Monthly Archives: August 2006

I resigned.

I resigned last week. This is the big life decision Jen and I have been mulling over for months.

As of August first, I’ve been unemployed. It went like this: When I was diagnosed last May, Emmaus kept me on staff and on payroll – in spite of the fact I was hardly able to work – with the expectation that after six months or so of intense treatment, I’d be able to return to work full time. Six months came and went, and I still had tubes coming out of my chest. Nine months, and the tubes were gone, but I was still relatively incapacitated. Twelve months, and the ongoing “maintenance therapy” was difficult enough I was shirking key aspects of my treatment just so I could have the physical stamina and mental/emotional fortitude necessary to keep “doing life.”

aderock.jpgWhen my doctor finally convinced me the remainder of my treatment was important enough for me to pick it back up – to stick it out – I knew the decision was more or less made. I’d been waiting for six months for things to change – for a noticeable and sustained increase in energy and ability to focus – and there’d be a week or two at a time when I thought I’d busted out into the open (most often when I was protesting treatment). But each respite proved to be the exception rather than the norm.

In that decisive conversation with Doctor Hurley, the seriousness of the cancer I had (versus the yuck of ongoing treatment) weighed in for the first time since that dark day in May, when I had just been diagnosed, had transferred to Regions, and had yet to learn that my prognosis was not imminent death. I’ve learned in recent days that in spite of the 90% remission rate in response to chemo, the actual 5-year survival rate for T-Cell Lymphoblastic Lymphoma patients is 50%. And that’s a statistic primarily referring to cases in children, who regularly fare better than adults. While these odds honestly don’t diminish our hope for recovery, they do accentuate the need to take treatment – all of it – seriously.

So… making treatment a priority meant the ministry for which I was responsible became not only peripheral, but also daunting. Maintaining a youth ministry for a church the size of Emmaus is exhausting in the best of circumstances, and near impossible under cycles of fatigue and emotional volatility. It became quite clear that it was best both for our church and me for me to step down; to allow someone who could do the job to do it; and to free me up to focus on the remaining healing stages of treatment.

jen&eligitchee.jpgIn spite of this clarity, there were many concerns accompanying my resignation, health insurance among them. Graciously (and that word doesn’t even begin to convey how grateful we are), Emmaus has transferred my health insurance benefits to Jen’s employment, so we’re still covered. This is huge.

Second to this is the need to replace two-thirds of our monthly income. While we are engaging in the process of applying for Social Security Disability benefits, the qualifications are complex, more so than I can go into here. My doctors and our church both are ready to vouch for the validity of my inability to do now what I was doing before, but with the government, it may not be so cut and dry. Virtually every social worker we’ve talked to has been optimistic with us at the onset, hemming and hawing more and more as we go further into the specifics of our situation. The process takes 3 to 6 months to complete, and we really won’t even know for sure whether we’re eligible, or for how much, until that time.

So I guess what I’m saying is, there may be a need for us to look creatively at other means of paying our bills in this season. It simply may not be as easy as turning in a slew of papers to the government and waiting for a paycheck. Please pray for creativity and discernment in this area, for us and for a good handful of people who’ve got a heart to see something work.

jergitchee.jpgI’m excited about and eager to take what opportunities I can to speak and teach and maybe perform to whatever extent stamina (or my heart) allows, here at Emmaus, and elsewhere. But my primary responsibility, at least through May of next year, is to be a cancer patient as well as a rehabilitating husband and dad.

It seems a good part of that rehab is a great deal of introspection, and an ongoing question and answer session with the Spirit of God regarding cancers of the heart. I’m asking Him for an emotional (and physical) wholeness on the other side of this ordeal that’ll make this mess worth it. “After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen, and establish you.” 1 Peter 5:10. I really, really want that. And I pray that in the end I would find that I want that more than a good many other things that I want quite badly, too.

Few are allowed the extended season of introspection I’ve found myself in. And it’s a good thing, I think. It feels a bit precarious. It’s a wonder I don’t numb my spiritual sense silly, to the point of perpetual distraction, with movies, books, and world news. A close friend of ours remarked shortly after my diagnosis that I was somehow “lucky” to have happened upon such respite – months upon months of reading and thinking with so little responsibility otherwise – an unripe comment that I may’ve made (and perhaps once thought myself) before recognizing how susceptible to self-pity the human heart (mine, mostly) can be; and before coming to understand that responsibility is the weight necessary for refining the raw materials of thought life into useful fuel for life.

Like the mountain that sits upon coal, making the diamond; or the weight of gravity in a dance with motion, fighting off atrophy and bedsores, we need pressure and activity as much as we need rest. The balance shifts somewhat in certain seasons, illness being one of them, and it takes some skill and sensitivity then to find the fulcrum. This is the beginning of another season, and I hope to find the fulcrum.

So with that I assume I’ve offered enough to inform whatever prayers you may pray for us here. And we really do covet those prayers. Not just for our physical sustenance, but for our spirits as well. God presses our “reset buttons” in sickness and suffering (Bernie Siegel?), and we’re praying for that full reset, inside and out.

firepit.jpgTo that end, Jen and I will be vacationing for three nights next week at a cabin on Lake of the Woods in Canada, while the boys stay with Grandma and Grandpa on the farm near Roseau. Just last weekend, we were able to spend a night with close friends up on Lake Superior. Aedan can say “Gitchee Gumee” now. And I dug a fire pit in our backyard last week on a good day. We made smores Monday night. Goodness, the goodness of God. So undeserved. May we never cease to recognize all this good stuff comes from Him. So much good stuff…

Still His,
Jeremy, Jen, Aedan, & Eli

eliaugust.jpgPS. We posted a new downloadable message a few weeks back. My buddy Mark pointed out that this website now claims to do something few websites do – uploads messages from the future: 2007! (The real date was in 2006, but I say 2007 adds to the intrigue…) I hope to post a musings blog sometime soon on the book that inspired the title of this message: “Eat This Book” by Eugene Peterson. Friend Eddie Britz calls Eugene “a brain on legs.” I agree. He’s got heart, too.

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Categories: Cancer | 5 Comments

Statistics Parade

field.jpgOnce upon a time, I liked prednisone. Not anymore. When I took it for Crohn’s disease, it was a high dose, and for long periods of time, and I generally felt quite a bit better because it made my gut work the way it was supposed to. Or closer to it. And I got more productive and had more energy and I was happier and all that. And when it came time for me to come off the drug, I was weaned off. That was messy, but at least when I was on it, I was alright. Now I take 2 and ½ times the dose I took for Crohn’s for five days in a row every month, with no wean. This is a crazy thing to do. Sleeping pills become more necessary than toothpaste, moods swing like Joe Mauer at homeplate, and I have to plan meals between bouts of nausea and die-hard cravings. Shortness of breath and a hyper heart rate… the crash is just about as bad. It’s a crazy thing to do, but it’s part of my treatment after all.

I can’t say I like it much. But how much of this is there really to like?

Yesterday was the day after my chemo infusion. The day before I’d been poked six times for blood tests, IV, and a B12 shot. Don’t mind that as much as the bruising later, and the chemo crash, which came yesterday this time around. I sat at the kitchen table all day, perusing through a foot-high stack of papers (lab results, treatment protocols, medication info, therapy help, etc…) that had piled up in a basket in a corner. The papers at the bottom were my discharge papers from my first hospital stay last May.

I tallied some numbers and compiled some interesting stats, for those who know some cancer stuff anyway: Of the roughly 50 chemo drugs approved by the FDA, I took 9 in a total of 70 separate administrations – with 8 to go – by IV, shots, or spinal taps. That’s not including chemo pills – which account for 164 days of oral therapy. In addition to 79 days of high-dose oral steroids, I’ve been on another 30+ prescription meds treating side-effects of the chemo. Figure in supplements and some herbal remedies, and the month of January had me swallowing 80 pills, capsules, and tablets per day. The cherry on top: two weeks of cranial radiation.

sour.jpgForgive me if I parade this like a little boy showing off his scraped knee, but I hadn’t ever really looked at the whole thing before. And I’m fairly glad I didn’t. In retrospect, it’s a big deal. It gives me some grace, some room… some permission: If life isn’t normal just yet, it’s okay. And it’s not, but it is… if you get my drift. Chemo may have made the cancer disappear, but it’s left (and is leaving) its mark on me.

So I haven’t posted much in awhile, not because things have been grand, but because they haven’t. We’ve been chewing on some major life decisions in recent weeks, and it’s taken a lot out of me. Out of us. I’ll be able to divulge more next week, but for now just know we’ve appreciated and appreciate still your prayers on our behalf. Life hasn’t made a whole lotta sense to us for a good long while, and we’re still seeking God to bring some clarity to it all.

In the meantime I got my second haircut this year. People have been saying my hair’s darker. I think I just lost the grays. I’m not gaining weight yet. The tan and the hairdo create the illusion, I think. I weighed more last November than I do now. In any case, I’ve found it’s a whole lot easier to look good than it is to feel good. But it feels good to look good, nonetheless.

tractor.jpgAedan was in ER again a few weeks back. Arresting tummy cramps and spasms. We actually took him to see his pediatrician first, and he sent us to Children’s ER. Did a yucky procedure there with an air pump and a tube up his butt. He didn’t like that much. I wouldn’t either. But he’s been fine since then. And he’s got a new story to tell about “butt noise” that makes us all laugh very much.

So that’s it for now. I’ve much appreciated your consistency in checking the site for updates. I’ve got a little counter that tells me if people are interested, and for all of you who’ve visited the site in the last few weeks, I apologize for not offering more for your muse. My intentions of posting new downloads in July were genuine, but misplaced. I’ve moved them to August now. Maybe next week.

Maybe next week…

Still His,
Jeremy

dock.jpgPS. Huge thanks to Steve & Jackie Thomas for the use of their cabin for my three day get-away last month! Your hospitality was evident even in your absence. It was just what I needed…

Categories: Cancer | Tags: | 10 Comments

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