Because We CanThrough the month of August, Run Vegan will be used to promote a fundraiser I have initiated on behalf of Family Reach, an organization that helps cancer patients and their families manage finances during treatment. Please visit the DONATE page and contribute to helping me raise $50,000. Follow along as I prepare for and run down the State of Indiana the last week of August. www.stayclassy.org/becausewecanrun
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Anyone that has been through a Ragnar can attest to the depth of experience that evades description, whether from failing wordsmithery or a simple accumulation of worthy events they were unable to retain. I am no different. For example, for the life of me I can’t remember handing off the slap bracelet baton to my teammate Christine at the end of my second leg, which admittedly was run in the middle of the night, but no matter. I spent a good hour on my drive home trying to bring up that memory and just can’t do it. That is also telling about the Ragnar experience, as the entire two days, from start to finish, are juxtaposed as a conflict between deprivation and fulfillment. And sometimes, the deprivation of sleep erases some of those moments of fulfillment. That exchange was one of them. Who knows how many others I’ve already forgotten. Fortunately, there are enough memories retained to retell, and although I’ll never do justice to the entire experience, for lack of bandwidth if nothing else, I’ll share a few dynamics of the endeavor to attempt a decent overview.
“We Eat Our Veggies. You Eat Our Dust.”
The two Ragnar Relays team Strong Hearts Vegan Power ran prior to Cape Cod involved, what seemed like to me, mind-boggling logistical coordination. There was team registration, an understanding of the “Ragnar Bible”, shirts to be printed, 2 vans to be rented, gas to be paid, food, nighttime running apparel, and overall coordination in getting everyone to the start and the finish. I don’t know how the initial team captains pulled it off…but they did. After the last two years, I decided I wanted to step up and ease the burden, but little did I know to what the Cape Cod logistics would amount. In short, they grew threefold.
They grew threefold, because the hype we built with the two races prior resulted in a flood of interested runners when we put the call out on the internet. Not only did we have one team of 12 runners ready to go right away, then we had 12 more, and suddenly 12 more! I dare say, if we kept asking, we could have had another team. Ultimately, we decided it was best to cap everything at three in fear of what the organizing might mean. Then after getting all 36 vegan runners on board, we followed that up with 6 vegan van drivers, and the required 6 race volunteers (who I think all might have been vegan as well!). We didn’t just have a team…we had an army.
But an army of the nicest, intelligent, most compassionate people you’ve ever met. I wish I could profile each and every runner as we all have a story worth telling and I didn’t meet a single runner on the team that I wouldn’t be proud to call a friend. From the dedication and passion of Jasmine Singer to the quiet speed of my van mate Christine Tylee to the unreserved hilarity of Martin Rowe to the shining positivity of Aaron Zell, I wish all 36 of us could have rode in the same van.
Surprisingly, despite being separated into three teams and those three teams into two separate vans, spread throughout the 200 mile course, we all seemed to remain connected and engaged. That became increasingly solidified at the end of the race when each team gathered to run with the following coming in, until the last of our teams neared the finish line and all 40 some of us (runners, van drivers, volunteers) flooded the finish line in black shirts…like an army. It was a beautiful sight.
It would be a disservice to try and detail our connection further, but suffice to say I feel as if my own personal army of friends has grown threefold…and I can’t wait to see what comes next, whether we find ourselves crammed into an increasingly cluttered van or simply enjoying our new connections in less adverse situations.
Trials (of miles)
“Naughty By Nature, Countin My Kills.”
The Ragnar Relay is comprised of 12 runners (per team) covering 200 miles, each one running 3 legs of varying distances. Each runner will complete one run in the middle of the night or sometimes two in the dark, depending upon your placement. Understandably, the combination of sleep and nutrition deprivation begins to take it’s toll as the hours and miles add up. No matter how hard or easy you run your distances, there is a point where you question just how you’re able to continue with some semblance of respectful speed or effort. I can admit that my last run, despite being only 1.6 miles, was a complete effort with poor results…but with good reason, which I want to detail.
My first leg was the longest of the race, being 12.8 miles, just shy of a half-marathon. Deemed “Wicked Hahd” by the pronunciation challenged East Coasters, I would even receive a special medal for my effort upon completion. I won’t lie, I was intimidated by the distance and made a point to study the elevation changes for proper control of intensity. The course started off with a relatively steady climb, dropping only briefly, before capping out around 2 miles. At that point it dropped somewhat sharply towards three miles and continued a rise and fall pattern towards the 11 mile mark where it began to climb back up to the finish at 12.8. This was going to be no joke. Add to the length and difficulty of the course, I haven’t had much confidence in my ability to run far and fast for quite some time, experiencing a predictable rise in heart rate and crash of speed and strength as the distance wears on. I expected no different from this run and prepared to suffer towards the end.
I lined up under an overcast, grey sky, the wind coming off the ocean chilling the 46 degree forecast and shivering me against the air. I waited in an unceremonious and minimally populated exchange point, teammate Micah Risk keeping me company as we waited for Scott Gilroy to complete his run and send me off to eat up the distance. One other runner stood by me waiting for his turn as well. A familiar black jersey with big block letters that read “VEGAN POWER” came into sight as Gilroy flew down a steep decline towards me in the exchange. I hit my watch and pressed out of the chute towards the immediately climbing road as the runner next to me did the exact same.
We started off together and I fought the competitive urge to keep pace with his rhythmically spinning legs, but even so, I felt like the effort might be too ambitious. I was just off his back as we began climbing and climbing and climbing. My heart rate expectedly rose a bit as we began moving up the hills, but I was pleased to find it wasn’t immediately spiking as it had in the past, and I was able to stay with this other runner as we began passing slower teams. Now comfortable with the pace, I committed to staying at this effort until I crested the hill and determined how I felt. That’s when the other runner suddenly created space between us. I caught him looking back every once in awhile as the second between us doubled, then grew to three, then four, then five. He was getting away, but I wasn’t panicking. My only concern was getting over the hill without completely ruining the rest of my run in the process. My heart rate and subsequent crash lay somewhere further into the run, and I would meet it there rather than right from the start.
The hill topped out at 2.0 miles and would then drop almost a complete mile, quite drastically. Drastic enough that when I started on the downhill I was instantly back on the runner that got away from me on the climbs, and then he was next to me, noticeably braking against the descent, and then behind me as I let gravity dictate my speed, trying to manage that comfortable space between braking against the road and yet not letting my quads get pounded by gravity. I feared that I might be quickly sacrificing strength, but encouraged by starting to leave behind the runner I thought might get away from me, just said, “Screw it…let’s go with gravity.”
All the way through the mile I bombed the course, excited to feel the sensation of speed in my body as the trees and runners flicked by me like blips and blinks. I was undeniably MOVING. Even better, my lungs were resting from the aid of the descent and the building suffering was staying somewhere further down the course. And yet, the descent wasn’t going to last forever, as the course began to work against my efforts.
To my surprise, though, I had strength in my legs…and my lungs…a lot. I wasn’t running at the downhill bomb pace from the mile prior, but I was in no way slowing…I was still MOVING. Quickly. I had a strength in my legs that I hadn’t felt in LITERALLY years. I began climbing the hills, rolling back down the other side and then climbing back up, but shockingly not feeling the building fatigue I have since resuming training in November. It hit me…something was different.
There was little time for consideration though, I was running strong and fast and enjoying the hell out of it! Not only did my body not resist against my efforts, but my mind followed in step, almost daring my body to go faster with excitement! I, however, resisted that and kept working to eat up the distance.
I’ll tell you though, that excitement continued to grow as I met each rise and crested it with the same level of strength to keep rolling hard back down the hill and back up. Sometimes, I noticed, I was running STRONGER up the hills than when I was going down or on the flats. It was like my body had finally turned on, or my training, with a little bit of rest and tapering, was finally paying off.
It wasn’t just the strength that refused to leave my legs though, it was also my lungs. 5, 6, 7 miles into the distance I was pounding out a rhythm in my chest that didn’t fade, didn’t weaken, didn’t change from “THUMP, INHALE THUMP THUMP” to “THUMP THUMP INHALE THUMPTHUMP THUMP”. It was consistent. It was familiar. It was MINE. By that, I mean, it was the rhythm and power and unweakening beat that filled my chest for every race I ran prior to my cancer diagnosis, prior to the year of chemo, prior to the two surgeries I underwent.
And in that moment of realization, I swear I could have either broke down crying with relief or took off into a full on sprint of adrenaline and euphoria.
So, I didn’t break down crying or take off sprinting, but I also decided it wasn’t time to hold back. Running with what felt like a proverbial fist of personal victory in the air I kept launching myself at the hills, pushing up each incline with the mantra of overcoming in my head, “Don’t let this hill break you. Don’t let this hill break you,” before letting loose down the other side with a separate motivator, “Let go. If anyone is behind you, make it hurt like hell to catch you.” Hill after hill I climbed with a driven anger and flew down the following descent without worrying about my heart rate going out of control or my legs breaking with the pounding. I just kept attacking and attacking, going into that mental and physical space of intensity that demands full concentration…where I haven’t been in years.
Right then, I wanted to tell my teammates, I wanted to tell Laura, I wanted to tell anyone that understood…”You’ve gotta see this! I can’t believe this is happening! Look what I’m doing!”
I know it sounds a little romanticized and ridiculous, especially considering my pace still doesn’t rival my pre-diagnosis abilities, but the experience, the FEELING I had in my body was undeniable. It was the old me. I hadn’t forgotten…I just hadn’t felt.
I refused to look behind me. I refused to check my watch. I refused to do anything that might break this moment, that still felt somewhat fragile, as if the crash was still just a misstep or significant hill away. But I knew I was getting close. Then at 11 miles the course rose again until finishing at 12.8 miles under the almost darkened sky. I ran at the hill, my legs continuing to burn and weaken, but always recover at the short moments of relief in elevation, climbing and climbing until I could hear the familiar cheers and noise that comprises each exchange point. By now many teams and teammates were watching and cheering in the runners who agreed to this “wicked hahd” leg, signaling the finish with blinking lights and audible exclamations heard down the course.
With an unexpected level of finishing speed in my body at the end of this near half-marathon, I started my usual controlled kick, picking up pace as I got closer and closer to the finish, finally making out my teammate Christine with her arm outstretched, waiting for me to slap the bracelet on her wrist. I pushed in as fast as I could, catching onlookers making statements of surprise, reached out to slap the bracelet on Christine as she took off down the chute and then slowed down and put my hands on my knees for that moment of unparalleled relief.
And yet, I was hardly tired. I was fatigued, undoubtedly, but I could barely contain the excitement of what just happened to me through those almost 13 miles. I had run fast. I had run strong. I had run with an effort I was able to maintain through the entire distance, worlds away from the runs I had pushed through in all my training since November. I had, it felt like, finally cashed it all in. I was the runner I have been seeking since pre-diagnosis. I was the runner that set my PRs, that crushed my first marathon, that won races and felt consistently superhuman. Forgive me if this sounds overly self-absorbed, but I mean it with great humility, I had found the runner in me I wasn’t sure I would ever meet again. Truly.
If I was somewhat insufferable to my teammates for the time after my finish, repeating statements of self-congratulation, forgive me…that run was more than just an awesome run to me. It meant something much deeper and exciting. It proved to me that I’m haven’t completely lost my previous running self to cancer and treatment. Even recognizing that I will be wiped back to zero after my next surgery in October, there is still hope to experience this, even just once more, before that happens. To have felt it that night, however, was satisfaction enough and I plan on riding this high for as long as I can.
Granted, I finished with an average pace of 6:15 for the full 12.8 miles, which is nothing to write home to my past self, but acknowledging the long climbs, I also recognize I was running well into the 5:30s, maybe faster, on the descents, without tiring to the finish.
And that run alone, among all the wonderful, exciting moments of the Ragnar weekend, made the entire experience worth it.
The Strong Hearts Vegan Power team, as a whole, is somewhat unique to a Ragnar Relay. More a compilation of pun-enabled themed teams in a roving, rolling, running party, team SHVP and our political base and promotion are a little out of place, which admittedly, suits us just fine. The first year we formed SHVP at the Adirondacks Ragnar, I distinctly remember feeling on edge, on the defensive, as we were boldly claiming our ethical veganism to the other teams…sort of. I mean, we were, but I also know we were more interested running AS vegans, together, than trying to be evangelical. Still, we’ve come to accept a certain sort of reaction, rarely positive, when it comes to airing our veganism to the public. Ragnar, surely, would be no different.
But then, it was. As the day (and night) (and day) wore on, more teams interacted with us, were supportive, asked us questions, sent fellow vegan runners our way for food, etc. Our defensive wall began to come down and I’m not afraid to admit I felt a little bad for putting it up in the first place, potentially showing our team as unfun, unengaging, angry vegans. Fortunately, we salvaged ourselves from that stereotype and had an amazing time and really great impact when all was said and done.
The next year, feeling less defensive, was all the same. We had come to realize that people actually LIKED US (I know right?), for what I believe are specific reasons, which I’ll detail below. Despite a few snarky or joking comments, our overall impact on the Ragnar environment was noticeable and positive, so this year we took it upon ourselves to maximize that impact, and not just for ourselves. Instead of running AS ethical vegans and FOR ethical veganism, we also decided to run as an act of support for the animals we seek to liberate through a fundamental shift in cultural consciousness. We decided to use our team as a fundraiser for Tamerlaine Farm (a sanctuary for rescued animals started by our teammate Peter Nussbaum and his wife Gabby) by having sponsors contribute to the farm and raise money through supporters on a Tamerlaine fundraising site. In the end, I believe we raised over $2000 for the care of their animals.
About our impact during Ragnar though…
I’ve thought about this a bit and I think we experience a different reaction from our fellow Ragnar teams than we do from “normal society” for a few explicit reasons.
First, our aesthetics. Ragnar is comprised of literally hundreds of teams with varying organization. Some of them show up in coordinated outfits, often costumes, while others show up in matching t-shirts or tech t’s, and still others in whatever they usually run. We, however, make an effort to print racing jerseys and hooded sweatshirts for each Ragnar, in unmistakeable black apparel with bold white print. When we step out of our vans, we are all always wearing the gear, and we make an impression, undoubtedly. We look cohesive. We look organized. We look professional. And we look serious. Imagine that visual if you will, 36 to 42 people walking into a crowd of runners, while all wearing black hoodies boldly printed with the words VEGAN POWER in white on the front. Then the back printed with an image stating “VEGAN FOR THE ANIMALS”. Again…we were less a running team and more an army.
And that sort of aesthetic statement isn’t accidental. Many of us have been vegan for 10 to 20+ years and we know what it is to represent ourselves in a way that garners some manner of respect, in an attempt to garner the same respect for the animals we want to represent. If we showed up as a stereotype of ourselves, wearing hippy sundresses and rose-tinted glasses…we would be a joke. Our veganism is not a joke and we wanted to make that quite clear.
We are ethical vegans running for the animals, and where years ago, that would be inherent…now things have gotten muddled. The new trend of “plant-based diets” that ignore the physical and emotional lives of animals for personal health and performance has begun to overtake the stereotype of vegans, leading people to believe we are “health nuts” or whatever. And yeah, most of us do value our health (we ARE runners), and it could be argued that is part of our team’s promotion, but fundamentally we do this for the animals and want that to be very clear, hence the “FOR THE ANIMALS” statement on the backs of the shirts. Couple that statement with our aesthetic approach, and our seriousness can’t be denied, which I think informs the reaction we get from the other teams.
Personally, however, I’ve often worried about being perceived as “evangelists”, sort of taking advantage of the Ragnar culture to “spread our message”. As an individual who has a strong distaste for the Christian faction of evangelism, I feared being side-eyed with the same distaste. There was talk at the first Ragnar of handing out Why Vegan pamphlets during the exchanges, and although I think leafletting has it’s appropriate time and place, I also think the Ragnar is not it. The fundamental reason to sign up for Ragnar is to 1. Run. & 2. Have fun. Political flyering would probably not go over well, rightfully so, but running under the banner of our ethics isn’t so frowned upon…for a couple reasons that follow.
1. We have fun. Yeah, we’re committed ethical vegans, but we’re also awesome, hilarious individuals. The other teams love us (as we love most of them…even the bacon themed teams), probably in part, because we have Martin Rowe on our squad. And a speedo wearing Jeremy Ritz-Totten. And the most foul-mouthed, but lovable, neck-tattooed human you’d ever find in Jonny Hero. I could go on…but suffice to say, I dare you not to enjoy our team when we’re out on the course.
2. We’re fast. No, seriously. This year, with enough runners to build three teams out of the mayhem, we decided to compile one team of our fastest runners to be competitive. We discussed the possibility of winning the whole thing…and we almost did! We finished in THIRD overall (out of 540+ teams) and FIRST in our Mixed-Open Division (The most populated division). Yes. First. Trust me, in running, there is a certain respect that comes with being fast, so to step to the line against other runners, while we’re looked up and down with a certain stare that either borders on disdain or annoyance, it speaks volumes when we suddenly run away from those stares without looking back. Quickly, that annoyance turns to something like admiration. From the very first Ragnar is wasn’t uncommon to hear, “Dang! You guys are fast!”, “What was your pace?!”, “The vegans are fast!” It was AWESOME.
So, let’s put all these dynamics together.
We show up in force.
We are aesthetically intimidating.
We are organized.
We are deliberate in our message.
We are HILARIOUS.
And we are FAST.
And it’s not to say we are BETTER than other teams, but just that because we are coming to Ragnar with a different approach, we could be perceived as “not playing along”, or subjecting ourselves to ridicule with our non-pun-themed team, but that’s not what happens. We set ourselves up to be seen, respected….and enjoyed. And if you think I’m romanticizing the reaction we get from the other teams…I think the statement from the announcer as all three teams crossed the finish line sums it up quite well. He said,
“And here come all the vegans!…surrounded by butterflies!…EVERYBODY LOVES THE VEGANS!”
If that’s not a positive impact for the perception of veganism, for the promotion of animal liberation, for our teams in general…I don’t know what is. And we’re not done yet. See you at the Adirondacks Ragnar
We could not have pulled off the potential logistical mayhem with such ease and success without the help from our sponsors. They supplied us with energy, funds for the team and Tamerlaine, and even some of our runners! We are so grateful for their contributions and we strongly suggest you check them out and offer the same support in return. They are all truly fantastic companies and people doing wonderful work.
I was going to write up a race report from last week’s trail 15k, because it went pretty well and I experienced some noticeable progressions in my fitness during that race, but more important perspective has been strung together for me in the recent weeks and all that needs addressed.
Two weeks ago I went in for another CT scan to determine if my tumors had shrunk, grown, spread, or remained stable. The follow up was this past Wednesday, where I went through the now oddly casual routine of meeting my surgical oncologist to receive what could be triumphant or disastrous news. Admittedly, the first time I had a follow up last year, after my first surgery, I was an emotional wreck as is to be expected. This time, however, it was like a routine check up. I know that’s a dangerous place to be, emotionally, just expecting everything to be business as usual, or maybe it’s just a recognition that I have no control over my body’s cancering and all I can do is respond to the results. Regardless, I drove myself to the follow up with very little apprehension.
While sitting in the waiting room a couple came out through the doors where the exam rooms are lined up, probably in their 50’s, and the woman visibly shaken. I didn’t linger my gaze, but it was obvious the woman was holding back more tears. They sat across from me, saying little, and with distant stares that I could read very well. Things were not well and they were faced with a great trouble of which I couldn’t assume, but could probably guess. After minutes of tense silence she couldn’t hold back her thoughts,
“I just don’t understand why we’re told one thing and then we come here and they tell us something different.”
No sooner than the man tried to respond, who I now understood was the one with cancer, the scheduler popped out of another door and called them back. It’s an odd thing, this other door. It’s not the one you enter for the exam rooms, but is it’s own separate space where you go after your exams. There is another door in that room where the scheduler enters, as if she is some “woman behind the curtain” type figure that just appears magically. But you aren’t happy about it. This room feels almost like punishment, or a test. Patients sit in the waiting room and take note of everyone that comes out. If you exit the exam rooms door and head straight out, it’s like you won. You’re free to go about your days and maybe check back in the future for another scan, another test. If, however, you exit the exam rooms and sit back in the waiting room chairs, it means, in a way, you lost. You’re anticipating the dreaded call back into the other room with the scheduler.
The scheduler is the staff member that sets up your surgery. This is why you don’t want to be in this room. Or maybe you do, it depends. She goes through some formalities with you and then asks quite directly, “So when do you want to do this?” As if it’s nothing more than taking your temperature. It’s an odd thing to shift from this moment where you are waiting potentially life changing news to having to just spit out a date for surgery, as if you’ve processed the emotional burden in the five minutes you were sitting in the waiting room. There are, of course, so many dynamics to consider.
What does this mean for my job? (if you are able to work)
Do I have enough money to get by during recovery?
Who do I need to see and what do I need to finish before surgery?
Will everyone be taken care of?
What am I not thinking about?
Some people who have to make these considerations are in a better place than others. I am one of the lucky ones. My cancer grows so slowly that I have time to wait. I can put off surgery until after I’ve spent the summer with my son, completed my fundraiser, or simply organized my life to make this as unproblematic as possible. Others, well, aren’t so lucky. Their cancer is fast growing, life-threatening, and it doesn’t matter what you need to make happen, surgery needs to happen right away. So I felt for that couple called back to the scheduler’s room, because I remember being in that emotional place, frustrated at the changing information, having to make quick life decisions for surgery, and knowing that meant things were really really serious.
I don’t like to get too close to cancer unless I have to, or choose to, but it was good for me to see this couple, to remember how fortunate I am to be in this current moment where I’m doing so well, not so burdened by the what ifs and can still plan my life out when cancer forces its way back into my consciousness. And that’s when I was called through the first set of doors.
The process remained the same as the nurse took my vitals, chatted me up about the weather, and then sent the Fellow in to practice some patient/doctor relationships. As I’ve continued to reiterate in the past, cancer patients should listen to their Oncologist’s Fellow, but take what they say with a grain of salt. They aren’t always up to date on your situation and are really just practicing for their sake rather than yours. That’s fine…just know that’s what’s happening in case they tell you something totally wrong, which I’ve received in the past.
Admittedly, this Fellow was very nice and personable, actually telling me he was excited to meet me as my oncologist had been talking me up to everyone (which is great to hear). Apparently, since my situation is so unique and positive, I’ve become something of a reference point for other patients, an example of a success story. I told him, for selfish reasons, I appreciate being that example…but I’m also glad to offer something of hope for others as I really enjoy hearing other people’s cancer success stories all the same. No matter how brief a moment it can be in someone’s life, just knowing cancering CAN be overcome is very important. He then went on to say that I’m doing so well and since I’m getting so far with this, that they “have to throw out all the books…there is nothing to reference anymore”, which I think was in relation to surgery. I’m not sure how true that statement is, but I can say it was as exciting and encouraging as it was quite frightening. I don’t really want to be the one in “uncharted territory”, where changes and adaptations in my cancering process have left no previous guidance to follow. But hey, here I am, and I can’t really complain about that. A few more formalities and the Fellow left to send in my oncologist.
Since the Runner’s World cover experience, the connection I’ve had with my oncologist seems to have grown to a more personal level. I know he really enjoyed the article, was a previous runner himself, and appreciated my gratitude towards his work…how couldn’t I? He reiterated that I’m talked up to a lot of patients he works with, complimented me on “bulking up”, and went on to explain that my scans were as stable as they had always been. The tumors have simply not grown since the first scan last year after the initial surgery. He might have mentioned nominal growth, but nothing of concern. They had not spread and they had not caused further complications physically. On the contrary, since not being on chemo, I’m back to 80+ miles a week of running with a full set of workouts and am slowly feeling the fitness progressions, leading to his observation of my “bulking up”, which admittedly is a pretty fun term to ascribe to my body type. Then again, surgery is such an incredibly wasting process that since he last saw me, I probably did look noticeably more muscular in my body.
Then he dropped the relative bomb. “So…when do you want to do this?”
Just like that. The third surgery. I knew this was coming and in a way I HOPED this was coming, but, I don’t know, it just didn’t resonate as positively as it did the last time. When I went in to meet with my oncologist before my surgery last August, I honestly didn’t know if surgery was an option. I was neck deep in chemo and for all I knew that was going to be my life until…forever. It sure seemed that way. It was awful, so when he excitedly said we were going back in a second time, I was damn near ecstatic, which is a funny thing to feel about having your body split in two and wasted away to nothing. But then it meant that I was off chemo and might have another chance of being past cancer and could get back to running. Two out of three ain’t bad, I guess.
So this time, I consented to the surgery plan again, because I know it’s my only hope to be past cancer, but consented without as much enthusiasm. Actually, there was a bit of dread. And it’s all related to the life and strength I’ve been able to build back up since last August, not even a year ago.
Last September I was recovering from the second surgery at an astonishing rate and just started getting back to running. Since then I’ve gone from run walks, to consistent efforts, to full weeks of running, to 30 miles a week, to 50, to 80+. I’ve gone from 5 mile runs to 20 miles runs. I’ve gone from 9:30 minute miles to 6:45 minute miles for long runs. I’ve run strong workouts, throwing down 5:40 miles and running quarters like I never had to stop. And I’m not even close to done. I’m still struggling, yes, but the wall of progression that seemed so definitive during my training continues to crumble bit by bit. I’m can look ahead and see myself getting faster and faster. I can push my boundaries and see better workouts, faster mile times, quicker intervals, more and more. I’m not done.
As a matter of fact, next week I’m doing the Cape Cod Ragnar and my first leg is 12.8 miles, a damn near half marathon that I would love to test myself in…though I’m going to end up just short. I feel like I’m very close to putting in an effort that doesn’t feel demoralizing, and although isn’t where I want to be, is honorable enough for my standards. Then the week after I’m pacing my friend, Andrew Peterson (RW cover contest finalist and Special Olympian), through the Region 8 Spring Olympics Opening where we are going to attempt to run under 10:00 for the 3000. 10:00. Yes, that scares me. That’s a 5:21 / mile pace. I have SERIOUS doubts that I’m there yet…but we’re going to try, and I’ve been gearing my training towards this incredible goal for both of us. And, of course, there is the Because We Can benefit run in August, where all my training will be headed towards after the Special Olympics opening. I have a lot of running and progression to look forward to.
But there is a third surgery. And where it was an idea leading up to this last scan, it’s now a reality. And that window of opportunity was given a tentative shut date in late September, after I’ve spent July with my son and after I’ve completed the Because We Can benefit run down the State.
I wasn’t really prepared for the emotional frustration that would put on me, but I’ve been feeling it this past week since the follow up, swinging back and forth between the excitement of my training and the almost depression of realizing it’s all going to come to an abrupt halt. In the moment I can’t help think, “Why bother?” Why am I pushing myself so hard when I’m going to be knocked back to zero after simply laying down on the hospital bed. There are, of course, so many reasons why, but in the moment it’s hard to reconcile them.
I left the exam room and headed out into the waiting room where a few new patients were sitting. I wondered if they had been there enough to know about “the other room”, and I wondered if they were anticipating having to enter it after their appointment, or if they were waiting to see if I was as well. And I was. I sat down and distracted myself flipping through my phone.
The door opened and my name was called.
I tried to respond to the scheduler’s questions with some level of positivity and enthusiasm, but I couldn’t shake the feeling that this surgery wasn’t being met with as much hope as my previous appointment. We discussed my life obligations in the coming months and decided September might be best. Going through the Tuesday dates (Tuesday is surgery day), she started rattling them off.
“We’ve got the 8th, the 15th, the 22nd, the 28th.”
I thought about it momentarily and debated the 22nd. But then it hit me.
Wait…that’s Laura’s birthday. And the day my sister died from her cancer. I wondered if that was a somewhat momentous day and the surgery on that date was fitting, or if it was too emotionally loaded to add to my loved one’s burden. I opted for the 28th. Then with little more formality, I left the room, past the waiting patients and back into my life with little change except a new perspective on the coming shut date of my window of opportunity.
And I can’t shake it.
Since that appointment I continue to have incredibly encouraging runs, showing me that my fitness will continue to return. To what extent? I don’t know, but I’m being shown time and again that I am building endurance and gaining speed…slowly, but surely. Then today I ran down to the Mini Marathon to cheer in some teammates and watch one of the runners I coach go for another Half PR (he got it!). I knew it might be difficult being in that exciting race environment, debating all the what if’s and could I’s and all that, but I needed to be there for others. I’m glad I went. I ran into my old coach at one point and he said what I was thinking, of course, “Do you wish you were out there?”
“Of course…I’ll always wish I was out there.” But I still need more time to know that being out there means I’m running as strong as I can and, more importantly, FEELING as strong as I can. I could have run today, and run fairly well, but I would have suffered and suffered hard. Not just physically, but emotionally, and that’s not why I run. So as much as I wanted to be out there today and as close as I’m getting to be there again, I just wasn’t ready today.
But it did light another fire in me. It did reaffirm that I NEED to test myself, that I’ve put in so much work and it’s not ok to keep pushing without really testing my abilities, honestly. Not in a Ragnar. Not in a pacing situation. Not in an ultra run. But in a race, where I’m not racing against others, but figuring out what I’ve been able to accomplish in that environment. And yet…there is that window, now getting ready to shut.
I walked out of the appointment room with a tentative date set for September, but watching the runners today and on my way back home, I started to think of alternatives. I started to look ahead and see if there was just one moment, one race, where I could put this mind and body on the line before that surgery wipes me out again. I don’t want to fully admit this would be “one last time” at these abilities, but I’m not sure what will happen after this third surgery. What I have is what I’ve built right now, past the ravages of surgery and chemo, and it would be disrespectful to myself to not test it.
Of course I mentioned this to Laura when I returned home and before I knew it we were considering what races might lay out ahead near my surgery date. There was talk of the Chicago Marathon and some local Halfs, but when we figured out what would be best for seeing my son and not pushing the surgery out too far, it seems the Runner’s World Half on October 18th will work. Granted, I need to have this confirmed with my oncologist, but I don’t foresee any issues there. That means surgery might get pushed to October 27th. Admittedly, this all needs to be confirmed with my oncologist, but for now, this is a pretty solid plan for us, and will enable me to prepare emotionally, physically, and financially, and to go for it one last time before surgery…to see what I’m capable of, to see how strong I can get, and to finish one more honest race before that window firmly shuts again.
Then we start all over.
Today is the 2 year anniversary of the first surgery to get rid of my cancer. It didn’t, of course, but it helped get me to where I am today, while inflicting a considerable amount of damage to my body in the process. I don’t, however, hold a single bit of resentment towards the treatment or where I am at this point physically, because the alternative was much worse. The alternative was a slow, starving death.
On this anniversary, I considered detailing many of the notable things that have happened to me in the past two years, as I experienced incredible highs alongside the more difficult lows. However, it seems more fitting that I give credit to the doctors, the medical industry, and the many people that took the initiative to save my life, while offering my perspective on the many things I’ve learned about the cancer experience, for there are many. I’ve never been the type of person that just lets life happen to them…I want to understand it, as much as I can, and so throughout the past two years I’ve read books that dealt with cancer from varying perspectives, scoured through articles others have sent me, raged against miracle cures offered on the internet, looked for help with diet and lifestyle, and continuously adjusted my perspectives about the cancer experience as a whole. With all that said I’ve come to develop a personal understanding of the cancer experience (by that I mean – diagnosis, treatment, complications, solutions, etc.) and I feel compelled to offer some of what I consider the more important components. Of course, keep in mind, I am not an oncologist, a nutritionist, or a research scientist. I am a continuously learning cancer patient and that is the only “expertise” I can claim.
The point I find I continue to make when discussing cancer is it’s complex nature. I continue to reestablish this fact, because in a culture that craves simplification, the explanations of cancer are always sorely incomplete and the “cures” are all the same. Sometimes we simplify cancer because, pragmatically speaking, it is most effective. A soundbite to secure crucial funding for research or patient support will never address the difficulty of meeting the cancer problem head on. The public wants to believe we are making progress against cancer, that it’s simply a matter of creating the right drug, that cancer is ONE THING and can be fixed with ONE THING. That is plainly, not the truth. Cancer is complexity. As complex as the processes of evolution, always changing, individualized, cancer is the same.
Part of the problem is our terminology. When we say “Cancer”, we simplify it into a being, a repeated element, but it would be more correct (and frightening) if we used the term “Cancering”, as a verb, as a process…because that’s what it is. And a process is often understood as variated, as something that changes, that isn’t the same with every individual. That is how “Cancer” exists. Cancer describes exaggerated cellular reproduction, but that reproduction rarely takes the same form. It exists in different parts of the body, is spread through various bodily systems, is confined in others, and most tellingly…CHANGES AND ADAPTS. Cancer is so difficult to manage because it’s not one thing…it’s cancering…it’s many things. And not only is it many different processes, it’s as varied as the individual it takes place within.
The “cure” for cancering is so elusive because the process responds to the terrain it exists within, that is, every body. Cancering can be more problematic in some individuals because their body is not strong enough to fight back the errant reproduction. Cancering can be halted in others because the terrain is healthy and powerful. Some drugs work to stop and reverse the cancering in certain individuals, but is ineffective in others due to these complex variables that either aid or restrict the cancering. The treatments need to be as individualized as the individual, but how is that ever achieved?
Cancering is so powerful because it is an integral part of systems of complexity. The more we grasp this, the more we can appreciate it’s role, it’s challenge, and our place within it.
Every patient wants to know, “How did I get cancer?” We want to know what ONE thing we did wrong to get cancer, because, we believe, that will help us determine what we need to change in order to stop it and prevent it from coming back. Campaigns to eradicate cancer often attack with the same approach.
Smoking causes cancer. Stop Smoking.
Red meat causes cancer. Stop eating red meat.
Obesity causes cancer. Lose weight.
Inactivity causes cancer. Exercise more.
Again, pragmatically speaking, this is the only approach to which individuals will respond. And yes, you should stop smoking, stop eating red meat, lose weight, exercise more, etc. etc. etc., but again, it’s more complex than that.
The truth is, cancering happens not from ONE thing, but many things. Cancering can be triggered by lifestyle, diet, environment, and genetic make up, but never ONE of those. The process of cancer is a subversion of multiple failsafes, where errant cell reproduction would be stopped by one pathway, it isn’t, and neither the next, nor the next, nor the next, until reproduction spirals out of control. What we struggle to understand is what actions we can take to prevent these failings, because there are so many. Some of these we have come to understand. We know that smoking can trigger cancering, but there need to be a number of other failures that take place before cancer becomes a fatal concern.
And so, ultimately, we can’t pinpoint a cause of cancer…which makes pinpointing the cure just as elusive. We can understand CAUSES of cancer, but then it follows that we need to understand CURES, plural.
In my personal story, I’ve come to understand that I did “everything right” as far as the advice goes for lowering cancer risk…but that didn’t matter. All it means is that I hold no embarrassment for making poor or uninformed lifestyle choices. I’m not saying I’m perfect, but it does go to highlight the complexity of cancer and the need to stop viewing it as a virus, as an infliction caused by one bad behavior. Many people who smoke never get cancer. Many people who exercise do. So where does that leave us? Nowhere good really, but at least it helps us understand the complexity of the process, and can hopefully steer us away from those who try to sell the “cure to cancer” or give the “secret to cancer” or try to fill in the wide gap of confusion and desperation with diets, programs, shaming, and any other misguided attempt to play doctor, guru, or miracle worker.
Sometimes cancering just begins and we need to be ok saying, “we don’t know why”, as we continue to search for more pieces to the puzzle, which we need to also admit may continue to change, adapt, evolve, and remain elusive.
TREATMENT WORKS (HORRIBLY)
There is so much truth to the saying, “If the cancer doesn’t kill you, the treatment will.” This is, obviously, not always true, but it’s also not always false.
With that said, there is considerable backlash against chemotherapy and radiation as a treatment for cancer, primarily because people feel slighted when they watch their loved ones die from what they were told was the only option. The patients themselves begin to wonder if the physical ravages and side effects are worth the treatment at all, and I won’t lie that the thoughts haven’t entered my mind at times as well. What we must continue to remember, however, is how far we’ve come with treatment and that it WORKS…sometimes.
First, let’s address the “sometimes”. We need to continuously remember how complex and evasive cancer is. We don’t have “the cure” or “the cures”, but rather, we have options. We have attempts. We have success stories of killing cancer in individual patients while the same drugs failed to help others with the same kind of cancer. So SOMETIMES the treatment works. Sometimes it reverses the cancering and never returns. And sometimes the treatment doesn’t work. Sometimes it doesn’t reverse the cancering and the patient dies. This means we can’t make a definitive statement either way. We can’t say chemotherapy / radiation always works and we can’t say chemotherapy / radiation never works.
What we can say is, they are the BEST options we have at this point…which, in a way, sucks. I’ll explain a bit further down. Chemotherapy / radiation are the best treatments we have for cancer at this point because the number of success stories we have with cancer are documented and verifiable. We understand how chemotherapy and radiation affect the cancering process because we’ve studied it, researched it, verified it, and have done so again and again. We know the cause and effect of how it all works. And this is what we must continue to rely up on until we find something better or fine tune the treatment to be as effective as possible while retaining the best quality of life for the patient.
But it still sucks. And that’s ok. It sucks because the side effects can be awful, to put it lightly. It sucks because the ravages of the surgeries and treatments can be long-lasting and permanent. My numbed feet can attest to this. Treating cancer is awful…and that’s ok…because it still works and we have countless examples of treatments for other afflictions that suck…but work.
There is a backlash against chemotherapy and radiation by both patient and caregivers that is emotionally based and, if you ask me, unfair. We don’t like seeing our loved ones suffer and so, in the cases where the treatment fails, we hold a resentment against the treatments and doctors and medical industry as a whole. I find this perspective unfair at best and dangerous at its worst. It’s also a matter of relativity. We have no problems with treatments for other afflictions that are unpleasant, but manage through them without issue because we know they help. If an individual swallows something poisonous and the treatment is to immediately induce vomiting…that’s unpleasant, but the alternative is dying of the poison. Other treatments for non-fatal issues involve taking medication that cause nausea, blemishes, rashes, etc., which aren’t pleasant, but guess what…they work…and so we take them. We take the good with the bad.
Cancer is no joke, obviously, so it doesn’t surprise me that the treatment is also no joke. It can suck…horribly…but we’re dealing with CANCER. If the alternative is to do something that causes the patient no discomfort what so ever, I say go for it, but at this moment, that option remains elusive…and any attempt to do so will most likely end in death. So yeah, when it’s suggested that chemotherapy and radiation and surgery are somehow part of a conspiracy or worse than the disease or part of the problem, then I take great insult and have trouble viewing such perspectives as anything less than dangerous.
These treatments are what we have right now and we have few other scientifically verified options with as convincing success rates. They aren’t going to be pleasant, but they work. It’s also important to understand just how far we have come with these treatments. I would never want to go back 50, 25, or even 10 years ago to undergo the same surgery or take the same drugs available then. The side effects used to be so crushing that patients chose to die from the disease than make an attempt with the treatment. This speaks wonders to the medical and scientific communities that continue to find ways to be more effective in treatment and minimize side effects, giving patients a fighting chance.
Cancer treatment today feels horrible, but it works (sometimes…many times), and we need to be ok with that as the research community continues to find more effective treatments and less unpleasant treatments.
IDENTITY & PSEUDOSCIENCE
Cancer is confusing. We know this. There isn’t a doctor out there that will tell you we’ve got it figured out and everything will be ok within 10 years. The problem is, this confusion leaves people grasping and wanting, needing something to fill the space where they wish the answers would lie. But most of us aren’t doctors or research scientists and so we have little to rely on in order to fill that empty space where we wish the treatments and cures were, so we go to what gives us comfort to provide some semblance of answers. The problem is, that comfortable space is dictated by our identities, our sense of self…and not evidence.
I was no different in the past. When I didn’t have answers to life’s questions, I relied on my identity and the pre-fabricated answers to provide them for me. I wanted to believe being vegan and abstaining from drugs would solve all the world’s problems. I, unfortunately, learned otherwise. As I matured, however, I learned to accept that we just don’t know everything..as much as we’d like to. I learned that human curiosity is insatiable and when it can’t find answers to a questions, it will make them up. It comes much easier to explain away our confusion with fabricated answers than it does to simply state, “I don’t know.”…and be ok with that. This manner of explanation is used to explain anything from the origins of life to why bad things happen to good people.
I get it…but I don’t like it. When discussing cancer and it’s corresponding confusion, the need to explain everything is just as strong, and the explanations are often generated through identity, which is both problematic and, again, dangerous. We are dealing with physical processes of the body and we need to keep the focus on those complex processes and not simplistic, magic bullet answers.
I am vegan. I say that because what comes along with that term is the baggage of identity. Vegans, with a capital V, act a certain way, think a certain way, dress a certain way. It is an identity. I am not immune to the pulls of identity, but I’ve consistently tried to break from being A VEGAN and instead be someone who recognizes the injustice of our culture’s treatment towards animals and therefore lives vegan. I don’t eat them, wear them, or use them. Period. I am an individual who is vegan. Just as I am not a runner…I am a person who runs.
Living vegan, however, puts me in contact with many people who do accept the identity of being A VEGAN, and all the baggage that comes with it…the clothes, the interests, the various perspectives..and unfortunately, much of those perspectives are rooted not in science, but in psuedo-science or, what I like to call, “sounds good philosophy”. People tend to make decisions and inform their perspectives not on verifiable evidence, but on what supports their identities.
The vegan identity is one of skepticism, rightfully, and I appreciate that, but it can also go too far. When discussing cancer, the general skepticism towards dominant culture, corporations, and institutions as manipulative and authoritarian becomes seriously problematic when “the baby is thrown out with the bathwater”. Medical institutions, the doctors and nurses, and anyone connected to them are seen as the enemy, so the advice, treatments, and outcomes are all subject to this perception. Everything about hospitals and doctors and treatments becomes a part of this manipulative, evil dominant culture.
I disagree…and I’ll detail this a bit further when discussing the roles and intentions of my personal doctors.
Ultimately, and this applies to identity and not just the vegan identity (I used that as a personal example), there is a formula that develops when we create perceptions about cancer based on personal interests and not science.
First, there is a simple cure to cancer. It’s often either a diet, secret super food/chemical, or way of life, often “discovered” within some remote tribe or ancient people that no one can contact or study.
Second, the FDA is blocking its release. The FDA (an evil institution of dominant culture) is blocking the knowledge of this cure because they are in bed with an equally evil corporation and are protecting their economic interests.
Third, a pharmaceutical company is making a fortune off their drug that doesn’t work. Pharmaceutical companies do make a lot of money off their drugs, but that’s, in part, because they DO work. I won’t belabor this point further as it’s a long drawn out post on it’s own, but the premise that pharmaceutical companies can’t make money off a cancer-free populace is rife with contradictions.
I’ve been offered so many “cures” to my cancer by some well-meaning, but uninformed (and some crappy) people and the one constant that follows these cures is this formula. The “secret cure” is not rooted in anything that is verifiable by the scientific process and has never organically taken off in the cancer community because nothing offered has been able to blanket the complexity of cancer with a simplistic, magic bullet response.
The cancer patient has enough to deal with already and the last thing they need is someone driven by their identity to try and fabricate answers to the great confusion. People facing their mortality are in emotionally desperate circumstances and what they need most is support for THEIR desires, for what they need to feel best about the situation, not any action that is pseudoscientific, not anything that hasn’t been proven to work, not anything that makes the non-patient comfortable simply because the answer fits into their framework of identity.
Don’t get me wrong, I don’t mean to imply there is no worth in an individual experimenting with their treatment, but only if that experimentation is carried out by the individual’s interests and not influenced by exaggerated claims of a “secret cure”. The fact remains, we are confused about effectively responding to the complexity of cancer and so until we figure out how to completely manage the cancering process, alternative treatments should be part of the discussion.
After all, my doctor’s continue to say, “We don’t know what you’re doing, but something’s working…so keep doing it!” Again, the nature of cancer to be specific to itself and specific to the individual means there are many variables that may affect the process, both for the good and bad. This is why when one chemotherapy drug doesn’t work a new one is tried, or when one drug stops working another is added, and it’s why some drugs work in some people and not in others. Those drugs being used, however, have been PROVEN to work through verifiable means.
With that said, I have no problem with an individual adjusting their diet, trying alternatives, or doing anything that won’t interfere with the processes of the drugs they are given. And if they choose to not take chemotherapy or have surgery or go through radiation, and try a different approach, that’s THEIR decision to make. I might personally hang my head and wish them the best of luck, but it’s their decision to make. Without definitive answers that have become the “cures” to cancer, everything is up for grabs.
The problem arises when individuals or organizations profess to have the cure because they had PERSONAL success. There are two problems with this approach. 1. We’ve established that cancer is personalized and so treatments are personalized, therefore, we should always remain extremely reserved in telling other people what will work for THEM just because it worked for US. 2. Whatever alternative treatment a patient undergoes can never be stated as a cure unless that treatment is studied and verified to have been the direct cause in reversing the cancer. If an individual changes their diet and the cancering stops, in no way can we draw the conclusion that the diet is what caused the change. The complexity of variables will always negate the hopeful correlation.
In desperate circumstances, I’m all for the individual deciding they want to try anything to stay alive, but we simply can’t draw definitive correlations without verifiable evidence. It would be irresponsible, dangerous and downright immoral if I were to profess to others that living vegan and running 80 miles a week and drinking 5 cups of coffee a day and eating 3 jars of peanut butter a week and watching 2 hours of netflix a night is what will cure their cancer…but hey, that’s generally what I’m doing right now, so I can write a book, correct?
THE PROFIT MOTIVE
The “cancer industry” (as some like to derisively call it) is often criticized for having a “profit motive”. Well, we live in a capitalist economy. EVERYTHING has a profit motive. The veiled idea is that nothing about the cancer industry can be trusted because it’s not driven by empathic and compassionate people who care for the patients, but rather look at how they can maximize the money going into their wallets by keeping patients sick, by withholding effective treatments, by putting patients through horrendous surgeries because everyone involved will get more and more money.
This is quite an ugly picture to paint of doctors, surgeons, nurses, and medical staff who cancer patients deal with directly. Never once have I looked one of my doctor’s in the eye and saw them staring back with a narrowed gaze, calculating how much money they need from me to install a pool in their backyard. Let’s be real, oncologists are paid very well. None of them are wanting. None of them are struggling. They have an endless supply of new patients and enough money to retire now. They are doing this, in part, because it’s their passion.
And I’m saying this as a staunch anti-capitalist. Yes, “the profit motive” can be corrupting, but as a patient who had his life saved by a surgeon, cared for by nurses, diagnosed by specialists, scanned by expensive machinery, the blanketed blame on the “cancer industry” for ineffective treatments, unsuccessful outcomes, or unpleasant experiences is misguided, unfair and selfish. The “cancer industry” saved my life. The cancer industry allowed me to be here typing this.
What actually surprises me are the individuals stating that the cancer industry is nefarious and heartless, concerned only with making more and more money, are also the ones trying to sell books, advertising on their websites, diet programs, super foods, cures, etc. They are, in effect, working from that exact same profit motive, but under the guise of being “anti-establishment” and with the patient’s interests at heart. Unfortunately, the alternatives they offer are never rooted in legitimate science and only sere to add confusion to the whole experience and not valuable information or advice. They are simply trying to make a profit.
ONCOLOGISTS ARE NOT NUTRITIONISTS
My surgical oncologist saved my life. My medical oncologist followed a protocol based on law of averages in treating me. We are still determining at this point whether chemotherapy was necessary, but at the beginning of treatment, there was no reason to believe otherwise. I was not always happy with my oncologists, especially in my more darker emotional days, but I never believed they didn’t have my interests at heart. I never believed they weren’t concerned with saving my life. And most importantly, I never believed they were perfect and had the answers to everything.
We need to always keep in mind that our society is driven through specialization. We are afforded so much leisure time that we are enabled to discover an interest and, if we want, concentrate on it until we know anything and everything about it, at the expense of knowing more GENERALLY about lots of things.
Podiatrists know feet, but they can’t tell you much about Australian Rules Football. Farmers know the intricacies of crops and yield, but they can’t tell you much about Phrenology. And in these specialized fields are their own intricacies. Podiatrists know feet, but can they tell you a lot about efficient running gait? Farmers know soil composition, but can they tell you about predicting weather patterns? Maybe they both have some knowledge of the corresponding subjects, but that doesn’t mean they can be experts. They are expected to be specialists in their practice and little more.
And yet the skeptics of standard medical treatments want so much more from our doctors. They want them to be doctors, oncologists, therapists, psychologists, nutritionists, etc. Sure, doctors may know a bit about subjects related to the body, mind and health, but we should not expect every doctor to know everything about your health profile. I’ve found that I have to frequently defend the practices of my oncologists and nurses against alternative therapy types who express vile frustration at doctors for not giving them the outcome they hoped for. I’ve watched individuals rail against doctors for not advising them on nutrition. I’ve watched individuals discredit chemotherapy prescriptions because they didn’t also include the coupling of eating certain foods. Essentially, those that rail against the “cancer industry” expect oncologists to be everything from their doctor to their surgeon to their nutritionist, etc. This isn’t fair, nor is this what we should expect from our cancer specialists.
I never expected my oncologist to be anything more than my point person for cancer information and if they gave me any advice on nutrition, I listened, but followed the advice of actual nutritionists for that information. I wouldn’t take cancer advice from a nutritionist and vice versa, but there are those who discredit standard cancer treatments and try to vilify oncologists for not saving their life or the lives of their loved ones, by claiming they are inadequate, that they aren’t holistic. Of course, the preferred approach for these critics is going to a “holistic doctor”, which humorously (or not so humorously), has limited knowledge about and even less power to prescribe life-saving chemotherapy, but instead gives advice on lifestyle and nutrition, which is great, but is also seriously lacking when it comes to actually affecting cancer.
The cancer patient needs to be more pro-active in their role, studying the many approaches to handling treatments through diet, exercise, lifestyle, etc., and not expect an oncologist to be the end all for their personal treatment plan. And no one should be insulting doctors for not being successful in their treatments or trying to present them as money-hungry manipulators, uncaring about their patients, and a cog of the evil corporate cancer industry. It’s one thing to follow your own approach to cancer treatment, but it’s downright wrong to make people distrust oncologists and standard, PROVEN treatments for reasons of personal, individual frustration.
THE COMMON DENOMINATOR OF SUPPORT
The cancer experience is as complex as cancer itself. It is physically challenging, emotionally difficult, often depressing and desperate, and the information available can be overly simplified while at the same time excessive and dizzying. The massive void we wish to be filled with a better understanding of cancering and definitive treatments is instead filled with scientific experimentation, identity based absurdity, pseudoscience, exaggerated claims to secret cures, and a great deal of disappointment. It’s incredibly difficult to wade through and navigate this confusing array of advice and information, but there is one thing that ties together the cancer experience for every patient, and that is the need for support, sometimes emotional, sometimes physical, and sometimes financial.
To be told that the end of your life, which previously lay somewhere in the distance, now has a more definitive timeline is no small thing. Emotional decisions must be made and the individual has serious considerations to weigh in hopes they make the most important and meaningful decisions with the time they have left. Every cancer patient in this position needs the emotional support and confirmation of their decisions, whatever those may be, by the people they choose to include. They need, more than anything, to make decisions on their terms. And even if they make decisions that their loved ones disagree with, they need those decisions supported.
The cancer patient will also need physical support. The ravages of treatment can limit the most simple daily tasks such as turning on the lights, standing up in the morning, or cooking a good meal. The effects of surgeries and treatments can be short term or they can be permanent, but for some period the cancer patient will always need some manner of physical support. If you are in the position of being a caretaker, do not feel afraid to ask what you can do to ease the burden of just getting by.
And finally, the cancer patient will need financial support. As it stands in our country, medical expenses are insanely high. I won’t pretend to know how this all works, why they can be so expensive, whether the value is equal to the charges, or if something more fundamental needs to be changed, but I can attest to the need for financial support as patients go through treatment. We have programs in place that help cover certain costs, whether that is health insurance, Medicaid, food stamps, etc., but there are always significant gaps. The last thing a cancer patient wants to worry about is the burden of keeping their transportation, paying their mortgage or providing for their family while undergoing treatment, but these are very real concerns. Unfortunately, our society often only hears about the debate around health insurance and knows less about the worry patients have to manage when it comes to keeping the lights on and the fridge stocked. As a recipient of generous donations from friends prior to my first surgery, I can directly attest to how important these funds were to my well-being and how they eased my emotional burden, allowing me to navigate the difficulties of cancer without having to struggle in other ways.
This is why I’ve launched the Because We Can campaign, raising $50,000 for Family Reach as a way to directly help patients and their families take care of these other expenses so that they can concentrate on managing cancer first and foremost. In spite of all the confusion, fear, misinformation, lack of understanding, and limited treatments related to cancer, the one constant, the common denominator is the need to support the patient financially. I hope you’ll consider donating to my campaign and spreading the word to others.
I’m glad to have come to a decent understanding about cancer (through the efforts of researchers, scientists, authors, oncologists, etc.), to be able to navigate through the absurdity and misinformation, and to be able to continuously offer something that is a little more practical than I often discover, but I wish I didn’t. I wish I didn’t know about cancer. I wish two years ago I just kept on running and didn’t have my life turned upside down. But we don’t get to choose our circumstances…they just happen to us.
With that said, I’m glad to be alive in order to even develop cancer, and to be alive at a time when medical science has advanced far enough to have a deeper understanding of the cancering process, to be able to execute an incredible surgery that helped saved my life, to be able to receive chemotherapy without the level of side effects that would rather have me choose death, and to have a new timeline of life that doesn’t seem so finite anymore…so that I can help others to my absolute abilities.
Today I ran for an hour and twenty minutes through the woods on local trails, thinking deeply about the value of my life over the past two years, about all the wonderful experiences I’ve had, the generosity of friends and strangers alike, the appreciation to have met Laura and the opportunity to continue parenting my son, and the perspectives that give me grounding and comfort despite a reality that could be relentlessly depressing. Sometimes it’s hard to reconcile that we exist in a time of such incredible confusion and yet such great understanding, but I’m wordlessly grateful to be experiencing it all as we continue on that trail of grounding, of curiosity, of experimentation, and of ceaseless understanding. Someday I hope that brings us to the most effective management of cancer we can possibly obtain, with minimal suffering and maximal honesty.
Friends, let’s not be scared. Let’s be brave.
I briefly met Shaun Evans and his son Shamus after the Adirondacks Ragnar last year and was immediately struck by their story and abilities, which are detailed in the interview below. Shamus is currently pulling his dad through countless miles of training as they prepare to run across the country this summer, in part to raise money for Ainsely’s Angels and promote the value of inclusion. I have tremendous respect for the abilities and spirit of Shamus and Shaun and I hope you find the same inspiration and perspective I’ve gained from their efforts. Look for them on the roads this summer and consider contributing to the work of Ainsley’s Angels.
This summer you’ll be running across the country to promote the organization Ainsley’s Angels and the ideas of “inclusion”. I know your son has Cerebral Palsy and was the initiator of this run. Could you give me some background on Ainsley’s Angels, how you began working with them, and what your goals are for the run?
We were introduced to Ainsley’s Angels when Shamus outgrew his jogging stroller in 2013. I had undergone bilateral hip arthroscopic surgery in 2012 (as well as a sports hernia repair and vasectomy) so Shamus and I had not run together in a long time. When I put him in his old stroller it quickly became evident we could no longer safely run together with that device. However, we did not want to stop running together. He had been running with me his entire life.
I called Dick Hoyt (of Team Hoyt fame). Having been in several marathons with Dick, I knew that he had chairs large enough to accommodate his adult son. He picked up the phone and was happy to speak with me about options. He had said that the chairs he uses to push his son Rick are custom made and very expensive. He said another option would be to “contact this guy in Virginia Beach who goes by the name ‘Rooster'”. He explained that Rooster was the president of Ainsley’s Angels and he helped families to be able to obtain equipment so their children could more fully participate in life. I had never heard of such a group and was thrilled to hear that there were other people out there doing what Shamus and I were doing…rolling with the wind.
I e-mailed Rooster not knowing when I might hear back from him…hoping that I would not have to wait too long so that Shay and I could get rolling again. Less than 5 Minutes after sending the e-mail I had a response outlining a few options on how we could get Shamus a new chair. One of the options was to buy the chair for around $1000, another was to fundraise $800 for Ainsley’s Angels. Once the $800 goal was met, a new running chariot would be shipped to us.
Rooster helped to set up an online fundraising page for us. My wife, Nichole, and I launched the page Saturday morning as we got ready to take Shamus to his adaptive baseball league. In less than 6 hours family, friends and strangers had donated over $1300 for Shamus’ new wheels. A few days later we had Shamus’ chariot and were rolling again.
I then learned a lot more about Ainsley’s Angels and found that they are a rider athlete program that pairs able bodied runners with individuals with limitations that impair their ability to run on their own. I found that they had ambassadors across the USA and were focusing on a movement to promote inclusion and provide the gift of mobility by supplying equipment and some leg power to those who could use it. I knew that this was in line with everything Shamus and I had been doing for his entire life…. educating others about inclusion, and promoting his involvement and participation in anything he wanted to try.
When were you told Shamus had CP and did that change the trajectory of your life? Being told your child has a physical aberration like CP must be devastating as a parent. How did you absorb that information and translate it into the positive actions you are taking today?
When Shamus was born I was practicing exclusively pediatric Physical Therapy. I worked with countless children with neuromuscular impairments. Shamus was born full term and although Nichole had an extremely eventful pregnancy we were assured that his development had not been negatively affected. We were told everything was fine and that we had a health baby boy. Some of the events during Nichole’s pregnancy included placenta previa which resolved itself, an extreme outbreak of chicken pox shortly after we had made a trip to NYC for the 2005 NYC marathon, and a car accident at 35 weeks gestation in which Nichole’s car was totaled when she was t-boned by a 17 year old girl who had just recently received her driver’s license. The car accident sent Nichole into premature labor for about 48 hours. Eventually medication stopped the contractions, an extensive ultrasound of mom and baby were performed and we were told all was fine.
On January 11, 2006 Shamus was born with normal APGAR scores and we brought him home from the hospital as scheduled. However, even in the hospital I started to notice a few things including Shamus having an extreme startle reflex and fisted hands. I knew that kids often out grow these kind of “neurological symptoms” so I kept quite as to not worry anyone. As Shay developed and grew over the next couple of months I knew that he had some neurological impairments. The fisted hands persisted, his startle reflex remained, and I noticed that he had ankle clonus (a reflexive “tremor/spasticity” when the ankle is stretched). I mentioned all of these things to his pediatrician and was told at every visit that he would outgrow it and that I simply “knew too much and was paranoid”.
As Shamus continued to grow it became evident that he was not meeting his motor milestone (sitting, crawling, rolling, etc). However I continued to work with him and we noticed how bright and alert and curious he was. It did not appear that his thought process or mind was in any way impaired. Finally, when Shamus was 11 months old and not able to sit or crawl I convinced the doctor to order an early intervention evaluation and subsequent appointment with a pediatric neurologist. I was not surprised when Shamus was given the diagnosis of spastic diplegic cerebral palsy (affecting his legs). I was almost relieved that I had been right and that it was not some other unknown. I had worked with lots of kids with CP and although I never envisioned my own child with the diagnosis ( I don’t think anyone ever pictures their child having any type of limitations when they are in utero or new borns), I knew kind of what to expect. Shamus was our first child so we gave him all of the love and attention that new parents would give to their first child.
Nichole is certified in special education so kids with special needs were not foreign to either of us. Without ever really talking about it we decided that no mater what, whatever Shamus wanted to do in life we would try to make it happen. We knew that we would have to make accommodations/modifications at times but we wanted him to experience life to its fullest. When he was old enough to sit in his jogging stroller I put him in and off we went for a solid 20 miles. We continued that on a regular basis, and when his brother Simon was born 20 months later (with no physical limitations), we bought a double jogging stroller.
By the time 2013 came around not only had we put thousands of miles on our jogging strollers but despite using a wheelchair as his primary means of mobility, Shamus had ridden horses, bowled, fished, golfed, downhill skied, wrestled, learned to read music and played piano at his preschool graduation, played baseball, soccer, and gone to overnight summer camp where he completed a high ropes course complete with zipline. By then Shamus had done more than anyone ever thought possible and participated in things I had never done (like downhill skiing and I had only been on a horse a couple of times…Shamus was doing both of those things on a weekly basis in each of their respective seasons).
It doesn’t seem like Shamus gives anyone the opportunity to discredit him due to his mobility impairment, but what sort of obstacles does he face (if any) at his young age or what might he face as he gets older? How are you planning to manage such obstacles?
Shamus faces countless obstacles on a daily basis. He attends a public school and we have semi annual meeting with the district to address his needs. There are several things we have been advocating for several years. Sometimes we are able to facilitate a change, sometimes we have not but We are persistent. It is difficult because Shamus attends a small rural school and is one of very few children to ever attend the school who requires a wheel chair.
We’ll start at the beginning of his day and look at obstacles. Due to significant spasticity and tightness in his legs, weakness in his trunk and inability to get himself into sitting or standing positions, he is unable to dress and bathe himself and requires assistance from my wife and I to complete those tasks. We then transfer him to his wheelchair for the day and the bus picks him up in our driveway. The bus is equipped with an elevator lift. He then gets to school and has to have someone walk with him to the front door of the school because he is unable to propel himself over the deteriorating concrete and lack of curb cuts and the front door is not equipped with a handicap access button. He is unable to pull open the heavy doors from his wheelchair.
In addition we have been working to have modifications to Shamus’ chair so he can better manually propel it independently, however, insurance makes such modifications extremely difficult as they are not covered unless precise justification can be provided. We are not in a financial position to get Shamus all of the equipment he needs without insurance.
Once in the school Shamus shares a class room aide with some of his class mates (his classmates have the aide for behavioral issues while Shamus only requires physical assistance with mobility). He requires assistance with transitions throughout the classroom, to the bathroom, and from one piece of equipment to another (standing frame – to maintain weight bearing through his legs, walker – for short distances to facilitate strengthening and motor planning, ball chair- to work on balance, wheelchair- for longer distance mobility, trip trap chair- for lunch time). He then has PT and OT sessions during the day. He is expected to complete all of the class work of other students (which we want but realize it is extremely exhausting for him).
In the past he had been meeting with a school social worker as well to discuss feeling about having a disability and how he copes. However, we felt the social worker wasn’t prepared to work with someone like Shamus…a child who is advanced cognitively but has some significant physical limitations, a child who can communicate verbally and completely understands what is going around him. We opted out of social work and try to keep him involved in activities to develop peer friendships. Recess has been difficult for Shamus. We have been asking for a platform swing so that he can swing at recess. After 4 years of petitioning the school, and with Shamus now in 3rd grade, the swing finally arrived this spring. It has not yet been put up for him to swing in. We send in toys for him to play with other children (Velcro mits, balls, etc) but most kids want to be running around at recess. Often he will read a book or end up playing with a playground aide.
Beyond the physical obstacles he encounters each day I am sure their are emotional obstacles he encounters but he rarely shares them with us, although we always allow both of our children to talk about their days with us as we eat dinner as a family. Every day the recounts of Shamus’s day are glowing reviews of the fun he had at school…always with a smile on his face. I can’t fathom some of the obstacles he encounters every single day…every minute of everyday, relying on assistance for the simplest daily tasks. Yet it is all he has ever known, maybe that is why he is always smiling (though he sees his brother and classmates are able to do things for themselves), and I know he wants to do things for himself…he is simply patient, persistent and forever positive…I want those traits to last, and I try to learn from him every day.
Shamus seems to really guide your actions with the runs and training. Have you been able to keep up to his coaching demands?
Shamus is the best (and only) coach I have ever had in my adult life. Prior to Shamus guiding my training I had been my own coach basing my training on experience and LOTS of reading. Shamus simply based his training for me on what he thought I was capable of. He knew that I could run 20 miles, so why not be able to do it every day. I simplified my thought process and obliged Shamus in each of his requests as much as my body would allow. To my amazement my body was capable of things I had not thought possible.
Shamus was never told something was impossible so he simply believed. His belief in me was enough to propel me to back to back to back to back to back training weeks in excess of 200 miles with no ill effect on my body. In 2014, thanks to Shamus’ simple training mantra “Run far…if you don’t have time to run far, run FAST”, I won multiple ultramarathons and Shamus and I have won ultramarathons TOGETHER. That’s right, at the age of 7, Shamus became an ultramarathon CHAMPION, AND he had to pull me along behind him!
The dream to run across America was his and without him it would not be possible. He supplies the inspiration, the motivation, and the never ending positive attitude and infectious smile…all I have to do is supply the legs, and with him leading the charge, that’s easy!
This idea to run across the country…what do you think put the idea in Shamus’s head? How is this run going to be conducted and how have you been training for such an endeavor?
Shamus came up with the idea to run across the USA after he had seen a boy “cartwheel across America” on the Disney channel (photos of the boy cartwheeling in different states and with various landmarks across the USA were put into a slideshow during a segment between cartoons). Shamus and I then ran an ultramarathon together (my first ultra and only our 2nd race together). He asked if he could run it with me and since it was a closed course, timed event (6 hour race on a .356 mile loop around a park), I obliged figuring he could run a few laps with me and would then get bored. I figured he could then cheer me on and be race support with my wife. I cleared it all with the race director and we were off and running. I checked in with him periodically during the race and he wanted to keep running. After about 4.5 hours we were still cruising together and my wife made him take a bathroom and lunch break. While he took the break, he insisted I keep running and I obliged. 20 minutes later he was back running with me and at the conclusion of 6 hours we ran over 45 miles which was enough to win the race!
When we got in the car and headed home he asked “How far could we go if we ran that far EVERY day for school vacation?” He had just finished 1st grade so Nichole and I helped him with the calculations and determined we could run over 3000 miles. His next questions was “how far could we go if we ran 3000 miles?” We told him that we could all the way from one side of the country to the other. He liked the sound of that, and that became his mission, to run across the USA just like the little boy that “cartwheeled across America”.
Although Nichole and I thought he would forget about this dream, Shamus (per his personality) persisted with the idea asking us about it on a daily basis. Around Thanksgiving of 2013, 3-4 months after our race he was still asking “when are we going to run across America?” and that night he said “Dad when we run across the USA let’s give chairs to other kids like me so they can feel what it is like to run”. At that point we put the plan into motion.
With Shamus wanting to pay it forward I met with my boss and asked for the summer of 2015 off from work. Having met Shamus on several occasions she was extremely supportive. Now for nearly 2 years Ainsley’s Angels Power to Push has been our family’s focus. We have been fundraising, spreading the mission of inclusion and training hard in preparation for our epic journey. Training has consisted of building up tolerance to LOTS of miles. This summer I will be running nearly 350 miles per week (many of those miles with Shamus) so I have built up to running a minimum of 20 miles per day and running miles with Shamus whenever weather and his schedule permits.
This summer Nichole and Simon will act as support crew with an RV loaded with our daily needs. They will be our mobile aide station. In addition they will be towing a trailer loaded with the chairs that we will be donating along the way. In each state we will present a chair to a family that Ainsley’s Angels is helping us to find. We hope to find individuals to support us along the way with some of the day to day needs and errands and will have immediate family as well as Ainsley’s Angels family meeting us along the way.
I know adversity can really change one’s perspective or offer life learning experiences. What would you say has been your greatest perspective shift as Shamus’s dad?
With Shamus having to overcome physical limitations I think I have truly found the power of belief in one’s self, and the strength that can be gained by simply staying positive when everything else in the world seems to be saying “Why bother”. Shamus has shown me the importance of smiling, pushing forward, never giving up, believing, dream BIG, and knowing that anything is possible.
If you had a global audience, what would be the most crucial aspects of living with mobility impairment and inclusion you would want to convey?
The most important aspect of inclusion we are trying to convey through our mission and journey is that there is no reason individuals with limitations of any type need to sit on the sidelines and watch. They can be fully involved in whatever they want to attempt. Modifications, equipment, and accommodations can be made and there are lots of people willing to help, individuals simply need to know that programs like AInsley’s Angels (and many others) exist. While we spread the vision of inclusion we will actually be providing the gift of mobility by donating equipment to make participation an option.
How can those of us not directly affected by mobility impairment support others managing and thriving through their struggles?
To get involved you can financially support programs like Ainsley’s Angels or get directly involved by applying to be an ambassador. The power to push project has been developed as national outreach. We are always seeking local, and state ambassadors for Ainsley’s Angels to promote involvement and inclusion in their areas. Selected ambassadors receive start up kits including 3 running chairs and lots of AInsley’s angels gear in order to get local children involved in fun runs, road races, bike rides, triathlons, etc. Find out more by visiting the website at www.ainsleysangels.org and click on “Be an Angel”.
What are your hopes for Shamus’s future? And are you scared that when you finish this run, he’s going to set an even bigger physical goal for the two of you?!
I know that Shamus is just beginning to encounter obstacles in his life. For the most part Nichole and I, another family member, or a school aide is always there for him if he needs anything. My goal is for Shamus to live as independently as possible as an adult. However, I try not to focus on the future too much. There are often gains in the medical field and there may be developments that are life altering for individuals with cerebral palsy. For now, we try to take on each obstacle as it presents itself. IT is actually a good metaphor for the way we will tackle our transcontinental run this summer. I don’t want to get overwhelmed by thinking of running 3200+ miles or even 50 miles each day. We will take one mile, one step at a time and work through difficulties as they arise. With Shamus leading the way I know we will succeed. As far as what is next, Shamus is already talking about competing in an Iron Man and then “running around the world” :) Dream Big! ANYTHING is possible :)