THUR March 23.06

I really thought that by March sometime I’d be in the clear – on the mend, back on my feet again – but instead of a springtimey rebirth, this is beginning to feel more like a mid-life crisis. And I’m not even thirty. I’d explain all of the emotional (vocational, spiritual, psychological, theological) issues if I understood them myself. But I don’t, so I won’t try to, at least not publicly.

Yet on the simpler side of things, an obvious reason for my disappointment might be the three and a half days I recently spent in bed, having fallen victim to a rather brutal cold. A subsequent loss of appetite and consequential weight loss have dealt another blow to my already slow-going recovery. My back’s a source of gut-punching pain as a result, and it seems the pain meds I’ve been taking for months are suddenly prone to make me nauseous.

But it may be the chemo. I took twelve methotrexate pills last Friday that may’ve caused the nausea, but I hope not. I’m scheduled to take those twelve pills every Friday for the next fifteen months. My doctor let me off the hook for this week, in spite of the fact that my white counts were better this week than last. He said it’d be good if I recovered fully from the cold first. Then we’ll try to nail down exactly which drug is making me so sick. The cold is one thing, but appetite-nuking nausea even one day a week for the next year is hard to stand up to.

I did feel better today. Part of the trick is taking my meds at the right time. The other is not eating too much caramel corn. Today I went for a walk, too. A good walk. I tried to nap this afternoon, but couldn’t. Sometimes the chemo makes me exhausted. Sometimes it makes me feel like crawling out of my skin. Sometimes it does both at the same time. I hate that. Every morning at four or five I wake up feeling like that and can’t fall back to sleep. Because of that earlier this week, come midday, I couldn’t stay awake. Now, for some reason, napping doesn’t work, so I took a walk instead. It helped.

Maybe that’s because I walked to the bakery. I didn’t intend to walk to the bakery. It’s just that, normally, when I walk around home, it’s to the bakery. This time, I was just going for a walk, and I ended up at the bakery. (How many sentences do you suppose one can write, in one paragraph, ending with the word bakery?) I walked around the bakery just looking at all the goodies, and noticed a jar of cookie pieces from the cookies that got broken before reaching the display case (ever feel like that? I do.).

They were free. So I reached in and actually found an m&m cookie shard that was nearly the size of a whole cookie. I ate and smiled, thanked the bakery lady (silently, in my heart), and continued on my walk. The sugar from that cookie gave me a nice little lift and I walked, and walked, and walked. When I finally rounded the corner near our house (it was sleeting then), I noticed a beautiful old lady from our church pulling up to our driveway in her white Ford Taurus. She rolled down her window and gave me a book called “Fighting Cancer With Christ.” We talked for a while. Then she drove off and I went back inside. It was a good walk.

I’m still sick, but there’s no question I feel better tonight than I did last night. I’ve received a couple of comments recently from some of you whom I’ve been delighted to find are reading my updates. Thank you. It’s good for me to know you’re out there – not merely as an audience for me to write to, but as friends pressing me forward with prayers to our God, engaging, as comrades, in what is beginning to feel like a battle for my heart. Please, comrades, pray for my heart. And pray for a clear way beyond this battle.

Jen, Aedan, Eli and I thank you for laboring with us in this way.

Still His,
Jeremy

3/20/06

[An addendum to my last update:]

So much for the “no major bugs” claim I made before the weekend. After posting my last update late Friday night, I stayed up with Aedan until two o’clock in the morning, giving him cough syrup and wiping his nose.  By midday Saturday, I was coming down with the same thing. Sunday was a little worse. Then this morning it felt like I disappeared into some sort of sludgy existence. Congested head and chest, sore throat, coughing, and a few hours of nausea at a time. That’s the part I really hate. Naps are a sure cure, at least for a while.

Anyhow, some prayers towards healing would be much appreciated. My immune system got kicked with the chemo I took last Friday, so it’s a bit tougher than normal to fight off this bug. My back isn’t getting any better in bed, and the boys, though well, are requiring more of Jen than she has to give. I’ve heard her cough more than once today, too.

Our house is quiet right now. Family naptime. Gotta go.

A bit foggy,
Jeremy

Saint Pat’s Day ’06

3-17-06 Friday
Tonight Jen & I made up our annual Valentine’s date at Famous Dave’s – this time with two boys in tow (an odd substitution for Saint Patrick’s day… perhaps we’ll wear green on Easter). It was a brief trip to the mall, but fun enough for the day. On the way out we picked up a plane mobile we’d been thinking about getting for the boys. I hung it above Aedan’s bed when we got home, and then laid there with him staring up at the ceiling for a good fifteen minutes. It was good just being amazed with him, wondering together at the random motions of the floating, spinning airplanes suspended four feet over our heads.

Wonder is one thing that can be wounded by an experience like cancer. What little there is left of life’s innocence for a thirty year old in the early days of a new millennium can be easily snuffed out by the duration of a trial like this. How thankful we are for our boys these days. They demand that we stay young, or at least to remember what it was once like to be young.

I had growing pains then. Aedan has them now. I hurt now, too, but they are not pains of growth. My back is bothered by my increased activity. A rise in energy on a day like Wednesday, along with the exposure to my approaching obligations at church caused me to do a little more moving around than I maybe should have. Again on Thursday, and by the evening hours I hurt all over. At night I sleep, and I clench my jaw, too. Headaches and an aching jaw become the norm. Arms and wrists, too. These are pains of decay.

But amidst the decay there is still a recovery. God has given me another chapter, and he is reading the opening lines even now as I write. It is hard to begin living life again – living life outside the experience of cancer, outside the misery of this last year. It is difficult to return to the responsibilities that have seemingly piled up, or hidden in waiting to surprise the citizen become patient become citizen again. Honestly (and ashamedly), if it weren’t for my family here, I sometimes wonder if it wouldn’t have been better if my earthly chapters had come to an end. But by God’s goodness and sovereign grace, (and with a little help from some medications), the story goes on, and I hear His voice as He begins the next chapter, helping me along as He reads. There may be a hesitation or two as He turns the pages, but I do discern there is more to be heard. More to be known. More to be lived.

It seems I’ll be living the first few weeks of this next chapter without a toenail on my right big toe. Adverse affects of the chemo and occasional bouts with malnutrition allowed something really funky to happen to my toenails, and two nights ago, one of them just fell off. I saw a doctor today, and he said the only real concern would be that I’d develop what he called a “second infection” where my toenail had been (because I guess it’d be hard for my body to fight it off). Other than that, it’s no big deal.

That’d largely sum up this first week of my final round – “no big deal.” I was nauseous a bit off and on the first few days of the week, and quite exhausted towards the end of it, but the prednisone didn’t mess me up as much as I was hoping it would (I remember being terribly productive last time I was on such a high dose), and the other chemo pills have hardly phased me. We’ll know more late next week – when I go in for blood tests – how much all this stuff is hitting my immune system. I’ve felt quite fortunate here this winter. Aside from the first few weeks of December, we’ve had no bugs in this house worse than a few bad colds. And crazy enough, while even Eli came down with one for a few days this week, I haven’t had much more than a sniffle – the same was so while my counts were as low as they were in February. I’m grateful for that. Both my boys make better patients than I do. They’re happy sick boys, like I was once.

My parents were down last weekend. I went to the high school hockey tournaments with my dad and brother on Friday afternoon. Our hometown team was playing there again. While I’m not one who’s all too hip on the high school hockey subculture, I don’t mind watching a good game from time to time. Friday’s wasn’t that, really. Good passing in the first period that was fun to watch, after that I spent my time catching up with old friends – like we-haven’t-talked-much-in-twelve-years friends. Hockey’s a big deal for Roseau, so when the team comes down to the Cities for State, a good chunk of the town comes with them. It redeemed the day – seeing those friends – as the team lost badly.

I’ve been able to reconnect with our youth group some lately, as well. It’s been good. Our Wednesday night programming during Lent makes for a shorter evening, which is good – even as it is, I’m worn out well before the evening’s over. Can’t say how grateful I am for the parents and other people who’ve kept some things going (and cleaned some things up) while I’ve been gone. Our senior pastor has accepted a call to another congregation, and will be leaving us next week. As a result, our associate pastor – who’s been overseeing much of the student ministry in my absence – will not be as free in days to come to do what he’s been doing. Pray for patient understanding and smooth transitions all around.

A big part of that would be the quick recovery of strength, stamina, and good spirits. I need prayer for all three. And as I work (and sometimes wait) I trust in hope that God will give these to me. For the sake of His glory here and elsewhere.

Thank you each and all for your continued prayers.

Feebly, but securely, His,
Jeremy

3/9/06

They call it chemo brain. My nurse asked me how I’d been. I told her. She said, “It sounds like chemo brain.” I laughed. I thought it was a joke. Then I noticed she wasn’t laughing, and it occurred to me she might be serious. “Is there such a thing?” I asked. She then explained to me that occasionally patients who’ve received multiple doses of chemotherapy have a hard time in their heads for 2 to 12 months after their last treatment. They have difficulty putting things together – seeing the big picture.

I don’t think I have chemo brain, but I was entertained by the notion that I could have had it. What I am experiencing though, could be likened to the not-so-peaceful transition of a space shuttle in reentry. After days of peacefully orbiting the planet, with minimal body weight and surreal views of celestial things, the plunge back into and through the earth’s atmosphere generates incredible heat on the shuttle’s nose and under belly. Unavoidable friction. And the ship shakes like crazy.

I feel like that. And the atrophied interpersonal social skills I mentioned last week are a reality I may be living with for awhile, although I pray that’s not the case. My atrophied muscles are tight and over-sensitive. They get tired quickly, and will flinch and spasm when poked.

Emotionally, I kinda feel like that, too. Volatile.

Nevertheless, the day dawns, and I can’t stay in bed forever. So I’ve been gradually spending a bit more time at church, slowly trying to catch a view of the big picture – what’s been going on there this last year, where we’re at and where we’re going – and wanting to discern what needs my attention first. It’s paralyzing, almost, but it’s not chemo brain. Things have not fallen apart, by any means. It’s just that, due to my absence, several aspects of the ministry have been in a “holding pattern” waiting for my return. I’m not really back yet, but I’ve set my face in that direction this week.

Jen, Aedan, Eli and I drove north to my parents’ place last weekend. They’d had lots of snow up there all winter, and a near ten inches had fallen there just the night before we arrived. Dad used his tractor to pile huge hills of the fresh stuff all over the yard for climbing, sledding, and digging. Aedan loved it! My mom and dad have gotten into cross-country skiing around the farm a bunch this year and last, so Jen and I borrowed their skis and did a little skiing ourselves. While it was the first significant exercise I’ve had in a month or more, I didn’t do too badly. It only hurt when I’d flinch to catch myself from falling, and I ended up dragging my feet the whole rest of the day (except while I was napping – for several hours later that afternoon).

We had a good time wandering around Roseau while we were there. I’m looking forward to the day I can spend a good couple of hours chatting profusely with a bunch of people there. We had only an hour or so, and much of that was spent at Gene’s wolfing down burgers, pickles, and chips, chatting with relatives in an unexpected but delightful run in.

Jen came with me to see my doctor on Monday. I was expecting to begin my maintenance therapy this week, but he thought it best to give me another week to heal up. I just haven’t had much energy to speak of, I’ve been a bit glum, and I’m still experiencing brief bouts of nausea from time to time, as well. He referred me to a spine specialist I’ll be seeing at the end of March, and advised me to hold off any physical therapy until after that appointment.

So I didn’t begin this week, but we did spend a good deal of time talking through what it might be like once I do. There are two things that concerned us a little. One was that I’ll be taking Methotrexate. Every Friday I’ll take the drug they shot into my spinal taps last fall in pill form. It’s been known to cause some problems – did for me, anyway. The other is the risk of developing osteoporosis as a result of the high dose of prednisone I’ll be on for five days every month. Not that numbers mean much to most of you, but for those familiar with the drug, I’ll be on 100mg five days a month. Throw that on top of a sum total of 12 months of the stuff over the last three years, and I’m a candidate for some bone problems.

But we’re hopeful the whole thing will come and go without complications. Again I share the concerns here, not because I think I’ve got it so bad, but so that you might join us in praying for the best outcome through the whole deal. Everything I write here could be cause for prayer or thanksgiving. It is for us, anyway.

My apologies for any difficulties reading the website. We’re working on it. It’s just that we did most of our designing and proofing on a Macintosh. And the black on brown looks great here – and easy to read! We figured one way to fix the problem was to encourage all of you to trade your PCs in for Macs (your world would be a much better place, we promise). But we understand that’s probably an unrealistic request, so we’re doing what we can. Stay tuned.

Still here and still His,
Jeremy