9/27/2005

Huck Finn snuck in on his own funeral. He wasn’t dead, but everyone thought he was. Ever wonder what that’d be like: to sneak in on your own funeral… to listen in as your closest friends give your eulogy? Once in college, my friend Wes gave my eulogy for our speech class. For effect, he had me lying on a table just behind him. It was really kind of funny. But I wouldn’t call it surreal. I’d save that adjective for the experience I had this last Sunday night as our church hosted a benefit concert for Jen, Aedan, & me. I was well enough to be there as several of my closest friends performed and led worship for a packed house. Most of them had a little story to tell or something to say between the songs they sang. Some were funny. And embarrassing. Some just plain made me weep.

A stretched-out season of cancer & chemotherapy does some strange things to a guy. There’s a whole lot of waiting, days of cancelled or changed plans, a good deal of discomfort, and the occasional barely bearable pain. There’s hope that’s shattered, hope fulfilled, hope that gets knocked down and slowly rises again. There’s much time for thought, like it or not (a guy can’t watch movies forever). The occasional doozy sweeps through – an experience, or more often than not, a reaction to an experience – that serves a blow to something I thought I knew about myself, taking a particularly comfy paradigm out at the knees.

To speak specifically, I’ve had a hard time with things, but not the things you might expect. Ticked off at traffic and day-to-day inconveniences like never before, I’ve been troubled by what bugs me. Here I am, by the grace of God, surviving a life-threatening illness, and I’m going nuts over the littlest things. Not just grumpy, either, but shaking my fist at God from time to time. Not about cancer, but about things as insignificant as poor customer service at a suburban DQ Grill & Chill. Haven’t felt like the most pleasant, edifying person.

The backdrop for this is the relentless care and concern of entire communities for my family and me, emails and cards referring to a deep and deepening faith made so obvious to many by this whole experience with cancer, and an initial two-month-long, fortifying encounter with God in His Word and through His people, affirming that this affliction was from Him and for His purposes – changing me and the people around us for Him and His glory.

Then my pharmacy refills the wrong prescription and proceeds to tell me it’s up to me to fix the problem, and I’m crankier than the unredeemed on a bad day. In July, I was deeply disturbed by my response to the disappointments in my life at the time. I became very sick, and was troubled to the core by my heart’s inability to grasp firmly the promises of God; my incapacitated soul, refusing to be comforted by the freely offered Spirit of Christ. And even now, my slowness in embracing what opportunity I have to follow hard after God, preferring the comforts of this world to the deeply fulfilling presence of the Almighty.

Then I feel like a fraud. I feel like there’s no way people would love me like they do if they really knew; if they could observe regularly what I’m like on my not-so-good days. I even begin to consider how difficult it must be for a holy God to put up with me, positive His frustration with me must run right alongside the temptation to bail; to write me off as an investment badly made.

At the benefit Sunday night, I cried much. There were many worship songs I could not sing, for I felt them too deeply. Specifically the songs that declared our need for a Savior in the same breath as God’s Provision. The gifts our friends offered us with their music and their words, and the sincerity with which they offered them, moved me deeply. For of all the people in the room at the time, they were among those who knew me most intimately, and at my worst. Yet they were the ones speaking clearly of their deep and genuine love for me (sometimes with little more than their tears), and their gratitude for the visibility of my faith at this time.

After Jen and I returned home later that evening, I was still a bit numb to it all, suspicious that people were somehow misled, seeing in me someone I wasn’t. Then a very liberating thought began to settle in… a whisper first spoken in the preparation for the evening, then again a little louder during the concert, and in the love expressed by all there that night… finally audible as I sat at home with my son in bed, my wife and I holding each other on the couch: “perhaps all these people really do know who I am – the bad with the good – and love me still.”

I’ll never forget when it became clear to me that Jenny loved me this way. First it made tangible to me the relentless and wondrous (meaning it made me wonder, as it was beyond comprehension) love God had for me, and all those who are His; as it seemed Jen had every right to hold my past against me (I wrote about it in a song once: “I was the hand that destroyed the dream I once inspired…”). I figured God had all the more right to do so, and the Bible said that in Christ, He didn’t. And doesn’t. My love for a God who could do this became more real that day than it had been since I was a little kid.

It wasn’t till much later that it occurred to me I should marry someone who loved me like that. And my slowness remains still, for it took what amounted to a happier version of my funeral – without having to die and all – to remind me again how we are loved as God’s children. The care of the congregation made tangible to me the relentless love of God the Forgiver. And I offer this portion of my story to you as a reminder that He is this to mankind.

There is injustice and hatred in this world, and we are often very much a part of it, on one end or the other. We are in need of deliverance – from ourselves and the rage and apathy around us – and there is a Deliverer whose justice is and will be fulfilled: in us, or to us, depending on where we are in relation to the Shepherd who gave His life for His sheep. He invites all to follow where He leads – we, His sheep, in the care of a Good Shepherd who understands sheep. Call me small-minded if you’d like, but I believe this is what the Bible teaches, and I believe it is right. And I am both grateful and in awe that there is a God who offers this kindness to men. Men like me, who don’t deserve it in the least.

And I am thankful for the friends who made this tangible to me again. Not just those who were at the benefit in Bloomington last weekend, but all who’ve been so kind to this undeserving fool and his family, here, at home, and wherever. Thank you all for so much!

Concerning cancer and my continuing journey away from its clutches, I am through with 3 of what will be 8 months of the “intense” phases of treatment. The tumor is gone. All subsequent therapy is intended to deep-clean every corner and closet of my physical being, so as to assure I will be among the 90% of those with non-Hodgkin’s lymphoma to attain complete remission.

My third round, a three-month course including 5 spinal-taps and 2 weeks of cranial-radiation aimed at my central nervous system, was postponed once again. This is my second week in a holding pattern as a result of my not-so-resilient white blood cells. My counts were just a hair too low on Monday to begin. Apparently, 18 months on a mild chemo drug for Crohn’s disease, prior to my cancer diagnosis, has made my bone marrow rather lazy.

I don’t mind. Another week to prepare for the fall and the final stretch before baby number two is welcomed here. I cleaned out our garage yesterday. Might be the first time we’ve parked a car there in two years. It’s crazy how many cardboard boxes one can accumulate with a wee one growing in and out of things in as much time as it takes to dispose of all the packaging.

Aedan’s sick again. An autumn cold this time, we think. Please pray he heals quickly and that I may once again be spared of whatever it is he has.

Jen’s well and is enjoying the calm there is after launching a ministry year with an abundant staff of eager and gifted volunteers.

The three of us spent last Friday on the north shore. Took a day trip to enjoy the fall colors and the big lake. Aedan learned how to say “boat” and “bridge” in one afternoon. Spent some time at Gooseberry Falls tossing rocks into the water. Aedan got his first pair of sunglasses and hammed it up for Mom & Dad often. It was one of those memorable trips so necessary to sustain sanity through such an unpredictable season.

My back continues to be bothersome, but not debilitating. Still on pain meds and muscle relaxants, I’m eagerly looking forward to the day I can spend time with a physical trainer/therapist learning what I can do to both rightly relax and strengthen the muscles there so messed up due to all this bed rest and weight loss. My hair continues to grow in overnight, a touch grayer than before, but the same cowlicks I’ve had since I was two. Radiation is likely to thin it out some, if not take it out altogether. Hats are good. I like hats.

Many thanks to Jeff Olsen for writing another article for the Roseau Times Region. Good to have someone with a bullhorn letting everyone back home know how things are here. You’re a good storyteller, Bro. Thanks for considering ours a story worth telling.

I like fall. Hard to believe the summer’s gone already. Guess that means I’m that much closer to life in the next chapter, on the other side of this fire. Trees that look dead in November look very much alive six months later. Fernando Ortega sings a song called “I Will Wait for My Change.” In my slowness, I will trust the faithfulness of my God, and I will wait for my change to come. As I feel the chill of this season, the foliage of my assumptions – the faith I thought I had – withering and falling away, I will remember spring, and how good it is when buds blossom and branches fill once again. Sometimes faith must be received as a gift only God can give. I spread wide my branches once again, and wait for my change to come.

Gifted only by the kindness of God, undeserving,

Yet grateful again,
Jeremy

“My Portion & My Cup” is available for order. Please see the music page for disc and ordering information.

9/6/2005

I think I washed my hair today.

It’s been just over two weeks since I last spent a night in the hospital. I’ve been on chemo since then, but because we had a sufficient “trial run” in July, we’ve been managing to hold the nastier side effects at bay. Crazy as it may sound, I occasionally forget I’m battling cancer.

This past weekend my parents were down from Roseau. Jen, Ade, & I took them to the State Fair Saturday. I had a corn dog and cheese curds. Good grief. Ditching one cancer for another, probably. Boy, was it good! I felt I was justified by my need to regain some weight. I think. Better things to do here though than explain my fair food binging.

My head started sprouting little hair buds a few weeks back. I’ve got that pleasant, soft, fuzzy duck thing going on. Could almost pass as fashion. Almost. May grow till Christmas. We’ve yet to see what a few weeks of cranial radiation will do to wee little hair buds. We’ll know more in a few weeks.

Aedan’s getting bigger, brighter, and increasingly fond of baseball. He won’t sit in front of the television for more than ten minutes of anything other than Finding Nemo and a full nine innings of any ballgame. He’s got his own little ball and bat soft enough for inside, and he wants to pitch to me whenever I’m on my feet. He’s got a good arm, too.

He cries for me lately when he’s sad. “Dado” has turned into a full-fledged “Daddy,” and he says it often if circumstances aren’t altogether to his liking. I get that. As he’s growing up, he digs spending more and more time with me. We’ve got all kinds of new things to explore together. All kinds of things I’ve gotta teach him. And the older he gets (at least these days) the more ready he is to soak it all in.

Jen’s healthy and happy. Can’t imagine doing this without her. Or doing much of anything without her. We’ve become inseparable companions these days. Man alive! How good God was to, within one glimpse of Adam, say, “It is not good.” It would not be good. Some things a guy can do alone. Some guys are maybe all right doing eight months of cancer and chemotherapy by themselves. Not me. Nope. Call me a wimp. I need that girl.

And she’s pregnant, too! Crazy. Baby number two is warming up nicely. Due early December, an overnighter together at Labor & Delivery sometime between Round 3 and Round 4 would be nice. I like being there for that sort of thing. Jenny’s currently smack dab in the middle of a busy ministry season. As the director of Children’s Ministry at Emmaus, these weeks give her much to do.

My ministry duties have been rightly delegated. My buddy, Andy Britz, and our Associate Pastor Tom Gilman are taking great pains to be sure the Student Ministry at Emmaus comes off the ground this fall without a hitch. They’ve quite a team to make it happen, too. A handful of us met last week, and another meeting with a larger team is scheduled for this Wednesday. I probably won’t be able to be there – for that or for a good portion of the coming couple of months – but there are some good ideas in that bunch, as well as good people, and I have little doubt it’s going to be a great year.

So why all the delegation if I’m feeling so good? Why my absence?

What has become “a new kind of normal” for us is something to be explained often. Life is different now. And sometimes I forget. “Normal” has a way of being forgotten.

As I write this, I’m sitting in the Cancer Care Center at Regions Hospital in St. Paul for my third hour this morning (it’s actually afternoon now). I came in for one of my two (sometimes three) weekly blood tests and chemotherapy. My blood counts came back low. Everything was down a bit. All my major counts: white blood cells (infection fighters), platelets (blood clotters), and hemoglobin (raw energy) were under par. This has become normal to me. I guess you could say I’ve become accustomed to life in the slow lane.

Because of my 2 years on Crohn’s medication prior to Cancer, my doctor has set a standard for transfusions considerably lower than the norm. Nonetheless, today I wound up staying the day for a hemoglobin transfusion. I’ll be here till four. Last Thursday I ended up sticking round for an extra three hours for a platelet transfusion. Sometimes I go home without my chemo, with specific orders to rest till my counts recover. Then they send me shots that I give myself daily to flog my bone marrow into making white blood cells. The shots make my bones ache.

The days are unpredictable. Hour by hour I make plans and change them. Naps are necessary. After transfusions, I’m down for two to three hours. And more often than not, the chemo takes me out a day or two later, if not physically, then mentally. Stamina’s unpredictable. I catch a cold and fight it for weeks. Other infections put me in the hospital. I have to watch how I’m digesting stuff like a hawk might watch a forty-acre field for a mouse, and I take a variety of medications accordingly. Some make me nauseous, some keep me from getting nauseous (most often by knocking me out).

Sometime in the next two to three weeks (I don’t know when yet) I’ll begin Round 3 – a twelve-week course of chemo medications and radiation therapy. It begins with the first of what’ll be five spinal taps. I don’t seem to do spinal taps well. The last one required nearly five days in a hospital bed. Hard to say. Often depends on which chemo drugs I’m on at the time.

This is our “new kind of normal.” While I find the education fascinating, I really don’t much enjoy talking (or writing) about it. But I want people to understand. I want people to get why I can’t be there; why I’m resting often; why when I’m not resting I’m taking every opportunity I can to do something fun and memorable with my family; why I often go a week or two without writing about cancer and chemo here on my website (or anywhere else for that matter)… it’s an incredible (and embraceable) privilege to merely be able to live life, and I so badly want to live it when I can.

And I want people to understand how to pray. I realize (Lord willing) I’ll have much life to live when I’m through with all this junk. And I’m so grateful I’ve the opportunity to jump through all these flaming hoops intended to cure me of the illness that bade me jump in the first place. As God hears and responds to the prayers of His people, the poisons sent through my body to thoroughly rid me of the cancer are doing what they’re supposed to do while leaving the rest of me alone. And in the midst of it all, God is preparing me, making me, for the life there is to live on the other side of this battle.

So with that I’m about through with this update. Not as much because I’ve said enough as it is because the premeds I took before my transfusion are making me very sleepy. But there’s one more thing to mention before I post this and let another week or two pass before writing again.

When this all began, it was mentioned I could receive mail via Emmaus Lutheran Church in Bloomington (our home church and place of employment). That is still true. I only mention it here because I’ve received many cards and packages all addressed to me, “c/o Emmaus Lutheran Church.” I’ve cut out and kept some of those address labels both because of what they say and what they represent. Jen & I feel so cared for by our church. They’re hosting a benefit event for us on September 25th at 7 o’clock Sunday evening. It’ll consist primarily of a silent auction and a concert by some of my closest friends (more details are available on the Emmaus website – you can follow the link from my homepage). I am hoping to be there. It’ll depend mostly on when we start Round 3 and how I respond to the initial spinal tap.

Jen & I are so grateful for the camaraderie we’ve felt with so many of you these last months. With your cards and gifts, your words and prayers, you’ve been a sustaining grace in our lives. Thank you, thank you, thank you! I realize the gratitude expressed here has its limits. A broad ambiguous thank you to so many people doesn’t carry the personal warmth that I would like to convey. For now, please know that it is intended. Ample opportunity to express it fully will come in time.

With much gratitude,

Jeremy

P.S. As I write this, I’m very aware of the adversity that has been brought on our country by hurricane Katrina and her aftermath. My experiences these last months have sharpened those senses attuned to the sorrow, disease, and suffering in this world (Sudan, India, the Delta, etc…). For now I am only more aware. There may be some of you curious how this all fits into my worldview – one in which God not only allows cancer, but authorizes it… intends it for His purposes. That’s all I can say for now. This medium is currently meant primarily for communicating my battle with cancer and the lessons I’ve learned in the midst of it. Perhaps this is a lesson I am still learning. My heart and my prayers nonetheless plead mercy on behalf of the innocent ravaged by this storm.