Posts Tagged With: exhaustion

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.

shades.jpgRegardless 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.

cennlake2.jpgI 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.

tinfish.jpgMy 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,

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.

Categories: Cancer | Tags: , , , , , , , , , , , , , | 11 Comments

Prednisone Pillow Tatoos

This morning I woke up with a pillow tattoo across the right side of my face. Folds and wrinkles of fabric were imprinted on my flesh in dark shades of red. Apparently twelve hours of REM will allow this to happen.

elidadhat.jpgI’ve occasionally given a good deal of thought to this phenomenon. It’s a wonder to me that we go to bed at night looking one way and wake up in the morning looking another. What happens to our hair and our face while we sleep is almost inexplicable. Exactly how does it happen and who does it? A pillow power trip, maybe?

I’ve been giving my pillow ample opportunity to do its thing this week. Sunday morning I woke up to post-prednisone fatigue for what I hope will be the last time in my life. As such, I want to do my best to write about the experience before I forget what it’s like. It’s really something else. The word “tired” doesn’t cut it. Even adding adjectives and hyperbole like “deathly” seems tame. I remember thinking once that even while death might’ve been a release from the fatigue I didn’t have the energy to die.

It hurt to roll my eyes (like I’m rolling them now). Glancing from left to right was dizzying, as my vision seemed slow to follow. Another way to say it is that it felt like heavy weights were hung on the optic nerves inside my head, like wet blankets on a clothesline.

Conversation was exhausting. In part because of the calories spent pushing wind through my vocal chords and putting shape to my words. But equally so was just thinking of the words to say. And this wasn’t rigorous mental activity. This was telling Aedan where to find his blanky.

I remember noticing I had to think to breathe. It wasn’t that I’d stop breathing if I didn’t, but I wouldn’t breathe well. But then I’d start thinking about it, and my lungs would begin to burn with that Icy Hot sensation, as if they didn’t like the extra attention, and were willing to go on strike to make it go away.

Several times when I turned my head in bed I felt as though I’d just finished running the bases for an infield homerun. And I’m a single sprinter if anything at all. You know that rubbery exhaustion you feel in your legs after a good run or a good swim (the “I can’t take another step” kind)? I felt that way all over all day long for two days in a row.

adegramahat.jpgAt some point in the day on Monday, I stood at the bathroom sink willing myself to put my head under the faucet to wash my hair. I had to mentally convince myself that I would feel better if I did so, and that I would find the strength to pull my head out of the sink once I was done. I nearly cried for the absence of any sustained energy. I did my daily bathroom routine in shifts, evenly spaced throughout the passing of two days.

I’m realizing now why I’ve so rarely rehashed these weekends once they’ve passed – not so much because I don’t want to remember them, but because I can’t. It’s such a haze.

Sunday afternoon I napped. That’s what I did all afternoon. Naps are most often a relief from the fatigue. I dream when I sleep, and have had a very colorful dreamlife ever since I was a kid. They’re like little adventures every night. Another life, almost. Where I can run and fly and play guitar or baseball.

But Sunday afternoon, I was napping in my dreams. In my dreams I was fatigued and trying to sleep, but couldn’t. And so when I woke up, after four hours of sleeping, I was still tired.

Now I don’t know exactly what’s going on chemically. I’ve read just enough to be dangerous. But having experienced firsthand for four years the letdown of a prednisone-induced adrenal crash, I can tell you what it feels like. And it feels like I’m entirely out of fuel.

jjfence.jpgYou know the saying: “You don’t know what you’ve got till it’s gone.” Well, this is that. I wonder if we don’t always have a little adrenaline burning subtly beneath all the activity, like a pilot flame on a furnace that keeps the house warm, or the idle of an engine that makes it ready at a moments notice. That spark has gone out in this kind of fatigue. There is no reserve. No back-up generator.

What I’m guessing (and what I’ve been led to believe, though perhaps wrongly) is that prednisone serves as a stimulant like the hormone normally released by our adrenal gland. A hormone that is always present at some level, though abundantly so in extreme situations. The presence of prednisone for long periods (like treatment for Crohn’s disease) or high dosages (like treatment for this cancer) fools the adrenal gland into thinking its work is unnecessary. It shuts down. And prednisone becomes the fuel.

Then when there’s no more prednisone, there’s no more fuel. And the adrenal gland, though quick to move when up and running, is an extremely sluggish riser. It is slow to wake. It sputters and stumbles into action. And while it’s coming to, you’re not just out of fuel – you’re pushing a dead car up the road in traffic and a snowstorm. Not to mention that you can’t shift the transmission out of park.

And here’s another funny thing: if this is true – if this is what is happening – then drinking a caffeinated beverage isn’t going to do you any good. Caffeine does what it does by affecting your body’s use of adrenaline. So if there’s no adrenaline, there’s no way for caffeine to pull the strings.

Enough said.

There are at least two reasons I’ve gone to such great lengths to describe what this particular crash weekend was like. One is to point out that this has been the predictable cycle of experience every couple of weeks for the past fifteen months. This weekend was no exception. It was the norm. Though each trip through has been a bit harder than the one before, the type of experience has been the same.

kissincharlie.jpgBut that is not the amazing thing. The amazing thing is I’m still here. Suffering is not extraordinary. Sustenance is. Salvation is. An experience like that of these last years could wreck a life. It could wreck a marriage. It could ruin relationships. It could crush a person. But my family is still here, we’re still happy, and I’m still sane.

This is no accident. This is not mere fortune. This is more than having a good attitude.

It’s miraculous.

This could not be but for the collective willingness of a whole community of people contributing in one way or another to our wellness. I had to quit my job. I had to ask for help. I had to lean into the provision of many in a hundred different ways, and I found strong arms to fall into. Strong backs to bear the burden. Deep pockets to keep us floating. Tender hearts to weep with us. Bold spirits who hoped for us.

Because sometimes you can’t make it on your own.

The absence of shrapnel does not mean there was no bomb. Just because there’s no mess doesn’t mean there wasn’t an explosion. Rather, the destruction was resisted. The force of the blast absorbed, transformed, redeemed. C.S. Lewis suggests that those who know the persuasive and destructive force of evil best are those who resist it. (So Christ gets it best).

When enough of us take the hit together (talking about suffering, not Woodstock), when we share the pain, the force of destruction is diffused. We need each other. We need families, spouses, in-laws, churches, schools, clubs, governments, professions, friends; we need community.

And we need God.


I’ve been unable to post this update now for three days running. No technical problems. Just this. It’s beginning to feel (in my mind, at least) a lot like writing a book. As such, the ideas I have for what I’m going to say and how I’m going to say it have been too abundant for my pained wrists and my tired eyes to keep up with. I write for an hour and then spend the rest of the day nursing weak and achy hands. I realized this morning that by the time I am able to finish saying what I’m saying it’ll be old news. Which is fine for some things, but not an “update” of recent events.

So I’ll just throw out a few more glimpses of current circumstance and have to save the rest for when I can do the writing.

dadnade.jpgIt’s been a difficult week. Not unbearable. Not spectacular. Just a slow, predictable, and achy grind. Resurfacing after each successive prednisone dive has been more and more taxing. I’ve begun to realize why the treatment lasts for a full 24 months: because month 25 would probably be one too many. Two years of this particular treatment is enough. I’m ready to be done.

Last night (5/4) I took my third-to-last dose of chemo pills. Two more weeks. I take my last dose on Friday 5/18 – exactly two years to the date from my first bag of chemo. Doctor Hurley (and all the literature I’ve read and the survivors and nurses I’ve talked with) said to expect a slow rebound. And we do have conservative expectations. Nevertheless, I am eager to begin feeling better. Excited to be getting back up for something other than the next blow.

My wrists (and sometimes my back/legs) have hurt more lately than they have in many years. I am thankful for massages and pain medicine these days, for without it I really don’t think I’d be moving much (or writing any). The few times I’ve forgotten or missed a dose, the pain has arrested all activity, and left me catching my breath in bed.

Springtime in the Midwest is beautiful, though. And the beauty has put a burr in my saddle. We’ve had a good deal of help these past few days doing the necessary spring-cleaning. It’s incredible to have people so willing to help – both those who respond without questions to specific requests and those who show up unbidden. Simply awe-inspiring, holy moments.

(When Jesus tells the story of the Good Samaritan, he says the Samaritan anointed the hurting man’s wounds with oil and wine. While these were probably common ointments for wounds in the day, I think the beautiful thing in this story is the statement he may be making about worship. The priest and the Levite both took part in worship rituals at the temple in Jerusalem. Two essential tools of the trade were oil and wine. They used these to signify holy moments. I think Jesus was saying the Samaritan was worshipping God in his service to this man who needed his help. Jesus was saying it was a holy moment.)

Most of our spring projects, however, will have to wait.

I’ve been beginning to process the full scope of experiences from these past two years. I pray I can do so. Writing has been an exciting and life-giving work for me lately. Lord willing, a book of some sort is just around the bend. Please pray for me in this. It is not so difficult to think of what to say, but what not to say. And then to have the body to do the work of writing it out. A sedentary lifestyle is more difficult than one might imagine. Especially when physical therapy is a must for a return to health.

Some of you have recommended using some sort of voice transcoder. Others have even volunteered to do the typing. Thank you for this. But I am not so gifted a thinker to speak and create on the fly – at least in making a book. I’ve heard that G.K. Chesterton often did this. But I need to interact with the page to do what I do. Pray I would be able to do what I need to do for my body to be strong, and that God’s gift of healing would be at work in my back and hands.

jencity.jpgOkay, so this is about as much as I can do for now. Four days in and this update is finally ready to post. Just a few more things: I’ve been invited to speak on two separate occasions in my hometown this summer. High School Baccalaureate and Church Night at the county fair. Fun stuff. Please pray for me as I prepare.

And I love my wife. What’s that got to do with anything?

Just about everything.

Thanks each and all again for reading.


Still His,


Categories: Cancer | Tags: , , , , , , , , , , , , , , | 4 Comments

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