Posts Tagged With: Hope Deferred

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

Death, the Possible (Part II)

so there is a 20% chance that this treatment will kill me. and an 80% chance it will not. this is what it’s like abiding with the 20%, and this is why i do it:


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,




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 (, and on mine, at 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.” (-:


Categories: Cancer, MDS | Tags: , , , | 6 Comments

How Life Gets Rearranged (part 1 of 3)

it’s been hard to know where to start, or how. it’s been four days since our first appointment at the U. we’ve spent the weekend in a haze of grief, perhaps denial. the news is hard –  not the worst, but not the best, either – and there’s just so much information. i’ve been overwhelmed by the sheer magnitude of words required to convey it all to you, our friends, praying through and feeling it all with us.


thank you for being out there, somewhere. for somehow, your presence is mediated through your kind comments, messages, emails…and we do not feel alone in this. just the contrary. we feel plain spoiled by the ready support made evident in your words. and i’m struck dumb by the manner in which these online mediums can convey the sense of community they do. but whatever the means, we need that now more than ever.


there is so much to be said. my thoughts bottleneck before they make it to the keyboard, and i’ve only just now thought of a way to clear the clog. i will write three separate updates: one strictly focusing on the facts, one on how we’re feeling about it all, and one detailing some of the ways that you might help. many of you have asked how, perhaps we can offer some ideas.


so first the facts, in a nutshell (think walnut, or coconut, perhaps):


what i have is treatment-induced myelodysplastic syndrome. my bone marrow has stopped working as an unfortunate consequence of the chemotherapy that saved my life six years ago. a chromosome was changed and tossed the whole blood-making operation into jeopardy. it has drastically inhibited the production of all three primary blood components: red blood cells, white blood cells, and platelets; and I have what are called blasts in my blood. these are basically stillborn blood cells, and they serve as a complication for the transplant.


in short, of all the myelodysplastic syndromes, mine is the hardest to treat.


technically, it is not cancer, but that hardly matters. it is near certain that it will turn into cancer at some point in the next two years, and there’s no telling when it will do so. it could be next year. it could be next week. and the acute leukemia it would become is even harder to cure than this. so the race is on, and it matters very much who’s the first to the finish.


what the race entails:


the cure requires we go great guns. the transplant i am to undergo is called a hematopoietic allogeneic myeloablative transplant.




the breakdown:


hematopoietic: highly adaptive, multi-potent, stem cells; these are stem cells that can turn into any kind of blood cell.


allogeneic: from a donor; preferably related; if not, then from blood generated from umbilical cord blood, which contains the most adaptive stem-cells available in non-related options.


myeloablative: and i quote… “severe bone marrow suppression.”  this means high quantities of chemotherapy and radiation prior to the transplant, and continued immune suppression for a good deal of time following.


now, from what i understand, even though i’ll be receiving the transplant via blood, not marrow, it is still called a bone marrow transplant, or BMT. this is partly because the way in which it is done allows the transplanted stem cells to recreate my marrow from the ground up, as my marrow will be basically dead by the time the incoming stem cells are received.


what doctor sarah cooley recommended was that we begin an induction round of chemotherapy immediately to reduce the percentage of blasts in my blood. this would be done at regions, not the U, and would be nearly identical to the induction round i received in may of 2005. it is a very aggressive pounding, and would require one to two weeks of inpatient care, with an additional two to three weeks at home waiting for my counts to recover.


we’ve done this before. we know what it is like. and as unfun as it is, we know that it is possible. we can do this. we are grateful for that.


once my counts recover (and in my case the numbers wouldn’t have very far to go) the workup week would begin. this is an intense looking over, a testing of all my organs, scanning and probing for any lingering infections,looking to affirm that i have a baseline of health capable of proceeding with the transplant.


if good to go, i will be admitted to the U. the first week would be another round of aggressive chemotherapy. it is another pounding, but (i’ve been told) far from the worst of it all.


post chemo, with my marrow as good as dead, the transplant of healthy stem cells by way of blood transfusion will take place. and this would either be cells harvested from my brother patrick (sister mia may be ineligible because of her pregnancy), or a cord blood match (while not the best option, a match with the registry is almost a sure thing).


from that point on, my job will be to stay alive. i could be in the hospital (in isolation, no immune system) for up to two months. this will be a long and arduous stretch of fighting infections, monitoring vital organs, and dealing with the adverse affects of graft-versus-host (GVH).


these are the primary risks: 1) infections; with no immune system for so long, the mildest bugs could be very formidable foes 2) organ failure; the big three being liver, kidneys, and heart, as the chemotherapy and continued immunosuppression are taxing to say the least, and 3) graft-versus-host; this is when my DNA fights the incoming DNA, and it can manifest as something as harmless as a skin rash, to something as unfun as nausea and vomiting, to something as fatal as renal failure. GVH can arise at anytime following the transplant. anytime. two days out, two months, more. and a little GVH is a good thing, indicating a robust influx of healthy cells, but it goes without saying that too much GVH is something we’re praying against as if my life depends upon it. because it does.


once home again, i must see a doctor at the U every day for a season, then every other day, and if i continue to improve, with less and less frequency over the course of many months. there will also persist the possibility of additional hospital stays, due to the great variety of potential complications.


so that’s that.


believe it or not, that’s not the hard news.


it’s the odds that are so difficult…the likelihood that it’ll return…that it won’t be cured…that the treatment itself will take me out.


even after all the above, or perhaps because of it, the odds are decidedly stacked against me, the numbers are not in my favor.


i say this all very carefully, for i know i’m not a number, not a statistic, not yet. and i know it will be necessary to focus on the good, on the cure that is also possible. so, while i will write next (and honestly) how we feel about this, i will end here by leaning into the good.


how’s this:


the odds are not in my favor, but just barely. and i’ve never been much of a numbers guy anyway. what do they matter.


and the induction round of chemotherapy may yet be avoided. due to the recent tragedy of losing jen’s dad – the primary caregiver for our boys aside from ourselves – we have asked if there might be another way. a way for us to have a season of normal life here at home before normal is upset once again.


doctor cooley is consulting with other transplant doctors about the viability of a plan B. i may be able to do a milder chemotherapy over a longer period of time and be able to do so as an outpatient. while it would still be difficult – my hair would fall out and all that (my hair being the least of my troubles) – this would potentially buy us some time, and allow us a fairly normal holiday season with the boys.


it is not the favored option, according to doctor cooley, and may not be as effective in decreasing my blasts as the induction chemo, but it is what we would prefer. so we are waiting to hear from doctor cooley as to whether or not we can do this, and if not, how long we can hold off on getting this whole thing underway.


so, i think that’s it.


i’ll say nothing of how we feel about it here. that will wait for another day. but i do want to make known one important thing that we are seeking to do about it, and it may very well involve some of you.


this coming sunday, the 20th of november, at 6:30pm at the central mission in saint paul (1632 charles avenue, two blocks north and west of university and snelling), we will be having a prayer/healing service in which i will beg the prayers of God’s people for my healing, and if not that, the kind of hope and faith and peace that only the breath of God can provide. i invite you to join us if you can. if not with your presence, at least with your prayers.


hoping and praying, praying and hoping, but grieving nonetheless,


i am his,




Categories: Cancer, MDS | Tags: , , , , , , , , , , , , | 1 Comment

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