The Ravages of Repetition

Chemotherapy destroyed my body. It dripped from the bag, down the tube, into a port placed just below my skin, through a vein, and into my heart where it was powerfully pumped away from that terminus into all the connected pathways throughout my body, trying desperately to seek out the cancer cells in my abdomen, killing its  intended target. Along the way it killed other good cells, disrupting the normal functioning of my body, from oxygen delivery, to nerve sensation, taste, touch, etc. The ravages are too many to list.

Initially, however, I felt very little. Once we got past that first night of vomiting, enabled by a break in communication where I was not given anti-nausea medications, I went about my days feeling little more than just a temporary feeling of fluid bloat. I rode my bike everywhere, ran outside, did half-marathons on the treadmill, and just tried to keep on unhindered. I was told about the effects of chemotherapy treatment, but felt tenuously fortunate that I seemed to be avoiding the worst of them.

Then came more infusions. And more. And more. And more. Coupled with the pills I took everyday for weeks, I began to experience small changes in my body. Dried, cracking skin. A mounting, consistent nausea always sitting just below the surface. Sensitivity to anything cold. Odd taste sensations. More. More. More. The infusions and the pills continued, repeating, seemingly ceaselessly, until my body’s ability to metabolize or flush the chemicals simply couldn’t keep up. Where I once hoped these treatment effects were episodic, I realized the repetition couldn’t be stopped and the accumulation of chemotherapy continued within. My body was being slowly eaten from the inside out…possibly along with the cancer.

Finally, it all came to breaking point, and my previous physical abilities were all but stopped. The slow, continuous, non-stop repetition of chemotherapy had created a new reality in my body, one of continuous degeneration. My fingers split and bled from the creases. I could barely turn on lamp lights without great effort and pain. Some mornings I couldn’t walk due to the abrasive hand and foot sensations. I couldn’t stay in a room under 72 degrees. Nothing below room temperature could be swallowed. Nausea continued to consume me. My feet went completely numb as the nerve damage mounted. And, undoubtedly, an unseen, unfelt deterioration was taking place inside me through red blood cell depletion…and who knows what else. I fear to consider the long-term effects.

All this I was warned about, but for as long as possible I held to the idea that I might be able to fight it back. I could run it out. Each treatment could be met with an attempt to help enable the drugs to get where they needed to go and then get the hell out of me. But I soon realized…it wasn’t the chemotherapy that was killing me…

It was the repetition.

Our bodies are amazing. We can consume and process so much thrown at us – nutrients, chemicals, medicines, etc., some valuable and some a little more problematic. I knew, through years of running, just how regenerative our bodies can be, from the process of breaking down and building back up our systems. Miles upon miles upon miles and yet the body continues to get stronger, faster, more efficient. So I wasn’t completely surprised by my body’s ability to fight off the effects of chemotherapy, as the nurses told me I was feeling the initial effects many months after most patients do, but I was beginning to feel them. Until that’s all I felt.

The repetition had become too much. I couldn’t expel enough of the chemo from the previous treatments before more was added. I wanted a break, badly, but that wasn’t an option. I put my head down and kept pushing through, trying to stay active at every opportunity, hoping to retain the strength and ability to push back against the ravages of chemo whenever possible, whenever I felt moments of respite from the repetition.

Then suddenly I had the option for surgery, again, and that break from repeated chemo came. I was given the go ahead for surgery months in advance and I instantly began marking the days until I could be done with my infusions, off my pills, and open wider that window of opportunity to get back to running, to reigniting that other manner of repetition that was my life before cancer.

Ultimately, I ended up with three weeks of not one more repeated chemo treatment before surgery, giving my body just a small moment to really let loose. And I took advantage of that…repeatedly…maybe TOO repeatedly.

There is a political idea known as The Reproduction Of Everyday Life, in that the actions, relationships, and engagement with the world around us, which we repeat most often, become the lives we lead, entrenching us within systems we may or may not agree with, but are continued through repetition.

I wanted to engage in this reproduction from my previous life, to repeat the running I once did before cancer, before chemo…to reproduce a life of running. With that 3 week chemo-free window of opportunity, I tried, ramping up my mileage, my intensity, despite the ravages of chemotherapy, until I started to reproduced something else. A pain, in my foot, that began spreading along the outside and into the heel, leaving me limping at the start of each morning run. I was able to get away with the unadvised mileage despite my repeating and increasing pain because I knew I was about to lose this repetition as soon as I went into surgery. I suspected for months. So I ran, poorly. I ran with a form that  was compromised by my lingering hand and foot syndrome and mild, but noticeable, neuropathy, each mile building upon itself and slowly breaking down my foot strength, leaving me in greater and greater pain. But I didn’t care, again, because I knew this repetition was temporary.

Then came surgery. My only solace being THIS repetition is so far apart from the first surgery that recovery is inevitable.

And recover I did, leading into the present day, where I am trying to reproduce on my terms yet again, without chemotherapy for the time being.

I have a new window of opportunity…a much larger window this time. As explained in a previous post, we are in a “wait and see” moment, determining if chemo was keeping my cancer at bay during the past year and a half, or some other process entirely, which affords me the ability to live without the repetition of cancer infusions. I have an open road, so to speak, in front of me.

Two months ago I started down that road, repeating my previous life, tentatively putting in mile after mile, hoping to capitalize on this chemo-free moment and get back to, not just running, but training. I began building and building and building, feeling the benefits of the repetition as my endurance increased, my mile paces began dropping, and my strength allowed me to put in greater intensity…until I couldn’t.

The foot pain came back and I was momentarily crushed. I thought I might have become too ambitious, despite only hitting 30 mile weeks, and repeated myself right into injury. A stress fracture? A bruised bone? This repetition was supposed to be positive and regenerating, not destructive. I’ve had enough of that.

I found myself back at the St. Vincent’s Sports Performance center where the best Licensed Athletic Training in the country is there to help any struggling athlete like myself get back to doing what they love. Now, as much as I know I’ll get the best care possible through this institution, I also feared the recommendation all runners try to avoid.

“Stop running.”

Darrrell Barnes, the LAT who I trust the most to get me going again, knows this fear though and he gives only the best advice for both physical and psychological recovery. After a thorough examination, we determined what I suspected in the back of my head. It wasn’t that I was overdoing it…running too much, repeating too many miles, too quickly. It was that I was doing it WRONG. The lingering effects of neuropathy have trained me to avoid landing on my foot properly and put too much strain on one side, repeating an abuse that my body couldn’t recover from, just like chemo.

The best part about this realization is that Darrell didn’t need to tell me to stop running…I just had to run differently. It came down to repetition, but in a way that would retrain me to run properly, to slowly diminish the pain and get back to complete strength and fluid movement. I couldn’t have been happier if he told me my cancer was gone (ok, slight exaggeration…slight). The window of opportunity remained open.

So here we are….further and further away from the repetitive degeneration of chemotherapy, leading into the repetitive degeneration of poor form, and into the regenerative repetition of running properly…but still running, still reproducing the life I want to live despite it all, for as long as I can.

And yet, this hope is tempered. I want to continue with these 3 months of chemo-free living, leading into 6 months of chemo-free living, and onward toward the next surgery when we can try and get rid of cancer once and for all…but I know this is all so tenuous. I know the CT scans we are soon scheduling can come back with a different plan, that puts me right back on chemo and slams the window shut before I really get to let loose. I know my surgical oncologist can pull the plug on my plans, replacing the worry-free regenerative repetition of my running, with the increasingly degenerative repetition of chemo infusions and pills yet again. And somewhere..somewhere down the line…an estimated year, year and a half, is the third surgery. The other manner of repetition.

But for now…I just want this one extended moment, this one window of opportunity to make the most of my time away from chemo, despite the lingering side effects of it’s own repetition, to push back with mine, to put in mile after mile, rebuilding moment after rebuilding moment, winning psychological battle after psychological battle, creating red blood cell after red blood cell, forming muscle fiber after muscle fiber…until I can get as close as possible to the life I had pre-cancer. Even if just for this temporary moment.

We have opportunities every day to create the lives we want, to live to our own standards, despite obstacles, despite adversity…but they will always remain moments, entirely temporary if we don’t continue to repeat them. Ultimately, we must choose to repeat the lives we want to live, through our bodies, our relationships, our engagements with the world around us, so that the negative repetitions don’t break us down, don’t erase all we’ve chosen to build. I’ve tried to never stop this reproduction throughout cancer…there has been no reason to…but the bigger struggle has been to do so physically.

At some point, though, I can only hope this reproduction of cancer, this manner of repetition, ends, and this whole experience becomes only a footnote t0 my life. A moment. A process that ceased repeating. And I can say that, despite it all, I never stopped reproducing the daily life I always wanted for myself and those around me.

But, until we get there…I’ve got more to do…over and over again.

 

 

Run Fast. Run Vegan. Running, racing, nutrition and vegan primer.

Before cancer I wrote this primer to answer the repeated questions I would get regarding running, racing, veganism and nutrition. It was initially going to be a simple PDF, but once I started writing I couldn’t stop and it turned into something much more extensive. Then cancer hit and I put this on the back burner, but after re-reading it between surgeries, I felt it was still relatively decent. I brought in a handful of people from Registered Dietitians, Ginny Messina and Matt Ruscigno, to my personal coach, Matt Ebersole, to vet the information.

I recently finished the work and am glad to offer it as an online document or printable PDF. Feel free to print, share, and spread it around should you find it worthwhile.

I regret I couldn’t put more time into making it visually pleasing or finding someone to help me make it a physical document, but all the information is still there. I’ve included the link below and in the links to the side, which lead to a downloadable PDF.

Thanks for checking it out!

Unformation & the Standard of Carelessness

One of the most comforting aspects of my cancer experience has been getting information, from doctor’s, from nurses, from books, from friends, from internet articles. I thrive on understanding the whole picture, what is going on in my body to medical advancements to having a plan of action. Unfortunately, the complexity of cancer and its corresponding treatments don’t often lend to a definable plan of action or even complete understanding of the whole picture. Even more unfortunately, the oncologists deliberately withhold information from patients in the fear of them becoming depressed, emotionally debilitated, and “giving up”. I could go on about that, but let’s just say I think that’s not fair and not their job. Anyways…as if all this missing information (not necessarily “misinformation”) isn’t enough, then there is the lack of information BETWEEN my oncologists to deal with.

I met with my surgical oncologist a month after surgery, when he removed my staples, reiterated the relative success of the surgery, and laid out a plan for me. The plan was as follows:

We hold off on medical treatment, take a scan in 3 months, then another in 6 months, and make a decision based on the results as we move forward. Those decisions about treatment and surgery would be dependent upon whether the scans showed cancer growth. That was fine. I was glad to be pursuing this route, sans side effects from treatment that have ruined my days the past year and a half, but which also might have been saving my life. I’ll get to that later.

This morning I had a follow up with my medical oncologist, who, I’m reluctant to verbalize, I’ve never felt too enthused about, as his demeanor tends to be more routine and flippant about the whole process of chemotherapy than it is empathic and personalized. Despite the oncologist reiterating that I’m “not normal”, I consistently get the idea I’m to just follow the plan and take the infusions like everyone else. Nevermind my current state of health. Nevermind my unique demographic within the greater cancer community. Nevermind the extreme rarity of my type of cancer. Nevermind the limited information we have about actually treating my cancer.

So today, I expected we were going to schedule a CT scan 3 months after surgery, per the plan, to see how things were coming along. But very quickly the exam turned to getting me back on Xeloda and Avastin, with a casual dismissal of their “minimal side effects”. First off, let me clarify, the side effects aren’t minimal. They are certainly not as bad as other medications I’ve taken or I’ve seen others take, but that doesn’t mean they are a minor annoyance. The hand and foot syndrome is downright debilitating. I’ll refrain from the specifics, but just know it’s awful. Then there is the neuropathy I’m still having to manage everyday, walking and running on numbed feet, worried that the damage might be permanent at this point. So yeah, the side effects aren’t so easily dismissed from my perspective.

The greater frustration, however, is the change in plan from what we determined with my surgical oncologist, which was to stay off chemotherapy and, in a sense, “experiment” with my situation. We would monitor the cancer growth to make sure it wasn’t getting out of control (incredibly unlikely due to it’s slow rate of reproduction) and determine if the chemotherapy was even having an effect at all. We would determine if it was the drugs keeping cancer at bay or some other biological process halting the cancer growth. We are “experimenting” because the information we have about combatting cancer, especially rare cancers, is incredibly limited, so much that we can take these risks in treatment without concern of being negligent or naive.

So, to be having such relative success in my cancer experience and to formulate a plan around this success, and then have that plan almost wholesale dismissed during one routine follow up is…well..it’s fucking frustrating. But it’s not even frustrating that the plan was thrown out the window (it wasn’t), but rather that my medical oncologist didn’t seem to have any of the information that my surgical oncologist did. I don’t know if there was a breakdown in communication, but this seems to be par for the course between the two. CT scans are scheduled on top of CT scans because one doesn’t know what the other is doing. And here I am getting pulled back and forth between scheduling and treatment, even though I’M the one dealing with both the physical and emotional difficulties of this situation. It would be one thing if I heard, “Oh, I’m sorry. I didn’t realize that had been the plan” or “I’m sorry, I didn’t know that was already scheduled. I’ll check back with your other oncologist.” But it isn’t. It’s talking in circles and leaving me more confused and less emotionally stable than when I entered the office.

Ultimately, after some back and forth with my medical oncologist, it was determined that I need to call my surgical oncologist and set up the first CT scan. It was also determined that I could start my chemotherapy treatments anytime I wanted at this point, whether that is in two weeks, after thanksgiving, or the beginning of next year. Essentially, he left it up to me, though all the while casually reaffirming the Standard of Care of chemotherapy treatments until surgery or chemo does the trick.

Here’s the thing though, lest I start to sound like a bratty, spoiled kid who just doesn’t want to take his cough medicine because it tastes bad. The doctor’s have said I’m not normal. I’m not responding to this experience the way most do. In fact, they say most patients in my situation (how many is that actually…I’m 1 to 2 per MILLION who get this cancer) DON’T respond to chemotherapy treatments. Everything I have read about my cancer says that surgery is the ultimate deciding factor in “curing” the cancer. Really, so little is known about my cancer they aren’t sure WHAT to do, short of surgery. But here I am, two surgeries out and no growth of cancer over the last year of treatments.

Which is exactly the reason why we are “experimenting” in the moment, really trying to determine if the chemotherapy treatments are what held my cancer stable or if it was something else entirely, even if we never figure out what that “something else” might have been. It’s worth a shot, but not just because chemotherapy sucks. It’s worth a shot because we have so little information about what’s going on with my cancer and cancer in general, that we SHOULD try to experiment. We SHOULD add this experience to the accumulated information that is crucial to future treatments.

We should also experiment, because I’m not as at risk as other cancer patients are. My cancer is slow growing, very slow growing, enough that I’m never really at a critical point. This is, unfortunately, not the case with others. For those that KNOW chemotherapy is holding cancer stable, or shrinking it, they NEED to be on it routinely, without fail, lest their cancer take over their bodies without remorse. For them, going without treatment can lead to massive cancer expansion within weeks, and so they don’t have the luxury of seeing if chemo is doing the trick or something else…but I do. My cancer grows very slowly and being able to detect it’s growth is something we can manage, so to hold off on treatment, as even my medical oncologist conceded to today, is not a life or death situation.

We are not naively hopeful about this situation, however, because if the scans were to show cancer growth at any level, I would jump back into the infusion chair before you could even schedule the next appointment. I’m not being flippant about this by any means, but since all the information I have come across gives little credit to chemotherapy for my type of cancer, and because I’m not ever in a critical stage of cancer growth, it’s imperative we give this a try.

But I’ve discussed all this before. We know what the plan is and we know what we feel comfortable pursuing. What I’m having trouble reconciling after todays visit is two-fold.

1. The inability to have a more structured system of information sharing between my two oncologists before I go into their follow up meetings, and,

2. The rigid protocol and Standard of Care of chemotherapy treatment without much consideration for the individual receiving the treatment and their current diagnosis.

The first point is more about my emotional state than offering an outline for systematic information sharing (it’s called an email?). Any cancer patient will tell you about the ups and downs of the whole experience and the various processes we have to go through in order to find out what’s going on inside our bodies, or even if we have months, years, or an indefinite timeline of mortality left. They’ll tell you about going into dark places, finding light places, or coming to some point of reconciliation and just going about life as usual. But no matter the calm each of us may find, just below the surface there is always some manner of emotional tension, that often arises when we have these doctor’s visits, enter hospitals, or are forced to get more information about our cancer or diagnosis on a periodic basis. For some of us, having a plan of action keeps us emotionally stable. It allows us to put our cancer in a framework, to know that although anything can change in a moment, THE PLAN is what we follow until cancer says otherwise. So in this specific circumstance, I had been working off this plan since just before surgery up until today, when all of a sudden my medical oncologist steps in as if the plan never existed, completely throwing off my sense of stability and TRUST in the plan.

If i’m being totally honest here, however, I won’t lie…I trust my surgical oncologist more than my medical oncologist, despite only seeing my surgical oncologist a few times a year. With the information I have about my cancer, I know HE is the one that will “cure” me. HE is the one that will get rid of my cancer through surgery and so he has a more vested interest in working with me and giving me straight answers. Admittedly, he’s far more personal and caring than my medical oncologist too. I think, from my observations of the waiting rooms and my understanding of the system, this is probably because I’m less part of an assembly line of patients to him than I am to my medical oncologist. The chemotherapy treatment centers are a funnel of patients where nurses and doctors alike seem to be overworked and go through periods of stress. The surgical oncologist’s office is much more laid back. All that aside, I trust my surgical oncologist because he helped me formulate my plan, knows on a directly physical level what’s going on inside me and is much more attentive to my needs and questions. So I trust him and I trust our plan, while, as understanding and forgiving as I am towards my medical oncologist…I just don’t trust him as much. I think, to him, I’m just a number. Just another patient to funnel through the process and Standard of Care of giving chemotherapy and letting ME deal with the side effects, no matter if the chemotherapy may not even be necessary. I feel like, to him, it’s just about playing it safe, following the law of cancer patient averages, and giving me the chemotherapy because “that’s what we do”.

I only wish those two could either communicate more or I was given a definitive answer as to who is my appropriate guide in this situation. I’m looking for that emotional stability and trust, and although I feel like I have that in this plan and working with my surgical oncologist, everything is always so frail and tenuous in the cancer state that sometimes it feels like the floor drops out from beneath me after each appointment when plans are changed.

The second point I continue to address, for good reason, which struck me deep after this morning’s appointment. The Standard of Care is based on best-practice, seeing the overall positive results in chemotherapy treatment, even if those positive results are mere months of extended lifespan. This Standard of Care has been developed over decades of trial and error and accumulated knowledge of cancer and medicinal breakthroughs, but that doesn’t mean we know exactly what we are doing when it comes to cancer. We’re still taking shots in the dark and often hoping that SOMETHING works, without being able to point to what that something might be, and so, although I’m not the professional or the expert in this situation, I still feel like my considerations regarding treatment should be more thoroughly addressed. It’s not that, when I press the issue, my considerations WON’T be addressed, but therein lies the problem…that I have to bring up my concerns. I can’t once think to an appointment with my medical oncologist where I was asked, “What would you like to do about this?” or “How do you feel about this treatment?” Even if the questioning is a little more patronizing than honest, to at least involve the patient in the discussion should be part of the Standard.

It’s been said I’m not “normal” as a patient. I respond better to treatment and everything is going unexpectedly…in my favor. But I think I’m not normal in other ways as well. I’ve been periodically trying to understand my cancer outside of the framework of dominant culture’s perception, by reading a number of books on cancer, considering different approaches, reworking terminology, and just trying to inform myself in ways that I think might benefit me, primarily emotionally but maybe physically as well. I know other cancer patients do the same, but this is not the standard. The expected reaction is to gather your friends, put on a “cancer fighter” t-shirt, walk into the treatment center with your posse, and go about your days “being positive” and all that surface level stuff. And that’s great. I would never diminish someone’s attempts to face down their mortality in ways that give them calm and agency. The problem, I tend to think, is doctors have carried out their position as experts in a way that doesn’t give agency to the patients because the patients have conceded all decision making in exchange for following the cancer patient protocol. The doctors tell you what to do and the cancer patients take it. Come what may. But that’s not me.

Trust me, I listen to my doctors. Every word. But I can’t help but feel like a kid in the principal’s office at every visit, knowing I’m going to be told what to do and take the “punishment” without response. The relationship I have with my medical oncologist is such that I feel if I do offer an alternative perspective or consideration, or even resist the advised plan of action, that I will become a nuisance patient, a burden, an annoyance, and will be met with a “who do you think you are I’m the expert here” type of retort. I wish I was exaggerating. And it shouldn’t be this way.

I’m not saying oncologists should hand over all decision making to the patient, but more than anything, a CONVERSATION should be held during each appointment, where options are discussed and the potential for questioning and explanation is part of the standard, instead of a hurried process where one patient is pushed out so the next one can come in. Admittedly, I think this DOES happen. Maybe I’m expressing frustrations that I’ve somehow been funneled towards a less than compassionate oncologist with minimal social tact who is more concerned with plugging me into the framework of Standard of Care than he is helping me feel better about this whole situation.

Again, I’m not normal, and I think that is part of why I’m so affected by this change in plans. Look, chemo is no joke. You may not be able to tell how I feel just by looking at me, and I may be highly-functioning and very active despite a year and a half of treatments, but that doesn’t mean this is the equivalent of a sore back. It affects my physical abilities EVERY SECOND OF THE DAY. Right now I’m feeling the neuropathy in my feet, a continuous numbness that never lets up. When I’m on chemo the drugs accumulate till my hands and feet turn discolored and it feels as if I’m walking on sandpaper due to Hand and Foot syndrome. At it’s worst I couldn’t turn on lamplights and my fingers and toes cracked and bled. And I am a runner. Not just “I run”, but I AM A RUNNER. It is my identity, part of my day, crucial to my emotional stability and foundational happiness. So for other cancer patients, although chemo ALWAYS sucks, I can’t help but wonder if they are ok accepting the standard of care because it’s less about their physical state and more about their mental and emotional condition. Mind you, I’m not saying others have it easy. I actually think I have it easier than most, but I often struggle with accepting my continuous treatments when I know each one means I’m closer to losing the one activity that keeps me stable. If I just needed to go about my day working and making it through, that’s one thing, but when I know I’m UNABLE TO RUN because of my physical degeneration…well…how do I reconcile that? So, in terms of just throwing the Standard of Care at me, casually giving me chemo when there is the VERY REAL potential that I MAY NOT NEED IT, I’m not so flippantly willing to follow the protocol without deeper consideration…but that is definitely not the approach of my medical oncologist. He couldn’t care less that I’m a runner. He couldn’t care less that I am emotionally and intellectually invested in understanding my cancer and treatment. He couldn’t care less that I may be a an extreme outlier. But I do care. I have no choice.

And I hesitate to paint such an unfeeling picture of my medical oncologist, but I have to be honest. After yesterday’s appointment, after listening to all the trite, repeated, insincere small talk followed by the complete ignorance of the previously established plan that is both exciting and hopeful to me, this is how I’m feeling. I feel like another patient standing in line, waiting for my pill, because this has been the standard for so long and no one feels they are in the position to try anything different. No one is interested in new information, sharing information, discussing information. The process has become so routine, so defeated, that we know little else what to do except keep handing out the pills and hope for the best.

I care more, though, admittedly in unavoidable self-interest. I’ve got more at stake in the immediate sense than just taking the pill and hoping for the best. I want my quality of life in the moment to be at it’s utmost as we figure out the best plan of action, as we see what turn my cancer makes, as we consider options that are outside the Standard of Care…if only because I have the luxury to do so. And if cancer writes the plan for us and I have to go back to the standard, taking the physically degenerating concoction of chemotherapy…then so be it. I’ll do it, without flinching. Absolutely. But sometimes we need to consider changing the standards. We need to have discussions, conversations, and new considerations. We need to inform each other. Doctor to patient and patient to doctor. And if we end up deciding the old standards are still best practice, even on an individual basis, then at least we have that new, refined information to work from. That’s good medicine, best-practice, to me.

The Sculptor

I’ve developed a number of analogies trying to describe the process of getting stronger and faster, from an inflating balloon to a tractor pull, and they are all true in their own ways, but this new “situation” of mine inspired a new comparison.

First, today I ran a race. A 5 mile race in the middle of my “longish” run, but I was certainly not “racing” it in the traditional sense. Laura and I decided to run this after we discovered it was something of a tribute to a local young woman who recently died from cancer and who was also a chemist…something to which we can both relate. In any other circumstance, I would NOT sign up for a race, as I’m still trying to push my thresholds to a level where I can discern from warming up to a full on sustainable race effort. Right now, it’s start and then, soon thereafter, threshold. I need range, which brought me to the analogy.

Somewhere within us is the capacity to get better, to become the runner we aspire to be in so far as our biology allows us, but which also involves crafting. We can’t be the runner inside just because we feel that would be awesome. We can’t step to a start line and run a 5:30 pace because that seems like a worthy goal. It takes a great deal of crafting to bring that runner out within us.

It’s like being sculpted.

We start off as a huge slab of rock, unformed, shapeless, but with a potential deep inside to be something greater. Inside that rectangular rock is a chiseled (literally), smooth, lean, runner that is capable of running 5:30 pace with great ease. The sculptor’s job is to find that person, to use their tools to take chunks away from that rock in order to get to the runner inside.

To start the process is easy. The sculptor can take massive chunks off with big swings, each one amounting to our starting threshold. The slab is (in my case) 7:30 pace. A hulking, dragging pace. But with each effort, each training run, each week of mileage gone…huge chunks come cracking off, the sculptor chiseling away to get closer to that final piece.

The next swings bring the sculptor closer and closer, 7:00 pace, 6:30, 6:15, 6:00, 5:50, 5:45…and the runner takes shape. Each swing needing to become more and more refined, each run more and more focused, specific, gentler. The risks of damaging the inner piece become greater and greater as the sculptor nears the completed piece, necessitating blows with greater aim, different tools, sharper angles, until the form is complete and refinements are all that remain.

5:30 pace is achieved and the sculptor takes even gentler blows with smaller tools, sanding the finish to a texture as smooth as skin, before putting on the final polish for race day…the runner complete.

The comparison all makes sense, unless you’re me, of course. My situation is different, and today was my way of figuring out just how many larger chunks I had taken off with my recent running efforts. Turns out, it’s not as much as I would have hoped. But I knew this.

My rock, my slab, hiding the runner within, seems to be hardened at this point, beyond normal density, so the tools bounce and deflect, only knocking off smaller pieces, seemingly dulling with each attempt. I’ve hit and hit and hit, but remain taking off 7:30 fist-sized chunks to clear away to only a hardened 7:00 layer of rock that refuses to budge. In normal circumstances, I would be cleaving this away furiously, as if the rock was sandstone, something brittle and softened, quickly revealing the harder layers somewhere near 5:45 pace where new tools are necessary.

Today’s run was 5 miles and I could only hover at 7:00 pace, finishing around 7:05, confirming my suspicions about the fitness I’m currently trying to build. I feel stuck, stagnant, hardened. I’m trying to break through to layers that more easily fall away, but the outer layer of my slab is stubborn and I can’t get through.

This, however, is all an analogy. I’m not rock. I’m not an unchiseled slab. I’m a fluid biology that can be, and will be, shaped with continuous effort, against surgery, against cancer, against chemo to build back into the runner I know I can be.

Somewhere within this body is the runner that puts down 5:30 miles with ease, runs 6 x 5:00 mile repeats, and runs races to win instead of just finish.

The sculptor just needs a little more patience in his toolbox.

Remind Yourself

At the most simple, unassuming times I am struck with two realizations.

First, I HAVE CANCER.

And second, I AM NOT DYING.

They don’t always run in that order or even follow each other consecutively, but they enter my thoughts often. I know they come, because I’m being reminded, not allowed to forget, that the first is my reality and the second is my hope. They are unusual, out of place, even awkward. They come and they stay, because this is not the reality of most in my situation. I remind myself of these two realities for good reason, lest I become drawn to the extremes of either, to continue through my days with drive and purpose.

It’s true, I do have cancer. Somewhere within me there are cells, defined as cancerous, that have circumvented the checks and balances of my biology and spiraled out of control, reproducing wildly and chaotically, threatening my life. I have cancer because I am told the scans show it. I am told these cells have gathered somewhere near my colon, too precariously out of reach from the surgeon’s knife, for now. I am told they are cancerous, but to be honest, I’m not entirely sure what that means, because the last time we checked they were not STILL reproducing. They had been stunted, frozen, paused in their selfish survival objectives. If this is true, it does not mean they aren’t still cancer, but does it mean they are cancerous, and will they reanimate at some point to continue with their objectives. I don’t know, but I do know they are there…in me. I have them. I guess they are “mine”. But we aren’t buds…I’ll assure you that much.

I have cancer, and although the reality informs my life greatly, it does not own my thoughts. It only creeps in when the rest of my mind goes quiet. It comes when I stop thinking about running. It comes when I stop thinking about design. It comes when I stop thinking about my son. It comes when I’m walking down the street holding a pizza box in my hands, driving to pick up Laura from work, sometimes engaged in conversation with friends…it comes when I feel the LEAST that I do have cancer. It reminds me.

It comes when I’m running.

It DEFINITELY comes when I’m running, because if there is ever a time when I feel like I have cancer the least, it’s when I’m running.

And yet, this is also the time I’m reminded…I AM NOT DYING.

I was dying. Believe me, I was absolutely dying, about a year and a half ago. I was apparently closer to death than I’ve really come to admit to myself, because despite my ability to run, despite all efforts to ignore the physical concerns I was having, the cells that remain in me somewhere had reproduced to the extent they were siphoning all my life-support to continue theirs. I was so close to dying that the surgery necessary to keep me alive was scheduled just 3 weeks from the first appointment with my surgeon. Other appointments were moved to make room for mine. I didn’t realize it, but I was dying, which is funny because no one had yet to remind me, or even tell me, YOU HAVE CANCER. But for sometime leading up to that point, I did have cancer, and I was dying.

And then I had surgery. And a year of chemo. And endless months of continuous recovery, degeneration, recovery, degeneration, recovery, strength, degeneration, strength. And a whole lot of living. Somewhere in the timeline between surgery and the present day, the scans told us the cancer had seemingly given up, held off, backed down, froze. They stopped growing, reproducing, doing their cancerous things…and I had continued living, actually getting stronger despite the initial surgery, and the subsequent chemo treatments. They were strong, but I was getting stronger. I was able to put on weight, to eat, to put on muscle, to work, to run. That is not dying. Dying is getting weaker, thinner.

I am reminded of this, because it’s not how the circumstance usually plays out, that despite having cancer, one is not dying. I’m not. I’m not dying. Until the scans show the cancer growing again, I’m not dying.

I HAVE CANCER because 2 months ago I was lying in a hospital bed, unconscious, a machine breathing for me, being pumped full of chemotherapy just days after being sliced in two, unable to think, write, or communicate. I was, by most conscious definitions, not dying..but dead.

But I AM NOT DYING…because 2 months later, today, I put my backpack in a gym locker, tightened my shoelaces, and ran into the street and up the trail for 6 miles, at 7:15 pace, as a workout led by my coach. I’m not dying because I’m now TRAINING, not just running, not just rehabilitating my body, but pushing my new and temporary thresholds to new temporary mile markers of effort. I’m not dying, because someone tried to pass me today towards the end of my run, but only made it another 400 meters before they slowed to a crawl as I kept going, finishing my 6 miles at a “moderate” pace. And that, is my favorite reminder of my two realities.

I HAVE CANCER. I AM NOT DYING.

And for you, for all of us, the timeline has a definitive end…no matter how it may come, and we must continue to remind ourselves, WE WILL DIE, but that does not mean WE ARE DYING. We must simply make efforts to actually live. Remind yourself.

Inspiration…With Teeth

Reluctant Responsibility

I continue to struggle with the responsibility of being an individual that inspires, in part because I haven’t fully internalized that responsibility and am not sure I want to. I have been told by others that I inspire them, and trust them in their word, but my apprehension lies in actively TRYING to inspire others. To be honest, I’m often NOT trying to inspire others. I’m living my life, as I always have, just making the most of my time, abbreviated timeline or not. This has always been my day to day, and if others are inspired by my words and actions, then who am I to deny them.

But with inspiration comes a reluctant responsibility. To inspire someone means, to some degree or for even a brief moment, they rely on me. They expect a return from my words, from my actions, to continue this stream of inspiration…and I might not deliver.

I might be a downright disappointment. I may struggle. I may become incredibly negative. I may fall back into petty gripes and non-issues. And that’s just me…I’m not a role model and I’m not a poster boy for inspiration. I’m just a guy trying to live the fullest I possibly know how despite any number of obstacles that meet me along the way. Debt. Failed relationships. Conflict. Cancer.

I have enough to deal with and taking on the deliberate role of “inspirational individual” isn’t necessarily of my own making, and so I’m not sure I’m ready to deal with that dichotomy of potential success and failure. I don’t even know HOW to be that person. This is all very new to me.

Acceptance

But all that is only partially true, just a way of dismissing the effort to try, and protecting my potential failure, because you know what, I DO want to inspire others. I WANT to be someone others look to for perspective, for drive, for motivation…as downright frightening as that is. I don’t want to let people down. I want to help people experience a greater emotional intensity, just the same as I get from others.

Because I’ve suddenly found myself in the position to do so, connecting to more and more people through an experience others find unique and…well…inspiring. I can’t deny that. Whether I want the responsibility or not, it is there, and it would be somewhat insulting if I were to ignore the context, put my head down and just go. That’s an insult to everyone who doesn’t have an opportunity as impactful like this.

And lately I’ve been feeding that responsibility, that newfound role, primarily through my social media channels in which I’m connected to most people. When I feel the twinge of narcissism and worry about putting up yet another photo of my latest run or cancer-based experience, I err on the side of inspiration and honesty, of showing the more complete story, of giving another example of passionate living. And cats. I also show cats.

Inspire Yourself

Before I go further, let’s address a crucial component to inspiration. It often leans on others…and that’s dangerous. To find motivation outside yourself is to be vulnerable, to be susceptible to other’s decisions, to lose control, to relinquish agency of your own life, to give power to those that have no responsibility for your well-being. To rely on others for emotional stability can be problematic, and at it’s worse, dangerous.

First and foremost, every individual must be inspired BY THEMSELVES. Every individual must find the confidence in their actions, the motivation to take risks, the drive to find perspective, the inspiration to live the most passionate life they can muster. The only one we all owe responsibility to is the emotional individual within us, the only one we should ultimately rely upon, for when everything around you collapses and everyone abandons you…none of that matters.

We should all be inspired by ourselves. We should experience accomplishment and passion, and be driven to seek and find it again and again, because we know directly what that feels like, to have achieved it on our own.

To the individual who has lost all emotional self-reliance, what is a world with no more internet memes, no inspirational phrases plastered over images of mountaintops, no Oprah quotes on coffee cups, no friends to get them out the door, no spiritual texts and self-help sections to peruse, no feedback loops of affirmation from everyone else needing the crutch of others accomplishments?

Personally, I don’t want to know.

I want to know the inspiration I get from others is not a foundation to my emotional experience, but an addition, an addendum, an enhancement, and if they are not there for me…I’ll still be ok. I want that for myself and I want that for everyone else as well. Before everyone else, inspire yourself.

Empty Words

Here is where everything gets tricky. I am NOT one for empty gestures and hollow words. I want honest, tangible meaning behind the verbiage we throw around, and lately it seems like “inspiration” has fallen into this catch-all trap of perceived positivity and feel good back-patting. Individuals have been building careers, cults of personality and personal empires around the relatively empty idea of “inspiration”, and that makes me nauseous. I do NOT want to be associated with this new culture of “inspiring individuals” if this manner of inspiration is simply to make others feel momentarily good…for no purpose.

What exactly are we saying when we talk of inspiring or being inspired? Is there any moral responsibility to it? Does it progress the individual in any meaningful way? Are we just being patronizing?

In my own experience, one of not fully accepting the responsibility of being inspirational, I have remained uncomfortable without directing this matter of inspiration people have professed to get from my situation. Ultimately, I trust this received inspiration is positive, constructive, and valuable to the individual, and so that is great…but for me, that is not enough.

I would never want to be that “inspirational speaker” that tells my personal story, of overcoming adversity or whatever, and just letting the feel-good experience slowly dissipate. I want to be impactful, in a TANGIBLE way. I want to drive people towards a better life, for themselves, but also for others…with purpose…with teeth.

With Teeth

Hitler was an inspired individual. Eric Harris and Dylan Klebold were inspired individuals.

When we leave “inspiration” completely open, not rooting it in purpose, intent, or defined morality, we create at it’s most innocent, a worthless gesture, but at it’s worst, a dangerous premise. Granted, I highly doubt anything I could offer to others through my personal experience would result in a dangerous premise, but nor do I want to leave anyone with a worthless gesture either. I want to root my inspiration in something tangible.

With that said, I want to inspire others towards veganism, towards recognizing the disconnect our social context has created between human animals and non-human animals, and the ways it compels us to see ourselves as “others”, somehow above our obvious animal behaviors, absurdly separate from all the instincts and emotional lives every other creature on this earth share with us. I want to inspire others to tear down the figurative and literal walls of separation between our emotional lives and the emotional lives of animals being confined and tortured by the economic and egotistical impulses of modern civilization and all it’s machinations. I want to inspire as many human animals as I possibly can to make the choice to go vegan, in diet and lifestyle.

Connected to that drive, I also want to inspire others to reframe the way they view the world, our power structures, our sense of agency, our relation to immediate neighbors and those we will never see, our place in the timeline of existence…and how all that informs our sense of morality, our heightened sense of self-importance, our involvement with the social contract that none of us signed upon being birthed into this world. I want individuals to become individuals, to erase the unthinking associations they have found themselves seemingly attached, to shed all the absurdities of modern civilization and get back to being humans that think for themselves, develop moralities that fit into their personalized contexts, to shed ideas of religious subservience, nationalism, speciesism, separatism, economic superiority…to simply be human.

And to be human is to be self-reliant, while engaging with a supportive community, and continuously seeking a fulfilled and passionate existence, to recognize the absences in our lives and fill them with a value that makes us proud and excited to be alive. To be inspired.

A positively inspired, morally inspired, intellectually inspired human is not suicidal, does not seek the excesses of drugs, is not driven by religious fanaticism, is compassionate towards their fellow beings, is not susceptible to empty gestures and hollow words, is able to fight through adversity and the inevitability of physical and emotional obstacles, is able to meet the conflicts of the world with perspective and action….and does not settle for less.

An inspired individual meets their deathbed like everyone else, but the one who ran through life inspired with teeth does so with an appeasement, an acceptance, an unmatched contentment. If I have a part in helping anyone achieve that, I will be indescribably grateful to have been put in this position, but no matter my role, I’ll continuously be seeking this degree of inspiration for myself. And that will be enough. I only wish the same for everyone else.

The Body Responds

Sometimes Cancer is a waiting game, whether it’s anticipating the results of a CT scan or recovering from treatment, and trying to find some sense of development in that waiting can be difficult. In terms of physical progress – expelling the buildup of chemotherapy, gaining back red blood cells, etc. – the measurement of that progress can be elusive. The positive changes one hopes to see aren’t always so apparent and we’re left wondering if anything is getting better. We’re left wondering if we’re getting stronger or weaker, or just in a holding pattern.

But then there is running, and in running, progress can’t be mistaken. From the recognition of huge gains to even small victories, engaging the body on a daily basis and measuring the progress is both distinctly noticeable and deeply comforting. I know this, because I’m experiencing it now. I definitely experienced this measurable progress pre-cancer when I was in maximum training, but it’s even more noticeable now as I get back to running consistently again. In part, it’s because I’m starting from zero. My cells were wiped clean. My muscles atrophied. My lungs, deflated like over-stretched balloons. So any physical progress at this point will come rapidly and be unmistakeable. It’s not like I’m pushing the ceiling of my abilities, striving so hard to get just the most meager edge of performance. Now, every run is a workout, and so the benefits will follow.

And that excites me, that running allows me to KNOW I’m progressing. So many individuals (cancer patients or just the sedentary) are either relegated to passivity or simply choose it, maybe not knowing they have any other option, and therefore succumb to the waiting game, hoping the body acts in their favor and shows them signs of progress. Running, however, counters both those actions. Running engages the body in a way that forces it to adapt, using stressors to repair muscles, build red-blood cells, triggering the body’s various systems of regeneration…and let’s us know it is happening. With repeated stressors we feel progress, we feel development, we experience ourselves running further and faster, smoother and with increasing ease. Running let’s us know exactly where we stand. The numbers don’t lie.

I’m just under two months from my surgery, and to say I’m surprised at my recovery is an incredible understatement. I’m shocked beyond words. This time last year, I think I was still at my parents, stuck in bed, barely able to walk down the street. I was completely wiped out, without energy, without strength. To even imagine running took more effort than I cared to expend. And today? I ran for 40:00 minutes, with more ease than I have since I started back. The progress is unmistakeable.

And it’s because I simply tried…and the body responded. It was only a few weeks ago that I took my first tentative steps towards running, testing my legs, my lungs, my scar tissue. Then each day I tested them a little more, sometimes forced to rest, yet sometimes able to keep going. It hasn’t been easy, by no means, and it’s still very rough, but I’m moving and feeling the progress. Recovery seems to necessitate a full day off between running, allowing me just periodic walk breaks during my runs, but the strength is slowly returning. My lungs initially held me back the most, unable to retain sufficient oxygen no matter how deeply I would breathe in, but today, with the aid of chilled air, I could breathe with consistency and take deeper breathes as the miles wore on. Where my legs would falter and my form begin to collapse, I could now continue bounding off my mid-foot and run with stature. Where I mentally weakened from the sustained effort, today I only stopped to prepare for tomorrow’s longer attempt.

The body is responding and I’m literally feeling it.

I’m not waiting for an abrupt physical change or measured assessment from the doctor to make me feel the progress, but letting the body tell me in small increments, each day, with each mile. I KNOW I’m getting stronger because the numbers don’t lie. The amount of miles I can now run compared to three weeks ago don’t lie. The time it takes me to finish a run compared to three weeks ago doesn’t lie. The pace per mile I can now sustain doesn’t lie. The deepness with which I can hold my breath doesn’t lie.

Pardon my self-congratulation, but this is really exciting for me, as I’m sure you understand. I had no idea what sort of physical life awaited me on the other side of this most recent surgery, whether I was looking at months of passive recovery or even years. I had no idea, but now I do, and it’s very exciting.

I was talking to one of the runner’s I coach today, and he said,

“I never thought I could run this far!”

I knew exactly how he felt, what it is to experience the ability of the body, to progress, adapt and recover. It is a FASCINATING experience that only those who engage with their bodies deeply understand, and I’m fortunate to have become one of them. I’ve always been absolutely amazed what my body could do through running, through sustained effort and stress while training and running 100+ mile weeks, but this new progress is a whole ‘nother level of fascination and excitement. I’ve been filled with chemicals, repeatedly cut open, broken and damaged in so many ways, and I can’t even fully know what damage has been done to me and what physical restrictions I might be experiencing, but despite all that, my body is still responding. Despite all that damage, it’s coming back. Despite all that cutting, I’m healing. Despite all that poisoning, I’m creating cells that deliver crucial oxygen to my systems. Despite all atrophy, I’m running stronger, further and faster with each day.

I’d never wish my experience on anyone else, in order for them to understand what the body is capable of, but fortunately, it doesn’t have to be this way. All it takes is the effort to progress, to push your limits, to understand what you are physically capable of…and I guarantee it’s far more than you currently imagine. The body can be destroyed, day in and day out, but it can always respond to the damage, to regenerate all the same, to get stronger and faster…and you don’t have to just sit and wait for it.

I plan to prove this for as long as I can.