Posts Tagged With: Fatigue

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,

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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,

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.

Categories: Cancer | Tags: , , , , , , , , , , , , | 11 Comments

There Will Be More

00lollipop.jpgThank you faithful friends and onlookers. I know you’re out there. I’m still here. There’s much to say, but I’ve been relatively unable to say it. At least on the page. I should maybe start podcasting. Yapping’s just not the same. My wrists have been bad these past months. Haven’t been able to write much more than a few short emails. I do seem to be getting stronger altogether, just not in my wrists. Pain’s not vamoosing either. I snagged iListen for my Mac, but my G4 can’t keep up with it (or me) yet. I speak a sentence three times before I realize it’s working on what I said, then it spits out three different versions of that sentence – none of them making any sense at all. Sometime in the next week or two I hope to post a page. Been busy with clinic visits, rehab, and work on a room in our basement to serve as a music/writing studio for me someday. Yes, someday. Still hoping, trusting I will get that new body. Or at least this one made new. Please check back again soon, and don’t stop praying for us in the meantime. 00poindext.jpgDifficult transitions abound. Struggles in the head, heart, and hands. Pocketbook, too. Have posted a message from a three part series I delivered back in August. The other two I’ll put up once it seems the first has gotten out. The JE myspace (link to it from my homepage) now has two video clips from FLY 2005. Long overdue. But it’s fun now to see the cueball. New photos on this site are also long overdue. I have hair now. And get haircuts. Would be much easier if I could hold a mouse. Someday…

Still here (and His),


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

Rant I (My Aching Back)

I apologize again that it’s been so long.

Believe me when I say it grieves me that I cannot write more these days. There is much to tell. For so many people, blogging serves as some sort of therapy. It is no less for me.

As a dude with a poetic bent, writing is almost as primal as breathing. I do it to live.

shades.jpgRegardless of the medium, the act of writing is always a conversation – with myself, an audience, or God. And as such, I always come away with a deeper understanding of something.

These days of limited strength and mobility – especially in my hands – I miss it like a fish might miss the water.

I can only tap out about a sentence or two at a time. It is painful, and it wears me out.

So I cannot take the time to follow this worthy tangent any further. This makes me sad.

This past month has been a hard one. Released from the predictable routine of weekly chemo crashes and monthly prednisone hits, I anticipated a slow but progressive regaining of strength, and a gradual diminishing of the pain.

It has been anything but this.

I began regular trips to the Y therapy pool. I’m not exactly swimming. What I do is more like floating, but it is helpful nonetheless. I’ve been told this is what I need to do to get my joints and muscles working again.

I stretch and I breathe. I do arm circles. I’ve been doing this for an hour a day, four days a week, for three weeks now. Is that over doing it? Is that not enough? It’s really about all I can do if I still want to walk to my car when I’m done. My back is so stiff and swollen. And hot. And it hurts. Did I mention that it hurts?

If this is the pain I must push through to get stronger, to get better, so be it. Like the two weeks of conditioning practice at the beginning of the football season. Coach says it’s good for me, so I do it. Even though it feels like I’m breaking. If this is that, then I’m glad I’m getting better.

But I remember that kind of pain. And sometimes I’m not so sure this is it. This feels more like injury. Like a sunburn in the sun at eleven in the morning, with six hours of UV to go, and no shade or sunscreen in sight.

cennlake2.jpgI have to ration my steps. Like I only have so many per day. One Saturday night we took the boys to the park. We walked too far one way and I barely made it back. Two days later I thought I was going to pull muscles in both ankles walking to the kitchen for Tylenol.

It is very hard doing life right now. I understand the process of healing from the cure can be a long one. My oncologist and friend said it may be August before I begin to feel significantly better. But both he and another doctor I recently saw shrugged their shoulders at the apparent worsening of my pain and the lessening of my strength.

It’s not just my back. It’s my shoulders, wrists, hip, legs, and neck. I get muscle cramps and spasms when I sit or stand for too long. All this while still on 24/7 narcotic pain meds.

So I began seeing a chiropractic doctor last week. Longtime friend and neighbor Joel Fugleberg is a doctor now. He’s got a clinic in Chanhassen and a home here in Bloomtown. I called him up on a Wednesday in a fog of pain, and asked him if he could take a look at my back.

My first adjustments were, plain and simple, out of this world. Two cracks in my neck released a rush of life down through my chest as though blood started flowing to the rest of my body for the first time in two years. Just incredible. And after a week of this, muscles around my spine have ditched some inflammation. I’ll be seeing him regularly now for the next several months, and look forward to describing all this in greater detail when I can.

I am simultaneously seeing a physical therapist who is not frowning upon my chiropractic affair. Rather, she seeks to works with what Joel is doing to rebuild strength, stamina, and proper function in my back and the rest of my body.

As to what exactly is wrong with my back (and subsequently the rest of my body), there is no one thing that can account for it all. We know I have spinal stenosis and several compressed and mildly herniated discs in my lumbar region. I have an abnormal curvature in my spine. A bone spur and several slightly pinched nerves in my neck. There’s an aberration in my left hip joint and minor osteopenia in my bones. And for years now, I’ve had seasonal inflammation around joints all over my body.

Major muscle groups in my trunk and limbs have either atrophied or stopped firing when or in the way that they’re supposed to.

How this is related to the cancer is loosely assumed. Except that I spent much time in bed these past two years. And when I was up and around, chronic fatigue didn’t allow me the liberty to spend extra calories on correct posture, so little muscles along my spine have been working overtime. My medical records show a cumulative height loss of at least half an inch (some as much as three-quarters) since I was initially admitted in May of 2005.

I am shorter now than I was in seventh grade.

So this is what we have to work with. I’ll say this briefly to end this entry on a positive (albeit staccato) final chord: I feel very cared for by the handful of health professionals that are contributing to my recovery right now (Naomi, Joel, Trisha, Randy, Roy, Lucy, etc…).

I am very appreciative of the fact that each of them recognizes and respects the worth of the other, acknowledging the intricate integration of each of their fields (massage, chiropractic, occupational, oncological, cranial-facial, dental). And that they understand collectively that health is multi-faceted and modern science is young.

It may take work on account of the patient to bring both alternative and widely accepted therapies to the same table, but it also takes willingness on the part of the practitioners to work together. I am in the care of such people.

tinfish.jpgMy hands have done too much. This is the work of several days of writing. Again when I can I will post a lament about chemo brain, fatigue, toxins, finances, or the adverse effect of all these things on family life. In the meantime, please be praying for me and mine.

Still His,

PS. Thanks to those of you who let me know you’re out there. Some surprises, to be sure. I wish I had the time and all else to write a little something to each of you in return. I hope that this will suffice. Oddly, there are still at least another thousand regular readers who remain nameless to me. Perhaps this is something I must get used to. Regardless, warm welcome to all of you who find yourselves here from time to time.

PPS. Keep in prayer my good friends Kanoa Boroos and her husband, Jason. Kanoa was diagnosed last week with a brain tumor that is to be treated with 6 weeks of radiation. Her prognosis is good, but radiation is unpleasant, nonetheless. She currently has 35 staples in her skull and a beautiful head of hair. Not to mention a gracious spirit. God bless you, Kanoa.

Categories: Cancer | Tags: , , , , , , , , , , , , , | 11 Comments

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