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.
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)