Rant I (My Aching Back)

I apologize again that it’s been so long.

Believe me when I say it grieves me that I cannot write more these days. There is much to tell. For so many people, blogging serves as some sort of therapy. It is no less for me.

As a dude with a poetic bent, writing is almost as primal as breathing. I do it to live.

Regardless of the medium, the act of writing is always a conversation – with myself, an audience, or God. And as such, I always come away with a deeper understanding of something.

These days of limited strength and mobility – especially in my hands – I miss it like a fish might miss the water.

I can only tap out about a sentence or two at a time. It is painful, and it wears me out.

So I cannot take the time to follow this worthy tangent any further. This makes me sad.

This past month has been a hard one. Released from the predictable routine of weekly chemo crashes and monthly prednisone hits, I anticipated a slow but progressive regaining of strength, and a gradual diminishing of the pain.

It has been anything but this.

I began regular trips to the Y therapy pool. I’m not exactly swimming. What I do is more like floating, but it is helpful nonetheless. I’ve been told this is what I need to do to get my joints and muscles working again.

I stretch and I breathe. I do arm circles. I’ve been doing this for an hour a day, four days a week, for three weeks now. Is that over doing it? Is that not enough? It’s really about all I can do if I still want to walk to my car when I’m done. My back is so stiff and swollen. And hot. And it hurts. Did I mention that it hurts?

If this is the pain I must push through to get stronger, to get better, so be it. Like the two weeks of conditioning practice at the beginning of the football season. Coach says it’s good for me, so I do it. Even though it feels like I’m breaking. If this is that, then I’m glad I’m getting better.

But I remember that kind of pain. And sometimes I’m not so sure this is it. This feels more like injury. Like a sunburn in the sun at eleven in the morning, with six hours of UV to go, and no shade or sunscreen in sight.

I have to ration my steps. Like I only have so many per day. One Saturday night we took the boys to the park. We walked too far one way and I barely made it back. Two days later I thought I was going to pull muscles in both ankles walking to the kitchen for Tylenol.

It is very hard doing life right now. I understand the process of healing from the cure can be a long one. My oncologist and friend said it may be August before I begin to feel significantly better. But both he and another doctor I recently saw shrugged their shoulders at the apparent worsening of my pain and the lessening of my strength.

It’s not just my back. It’s my shoulders, wrists, hip, legs, and neck. I get muscle cramps and spasms when I sit or stand for too long. All this while still on 24/7 narcotic pain meds.

So I began seeing a chiropractic doctor last week. Longtime friend and neighbor Joel Fugleberg is a doctor now. He’s got a clinic in Chanhassen and a home here in Bloomtown. I called him up on a Wednesday in a fog of pain, and asked him if he could take a look at my back.

My first adjustments were, plain and simple, out of this world. Two cracks in my neck released a rush of life down through my chest as though blood started flowing to the rest of my body for the first time in two years. Just incredible. And after a week of this, muscles around my spine have ditched some inflammation. I’ll be seeing him regularly now for the next several months, and look forward to describing all this in greater detail when I can.

I am simultaneously seeing a physical therapist who is not frowning upon my chiropractic affair. Rather, she seeks to works with what Joel is doing to rebuild strength, stamina, and proper function in my back and the rest of my body.

As to what exactly is wrong with my back (and subsequently the rest of my body), there is no one thing that can account for it all. We know I have spinal stenosis and several compressed and mildly herniated discs in my lumbar region. I have an abnormal curvature in my spine. A bone spur and several slightly pinched nerves in my neck. There’s an aberration in my left hip joint and minor osteopenia in my bones. And for years now, I’ve had seasonal inflammation around joints all over my body.

Major muscle groups in my trunk and limbs have either atrophied or stopped firing when or in the way that they’re supposed to.

How this is related to the cancer is loosely assumed. Except that I spent much time in bed these past two years. And when I was up and around, chronic fatigue didn’t allow me the liberty to spend extra calories on correct posture, so little muscles along my spine have been working overtime. My medical records show a cumulative height loss of at least half an inch (some as much as three-quarters) since I was initially admitted in May of 2005.

I am shorter now than I was in seventh grade.

So this is what we have to work with. I’ll say this briefly to end this entry on a positive (albeit staccato) final chord: I feel very cared for by the handful of health professionals that are contributing to my recovery right now (Naomi, Joel, Trisha, Randy, Roy, Lucy, etc…).

I am very appreciative of the fact that each of them recognizes and respects the worth of the other, acknowledging the intricate integration of each of their fields (massage, chiropractic, occupational, oncological, cranial-facial, dental). And that they understand collectively that health is multi-faceted and modern science is young.

It may take work on account of the patient to bring both alternative and widely accepted therapies to the same table, but it also takes willingness on the part of the practitioners to work together. I am in the care of such people.

My hands have done too much. This is the work of several days of writing. Again when I can I will post a lament about chemo brain, fatigue, toxins, finances, or the adverse effect of all these things on family life. In the meantime, please be praying for me and mine.

Still His,
Jeremy

PS. Thanks to those of you who let me know you’re out there. Some surprises, to be sure. I wish I had the time and all else to write a little something to each of you in return. I hope that this will suffice. Oddly, there are still at least another thousand regular readers who remain nameless to me. Perhaps this is something I must get used to. Regardless, warm welcome to all of you who find yourselves here from time to time.

PPS. Keep in prayer my good friends Kanoa Boroos and her husband, Jason. Kanoa was diagnosed last week with a brain tumor that is to be treated with 6 weeks of radiation. Her prognosis is good, but radiation is unpleasant, nonetheless. She currently has 35 staples in her skull and a beautiful head of hair. Not to mention a gracious spirit. God bless you, Kanoa.

With Your Permission

I can assure you that my inactivity on this blog this past month has not been directly related to the end of my treatment. In many ways there has been more to tell about these weeks than there was during a good part of the last two years.

It’s just this:

A) I can’t type for long. I manage a sentence or two every five minutes, and maybe two or three paragraphs per day. Then my wrists pretty much quit.

B) What I’m writing these days reeks to me of self pity. I wonder whether it is anything more than an unecessary and altogether negative rant. I personally don’t mind being really honest about pain, so long as I can see some way that honesty will bring forth some good thing. Right now, being I can’t quite put any path to goodness together in my head (and I feel it even less in my heart), I seriously question the value of my going into great detail about the nature of these present trials.

If I were to describe well how things hurt, and what is so hard, I will have little left to extrapolate the good. But if I give the cliffs notes on the pain and go straight to the good, I will have misrepresented our reality, and what good there is might lose some of its context and therefore some of its weight.

And being I must now so carefully budget my words, and yet don’t have the mind or the physical strength to sit at the keyboard long enough to make timely and appropriate edits, anything I write, if it is to be thorough about anything, is necessarily going to read like an uncensored journal entry. Limited in its perspective, and raw in its content.

If I am to be honest about anything these days, individual entries will leave loose ends untied. They cannot be stand alone representations of the big picture. They will need weeks of context to be understood.

I really do enjoy writing for anyone who will read. And I want badly to offer words that are ultimately beneficial for anyone who happens upon them. But right now I am needing to give my time and strength to things more physical in nature, and will have just enough left to write, but not necessarily to write well.

So I’m not sure exactly why I feel I must ask your permission, but would you give me the grace to give what I’ve got? I can write a little bit every couple of days, but it’ll most likely be the complaint without context; the despair without a devotional at the end; a snapshot of reality without redemption; the tension without the resolve. (Ever read Psalm 88 and said Amen?)
Are you okay with that?

Would you promise to keep in the back of your mind that I do believe God is good and strong and present? That we receive his goodness daily and are thankful for it? That we do really still hope that things will get better? And if they don’t, that Jesus is still our Lord?

Ah, the mind games we play…

Thank you, friends.

Still His,

Jeremy

Lament Intent and Bouncy Balls

How hard it is to look good and not feel good.

How often I’ve wanted my bald head back. Or a band-aid on my forehead. In grade school, a band-aid invoked sympathy. Invited attention. “What happened? Are you okay?” I remember one sunny, wet, spring day in elementary school gym class when we were running around the playground near a chain-link fence. I was goofing off and intentionally stumbled into the fence, getting my foot caught beneath the bottom pokies and the ground.

My foot got snagged and I tripped. It tore a hole in my tenny. We laughed, I got up, and we finished our run. My foot hurt, so I said so. Yet in spite of the hole in my shoe, nobody believed me.

As we lined back up in front of the teacher to do stretches and jumping jacks, I knelt to remove my shoe. I needed to take a peek at my foot. The other kids were laughing. Even the teacher was walking down the row to order me back up. I was trying to explain how my foot hurt; that I was removing my shoe to see what was wrong. Everyone thought I was exaggerating or being a baby.

Until I pulled my shoe off, exposing my bloody sock. Then everyone got really quiet.

Mrs. Glassman removed my bloody sock, and there was my pinky toe, barely hanging on by a messy piece of flesh, the blood oozing from the place where it was supposed to be attached to my foot. Gym class took a break on account of me that day. Mrs. Glassman walked me to the nurse’s office where my aunt Karen came and picked me up, and drove me to the hospital where I got a shot and seven stitches. And the rest of the day off from school.

The trouble with looking good and feeling so rotten, is people expect you to be feeling as well as you look, and if you’re not, you either have to accept that misinterpretation of your well-being and get over it, or justify your inactivity and irritability at every juncture, engaging in explanation time and time again. An exhausting activity, as it tends to be quite self-centered, and disagreeably so. Sometimes it’s just easier to stay in bed. To keep to your cave. It’s almost like a Jekyll and Hyde routine, except the good doctor locks himself up every evening so as to keep the monster from hurting anyone when he’s out.

Unrelenting pain can so easily make a person cantankerous. Pain nags until the person does.

And these days I hurt. I have been in more pain this week than I have been in a good while. Perhaps it is in relation to prednisone-withdrawal, or a consequence of the inactivity of these winter months, and the ensuing atrophy. Perhaps it is another bug.

In any case, the pain often takes my breath away. On my back or up on my feet, I am stiff and rigid, needing to command my exhale. Without intentionally doing so, I nearly cease to breathe – stuck in the breathlessness of a constant ache. The ache in my back, in my neck, in my jaw, and my legs.

My wrists give out with a turn of the steering wheel, or a push of a button on my keyboard, the pouring of milk into my chai. My head is heavy with hurt. My wrists weak with pain. My calves are rigid – hard as bone, my wife says. I am regaining weight, reclaiming muscle mass, but every fiber of those muscles is fired-up to the max. Flexed as flexed can be. My tendons are taut. My softer muscles twitch and threaten to go hard like the rest. My bones creak under the pressure. I walk again like an old man. Bent. Mechanical. Slow. Grimacing.

My gut is slowed by the pain meds necessary to keep me moving – the pain meds that further diminish my energy and capacity for productive thought, making me sleepy, putting me back in bed.

I am in worse shape now than I was at this time one year ago. A glance wouldn’t tell you this. I look better. I have more hair, better color, and a beard. But I hurt more now than I have in many months. I am more fatigued. I’m supposed to be on my way up and out. Then why does this feel more like deeper down and further in?

What is this? Why is this? Aren’t I almost done? Shouldn’t I be getting better now?

It’s been nearly two years. Two years is enough. A month and a half from now I will swallow my last dose of chemo pills. I can understand why some folks opt out of chemotherapy when they relapse. It is hard enough the first time. Even the easy stuff has proven hard for me. At best, imagine being sick with an intense head and chest cold – or the flu – the kind that puts you on your back in bed – for three to four days a week, every week. For two years.

Imagine bouncing back every week. But a little less every week. Eventually you wouldn’t be bouncing back at all. Drop one of those dime-store bouncy balls and watch it until it stops moving and you’ll get what I’m talking about. Eventually, you would stop bouncing altogether, rolling into a hole or a rut in the ground, stopping. You’d just sit there. Unless someone bigger than you came and picked you up.

This is what it has been like for me. It just gets harder and harder to get back up. This past week, rather than feeling a little bit better every day, I felt a little bit worse. Ahhh, and it feels no good to complain. It doesn’t make things better. Especially when there is so much good that goes unheralded (though not unnoticed) in my grief.

Perhaps there are some unaddressed psychological reasons I feel the need to give voice to my pain. There are a few that come to mind. Yet, in spite of this, there is a simpler reason why I write paragraph after paragraph of what Job calls, “speaking from the bitterness of my heart.”

When either of my boys gets hurt, they cry. Even when their hurts are being mended, if the hurt still hurts, they join the primal chorus of lament. Infants, toddlers, and big people, too, have been lending their voices to this work for thousands of years. It is what we do when we hurt. It may grow in complexity as we age – may find more syllables, interesting syntax, less volume, clever wit – but it is still the primal cry of pain. Very often, these posts have been little more than this.

Because of that, it is a wonder to me that so many of you continue logging on to hear me cry. When my boys cry, it raises my blood pressure. I want to do something, and if I can’t, it bothers me. And I realize that this is most often the situation most of you reading this find yourselves in with me. You hear me hurt, but what can you do?

To the many of you who continue praying, thank you, thank you, thank you. To those of you who send kind words, thank you. It is an amazing thing that there are people who weather these sorts of storms alone. I have not had to do that. Because of you. And I cannot say thank you enough.

But the cry is necessary. It is a reflex. It is instinct. It tells us, and the world, that we are still alive. And it screams that something is not right. The Lament is a witness to the brokenness of this world. It demonstrates that something is not how it should be, and we know it. And it communicates our desire for someone somewhere to know this brokenness with us.

And for so many of us, myself first and foremost, if the hurt is not ours, we so rarely let it interrupt or intrude upon our lives. If we know about it, we are near enough.

This is what makes Jesus so amazing. This is what most attracts me to the God of Abraham, Isaac, and Jacob. This is what draws me in and keeps me at His side:

God stepped into the pain.

He entered into it, and entering into it, He began and secured the eventual healing. But He felt it first. He knew it. He knew it like we know it.

He didn’t have to do that. If anybody didn’t deserve it, it was Him.

This is the best story that has ever been told. And I get to be a part of it. It is simply amazing.

Back to the bouncy ball again. When the ball has stopped bouncing, stopped rolling, stopped moving altogether, the ball must become the object. There must be a Subject bigger than the ball that moves the ball. The ball can’t do the moving, it must be moved. The verb must happen to it.

This is something we don’t understand in our strength. This is something that is hard to get: sometimes we just can’t go on. These days have often been to me like traveling through the Dakotas on an almost empty gas tank. The little gas light is on, and I may run out any minute. And there’s no gas station for miles.

But God isn’t fuel. God is framework. God is transportation. I am not the vehicle that needs God like fuel. I am the passenger that needs God like a ride. A real pick-me-upper.

Anybody can bounce… for a while. But to go higher than you were before – that takes becoming the object – that requires a Subject other than the self to do the action. We need to be acted upon, to be propelled.

Lance Armstrong can bounce. Humans bounce. We were made to be bouncy. Some theologians call it common grace. With the right resiliency (and a little God-given propensity for internal exertion, i.e. survival) some can bounce higher than the height from which they’ve fallen.

But we are all still bouncing balls and not birds. To truly soar, we need to be transformed. To become what we are not. And to be transformed, we need to be acted upon. The verb needs to happen to us. We need another outside ourselves to initiate and complete the action of transforming.

This is the promise of Christ’s resurrection. Christ purchased redemption. He promised resurrection. Remission isn’t resurrection. Remission is redemption. Lazarus was dead and then wasn’t dead, but even his resurrection at that time was redemption. Or remission, as it were. His body died again.

But final resurrection is promised. It will one day be his, like it will one day be mine. Brand new bodies. Not the old body brought to life again, but the old body changed. A new body. Ahhh, how we were made to want this. The Longing (like the Lament) testifies to the brokenness of this world, to God’s intent to make things right, to His commitment to make things right, and to the fullness of things made right in Christ. He did it. It’s done. And it will be mine.

That is one reason why today, I celebrate sincerely.

He is risen, indeed.

And though I fall down, I’m gonna get up.

Can I get an Amen?

His because of Him,

Jeremy

PS. Click on any of the bouncy ball images in this post for a link to an incredible video.

PPS. Jen and boys are doing well. Eli is emerging a musician. He sings intervals better than I do. And Ade is an athletic little artist. He throws strikes consistently (across the living room, at least), and loves to paint. And Jen, well, she’s Jen. And I love her. Thanks to Ben, Dre, and Tom for seeing me through a difficult weekend without them.