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.

—————————————

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”.

——————

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.

A Second Wind(fall)

Today was the second follow up appointment with my surgical oncologist, almost one year since diagnosis (April 4th). My dad came with me as has been the routine from day one. Prior to the meeting I expressed my expectations to him, how I assumed my doctor would have looked at the recent scans and will simply tell us that surgery is not an option. Very matter of factly. Straight forward. Then send me on my way to continue my ceaseless routine of chemotherapy infusions and pills, just waiting for the cancering process to either give up or find a loophole to exploit itself out of control. I was emotionally prepared for this.

As is protocol, we sat in the exam room with the doctor’s “Fellow” who briefed us on the matter at hand, getting his practice in before the doctor took over. I’ve learned not to put much emotional stake in what the Fellows tell me, as their knowledge of my predicament is both secondary and very limited. They often read my file, it seems, moments before they meet me. This fellow, fortunately, seemed a little more knowledgeable of my situation and did a decent job explaining the potential for follow up surgery and what this might mean for my life, but to be totally honest, i’ve retained very little of what he actually said. I do remember one quick exchange that went like this,

“So, how long is Dr. Gupta giving you chemotherapy?”

Me: “Umm….indefinitely.”

“Oh. So forever.”

My entire insides cringed at his inadvertently unsympathetic phrasing. “Forever.” I thought to myself,

“Come on man…let’s use a different term. I mean, I’m going to die SOMEDAY, so I won’t have chemotherapy FOREVER.”

Admittedly, if there was such a thing as hell (don’t worry..there isn’t), a lake of fire would probably be far preferable to an eternity of chemotherapy. The “Good Book” needs a little updating to it’s disincentives.

Anyways….after the Fellow left, I felt a little dejected, staring off into nowhere and waiting for the sense of dread to pass, the realization that if a surgery does take place…it’s probably just one of many, and so I was left with a lot of questions.

A few minutes later my surgical oncologist walked in, a man who I greatly enjoy, despite our brief interactions. He is pleasant, energetic, kind, genuinely positive and hopeful…and still wears bow ties. Of course, cancer doesn’t care about any of that, so I wasn’t sure how HE was going to convey my options, despite my previously stated assumptions.

He walked in, exchanged greetings, and then before he even made it to sit in his chair he said,

“Well, you’re a tough one! I’m VERY PLEASED with what I’ve seen.”

He continued to offer praise regarding my situation, how I’ve responded to the surgery, how I’ve handled the chemotherapy, how my CANCER has responded to the chemotherapy in that it has held steady. It’s a lot of what I’ve heard before. That my cancer isn’t growing, although it’s not shrinking. He also commented on my physical appearance, that I look good and have gained weight, which admittedly, struck a runner’s nerve with me. I concentrated on my weight for so long, always hovering just above race weight, that adding enough mass to be noticeable doesn’t sound like a GOOD thing to me…though I know it IS a good thing in relation to cancer. Then in more vague terms, he reiterated a sentiment he let on to in the past…that he didn’t think I was going to do very well after surgery.

He expected the worst. I don’t know if he expected me dead by now, but he certainly didn’t expect me to be thriving, or to have a hopeful outlook into the coming years. Mind you, this negativity wasn’t a judgement on my abilities as an individual, but rather related to what he saw when he opened me up. He admitted to being “bummed out” when he went in and actually met the cancer mano y mano. He explained it this way…

“Many patients with your type of cancer have a lot of cancer mucin floating around that can be easily removed, where yours was as if someone poured a bucket of concrete into your stomach.”

That is what caused the problems. It wasn’t that I was ravaged by tumors…it was that my cancer was taking hold in my abdominal cavity and not letting go, severely hampering his abilities to take it out without causing severe organ damage, which prompted the chemotherapy regimen, to hopefully reduce the tumors and make a future surgery easier for him. But then again….he didn’t think a second surgery would be worth it. He didn’t expect me to last this long (I guess) or that my situation would have spiraled out of control. I don’t know….but I do know this…he followed up some of this explanation with this statement,

“I’m going to recommend surgery again.” (and I paraphrase) “I think because you are doing so well, because the tumors are not growing, because you only have a little accumulation of fluid, that we can go back in and take out more. I actually think there is a possibility we can go back in and get all of it.”

Yes, he said ALL of it.

“I’m hopeful that we can get more of the cancer out, to chip away at what was left behind, that maybe the chemotherapy will have worked to a point that it won’t be as difficult to take out this time.”

And so on.

To be honest, I may not have shown it, but I was taken aback. Remember, I was sure he was going to plainly state that surgery wasn’t even a consideration and send me on my way…so to be given so much positivity and encouragement, even a very quickened timeline to get wheeled back into the operating room, well, it took some time to process. IS taking time to process.

The encouragement, the hope and positivity, it was infectious and I had to temper my emotions. I had to stay level. He DID say “ALL of it.” But he also said it with reservations.

So let’s scale back a bit here. If I had to gauge my situation as it stands and everything that was told to me during our meeting today, I would say we are still squarely on the side of losing to cancer, that eventually cancer is what will kill me (short of getting creamed by a car while out bike commuting). The positive side to this is that it’s going to take awhile. If I’m able to continue this trajectory of strength and a relatively high quality of life during this process, that these surgeries will do a great deal to extend my lifespan into the foreseeable future.

My oncologist used the phrase, “Many, many, many years” a few times in our discussion. He referenced other patients with more tumors than myself living 10 years out, some possibly even further because he hasn’t heard from them in so long. This is tempered, however, with the patients that come back every year or every two years for additional surgeries because they are experiencing growth and blockages that are threatening their quality of life and existence, period. But, despite the “bucket of cement” scenario he dealt with the first time, he still feels that this surgery will have SOME level of success and that my prognosis is that I will live many, many years out. Maybe supplemented by chemo. Maybe not. I’m not quite sure about that yet.

There is, obviously, great cause for celebration in this, but I’m not letting go completely, because, to be honest, I have never felt like I was dying anyways. When my body revolted at the last second prior to diagnosis, I didn’t even have enough time to consider that I was on the verge of dying to some degree, because I was instantly pulled into the world of surgery and post-surgery recovery. And through all this recovery and chemotherapy, no matter the problems I continue to experience through the medicine’s side effects, I’ve still never felt like I was dying, like I had a foreseeable end to my lifespan. Hell, I’ve just been looking to when the side effects dwindle to the point that I can start running again.

So, although I’ve never felt like I’ve ever been dying (I’m still in “thrive” mode), I’m bolstered by this idea that, even with the complete destruction I’ll experience through this surgery, I’ll have an indefinite timeline to live through. I’m bolstered by the realization that even if we don’t “get it all” this time, we will have reduced the crowding in my stomach yet again and I can expect…if all goes well…an increased quality of life yet again. I’ve got a second wind, so to speak. I’ve got “Many, many, many years”.

Trust me, I plan to continue making the most of them.

For now though, surgery has been scheduled for August 12th. He initially suggested I go in sometime in May after he returns from an overseas conference, but he explained that because my cancer is slow growing that it’s not imperative like it was last time, that we can wait if it’s easier on my life. And it is. I’m going to take this time to 1. process what is about to happen 2. prepare for the downtime financially 3. establish the life Laura and I are about to build here in Indy and, most importantly, 4. get every day of visitation time with my son this summer. Then after sending him back home, I’ll get wheeled back into that operating room and repeat that complete physical destruction yet again….in hopes of an even greater recovery this time and many, many, many more years of passionate living.

Whew…things sure change quickly. Let’s do this.

More Fire.

Layers of Discomfort

Cancer is hard to feel through the chemo. I’m often so physically consumed by the discomfort of chemotherapy side effects that I forget about the cancer. It’s there…somewhere…but doesn’t really make itself known. And that’s somewhat scary, because I feel deluded into thinking I’m better off than I might actually be. I have to remind myself that I probably had this slow growing cancer for a LONG time before it really made itself known, remaining highly functional all the way up to the point it apexed.

The chemotherapy, however, doesn’t hide. I should probably talk less about having cancer and more about having chemo, because that is what really prevents me from living my life at this point. I’m keeping an eye on the big picture, but on a day to day basis, the effects of chemo are what I’m really trying to battle. And sometimesit truly feels like a battle, where I try to make advances but find myself being held back.

The best way I can describe the fight against this discomfort is like peeling the layers of an onion.

I pull away one layer of discomfort, only to find another just beneath it. At times it feels like I get rid of a greater discomfort, which allows the lesser one to then make itself known, and I peel that one away to find yet another and another and another. At other times it feels less like exposing lesser discomforts, but instead pulling away one layer only to find a brand new layer growing in its place.

As I try to keep pushing towards that point where I can live my life as close as possible to pre-diagnosis, physically at least, I’m often held back by one of these layers. Each month since surgery I would wait out the pain and make new efforts whenever possible. One month the pain would subside. The next, my headaches dissipated. The next, I regained muscular strength. The next, I could breathe easier. But I could never quite get to that point where all the problems were gone and I could move freely. Each layer was met with another.

And then the chemo started piling on top of itself. The layer of hand and foot syndrome grew thicker and thicker. The layer that had my fingers cracking and bleeding got worse. The problems with my bowels remained..well..problematic. The layer of nausea covered every moment of my days. But slowly, I tried to wait them out and let them fall off, hoping each shed layer would allow me to get back to running.

But that has yet to be the case.

I haven’t given up hope that the discomfort of chemo will finally give way to the delusion relief of JUST cancer. Now that we have taken Oxaliplatin out of my toxic chemical mixture, the layers of discomfort have fallen off in waves. Gone is the nausea. The awful taste in my mouth. The headaches. The hand and foot syndrome. The cold sensitivity. Or, at least, they are GOING. I feel like I’ve gotten very close to the core of discomfort and with one more layer shed I’ll be able to feel relatively normal (“normal”, mind you, being still very unnormal). I’ll still have a handful of physical issues to manage, but nothing that would prevent me from moving freely.

That’s the problem though. Even after all the recent layers have been shed, a layer of neuropathy in my hands and feet have grown in their place. And this neuropathy is just as debilitating as all the other side effects combined. With feet that are “asleep” every second of the day, running is out of the question. Even the pressure of short walks proves problematic and any sustained effort is cut short. I’ve managed to work through the discomfort for 30 minutes on the elliptical (my boredom sometimes outshining the neuropathy) and recently discovered that long bike rides are doable, now that the weather is beginning to cooperate with outdoor activities, but getting to that point of physical ability I so desperately crave is still proving elusive.

I still feel close to that core though, where the layers are so minimal that I can get through it all, where I can run again and just go about my days with ease, not in a constant state of “battle”. I don’t want to fight all the time. I just want to enjoy my days. It’s still not lost on me, however, that I’m significantly better off than most at this point. I CAN be active. I CAN be highly functional. I CAN keep a job and provide for myself. It’s that level of ability that I’m grateful for, but which also keeps me right on the edge, where I can taste that sense of personal freedom, but just can’t reach out and grab it.

Ultimately though, I still believe this is “never forever”, which is funny since neuropathy can be PERMANENT nerve damage. But let’s not even entertain that idea right now. The regenerative timeline for most nerve damage cases runs from 5 months to 3 years, but I’m counting on the healing properties of my body to throw those numbers for a loop. Until then, I’ll wait for this final layer to shed itself and hope nothing else grows in it’s place.

Changing Pace

A 5:30 alarm would often result in a battle of wills, the adventuresome me against the still sleeping me, but this morning’s alarm was met with a prepared energy as I hopped out of bed, hit play on the stereo and found my way to the coffee maker. The night prior, just a few minutes before going to bed, I decided I NEEDED to go to Brown County State Park – my preferred trail running grounds – for little reason more than taking advantage of the weather prior to the coming storm and to experience the environment that has become more a part of me (or I’ve become a part of it) than any other identity I continue to hold. The alarm going off under a darkened sky was intentional, getting me to the park just as the sun would be halving itself on the sea of trees. I was hoping to get some decent photos to share.

The skies had different intentions though and an overcast light dulled the ground. No matter. I made my way around the park to do a little exploring via vehicle, then pulled into the empty parking lot at my favorite trailhead, figuring I’d get in a little hiking. Starting down the trail I found myself experiencing an awkward sensation, of needing to move faster, but held back by an unconscious force, creating a wavering tension in my body. I knew right away, my body wanted to run. It wanted to leap over and crash down upon the trail instead of precariously picking my way over bicycle tire rutted ground. It wanted to breathe heavily, not just inhale and exhale without necessary rhythm. It wanted to sweat and exert and light up the mind like a house on fire, rather than press against tired eyes and a heavily cloaked mind. This was unnatural to me.

Further down the trail I kept walking, my senses waking to the controlled effort, unwillingly brought into an alerted state by the chemo pain on the soles of my feet. I wasn’t sure how far I would walk with my feet in this state, and at this pace, but figured I would know when best to turn back. Here and there I stopped for photos, paused to look around…and began to notice something. Or things. Little things.

Details.

I saw bits of green foliage struggling against the carpet of dead leaves and broken twigs. I saw hallowed out tree trunks big enough to squeeze an adult body inside. I saw accumulated scrapes from mountain bike chainrings upon rocks unlucky enough to be embedded in the center of the trail. I saw trees uprooted far above, yet broken across the worn dirt below. I saw dangerous drop-offs. Cliffs just mere feet from the trail, where a rolled ankle and a tumbling body could easily end up in death.

I saw all this, newly, because I had never seen them before…despite running these trails over and over again, tallying countless numbers of miles. The difference this time was pace, a painfully slowed pace that allowed my eyes to rest on the details in the forest, to survey wide swaths of the area, to concentrate on abnormalities amidst the foliage chaos that I once ran by in a blur.

I had never walked the trails at this pace, and so had never absorbed this manner of understanding, and even appreciation, of the forest’s nuances. All my running on this stretch of woods was..well…alawys running. Fast. Very fast. I couldn’t look out into the woods, gauge how far a hillside dropped, and not worry about a misstep that tumbled me to the ground and ended my run. I couldn’t notice the stories of scrapes on rocks as I leaped over looking for stable dirt. I didn’t see hallowed out tree trunks, signs of spring, or any subtle change in foliage as everything became blurred in my peripheral vision, my focus resting squarely and only on the 5 to 10 feet of dirt stretching out before my spinning legs.

My pace was about effort and stability, not sight-seeing.

I pondered this a bit on my hike and realized the same change of pace occurred in my life as well. I went from walking a tightrope of responsibility, speeding through each day’s accomplishments, to being pushed into an operating room just a few weeks after diagnosis. My life went from a record setting marathon, a downhill stretch of trail, to a glycogen depleted, rolled ankle stop without warning. Suddenly my slate was wiped relatively clean, and where I had to speed through each day’s obligations – run, eat, commute, work, eat, prepare, sleep – I was left stunned, halted in my tracks, physically immobile. My greatest effort was counting down the hours until I could take my next pain pill.

And then, I could stop and look around.

I started noticing things in greater detail. I saw attitudes, both destructive and exemplary. I saw life intentions and the need to pursue them without abandon. I saw honesty, encouragement and friendship. I saw the value in stripping away greater and greater amounts of excess. I saw so many wonderful details, but also, like a discarded soda bottle or broken toe clip left in the woods, I saw a lot of sadness and desperation too.

But without being forced to slow down, I might not have seen them in such focus. I knew they were all there, but as i sped through each day, it was hard to focus on each one and evaluate it’s value in my life. Now, with a pace still dictated by the toxic meds flowing through my system, I see the details I was missing and am better able to let in the positive influences and keep out the negative ones. This change of pace, no matter how much I once resisted it, is infused with an immeasurable, affirming ability.

But…It’s not that simple. Just as we can’t always run through life, we also can’t always walk.

There was something else I noticed on my walk today. I was missing out on a unique EXPERIENCE. And it is that experience that always brought me back into the woods, despite the darkened skies, despite the weighted legs, despite the 5:30 alarm. When I was tearing through the woods, unable to focus on the details around me, I was also leaping over rocks, pumping life-giving oxygen into my mind and body like a high-powered machine, powering up hills with complete abandon, feeling the strain and relief exchange in my body like waves, igniting my mind like the sticks of dynamite that set the house on fire. The experience of running, absorbing myself in the environment this way, triggers a complete mind-body connection that is unparalleled, that although speeds me past the nuances hidden amongst the forest, also affords me a different way of understanding and appreciation that not everyone is privileged to have. It takes a certain pace to get there.

Of course, every run is exhaustive, and at some point we must walk. We must slow down. We must change pace. And that is what I came to understand today…that our lives are most valuable when we avoid the confinement of extremes, when we seek out the excitement of experience, but also look for the subtleties and details. There is a great understanding and a great appreciation developed when we live with abandon, but also with restraint. This, mind you, is not calling for a middle road life of safety and uneventful boredom. Goodness no. I suggest you DO live with abandon, pushing your comfort levels, dabble in danger…but don’t stay there, in that state of stress and tension. Look for those quiet moments too, where obligations are invisible, influences are absent and sleep comes easily….just don’t stay there, comfort to the point of stagnation.

There is so much to understand in existence, and just as much to appreciate, but it will take moving at all speeds to take the most in. Explore the world at your own pace, but change it enough to see what else you might find.

Uncharted Territory

Today marked my 13th infusion, which officially put me one treatment past the originally scheduled 12. It didn’t necessarily mean anything of significance for me as I’ve already reconciled this new indefinite treatment “plan” and so it was conducted as unceremoniously as the rest. With every extended day, however, brings new questions and considerations, some of which were brought to my medical oncologist today.

The meeting with him was expectedly robotic. I weighed myself before entering the room. Took the thermometer from the nurse and inserted it under my tounge. I could have wrapped my bicep with the blood pressure cuff and worked the machine if she let me.

“He’ll be right in to see you.” she repeated, but which is never true. We waited for 5 or 10 minutes before he finally walked in, greeting me with the kind, but rather tired, “Hello Superman, how are you doing?” and we got on with the assessment.

He asked about my activity levels, appetite and side effect symptoms. I explained that with the oxaliplatin removed, my hands are significantly better and I’m no longer experiencing the cracking, splitting and bleeding in the creases of my fingers. My feet, however, are another matter. Fortunately, the hand and foot syndrome is minimized and so the consistent pain is mostly gone, but the “pins and needles” are consistently prevalent, effectively leaving my feet “asleep” all day. Every step. This, I learned, is precarious nerve damage. I’m experiencing neuropathy in my hands and feet, so that every step is on pins and needles, and extending my arms completely sends the same sensations into my hands. Freakishly, if I drop my chin to my chest quickly it sends a shock of tingling into my feet, the action somehow activating a nerve pathway through my spine I assume. These sensations in my feet have ALMOST rendered my running non-existent.

I haven’t run or engaged in much physical activity for a month or so due to this physical situation, but the past couple days I decided to fight back a little and run on deadened feet anyways, if only for a mile the first day and two the second. I just wanted to see what it was like. Expectedly…although I did it…it sucked.

I’m basically waiting for these sensations to leave my body, along with the drug, but I hadn’t considered that these sensations could end up within me permanently. When the nurse was installing the drug bridge tubing into my port for a blood draw I confided that I really didn’t want Oxaliplatin again today, because my feet were still numb and I was dreading the continuous feeling of nausea and cold sensitivity (along with everything else that horrendous drug activates within the body as it slashes and burns it’s way to the cancer). She advised me to exaggerate the feelings to the doctor in hopes that he would keep it out, and then went on to explain that the drug can create PERMANENT nerve damage and that is what they want to avoid. I was a little taken back at that statement, not realizing my feet could be rendered like this FOR THE REST OF MY LIFE. Umm…no thanks.

Fortunately, no exaggeration to the oncologist was even necessary. He explained during our discussion that he is leaving out Oxaliplatin FOR GOOD. Well…for good as long as the CT scans don’t show any cancer growth. Right now, they don’t, and so there is no need to add the drug back in, as it is indicative that the drug might not even be doing anything. It would be irresponsible, and essentially unethical, to continue the deterioration of my body and therefore my quality of life if the drug isn’t even showing effectiveness to the cancer growth.

I’ll admit, I was pretty relieved, and almost excited that he isn’t going to give me that part of the treatment….which is a little disconcerting. First though, it’s a HUGE relief to know that my treatments are only about 30 minutes now (instead of the 4+ hours they once were). It’s even better to know that I won’t be experiencing the cold sensitivity, gross taste in my mouth, persistent nausea, flu-like sweating, hand and foot syndrome and the slew of other side effects this drug would cause in my body. It was TERRIBLE and I’m not lamenting the fact that it’s gone.

Actually, I’m quite hopeful about this change in treatment. If we haven’t don’t extensive nerve damage to my feet, I can only imagine these “pins and needles” will continue to dissipate in the coming weeks, allowing me to get back to a more consistent running regimen. Now, nothing is guaranteed in this experience and I’ve stopped assuming I know what is going to happen to my body, but taking out this drug does give me some hope for a more normalized routine to come. It’s what I’m hoping for anyways.

But what about cancer, right?

It’s funny to have been flooded with this drug for almost an entire year, assuming it was helping keep my cancer at bay, only to take it away with a sense of relief instead of absolute fear. Granted, the oncologist wouldn’t take this out if he knew it would allow the cancer to grow, and he has stated that if future scans show cancer growth, we’ll have to put it back in to see if it has an effect. With that, he also said two more statements that are worth addressing.

“Again, you are responding to this treatment, which is not normal, so keep doing what you’re doing.”

He has said this repeatedly in the past and I’ve always taken it as encouragement, whether it IS related to something I’M doing…or it’s just mere chance…the fact is that something is “working”, and that’s good. This time, though, I prodded him further about my situation..

“So, now that we’ve taken this drug out, have you seen people’s situations get worse because of that action? Or, and I know we don’t know much about my situation because it’s rare, but do you see a rapid deterioration if it does start to grow?”

He responded more in depth. (and I paraphrase)

“We have entered uncharted territory now. There isn’t a lot of data to examine in your situation. This is an aggressive cancer, but it is also slow growing.”

UNCHARTED TERRITORY he said. Basically, this cancer is rare and, from what I gathered, we don’t know what to expect from here on out. I guess, on one hand, it’s pretty great that I’ve gotten to this “uncharted territory” quite intact, quite capable, highly functioning. On the other hand….what happens in that darkened territory that lies ahead, that unlit experience, that vast expanse of ignorance? We JUST DON’T KNOW.

I wanted to know if, after this many treatments, people deteriorate rapidly and I can expect a shortened time line of being highly functional. I wanted to know if people died within months or years. I wanted to know if people just sustained at a manageable level through treatments for years on end. I wanted some idea of what to expect…but he could offer very little really. My cancer is not only rare, but my personal response to the cancer is rare, and so the ONLY thing we know is that I have made it to “uncharted territory”.

And that is as encouraging as it is frightening.

Admittedly..I don’t FEEL that frightened. I feel fine, to be honest. Relatively anyways. I don’t feel like I should alter my vision of living far into the future, of potentially outliving the cancer inside me. I feel more hopeful that I’ll be able to run on fully functioning feet again, that when the weather breaks I’ll be able to run the trails of Brown County again…maybe even attack them!

Maybe.

At this point…everything is “uncharted territory”.

And maybe it’s a little too sadistic for your tastes, but I tend to emotionally thrive in these situations, in the face of adversity. I find excitement in exploring the darkened corners, of pioneering new paths through my life. Change excites me. If I’m one of a handful of people finding their way through uncharted cancer territory, then I’ll be one of a handful of people detailing what I find out there in hopes that it can shed a little more light for others to find their way.

So at this point, I’m being sent into the dark, but I feel like I’ve got a torch to help me see what’s out there. I’m not walking blindly and stumbling through the black.

I feel like I might be able to start running through it soon, as if it’s not a darkened cavern with precarious unseen cliffs, but rather a new trail into a vast wilderness.

So yeah…let’s go see what’s out there.