. That’s good…probably too good.” I thought to myself, remembering that I just wanted to stay under 7 minute pace as a general goal. This was ambitious considering my physical state and considerable LACK of training. As in no training. As in just a handful of encouraging, outdoor runs. But by then, the rhythm had been set and I had to keep in time with the metronome of my ambitions until I fell out of sync and everything fell apart. I just hoped it would happen at the end of the race and not any sooner.

Just as we turned onto another road past the 1 mile marker a familiar faced runner turned to me and said,

“You’re Scott, right?”

“Yeah.” I squeezed out in between breaths.

“Hey, great to see you out here man.”

“Thanks….I really…appreciate that.” I replied with as much genuine tone as I could muster in my winded state. I thought about making a self-debasing statement, about how it didn’t FEEL so great…but figured I should save my breath.

We moved down the road, which started to undulate a little bit, a female runner just a few seconds ahead and no one coming from behind. On the inclines I was surprised to find a little strength in my legs and made up some ground on the female runner, who inadvertently pulled me along and kept me reaching for more ground. We continued on in the course and my breathing remained labored, as if I was nearing the end of a speed workout when all systems are becoming taxed, but never got too out of control…which surprised me.

Our positions stayed the same as we ran down an on-ramp decline and onto a slowly rising three lane road. I tried to make up more ground on the female runner ahead of me, but started to really feel the weakness in my legs, as if they couldn’t be lifted much higher and were unable to bound me off the ground with each stride. I was consoled, however, when a younger, more ambitious runner who went out too fast at the start was dying hard at about the halfway point, quickly falling back as I ran by him on the off-ramp incline.

We crested the incline and turned towards the switchback that would bring us back into town down a long finishing straight. I missed the second and third mile markers, but was running on physical abilities, not per mile goal paces, anyways. Passing the third mile I really started to feel the strain of my training deficit, struggling to keep my breathing under control, fighting against the weakness in my legs, and compensating my stride for the increasing pain filling in my shoes. This sort of pain isn’t the kind that diminishes over time, but is actually aggravated and increased by friction, meaning each mile was only going to get worse. Add wafer thin racing flats to the mix and I knew I was just trying to get to the finish before the pain broke down my resolve to run as hard as I could.

By this point the female runner had moved even further away and I found myself staring down another runners back after the last switchback before mile 4. But there it was, the mile 4 banner waving a message of relief to me, knowing the next 7(?) minutes would pass rather quickly with anticipation of the finish. I was winded, struggling to control lungs filled with the pain of exertion. My feet hurt from the constant rubbing and repetitive slapping. My legs were just swinging with muscle memory by this point…but there was a runner ahead of me and I couldn’t help but wonder if I could catch him before the finish. We ate up the ground towards the finish and reached the final block surprisingly quickly, unfortunately, the draw of the finish line spurned him on as well and he moved slightly away from me the closer we got to the line. No matter, the relief of my race ending was just ahead.

I crossed the line, hit my watch and stumbled forward to the finishing chute, suddenly fighting back a surging in my throat. I couldn’t slow down my breathing quick enough and another surge came forward as I put my hands on my knees. And then another. A volunteer called over to me.

“Scott…do you…need anything?”

I sat down and waved her off, “No…I just need a second. Thanks.”

My heart rate finally dropped to a manageable degree and the near wretching subsided. I don’t know if the dry heaving came from a long ignored level of exertion or the crowding in my stomach from cancer, but at least I know I couldn’t have run any faster than I did. That was satisfying in it’s own sort of way.

After finding a moment to relax I checked my watch. 31:34 for a pace per mile of 6:21. WELL under the arbitrary 7:00 I set for myself. I was suddenly more than just pleased…I was pretty damn excited….considering, well, everything. I later found out that was good for 23rd place and 3rd in my age group. I’ll also assume that was first in the non-existent “cancer group”.

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The fire grew stronger today, much stronger. And it wasn’t even just my finishing time. The opportunity and ability to put my racing singlet back on, to tie my racing flats (but not too tight!), and to go through the motions of a competitive runner again proved to be a lot more important to me than I realized in the moment. Granted, a 6:21 pace used to be my easy run pace…but as I always say, “it’s all relative” and right now everything is EXTREMELY relative in the face of cancer.

Even more, today’s race was like taking back a little moment that was lost from me when I was forced to miss these races last year. This was the first race that my cancer diagnosis forced me to watch from the sidelines, cheer on my teammates and fight back the competitive urge that consumed me all morning. It’s been just over a year since diagnosis and so to be able to be back and running (even just for this race), despite my continued treatments and unresolved “cure”, is pretty huge for me. To me, it was something of a physical expression that I haven’t just thrown out running, that I haven’t let cancer remove that part of me or remove that act from my life. That fire still burns.

Then finally, to be able to hang out with my teammates, to talk about our race performances, to joke with each other, to scream in our other teammates still on the course…to be able to share my OWN performance thoughts instead of just hanging around in solidarity was the best feeling all morning. It felt immeasurably great to give my coach a quick rundown after the race, and to just BE a part of the team again. That, above all, was my greatest reward today. And that grew my fire even more.

Everything is still so precarious at this point that I make no assumptions on what is to come…but for now, I’m going to hold onto this moment and see what lies ahead while I live through the months leading to my surgery. I hope to be able to offer at least one more race report.

More fire. Always. More fire.

(PS – this was Laura’s first attempt at the 8k distance and her first Indy race as well. She ran well under her expected abilities and it’s safe to say her own fire grew a little more today too. It was awesome being able to share our experiences together and I look forward to plenty more of those.)

Mutual Benefit Run

Just over a year ago I had advertised my cancer diagnosis via social media, only to be flooded with support and encouragement (physical and emotional) from friends and strangers, which continues to this day. Initially, I had a very difficult time accepting the assistance, my self-reliant stubborness and attempts to burden others as little as possible remaining at the forefront of my motivations, but as I’ve detailed in previous blog posts, I let this fall to the wayside for good reason. Little did I know, post-surgery, I was going to need an incredible amount of assistance from others – physically, emotionally and financially. Suffice to say, the support I received from others (most of you reading this) kept my life intact while I was essentially bed-ridden from the invasiveness of the surgery, and I’ll never be able to express my gratitude for that assistance fully. Over the past year since then, I’ve tried to be a force of positivity and motivation for others, to repay as much of that encouragement I was given…but always with the hope that I wouldn’t need any further assistance. I just wanted to put that need behind me.

But…here we are again. A year and a half later I will be entering the same gutting surgery again, getting a matching absurdly long incision down my stomach (guaranteed to lose my bellybutton this time), and hopefully getting as much cancer (all of it?) out as possible, extending my lifespan into, as my surgical oncologist put it, “many many years”. As hopeful as that all is, the reality of the surgery and the complete physical destruction it entails can not be avoided. My life, come August 12th, will essentially stop again. I will be kept alive by machines for days. I will have tubes threaded in and out of my body, collecting and dispersing fluids through my systems. I will lose weight and strength. My body will react in ways that are downright alien. I will, to put it bluntly, enter a world of hurt. And that world of hurt will remain for months as my body slowly builds back from this latest trauma. The suppressed and overshadowed mental scars and “smaller” difficulties of the first surgery experience have been rising to the surface of my memory with each passing day.

But my body will build back.

And this time I’ll have the direct support of my girlfriend with me on a daily basis. I’ll also have the potential to keep working during the vicodin-enabled moments the pain subsides and my spirits lift, as I’ve begun building my freelance design/writing business, in part to prepare for this surgery potential. So there will be some positive differences, but that doesn’t completely quell the concerns I have about my daily activities coming to an abrupt halt….which brings me to the focus of this post.

To put it simply, I’m still quite concerned about my financial state post-surgery and I need to lay the groundwork now to keep things intact as my body heals and recovers. I certainly don’t expect another benefit to be held on my behalf, and my stubborn resolve has also recovered to the point that I don’t necessarily want one either. That doesn’t, however, change the reality of my financial circumstance, and so with that in mind, I’m throwing my own benefit. But I hope to organize it in a way that will equally benefit everyone who participates. Hear me out.

I’m going to host a “benefit fun run” (1. I’ll rebrand this with a much cooler name later 2. unfortunately, – or fortunately – this will not be a race…just a run). I’ve JUST pulled this idea together, so the specifics will be fleshed out as we move along, but I want to get the ball rolling on this as soon as possible to make this as cool as it can be. I’m not one to just mimic previous models and so hope to bring something really unique to this event. I want this to be a celebration of living, first and foremost, but I also want to offer everyone who runs/contributes some really cool items in return. There won’t be “swag bags” of useless product samples and flyers to pitch, but rather, personal items such as mix-cd’s, artwork, coffee certificates, etc. etc. etc. I plan to have limited apparel available, but also branded sports towels for everyone. Everyone who contributes will get something aesthetically nice, useful and infused with a personal touch. Again, I’m just pulling all this together, but the format will be as follows:

– Sunday, August 10th, Indianapolis
– “Alley cat” style run (no permits, no blocked streets)
– Various distances along the Monon trail & Canal Tow Path
– Water stops available
– Donation only (contribute as little or as much as you feel compelled)
– Branded items for everyone who contributes
– “Sleep-in” category (contribute, even if you don’t show up)
– No awards
– Useful “swag bag”
– Apparel available
– All prizes available to participants
– Post-run food/drink/hangout
– Etc. Etc. Etc.

I planned this run on a date that won’t interfere with other races around that weekend, and although it’s cutting it close to surgery (1 day after my birthday and 1 day before I check in to the hospital), I’m sure we can pull this off given the time to prepare. If you want to help out in any way (spreading the word, volunteering, etc.) or are a business that wants to help contribute and make this a really fun event, please feel free to get in touch.

In the meantime, I’ll be reaching out to individuals and businesses to make this run as successful and fun for everyone involved as possible. I’ve always wanted to give back to the running community in some way, and this is as best I can come up with at this point. I hope you’ll be excited to take part.

Again, I want to express my deepest appreciation for everyone that helped me out a year ago…I don’t want to think where I would be today if I didn’t have your support…and although I, unfortunately, may need assistance yet again, I hope that my efforts can benefit you just as much in return. I really look forward to giving back as much as I can before I enter surgery, then come back out of it and get to running with you all again.

Thanks friends.

To get in direct contact with me about this event – morexfire@gmail.com

1 Year “Eh”nniversary

365 days. 14 infusions. 875 chemo pills.

Numbers and numbers and numbers, which mean only so much. Still, today is an anniversary (my diagnosis of cancer anniversary), in that we have designated 1 year as an arbitrary measure of time and importance, to mark a passage of…something…experiences I suppose. And although I feel very little emotional weight with this anniversary, it does mean something, because it’s an impetus to reflect, to think about experiences that have come to be in the past 365 days since my cancer diagnosis.

But if I’m being blunt…my whole perspective on today’s anniversary is just…”Eh”. Like, it’s just another day of living with/through/against cancer. 365 is just a number, except…that it isn’t necessarily JUST a number. It’s a streak of experiences. It’s a demarcation of change. A measurement of how I’ve lived through this separation of 366 days ago to 365 days. 366 days ago I was confused and annoyed. 365 days ago I was briefly stunned. But only briefly. There was work to be done.

And maybe that’s why I’m so “eh” about this whole cancer experience to this point…because right now I’m doing pretty damn good considering. I mean, after diagnosis, everything happened so quickly that I didn’t even have time to consider what was going on, to be afraid of cancer. I only had the logistics of rearranging my life and preparing for surgery and what was to come. And after surgery, even after things didn’t go as planned and this became my “indefinite” life, I continued on. Ultimately, cancer has never scared me.

It has brought me to dark places, welled up tears within me, and draped me in an apprehension more for my son than myself…but I was never scared. Cancer has never gotten to the point where I FELT it’s power. And for that I am VERY fortunate. That isn’t to say it’s been a minor annoyance. Not by any means. The power of chemotherapy has kept me on a swinging pendulum of physical discomfort and temporary relief, sometimes allowing me to be very physical and active, while other times leaving me barely able to walk.

But that pendulum continues to swing and cancer just hangs there in the balance, barely noticeable beneath the toxicity of chemo.

To express it succinctly, even through the worst of these 365 days, my life is pretty great right now…even better than where I was pre-cancer. I have a wonderful significant other who has brightened my days and given me great comfort. My relationship with my son continues to grow deeper and deeper. I have finally taken the leap to pursue my design and writing career (with success…so far). I’ve been surrounded by the love and encouragement of friends and strangers alike. I have met and interacted with so many inspirational and fascinating people around the world who have been drawn to my story. And ultimately…I have continued to live with the same intensity and passion that filled my days even before diagnosis.

My only lingering frustration at this point is my inability to get back to my running strength. My feet are still consumed by the compromising numbness and pain of neuropathy, limiting my episodic streaks of daily runs to around 4 miles before the pain becomes overwhelming. But hey…right now…I’m running. As a matter of fact, I rode my bike to the gym this morning and ran for the 4th day straight, then rode back home, with plans to get in some trail running tomorrow. That’s a pretty rad victory for me right now and I can’t think of a better way to mark this anniversary.

I just don’t feel like I’m dying. Chemo is working. My lifestyle is working. And with a second surgery on the distant horizon come August 12th, maybe we can put all this behind me. Maybe. But in the meantime, I’m continuing on as I always have, adding days and days on top of the 365 that have passed to this point.

But those are just numbers. It’s not that I’ve ticked off 365 days on my calendar, but that I have continued to try and BETTER each one as it comes, to give back the positivity I’ve received from others, to live life as best I know how through each one.

In the end, however this cancer experience plays out, I can at least know that however many days I crossed off on my calendars, however many “eh”nniversaries I celebrated, however many infusions, pills and surgeries come my way, that the numbers were outshines by the experiences I created and discovered along the way.

In the end…that’s all that matters.