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.
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,