Monthly Archives: May 2006

THUR 25 May 06

mug 2.jpgTonight the air glows a warm shade of orange… that otherworldly brilliance that shines on the right side of a storm. It compliments the browns and deep greens of every tree. Like the whole earth is bathed in amber. The rain falls like an old friend stopping by for a coke, and we just returned home from a casual bike ride to the drug store for some ice cream. All four of us.

And I am well enough to notice and appreciate these things. One year ago, such was not the case.

retreat.jpgTwo weeks have passed since my last post. They’ve been a good two weeks. Perhaps a busy two weeks, but good. The first weekend was our spring youth retreat. It was only a one-nighter, but I was at the end of my week of prednisone, and didn’t sleep much more than two hours that night. Saturday was already a crash day, and going into it short on sleep didn’t allow me to stick around past noon. But it was still a good weekend. Great, even.

Both the week prior to that and the following were full weeks for me at work. I’ve been able to put more hours in there recently. It’s dizzying at times, but has been a joy reconnecting with the church. The students have graciously accepted me back into the position after a full year of convalescence, and we’ve had some good laughs in the process.

shoulders.jpgLast week I was privileged to speak for the Association Free Lutheran Bible School’s last chapel. Between chasing Aedan down half a dozen times I noticed the spirit of worship there enough to wish Aedan was sleeping and I was free to indulge. But being a daddy’s not a bad way to worship either.

I still can’t play guitar for long. And when I do for any length of time, I case it with very sore wrists. I expect this to change as aquatics, massage, and physical therapy restore the major muscle groups in my body, removing the stress from the smaller muscles, like those I use while playing guitar. Still I’ve had to (by nature of sheer desire) play some recently. For that retreat and my grandpa’s funeral this last weekend. He loved the harmonica. So I played both at his funeral. I ache later, so much that the pain meds don’t do much, but it’s hard to quit something you love (and something so good) cold turkey. Even just for a season. I miss music. And I ache for the healing of my body. It’s been left a mess by the first four rounds of chemo.

road.jpgThis last weekend I went on a solo silent retreat prior to heading north for the funeral. I camped out at Inspiration Point near Fergus for two nights. They’ve been kind to me there. I was the only person on the peninsula for most the weekend, and the solitude was good. Spent time reading stories of the lives of David, Solomon, and the prophet Jeremiah. Ate broiled walleye at a nearby restaurant. Hiked up Inspiration Peak. And drove the back roads of central Minnesota listening to John Piper’s Job Poems: “The Misery of Job and the Mercy of God.” Just like I did last year. Just before cancer reared its head. The poems are a work of art. An inspired work. Do your insides a favor and find it and listen to it whenever you get a chance.

bunny hunt 3.jpgThen another two days with my family in Roseau: beautiful weather, and just enough time to chat and laugh and love and be loved by the folks who’ve known me longest. The only bummer was Jen and the boys weren’t able to make it up there with me. My brother and I took care of a minor problem my mom was having with disappearing flowers (notice trophy photo). I actually felt really bad about it until my sister said something like if she could shoot a gun she’d have shot it. That was my sweet little sister. You’d think these were vampire bunnies or something. They were eating Mom’s trees. That is a big deal. So I came home a hero. Forget that I somehow beat cancer – I saved Mom’s flowers.

family E3.jpgBoy it was good to be home! And to feel well while there. It’s been a long time. Even Easter just over a month ago I was there, but I wasn’t well. Couldn’t even hold a golf club then for the pain in my wrists. And as I mention this, I realize that all this writing isn’t the best thing right now, either. I wrote four pages this past weekend in an effort to recap the lessons of this last year. Sent it out yesterday as a letter to the masses. If for whatever reason I didn’t have your email addy and you’d like to read it, it should be posted soon as a link from my “Cancer” page. Otherwise, send me an email and I’ll forward one on to you.

As a brief rundown of current stats: I’m on a pretty slim regimen of huge amounts vitamins, Crohns medications, and daily narcotics for pain in my hips and lower back, legs, shoulders, and neck. My last chemo was nearly three weeks ago as an infusion. I’m scheduled for another the first Monday in June. That week will also be the reintroduction of one of the chemos that has been so hard for my body to handle, but at a reduced dose. I’m to do this through May of 2007. Next Friday I’m being scanned for traces of the cancer, and to determine whether I’ve got any signs of osteoporosis due to the steroid therapy. I told the youth group that I’d be in a hospital gown for four hours Friday morning. I don’t look good in hospital gowns. They’re too big for me. But who does look good in hospital gowns?

3boys.jpgSo I’m happy these days. Though often tired, and regularly in a good deal of pain. The first two weeks of every four-week cycle are a little tricky emotionally as a side effect of the steroids, but beyond that, and even then, the overriding emotion is one of hope and expectancy, and gratitude for what feels a bit like a second chance.

Thanks for checking in. Next post will likely be on the other side of those scans.

Still His,

treeeli.jpgPS. We’ve posted two new free downloadable mp3s. One’s my most recent song offering, written before Christmas of 2002; it’s a poem that compares the synthesis of heart and mind (the acutality of faith) with C.S. Lewis’ “Strawberry” the horse getting wings and a new name. You can find that one on the music page (“Fledge”). The other’s a message I gave at our church during Lent. That one’s on the homepage. Enjoy.

Categories: Cancer | 1 Comment

TUE 9 May 06

drippychin5.jpgIt was one year ago today: a routine clinic visit for a fever and cough, followed by x-rays, CT scans, a consultation with a pulmonary specialist, and a hospital admission eight hours later, proved to be the first wave in a series of events that would radically alter our day-to-day interactions with the activities of “normal” life. Cancer turned “normal” on its nose, spun it around in circles, and kicked it hard once dizzied enough to falter.

Normal still isn’t normal. Partly because it seems to change consistently from week to week. In my concerts, I used to joke that the only thing I was consistent at was being inconsistent. I know that reality now more than ever.

We’ve got five lilac bushes in our backyard. Every May they blossom and smell up our neighborhood. Lilacs in bloom invoke worship. The fragrance stirs souls. I swear. Instant love for someone, somewhere, appears upon the landscape of the heart like a warm spring sunrise and a cool morning breeze, and I think everyone feels it to some degree. But few know what it is. Even I write about it with words that may not describe it rightly for everybody. Yet there’s something at the core that I believe is common for each and all: the whispered voice of God, speaking sweetly, “Do you remember me?”

dadnadefront5.jpgI missed that last spring. I remember the weekend before that Monday in May 2005, noticing the lilacs about to bloom, and coming home from the hospital over one month later, finding the blossoms wilted and fallen to the ground. This year it’s not that way. Aedan and I were outside last night after supper, wrestling in the grass ten feet from the lilacs already in bloom. As we both giggled hard, I filled two lungs full up with the air around those lilac bushes, and I felt good. And I remembered Him.

The gratitude that God seeks in the hearts of those who are His is a gratitude of trust, not merely a thankfulness for the good things in the midst of all the bad, but a thankfulness even for the bad things (James 1:2-4), based upon a deep trust that He intends even the bad things for our good (Rom 8:28) and a genuine faith in His ability to do that. This is a faith that requires much of the one to whom it is given. It is incredibly hard, and it is a grace, being found only in those who have first somehow experienced the immense goodness of Him in whom it is placed.

Faith is not what we believe, it is trusting the one in whom we believe, and trusting Him still when what He allows really makes us hurt. However, it is the battering and bruising of that faith that hurts the most. It is not the mere intellectual head-nod to truth that matters most to God, it is a deep heart trust. It is the supernatural ability to maintain a right spirit and right actions in the midst of every inclination to do otherwise.

JDade5.jpgMy writing cannot honestly portray the reality of that battle in my life these days. And that is a battle that must be fought. In the midst of it, my good comfort is that God hears and listens to my complaints, and when I cry He cries with me. When the brokenness of this world, my body, and my soul causes me to slam my fists into the table His slam the firmament of Heaven. I smell the lilacs, and I remember this God who bottles my tears when I weep, crying with me, and laughing heartily with me when I’m healed. And I imagine Him somehow wrestling on that grass with my boy and me, covered with fresh grass clippings, happy to be alive.

Doctor Hurley convinced me to continue therapy Monday, and he expressed his commitment anew to manage the treatment in such a way so as to ensure I can do therapy and life at the same time. This third 28-day cycle that I began yesterday will be done without the two chemos I take at home, limited to the IV infusion I took Monday with one week of steroids. Next month we will try to reintroduce one of the oral chemos at a reduced dose, completely ditching the other. In June we also plan to take a bunch of pictures of my insides to be sure the cancer hasn’t returned, to measure the deterioration of bone in my hip socket, and to determine whether I’m developing any traces of osteoporosis. But in any case, we seek to move ahead both with the process of healing and the continuation of my treatment.

3oncouch5.jpgThere was one other thing we did that day in May one year ago. Sandwiched between all the x-rays and CT scans we visited another clinic for an ultrasound of Jen’s belly. Inside was the tiny frame of our little Eli. We had been concerned when we found out that Jen was pregnant that the chemo I was on for Crohn’s disease would cause some sort of complications for the little lad. The early ultrasound was in light of this. Not only were test results positive that day, but one year later that little lad rolls his near fifteen pounds around on our living room floor, smiling and giggling with his mommy and big brother, and daddy’s not at the moment lying in bed.

Today, I remember all this, and I remember Him.

Still His,

JDeli5.jpg(Confirmation Sunday went well. Giving the message was an honor and very gratifying. It was recorded and may be posted online along with my Lent message soon. And again, many thanks to the AFLBS crew that came over this weekend to paint our house. I hope to express in person how grateful we are for your work sometime early next week.)

Categories: Cancer | 4 Comments

SAT 5 May 06

What? Start chemo again next week?

Not by the hair of my chinny-chin-chin.

(I wish it were that simple.)

inwindow5.jpgI do have hair on my chin, and all over my head. And in spite of the fact that I’ve been neutropenic since last Thursday – and therefore limited in public activities (no aquatics) – this break from chemotherapy has been otherwise all good. I recovered my appetite last weekend, and gained a few pounds finally. My body’s still tight and in relatively consistent pain, but I’ve been able to move around some: go for a quick bike ride, pitch to my boy, and do a little physical therapy (I made it to my first weekly appointment in three weeks last Tuesday). Life begins to feel “normal” again, like we remember it once being.

We’re to see my oncologist on Monday morning, and to talk through what to do with the rest of my treatment. The status quo of these first two cycles just won’t work. A maintenance round intended to be a time of healing and gradual restoration cannot be so difficult as to render me bed-ridden and unable to work, much less thoroughly stalled in the process of healing. Not for another twelve months. Not a chance.

It sounds, however, as though there are adjustments we may be able to make. I am on three chemo drugs every four weeks. One is an IV once per cycle and doesn’t seem to bother me much but make me tired for a day or two. The other two are pills; one I take twice a day, and the other, twelve every Friday. These two bug me bad. Not sure which one’s causing the most trouble, but I’m most often nauseous to the point of eating very little, becoming weak and immobile after several days, and eventually despairing of my inability to begin rebuilding my body in the midst of such perpetual illness. The final medication is a steroid I take for five days every month in a very high dose. It messes with me emotionally bigtime, both the week I’m on it and the following in which my body adjusts to days without it. Altogether, they’ve succeeded in making life rather difficult.

This consultation should be telling. We hope for a thorough education, and a better understanding of the function of this round, and the extent to which it is deemed necessary for sustained remission. It’s become a cost versus benefit kind of decision, and we seek clarity and wisdom in making whatever move necessary.

As mentioned many times before, the tumor’s been gone since last June. The type of lymphoma with which I’ve been bequeathed required a persistent onslaught of chemotherapy and radiation for two years, the first four intense rounds expiring within the first year, the last round lasting the duration of the second. It is that round that is now our concern.

painters5.jpgIn the meantime, we’ve enjoyed the company and generous work of two vans full of Free Lutheran Bible School students. Thursday, Friday, and today, Wayne Floan organized paint days at our home during which we all have hoped to see the primary color of our rambler turn gracefully from this blue to that green. The work done already suggests we may see the final presentation of green early next week. Big thanks to everyone who has contributed in whatever way these days. It truly is a treat to be the recipients of such generosity.

I’ve been preparing a message to give at Emmaus for our Confirmation Service this week. Spent much muse on faith born of gratitude and trust born of faith. I posted a comment or two beneath my last update that clarifies some of this. I considered including a paraphrase of both in this blog, but thought I’d save time by just making mention of it here, and asking you to check it out. It’s a big deal to me.

We’ll post again next week as soon as we know what’s going down. Pray that it wouldn’t be my white blood count. I’d like those back.

Still His,
(ps. just for fun, look at this. I wrote it way late last night when my sleeping pill had all but done me in… It sounds like I’m saying something important, but I’m not really sure what it means…)

adeplane5.jpgI should like to write about something unwritten, something unwritten which should perhaps remain unwritten, and would actually, were it not for the fact that I am going to write it now, for it should be written, I say. So, let me say plainly that writing is an adventure. It is an adventure in the way of writing, in the way of writing merely to write, and of writing merely to be read: to forget and be forgotten, or to remember and be remembered. It is the why we write. And the why predisposes us to certain actions in response to the answer given us by others as we ask, well, what do you think?

Categories: Cancer | 4 Comments

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