Posts Tagged With: Disappointment

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.


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

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:

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,



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:


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,





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

In the Meantime

first off, my sincerest apologies for being so silent for so long. i realize that many of you may feel in the dark about what’s going on here. i am sorry. i mean to be more consistent with these, and will do my best once there is more to convey. i’ve considered twitter and facebook for brief and frequent updates, and we are outfitting my website to serve as a sort of caring bridge for longer entries and such.


i am mindful too of the fact that my last (and longest) update was explicitly the first of three, the second and third of which are as of yet forthcoming. i still intend to write those. this is not that.


but i am aware that it may be another week or more before i am able to write the next, and i wanted to give you a brief synopsis of how things are in lieu of the longer “this is how we feel about things” yet to come.


by way of explanation, my silence has been due to an intense distraction, one that i think has proven fruitful. most of you know that i recently released my first christmas album (and you can link to that here). this was the distraction.


“advent” has been a work in process for the past two years. before my hospitalization in october, i had every intention of finishing it this year. then came the setbacks, of which you are all well aware.


once things settled down after the funeral, i went to work, and the work went on two weeks longer than i had hoped. i was in the studio nearly every waking hour, aside from family time and the occasional obligation elsewhere.


in any case, it was therapeutic up to a certain point, and then it was work. but the distraction from things as they are was thorough, so much so that the thought of what is, as i came up from the studio, was breathtaking in a bad way. like being hit in the face by a strong winter wind that will not let you breathe.


but as said, working with the music was therapy. and it served to remind me of the very real implications of this pre-christmas season we call advent. this season of waiting with expectation.


the album is arranged in such a way so as to fit familiar christmas carols into an unfamiliar setting. two original songs begin the album, and a borrowed rearranged hymn sits near the end of it. the familiar carols are then arranged in the middle in their respective places relative to the story being told.


and that story is the coming of the king, the king for whom we’re waiting. the king who calls for our allegiance. the king who comes to put the world to rights. the king who inaugurates the new creation.


if that new creation means new bodies (and we believe it does), i like that idea very much.


but this is where we’re at with the body i’ve got: a holding pattern. doctors at the U desired to bring me in for aggressive chemotherapy the week before thanksgiving. this would’ve involved a weeklong hospital stay, and a month that followed being very sick.


the thought of this being our context for the holidays, and that, right after losing jen’s dad, was too much for us to bear, specifically as we considered our boys. so we asked if there might be another way.


there was. and plan B buys us some time.


this entails, as an outpatient, one week of a mild chemotherapy every month, and this for roughly two months. so the week after thanksgiving i went to the regions cancer clinic daily to receive a shot in each arm of this somewhat helpful toxic sludge.


when my arms started getting sore (on day two) we tried two shots on my belly. bad idea. i’m still very bruised. bright purple two-inch smudges on either side of my button. and it irritated my skin so that my shirts felt like burning weed.


another less than fun side effect was what it and the necessary anti-nausea meds did to my belly on the inside. can i put it this way: crosstown at 62 and 35W pre re-do during rush hour, for more than a week. i’m still quite uncomfortable.


my counts are holding steady: platelets at 46 (normal 150-450, transfusion at 20), and hemoglobin relative to my red blood cells at 9 (normal 13.5-17.5, transfusion at 8).


the exception has been my white cell count, which for the past month and a half has hovered right around 1.2 (normal 4 to 11, transfusions aren’t possible). below 1 is when one’s technically neutropenic, or extremely vulnerable to infections. my doctors have made the point that the test itself allows for two points of deviation, so i’ve been pretty near neutropenic this whole time.


but they went up, and quite a bit. my reading last monday was 2.2, and with the mild chemotherapy i’ve been on for crohn’s disease, my normal numbers have been round 2.4 or 2.6 for the past few years.


so this was very good news indeed.


it’s why when i came to church on sunday i had no need for a mask. i still need to be careful about germs and bugs and all, carrying around a bottle of purel in my pocket and avoiding sick people – i mean that literally, of course – like the plague (because with a weakened immune system, any bug could just as well be), BUT i can be social. and this feels very good.


not to mention the fact that we (jen and i) don’t understand why my counts would do that. it was unexpected. perhaps our doctors expected it as an outcome of my last week of chemotherapy, but they didn’t tell us about it, so it came as quite a surprise.


and was a catalyst for hope.


i let myself entertain the “what if” of healing. and this for the first time since the prayer service – an unspeakable blessing that was by the way. and i mean unspeakable in the sense that even i can’t find the words to describe it.


perhaps my speechlessness that evening – when it was time for me to tell my story and i couldn’t (most of you know how i’ve never had much trouble talking to a roomful of people) – will serve as an ample example (forgive me) of just how profound it was. and that was before i sat on a stool surrounded by people who loved me praying faith filled prayers with emotion that took me by surprise.


who gets to do that?


we feel very upheld by prayer in this season. in spite of near transfusion level red counts, i’ve routinely had so much energy i’ve felt nearly manic. life feels so normal right now, so good. it is very hard to think about what may await us in the new year.


the need exists to make some very sober preparations. and we are so distracted by christmas and all the glorious activity that surrounds it (christmas with my family in roseau, with jen’s in wisconsin, and again here in the cities) that it is only with great effort that we settle down enough to absorb the weight of it all, and then it’s all the weightier for life being so good in the present.


what we know awaits us is this:


first, another ten shots of chemo the week after christmas.


next, our ten year-anniversary. the fifth of january is the day ten years ago that jen and i reached the top of the roller coaster. after all that clicking and lifting and giddy anticipation, the ride began. and what a ride it’s been. we aim to celebrate this somehow, though likely not as elaborately as we had hoped, circumstances considered.


then, my second bone marrow biopsy. the one that says wait a minute, or green light go. we’ll be looking for that rogue chromosome. if it’s gone missing, my diagnosis changes and a transplant may not be necessary. and we give props to God for pulling his new creation from the age to come right back into ours.


or, it’s still there and the clicking and the lifting and the not so giddy anticipation begins again.


another thing we’ll be looking for is the percentage of defective blood cells, or blasts in my marrow. the number has to be below 5% for the U to take me for transplant, and the lower it is the better the transplant could be expected to go. at last count, my blasts were at 6%, and this on a standard scale of 1 to 10.


if it remains at 6%, it will be necessary for me to do a week and a half of aggressive chemotherapy, called an induction round, as an inpatient at regions. i’ve done this before. it’s almost the exact same protocol as my first month 6 and a half years ago. it is not fun. but we know i can do it. or at least, that i should be able to.


once my blasts are at an acceptable percentage, and i’ve recovered as much as i can from the induction round (2 to 3 weeks at home with low counts slowly climbing), the U will take me for the work-up week: checking for any remaining infections, testing my vital organs, basically making sure i’m in the best possible shape for the transplant.


because we only get one shot at this.


then i’ll be admitted to the U and they’ll start the countdown. T minus 7. only instead of seconds we’ll be counting days to transplant day. i will, for those 7 days, be hammered with more aggressive chemotherapy, all with the intention of more or less killing my bone marrow.


this is daunting – not the chemo part (they told us this would not be the worst week of my stay) – but the part about a part of me so vital to my vitality (the part that makes my blood, very important) being beaten to the ground and then beaten again. never to rise.


ah, but the good part, the hopeful part, is that the incoming stem cells (from an umbilical cord blood donation from a match we have not yet found) could potentially build brand new bone marrow from the ground up with a totally new operating system.


i’d get a new engine. and i’d get a new lease on life.


bring it on.


the hard part then, from there on out, will be the waiting. they will continue to suppress my immune system for as long as it takes (up to two months) to give the incoming stem cells the time they need to set up shop. during which i will be extremely susceptible to infections, subject to my own body’s rejection of the incoming DNA, and daily putting extreme stress upon my heart, liver, and kidneys.


deep breath.


i’ve been very sick before. starting may of 2005, over the course of 2 years, i was subjected to 78 separate infusions and injections of aggressive chemotherapy, 170 some days of oral chemo, 80 some days of high-dose steroids, and 2 weeks of cranial radiation.


it saved my life. and made me very, very sick. and left me with the disease i have today.


i’ve been very happily distracted with productive activity this past month, and i’ve had some terrific times with friends and family, and i’ve felt relatively well.


yesterday my white counts were down again, back where they’ve been. and my hemoglobin and platelets dropped yet further. a discouraging turn.


as i went to bed last night – far too late, yet again – i ached all over with a pain that my high octane pain meds couldn’t seem to touch, and my muscles were twitching randomly from the bottom of my feet to the very top of my head. and my chest felt heavy, making it hard to breathe, a bug of some sort coming on. and i laid there feeling my bone marrow slowly calling it quits.


for the first time in awhile i anticipated viscerally how sick i might feel in months to come, and i was very sad.


as said already, we have felt very upheld by the prayers of many for a long while. perhaps this is a necessary sorrow to feel, but i don’t think so. would you pray that the heaviness of what is to come would not drown out the joy of this season. that i would stay well (a simple bug could throw our christmas plans under the bus). that we would continue to have life-giving conversations with our boys. and that jen and i would be able to celebrate our 10 years together with joy and not sorrow.


we have felt very blessed by your gifts, and by the general response to my album. we realize we have not taken the time to really lay out in detail the needs we will have going into this season. or the needs we have now. some of them are financial. some of them are social. some are daunting. we do still intend to write an update (how life gets rearranged part 3 of 3) detailing these things.


and i do still intend to write an update explaining how we feel about all this; about the presence of yet more hardship in our lives; about being sick again; about the possibility of death; about the possibility of healing, of the miraculous; about God and his goodness in the midst of it all; and about your support and your presence in our pain (part 2 of 3).


this update is neither of those, but i do hope it serves to keep you from feeling in the dark. i have chosen to suffer publicly. in large part because we’ve experienced how the prayers and support of many make such a noticeable difference in our ability to weather the storm. in part because we believe that no suffering is truly solitary. all are affected. and the weight of it all is meant to be shared, so as to make the weight on any one of us a little easier to bear.


and in part, because i believe i have something to say, and i pray for the courage and strength to say it. strength in my hands and my back, strength in my mind and my heart, and strength in the deepest part of my spirit, the part where i believe where God is really good, really loves us, and is really near.


because he is, he does, and he is.


that’s why we call him emmanuel.


wishing you and yours a deep and meaningful christmas.


in his care,


Jeremy (jen & the boys)











Categories: Cancer, MDS | Tags: , , , , | 3 Comments

Of the Culprit and the Cure

your prayers and kind words have meant much to us this past week. our faith is strengthened and our minds put at ease when we learn we’re being prayed for by so many. and the comfort food delivered to our door has not only kept us fed, but has served as a daily reminder of the community of which we’re apart. we feel less alone as we sit down to a meal that has been prepared by the hands of others. so thank you. your kindness contributes to any peace we might have through this time.


difficult days. hard news…and then again.


i feel that jen and i and our boys have grieved well the loss of grandpa bruce. we are sad, but at peace. for we deeply believe he’s alive and well in a dimension unseen by us, but no less real than the flesh and blood reality that we know so well.


and of this flesh and blood reality…


it seems that my bone marrow has stopped working. my body is no longer capable of producing the blood i need. a chromosome has gone rogue and changed my marrow from what would be compared to life-giving water to something more like paint-thinner, or saltwater at best; it’s wet, but you can’t drink it.


by necessity my care has been transferred from the health partners network at regions hospital to the transplant department at the university of minnesota. they called yesterday to schedule my initial consultation, which is next thursday at noon.


because i have not yet had that consultation, there’s only so much i can say with certainty. but i will nonetheless share what i’ve come to understand so far.


i have what is called treatment-induced myelodysplastic syndrome, or MDS. it was once known simply as preleukemia, which it is, but that tells only half the story, thus the name-change. it literally means funny-looking bone marrow, which sounds fairly benign. it is not.


it would seem that i am in the highest risk category for this turning into an aggressive leukemia. however, even on this side of that, my bone marrow is no longer capable of producing the blood my body needs – white blood cells, red blood cells, and platelets – the whole package. it is barely doing so now, but even that diminished ability is vanishing quickly.


it is called treatment-induced because it is most likely a consequence of the aggressive chemotherapy that saved my life six years ago. i received massive amounts – and a broad spectrum – of chemotherapies over the course of a two year time span, and as mentioned, it saved my life.


but we were also informed upon finishing nearly five years ago that the longterm consequences of that treatment could be severe. this is that.


(this is not to discourage anyone from necessary and curative chemotherapy, as most treatments do not do this…)


when i was hospitalized last week, we were hoping for a cancer or something of the sort that would require less of us than what was required years ago.


this is not that.


what will most likely be required, and what my doctor has already spoken of with us, is a stem-cell (bone-marrow) transplant, preceded by an induction round of chemotherapy very similar to the first month of my cancer treatment years ago.


this is hard news.


i meet the cut-off age-requirement for such a procedure by 4 and 1/2 years. according to some i am “young and healthy,” but those of you who know me well know how fuzzy that statement is.


i will require another’s bone-marrow, as mine is so broken. the closer kin come first, so my brother patrick and my sister mia are receiving DNA testing kits from the U in the mail; for the closer the DNA is to matching mine, the better the odds for a transplant free of complications, the main being graft-verses-host disease, in which my body rejects the incoming marrow and all hell breaks loose in my body.


but we don’t want hell. we want heaven. we want it here and now – in this world, in this life – touching my broken body and making me whole. and so we pray.


this is all very hard news. our hearts are heavy. it is hard not to be morbid. there is no pre-crisis naivete, as is so common and so divine, as we’ve done half this before, and it was very hard. in fact, when i finished last time, i had decided i would not do it again, if it came to it.


but it has come to it, and God help me, i’m going to fight like hell. for there is much life to live.


(…and if i’ve offended you, i am sorry. there are very deep emotions in play, and i pray you will understand and give me grace appropriate to the circumstances…i speak this way so rarely…but words can do many things…)


blood transfusions will likely be necessary between now and the transplant. they typed me specifically last week, and put me on the blood bank’s short list. so far so good.


and no infections, please. i’ve almost no immune system, and bugs subdued in others could be a menace in me. a fever would put me back in the hospital, and my family needs me home right now. we need life to feel as normal as possible, at least for a little while.


i’ll have another bone-marrow biopsy in three weeks to confirm what we’ve found so far, and to gauge how rapidly this is progressing. i am thinking it would be good to pray between now and then that this rogue chromosome would change its mind and my counts would return to normal. there’d be no explanation but God and the prayers of his people, and i would have a new lease on life. i’d like that very much.


many of you have offered to help somehow. thank you. as we understand more what this next year is going to look like for us, we will think through more specifically how you might enter in and make life possible for us. know that right now, it just feels good to live a nominally normal life. that will likely change.


thank you, thank you, thank you for caring, and for being in whatever way “in this” with us. i’ve said this before, but it’s worth saying again: pray and hope, hope and pray. we know that the God who lets us suffer (he does) has suffered Himself (he has) and so we trust him. but we can’t trust him all by ourselves. we need you. so thank you for hoping and praying with us and for us. we are deeply indebted.


in his strength and for his glory,


jeremy (jen and the boys)


btw ~ we may very well start a caring bridge site in the weeks to come. in the meantime, facebook works well, and i will not turn down a friend. so if you want to stay “in the loop,” find and friend me. your presence is appreciated.









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