#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

#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

#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

#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

#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

#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.

#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

#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

#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

#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.

#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.

#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.

#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.

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.

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.

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! 

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


catch up with part one here.


continuing...


That all sounds pretty fascinating. Are there any pitfalls that you can foresee with trying to incorporate that new way of thinking into your ministry?


----------

There are certainly pitfalls that could arise with this, or any, paradigm change. But I don't think they are any worse or more numerous than the ones we may face if we choose not to engage. Just different.

The initial one that I think most people would see is that the change in authority might lead to some pretty aberrant ideas. That is, I guess, possible, but the guardrails in place are the leadership (person or people) and, quite honestly, the community itself. Bad ideas, I believe, would be called out and shot down much quicker. The challenge in that is making sure that happens with a spirit of love and grace.

The biggest pitfall I see is that it could become too easy to only engage in the online side of things, which could lead to superficiality. For that reason, the efforts in "real life" must be that much more fervent. Both must exist in concert.

----------

We've seen this type of thing play out in the national political scene. If someone disagrees with the President, no one is afraid to blow up the social media forum of choice with their disapproval. How willing or open do you see pastors, in general, as being to the day where every person in their congregation has a Twitter account and are willing to use it for the greater good of the community of faith?

----------

That's a fair enough question. My best guess is that a lot of pastors would be leery of this if they were honest. Many pastors (not all) get quite concerned with maintaining peace in their congregation (and a modicum of popularity from the congregation) at the expense of innovation. I don't say this cynically, just as an observation. It's easy to choose the path of least resistance when your success and livelihood are tied to keeping certain people happy. I have experienced this first hand under a pastor at a smallish baptist church who failed to do the right thing and risk angering some members. The result was a very plugged in family leaving, but I heard the pastor say that that was acceptable because if he stood with them (which would have been the morally right thing to do) he could have lost more. It's a shame this happens, really.

I'm not saying that pastors shouldn't exercise discernment when it comes to what they say or what stand they take. But it can become easy to lose your prophetic voice when you become overly concerned with keeping the flock happy. One of the reasons I stepped away for a few years from vocational ministry was I felt pressured to conform to certain expectations that I didn't believe in. Spiritually, it was suffocating me. I have had to commit to myself that I won't let it happen again.

As far as what can be done about this, I don't know that there is a simple answer. I do think that the reason it's so easy for the haters to jump on the President or other public figure is that they don't really see them as people, just a human representation of a cause they are either for or against. It's much harder to publicly disapprove of someone when you see them twice a week. I do think it would require a lot of courage from a pastor to let go in a sense and be ok with an increased voice from congregants. And a great degree of integrity, so that any attacks that threaten to become personal are met with trust in the kind of person they are. And a good support network that can speak truth to him or her when any controversy may threaten to overwhelm.

----------

Choosing the path of least resistance doesn't sound very revolutionary, does it? No wonder the church, corporate, is in such a quagmire. It's this blog's opinion that being "all things to all people" has taken Paul's original sentiment and perverted it into oblivion. 

Given the restrictions you identify, how do you find yourself working within those constructs to maintain a feeling a being spiritually fulfilled and making tangible impact in your ministry of choice? 

----------

to be clear, the path of least resistance is not an option. it only serves to prolong the careers of the ones who choose the path, and the descent into irrelevance of the church corporate, and local. maybe that sounds harsh, but i don't think we can afford to think like that. and i agree with the blog's assessment that Paul's original intent has probably been perverted. either way, i would rather take my cues from Jesus, and i'm not sure his sentiment was always the same as Paul's

personally, as far as finding the balance in working within any restrictions that are directly or indirectly placed upon me, and its effect on my personal spirituality and ministry of choice, i have had to identify a couple of foundations. first, i have to remember that my voice and viewpoint has value. the church doesn't need a chorus of voices in unison who say and do things all the same. i have sort of accepted that i am somewhat of an outlier. i don't always know where i fit, but i believe that the umbrella of the kingdom of God is large enough to include me, even when the umbrella of a local church may not be. i do believe that huffman is a community in which my viewpoint will be heard and considered and respected. so far, it has certainly been that.

perhaps most importantly, i have moved to the point where i would much rather stand up for people rather than causes. much of the time, one's faith is declared strong if they are willing to stand up for a cause. too often, this is at the expense for standing up for people. Jesus never equated your love for God with your willingness to stand against gay marriage or only vote republican. he did equate it, quite directly, with how you love people. the best, most recent example of this that played out on a national stage was the brouhaha about chick-fil-a and their support of anti-gay groups. it suddenly became a "christian" thing to do to eat a chicken sandwich to show some sort of solidarity with God. meanwhile, many gay and lesbian people (who God loves by the way) felt very unloved by Christians. and that is tragic.

within these ideas i have identified, i try to teach and lead from a place of honesty and sincerity. i don't necessarily think sharing all my doubts and struggles is beneficial to the students i am entrusted with, but i do think it is important that they know that i have struggles. if i don't know the answer to a question or issue, i won't act like i do, just to wrap a nice theological bow on the issue. many times, i just defer to what i believe is the most fundamental thing we have, which is God loves us, pursues relationship with us, and calls us to do the same to those around us, both friend and enemy. therefore we can trust God with our doubts, because of our confidence in who he is.

----------

to be  continued...

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


last week, we talked with and posted an interview with former humc associate, chris perry. we appreciated the insight on several different topics we got from chris, even if he would probably admit, himself, that he kept some of his thoughts closer to his vest than our conversation. that's fair, though. we weren't looking to get him any trouble. honestly, i think the tone of chris' answers allows us to see just how much pressure our ministers feel when trying not to rock the boat of their congregation in a way that would inject more drama than holy tension.

this week, we offer something a little different. over the same period of time, i asked huffman's newest staff member, andy rickles, to participate in a like-minded interview. we started with the same first question, but the conversation evolved in a much different way after that.

i hope, once you get to the end of these two or three or four posts, you'll be excited about the thoughtful talent our church just hired. if nothing else, you'll have some good stuff to start a conversation with andy about the next time you shake his hand.

without further ado, we proceed.

ee cummings and i appreciate andy's similar disdain for capital letters.

"If you don't mind, tell us your general thoughts on social media and it's value to the global discourse. As a follow-up, how have you integrated social media into your own person ministry?" 

----------

i believe that social media has not just changed the methods by which we communicate, but the very essence of the conversation. we are connected on a global scale like never before, and this has given way to an ever shrinking world. one in which we can connect in real time to friends and family around the world. i believe that this has led to a decentralization of authority, as the availability of voices has exploded, and we no longer rely on traditional media outlets and authority figures for our information and direction. personally, when i am looking for news, i head to twitter, not cnn or msnbc. though this may have an inherent danger of wrong information getting out, it seems an acceptable risk for the benefit of getting the news quicker and more directly.

 

in my personal ministry, i am almost forced to communicate this way. when i began at huffman, the first, and it seemed most necessary, thing was to set up accounts on twitter, facebook, and instagram. and i have had to think beyond just using those for the spread of information or to generate buzz (both of which are good uses for this media). at its best, and what i am working toward, is creating a community that exists online alongside the one we create in our face to face interactions. this is beneficial in that it can expand our sphere of influence. it is necessary in that it is the language that my students speak. it is indeed an exciting and scary proposition, but one in which the church, and specifically youth ministries, must be on the forefront of if we are to have any place at the global conversation of the 21st century.

----------

how do you see your approach to social media differing from what you have experienced in your former years as a youth pastor and your most recent experience as a lay person? do you believe churches have any idea what to do with social media? 

----------

as far as my approach, i would say that i am just now really developing one. at the time of my last job as a youth pastor, social media was still in its toddler years, struggling with figuring out how to move. facebook was certainly a thing, but not as pervasive as it is now. basically, social media (and electronic media in general (email, text, etc.)) was simply another way for me to disseminate information. keep parents and kids in the loop, so to speak. in the ensuing "lay" years, it was not my responsibility to figure this out, so i approached it as an observer, and ultimately a user. i saw how other churches, blogs, charities, websites, etc used it and learned my lessons positively or negatively from that. now, i see it as an absolutely integral part to what i am trying to create. the online and "real life" communities must exist together. because i am just beginning this journey at huffman, this is all in its infancy stage, but i foresee a time when the online community builds upon the face to face, and vice versa. for example, one experiment that i am building toward is the idea of "crowd-sourcing" our teaching times. as we build toward a wednesday or sunday gathering, begin several days earlier with preliminary sorts of discussion questions. draw from those answers, stories, and more questions to create a "real-life" discussion that was organically created by the entire community, not just poured from the head of the so-called expert. dangerous? maybe. interesting and potentially life-giving. certainly.

as far as the church, i don't think most churches fully realize the potential of social media. some do, of course. but on a large scale, i think that they are floundering to scratch the surface of the possibilities. i think the reason for this is it requires the decentralization of authority from a "professional" pastor, who has the answers and leads the conversation, to the pastor as a conductor of a choir full of myriad voices, who are not necessarily singing from the same page, or in the same key, and certainly not in the same room. somehow, s/he must coax out something melodious from that. 

to be continued...

"are you not entertained?"

i think about this clip all the time. i used to quietly think of it when it had become obvious i had rubbed somebody the wrong way with the blog or on facebook.

"are you not entertained?! are you NOT entertained?!!! is this not why you are here?!"

because, honestly, of course it is.

sweet baby jesus, kevin. why would you say such mean things and use such foul language to make such a blunt point?

i would think to myself and, to some degree, still do, "what ship have you been sailing on, lady? don't you know who i am? this isn't shtick, bro. this is me. you came here. you typed in the address. you saved this place on your favorites bar. i didn't invite you to this party. the internet gave you a choice. and you chose here."

that was kind of then.

this is now.

my feelings on the issue have softened a bit, because, nowadays, i do invite you here. i'll post something and shoot a link out to facebook. again, i don't have any mind control powers over you. so, if you are worried about being offended, you can still scroll on down that happy facebook trail. in the end, though, i'd rather you click and read and join in the conversation that i am having with myself from time to time.

for almost eight years now, i've been creating this place "for all the world to see", but, more specifically, to create a very vague and abstract outline to my girls to what made their daddy tick when all they worried about was who was controlling the remote and their hardest daily decision was "disney hd, or pbs?". i suppose, at some point, i'll start feeling comfortable talking to them about this kind of stuff at the dinner table, but we are still several years away from that.

i digress.

no, i used to think about this clip all the time as it concerned me and my personal opinions i put on HACAJAM. now, i think about it differently.

i think about it when i drive down parkway east in eastlake, huffman, and center point. when i drive by the empty storefronts and the check cashing joints and the title loan places and the fast food and the guy dancing out in front of the little caesar's pizza place. when i see folks on camera petty thieving from me and the store. when i look a homeless guy in the face and then turn the other way.

"are you not entertained? are you NOT entertained?! is this not why you are here?!"

this is what some people want, do they not?

god help me. is this what i want?

those that aren't living paycheck to paycheck want the poor on that wall. they need to poor on that wall. the helpless. the broken. the "takers".

those poor, in a very wicked and perverted sense of the word, are entertainers. faceless and nameless masses that make some of you us feel better about themselves. make them feel okay about their lot in life. to celebrate the deluded idea that they have worked harder than others. to celebrate having gotten past hard times while the faceless, poor black people masses didn't have the work ethic to make it to the better side of the tracks. to perpetuate the issues of our community by white flight-ing our asses out of the city.

"this is america, goddammit. if you want to make it in this country, all you have to do is try!"

such bullshit. such fiction. such entertainment.

how many times have we jumped on facebook and read some lazy ass e-card that shitted on another human but also reinforced our self-righteous worldview? we think about sharing it, condoning the lazy ass sentiment and hoping to get some passive aggressive likes. and then, what's worse? we do it. we share that shit. even worse? we get some some passive-aggressive likes, and then we stare slack-jawed or get offended if someone comes along and pushes back at us.

"are you not entertained? is this not why you are here?!"

of course it is.

in the scene from gladiator, maximus has just slayed a bunch of humans, blood and guts and limbs lay before a now somewhat conflicted crowd. they were not prepared for the underdog to win. they were there to cheer maximus being torn from limb to limb. to celebrate the violence they were already desensitized to. but then the community maximus pushed back. and we the onlookers were confused.


don't we do the same thing? we are totally fine with there being poor people, just so long as we aren't one of them. we are totally fine with war, so long as we aren't the ones fighting it. we are fine with kids on the corners of east lake dealing drugs, just so long as they aren't our kids.

but we get offended when one of those underdogs pushes back? really? robs us? puts a gun to our head, figuratively reciprocating the suffocating feeling they've always known???

"are you not entertained?"

you should be, man. because this is what you are asking for. each and every time you prop up your worldview on someone less fortunate than you's back, you're asking for it. every time you share that fucking ignorant e-card about people on welfare not being allowed iphones, you're asking for it. because you consider yourself to be more committed or more valuable than another human being without knowing shit about another person's life and circumstances.

i wonder, "why?"

why on earth would you think that was okay? what happened to you to make you think that poverty isn't every bit your fault as it is mine? why won't you we do something more about it?

can we at least start giving some thought to other humans instead of our stupid-ass rights? please???

can we stop pretending like doing one unselfish thing every once and again builds up some imaginary credit in our imaginary head banks to be assholes or, worse, ignorant the rest of the week?

can we stop whining about how early we have to get up to go to work? can we stop bitching about how bad we feel if we aren't willing to get up off our couches, stop smoking, start exercising, and start making efforts to help our bodies function without the literal and figurative shit we thrust upon it? how about we only share the stupid e-cards that poke fun at our human experience, and we stop forwarding anything that makes us sound any more high and mighty than our neighbor? deal?

a love deal? a hippie commune kind of deal? that we are all in this together, fighting for the greater good and we won't stop building our hippie commune 'til there are more of us than there are of them kind of deal?

it's your choice, of course. i don't own the guns to force you to do anything.

but if you opt out, if you keep bullying your "friends" because you've arrived at an arbitrary endpoint to your existence that will no longer allow you to adapt to other people's perspectives, don't be surprised when the underdog eventually pushes back.

"are you not entertained?!"