Monthly Archives: July 2013

Casual Cancer

There is something shockingly casual about the process of chemotherapy.

“Good morning Scott”, the receptionist said as soon as I entered the office, as if she had been waiting on me all morning. The familiarity with which she said my name caught me off-guard, but I feigned the same level of familiarity and replied, “Good morning! How are you?”

Admittedly, this familiarity was a little disconcerting. If there is any place I don’t want to be recognized and my name thrown around so casually, it’s the waiting room of the oncology center.

“Scott”, the nurse routinely called out into the nearly packed waiting room air, all the patients noticeably older than myself.

I got up and walked to the back room where all the patients getting their infusions sat complacently, some balding or completely bald, some not. Divided only by chest high walls, the brightly lit rectangular room contained approximately 15 stalls adorned with nothing more than a comfortable lazy boy type chair, another chair for a companion and a “tree” to hold the medicines that will drip into our bodies for the next few hours. A couple plasma screen TV’s were mounted to the wall, the sound off, but the annoying over exuberance of game show expressions continuously pulling my attention away from the passive surroundings.

Donuts brought in by a patient sat on the nurse station counter top for everyone to share, which I thought was an amazingly kind gesture. Everyone spoke in tones so friendly they seemed to undermine the seriousness of the situation we were all experiencing. Frankly, everything was so pleasant…so casual…that I didn’t trust it. I was waiting for the ruse to show itself. Almost as if everyone was being so pleasant to lessen the blow of an incredibly harrowing experience that was about to begin, or as if we were all trying to deny the emotional weight of our individual realities.

I was unnerved. I was worried. I was somewhat afraid.

After my last treatment, at a different location, I had a horrendous post-chemo experience at my parents for the next three days, brought on entirely by the fact that I wasn’t given any nausea medication, which meant I spent the night violently vomiting in the toilet, then unable to eat or move for the following three days until I finally met with my oncologist who prescribed me the necessary medication. With that awful experience still in my memory, I was very very very apprehensive about this next infusion and what was to come.

The nurse, a familiar and friendly face from an earlier office meeting greeted me with a minor pin prick through my chemo port and a pull of blood for testing. She hooked up the tubing that would pull the meds into my system for the rest of the day and then sent me with some papers back into the waiting room to hang out before meeting with the oncologist.

A few minutes went by and they called me back again where we had a pretty basic discussion about my past experience, ran through my blood counts (“good”) and made sure I was not having any drawn out negative effects from the treatment (I wasn’t).

I was sent along with the nurse again who handed me some yellow papers, brought me back into the infusion room and gave me instructions in such a simplistic, but necessary, manner that I felt like I was being instructed on how to act at my first day of kindergarten.

“You’ll come in here, put your yellow papers into this slot, then find a chair to sit in and wait for us to come over and start your meds.”

I picked out one of the few remaining stalls left, strategically away from the bathroom and any high traffic area for minimal distractions, and got to waiting.

I was still nervous. Still concerned. But maybe a little less afraid now.

The whole experience was still far too casual for my liking. I don’t know what I was expecting or wanting, certainly not some morbid environment where the lights are dimmed and everyone walks around with their heads hung low, but also not this common routine that takes place all day every day, so frequently that for most people, nurses and patients alike, it’s just going through the motions. Everyone around me was older, which was to be expected, and in various states of degeneration or regeneration, but no one looked to be on their last leg so to speak. Yes, some were balding, looking more ravaged than others. Some walked across the room with a little less bounce, but nothing that the normal ravages of aging doesn’t already create. For the most part, everyone looked and acted quite healthy, as if we were here being infused with nothing more than gatorade instead of the poisons that actually filled the clear plastic bags that hung above.

This was just too common. It felt like this whole cancer thing is something we all just do now.

Soon enough my poisoning began. Because this was my first time at this facility the nurse began explaining in detail the types of drugs I was getting, their potential side effects and a whole slew of information she had memorized from performing this routine over and over again with countless other patients. And for the next 4, 5, 6 hours (I don’t know, I stopped paying attention) the fluids dripped into my body and began attacking the cancer cells and, unfortunately, the healthy ones too. I kept busy reading, checking social media, and absorbing the casual atmosphere that surrounded me.

Patients came in and had to head right back out into the waiting room as the stalls had become filled to capacity. An old man walked in cracking jokes with the nurses he now knew by their first name. Patients completing their last infusion were offered jewelry as a parting gift. Another man answered a call on his phone in the stall next to me,

“Oh yeah, things are good. I’m just sitting here. Yeah, actually I’m getting an infusion as we speak”, he flippantly explained to the person on the other line.

And all this went on, as if it was our jobs. Just clocking in and clocking out.

My last bag drained into my body and without so much as having to check in for another appointment I was unclipped and sent on my way, out the door and back to my parents for a few days of relaxing and letting the worst of the chemo effects subside, fortunately nothing like the time before, the vomiting never showing itself and the nausea kept at bay.

2 down. 10 to go.

And I’m STILL not comfortable with how routine this all is. But at least I’m not concerned anymore. Or scared. I’m actually falling in line with it all, bringing oatmeal cookies in for my 3rd treatment, knowing where to put my yellow papers and getting on with the business of poisoning in stride, maybe even cracking a few jokes of my own. But despite my discomfort with how casual and easy this whole process is, there is still the unavoidable seriousness of everything going on around me. Some of these patients won’t live to see their final treatment. Others will walk away cancer-free and undeniably changed from the whole experience. And, for me, I don’t know what is to come. It’s still too early and, should everything go well, the worst (a second extensive surgery) is yet to come, which might be the factor hiding in the shadows of my thoughts that keeps me so unnerved about this casual atmosphere. It feels almost wrong to enter chemotherapy (what’s so therapeutic about this anyways) so cheerfully knowing the outcome is both unwritten and, in my own situation, not the most pleasant regardless.

These are all internal considerations, however. On a daily basis, these nurses will go through the motions so many times they could do it in their sleep. Ultimately, their job beyond all that is to make something so dark and potentially depressing just….not so bad. They are here to make the process of poisoning seem nothing more than hooking a tube up to a bag, which is exactly what they do. Because no matter how serious this all may be, each one of us considering the weight of our own mortality, we must go through this process regardless, and there’s no reason to make it any worse than it already is.

As I type this, the poisons drip into my system. The TV flashes on the wall. Donuts and cookies line the nurses station countertop. Someone cracks a joke. And although all of us go through a process of degeneration or regeneration, silently wondering if we’re going to make it out alive, we are quite fortunate that in this very moment, at least, all is no more difficult than laying down to take a nap.

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The Past Tense

I don’t mince words when it comes to explaining cancer to my son.

In the middle of brushing our teeth one night he abruptly stopped and asked me, as a six year old spontaneously does,

“Daddy? What happens if you get cancer and don’t do anything about it?”

Without pause I began explaining the process of cancer growth, multiplying cells, and the potential consequences of not acting to kill them, where they begin to take over the body and ultimately lead to death. Of course, I immediately followed that up by reassuring him that this is why I have had a surgery, am going through chemotherapy and we’re doing everything we can to kill the cancer.

And that was that. He went back to brushing his teeth and beginning our bedtime ritual.

I love that my son isn’t naive to my cancer experience and feels confident asking me the questions that pop into his head, because it means he’s not scared of the process, because I talk to him about my cancer when it shows its ugly head throughout the day. I don’t necessarily concentrate on it, but if I’m tired from chemotherapy or my stomach is giving me problems or any other sporadic annoyance related to cancer gets in the way of our activities, I let him know. I let him know because this is an incredibly important experience that he will undoubtedly learn from, no matter the outcome, and come out the other side better for dealing with it and being aware of it. Just as I was fortunate to understand a little more about the cancer experience by watching my sister go through it, he will also be more prepared when this is all said and done.

But that’s the more hopeful perspective.

I also NEED him to know what is happening to me in case things DON’T go as planned. After all, cancer isn’t cancer because it’s a physical annoyance. It’s not cancer because the treatments are so rough. Cancer is the ugly monster it is because it is always potentially fatal….and should things not go as planned, my son needs to know what has been happening all along. If I should succumb to the disease, however that might happen, I want my son to have the awareness that this was always a potential. I don’t want him to get caught off-guard, unaware that death was a potential part of this process, so I explain it to him bluntly. We talk about it so that he can process it in his six year old way, just as I have been forced to with my adult level of awareness. Plus, I trust him to understand what’s going on and cope with the seriousness of the situation. He’s an amazingly empathetic little creature.

On the other hand…I’M struggling to cope with the potential fatal outcome of my cancer..not the finality of it all, but the potential absence in my son’s life it would create. I can handle the emotional weight of existence having no definitive purpose, of the unknowable causes that brought me to this point, the perceived “unfairness” of the situation…but all this leading to being absent in my son’s life, well, I just don’t know what to do about this, how to process this, how to prepare should it become a greater reality down the line.

First off, let me interject here to say, I’m not proceeding as if I WON’T be here for my son. I often feel great and am moving forward as if this is just an incredibly annoying physical obstacle in my life that I need to move beyond and get back to the routine of living, but I also can’t ignore the dark consideration that death IS a potential.

I try not to think about it so much, but it’s incredibly difficult and I often find myself lost in my own thoughts…sometimes at the most inopportune moments where I have to suppress the emotional weight of it all lest I melt into a blubbering mess in public. Sometimes my thoughts are triggered by a sentimental commercial, sometimes just having too much headspace, but most of the time I become consumed while trying to fall asleep. Just last week I was wiping away tears as I lay in the dark, my son already asleep in the bunk above me, then a feeling like a physical weight pressing down upon my chest as I imagined him growing up without me and me missing out on the same. I just don’t know how to process missing out on my son’s life, being there for him should he need me and, honestly, I don’t think I ever will. The love of a parent isn’t necessarily irrational, but might be irreconcilable with the tragedies of existence. And this might be one of those times.

I can handle surgery. I can handle chemotherapy. I can handle the interests of my previous life taken by cancer. But not being a father… and chance robbing Auggie of his, well, that’s just a reality I can’t process.

He is still with me this summer, one week left of our time together and you can believe I’m absorbing every second of it, spoiling him whenever I get the chance (within reason, of course) and making sure I don’t take for granted one fleeting moment. It’s gonna hurt more than ever when he leaves this time, but I’m grateful to have this time together and am looking forward to all our experiences to come, at some point hopefully cancer-free, so that any questions he may have about this experience can be answered in the past tense.

YOLO

I feel incredibly driven right now. Motivated. Inspired. As if juiced on shots of espresso coupled with bars of dark chocolate, I am compelled to take on the world…so to speak. But this worries me.

It worries me because I know the drive isn’t rooted entirely in a grounded perspective, but brought about by my somewhat desperate circumstance of living in limbo, not entirely sure if this cancer story has a triumphant end, complete with comeback story and all that, or gets cut short, an unfulfilled conclusion. It worries me because it does feel desperate to an extent, like I’m taking the coupling of this downtime and physical ability to make the most of it….just in case….just in case I can’t down the line.

No regrets, ya know? YOLO. (sorry, I’m on vacation at a beach)

Admittedly, part of this is the restlessness I feel with an abruptly halted life – where I’m unable to work a consistent job that would be interrupted by physical fatigue, bouts of pain, emotional stress, chemotherapy treatments, doctor’s appointments, and an upcoming surgery – and so this blank slate in front of me begs to be filled, with anything that gives me a sense of purpose. Where running once drew onto that slate at least once a day, leaving me with a sense of accomplishment at the end of every day no matter what else occurred, now I’m left wandering, often without a long-term purpose and so I feel driven to fill that space. I NEED that goal seeking, that sense of accomplishment, no matter how short term. That restlessness has me planning and scheming, trying to make the most of my days.

To that end I’ve planned a backpacking trip outside Asheville, North Carolina during the month of August. I’ve registered for a Century ride in Wisconsin with Team In Training (A cancer research fundraising organization) in September. And I want to do everything else….all the things. All. Of. Them.

I want to take the backpacking trip and complete the Century for various personal and external reasons, but everything else that enters my headspace and goes swimming around gets trapped in that more desperate space in my head, where a voice speaks quite pointedly to me.

It whispers…or more YELLS…”This could be it. This truly could be it! Your cancer may be dying…or it may not, but until you know for sure how this story ends, you better take advantage of every moment you have to make the most of it, because the last thing you want is a personal eulogy filled with last moment regrets!” It screams desperately.

Which, admittedly, feels a little weird, because I feel the furthest thing from dying. It’s not that I don’t feel the cancer, as I certainly do, but I’m getting by just fine despite it’s presence inside me, and so to concern myself with aspects of dying seems a little premature and exaggerated. That’s not the point though. The point is that it’s there and survival rates are never 100%. To be honest, I don’t know mine…the survival rate of my specific type of cancer, but I do know cancers are never 100%. Some are 80%. Some are 50%. Some are much, much worse. And until I’m told that my cancer is dying and that things are looking pretty damn good, I can’t help but feel a very immediate and continuous sense of desperation. I can’t help but feel driven to do all the things, to live the life I desire if typical obstacles didn’t stand in my way, to fill each day and take each opportunity to engage with my physical self. This is what matters to me. And so desperate motive or not, I’m going to take advantage of it.

Then today I rode my bike down the coast, pushing through the headwind on the way out and then riding the tailwind on the way back like I had sprouted wings. The rock barriers held back the sea and blew past me as one blurred unit. I rode hard up each bridge incline and even harder going down the other side. The ocean breeze was warmed by the sun, but cooled on my skin as I cut through the air. Off to my right I caught a shimmer on the surface of the water and looked over to view an expanse of various shades of blue, sliced through by the bright orange sun…and I felt incredibly small. I could see for miles. Miles of but a few elements. Water. Sky. Sun. And those miles continued past my physical abilities, all the way to the other side of the ocean…somewhere…and I continued pedaling on a blackened strip of asphalt, mostly alone. I was small. So small in the expanse of the world, a mere blip, or not even, on the radar of existence. And I realized inside me was another ocean, with another seemingly limitless expanse, and microscopic cells filled with an intense killing power.

And somehow nothing mattered so greatly anymore….in the most liberating sense imaginable. Those tiny cells inside my tiny body riding next to a tiny ocean on a tiny planet in a tiny universe cradled by another tiny, incomprehensible existence that makes up the ever growing not at all tiny everything…and suddenly my cancer was just kinda ridiculous. And the voice of my desperation, of my (potential) dying process (and living process) was quieted.

It’s not necessary to do all the things. It’s not necessary to be so concerned about missed opportunities, lessened moments and days of rest, but it does not mean one gives up either and doesn’t make the attempts, take advantage of the open space and opportunistic moments, because again, that is what matters to me. I don’t want to live my life as if I’m dying. I don’t want that sense of desperation dictating my actions. I want to live actively and live well because doing so is worth it for it’s own sake, no matter our relatively meaningless place in the expanse of existence, no matter what hardships befall our bodies. I want to live for the sake of living…not because cancer is calling the shots.

So there is the very real potential that my body is slowly dying, or being killed if you will, but I’m not going to succumb to the desperation of that potential. Because there is also the very real potential that my body is living again, killing the cancer inside of me and slowly regenerating back to it’s normative, powerful state. For now desperation can wait. Maybe it’s day will come, but for now, I’m going to live all out for the sake of living all out, as we should every chance we can create for ourselves, cancer or no cancer.

See you on the trails of the AT and the roads of Wisconsin.

I’m Ok.

I’m Ok. Really, I am…but that’s also to say, I’m JUST Ok. I’m not good. I’m not great. I’m just Ok.

And that’s all I can muster as an answer when friends and strangers alike ask me, “How are you?”. As the saying goes, Honesty is the best policy, and so I’m trying to stay honest. Granted, sometimes I could say, “I feel good…even great!”, but at other times I could say with equal fervor, “Shitty. I’m absolutely shitty.” So I split the difference and call it like it is….”I’m ok.”

I’m ok because I have great days. Absolutely great days, where the effects of chemotherapy are minimal, I can breathe freely, and I’ve gotten out and ridden 30 – 40+ miles. Those days are awesome and it’s funny to think I even have Cancer in the midst of all that.

But I’m also ok because I have shitty days. Really shitty days, where getting full breaths takes effort, the discomfort in my abdomen and bowels is incredibly disrupting and I’m emotionally worn down from cancer. From having it. From treating it. From thinking about it.

Put great and shitty together and you get….just ok. And that’s what I’m sticking with, because no matter the day I’m having, cancer is ALWAYS THERE.

And it’s quite tiring.

I truly get emotionally worn out from just being AWARE of cancer. I can’t escape it. Granted, I do bring a great deal of this on myself…talking about it, blogging about it, joking about it, facebooking about it, etc., because it helps me understand, cope and process…but still, it gets old. I really struggle trying to find the mental space, the physical relief and the times to escape the fact I have cancer.

When I wake up I have cancer. I know this because I wake up without much purpose, but to actually get up. I know this because I usually feel a great discomfort in my bowels that is difficult to relieve until later in the morning.

When I go through the day I have cancer, because I can’t escape it. It affects the way I walk. It affects the way I eat. It affects how much physical activity I can do. It is there on vacation, my skin too easily burnt from the effects of chemotherapy, my chemo port sticking out from my chest and adding to my self-consciousness. It is there in my parenting, as I protect my abdomen from errant head butts from an overzealous and physically excitable six year old who doesn’t know any better. It is there when I go to sleep and can’t find a comfortable position to lie in due to a crowded abdomen or post-surgery discomfort. It is there when I eat too much and it is there when I eat too little, both bringing spasms of pain through my stomach.

Like I said, I’m only ok, because I can’t escape it.

And then, it’s also in my head….understandably. I mean, I’m currently in the thick of what could be a life and death limbo. How can I be “good” or “great”, when I’m about to enter my 3rd dose of chemotherapy, get a CT scan and then find out if the tumors are actually shrinking or not, which essentially determines the next course of action and gives an idea of whether we’re actually “beating cancer” or not. Sorry to be blunt, but in a way, that CT scan feels like the determination of if I live or die. That realization is not lost on me, so despite planning a century ride in September and a weekend backpacking trip in August and riding my bike as much as possible and becoming absorbed in parenting my son this month and generally “living against cancer” and “thriving not surviving”, the reality of my mortality tempers my enthusiasm and keeps me grounded with a solid, “I’m ok”.

But with that said, I am ok…which is a lot more than other cancer patients with worse diagnoses and physical conditions can say. Hell, it’s more than a lot of non-cancerous, “healthy” people can say. I’m ok because I refuse to sit and wait, to let myself become absorbed by the weight of my circumstance, because I still get out and live against cancer every opportunity I can create, because I can still make jokes about getting cancer from reading too much non-fiction and not doing Zumba (seriously, I think I’m on to something here). I’m ok because despite how everything can royally SUCK, how flooring chemotherapy can be, how difficult it is to escape all this…I’m overcoming, climbing cancer mountain (Upness!), and finding drive and purpose in the everyday.

So trust me, if you ask how I’m doing, I’ll respond, “I’m ok”, not because it’s the trite, simplistic, default polite response, but because it’s the truth. Because when you weigh the bad…which is indescribably bad…against the good, that I’m maximizing to it’s fullest potential, you end up with an accomplished middle ground, a simple “Ok.”

And right now, I’m Ok with that.

I Have Cancer, Not the Other Way Around

Let’s get one thing straight.

I have cancer. Cancer doesn’t have me.

Which is my way of saying that no matter what may be going on in my body right now (what exactly IS going on in there?) and no matter what physical setbacks I may encounter from the treatments themselves, I’m not a sickened, weakly, bed-ridden specimen. Quite the contrary, each day away from my initial surgery, I’ve only felt stronger and stronger, feeling and watching my body regain all the capacities it had prior to going under the knife. And it’s only been just over 2 months, with an initial 6 month recovery time. If everything had gone as planned and chemo wasn’t even a thing in my life, I’d be well on my way to building strength, endurance and looking ahead towards my first race back.

Of course, everything DIDN’T go as planned, but that doesn’t mean Cancer owns me now. It doesn’t. To be honest, I’m not sure if the internal issues I experience on a daily basis are related to cancer or surgery recovery, but no matter, the important thing is that whatever I’m experiencing at this point is not hindering me from living my life and doing the things I love. If for some reason I COULDN’T get out into the world, I COULDN’T get on my bike and ride, COULDN’T lace up my shoes and run, then maybe I’d look at things a little differently, but right now Cancer does not have me. Right now, I’ve got it by the throat.

And I’m not just “surviving” cancer, I’m THRIVING against it.

Each morning I wake and go through my typical routine. Teeth. Coffee. Toast. Then I change into my cycling kit, gather my riding basics and head out the door to put in 25, 30, 35 miles on my bike, powering up the inclines, throwing down effort when the energy hits and riding my legs into the familiar weakened state that tells me I’m only getting stronger and stronger. And I am. Ever since the trail run I did in Brown County I’ve been consistent in my physical activity, getting on my bike every day and putting in work, feeling my lungs take the accelerations with a greater and greater ease, and watching my calve muscles twitch when I’ve thrown my legs up on the porch ledge to rest post-ride. I am getting stronger, but not because I’m preparing to race. Not because I’m gearing up for surgery (too far down the road for that just yet), but because the life I lived prior to cancer was the life I always sought to create and I’m not about to let a little gutting surgery and periodic poisoning put a halt to that. My cancer isn’t THAT strong….and I can only hope we keep it from building strength.

I run and I ride because I want to live AGAINST cancer. I want to live IN SPITE of cancer. And there is no reason that when physically able, anything should really change in my life if I don’t want it to. I’ve done a little cleaving of my peripheral interests here and there, but the core of my existence still stands. My attempt at healthy eating still stands. My physical efforts still stand. My vegan ethics still stand. My desire to parent still stands. My expressions to inspire others still stands. So no matter what episodic setbacks come my way, physical or emotional, I know they are very temporary and the core of my being has yet to be broken.

Every time I get on my bike and ride. Every time I hit the trails and run. Every time I continue the forward trajectory of my life, cancer exists only as a potential future obstacle and only a present annoyance instead of a force more powerful than it’s host.

Trust me that I don’t romanticize my actions. Cancer does affect me emotionally and physically, but in no way does it drag me down. In no way, at this point, does it render me weak, broken and useless. If you think otherwise….I challenge you to a race. Ok, I kid (mostly), but to be honest, it’s not lost on me that I’m able to do more physically WITH cancer and in the midst of treatment than many others I see going about their lives overweight, passive and unenthusiastic. If that doesn’t prove I have cancer and not the other way around, I don’t know what does.

———————-

Speaking of physical efforts and making the most of our days, I’ve (loosely) committed to riding with Team In Training at the Door County Century (100 miles) on September 8th. Team In Training raises money for Lymphoma and Leukemia research, both devastating forms of cancer, and I’m going to give back a little by hosting a fundraiser here in Indy the month of August before I head north and ride the Century with the team. I’ll update details about this fundraiser and ride as everything develops.