Parallels

I don’t want to die. I’ve said this before, and I hear the same expected chorus of refrain come back to me…”Duh.” I know, it sounds relatively absurd to voice, but there is a reality to this consideration that many in more fortunate circumstances don’t necessarily understand, because sometimes…it all does seem to get too much. In this cancer “battle” (for lack of a better term) with no definitive timeline of conclusion, the waiting can really wear on you. It’s different when you know the pains and frustrations are going to end, like in a race, but something else entirely when you imagine battling through the daily discomforts until…well…an unhappy ending. When you realize that all this struggling can still end in defeat, the weight feels even heavier, as if the effort doesn’t actually matter. Sometimes, the struggle just doesn’t seem worth it. Sometimes it gets really old walking (and running) on feet consumed with pain, watching the skin on my hands dry and flake away, having to weigh the effect of every meal I eat, working against the overall physical fatigue and emotional frustration of doing so every day. And if this sounds a little like the struggles we go through as distance runners, it’s because there are parallels….just imagine taking the pain and fatigue of 100 mile weeks…and multiplying them by 10. Or 100.

I’m not going to cover up the desperation either. I’ve ran through the considerations of taking my own life in light of this desperation. I’ve talked to friends about this and they, compassionately, acknowledged my considerations. Mind you, I don’t want to take my own life and don’t dwell on the circumstances that would bring me to that point, but in moments of desperation…those considerations entered my thoughts. Don’t worry, it’s healthy. To become introspective across the emotional spectrum is a defense mechanism and acknowledgement that something is amiss. Again, I don’t want to be in the position to have these considerations, and am glad that I’m away from that desperation, but I understand when others face down the agency of managing their own mortality.

I do, however, want to live, and imagine coming through this cancering experience in victory and triumph, instead of absolute defeat. It was that image which entered my consciousness while out on a run today, a triumphant lifting of the arms as I broke the tape of the cancer experience, my surgeon mouthing the words, “You’re cancer-free.” That is the finish I hope to experience. But, as we distance runners well know, there are other potential outcomes to face. First, though, the preferred envisioning involves tackling a course, no matter how difficult, feeling the physical wear and tear, but running the race well, coming to the finish in victory and living to fight another day. My vision for cancer is no different.

Then there is the converse. Either the strains of the course proved too difficult or the body was unprepared, too weak to fight off the increasing deterioration, and we fall short of the finish line, dropping out in complete defeat, metaphorically “dying” as we like to put it. In the cancer experience, though, there is no metaphor. Dying is dying. And the course is unfinished. It just goes on until someone draws a line in the sand and you cross it, finishing before you even realize it’s over, when someone says, “You’re done. You’re cancer-free. The scan came back negative.” Until then, you just run and run, hoping you prepared well enough, building enough strength to take on every obstacle the course throws in your path, to make it over each hill, each mountain. The problem is, you don’t always know what’s coming or when the course ends. So, you just put your head down and go. You have little choice. Admittedly, some obstacles are foreseen and you can do a little preparing. The next hill…err, mountain…in my course will be met on August 11th, when I find myself at it’s base. HIPEC mountain we can call it. It will take me some time to climb up and over, very gradually picking up speed on the descent, but I’m confident I’ll get there. Where I go after that…well…who knows. Either my body is strong enough to keep taking on the unseen obstacles to come, or I run across the finish line with increasing speed and my hands in the air.

Or…

I find a middle ground. I cross the line defeated, as we distance runners sometimes do. The course throws obstacles in our path that break us down, slowly, over and over. Our muscles tire and drain, shifting strength to other areas of the body, then drain those, until there is nothing left before the finish and we find our pace slowing further and further, our heart beating out of control, our motivation decreasing with the effort increasing, until we reach the finish in desperation….sometimes walking through with our heads hung low, and others, crumpling to our knees in total exhaustion. But….we finish. That is a victory in it’s own right, and with cancer, it’s more than just a fulfillment, it’s an absolute triumph. It’s cause for celebration instead of disappointment, because no matter how we get there, to cross the finish line is the ultimate goal. And most importantly, the triumph is in what comes next, both in running and disease…the recovery. We know, no matter how the finish is reached, that whatever damage has been done up to that point, a recovery, a regeneration will follow and we’ll live to fight another day. In running, that means a shot at redemption, at revenge. In cancer, it means to live another day, without restriction.

It’s something telling about the cancer experience that when even crossing the finish, while broken and beaten, is cause for celebration. It is a victory. I’ll take either outcome, whether that necessitates doing the “survival shuffle” (another apt comparison), or a full on sprint…just as long as I don’t “die”. Metaphorically and literally.

There is one more parallel to point out. We runners will talk about our PR’s and our finishing times, because they are summaries of our goals and efforts, measurable against others and in their own right, but that is only for simplicity sake. Get us talking long enough and we’ll tell you about the course, about the the hills and heat we had to overcome, about the parts that wore us down and where we felt strong and light. We’ll tell you about everything that happened between the time the gun went off and when we made it to the finish, because we don’t run to break the tape….we run to run. We run for the experience. We run for everything in between the start and finish…no matter the outcome.

My approach to this cancer experience is no different. I don’t know where the finish line is. I don’t know what obstacles will spring up before me. I don’t know when I’ll feel broken and beaten or when I’ll feel strong and swift, but I’m going to make the most of all this time between the proverbial start and the elusive finish….because that’s why we run. That’s why I live. And that’s why I don’t want to die.

———————

Lastly, I want to acknowledge those in the race with disease that don’t know where their finish line lies, but do know there are no more descents, no more tailwinds and no victory at the finish. There is only the efforts they have until the body breathes it’s last breath. All I can offer are these words….don’t die because you stopped breathing…die because you ran out of breath. I’ll run with you for as long as I can, and then try to reach the finish for you.

We All Have Cancer

We all have cancer…it’s just that we seem to forget every morning we wake up.

The thing about cancer, is the fear and dread is not necessarily about the cancer, but rather the realization of the worst case scenario..that it will end in death. Cancer is not always a losing proposition, so a diagnosis today isn’t always a reason to just curl up in a corner and wait to die. Many of us are attempting to show a different reality, but that doesn’t mean the fear of ultimately dying sooner than expected isn’t always present. It is. But as we navigate through our days, hit peaks and valleys through chemotherapy treatment, and wake each morning along with a rising sun, we are reminded there are unwritten moments strung far out ahead of us, waiting to be experienced. Cancer simply isn’t always a death sentence…or at least an immediate one.

There is the heavy burden of waiting for death, however. There is the realization, sometimes more conscious at times than others, that we are trying to live in moments that may be taken away more abruptly than we expected. Physical digression can happen quickly and the predictability we desperately hold onto can be lost should cancer turn the tables. Cancering is a very smart process, learning to overcome our ingenious defenses. Ultimately, we, as cancer patients, fear death just like everyone else, but the reality of that end stares us down more pointedly, more directly, more consistently.

But dying is always there….whether you are diseased or not. In that sense…you have cancer too. You have to face the fear of dying just like everyone else and you have to make decisions in your life, not just for survival’s sake, not just to avoid dying, but also to live a life that is full, rewarding, and makes the most of your brief blip in our existence brought about by chance and circumstance. For those of us that face it down every day, the strength and drive to make the most of our days is never lost. It is never lost, because we never forget about dying. We can’t. It won’t let us.

When I wake up every morning, I’m greeted by cancer. I’m greeted by hands and feet that are broken down from a year of chemotherapy treatments. I’m greeted by a stomach that taunts me with hunger or concerns me with blockages. Sometimes I’m greeted by headaches, nose bleeds, nausea, or any other list of physical annoyances. And the forgetting never comes. I’m reminded every time I go for a run and have to cut the mileage short. I’m reminded when I can’t drop beneath 6:30 miles. I’m reminded when I’m worn out from the daily annoyances and can’t find the drive to put in another ounce of physical effort.

Some of us just don’t have the luxury of forgetting about our imminent death.

But that’s ok. Our survival instinct, our motivation to avoid death, coupled with that distinct and deep realization of an ultimate end is what compels us as humans to pull the most from our days, to treat others with kindness and do as little harm as possible, and to simply live a valuable and intense life with the time we have. I truly believe I’m FORTUNATE to never forget my dying. But it wasn’t always this way.

I too, before cancer, forgot about dying and would only revisit it at my convenience. I always appreciated the perspective it gave me to dwell on it for a period, but it would often fall to the wayside in the face of so many petty, daily distractions. Facebook, news media, chores, work, etc. etc. They all eroded and chipped away at the more valuable realizations that comprised my existence. I could easily get wrapped up in petty arguments, issues I had no control over, celebrity absurdity and so much more. And, although it’s fun to dabble in that from time to time, I now have more pressing issues facing me down, stripping away the perceived importance of our attitudes and perspectives of dominant culture, so that I’m constantly reminded of what REALLY matters to me, what I REALLY have control over, and I’m compelled to focus my energies there. I’d rather make the effort to spend the evening with friends planning our Wilderness Academy (side project I’m involved in), or get up early for another trail run, or force myself to write a rambling blog post, than give in to so many other distractions.

These are simply choices Ive chosen to make with the impetus of getting the most out of my days, now that they might be shortened. I make these choices because Cancer doesn’t let me forget about dying…about not existing…about my consciousness being turned off like the light in a burned out bulb.

And really, the only difference between my dying and yours, is that cancer has brought a more predictable timeline to my end. Yes, I could get hit by a bus tonight….just like you. Yes, there are a myriad of ways we can all die before we even realize what happened, but those are the unpredictables, the ones we really can’t bother ourselves with. It’s the timelines of disease that bring a new urgency to our consciousness…and your timeline, in the larger picture of all existence, is really no different than mine. We are all blips.

I’m just forced to face my dying blip every day…and I’m the better for it. I only hope the same for you.

In that way of viewing our physical existence, we all have cancer, in that we all face down death. And every one of us has the choice to spend our days in either petty distractions, frustration and regret, or in seeking valuable experiences, passion and excitement.

If nothing else, never forget that.

Run With The Foxes 10 Mile Trail Race – Race Report

If there is one constant in the world of the diseased, it’s that nothing is constant. Nothing is predictable, for better or worse.

Leading up to this race I was tentatively excited about my running progress, being able to put in a couple weeks of pretty consistent running with only minimal issues from chemo side effects. My legs felt stronger, my lungs expanding, and although I continued to hit a wall at about mile 3 during all my runs, I could still get through the varied 6 to 8 miles. I even put in a full hour on the trails of Brown County, a running duration I had not achieved in quite some time. Still, I say everything was “tentative”, because I’m never sure what is going to happen each morning I wake up and put my feet to the cold, wood floor. Sometimes I have to stabilize myself against the wall from the pain. Other times, the blisters on my feet shoot warning shots across my path. For the past couple of weeks though, I’ve been able to hold the problems at bay…tentatively.

This time, a couple consistent weeks of running created the expected blistering I’ve come to accept as an unfortunate trade off. The two days before race morning I babied my toes with opened sandals, zero running and a building nervousness that this race might have to be endured more than enjoyed. I only hoped the pre-race adrenaline might quell the pain far into the run…so imagine my surprise when I put on my trail racing shoes at the last second, went for a precarious jog up the road and found almost no pain at the end of my feet. The blisters were there, but the rubbing was not. In concert with the ability to run freely in the moment were refreshed legs, filled with a strength and responsiveness I had not felt in some time, no doubt aided by the two days off prior. To put it succinctly, I felt far better than I ever expected.

Still…I was not out to compete. I was out to simply run the course with the hopes that building foot pain would stay manageable and I could finish with enjoyment instead of relief.

———-

We gathered around the starting line after pre-race instructions and I tucked myself in a few rows back, admittedly, in a position I’ve never allowed myself to be. It felt awkward, but safe, and respectful to those going out to kill it. We pinched the watches on our wrists, the countdown dissipated, and with a chorus of small beeps we all pushed forward up a short rocky section of fire road that would bring us into the singletrack snaking through the forest. The top of the hill leveled out and I stayed tucked in with a larger group of runners while I watched the faster runners try to move ahead and begin stringing out into place. I wasn’t breathing hard and felt my gait restricted in a lack of effort.

“Nope…this isn’t going to work.” I thought to myself.

I immediately ran to the outside of the group and simultaneously passed about 10 bunched together runners, at the tail end of the faster runners stringing out ahead, just as we turned down a steep decline with sketchy, rutted footing. The line ahead moved into the forest like ants following the path of those in front of them while I played it safe, still unsure of my strength and fitness for this distance, securely sitting behind a couple runners with greater speed than those behind me, just as we started hitting the climbs that defined this area of the forest. It was these climbs that compelled me to play it safe.

Unlike the trail hills I’m used to running, these go quite vertical, marked only by switchbacks so steep that squared posts are burrowed into the trail as natural, makeshift steps. One doesn’t so much run these as merely pick your way up and over each, trying not to catch a toe and smash a shin into the sharp angles of the wood. The inclines quickly pulling away any quad strength and stored breath you withheld up to this point.

I worked my way up these steps, letting my lungs go and trying not to overexert my quads, pushed up against the back of a runner directly in front of me doing the same. I probably could have passed him on the climb, but wanting to rein in my ambition, I stayed at his back. We crested the incline, rolled through the woods some more, and then down a hill where he started to get away and a couple runners behind me started moving up behind. I instantly realized I was taking it very easy on the downhills in an attempt to keep from pounding the sensitive soles of my feet, in hopes that I wasn’t building increasing pain for later in the run. I simply wasn’t descending with the abandon I’m accustomed to…but that was ok. Still, when we hit the forest floor and started the next climb, I was immediately back on the runner in front of me and getting away from those behind. They were naturally faster on the descents, but as I’ve come to realize over my years of racing, I’m strong when unrestricted or faced with obstacles and adversity…such as hills. And I didn’t so much take advantage of that, as I had no other choice.

At the second portion of snaking singletrack on the forest floor I was breathing down the back of the runner in front of me…almost literally. I worried about annoying him being so close, but more just felt restricted in my gait, so although I wasn’t out to compete and trying to play it safe, I called out,

“Passing on your right.”

I made the move, got out in front of him, and with little more effort suddenly found his footfalls fading and the conversation between the runners behind me slowly drifting further and further back. I was now simply running my own race….and it was going to stay that way. Now it was just me, the course, and the distance…competing against who was going to break down first.

I continued alone through the woods, feeling relatively strong, pushing through the abbreviated breaths on the inclines and saving my legs on the descents, but taking every opportunity of relatively level trail to push ahead and keep pace and rhythm as I felt most natural, always assessing my strength and potentially increasing pain burrowed into my shoes. The pain was holding off, however, and I was bolstered by the realization.

I wasn’t in the clear though. For the first half of the course, the inclines were still marked by the strength sapping steps that forced me to pick my legs up higher than I would have liked, exerting more effort and less speed than can be defined as trail “running”. At some point, I made the decision to utilize “power hiking” as it is called. The thoughts of Anton Krupicka came to me when he described the crucial strength he saved in scaling back in effort and resorting to the seemingly unnatural tactic of bending over, putting your hands at the top of your knees and striding out up the hills. Doing so immediately puts the breath back into your lungs and saves your quads from excessive damage with little gain.

So yeah, I thought I’d try that…and it worked!

When I pushed up an incline until my breaking point, in lungs or legs, I scaled back to power hiking until I conserved enough effort to get to running again. I didn’t have to do this on every climb, but when it became a necessity, I went to it without reservation, finding an incredible relief and moving up on a string of 5k / 10k runners our course had merged into.

And with this new tactic that I have never felt compelled to utilize in the past, I was still able to keep a controlled, but relatively fast, pace through the forest, enabling me to actually enjoy the run instead of forcibly endure it. I felt the same sort of euphoria that keeps bringing me back to the woods over and over – this sort of strength, speed and emotional depth that is unparalleled anywhere else. I was, as I’ve humorously been calling it lately, “Legolas-ing” that sucker. You know, imagining flying through the forest with a swiftness and grace, maybe carrying a bow, shooting down Orcs without breaking stride…you know…LEGOLASING IT!

Anyways, I was enjoying the race, and with my strength remaining intact as I continued to move deeper into the woods, eating up distance, passing aid stations and short course runners, the thought hit me….

“Wait. There weren’t many runners in front of me when I made my moves early in the race. And there’s a good chance they are probably doing the half. So…am I WINNING the 10 miler? That would be pretty neat.”

I gave it little thought more, however, as I still wasn’t trying to compete. I wasn’t trying to stay ahead of anyone or pick off the runners ahead. I was only concerned with eating up the miles and trying to finish before the pain set in.

And it did start to set in. But not how I expected.

My feet remained solid, not building the abrasion I’m accustomed to after the repeated friction during twists and turns throughout the trail. Instead, I felt a weakening throughout my muscles. I had not run trails this hard in a long time, and although I could get away with doing so for a shortened duration, I was also trying to complete 10 miles, which I also can’t remember the last time I finished in one continuous stretch. The effort was going to take it’s toll. At first I felt my lower legs giving out as my ankles began to roll on less stable portions of trail, forcing me to concentrate more on footing and catching my form before injuring myself. Doing so brought the effort to my quads, where enough strength still remained to move me through the woods, but the succession of downhills and inclines began doing their damage as well, ever so slowly building a weakness…leaving me with little except the relief of a finish line.

Without mile markers along the course, I had no idea if I was outrunning the building weakness, still unsure if I was going to beat the course or the course and distance was going to beat me. Then I heard sounds on the trail, like talking…or singing, only to come running by a discretely placed speaker yelling out the lyrics to “What does the fox say?”, but not in earshot of the finish line PA system. I still didn’t know how close I was to the finish, but estimated I had about 3 miles to go.

Just then I popped up to an aid station where my running friends Scott Breeden and Becky Boyle stood, cheering on friends. Breeden yelled out as I ran by, “1 mile left!”, and I was stunned. So much that I yelled back,

“Shit! Really? Hell yeah! Thanks!” and continued on with equal parts relief and excitement, allowing myself the satisfaction of extra effort to the finish despite my fully weakened lower half. I knew then I was going to win this race…not in placement…but in effort, in overcoming my compromised strength and getting through a distance I wasn’t sure my body was going to endure. I passed the final group of onlookers standing at the junction for the 10 milers and the half-marathoners, pounded down an unforgiving asphalt road and up into the makeshift finishing chute, pinching my watch one last time to complete the run. 1:18:00 flat.

—–

Ultimately, I discovered I DID win the 10 miler, which, I won’t lie, was an encouraging realization…a little icing on the cake, but didn’t mean a whole lot to me really. I was there to test myself, to see what has happened to my body since feeling a little more consistent in my running, and to push against the always prevalent side effects I continue to endure. So, the real accomplishment and satisfaction for me wasn’t that I finished the race, but that I finished it with enthusiasm, with a relief from the effort, not the pain…that I regained another moment of my previous life by running with an effort (seemingly) almost devoid of cancer and chemo. I don’t know, it’s hard to describe. I just felt more myself again. Less like a charity case, a pity party, an “inspiration”…but just a strong, swift runner. In that moment, I won.

——

I need to give special mention to Robert Gee who, out of the blue, offered to pay for my entry into this race. I didn’t even give it thought to run until he made his generous offer, and in doing so gave me this opportunity to prove myself…to myself. I’m incredibly grateful for his gesture.

I’m equally grateful for the friendship of everyone in the community I got to share the trails and morning with, whether it was words of encouragement on the course, short discussions and new introductions after, or extended time spent when it was all over…the whole experience always means more than I probably let on at the time. So thanks friends. I hope to do it again soon.

Defining Definitions

There is certain language that has developed around ideas of disease and the culture of those afflicted with varying maladies. Most notably, there is the label prescribed by the individual, how they choose to view their situation and define it for themselves, and the way others see us. For the better, the focus is on the positive, giving hope to the afflicted instead of assigning them more dire terminology. The word we hear most often today is, “survivor”. We don’t speak of the diseased as “patients”, “diseased”, or “cancerous”. We focus on the potential, the hopeful.

But I don’t…sort of. I have a bib from the Team In Training century ride I did last summer, a special bib given to those of us in the group dealing with any form of cancer directly, or who have overcome the disease. “Survivor” is plastered across the top. I didn’t know I was getting that bib during the pre-ride dinner and I was both flattered (for the attention) and a little uncomfortable with the definition. I try to choose my words well. I don’t like to exaggerate, romanticize or sensationalize, and I certainly don’t like to cheapen others experiences with my words, which is why I felt uncomfortable being recognized as a “survivor”. I may be SURVIVING cancer, but I haven’t survived it. I’m not a survivor. I reserve the term survivor for those who have outlived their cancering process, or who have at least outlived it once.

I don’t mean to take away from any one else’s experience, but I feel most comfortable placing myself in other categories, with other definitions. I am not a survivor. I am, however, a “thriver”. I choose to keep pushing against the force that cancer has pushed onto me, managing through the painful and problematic effects of chemo treatments for experiences as fulfilling as I can find. I did this before cancer and I have yet to find good reason to stop now. Nor do I feel the need to internalize the suffering cancer patient identity, but am compelled to thrive through this experience…if I’m forced to choose. But it’s not always so positive and romantic. Sometimes, like tonight, I skip the run to instead nurse my feet…pop all the blisters and just lie in bed if I need to get specific. That’s hardly a moment of thriving.

Lately, I’ve come to accept the neutral ground of terms once again, where I don’t feel pressured to live up to any lofty presentation of my life or succumb to lesser perspectives. Right now, if we’re talking about terms…I’m simply a “cancer patient”. I say this because it is the absolute reality. I am a patient, often. I am a patient when I get chemo infusions every few weeks. I’m a patient every morning I take my chemo pills. I’m a patient when I go in for my CT scans. And I am a patient when I enter the hospital for surgery in August. Being a patient is a prominent part of my life.

I’m also patient. I’ll wait this damn thing out until one of us cracks.

But, without exaggeration, I often feel like a cancer patient more than anything else. And that’s how I choose to define myself to others, because I have yet to survive cancer, and I’m not always thriving, but I am continuously and consistently dealing with cancer, in the long, drawn out middle of it, it seems. I’m not pre-cancer and I’m not post-cancer. The definitions for those individuals have been established and you all can keep them. I’m just not there anymore…or yet.

But I’m also not JUST a cancer patient.

The header at the top of this blog classifies it, in part, as “competitive distance running”. And all those are sort of true. I can honestly say I do still run distance. Hell, this weekend I’m scheduled to do 10 trail miles at the Run With The Foxes race (thanks for the comp Robert!), and I won’t be walking it. I’ll be running. Now, the competitive part is a little more precarious. We could romanticize the whole affair and say cancer is my competitor right now, but I’ve moved away from the idea of being in a “battle” with cancer or “fighting”, or any other such terminology. And when I’m not training, it’s hard to say I’m competing for anything…but I keep it in the title anyways, because I’m stubborn for one, but also because remembering how I defined myself before the mess of this past year helps me look ahead to when I can solidly stake that claim again.

At one point I thought about taking out the “competitive” label and adding a new qualifier, something about dealing with cancer, you know, just to give a heads up as to the blog content. But, as defining as this period is in my life, I want to ultimately view it as episodic, like a running injury, something that is recognized and then passes, not something one internalizes, dwells upon and defines themselves by. No runner gets injured, heals and then says, “I’m an injured runner.” We simply experience the adversity of the moment and then move on, always as a “runner”. Matter of fact, we feel the most like runners when we can’t do it, which is probably the most important reason I keep that competitive qualifier in the title. I feel the most competitive now because I’m not able to be. It taunts me.

And that’s ok. Because it keeps me from dwelling on my identity as a “cancer patient”, giving in to it as a small form of giving up. I am a cancer patient due to the reality of my circumstance, but it’s not ALL I am. I tell you, when I’m running through the trails during the first half of my run, it’s like I’ve entered a dream state, and I honestly, genuinely question if I even have cancer. It seems the furthest thing from my physical reality, and the idea of being a defined “cancer patient” seems alien, foreign…laughable.

Ultimately though, that is what I am. A competitive, distance running, cancer patient.

And at some point, if it comes to that, I’ll make the decision whether I want to self-identify as a cancer “survivor”, but I can guarantee you, I’ll never give up my definitions of being “competitive” or as a “runner”…not during cancer or after.

More Fire.

————

(All this, of course, also goes for being “vegan”)

Promotions and Things

Prior to diagnosis I was asked to contribute a piece to the anthology, Running Eating Thinking, by Lantern Books. After a couple revisions, the editor and I decided to cobble together a few blog posts that followed my health news, which became the final submission for this book. After a year of waiting, the book is finally available to the public and I’m flattered to be sharing page space with a list of great writers and personalities. All proceeds of book sales go towards an animal charity still to be determined by the authors.

Learn more about the anthology and order through the following sites:

Lantern:
Amazon
Goodreads

I was also recently asked to contribute to a few websites regarding my running, health perspective and cancer circumstance. The first of those three is now live and you can read my interview on Kale Or Be Killed‘s “Meet Me Monday” series. Kale Or Be Killed (the Bad Girl’s Health Club) is a site dedicated to veganism and good living, with a humorous approach.

That’s it for now…I’ll share links to the other sites when they go live.

Prayer Works…For You

Let me preface this post by saying I have almost written about this subject numerous times since diagnosis, but withheld in concern of offending well-meaning individuals who have verbally extended their prayers to me. The concerns remain, but I hope to explain myself well enough that you understand I mean no harm with my words. Just hear me out (or don’t, I understand).

With that said, I also want to mention that the persons involved in the incident I’m about to iterate may very well read this post, but again, although my words may be quite bold and unbending, I mean no insult.

So!….

Since diagnosis, many people have come to me with support and encouragement, offering prayers towards me or simply letting me know they are praying for me. I appreciate that. Because I’m pretty upfront about my beliefs…and lack thereof…these prayers are sometimes prefaced with statements about our differences. I respect that. I really do. But I’m not going to mince words here…the act of prayer and assumptions tied to prayer can really come off as arrogant, disrespectful, or at least, without consideration of what might be respectful for the one being prayed for. Admittedly, it’s tricky, because those offering prayers feel they are doing the best thing they can for the recipient and would be incredibly confused if you were to respond with offense. Let me detail the incident that compelled me to write this….

I was working at a coffee shop yesterday when I ran into an old friend and her husband who I know more casually. They are religious. I talked to them for a few minutes, updating them to my current health situation and what lie ahead, when as we were saying our goodbyes, the husband put out his hand and said,

“Do you mind if I say a prayer for you?”

Thinking he was going to do this INTERNALLY, I consented and went to shake his hand, at which he grabbed onto it and started praying…outloud…right there. I respectfully went with the flow, allowed him to have his say, at which point he ended with, “In Jesus’s name”. I thanked him, said I appreciated it, and they left.

I was taken back by this gesture, and although I did appreciate the care and concern extended towards me, have felt uneasy about it ever since…hence this post. So let me get this out there.

I respect their beliefs for themselves. I think those beliefs are intellectually and philosophically absurd, but I do respect their decision to hold them and would never say otherwise. What makes me feel uneasy, however, are the many complicated dynamics that surround the idea of prayer and it’s offering towards others. I will get to as many I feel necessary in this post, but we need to clarify something else first.

Non-believers (or OTHER believers…we certainly have belief, just not in god) are often angry, frustrated, resentful, and otherwise put off by religious expressions and rituals…for good reason. Religion – speaking mainly about christianity here as it is the dominant religion in our culture – is intrinsically linked to a history and culture of which it has had great influence. Within this history and dominant culture also lie many horrendous acts perpetrated by the influence or dictates of religious thought. Pedophilia, genocide, stifled intellectualism, shame, fear, etc. That influence is far from gone today and is where the resentment of many non-believers lie. It is one thing to hold a belief, but it is another to engage with the dominant political process in a way that attempts to restrict the freedom of others based upon that individual belief. Whether we speak of the right for privileges gained through marriage, freedom of choice, free expression, etc., the dominant religious force has often been one of oppressing freedom and not fostering it.

Granted, INDIVIDUALS who associate with a specific religious label may not hold to certain beliefs or engage in the political process, precisely in order to avoid the offense of restricting others, but the associations still remain and it becomes tricky for the non-believer to wade through the complexities to find where one stands exactly. So when religious expressions are foisted upon us, we resist, and are compelled to give no form of consent or approval what so ever. This must be understood. It is one thing to disagree with our chosen morality…it is another to use yours to influence our lives and restrict the physical resources we depend upon.

This point may have sounded like a tangent, but it is an important clarification as to why these seemingly compassionate acts, such as prayer, carry with them a weight of offense.

PRAYER WORKS…FOR YOU

I believe prayer works…for the one praying. It offers a sense of agency over problems one encounters, say, being helpless in the face of another’s disease. Prayer gives the praying relief, but it does nothing for the other. It can, on the other hand, act as a stress reducer for the diseased, potentially altering the physical processes within their body and helping change an overall diagnosis…but the prayers themselves do nothing. Let’s be blunt about that….because false and failed hope can be more devastating than the ravages of disease itself.

Let’s also be blunt about the absurdities of the prayings intentions. For if a believer truly knows that prayer works, why wouldn’t they then pray every second of the day, for the myriad of issues facing humanity (and non-humanity)? Why would they not pray only for the most exaggerated of requests…for the end of poverty, the end of environmental devastation, the end of disease? Why would they choose to waste time praying for the healing of just one individual (instead of an entire people) or something as benign (and selfish to their species) as better weather? If this god figure does “grant wishes” so to speak, is the one praying making a deliberate attempt to “be reasonable” in their requests? If prayer truly does work….why not go all out?

But of course, “the lord works in mysterious ways”…or, “god has a plan”. Ignoring the first hyper-simple dismissal of reason, the second REALLY bothers me. For, in relation to prayer, what exactly is gods plan…and why are you going around asking that god figure to change that plan to suit your needs? That sounds quite selfish. But let’s consider the idea that god does have “a plan”. First things first…what exactly defines that plan? Is it everything that happens in the world, both what we perceive as good and as bad? If so, does that establish pre-determination? If not…then how do YOU determine what is part of god’s plan and what isn’t? Was, in your worldview, me getting cancer part of god’s plan? If it might be…why ask for cancer to be cured? If it isn’t part of god’s plan…then does that mean I deserved to get it…or if it isn’t taken out of me, that I brought this upon myself. Or if it isn’t part of god’s plan…then what happened to all the prayers for those that didn’t survive disease? Of course, the safety in all this is that no one CAN determine what constitutes this supposed plan or not. One can point to various moral guidelines in the bible (or any holy book), but this doesn’t nearly comprise an entire plan. The fact is, in the perspective of the believers, no one knows why certain things, good or bad, happen. Sure, “good” things (selfishly defined) are ascribed to god and “bad” things (also selfishly defined) are ascribed to “evil”…or whatever…but it’s only those that study and consider physical processes who can point to verifiable cause and effects, or theories.

So, again, if prayer truly works in the indescribable ways that it is said to work (and not just pleasant coincidences) then please, by all means, save your breath on me. Pray for the end of cancer, the end of MS, the end of AIDS, the end of all you perceive as “bad”.

I don’t mean to continue shooting holes in the idea of prayer…as these considerations are quite obvious, if not often ignored. That is not my intent here, but addressing them is still important to my overall point.

SAVE YOURSELF

What I’m more concerned with is the recognized and unrecognized intentions of those that offer prayer to others. The individual that prayed for me in the coffee shop, in a way, was simply offering a gesture of care towards my situation, but it’s hard to ignore the perceived power he felt the prayer held. It is in understanding his perspective that I feel uneasy. But even more so, there is the element of “display” that left me feeling a bit intruded upon. I respected greatly that he asked me first if he could pray for me, but I assumed he meant that he would do this privately, internally and silently. I didn’t realize he meant to make a display of it, myself becoming an unwilling accomplice in presenting prayer as a viable strategy or belief. I don’t like to give support to systems and beliefs I don’t agree with or find detrimental if I can so avoid it (which is why I don’t stand during the National Anthem either), but his assumption that he could engage me in public with this act was certainly off-putting. Not taking into account that he wanted to express he cared for me, I don’t know why his prayer had to be WITH me, or even spoken. If the prayer truly works, it can be done silently, continuously, while sipping coffee, while shoveling cake in your mouth, while running, while driving, etc. etc. And I know people engage with prayer in that way, so if he was really just wanting to say, “Hey man, I care about you and hope you get better,” then he could have said, “Hey man, I care about you and hope you get better” without bringing in all the cultural and religious baggage that I alluded to at the beginning of this post. And people have said as much…and I felt cared for, supported and encouraged without reservation, without feeling like there was an ulterior motive.

But let’s be blunt again. Christianity is founded upon the idea of the saved and the unsaved. It is a ministry. It is evangelical. It is missionary. It requires those who have deemed themselves as saved, to harvest those who have not been saved. I am the latter, of course, in their eyes. Or not…I don’t know how many people know my beliefs, though I make little reservation about them. I just know that when someone wants to physically engage me in prayer, they are saying much more than just the encouraging words coming out of their mouths. They are praying for both my quality of life and that I will, in their eyes, stop being so ignorant of their perceived truth. That’s annoying. That’s also the premise of missionaries.

And I bring up missionaries because there is a parallel to their work in other lands and my current situation. I bring up missionaries, because I can think of few groups more offensive than those that enter into other cultures (that is often the case, no?) with the idea they will help them be better, wiser, more truthful, more honest. Those of us in the United States, where the missionaries I know come from, know the score. We know missionaries prey/pray upon the desperate, the “less culturally advanced” to “show them the light”. We know, despite the myriad of problems here, that missionaries go to other lands because they can prey upon their need for water, food and health care (as if we don’t have those problems here in the U.S.) to bring a new truth, a new culture and a new sense of smugness as countless people are “saved” by their good acts. I’m sorry…it’s hard to bite my tongue about this. And I’m sorry I’m not sorry. Because I can’t help but draw a parallel between that sense of arrogance that compels churches to spend significant amounts of money sending missionaries to other lands who are more desperate than those here, and individuals who come to me with expressions of belief and prayer due to my perceived moment of desperation. That is offensive.

No one ever approached me and prayed openly for me when I was in emotional desperation over not being able to see my son. No one ever approached me with prayer when I was laid off work. No one ever approached me in public with prayer when my marriage ended abruptly. Why is my disease such a sense of desperation that prayer now becomes a viable strategy? I think I know why…and it’s the primary motivation for most people’s theism in general…life and death. I’m apparently much closer to entering the sinner’s world of fire and pain (or whatever y’all believe happens now) than I ever have been, so the stakes are raised, and prayer is a last resort. The phrase, “in prison, everyone finds jesus”, rings true (or so it’s thought) because prison is a realm of desperation and people are looking for the emotional solace they can’t find in their physical state. Disease and death, for many, is no different. But I’ve made it clear over and over. I don’t need saved. I’ve created a life I don’t need saved from and when all is said and done…there is nothing to be saved to.

Some of you disagree. I know. That’s fine. But please, respect others as individuals confident in their own beliefs, their own perspectives, their own cultures, and their own rituals. I would never restrict others the right to perform ritual for themselves (but leave the animals out of it), as long as it is kept to themselves. My rejection of prayer is not a dictate for others to reject it, not at all, but rather a request that you engage with prayer personally and meet others on their terms.

A LESSON LEARNED

I was caught off guard by this individuals request for open public prayer, and so I consented to his undefined request. If could do it again, knowing that the prayer was going to be an open display, this is what I would have said,

“Thanks friend, but I don’t want to make a show of anything. Feel free to do so privately though. I really appreciate it.”

And I do appreciate it. Disease is hard to navigate for many people, especially between strangers, so the act of expressing care for someone can be awkward and take many forms. I feel I have done a pretty good job tolerating (for a better term that escapes me right now) other’s religious expressions towards me in this somewhat difficult time, but I also feel it is important for non-believers to express how these actions feel towards us. On an individual level, and I speak for myself, I interpret these gestures as friendly and caring and kind…but on a deeper level, it is hard to separate them from the prevalence of arrogance, opportunism, and restrictions of freedom that mark religion and theism in our dominant culture. It would be good for all individuals of belief to recognize these woven dynamics as well.

Ultimately, if I were to offer advice for the religious, it would be this. Be religious. Be spiritual. Be ritualistic. But do so internally or in (sub)cultures and spaces where the beliefs and actions are permissive. Bow your head for dinner in a restaurant, but don’t expect everyone else to join in.

And towards those in desperate circumstances that you know are non-believers. Simply offer caring words with no external baggage. Tell them you are thinking about them, that you care about them, and are hoping for the best. Those expressions will do more good for us than you can ever imagine.

Run For Your Life

Cancer or no cancer, when I’m out running in a public area the often whispered, sometimes yelled, reactions are the same. I come up behind a couple or group of runners plodding along at their respective pace and as I run by I’ll hear an abrupt break in the conversation or a quick statement followed by either a laugh or affirmation. I take them all as compliments. It’s as surprising as it is encouraging at this point considering I’m running past them at a compromised 6:30 or 7:00 pace, where I used to easily flow down the trail around 6:00 pace (much to my coach’s frustration). Still, relative is relative. In the past I let the comments come and moved on without further consideration, but now, it’s harder. There is a part inside that wants to stop, turn around and calmly say,

“Yeah…and would you believe I’ve got cancer?”

Then turn and keep going. Now…I know this comes off as arrogant and mildly confrontational, but that’s not how I mean it at all. What I want to do is take the opportunity to give voice to another way of living, to show that disease isn’t always a death sentence, that even through so much struggle and adversity we can be more than we’re told. Because the perceptions I’ve seen given to the public (and back to me) is the withering, bald, bone thin (ok…I’m probably not too far from that…but not from disease) patient with a 10 yard stare. I’m not that.

I’m the runner dying (literally?) to get back to running. I’m the guy that, unless you look really closely, can’t tell is suffering from both a disease and a cure. And I’m not the only one. Not by far.

With that said, however, I do struggle. As I run by, you might see a runner’s physique and a pace that belies any physical restriction, but what you don’t see is the increasing pain building at the bottom of my feet and the inadvertent “marathon face” spreading as I wince from the sensation. You might look past the piece of plastic protruding from my chest where they plug in the IV to drip toxic chemicals into my body every few weeks. You might not see the scar bisecting my abdomen in two…the first of at least one more. You won’t see the dry, cracking creases of my fingers or blisters on my toes. You also won’t see me lying down on the bed at home after the run, the motivation lost to put more pressure on my worn feet just to get up and brush my teeth. You won’t see me wince in pain as food and drink struggles to push past the cancer mass as they move through my intestines. There is a lot you won’t see in me…and so many others facing disease.

But you WILL see me running down the path, winding through the trail, cresting the hill with suffering lungs and strengthening legs. And that’s ok with me…because that is STILL just as much a part of my current reality as the setbacks are, and that’s cause for celebration. I’m not free to run without restraint, but I’m also not bed-ridden and holding on by a thread.

In fact, the past couple weeks have been great for running. I’ve put in a significant amount of miles after being constrained by side-effects for so long and i’ve been able to build more and more strength and endurance, so that I can still manage to illicit those broken conversation responses when I run by, and I can manage the frustrations of my circumstance through the successes of my physical abilities. At times, when I let my mind wander, I feel so close to my past self that I forget about cancer and run with the emotional freedom I once had, where I’m running for progression, and running for the sake of running.

But sometimes…it’s different. There is another motivation that pushes me on.

Laura and I drove to Brown County to do some trail running after a recovery day off, rested and ready despite this being the end of my pill week where the side effects build and I worry about walking around the house let alone putting continuous pounding on my feet. Regardless, I woke up ready to go and knew I could put in at least 30 minutes of running on the trails…hopefully more. We made it to the trailhead under overcast, but dry, skies, and I stripped down to the bare minimum (shorts, socks and shoes), hit my watch and bounded into the woods away from the trailhead. I felt smooth, strong…the word “swift” came into my consciousness, and aptly described the experience. I was swift, moving through the trails lightly, deftly avoiding the turtles as they moved onto the open, groomed dirt. My legs were not heavy, my breathing in control. THIS is the trail running I know, where I feel I can run all day, forever, my mind as excited as my body. But I knew this would change…no matter, I was holding onto this sensation for as deep into the woods and the run as I could go.

Further and further I ran until suddenly I was close to my 30 minute turnaround, tempting the fates of my increasing physical pain. I spun a 180 at 30:00 on the dot and kept pace back the way I came, when suddenly the skies gave up and started raining down on the canopy of leaves above. They let go more and more and it started raining, coming close to pouring, but the temperature was so warm that it kicked my adrenaline higher and I was running over and around puddles like a child, barely caring about the effort…just having a pure fun I haven’t felt in so long. I continued moving, dancing around puddles, leaping over slick rocks, and feeling connected to the trail as I always have in the past…but then the pain built.

I felt my face grimacing with the effort and my lungs pounding to the breaking point as I crested the inclines, and although I was still feeling the joy and empowerment of the effort, the new motivation began rising to the top….the motivation that has encompassed my other runs as the effort gets harder and harder, weakening my legs, weighing down upon my lungs, whispering me to back off…and I respond…

“Run for your life.”

I keep going. I don’t let the strain and the struggle wear me down, because the stakes are higher now…there is so much more on the line. I’m don’t feel like I’m just running for a new PR, a podium placement at a goal race, an goal and accomplishment strategically out of reach…now I feel like I’m running for my life. I have no evidence or studies showing my running is helping me keep cancer at bay (in concert with my treatments), but I have to believe it’s not hurting. And further more, with the second HIPEC surgery looming just a few months out, EVERY SINGLE RUN is an attempt to get stronger and stronger, to make sure I’m as healthy as I can possibly be when I enter into that world of hurt and am relegated to the hospital bed, immobile, filled with poison, for days…weeks…months even. When I’m out there suffering against my side effects or pushing the limits of my legs and lungs, I think about how every tiny muscles, every extra red blood cell is only going to aid me in getting past the destruction of surgery and back to running as soon as possible, always with the hope that I’m doing so cancer-free, or at least that much closer to being cancer-free. I deeply and genuinely feel that when I’m out running…I’m running for my life. The threat being real, proven, and almost immediate. It adds an intensity to my running I haven’t felt before, a new motivation bordering on desperation.

I pushed through the last 15 minutes of my trail run, still feeling amazing and “swift”, in my state of trail running euphoria, but also with the fear of surgery pushing me from behind when I wanted to back off and give my intensely pained feet a rest. That comfortable place in my emotional cocoon, running through the forest, where I simply don’t have cancer….was replaced with the physical struggle reminding me that I do, very much, still have cancer, and that I was very much running for my life.

If that is the motivation that carries me past my surgery, then so be it.

But I imagine my running life back to normal, back to the days when motivations were measurable and abilities were unrestricted, as I broke conversations when I ran past, just as I broke PR’s at the end of my races.

In a way, we all run for our lives, though I hope you are never forced to feel the immediacy of the phrase. Rather, I hope we can always run for the joy of our lives and not to simply hold onto them.

——

More Fire.

Sharing Too Much

I liked to joke that my cat was the most anarchist cat in Indy. Not because she had a defiant, care not attitude…quite the opposite actually…and not because the anarchists named her “Desire” (I always hated that name), but in part because that is where she came from after being essentially abandoned at the collective house when it shut down. I discovered her in the middle of the winter with an open bag of cat food strewn on the floor and a water bowl frozen to the rim. I took her home with me and there she stayed for the next 9 years.

I called her the most anarchist cat in Indy because, well, she lived with me for one, but also because she ended up living in so many anarchist houses. First it was the collective house, then my apartment where we would throw dance parties and paint political banners, then another collective house, then another house that was a hub of anarchist activity, and she event spent a short stint at the “anarchist cabin” in North Carolina. In total, I think she lived in approximately nine different locations before I settled in my current house.

She lived a lot and endured a lot through it all. She lived by herself, then with another cat, then 8 other cats, then back by herself and finally with one more. She was always happy by herself though, preferring to be left to her cat business instead of having to face territory confrontations. She just wanted to enjoy the cat life. And in that cat life she endured an abscess in her chest that was so deep I worried she might die from it..but she didn’t. Then last summer she hid a wound on her hind quarters so big and round the vet didn’t think they could pull the skin together to stitch her up, and therefore would have to put her down. Fortunately, her large mass and thick skin was plenty enough for stitches and she lived on, though she had to wear a cone for something like two months.

What always amazed me about her was that she simply endured all these life changes and physical issues. She never whined, cried or even became angry through it all. She simply endured it, as if to say, “Ok, this is happening. Let’s just wait it out and get on with being a cat.” I see she was very much like me in that way and how I have chosen to handle my current complications.

Ultimately, Desire was my friend. And I didn’t realize it until last night.

For the past two weeks I noticed she wasn’t at the front door when I woke, ready to explore the neighborhood…or just the neighbor’s porch who enjoyed her company and left food out for her. Not taking advantage of food is NOT like Desire. I would go into the basement and find her laying on her favorite couch, just enjoying her space. But then, when she would make appearances upstairs, sometimes to sleep at the foot of our bed where she endured our inadvertent kicks, I would pet her and noticed her spine prominent through her skin. I thought that was odd, but as each day passed I started to feel more and more of her spine and bones pushing through her fur.

One day I opened the front door to watch her walk onto the porch and just lay down, as if exhausted from the effort of walking outside. I think then I knew something was wrong. Wondering if she had been avoiding the new brand of dry food we bought, I got her some wet food, shut her in the room with us overnight and listened to her devour it as we tried to sleep. Good….she was eating. I gave her another can in the morning to make sure she was eating it, and watched her devour it again. I was encouraged….but then I saw her abdomen struggling with breath. I called my old roommate, who is a vet tech, to come and look at her and without much reservation, he told me I needed to take her to the emergency vet right away.

And that was last night.

As soon as they saw her labored breathing, I noticed a new sense of urgency in their actions and yet a resolved tone in their voice. Desire wasn’t going to make it. Still, we ran the X-rays and they gave me the diagnosis. She had fluid in her lungs and fluid in her abdomen, pressing on her lungs and making it difficult to breath. There was something else on the X-ray….a fist sized mass near her abdomen.

Cancer.

I struggled to answer the questions thrown at me about her options, my throat choked up with emotion. We shared so much over the past nine years and now we even shared this awful disease. For me, though, I have options. Desire didn’t. Anything they attempted would most likely not work and she was at near death, to the point they strongly suggested I not take her home for the night as she wasn’t going to make it.

And so I made the decision to put her down. It was a rough night. I carried her heavy body in a cardboard casket out of the vet clinic and placed her in the back of the car. I laid it on a blanket in the garage last night, and woke up knowing I would have to bury her in the morning. I picked a spot by a flowering bush and dug a small grave, placing Easter flowers at the head.

And with that I lost a friend. How much a friend I didn’t realize until the house was that much more silent without her. She wasn’t at the door and she wasn’t in the basement. My friend is gone.

We couldn’t communicate in the way human friends do, of course, but we communicated regardless. In the way humans and animals relate, with that physical connection that is really separated by so little when we actually spend time around non-human animals. We did share a lot. Multiple homes, trips in the car, weekend moments on the couch, hours in bed after my surgery, and just the daily interactions inherent among housemates. And suddenly that’s all gone. I only wish I could have had one more night with her in the knowledge that it would be the last.

I’m not going to lie, this affected me more than I realized. It’s one thing for nature to take it’s course and let an animal die in relative peace (before the pain sets in), but it’s another to actually make the decision to end a life…to turn off the switch of existence. I’m still struggling with that decision, if only because I have the decision to continue on despite my dying condition, and yet I made the decision not to continue on for hers. I don’t care how right it was, the act is difficult to internalize and process.

And then, it had to be cancer right? Of all the experiences we shared, I wish we didn’t have that one, although it didn’t seem to get to the point that she was in difficult pain. She just knew her time was coming to an end. I did find a small amount of amusement in the way we dealt with our circumstances. Cats are so much smarter and in tune than humans. She knew something was wrong and so began her slow dying process, keeping to herself and just waiting it out far ahead of time. And what did I do? Keep running like nothing was wrong, telling myself all the crazy things happening to my body would pass and I probably just had too much to eat the night before…until I could barely walk in pain. Humans are stubborn idiots sometimes.

And…I’ve chosen not to dwell on this, but there were a lot of moments of internal fear and panic in the vet last night, when they asked if I wanted to be with her when she passed, when her sudden degeneration was coupled with the knowledge of her cancer. It was impossible not to remove myself from the comparison and wonder what my future might hold, how loved ones around me would react to my potential degeneration and end…I just couldn’t. I couldn’t not consider all that…but I had to stop. This isn’t the time for that.

Ultimately, this story doesn’t have a happy ending. I’m still fighting back tears and feel the sense of loss when a friend is suddenly gone from your life. I’m going to miss her beautiful face and kind, sweet nature. It would have been nice to have her company after surgery this summer, but I go on knowing that I did give her a good life for the time she spent with me, even if sometimes I subjected her to far more cats than she cared to tolerate.

I’ll undeniably miss her, but her character certainly won’t be forgotten.

My Desire.

Thumbs down. Hopes up.

If I’m being honest…this sucks. This really really really sucks. But if I’m being honest…I’m doing pretty good. Very good actually. But again, if I’m being honest, this really sucks. And, if you want, I can keep going back and forth like this, because that’s really the honest truth. This situation really sucks, but I’ve found a way to make the most of it. And that is what I want to continuously reiterate in my blog, Facebook posts, instagram images and real life conversations, that the reality of living with disease is never one or the other. It’s a spectrum of good vs. bad, or juggling both at the same time. But it’s very rarely one or the other, depending on how you choose to view it.

It’s kind of like the weather. It can be cold outside…very cold, like we had this winter, but that doesn’t mean you have to hate it. You can choose to enjoy it, enduring the sting of the air, while you wait for the seasons to change and the warmth to take over. Living with disease isn’t much different. It is understanding that the situation isn’t ideal, but knowing that you can choose to make the most of it until it either runs its course or you find yourself on the other side of desperation.

What I really have trouble tolerating are the absolutes. The always positive affirmations. Or the always negative darkness. Living with disease (or adversity) isn’t an all or none prospect. It’s why I cringe at the unceasing flood of inspirational messages in social media, the photos of mountain tops and empty phrases written in bold, encased in boxes, telling you to LIVE YOUR DREAMS! LOVE YOUR LIFE! LIVE AS IF EVERY DAY IS YOUR LAST! Sure, yes, do that…but with temperance, with perspective, with the knowledge that the other side of the spectrum is necessary as well. Why not, EMBRACE YOUR ANGER! RAGE AGAINST THE OPPOSITIONS! PUT YOUR HEAD DOWN AND WAIT! Because the reality lies somewhere in the middle, in the fluctuating circumstances of our existence. It’s ok to hide in the shadows for awhile. There is nothing wrong with you. And it’s ok to be joyful in the light, even through the obstacles of disease. There is nothing wrong with you.

It is the reality of those of us facing down disease, living everyday with the knowledge that we are both whole and yet broken. It is also what those on the “other side” must understand, that we may look ok…but in an undeniable way, we aren’t. And yet, that even though we aren’t ok, we are also quite good. There is a very wide spectrum in the diseased state that can’t be avoided and it’s important that we express every part of it and that it is understood by others. It’s not easy, for both of us, I know.

I went in to the oncology office this week for my scheduled chemo treatment, a somewhat disturbingly routine affair at this point. So routine that I forgot I had a CT scan the week before and I would find out what the latest results of my prognosis were. Admittedly, I’m less concerned with what’s happening inside me now that the second HIPEC surgery is scheduled for August, but still, I was mildly embarrassed when my medical oncologist said,

“You had a scan last week and the results are the same. There is no new cancer growth, and maybe it looks a little better if anything.”

I was also a little surprised that I didn’t have much of a reaction to that news either, mainly because I knew it wasn’t going to change my chemo schedule and I would still have to endure all the side effects of the process, the “thumbs down” part of this experience.

But then I mentioned the pain I was experiencing in my mouth, which I learned was an expanding pus-filled abscess most likely caused by bacteria build up and a lowered immune system due to continuous chemotherapy. Thanks cancer. Surprisingly, my oncologist called off the chemo treatment for the day and rescheduled it for two weeks later, wanting to avoid any drug interaction or further complications with the treatment I was scheduling to receive to remedy the problem. I’m going in to have some skin cut away and stitched up tomorrow, which I’m dreading to the utmost extent. But, it has to be done.

We then talked about my physical activity some more, how much I was running and cycling, etc. With his usual disassociated banter, he joked about how fast I was running and why I didn’t run slower. I told him the quicker I ran, the quicker I finished and could get off my feet. I explained I can really only get in about 4 or 5 miles comfortably and 6 or 7 if I push through the pain, to which he inquired if I was going to run the mini-marathon (13.1 miles) this coming weekend….as if he didn’t even hear what I just said. I explained again that I’m lucky to get in 6 miles…

“But, can’t you just run slower?” he asked.
– “Well…no, I still have trouble with my feet. They are still a mess.”
“Yes, but if you just trotted along, couldn’t you finish?”

And we went back and forth a little more on this, when I realized he was either really bad at sarcasm or simply doesn’t understand what hand and foot syndrome is really like and how debilitating it can be. I couldn’t help but feel a little frustrated. Does he not know or not care what his patients have to endure? Does he really not know? And if the doctors don’t even understand how awful this situation can be, what about everyone else?

This is what compels me to continue being as honest about my situation as I can be, so that other cancer patients don’t feel so alone and the non-diseased have a greater picture of what we have to endure and overcome. I try my best not to be so “woe is me” and whine and complain away my issues, but I also don’t want to hide them from anyone. They are my reality, just as my successes are as well. I hope I’m still painting a complete picture, showing that we can overcome our physical complications and live our lives as best we can, but also giving us room to back off and rest and hide in the shadows when it gives us comfort or we feel we have no other choice.

Last week I ran, a lot, relative to what my physical level has been. I was excited and motivated and felt I could continue on, but knowing that I would have to take a break at the end of my pill week as the side effects from chemo built to an apex. And they did. I woke up Monday morning and almost fell over walking to the bathroom, the skin on my right foot so worn and sensitive that each step felt like the skin was going to tear in two and bleed all over the floor. On top of that, the pain in my mouth was growing and growing. The next day, when I’m usually recovered and ready to run again, I was useless. It was only Wednesday that, after my abscess ruptured Tuesday night, and the hand and foot syndrome subsided, I was able to get in a run on the treadmill. A powerful 6 mile progression run that started at 7:30 and ended at an encouraging 6:18 pace. I was excited again and ready to go at it some more, but today the wear and tear on my feet from the run had me limping in pain all day, knocked back down again…the back and forth of my efforts against my chemo mimicking the reality of my life.

I can be great and able and yet worn and broken…at the same time. And that’s ok. As much as that sucks, that’s ok, because that’s the reality of my existence and I accept that. I don’t accept that I have to be cowered in the corner, waiting away the death creeping in, and all the same, I don’t accept that I have to be a warrior of positivity, shouting inspirational phrases and being a superhero for cancer patients. I don’t. And no one does. All I have to do is be honest and genuine, and diseased or not, that’s all I hope everyone else can be too.

I hate my situation. I hate that it’s not a guarantee that I will see my son graduate 8th grade or high school. I hate that I may not get to build all the experiences I wish for with Laura. I hate that I may not be able to test my uninhibited running abilities again after the drugs have permanently flushed from my body. I would trade all the good I’ve discovered through this experience to have never begun cancering in the first place.

But I love my situation. I would not want to lose the friends I’ve found through all this. I would not want to have not met Laura or shown my son what is possible in the face of adversity. I’ve been able to grow in so many ways that I’m not sure I would have discovered without facing this down so concretely, but if I’m being honest…

This still sucks. It really really sucks. But this is good. This is really really good.

Ultimately, this is just honest. This is reality. This is the spectrum of living. This is putting my thumbs down as the expression of just how shitty this is, but keeping my hopes up knowing that I’m still here to experience it all. I hope you understand this dichotomy and I hope you embrace your own. No matter the physical circumstances of our existence, how we maneuver through them is all that matters. I believe honesty and an embracing of all our emotional capabilities is the best course. That has, for me at least, kept me from emotionally losing it through it all.

Thumbs down. Hopes up.