this is perhaps, thus far, the most important update i’ve posted. it is also the longest. but it includes answers to questions that have long been asked, and rarely addressed. if you’re in this with us, grab a tasty libation (or a popsicle), settle in, and read through to the end. there are no prizes, just the promise of a clearer grasp on where we are and how you can help. and it starts here:
the day has come: monday morning (4/23), i will rise from my bed, kiss my bride, brush my teeth (in that order), and send my boys to school, all for the last time, as the original me. this neatly knit package of protons and neutrons, this delicate dance of DNA, is coming undone. literally the core of who i am as a body (i do not merely have a body, i am a body) is broken, barely holding up against the effects of the fall of man.
we cannot live this way forever. we wouldn’t want to. our efforts to subvert the brokenness in ourselves are themselves broken, imperfect. it was the cure for one disease that was the cause of the other, and this other one will do me in; it will kill me; unless i am made brand new.
so jeremy 2.0 is in the works.
this past monday (4/16), technicians at the U took from the freezer one of two soon-to-be-mine cord-blood units, and they’ve been stirring it up, prepping the stem-cells since, propagating them for MY transplant with a “first-in-human” trial compound, made and paid for by Novartis.
my admission monday will be just a day short of six months from the first sign of my disease – when my counts crashed and i came in exhausted, beset by a virus i couldn’t fend off with my own white cells.
because i hardly had any.
this thing we’re going into; this hematopoietic allogeneic myeloablative transplant – specifically the myeloablative part – is a big deal. there are significant risks. a more common word that carries the same implications as myeloablative would be helpful here, and it is good for us that we have one, and kind of quirky that it sounds so similar:
the old me, my old marrow, must die; it must be completely wiped out; it must be obliterated. the disease isn’t upon my marrow, it’s not even in it; the disease is my marrow, or better: my marrow is the disease.
the core of me is treasonous. it has turned on the rest of me in an act of self-sabotage. but don’t i look good? didn’t my counts rebound? recent blood work has revealed the disease is reasserting itself, and my counts are once again receding. this will kill me if left unaddressed, and quickly.
i’m not trying to give myself a pep talk.
or maybe i am. it’s hard to do what i am about to do. yes, people do it. we know those who have. yes, people live through it, and my odds aren’t that bad (when odds are against us, what do we say: what do the odds matter? right?).
but i needed to remind myself that this whole thing – and i remember what it’s like being sick; i quake at the recollection of it; cower in anticipation – this whole thing is to save my life, not to put it at risk.
i needed six months to get that. God, thank you for the delays.
now, on with the blasted thing. where’s my cross?
my first day at the U, i get my central line placed; a catheter with two ports that leads directly into an artery just above my heart. within a few hours of installing my “pipes” they will be used to administer the first of three days of high dose chemotherapy.
three days, and only two chemos: fludarabine and cytoxan (changing the i to an a in cytoxan does not hide the fact that it is what it is: a toxin, and nasty). i had nine different chemo drugs years ago, cytoxan was one of them; and i had them in high doses. fludarabine is new, but the two of them together, for three days, will be enough, because they will be given in such high doses (please be praying against nausea. i hate nausea).
my old me will be laid low, my marrow unable to make new cells. a day of rest after those three is written into the schedule. one day to honor the passing of the old me.
for some transplants, the transplant happens here, or after another few days of chemo. for an obliterating, i mean, myeloablative transplant, there are four more days of . . . preparation.
on day five, i begin four days of total body irradiation, where, twice a day, they’ll set me up in a big microwave (i can watch DVDs), set the timer for 30 minutes, and give me the equivalent of a trip to the outer atmosphere, without a space suit. i think i will try to imagine it as basking in the penetrating light of the sun from somewhere on the far side of mercury. or, perhaps, sitting in the shekinah glory of God, exposing and obliterating any evil in me, burning it away like chaff, or dross in the refiner’s fire. the crucible. this is the crucible.
ah, all to be sure the old me is as good as gone.
please sit with me with that for a moment; my insides, my core, my marrow for 36 years, done.
totally helpless now. at the mercy of God. no different from any day, i guess; but it’s hard to imagine as i write this. my life will then depend on two little bags of cord blood, and the brand new stem cells in them, brimming with life, ready to build a brand new me from the inside out.
either they do exactly that, or they don’t.
(now you know how to pray)
if God wills, i will have a new birthday on the first of may.
it could be said i’ll have another on the second, as i receive the second unit of cord-blood on the next day. the first? or the second? one doctor told me it may take six months to decide; by then we should know which unit, which DNA, “took.”
throughout this time, and for several weeks beyond the transplant, i’ll have no immune system; and then for months afterwards, i’ll have a baby immune system (i’ll actually have to get all my immunizations over again, ah, the controversy). i will be susceptible to infections, and i have been told i will for sure spike a fever. our prayers then are that the prophylactic measures taken to head off the worst of the infections would be effective, and that those i do get would be of the milder sort, not attacking my lungs or my heart, and quickly resolved.
i share these requests for prayer aware of the fact that God is not a vendor. he’s not a computer we program with our prayers to do certain things. we believe he is a person, he’s involved; he’s a king, and he reigns; he’s a storyteller, and he’s telling a story with our lives; making stories of each of our lives, and for each other; lives and persons and stories that are meant to communicate something of his heart and nature to everyone else.
so many of you have given me an angle from which to see God that would’ve been unknown to me if not for you; in that letter you wrote, your status updates, that meal you made, that check you sent, that year at school, that night i stayed at your place, that book you told me about, that movie, that music, that dinner we shared, that concert you gave, that story you told, your face, your laughter, your questions, your mind, your marriage, your art, your humor, your life, your work, your success, your comeback/recovery, your family, your home, parenting, gardening, your love for peace, for the God who sees us, your love for me, and your love for Jesus.
and thank you for being a part of our story now; in being there, “out there,” somewhere; because somehow, sometimes, out there feels like right here.
many of you have asked over the past six months how you can help; how you can be more present to us in this time. forgive our silence on this matter. we’ve given it much thought, holding off in the knowledge that there’d come a time when we’d need your help more desperately then we did then. that time is now.
more than anything else, we will continually need your prayers. for those of you in the practice of praying, and for those who perhaps, like me, want occasion to practice, i cannot say enough how your prayers on our behalf make a difference in our being able to bear up under the weight of these difficult days.
the strain is significant. but it is remarkable how the mere knowledge of prayers being prayed changes how we feel, not so much the how, but the how much, of whatever it is we’re feeling. it’s the intensity that gets dialed down, just by knowing we are being prayed for.
your one-word responses to my tweets and status updates, praying or praying right now, dial down our anxiety, for we are surrounded by men and angels who hold us up before God in a continual plea for his intervening work, and God always responds to the prayers of his people.
intercessors, lamenters, doubting toms, and faith-filled people: there are a great many ways to pray for us, and there are a great many people praying, but don’t think for a moment that your prayers are any less important because of it. in fact, if you think your prayers are less important (perhaps because you doubt they’ll make a difference), they’re probably exactly the prayers God is prompting you to pray. so please, pray for me and my family, each in your own way.
lastly, pertaining to prayer, we need your kids praying for our kids, and we need our kids to know about it. it does our boys a great deal of good to know there are other kids praying for them. we know this because a few of you have had your kids communicate as much to them, and they are braver for it. they’re not alone.
so, however you want to go about that, the sum of it is this: continue to let us know that you’re praying for us, and pray as though your prayers really matter. because they do.
now finally, if you’ve been wanting and waiting to find out what we need practically, here are the details:
1) finances: a quick glimpse at the setting would be good. i’ve no doubt there are some of you who wonder how we pay our bills to begin with, knowing of no particular job now held by either of us.
since roughly the time of my first cancer, we’ve had essentially four avenues of provision: social security/disability, a private benefactor/patron, other ministry income/supporters, and gifts. between the first three, we are nearly able to cover what essentially amounts to our fixed monthly expenses, which would utterly put us under otherwise.
i’ve been on disability since 2006. before then, i’d paid so little into social security (starving artist, youth work, 10 years) that there really wasn’t much there for us to draw from, but it helps. (16%)
our primary provision comes by way of a private benefactor whose contributions are both charity and the backing of a ministry that he believes in. (58%)
ministry income, on the other hand, would come from concert offerings, honorariums, any studio fees and CD sales. i’m unable to do much in this regard at present, so we don’t have that income. what we do have is a handful of friends who commit to $100-200 per month for 12-month periods at a time. (16%)
gifts would include one-time donations (sometimes submitted to a benefit fund set up for us at emmaus lutheran church in bloomington – see details below), and help from family members covering the more costly necessities like cars, car maintenance, and home appliances. this is also where some of you may come in. more in a moment.
vocationally, jen was in her last year of nursing school when she was told to quit to be my fulltime caregiver. and i think it’s safe to say that any vocational intentions i had six-months ago have been suspended indefinitely.
so, for the time being, this is where we are.
(i need to hand the reigns of this over to jen for a while, for believe it or not, i’ve spent the better part of two days writing what you’ve read thus far. pages have been discarded, much rewritten, in order to say exactly what i wanted to say. such exactitude is no longer affordable on my part; my back and bottom hurt to the point of distraction, my hands too tired to continue. and it’s getting late; it’s saturday night, i need to put the boys to bed, and i have yet to pack… i’ve given jen the bullet points, and it could be said she’s better qualified than i am to write what follows. my notes as post scripts will be added in italics…i’ll wrap up at the end…)
a) day care / preschool for jo isaac:
When I began nursing school last fall, we found a fantastic in-home day care/preschool for Jo Isaac (3 years old) just one block from our home. We had committed ourselves to this necessity for the one year I had left of nursing school, and we were able to acquire a student loan to pay for his tuition. When it became clear I could no longer continue nursing school in this circumstance (and would thus no longer receive the loan), we decided to keep Jo Isaac in the daycare, knowing we’d need him cared for while Jeremy was in transplant, and again throughout his recovery when it is necessary for me to take on the role of primary caregiver. This will provide me with the freedom to be with Jeremy during the day when all three boys are in school, and, once Jeremy returns home, will allow our youngest (and busiest) consistent play time with friends during the times I will have to be wholly dedicated to caring for Jeremy. This costs us about $800 per month, and a generous giver committed an amount covering three months. We are one month into that. If you would like to contribute to this financial need in particular, please send your gift to the benefit fund (see address below).
b) increased prescription costs / various medical bills
Our understanding is that once Jeremy is inpatient, all his costs are covered, but once back home, we’ll incur lofty prescription costs and other additional medical bills. We had a taste of what that may be like from these past few months, and it’s substantial. Again, if you’d like to contribute to addressing our medical expenses, please send your gift to the benefit fund.
c) groceries and home goods and gas
If you’d like to help practically with these needs, places we commonly visit are Cub Foods, Target, Holiday or BP gas stations. Gas cards will help a lot as I’ll be making daily trips back and forth from the hospital for as much as three months.
2) meals / food tidings
Many of you who live locally have offered to provide meals for us – thank you. It’s been wonderful. Our church, CityLife, has set up a meal schedule for us online, and it can be used by anyone. Click on the link here if this is a way you would like to help: http://bit.ly/I1k2yc
3) fun / gift cards
i guess this one’s mine… amazon gift cards for books and such, itunes gift cards, star wars legos (for my boys…or me…a great way to pass the time during their visits), and lastly, i’m in want of good music gifts or recommendations (classical and especially good jazz)… back to jen:
When things are tight financially, it’s difficult to spend on the fun things, rightfully so. Although these things are not necessities, gifts for leisure and entertainment (good distractions) are a taste of God’s grace for us.
4) edification : good sermons, scripture references, cards
emails, websites, links, good podcasts…but little holds a candle to a good card…our address will be found below…
5) visitors : setup, guidelines, expectations
We understand that many of you who are local may want to visit Jeremy during this time. If you are interested in a visit, we are asking that you please contact his brother Patrick at least one day in advance so that we can be sure that it’s at an appropriate time and that Jeremy’s capable of having company in his room. He will be in an isolation room his entire stay, which does not allow for many visitors at a time. We ask that you please contact Patrick a couple days in advance via email (firstname.lastname@example.org), give him your phone number(s), the day(s) and time(s) preferred, and he will be in contact with you within 24 hours with a response. Patrick will be in constant communication with us regarding Jeremy’s condition and he’ll be able to keep visitors coming and going on a predictable basis, making sure Jeremy has adequate time to rest. Please understand that if you are scheduled for a visit, we may have to cancel it for any number of reasons. We ask that you contact Jeremy or Jen an hour before you’re scheduled to arrive (if you don’t have our numbers they will be provided you in a confirmation email), just to make sure that nothing has changed. Also, please remember you cannot come at all if you have symptoms of illness of any kind, or if anyone in your household has any symptoms, or if you know you’ve been exposed to any illness. Jeremy’s immune system will be in a critical state almost his entire stay, with one of his greatest risks being infection. You’re part in keeping him well there is greatly appreciated.
okay. thank you my love. perfect.
a few links, and some parting thoughts:
we’ll be using a variety of means to communicate how things are here.
broken body blog: http://www.jeremyerickson.com
caring bridge: http://www.caringbridge.org/visit/jeremyerickson
my twitter updates (however much can i say with 140 characters…i’m learning) are reposted on facebook, and the 5 most recent tweets appear on the sidebar of my broken body blog. anything i post to my blog will be mentioned and linked to from the other three. the general use of each will be according to as follows:
i will tweet moment by moment updates when there are things to share, including rhythms of my heart, of the day, wanderings of my mind, and urgent prayer requests; anything that can be said succinctly. facebook will be similar, with more latitude, more of my life. my blog will be overviews and musings, exercises in writing, my means of processing the experience at hand. caring bridge will be in part jen’s way of doing the same, although it’s likely too that longer synopses – things that can’t be said with 140 characters – will stand a better chance of being seen here first, so this will be a good place to get the details, the “facts on the ground,” especially during those stretches of time in which i am unable to give them. jen will also tend to be both more straight-forward and more positive than me, so if you ever get tired of my complaining, you have options. just sayin.
so, i think that’s it for now. no, i know it is. because it’s sunday morning, and i have yet to pack. more than that, the doors are closed to my room so i can finish this, and it’s not just sunday, it’s the sabbath; a day on which we here in our home make a special effort to be present to one another, and this is the last day i’ll be present here for quite a while.
so there’s really much more i could say, but i must pray and trust that i’ll have the strength and time yet to say it, and close with this:
i woke early this morning after one of those “deep and dreamless” sleeps, naturally, but with a very sore neck. there was the pain, but there was also a deep peace, a presence, like that of a large hand in which i was being held; ‘awash in a gentle swell of shalom’ was my tweet; like i was floating on the surface of a vast sea, lifted and lowered in a rhythmic rolling of the waters.
alone, but not alone.
pain and peace.
simultaneously, i hurt, and was being held by the holy God.
our prayer is that there’ll be less pain and more peace in the months to come. the days will be hard, but perhaps they’ll not be as hard as we imagine. what i know is this: so long as we are held by the holy God, even the hard days will be holy, and if the hard days are holy, there may be peace in the pain, and if there’s peace, perhaps the pain can be borne with patience.
praying for peace, and patience, and as little pain as possible.
and so encouraged to know that you’re in this with us, praying too.
here we go.
(see addresses below)
and, if you’re able/willing, please share this post somehow. i’ve no doubt if you’ve read this far you recognize the significance of these words for us. i’ll be unable tomorrow to do much of my regular reposting, so any help circulating this update would be appreciated. thank you.
Jeremy Erickson Family Benefit Fund, 8443 2nd Ave S, Bloomington, MN 55420
*gifts given to the benefit fund are tax-deductible
Jeremy, Jen, Ade, Eli, and Jo Isaac Erickson, 8121 4th Ave S, Bloomington, MN 55420