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.

my armpit is peeling!

bet you never imagined seeing that as a title for a post.

near the end of radiation, my right side took a beating.  nothing too severe.  it just looked like a bad sunburn that covered part of my neck, shoulder & armpit... front & back.  and i had some nasty blisters around my collar bone that turned pretty raw.  (be glad i resisted posting pictures!)

my kids probably hadn't seen my incision since surgery #2... and i tend to keep that area covered pretty well.  no use subjecting them to needless trauma.  but the other day while i was standing in the kitchen, emma asked, "dad, why is your neck so red?'  so beth had me take off my shirt and show them the damage.  luckily it wasn't right before dinner.

ian's our huggy kid.  so he immediately crossed the room and put his arms around me.  and i think they all treated me a little nicer for a day or two.

with a little loving care... it's healed beautifully... the peeling being the final stage of recovery.

it reminds me of my docs words.  "there is no such thing as a healthy tan."  because the reality is that tanning is simply your skin trying to recover from the sun's damage.  pearls before swine in our beauty craving culture... as it was for me when i was younger.

physical therapy has gone well too.  i'm amazed at how much stronger my arm is getting... and how much more range i have with it.  just have to keep those exercises going.

dr. lao will schedule scans for august some time.  and we'll go from there.  the farther it is from treatment, the more they'll be able to differentiate between healing tissue & possible cancer.  hopefully it won't show anything.

time will tell.

thanks for all the prayers.

radiation is my friend. sort of...

tomorrow's my final treatment.

today was supposed to be my last one, but they goofed up and had to add a day.

i'm glad it's about over.  the side effects haven't been too bad.  certainly nothing compared to what i went through last summer.  but still it's not been fun.

the fatigue has actually lessened a bit over this past week or two.  they / i didn't expect that.  so i'm thankful for all who prayed for energy.

i fully anticipated my armpit to be the biggest irritation problem, but it's been the part where my neck connects to my shoulder that's bothered me most.  i started with pure aloe... moved to hydrocortizone... and graduated to silver sulfadiazine.  maybe tomorrow they'll hand me a bottle of sweet baby rays. 

i had a good talk with dr. soriano last week.  actually... every week we have good talks.  i'm thankful that i keep getting great doctors who take interest in more than my physical health...  and allow me inside their heads a bit.  what a huge responsibility they carry...  and tremendous blessing they are.

it's kind of weird to think that something that is intentionally burning & damaging my skin is supposed to help heal me of skin cancer.  of course... that's what's supposed to happen.  there are no guarantees in the art of medicine. 

a couple of weeks into all this, i started physical therapy.  was that ever a good thing!  i didn't realize how all the surgeries had affected my arm.  on top of the muscles damaged from 5 incisions and resulting scar tissue... the 10 months of lifting nothing more than a jug of milk had weakened my right arm substantially.  then slowly i've felt the radiation tightening things down, further restricting my range... but the p.t. has helped to keep it from getting worse than it was.  my range is improving slightly... and they're retraining muscles to compensate for those that were weakened or removed.

thankfully it's not the painful kind of rehab like after some shoulder surgeries.  i guess this is supposed to help me from getting to that point.  seems to be working so far.

i'm not sure how it's all going to end in the morning.  do they give you a radiation cake?  usually each morning when the tech leaves the room, i wait for that familiar buzz that tells everyone the beam is activated... then i pray for my m&m buddy, kris.  but i'm trying to come up with something special for my last day.

i told one of the techs that sometimes when i hear that little buzz... i'm tempted to start screaming at the top of my lungs... "aaaahhhh!!!  turn it off!!!  turn it off!!!  something's gone wrong!!!" 

but my wife doesn't think that would be very funny.

thanks G*D, for helping me through this last 7 weeks.  and now as i wait for whatever is next... let me wait in confidence & peace... knowing that these days are more about healing & moving forward than i could ever understand.

it's time...

it's hard to believe that it's been 18 months since this cancer journey started.

i'm feeling well.  the radiation is going smoothly at this point.  just a little tenderness that will likely worsen in the coming weeks.  sometimes my arm aches, but i don't know if it's from surgery or radiation at this point.  time will tell, i guess.  thankfully it's not constant.

all in all... i'm good.  i was prepared to come out of the last operation with limited use of my arm.  so this is nothing.  thanks be to G*D.

dr. lao is saying that when the radiation is complete, we'll give it another month to cook... then do another scan before he determines if the high-dose il-2 regimen is the appropriate next step.

waiting on scans has become a regular part of our world.  it's hard to make plans past 3 months simply because we don't know what things will look like in 3 months.  that's not me being doom & gloom.  that's just me being realistic.

which is why i pushed a conversation with the elders about the need for the church to move on.  actually, it's something i brought up almost immediately after i was diagnosed, because i know this disease all too well, and wanted the church to be thinking ahead & prepared.  my reality is that even if this next scan is clear... the one after that may not be... or the one after that.  for at least the next 2 years, i'll always be just 3 months away from another scan that could send me back into treatment.  of course i'm hopeful that won't be how it plays out.  but our church community needs someone with a bigger vision that i can give right now... someone who can dig in and drive the movement that needs to happen.

over this journey, westwinds has been more wonderful, patient & generous than i could have ever asked... giving me time away... continuing my medical benefits... and even supplementing the disability policy that i purchased before i came to michigan.  they've made life so much easier than it could have been.

they've waited, prayed & hoped for my return... but a few months back when that 3 month scan indicated the cancer had returned yet again, i approached the elders and encouraged them to realize that it was time...

...time to move forward  ...time to think beyond "when randy gets back"s...  time to free dave & john from having to carry my load  ...time to release the church to get some things done in some much needed areas. 

let's face it... the reality is that i haven't been able to effectively do my job for a year and a half.

so monday night at "love shack" i announced that this medical leave of absence was taking a turn.

we don't have plans to move.  we'll still attend and be involved in the church we love... just in a different capacity and as energy permits.

thankfully beth's job is stable even in this michigan economy.  westwinds has an amazing medical plan; but her company has a good plan too... one that will pick us up and even enable us to stay with the same doctors.  we still smile whenever we remember she got this job just one week before i was diagnosed.

so obviously G*D.

on top of that... westwinds has committed to generously continue supplementing my disability for a good while to help ease the transition.

more than we could ever have asked.

sometimes i'll admit that i wonder what will happen in 6 months if things are going well and my doc says i can begin working again.  but... then i remember that my job as a follower of Jesus has always only ever been simply to obey the one thing G*D is asking me to do today... confident there will be new instructions waiting for me with the sunrise.  my job isn't to dwell in tomorrows, but to continue to allow him to transform me in each "now"... and to join him in offering that same healing to the world.

that might sound strange to hear someone with cancer say they want to bring healing to the world.  but... just because one area of my life remains sick doesn't mean he hasn't done amazing things in all the other areas.  and to focus on what he hasn't done seems to me like i'd be ignoring all he has done, is doing, and plans to do.

lord, forgive us for missing & devaluing your work just because it's not yet complete.

i guess that's somewhat the challenge of LIFE vs. life.  that is... to be able to see the beauty in spite of the dung we keep stepping in. 

when it comes down to it, we're all just beggars standing in the same line at the soup kitchen.  and when our portion doesn't quite remove all the hunger pains, or taste the way we'd like... rather than appreciate what we've just consumed, we grumble over not getting seconds while staring at the people waiting in line for their first helping.

lord... i don't want to miss an ounce of the goodness you desire for me to enjoy.  but at the same time, keep me from being greedy or demanding.  because it seems to me that any kind of gluttony is sin... maybe even more so when it comes to stuffing our faces with all you give us.

anyway... does all this transition feel weird?  of course it does.  i've been in christian ministry for almost 30 years.  how could it not?  but i'm sure that's another post or two someplace down the path.  the bottom line remains.

it's time.

and it's okay.

1 down and 32 to go...

i had my first radiation treatment today.

it really wasn't any big deal.

you lay on a table and the big machine buzzes... and you're done.

piece of cake.  but then again... it was only my first day.

they say side effects should be minimal.

if you're the praying kind.. i'll be there every morning at 8:10 (e.s.t.).  weekends off.

tatt-le tale...

i headed down for my "simulation" yesterday.

probably the normal stuff for people preparing for radiation.  just new to me.  everything went smoothly and they said my incision is healing nicely... so i'm good to go.

i was a little surprised though.  in order for them to keep a reference point for targeting the exact area to radiate... they tattooed me!

and... i'm a little disappointed, to be honest.

i mean.  i always thought my first tattoo would be something memorable... like "mom" or some cool picture of... ...something cool.

instead... i get 3 tiny dots... like freckles.

what am i supposed to do with that?

they're not close enough to make an image of a bowling ball once treatment's over or anything.  they're even too far apart to form some grand constellation.

just little black dots that my grandkids will probably notice sometime when i've fallen asleep at the beach.  "hey, granny beth!  what are these black dots on grandpapa?"

oh well.  i've got six & a half weeks of radiation before they become totally meaningless.

my friend "tim" once asked what the 3 littles dots mean that i use frequently when i post to my blog.  you know those "..." things i substitute for commas from time to time?

anyway... no one had ever asked me that question before... so i told him they represent the trinity (because it just came out of my mouth... and you know how super spiritual i am all the time.)

anyway...

maybe i'll just tell my grandkids they represent the trinity.

no... that's dumb.

i mean... tim may fall for it... but my grandkids will be much too smart for that.

radiation starts wednesday of next week.  i guess i know what i'll be thinking about during treatment.

isn't this about plan 'q'?

so... i've just been sitting around healing.  not doing much else.  trying to avoid those "you're over doing it" glares from beth.

stitches came out last week.  they'd told me to be moving my arm as much as possible before they came out so that i could go easy on the incision once the stitches were gone.  they don't want it opening up and running the risk of being forced to wait longer for radiation to start.  dr. sabel was pleased with the outcome and glad to see he hadn't damaged any significant nerves.  (not as glad as i was!)

tuesday i head to the lymphedema clinic for some preventative training.  i'm looking forward to that.  i have very slight swelling in my right arm, but at times it's a bit uncomfortable.  nothing i can't easily handle though, so i'm not complaining.  however... no sense in it getting worse if there are some little exercises i can be doing to help.

then wednesday i finally have my appointment with radiation oncology so they can do their prep ct thingy.  they say that treatment begins about a week later. 

it will be nice to have a plan in motion... and to be working the plan.

this whole thing is going so differently than i anticipated when i started my medical leave.  i thought i'd be having only 2 weeks of radiation and then jumping into the really yukky stuff with the high-dose il-2.  but now that radiation has been extended to 6.5 weeks... my doc is holding his cards a little more closely about what we'll do after radiation. 

i guess he's not really hiding anything though.  he just wants to see where we land before he makes a call.  and that's one of the things i like about him.  he doesn't go by the book.  he thinks every step through carefully.

since good ol' dad's feeling so well, the kids are begging for our usual "minute-after-midnight" showing for the next "gotta-see-together-before-anyone-else-does" movie to come out later this week... narnia - prince caspian.

hope it's good.

fascinating reading...

in prep for my initial radiation oncology appointment today... they asked for a list of all the dates & docs for my various surgeries, including biopsies.  we could reconstruct the surgery list pretty easily... but the biopsy one wasn't something we'd been tracking.

from time to time we've asked docs for copies of different reports that have been produced concerning emma or myself... mostly pathology.  they've always been very cooperative.  so... asking them to print out the dates of all my proceedures was no biggie.

but in the process, i decided to ask for something i've never asked for before.  that being... operative notes. 

i figured the worst they could do was laugh loudly...  or nervously...  and say "no."

but as has become standard fare at u of m... they just said "sure.  no problem."

so... while beth drove us home from a recent appointment, i enjoyed wading through the medical jargon to envision a bit about what went on between intubation and sponge counts.

hearing about how they slice and dice... identify nerves... verify which nerve is which by making me do various circus tricks... blah, blah, blah... was all intriguing to me for some reason... even reassuring in some strange way.

i was a bit disappointed, though, to find out they don't include the jokes the surgeons told... the embarrassing questions they asked me under anesthesia... or the music in the cd player while the scapel glided through my latissimus dorsi.

the latest surgery notes weren't ready yet.  but i'll ask for them tomorrow when i return to say good-bye to my drain-buddy.

odd. 

it's like i'm waiting for the next book in a series.  (obviously i don't read many serial books!)

i'm curious though.  a day or two after we were home from surgery... i noticed this huge patch of shaved skin on my right thigh.  our amazing nurse practicioner, roxanne, verified they were preparing to do a skin graph because they were concerned they wouldn't have enough skin left in my armpit to close the wound and keep it closed until it healed... or that if they did, it would be so tight i'd never be able to raise my arm high enough to pick my nose.  (a tragic thought indeed!) 

but... evidently they made it work some how.  i'm glad no one reminded them i'd still have a good left hand.  but who picks their nose with their left hand?  that's just weird.

anyway... so, no graph.

i wonder.

when you move skin from your thigh to your armpit... does it naturally grow armpit hair?  or would i need therapy?  would i still need to use deodorant?  and if i wanted to strengthen that arm, could i use a thigh-master?

hmmm...

maybe it will all be in the notes.

can't wait.