Monthly Archives: February 2006

2/28/06

If January was the figurative spring in this story, February was the unexpected, unexplainable, freak blizzard that dumped three feet of snow all over, covering green grass, black dirt, and budding flowers. The snow will quickly melt, the garden will recover, and the grass will grow, but that storm sure set things back.

Perhaps this is what I should have expected, what with two prescribed blood tests per week for a month and all. It was nice, and most definitely a gift that I stayed out of the hospital, but three slow-passing weeks of utter fatigue can get to a guy. It wasn’t just the fatigue, either. I watched too much T.V.

Speaking of the Olympics, most of you know this, but there’s been some steroid-use in my life these last few years. I was on prednisone for Crohn’s prior to the cancer, and the treatment for lymphoma included a couple passes of the stuff, too. It’s nothing that would negate my gold medal, but medicine like that shuts down adrenal glands right quick, and they don’t recover in a hurry either. Six to twelve months is what I’ve heard, and that’s without any subsequent steroids, which won’t be my case. Maintenance therapy includes one week of prednisone every month for the next year.

So I guess what I’m saying is, could you pray with me that I’d find strength and stamina (and good spirits) some other way? There’s a whole lotta life to be lived, and there’s a whole bunch of people (myself included) expecting me to start living it really soon. You remember what it’s like to have to go back to school after Christmas Break? Well, this wasn’t exactly Christmas Break, but imagine crawling back into life after nine months of relative simplicity and inactivity. Though suffering took much time and much of me, it was a relatively uncomplicated routine. Life’s normally not much like that.

JELABRI.jpgGood things have happened these last three weeks: Girl Scout cookies are in, and things always look better with a caramel delight in hand (and three in your belly). I’m within two pounds of 130. This is the first time since last May that I’ve been anywhere near my normal weight. Eli’s taken quite a liking to me. He smiles huge when I talk to him. He’s been sleeping through the night, too. Aedan’s in his big boy bed now – he can get out whenever he likes – so we’ve been up earlier and earlier these days. We made it to the Rochester L’Abri Conference a few weeks back. And although I was too exhausted (and Jen too occupied with Eli) to take in every session, the ones we made were good for the insides. Good conversation, the drive was nice, and I sat in a hot tub for the first time in a year.

There’s really so much more to be thankful for, and it does make a difference when I make an effort to “count my blessings.” I really should’ve been doing that more these last few weeks. I’ve more or less been quite a grump, avoiding people for the fear that I might say something I shouldn’t, and biting my tongue just enough to stay out of trouble. Still, home has been the refuge a home is meant to be. Jen’s incredible. Few could live with me when I’m like this, and she does it with such grace. Aedan’s been full of good cheer and humor, beyond a doubt one of my favorite people to hang out with. And Eli’s been just plain pleasant and easy-going, with occasional (and short-lived) bouts of unstoppable wailing. But even his wailing has some pleasing overtones, so long as he’s in a room down the hall with the door closed.

We’ve got plans to drive north to see my mom and dad this weekend. It’ll be the first time there since October. I’ll wrap up this week with one more blood test (shouldn’t be any need for a transfusion… my white counts are low but okay, and you can’t fix those with a transfusion anyway). Next week I meet with my doctor for the first time since I was in the hospital last. I think we may be beginning maintenance therapy then, and I can start seeing a physical therapist and all as well. I’m hoping some exercise will help my mood some, as well as building back some stamina and such.

Anyhow, thank you all who are reading this for hanging with me. And much gratitude to many for the continued support. We’ve been abundantly provided for. My apologies for not posting an update in awhile. You’ve probably noticed we’ve made some significant changes to the website. That’s been partly what has occupied me recently. Take a moment to browse, if you have the time.

Lastly, to bring perspective to my detailed accounts of fatigue, my grumpy disposition, and frivolous mention of cookies and hot tubs, I noticed the front-page headline in the New York Times today was: “Refugee Crisis Grows as Darfur War Crosses a Border.” The plight of so many in Sudan has come to weigh heavily on our hearts since a few months into my battle with cancer. Several refugee families belong to our congregation. Their relatives are still over there. We’ve posted a link on our “Connections” page to World Vision. There’s a convenient way there to provide some practical relief to families in Sudan in the midst of their suffering. Please take a moment to read up on the details of their need and our ability to help, and consider whether this might be an opportunity for you to do so.

Thank you for your concern for me in my suffering. May the help you’ve offered me be as accessible to many.

Gratefully His,
Jeremy

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2/15/06

My counts have been sluggish in their rebound, and it’s been a long time down, but I’ve somehow managed to stay out of the hospital. This last weekend was a bit of a bear. I got a platelet transfusion going into it. I needed a hemoglobin transfusion as well, but needed the one more than the other, so I went until this Tuesday without all those make-me-happy, energy-giving red-blood cells.

I’ve been a bit nauseous on top the fatigue. I hate hanging nausea. I like that it’s not so bad that it makes me feel like throwing up, but it’s a bummer not to feel much like eating. On top of that yucky whatever-it-is that won’t go away.

All the consequential bed rest has been hard on my back. It’s hurting the most consistently it has in months. Persistent spasms and the occasional conversation-stopping pain. I just haven’t had the energy or the strength to keep moving like I must to keep the atrophy from progressing. Soon enough, I hope.

Speaking of atrophy, it’s very much a reality for me in the physical sense – the consistent weight loss and the perpetual bed rest of this last year has created the opportunity for my muscles to shrink up tight. I’ve mentioned many times how it’s going to take some time and some intentional training to reclaim what strength I once had. The same is true with my guitar skills and my voice. I haven’t used either much this last year, and I can feel the weakness – the slow fingers, the limited range.

Oddly, I feel the atrophy is a reality for me in another sense: mentally and socially – the interaction I’ve had with people in the last year has been limited. Very specific circles: doctors, nurses, other patients, family, and close friends. After so much time in solitude and often in a state of suffering, I feel my mental muscles in my interaction with other people have shrunk up a bit, too – if that can happen. I sense the need to be in prayer about this as I resurface in ministry and life in general.

Anyhow, Aedan’s sick now. He gets his coughs so badly. We’re hoping he and I both heal up nicely by the weekend. Jen & I have plans of heading to the Rochester L’Abri Fellowship conference Friday and Saturday. It’s a getaway of sorts for the both of us, and one we’ve enjoyed for years.

The good news, of course, is not to be forgotten. The cancer is gone and I’m done with the hardest chemo. Once the chemo works its way out of my system and I begin to rebound from this crash, I should continue to climb and feel better from day to day. My friend Jessica has been in and out of the hospital a bunch this last week, and for whatever reason, I’ve been spared this time around. She is recovering, and the bug she’s had has been identified and targeted with some pretty effective antibiotics.

It’s just striking, once again, how different I can feel from month to month. And how different the realities can be. January was a good month, and one for which I’m incredibly thankful, but it was as month on steroids, too. I imagine life without chemo and all these other medications, and I eagerly long for the day my emotions and physical wellbeing aren’t being toyed with by concoctions of poison lingering in my body, or a barrage of physical side effects poking at my sanity. It’s also funny how what’s normal can be so hard to remember. I have a hard time imagining what it’ll be like when this is really over – in spite of the fact that it’s rather close. I can’t imagine what life is like for those who suffer for so much longer than this. Normal as it once was must just disappear.

We’ve got a new website in the making. Expect to see it unveiled sometime next week. It’ll be the same content with some few extra bells and whistles. Simpler navigation. Music. We’re pretty excited about it.

Thank you for your prayers. I’m beginning to ramble now (or did I start much sooner?) and I should bed down for the evening. Or at least make sure I have a good snack before I do.

Living in the light at the end of the tunnel,

Still His,

Jeremy

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2/6/06

Blood work revealed really low counts today. I’m well within the parameters ascribed to patients categorized as neutropenic – that fancy word which means little more than “really wimpy immune system.” My counts are in that “don’t sneeze in my zip-code” range. So I won’t be doing much this week. And we hope what activity I do have doesn’t include a trip to ER or time in the hospital. I’ve already got a mild fever (99.5 this afternoon – and headache to boot), I’m still on oral chemo, and I’m not scheduled to get my bone marrow booster shot until Wednesday. So if I haven’t made it plain enough already, we’d appreciate prayers to the effect of sparing me from a full-fledged infection.

The mood I mentioned last week has stuck around. Kind of like wet, gumby clay in the deep grooves of your garden shoes. A muddy mess on the inside. I’m irritated by how easily irritated I’ve found myself these days. It’s a trick of the chemo in part, on top of having counts that are all around low. My energy level takes a hit, and my moods suffer a bit. But regardless of what’s causing it, it is very good to know I belong as much to God on my bad days as I do on my best. It’s the whole Romans 5 thing – while we were sinners, Christ died for us – if he loved me then when I didn’t give a rip, then he loves me still. And it has nothing to do with whether I give a rip or not.


So anyhow. I’d write more if I had the patience to do so. There’s more to say. I’m processing the passing of a season. A really long season. And it is kind of complicated. I’d like to write about it, partly because that’s how I process things, but there are other things to do here. Like eat and sleep. I’ve gained another 10 pounds this last week – a Superbowl party helped to that end – never mind that they were the ten pounds I lost the week before. So I’m still hovering round the low 120’s. But I think there’s some chocolate cake on the counter. Like I said, there are other things to do…

Still His, because of Him,

Jeremy

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2/3/06

One more shot to go. It’s been a fairly easy week. Besides the occasional – maybe frequent – spontaneous afternoon or early evening nap (or both), the days have been pretty predictable. I’ve been a bit sadder than normal – a delayed effect of last week’s chemo – and it’s been a bit harder to motivate to action daily. But there’ve been no seriously crippling side effects. It’s odd to think of how sick these shots made me in July.

My counts were down Monday. That was an expected reaction to the Cytoxin. And while they may have rebounded some this week (I don’t go in for another blood test until next Monday), they’re expected to crash yet once more this month. So they’ve got me scheduled for blood work twice a week through the first week of March.

Still, it feels very much like the end of things – at least the really hard things. The days are soon coming when I must get serious about rebuilding my body. I haven’t weighed myself in awhile, but I’ve seen my tiny frame in the mirror, I’ve felt the quick fatigue in my arms and shoulders, I’ve noticed the pain in my back, and I’ve got a hunch it’ll be some hard work to get strong again, but I’m excited to try.

I was able to give a sort of verbal update in church last Sunday. And our students did an incredible job providing the meat of the morning for our youth Sunday service. It was very good to see. Made me all the more excited to get back in the office.

Please continue to pray that I’d be spared infections. We’ve made some plans for February. And it’s a month I’ve looked forward to for a long time as the beginning of my recovery. While an infection wouldn’t be the worst setback in the world, it could prove still to be a setback.

More in days to come. And better days they’ll be.

Still His,
Jeremy

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