Death, the Possible

so my most recent biopsy results revealed a disease holding steady. no progression, but still there, evidenced by deformities in the cells my marrow produced. the chromosomal study is still pending, but isn’t expected to show anything different from my october biopsy, as the cell dysplasia (funny-looking-ness) is the tell-tale sign of that rogue chromosome still at work.

 

my blasts (immature cells) have decreased, not significantly, but enough that the extra induction round of chemo (prior to the transplant chemo) will not be required. this is good news, as it means my body going into the transplant will be in much better shape than it would’ve been after the induction.

 

the surprise in all this, was that the transplant team at the U, instead of taking me for the transplant work-up this week, said they wanted me to do another cycle of the mild chemo i’ve been doing these past two months first. that includes this week of injections, and three weeks lag time for maximum efficacy. and that means that i get another month at home before it’s go-time at the U.

 

breathing easier now. we needed this extra time. one would think we’d be ready, given the time we’ve been granted already, but no, we weren’t.

 

these past few months have felt more like a vacation, me being so healthy, life feeling so normal. and with much to celebrate: birthdays, christmas, new years, our ten-year anniversary. jen turned thirty on saturday, a somber celebration in some respects. nonetheless, the possibility of it all coming to a close this week was a little jarring. believe it or not, we weren’t prepared.

 

on some levels we were, but not across the board. these extra weeks don’t have the aura of vacation anymore. it’s all preparation. the final descent.

 

so on we go, grateful for the extra time, the breathing room.

 

everything has a certain intentionality to it. i’m recording myself reading my favorite scripture passages for my boys, telling my stories, too, with a digital recorder and its little red light; we’re painting the room in which i’ll spend most of my home-time post-transplant, complete with a writing desk, a comfy reading chair, and a bed; i’m in the studio, tracking rough cuts of songs i’ve written but never recorded; we’re writing wills; we’re writing updates.

 

perhaps you sense in those preparations a long-term vision that looks in two directions at once. it does, because we must. perhaps i can unpack that here.

 

we’re given statistics to account for the possibilities inherent in a transplant such as this. i’ve mentioned these numbers before, stacked against me, but just barely. here’s what i mean:

 

there are two stats in particular that have caught our attention. one is in regards to the effectuality of the transplant as a cure for my MDS: 40 percent; there is a 40 percent chance that this will work. the other is in regards to the potential lethality of the transplant itself: the odds are 1 in 5 that complications will arise that will do me in.

 

imagine you were told one morning that if you walked out your door there would be a 1 in 5 chance you wouldn’t return. would you leave?

 

of course, in my case there is a killer in the kitchen that’ll get around to me eventually if i stay. and he may leave the house while i’m gone.

 

there are a variety of transplants, each with their own risks; each with their own set of numbers. mine happens to come with numbers like these.

 

there are those who would be quick to point out the 80% chance that i’ll make it. i, too, want to go there, but not so fast. here’s why:

 

because death is very real. it is especially so for us right now. with jen’s dad’s sudden passing this past fall, and not just his passing but the brutality of it; with the slow and painful death of the mother of one of our closest friends fresh in our minds, our boys especially deserve the chance to be prepared for every possibility, including this one.

 

another good friend, one who lost his mom to cancer when he was seven, wisely asked me what the one thing would be that i’d want my boys to know going into this. i answered, in retrospect, i would want them to know that my death did not take me by surprise. he said, yes, with tears, that’s it. that’s what made the difference for him.

 

he who passes over the opportunity to prepare for his own death, for himself and for his family, wastes a remarkable opportunity to connect the dotted lines between this life and the next. i will not waste this opportunity.

 

death is always a possibility. always and for each of us. and it must be looked squarely in the face as our own if it is to be rightly seen at all. the christian philosopher peter kreeft writes an excellent book on this, “Love Is Stronger Than Death.” i am only half way through with it, as it is one to be digested slowly, over time, and i’ve not had the time to read it in order to do that well. but i am certain he is leading me in a good direction, the progression from death as enemy to death as lover, through the faces of stranger, friend, and mother… too much to go into in the moment, but worthy of anyone’s time who is seeking better to understand the end to every life (including your own) short of Christ’s return. i highly recommend it.

 

in any case, how do we go about preparing our boys for that?

 

we’ve received good counsel, i believe, and it is at its simplest, this: fan into flame the kind of faith that believes God is God, God is good, He is in control, and He can be trusted to be with us everyday and always, even to the end of the age.

 

there is more, of course: crystallizing an understanding of the afterlife that is more alive than this life, directing their gaze to the resurrection of the dead and the age to come; of lions lying down with lambs, trees that forever bear fruit along streams that never cease to flow, brand new bodies that eat, hug, laugh, play, and possibly walk through walls.

 

but even all this is contingent upon the first, upon God’s goodness and upon God’s God-ness. His promises are moot if these attributes be not his.

 

so this is where we seek to guide their little minds: to nestle in the exhortation of isaiah 41, simply, do not be afraid.

 

my mind to, needs this kind of guidance. to fan into flame in my own heart the kind of faith we seek to instill in theirs. to be able to entrust my family and their care to the provision and the presence of God, with or without me. this is no small thing.

 

i’ve been there before. i remember. i couldn’t do it then.

 

one can be mindful of the fact that we’re no strangers to this kind of suffering. it was the same in another season that gave rise to the cause of this one. the cause of this cancer being the cure of another. say what you will about the ill-effects of such a cure, i’ll point out it still saved my life, gave me another seven years in which to live.

 

in any case, we remember, though not with the clarity that present suffering affords, the depths to which our human hearts can descend. we remember just how evil the evils that befall us can be. we are, none of us, guaranteed to be spared the full effects of the fall. we deceive ourselves if we think otherwise, and render our hearts floppy and unprepared should such evils be ours to bear.

 

should we refuse it our attention because it is not fair? because i’m young? because i am dad to three young boys?

 

a young father from my hometown, a divorcee, died of cancer leaving five children behind. death is not fair.

 

hebrews eleven, the often referenced christian “hall of faith” itself allows that “some were sawed in two.” a faith that doesn’t reckon with such a possibility will be a faith unprepared in the face of such an eventuality. it is, after all, the faith that survives such a fate that is being paraded in this hall of faith. that is a sober faith, indeed.

 

so we have sought in recent weeks to think on these things. and there is more thinking to be done. but we are ready, too, to move into a more hopeful disposition.

 

we think ourselves hopeful realists, not given to denial or despair, but rather committed to what paul miller calls the desert way: hoping for the best while living in light of what is. we interact with what’s real. we hope for what is not yet.

 

some might think our dwelling on the possibility of death a capitulation of faith, a downer to the aims of positive thinking. we think it right and proper. and difficult as all hell. it’s not much fun, either.

 

but it is there as a number on a page, a possibility that must be considered if it is not to be an opportunity wasted.

 

so do we say to our boys that daddy could die? we do not. but do we guarantee them that i’ll be okay? we don’t do that either.

 

we simply remind them that God is God, He is good, and He is with us always.

 

they know death is possible. they know what death is. no need to nurture an anxiety they don’t already have. rather, we speak plainly to the anxiety that is, and we say:

 

do not be afraid.

 

be sad. be prayerful. but do not be afraid.

 

then we bless them and put them to bed, and go to sleep ourselves saying the same thing over and over again.

 

do not be afraid.

 

there is, of course, an 80 percent chance that i’ll be okay; that i’ll be around for their next birthdays, an eleven-year anniversary.

 

good. we will hope for that, and better things too.

 

but we will not pass up the opportunity to see life in a whole new way. and if our faith be shaken, let what can be shaken be shaken. we can only start with what is. i’d rather know the little faith i really have is solid, than merely hope the great faith i hope i have is real.

 

God has been good to me in that regard, and i can honestly claim no great faith.

 

but i know the little faith that is there is really there.

 

and for that i can only say, thank God.

 

entrusting you with an unedited rant,

 

please be kind,

 

i am

 

his with you,

 

jeremy

 

 

 

 

 

 

 

 

My Plan to Post

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: http://www.jeremyerickson.com