Tuesday, September 17, 2013

manufacturing an experience


"the truth is, everyone is going to hurt you. you've just got to find the ones worth suffering for." - bob marley


for as little as i find the time to write these days, i feel like silent bob, like everything that comes out of my mouth should be really fucking profound or, at the very least, really fucking pretentious. it's a lot of pressure until i realize that i've likely never said much of anything profound. that, and, to compensate, i am quite full of pretense, so we are just going to keep on keepin' on like this was my 12th post in the last 34 days.

this time last week i was coming off of 24 hours of not eating. this is not unusual for me on mondays into tuesdays. i've always had a tendency to eat lunch, go play softball, and call my water when i get home my dinner. it made me feel better about myself in terms of whatever filth i had ingested for lunch, and it made me feel like i could eat something equally gross awesome for lunch on tuesday. instead of finding something awesome to eat last tuesday, i found myself in a contemplative mood around noon-ish after i finished up my morning exercise routine. i thought to myself, "well, if i just wait 'til dinner to eat again, i'll have fasted for 30 hours. i'll have fasted for 30 hours and not even really struggled. i'll have fasted and not given it nearly the amount of thought and weight that i should have. what would happen if i did it for longer than 30 hours?"

and therein those couple of thoughts set into motion a chain of events that included, yes, making the decision to finish out the "30 hour famine", but also email a bunch of friends and try and recruit them to take a fasting challenge right along with me.

week one would be 30 hours.

week two would be 48.

week three would 60.

lastly, week four would be 72.

there would be no hard and fast rules. for me, i would and will just be drinking water. for others, who am i to set the terms to their sacrifice, you know? so, that's on them to decide. in the stead of eating, i would try to corral my feelings of hunger and direct them elsewhere, towards the places in this city and this country and this world that have hungry people. hungry people not by choice. not douche-bags like me. hungry people because they are fucking hungry. because they can't afford food. because they are homebound and cannot create their own meals. because they live in nasty, forgotten places where food is a luxury not to be shared with the least of these. i would think about these hungry people. maybe say a prayer for them. and i will see what i feel and see what comes out of my experience.

i've felt lost the last six or eight weeks in a lot of ways. i've felt aimless. directionless. a lack of motivation. a lack of drive. a sense of sour. a sense of anger. a sense of shame. a sense of power. a sense of hate. not all at once. not all the time. these feelings come and go and these feelings are fleeting, but i worry, more than anything else, is that i have lost something of myself.

during the chemo portion of my life, i felt everything. i couldn't take a step without being reminded of pain. i couldn't comfortably do much of anything. each day was a trial, to one degree or another, and i am certain, at this point today, that i became conditioned and connected to the trial. my pain and my trials delivered to me a goal. to get to the next day. to smile at the girls. to not be hateful because my perspective was constantly being reinvented and redesigned. i didn't love the pain. but i loved not allowing the pain and journey to defeat me. i was proud.

after the treatment ended and the medicine began to exit my body, normal came back in every sense of the word and my world. quickly the inconvenience of the chemo was replaced with more random issues, this time asthma type symptoms that have prevented me from renewing my running. it's all been quite the bother, but it's not cancer, and it's not chemo, so who the fuck cares?

i've been at a constant crossroads with the church and my church since the advent of this blog. today is no different. so, now what (again)?

i am now disconnected from many that were and had been constants in my life for a long, long time. i am trying to decide if the emotions regarding these disconnections are fearful or of relief. who do i just let go? who do i work to get back? what if i care more than they do? what if i just don't care? the feeling(s) is(are) probably mutual.

new opportunities are scheduled to begin in a few short weeks. am i excited or apathetic?

i'm not sure. probably both.

what a cop out.

i need to be shaken. i need to be stirred. but not all of those options include being in control.

and so, i made a choice to be in control.

to feel.

something.

i chose to be hungry.

what i am doing is not anything special. time will tell if what i am doing is actually anything spiritual. i don't need food for days anyway. neither do you. i just think i do. my body will tell me otherwise, and it'll be up to me to do something with that feeling. something positive. to make a minor difference.

i am proud of my friends for joining me during these hunger games, because they are likely doing it for much less selfish and much more righteous reasons than i. i will pray for them while we are hungry together, too.

i'm struggling to find a point in all of this melodrama.

yeah, me too. the point is this. there are many points.

feeling hungry isn't going to convince me there is or isn't a god or make me feel better that i will or won't have a good scan in november. feeling hungry won't likely open up my breathing passages nor will it hone my focus on the things outside of work and my family that seem so super-fucking cloudy at the moment.

but it will remind me that hunger is a god damn ridiculous problem that we continue to perpetuate through ignorance and our own over indulgence. we perpetuate the problem (just like most of our problems) by pointing the finger at the government or the president or someone that isn't us while we stuff our fatty fat faces with fatty fat cheeseburgers because america.

and as my ire rises, then what?

clarity? direction? purpose? intent? a hot dog?

we'll see.

the odds are always in our favor.

Tuesday, August 20, 2013

that escalated quickly


expectations are a false narrative, are they not? a bill of goods we sell to ourselves day after day after day after disappointing day. 

if there was one lesson moreso than any other during the year of chemo that i learned, it is that i was more of a danger to myself, every day of the week, than the chemo or the cancer ever was. reason being, every day, i would wake up with a different set of inappropriate expectations. 

"today is going to be better than yesterday."

"i will be able to walk without a limp. i just know it." 

"i won't see blood on the toilet paper." 

"chemo is just a word. if i tell myself i feel good, i'll feel good. i just have to want it." 

i was always wrong, to some degree. 

fuck. me. 

the same type of mindless behavior carries over into every day life, apply it to what you will. 

your favorite sports team. work. kids. relationships. the weather. any walk. every walk. it doesn't matter. 

we expect just above average, just above normal, just above what we've come to observe in the world, because we are conditioned to dream. to think big. to value what's beyond the status quo. to reach for the stars. 

and, sure, sometimes great things do happen. 

children are miraculously conceived, born, and live the first few years of their lives without their parents fucking up and dropping them off a balcony. 

you see a double-rainbow. 

a family member or friend values the context surrounding your world rather than rapid-fire judging you for the culmination of the context into an action. 

you fall asleep on interstate for that brief second because you've been up for way too many hours for way too many days and you don't kill yourself or a fellow human being. 

the big cats at the zoo aren't asleep. 

your favorite player doesn't do drugs. 

you don't get downsized. 

you get a second chance. 

the fries at mcdonald's aren't cold and end up being really fucking good. 

the water in the pool is a lot warmer than you prepared for it to be. 

the softball game isn't rained out. 

everyone shows up on time for your fantasy draft. 

you get a clean scan. 

your tail doesn't wag your dog. 

...

the facts are that these things set us up for bad days. they are good things. some are great things. some are exceptions to the rule. 

inevitably, we start to expect the exceptions rather than the rules.

and the rules are the rules because they are the rules. 

if i could just expect the rules, my life would be such a happier place. 

and so would yours. 

Tuesday, August 06, 2013

almost human


it's been two and a half months since the blog last breathed a live word. so much has happened. so little has actually happened.

the experience of attempting to document, in such a small way, my (hopefully) last (ever) cycle on chemo was draining. each of those days felt like a week. sitting down and trying to find enough light to make a joke about diarrhea or being chemo tired or aching all over or not tasting my food was cathartic in a way, but, at the same time, i wondered if i was making it too much fun, if that makes any sense.

had i been entirely truthful, i would and could have been much, much darker, but i suppose i made the editorial decision to not go that direction in the hopes that more of you and you and you would follow along. that more of you and you and you would, not necessarily sympathize with the plight, but gain a better understanding of what cancer can do to a person's body in general. i didn't want to be such a debbie downer that the experience of riding along with me would feel like a burden. and so, it was what it was.

my go to comment over the last month or so has been this. "i didn't know just how far away from normal i was until i actually felt normal again." and that's the god's honest truth. during the tail end of my breaks, i felt what i thought was close to normal. i could taste a little bit. i got a couple days worth of energy. i felt like being at work. i didn't hate everybody. i didn't hate myself. i wasn't wishing for a random bus to roll over my face. i felt almost human, and boy did i enjoy those days. i made sure to work out extra hard. to push my physical limits in as many ways as i could find, because i knew how difficult even getting up off the couch would be 10-14 days later.

nowadays, it's different. i have more energy during most of the day than i think it's fair for a normal person to have. not only can i taste, but i crave food. i want everything to be spicy. i look for reasons to walk around the store, to jump up and down. i sometimes go two full days without having to sit down on the toilet. and it is glorious.

i'm almost human again, which means many different things to many different people, including myself.

people don't ask me how i am anymore. i'm no longer on the prayer list. life has moved on. i'm old news. someone else you know has gotten sick. even worse, many people you and i have known have passed from this mortal place. the emphasis should be on them and the ones that will be affected next by tragedy, sickness, health, and other life shit.

it's still a weird feeling. not a lonely feeling. i was never very good nor did i feel comfortable with any attention my sickness brought. at the same time, i was bothered by others who i didn't feel like cared enough. it's fucked up, but it's how i felt.

i'm almost human now, as it relates to my health. in a random turn of events, i ended up with pneumonia for a couple weeks and now with an early diagnosis of adult-onset asthma. no biggie compared to cancer and chemo for sure, but both have delayed my motivation and ability to see if i am interested in running again. wheezing, being out of breath, not feeling like i can fully fill my lungs, people deal with that shit all the time, too. i'm not unique. it's still different for me.

it's time to get back in the blogging business, though.

there's so much to talk about.

Thursday, May 16, 2013

#0


i remember this scene from my childhood. i was in 5th or 6th grade and over at my dad's for one of my weekends with him. one of my favorite things to do as a kid was ride my bike on his street, pinebrook lane. the street was just killer. the lion's share of the houses lie in this valley. you have to travel down a huge (for a kid) hill to get down into the neighborhood, proper, and the street dead ends into a cul de sac that's up another great-sized hill for a bike. both were steep enough that a kid like me felt like it was a legit accomplishment if you could pedal your bike all the way up without having to hop off and walk the rest of the way up. as i and the other kids on the street got older, we learned how to weave back and forth up the hill, maximizing our momentum to climb our everests. countless times, i would get up to the top of pinebrook lane and rest for a second, then take off down the hill, wind in my hair. it was just the best. occasionally, i'd take my hands off the handlebars and glide down the straight hill with no worries about ever crashing.

until i crashed.

it was the worst bike wreck i ever had. everything was normal until i got to the key's house and i must have hit a rock or a hole that wobbled my front tire. by the time i realized i was losing control, it was too late. i over-corrected and took a hard left into the curb in front of the dearman's (our next door neighbor) yard. my front wheel hit the curb and stopped the bike, cold turkey. i flipped over the handlebars and by complete accident somersaulted forward and landed flush-flat on my back. all the of the air was forced out of my body on impact. through sheer luck, i didn't land on my helmetless head. (who wore helmets in the 80's anyway?). the air was forced out of my body and for a brief moment, i worried about death and dying. i think that was the first time i ever questioned my mortality.

it took a long time before i was comfortable enough to go no-hands again. i wasn't afraid of being hurt. i was afraid of something much more permanent. and i couldn't risk it.

i've brought those fears and that anxiety into adulthood with me. and they have multiplied exponentially with each of my two cancer episodes. while i realize in my head that i will at some point pass from this earth, i am still not ready.

not yet.

i brought those fears and that anxiety with me to kirklin clinic this morning. after i received the news of my clean scan, i couldn't completely lose them. not for good. i did put them back in my pocket for a bit, and i hope it'll be several months from now before i give them any thought.

death and dying is such a romantic topic to some. for me, it's a bummer, my life's biggest obstacle to overcome. not to not die, but to be okay with it. to welcome it. to find comfort in what comes next.

is there comfort in what comes next?

today, tonight, i will not worry about that. i'll think about not being on chemo and what that's going to feel like in a few days. i'll think about how many people have shared these last 28 days with me on this blog and on facebook. i'll think and wonder about the care and concern of others and what i ever did to deserve such encouragement from so many people. i'll think about the summer to come. i'll think about what it means to celebrate the end of something that i never wanted to spend a year doing. i'll think about the daily show and inside amy schumer and other mindless things. i'll think about star trek and my new phone and the tattoo that i'll soon burn into my skin to mark this, the longest year of my life.

i am happy for life. i am happy for a third lease on it. i am happy for my family and my closest friends for whom i would gladly take chemo for the rest of my life if it guaranteed they would never have to share the experience.

chemo, after all, is a helluva drug.

it makes you hurt. it makes you tired. it makes you sick. it makes you mad. it makes you sad. it makes you feel alone. it makes you poop your pants.

i am through with chemo, hopefully for a long long time. maybe ever.

i don't have any cancer in my body and hopefully won't for a long, long time. maybe ever.

i'm gonna let the blog breathe for a bit the next few days. go back and read over my chronicles. laugh all over again. cry some more. and then put it somewhere in the back of my mind for a bit.

because i don't want it anymore.

because fuck this cancer shit.

Wednesday, May 15, 2013

#1


i threw myself into work and resets and whatnot at the store today. i wanted to keep busy, not thinking about tomorrow. for the most part, it worked. i was barely in the office, which is a total rarity these days, and, regardless of how bad i felt or how tore up my stomach still is, i just kept on keeping on. the day flew by, and i was even late picking up the girls from the y and getting us all back to church for dinner.

then the rest of the evening began. the last four hours have felt like fifty. there was a big part of me that didn't want to show up in the gym this evening. i didn't want to have uncomfortable conversations with anyone that was trying to go out of their way to be nice, as terrible as that sounds. i didn't want to have uncomfortable conversations with people that were completely oblivious to what i am doing in the morning. i didn't really want to talk to anyone, save a handful of folks, but i went anyway, because going to dinner on wednesday night is what we do.

showing up late played to my advantage. most everyone there was already knee deep into their dinner and table talk. i walked in as harris was about to pray, and, to my delight, the first thing he and andy and i talked about was baseball. i could talk about baseball for hours! let's just stand right here and talk about nothing other than baseball!!!

i sat down with andy and the girls as the girls rubbed it in my face they could taste their milo's. my plain grilled chicken sandwich tasked like a watered down pair of shoes, but i needed something in my belly before i have to fast for the scan. i fed june two or three kernels of corn, one black-eyed pea, and the rest of the evening has just been a blur, a wall of noise and worry and anxiety and "OH MY GOD WHY IS THE ROOM SPINNING?!".

caroline talked non-stop about many things on the way home. i was listening to the end of the heat/bulls game. if i could've reached her tiny neck without running off interstate 59, i would have considered choking her out. instead, i just affirmed her every now and again with a "yep.", "sure", or a "yeah?" and we finally made it home.

and now, i'm here, on the couch, banging out this short post. everyone around me "feels good" about tomorrow.

i wish i felt the same.

#1

toxicities present:

none of it matters anymore. all that matters is the scan.

pain (scaled 1-10):

whatever.

Tuesday, May 14, 2013

#2


there's a thorn in the side of my emotions today. as you know, if you've been following along even ever so slightly, you know i'll swallow pill number 252 of 252 later tonight. tomorrow will hopefully be my last day "on" therapy for a long, long time, maybe ever if this treatment worked the way we all have hoped. and yet, there's still a very distinct disturbance in my force. not surprisingly, this has everything to do with my impending scan on thursday morning.

the plan will be similar to the scan in november. the biggest difference will be they are going to scan me neck to pelvis rather than abdomen to pelvis as they did six months ago. i'll go in and have my scan at 7:00 a.m. my six week follow-up with my oncologist is scheduled for two hours later, at 9:00. if the scan is read as quickly as it was six months ago, i should have the results during that appointment.

back in november, i really appreciated my doctor coming in and quickly saying, "everything looks fine." i am sure he's well aware from his vast experience that no one is going to listen to a word he says, much less be able to put together a conversation, if they are worried about the results of a scan. and so, he came in, gave me the good news, i took a deep breath and began the six month march into the second half of my treatment plan, which will culminate tonight and then thursday morning.

and so, we are here. so, what? i made it. i feel like i should feel a more immense sense of accomplishment, but i don't. i have to believe the reason for that is that i don't know if i truly have a reason to celebrate yet.

yes, of course i am happy to finish this, the longest year of my life. the pain, the discomfort, the physical and psychological anguish of these last twelve months because of the poison i've been voluntarily swallowing is coming to an end. as sarah mentioned last night, it'll really hit me two weeks from tomorrow night when it becomes reality again that i am not on a "break" anymore. i'm just done. period. there's something incredibly awesome and incredibly frightening about that thought. awesome, yes, in that i'll feel like myself for more than just one week. frightening, yes, in that i'll then move to worrying, "what if the medicine is all that's been standing in the way of this thing not coming back since this time last year?" even that hypothetical thought puts the cart before the horse, though, right? for that thought to make any irrational sense, i've got to have a clean scan first.

and so, i want to be so much more happy on this day than i am. i want to cry big, happy, tears of joy. i've worked so hard, endured so much to get to tonight. and instead of feeling good, i'm just worrying that something dreadful will show up thursday morning when they look inside me.

certainly, that's got to be normal. i know this. if you find something inside you like cancer once, you are never going to be able to totally let it go. i'm much better now than i was three years ago at the whole "get busy living" thing. but my fears, my anxieties, my paranoia have not been cured. they've just been masked by the short term peace of mind that a clean scan brings.

at this point, i'll take it. even in the short term. you can't put a dollar amount on how valuable peace of mind can be.

because at this point, the fear is paralyzing me on what should be my greatest day of 2013 so far.

fuck this cancer shit.

#2

toxicities present:

mainly just the stomach and the fatigue and the reflux and the chewed up hamburger meat today. i didn't poop my pants, though, so things are trending up.

pain (scaled 1-10):

5

Monday, May 13, 2013

#3


frequently asked questions:

"how are you feeling?" - numero uno. the most often asked, the most annoying, the most disturbing, and, more often than not, really, what is anybody supposed to ask someone on chemo anyway? there's no good way to answer it, because i don't really feel like most people want to know. unless my answer is "great. i'm feeling really, really great.", it's going to wear a brother down in, like, five seconds if i answer truthfully on most days. it's annoying only when i sense the question is insincere or ignorant. like i've gone on about here in the past, i've worked really hard with my diet and the workouts that i can still do to stay healthy and not fat and not weak and all of that. so, on the outside, other than my white facial hair and/or limping, you wouldn't know i'm on the medicine. that is, unless you've ever paid attention to the blog in the past year or ever talked to me in person or ever given thought to how difficult it is to talk about cancer or my situation or if you've given thought to how terrified i am of dying every single day. i'm being mean. and judgmental. i know some people ask the question of how i feel because they really want to know and really want me to feel better than the last time they asked. it's disturbing because it makes me think about how bad i feel and saying it out loud makes the cancer seem real and talking about is disturbing. but again, there are probably no good questions to ask me anyway, so i should just stop banging on this one.

 "how many more cycles/pills do you have?" - this one always makes me so mad. my first thought is, "christ, jackass, i put a picture up on facebook every month!" or "you've asked me this eighteen times!" but then i breathe for a second and remind myself that i am the only one going through this. no one owes me anything, much less to remember how many pills i have yet to take, and, again, people are likely just trying to be nice and act invested in me, even for just a second.

"how are the feet?" - again, first reactions first. first reaction is typically, "mother.fuck. i am using crutches and limping like i've broken something. but i haven't broken anything! they fucking hurt so bad they have redefined my definition of "hurt"." back off for a second. breathe. people just don't want my feet to hurt.

"how many pills do you have left?" - you just asked me that, bro. like, yesterday.

"when's your next scan?" - cue panic attack.

#3

toxicities present:

waterbabies. chewed up hamburger meat. while trying to relieve some of the gas pain i was experiencing after lunch today, some waterbabies slipped right out. i tightened the hatch up, surveyed the situation and enacted plan "no one can know about this". i ninja-d my way back to the bathroom without anyone suspecting anything. hand-washed and dried my pants as best i could with the materials i am afforded in the psp restroom. i came out and went about the rest of my day, no biggie. i've become such an expert at pooping my pants at this point, it's ridiculous. and sad.

chemo brain. most of the day, i couldn't remember my old best friend's middle name. this bothered me so badly that i almost cried. this may have nothing or everything to do with the chemo, but, since i have these types of moments more and more often recently, i'm gonna say they correlate. either that, or now i have a brain tumor.

reflux. chest tightness. nausea.

feet started to get sensitive again today. what my feet don't know is that i am almost done with chemo and they don't have time to get really bad again. so, fuck you, feet. i win this round.

pain (scaled 1-10):


7

Sunday, May 12, 2013

#4


etc...

a short list of still-annoying shit that hasn't made the cut to be mentioned on the blog yet.

- i've already mentioned how every orifice on my body dries out over the course of a cycle. this includes the nose. this one particular spot on the inside of my right nostril ends up scabbing up every motherscratching cycle and it is excruciating. other scabs have developed in and around both nostrils over the year, but this one pops up every time. so, between week 2 of each cycle until about a week after the cycle ends, there is a great chance you'll see me pushing against the side of my nose, contorting my face to try and stretch the scab open or flat out digging up in there trying to rip the scab out. it's incredibly painful to rib that scab out, but the 15-30 seconds after its removal are pure ecstasy.

- as i journeyed through puberty, i was really lucky with the whole acne thing, or lack thereof. i didn't suffer through months on top of months of pimples and oily face and other unsightly issues. now, that's not to say that chemo has led me to rue the day that i celebrated being luckier than some of my peers, but i've had these random rashes pop up on my forehead and my legs almost each cycle. on the top of my legs, there have been these small little pimples that hurt like mad. maybe it's my lack of experience, but these little fuckers will not pop for anything, and so i end up just doubling or tripling the size of the pain because i squeeze and squeeze and squeeze the little bumps 'til i can't even see the whitehead. oh well.

- i'm cold. all the time. for the last two or three weeks of each cycle, i can't get warm, and, during the cold weather months, i couldn't stand to be outside. i'm not really a layers kind of guy, but i did eventually go and buy a scarf. if you had any idea how much fun i made of amy and her scarfs, you would know it wasn't easy to become what i hate. to my surprise, i think i look pretty good in a scarf.

#4

toxicities present:

extreme reflux. i'm hoping the severity of the reflux these last three weeks is what's been leading to the tightness in my chest most days. if not, i'll have another problem to address soon.

my stomach is just a raunchy, gassy, crampy mess. waterbabies have been delivered four times today, each with an increasing velocity. i went wed.-fri. without eating dinner to try and avoid labor in the middle of the night. i'll probably pay for my mother's day dinner out with sarah and the girls in about five hours.

which brings us to the chewed up hamburger meat. i'm pretty sure the inside of the hatch is permanently on the outside now. and forever will be.

i spent the night with bhn at the church last night. the cute little 3 year-old in the next classroom was up and babbling 'til after 2. the fatigue is crippling today. i'm proud that i soldiered through church, a workout, and dinner. some days, you fight harder.

i bit the shit out of my tongue today. not chemo related, but, you know, injury to insult and whatnot.

pain (scaled 1-10):

7

Saturday, May 11, 2013

#5


o-ren: "you didn't think it was going to be that easy, did you?"
beatrix: "you know, for a second there, yeah, i kinda did."

the first few days of EVERY ONE of my nine cycles has been a case study of mismanaged expectations. for the first day or two, like my urologist guessed, it is actually almost like "taking an aspirin". my taste is still around from the end of the break. i have tons of energy. i feel good. my feet feel like running. the world feels like it is, again, my playground.

and during that relative peace time, my imagination gets the best of me. what if this one isn't going to be so bad. what if my feet don't kill me around day 10? what if the waterbabies come, but they don't come and destroy my insides like they did last cycle? what if my energy stays good and true and i don't feel 80 years old by week 3? my imagination plants the seed deep. before i know it, around day 3 or 4? inception. i believe my imagination. i feel confident that this one won't be as bad as that one.

and during EVERY ONE of my nine cycles, i am kicked the testicles by the steel-toed boot of what is real, of what is actually true. by the fact that chemo is a helluva drug.

chemo is designed to do damage. the hope is that it damages the cells the specific therapy targets, but other innocent, good cells are casualties of the war. and as your insides hurt, so do your outsides.

i'd like to believe that my mismanaged expectations are a good thing, a product of my hope in the better, in the hope that "this too shall pass", in the hope that i know i won't always feel this bad. on my worst days, though, i wish i had been more realistic in the beginning of every cycle so i wouldn't be so disappointed at the end.

#5

toxicities present:

all of them.

pain (scaled 1-10):

6

Friday, May 10, 2013

#6


what to say. what to say. was today any better? no, not really. was today any worse? i don't guess so. started off rough, with the angry stomach and the waterbabies and whatnot. thanks to hannah and her own angry stomach, we got a four a.m. wake up call that had me bright eyed and bushy-tailed way too early. i need sleep.

tomorrow begins what might be my last weekend on chemo. five pills left to swallow. seven or eight days left to feel my worst. my attention has started to turn towards thursday of next week and the scan.

what if something shows up? it shouldn't, right, but what if it does? then what?

i'm so nervous. i'm so scared. this time next week, either a great weight will have been lifted and i will truly have reason to celebrate or i will have to reconsider what i have in front of me, again.

#6

toxicities present:

all of them.

pain (scaled 1-10):

7

Thursday, May 09, 2013

#7


i had someone with experience tell me early on, "chemo takes you to your lowest place. then it takes you lower."

as i've said several times during this series, no one side effect, other than the feet, is something that all of us haven't experienced during our lives, maybe many times during our life. headaches. fatigue. diarrhea. muscle aches. random rashes. sores in our mouths. what's so dreadful about chemo, at least in my experience, is that all of these, by the end of a cycle, are piling up on each other, all happening at the same time. and during those last few days, nothing anyone can say can make it any better.

a few days out from the end of each cycle, someone will comment, "you're almost there." and they mean well. they do. but they have no idea. seconds feel like minutes. minutes feel like hours. hours feel like days. days feel like weeks. i realize all of that sounds very dramatic, and i would read it that way too if it wasn't exactly how i feel.

so, yeah, i feel pretty low this evening. alone. hurting. tired of being tired. and yeah, i only have six pills left to take.

but i have six pills left to take.

fuck. this. cancer. shit.

#7

toxicities present:

all of them.

pain (scaled 1-10):

7

Wednesday, May 08, 2013

#8


we've already established here in this series that everybody poops. we don't talk about it, because poop is gross. it happens. we know it. no biggie. we've also established that everybody craps their pants. we don't talk about it either, because we think it's even more gross (it's not) or uncommon (it's not) or unnatural (it's not). everybody poops. everybody has a splash of diarrhea from time to time and everybody accidentally poops their pants. welcome to the human race. it's part of the journey.

even though the frequency with which i've pooped my pants has increased drastically while on chemo, it's been directly proportional to how often i deliver the waterbabies. if all we ever had was waterbabies, we'd all be pooping our pants all the time, and it'd be no big deal whatsoever.

one of the most painful symptoms of this particular toxicity, though, i didn't properly prepare myself for. i don't often try and visualize what my rectum looks like, but, at this point, i can only imagine it looks like someone chewed up raw hamburger and spit it out. and then covered it with blood. at the end of the chewed up hamburger meat now grows every nerve ending in my body, naked and violently exposed to the delivery of the waterbabies over and over and over again. in and of itself, this would cause the hemorrhoids and it would also cause pain, because, let's face it. the human body isn't made to endure rip-roaring diarrhea five to six times a day, day after day after day, much less clean up after those experiences day after day after day. again, we've all had those dreadful diarrhea days, but they usually only last 12-24 hours and then our body heals itself. during the last three weeks of every one of my nine cycles, my chemo stomach does not allow for one of my most sensitive areas to heal. even the softest, most heavenly piece of toilet paper feels like prison toilet paper. no, fuck that. prison toilet paper would be the best. it all feels like sandpaper, and since every nerve ending in my body is now exposed outside of the chewed up hamburger meat, it hurts.

no, i didn't properly prepare myself for that type of pain. nor did i prepare to feel like i was always "open for business". part of the natural order of things when you are going number two is when you finish your business, you can tell. the hatch closes, and you know it's time to wipe, lysol, and exit the gas chamber. if you are delivering waterbabies five to six times a day, the hatch breaks, at least mine does/has. sitting on the toilet, i always have that sensation that there is more yet to come. after an arbitrary number of minutes, i just have to cut my losses and clean up the hamburger meat. the only thing i've found to be more sensitive than the outside of the hamburger meat is inside the hatch. sandpaper was never meant for that area.

the only lesson to be gleaned here? never eat. never feed the beast. and god help you if you ever have to clean the inside of the hatch.

#8

toxicities present:

holy crap, literally. non-stop waterbabies all day. imodium had no power to stop them.

stomach is so, so cramped and mad at me.

couldn't shake the fatigue mid-afternoon on.

chest and back have been tight all day. either i'm going to have a heart attack or throw up later tonight. i'm no doctor, but i'm pretty sure those are the only two options.

feet got a little better today.

pain (scaled 1-10):

based purely on my butt - 8

Tuesday, May 07, 2013

#9


i used to be super-afraid to throw up. i would do everything in my power to not throw up. breathing exercises. meditation. "there is no spoon." no one likes to throw up. i mean, i get it. it's not just me. it's such a helpless and fucked up feeling. this self-defense mechanism of the body where your insides literally turn themselves inside out to hurl something evil out of your system. the initial surge is usually surprising, but it's not the worst part. that initial surge is when the lion's share of the evil is purged and most of the contents of the stomach are puked into the toilet bowl. but, no, it's not the part that i was always terrified by. it's those next two to three to four heaves that finish off the violence. one of those last heaves always last just a liiiitle bit too long, right? you propel and expunge and push and garble and moan until your completely out of breath except the heave isn't finished. not just yet. it's goes further, for maybe just two or three more seconds until you reach the point where you feel like you are going to pass out or die. that is the scariest part. but the heave does stop, you can swallow a deep breath and live to throw up another day.

thursday a week ago, when i threw up four or five times in three hours, i had that death heave feeling every time, and something changed. after the second or third time, i looked forward to it. i had experienced it enough to know for a fact i would not die. i knew the death heave feeling was signaling the end of that respective episode. so, i owned that shit. pushed even harder than necessary. dared my brain to lose enough oxygen to black out. silently screamed a "fuck this cancer shit!" to myself and moved outside of my fear and back into reality.

reality told me i was really sick that day, but i would get better. i hope that experience plays as a metaphor for the bigger picture of this chemo experience in a couple weeks.

#9

toxicities present:

several premature deliveries of waterbabies today. that particular orifice is so damaged at this point that it would be too disturbing to describe here today. doesn't mean i won't do it tomorrow when it gets worse.

the mouth is so bad i've had to skip brushing my teeth a couple times over the last few days or just go with water to avoid the pain the toothpaste causes.

feet are improving slightly. if i get out of this cycle having already experienced the worst foot days, it will be better than in past cycles. that would be a surprise.

fatigue wasn't so bad today. usually not on off days. still nice.

muscle stiffness wasn't quite as bad today either. calm before the storm? we'll see.

pain (scaled 1-10):

4

Monday, May 06, 2013

#10


"the incident"

my memory tells me that it was sometime late june/early july. katie and i took off running from the house as we already had many times since moving into the trussville house on lake street. our normal route took us from the top of lake, down to a left on rockridge, right onto oak, crossing north chalkville and taking a left up to turning right onto pine. at the old junior high, we reach our first mile marker. we would hit the sidewalk and take a right on the sidewalk, heading down towards highway 11.

my stomach didn't feel "right" before we left the house, but that was often the case before a run. i don't know if it's anxiety or what, but it wasn't so uncommon that it frightened me away from running. many times, i'd start a run with a nervous stomach feeling, but it would fall away by the time i hit the first half-mile marker. not so much that day.

my stomach rumbled the entire first mile. at two or three different points, i had to struggle and concentrate really freaking hard to not let the hatch fly open. once we hit the old junior high, i started planning the pit stop. we would pass the park in about a half mile. i would duck in to the restroom there, take care of business, and we'd finish the run. as we approached the park, something changed, if only for a moment. i felt fine, good even. we jogged past the driveway to the park, i looked to the left, and i figured whatever was boiling inside of me was gone. i couldn't have been more wrong.

we got about a hundred yards past the park and the feeling hit me again. hard. i had to come up with a new plan, fast. the hatch was about to fly open. home was way too far away. i didn't think i could even turn and make it back to the park. construction was (and still is) happening right at highway 11 at veterans park. surely, surely there would be a port-a-potty there that i could dive into. at this point, i told katie something severe was about to happen and we were going to have to hit the pause button. she agreed she'd just run on to highway 11, finish the second mile, and then come back to meet me.

we got to the park. i was sweating a freezing sweat. my sphincter squeezed as tight as i possibly could, i turned into the park. looking around feverishly for the mobile toilet, there was not one to be found. plan b. on the fly. the first thing i came upon to hide behind was a bulldozer. like mark renton in trainspotting, it made no matter that this would serve as the worst toilet in trussville. what mattered is i didn't want to crap all over myself two miles away from home. i crouched behind the bulldozer, scraping my bare ass on one of its teeth on the way down and let nature run its course. it was the most freeing and terrifying feeling i had ever experienced. here i was, in the light of dusk, hid as best i could behind a bulldozer, shitting waterbabies all over the ground and my shoes. once i finished, i cleaned up with what i could find on the ground around me as best i could, and i came out from behind the bulldozer, probably as pale as a ghost.

katie knew something was amiss, but she wouldn't ask for details, thank god. i told her we needed to walk back, and i made her walk a step ahead of me the whole way, embarrassed that she would see or smell the evidence left on the back of my legs and my shoes. we made it to the house. i told her to not look back at me on the way to her car.

i walked in the house and sarah was in the kitchen. i stripped down in the laundry room, so humiliated, and asked her not to talk about it. not now. i walked naked through the house to the shower, to wash away the feces and the shame.

and that was my first experience with my chemo stomach that has stayed with me for the last ten months.

#10

toxicities present:

chemo stomach/waterbabies - how many times in your adult life have you crapped your pants? once? a couple? maybe three? before chemo, i could probably come up with a time or two. you think you are just passing some gas, and whoops, something comes with it. it sucks, and, again, it's shameful, but like the kids book that educates toddlers to the fact that "everybody poops", everybody also, at some point, craps their pants. if you deny this, you lie. since the chemo treatment began, and since the fateful day of the incident, two hands would not be enough to count how many times this has happened to me. i've gone from being crestfallen the first few times it happened to now, where i have lost any pride or potential for shame i once had. at this point, it's just, "uh-oh. crapped my pants again. gotta run home and change. it's not embarrassing anymore. it's just a minor inconvenience. and this is unfair and sad.

the feet feel about the same as yesterday. tender, not terrible.

my head has hurt all freaking day for some reason.

muscle stiffness. i pulled a bag off topstock this afternoon and was afraid my traps were ripping to the bone, which is to say it hurt.

reflux was pretty bad through lunch when i was finally able to refill my prescription. it's a little better now.

some nausea. not the worst ever.

death by a thousand cuts.

pain (scaled 1-10):

6

Sunday, May 05, 2013

#11


toxicities present:

wearing the dress shoes for eleven hours did damage to the bottom of my feet. yesterday, it was cute to say i was just being stubborn. not so cute today. i guess i deserve the anguish.

the reflux has been present today, but it's never gotten super-bad. just annoying.

while the muscle-stiffness is getting more severe, the silver lining is that i still seem to be able to work it out to some degree. i'm able to exercise as much as usual. that's helps my mood on tougher days.

oh, those waterbabies. more on those tomorrow.

pain (scaled 1-10):

7

goodnight, moon.

Saturday, May 04, 2013

#12


a sad day today as we remembered the wonderful life of euel mcelroy with many of his friends and family. to a person, the praise and memories and recollections were beautiful stories of a man whom, by all accounts, did nothing more than make every little piece of this world that he touched better.

he did the same with mine. euel and i never had much of an excuse to talk before my cancer recurred last year. he was one of the first at the church to come up to me, offer to listen, and be a piece of peace in my life that had been terribly disturbed for a second time. a couple times over the last year, he would come into limbo before we got started just to check on how i was. here was a guy that was in so much more pain than i, his circumstances so much more dire, but he was willing to be outside of himself to make sure i was doing okay.

i treasure that selfless attitude and i think of euel almost every day. for every day that i struggle, he was struggling more. for every day that i've felt sorry for myself, i never got the impression that he was.

and so, he's made me want to be strong for those around me. to be positive. to look good. to keep exercising. to not allow the chemo to derail my life entirely.

thank you, euel, for everything you gave me. your kindness, care, and concern never went unnoticed.

blowin' in the wind...

#12

toxicities present:

the dress shoes were probably a bad idea, but i'm stubborn. whatareyougonnado?

holy cow. my stomach. waterbabies being delivered here, there, and everywhere.

if i never wiped after a trip to the bathroom again, it would be too soon. it would also be disgusting not to, so i'll continue with the torture.

pain (scaled 1-10):

6

Friday, May 03, 2013

#13


i'm at the point in this story series where i am starting to worry that anyone that is following along with me is probably thinking, "okay, gee-zus, man. we get it. you're taking a little pill every night that gives you a little upset tummy and makes you bitch a lot about being tired. shut the fuck up, already." then again, i guess, if that's the case, maybe those people have just stopped clicking on the link by now.

i digress.

i've commented to this point (i think) that every cycles seems to have it's good days, it's bad days, and it's worst days. truth be told, this cycle has been a challenge. i could only count the first couple as "good". there have been two "worst" days (the throw-up day and the zoo day), but the rest, to some degree, can absolutely be categorized as "bad". i feel like i'm due some peaks to contrast the valleys, but maybe this is just a product of how long the medicine has been in my system at this point. it didn' take nearly as long to ramp back up in my system, ergo the side effects manifested more quickly and and are more stubborn to cycle through.

i was joking around monday night after watching the guys play softball about how bad i felt, and mark mc. half-jokingly said, "you should just stop." i thought about it for a half-second, too. surely, what's done is done. if it takes eleven more of these pills to keep this thing from coming back again, i fear it was going to come back again anyway. maybe that's not the right way to look at it. maybe that's not the point.

i suppose the point is we set out at the beginning of this thing to do a year. we knew the warnings. "treatment changes lives." it did. it has. it is. but i've done it. i'm going to do a full year, and i'm praying to the chemo gods that it was a year's worth of pain for the reward of many years ahead of me being cancer-free. i'm praying.

#13

toxicities present:

i went to lunch again, like an asshole, at rock 'n roll sushi thinking this time would be different. it wasn't. the initial taste of each bite was so, so delicious, but then my poor little mouth burned and burned and burned. i'm not going back til i'm well again. i don't want to create a block in my head towards rnr.

stomach has been super-messed up today. cramping. water babies. more cramping. more water babies. the works.

i am so tired. not sleepy tired. just soooo sluggish.

my feet aren't that bad today. still super tender in a couple spots on each foot, but i'm not dealing with any shooting pains or radiating up my calves pain.

is chemo brain a real thing? some say yes. some say give me a break. i haven't spent any time on cognitive impact of the medicine yet, because i'm not confident that i'm suffering from it to date on this cycle. today was the first day something felt off, though, not unlike other days i've experienced on other cycles. maybe more on this later.

death by a thousand cuts.

pain (scaled 1-10):

4.5

while eating: 7

brushing teeth: 9

Thursday, May 02, 2013

#14


fortuitous turn of events today in that the feet didn't respond to the zoo trip by even so much as calling me names. not only were they not worse, but they were a little less angry, so, wow. don't get me wrong, there was limping all day, and, if i stepped wrong on the wrong spots, i knew it, but, when i went to bed last night, i just knew this morning would be excruciating. it wasn't, and i am glad.

#14

toxicities present:

feet.

the open ulcer is going to cause some problems in a couple days i fear. it and the other mouth sensitivities are causing me to tear up when i brush my teeth, but drinking water today burned like i was swishing around hot fire. that's not supposed to happen.

muscle stiffness is starting to extend further down my back. by the time i finish this cycle, i'm going to feel like i look like pinocchio from that terrible show, once upon a time, the girls won't let us quit watching.

stomach was super crampy today, but no water babies as of 530. my lacerated rectum appreciates this.

did i mention the lacerated rectum? i did, didn't i?

fatigue was there but not so bad today.

reflux was a little bad after lunch but has died down some.

death by a thousand cuts.

pain:

5

godspeed, euel.


Wednesday, May 01, 2013

#15


caroline will never fully appreciate how uncomfortable i was during the field trip to the zoo today. after leveling out a little yesterday, my feet ramped up again last night and it was quite difficult to get into and endure standing in the shower this morning. with as much care and concern as i could, i cleaned off, dried off, put some clothes on, carefully placed two pairs of socks on each foot, strapped on my soft-bottomed new balance and stood up, ready to attack the day. having the cushion underneath me gave me reason to think i could make it through the whole trip, and i left the house.

all it took was the trip from the back door to the car to realize i was in for a long day. i got to the zoo, grabbed my cane that a co-worker had brought me a couple months ago, and made the decision, right then and there, that caroline would never know i was in pain.

i couldn't fully hide the limp and with all the ups and downs at the zoo, there wasn't any way for me to pretend when i stepped on a hot spot and reacted negatively, but caroline never asked me if i was okay, so i figured i was doing a good job of faking it for her.

we sat down for lunch, which was nice, but the break only made my feet more angry when it was time to head back in to the park. we stood in line for the train, took in the monkey house, traveled over to the reptiles, and, finally, our day was done. we sat down outside the park for a little bit and enjoyed some snacks and water together. i reveled being able to hear her interact and converse with her classmates as they retold each other about their favorite parts of the day. you don't see caroline open up like that much, and i felt fortunate to have seen it.

after the last class picture, i gave her a big hug, told her i loved her, and watched her get on the bus.

i limped over to the car, sat down, closed the door, and cried softly for about five minutes, finally allowing the pain and emotion of the day to exit my body.

caroline will never know (until she reads this) how hard today was. and i am proud of that.

fuck you, cancer. and fuck you, chemo.

#15

toxicities present:

the worst hand/foot day of the cycle so far. being up on them all day will likely mean tomorrow will be worse. it was worth it.

ulcer in my mouth opened up overnight. cottonmouth all the time. no taste. open ulcer. fuck.

fatigue was present today. i just had to ignore it. had more important things to do.

stomach cooperated at the zoo. it woke me up at 4:15 this morning, so i dosed myself on imodium before i left the house. that was a good move.

muscle stiffness in my shoulders and neck are bad today. real bad. pain radiating and causing a nagging headache to add to the list.

nausea and reflux, both are back today.

as you can probably tell by now, outside of the worst feet days, it's not any one thing that causes the most problems. it's everything happening all at once. death by a thousand cuts, if you will. with two weeks left to go, we still have several things that will flare up.

pain (scaled 1-10):

8

Tuesday, April 30, 2013

#16


after i take my pill tonight, i'll be halfway there. 14 down. 14 to go. i feel so bad and so tired today. not as much my feet. just one of those chemo days where i feel like i'm carrying all three of the girls around on my back for hours. i can't really shake it, but i hope going to hannah's soccer game in just a bit will motivate me out of the funk, at least for an hour or so. i'll fake it even if it doesn't.

#16

toxicities present:

the fatigue is the worst factor today.

the stiffness in my neck and shoulders got significantly worse overnight. it may not be a full week before i need some help getting my shirt off. i still haven't gotten any volunteers. be the first in line!

this ulcer in my mouth, man. it'll probably be open and oozing by tomorrow or friday at the latest.

the feet haven't gotten much better since yesterday. but they haven't really worsened either. i'm not going to do any backflips yet. the good news is i should be able to accompany caroline to the zoo tomorrow, no problems. and then the bad day will be friday. but it'll be worth it. she's super stoked.

 stomach woke me up early again this morning, but hasn't been much of an issue since. that's nice.

pain (scaled 1-10):

5

Monday, April 29, 2013

#17


on the day that my feet took the expected turn for the worse, it seems appropriate to draw the comparison between what i've been suffering with during eight of my nine cycles and what everyone tells me is neuropathy.

now, i've never suffered from neuropathy that i know of. not before my cancer treatments, and, understand, i am not a doctor. but, from what i've read, neuropathy is most often associated with a burning or tingling sensation, the closest equivalent i've heard described is like the feeling we all have endured when one of our extremities comes back to life after falling asleep.

this is not what i've struggled with and muddled through. beginning with our trip to the beach last summer, every cycle has included a several day stretch where certain spots on my feet have peeled, sometimes several layers at a time. this is common side effect of the sutent and many other slow release chemotherapies. most of the time, the heaviest peeling happens during the break, i assume as portions of the medicine are slowly but sure being released from my body through the capillaries in the bottom of my feet. about midway through the following cycle, as the medicine begins to release again, those areas that have peeled become little patches of hell on scorched earth. slowly intensifying in pain from slightly annoying to "shit, bro, i gotta limp" to "holy fuck, i'm going to have to crawl to the shower". at levels two and most especially three, it is not tingling or burning that i am experiencing. it is white hot death to the touch. at its worst, when i pull my foot off the ground, as the blood rushes to the most preciously affected areas, it feels like an invisible gnome with an invisible chain is pulling invisible swords from out of my feet because the invisible gnome needs his swords to slit my throat because OH MY FUCK THIS IS THE MOST INTENSE SHIT EVERRRRR!!! the family or friends or employees that have seen this happen know the expressions the pain forces onto my face and the rest of my body. the pain radiates in such a severe fashion that i've come close to faint on several occasions.

i try to elevate. moisturize. soak. take vitamin b supplements. none of it works. i've come to learn that all that helps is time and patience and not being up on them. that's it. that's the list. i truly appreciate all of the helpful suggestions, the care packages, and the "keep your chin ups" that i've gotten. they've all been so well-intentioned that it's just too heartbreaking to tell the givers that it's not worth it. you can't pretty up a pig with lipstick. and you can't fix my feet with udder cream. not when they are at their worst.

maybe someone will read this and say, "yes, dipshit. this is classic neuropathy." if they say that, fuck them. they probably wanted me to hurt for some reason anyway.

maybe someone else will read this and say that i'm a pussy. if they say that, fuck them. they have no idea. i'll fight them when i'm better.

maybe someone will read this and just think, "man, that sucks. i'm not going to tell him that i spent the most glorious day today walking with no pain." if they say that, that's what i've wanted all along. and i love you.

#17

toxicities present:

the feet thing, obviously.

after wishing for no mouth ulcers, i've got a couple forming below my bottom teeth, front of the mouth. fuck me.

i came home from work, planted myself on the porch and feel like i'm going to need a miracle or the threat of gunfire to move. this is the fatigue.

some muscle stiffness in my neck and shoulders that only started bothering me during cycle six has started. in about a week, i am going to need help taking off my shirt. any volunteers?

pain (scaled 1-10):

6.5

Sunday, April 28, 2013

#18


not every day on chemo is terrible. if it was, i would have found a way to quit. well, maybe not. i would have tried to talk my way into quitting.

the better days are like a good golf shot by a hack like me that never plays the game. that one good shot out of the 115 i may hit in a given round is enough to make me thing i could ever be good at golf. that one better than terrible day on chemo is enough to make me believe that tomorrow won't be terrible either. i'm experienced enough to know that i am fooling myself now.

i'm happy to go to bed fooling myself tonight.

toxicities present:

hobbled around pretty bad for a large portion of the day, but, after being off my feet for most of the evening, the pain is tolerable as i type this.

still can't taste. that part isn't going to change until late may. my only hope now is that ulcers don't form to make matters worse.

stomach was still pretty crampy today, but better than yesterday.

no significant reflux today.

fatigue is still hitting pretty hard around 3:00 every afternoon. but you think i'm a little bitch when i whine about fatigue. i just know it.

pain (scaled 1-10):

4

Saturday, April 27, 2013

#19


i had a solid poop today. my first since sunday. so, there's a highlight.

#19

toxicities present:

feet: my right foot seems to be trying to catch up with my left now. in the middle of my right foot, just beneath my toes, something is getting angry. both feet feel bruised at this point, like someone has spent several hours beating them with a ping-pong paddle.

mouth: goddamn my mouth, man. hannah picked zaxby's after her first soccer game for lunch and as i was getting ready to head to the store, i stole a fry from her, dipped it in ranch and ate it like i was always meant to. the ranch tasted like spoiled milk. hannah seemed fine with it, so i am guessing the ranch was fine. i'll steer clear from ranch from this point forward.

stomach: not as loose-y goose-y as the last five days, but i''m cramping like a motherfucker. probably more a product of my system being completely empty followed the reintroduction of food, but shit.

fatigue: still there. you still wouldn't know it. so, i won't bitch too much lest you think i'm a wanker.

reflux: my only meal today was chinese buffet carryout. this one is probably on me.

pain (scaled 1-10)

5.5

Friday, April 26, 2013

#20


"nothing would be more tiresome than eating and drinking if God had not made them a pleasure as well as a necessity."

voltaire had it right.

i mean, really. think of the act of eating. it's ridiculous. we sit down at a table. shove shit in our mouth. chew it. taste it. destroy that meat or vegetable or fruit into mush in our mouth. swallow the paste-y mish-mash down on our necks. we kill hours on end that we could be reading a book. working on the yard. watching television. playing with the kids. scrolling around on facebook or twitter and getting pissed at people that are "all about" that sweet baby jesus but only post shit about politicians that don't make the choices they agree with and hate on gay people. maybe i am being dramatic. but you get my point. eating, the act of eating is a big waste of time.

except, if we don't do it, we'll likely die.

that, and eating things we discover we like is fucking fantastic.

in the last couple of months, the new thing on facebook seems to be posting super-fucking close-ups of some dish or dessert and then have people slobber about how how great it looks. i'm fairly confident that if i took a super-fucking close-up of a 14 year old burger from mcdonald's it would look like an orgasm. so, really, just pull back the camera, remember that it's just food and go exercise. do a sit up. walk around the block. stop slobbering over food like it's the only thing in life you enjoy.

i'm jealous, really.

my mind still knows exactly what things are supposed to taste like. so, when my body tells me i'm hungry, things still sound good. and then i put them in my mouth. and then they are a watered down, cardboard-y metal tasting version of themselves.

tonight, i went to one of my favorite places on earth, rock 'n roll sushi. my sushi was barely alright, although the tiniest little spice in one of the rolls lit my mouth up like i was taking on the habanero challenge.

my mouth has fully turned now. nothing tastes right. my mouth burns at the silliest fucking sensations. it hurts to brush my teeth. to drink a coke. to chew a chip.

nothing about eating is fun.

so, if i call you fat in my head when you post that juicy picture of a fish taco or that oreo/quadruple chocolate/topped with liquid sex dessert dish tomorrow, it's not personal. it's not you. it's me.

i just want to taste my food again. and i won't be able to for another three weeks.

cry me a river, right?

again, in the grand scheme of things, it's no biggie. still sucks.

#20

toxicities present:

the mouth thing is getting bad. no ulcers. but it's getting bad.

laying down on my ass all day yesterday has stemmed the tide of flames that is the bottom of my feet. we'll see how they respond from being back up and about today tomorrow.

stomach. while i've been able to keep food down today, it's never great to sit down to go number two and it sounds like you're going number one. that and the cramping from having nothing in my system in pretty uncomfortable.

pain (scaled 1-10):

4

Thursday, April 25, 2013

#21


i woke up thirty minutes before my alarm was due to go off this morning, around 5:15. i had a knot in my chest that didn't feel normal. sarah asked what was wrong and i told her that i felt like i was going to die.

i got up, used the bathroom and laid back down. i stared at the ceiling dwelling on the pain in my chest. my alarm went off at 5:49. i got up, got in the shower. i helped caroline get ready for her boosterthon (which she totally scored at), and started to realize the pain in my chest was just a more intense feeling of nausea than i've been used to. i stared at the bathroom, and thought about sticking my finger down my throat, but i left and headed to the store hoping it all would pass.

i got to the store around 6:40, went to the bathroom, sat down on the toilet, pulled the trash can in front of me, and i threw up.

my co-manager called for other reasons as i was recovering from the first episode, and god bless her, she said she'd come in early to cover the store for me.

then i threw up again.

then i threw up again.

i was able to make it to the house, change out of my work clothes, laid down on the couch. then it hit me again.

then i threw up dry heaved again.

i continued to deliver water babies on and off the rest of the day, but the heaving stopped around 10:30.

so, how was your day?

fuck this cancer shit.

#21

toxicities present:

i've experienced annoying to intense nausea during every one of my nine cycles. today is only the second day, though, that i've thrown up for hours on end. to be honest, i don't know if the throwing up today was the  chemo, some virus, something food related, or some virus/something food related that bit me because of the chemo. irregardless, it happened. and it seems very unfair.

pain (scaled 1-10):

the pain scale. doing this for a week now has reminded me how difficult is it to answer the question, "how are you feeling?" like i was telling andy at church last night, everyone has experienced (minus maybe the feet) some of what i deal with as a result of the chemo at some point in their life. maybe many points. i try not to take that lightly, nor do i try to make my sufferings seem any more painful or paralyzing as what any typical person goes through on any typical day. we all have our shit that we have to deal with.

so, when i am asked how i am doing, i typically just say, "i'm doing fine." only to a couple/three people will i actually be honest, because, hell, relative to others that have it worse to me, i am, in fact, fine.

people understand pain, though. if my feet are making me limp, people can see that and they don't have to ask. hence, the pain scale.

today? my feet don't hurt because i've been laying down all day. my mouth isn't bothering me because i haven't eaten since 6:00 last evening (my own unsolicited 30 hour famine. does this count, andy?). my head hurts because i'm dehydrated, but i am not really in pain.

today sucked anyway.

Wednesday, April 24, 2013

#22


i feel shitty today.

my heel is hurting. i'll have more tomorrow on how my experience is different than neuropathy. my stomach has been messed up and the fatigue has hit hard today.

now the fatigue. how much of a pussy does it make a grown man sound like when he says that he's suffering from intense "fatigue"? a huge pussy. i get it. i hate saying it. but there's not a more appropriate word. here's the best way i can put it. we all have taken mid-afternoon naps and been shaken from it before the nap gets totally out of us, right? half-fog, half-paralyzed, half-your body feels like you're wearing a 50 lb. weight vest, all-pissed off. you just want to keep laying down, because you can't motivate yourself to even think of doing anything else. it's not even that you want to go back to sleep, because that doesn't seem like the cure for what ails you either. it's not that you're sleepy. it's just that your body isn't fully awake, and it doesn't want to be. that's the "fatigue" that i've been told by my oncologist is the most intense and consistent side effect of the sutent. when he first told me to look out for it, i shrugged it off. i thought to myself, most people on this drug are 30 years older than me. i'm young. relatively fit. i sleep okay. i'm not going to suffer from this very vague "fatigue" you're telling me about. as usual, i was wrong. i can wake up in the morning and feel completely refreshed. most of the morning i will feel equally spry. same through lunch. sometime mid-afternoon, it's like a switch goes off, and it's all i can do to get off the stool in the office. it doesn't happen every day, which is almost as equally frustrating, but when it does, like today, it hits hard and fast. and i'm ruined for most of the rest of the evening.

fuck this cancer shit.

#22

toxicities present:

the fatigue

the feet

the mouth continues to deteriorate

the stomach has delivered waterbabies thrice today

pain (scaled 1-10):

4

Tuesday, April 23, 2013

#23


there comes a point early in every cycle where i've whispered to myself, "maybe this one isn't going to be so bad". inevitably, the next day all hell breaks loose and i end my night crying myself to sleep.

today, it seems, would be that day. there's no use worrying about whether or not i am going to jinx myself. jinxes and reverse-jinxes only work in the world of sports. not in the world of chemo. this shit is poison. i know this now. as i hope it's re-educating bad cells (if there are any left) to not do bad things, it is introducing itself to the good cells, too, and wiping them out as well. the poison can't help itself. it does what it does. and it is doing its job. hopefully, the long-range benefits will far outweigh the short term inconveniences. if not, i am going to be one pissed off motherfucker. i'll also have cancer, and that will be worse.

today, i woke up and i felt pretty good. i had a normal bowel movement, which, if you've read the last couple of installments, is cause for celebration in and of itself. gross, but true. seriously, if you get anything out of reading these journals, you should totally not take it for granted when your poop is normal.

i had very little for brunch, so i don't anticipate the reflux being nearly the issue it was yesterday. watch me say that, and my heart will likely attempt to leap out of my mouth sometime during hannah's soccer practice.

my feet still have angry spots, for sure, and they will get worse as soon as they finish peeling, but they are in spots that i can dodge if i'm really thinking about how i am stepping. thinking about how you are stepping is a really funny thing. it's almost like thinking about trying to swallow. have you ever had an intensely sore throat before and tried really hard to direct food or spit down one side of your mouth so it doesn't feel like you have razorblades coating the inside of your neck only to realize that if you are thinking about swallowing, it's really fucking hard to swallow? i do that shit all the time. i'll try and think about swallowing and my whole body seizes up, and, all of a sudden, not only can't i swallow but i momentarily forget how to breathe too. i start to panic, my body instinctively takes over and i get past it all, but, in the moment, it terrifying. thinking about my gait works in similar fashion. in my head i try and keep count. step, ball, heel. step, ball, heel. step, ball, heel. then, some jackass employee (not really...they are just doing their job) will call me over the intercom and i fuck up and step on my angry heel first. my body reacts like omar from the wire just shot me in the kneecap and i've literally crumpled to the store floor like a folding chair. all because, once you are no longer a baby, you are not supposed to think about how to walk anymore. oh well, chemo problems.

as i sit out on my porch on this picture perfect tuesday afternoon banging out this entry, i can honestly say that i don't feel terrible.

that's a good thing.

#23

toxicities present:

a couple of the foot spots are turning a weird shade of purple, because that's what they do before they start to ramp up to the worst pain.

my mouth continues to dry out and i am starting to lose flavor. the inside of my lips burned last night when i was brushing my teeth. please no ulcers. please no ulcers.

hemorrhoids: i think i have two new ones. not severely painful just yet, but they are bleeding their little hearts out when they have a chance. thank god for clotting or i would have bled out in cycle three.

pain (scaled 1-10):

2

Monday, April 22, 2013

#24


chemo stomach, for me, is a funny and fickle beast. i woke up this morning and felt relatively normal. my left heel didn't start the day any worse than yesterday, so i was able to enjoy my shower. got caroline ready for her trip to children's theater, told everyone good-bye and made it to the store no problem. then between 6:45 and 7:30, i hurried to the bathroom to deliver waterbabies twice. between 8:30 and 9:30, i went two more times. i downed 75 2 imodium to stem the tide and things started to regulate. by 11:00, i felt frisky enough try some chinese buffet carryout for lunch and, what do you know, i didn't have to do anything more than number one until later in the afternoon!

the moral of this story and every day minus the very worst ones is that at some point a human's stomach says, "okay. okay. gee-zus. enough is enough." and takes a break. the very worst ones i'll explain in more detail when they happen in a week or so, but, for today, enjoy that one relaxing trip to the loo if you're lucky enough to only have one, because it could be waterbabies all day and all night if you're unlucky or on chemo.

#24

toxicities present:

chemo stomach. this is a terribly vague descriptor of what is actually happening inside me. outside of the violent delivery of those oh-so-premature waterbabies, i imagine i have a much better understanding of the cramping that goes along with the female menstrual cycle thanks to my treatment. sometimes, things lock up in my midsection in a way that just buckles me. other times, it's more a constant muscle tightness that i can't stretch out even though it feels like if i could stretch just a liiiittle farther one way or another, i'd experience some relief.

today, the reflux and the nausea were intense for a few hours this afternoon. i told those symptoms to fuck off and i exercised anyway.

the feet are still a few days away from the their worst, but i am trying to avoid putting too much pressure on the left heel as much as i can.

my mouth starting drying out this afternoon. 24-48 hours from now, my taste buds will change, and nothing will taste right for through 7-10 days after i come off the medicine again. the severity of the mouth ulcers and sensitivity has been all over the map from cycle to cycle. we'll see what happens.

pain (scaled 1-10):

feet - 3
stomach related - 5

Sunday, April 21, 2013

#25


a calm before the storm kind of day.

toxicities present:

i woke up this morning and the left heel felt worse than it did yesterday. i limped around this morning on the ball of that foot, but, thankfully, it didn't get worse through the day.

last night after i had posted #26, the first wind of uncomfortable reflux hit me at the store and continued 'til i was able to fall asleep. i take prescription zantac every evening along with the chemo to prevent the reflux overnight, but i may have to start taking one during day, too. my motus operandi throughout the whole treatment program has been "the less in addition to the chemo the better", but some of that stubbornness has probably led to more discomfort than necessary. i don't know that i'll mess with the program too much, but feeling like my heart is making its way up my throat is...unpleasant. if i can prevent that feeling, i probably should.

stomach started off unruly this morning, but waned as the day progressed. that was nice.

for the first time this cycle, i felt the wave of fatigue hit me around 3:00 this afternoon. felt like i was wearing a weighted vest most of the afternoon and felt like i was shaking off a nap for the same amount of time. not terribly inhibiting, but it's usually a harbinger or worse things to come.

pain (scaled 1-10):

3. inching up. inching up.

Saturday, April 20, 2013

#26



http://www.cancer.net/all-about-cancer/treating-cancer/managing-side-effects/hand-foot-syndrome-or-palmar-plantar-erythrodysesthesia

the above link, which isn't really that interesting if you're not on chemo, does a nice job of detailing one of my more serious and consistent side effects, my hand/foot syndrome.

this morning after I got out of the shower, i took and posted a couple of nasty pictures on facebook of the bottoms of my two feet. if you were unlucky enough to see them, you were probably all like, "what the fuck is this on my feed?", but i needed to put them there to document what i hope is the last time i'll have to deal with this shit.

if you saw the pictures, you'll notice that the left foot, specifically the heel, is waiting to give me the most trouble in the next couple of days. this morning, i woke up and could feel the sensitivity coming. i had to be careful walking around the house with only socks on. if i stepped too flush on the hardwood or the sculpted carpet, it would have sent a sharp, shooting pain up my left leg.

when i've worked out over the last nine months, i've had to stand on a folded up, soft blanket while doing my curls and my military presses so that i have a few inches between the bottoms of my feet and the ground. i can still feel anywhere from a dull sting to a piercing pain while i'm exercising, but i've been too stubborn to completely give it up. everyone that reads this blog knows how fat-phobic i am. my feet have kept me from running for almost ten months now. i've absolutely refused to stop doing what i can to burn a calorie here and there and stay in some semblance of shape.

my feet are going to get worse over the next several days. i hope that they cycle in a similar fashion as they have in the last couple months, where i'll only have two or three days where walking is nearly impossible, and then they ease up a little for me.

#26

toxicities present:

i've mentioned and showed you the feet on facebook. today was the beginning of the bad. my stomach is slowly turning into a boiling cauldron of hate. as soon as food hits the bottom, it is mixed up and spit through in haste, teasing me on its way out to think that i ever had any chance for part of it to stick to my bones.

pain (scaled 1-10):

2.5 - i am still fine with shoes on. and when i'm not in the bathroom. i can tell i am on chemo again.

and chemo is a helluva drug.

Friday, April 19, 2013

#27


i'd say the waiting for the worst of the toxicities is the hardest part, but that's not really true. the waiting sucks, for sure, but i'd rather wait and be anxious than be in pain.

the part of the waiting that is harder now than in the beginning of the treatment program is that i know there is a pot of agony waiting for me over the rainbow.

"it may end up being just like taking an aspirin."

there are several things that my urologist has said since july of 2009 that he'd probably take back if he had the chance now. during the first couple of cycles, though, i trusted these words that he shared with me during my last office visit with him before i got shuffled off and referred down to my oncologist at uab. in my head, it kind of made sense. i was "just taking a pill". surely it wouldn't be as bad as all the horror stories i had heard about infusion and/or radiation, right? the pill would be more slow-release. my body would have time to readjust and recalibrate as the levels of poison rose in my body. my insides would allow the sutent to kill the bad stuff and leave the rest of my body alone.

god, i had no idea what i was talking about.

nowadays, i know what is coming. it's a matter of when and not if.

#27

toxicities present:

not much yet. a few spots on the bottom of my feet started getting just a tad sensitive this afternoon. several spots on both feet peeled significantly over the break. when the pain comes, it's going to be bad. not today, though, so that's nice.

so long, solid stools! the quickest normal to change over to abnormal is always my stomach. i haven't started delivering water-babies every time i'm in the bathroom yet, but it's coming in the next 48 hours. we're right on schedule.

pain (scaled 1-10):

1 - i'm okay today.

Thursday, April 18, 2013

#28
(a running diary of my (hopefully) last 28 days of chemo)


tuesday, i previewed this next running series of the blog. over the next 28 days, i'll give you and you and you a running look into the life of kevin o'kelley, chemo patient.

as a disclaimer, when the days get bad, the language will probably follow and some of the imagery will likely be graphic and unsettling, but, for me, it seems appropriate to track what i hope will be the last arduous month of this pain-staking year long treatment program with honest and clear language. it also wouldn't really be very kevin o'kelley to govern the experience by making it easier to swallow.

the fact of the matter is that nothing, not a single thing, about having cancer and trying to rid oneself of it is easy. even the good days are some degree of terrible. even on the good days you wonder and worry if the poison inside your body is doing what the doctors intend, because, of course, there is a chance that it isn't.

i've said it before and i'll say it again. i'm one of the lucky ones...so far. i'm down one kidney. that's true. i'm down a year of exercise that didn't live up to my new standards set after i started running. i've spent a lot of money on a lot of food that i couldn't really taste or that ended up hurting my poor, little, sensitive mouth. but, i am not (that i know of) in the end stages of any of this. i am fighting for a new beginning. not a cruel and tortured end.

having said all of that, i'll try and capture over these next 28 days what kind of personal hell on earth my last year has been. some of that hell has been a product of the medicine and the toxicities i've had to suffer through and deal with. some of that hell is a little more complicated. the physical stuff has radiated into my psychological well-being, and those closest to me have been forced to suffer, on their own levels, right along with me. how they haven't all left me yet is beyond me. for i have felt like quite the loathsome character at times.

#28

toxicities present:

none yet. it will take 3-5 days of treatment before i start feeling the effects in a significant way. slowly, though, my body will stand up and realize that the shitstorm is brewing again. i'll start to feel tired in the late afternoon first. then, i'll know it's coming.

pain level (out of 10):

1 - i am okay today

lingering around from the last cycle:

hemorrhoids and some light rectal bleeding. when i first started the treatment, it totally freaked me out when there was some bright red blood on the toilet paper. i was sure it portended some type of doom. at this point in the process, it is way more likely that i will see blood than i won't. if i don't, i worry i didn't do something right or strain hard enough. go figure.

Tuesday, April 16, 2013

28 days later


i'm kind of scared, when it comes right down to it.

today is the last day of my last break...i hope. the hardest part of all of the next 28 days will be owning that it could be the last part of my physical battle with cancer.

i went to the oncologist a couple weeks ago, and we set up my next scan for may 16th. that will be two days removed from my taking the last pill of this yearlong treatment cycle i've been struggling through over the last twelve months.

can you believe it? i can't. 12 months of pain, fatigue, sickness, and emotional turmoil, projected onto those closest to me because either they lived in the same house as me or i felt like they wouldn't turn their back on me if i complained to them every time i saw them or talked to them. (thank you sarah, hannah, caroline, june, katie, and amy.)

and it's almost over...i hope.

i was talking to matt and stephanie after limbo sunday, and i said out loud to them something that i don't know if i've said to anyone yet about this process.

i'm scared.

of the end.

in spite of the pain, fatigue, sickness, and emotional turmoil, i've been telling myself since the clean scan in november that all of the inconvenience has been worth it. if the clean scan in november proved nothing else to me, it proved that maybe the medicine was working. nothing else was growing inside of me. at least, it hadn't been since the pet scan on april 1st.

so, what happens after i finish the medicine?

does it come back then? is that how it works? in my head, i know that's not the way it's intended to work, but i've convinced myself of far sillier worries in the past.

what if the medicine hasn't "re-educated" all the sleeper cells bent on destroying my body. what if those little devils are just waiting to make their move after the poison gradually makes its way out of my system?

what if something starts growing inside of me early june-ish and i don't find out about it until november? what if it grows faster this time around and spreads to every part of me just to prove it can?

even worse, WHAT IF THE MAY 16TH SCAN ISN'T CLEAN???

fuck. fuck. fuck.

then what?

then what?

then what?

then i die?

at 37?

fear. irrationalities. the unknown. these are the things that have always haunted me.

pre-cancer. during cancer. post cancer.

reset button.

do it all again.

i'm scared.

still.

but less so than i used to be.

beginning thursday, i will document here every day of what i hope will be my last cycle on the chemotherapy drug called sutent.

how am i feeling? what is it doing to my body? what are the worst toxicities? how is it changing me on the inside and out?

you are welcome to take this journey with me. and you are welcome to stay away. it will likely become very boring and very rote very quickly. irregardless, it's something that i feel like i need to do.

for me.

for the girls. for their future.

i am scared.

but less so than i used to be.

Tuesday, March 26, 2013

picture of health
(part anniversary)





i'm not sure how i let march 22nd slide by without formally taking notice.

what does it say about my journey that i had forgotten it was one year ago on that day i had my recurrent cancer forcibly (but happily) removed from my body.

the "bullet" holes above have faded. the memory must have, too, right?

maybe. the last year has been such a different experience, on the whole, than the year that followed july 23rd, 2009. that year, i had been told to "celebrate". the original tumor was contained inside my now gone kidney, and i should have a champion's chance to never have to worry about cancer again. at least, kidney cancer. i had a hard time owning the news, though. something didn't feel right. what about the chemo? the radiation? the surgery wasn't "easy", but it seemed like i hadn't paid enough to the cancer gods to be rightly healed and moving forward with my life. it was psychological warfare. every day and every night was a different paranoia. a different lump here. a knot there. a blurred vision or something akin messing with my mind, convincing me that all was not right. i did that dance with the man in the mirror over and over and over and over, for months on end.

about the time i was starting to feel comfortable in my own skin again, well, if you know me, you know what went down.

march 22nd, 2012, they shaved me down again. they put me to sleep. and with the help of a skilled robot, my urologist cut into me again. this time, my journey to healing and peace would require more. i haven't been able to spend nearly as much time being scared over the last year, because most of those 365 days i've been sick or in pain or super tired or some combination of all because of my chemotherapy.

the unfairness of it all has been replaced with getting to the next day, trying to feel a little better, efforting to feel a little less sorry for myself, to make weak attempts at being a husband or a father or a friend.

i am reminded all the time of how lonely this journey has become. through no one's fault (everyone has their own life and their own pain to deal with), i don't hear from many folks anymore asking me how i am. more than likely, they are probably just giving me space. more than likely, they need to focus on their own lives. i tell the same people multiple times how many months i have left to go, how many pills there are still left to take. it bothers me for half a second. i've told you this three times, man. in the latter half of the second, though, i remind myself that they have no reason to remember my timetable. they aren't counting the days, marking off weeks on a calendar attached to their fridge. they are just living their own life.

while i live mine.

if the november clean scan was really clean, i'm a year removed from having active cancer in my body. four years away from being considered "cured". it may not be anything to celebrate, but it's something to note here, in this place.

the "bullet" holes have faded.

have i?



#35
(#ftcs)


dear diary,

i'm hurting today. have been for about a week now. two weeks in to the last couple of cycles, the muscles in my neck and shoulder area have started to revolt against me. i thought i must have slept in a poor position or something. not until i reached my break and everything went back to normal did i realize that it was another fucking symptom of the medicine poisoning my body.

it's worse this time around. the neck and shoulder areas are equally as bad as they were a month ago. taking off my shirt kills. if and when i work out, the muscle feels like it is trying to rip away from my bones. but now the stiffness and pain is climbing down my back and into my legs. as sad as it is, it was really kind of hard to get out of bed this morning.

but, i climbed out of bed this morning.

i got up, because, what the fuck else am i going to do? just lay around all day?

no.

in other news, unless something unexpected pops up on my may scan, i've only got 35 pills left to take.

so, fuck this pain.

and fuck this cancer shit.

Thursday, March 14, 2013

better know a (current) humc staff member
(interview with andy)
((part three))


read part one here.
read part two here.


continuing...


Let's tackle this topic of relevance. For the last several years, I've worried that HUMC has lost its place in the community, therefore being on the cusp of becoming irrelevant.

Last week, though, I got some interesting feedback on a question I asked to Facebook. I am interested in the idea of adopting a church planters perspective in our church, and one of the comments I got in a conversation on that topic suggested to abandon the pursuit of relevance. Now, I realize they and I may have been thinking in different terms, but religious thinker, Mircea Eliade, suggests people are looking for more of the sacred to contrast the profanity of daily life. I am not sure I agree with that, either.

Either way, how do you define relevance, and what role do you see the church filling in a person's life?
 
 
----------
 
 
I think this is a very interesting conversation to have, that of relevance. I don't think there is a question that the church must be relevant. Irrelevance equals death, at least eventually. But the conversation to be had us what, exactly, is meant by the word. In speaking if the church, I don't think relevance has anything to do with worship styles, or music, or the perceived hipness of a pastor. Many contemporary churches are irrelevant, and many liturgical churches are relevant. (The other interesting question is the one you brought up regarding a sacred contrast to the profane we see in the rest of our life. I'm not all in on that idea, but on some level I think there may be something to it. But, I digress...)

What I mean when I say the word relevant is the churches ability to speak into the real life mess of someone's life. The ability of the church to help someone manage the joys and sorrows that are inevitable in life. To pitch a tent, so to speak, squarely in the middle of where people actually live and move and breathe, and provide hope and direction and relationships that help people live into the kingdom that God is building. Clearly, this doesn't have much, if anything, to do with the style of worship.

So with that said, I think the church's role in a persons life is to provide the community and the context for living a life of faith. That's a pretty big idea to unpack, and I don't know that this would even be the space to unpack it, but I do think that when the church gives you the relationships and the meaning and guidance to live with the kingdom of God as your focus, it is being incredibly relevant.
 
 
----------
 
 
In your experience, how often has a church been helpful in the context of living out your faith journey versus how often it has hindered that process?
 
 
----------
 
 
to be honest, more often than not, the church has not been helpful to me personally in living out my faith. i wouldn't say it has always hindered me, but it certainly has not given me the freedom to question or the direction in how to live in the tension of faith and doubt. to be fair, this has a lot to do with the role i have been in at nearly every church i have been a part of. a staff minister is supposed to have arrived, and be sure and confident (at least that is how it is made to seem). i am not there yet, so the tension is there.
for me, there have always been people who have been helpful to me in the process. more of my issues have been worked out over ribs with the editor of this blog than anywhere else. for that, i am grateful. but i do dream of the day when the local church is this community for me, and everyone else there.
 
 
----------
 
 
I resemble your comments about staff persons not being allowed to continue developing. More often than not, that scares the crap out of me. For, if you ever convey that you have "arrived", you've decided that you have figured it all out and can sense God in a way others can't.

You and I share so many of the same frustrations with the local and global church, and, yet, we keep coming back for more. In fact you continue to believe in being on staff. Do you consider yourself a masochist, old-fashioned, or is it something else that brings you back in time and time again?
 
 
----------
 
 
I definitely considered the masochist angle. For me, though, I guess it just comes down to the fact that I still believe that the church, local and global, can be what it was intended to be. Certainly there is a long way to go, but it is ground that can be covered.

I also can't stress enough how necessary it was for me to step away for a few years. Not only did it recharge the batteries, so to speak, it gave me a different perspective. In ministry, it is very easy to think that the world that exists is the one where you get paid to pontificate on religion and always be at church. Working a regular job gave me the chance to have the same struggles and issues as any given congregant may have. And that is invaluable. And where five years ago I considered my career to be youth pastor, now I don't think of it in those terms. Don't get me wrong, I am very proud to call myself the Director of Youth Ministries at HUMC, but if it is the last time I hold this position, I am ok with that, too.

I guess if I could boil it all down to one thing, though, it would be the people. Churches good and bad, big and small, are filled with good people who are sincere in their faith. And I very much enjoy the chance to work and live my faith alongside them. (And it definitely doesn't hurt that HUMC was full of friends before I came in staff).
 
 
----------
 
 
This sounds like an appropriate place to stop for now. Thanks for taking some time out of your last few days to give us some insight into your worldview. Your thoughtful and reasonable responses should be quite enlightening for my readers that only know you by your name.

Thanks, brother!