Life, the Likely

the reports of my death are greatly exaggerated. so said mark twain upon learning his obituary had been erroneously printed in the new york journal (he hadn’t died, if it must be said), and so say i, upon hearing of distant acquaintances who’ve spoken as though my death is imminent and inevitable.

 

it is not.

 

i can readily understand how one could come to such a dire conclusion by a casual perusal of my recent posts. “death, the possible” two times over, if taken as the whole of all there is to my story, could certainly lead one to believe that i am indeed walking into my grave.

 

but it is not the whole of my story.

 

i have very deliberately sat with the possibility of death longer than what most deem comfortable and perhaps longer than what some deem right. there seem to be a few following my story for whom the only way to approach this thing is to banish all thought of death and bank on me making it through it all unharmed.

 

for some this issues from a genuine hope for me, a severe hatred of all things evil, and a deep faith in the goodwill of God.

 

thank you.

 

but i wonder if it’s not for a few something like the proverbial whistling in the dark – a denial of the death that comes to each of us eventually; a radical discomfort with the thought of God allowing something as unfair and as tragic as the death of a young dad leaving three boys (whose grandpa just died) and a bride (whose dad just died) in a space made emptier and much sadder by his leaving.

 

i don’t know. i do know that it is one thing to read of women who by faith receive back their dead; it is another to read of those who for faith were sawed in two.

 

and i know that to reckon with the possibility of death, the inevitability of it, not just any death, but your own, is something like seeing smoke drifting out from behind the curtain between you and the holy of holies. it is something like knowing the shekinah glory of God is just around the corner.

 

a terrifying, sacred space.

 

a moment altogether outside of time.

 

hold the hallelujahs and cue holy, holy, holy. the writer of that letter to the hebrews, after jesus had revealed the heart of the father, still says we come to a mountain that smokes; that our God is a consuming fire.

 

he is good, but he is not tame.

 

i mention the possibility of death again and again not to be morbid. i’m as eager as anyone to hope for and uphold a more optimistic outcome. i merely aim to pull back the reins on an unnecessary rush through a somber and sacred process, one that can conclude with a glimpse of God so satisfying and strengthening as to make it possible to pass through the valley of the shadow with faith intact.

 

i would not want to rush others through their laments who in lamenting may see God in a way that strengthens faith and endows the ability to suffer well. i pray you would want the same for me.

 

jen and i have cried and grieved and come out the other end with fresh resolve and a sober but hopeful anticipation of the days to come. i have cried twenty minutes with my eight-year-old crying on my lap. together we’ve experienced God in the midst of our grief in ways so intimate and weighty, that we have renewed confidence in the presence and plan and purpose of God in our pain.

 

if there is an open meadow anywhere in this forest through which we travail; an opening in the trees through which we can see the stars in the sky; a space in which our souls can breathe and resolve to walk in, through, and out of the darkness that surrounds us, it will lie along the “dimly lit path” of lament (m card), and nothing calls forth lament like facing down your own death in the light (light?) of leaving the ones you love.

 

so, i think, my point being plain, i will conclude my rant.

 

and i can end here with this: while my work preparing for the possible is not finished, and while i feel the weight of this approaching season now more than ever, i am nonetheless ready to round the corner into a more hopeful tack.

 

for not only is it quite possible i’ll live through this, it’s also most likely that i will.

 

 

Pedal Pusher

Again, there are limitations on the extent to which I can be creative or insightful with this entry. The real good stuff takes time to distill… me sitting at a keyboard, staring at the screen, juggling words and ideas in my head like plastic balls in a bingo machine… until they land on the page where I arrange and rearrange until they make sense… As mentioned before, these days I must ration my words. Rather, I can only sit and stare and type for so long before my joints begin to decay and my muscles grow moss. They go rigid like tree bark, and it gets that much harder for me to move any at all.

And right now I need to be moving. Doctor Joel says movement is life. My physical therapist says my job is to under do it, but to under do it everyday. On this point these two warring factions (physical therapy and chiropractic therapy) agree: a rolling stone gathers no moss – even if it’s rolling, ever so slowly, uphill.

The general trajectory as of late has been pleasantly upward. In spite of some recent setbacks, there seems to be some notable progress in how much energy I have to spend and the things I am able to spend it on. Most significantly, I spent the better part of two days this past weekend alone at home with my boys, who collectively burn more calories in an hour than I burn in a whole day. What’s more, I actually enjoyed it (though I’m recovering from the activity, still).

This is a mark of progress more valued than any medical test might give me. One of the more difficult things these past years has been the extent to which I’ve been unable to be “dad” and “husband” for my busy young family. It’s one thing to be absent and unable, it’s quite another to be here everyday with my hands tied.

And there’s more to say about that, but not right now. There’s too much else. And my hands are only given so many letters.

I spent what letters I had between the last posting and this one on preparations for a talk I gave at the Roseau County Fair grandstand a week back. It’s a neat deal. Apparently forty years ago a guy on the fair board proposed having the fair initiated every year with a grandstand event called “Church Night at the Fair.” Every church in the county is invited. They’ve been doing it ever since.

There were two things particularly special about the evening this year for me, besides the fact that I was the guy speaking. The first was that I shared the stage with lifelong friend Tami Fugleberg (now Osweiler) and her singing group, Sweetwater Revival (her Star Spangled Banner made me cry). The second was that I was speaking to what seemed like half the population of my hometown. More specifically, these folks knew more of my story than most, and many of them had played a part in it at one time or another – most many years ago.

It was a bit difficult deciding which message and which testimony to give for such a crowd. So many things to say, so little time to say them, and the desire, of course, to say them well (add to that chemo brain and it’s really a wonder I made any sense at all).

All said (and there’s always more to say), if it was communicated that suffering and death are really bad; that Jesus did something profoundly great by stepping into it and dying himself; that resurrection is real and really good; that we partake of God’s salvation by humbly asking for and gratefully accepting the help we need (in Christ and through others), and that we participate in God’s salvation by giving the help we can, then… I think I said enough.

I hope it was also clear (as I told so little of my story and touched upon it so briefly when I did) that Jen and I both are genuinely and deeply grateful for the love and support we’ve received from those folks… you folks… thank you.

And I am disappointed we didn’t have the opportunity to chat with as many of you as I had hoped to. Still the few conversations, glances, headnods, hugs, and handshakes that happened were good. Real good. Like the first bite from a box of chocolates: good in itself, but best because there’s so much more to be had.

Speaking of talk and chocolates, there is an application of self-discipline that is new to me these days. Much self-discipline is packaged as an avoidance of something bad for the pursuit of something good (Subway instead of McDonalds). But most self-discipline in my life has been a regulating of good things so as to keep the good things good (eating a bite of chocolate in one sitting is good/eating a box of chocolate in one sitting is bad… too much of a good thing, anybody?).

So it shouldn’t come as a surprise to me that I have to nearly give up writing and reading – even healthy conversation (the eternal kind that makes time irrelevant) – these days if I am ever again to enjoy them at all. It seems my sedentary lifestyle prior to cancer (driving, recording, writing, reading, playing guitar and piano) has teamed up with the inactivity of the past two years and rendered the whole of my body in real bad shape.

Way back when, I may’ve been in no shape for softball, but I could still drive around and play music. Then when I wasn’t fit enough to regularly perform, at least I could sit and write or record. And when that became difficult, at least I could lie in bed and read. Now all these things are difficult – almost impossible – for any significant length of time, without incredible amounts of pain.

Or if they aren’t (topical analgesics and caffeine go a long way), the end result robs me of any justification. It’s hardly worth it.

Last Saturday night the Worship Circle (100 Portraits, et al.) was in Minneapolis doing an outdoor thing at the Fallout. They had hand drums set up all over in front of the stage for anyone who wanted to pound out a rhythm during the show. I stoically refrained for about an hour. Then the spirit moved, I cracked, and whacked a djembe, then a conga. Five minutes maybe. And it hurt like crazy, and it was so much fun. But as soon as it was over, I regretted it. I regretted doing something I so love to do. Like I’ll regret spending the better part of three days typing out this update. This isn’t fun.

Artists in general want to be carried away by whatever it is they’re doing (except whatever it is they’re supposed to be doing). I am no exception to this (I love getting lost in a book, conversation, making music, watching a movie, mowing the lawn… just about anything). Which means that if I am to heal and be strong again, considering the amount of attention I must give to the healing, there can be little else. The fewer potential distractions, the better.

I’ve always preferred physical activity to be a peripheral activity – like the optional add-on at the end of a good day of cerebral busyness. But these days, to be able to do much of anything that requires sitting or standing in one place for a while, I must first spend the better part of every day moving, stretching, swimming, walking, and driving between clinics. Moving, and moving the right way and for the right amount of time (not playing a djembe or chucking suitcases or toddlers), is primary.

If I’m not proactively healing, I’m not only not getting better, I’m getting worse. There’s no such thing as coasting… yet. Like pedaling a bicycle down a dirt road: as long as I’m just crawling along, I can’t stop pushing. But if I keep pumping, I’ll likely pick up enough speed to coast for a while without slowing to a standstill.

And so even writing this is an indulgence, a distraction. But I write now mostly to point out that although I am pedaling uphill, I am picking up speed, nonetheless. And the ride down the other side is bound to be a rush, as long as I keep pedaling.

I think I’ve found a routine – a regimen that works – and as long as I keep all those gears spinning I continue to feel better. Physical therapy, pool therapy, massage therapy, and regular realignments with Doctor Joel, bolstered by consistent sleep habits and decent nutrition (and a cupful of supplements and vitamins everyday) give me the momentum needed to heal. You might imagine how difficult this is to keep at with the blessed interruptions of toddlerhood and the unpredictable impulses of an artist. Whenever I fall out of rhythm, it takes some time to recover, like I’ve got to make up for lost ground.

Our one week trip to the northland was that: the car ride both ways, the time at a computer screen tapping out a message, the standing (or sitting) and yapping with old friends at the fair or in town, and the carefree (if not careless) running around the yard with my boys and their cousin Julia. But it was worth it. It was real good spending time with family at home. And I’m not nearly as shot as I’ve found myself many times after such activity in recent years.

But it’s time to be pedaling again, and it’s a bit difficult hitting stride.

So as much as I’d like to write until I happen upon something clever or profound, it’s more necessary that I hang it up before my hands turn to branches and my hair to leaves.

Being it’s likely I won’t get to this again for another couple of weeks, I’d better briefly mention just a few more things:

1) Uncle (I’ve been uncle-ed three times over this year…). But I mean I give up. I think I’ve been convinced to get one of those voice recognition programs to “write” with (it’ll at least keep the ball rolling). I use an Apple, so the options are limited. iListen is $300. Anybody know of anything cheaper? Write me.

2) I’ll be speaking the first three Sundays in August at Living Hope Church in St. Michael. It’s a series on Suffering and the Sovereignty of God. Pray the prep goes smooth, the truth would be clear and received, and that the record button will work. I’ve given this package three times now, but this is the first time for an entire congregation, and not just the students. I’m really excited about this, but can’t spend as much time at the computer putting it together as I’d like to.

3) I get a root canal tomorrow.

O goody.

Grateful I can still yap. At least when nobody’s got their fingers in my mouth.

Still His,
Jeremy

P.S. I turned 31. I did. Special thanks to Jenn Olson/Spadine for the night at Bandana Square for my Jen and me. And to Erika and Danka for the ridiculously yummy German Chocolate Cake. I just ate the last piece yesterday. It was STILL incredible. How about another root canal…

P.P.S. More rants to come. I haven’t said much yet about Chemo Brain. I will… when I can remember what it was I was going to say.

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.

Regardless 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.

I 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.

My 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,
Jeremy

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.

So this is it.

This is my news in a nutshell: I am done with chemotherapy. Recent scan was clear. No cancer. I will be monitored every six months for the next several years – five years to what they call a total cure. Statistics say it’s a coin toss. I’m not much into statistics.

I am grateful. Really. I’m still here. I’m still sane. My wife still loves me. And we’re not broke. Yet.

It’s just this: Being done is a big deal. And it’s far more complicated than marking one last X on the calendar and throwing a party. Believe it or not, finishing has been rather anti-climactic and a bit of a crisis in itself (I’m not making this up). It may have much to do with the fact that the turnaround isn’t instant. Life isn’t normal. What’s normal? I still hurt. Life has changed. I have changed.

There are complex emotions that come with the completion of 2 years of this stuff, and much to process in head and heart. Trouble is, I process on the page, and I’ve been both too exhausted and in too much pain to write any. These sentences are the first words I’ve tapped out on a keyboard in two weeks.

Those of you who’ve been following this know how badly I want to be writing a book. Writing for this blog has been a big part of that process. When I can’t write, I feel like my mind slows down. Right now I can’t write. My wrists flinch when I even get close to a keyboard. I hurt. I hurt more and more consistently than I can ever remember hurting. It’s just plain discouraging. And I’m so tired. I don’t much mind being unable to use my body if I can still use my mind, but neither seems to be too cooperative right now.

A note relevant to this conversation would be that I recently read there’s now a medical term for chemo brain. Funny thing is, I can’t remember what it was.

More when I can.

Still His (and still here),
Jeremy

PS. Celebrate with me however you’d like this Friday evening, when I would normally swallow nine chemo pills, but won’t.

PPS. This may seem indulgent, but isn’t intended as such: I’m wondering who in the world is reading this? Besides my mom, I mean. I get numbers, but I don’t know who might be behind the numbers. Being my audience here, your presence has been a catalyst for the telling of my story. Whoever you are, thank you.

PPPS. Please pray for us. (As if I need to ask)