MDS

Here We Go / How You Can Help

this is perhaps, thus far, the most important update i’ve posted. it is also the longest. but it includes answers to questions that have long been asked, and rarely addressed. if you’re in this with us, grab a tasty libation (or a popsicle), settle in, and read through to the end. there are no prizes, just the promise of a clearer grasp on where we are and how you can help. and it starts here:

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 2nd Ave S, Bloomington, MN 55420

*gifts given to the benefit fund are tax-deductible

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

 

 

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Categories: Cancer, MDS | Tags: , , , , | 40 Comments

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

 

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

A Thousand Years

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

 

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

 

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

 

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

 

in the meantime, an update, and some thoughts:

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

so, more time.

 

strange time.

 

twlight time; no longer day, not quite night.

 

some thoughts about time and timing:

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

the timing of the lord is perfect.

 

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

 

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

 

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

 

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

 

i wait for the bell that never rings.

 

i grow tired and spent.

 

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

 

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

 

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

 

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

 

but i’m tired of it.

 

stalled and staring at the wall.

 

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

 

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

 

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

 

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

 

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

 

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

 

the timing of the lord is perfect.

 

wait on the lord. wait. wait. wait.

 

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

 

that is what it is like.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

so ring that bell.

 

and so help me God,

 

jeremy

 

 

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

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