Posts Tagged With: Good Times

A Thousand Years

i have sat and begun a draft of this update now more times than i can count. i have given it up to give it a day and come back at it fresh, only to find myself and it as old and lifeless and as stagnant as ever. there is a sort of numbing hum about it all right now – life, faith, art, my medical status, preparations for the transplant – a perpetual standstill. as soon as i think we are getting somewhere, there is another pause, a hitch, a sapping of inertia, and i stare at the screen and think, well, what do i say now?


so, first, my apologies for not being as active in transmitting our news and musings as of late. my few facebook and twitter posts over the past few weeks have let me believe (wrongly) that i’ve adequately conveyed all there is to convey, even though i know there are many of you who read this now who have no access to those.


we’ve fixed that to a certain extent, adding a twitter feed to the sidebar of my broken body blog, where brief moment-by-moment updates can be posted between my lengthier blog posts.


we may be starting a caring bridge page as well, one that both jen and i will contribute to. it’ll be more her ship than mine, a place where she can do her word-work with the hard times ahead, as well as share requests for prayer or practical help in the moment, and, assuming there’ll be stretches of time where i’m unable (or unmoved) to post much of my condition, she’ll be able to keep you all in the know nonetheless.


in the meantime, an update, and some thoughts:


it has been more than four months since my diagnosis. we are still waiting to begin the transplant. we’ve checked off all the prerequisites for my 4 to 8 week stay at the U of M.


since early february we have anticipated that admission several times over, only to be surprised by one delay after another. in recent weeks, it’s been because of a cold, and now an acute sinus infection, stubbornly persisting despite antibiotics and the mighty pot of neti.


wiping out my immune system will have to wait until i’m as well as i can be. a mild cold can become pneumonia once the walls are down. what’s a bit frustrating is i was as well as i could be up until it was time to go. four months of top-notch health, and then the week of my workup, i was hit with a nasty cold.


my doctors were eager to begin. so were we, i guess. i have consented to take part in a “first in human” study in which one of my matched cord blood units (we’ve learned there will be two, from different donors) will be infused with a compound to prep those stem cells for a quick engraftment.


cord blood stem cells, while abundant and very adaptive, are not the quickest at doing what they need to do. much like getting a room full of preschoolers to do one thing well together, the additive is an extra year of preschool prepping them to do just that. the intended result is one less week with no immune system; one less week of potential infections; one less week in isolation at the U.


in any case, i’m at a research institution where they’re ready to get the show on the road. but not for fear that my MDS will morph into leukemia; they say my disease is in a better place now than it was four months ago. my counts have normalized across the board, but that chromosome is still in the wrong.


so, while we’ve been expecting this thing to ratchet up several times over since the new year, my actual admission date has been scheduled and rescheduled for march 12, march 14, march 19, and now for april 2, and this is IF my sinuses clear by monday.


so, more time.


strange time.


twlight time; no longer day, not quite night.


some thoughts about time and timing:


when i was diagnosed last october, i was six months from the fifth anniversary of completing treatment for lymphoblastic lymphoma. at year five i’d have been pronounced a total cure.


it took that long for us to get our life back. my body was slow to heal from the blow of those two years – not that i got my old body back; that body’s gone – the body i came out with was broken in many ways, my current disease among them.


and in so many ways we were left with our heads spinning; disoriented; unsure how we’d do life in the new normal. our roles had changed when i got sick. they changed once again as i healed.


we had at last found our footing, we think; a clear vision of what life could be for us. there was help, a horizon, and a destination on the map.


my body was more or less strong enough to do some of those things i did before; i began doing concerts again; i had figured out how to do what i used to do with a mind slowed by medications treating pain a two-year treatment had left in its wake; pain that changed how much i could manage, how much i could do.


but we had figured things out, more or less, and life was working again.


beneath all of this was a shaken faith (read: strengthened) that had been restored. we weren’t as dumbstruck before God anymore; conversation was current and consistent; prayer was hopeful, expectant, and grateful; we had a faith made stronger by suffering; we’d come out of the furnace having met one “like the son of God.”


then, like a bolt out of the blue, i was hospitalized, jen’s dad died, and we were told the treatment that saved my life was threatening to take it on its own terms.


the timing of the lord is perfect.


they wished to transplant immediately. we asked for more time.


four months later, after preparations of all kinds, we are now about as ready as we can be, and find ourselves a bit fidgety as we have been told to wait some more.


we’ve prepared our hearts for the final descent several times over now, only to be told, for one reason or another, as many times as we’ve prepared: not yet.


i feel a bit like a boxer in the corner of the ring before a fight or between rounds, bouncing, shadow boxing, working up adrenaline for the fight that’s before him.


i wait for the bell that never rings.


i grow tired and spent.


so i sit. and then flinch. was i sleeping? i’m relaxed, too relaxed.


life is too normal, the fight too surreal, too absurd. i want another popsicle.


there’s more to do. always will be, perhaps. i’ve not sufficiently prepared for the possibility of death. i’ve not finished those letters to my boys. i’ve not given much thought to a funeral.


contingencies. preparing for the possible, just in case. maybe this week.


but i’m tired of it.


stalled and staring at the wall.


i have other things i’d like to do before i go in, and i now have the time to do it, but i’m stuck.


stuck in a life that feels so normal, so right.


this update has taken me nearly three weeks to write. i’ve wasted so much time writing drafts that i discard the next morning. if you’re reading this, i’ve managed to post it before i went to bed; had i waited until the morning, i’d have deemed it unfit to say what i wanted to say and started all over again.


we can’t make plans: i cannot get sick, or go out much in public. i missed that concert at the turf club.


house arrest: slow down, stop life, love your boys.


this i can do, and have much already: love my wife, see my friends, breathe.


the timing of the lord is perfect.


wait on the lord. wait. wait. wait.


say the word enough times and it starts to sound funny. it becomes strange. it begins to lose its meaning; the word is left silly; the word is just a word. now we have a word that means nothing, and an experience that has no name. it just is.


that is what it is like.


with the lord a thousand years is like a day, and his timing is always perfect.


but his perfect timing does not for us make a day of a thousand years. for us, it is still a thousand years.


what would a thousand years being like a day mean to us if we did not first know what a thousand years was like? a long, long time is what it is; meant to invoke the weight of waiting. waiting is work.


so it is like a thousand years, and we are tired, worn by waiting.


why we’d be eager to do something as that which we are about to do, i don’t know, but we are, it’s true. we are tired of waiting; the waiting is work.


at the same time it is work we are often willing to do. we must daily commit to it, and it doesn’t come naturally or easily, and we must work our hearts into the work, but somehow we want to do it, we want more time.


but then we get the time we wanted and forget we were waiting. we wake up dazed in the corner of a boxing ring in the middle of a fight, having just had a dream about popsicles.


so because of this, the speaking of our proneness to be discontent does not mean we are discontent indeed. we can feel the one thing and believe the other, slowly believing ourselves into feeling what we ought.


what we feel is we are squirmy, itching to begin, let the chips fall where they may.


what we feel is we aren’t ready, aren’t ready at all, so we want more time; lord, fill my sinuses full of froth, find me reason for another delay.


what we believe is God is in this; he’s in everything – the timing of this illness, the faith he rebuilt in us prior to the tragedy of death and the diagnosis, the delays, one after the other, pushing out the onset of this trial from autumn all the way into the fullness of spring.


God is in all the goodness we’ve experienced in this interim. he is in all the many memories we’ve made that i can labor to recall when the recollection of good times will be difficult but necessary for the bearing up beneath the bad.


but the hardest thing to keep in focus, the hardest thing to remember: God is in our tomorrows. we can imagine nearly everything about tomorrow, except God in it. but he is there as much as here; then as much as now, and he is today drawing us into tomorrow, and away from yesterday.


sentimentalism now just makes me sad. i love it so much. i don’t want to leave what i know. it is so good.


but the story is moving forward. it is not finished. and it is my faith in a storyteller who tells good stories (the one about the cross is the best) that gives me courage to turn my gaze from what he’s done in my life in my past (sentimentalism) onto what he is going to do in my future (attention to the present, the only point at which i make contact with my future, or God in it). God is doing a new thing, and that new thing leans forward. to get at it so must i. i don’t know what that new thing will be, but i know he’s going to do it, and i know it’s going to be good (i mentioned the empty grave?). the best is always yet to come.


the wide open spaces may lie beyond the hard stuff; the paths of righteousness may lead into the valley of the shadow of death, but the good shepherd leads us through, and the grass actually will be greener on the other side.


so, on into tomorrow, one weighty day at a time. he is good to those who wait.


on monday morning i’ll see my doctors and we’ll make the decision yet again, perhaps for the last time; if i’m adequately healing, my new insides (one of those two bags of cord blood) will come out of the cold and brought to a simmer, prepped for the transplant. then, no turning back without losing that match. i must be ready when it is.


i have a feeling we’ll get the green light this time. i can’t tell you how that feels.


or maybe i can. seems we’ve been here before: still sets my heart racing, still makes me a wee bit weak in the knees. or is that just the sensation of rising to me feet once more, bobbing and weaving, bob and weave, swinging me mitts, this way and that? (i liked the typo; me feet, me mitts; sounds irish… a good brawl… i could wish i were irish, but, better – i am inspired, by the spirit of the one who fought death, and won.)


so ring that bell.


and so help me God,





Categories: MDS | Tags: , , , , | 2 Comments

Mourning with the Mourning

there are days i feel more alive than ever. today is one of those days. i suddenly see everything as though the world were brand new, and i am a child rapt with wonder. i drive with my hand out the window, running my fingers over the contours of the sidewalk, feeling the shapes of trees and buildings, oncoming traffic, and somehow even the colors of every car i meet on my way to caribou, where i’ll be able today, without any trouble, to write the update that has resisted my efforts for two weeks running.


why today?


it wasn’t because i prayed more this morning. no, i wasted the early hours on my new ipad, given me by my siblings and their spouses, perhaps in lieu of their inability to give me bone marrow, though i doubt it; more likely just because they knew it’d make me happy, that’s all. something i wouldn’t have acquired myself; a gift; extravagant, unasked for, over the top; given that i might remember i am loved, by them and by a God who gives gifts of a greater kind; who surprises us with good unrequested, undeserved, spilling over, and frustratingly disconnected from any initiative of our own.




today i am taken by grace.


i am alive. last night at sundown i pedaled my bike through the streets of bloomtown to surprise my family at the boys’ school; in sneakers and a t-shirt no less, which is something worth cheering about in minnesota mid-march.


i sat on the sidewalk near the front doors, waiting, my bride and my boys inside with hundreds of other germy kids for the school’s spring carnival. i’d forgotten my cell phone, so i just sat there, breathing the sweet evening air, the sidewalk beneath me radiating heat retained from the afternoon sun; and i prayed for my boys on that sidewalk, and for their mom; the four people i love on this planet more than anyone else.


they were surprised to see me as they came through those doors a half hour later, and it was such a satisfaction to me; their faces were glowing. they were painted, too: a clown, a tiger, and a king. i threw my bike in the van and drove us home, making a quick stop at the grocery store for two more boxes of popsicles (a vice of mine…i down near two dozen a day).


once home, we cranked rebecca black, all of us singing: “yesterday was thursday, thursday / this day it is friday, friday / we, we, we, we so excited / we so excited / we gonna have a ball today” (at which point eli, our learned kindergartener, proudly pointed out that, without a verb, it made no sense at all. he was right, of course).


suddenly something shook loose inside me and i hollered through the house at the top of my lungs: “I don’t want to be sick!!! i like this me!!!”


overcome with frustration at the fact that this healthy me – this me that can bike across bloomtown to surprise my boys, throwing them over my shoulders, tossing them on the couch in a game of “smackdown,” spontaneously bursting into song with a joy contagious, bringing my whole family with me into the fun – this me, and the life that i can live with and for my family when i’m strong and not sick (after seven years of being unable to do anything but sleep in, i’d finally been able to rise early on a regular basis to bring our boys to school, so that jen could get up and go to school herself…and, just like that, after seven long years, our life was finally working…)


and this healthy me is heading to the altar once again, about to be brought low by the flint knife and fire of myeloablative chemotherapy and total body irradiation.


pardon any unintended disrespect for shiny happy responses to my pain, but if i may be so honest: this really stinks, and it’s much appreciated when you agree.


**warning**soapbox**  (grab your most gracious, unflappable self, for your sake and mine)


despite belief in a good God with good intentions – perhaps even because of it – some things deserve to be lamented aloud (or online), and before one should be compelled to rise and bless the lord, let him (and i say again: let him) cover himself in sackcloth and ashes, and then, with him, cry out: “how long, oh lord? how long will you hide your face from me?”


please don’t get me wrong, at present we hardly feel as though God were hiding his face from us. on the contrary, in ways beyond number we feel his presence now more than ever.


i merely (and ever so humbly) seek to press back against any conception of faith that insists the only proper response to one’s suffering is joyful resolve or serene acceptance. there are other ways a deep faith in a good God can be made manifest, and among them is the beautiful model in scripture (beautiful to those who suffer) of pouring out our complaints before God. the psalms are our biblical invitation to lament, and to lament together.


i’ve much else to say about lament, and much of what i’ve said can be read here, or heard here. all i wish to say at the moment is that from time to time i may post an update via facebook or twitter (tweets now displayed in the sidebar of my broken body blog) that will give voice to certain feelings portraying a faith that is anything but heroic.


i know i am not obliged, nor even expected, to have a faith so heroic at all times or even at all, but a request i humbly plead, for the sake of others who hurt if not my own, is that we who believe certain things do not obligate one who is suffering to express proper theology in all their utterances, or feel that we must correct them when they don’t. i suspect one can fully believe that God is good, and that he has good purposes for our pain, and still be allowed to say frankly something along the lines of “this really sucks.”


there may be doctrine that eventually needs to be corrected, there may be encouragement to immediately give, but often the wisest and most encouraging thing to say is simply: “yes it does.”


i am grateful to have many friends and family who do just this. thank you. thank you. thank you. you do my heart good.


we are tempted to fix what needs fixing, but we are exhorted to mourn with those who mourn.


i’ve heard this once unpacked in a pastoral call to let the words of one who suffers belong to the wind. let them belong to the wind. having grown up the son of a grain farmer, the picture i get from that is this:


back when the harvest was done by hand and the gathered stalks were beaten with sticks, the grain would fall to the threshing floor, and the rest would belong to the wind. it would blow away.


we can let the laments of the beaten be like chaff that is blown away. by letting those words be, by letting them go unaddressed and uncorrected (how job’s friends erred here), they are swept away by a breeze that removes them from the grain that remains.


and there is grain on the threshing floor: my convictions weigh more than my complaints.


i suspect the only proper way to understand my 140 character tweets, perhaps even to rightly read these posts on my blog, is to take them all as parts of the whole; to read what i write in the context of what i’ve written.


anyone just coming to my story now can take a shortcut through several years worth of blog posts by listening to this, or reading this, or simply by trusting i belong to solid christian men who, for my sake and yours, hold me to a high standard of biblical belief; who will correct me personally if i stray; who affirm my faith in the staples of christian doctrine and confirm for me that what we together believe is somehow fleshed out in my flesh; that it gets lived with my life.


all this, simply to draw attention to the fact that it is in the context of these things that i say the things i say; that my laments are, as are the laments of all others, firmly fixed in the context of a life; mine in the belief in a good God with good purposes and the might to make things happen; so that collectively, our complaints need not be a denial of those beliefs, but can actually serve as an affirmation of them: a real God who meets real people with real feelings in real pain; a sturdy God who can hold and handle our hard words about hard things; who invites honest responses, and is not threatened by them in any way.


that is all. i could say more. in many ways i already have (a worn soapbox of mine, one can tell). enough for now to be a reminder that when wounds are fresh, or made fresh by something or someone picking our scabs, our words belong to the wind, and we do one another a great respect when we simply let them go. to catch them or correct them is not just often unnecessary, it may hinder a heart hurting its way into holiness and health.


and please forgive me, at least for being so laid low at the altar of alliteration. i turn to see my tracks, saying the sentences i’ve spun into existence, and am ashamed to be so enslaved to such violent repetitions. someday i’ll grow up and grow out of it, maybe; once a good lutheran, always a good lutheran (i’ve got alliteration down pat, but not so good at keeping to three points; and perhaps it’s not so exclusively lutheran after all).


more than that, and quite seriously, forgive me for overreacting. i stop to examine more than my last sentences and i discern a sort of tartness i mean not to convey, and i haven’t the time to tidy things up more than i have at the time of this posting. but perhaps it can be a point on which to practice this grace for the gritty. perhaps you find no grit to forgive; minnesota nice has been known to be overly-sensitive; perhaps i’m overly-sensitive to my over-sensitivity; in any case, i mean not to nurture any reluctance to respond to my updates. if i am easily offended, that is my issue, not yours, and occasionally i can be a big boy about it. please comment freely. it does me good to know who’s out there, tuning in so to speak. your mere presence encourages me greatly.


finally, i should probably ask that you resist the urge to comb through my recent facebook interactions looking for smoking guns. there really aren’t any, at least none that would warrant the reaction here. i am as much reacting to the awful stories that accumulate over the years of well-intended but hurtful replies to the expressed pain of those who mourn, who, more than anything else, just needed a shoulder to cry on. those shoulders should be found nowhere more abundant and hospitable than in the church, where the heritage of communal lament is so rich, and yet how we fail. i hope we are bettered by my little soapbox. it unfortunately infers bad guys and a stoning in the town square, but we’ve all been the bad guys. i’m not talking about you or him or her, i’m talking about us; so we can drop the rocks and get about giving one another grace for the gritty.


and if you’ve read this much, you’ve given that to me. so with my utmost gratitude:


thank you.


much grace to you,






Categories: Cancer, MDS | Tags: , , , | 4 Comments

Death, the Possible

so my most recent biopsy results revealed a disease holding steady. no progression, but still there, evidenced by deformities in the cells my marrow produced. the chromosomal study is still pending, but isn’t expected to show anything different from my october biopsy, as the cell dysplasia (funny-looking-ness) is the tell-tale sign of that rogue chromosome still at work.


my blasts (immature cells) have decreased, not significantly, but enough that the extra induction round of chemo (prior to the transplant chemo) will not be required. this is good news, as it means my body going into the transplant will be in much better shape than it would’ve been after the induction.


the surprise in all this, was that the transplant team at the U, instead of taking me for the transplant work-up this week, said they wanted me to do another cycle of the mild chemo i’ve been doing these past two months first. that includes this week of injections, and three weeks lag time for maximum efficacy. and that means that i get another month at home before it’s go-time at the U.


breathing easier now. we needed this extra time. one would think we’d be ready, given the time we’ve been granted already, but no, we weren’t.


these past few months have felt more like a vacation, me being so healthy, life feeling so normal. and with much to celebrate: birthdays, christmas, new years, our ten-year anniversary. jen turned thirty on saturday, a somber celebration in some respects. nonetheless, the possibility of it all coming to a close this week was a little jarring. believe it or not, we weren’t prepared.


on some levels we were, but not across the board. these extra weeks don’t have the aura of vacation anymore. it’s all preparation. the final descent.


so on we go, grateful for the extra time, the breathing room.


everything has a certain intentionality to it. i’m recording myself reading my favorite scripture passages for my boys, telling my stories, too, with a digital recorder and its little red light; we’re painting the room in which i’ll spend most of my home-time post-transplant, complete with a writing desk, a comfy reading chair, and a bed; i’m in the studio, tracking rough cuts of songs i’ve written but never recorded; we’re writing wills; we’re writing updates.


perhaps you sense in those preparations a long-term vision that looks in two directions at once. it does, because we must. perhaps i can unpack that here.


we’re given statistics to account for the possibilities inherent in a transplant such as this. i’ve mentioned these numbers before, stacked against me, but just barely. here’s what i mean:


there are two stats in particular that have caught our attention. one is in regards to the effectuality of the transplant as a cure for my MDS: 40 percent; there is a 40 percent chance that this will work. the other is in regards to the potential lethality of the transplant itself: the odds are 1 in 5 that complications will arise that will do me in.


imagine you were told one morning that if you walked out your door there would be a 1 in 5 chance you wouldn’t return. would you leave?


of course, in my case there is a killer in the kitchen that’ll get around to me eventually if i stay. and he may leave the house while i’m gone.


there are a variety of transplants, each with their own risks; each with their own set of numbers. mine happens to come with numbers like these.


there are those who would be quick to point out the 80% chance that i’ll make it. i, too, want to go there, but not so fast. here’s why:


because death is very real. it is especially so for us right now. with jen’s dad’s sudden passing this past fall, and not just his passing but the brutality of it; with the slow and painful death of the mother of one of our closest friends fresh in our minds, our boys especially deserve the chance to be prepared for every possibility, including this one.


another good friend, one who lost his mom to cancer when he was seven, wisely asked me what the one thing would be that i’d want my boys to know going into this. i answered, in retrospect, i would want them to know that my death did not take me by surprise. he said, yes, with tears, that’s it. that’s what made the difference for him.


he who passes over the opportunity to prepare for his own death, for himself and for his family, wastes a remarkable opportunity to connect the dotted lines between this life and the next. i will not waste this opportunity.


death is always a possibility. always and for each of us. and it must be looked squarely in the face as our own if it is to be rightly seen at all. the christian philosopher peter kreeft writes an excellent book on this, “Love Is Stronger Than Death.” i am only half way through with it, as it is one to be digested slowly, over time, and i’ve not had the time to read it in order to do that well. but i am certain he is leading me in a good direction, the progression from death as enemy to death as lover, through the faces of stranger, friend, and mother… too much to go into in the moment, but worthy of anyone’s time who is seeking better to understand the end to every life (including your own) short of Christ’s return. i highly recommend it.


in any case, how do we go about preparing our boys for that?


we’ve received good counsel, i believe, and it is at its simplest, this: fan into flame the kind of faith that believes God is God, God is good, He is in control, and He can be trusted to be with us everyday and always, even to the end of the age.


there is more, of course: crystallizing an understanding of the afterlife that is more alive than this life, directing their gaze to the resurrection of the dead and the age to come; of lions lying down with lambs, trees that forever bear fruit along streams that never cease to flow, brand new bodies that eat, hug, laugh, play, and possibly walk through walls.


but even all this is contingent upon the first, upon God’s goodness and upon God’s God-ness. His promises are moot if these attributes be not his.


so this is where we seek to guide their little minds: to nestle in the exhortation of isaiah 41, simply, do not be afraid.


my mind to, needs this kind of guidance. to fan into flame in my own heart the kind of faith we seek to instill in theirs. to be able to entrust my family and their care to the provision and the presence of God, with or without me. this is no small thing.


i’ve been there before. i remember. i couldn’t do it then.


one can be mindful of the fact that we’re no strangers to this kind of suffering. it was the same in another season that gave rise to the cause of this one. the cause of this cancer being the cure of another. say what you will about the ill-effects of such a cure, i’ll point out it still saved my life, gave me another seven years in which to live.


in any case, we remember, though not with the clarity that present suffering affords, the depths to which our human hearts can descend. we remember just how evil the evils that befall us can be. we are, none of us, guaranteed to be spared the full effects of the fall. we deceive ourselves if we think otherwise, and render our hearts floppy and unprepared should such evils be ours to bear.


should we refuse it our attention because it is not fair? because i’m young? because i am dad to three young boys?


a young father from my hometown, a divorcee, died of cancer leaving five children behind. death is not fair.


hebrews eleven, the often referenced christian “hall of faith” itself allows that “some were sawed in two.” a faith that doesn’t reckon with such a possibility will be a faith unprepared in the face of such an eventuality. it is, after all, the faith that survives such a fate that is being paraded in this hall of faith. that is a sober faith, indeed.


so we have sought in recent weeks to think on these things. and there is more thinking to be done. but we are ready, too, to move into a more hopeful disposition.


we think ourselves hopeful realists, not given to denial or despair, but rather committed to what paul miller calls the desert way: hoping for the best while living in light of what is. we interact with what’s real. we hope for what is not yet.


some might think our dwelling on the possibility of death a capitulation of faith, a downer to the aims of positive thinking. we think it right and proper. and difficult as all hell. it’s not much fun, either.


but it is there as a number on a page, a possibility that must be considered if it is not to be an opportunity wasted.


so do we say to our boys that daddy could die? we do not. but do we guarantee them that i’ll be okay? we don’t do that either.


we simply remind them that God is God, He is good, and He is with us always.


they know death is possible. they know what death is. no need to nurture an anxiety they don’t already have. rather, we speak plainly to the anxiety that is, and we say:


do not be afraid.


be sad. be prayerful. but do not be afraid.


then we bless them and put them to bed, and go to sleep ourselves saying the same thing over and over again.


do not be afraid.


there is, of course, an 80 percent chance that i’ll be okay; that i’ll be around for their next birthdays, an eleven-year anniversary.


good. we will hope for that, and better things too.


but we will not pass up the opportunity to see life in a whole new way. and if our faith be shaken, let what can be shaken be shaken. we can only start with what is. i’d rather know the little faith i really have is solid, than merely hope the great faith i hope i have is real.


God has been good to me in that regard, and i can honestly claim no great faith.


but i know the little faith that is there is really there.


and for that i can only say, thank God.


entrusting you with an unedited rant,


please be kind,


i am


his with you,











Categories: Cancer, MDS | Tags: , , , , , | 10 Comments

My Plan to Post

ever had a dream in which you’re trying to say something really important, something that needs to be said yesterday, for someone who’s waiting eagerly to hear it, and you’ve either lost your voice completely or simply can’t find the words?

this post has been long in coming, for many reasons, and there’s much to say, so, for those of you in a hurry, i’ll put the medical stuff up front, and save the rest (how i intend to write and post updates and such) for the main body of the post.

i had another bone marrow biopsy yesterday. the one that’ll determine when and how (and i suppose even IF) this whole thing will happen.

two things they’re looking for:

1)   that rogue chromosome. is it still there? has it made friends, started an uprising, a revolution? are there turncoats all over? or has it, by some miraculous intervention, changed its miniscule but remarkably consequential mind?

2)   the percentage of blasts in my blood. in the case that this rogue chromosome is still at work, there will be a certain number of immature blood cells in my marrow, for not only does the rogue suppress the production of healthy cells, it also releases botched cells into my bloodstream. these are called blasts.

my last biopsy revealed 6% blasts. the number has to be below 5 for the U to take me (the lower the number the better the odds for a rejection-free transplant), so it is my long-term cancer care team that is responsible for getting that number to where it needs to be.

the mild chemotherapy they’ve administered in the past two months has the capacity for knocking that number down, but not often in such a short period of time. if the percentage is too great, i will be required to do a week of intense chemotherapy (an induction round) as an inpatient at regions hospital, with another 2 to 3 weeks of recovery time at home before beginning the work-up week at the U.

if what we’ve done so far has worked, i could be meeting with the U of M transplant doctors by the end of next week, my work up week beginning as soon as one week from this coming monday.

too soon.

the results of should be ours sometime early next week. i am meeting with an oncologist on monday. once we know what there is to know, i will pass it along to you.

i have said that i would write an update detailing how we feel about all that is upon us here and now; about my illness and its treatment, about my father-in-law’s passing, about the possibility of death for me, and the hope for healing either here or hereafter.

i’ve begun several drafts of this, with every intention of fully describing the complexity of all our mental and emotional responses to the circumstances at hand.

and rightly, i’ve questioned my ability to adequately do so. this past month has been rich with activity, a christmas better than, if not much like many before: the getting and giving of gifts, good memories made, sicknesses avoided…difficult conversations set aside for times more appropriate for the weightiness due them.

but those more appropriate times rarely came. those difficult conversations, rarely had. life has been so normal, so good. and the thought of what might lie ahead for us, of what doctors say is mine to endure, seems so distant and so unnecessary as to be nearly inaccessible to my contented mind.

yet there have been glimpses, rare moments when i’ve been able to peer into this other world – the world of crazy counts, cancer, a stem cell transplant – when i’ve been able to think clearly about all that it brings to bear, and i’ve been utterly paralyzed by the sheer volume of what i’d want to write about, and the absurd number of words required to say all i want to say.

it’s not that there are rules for this sort of thing. but there are expectations i’ve raised by saying i would do something i have not yet done. i must scale back my ambitions a bit. and instead of writing what would be the book required to sufficiently explore all our thoughts and responses to my illness, i will do so more on a thought by thought basis, setting out, when i sit down to write, to cover one particular thought per post.

in short, I intend to write less and post more, and if i do not find the time or the ambition to cover something i now intend to, so be it. my word on any given day is far from the last word on any of it anyway.

so with that, among the things i hope to address:

~ our initial reactions to the diagnosis

~ our familiarity with the difficulties of chemotherapy

~ our thoughts on prayer and the hope for healing

~ our theology of suffering

~ our take on western modern medicine

~ our approach to alternative therapies

~ the possibility of death

~ our parenting of our boys in this season

~ our needs and how you might meet them

and our appreciation of the community that has gathered around us in this time.

so, spelling it out so plainly, i am again struck dumb by the scope of what i hope to cover. really? who wouldn’t be intimidated? and why does what i think about hope and suffering matter anyway? what could i say that hasn’t been said before?

all i know, is that God is telling a story with my life just like he’s telling a story with yours. my friend ben says we’re made to know and be known; God, and by God; others, and by others. similarly, we read to understand, and we write to be understood. sometimes we write to understand, too.

it helps me understand, writing does. and it seems to help some of you to read it too. i’m under no illusion that i’ll get it right all the time, and i pray you’re with me on that. and i’m under no illusion that you’ll all agree with me all the time either.

i have the remarkable honor of knowing believers and skeptics across a wide spectrum of beliefs relative to the topics mentioned above. i personally find it exhausting to disagree, though i know it cannot be avoided. what i can do is share with you my heart and mind, and to a certain extent, why it is that i think the way i do. and i hope it may be obvious to many of you that i am not all that original, at least not in the sense of thinking something new. others have thought these thoughts before me, and their words have funneled me into the groove in which my mind now moves. and i do expect to meet some of you there.

and i hope in weeks to come that you’ll hear from me more often. my intent is to use the existing blogs on my website ( in this manner:

“a broken body blog” will pick up where my most recent updates have left off, with the “how we feel” about things commentary, the longer “life gets rearranged (part 2 of 3)” that’s been promised, broken up into smaller pieces. essentially the thoughts and reactions hinted at in this post. then the blog will eventually shift into ongoing updates regarding my illness and its treatment, and the various thoughts and struggles that arise because of it. i intend to post here (“a broken body blog”) roughly once a week.

my more deliberate writing (and i hope more thoughtful) will be reserved for “a musing blog” also on my website. many of you know i’ve for years intended to write a book, specifically a theology of suffering in conversational language. i’m wondering whether i couldn’t use this blog for that purpose, writing the book there in bite-sized chunks, again posting weekly, the two blogs rotating through my mental field of vision on a regular basis. it could be a good book-writing arrangement, your thoughts and comments fine-tuning what i am trying to say.

(there is also a music blog on my website, where i hope to offer the occasional post highlighting new music and/or videos and such, as i am able.)

my impression is that to be a blue ribbon blogger one must regularly respond to comments and such. for what it’s worth, i may not be a blue ribbon blogger.

i will most often have to leave the conversation in the hands of my readers, for it typically requires of me all the key-tapping, butt-parking, and brain space i can muster just to post what i do. (some might say i have other things to tend to too). your grace for my silence would be much appreciated.

your presence in this (i consider your reading an act of caring) matters much to me.

i am reminded too, that all this writing, it is not for nothing. i write for people who care, and for many who turn these posts into prayer.

and as one who believes there is a God, good and strong, who hears and responds to every one of those prayers, i can’t help but think…

who wouldn’t want that?

so, on to that next post.

gratefully surrounded by people who care, i am

yours and his,


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Categories: Cancer, MDS | Tags: , , , | 8 Comments

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