Monthly Archives: April 2006

WED 26 April 06

It’s been nearly a year now. I recently checked my journal from last spring. I hadn’t written much, but I was sick a year ago. Memories have always been seasonal for me, like they are for most, so when the air begins to smell like it did one year ago – when I was sick and didn’t know it; when I was told I was sick, and that I’d get better; when I was cryptically explained how I’d get better – my mind can’t help but sweep through the experiences of this last year with vivid clarity, and take note of how different the experience has been from what my expectations were.

hatA4.jpgRound 1 (May-June 05) was supposed to be terrible, the worst of the whole deal. Instead, it wasn’t that bad. I actually wish some of the other Rounds had gone so well. Round 2 (July-August 05) we anticipated to be quick and easy, except for the procedures. The procedures turned out to be the easier part. And the whole thing was twice as long as long as we’d expected. Round 3 (October-December 05) was going to be long, we were told, but more or less like an extended break in the middle of it all – the eye of the hurricane – I’d be close to living a normal life, except for the fatigue. There was nothing calm about it. The reactions in my body surprised my doctors. I was the sickest I’d ever been in that Round, nausea for days on end. Did little but be sick for three full months. Round 4 (January-February 06) became the only delightful surprise of the treatment. For some reason, I thought I was going to spend the whole time in the hospital. I was there two days. Two days out of two months, and one of those months not only was I not sick, I felt the best I’d felt since this all began.

But then I began the descent into Round 5. It took me such a long time to recover from 4. Still haven’t, really. I was tired and susceptible to infections, and I picked up a bunch of them. Spent more time in bed. Back pain increased. I began Round 5 (March 2006-May 2007) fully expecting this “maintenance therapy” for cancer to be much like my maintenance therapy for Crohn’s: hardly noticeable. I expected Round 5 to be my opportunity to get back up, brush off the experiences of this last year, and march triumphantly (and gratefully) back into life and responsibility, health and vitality.

So since May of last year, it was my understanding that that first month in the hospital was going to be the worst of it all, Round 4 was going to be nearly as bad, everything else in between would be bearable, and Round 5 was going to be a piece of cake. In any case, I’d be up and back on my feet come the spring of 2006. I set my sights on playing softball with the Emmaus Men’s League in May. In my heart I charted a course for the year like I used to determine how I’d get from Minnesota to the coast and back on one of my tours, deciding before I left where I’d stop along the way. Often on the road, the experiences en route would redirect my journey, and the trip itself would change me. This journey through cancer has been like that, but much less fun.

Every Round of chemo affected my body, changing it. A medicine I took and hardly noticed last June would make me nauseous in October. You’d think a body might actually get used to chemo, and hardly notice it eventually. Instead, every time I’ve been required to bounce back from a chemo hit it’s taken me longer, and it’s been harder, than it did or was before.

couch4.jpgSince beginning Round 5 just over six weeks ago, I’ve had a cold and/or a fever of some sort for four of those six weeks. I’ve been immobilized by nausea and persistent pain in my back, legs, hips, and wrists. I look at the skin on my hands and arms, and it looks thin and wrinkly, almost transparent, like there’s not enough of me in it. For the last week and a half, I’ve mostly forced myself to eat, able to walk around and think productively for little more than three or four hours a day – two mid-morning and two just before bed. The rest of the day comes and goes as a blur of bed-rest, books, naps, and a two-year-old boy crying because his dad can’t get up and play.

I don’t write all this as some sort of emphatic tantrum demanding that my misery be noticed and counted among the worst. It’s not. I know that. I myself know of others who have suffered or are suffering longer and to a greater degree than I. Sometimes I actually wonder if I’m exaggerating, because when I’m telling people about it, I occasionally read such a response in their faces. Then I think I’m just being irrational about it all, complaining about an unreality. Until I pray. Then there before Abba, I realize I’m not exaggerating. I’m not exaggerating, and He knows I’m not exaggerating. In fact, He invites me to tell Him more. To tell Him how my heart just can’t bear any more. To tell Him how disappointed I am that I’m not well, and that the road to recovery seems so long and difficult.

That’s one thing I love about Him. Before He amazes us and stops our mouths in a display of His might, He invites us to pour out our complaints before Him, even in the ungrateful manner in which I so often do. And He listens. Then He stores up our tears in bottles. Imagine that, a heavenly storeroom of tears… yours and mine… they matter to Him.

littlebear4.jpgCall me an ungrateful fool, and I’ll say, “Yes, I am.” A tumor threatening to take my life in a matter of weeks was eliminated from my body in a matter of days without much consequence to speak of. I’m married to a princess and a queen and the most remarkable mother I’ve ever seen in action. God gave us Aedan and He gave us Eli in the middle of this mess, and He sustains us still. He’s shown me clearly how He holds those who are His, how He loves His own not because we’ve got anything to offer, but because we’re His, and that in the midst of all my ranting, all my ingratitude, and all my rage, I belong to Him.

So though an ungrateful fool, I’m still grateful, but not for everything. And the Bible says I should be. “In all things give thanks.” I guess that’s what bugs me. Not that the Bible says I should be grateful in all things, but that it does say that and I’m not. I’m not grateful in all things, and I’d like to be. I wish I were.

hatB4.jpgAnd I love to write. It’s one way I pray. It’s one way I come to understand what’s going on and what’s gone on in ways that don’t necessarily make sense but make peace with my insides. Yet right now I know I’ve written more than my body can handle. I’ve felt the burning in my wrists since the second paragraph, and experience tells me it will be much worse tomorrow. So I must end here.

But first I should make quick mention of my most recent phone visits with my oncologist. Doctor Hurley said I could ditch both my oral chemos for the next two weeks (can’t say how glad I am for that, and how I wish he’d say the same for the duration of my treatment). And then I see him again to begin a third 28-day cycle. There we’ll try to figure which drug is causing the most trouble for me (I’ve a hunch both of them are up to no good), and drop or adjust the dose accordingly.

Until then, we long for healing, for strength, and for gratitude. I’ll never forget when my mom first told me we could pray to be grateful. And I’ll never forget the first time I noticed God had answered that prayer. Pretty cool.

Hope you’re having a happy spring.


Categories: Cancer | 6 Comments

SUN April 23.06

I’ve got another fever today. It’s been a while, but it seems all too familiar. I’ve little muse to offer right now. Don’t have the wrists to type much, anyhow. I’d like to be better. Can’t imagine twelve more months of this. I’ve been nauseous off and on all week. Went to the YMCA Friday for an arthritis aquatics class. It was a bit funny; I was one of seven, the other six had been retired longer than I’d been alive. And it was a bit sad; they were all in better shape than I was. My friend Tom drove me to a youth retreat north of St. Cloud on Saturday. I spoke for an hour, feeling no pain the whole time, and it was good. But afterwards it felt like a truck had run me over. I napped hard through the afternoon. Made it to church briefly this morning before realizing how badly I had the chills. I’ll be making a surprise visit to the cancer clinic tomorrow for their help in figuring out what is going on, and what we can do about it. I’d much appreciate your prayers for clarity and discernment, and healing. Something has to be done. I can’t do this for twelve more months.


Categories: Cancer | 2 Comments

THUR April 20.06

It’s Thursday afternoon. I’m feeling a bit icky. And my body hurts. My back, my wrists, my shoulders, and my hip. But all over, mostly. My head is sludgy. There’s a nice breeze outside. It just rained, and now there’s a blue sky overhead. Not grey, like just a few minutes ago, but blue and clear, and fresh. You can see a mist over our neighbor’s roof, and my mother-in-law’s black Chevy parked on the street. The rain that just fell is evaporating. Nice, springtimey sun. Hot, like it was on Tuesday, when I flew a kite at the park, and sunburned my face.

kite.jpgWe made it up to see my mom and dad for Easter. Got together with her side of the family Friday afternoon. First time I’d seen some of them since before I got cancer. It was warm there. A real good day for reconnecting. My body hurt from the drive, and my head from last week’s steroids. We had to take a detour, and my insides had a hard time with that. I was in the zone. Prednisone. All messed up emotionally. Brittle and extremely flammable. The sun was hot that day, too.

Still ended up being a good drive. Listened to the book of Romans on a CD, and a John Piper message on anxiety. The weekend was good, too, though I wasn’t nearly as active as I was hoping to be. Aedan made up for me. He had Baba busy everyday through sundown.

The steroids shifted gears on Saturday, and I just got sad. Sunday I was on edge (pain is jealous company). And Monday, for our drive home, I was sick. My niece, Julia, came down with some sort of yucky bug on Sunday, and Eli and I brought it back to the Cities in our bodies. A cold of some sort has got me down again, on top of this crazy pain.

Yesterday I thought my back was going to just quit working. It felt like all my muscles were going on strike, protesting or refusing to work. I seriously expected a couple times to fold over from the waist up. Go limp like a marionette whose puppeteer just dropped the strings. My pain meds most often make me nauseated when I’ve got a cold. Strange, but the way it is. So I don’t take them unless I have to.

My right wrist stopped working this weekend. I’m not sure, but I think it was the combination of the performing I did last Monday with the writing I did over the following three days. It hurts to type. Hurts to drive. Hurts to hold Eli, or a book. This should be one of the shorter entries I’ve written in a while. I smeared numbing cream all over my wrists and donned a pair of new braces before sitting down to type. Earlier in the week I was sure Jen was going to have to write this one for me. She was willing, but she’s busy, too.

I dropped our digital camera last week. First time I dropped it. Only time I dropped it. Only time I’ll drop it unless I drop kick it to the trash. It broke. And the repair costs more than the camera’s worth. I totaled out my camera. So pictures here for a while will come from my phone. High quality that is.

I hope I don’t cost more to fix than I’m worth.

Pray for Jen and I this weekend, please. I can’t perform. I can’t write. But I can still speak (when I feel well enough to), and that’s what I’ve been invited to do at a Lift-Off youth retreat this weekend. I’ve got the stuff in my heart and on my tongue, but that doesn’t count for much if I can’t get there. I don’t feel up to it today. Pray I’d heal quickly. Pray that we’d be encouraged.

I’ve got much more I’d like to say here, but really, I can’t.

Aching for a better day,

Categories: Cancer | 2 Comments

WED April 12.06

jen&jer4.jpgIt’s been a busy week here. A crazy cycle of highs and lows. I struggled to prepare a message last Wednesday for our Lenten service at Emmaus. It was about hope. The message was hard to consider giving, yet nonetheless came forth quite naturally as I gave it, and at the end of the evening and for the whole next day I felt rather refreshed, not exhausted. That was nice. Doing things I enjoy tends to be like that: invigorating, not wasting. I hope to post an mp3 of that message on the website within the month.

You’d think that finding out about my hip last week might’ve made the pain worse or more noticeable. Truth is, the pain may be subsiding a bit. I haven’t been walking like I should, and I need more activity than I’m getting, but I busted my bike out of the garage tonight, and though a six-block pedal was about all I could muster, it felt good to work my legs without strain on my back. And the wind on my face (and I think I can say, through my hair) was a welcome plus.

I saw a physical therapist yesterday. The evaluation was numbing. I left quite discouraged by the extent to which my body has weakened this past year. Muscles all over tender to the touch, refusing to be stretched, tight or just plain wimpy. The first three exercises they sent me home with could be done in a hospital bed.

I’ve been seeing a psychologist, too. She’s a cancer survivor herself, working from the Health Partners Oncology department, helping other cancer survivors resurface in the working world. The challenges are unique, and it’s been good to chat through some of the intricacies with one who gets it.

Monday morning I went in for a chemo infusion again. Spent three hours at the clinic, got an IV and a vitamin B12 shot. I forget sometimes how that infusion wears me out. Monday night I shared a few songs for a special service at Emmaus. Three songs. Practicing and setting up that afternoon for about two hours prior to the service just about did me in. Bending over the guitar mostly, pulling on the strings, wears out my back and my wrists pretty quick (and my fingers have long since lost their callouses). I’ve been playing congas for Sunday morning worship from time to time, and oddly, that hasn’t hurt as bad. But by the time I performed Monday night, I was shot, and had no energy left to make any intentional effort to connect with those who had come. My songs felt so foreign to me. Not as invigorating as preaching the week before.

If those of you reading this regularly (and thank you for that) haven’t already noticed, I’ll state plainly that my mood for the last several months has been rather blue. Glum is the word I like best. This recovery is not coming as easily or as quickly as I’d hoped, and the mess in my head and heart is enough to distract the most disciplined of minds (which mine isn’t). The work at hand demands more attention and energy than I have to give, and the future is, as a result, looking more uncertain than it has in quite awhile.

Then there’s January. I don’t get January. Was it the steroids? The weather? It seemed as though we had finally been delivered into “places of abundance” like those in Psalm 66. I received in January all kinds of promises and signs that the sorrow was gone, the suffering was over, the trial was done. And I felt it, too. But it wasn’t. It was more like that scene in the third Matrix when Neo and Trinity are dodging enemy fire in a hovercraft, and they rise for just a moment above a thick blanket of black encircling the earth, beholding the bright sun and blue sky for a few short seconds – only to have their engines fail, and they drop back through the clouds and into the black. Trinity dies when they crash.

I’ve seen that happen in more than one life, in more than one person’s heart.

And I pray that this is not that.

One of the books I’ve had my nose in recently is by Brennan Manning – the ragamuffin guy – it’s called “Ruthless Trust.” I read one of his books back in 1998, and I count it as one of the few books outside the bible that have dramatically helped wipe some of the steam off the window between me and my Maker, changing my life in the process. This one may not be that, but I read something last night that stopped me on the page, and it wasn’t actually Brennan’s writing. He was quoting Henri Nouwen, another author whose books I’ve appreciated in recent years, but Brennan put it in context. I’m not sure I can quote all of it here legally, but here’s enough to reveal why it was like a punch to the gut:

“To be grateful for the good things that happen in our lives is easy, but to be grateful for all of our lives – the good as well as the bad, the moments of joy as well as the moments of sorrow, the successes as well as the failures, the rewards as well as the rejections – that requires hard spiritual work. Still, we are only grateful people when we can say thank you to all that has brought us to the present moment… Let’s not be afraid to look at everything that has brought us to where we are now and TRUST that we will soon see in it the guiding hand of a loving God.”

Good and true words are often like the book offered John the Beloved in Revelation. Eugene Peterson points out in “Eat This Book” that the taste of the book was like honey in John’s mouth, but it made his belly bitter. The truth of God’s providence in our sorrows, sufferings, failures, and rejections is a happy truth. It creates great sentiments. This is a doctrine, if you will – a truth about God – that I have believed all my life. I enjoyed the actuality of it in the midst of some temporal sufferings and with a heavy spirit many times before this cancer. But to trust the same in the midst of these things in this season, for some reason, is a bitter task. It is “hard spiritual work.”

What I am describing and feeling now is not, I believe, a crisis of faith. It is rather a trial of trust. It is not about whether I believe it to be true or not; as I’ve said, I do. It is about whether or not my heart will be glad because of it. It is about whether or not I will continue to seek God in spite of this heavy blow. About whether or not I will continue to love Him. And in that love, trust that He is yet working the good beneath the surface, or in the skies, above the black. And in that trust, to walk through yet another day, obeying the commands I know to be given, setting my hand to that which He’s given me to do.

That’s what Job’s story tells me, as does Joseph’s and Abraham’s. And in their stories we are meant to see our own. And I do. So there is hope. It’s just sometimes hard to get a good hold to.

wagon1.jpgThe good things I’ve been grateful for lately are many. Mostly time with friends and family. Ben and Andrea Monseth took us to the Orpheum Saturday for a live broadcast of A Prairie Home Companion with Garrison Keillor. The day was so warm and clear, and their company merely made us more aware of the fact. Earlier in the day I put together a Radio Flyer wagon for Aedan. “Aedan’s wagon,” he’d say. And he loves it.

Last Thursday we had our first spring thunderstorm here in the Twin Cities. It hailed a bunch and I brought in a bowl of “ice balls” for Ade to play with, and eat. Monday night after the service, once I’d made it home and had taken my overdue medications, Jen and I stood outside in our backyard with Aedan, beneath an almost full moon, a warm breeze sweeping Jen’s hair up in a playful toss, and life was good. Real good. The three of us laid on the hammock together for as long as Aedan would allow, and the little guy pointed out the moon, the stars, and the big dipper with the accuracy of a trained astronomer.

iceballs4.jpgI spent a good deal of time yesterday writing a muse about Eli’s smile, and I like the beginning of it very much – the part where I’m talking about Eli. Then I start writing about me and it all gets confusing. Or I write about God and it all seems rote. Yet it’s stuff I believe fully, I just don’t always feel that belief. I’m guessing you know what I’m getting at. I’ve posted the essay in the “Musings” blog. You can read it if you’d like.

Another good for which I’m grateful is that I love my church. I love the people there. I love and am grateful for the fact that I’ve been around there long enough to know the people and their quirks, the things that make them soar and the things that make them fly off the handle. I love counting them as friends, and not merely believers to whom I seek to minister. I love that I’m close enough to them to be bugged by them (and bug them), and required to learn how to get along and yet love each other genuinely and effectively. These are my friends, and this is “hard spiritual work,” but it is an essential part of the life we have been called to live as God’s people. It makes me glad to be given the opportunity to be a part of the family that is Emmaus, to be doing “this” with them.

wagon2.jpgSo I’m grateful still, I guess, but waiting nonetheless. Waiting for something to change. Waiting for my heart to heal. Waiting for the sky to open and my King to return. Waiting for a good deal at Menard’s on tree trimmers so I can cut down our bushes before they attack our house. While I’m waiting, I’ve really appreciated your letters, emails and comments, however short or profound. It’s somehow encouraging to know there are those of you out there, friends I’ve loved and folks I’ve hardly met, still interested in the story God is telling with my life. It is yet my prayer that you see Him somehow in it all.

Be blessed. And have a happy Sunday. Jesus went down, and He got back up.

Remembering this, I am…
Still His,

Categories: Cancer | 3 Comments

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