ever had a dream in which you’re trying to say something really important, something that needs to be said yesterday, for someone who’s waiting eagerly to hear it, and you’ve either lost your voice completely or simply can’t find the words?

this post has been long in coming, for many reasons, and there’s much to say, so, for those of you in a hurry, i’ll put the medical stuff up front, and save the rest (how i intend to write and post updates and such) for the main body of the post.

i had another bone marrow biopsy yesterday. the one that’ll determine when and how (and i suppose even IF) this whole thing will happen.

two things they’re looking for:

1)   that rogue chromosome. is it still there? has it made friends, started an uprising, a revolution? are there turncoats all over? or has it, by some miraculous intervention, changed its miniscule but remarkably consequential mind?

2)   the percentage of blasts in my blood. in the case that this rogue chromosome is still at work, there will be a certain number of immature blood cells in my marrow, for not only does the rogue suppress the production of healthy cells, it also releases botched cells into my bloodstream. these are called blasts.

my last biopsy revealed 6% blasts. the number has to be below 5 for the U to take me (the lower the number the better the odds for a rejection-free transplant), so it is my long-term cancer care team that is responsible for getting that number to where it needs to be.

the mild chemotherapy they’ve administered in the past two months has the capacity for knocking that number down, but not often in such a short period of time. if the percentage is too great, i will be required to do a week of intense chemotherapy (an induction round) as an inpatient at regions hospital, with another 2 to 3 weeks of recovery time at home before beginning the work-up week at the U.

if what we’ve done so far has worked, i could be meeting with the U of M transplant doctors by the end of next week, my work up week beginning as soon as one week from this coming monday.

too soon.

the results of should be ours sometime early next week. i am meeting with an oncologist on monday. once we know what there is to know, i will pass it along to you.

i have said that i would write an update detailing how we feel about all that is upon us here and now; about my illness and its treatment, about my father-in-law’s passing, about the possibility of death for me, and the hope for healing either here or hereafter.

i’ve begun several drafts of this, with every intention of fully describing the complexity of all our mental and emotional responses to the circumstances at hand.

and rightly, i’ve questioned my ability to adequately do so. this past month has been rich with activity, a christmas better than, if not much like many before: the getting and giving of gifts, good memories made, sicknesses avoided…difficult conversations set aside for times more appropriate for the weightiness due them.

but those more appropriate times rarely came. those difficult conversations, rarely had. life has been so normal, so good. and the thought of what might lie ahead for us, of what doctors say is mine to endure, seems so distant and so unnecessary as to be nearly inaccessible to my contented mind.

yet there have been glimpses, rare moments when i’ve been able to peer into this other world – the world of crazy counts, cancer, a stem cell transplant – when i’ve been able to think clearly about all that it brings to bear, and i’ve been utterly paralyzed by the sheer volume of what i’d want to write about, and the absurd number of words required to say all i want to say.

it’s not that there are rules for this sort of thing. but there are expectations i’ve raised by saying i would do something i have not yet done. i must scale back my ambitions a bit. and instead of writing what would be the book required to sufficiently explore all our thoughts and responses to my illness, i will do so more on a thought by thought basis, setting out, when i sit down to write, to cover one particular thought per post.

in short, I intend to write less and post more, and if i do not find the time or the ambition to cover something i now intend to, so be it. my word on any given day is far from the last word on any of it anyway.

so with that, among the things i hope to address:

~ our initial reactions to the diagnosis

~ our familiarity with the difficulties of chemotherapy

~ our thoughts on prayer and the hope for healing

~ our theology of suffering

~ our take on western modern medicine

~ our approach to alternative therapies

~ the possibility of death

~ our parenting of our boys in this season

~ our needs and how you might meet them

and our appreciation of the community that has gathered around us in this time.

so, spelling it out so plainly, i am again struck dumb by the scope of what i hope to cover. really? who wouldn’t be intimidated? and why does what i think about hope and suffering matter anyway? what could i say that hasn’t been said before?

all i know, is that God is telling a story with my life just like he’s telling a story with yours. my friend ben says we’re made to know and be known; God, and by God; others, and by others. similarly, we read to understand, and we write to be understood. sometimes we write to understand, too.

it helps me understand, writing does. and it seems to help some of you to read it too. i’m under no illusion that i’ll get it right all the time, and i pray you’re with me on that. and i’m under no illusion that you’ll all agree with me all the time either.

i have the remarkable honor of knowing believers and skeptics across a wide spectrum of beliefs relative to the topics mentioned above. i personally find it exhausting to disagree, though i know it cannot be avoided. what i can do is share with you my heart and mind, and to a certain extent, why it is that i think the way i do. and i hope it may be obvious to many of you that i am not all that original, at least not in the sense of thinking something new. others have thought these thoughts before me, and their words have funneled me into the groove in which my mind now moves. and i do expect to meet some of you there.

and i hope in weeks to come that you’ll hear from me more often. my intent is to use the existing blogs on my website (www.jeremyerickson.com) in this manner:

“a broken body blog” will pick up where my most recent updates have left off, with the “how we feel” about things commentary, the longer “life gets rearranged (part 2 of 3)” that’s been promised, broken up into smaller pieces. essentially the thoughts and reactions hinted at in this post. then the blog will eventually shift into ongoing updates regarding my illness and its treatment, and the various thoughts and struggles that arise because of it. i intend to post here (“a broken body blog”) roughly once a week.

my more deliberate writing (and i hope more thoughtful) will be reserved for “a musing blog” also on my website. many of you know i’ve for years intended to write a book, specifically a theology of suffering in conversational language. i’m wondering whether i couldn’t use this blog for that purpose, writing the book there in bite-sized chunks, again posting weekly, the two blogs rotating through my mental field of vision on a regular basis. it could be a good book-writing arrangement, your thoughts and comments fine-tuning what i am trying to say.

(there is also a music blog on my website, where i hope to offer the occasional post highlighting new music and/or videos and such, as i am able.)

my impression is that to be a blue ribbon blogger one must regularly respond to comments and such. for what it’s worth, i may not be a blue ribbon blogger.

i will most often have to leave the conversation in the hands of my readers, for it typically requires of me all the key-tapping, butt-parking, and brain space i can muster just to post what i do. (some might say i have other things to tend to too). your grace for my silence would be much appreciated.

your presence in this (i consider your reading an act of caring) matters much to me.

i am reminded too, that all this writing, it is not for nothing. i write for people who care, and for many who turn these posts into prayer.

and as one who believes there is a God, good and strong, who hears and responds to every one of those prayers, i can’t help but think…

who wouldn’t want that?

so, on to that next post.

gratefully surrounded by people who care, i am

yours and his,

jeremy

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

 

 

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)

 

 

 

 

 

 

 

 

 

 

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.

 

breathe.

 

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 20^th 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,

 

jeremy

 

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.

 

 

 

 

 

 

 

 

thank you all for your prayers and offerings this past week, as things

have been difficult for me and mine. i am presently in the cancer ward

at regions hospital, feeling more or less better today than i have for

a week. i am suffering from a case of prostatitis, a case of

pneumonia, and a case of inexplicably low blood counts.

 

beginning with a trip to the ER on friday, and culminating with an

admission to regions monday, doctors have been exploring the realm of

possible explanations for my pain and my numbers being all askew. i

have been on a steady course of IV antibiotics since being admitted,

and with the apparent alleviation of my fevers and night sweats today,

and with the partial clearing of my lungs, I not only feel a bit

better, but we’ve been able to arrive at our first positive

conclusion: these presenting symptoms are infection related, and not

leukemic.

 

many of you know i was treated from 2005 to 2007 for lymphoblastic

lymphoma, a sister to acute lymphocitic leukemia. so when my counts

crashed last week, of primary concern was either the relapse of

lymphoma, or the onset of leukemia. no evidence of this was found in

my blood or lymph systems on friday. then i was admitted for the

infection on monday and for a bone marrow biopsy which was done

yesterday, all this on account of my low blood counts. the results of

this and blood cultures are pending. from what we understand, there

are two primary possibilities:

 

best case scenario ~ a medication i’ve been on for four years for

crohn’s disease (6MP) may have triggered the counts crash, and the

infection followed hot on the heels of my immune system checking out.

the infection now under control, the biopsy results will confirm this,

and we’ll start artificially rebooting my immune system in hospital,

until it and i are strong enough to go home. within three weeks,

wallah! back to normal.

 

worst case scenario ~ i have leukemia. enough said.

 

either way, we’ll know by the weekend. and either way, it will be

necessary to jumpstart my immune system once we know what’s going on.

this involves injections, and a days-long process that makes my bones

hurt. i’ve done it a bunch before. it’s only great because of where it

takes you. anyway…

 

the best case scenario got a few votes today, but we still won’t know

for sure until the results are in. please pray with us for the best

news possible.

 

in the meantime, i’m anemic and neutropenic, real tired with no immune

system. i’ve been told a blood transfusion is mine for the taking.

pray that i don’t catch anything else, and that my well-being

continues to improve.

 

and please, please, please pray for my family. for jen, who is in

nursing school fulltime, and who had been depending on me to get the

big boys to and from school all week every week (and i’d been doing a

right fine job of it too!). and pray for jo isaac, who’s been sick at

home all week with a fever since visiting the ER on saturday. and pray

for ade and eli and little jo when they’re all together, as they begin

to fall apart when they don’t get sufficient daddy time. i’ve been

sick for a week. they haven’t seen me since sunday.

 

we had a good family worship service sunday, so in some ways we’re

prepared for this, but they still need me around. and i like being

around. being around is good.

 

so pray and hope, hope and pray. we know the God who lets us suffer

(he does) has suffered Himself (and he has) and so we trust him. but

we can’t trust him all by ourselves. we need you. so thank you for

being the church with and for us.

 

in his strength and for his glory,

 

jeremy (jen and the boys)

 

 

Well, I suppose it is time again for me to check in with the wider world.

Once upon a time these postings were as necessary to me as morning coffee. Not only did they serve as the means by which family and friends came to know how I was while I was sick, but they were the means by which I kept alert to the events of any given day. Blogging kept me alive to the little things, everything potential material for the next post. I miss that sort of alertness – that attentive posture towards life as it happens.

But I haven’t had time for blogging these days. With great effort I’ve managed to focus my writing in a more fruitful pursuit. On the fifth of January, Jenny and I celebrated our seventh wedding anniversary. Seven years – in Old Testament biblical language, that’s one week. On the first day of the new week, Jen spent her first day at home when she normally would’ve worked, and I set about the task of writing my first book. And most days since then I have left the house for four or five hours each afternoon, parking my aching body at a coffee shop not too far from home, managing to peck out a page or two at each pass.

The process feels a bit precarious. Like each day great care must be taken to maintain the delicate illusion that I have something to say – something worth someone else’s time. As long as I’m able to sit down with such presumption, the whole thing moves along rather nicely. But there are other days, weeks even, where the whole affair seems a bit too presumptuous, and my words fail me. Nonetheless, by all accounts I am ahead of pace, or at least in step with it, as, at ninety pages in, I am nearly half way through my material.

The book I’m writing is a casual exposition of the convergence of two realities – suffering and the existence of a loving God – as it is played out in the biblical narrative, and to a certain extent, my life. But it is not autobiographical. That I hope to write after this book is finished. I picture it like this: occasionally I am invited to come share my story at churches here and there. I typically preach a sermon Sunday morning and then give a more informal concert and story time later that evening. The book that I’m working on now is the sermon, the book I’ll come to next is the concert.

For the most part, my hands are doing fine. They hurt and I’m still on pain meds for that and my back, but I got a nifty ergo-keyboard recommended by my friend Barnabas and it serves me well. Additionally, I try to make it to the gym three days a weeks to move my body just enough to make up for all the time I spend hunched over the keyboard. Still, it feels like I’m just a step ahead of entropy. Just a step ahead of the decay implicit in the sedentary life. Occasionally my fingers tingle. And my legs.

But I’m playing guitar again. Not much, but enough to get my calluses back. And while I don’t feel strong enough yet to lead worship from the stage, I am doing what I can to do so from the studio. Getting to know a handful of musicians from Mercy Vineyard in Minneapolis rekindled a fire in my belly to return to a project I started in concept five years ago. It’s called A Lutheran Liturgy.

I’ve taken the sung liturgy I grew up with and made each refrain the chorus for its own song, writing the verses around it and giving each refrain fresh context. When I’m done I’ll have a seven song EP that’s essentially a Lutheran worship service from start to finish, right out of the Concordia or Ambassador hymnal. And my first album in four years. These will be the only art songs I’ve written since the winter of 2002. I’ve written elsewhere of what it’s like when my muse starts to move again – like the river in Lucy’s Narnia when Aslan brings an end to winter – writing the book and producing these songs has been like that. A bit like springtime on the inside after a very long winter.

Speaking of winter, most winters are very hard for me. The spectrum of mood gets a bit heavy on the depressive side. This year depression stayed in the periphery, close enough that I could see it from time to time, but far enough away so as not to cause too much trouble. While medication and therapy has contributed to that, there’s no question we owe part of it to the kindness of a few close friends. Our benefactors, for one, who make it possible to be at least a little less worried about our finances these days (and for Jen to be home with our boys), and our friends Ben and Andrea, who invited us to join them on a week’s vacation in Florida. Having the sunshine to look forward to and enjoy while there cheated winter, denying its usual cold hold on my heart. My mom and dad stayed home with Ade and Eli and Jen and I took Jo Isaac with us to Orlando. Rich memories were made both places for all of us. And for the whole deal we’re ridiculously grateful.

I was given opportunity to speak to the student body at Oak Hills Christian College in February. The whole family came with for that, and our time there was memorable. Real good people. Jen, Jo Isaac, and I will be flying to North Carolina in April where I’ll be speaking at an Awana youth Summit. Prayer as I prepare for that would be appreciated. I’m speaking on service, which is why bringing Jen with is such a necessity, as she knows so much more about serving others than I do. Daily I’m reminded by her giving that I’ve got much to learn. You could thank God for her with me.

And my medical hobby continues, though with less gusto than previous years. Doctor Joel takes care of my back. Doctor Hakala continues work on my jaw (my molars no longer come together in the back – I chew only with the help of a spacer I wear while eating). Doctor Hurley keeps an eye on where the cancer used to be, and is still interested in what seems to be an enlarged thymus. Doctors Albie and Guibord monitor my moods, helping me out when they can. And Doctor Hotvedt handles everything else. The whole ordeal can be exhausting, but we’re managing alright, keeping appointments corralled into one day of the week rather than two or three. Thus keeping most the other days clear for writing.

So it’s official, for the time being anyway – a gentleman poolside in Orlando asked me if I was an academic, and privately, I wanted to laugh a little (I’ve dropped out of more schools than I’ve attended), but I answered him by saying, “No, I’m a writer.”

I’m a writer. At least that’s what I am these days. At least that’s what I do. I travel a little and I speak a little. And in my spare time I make music. Good grief. Read my postings from a year ago and last August and one can’t help but laugh just a little. I’m reminded of the psalmist’s prayer from psalm 90, and our prayer from less than a year ago: “Make us glad for as many days as you have afflicted us, for as many years as we have seen trouble.” God, it might seem to some, is answering the prayers of his people.

Gratefully, we are…

Still His,
Jeremy

So we prayed for laughter – a change in ourselves or our circumstances that would provoke such gut level jocundity. One such change occurred: A friend of ours has seen success in business in recent years. And he has committed to pay a good portion of our bills every month while he can to afford me the opportunity to write and Jen the freedom to stay home with the boys.

This is what every artist dreams of yet most often knows only in a dream. For us, for now, that dream has become a reality. This fledgling artist has a renaissance benefactor.

Our prayer is that, with Jen home throughout the week, and me not fretting about gainful employment, we may collectively focus our efforts on the writing of a book and the raising of our boys; finding and keeping a weekly rhythm that is conducive to both.

Of course there are abiding obstacles.

My immune system is crippled. I get sick more often and stay sick for longer than I should. I am tired a lot. I sleep ten to fourteen hours a day. My neck, back, and wrists are constantly nagging for my attention. And pain shrinks existence. Pain focuses self on self. It’s hard to fight this some days. And such self-centeredness is pervasive – not limited to the physical. God have mercy.

Good news is that Crohn’s is rather quiet – more or less under control in my body. We’ve figured the source of recent irritations to have been too much magnesium in my supplements, and too much acid in my belly. Easily fixed.

A recent routine scan (once every six-months) for cancer called for further investigation. A follow-up scan revealed a busy thymus. Well, you know what they say: “thymus money.” So for now, my six-month scan cycle will be tightened to one every three months – until they can positively rule out cancerous activity.

A doctor I saw today said it may take years to feel normal again. “Yeah, I know, but it’ll be two years next May.”

“Two?” he said. “For you, try twenty.”

Twenty years to normal.

“This is a very hard word, master. Tell me, how can this be?”

“Ten times the chemo, ten times the recovery.”

So I’ll be fifty before I feel like thirty again?

A hard word indeed.

Still, laughing more than a little, we are

Still here and still His,
Jeremy

P.S. Sample my preaching via the downloadable messages posted on my homepage. If it be a word that would benefit your community, consider sending me an email to request a visit. I’d love to come share my story and testify to God’s might and grace where you are.

Jo Isaac – Joseph Isaac: “May the Lord add Laughter.” We are praying for laughter. Both for a change in circumstance – one that might yield the fruit of laughter – and of disposition – one that might be more prone to laugh.

Those of you who still read this blog know that my months-long silence is a digression from my posting pattern of the previous two years. This has not been for lack of a story to tell. There’ve been other reasons for my silence.

If I could I would tell of a long winter. Of psychotherapy and depression. Of prednisone induced Bipolar II and mood stabilizers. Of 12 months of not writing. I’ve had the wind knocked out of me, in a way. Gut-punched while stepping out of the ring. Things were supposed to get better. But since last summer and the completion of chemotherapy I’ve stopped writing to ease my painful hands. I’ve got weak wrists. Haven’t been able to seriously play guitar for two plus years. Any creativity’s been thereby stifled. Dreams and momentum are doubled over, gasping for air.

In October of last year, Crohn’s disease relapsed in my body. I’ve since had to begin taking 6MP: a mild chemo drug that effects the immune system in such a way that there may be a possible link to the onset of certain types of lymphoma. Like the kind I got the last time I was on 6MP. Though it’s not proven, and it’s hard to be certain, the medical profession admits it is at least a potential instigator/catalyst to cancer. I’ve seen several doctors on this issue. There’s really just no great way of treating Crohn’s in the medical world.

Every treatment comes with a potential catch. And though the cancer connection is as of yet hypothetical, it is nonetheless a mental/emotional blow. Feels a little like we’re starting the cancerous cycle all over again. The sick-boy cycle. Question: “Will I ever be well again?” The answer seems to be given in a Crohn’s relapse and its subsequent treatment: “Forget it, sick boy.”

Clinic visits and doctoring are still a significant part of every week. Weekly schedules revolve around such things. Makes it hard to exist as anything other than “the patient.”

We have been genuinely enjoying the summer. July at least. But the pleasure seems an event, or pocket/exception, in an otherwise stark landscape/era of ambiguous despair. This is either the beginning of better times, or another precursor to hope deferred.

Jo Isaac is a prayer, and perhaps part answer to that prayer. He has been a delight. Sleeps well. Takes a bottle. He has unlocked untapped affections for the other two boys in me. Love and delight has been exponentially multiplied in his presence. I’ve enjoyed being a dad more these days than ever before. We’re praying he is this way a harbinger of better times.

I write now out of that need for prayer. Prayer for direction. Clarity. Strength. Hope. Hope. Hope. While I was on chemotherapy, hope was based at least in part on the fact that chemo would one day be done and I would be healthier than before. That day long ago came and went. Didn’t anticipate chemo leaving quite the mark it did. Fatigue from the fight with cancer and its treatment has been known to last for years. This is made worse by effects of Crohn’s and its treatment. And this chronic, undiagnosable pain and its treatment.

This is the backdrop for the persistent question of vocation and provision. Man’s got to do something. To work. To contribute. While I desire most to be a writer and itinerant speaker (and music would be nice, too), my hands hurt and don’t work well. The same could be said of my heart. Speaking then is also made difficult. I was in ND in March, right at the bottom of a mid-winter sinkhole, my heart was depressed and slow to hope. Speaking that week was very difficult, and I have doubts about how beneficial it is for my audience when I speak out of such a place. And it is a place I’ve found myself in more often than not this year.

Other jobs are made equally difficult, even unattainable, by these persistent ailments. Our current living arrangement is nearly perfect and the least expensive way we could live in the Cities. Still, the sum of my disability check and Jen’s wages renders even this unsustainable. We would soon sink were it not for charity. We float only on the good graces of generous people. And these days, just barely. Family, mostly. And a few good friends. The gratitude weighs heavily on my heart for some reason. The words “thank you” get caught in my throat. The pursuit of wellness for this body has become an expensive venture. And the weight of it is often debilitating. So pray, please. Pray with us. Pray for us.

I would not be writing or posting this if there were not still some faith in me. We are expectant. We are praying and asking others to pray with us that God would provide something, somehow, in such a way that we would laugh. We are considering paths for our future and asking God for discernment, words, and courage. We are praying for new ways of living. Pray with us, please. And rejoice for the prayer, the promise, and the life of our little Jo Isaac.

Thanks for checking in.

Still His,
Jeremy

P.S. I will be speaking/preaching in Illinois and St. Michael, MN three Sundays in August. This also in the midst of yet another Crohn’s flare-up. Again, your prayers are more than appreciated.

So here he is. Sorry for taking a month to get this posted. Things are busier with three already – and this one isn’t moving much yet. He sleeps though, which is great. Jo Isaac, a prayer: “May the Lord add laughter.” Praying our third is the harbinger of better times. Pray with us, please.

June 4. 1:37AM. 7 pounds, 2 ounces. 20 inches.

Perhaps I’ll post a more exhausting – I mean, exhaustive – posting in the days to come. Yell if you’re curious.

Blessed again, and grateful, now five, we are…

Still His,

Jeremy and the rest