closing in on six months now, still no transplant, so where are we?
when i was diagnosed late october, and my oncologist of seven years handed me over to doctors at the U, the plan was to hit the ground running, to do the transplant as soon as possible. first, an intense round of chemo prior to the chemo for transplant was required to reduce the number of blasts in my blood.
my marrow, broken by what saved my life seven years before, was putting forth these stillborn blood cells that increased the risk of complications during transplant, therefore any more than 5% blasts made one ineligible for it. mine held nearly 6.
so an additional round prior to transplant.
but we asked for a plan B, anything to buy us a little time to grieve the recent loss of jen’s dad.
plan B was three passes of a one-week-a-month mild chemotherapy, given in a shot to each arm daily for five days straight (mild to the body perhaps, but not so much the pocketbook: 25 franklins per shot, ten shots per week, for three weeks – seems we’re on for roughly 5% of that).
the hope was that this chemo would calm the disease and keep the monster it is behaving more like bruce banner than the hulk it could become. so far so good.
it was also possible that this milder chemo would reduce my blasts a bit, maybe enough to make that extra round unnecessary.
in this respect, things went better than expected.
as it turns out, some effects of that chemo are slow in coming. when we biopsied my marrow early march, my blasts had reduced to just less than 5%. good. no additional round necessary.
it’s been nearly six weeks since i finished my workup. we’ve been on standby ever since, scheduled and rescheduled many times over. last week, i did a repeat biopsy (went much, much better than the last), and my blasts pretty much disappeared.
that is good news. it does not change things much, except for the risk factor going in, which is significantly reduced, and that’s a big deal.
so, that’s the bit about my blasts.
but one more thing might be said about this whole blast business: i needed that extra month. we could have started the transplant when we intended, and i’d have gone in with nearly 5% blasts, right on the brink of it being too dangerous to do.
however, on account of the delays – concerns about my sinuses, my root canal, the flu – enough time has been allowed for that milder chemo to do its thing, and i will now, more than likely, go into the transplant in a much safer state.
that’s all i’m saying for now. except maybe to mention there a lot of people praying for me; praying for a me who fusses and complains about a day seeming like a thousand years.
i will champion lament until the day i die.
but i will also celebrate a God who answers the prayers of his complaining people, loving even, perhaps especially, those who complain to him, coaxing them into better places, better dispositions, states of mind and body more suited for the trials appointed them.
with each delay, i have crossed one more monumental task off my ever shrinking list of things i hoped to have done before transplant, things that five weeks ago loomed over me like the unfinished works they were.
amazing how it all works out.
it doesn’t have to; it doesn’t have to make sense this side of dying. nowhere is it promised that our disappointments will be woven together in such a way that it will make sense to us in this life. for most things, we will need a different perspective, we will need to step out of it to see it rightly.
but occasionally it does work out and occasionally it does make sense, and not necessarily in huge all-satisfying resolutions that sweep over us like waves from the sea, carrying away our pain and disappointment, sufficient to abolish all doubt; but in small, nonetheless satisfying ways, like hints of a grand intention; a larger story whose plotlines we shall one day see.
hints of this sort help us hope; hope that the mess will make sense in the end.
they say that there is a way in which the human brain cannot bear disorder, so it instinctually overlays disorder with order, making connections where there are none until the disorder is ordered, and therefore makes sense.
i get this, it is, in a way, how we learn; but might it be more?
could it be a kind of mechanism by which we see God at work in the world? a sort of sense for discerning fragments of the woven story all history really is? a means by which we glimpse hints of a grand design in an otherwise random, purposeless mess?
i would encourage those who don’t believe such things to understand that it is this for many of us. it is faith that affords the view, to be sure, and i know it often seems like a stretch. i understand the difficulty in accepting such calculations as any thing more than inferences of our own making, for i have a very good friend who sees more connections in a day than i do in a year, and i am prone to be skeptical about it. but then i remember that connections that seem so obvious to me present equal challenges for others.
and i understand all the complex arguments that arise at the suggestion that there is a personal intent to all that happens, for not all that happens is good; i understand that point very well, and i do not intend to satisfy all the many contradictions here.
i mean only to say that the five weeks of waiting i’ve been grumbling about all along turned out to be not so bad for me after all.
but i guess i’ve said more than that, too. i do that sometimes. my apologies.
on a lighter note, i realize i haven’t been all that consistent in posting these past five months, that those i’ve posted have been few and far between. i suppose there’s a possibility this might change once i’m in the thick of things.
facebook and twitter are my primary ways of communicating moment by moment updates, even those more day by day. my five most recent tweets will be posted on the sidebar of this page, but even if you’re not a tweeter (what do they call us on twitter? twits?), you can view all updates at www.twitter.com/jeremyjerickson
we also have started a caring bridge page that stands a chance at being more consistent than this, for it will be more jen’s ship than mine, allowing her an easy way of posting during those stretches of time in which i’m unmoved or unable. she’ll link to my posts here, and i may write something there occasionally, too. it’s a public page, and though there’s not much there yet, can be found here: www.caringbridge.com/visit/jeremyerickson
i go into the U clinic tomorrow morning for a final look-see. a swab earlier this week confirmed that influenza A is no longer a problem. a CT of my sinuses showed them clearing up just fine. if nothing comes up tomorrow, i’m finally good to go, and all we’re waiting on is a bed.
this part of it, like so much of it, is out of my hands. i have a coordinator at the U who’s promised to make things happen. once she sees an open bed one week out, she’ll call the lab to prep one of my cord blood units, my admission date will be set in stone, and i’ll enter the hospital exactly one week after that.
in the interim, it’s house arrest. i become a hypochondriac, love my boys from across the room, pack my bags, and count the days.
and i’ll wish a day really were a thousand years.
waiting with you,
btw, men in my life have given/done a variety of things to have me know they’re in this with me; my friend mark made me a song, and i love it. a man needs men to be strong; here’s one of mine: