Posts Tagged With: Gratitude

Here We Go / How You Can Help

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:

obliteration.

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 (patrick.n.erickson@gmail.com), 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.

facebook: http://www.facebook.com/jeremyjohnny

twitter: http://www.twitter.com/jeremyjerickson

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.

jeremy

(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

 

 

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Categories: Cancer, MDS | Tags: , , , , | 40 Comments

This Blast Business

closing in on six months now, still no transplant, so where are we?

quick rewind:

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.

hmm.

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,

jeremy

 

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:

http://soundcloud.com/mgkvsbrd/02-blood

 

Categories: MDS | Tags: , , , , , | 2 Comments

Death, the Possible (Part II)

so there is a 20% chance that this treatment will kill me. and an 80% chance it will not. this is what it’s like abiding with the 20%, and this is why i do it:

 

i am often urged to focus on the 8o. it is implied that my consideration of the 20 is morbid and unnecessary. why i don’t agree:

 

20% is 20%. it is not what’s most likely, but it is not nothing. talk of it as much as i may, considering its probability, i do not give it the time it is due; i do not dwell on it 20% of the time. in fact, most of the time, much more than 80% of it, i am living in the expectation that i’ll be around for much longer than the months between now and the most difficult stages of the transplant. i live with the expectation that i’ll live.

 

however, the weight of the moments i give to considering the 20 is considerable, and so when i talk of it, it may seem as though that is all i do. it is not. but the impression it leaves on me when i do is no small thing, and so it must be talked about.

 

but we do not like to talk about it. we do not like the specter of death. we do not like its presence. we squirm and look away, talk about the weather and the game, insist that there is no possible outcome but the one we want, the one in which i don’t die. the one in which i live. to think of it any other way is intolerable.

 

that is not fair. it is not fair to the ones who live most viscerally with the numbers at hand. we need the opportunity to grieve, to prepare, to ready ourselves for one part of what could be ours to bear.

 

i have seen a man about to die denied the opportunity to prepare for his death by the surrounding community that insisted his death was not a possibility. he died. two weeks before he did he told me he had started planning his funeral, and had talked with a friend about building him a box, when the praying community around him insisted that to think of such things was a lack of faith, and that he should put these thoughts as far from his mind as possible.

 

he died two weeks later, and, though he passed quite peaceably himself, he left a confused community in his wake. his funeral could have made so much more sense had he been allowed the opportunity to interpret his death for us; if he would’ve been allowed to form his funeral in the image of his understanding of what was at hand.

 

as it was, his funeral was (to me at least), though beautiful in many ways, confused: he died. we prayed for his healing, we were sure it would happen, and it did not. what happened? perhaps he could’ve helped us make sense of it all. what a kindness that would’ve been. what a comfort!

 

therefore, what man, when offered an opportunity to prepare for his own death, to ready his heart for his passing; a chance to put things in order before it happens; the possibility to provide for his friends and loved ones his own understanding of his own death; what man would pass up on the opportunity to do that?

 

perhaps there are some who would; some who wouldn’t care to give time to such things, regardless of the outcome.

 

i am not one of those.

 

for me and my family, we must give our attention to the 20%.

 

for the first month after my diagnosis, we all felt as though i’d received a death sentence. we did not feel good about it at all. call it morbidity or negativity or a lack of faith, it was what it was: a fact. the numbers were a fact. our feelings about them were a fact. though the outcome with which we were weighed down was by itself not yet a fact, our feeling about it was, and it was something to be dealt with. how?

 

some would say the best way to deal with such things is to deny them, to not give them the time of day. i think you know how i feel about that. if not, i’ll say it again:

 

20% is 20%. while it is not most likely, it is not nothing, and should be given the weight it is due. i must finalize my will. i must have a health care directive. and while some may think it going too far, i feel i must also think through my own funeral, and write or record parting messages to my boys. difficult things. too far?

 

think about it: if it truly is a possibility (which it is – consider a six-shot revolver and a game of russian roulette – it is that), and this possibility was yours, and you had the opportunity to do these things, wouldn’t you do them? or would you leave them undone in the name of positivity? in the name of faith?

 

perhaps it is my melancholic bent and its effect on those near to me, i don’t know, but i will do these things. and i will not consider them an unnecessary downer or an indication of a lack of faith. nor will i consider the grief of those near me something to be quickly quenched for the sake of hope and wellbeing.

 

we, myself and my family, have needed to prepare for the 20%. we have needed to grieve. we have needed to put things in order. we have needed to nurture our faith in the shadow of what’s real (people do die, that’s a fact), and then steel our resolve and set our faces towards the cross that may be ours to bear. and then? and then what?

 

and then, we can set it all aside and set about the business of living. we can rise up and lean hard into the solid presence of the possibility most likely ours to abide, the possibility that i’ll come out of this alive; the possibility in which death will be something to which i can say, no. not now. not yet. i am going to live.

 

see, hope that denies death – that is something. it is hope. but when death comes, what then? what is it then? hope that looks death squarely in the eye and says, yet i will hope that even still i will live – that is a stout hope, one that will live on unchanged regardless of the outcome; one that will look into the age to come if it is deferred here and now.

 

for such a hope is bound to the real, to the present that is, as some call it, the eternal now. this is that kind of hope that has accounted for what may happen and has said nonetheless, i will hope. i will hope and will not be dismayed if that for which i hope is not realized now, for there may be yet another means by which my longing is to be fulfilled, and therefore i will wait for it with patience.

 

this is the hope to which i ascribe, the hope for which i strive to work through the 20, living eventually into the 80 that may be the gift we will so gladly (ever gladder for having considered the 20) and gratefully (ever more gratefully) receive.

 

soon to lean on the 80, i am

 

his with you,

 

jeremy

 

btw ~ i delivered a sermon at citylife on sunday. it felt to me the most important sermon i’ve ever prepared. it has been posted both on the citylife website (www.citylifechurch-twincities.org), and on mine, at www.jeremyerickson.com. click on “i speak” and look specifically for “in uz with abba: is it worth it?” it’s nearly an hour long, and communicates a lot of emotion (i had to push through tears for much of it). it conveys what we believe about suffering and God’s relationship to it. so get comfortable with a cup of joe, have a box of tissue nearby, and join me on my journey into what lies ahead. as a fair warning, you may not agree with everything i have to say. these are hard words, yet there is a haven of hope in them, and i hope you’ll meet me there.

 

~ oh, and i promise my next post will not be quite so “morbid.” (-:

 

Categories: Cancer, MDS | Tags: , , , | 6 Comments

Death, the Possible

so my most recent biopsy results revealed a disease holding steady. no progression, but still there, evidenced by deformities in the cells my marrow produced. the chromosomal study is still pending, but isn’t expected to show anything different from my october biopsy, as the cell dysplasia (funny-looking-ness) is the tell-tale sign of that rogue chromosome still at work.

 

my blasts (immature cells) have decreased, not significantly, but enough that the extra induction round of chemo (prior to the transplant chemo) will not be required. this is good news, as it means my body going into the transplant will be in much better shape than it would’ve been after the induction.

 

the surprise in all this, was that the transplant team at the U, instead of taking me for the transplant work-up this week, said they wanted me to do another cycle of the mild chemo i’ve been doing these past two months first. that includes this week of injections, and three weeks lag time for maximum efficacy. and that means that i get another month at home before it’s go-time at the U.

 

breathing easier now. we needed this extra time. one would think we’d be ready, given the time we’ve been granted already, but no, we weren’t.

 

these past few months have felt more like a vacation, me being so healthy, life feeling so normal. and with much to celebrate: birthdays, christmas, new years, our ten-year anniversary. jen turned thirty on saturday, a somber celebration in some respects. nonetheless, the possibility of it all coming to a close this week was a little jarring. believe it or not, we weren’t prepared.

 

on some levels we were, but not across the board. these extra weeks don’t have the aura of vacation anymore. it’s all preparation. the final descent.

 

so on we go, grateful for the extra time, the breathing room.

 

everything has a certain intentionality to it. i’m recording myself reading my favorite scripture passages for my boys, telling my stories, too, with a digital recorder and its little red light; we’re painting the room in which i’ll spend most of my home-time post-transplant, complete with a writing desk, a comfy reading chair, and a bed; i’m in the studio, tracking rough cuts of songs i’ve written but never recorded; we’re writing wills; we’re writing updates.

 

perhaps you sense in those preparations a long-term vision that looks in two directions at once. it does, because we must. perhaps i can unpack that here.

 

we’re given statistics to account for the possibilities inherent in a transplant such as this. i’ve mentioned these numbers before, stacked against me, but just barely. here’s what i mean:

 

there are two stats in particular that have caught our attention. one is in regards to the effectuality of the transplant as a cure for my MDS: 40 percent; there is a 40 percent chance that this will work. the other is in regards to the potential lethality of the transplant itself: the odds are 1 in 5 that complications will arise that will do me in.

 

imagine you were told one morning that if you walked out your door there would be a 1 in 5 chance you wouldn’t return. would you leave?

 

of course, in my case there is a killer in the kitchen that’ll get around to me eventually if i stay. and he may leave the house while i’m gone.

 

there are a variety of transplants, each with their own risks; each with their own set of numbers. mine happens to come with numbers like these.

 

there are those who would be quick to point out the 80% chance that i’ll make it. i, too, want to go there, but not so fast. here’s why:

 

because death is very real. it is especially so for us right now. with jen’s dad’s sudden passing this past fall, and not just his passing but the brutality of it; with the slow and painful death of the mother of one of our closest friends fresh in our minds, our boys especially deserve the chance to be prepared for every possibility, including this one.

 

another good friend, one who lost his mom to cancer when he was seven, wisely asked me what the one thing would be that i’d want my boys to know going into this. i answered, in retrospect, i would want them to know that my death did not take me by surprise. he said, yes, with tears, that’s it. that’s what made the difference for him.

 

he who passes over the opportunity to prepare for his own death, for himself and for his family, wastes a remarkable opportunity to connect the dotted lines between this life and the next. i will not waste this opportunity.

 

death is always a possibility. always and for each of us. and it must be looked squarely in the face as our own if it is to be rightly seen at all. the christian philosopher peter kreeft writes an excellent book on this, “Love Is Stronger Than Death.” i am only half way through with it, as it is one to be digested slowly, over time, and i’ve not had the time to read it in order to do that well. but i am certain he is leading me in a good direction, the progression from death as enemy to death as lover, through the faces of stranger, friend, and mother… too much to go into in the moment, but worthy of anyone’s time who is seeking better to understand the end to every life (including your own) short of Christ’s return. i highly recommend it.

 

in any case, how do we go about preparing our boys for that?

 

we’ve received good counsel, i believe, and it is at its simplest, this: fan into flame the kind of faith that believes God is God, God is good, He is in control, and He can be trusted to be with us everyday and always, even to the end of the age.

 

there is more, of course: crystallizing an understanding of the afterlife that is more alive than this life, directing their gaze to the resurrection of the dead and the age to come; of lions lying down with lambs, trees that forever bear fruit along streams that never cease to flow, brand new bodies that eat, hug, laugh, play, and possibly walk through walls.

 

but even all this is contingent upon the first, upon God’s goodness and upon God’s God-ness. His promises are moot if these attributes be not his.

 

so this is where we seek to guide their little minds: to nestle in the exhortation of isaiah 41, simply, do not be afraid.

 

my mind to, needs this kind of guidance. to fan into flame in my own heart the kind of faith we seek to instill in theirs. to be able to entrust my family and their care to the provision and the presence of God, with or without me. this is no small thing.

 

i’ve been there before. i remember. i couldn’t do it then.

 

one can be mindful of the fact that we’re no strangers to this kind of suffering. it was the same in another season that gave rise to the cause of this one. the cause of this cancer being the cure of another. say what you will about the ill-effects of such a cure, i’ll point out it still saved my life, gave me another seven years in which to live.

 

in any case, we remember, though not with the clarity that present suffering affords, the depths to which our human hearts can descend. we remember just how evil the evils that befall us can be. we are, none of us, guaranteed to be spared the full effects of the fall. we deceive ourselves if we think otherwise, and render our hearts floppy and unprepared should such evils be ours to bear.

 

should we refuse it our attention because it is not fair? because i’m young? because i am dad to three young boys?

 

a young father from my hometown, a divorcee, died of cancer leaving five children behind. death is not fair.

 

hebrews eleven, the often referenced christian “hall of faith” itself allows that “some were sawed in two.” a faith that doesn’t reckon with such a possibility will be a faith unprepared in the face of such an eventuality. it is, after all, the faith that survives such a fate that is being paraded in this hall of faith. that is a sober faith, indeed.

 

so we have sought in recent weeks to think on these things. and there is more thinking to be done. but we are ready, too, to move into a more hopeful disposition.

 

we think ourselves hopeful realists, not given to denial or despair, but rather committed to what paul miller calls the desert way: hoping for the best while living in light of what is. we interact with what’s real. we hope for what is not yet.

 

some might think our dwelling on the possibility of death a capitulation of faith, a downer to the aims of positive thinking. we think it right and proper. and difficult as all hell. it’s not much fun, either.

 

but it is there as a number on a page, a possibility that must be considered if it is not to be an opportunity wasted.

 

so do we say to our boys that daddy could die? we do not. but do we guarantee them that i’ll be okay? we don’t do that either.

 

we simply remind them that God is God, He is good, and He is with us always.

 

they know death is possible. they know what death is. no need to nurture an anxiety they don’t already have. rather, we speak plainly to the anxiety that is, and we say:

 

do not be afraid.

 

be sad. be prayerful. but do not be afraid.

 

then we bless them and put them to bed, and go to sleep ourselves saying the same thing over and over again.

 

do not be afraid.

 

there is, of course, an 80 percent chance that i’ll be okay; that i’ll be around for their next birthdays, an eleven-year anniversary.

 

good. we will hope for that, and better things too.

 

but we will not pass up the opportunity to see life in a whole new way. and if our faith be shaken, let what can be shaken be shaken. we can only start with what is. i’d rather know the little faith i really have is solid, than merely hope the great faith i hope i have is real.

 

God has been good to me in that regard, and i can honestly claim no great faith.

 

but i know the little faith that is there is really there.

 

and for that i can only say, thank God.

 

entrusting you with an unedited rant,

 

please be kind,

 

i am

 

his with you,

 

jeremy

 

 

 

 

 

 

 

 

Categories: Cancer, MDS | Tags: , , , , , | 10 Comments

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