Monthly Archives: August 2005

Round 2 ½. Week 2.

I’m at home now. I give myself a shot in my leg or my belly every night before bed – after loading up on anti-nausea medications intended to ward off the nasty side effects of the poison. So far, so good.

I feel a bit nauseated from time to time, but with proper pills taken at the right time, the most I get of it is this strange sensation that I’m not entirely all there. Like the beaming-bay on old Star Trek episodes, somewhere in between “Beam me up, Scotty” and “Good to have you back, Captain.” Most of the chemo drugs I’m on right now target my DNA and mess them up pretty bad. Like going at one of those science fair models with a baseball bat. Colorful rods and spheres all over the floor. Looking more like an art exhibit than good, hard, science.

My last hospital visit (8/15-20) went relatively well. Probably my best spinal tap yet (not sure exactly how to throw a party for that sort of thing). I was pretty sick for a while, though. I began throwing up Wednesday or Thursday – headaches and all – and at the same time started a cocktail of medicines that pretty much put me out for the rest of the week. If I was awake, I was bent over a bucket. But for most of my stay, I was happily unaware of much.

Came home Saturday (8/20), and took a few days to really gain my strength back (I lost my hard earned 8½lbs there). It’s midweek, and I’m still prone to need a good two-hour nap every afternoon. That done, I don’t feel too bad. I have noticed, though, this dangling collage of obligation and responsibility swinging ever nearer my throbbing head. Or perhaps more significantly, my unruly gut.

It’s been a pretty decent summer at Emmaus – inasmuch as Student Ministries are concerned – I’ve mentioned before we’d come upon a good batch of volunteers with hearts to see the church be the church in this way. And so with much work on the part of many others besides myself, the kids enjoyed a week in Colorado, two canoe trips, a video-scavenger hunt, a week of helping with vacation Bible school, and weekly gatherings of worship and time in the Word.

With school starting again, things get busy with student ministries. We’ve been anticipating that, of course. But the time I intended to give to the preparation for the coming season was otherwise eclipsed by a rather miserable month of hospital stays and blank-faced days at home in bed. My concerns have been assuaged somewhat however by the good graces and liberated schedule of a good friend of mine. Veteran youth director Andy Britz has agreed to come alongside our ministry at Emmaus and provide some sense of gravity that may be lost in my absence.

I begin cranial radiation this fall, as well as a regime of weekly spinal taps, for what looks like could be a full three months. It might be that I’ll be even less available for this coming season than I was for the summer months. Andy will easily fill a central role of our already well-equipped team ready to do much more than merely maintain the ministry till I return. I anticipate a fun-filled, deeply rewarding, and even life-transforming couple of months for our students and the adults who work with them this fall. I share this here, because I believe it is likely a direct God-response to the prayers some of you reading here have prayed for our student ministry at Emmaus. So thank you. Thank you. And don’t stop.

Lest anyone wonder – or forget (myself, included) – in the midst of these hospital stays; scrawny, bald, snapshots; and lamentations from a sick man’s bedside, I am slated to fully recover (and be healthier than ever before) by sometime mid-winter. This assurance is not to be mistook for an easy recovery, however, but an expected emersion from a positively yucky experience (I’ve a better than 90% chance of complete remission – which is where I am tentatively already – only soon I get to ditch the “life enhancing chemotherapy” and live like all you non-cancer types!).

Some of you may have noticed I haven’t been as “devotional” in my writing as of late. I’d like to explain…

The first 40 days of this ordeal (beginning with my admission of May 9th) were glazed and made shiny by what I believe was genuine grace and a deep faith given by Father God through Christ, His Church, His indwelling Spirit, and His Word. In all the harsh reality of the Cancer, Jen and I felt that our hearts were literally suspended above whatever peril there’d be apart from His holding us.

July brought on the feel of a very different season. The suffering became more intense. My heart didn’t respond so automatically in ways that were right. It became more work to bring my broken heart to God, and in the process, a greater demand was made for honesty – not with men, but with God. I believe God has been silently asking some intensely revealing questions of me – about my heart, my desires, my take on who He is and how He does things – and the resulting conversation is so real, so raw, and so unspoken that there’s no way I could reproduce it here. I trust the result of it all will eventually be seen in the life I end up living on the other side of this thing.

So those of you who pray could keep praying for my heart – fickle and frail – and my flesh – wimpy, stubborn, and so prone to loving everything less than the good hand of God. I still believe this illness is less about my body and more about my heart, and that the promised fruits will somehow contribute to the fulfillment of God’s Kingdom. Yet as true as that is, it doesn’t make the suffering any less painful, or the sorrow any less real. Truth by itself just sits there and mocks, like the Law without the reality of Jesus and His suffering or the fulfillment and freedom that reality brings.

Truth must meet faith – faith given by God – and I need that faith given to me these days. There’s no doubt when the truth of God’s Promise is met by and bound to a faith that says, “Yes, I believe it,” there really is sustaining power. There really is tangible hope in the One who, more than any other, suffered unjustly…

“Who for the joy set before Him, endured the Cross, despising its shame…”

So that’s where I’m at – still trusting that there is an Author to this story and One who makes faith perfect – though I’m not always altogether happy with Him or the way He does things. I’m nonetheless deeply and unspeakably grateful for the goodness so abundantly evident in my life: my family, my church, my friends, my little boy, my bride and the baby inside her… my health, when I have it, and all the care I’ve received when I don’t.

The sustained and sustaining buoy of hope, often lost in the waves, swept away by the storm, slippery with mire – yet found again and again – is ours in the promises of the Son of God.

I am still gratefully His,
Jeremy

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8-14-05 Update

I haven’t been to the clinic in ten days. Thursday morning Jen & I woke up to what nearly felt like life before all this. It’s been another one of those “in between” times – no chemo, no infections, no side-effects – one of two weeks this summer that I’ve felt better than I have for years. Great appetite. Plenty of rest. Good times with family. If it weren’t for my bald head, achy muscles, and these plastic tubes hanging out of my chest I’d probably be led to believe the whole cancer thing was just a bad dream.

But it wasn’t. And it’s not.

Tomorrow I’m back in the hospital for the first few days of the second half of Round 2. The second half looks just like the first half that put me in the hospital three times in three weeks. This scheduled admission is a precautionary measure. We’re hoping to avoid a repeat of the mess that was the month of July. We’re hopeful we’ll stay ahead of things this time. Hopeful this pass won’t be quite as brutal.

Just prior to the last weekend in July, I came down with a fever – a fever after two weeks of declining white blood counts and a blood transfusion for red blood cells. We were required by necessary precautions to make a trip to Regions at 2 o’clock in the morning for what turned out to be a five-day stay at the hospital.

It really wasn’t so bad. And the nursing staff at Regions 8E is so kind to me it’s honestly a rather agreeable place to be (if you have to be in a hospital… one night they brought me Dairy Queen). Within half a day my fever was gone and I remained only to wait out the rise of my white blood count.

The catch came late in the day Sunday when my lower back began to spasm. In the four hours prior to my midnight bedtime, my nurses gave me all the pain medications I had been previously prescribed just so I could relax enough to fall asleep.

An hour and a half later I woke up in so much pain my teeth were chattering. I was sweating and crying. Groaning, actually. It was crazy. I’d never been in so much pain before. I’ve been rating pain for nurses for three months now, and in my worse I’ve only admitted to a 5 or a 6. This time, as my back was throwing my entire body into convulsions, and my nurse was scrambling to call a doctor for more morphine, I remember thinking, “So, this is what 10 feels like.”

That was nearly the only thought I remember having for the 40 minutes or so (and 2 doctor calls) that it took for us to bring the pain under control. In the morning – the morning I was scheduled to go home – I was told I needed to stay for an MRI. The pictures didn’t reveal any cancer (which was great), but they did suggest I had some back problems not related to the cancer.

The docs sent me home the next day with pain meds, a disc of my MRI photos, and a recommendation to see a neurosurgeon when I could. It wasn’t that they were suggesting surgery, just that a specialist would be the best to explain to me the myriad of things wrong with my back.

As I mentioned, the back stuff is unrelated to the cancer, but it’s safe to assume that the days and weeks in bed – because of the cancer – aren’t exactly good for it either. Mild movement’s been recommended. Thankfully, I’ve gotten some of that.

We drove north to see my parents last weekend. And I ran (sort of trotted) around the yard with Aedan chasing his toy plane (who’s toy plane?). There we parked my Beretta – my car since late 1997, and my companion for 184,000 miles on the road. Fun to have a place to put it for years to come – kind of a sentimental thing – artists can be like that sometimes. Thanks again to Kevin & Eve in Minot for providing me with such a faithful ride.

Really been enjoying my time with Aedan. He’s such a little man. Just days prior to my last admission at Regions, Aedan came down with a fever and febrile seizures. Urgent Care advised us to take him to ER. He had come down with what was later diagnosed as Roseola. Unfun that was. For two hours his body would go rigid 2 to 5 seconds at a time, every 2 minutes or so. He cried like crazy, and was so worn out by it.

He’s okay now, and there are no lasting effects. But boy, was that tough. At one time he and I both were lying on a roller bed, being pushed down ER hallways to Radiology. I couldn’t help whispering more than once in his ear, “Daddy knows what it’s like, my boy, and I’m with you. I’m right here with you…”

I think I’ve heard that before.

Things are good here. Aedan surprised me by going down a slide Friday. Apparently the kid’s got no fear. I got a little sun on my scalp yesterday – grilling hamburgers and brats for friends. Jen and I went on a date Thursday – watched horses race at Canterbury. Wrote an article for a youth publication, and got to speak to my youth group Wednesday – for the first time since early June!

I’m thankful for these retreats in the battle. Some of you have asked about my cancer: is the tumor gone? And if so, why are you still on chemo?

To clarify:

I am in remission. The tumor – as large and as “impressive” as it was – was gone from my chest three weeks into my first round of chemo. No cancer was found in my blood, my bone marrow, or my central nervous system. However, the type of cancer with which I was diagnosed – Lymphoblastic Lymphoma – has been found to come back hard and strong. To keep this from happening, the current therapy and approach is to cue up some of the most intense chemo and smash the cancer into the ground. Again, and again, and again.

Doesn’t matter that we can’t see it anymore, we just have to assume it’s there. It’s a sort of “deep cleansing” that requires some pretty potent cleansing agents – drugs that run me through the mire – and it’s my doctors’ intentions to bring me out the other end healthy and cancer-free.

Sure will be nice. See, one thing that’s so hard about all this is that if I weren’t on chemo right now I’d feel the best I’ve felt in years – like today, only everyday. And it’s no longer the cancer that makes me sick, it’s the chemo. But this is how I must live- for the next 6 months or so, really.

It is taking more out of me than I thought it would. The good days are good, but they’re few and far between. And when the good days come, there’s too much I desire to do. I think in my last update I mentioned the frustration of upset plans – over and over again. One person responded maybe my problem was that I was trying too hard to live a normal life. I then did my best to explain that an illness like this stirs up such a hunger for life, that the suppressed lifestyle just won’t do. It doesn’t nurture or feed the hope necessary to endure the nights of number 10 pain, or the resilience to be okay with three out of every four weeks being spent in bed. The most frustrating thing is that there’s so much life to live (the windows are thrown wide open like never before), and I’m so often so incapable of living it.

Anyhow.

You could pray that this next pass would go well – that my digestive system would do what it’s supposed to, that my spinal tap heals up nicely, and that my white blood count doesn’t take the hit it did last month. You could pray for our student ministry at Emmaus as we prepare for a fall launch without me (I begin cranial radiation in September). You could pray for my boy and my bride (and the baby inside her), that they would all stay happy and healthy as we weather this storm together. And you could pray for my heart – my heart so fickle and frail – that this battle would drive my heart deeper and deeper into the secret solace found in the deep love of Christ. I forget about that sometimes.

God help me.

Thanks for your prayers.

So sorry I have emailed back to so few of you – your words are nonetheless manna to me.

In His Care,
Jeremy

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