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.

 

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

 

Of the Culprit and the Cure

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

 

difficult days. hard news…and then again.

 

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

 

and of this flesh and blood reality…

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

this is not that.

 

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

 

this is hard news.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

in his strength and for his glory,

 

jeremy (jen and the boys)

 

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