Monthly Archives: January 2016

Hold The Door Open.

I’m not the type of person that wants to make friends through cancer. I didn’t feel compelled to bond with others in the experience, join support groups, or fly the flag. For reasons I’ve touched on more throughly in other posts, I just didn’t want the identity of cancer. I felt no compulsion to fly a flag handed to me instead of one I picked up. I’m just not the type of person who wants to make friends through cancer, in part because I sure as hell don’t want to lose friends to cancer all the same. Sentiment is nice, if hardly practical, so when I made friends with Denver Hutt, it had nothing to do with shrugging my shoulders against the circumstance and just saying, “Oh well, I guess I’ll tolerate this fellow patient.”

I had met Denver completely outside of cancer in both our lives. My employment situation had taken a sudden turn for the worse and as I scrambled to find work while my savings disappeared to child support payments, we were connected by the small town in a big city dynamic that is Indianapolis. The Executive Director of The Speakeasy and by some unknown social media connection, emails were exchanged and she promised to put out requests into her network. Then just a few days later our paths crossed at a coffee shop where I often worked in the morning and which sat across the street from her house. Quick, casual and official introductions were made, but we went about our ways, mine leading into my diagnosis just a few weeks later.

I took a photo of the chemotherapy clinic I would get to know with too much familiarity, posted it on social media to a growing list of friends deeply concerned about my well being, when a text suddenly came through.

“Psssst…I’m next door.”

My mind instantly went to worst case scenarios as it tends to do. She has cancer? Has she had it? Did she just get it?

I pressed her with questions and she explained they weren’t sure what was going on, but it might be pneumonia, a case so bad she had cracked multiple ribs in more strenuous coughing fits. They were running more tests and although they didn’t know what was going on, that is hardly a sign of encouragement in these sorts of situations. She asked for privacy with the information and I agreed, because just like that were friends that can only be formed in very certain terms of crisis and desperation.

The tests, of course, ultimately shows cancer as the culprit, but right off the bat her situation was unique and rife with problems. The dynamics of her case were so complex and varied that she was pointed directly to the head oncologists in their respective fields. She was the anomaly of anomalies. But I feared that wasn’t the hopeful kind of anomaly to be. Denver would have disagreed, vehemently, to my face, as she sometimes did. I liked her fire even though I got burned a couple times.

We made time to catch up on our health situations (me pausing design work and Denver getting discussion in between the rapid fire meetings she was always hosting at the coffee shops where I would work) as our non-cancer lives rarely intersected. She visited me in the hospital after my first surgery, bringing a box of Operation game brand band-aids, which sits in my “cancer box” with everything else. We continued to meet on schedule if time passed too long without a chance encounter, and our friendship expanded into territories most rarely get.

I realize now that although I’m not the type of person who wants to make friends through cancer, it’s because even people who have cancer can hardly relate. There is an obvious age discrepancy between a relative baby such as myself, in the cancer community, and the rest of the cancer demographic. I’m 39, but I’m treated like I’m 14. A different sort of pity and “what happened” comprises the tone in all the questioning. Denver was only 28 when she died.

A large part of our friendship solidified not because we had cancer, but because we now had to make serious choices in our lives afforded only to the young, and we essentially needed to make them immediately. I was relieved to hear her mirror my thoughts in our conversations, to know that the private issues I was considering were more universal than personal, but to us, they were also tainted with the very real threat of abbreviated mortality. We couldn’t talk about love in the same way others our age do. Our considerations of kids could only carry much more significant risk and reward. Our maneuvering for employment and stability, against the threatened need to live all out, felt almost sinister.

And somehow, I was the more fortunate one in our circumstance. Despite our impossibly unique connection and similarities, the 10 years I experienced beyond hers helped answer some questions more definitively. At the very least, I created an amazing child and will not miss out on a significant portion of that experience, come what may.

Denver had a greater fire in her than me. She was more blunt than I had ever experienced before, and I get the feeling this was not dictated by the immediacy of cancer. I respected that, and although my care for one of her abrupt health changes had me choosing words unwisely, which afforded me something of a period of shunning, I took it as a sign of our genuine friendship.

More than all the discussions we shared, the questions we bounced back and forth, the life considerations we tried to hash out together, the greatest part of our friendship was the comfort I had in knowing that I wasn’t going this alone. I know I’ll be ok to go it alone. And I know I have so many in my life who are making sure I don’t go it alone, but there was something different about the friendship I had with Denver, that it wasn’t just the unique perspective our relative youth afforded us in this crisis, but the comfort I had knowing that when things got sad, when the motivation waned, when the fire died down, that she had experienced the same and if needed, I could always call to meet up at a coffee shop, which although consistently ended in tears for her, I knew was important. I knew it was some way of us saying, I’m still here too.

Laura walked over to my bedside in the ICU and said through choked words, “Is it ok to give you bad news in the hospital?”, her way of saying that something was terribly wrong and I needed to know, no matter how unideal the situation might be.

“Denver died last night.”

Maybe I was fortunate to be emotionally clouded by so many drugs, distracted by having to manage my own pain, or even hearing a bit about “the writing on the wall” from a friend and even Denver herself just a week prior. I didn’t have much of a reaction. I figured this day would come. I gathered some more of the specifics and let the information pass through me, filing it for consideration later.

I didn’t really know what was to come of her passing. She was pretty adamant that wasn’t going to happen, and I wasn’t about to discount her drive to make it so. I guess she wore off on me in that way, in that was the one worst-case scenario my mind didn’t jump to. “What would it be like without Denver going through this too?”

It’s lonely.

That’s all I can say. I won’t have an impossibly organic connection to someone like her again and the opportunities to hear my life and death considerations reverberate back to me from her own consciousness is gone. That comforting, shared moment has come and gone and in a way, I face this with one less person to consider the experience.

It’s going to be lonely without Denver around, knowing our chance coffee shop encounters are of the past, but as with all our friends who have had their lightswitch of consciousness abruptly flipped, we know it’s the remembrance of their spirit with which we continue forward, and the last thing Denver would ever accept from any of us is dejected resignation. She would demand we do something good and probably unreservedly scold us to our faces if we didn’t comply.

She ended her last blog post with the most simple and practical of advice that is only right to share again. I get the feeling she had the sense this might be her final parting post, which makes the advice that much more pertinent.

“I will ask that you smile at strangers more this week. Be kind simply because you are a kind person. Judge a little less. Hold the door open.”

I know first hand she practiced what she preached, in part because she was on the receiving end of some pretty selfish cruelty when her coughing fits were met with uncaring hostility from a public with no idea what she was experiencing. I loved her idea to create a button to wear that said, “Don’t worry, it’s not contagious, it’s cancer,” but I also know she was not one to pick up the identity flag either. She wanted to be acknowledged only for her acts as an individual, and so for all those that knew her, do consider being kind, judging a little less, and for goodness sake…HOLD THE DOOR OPEN!

It’s gonna be lonely without you Denver.

This is the New Year

I stopped marking New Year’s Day as a life reset, an arbitrary time line to think back on the past year and make plans for the future. As a person who seems to always be scheming and planning for the future, while looking to the past for mistakes and successes, I never felt the drive to make resolutions or put any degree of importance in planning my life in a haphazard last second fashion dictated by cultural pressure to do so. The experiences and lessons of my life are on a continuous timeline, a trajectory that is rarely broken by moments that demand resets or slates wiped clean.

But I had never felt the, quite literal, physical reset that takes place during my treatment surgeries. I had never had my slate wiped so clean it was as if it had never been written on in the first place. These surgeries have now come in such succession with a similar erasing effect to my life, that it actually does feel like a reset, and it gives me that odd perspective of putting all the time between them in perspective, to think back on and take perspective from, to look ahead and figure out how I’m going to write on the slate from day one. In effect, these surgeries have become my New Year’s Day.

Tonight, then, is something of my personal New Year’s Eve, as I admit myself into the hospital at 7am tomorrow morning to begin pre-surgery preparations that will officially begin Tuesday morning. And when that process is all said and done, I’ll wake up into that nightmarish world of Morphine, disorientation, a body destroyed and weakening, pain and misery…and start into something of a new life again. Literally, I’ll be starting over.

But first, I have almost a year and a half to reflect upon, which I’ve been trying to do these past few days, surprised at just how much has happened in this latest time between surgeries. So much has happened, and so significantly, that my perception of the past year has become muddied, and I regret almost forgetting or not appreciating each experience as it unfolded into the next.

There was finding myself on the cover of Runner’s World just a month after my last operation. There was the Cape Cod Ragnar with my teammates on Strong Hearts Vegan Power. There was the Ultra Benefit Run for Family Reach. There was my training towards a competitive half that hit my goal of going 1:20. There was the sudden pacing role to 3:05 in the Monumental Marathon. And those are just a small handful of the running accomplishments I managed to build during this period. This doesn’t count all the friendships created, the charity money raised, the adventures I’ve had with Laura, the exponentially growing relationship with my son, and the many projects I’ve fostered and begun leading into this next pseudo-new year. To dwell on each would take more time that I have to devote and probably lead to a continuous memory stream I’ve inadvertently suppressed. Suffice to say, I’m thoroughly satisfied with what I’ve made with my time this past year and a half.

The continuous thread of these experiences, however, is running. And of everything I’ve devoted my efforts to this past year, getting stronger from surgery and measuring that progression through my running fitness has been my proudest accomplishment. It’s worth detailing to me.

I explicitly remember the first time Laura and I went to our local trail system after surgery, so she could continue her training towards the Monumental Half Marathon and I could spend some needed time in the woods, if only  just walking the trails. Of course, I ended up testing my body against the terrain and completed a tenuous jog / walk effort that felt so wonderful and left me wanting more.

From there I gently increased efforts when I felt the ability to do so, sometimes setting the incline high on the treadmill and walking until my lungs threatened to give out. It was as encouraging as it was embarrassing, but I knew it was a necessity to build myself back up.

Until finally I found my way back outdoors, when the weather had turned towards winter, and I could attempt incredibly slow and weakened runs around a 3 mile loop of our downtown canal. Each day I started with a weakness in my body that felt like I had just completed a 20 mile hard effort, but I was just beginning. I struggled to lift my legs and my torso hung over my abdomen in a slump. I shuffled through a 9:30 to 10:00 minute pace, while still feeling my heart rate push itself into rapid beating that demanded I start walking to calm back down. I could complete 3 miles with a handful of relatively demoralizing walk breaks interspersed, almost as inadvertent intervals.

Over the next month though, I continued the consistency and slowly, very slowly, I could complete the 3 miles without walking, then extended the distance to 5 miles. Even then, I approached 6 miles as if it was a new long run distance, unsure I could complete the distance without sitting down to recover my ability to keep going back to the car. With measured patience though, I pushed at the distance and week after week I could look back and see progression. I could see my strength coming back, my form becoming taller, my paces dropping. 9:30 became 9:00 became 8:00. I was getting somewhere, no matter how relatively frustrating compared to my past.

That’s when I started actually training again, looking for that moment when I could firmly say I had “Flipped the switch” and my body was cooperating with my ambitions. I pushed harder and harder, felt my body getting stronger, touched on moments that felt like my past self, and entered into the Spring as a compromised, but legitimate runner.

That’s when I let loose. Mileage crept back into my base of 10 miles a day, leading into the expected routine of speed workouts and long runs, and I knew I had found the runner I had been since before diagnosis. I knew I was strong and capable again, even if it was all going to come to an end again. But it wasn’t the time to dwell on that reality yet.

That began my ambitions towards the ultra run, that although didn’t go so well, went pretty damn amazing considering. Then came the Runner’s World Half where I hit my 1:20 goal and felt that distinct race environment that feels so much a part of my being. And finally, I found myself leading a handful of runners to Boston Qualifiers in the Monumental Marathon, pulling them into a 3:05 marathon.

As I ran towards this surgery and the opportunities to push my progressions ticked away with each day that neared, I knew I had to just focus on staying strong for the reset that was to come. Of course, there is that part of me that so much wants to see how far I can keep taking this progression, how much faster I can get, how many more new running frontiers I can find…but that’s not my reality. My reality is making the most of each period of time I have between surgeries, and I’m more than satisfied with what I built during this one.

It was amazing to feel my body go from a limp noodle to a strong, swift mechanism capable of finding it’s way into 6:45 / mile 10 milers at conversation pace, to feeling the fear and adrenaline that marks competitive racing, to experience that race distance degeneration when you’ve held your abilities all the way to the finish line with nothing left to spare, to simply finding the ability to lay into a run when you feel the energy demands it.

I know some people might still harbor that suggestive reservation for me, thinking that maybe I should take it easy, or at least back off during these times between surgery. I mean, cancer and the ravages of the operation are enough to endure, right? So why add more adversity and obstacles. I get it, but I don’t agree. I can’t do anything about surgery or cancer. Those are battles to fight for other people, my surgeons and oncologists. I just have to endure those. My battles are what come after, and the only way I know how to fight those battles and make the most of my situation is to run them out, to take the effects of surgery and reverse them to my benefit.

I never lose sight of what is about to happen, and there is a part of each run that knows what is to come and is carried out with the intent to build against the ravages just a little bit more. Because, honestly, tomorrow is when my new year starts, when my body is erased, and this is what is to come.

My muscles will atrophy as I lay in bed for weeks. I’m unable to eat appropriate foods and nutrition not supplied by an IV drip, so I slowly waste away before I can take control of my diet again. My abdominal muscles are literally cut in half and it’s unreal they manage to fuse themselves back together. The chemotherapy destroys every cell, good and bad, throughout my body. The processes of my organs must adjust and readapt as they are shut down, or completely removed, necessitating all kinds of unpleasantness. And there are the ravages of the medicines and treatments themselves. My tastebuds become hypersensitive and the only palatable foods are bland and tasteless. My eyesight periodically goes blurry and doubles over on itself for over a week. The morphine creates hallucinations and draws me into a world that flips between only nightmares while I sleep into a reality that isn’t much different then back again, over and over until I’ve lost sense of time and space. My sleep patterns completely flip so I’m up all night and sleep during the day until they slowly readjust. The pain pills only work for so long and I count down the minutes until I can take another, seeking just enough relief to not become addicted. Sitting up from a lying position in the morning to just walk 10 feet for yogurt and then back is a significant effort that leaves me motionless for most of the morning. And..

Well…on and on.

I’m a shell of my former self…but then there is running. There is something to get back to. There is the knowledge of progression, of stressing the body, of understanding and FEELING strength develop. There are markers through pacing and distance that are undeniable measures of progress. But it’s not just about that reversal of what surgery has done to me, but actually enjoying the experience of using my body and being in the world in a way I can relate, in a way I understand, in a way that defines my existence and happiness. The only difference with running post-diagnosis and pre-diagnosis is the added benefit to overcoming surgery. In the end, I still do it (against some people’s wishes) because I deeply enjoy it.

This is why the majority of the experiences that defined this last period between surgeries consisted primarily of running. There is little else to say about that.

I can only say my New Year starts the moment I wake up from surgery, in a state that is hard to imagine being worse than it is. The benefit, of course, is that it can only get better. I’ll be destroyed, undoubtedly, but I also know, and proved this last year and a half, that we can get strong again. If I have any resolution for this New Year…it’s that.

See you on the roads and trails next Spring.

No Words. Only Actions.

This post will probably fail in every way, because I’m struggling to find the right words to express the gratitude I hold for my family of friends, who came through in the best, most necessary, most unexpected way this morning.

I dropped Laura off at work – right after I was lamenting about the continued financial difficulty I’m navigating in the face of cancer treatments, not making rent each month and having to swallow my pride and borrow money from her, harboring the embarrassment and frustration of not being able to provide for my son’s needs, or even contribute to something as simple as going to the movies or buying dinner – and as she was getting out of the car she barely veiled her mischevious excitement through a stifled smile when she quickly blurted out,

“Check your email between 9 and 10 today!”

Completely unsure what that meant, I went about my morning as usual, knocking out a 10 mile run, shoving breakfast in my mouth on the way to the coffee shop, then setting up and getting to work in an attempt to tie up all loose ends before surgery renders me useless on Tuesday.

Then all of a sudden an email notification popped up, something about Paypal.

I opened it to see a donation made directly to me, an amount of which immediately lifted an emotional weight that has been so pressing, so relentless, so frightening, that it felt physical. I stared at the donation amount for a bit, trying to process what this meant for all my current financial worries and then after experiencing this incredible weight lifting from my shoulders, I felt…embarrassed, humbled, inadequate, and worried.

But in the best way possible.

I felt all these emotions, because I have been quietly struggling through unavoidable financial restrictions for many months now, of which countless cancer patients must experience, because no matter how physically well we may be doing, the financial burden and restrictions to work (whether to stay eligible for aid or other reasons) are crippling. I’ve heard stories where upper middle class families turned into welfare recipients over night. I’ve heard stories of individuals denied treatment at the check-in counter when payments couldn’t be processed. I’ve heard so many difficult stories of previous security and comfort wiped away in the face of cancer’s financial burdens. And although I’ve been staying on top of my burdens, they have periodically slipped again and again as I wait for each surgery to allow me to work without restriction as I have in the past.

But I don’t mean to dwell on a “woe is me” story.

I just want to convey how incredibly important this donation is to my emotional stability right now, and all those feelings I expressed above, the embarrassment, humility, and worry, are not an extension of ingratitude, but rather a different kind of concern, of being unable to reciprocate this unbelievable gesture. I know I won’t be able to convey how appreciative I am that these individuals came together and compromised their own financial state to support mine. I do NOT take that lightly.

To give credit where credit is due, two good friends of mine from the Strong Hearts Vegan Power running team, of which I am a part, facilitated this benefit on my behalf without my knowledge. They put out a call to the team and solicited donations to help support me as an individual, and I continue to be without words for this effort.

For those that don’t know our story, the SHVP team formed around a Ragnar Relay a couple years ago, during which we realized we had developed an incredible community and tool of vegan advocacy. From there the community of friends grew and grew and…well…continues to grow. Our team, turned community, turned solid family of friends now probably numbers 50+. Through these friendships we have supported our individual endeavors outside the team and I’ve been both floored by the generosity shown to others and inspired to become a more generous and empathetic person myself, through the example of their efforts as a team and individuals. Without reservation I can say I’ve never been part of a better group of individuals than SHVP.

But I expect nothing from them aside from reciprocated friendship and amusing Facebook banter. So as this donation now rests in my hands, I have the responsibility to use it as effectively as possible to manage my life while this next cancer treatment renders me relatively useless, but, even more so, to also continue this manner of reciprocation back to them and to others to my complete ability. This is the best burden I can ever imagine shouldering.

I want so say to them, again and again (and am doing so here), that I am so inexpressibly grateful for this donation, that you all are amazing individuals and as a team we’re like an actual Voltron of veganism, destroying stereotypes, exploitation, and apathy wherever we may find them. And when I despair of the world, and find little solace in any action I take, I can look to our example and know that whatever horridness the world continues to create, it’s not of our doing. This donation is a small example of the power we both contain and share.

And to reiterate, it would be an offense to simply express my gratitude to you all and leave it at that. This is both irresponsible and insulting to your action. What will only matter is that I use this donation as responsibly as possible and then reproduce this action to the best of my abilities going forward, so I’ll promise that to you now, that whatever personal compromise or sacrifice you made to support me, I’ll find a way to reciprocate.

I want you to know, all of you, what a donation like this does for me and does for others. While I’m unable to not only work, but to simply breathe on my own, I can’t create the funds that pay the mortgage, pay the utilities, buy food, etc. These aren’t the extravagances and excesses of our lives, but the basic necessities of survival. Without these, what does one have? How does one survive? And financial support will allow me to cover all these for a few months, letting my body heal, adapting to the unforeseen physical complications of such an incredibly extensive surgery that destroys my body, robs me of any creative inspiration or even the drive to complete the most basic tasks. A donation like this allows me to focus on recovery, to find the time to build my body back up, to get stronger and stronger in order to work again, to be creatively inspired, to find my way out of dark emotional places and back to positivity. This donation will also allow me to retain some sense of dignity in providing for my son, who is currently in need of dental work, of which I have struggled to provide. This donation will allow me to help in that regard, and that benefit to my emotional state is immeasurable. This donation will also help me dig myself out of some unavoidable holes of debt I incurred this past year, setting me up for more stability past surgery.

Out of appropriate discretion, I will spare you of financial details, but suffice to say this donation is less about the number and more about the emotional comfort you have afforded me by helping me pay for both the necessities of living and the integrity and responsibility I try to maintain for my son. There are no expressions of gratitude worthy enough to reciprocate.

As I navigate these last few days before this third surgery, I’ll be thinking how best to reciprocate to you all in action, how to equalize your gesture in kind and towards others. For now, I can promise you that this enables me to more quickly become physically able, physically strong, and back to running with you in the future. And when that happens, I’ll express all this again face to face.

With fingers crossed, I’ll enter this surgery with the measured hope that when I wake up, I’ll be that much further away from more treatment and that much closer to the financial stability of self-reliant work, knowing that in the interim, you have taken care of me and my needs until then.

“Thank you” sounds like an insult to the gratitude I feel towards you.