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.

Is This Running?

Laura is training for the Monumental Half-Marathon coming in November…and I was tired of sitting in bed binge watching Breaking Bad. Last weekend came on the heels of legitimately fall weather, that beautiful coupling of sun and low humidity that allows runners to begin cashing in all that summer training that seemed to be getting them nowhere. I, right now, am not one of those runners, but couldn’t help at least putting myself out there, to experience that shift in the air that marks something important, something great, an anticipation of success only so many of us truly understand. Plus…I was tired of laying in bed. I suggested we head to the trails of a close State park.

After locking up the car, Laura jogged off to the trail head and I began a short walk to a different trail entrance point, watching other runners go through their paces, mountain bikers zipping past open spaces in the woods, and feeling compelled. I was only going for a walk, I told myself. I wore dead racing flats, jeans, a t-shirt and heavy sweatshirt. I was truly only going for a walk. But then I stepped onto the trail and began winding through the snaking dirt, around trees, over rocks, and…well…this wasn’t working. I’m not accustomed to walking through the woods. It feels awkward. It feels forced. And admittedly, I was out here to progress my recovery. Walking just wasn’t going to do it.

After looking over my shoulder to make sure I was relatively alone, I started a very tenuous, gentle stepping through the curving trail. Not fast. Not forceful. I just wanted to see how that would feel. Then I kept going, because it felt…just fine. I wasn’t RUNNING so much as just lightly jogging, but it was enough to stress my lungs, which admittedly, takes little to no effort at this point, but still, I didn’t need to back off. My legs were fine. My abdomen was fine. My lungs were, well, not fine. But that was, in part, why I was out there. To begin pushing them back towards their normative levels. There is only so much sitting around and waiting for the body to fix itself before one must take the initiative to help it along, to stress it, strengthen it, build it back up. I’m not one for waiting, so this little walk quickly turned into a very casual, intermittent jog.

It wasn’t a run though and it was barely a jog. My lungs suddenly reeled back in my efforts and I started walking, then jogged some more, then walked, then jogged, then walked, feeling the accumulative stresses building each time I started up again, unable to catch my breath almost the second I started pushing myself each time. I was suddenly relegated to just walking the rest of the way back to the car, up a steep set of hills mind you, but still walking. I made it back to the car, somewhat surprised and thoroughly fatigued for what would, under normal circumstances, amount to nothing even close to a run or workout of any kind. Laura soon found her way back and we drove off for breakfast and coffee.

I wasn’t sure if I had started running again. It was encouraging, yes, but also very soon. I have a leftover suture still visibly protruding from my neck where a 6 inch tube was inserted just over a month ago. Sticky residue from bandages remains visible on the inside of my leg where no water or friction will wear it away. My incision is hardened scar tissue, my internal sutures just now threatening to poke through like spring weather sprouts, as they did last year. The scabs where my enter/exit chemo tubes pierced my body are still the size of bullet holes and, sorry for the TMI, staining my t-shirts with fluid and leakage. My insides…well…who knows what’s going on in there. Still, I can run. I can do that, to some degree, so that’s what I’m going to do. If we can call it that.

I woke this morning, already resolved to run around my neighborhood…this time intentionally…just to see what happens. It’s a 2 mile loop back to my house and I had already chosen my outfit for the day, actual running clothes. I woke with the same resolve and built my confidence through the morning, forcing myself into running clothes before I allowed the motivation to wane too far. I stepped out into that distinct fall weather, and although I wasn’t going to cash in any previous training, I at least knew I had no extra external obstacles to manage on top of everything internal I had to deal with.

Precariously I jogged down the street, not even attempting to push myself, but let each leg swing past the other at it’s own meter, my head down, paying attention only to the effort of my breathing, which this time STARTS as if i’m FINISHING in the death throes of a failed race attempt. It is hard. It does not get easier. It is barely fun, or encouraging, or inspirational. It is just work.

I try to breath in rhythm, but feel as if I’m breathing against myself…which, I am. I can not bring full breaths into my lungs, in part from depleted red blood cells, but also from the internal scar tissue of my incision. My lungs can only inflate so far before they push against the calloused skin, the inflamed intestines, and I’m left to take abbreviated breaths for as long as possible. I do so for the first mile, my watch mocking me with a ticking 9:30, before I bring my legs to a halt and start walking up the street, letting my lungs rest for the next effort.

Looking ahead, I make a deal with myself.

“Walk this block, then jog all the way to 11th. At 11th you can take another break. You can make it there, at least, right?”

I agree and do just that, finding my way to another intermittent finish and let the relief of a halted effort fill my body, holding onto my hips like I just finished a 5k and let my lungs ease back to neutral, except they never do. They are taxed and will stay this way. I have no other option but to make more deals.

“Walk this block, then jog the next two.”
“Walk this block, then jog the two up the incline.”
“Walk this block, then jog home…that’s all you have left.”

Somehow I agree to my demands and am able to reach each one, with lungs increasingly worn from the effort, the two miles feeling embarrassingly long and unlike any effort I’ve had to exert at this distance before. I’m still unmotivated, uninspired, unencouraged…but I had to make it home.

On the porch I still didn’t feel accomplished…just done. I tell myself not to bend over, knowing standing back up will risk a light headedness that will bring me back to the ground. Ultimately, I ran 2 miles, if you want to call it that, and glad to have done it, but not filled with a comeback attitude…that will come later. Right now it’s not about BEING inspired, but just putting in the effort, still in suffer mode, tired of remaining horizontal, too impatient to let my body do the work. This is the time that I have to begin helping things along, speeding up the recovery process and getting through it until the passion comes back, and the excitement returns.

I want to say this…whatever I’m doing…is where I start. I want to say this is where running begins again, but I have no idea. I don’t know what is to come of my body and my abilities in the next few weeks. We start with movement, then a mile, and two…and at some point see where it ends. Call it what you may, but it can’t be denied that it’s at least momentum. I’ll take it.

No Poster Child

I walked into the oncology waiting room, my mom following behind me, the eyes of other patients and relatives all lifting to watch us walk in. I knew what they were thinking…

“Which one has the cancer?”

I know this, because I think the same when anyone walks through the front door or into the waiting room from the exam area. Most of the time, you can instantly tell. We are frail, or balding, needing physical support from others, have sores on our bodies, are pushed in wheelchairs, or are simply old. But not me. I walk in with my mom or dad and know they think the patient is the parent…until I walk up to the window and begin talking with the receptionist. I, undoubtedly, stand out. Despite turning 38 last month, in the world of cancer, I’m just a baby.

I sat in one of the waiting room chairs and pulled out a book, avoiding the gaze of anyone who might be sizing me up, looking for tell tale signs of weakness. The door to the exam rooms opens and 4 people walk out, one them being supported by two others. There was no doubt who was the patient among them. He was the poster child (a misleading term) for cancer. He was old, by all definitions, but aged worse from the disease. His wife helped stabilize him as they walked him towards a wheelchair, every step a conscious effort. His skin hung from bones, spotted and marked. His stare, completely vacant. He didn’t talk…everyone spoke for him. I couldn’t help wonder what kept him alive…and why. His existence, pardon my bluntness, is not one I ever want to experience. Surely the doctors, with their unending list of patients, see little hope for treatment. I wonder if they must be simply following the wishes of the family, taking their lead, who want any time to continue sharing love and protection to their husband, their father….understandably. Sometimes, I wonder, if treatment isn’t about the patient at all, but rather the emotional desires of loved ones.

Looking at this frail old man, I couldn’t help but appreciate my predicament, valuing my relative youth, taking comfort in the life I’ve lived to this point, recognizing the reward of health and strength. I am not the poster child.

The room cleared out and we were left alone, waiting to be called to the back for examination and questioning. I didn’t feel sick. I barely felt the waning pain meds. My greatest discomfort was the line of staples still pressed into my skin, wearing out their welcome days ago. The door opened and my name was called.

After basic vitals were taken (128 lbs – race weight! – without the necessary muscle) the practicing resident, who was also one of the accompanying surgeons, gave me a simplistic rundown of my situation, expressing hope and encouragement towards my diagnosis and saying little more that gave me concern or strayed from the original plan. This has not always been the case. He quickly removed the rest of my staples, with minimal pain, and said little else that warranted remembering. This has all become so routine and the in and out of the exams have lost the emotional intensity they once held. The cancer experience, at least mine, has seemingly become little more than a checkup. I still feel confusion, and sometimes even guilt, that it has all become so easy, so routine, so…unconventional. And sometimes I still get scared, because it has become all that. Because I’ve internalized this whole situation and relatively thrived through it in such a way that I’m not as bothered as I used to be. A little more tension might do me good. On the other hand…I’m not the poster child. And I don’t want to be.

The resident left to be replaced by my oncologist, the individual truly in charge of saving my life, and he quickly went through a physical examination, mouthing approval of my healing scar. He followed with another recap of my surgery.

“I got about 3/4’s of it out…”
“I thought I could get it all…”
“Didn’t want to risk a temporary colostomy…”
“Trouble near the colon….”
“Decided to hold off and not do further harm…”

Nothing new surfaced from what he told me in the hospital. Thankfully. It all went as good as it possibly could have considering the circumstance, meaning I still have cancer, but considerably less than before, and now we have more decisions to make.

We continued discussing recovery.

“I feel shockingly better than I did last time.”

I am not a poster child.

I pressed him about the logistics.

“So you said that maybe the chemo treatments might have got to the tumors and made them easier to get out this time, right? So, were they easier to get out? Is that what happened?”

“Well..yes. They were easier to get out this time, and I wish I could have gotten them all out…now, whether it was the chemo that made them easier to get out….I can’t say. We really don’t know.” he admitted.

I knew this. We know very little about cancer, about chemo…so this I accept. We try everything and hope something works..even the processes of the human body. He confessed that it may just be the immune response from my own body. It could be of my own biological doing. It could just be a trigger..of which we don’t know. He recounted stories of other patients who came up with No Evidence of Cancer all on their own…without surgery…without chemo. It happens.

He talked further about the future.

“So, our plan now is to let you recover, for you to get stronger, and then take a CT scan in a few months to see how things are going. Then another in 6 months. We will keep you off chemo, but keep checking in before starting again.”

I stumbled over his last sentence. Chemo? Again? Please no.

Our plan prior to surgery was to “wait and see”, to see if chemo really was the dominant factor in reducing cancer or some other non-chemical mechanism, the human body, dumb luck. Anything. Anything but chemo. I thought we were going to wait and see…and that is what we are doing, but I guess I hoped we were leaning on that possibility more than the expectation of undergoing chemo again. That was stupid of me, however, because I know chemo is ALWAYS an option. I know the CT scans can come back to tell a more ominous story, but I just didn’t..and don’t..want to believe it. I want to believe I’m not the poster child, that I’m different, that I don’t need chemo. And that is a dangerous position to take…I know better…I need to stay neutral.

Still, we were just talking options. It just felt like he was more definitive in his statement. As if to say, we’ll see how things are going and then start chemo in 6 months, instead of saying, we’ll see how things are going and IF NEEDED start chemo…or forego it all together. I wished he was a little more fluid with his statements. Still, this are just options, and this is one.

We talked about surgery too…again…a third time. This I was more prepared for.

“We’ll look out about a year from now, or maybe a year and a half and see about going in and getting the rest,” he explained.

This time there was less “if’s” in his declaration. The third time is a charm. With how much he removed the first and second time, it seems a definitive that the third time would be the last time, and despite still reeling from the necessary abuse, I didn’t flinch. Let’s do it. Get it out of the way. Get it out of me and let’s move on…finally. But, despite the confidence and positivity of this approach, this is still just an option.

In the process of cancer, everything changes. Sometimes rapidly, sometimes unexpectedly. We never know how it will all proceed and a year away in the cancer world is akin to a lifetime…so much can happen. Cancer could come roaring back….or it can disappear without a trace. It can be killed and it can just die. Nothing is guaranteed within a year.

Without much more of consequence said, that was the end of the appointment. He gave me free reign to eat with abandon, do everything I enjoy, and just live my life until we meet for a CT scan and reassess the situation. There was no need to take immediate action, to respond to desperate circumstances, to give timelines, projected lifespans or survival percentages. I am not a poster child. I don’t need that information right now. I simply need my options.

We walked into the empty waiting room and out of the building towards the car, still a little defeated from the potential for chemotherapy in six months, but trying to remind myself that I’m not a poster child, that my situation is different, that maybe, just maybe, I can avoid chemotherapy completely. I won’t say I can avoid surgery too…but if I must reach past my boundaries for something, it can at least be a treatment without chemo.

Who knows…I’m not the poster child for cancer, so all possibilities are still on the table.