the day has come: monday morning (4/23), i will rise from my bed, kiss my bride, brush my teeth (in that order), and send my boys to school, all for the last time, as the original me. this neatly knit package of protons and neutrons, this delicate dance of DNA, is coming undone. literally the core of who i am as a body (i do not merely have a body, i am a body) is broken, barely holding up against the effects of the fall of man.

we cannot live this way forever. we wouldn’t want to. our efforts to subvert the brokenness in ourselves are themselves broken, imperfect. it was the cure for one disease that was the cause of the other, and this other one will do me in; it will kill me; unless i am made brand new.

so jeremy 2.0 is in the works.

this past monday (4/16), technicians at the U took from the freezer one of two soon-to-be-mine cord-blood units, and they’ve been stirring it up, prepping the stem-cells since, propagating them for MY transplant with a “first-in-human” trial compound, made and paid for by Novartis.

my admission monday will be just a day short of six months from the first sign of my disease – when my counts crashed and i came in exhausted, beset by a virus i couldn’t fend off with my own white cells.

because i hardly had any.

this thing we’re going into; this hematopoietic allogeneic myeloablative transplant – specifically the myeloablative part – is a big deal. there are significant risks. a more common word that carries the same implications as myeloablative would be helpful here, and it is good for us that we have one, and kind of quirky that it sounds so similar:

obliteration.

the old me, my old marrow, must die; it must be completely wiped out; it must be obliterated. the disease isn’t upon my marrow, it’s not even in it; the disease is my marrow, or better: my marrow is the disease.

the core of me is treasonous. it has turned on the rest of me in an act of self-sabotage. but don’t i look good? didn’t my counts rebound? recent blood work has revealed the disease is reasserting itself, and my counts are once again receding. this will kill me if left unaddressed, and quickly.

i’m not trying to give myself a pep talk.

or maybe i am. it’s hard to do what i am about to do. yes, people do it. we know those who have. yes, people live through it, and my odds aren’t that bad (when odds are against us, what do we say: what do the odds matter? right?).

but i needed to remind myself that this whole thing – and i remember what it’s like being sick; i quake at the recollection of it; cower in anticipation – this whole thing is to save my life, not to put it at risk.

i needed six months to get that. God, thank you for the delays.

now, on with the blasted thing. where’s my cross?

my first day at the U, i get my central line placed; a catheter with two ports that leads directly into an artery just above my heart. within a few hours of installing my “pipes” they will be used to administer the first of three days of high dose chemotherapy.

three days, and only two chemos: fludarabine and cytoxan (changing the i to an a in cytoxan does not hide the fact that it is what it is: a toxin, and nasty). i had nine different chemo drugs years ago, cytoxan was one of them; and i had them in high doses. fludarabine is new, but the two of them together, for three days, will be enough, because they will be given in such high doses (please be praying against nausea. i hate nausea).

my old me will be laid low, my marrow unable to make new cells. a day of rest after those three is written into the schedule. one day to honor the passing of the old me.

for some transplants, the transplant happens here, or after another few days of chemo. for an obliterating, i mean, myeloablative transplant, there are four more days of . . . preparation.

on day five, i begin four days of total body irradiation, where, twice a day, they’ll set me up in a big microwave (i can watch DVDs), set the timer for 30 minutes, and give me the equivalent of a trip to the outer atmosphere, without a space suit. i think i will try to imagine it as basking in the penetrating light of the sun from somewhere on the far side of mercury. or, perhaps, sitting in the shekinah glory of God, exposing and obliterating any evil in me, burning it away like chaff, or dross in the refiner’s fire. the crucible. this is the crucible.

ah, all to be sure the old me is as good as gone.

please sit with me with that for a moment; my insides, my core, my marrow for 36 years, done.

totally helpless now. at the mercy of God. no different from any day, i guess; but it’s hard to imagine as i write this. my life will then depend on two little bags of cord blood, and the brand new stem cells in them, brimming with life, ready to build a brand new me from the inside out.

either they do exactly that, or they don’t.

(now you know how to pray)

if God wills, i will have a new birthday on the first of may.

it could be said i’ll have another on the second, as i receive the second unit of cord-blood on the next day. the first? or the second? one doctor told me it may take six months to decide; by then we should know which unit, which DNA, “took.”

throughout this time, and for several weeks beyond the transplant, i’ll have no immune system; and then for months afterwards, i’ll have a baby immune system (i’ll actually have to get all my immunizations over again, ah, the controversy). i will be susceptible to infections, and i have been told i will for sure spike a fever. our prayers then are that the prophylactic measures taken to head off the worst of the infections would be effective, and that those i do get would be of the milder sort, not attacking my lungs or my heart, and quickly resolved.

i share these requests for prayer aware of the fact that God is not a vendor. he’s not a computer we program with our prayers to do certain things. we believe he is a person, he’s involved; he’s a king, and he reigns; he’s a storyteller, and he’s telling a story with our lives; making stories of each of our lives, and for each other; lives and persons and stories that are meant to communicate something of his heart and nature to everyone else.

so many of you have given me an angle from which to see God that would’ve been unknown to me if not for you; in that letter you wrote, your status updates, that meal you made, that check you sent, that year at school, that night i stayed at your place, that book you told me about, that movie, that music, that dinner we shared, that concert you gave, that story you told, your face, your laughter, your questions, your mind, your marriage, your art, your humor, your life, your work, your success, your comeback/recovery, your family, your home, parenting, gardening, your love for peace, for the God who sees us, your love for me, and your love for Jesus.

and thank you for being a part of our story now; in being there, “out there,” somewhere; because somehow, sometimes, out there feels like right here.

many of you have asked over the past six months how you can help; how you can be more present to us in this time. forgive our silence on this matter. we’ve given it much thought, holding off in the knowledge that there’d come a time when we’d need your help more desperately then we did then. that time is now.

more than anything else, we will continually need your prayers. for those of you in the practice of praying, and for those who perhaps, like me, want occasion to practice, i cannot say enough how your prayers on our behalf make a difference in our being able to bear up under the weight of these difficult days.

the strain is significant. but it is remarkable how the mere knowledge of prayers being prayed changes how we feel, not so much the how, but the how much, of whatever it is we’re feeling. it’s the intensity that gets dialed down, just by knowing we are being prayed for.

your one-word responses to my tweets and status updates, praying or praying right now, dial down our anxiety, for we are surrounded by men and angels who hold us up before God in a continual plea for his intervening work, and God always responds to the prayers of his people.

intercessors, lamenters, doubting toms, and faith-filled people: there are a great many ways to pray for us, and there are a great many people praying, but don’t think for a moment that your prayers are any less important because of it. in fact, if you think your prayers are less important (perhaps because you doubt they’ll make a difference), they’re probably exactly the prayers God is prompting you to pray. so please, pray for me and my family, each in your own way.

lastly, pertaining to prayer, we need your kids praying for our kids, and we need our kids to know about it. it does our boys a great deal of good to know there are other kids praying for them. we know this because a few of you have had your kids communicate as much to them, and they are braver for it. they’re not alone.

so, however you want to go about that, the sum of it is this: continue to let us know that you’re praying for us, and pray as though your prayers really matter. because they do.

now finally, if you’ve been wanting and waiting to find out what we need practically, here are the details:

1) finances: a quick glimpse at the setting would be good. i’ve no doubt there are some of you who wonder how we pay our bills to begin with, knowing of no particular job now held by either of us.

since roughly the time of my first cancer, we’ve had essentially four avenues of provision: social security/disability, a private benefactor/patron, other ministry income/supporters, and gifts. between the first three, we are nearly able to cover what essentially amounts to our fixed monthly expenses, which would utterly put us under otherwise.

i’ve been on disability since 2006. before then, i’d paid so little into social security (starving artist, youth work, 10 years) that there really wasn’t much there for us to draw from, but it helps. (16%)

our primary provision comes by way of a private benefactor whose contributions are both charity and the backing of a ministry that he believes in. (58%)

ministry income, on the other hand, would come from concert offerings, honorariums, any studio fees and CD sales. i’m unable to do much in this regard at present, so we don’t have that income. what we do have is a handful of friends who commit to $100-200 per month for 12-month periods at a time. (16%)

gifts would include one-time donations (sometimes submitted to a benefit fund set up for us at emmaus lutheran church in bloomington – see details below), and help from family members covering the more costly necessities like cars, car maintenance, and home appliances. this is also where some of you may come in. more in a moment.

vocationally, jen was in her last year of nursing school when she was told to quit to be my fulltime caregiver. and i think it’s safe to say that any vocational intentions i had six-months ago have been suspended indefinitely.

so, for the time being, this is where we are.

(i need to hand the reigns of this over to jen for a while, for believe it or not, i’ve spent the better part of two days writing what you’ve read thus far. pages have been discarded, much rewritten, in order to say exactly what i wanted to say. such exactitude is no longer affordable on my part; my back and bottom hurt to the point of distraction, my hands too tired to continue. and it’s getting late; it’s saturday night, i need to put the boys to bed, and i have yet to pack… i’ve given jen the bullet points, and it could be said she’s better qualified than i am to write what follows. my notes as post scripts will be added in italics…i’ll wrap up at the end…)

a) day care / preschool for jo isaac:

When I began nursing school last fall, we found a fantastic in-home day care/preschool for Jo Isaac (3 years old) just one block from our home. We had committed ourselves to this necessity for the one year I had left of nursing school, and we were able to acquire a student loan to pay for his tuition. When it became clear I could no longer continue nursing school in this circumstance (and would thus no longer receive the loan), we decided to keep Jo Isaac in the daycare, knowing we’d need him cared for while Jeremy was in transplant, and again throughout his recovery when it is necessary for me to take on the role of primary caregiver. This will provide me with the freedom to be with Jeremy during the day when all three boys are in school, and, once Jeremy returns home, will allow our youngest (and busiest) consistent play time with friends during the times I will have to be wholly dedicated to caring for Jeremy. This costs us about $800 per month, and a generous giver committed an amount covering three months. We are one month into that. If you would like to contribute to this financial need in particular, please send your gift to the benefit fund (see address below).

b) increased prescription costs / various medical bills

Our understanding is that once Jeremy is inpatient, all his costs are covered, but once back home, we’ll incur lofty prescription costs and other additional medical bills. We had a taste of what that may be like from these past few months, and it’s substantial. Again, if you’d like to contribute to addressing our medical expenses, please send your gift to the benefit fund.

c) groceries and home goods and gas

If you’d like to help practically with these needs, places we commonly visit are Cub Foods, Target, Holiday or BP gas stations. Gas cards will help a lot as I’ll be making daily trips back and forth from the hospital for as much as three months.

2) meals / food tidings

Many of you who live locally have offered to provide meals for us – thank you. It’s been wonderful. Our church, CityLife, has set up a meal schedule for us online, and it can be used by anyone. Click on the link here if this is a way you would like to help: http://bit.ly/I1k2yc

3) fun / gift cards

 i guess this one’s mine… amazon gift cards for books and such, itunes gift cards, star wars legos (for my boys…or me…a great way to pass the time during their visits), and lastly, i’m in want of good music gifts or recommendations (classical and especially good jazz)… back to jen:

When things are tight financially, it’s difficult to spend on the fun things, rightfully so. Although these things are not necessities, gifts for leisure and entertainment (good distractions) are a taste of God’s grace for us.

4) edification : good sermons, scripture references, cards

            emails, websites, links, good podcasts…but little holds a candle to a good card…our address will be found below…

5) visitors : setup, guidelines, expectations

We understand that many of you who are local may want to visit Jeremy during this time. If you are interested in a visit, we are asking that you please contact his brother Patrick at least one day in advance so that we can be sure that it’s at an appropriate time and that Jeremy’s capable of having company in his room. He will be in an isolation room his entire stay, which does not allow for many visitors at a time. We ask that you please contact Patrick a couple days in advance via email (patrick.n.erickson@gmail.com), give him your phone number(s), the day(s) and time(s) preferred, and he will be in contact with you within 24 hours with a response. Patrick will be in constant communication with us regarding Jeremy’s condition and he’ll be able to keep visitors coming and going on a predictable basis, making sure Jeremy has adequate time to rest. Please understand that if you are scheduled for a visit, we may have to cancel it for any number of reasons. We ask that you contact Jeremy or Jen an hour before you’re scheduled to arrive (if you don’t have our numbers they will be provided you in a confirmation email), just to make sure that nothing has changed. Also, please remember you cannot come at all if you have symptoms of illness of any kind, or if anyone in your household has any symptoms, or if you know you’ve been exposed to any illness. Jeremy’s immune system will be in a critical state almost his entire stay, with one of his greatest risks being infection. You’re part in keeping him well there is greatly appreciated.

okay. thank you my love. perfect.

a few links, and some parting thoughts:

we’ll be using a variety of means to communicate how things are here.

facebook: http://www.facebook.com/jeremyjohnny

twitter: http://www.twitter.com/jeremyjerickson

broken body blog: http://www.jeremyerickson.com

caring bridge: http://www.caringbridge.org/visit/jeremyerickson

my twitter updates (however much can i say with 140 characters…i’m learning) are reposted on facebook, and the 5 most recent tweets appear on the sidebar of my broken body blog. anything i post to my blog will be mentioned and linked to from the other three. the general use of each will be according to as follows:

i will tweet moment by moment updates when there are things to share, including rhythms of my heart, of the day, wanderings of my mind, and urgent prayer requests; anything that can be said succinctly. facebook will be similar, with more latitude, more of my life. my blog will be overviews and musings, exercises in writing, my means of processing the experience at hand. caring bridge will be in part jen’s way of doing the same, although it’s likely too that longer synopses – things that can’t be said with 140 characters – will stand a better chance of being seen here first, so this will be a good place to get the details, the “facts on the ground,” especially during those stretches of time in which i am unable to give them. jen will also tend to be both more straight-forward and more positive than me, so if you ever get tired of my complaining, you have options. just sayin.

so, i think that’s it for now. no, i know it is. because it’s sunday morning, and i have yet to pack. more than that, the doors are closed to my room so i can finish this, and it’s not just sunday, it’s the sabbath; a day on which we here in our home make a special effort to be present to one another, and this is the last day i’ll be present here for quite a while.

so there’s really much more i could say, but i must pray and trust that i’ll have the strength and time yet to say it, and close with this:

i woke early this morning after one of those “deep and dreamless” sleeps, naturally, but with a very sore neck. there was the pain, but there was also a deep peace, a presence, like that of a large hand in which i was being held; ‘awash in a gentle swell of shalom’ was my tweet; like i was floating on the surface of a vast sea, lifted and lowered in a rhythmic rolling of the waters.

alone, but not alone.

pain and peace.

simultaneously, i hurt, and was being held by the holy God.

our prayer is that there’ll be less pain and more peace in the months to come. the days will be hard, but perhaps they’ll not be as hard as we imagine. what i know is this: so long as we are held by the holy God, even the hard days will be holy, and if the hard days are holy, there may be peace in the pain, and if there’s peace, perhaps the pain can be borne with patience.

praying for peace, and patience, and as little pain as possible.

and so encouraged to know that you’re in this with us, praying too.

here we go.

jeremy

(see addresses below)

and, if you’re able/willing, please share this post somehow. i’ve no doubt if you’ve read this far you recognize the significance of these words for us. i’ll be unable tomorrow to do much of my regular reposting, so any help circulating this update would be appreciated. thank you.

Jeremy Erickson Family Benefit Fund, 8443 2^nd Ave S, Bloomington, MN 55420

*gifts given to the benefit fund are tax-deductible

Jeremy, Jen, Ade, Eli, and Jo Isaac Erickson, 8121 4^th Ave S, Bloomington, MN 55420

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

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,

jeremy

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

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.

if you managed to follow my facebook posts at all, you likely picked up on the fact that this was a long week for us. all in all, we had five consultations, half-a-dozen exams and scans, a whole lot of blood work, and one painstakingly long bone marrow tap.

i was facedown on the table for an hour. the initial procedural doc made two attempts through one incision and a third through the second before handing the tools off to the next in line. it finally worked and they got what they needed, but i essentially went through the pain and discomfort of four separate taps. this doesn’t always hurt for people. it does for me. real bad.

but i was medicated. so while it hurt nonetheless and i can remember it well, i cared about it less. less than jen, that is. this was the first tap she’d sat in for. not a terrific first run. at one point she began gently rubbing my ankles. a few minutes later she realized she was moving her thumbs so fast she was probably creating more anxiety than she was relieving. in any case, they got what they went in for, and i went home.

so tuesday, the day of the tap, was our shortest day there. that’s all we did. every other day required between 6 and 7 hours of our time, and they kept us busy.

the short of it is we learned a lot. some of it was familiar ground (radiation, repeat chemos, etc), but the transplant itself, and the life that follows, was new territory for us. this is no small thing. our lives will be changed.

but i will deal with what we learned in another post. this is all just to say that, aside from the cold, we are good to go. a welcome surprise at the end of the week was the report that all the testing revealed my organs to be in terrific shape. aside from my malicious marrow, threatening to turn into cancer and trying to take my life, mine is a body wanting to live.

and it’s on that note that i’ll end for now. i have an appointment this tuesday for a follow-up look-see at my cold. i am on an antibiotic through the weekend, and if my cold is not abating by tuesday the date for my admission will be postponed.

if not, i’ll have one more week of life as it is.

stay tuned.

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

i am often urged to focus on the 8o. it is implied that my consideration of the 20 is morbid and unnecessary. why i don’t agree:

20% is 20%. it is not what’s most likely, but it is not nothing. talk of it as much as i may, considering its probability, i do not give it the time it is due; i do not dwell on it 20% of the time. in fact, most of the time, much more than 80% of it, i am living in the expectation that i’ll be around for much longer than the months between now and the most difficult stages of the transplant. i live with the expectation that i’ll live.

however, the weight of the moments i give to considering the 20 is considerable, and so when i talk of it, it may seem as though that is all i do. it is not. but the impression it leaves on me when i do is no small thing, and so it must be talked about.

but we do not like to talk about it. we do not like the specter of death. we do not like its presence. we squirm and look away, talk about the weather and the game, insist that there is no possible outcome but the one we want, the one in which i don’t die. the one in which i live. to think of it any other way is intolerable.

that is not fair. it is not fair to the ones who live most viscerally with the numbers at hand. we need the opportunity to grieve, to prepare, to ready ourselves for one part of what could be ours to bear.

i have seen a man about to die denied the opportunity to prepare for his death by the surrounding community that insisted his death was not a possibility. he died. two weeks before he did he told me he had started planning his funeral, and had talked with a friend about building him a box, when the praying community around him insisted that to think of such things was a lack of faith, and that he should put these thoughts as far from his mind as possible.

he died two weeks later, and, though he passed quite peaceably himself, he left a confused community in his wake. his funeral could have made so much more sense had he been allowed the opportunity to interpret his death for us; if he would’ve been allowed to form his funeral in the image of his understanding of what was at hand.

as it was, his funeral was (to me at least), though beautiful in many ways, confused: he died. we prayed for his healing, we were sure it would happen, and it did not. what happened? perhaps he could’ve helped us make sense of it all. what a kindness that would’ve been. what a comfort!

therefore, what man, when offered an opportunity to prepare for his own death, to ready his heart for his passing; a chance to put things in order before it happens; the possibility to provide for his friends and loved ones his own understanding of his own death; what man would pass up on the opportunity to do that?

perhaps there are some who would; some who wouldn’t care to give time to such things, regardless of the outcome.

i am not one of those.

for me and my family, we must give our attention to the 20%.

for the first month after my diagnosis, we all felt as though i’d received a death sentence. we did not feel good about it at all. call it morbidity or negativity or a lack of faith, it was what it was: a fact. the numbers were a fact. our feelings about them were a fact. though the outcome with which we were weighed down was by itself not yet a fact, our feeling about it was, and it was something to be dealt with. how?

some would say the best way to deal with such things is to deny them, to not give them the time of day. i think you know how i feel about that. if not, i’ll say it again:

20% is 20%. while it is not most likely, it is not nothing, and should be given the weight it is due. i must finalize my will. i must have a health care directive. and while some may think it going too far, i feel i must also think through my own funeral, and write or record parting messages to my boys. difficult things. too far?

think about it: if it truly is a possibility (which it is – consider a six-shot revolver and a game of russian roulette – it is that), and this possibility was yours, and you had the opportunity to do these things, wouldn’t you do them? or would you leave them undone in the name of positivity? in the name of faith?

perhaps it is my melancholic bent and its effect on those near to me, i don’t know, but i will do these things. and i will not consider them an unnecessary downer or an indication of a lack of faith. nor will i consider the grief of those near me something to be quickly quenched for the sake of hope and wellbeing.

we, myself and my family, have needed to prepare for the 20%. we have needed to grieve. we have needed to put things in order. we have needed to nurture our faith in the shadow of what’s real (people do die, that’s a fact), and then steel our resolve and set our faces towards the cross that may be ours to bear. and then? and then what?

and then, we can set it all aside and set about the business of living. we can rise up and lean hard into the solid presence of the possibility most likely ours to abide, the possibility that i’ll come out of this alive; the possibility in which death will be something to which i can say, no. not now. not yet. i am going to live.

see, hope that denies death – that is something. it is hope. but when death comes, what then? what is it then? hope that looks death squarely in the eye and says, yet i will hope that even still i will live – that is a stout hope, one that will live on unchanged regardless of the outcome; one that will look into the age to come if it is deferred here and now.

for such a hope is bound to the real, to the present that is, as some call it, the eternal now. this is that kind of hope that has accounted for what may happen and has said nonetheless, i will hope. i will hope and will not be dismayed if that for which i hope is not realized now, for there may be yet another means by which my longing is to be fulfilled, and therefore i will wait for it with patience.

this is the hope to which i ascribe, the hope for which i strive to work through the 20, living eventually into the 80 that may be the gift we will so gladly (ever gladder for having considered the 20) and gratefully (ever more gratefully) receive.

soon to lean on the 80, i am

his with you,

jeremy

btw ~ i delivered a sermon at citylife on sunday. it felt to me the most important sermon i’ve ever prepared. it has been posted both on the citylife website (www.citylifechurch-twincities.org), and on mine, at www.jeremyerickson.com. click on “i speak” and look specifically for “in uz with abba: is it worth it?” it’s nearly an hour long, and communicates a lot of emotion (i had to push through tears for much of it). it conveys what we believe about suffering and God’s relationship to it. so get comfortable with a cup of joe, have a box of tissue nearby, and join me on my journey into what lies ahead. as a fair warning, you may not agree with everything i have to say. these are hard words, yet there is a haven of hope in them, and i hope you’ll meet me there.

~ oh, and i promise my next post will not be quite so “morbid.” (-:

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,

jeremy

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 (www.jeremyerickson.com) 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,

jeremy

follow “a broken body blog” and “a musing blog” on my website: www.jeremyerickson.com