Monthly Archives: May 2013

My Life as a Country Song

Even before this whole cancer thing hit, I couldn’t help but laugh at the slow “degeneration” of my life, where just a year prior it seemed like I was on top of the world when the ravages of time and responsibility slowly took their toll, eroding away the foundations of my financial, physical and emotional security. I had gone from a happily married man with a solid job to a shaky individual daring not to whisper, “well, I’ve finally hit bottom”. To be truthful about it all though, there was a release in the degeneration, where over time the stresses had slowly built to a point that I was becoming miserable at an equal rate, so when everything started to fall apart, it was like I was let go from so many emotional bindings that kept me from a greater personal happiness….which is probably why I’m ok putting all this down for you to read.

Like I said, I did not dare whisper, “I’ve hit bottom”, because honestly I was scared, knowing full well that this was NOT bottom. And I didn’t want to tempt the fates, to throw it in the face of life. “Hey life, I’ve hit bottom and guess what…this is cake! I’m only going up from here!” Because, of course, that WASN’T bottom. So much as THINK you’ve hit bottom and life will hear you. It will hear you and say, “Oh really? You think THAT’S bottom? Well, try THIS!” And next thing you know, you’re scraping the sides of a dumpster for sustenance…and not in the way punks and anarchists have made it cool. So I didn’t say, “I’ve hit bottom.”

What I did, however, was make an amusing list for myself in terms of romantic attraction. It was a completely light-hearted mental list, where I tallied all the ways in which my life had become stereotypically UNATTRACTIVE to the opposite sex, relegating me to a life of solitary, psuedo-single parenthood…which, believe me, I was perfectly ok with. I was not doing this in any sort of “Oh woe is me, such a pity that no one will ever love me” sort of Morrissey song lyric sort of way. I was just evaluating the changes in my life and having a good laugh at it all. Because as far as societal standards and what makes an individual attractive to others, this is what I had working against me.

1. I have a child.
2. Said child lives across the country, lending to the idea that I’m an uncaring/deadbeat parent.
3. I have a tenuous relationship with the child’s mother.
4. I’ve been recently divorced.
5. I just got laid off from a job of five years.
6. My new job pays an insultingly low wage.
7. My debts dangle me over the cliff of financial ruin.
8. I sold my car and now ride a bike everywhere. (Hey, I’ll pick you up in my trailer at 8?)
9. I’m an obsessive runner with LITERALLY 2 hours a day of free time. (Meet me at the coffee shop between 9 & 11 for a date?)

And so there was all that. I couldn’t imagine what sort of woman would find that sort of lifestyle attractive, but here’s the thing. I didn’t care. I didn’t have a drive to be in a relationship with anyone, knowing full well the very logistical problems my lifestyle created to even having an effective relationship. I wasn’t going to give up work. I wasn’t going to give up running. So, how would that even work? Whatever…like I said, I was completely ok with it. I continued on, walking the tightrope of obligations I had created for myself day in and day out…until my stomach hurt.

And then…well….cancer.

What did you say about “hitting bottom”?

I had to laugh, again. If my previous life raised every obstacle against developing a fulfilling and stable relationship, well, here was another one for the list that took it from laughable to downright absurd.

“Hey, can I pick you up at 8? You can ride in my trailer. I’ll take you to the hospital and we’ll have a nice discussion about our future as I have poisons dripped into my body during one of my chemo treatments. On the plus side, if the chemo doesn’t work, we won’t have so many decisions to make about our shortened relationship!”

Come on, laugh with me. It’s absurdly funny. My life had become a country song…without the dead dog.

On the other hand, this whole consideration of my past “unattractiveness” (societally speaking anyways) has compelled me to think more deeply about relationships in the face of cancer, which I had the pleasure of discussing further with a friend who has also found herself in the land of illness, fighting off the effects of chemo and fumbling through the complications of building a relationship in the midst of both cancer and its surrounding issues. I’m told it’s hard to make-out when the effects of cancer on your body are constantly interrupting your attempts at romanticism and physical intimacy. I’ll take her word for it.

Personally speaking, I currently have ZERO drive to be involved with anyone romantically, which might go without saying. The very idea just tires me out, because, well, everything tires me out right now. Eating. Walking. Talking. Etc. So to even think of establishing a romantic relationship with anyone sounds downright exhausting…more so than it can already be. There is just no excitement, no passion, no inspiration to even HOPE for it. I’m entirely, if I may use another Morrissey reference, ASEXUAL at this point. See, you have to understand, right now every bit of my energy on a day to day basis is spent just navigating the hours I’m awake, trying to do something that doesn’t entail laying in bed wasting away. Sometimes that’s just sitting on the porch reading a book for hours. Sometimes that’s going to the coffee shop to just BE in public. Sometimes that’s just trying to not feel like crap. And those simple tasks often tire me out, leaving me laid out on my bed for a quick nap to rejuvenate, so to think I have any extra energy to spend worrying about someone else’s emotional state just sounds awful. I couldn’t do that to myself, let alone someone else. And it should go without saying that the need to concentrate on myself so deeply leaves me with no emotional desire to concentrate on anyone else.

That seemingly ever present emotional drive to love or be loved is simply NOT THERE. It has instead been replaced with the most selfish consideration I have ever experienced, where the only thing that matters is keeping me physically comfortable, having private space to revert to and the time to manage all the unpleasantries that come with the cancer experience.

Then there is another fear, admittedly pessimistic, but which is worthy of consideration. Right now I don’t have the drive to consider a relationship, but even if I DID, the person I am at this point is most likely not the person I will be when all this is over. For the sake of this consideration, let’s just assume I make it past cancer and live illness-free. So, to start a relationship as an identifying “cancer patient”, or whatever, is going to encounter serious problems down the line when cancer dies and my identity reverts back to “obsessive runner”. I tried not to identify as a cancer patient when the news first hit, because I still felt very much like myself, still able to ride my bike all out if I wanted, still looking forward to the day when I could start running again. I may have had cancer, but my identity was very much as a distance runner. Over time though, and specifically after surgery, my physical life changed drastically. I can’t run. I don’t know when I will be able to run and what that will be like when I start again. I can barely ride my bike. I can barely do anything without concern, even just walking the grocery store, and the timeline attached to getting better has been extended far off into the future now, which means avoiding the identity of a cancer patient has become damn near impossible. This whole experience now consumes me, and so the person you know at this point isn’t necessarily the person I was pre-diagnosis. Sure, I am still ME, but this cancer identity can’t be denied and how I have responded to the awareness of having cancer will have it’s effect on my identity as well. Without fail, when this is all “over”, I’ll be a different person. I will carry some of this cancer identity with me, but I’ll also be eager to shed a great deal of it as well, hopefully getting back to the person I once was. That type A, hyper disciplined, obsessive distance runner hell bent on taking down my list of PR’s.

And that’s dangerous for a relationship. Who I am now may be very different from who I am post-cancer. Or, to look at it optimistically, maybe not. Maybe who I am now might carry on and make me a much better/more attractive person post-cancer. Who knows?

And finally, there is the concern of starting a relationship in the midst of a life-threatening illness. This hasn’t been my experience per se, but certainly something I’ve considered. My friend, however, has expressed her amusement at friends who have suddenly become “caring” in the face of disease. There is an apprehension of creating a relationship in the midst of one’s vulnerability, which lends to attracting a “fixer” or a “hero”, someone who wants to make you better, who wants to be there because no one else will touch you, who is less reserved in seeking your relation because you’re in less of a position to fend them off. As my friend and I both discussed today, we are both fiercely independent individuals, so although there is an undeniable need to be taken care of at this point, somewhere down the line that need is going to fade away and the foundation the relationship started on will suddenly be gone.

Ultimately, cancer is an abrupt change in one’s life, that takes one from being active and self-sufficient to suddenly an individual of helplessness (to varying degrees), that not only takes its toll on them physically, but also emotionally. Personally, I can’t even imagine how a relationship would work in the face of such physical discomfort, logistical obstacles and emotional bi-polarism, which probably has led me to not feel even the slightest inclination towards romantic aspirations. Hell, right now I’m more concerned about having regular bowel movements than I am making someone feel emotionally fulfilled. Admittedly, this might change down the line, or it might not. I’m ok with that really…right now, I have a bigger consideration to manage, an emotional state to protect and both a 36 and 6 year old heart to fill. Any other hearts will have to wait until both are strong enough to handle life at it’s easiest. Right now, that is not the time.

De/Re-Generation

It’s not easy watching my body wither away.

I am so grateful to have had a photo taken on the last “real” run I did, when a friend and I ran 30 miles on the trails of Southern Indiana. It was another “epic experience” notch on my belt, not to mention the first day of the year we could run shirtless….so we did. And when the run was over, we documented the day by taking a photo of the two of us, myself wearing nothing more than shorts, shoes and thin gloves. I look fit, strong, and relatively trim (oddly enough, the cancer in my belly had become such a problem at this point that I can now tell in the photo that I’m not as slim as I should have been).

As a high-performing distance runner, I’ve not only become fascinated by the transformation of my body through various training cycles, but have even learned to take pride in my physical condition. I’ve become appreciative of the efforts made that built my muscles, slimmed my body and toned my physique into an incredibly efficient machine built for running long distances at considerable speed. There was very little dead weight, extra muscle, or any other performance sapping excesses. As a stupidly skinny kid who grew up rather ashamed of his body, being frequently ridiculed for my weak stature and spindly legs, it was a personal victory as an adult to have sculpted my body to the state it becomes during peak training. Running gave me the ability to see my physical self as not just effective, but attractive.

And now that is gone, ravaged by the process of degeneration.

There is a common phrase in the running community, “Use it or lose it”, which explains the need for a runner to keep their fitness by continuing to use it. Stop running and all that fitness you built, all that strength and endurance, will quickly begin to fade away. You can’t stop running for two to three weeks and then expect to pick up where you left off. No, it doesn’t work that way. You use it, and continue to use it, or lose it. And that is exactly what happened to me post-surgery, but to a much more extreme extent, of course.

Now, I’ve “lost fitness” during periods of injury, but never to the degree that I’m experiencing right now. I’ve lost fitness after being unable to run for a month or two during injury, but during that period of non-running I was able to do other activities. I could still ride a bike, still work, still lift weights, and stay generally active during the day. Now, however, those options aren’t so practical. Right now, I’m having trouble doing more than just getting to the coffee shop to sit and knock out a blog post, and in that my body continues to wither away.

It’s not that I didn’t expect this, but realizing it and seeing it are quite different. I first noticed my physical degeneration in the hospital when I went to wash myself for the first time. I stood in the bathroom under the harsh mirror light and the shadows cast accentuated the dips in my face, my sunken eyes, and protruding bone structure. I looked, definitely sickly. I began washing my arms with a wet washcloth, and although those also seemed skinnier, it was hard to tell any marked difference, but once I got to my quads I was quite surprised. The muscles that once pushed my body forward, bounding up hills and bracing back down, had shrunk to a visibly weakened state. The strength and form had both been smoothed over with passivity. I then started taking visual stock of the rest of my body and noticed that everything had weakened, shrunken or almost disappeared. Bones stuck out where bones didn’t use to stick out. Glutes lost their powerful shape. Toned muscles now melded into other ares of the body without any noticeable demarcation. I’ve withered away.

Of course, I was also just cut wide open, my insides shoveled out, and had been confined to a bed and the perceived weight of morphine for 6 days in the intensive care unit. Add to that passivity, a dripping liquid diet coupled with the metabolism and caloric needs of a distance runner and it only makes sense that until I was normal again, I would continue to shrink towards a state of nothingness. Fortunately, after another week in the hospital, I started to regain my bodily functions and could start eating solid foods again, focusing on the muscle building properties of protein and indulging in high-caloric foods without reservation.

Still, I have a ways to go. It has been exactly one month since my surgery and forced state of passivity, so to think I would have regained my strength or bodily form at this point is laughable. Just like in running, I haven’t used it, so I’ve lost it, and all the same, it’s going to take some time to get it all back. And that’s what I’m concentrating on right now, eating healthy, protein-dense, high-caloric foods to rebuild what I can while I wait for more strength to build. The other component to building my body back up involves physical activity, but that has been quite difficult as well, trying to find both the emotional and physical drive to get active amongst all the discomfort that racks my body, whether that is internal morning pain, fatigue in the afternoon, or skin sensitivity when my pain pills are wearing off. It’s simply not easy.

There is a hopeful element to this process of physical degeneration, however. In training, I was constantly working through a pattern of building and destroying the body. We ran hard to break down the muscles, then rested to build them up even stronger, only to run hard and break them back down, to then rest and let them build even stronger. That is the process, but sometimes we would develop injuries along the way, injuries that our unrelenting drive would not let us tend to appropriately, letting them linger or build until they became permanently problematic. I struggled with this often. The appropriate way of dealing with injury, of course, is to let the body rest, let the injury heal…but that means no running…and who wants to do that?

Well, now I CAN’T run. It’s just not an option, which DOES suck, but on the other hand, this forced passivity is like hitting the reset button on my body. It’s taking away all my muscular strength, cardiovascular strength, and so on, but it’s also taking away all my muscular stress, overworked joints and tendons, and resetting all the “niggles” and injuries I was dealing with prior to the cancer diagnosis. I’m truly withering back to square one, back to that point in my life where I had not yet begun the physical repetition that targeted all the specific muscles and bodily systems that allowed me to perform as a runner at the level I was.

So once the reset button has been pushed, once I’ve found myself standing on square one, I’ll be able to take that first step forward and start the process of regeneration, without that previously held muscular strength, but also without weakness and injury. I’ll be an overly rested runner, ready to get back at it again, but this time with a considerable bank of knowledge on how to do it “right”, how to build slowly, how to train smart.

Right now, I’m in no hurry. I’m still very much in the throes of degeneration, knowing very well that I’ll be broken down through chemotherapy and going through this whole process again when I lay back down on the operation table, but I still hold to the awareness that SOMEWHERE down the line I’ll begin again. I’ll be able to put the process of degeneration behind me once and for all and finally begin the process of regeneration, to some day take another post-run photo where I, again, look strong, fit and fast.

The Daily Discomfort

The bottom line is, I just don’t feel well. Constantly. Every day.

This is to be expected, of course, considering I suffered through an extensive surgery not even a month ago, but the greater frustration lies in not knowing what to expect through this recovery, not having a timeline for feeling better, not knowing when I’ll be able to function relatively normative throughout the day instead of wanting to crawl into a hole and hide. The only thing I AM sure about on a day to day basis is just how crappy I feel and what meager efforts I can make to manage the discomfort. Unfortunately, I know others are still not able to understand how I feel and are concerned about the person I’ve become, in contrast to the person I was. I think a lot of people thought I would be this hyper-exciteable, go get ’em, physically and emotionally active person through all this, which is what I tend to be in my normative state. Believe me, I wish it could be that way. But, as we all experience in moments of sickness, the people we are become drowned beneath the weight of the illness and we succumb to just waiting it out. That’s kind of how it feels to me right now…I’m just waiting it out…not wanting to make an effort and would rather hide inside a dark cave until it all passes.

To be more exact about how this all feels, I’ve been explaining it to friends this way. It feels like I have the flu….times 2.

You know that feeling you get when you have the flu, where your back is achy, you get the chills no matter what the temperature and your skin is SUPER sensitive, whether to the touch of skin, clothing or anything else? Yeah, well, that’s how it feels all the time. And it’s the sensitive skin that is the worst above it all.

It’s funny, because cancer is just this….thing. It’s just these tumors that are there, causing problems down the line if unchecked, but it’s all the crap associated with dealing with those tumors that cause all the discomfort and misery of “having cancer”. For me, cancer is not the problem. The problem is whatever part of the process that is causing this great and continuous discomfort I can’t seem to shake. That’s the part that really wears a person down and compels one to just hide and wait it out. But even that’s not good. It gets old.

I’ve watched more TV in the past month than I have in the past 3 years of my life. I know far too much about where our culture stands in both morality and entertainment than I really care to know. My days have become so repetitive that there is little surprise or excitement, and even if there was, I don’t know if I would enjoy it. To help explain this unenjoyable existence, this is how my days are currently going.

I wake up every morning at 7am, feeling rather miserable after an entire night without a pain pill, and so the first thing I do is reach over and swallow one of my pills. I roll back over and wait out the following hour for the pills effects to kick in, erase that horrible sensitive skin feeling and give me enough relief to go about my morning. An hour later, about 8 o’clock, I’ll have enough respite to brush my teeth, make some oatmeal, take a shower, check up on social media and maybe do some reading if I’m feeling up to it. Then about an hour and a half later, around 9:30, the party starts to wind down and the discomfort creeps back in, slowly compelling me to lay back on the bed and try not to move around too much, keeping the blankets off my stomach and my t-shirt from rubbing the same.

I find myself passing the morning watching TV or reading, counting down the hours until I can take my next pill at noon. Right at 12 I’ll take another pill, wait out that hour for things to kick in and then hopefully do something productive for that short period of relief. Lately, that has meant going down to the coffee shop with my dad (or alone) to just hang out and do some reading or writing, just anything to get me out of the house, out of the bed and away from the TV. On my best days I can plan a trip to the workout room to get on the treadmill, but I’ve struggled with getting back there the past three days, whether due to a greater feeling of discomfort or schedules not lining up. Regardless, I still have that hour and a half window of relief before, again, the unpleasantness of the whole process comes back and my emotional misery grows in concert, driving me back home to the safety of a quiet environment where I don’t have to make an effort to converse, move around too much or become annoyed by the trivialities of daily life.

The countdown begins again to 5:00 when I take my 3rd pill of the day, allowing me to get some much needed nutrition in me and to just feel better as I lay into the night watching TV or movies until bedtime takes over, which is when I take my final pill to help lull me to sleep amidst the overall achiness and horrible feeling of sensitive skin to even the most slight of movements.

And these are my days, everyday. A constant attempt at relieving such a terrible annoyance of sensitive skin that compels me to do nothing but sit still all day, or pop pills like they were tic tacs, which unfortunately, is not an option for either.

The worst part about this again being the complete lack of timeline for recovery, having no idea when this is all going to end, coupled with not even understanding what causes this in the first place. I mean, it could be the residual effects of withdrawal from a few very strong pain meds. It could be the lasting effects of having my insides literally washed with poison through the heated chemotherapy treatment that took place during the surgery. Or, hell, maybe it’s the fact that I was basically gutted through a massive incision, parts taken out, other parts scraped and beaten, and so on. Who knows….I don’t…but ultimately, I don’t even want to get back to great, or even good, at this point….I just want to get back to functioning. I don’t want to rely on pain pills to get just a few hours of non-consecutive relief during the day. I want to meet friends any time of the day instead of scheduling them in accordance to when I took my last pill. I want to entertain friends that bring food to me instead of suffering through conversations with barely any energy to be exciteable. I want to meet friends in public and talk without effort, without wanting to put my head down and just go to sleep, without feeling the urge to cut them off mid-sentence and say, “OK, i’m done. Sorry.” and then walk away. Because that’s how I feel, and I’m sorry.

Like I said, I don’t feel well, and it sucks. And I know this isn’t how people perceive me, but in this physical state, I’m having a difficult time wiping the sourpuss expression off my face everywhere I go and being a little more civil and predictable. So for that I apologize, but in the meantime, I’m continuing to keep my contact limited to others, because frankly I can’t handle much right now. Whether it’s extended conversations, public noise, literal bumps in the road, and so on. On the other hand, I can’t handle much more TV right now, much more sitting in bed, much more daily repetition.

Of course, all this will pass. I know this. I’m in a waiting game and that’s all I can do right now, but hopefully this will give you an idea of what I’m trying to wait out and why, despite being out of the hospital, you may not be seeing me around, or if you do, why I may not be the most pleasant person to be around. Above all though, I look forward to getting past this, feeling functional, and able to enter the real world without issue again. I’ll look out for ya.

FUNdraisers!

A few benefits/fundraisers have been organized on my behalf and it would be rude should I not even mention them on this blog considering the amount of work that have gone into them. For the sake of full disclosure, the money generated by these fundraisers are helping cover all the daily living costs that I am struggling with now that I am unable to work. These are things such as rent, food, utilities, bills, child support, etc. The hospital bills will be so astronomically high that no amount of fundraisers could even being to make a dent in that tragedy, and we are handling that situation through other means (medicaid, charity forgiveness, etc.), so all funds are being directed to keeping me “ahead of the game”, so when the time comes that I’m able to get back to fending for myself, I won’t be digging myself out of debt for the rest of my life or jeapordizing any parenting time with my son.

Regardless, I am deeply grateful for those who have stepped forward to donate to the various funds, organize an event, buy a t-shirt, etc. etc. etc. Y’all are saving my ass. With that said, here is what has been set up for the time being.

Auction

The site below contains a number of amazing items up for auction, all donated by local artists and various businesses around the country. Everything from concert tickets, to tattoos, to jewelry, to bike apparel, etc. etc. etc. There are so many great products here and I hope you consider supporting some of these amazing people and their work.

http://www.32auctions.com/raisehell4scott

Bike Ride

If you live in the Indianapolis area, a bike ride will be held on Thursday, May 30th at 6pm. The ride starts in Broad Ripple and ends at the City Market downtown for libations and great company. Sun King Brewery has donated a keg and all proceeds go towards my fund. Limited Edition Legs & Lungs T-shirts are also available for purchase, that can either be picked up at the beginning or end of the ride or simply bought online and shipped to your house. All proceeds of the first 100 shirts go towards my fun and $10 of each additional shirt sold will go towards my fund. You can order shirts at the url below, but I hope you can make the ride for all the great camaraderie as well.

www.teamlegsandlungs.com

Metal Show

If aggressive music is your thing (it is mine!) a couple local metal bands fronted by friends of mine have put together a crushing show that will go down AFTER the bike ride on the 30th. Basically everything has been donated for the show (sound, venue, etc.) so all funds from the show go towards my fund. Come out and rage to Coffinworm and Conjurer.

Details here.

General Donations

To all who want to help Scott financially:

Ignore what Scott ever said about not wanting financial help; he forgot anarchy and smiles don’t pay medical bills. If you are wondering why Scott doesn’t have insurance, it is because he had to be at his current job for 6 months before he was eligible and he was there only 2 months. There is no fundraising goal at this point; every bit will help.

A new bank account is set up managed by Scott and his parents. If you know Scott at all, you know he’ll be transparent and ever-grateful for your help. You can contribute via PayPal or by check.

PAYPAL:
1. Send money to Scott at urbanwings@hotmail.com
2. Choose *Send Money Online and *I’m sending money to family or friends
3. If you are sending money by credit card or another way that requires fees, you can choose to either have the sender or receiver shoulder the fees. If you can, please have the sender take the fees.

CHECKS:
1. Please make checks out to Scott Spitz
2. Mail checks to Mary Beth and Thomas Spitz at 2162 Heather Glen Way * Franklin, IN * 46131

Thank you. Thank you.

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These are currently the active benefits organized in my name, but I know there will be more in July and the upcoming months. I’ll do my best to publicize the events as they are organized. Again, thank you so much for the support you have offered to me during this trying time. Every dollar, meal, benefit, word of encouragement, etc. etc. is deeply appreciated. Thank you.

Also, check out the Raise Hell 4 Scott Facebook page for more updates.

The Exceptional Exceptions

I am a very self-reliant (read: stubborn) person. I don’t like being a burden upon others or being waited on…nor do I like being subjected to others way of doing things that may not fall in alignment with what I think are in my best interests, so it was a hard pill to swallow laying flat on my back in the ICU, being kept alive by various machines, fading in and out of a state of half-consciousness, and always at the mercy of the changing shifts of nurses rotating throughout the day.

After a few days in the ICU I started to get a general sense of the routine and what to expect. Vitals checked. A small rotation to keep from getting bedsores. Fluids replaced or replenished. Blood drawn from the port sewn into my clavicle. It became less frightening as the routine repeated itself, and I was left only with the concern of the type of nurse I would have on each rotation.

Sometimes I woke to a brand new nurse, not even aware a change had been made, while other times I was offered a polite goodbye and a proper changing of the guard. My first reaction during these exchanges was to always pass judgement. Notch it up to a survival mechanism, but it never took me that long to watch the new nurse go about their business and ascertain what sort of personality I would be dealing with for the next day or so. And for as many nurses that rotated through my room, there were an equal amount of differing personalities that would either put me at ease or cause me to stand at attention.

There was the almost robotic nurse who said very little, going about her business as if on auto-pilot, checking vitals, replacing fluids and offering little in the way of conversation until her shift with me ended and she cheerfully said her goodbyes. There were the younger nurses, quite apt in their abilities, but delivered with a much greater sense of compassion and care than the rest, most likely not hardened by the repetitive experiences that must drag the most well-meaning nurses into states of frustration and hopelessness. There were the veteran nurses, older and straight to the point, who checked vitals and prodded body parts with a more forceful hand, quite uncaring or unaware that the catheter tube could use a slightly gentler hand in repositioning. There were the newest nurses, still sheltered under the wings of the teaching nurse, some of which who followed orders and others who wanted to know more than they did and couldn’t bring themselves to swallow their pride and just do the job right, making my own time during their shift quite stressful (there is obviously more to that story, but I will leave it at that).

And then there were the exceptions. The exceptional exceptions.

There were two nurses, specifically, who took care of me with an attention that made me feel downright special, as if they truly understood the physical trauma I had just experienced and could respond appropriately to every pain and discomfort I was feeling. I regret to say, however, that the first of these nurses took care of me when I was much deeper down the well of a morphine-induced haze and so the intricacies of her attention have gone missing in my memory, and I can only rely on both the approval expressed by my parents as a testament to her abilities and her decision to come back in and visit on her day off to check in on me and have a brief discussion.

As to the second nurse, I was enough out of the morphine cloud (and well on my way to a depressive clarity) that I remembered her care and attention with great detail. To be honest, I don’t know why she offered so much care and understanding towards me and my lethargic state, or even more so, I don’t know HOW she could offer so much. This may very well be her nature, which led her into nursing in the first place, not out of financial necessity or a lack of employment options, but rather because it aptly suits her ability to care for the sick and wounded. Someone as cynical and skeptical as me may never understand such an inherent goodness, but for my sake, I’m glad she has it.

Needless to say, she took care of me with a gentleness and attention that put me at complete ease in a state of great tension. She was careful in positioning me on the bed, gentle in repositioning the countless tubes coming from my body, described in detail everything she was going to do before even doing it (you have no idea how comforting this is to a patient), knew various little tricks to relieve my pain and discomfort, didn’t push me past my abilities if it was obvious that I couldn’t do what was asked, and most importantly, talked to me. But she didn’t talk to me about trivial things like “my tats” (oh god, next time I go into the hospital I’m covering up my “tats” to avoid all the trite and repetitive conversation). We talked about my son, my ideas, my running, etc. And she basically got to understand a little more of the person I was.

It may sound somewhat trite, but in having these conversations with me she was able to put me at great ease and lend me a sense of comfort I hadn’t felt since arriving at the hospital. All this really came into play when it was time to engage in the less pleasant procedures related to the post-surgery experience. Whether she was washing me from head to toe with a wet washcloth, removing my catheter, taking tubes from my body in which I didn’t even know there were tubes, and so on, having that sense of trust and care made all the difference in the experience feeling invasive and embarrassing or comforting and healing.

I can’t stress enough how comforting it was to have a nurse that cared about my predicament and made the stresses of an ICU stay as minimal as possible. I only wished she could have been assigned to me during my entire stay at the hospital.

I am in awe of the jobs nurses do. They have to develop an extensive medical knowledge, handle the incredible stresses of unruly patients and people in distress, and yet still manage to retain a sense of care and compassion among it all. I know I’M not the person for that job, but again, I’m grateful that there are those that ARE. I will be (hopefully) having to enter back into the hospital again for this experience in a couple months and I hope I have another group of nurses as compassionate and caring as the previous group.

To all the nurses that took care of me and my friends who have entered that field..thank you.

An Honest Life. An Honest Death.

Hey friend. Come here, have a seat. Let’s have a discussion. We’ll talk about some things and use words like “Die, “Dying”, and “Death”. It’s ok. We can say them casually and we can say them matter of factly, in a way no different then when we utter “Life”, “Living” and “Live.” They are, after all, one and the same really. You don’t have one without the other, or if you do, the effect of either is lessened to an insulting degree, wouldn’t you say?

Well, I do anyways. So bare with me, but I’m an honest person and I’m going to speak honestly.

I am out of the hospital and in the beginning stages of self-initiated, post-surgery recovery. I’m taking my pills, getting lots of sleep, protecting myself emotionally, and have now begun a physical therapy of sorts – getting on the treadmill to put in walking miles at at pace that demands a bit of effort. I do this because the next step in my cancer process is chemotherapy, and the goal is to be as strong as possible, as quickly as possible, so that I can both take on chemo successfully (or as successfully as possible) and get to it as soon as I can. The quicker we get strong, the quicker we get to chemo, the quicker we get to surgery, the quicker we get back to life. That’s the trajectory. So for now, to be blunt, I’m training for poisoning. Really, chemo is poison and I’m training not for some usual goal of accomplishment, but rather to combat the effects of poisoning the best I can. It’s kind of absurd.

Regardless, that is the next step, which brings me to the subject of this post. Death. Say it casually, it’s ok. It’s the reality.

When in the hospital, after being delivered the news that my cancer was no longer an annoying 6 month bump in the road, but now a potential life-stopping cliff to drive off of, I didn’t..or at least couldn’t…think about death. There was no point. Not only would it not do me any good, but I had too much to worry about as it stood. I had compacted bowels, intense abdominal pain, endless nights of interrupted sleep. The ONLY thing I could focus on at that point was getting out of there and to the next step.

And here we are. At the next step, a 4 to 6 week building of the body to face chemo. And when facing that chemo, we will also be facing the make or break scenario to this whole interruption in my life. Sure, I will start chemotherapy, but it’s what happens during that process that will determine whether we achieve a best case scenario and go BACK into the HIPEC surgery to kill the cancer once and for all, doing the hospital experience all over again, or….well….we don’t. And I find myself staring down the inevitable trajectory of a quickened death. Either the chemo shrinks the tumors and we can take them out or it doesn’t and I figure out how to rage my life to the end.

Just a quick reminder. It’s ok. We can talk about this. Actually I wish we would.

I know internet communication is so fleeting and reactionary, but frankly, sometimes all the positivity and encouragement falls a little flat. The “Hang in there’s”, the “You’ll beat this thing”, the “Cancer doesn’t stand a chance”….those are all great and understandable, but every once in awhile I want that refreshing breath of honesty exhaled into the conversation. Sometimes I want to hear, “Dude, this sucks. You may not make it out alive, but surely you’ll find a way to make the most of it along the way.”

And maybe that’s asking to much. Maybe that’s just something I’M supposed to say, as I just did, and maybe that’s my role, but I’ve never been one for contrived and trite rituals and phrases delivered with no deeper consideration of what is actually being said. “America is the greatest country in the world!!!” Yeah? Prove it. “Everything happens for a reason.” Ok…under what premise?

But forgive me, I don’t mean to insult anyone’s well wishes. Not at all. I appreciate them all. I appreciate and USE every positive gesture sent my way, but I’ve also been feeling a need for a good dose of honesty, a meaningful conversation, a recognition of our absurdly fragile existence and the value that comes with it. I want to talk about death and dying…to not sweep it under the rug of hope and delusion. I want to look at the process of life and not appease ourselves with ancient stories, not deny the reality of our existence for feel-good purposes, not shy away from the inevitable because we deem it unpleasant.

And let’s not ignore the irony of facing death in our lives every day by the decision we make at breakfast, lunch and dinner. Without a second thought we joke about and dismiss a sentient animal’s life, stabbing into it’s physical flesh with a fork and knife, even acknowledging our part in it’s shortened existence, and although we are shockingly comfortable with this sort of discussion and awareness, we can’t face it when it comes to our own mortality, or even draw any meaningful connection between the two.

Instead we hold desperately to one of so many concocted stories that explain away our ultimate impermanence. We keep trust in stories fabricated in times of great ignorance and even greater fear, dragging them into the enlightened modern age and trying to adapt them to our ever growing sense of knowledge of both ourselves and our existence. In effect, we deny both the reality of our deaths and the reality of our existence, in a way, insulting the incredible value and inexpressible amazement that is the chance and circumstance of our lives.

But that’s not me. I want to embrace the awareness of my death just as I embrace the awareness of my life, and I want others to do it with me.

This isn’t to say we can’t be scared or saddened by our impermanence. Not at all. When I woke up in the ICU after getting the news from my doctor, I instantly thought of my son and had the awareness that my “annoying cancer” was now a “life-threatening cancer” and my time with him might be cut tragically short…and I was briefly scared, but that fear quickly turned into a great sadness more than anything else. And now…well…I can’t tell you what it is now.

Right now there is no need to take sides. I don’t PLAN on dying, but I never did really. I also know that I have little control over the outcome in this matter and that science and medicine and poison are really the ones doing all the work….I’m just here for the ride and hoping for the best. I can tell you this though. If the best case scenario becomes my fate, I’m going to continue living my life as I did in the past, raging through it and forcibly drawing out every epic experience I can create. And if the chemo DOESN’T work and my only option is accepting my quickened death….I’m going to do EXACTLY the same. Because if you ask me, a long life or a quickened death, I don’t know the point in existence if you aren’t raging through to either outcome.

And part of that experience, that existence, is honesty. It’s ok for us to talk bluntly about life and death, to not hide our desires behind delusions, and to simply accept everything for what it truly is. It’s plenty enough for me anyways. I hope your existence is, all the same, enough for you too. The life, the death, the chance, the circumstance, and everything else in between.

The Lethargy of Awareness

I know what fatigue is. I know the feeling that consumes me after a 20 mile run in the morning, where my legs tingle and muscles spasm and twitch, where a fog of sleep clouds my thoughts and a weight descends upon my eyes. It is undoubtedly a fatigue, but one marked by an equal sense of satisfaction.

I know what soreness is. I know the feeling of taxed muscles that strain against the need to rest and recover for the next run, that pull against each step forward and an abdomen that is shocked with discomfort in something as simple as a yawn or sneeze. It is a soreness, but one that converts into strength.

I know what frustration is. I know the feeling of wanting to get out and run, but remaining hindered by an injury or forced rest day, the desire to throw all good advice out the window as each runner that isn’t you goes casually trotting by. It is a frustration, but only a fleeting emotion that is immediately erased when the forced rest resolves itself the next day.

These are the, now laughable, considerations of distance running….very much unlike the same considerations related to cancer and the post-surgery experience.

I thought it would be good to get out of the house today, to see friends, to enter back into the real world for the first time since I entered the hospital on the 22nd. Where before I went into surgery I found myself highly reclusive, protecting myself from the misunderstanding of friends and strangers alike, I now thought it would be good to reconnect without the concern of surgery weighing down upon me, though admittedly harboring a new and more serious concern to come. Still, a bike-related event was going on downtown and instead of staying in bed all day while I actually had the opportunity to get out, I thought I’d show up and see if I would run into some friends for a much needed distraction.

I also thought I could use some coffee.

My dad drove me North to drop me off and I promptly fell asleep in the car, worn and fatigued from….well…I don’t know. Maybe a lack of food energy, maybe post-surgery issues, maybe too much sleep? I’m still trying to figure all this out.

I stepped out of the car, still consumed by a powerful weight of tiredness and fatigue….actually, lethargy more aptly describes it….a lethargy weighing down upon me, and I walked towards the event. I felt in a haze, taking precarious steps on the uneven bricks, trying not to shock my abdomen with too much force or rub my shirt against my still tender skin where the incision was made. I made my way inside the city market to find crowds of people waiting in line for various small restaurants, their voices echoing loudly throughout the cavernous building. I searched for a dedicated coffee stand, but didn’t last long in my search and decided to head outdoors into the relative quiet.

I immediately came upon a gourmet coffee truck, but unfortunately they were not yet open for business. As I walked away I ran into my first acquaintance and started up a short conversation, but no sooner than we said a few words, the coffee truck generator fired up and completely drowned out any attempt at an easy, normal volumed conversation with it’s offensively loud motor, filling the air with an abrasivness far beyond my tolerance zone. I cut our meeting short and left the area to find coffee elsewhere.

I started walking to the typical chain store up the street when I was met with a festival directly in front of the door, complete with bounce houses, music and the type of parenting that often frequents downtown carnival-like events. Mothers screamed at kids who seemed oblivious to their tone, probably well-adjusted to the normalization of their anger and heavy-handedness. I just couldn’t take it. I immediately did an about face and found myself walking back to where I came from, but continuing on to another shop up the street where I was sure I could get a simple cup of coffee without hassle.

On the way strangers smiled at me, trying to invoke a smile back, but I could muster nothing….and I felt bad about it. The discomfort in my belly dominated my emotions and I simply couldn’t reciprocate my usual demeanor.

I made it to the coffee shop, ordered a small coffee and sat at the window, staring blankly out the window as I counted down the time when I could take my next pain pills, knowing that might help me as well. I started sipping on the coffee, hoping my caffeine deprived body might respond well to the influx of false energy and I would be lifted from my lethargic state, but I struggled. I took out my Christopher Hitchens book and began to read, hoping to distract myself from the fatigue, the soreness and the frustration I couldn’t seem to shake, but after a handful of pages, I realized something deeper was going on.

I was a mess.

This wasn’t distance running fatigue. This was something deeper. There was no sense of satisfaction or accomplishment underlying my tiredness, but only a need to move about as little as possible. Even after a full cup of coffee I couldn’t shake the fatigue and imagined the relief I would get from laying down and closing my eyes, which unfortunately was not an option in this environment. Even after 19 days post-surgery, my body is still consumed by the trauma of the experience and I can’t bring myself to find value in movement, stay energetic or even find the will to carry on a conversation. I’m just spent, completely. All I want to do is lay down, in the face of needing to get as strong as possible for the upcoming chemo treatments.

This also wasn’t distance running soreness. As the hours ticked away and I counted down the time I had to take my next pain pills, I could already feel the overall sense of achyness and discomfort throughout my body. It’s a combination of the soreness you feel while laid out with the flu, coupled with the more pointed pain of muscle spasms that grab your weakened body and contract you into a temporary paralysis, topped with a skin sensitivity that makes just shifting positions an annoying procedure. I feel compelled to both wean myself off the pain pills and yet take them ceremoniously if only to keep me at a base level of functioning.

This isn’t distance running frustration. There is no definitive timeline of a forced rest day or an estimate of recovery from injury. This is indefinite. The recovery is indefinite. The return to running is indefinite. And the general confusion about what it means to heal from surgery is completely darkened by the variations in how each individual responds. I simply don’t know when I’m going to feel better. I WANT to see friends. I WANT to eat without restriction. I WANT to have conversations that aren’t mired by fatigue, negativity and the desire to simply be alone, away from the volume of the world, protected in a half-life of sorts.

This is not how I live. I value a life in exclamations. I value a life of movement and excitement, of losing sleep for the sake of experience, of depletion over surplus, so right now it doesn’t feel like I’m living my life at all. Im pulled from my previous desires against the confines of my new reality, and I’m going to struggle in figuring out how to balance them as I recover from this process. It’s going to take time, unfortunately….I know this…but with each passing day of passivity and lethargy, it feels like I lose. I don’t want to be that person who finds comfort by taking the easy way out, by simply staying in bed, but I CAN’T be the person that throws caution to the wind and enters the world only to find I’m not ready, not ready to deal with the noise, the desperate identities, and the overall insults of humanity.

Right now, I can only take solace in the awareness that although I can’t be out in the world just yet, and that although I’m feeling confined to the bed, I at least don’t WANT to be that person. At the very least, in NOT WANTING to be that person, I’ll be ready to get back to a life of exclamations when the rest of my physical and emotional self catches back up. I’ll have to hold that awareness close for the time being.

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And to my friends, I apologize for my lack of enthusiasm and frustrations that may have been directed at you lately. They are not intentional. I’m just having problems handling anything right now….whether they are conversations, texts, phone calls or anything that involves an unprepared effort on my part. Again, I apologize and I hope this passes soon. Thanks for being there regardless.