Django Unchained. Everything Unchained.

Laura and I went for our run Saturday, hopping in the car to drive out to our favorite running path…and almost made it. Driving down the street adjacent to a fairly neglected neighborhood we both caught sight of a dog walking down the sidewalk, his tail between his legs and a large chain padlocked around his neck. Padlocked. Seemingly involuntarily I hit the brakes on the car and pulled over. The dog stopped.

I tentatively got out on my side of the car and talked to the dog in a calm voice. He didn’t run, but didn’t come towards me either, frozen in either fear or curiosity. I waited for him to start barking or growling, but he did neither. I saw wounds on his legs and assumed the worst. I didn’t walk any closer and he trotted a safer distance away from my strange presence. I walked to the back of the car and knelt down, trying to appear less intimidating, talking to him in a high-pitched voice. It must have worked as he instantly trotted over to me, checking out the situation and certainly in need. As he got right up to me I saw the wounds all over his face, head, ears and legs. The padlock hung around the chain on his neck and he shook his head back and forth with force. Without thinking through a plan I knew this dog needed help and decided to get him in the car. I tapped on the back of the bumper of our hatchback and he instinctually hopped right in, apparently quite comfortable with us.

Seeing all the wounds on his body, suggesting his role as a “bait dog”, sent me into a mild panic and I tried to calm myself into action.

“Shit. Shit…who do I call? Who should we call?” I asked to Laura.

A few of our friends work as vet techs and we immediately tracked down their numbers, sent them texts and left voicemails, waiting for responses as we paused our plans to run and brought him home to our garage where he would be safe until we could figure out a better plan later. He was calm in the back of the car, but let out saddened moans before settling down as the car headed home.

We pulled into the garage, opened the back and he hopped out to check out the immediate surroundings. Laura went inside to get blankets, cat food (all we had) and water. I kept him company as he pressed up against me, his tail between his legs. I wanted to comfort him, but was wary of making sudden movements and his fur was absolutely covered in a crusty filth, which I later realized was dried blood that had poured from all his wounds. While waiting for Laura I saw his ear was dripping blood onto the garage floor and assumed some of the wounds he showed were relatively fresh.

Laura came back out with towels to put over a blanket and without hesitation he laid down on the garage floor as we discussed our plans for the morning. We decided to get our run in while waiting to hear back from others, knowing he was now safe for the time being and there was little we could do but wait. Admittedly, the run was psychologically difficult, as I couldn’t help but want to finish in order to get back and make sure he was going to be taken care of as soon as possible. I imagine Laura’s was the same.

Fast forward to today and this is a summary of what has taken place since we came across this dog…who we named Django.

- Our vet tech friend from FACE, Adria, brought over a bag of dog food, antibiotics for his wounds, and a bolt cutter. We chopped off the chain immediately.
– Laura and I bathed him, which turned into an emotionally charged experience as the dried blood washed off into the tub and Django shook his still bleeding ear and face all over the bathroom walls.
– Django laid calmly in the basement nursing his wounds as we scheduled a vet visit for Monday morning.
– Django was neutered, vaccinated, checked for heart worm (negative) and sent home with antibiotics, anti-inflammitories, and a collar which he absolutely hates.
– A friend offered us a soft collar, which has been so much better for him, and he has fully accepted us as caretakers, crying when we are just upstairs and pressed up against us at every opportunity. He’s calmly laying next to me as I type this.
– A call went out online as we are desperately trying to find him a permanent loving home. We have an older cat, two kittens and an on-the-go schedule that doesn’t work with giving the attention Django needs.

Those are the logistical specifics…but there was also the emotional change and relation we experienced between each other. Django trusted us when we stopped to help him on the street, though he probably should have been frightened and defensive. Although tentative, he got in our car, then slept in our garage, followed us in the house, and made a spot for himself in our basement. But he was, rightfully, scared. His wounds hurt. He had been abused by other animals, and most likely, through the dictates of other animals that looked just like us. Except, we talked to him differently. And we touched him differently. We made a bed of cushions for him and continued to check up on him. And all that broke his fear…mostly.

He would wag his tail when we came to see him, but wouldn’t come until we called. And when he pressed up against us and we would reach out to touch him, his tail would go between his legs and he’d freeze. Any sudden movement around his face and he flinched. Sometimes just stroking his back caused him to twitch. He wouldn’t eat unless the food was on the actual ground. When we went out back, he found dirt to lay in, maybe out of a familiar environment? But slowly, he changed. He wags his tail more and more. He still presses into us, but instead of dropping his head, he has begun looking into our faces. He trots after us when we run across the backyard. And he grunts in happiness, laying next to us in bed. Despite the continued abusive treatment shown through both bleeding wounds and the hardened scars on his head and legs, this animals emotional life and trust towards others somehow remains intact. His transformation in just a few days with us is as heartwarming as it is heartbreaking.

And that’s where it stands. People have kindly referred to us as “heroes” and “saviors” for taking in Django, but this is somewhat hyperbolic. We did what any other decent, empathetic (read, all of us) human would do, who happen to also be in the circumstance to take care of a frightened creature. We stopped the car to help. We would have done the same for a child or an adult in obvious need of assistance.

And this dog needed assistance, badly.

But so does almost every animal in our society. And although this experience with Django doesn’t surprise me in one bit, it’s hard to turn off my consideration of the deeper issue here. Django is an animal, as humans are animals, with a level of consciousness and emotional depth that is comparable by no relevant divide. Every single person with a pet knows of this emotional depth. They experience the bond between human animal and non-human animal, and it affects them…but somehow, that divide in our relations to animals remains, primarily through disassociation and disconnectedness. We maintain that divide in the way we treat animals, caring for and securing the safety of some, while imprisoning, using and abusing others.

Bringing a rescued animal into your life exposes this divide with an incredible intensity, and it breaks my heart. It breaks my heart because I know the emotional life of Django is deep, and should I take care of a rescued chicken, the depth would be the same. If I took care of a liberated cow, the depth would be the same. If I took care of any creature, no matter it’s ability to express it’s emotional state, it would be deep enough to warrant care, protection and relation.

You can imagine, this only further drives home the reality and frustration of a culture that disconnects us from all the other animals that deserve care, consideration, or at the very basic level, a life lived on it’s own terms, away from confinement, away from physical harm, away from abusive hands and the butcher’s blade.

But this is not the case.

And despite the relative hypocrisies of my genuinely well-intentioned friends helping secure a loving home for Django, with honest care for his well-being, but who still live by these divides and disconnects…Django was, by all signs, tortured by this same disconnect. My friends would never torture an animal. They would never tie him up and let other dogs attack him, training them for dog fights. They would never disconnect from his emotional needs and allow him to be beaten, left out in the cold, or mistreated in any way.

But the reality remains, other animals we have undeniable connections to, physically if not emotionally, are in imaginably worse conditions due to our disconnect. They are the chickens, pigs, cows, mink, goats, mice, dogs, cats, etc., kept in factory farms, fur farms, laboratories, and all the institutions of our dominant culture that have found ways to use them for human gain, primarily profit. Some of these institutions we have found easier to not support, whether they be the fashion industry or experimental laboratories, but others we willing engage in without consideration. We buy leather, wool and silk. We eat their bodies without a second thought. We use beauty products or drink their milk without even acknowledging what we are ingesting or the process of how it got into our hands.

The disconnect is pervasive. It is a huge wall…literally.

And yet, it is an illusion. The reality of these animals lives, physical and emotional, is at our fingertips. It is on the internet in videos of factory farms, fur farms, and laboratories. It is even a stones throw, literally, from the highways on which we drive, inside the windowless factory farm sheds. You can stop the car, walk over to them, and look inside at the horror. You can see dead animals lying on the ground. Some will be sick. Some will be bleeding. All will be miserable. You can view the videos and see the abuse delivered at the hands of overworked, underpaid, emotionally disconnected farmhands. And you can see the inherent process of violent killing every animal must experience in order to be packaged, sold and prepared to end up on your plate. All for a simple meal, a celebration, an unconscious eating of their bodies without knowledge or regard for their emotional lives.

And, without hyperbole, every one of those animals is Django. Every one of those animals has the capacity to create a connection towards human animals, to evoke an emotional response the same as Django has with friends and strangers alike.

Ultimately, this is our ability to relate to non-human animals, to see ourselves in them. The problem is, we never get the chance. We do so with our pets because we have a continuous connection to them, and therefore vilify those that will imprison and torture them. Sometimes we vilify their INTENT to harm, but sometimes these people are just acting by the dictates of dominant culture, that teaches us to view animals as commodities, as means to ends, as creatures unworthy of a deeper care or consideration. This is the same fundamental dictate that tells men to do the same towards women. The rich towards the poor. It is domination, plain and simple.

When Laura and I stopped to see if Django needed help, and if we could help him, it wasn’t because we were being “heroes” or “saviors”, but because we have rejected the divide our culture places between human animals and non-human animals. We have recognized that in the context of civilization, we have a self-imposed obligation to consider those less fortunate than us, to acknowledge their drive to live as free as we hope to, and act towards that. It is why we stopped to help Django. It is why we choose to live a vegan lifestyle. It is why we support organizations that work to erase the divide between humans and non-human animals, who liberate them into the wild, who strive to reconnect humans to the natural world while also keeping our actions in the context of a civilized existence, who give both human animals and non-human animals the chance to experience fully liberated lives.

I commend and fully support every individual who acts towards non-human animals with the care and consideration we have morally established towards own own species, but we can do more. We can first widen our circle of consideration, to which we then widen our circle of compassion, to include not just the animals we have made immediate emotional connections with, but also to those who always have the POTENTIAL for emotional connection…not out of selfish desires for companionship or reciprocated love, but simply because it is moral, it is just. Of course, the easiest way to do this, daily, continuously, is to go vegan. Eat beans, grains, fruits, vegetables, greens, cookies, cakes, coffee, nuts, seeds….everything that isn’t animals. Leave them off your plate, out of our crumbling civilization, and let’s find a new way to relate to animals until we’re all liberated together.

Unchain Django. Unchain non-human animals. Unchain humans. Unchain everything.

My 15 Minutes?

RW Cover

A lot has happened today. A LOT. Ok…mainly a lot of clicking on my keyboard trying to keep up with social media congratulations. There is so much to be said, that I will try to devote the time and emotional energy to in the coming days, but for now, I need to compile some of the articles and videos that have been created about my story for this blog. I certainly want to keep track of all this for my own chronicling, but to also acknowledge the work others put into creating these stories. It is insufficient, but still, I think you with all the gratitude I can muster.

http://www.indystar.com/picture-gallery/life/diet-fitness/2014/11/10/runners-world-has-an-indy-cover-model/18801967/

http://www.huffingtonpost.com/2014/11/10/scott-spitz-running-with-cancer_n_6109402.html

http://live.huffingtonpost.com/r/segment/third-metric-runners-world-cover-contest-winners/5457b1b278c90a09880000ce

http://c.brightcove.com/services/viewer/federated_f9?isVid=1&isUI=1

http://www.runnersworld.com/runners-stories/cover-contest-finalist-scott-spitz

http://www.workoutcancer.org/Scott_Spitz.html#.VGFw6NwYFBU

Hello…umm..world?

Well hello, nice to meet you. This is somewhat awkward. Meeting you, I mean, like this. Some of you already know a bit about me through my writings, but I’m assuming there has been a huge spike in my traffic by the time this goes live, because I’m thinking a lot of you recently ended up here after seeing me on the cover of Runner’s World. Yes, that happened. And I’m as surprised as I am humbled. The thing with being on the cover of Runner’s World and having my sort of “15 minutes of fame”, now extended to maybe 20 minutes by the power of social media, is that I feel a small manner of responsibility, of preserving my identity, of making sure that who I am is laid front and center for anyone who may want to engage with me further past just reading through some of my blog posts. I don’t want to be elusive, misrepresented, and just plain something that I’m not. If we’re talking about making friends and enemies, I err on the side of honesty and let come what may. This might seem an unnecessary introduction, but I still feel it worthy, so bear with me on this initial post, then read on to others if you’d like. Let’s just get into it.

My name is Scott Spitz and as you probably gathered from the Runner’s World profile, I’m a runner and a cancer patient. I’m also a number of other accepted identities, whether that be an anarchist, atheist, parent, skeptic, dork, and so on. I’m human, which is to say, very inconsistent (I refuse the idea of being “flawed”), and I won’t pretend to be anything else, so if you’ve come here looking for some idyllic representation of a “cancer warrior” or “admirable role model”, I’d suggest looking elsewhere. What I would advise, as I practice with others, is gathering what suits you, evaluating, and either tolerating or eschewing the rest. That’s my advice anyways. With that in mind, I feel compelled to clarify a few things so you know what my premises are and what to expect from this blog should you stick around.

I love to run. Duh. I discovered my talent and passion for running at a young age and although I spent a number of years without it as a central component to my life, I was fortunate enough to rediscover it at the most opportune time. I am not just a “runner” though, I am a competitive runner. A competitive, distance runner. A vegan, competitive, distance runner. I could probably add more descriptors, but that should be suitable. All this is to say that I don’t separate my politics from my recreation, and my recreation is to a degree that most would find obsessive and excessive. I feel most myself in racing shorts, completing 100 mile weeks, and daily seeking an experience that has never been matched by anything else but running. It isn’t just an act. To me, it is an experience, an emotional state, an accomplishment in it’s own right, but also a reaction to the passivity of our daily lives. Running makes each day worth living…and when I don’t run, well, you know how that feels. Running feels like my own private superpower and to let that power go unfulfilled just feels, for a lack of better term, wrong. Absolutely, undeniably wrong. That, to keep it succinct, is how I view myself as a runner.

I’m also vegan, as should be very apparent. But I’m not the vegan stereotype that is portrayed in the media today. Ok, that stretches the truth a bit…stereotypes exist for a reason, but rest assured, I’ve moved past the more annoying traits that come with over excitable individuals who have discovered a new identity, lifestyle, and wealth of information that must be shared. Admittedly, I went through all that, but this was 20 years ago when most of you probably had never heard the term vegan and so couldn’t care less. Yes, I went vegan back in 1994, and I did so for ethical reasons, which defines my approach to much in life, and remains the basis for my decision. There are a lot of reasons to engage the vegan lifestyle – health, environmental, etc. – and I won’t mince words about it all, but now I do so with a little more social tact and genuine consideration of alternate viewpoints. That said, I do feel adopting veganism is a crucial step for a moral individual and society to take in order to truly live up to our aspirations of compassion, care, stewardship, love, and acceptance. Too often we throw around these words as feel good affirmations instead of doing the actual work to make them a reality. Going vegan and liberating animals from their positions of confinement, both within our social structure and in cages, is the easiest way for the individual to affect real and lasting change…immediately. I urge you to click through some of my links to find more information about making a permanent transition.

I’m also an atheist…which is rightfully criticized for saying very little about a person. Of the many identities I’ve accepted, I specifically choose to clarify this one, because I feel it is a crucial aspect of my overall worldview and approach to my potentially fatal disease. The fear of cancer isn’t so much about the ravages of the disease as it is the abbreviated timeline and the forced consideration of one’s mortality. It is about not just CONSIDERING one’s death, but very concretely KNOWING it, in the short term. This isn’t a mental exercise anymore, it’s a reality. But hey, our mortality is always a reality. Everyone one of us has the potential to die tonight, or tomorrow, or in a month…but often those are considerations of chance and risk, of not stepping in front of a bus, of hoping the pilot flies us to safety, and although they may be legitimate concerns, they are simply that, concerns. Disease and the process of evolution and survival taking place within our bodies is not a “concern” as it is an unavoidable physical reality. It can be said we are in the state of dying and so to consider what happens at the end of that process and onward becomes of the utmost importance…at least for one’s preferred way of handling the emotional stress of considering mortality and the desperately hoped for “afterlife” or recognition of the survival instinct.

So yes, I am an atheist, and I came to that accepted identity around the age of 22, which has held immeasurable importance in my dealing with cancer and the potential abbreviated end of my life (which, by the way, seems to be halted and maybe, just maybe, potentially reversed at this point). See, when I was hit with the diagnosis I had already come to terms with what it meant to die and be dead, with nothing to follow. I was ok with that. I accepted it and appreciated it, so when cancer came, I spent so little time dealing with that added emotional weight or trying to “get right with god” (if one accepts that manner of judgement), that all I had to do was face down the physical battle in the immediate sense and “get busy living” as the phrase goes.

I could go on. I could tell you about my catholic upbringing, my deep consideration of morality and judgement, my intellectual research into various religious perspectives, my reading list of books both on theism and atheism and everything in between, and how after all was said and done, I became immovably comfortable with the reality that THIS is all there is. That we are the most indescribably fortunate products of immeasurable chance and circumstance…and how I have no words to describe how awesome that is. And then, how all that affects my approach to having a cancer diagnosis.

But I’ll leave it at that.

I am also a parent, and although a novel of decisions (some good, some bad) took place where my son ended up with his mother in North Carolina and I stayed back in Indiana, I still feel I’m a damn good one. I love my son to death and do everything I feel is pertinent to give him the best life I can while enabling him to become an individual of great character. I’m not sure what else to say about that.

I am also, as you might deduce, an “extremist”, which is such a poor and misleading term. “Extremism” is a concept based on standards, and so if we’re using dominant culture as the baseline, the middle point, then I am certainly an extremist. I am an admitted and accepted extremist because I find little of value in dominant culture and the life I choose to lead puts me at odds with its moral dictates, it’s economic structure, it’s forced passivity, and it’s drive for a sense of achievement that seems to level everything in it’s path – floral and fauna. I then find it imperative to speak out and live against this dominant culture of violence, instead of resorting to concessions, begging for change, and resting on hope. These actions, although tactically debatable, feel like soul killers. On my deathbed (not yet cancer!) I want to say I opted out of the social structure at every opportunity that mattered and made sense, and I want to know whenever I had the chance to speak up and act out for the most oppressed of our society, that I did. This might help explain the image of the Animal Liberation Front on the header of my blog. I also, for the same reasons, don’t pull punches. If I see absurdity, I call it out. Even at the expense of removing my foot from deep within my throat later, I err on the side of saying something rather than keeping the peace. In my years of varied experiences, I feel this is the best approach.

I know, all that sounds rather bombastic, maybe intense, maybe “extremist”. But rest assured, as central as these identities and perspectives are to my being, I am also a completely, absurd, ridiculous goober. My ultimate goal each day is to make people laugh, to be a good person, to know friends and strangers walked away from me thinking, “hey, that’s a pretty good guy right there.” I don’t always succeed. My social media filters are significantly more filled with holes than my face to face filters, and I’ve made enemies. In the end though, I want to be a good person. I want to use every experience I have to make the time we share more enjoyable between us, whether that is through my running, my writing, my parenting, my politics, my actions, my bad jokes, my struggling wit, my approach to cancer, my approach to life. This shit, all of it, all we see, is just too damn amazing, too damn awesome (I won’t say “too damn short”), too damn everything to waste on absurdities. We all need to lighten up, cut out the bullshit, and go out of life like running off a cliff screaming with passion. Whether anyone else feels the value in that, I don’t know, but that’s how I want to go…and that’s how I choose to live.

So there. Now you know A LITTLE more about me than what can fit on a couple pages of a popular running magazine. Maybe you’ll stop reading right here…that’s cool. I get it. No hard feelings. But if you do continue to read on and find value in following along, I hope we make a real connection and I hope we become friends, just remember, my filter is full of holes and my runs only go further and faster. I hope yours are the same.

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.