Posts Tagged With: Pain

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

I’m A Writer

Well, I suppose it is time again for me to check in with the wider world.

Once upon a time these postings were as necessary to me as morning coffee. Not only did they serve as the means by which family and friends came to know how I was while I was sick, but they were the means by which I kept alert to the events of any given day. Blogging kept me alive to the little things, everything potential material for the next post. I miss that sort of alertness – that attentive posture towards life as it happens.

But I haven’t had time for blogging these days. With great effort I’ve managed to focus my writing in a more fruitful pursuit. On the fifth of January, Jenny and I celebrated our seventh wedding anniversary. Seven years – in Old Testament biblical language, that’s one week. On the first day of the new week, Jen spent her first day at home when she normally would’ve worked, and I set about the task of writing my first book. And most days since then I have left the house for four or five hours each afternoon, parking my aching body at a coffee shop not too far from home, managing to peck out a page or two at each pass.

The process feels a bit precarious. Like each day great care must be taken to maintain the delicate illusion that I have something to say – something worth someone else’s time. As long as I’m able to sit down with such presumption, the whole thing moves along rather nicely. But there are other days, weeks even, where the whole affair seems a bit too presumptuous, and my words fail me. Nonetheless, by all accounts I am ahead of pace, or at least in step with it, as, at ninety pages in, I am nearly half way through my material.

The book I’m writing is a casual exposition of the convergence of two realities – suffering and the existence of a loving God – as it is played out in the biblical narrative, and to a certain extent, my life. But it is not autobiographical. That I hope to write after this book is finished. I picture it like this: occasionally I am invited to come share my story at churches here and there. I typically preach a sermon Sunday morning and then give a more informal concert and story time later that evening. The book that I’m working on now is the sermon, the book I’ll come to next is the concert.

For the most part, my hands are doing fine. They hurt and I’m still on pain meds for that and my back, but I got a nifty ergo-keyboard recommended by my friend Barnabas and it serves me well. Additionally, I try to make it to the gym three days a weeks to move my body just enough to make up for all the time I spend hunched over the keyboard. Still, it feels like I’m just a step ahead of entropy. Just a step ahead of the decay implicit in the sedentary life. Occasionally my fingers tingle. And my legs.

But I’m playing guitar again. Not much, but enough to get my calluses back. And while I don’t feel strong enough yet to lead worship from the stage, I am doing what I can to do so from the studio. Getting to know a handful of musicians from Mercy Vineyard in Minneapolis rekindled a fire in my belly to return to a project I started in concept five years ago. It’s called A Lutheran Liturgy.

I’ve taken the sung liturgy I grew up with and made each refrain the chorus for its own song, writing the verses around it and giving each refrain fresh context. When I’m done I’ll have a seven song EP that’s essentially a Lutheran worship service from start to finish, right out of the Concordia or Ambassador hymnal. And my first album in four years. These will be the only art songs I’ve written since the winter of 2002. I’ve written elsewhere of what it’s like when my muse starts to move again – like the river in Lucy’s Narnia when Aslan brings an end to winter – writing the book and producing these songs has been like that. A bit like springtime on the inside after a very long winter.

Speaking of winter, most winters are very hard for me. The spectrum of mood gets a bit heavy on the depressive side. This year depression stayed in the periphery, close enough that I could see it from time to time, but far enough away so as not to cause too much trouble. While medication and therapy has contributed to that, there’s no question we owe part of it to the kindness of a few close friends. Our benefactors, for one, who make it possible to be at least a little less worried about our finances these days (and for Jen to be home with our boys), and our friends Ben and Andrea, who invited us to join them on a week’s vacation in Florida. Having the sunshine to look forward to and enjoy while there cheated winter, denying its usual cold hold on my heart. My mom and dad stayed home with Ade and Eli and Jen and I took Jo Isaac with us to Orlando. Rich memories were made both places for all of us. And for the whole deal we’re ridiculously grateful.

I was given opportunity to speak to the student body at Oak Hills Christian College in February. The whole family came with for that, and our time there was memorable. Real good people. Jen, Jo Isaac, and I will be flying to North Carolina in April where I’ll be speaking at an Awana youth Summit. Prayer as I prepare for that would be appreciated. I’m speaking on service, which is why bringing Jen with is such a necessity, as she knows so much more about serving others than I do. Daily I’m reminded by her giving that I’ve got much to learn. You could thank God for her with me.

And my medical hobby continues, though with less gusto than previous years. Doctor Joel takes care of my back. Doctor Hakala continues work on my jaw (my molars no longer come together in the back – I chew only with the help of a spacer I wear while eating). Doctor Hurley keeps an eye on where the cancer used to be, and is still interested in what seems to be an enlarged thymus. Doctors Albie and Guibord monitor my moods, helping me out when they can. And Doctor Hotvedt handles everything else. The whole ordeal can be exhausting, but we’re managing alright, keeping appointments corralled into one day of the week rather than two or three. Thus keeping most the other days clear for writing.

So it’s official, for the time being anyway – a gentleman poolside in Orlando asked me if I was an academic, and privately, I wanted to laugh a little (I’ve dropped out of more schools than I’ve attended), but I answered him by saying, “No, I’m a writer.”

I’m a writer. At least that’s what I am these days. At least that’s what I do. I travel a little and I speak a little. And in my spare time I make music. Good grief. Read my postings from a year ago and last August and one can’t help but laugh just a little. I’m reminded of the psalmist’s prayer from psalm 90, and our prayer from less than a year ago: “Make us glad for as many days as you have afflicted us, for as many years as we have seen trouble.” God, it might seem to some, is answering the prayers of his people.

Gratefully, we are…

Still His,
Jeremy

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Years to Normal

So we prayed for laughter – a change in ourselves or our circumstances that would provoke such gut level jocundity. One such change occurred: A friend of ours has seen success in business in recent years. And he has committed to pay a good portion of our bills every month while he can to afford me the opportunity to write and Jen the freedom to stay home with the boys.

This is what every artist dreams of yet most often knows only in a dream. For us, for now, that dream has become a reality. This fledgling artist has a renaissance benefactor.

Our prayer is that, with Jen home throughout the week, and me not fretting about gainful employment, we may collectively focus our efforts on the writing of a book and the raising of our boys; finding and keeping a weekly rhythm that is conducive to both.

Of course there are abiding obstacles.

My immune system is crippled. I get sick more often and stay sick for longer than I should. I am tired a lot. I sleep ten to fourteen hours a day. My neck, back, and wrists are constantly nagging for my attention. And pain shrinks existence. Pain focuses self on self. It’s hard to fight this some days. And such self-centeredness is pervasive – not limited to the physical. God have mercy.

Good news is that Crohn’s is rather quiet – more or less under control in my body. We’ve figured the source of recent irritations to have been too much magnesium in my supplements, and too much acid in my belly. Easily fixed.

A recent routine scan (once every six-months) for cancer called for further investigation. A follow-up scan revealed a busy thymus. Well, you know what they say: “thymus money.” So for now, my six-month scan cycle will be tightened to one every three months – until they can positively rule out cancerous activity.

A doctor I saw today said it may take years to feel normal again. “Yeah, I know, but it’ll be two years next May.”

“Two?” he said. “For you, try twenty.”

Twenty years to normal.

“This is a very hard word, master. Tell me, how can this be?”

“Ten times the chemo, ten times the recovery.”

So I’ll be fifty before I feel like thirty again?

A hard word indeed.

Still, laughing more than a little, we are

Still here and still His,
Jeremy

P.S. Sample my preaching via the downloadable messages posted on my homepage. If it be a word that would benefit your community, consider sending me an email to request a visit. I’d love to come share my story and testify to God’s might and grace where you are.

Categories: Cancer | Tags: , , , , , , , , | 4 Comments

Sick-Boy Cycle

Jo Isaac – Joseph Isaac: “May the Lord add Laughter.” We are praying for laughter. Both for a change in circumstance – one that might yield the fruit of laughter – and of disposition – one that might be more prone to laugh.

Those of you who still read this blog know that my months-long silence is a digression from my posting pattern of the previous two years. This has not been for lack of a story to tell. There’ve been other reasons for my silence.

If I could I would tell of a long winter. Of psychotherapy and depression. Of prednisone induced Bipolar II and mood stabilizers. Of 12 months of not writing. I’ve had the wind knocked out of me, in a way. Gut-punched while stepping out of the ring. Things were supposed to get better. But since last summer and the completion of chemotherapy I’ve stopped writing to ease my painful hands. I’ve got weak wrists. Haven’t been able to seriously play guitar for two plus years. Any creativity’s been thereby stifled. Dreams and momentum are doubled over, gasping for air.

In October of last year, Crohn’s disease relapsed in my body. I’ve since had to begin taking 6MP: a mild chemo drug that effects the immune system in such a way that there may be a possible link to the onset of certain types of lymphoma. Like the kind I got the last time I was on 6MP. Though it’s not proven, and it’s hard to be certain, the medical profession admits it is at least a potential instigator/catalyst to cancer. I’ve seen several doctors on this issue. There’s really just no great way of treating Crohn’s in the medical world.

Every treatment comes with a potential catch. And though the cancer connection is as of yet hypothetical, it is nonetheless a mental/emotional blow. Feels a little like we’re starting the cancerous cycle all over again. The sick-boy cycle. Question: “Will I ever be well again?” The answer seems to be given in a Crohn’s relapse and its subsequent treatment: “Forget it, sick boy.”

Clinic visits and doctoring are still a significant part of every week. Weekly schedules revolve around such things. Makes it hard to exist as anything other than “the patient.”

We have been genuinely enjoying the summer. July at least. But the pleasure seems an event, or pocket/exception, in an otherwise stark landscape/era of ambiguous despair. This is either the beginning of better times, or another precursor to hope deferred.

Jo Isaac is a prayer, and perhaps part answer to that prayer. He has been a delight. Sleeps well. Takes a bottle. He has unlocked untapped affections for the other two boys in me. Love and delight has been exponentially multiplied in his presence. I’ve enjoyed being a dad more these days than ever before. We’re praying he is this way a harbinger of better times.

I write now out of that need for prayer. Prayer for direction. Clarity. Strength. Hope. Hope. Hope. While I was on chemotherapy, hope was based at least in part on the fact that chemo would one day be done and I would be healthier than before. That day long ago came and went. Didn’t anticipate chemo leaving quite the mark it did. Fatigue from the fight with cancer and its treatment has been known to last for years. This is made worse by effects of Crohn’s and its treatment. And this chronic, undiagnosable pain and its treatment.

This is the backdrop for the persistent question of vocation and provision. Man’s got to do something. To work. To contribute. While I desire most to be a writer and itinerant speaker (and music would be nice, too), my hands hurt and don’t work well. The same could be said of my heart. Speaking then is also made difficult. I was in ND in March, right at the bottom of a mid-winter sinkhole, my heart was depressed and slow to hope. Speaking that week was very difficult, and I have doubts about how beneficial it is for my audience when I speak out of such a place. And it is a place I’ve found myself in more often than not this year.

Other jobs are made equally difficult, even unattainable, by these persistent ailments. Our current living arrangement is nearly perfect and the least expensive way we could live in the Cities. Still, the sum of my disability check and Jen’s wages renders even this unsustainable. We would soon sink were it not for charity. We float only on the good graces of generous people. And these days, just barely. Family, mostly. And a few good friends. The gratitude weighs heavily on my heart for some reason. The words “thank you” get caught in my throat. The pursuit of wellness for this body has become an expensive venture. And the weight of it is often debilitating. So pray, please. Pray with us. Pray for us.

I would not be writing or posting this if there were not still some faith in me. We are expectant. We are praying and asking others to pray with us that God would provide something, somehow, in such a way that we would laugh. We are considering paths for our future and asking God for discernment, words, and courage. We are praying for new ways of living. Pray with us, please. And rejoice for the prayer, the promise, and the life of our little Jo Isaac.

Thanks for checking in.

Still His,
Jeremy

P.S. I will be speaking/preaching in Illinois and St. Michael, MN three Sundays in August. This also in the midst of yet another Crohn’s flare-up. Again, your prayers are more than appreciated.

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