Posts Tagged With: Lament

This Blast Business

closing in on six months now, still no transplant, so where are we?

quick rewind:

when i was diagnosed late october, and my oncologist of seven years handed me over to doctors at the U, the plan was to hit the ground running, to do the transplant as soon as possible. first, an intense round of chemo prior to the chemo for transplant was required to reduce the number of blasts in my blood.

my marrow, broken by what saved my life seven years before, was putting forth these stillborn blood cells that increased the risk of complications during transplant, therefore any more than 5% blasts made one ineligible for it. mine held nearly 6.

so an additional round prior to transplant.

but we asked for a plan B, anything to buy us a little time to grieve the recent loss of jen’s dad.

plan B was three passes of a one-week-a-month mild chemotherapy, given in a shot to each arm daily for five days straight (mild to the body perhaps, but not so much the pocketbook: 25 franklins per shot, ten shots per week, for three weeks – seems we’re on for roughly 5% of that).

the hope was that this chemo would calm the disease and keep the monster it is behaving more like bruce banner than the hulk it could become. so far so good.

it was also possible that this milder chemo would reduce my blasts a bit, maybe enough to make that extra round unnecessary.

in this respect, things went better than expected.

as it turns out, some effects of that chemo are slow in coming. when we biopsied my marrow early march, my blasts had reduced to just less than 5%. good. no additional round necessary.

it’s been nearly six weeks since i finished my workup. we’ve been on standby ever since, scheduled and rescheduled many times over. last week, i did a repeat biopsy (went much, much better than the last), and my blasts pretty much disappeared.

that is good news. it does not change things much, except for the risk factor going in, which is significantly reduced, and that’s a big deal.

so, that’s the bit about my blasts.

but one more thing might be said about this whole blast business: i needed that extra month. we could have started the transplant when we intended, and i’d have gone in with nearly 5% blasts, right on the brink of it being too dangerous to do.

however, on account of the delays – concerns about my sinuses, my root canal, the flu – enough time has been allowed for that milder chemo to do its thing, and i will now, more than likely, go into the transplant in a much safer state.

hmm.

that’s all i’m saying for now. except maybe to mention there a lot of people praying for me; praying for a me who fusses and complains about a day seeming like a thousand years.

i will champion lament until the day i die.

but i will also celebrate a God who answers the prayers of his complaining people, loving even, perhaps especially, those who complain to him, coaxing them into better places, better dispositions, states of mind and body more suited for the trials appointed them.

with each delay, i have crossed one more monumental task off my ever shrinking list of things i hoped to have done before transplant, things that five weeks ago loomed over me like the unfinished works they were.

amazing how it all works out.

it doesn’t have to; it doesn’t have to make sense this side of dying. nowhere is it promised that our disappointments will be woven together in such a way that it will make sense to us in this life. for most things, we will need a different perspective, we will need to step out of it to see it rightly.

but occasionally it does work out and occasionally it does make sense, and not necessarily in huge all-satisfying resolutions that sweep over us like waves from the sea, carrying away our pain and disappointment, sufficient to abolish all doubt; but in small, nonetheless satisfying ways, like hints of a grand intention; a larger story whose plotlines we shall one day see.

hints of this sort help us hope; hope that the mess will make sense in the end.

they say that there is a way in which the human brain cannot bear disorder, so it instinctually overlays disorder with order, making connections where there are none until the disorder is ordered, and therefore makes sense.

i get this, it is, in a way, how we learn; but might it be more?

could it be a kind of mechanism by which we see God at work in the world? a sort of sense for discerning fragments of the woven story all history really is? a means by which we glimpse hints of a grand design in an otherwise random, purposeless mess?

i would encourage those who don’t believe such things to understand that it is this for many of us. it is faith that affords the view, to be sure, and i know it often seems like a stretch. i understand the difficulty in accepting such calculations as any thing more than inferences of our own making, for i have a very good friend who sees more connections in a day than i do in a year, and i am prone to be skeptical about it. but then i remember that connections that seem so obvious to me present equal challenges for others.

and i understand all the complex arguments that arise at the suggestion that there is a personal intent to all that happens, for not all that happens is good; i understand that point very well, and i do not intend to satisfy all the many contradictions here.

i mean only to say that the five weeks of waiting i’ve been grumbling about all along turned out to be not so bad for me after all.

but i guess i’ve said more than that, too. i do that sometimes. my apologies.

on a lighter note, i realize i haven’t been all that consistent in posting these past five months, that those i’ve posted have been few and far between. i suppose there’s a possibility this might change once i’m in the thick of things.

facebook and twitter are my primary ways of communicating moment by moment updates, even those more day by day. my five most recent tweets will be posted on the sidebar of this page, but even if you’re not a tweeter (what do they call us on twitter? twits?), you can view all updates at www.twitter.com/jeremyjerickson

we also have started a caring bridge page that stands a chance at being more consistent than this, for it will be more jen’s ship than mine, allowing her an easy way of posting during those stretches of time in which i’m unmoved or unable. she’ll link to my posts here, and i may write something there occasionally, too. it’s a public page, and though there’s not much there yet, can be found here: www.caringbridge.com/visit/jeremyerickson

i go into the U clinic tomorrow morning for a final look-see. a swab earlier this week confirmed that influenza A is no longer a problem. a CT of my sinuses showed them clearing up just fine. if nothing comes up tomorrow, i’m finally good to go, and all we’re waiting on is a bed.

this part of it, like so much of it, is out of my hands. i have a coordinator at the U who’s promised to make things happen. once she sees an open bed one week out, she’ll call the lab to prep one of my cord blood units, my admission date will be set in stone, and i’ll enter the hospital exactly one week after that.

in the interim, it’s house arrest. i become a hypochondriac, love my boys from across the room, pack my bags, and count the days.

and i’ll wish a day really were a thousand years.

waiting with you,

jeremy

 

btw, men in my life have given/done a variety of things to have me know they’re in this with me; my friend mark made me a song, and i love it. a man needs men to be strong; here’s one of mine:

http://soundcloud.com/mgkvsbrd/02-blood

 

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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.

 

grace.

 

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,

 

jeremy

 

 

 

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

Life, the Likely

the reports of my death are greatly exaggerated. so said mark twain upon learning his obituary had been erroneously printed in the new york journal (he hadn’t died, if it must be said), and so say i, upon hearing of distant acquaintances who’ve spoken as though my death is imminent and inevitable.

 

it is not.

 

i can readily understand how one could come to such a dire conclusion by a casual perusal of my recent posts. “death, the possible” two times over, if taken as the whole of all there is to my story, could certainly lead one to believe that i am indeed walking into my grave.

 

but it is not the whole of my story.

 

i have very deliberately sat with the possibility of death longer than what most deem comfortable and perhaps longer than what some deem right. there seem to be a few following my story for whom the only way to approach this thing is to banish all thought of death and bank on me making it through it all unharmed.

 

for some this issues from a genuine hope for me, a severe hatred of all things evil, and a deep faith in the goodwill of God.

 

thank you.

 

but i wonder if it’s not for a few something like the proverbial whistling in the dark – a denial of the death that comes to each of us eventually; a radical discomfort with the thought of God allowing something as unfair and as tragic as the death of a young dad leaving three boys (whose grandpa just died) and a bride (whose dad just died) in a space made emptier and much sadder by his leaving.

 

i don’t know. i do know that it is one thing to read of women who by faith receive back their dead; it is another to read of those who for faith were sawed in two.

 

and i know that to reckon with the possibility of death, the inevitability of it, not just any death, but your own, is something like seeing smoke drifting out from behind the curtain between you and the holy of holies. it is something like knowing the shekinah glory of God is just around the corner.

 

a terrifying, sacred space.

 

a moment altogether outside of time.

 

hold the hallelujahs and cue holy, holy, holy. the writer of that letter to the hebrews, after jesus had revealed the heart of the father, still says we come to a mountain that smokes; that our God is a consuming fire.

 

he is good, but he is not tame.

 

i mention the possibility of death again and again not to be morbid. i’m as eager as anyone to hope for and uphold a more optimistic outcome. i merely aim to pull back the reins on an unnecessary rush through a somber and sacred process, one that can conclude with a glimpse of God so satisfying and strengthening as to make it possible to pass through the valley of the shadow with faith intact.

 

i would not want to rush others through their laments who in lamenting may see God in a way that strengthens faith and endows the ability to suffer well. i pray you would want the same for me.

 

jen and i have cried and grieved and come out the other end with fresh resolve and a sober but hopeful anticipation of the days to come. i have cried twenty minutes with my eight-year-old crying on my lap. together we’ve experienced God in the midst of our grief in ways so intimate and weighty, that we have renewed confidence in the presence and plan and purpose of God in our pain.

 

if there is an open meadow anywhere in this forest through which we travail; an opening in the trees through which we can see the stars in the sky; a space in which our souls can breathe and resolve to walk in, through, and out of the darkness that surrounds us, it will lie along the “dimly lit path” of lament (m card), and nothing calls forth lament like facing down your own death in the light (light?) of leaving the ones you love.

 

so, i think, my point being plain, i will conclude my rant.

 

and i can end here with this: while my work preparing for the possible is not finished, and while i feel the weight of this approaching season now more than ever, i am nonetheless ready to round the corner into a more hopeful tack.

 

for not only is it quite possible i’ll live through this, it’s also most likely that i will.

 

 

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

Workup Week

i begin my workup week monday. prior to every bone marrow transplant it is necessary that each patient gets the equivalent of a medical pat down. it involves bloodwork, xrays, ct scans, and a bone marrow biopsy. transplant doctors at the U of M will examine my heart, liver, kidneys, and lungs; they’ll run a whole cascade of blood tests; and they’ll bank their own results from a biopsy of my marrow, to be sure i both need, and am fit for the remodel of my life.

 

they won’t tear the house down ‘til they know it’s condemned.

 

important, too, to be sure the foundation can bear the remodel. the demolition is not a delicate process. my organs must be fit to bear a beating. there is an ever-so-slight possibility we could reach the end of next week and hear: we are very sorry, but we cannot in good conscience give you a transplant at this time.

 

tick, tock.

 

two years.

 

that is, however, not very likely.

 

what’s more likely is that on thursday, at the final of my many consultations, i’ll be given a date (or possible dates) for an admission sometime in the next few weeks.

 

then i’ll pack my bags, and pray that i don’t get sick.

 

speaking of which, i have a cold.

 

after four months of near perfect health (i suppose a weekend trip to the ER for a flu does mar the record), i have come down with a cold. and that, at the eleventh hour.

 

my counts rebounded splendidly from the chemo. actually, it was these three months of chemo that facilitated the rebound. my white blood counts never went down, they actually went up. this was what was hoped for, but hardly expected. in any case, i now have the strongest immune system i’ve had at anytime in the past four years.

 

at least my numbers are up.

 

a lingering bug can turn into a monster once the house comes down. the seven days of chemotherapy and radiation prior to the transplant will wipe out my immune system entirely, and after the transplant, daily high dose steroids will continue to suppress it until the incoming stem cells firmly take hold.

 

i don’t want to go into this with a bug in the walls.

 

it is thus far a mild cold, but it is a cold nonetheless, and it’s got to go.

 

i wish i were in better shape. i’ve felt a moral obligation going into this to be as fit as possible, for the sake of a better outcome, for the sake of my family. but i’d rather write than work my body, and it takes a move of the spirit for my mind to relinquish its privileged place for the sake of a trip to the gym, and there has been a great deal to write about.

 

i know it hasn’t necessarily appeared here, but there are other things. other very hard, but important things.

 

those of you who’ve been following me on facebook know i’ve been attempting to write my boys a letter to be read in the case of my death. this is not easy.

 

this is not to say that such is where this whole thing is going. we do not know that. i’ve said it before, but the odds are in favor of me coming through this thing alive (though the odds are barely not in favor of it curing the disease).

 

really? then why all this talk about death? why does it so often sound like i’m giving myself to the grave?

 

because it’s possible. and it is the hardest thing to truly keep in focus. i can feel it on a sentimental level, and it is very sad. but when i feel it truly, it is unbearable and i look away. i can talk about it, but can i dwell on it? can i be as “one acquainted with grief?” can i sit with the sorrow long enough to see what i need to see?

 

and what do i need to see?

 

among other things, what i mostly need to see is hope. i need to see hope in the shadow of death. i need to see the shadow, to dwell in the shadow, long enough to see the hope of the gospel for what it is: really good news.

 

i want to stare into this darkness long enough to see the light breaking through from the other side. and, what’s more, and no doubt more difficult, i need to see the light shining on this side. light for my boys. and for my bride.

 

i want to go into this with the kind of hope that truly trusts God with my family, and sitting with this sorrow, in the shadow, reading the word as i wrestle with words with which to comfort my boys if i die; this is how i am trying to find it. this is how i am hoping to forge such a hope; in the furnace of affliction; in the fire of what is real.

 

a word of hope that comes too soon is not hope, it is sentimentality. this is why to truly comfort someone is to sit with them in their sorrows first. if they are at the bottom of a well and you don’t climb in there with them, your words will feel like rocks dropped on their heads. but if you climb down there to where they are, you just might bring them the ladder upon which you both may ascend.

 

a little flame with me in the pit will do so much more than the bright sky far above me, up there, where you are. so, please, bring the fire down.

 

(oh, and know that it cannot be your pit, your pain, it must be mine. i am down here.)

 

not that i have an opinion in the matter, but if i do, it is truly not first for me. i am fine. but there are many who do not have the care i do. i pray my words help you help them. go to them where they are, sit with them in their sorrow, as uncomfortable as it is; then will the little flame that survived your descent shine most brightly.

 

the light is brightest in the darkest dark. i want to carry that light in my heart for the dark days before me.

 

this is why i have been a graveyard dweller, if not a bit of a downer these past months. but i am ready to round the corner. i am ready to lift my eyes. i am ready to set my face towards jerusalem as my master did so many years ago – for the joy set before him, out in front of him, on the other side of his cross.

 

i say i am ready, but no, i am not ready. i am eager.

 

there is a difference.

 

can i be ready?

 

i am not finished writing my boys. i have not given much thought to my funeral.

 

and i wonder, have i sat in that shadow long enough, and stared even longer into that light from which darkness, however dark, must always flee? have i the hope inside me for which i seek?

 

i do not know.

 

i have a hope. it does not feel as stout as i’d like it to.

 

late at night when the kids are in bed, my wife is sleeping and the lights are out, i falter and feel the dread of the days ahead, and my heart fails. on account of my imagination, my breath shortens, my pulse quickens, and i want to cry.

 

but, i remind myself, this only makes sense: God gives grace enough for today, and if the day I am imagining is not the day in which I am, the grace I have will not be enough for it, for it is not today.

 

so i pray, take my sleep meds, and try to think of something else.

 

grateful to know i’m not the only one praying, i am

 

his with you,

 

jeremy

 

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

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