fogparty

more newest reality... just a sliver...

eventually, the m.r.i. would indicate that my brain was clear.  but the ct of my lungs would show that, unusual as it may be my difficulty in breathing was indeed due to the cancer.  he said, "your tumors are in all the wrong places."  some, in fact, had caused one of my lobes to collapse... which explains why i was struggling to get my breath!

so... i started the clinical trial in early september.

ian has wednesdays off... so he faithfully drove me there and back (& still does).  i think it's probably a good thing for him to see me there.  i'm guessing it helps him to acclimate to our shared reality.  anyway... we enjoy the time together until i drift off to benedryl land when he continues doing whatever he does on his computer.

the side effects for this regimen are minimal compared to some of the other treatments i've endured.  still... they're challenging.  there were 3 of the 8 weeks when i couldn't have the infusion for one reason or another... usually because of low phosphorous or low platelets.  beth might disagree with my assessment of how things have gone.  as the main bread-winner now... as well as my nurse... it takes it's toll.  i know there were days when we'd look at each other and know that what i was experiencing wasn't sustainable.  i lost nearly 20 lbs. in that first month and a half before meds could be adjusted to get things balanced.  more than ever before, i encountered the direct correlation between what & how much went into my body vs. how much energy i would have.

the study runs in 2 month cycles... each one ending with a ct to give direction as to whether or not the treatment is effective and should be continued.  i completed my first 8 weeks at the beginning of october and was hoping for some clear indication of progress... but my heart & my body were telling me that the results would show a mixed bag at best.  i was breathing better, but i could feel new lumps developing under my skin.  such hints forced me back to rely upon G*D above all.  the best possible spot to be.

the incredible news was that the ct showed an 80-90% reduction of the tumors in my lungs!  that was fantastic news... especially with this type & stage of cancer.  other tumors had shrunken by 10-30%, which is great as well.  but other tumors had grown... and even worse, new ones had popped up in new places.  not good.

a mixed bag indeed.

however... the improvement in my lungs was enough to give us the green light to continue the treatment.  the hope & prayer is that sooner than later the rest of my body will begin to respond as my lungs have. 

i have to admit that on those days when i lose perspective, this all feels like a race against time.

due to those left-butt-cheek tumors, pain very quickly became a constant issue.  my hip & thigh were the main culprits.  they put me on painkillers 24/7, and taught me some tricks designed to help me stay in front of the pain as things continue to change.

another med was ordered to boost my appetite & energy... and it worked.  slowly things began to turn around and feel a bit more normal... then they gravitated to the other extreme.  even with the low dosage, i hardly slept at all.  i got a lot of things done around the house though... and learned a few things about myself along the way that i may share later.

of course, that pace wasn't sustainable... so a new med was ordered to counteract that med... encouraging me to sleep at night.  seems to be working at this point... but from time to time i still wake up in excruciating pain.

and so we adjust... and the cycle continues.

people ask if these past couple of years have felt like one battering ram after another pounding down my castle door to allow some marauder to enter & shove my face into the dirt.

kind of, i guess.  but not really.

it's true that i never know what's waiting around the corner.  but it's also true that almost every face plant has been preceded by a warning shot of sorts... signally me to brace myself for the intruders about to cross the moat.

maybe i'm just desperate... but i began to view those alerts as slivers of G*D's love & kindness... tidbits of his mercy... proof that i was not alone or abandoned... and that he was/is there to take care of me.

so... i can't say that i was completely caught off guard by how the summer ended and these new subway stops at which i find myself exiting only to stand on dark & unfamiliar platform in some distant part of town.  of course... to suggest that i was prepared to hear the cancer had spread would be terribly inaccurate as well.

but the slivers, the hints, the clues... they all expose the many threads the sutures buried over the years.  threads that now bind me to The-One-Who-Sews-Me-Up-Every-Time.  when i turn my head, his rod & staff are always there in the corner of my room.

and i'm not alone...

...unless i choose to be.

my newest reality... contd.

this post is a continuation of my attempt to catch everyone up to speed on what has happened over the last months since i stopped posting.

being a husband & dad makes it difficult to hide in the corner sucking my "poor me" thumb for very long.  there are always others in the room who are waiting to hear... concerned & anxious, balancing fear & hope just like i was only moments ago when i ran in ignorance.

i'd never hidden from beth anything that dr. lao has said to me before, and i didn't want to hide dr. vanwagnen's call from her either.  but i decided to hold the horse in the shoot until i could talk with dr. lao.  the timing of it all caught me off guard and i wanted his fuller oncological perspective to somehow put blanks in the shotgun i was about to unload on her.  but the longer dr. lao was unavailable, the more i wanted & need to be one with her again.

all through this thing, we'd agreed to be honest with the kids as well... telling them first... telling them everything.  we'd each pray, asking G*D for the best words and timing to help the kids stare down that same barrel we had.

it was never easy.  but it always seemed like G*D had answered our prayers.

i'm so proud of how each of them has handled the news every time we've had to load that shotgun over the past 2 years.  above all... i want them to be honest about all that they're thinking & feeling.  but sometimes it's hard to know what we're feeling.  so my biggest desires is that these challenges would lead them into intimacy with those around them... and especially with the G*D whose been faithful to me through the decades.

i guess "numb" is something we feel quite regularly these days.  which is probably a good thing.  numb is like G*D putting a funnel into our heads in order to regulate the flow of information to more tolerable levels.  so... we'll take numb... and even see it as a gift.

humor finds its place along this dark journey too.  it helps a great deal.  not that we use it to hide... although i'm sure we do at times.  but more so it reminds us that we mustn't take ourselves too seriously.  so we've had some laughs about how i used to have armpit cancer, and now i have butt-cheek cancer!  ian didn't think it was very funny at the time, but he's since come around.  laughter opens the door for a shift in perspective.

that next day, beth joined me for the appointment, ready with pen & notebook.  one by one our questions were answered with as much forthrightness & sensitivity as the situation demanded.  dr. lao has become a good friend to us both.  he ordered an mri to see if it was in my brain as well.  it wouldn't change the prognosis, but it would alter the treatment plan.  and he ordered a ct to get a better look at what was going on with my lungs.

since we needed to find out the results from the mri before we landed on a firm treatment plan... we could only discuss probably options at this point.  however... we left with a pretty good idea of what next.  we were leaning at staying at the u of m to participate in a clinical trial that our own favorite doc was administering.  it was showing some very promising results, but was in the extremely early stages of study.

it would involve 2 study drugs (one taken by mouth 2x/day & one received through a weekly infusion.)  neither of these drugs works like chemo.  instead of attacking all my bogy's cells, they only attack the bad ones.  the premise is this... cancer cells have a mechanism that tells them to keep living & reproducing.  normal cells don't have that mechanism.  so they run a normal life (& death) cycle.  so the intention is that these drugs will block the mechanism in the bad cells and free them to live (& die) like normal cells.

it's a very cool concept.  those just ahead of me in the initial trial were seeing some very promising results... although it was too early in the study to tell the long term benefits.  it all seemed very hopeful... or at least potentially so. 

but the conversation somewhat turned into a dark alley when he looked me in the eyes and said, "we need this treatment to work and work fast.  if we don't see some definitive results from this first 2-month phase, you won't have much time left."

welcome to my newest reality...

i've spent a considerable amount of time trying to figure out how best to bring people up to speed on what's happened during my blogging sabbatical.  after several attempts... i'm taking one final stab.  it will probably come out in several different posts... so please be patient.  i've gotta start somewhere.

this past summer... sometime after my "blah... blah... blah" post... the tectonic plates beneath my feet began to shift again.  as if it wasn't enough that my cancer had returned once more... or that i'd left my position at westwinds permanently.

i'd come to ww to rethink everything.  but i was realizing that in the contract G*D had written for me, his definition for "everything" was a grand canyon bit bigger than my own.

anyway... i'd been trying to get out and walk each day... even doing a bit of running in spite of an awkward heaviness in my chest.  physical therapy had extended my range of motion & pumped some strength back into my right arm.  it all felt so good.  i was tasting normalcy... and my body was begging for another helping.

but somewhere in my consciousness... as much as i didn't want to face it... that stiffness in my lungs hinted that not everything was progressing as smoothly as i was hoping.  was it a cold... allergies... was my asthma bothering me again after all these years... was it the cancer?  a pet scan was already on the books at the u for the end of august... but rather than wait, i made an appointment with my regular physician, dr. aaron vanwagnen.  it had been a good while since i'd been in to pester him anyway. 

dr. a. is a wild man.  he's fast, friendly... and very "let's get to the bottom of this"-ish.  add his sidekick nurse, beth, into the mix and office visits fall someplace between the feel of an old family reunion and a night with barnum & bailey under the big top.  that day in the office was no exception.  even if i don't leave feeling better, i always walk away feeling loved.

he ordered a couple of simple tests, but was confident it was just a bit of gird stirring up my asthma.  very treatable.  besides... he knew that if it was something more serious, the pet scan would tell us.

i remember leaving the office on a bit of a high.  that normalcy on which i'd been nibbling had gotten a milky coating of hope... and was tasting even better.  i drove away with the anticipation that i was indeed on an upward trend... and he was going to do whatever he could to help me get my life back.

it was a feeling i hadn't felt in a very long time.

but it wouldn't last.

_______________

fast forward...

i was up fairly early that morning... down in the kitchen by myself.  i recognized the number on the caller i.d. as being dr. a's private line... and thinking it was his nurse calling with some information about those other test results, i picked up the phone.  dr. a.'s voice had its usual friendly bellow, but was mixed with as much concern as doctors are allowed.  he simply said, "i'm looking at your report, randy"... (i'm still thinking the other test at this point) ..."and it's not good.  it's not good at all.  it's everywhere, my friend.  i'm so sorry.  i don't know if there's even anything they can try.  it's really bad."

my mind jerked as it attempted to downshift into 1st gear from 3rd.  you'll understand when i tell you that the whiplash was ruthless.

later that day i'd speak with dr. lao who hadn't seen the report yet when i called.  he pulled it up as we talked on the phone and i remember a long silence followed by, "that sucks."  i'm not sure where our conversation went after that.  my new reality was still sinking in for both of us... and somehow i'd hoped that chris would give me a more optimistic take on the results.  we had originally agreed not to talk results until our appointment.  but that plan was lying on the tracks about 300 miles back.

not only was the cancer back... it had spread significantly throughout my body.  it was almost easier to say where it wasn't, than where it now was.  my lungs were so filled with tumors that the report used the word "innumerable".

i wasn't completely caught off guard though.  in the days since my appointment with dr. a.w., i'd begun to experience some pain in my left hip area... specifically my left butt cheek and on down.  so i asked if the scan showed a connection between that pain & the cancer.  it did.

naturally i also assumed that the tightness in my chest was due to those "innumerable" tumors.  but strangely he said that when melanoma presents in the lungs, it usually doesn't cause breathing problems.  so... he suggested a ct for a definitive answer.

i could tell you more, but there's really no point.  bottom line, i was... am... stage IV... "incurable" from a medical perspective.  i hung up the phone knowing i would see him at our appointment the next day.

and the questions started to fill the pages of my mind.

i know... i know...

yes... that post was way too long... and probably very confusing to most people.  sorry.

but... then again. 

it's my journal!!!

it's about time...

we were talking about who-knows-what that day when the clock began to chime.  each time i hear those sounds my soul is instantly shipped to grandpa & grandma campbell's old farm near huntington... to so many unique experiences... and to feelings that are hard to explain, but somehow important... these days, especially.

on a somewhat funnier note...

some of you might not find this video humorous.  but since obama won the election... canada will probably shelve this idea for immigration expansion before it hits the u.s. television networks.

so in spite of knowing that many of my canadian family and friends may think it strikes a little (or a lot) too close to home... i'm offering it to you for your viewing enjoyment...

...and to keep you thinking.

c'mon... move to canada!

historic... to be sure.

something pretty cool happened in our family today. 

today was a first for 3 shafers.

between beth becoming a u.s. citizen this year... and the juxtaposition of jenn & ian's birthdates... it worked out that for the 1st time the 3 of them had the opportunity to join me in helping decide who will lead our country for the next 4 years.

i wish i could guarantee that our votes didn't cancel each other out.

but whatever happens tonight... these are fascinating days we're living in.  i'm reminded how frequently in history G*D has used complex times to advance his redemptive/kingdom agenda through leaders who fell absurdly short of qualifying for what most of us think G*D's starting line-up might look like.  (and that statement remains the same regardless of who wins the election)

i rest in the strength & dexterity of an involved G*D... regardless of my inability to know & understand all the things that influence his movement.

and then to hear that my newly citizenized wife had texted her kids to remind them that today is the greatest day in america... and that many men & women had given their lives to guarantee their freedom...

...well... ...in spite of all its challenges & difficulties & many sins... it makes me thankful to live in the good ol' u.s. of a.

thanks G*D.

which question is more important... ..."who?" ...or "how?"

something's been stirring me out of my blogging-slumber. 

the election. 

well... kind of.  but before you retreat back to facebook...  ...aren't you just a little bit curious about why november 4th is clogging my brain-waves?

we're all more than tired of the campaigning... the rhetoric... the tv ads... the posturing... the "half-the-story" lies.  yet we tolerate them year after year... and somehow manage to proclaim one candidate "good".  if we're not careful... we could easily be lulled into thinking that all of life itself pivots upon who'll be sitting in that oval office.

but that's not exactly the whole story, is it?

in our confusion, many of us flip to "the office" and mumble "whatever, i'm just one vote" under our breath.  ...an equally irresponsible posture. 

but above "the who"... what's troubling me more is "the how".  how are we deciding who to vote for come tuesday?

likeable?  convincing?  experienced?  youthful?  credible?  fresh?  fierce?  key issues? 

one term that always finds itself under my essentials for leadership is "humility."  hmmmm... not sure where that fits with either  presidential candidate... or any politician for that matter.  but the more i think about it... it's huge for me.  rarely do i trust anyone in authority unless i observe a healthy slice of good ol' fashioned humble pie snuggled between self-confidence and a defensible plan.

but i've lost focus.  back to the question. 

let's expose it even more.  "how do we (as people who claim to be christian) make any significant conclusion?"

decision-making and the will of G*D is a huge bag of paperclips... and i don't pretend to have the answers.  at the same time... i don't like what i see.  or maybe it's what i don't see.

frankly, i'm disturbed by the overall incompetence in christians regarding their ability & willingness to engage G*D in their decision-making regarding political issues or otherwise.

maybe i've lost something in our post-modern context, but shouldn't becoming a christian reorient us from the ground up?  it seems to me that the re-allignment of becoming a christ-follower initiates a fundamental shift in how one approaches everything.  sure... it may start slowly and take time... but eventually it infiltrates & transforms completely.  or at least, isn't it supposed to?

seems to me that we rest our elbows on a table with legs vastly different from those of other leaders or ideologies.

1. no matter how old, wise, or learned we become, we will always have limited capacity for understanding all the factors surrounding any given issue.
2. similarly... we will always have limited understanding of the value G*D places on each of those issues.
3. only G*D knows the total history, mind & heart of a person (or candidate).
4. as important as it is... government is never the end-all solution to our personal, moral & cultural predicament.

the christian understands himself to be a finite being.  so... saturating & transcending all our thoughts must be an approach to life & decision-making that is fundamentally dependent... outside ourselves.

jumping off a more positive ledge... ...humility & dependence strip bare the leads... uncover the wonder of re-discovering Jesus' pulse... and offer us the healing infection of dignity, purpose, & relationship that we so desperately fought for when we carried life on our own shoulders.

so... given these realities... the christian swims in the reality that our decisions are only as good as the ongoing relationships that restore us. 

to fight my own illusion of independence... i ask G*D & others for insight.

1. am i becoming hateful & ungodly in my thoughts toward the candidates and/or others?
2. am i listening honestly to the opposing perspectives?
3. am i growing numb to the shortcomings in my own viewpoint or candidate?
4. am i becoming cynical or resentful?
5. does my political slant betray an inflated dependency upon my own intellect & emotions?
6. does my posture indicate that i'm abdicating my G*D-given abilities... or using them for self-interest?
7. when is the last time i felt challenged to look at something differently... or to adopt a different position?
8. have i become convinced that i understand the mind of G*D in scripture so completely that i no longer need to listen to him about such issues in order to gain his fresh perspective & insight?

i'm by no means perfect at all this.  but it helps me to realize that when formulating conclusions about complex issues... my goal is less to come up with the "right" conclusion as it is to yield to the movement of G*D within me... allowing him to make me aware of my narrowness & infancy... and the next steps in my recovery.  in that posture of dependency, he often reveals my pride, my shallowness, my self-focus, my failed systems of thinking... and offers new ways of approaching everything.  i may even discover that he's trumping my conclusions... shifting me miles away from the map quest coordinates i originally entered.  without question, i begin to see life's complexities more vividly and am challenged to pray more respectfully for the heart & mind of the person who will hold the highest office in the land.

but how helpful is all this G*D conversation when it comes down to it anyway?  sounds like a lot of effort when we just end up staring at the same list i mentioned at the top of this post to make our "good" choice before the polls close.  after all... i've never heard G*D say, "thou shalt vote for..."   

so... which is the more important question?  who?... or how?

i don't know.

i just think that for most of us, the "how" has gotten lost on the campaign trail someplace... and in pretty much every other life arena where decision-making is required.  i fear we're trading the wonder of intimacy with The Almighty for the fascination of analysis... mesmerized by our thirst for enlightenment.

and in the process, i fear we are training our children and those around us to think strikingly similar to the religious right, and the decidedly left, and the foolishly apathetic who surround us...

...instead of revealing that we are followers... first & foremost.

 

talk about time for a change.

blah... blah... blah...

i won't be blogging for a while.  i don't know what to say other than it just feels like it's time to stop.  this website may exist for a little while longer... just to see if the itch returns.

it's clear to me now that i understand less of what i thought i knew.  not sure if that means the fog has thickened or dissipated.

either way... i join job in saying, "surely i spoke of things i did not understand."

thanks to all of you who were faithful readers.  i could never have imagined.

and thanks to all of you who are faithful prayers.  what a gift you are.

my email remains randyshaf@aol.com... although i'm not always the best at replying.

keep listening for the music.

you were made for the dance.

the boxing match...

i made it into westwinds a couple of nights last week.  i had committed to myself to have sorted & boxed all the books that i wished to keep before we left on vacation.  there always seems to be a reason to avoid unpleasantries.. especially the kind that wait quietly.  but the guys have been more than patient... and physically there was no reason why i couldn't get it done.

i found the shared office shelves covered with scribblings & diagrams for future plans.  it almost seemed symbolic... like some cruel joke G*D was playing on me, forcing me to let go of the future to deal with my past.  at least the future i had anticipated.  i chose not to read them... for they are not mine to read or scrutinize... and i knew reading them would only fed-ex thoughts & emotions to my doorstep that i had no desire to open.

sorting through the books themselves was not as hard as i imagined.  but it was sobering to see tangibly how many useless books i'd hung onto.  at least useless in my thinking now.  time changes our perspective of things like this.  i'll let some friends go through what's left to see if they wish any of the spoils; although, i imagine there will be little of interest.  books hide their wisdom very easily... and the ones filled with little of it won't tell you otherwise until it's too late.

i mostly boxed books that i want to pass on to someone... or read again because they were that good... or have as a resource just in case.  but i'd say i purged about half of what i had.

i've packed many of these friends at least 4 times... this making the 5th.  that's how many churches i've served, not including the ones before t.e.d.s.  each time they went into the box with another church in mind... packed with a layer of excitement about the ministry potential in the next context.

holding some of them again rekindled that same anticipation... reminding me of the dreams & hopes i had for ministry... for changing the world.  it's not that i'm giving up on that dream.  it's just that it doesn't feel like i know my role in the dream right now.  i find myself refusing to think that it's time to pass the baton... although i know that time comes eventually for all of us.

yet... my thoughts are still so confusing that i cannot run into the future with any sense of direction.  which... to be honest... does at times make me wonder if the dream was authentic in the first place.

sometimes i wonder whether i'm approaching the crest of a hill, on top of which i'll see this incredible vista... or discover that i'm too late to brake for a fatal collision of sorts.  who can predict?  only G*D knows such things.

looking back over this journal entry makes me chuckle at the thought of people reading posts such as this who don't dip from the same melancholic salsa bowl as i.  how could they not think me "whacked"?  and how could they not say of me the same thing i've thought of them over the years... that being... "what a shame it is that they're missing so much in life."

oh well... i've only been given this one pair of eyes.  and only time will tell whether they've allowed me to see anything accurately at all... or if my mind has simply painted pictures over my blindness.

"lord, would you turn up the music?  please?"