Posts Tagged With: Prednisone

Still here, and sick again.

Greetings friends. Forgive the prolonged silence here. And the unecessarily shocking headline. The illness at present is not nearly as serious as cancer or crohns, but in the present, it is no less taxing. And so I write now merely to ask for prayer, for we are feeling the absence of intercession these days (if only in the details).

There is no doubt much good to say, much news to tell, but I haven’t the energy now nor the clarity of thought to tell it. I did a few weeks ago, during which I spent parts of ten days piecing together a two page update creatively detailing the major stories of these past three months. But then, before I got a chance to post it, I lost it. Stuck in dismay over a good work gone, I haven’t been able to try my hands at it again, until today. Today is just too much.

But first, the few paragraphs I had backed up before my computer crashed…

My heart aches with gratitude. A weight of abundant blessing hangs heavy on my heart. Like an anchor, not a plow. Not a burden, but a mooring, a point of reference. A launch pad, perhaps. Or the bottom end of a kite string, firmly held, so that instead of being blown away, this kite rises higher with each blast of wind.

God, thank you for gratitude. Thank you for nurturing gratitude, for feeding it, for creating the context for it to flourish naturally. Almost effortlessly. How refreshing. How contrary to the gratitude hard won by faith these past years – that posture of praise that is one part reaction and three parts will. How grateful I am for this gratitude you’ve put so deep within me, anchoring the lighter, more visible, wind-catching aspects of my being.

Thank you for the steady hand of gratitude holding the other end of this kite’s string. And because of it, I am not blowing away, but rising again. In this wind.

Christmas this year was pleasant, rich, peaceful… almost enchanting.

It didn’t have to be. Sick kids. Sick us. Has hardly been a day since early December that one of us hasn’t been sick. Head colds. Respiratory infections. Stomach flu. Ear infections. I took my annual trip to ER in an ambulance a few days after Christmas. And spent my first night up on the eighth floor at Regions since January 2006.

And there’s the looming financial uncertainty. In the nation’s economy and our family’s bank account. Shrinking reservoir. The calendar year for our health insurance turned over early December, so we started over on our out of pocket expenses again. One trip to the pharmacy for five medicines cost $600, another $500. Good news is, add that to the trip to ER, and we’ve probably met our deductible for the year.

So Christmas didn’t have to be good, but it was. Like the feasts and festivals the LORD gave the ancient Hebrews. Like the year of Jubilee when debts were cancelled and slaves released. We gave been cared for this Christmas in ways practical and abundant. We were able to buy gifts without impeding budget boundaries. We were able to give generously. I can’t tell you what good that has done for our hearts – for my heart specifically – to be able to turn from a primary function of consumption to contribution. To be able to give.


So that’s the bigger story context for this lament and plea for prayer.

We truly had a wonderful December. Three solid months, actually, of me on steroids. And it was good. Productive. Hopeful. Manageable. It really felt like the beginning of something new, something kind of like me (and Jen and me) before all of this broken body stuff. I was doing stuff, and dreaming, and capably caring for my family. But, little by little, since midnight on the 26th of December (when Jen first got sick, and I dropped into the final descent of my taper off prednisone), the colors began to fade.

The pain has come back. I’m weaker in my hands and wrists than I remember being before. I’m clumsy. I drop stuff. Keyboards hurt. Computer and piano. I’m discouraged, really. A guy has a hard time hoping when he can’t do stuff.

Then I got sick. Then Ade, and Eli, and then Jen again. Right now, all four of us are sick with something, each of us racked with a different variation of a malicious bug. And then really, who takes care of whom? We’re managing, with family nearby (Jen’s dad, Bruce, has been here four days this week), but not well. And the frustration is going deep, as well as the subversion of hope. When will things change? And how?

May, maybe. When baby Erickson number three makes his home here. We learned a month back that the bun in the oven is a boy. Good news in many ways, as we were told we’d unlikely be able to have kids again. So that’s great! But how are we going to do this? Really. I’ve got more questions now than answers. More problems than solutions. And it is such a sharp contrast to the inertia of hope I felt so deeply just weeks ago.

So we’ve got troubles on the outside (being sick, mostly, and in pain), and troubles on the inside (discouraged, depressed maybe?). Those of you who are still checking this blog regularly are probably those of you who pray. I trust you’ll know what to do with this. I’d write more of gratitude and momentum and hope and faith if I could (and there would be much to write), but I can’t. My wrists hurt, and I’m tired. And I think number two just woke from his third nap today.

Unpoetically grateful and hopeful (while shamefully despairing),

I am still…

His,

Jeremy

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Categories: Cancer | Tags: , , , , , , , , , , | 12 Comments

Prednisone, Again.

One beneficial side effect is that my wrists feel a wee bit better, and I may be able to tap out a few words this month. I’m on prednisone again. How about that.

11eli3.jpgPast few months have been busy for me in the clinical realm. Never fun. Interesting sometimes, but never fun. Rheumatology. Infectious Diseases. Physical Therapy. Chiropractic adjustments. Backaches. Cavities, toothaches, and root canals. An MRI. An EMG. X-Rays. Lab work. Prenatal, and Craniofacial Therapy.

This week I reconnected with my old GI doc: I’m having a Crohn’s flareup again. First time it’s been this bad since I was diagnosed four years ago. I’ve lost near ten pounds in two weeks. Haven’t been feeling so good. Until today, that is. Until I swallowed another 40 mg of the Zone. Never thought I’d do that again. At least now I don’t fall asleep watching the evening news – not like it’s uninteresting.

I was just kidding about the prenatal thing. Guys don’t do prenatal. You knew that.

11ade1.jpgThis afternoon I have my first CT scan since credits rolled on the chemo. I’ll know the results in about a week. It’s a big one. It’s been six months. I’m not nervous really; I just don’t like drinking Radiology’s version of a smoothie. Especially while my belly’s so stinking artsy. Sensitive to the core. I’d prefer Jamba. Or an Orange Julius. And four cups? Even when it’s tasty I can’t drink that much. Do I really look like I could pack that away?

I ended up backing out of a Writer’s Conference this last weekend. I was looking forward to meeting and hearing one of my heroes. And learning a thing or two about writing (and perhaps publishing something other than blogs). Walt Wangerin was at Luther College. I was supposed to be, too. But fatigue and frequent trips to the jiffy rendered me a no-show. Just couldn’t do it. Bummer.

Two weeks hence, I plan to be speaking at a youth retreat in Nodak. Then flying to Chicago for a video shoot with friends at Awana (I get to wear makeup). This would normally be far too ambitious an itinerary, especially with insides neglecting to absorb any good thing, but with corticosteroids jacking my adrenals, it’s actually starting to look like good timing. Funny.

11jna1.jpgSpeaking of timing, Jen hasn’t been feeling so well lately, either. She’s got a nasty cold. And some other stuff. Tired, and a cough that just won’t go away. Now I’ve got it, too. Goes with out saying that when mom’s well, all’s well. And when she’s not well? Well…

Things are at a pretty serious standstill here regarding my employment and things of that sort. I’m still on Social Security Disability – which has been a Godsend for a season (still is, really). When it kicked into effect a year ago they wrote a check that was retroactive back to five months after I got cancer. So for twelve months it was like we were getting twice what we were actually given. Monthly, that is. Now all our reserve is dried up. That retroactive lump sum routinely covered our monthly shortfalls. We had reserve. Now all we have is shortfalls.

I get a check from Social Security. Jen gets a check from Emmaus. And our kids get a little bit from the big G as well (perhaps another kid would actually be an asset…) All told, we’re still leaning hard into whatever help we receive from those who can give it. Life’s expensive. Especially with kids, no job, and a hobby like mine.

11eli2.jpgAnd these days, my medical hobby’s looked more like a vocation than an in-your-spare-time thing. And for as much as there is to be made in the medical profession, the pay’s not so great from this end.

So plainly said (gulp), we could use your help.

I’ve done this so many times I think I could accurately display some reflective psychoanalysis here: It is hard for anyone, especially a young husband/father of 2 or 3, to ask other people for his daily bread. Much easier to ask God who says he’ll give before you ask. Then go work your butt off to acquiesce.

It’s much easier to ask if a) you are really, really sick and incapacitated; or b) able to contribute something to society or the church as a whole, even if not directly related to the sustenance for which you are asking, in order to more or less earn your keep.

11eli4.jpgWell, trouble is, right now I’m only sorta sick (as compared to CALGB 8811 chemotherapy: a.k.a. the last two years) and relatively unable to do the things which I feel amount to my potential contributions to the body (write, perform, travel and speak, etc…).

Point is, asking’s pretty hard. Feels a bit like begging. Feels a bit like raw humility (not the admirable kind). But both desperation and prednisone has put me out here. So here I am. Out here.

11eli1.jpgI learned today that I need another root canal. Pronto. That’ll be before our insurance calendar year turns over, and will cost approximately a thousand bucks. A legitimate billing black hole with our car insurance people revealed this month that we owe $1800 in back payments. Treatment for TMJ (my painful jaw that limits singing and other things, like chewing food – my molars don’t come together on either side) yields a hefty debt that insurance barely touches. We’ve been working on that for a year, and still owe $1500.

One of our cars is so goofed up my dad’s got it checked into a garage up in Roseau with high hopes of nursing it back to health. Wrenches at Saturn down here in the Twin Cities were scratching their heads (and charging for that) at the myriad of things gone wrong.

So all of this has kind of come now. Right before the holidays. Right before gift shopping and birthdays and Christmas concerts. Right before some gradual, hopeful, and rather monumental changes in our lives, and it’s a bit difficult. This isn’t my sad song. These are just the details. Or some of the details. There’s still more to tell, and much of it is good (I hope to write the proverbial Christmas Letter this month – big news and all), but it is befuddling. For now, I think I’ve said enough.

11jnj11.jpgMy apologies for not sharing brighter news. My hope is my meager attempts at humor aptly allude to our joy and held out hope that things will get better, someday. Or at the least, that we, and our faith, will be made strong.

If for nothing else, thank you for being aware of our story. My hunch is there is even more for which I could say thanks, like your prayers. But I’ll save that for another post, when I have the stamina and the words to do it well.

Blessings, friends.

Still His,
Jeremy

11ade2.jpgP.S. If you are one who is able and would like to put bread in our basket, here are three avenues. The first is simple enough: you could mail it to us at 8121 Fourth Ave. S. Bloomington, MN 55420. The second is like it: there’s a benefit fund in my name at the Citizen’s State Bank in Roseau, PO Box 160, Roseau, MN 56751. The third is a benefit fund set up at Emmaus that actually yields receipts for tax-deductible donations: In this case only make checks payable to The Jeremy Erickson Family Benefit Fund, and send to the same c/o Emmaus Lutheran Church, 8443 Second Ave. S. Bloomington, MN 55420. This last one is a channel specifically for paying medical related bills and monthly living expenses. The first two give us a little more leeway, like birthday gifts and nights out. In either case, thank you, thank you, thank you, thank you…

Categories: Cancer | Tags: , , , , , , , , | 5 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.

TWO DAYS LATER

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.

Blessings.

Still His,

Jeremy

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

On Runways And Going Crazy

A man’s spirit sustains him in sickness,
But a crushed spirit who can bear?

Football

football.jpgImagine me standing side by side with Peyton Manning. He’s in uniform, holding one of those huge official NFL pigskins. I’m in sweatpants and slippers. Peyton plays football. He says so. And I say, “I play football, too.” As proof, I hold up my 70’s-vintage, hand-held, push-button Classic Football by Mattel with the green screen and the little red light bulbs.

I play football, too.

By comparison, it’s not really football. I know there’s a Madden game out there with a rumble feature and pretty realistic graphics and all, but I get dizzy watching the screen, and too much telly hangs heavy on my heart.

Once in real life I tackled Benjy Deubner on a full sprint. Wes Patterson took me down during a game of two-hand touch at Camp Kitchi-Khanis, and both Wes and Ben are big boys. So I know what real football is, and I know this game isn’t it. But it’s as close as I can get right now.

Runways

My friend Dave Roise and I have something in common (besides music, faith, frame, and our aging taste-buds): we both love flying. Dave actually had the guts (and the time – before eight kids) to get his pilot’s license. By the time I came of age, I’d read too many stories of young aspiring musicians dying in plane wrecks to spend time learning how to read the gauges.

pipercub.jpgBut when I was a kid, my uncle Mike would take me up in his yellow Piper Cub. Mike would let me fly. My dad’s duck-hunting buddy, Bob, would land his green Cub on the road in front of our house, taxi down our driveway, and ask mom if he could take me for a ride.

How cool is that?

Once Bob offered to take one of my dad’s aunts up. She was a big lady. A Piper Cub is a fairly light, front/back, two-seater (technical jargon) with sticks and pedals coming up out of the floor for control (more technical jargon). There’s one stick in front of both seats. When one is moved, the other moves with it.

So you’ve probably seen enough movies and heard “Pull back!!! Pull back!!!” enough to know one pulls the stick back to go up. And you probably know where this is going. (I find it intriguing, but irritating when tangents hang unresolved – a useful writing tool when making a point, which this story may not – so here’s what happened…)

elisapple.jpgBob taxied onto the road and picked up speed for a quarter-mile or more – whatever it was, it was significantly more than it’d usually require – and he pulled back on the stick to take off. The stick only went so far. And instead of the sudden silence of the landing gears leaving gravel, Bob heard the sound of my great aunt grunting oddly behind him.

Fortunately for them in this case the runway went on for quite a distance (as roads typically do). But most runways aren’t like that. Runways begin. And runways end. If, when accelerating down a runway, you aren’t off the ground before a certain point, you must throttle down your engine, stop, turn around, and in some cases, taxi all the way back to the other end of the runway (if you’ve flown you know how painfully long this takes) to try again.

Empathy

wristband.jpgOne of the more difficult aspects of having a chronic illness (or cancer, or pain, or loss, or a handicap, or a hardship of any sort) is this nagging sense that no one really understands. This is both a reality and an exaggeration. It is true that my suffering is my suffering and not someone else’s. My pain really can only be known by me (with God being the exception – He knows).

But it’s also true that all of us hurt in some way at some time, and our hurts help each of us understand the suffering of others, which, by the way, may be incomprehensibly more horrid than any thing we may endure. So there are people who really do understand. People who get our pain better, perhaps, than we do.

The real wicked thing is how subtly a genuine need and our desire to communicate that need becomes an incessant demand to be understood. I’ve experienced this in others and in myself firsthand. It’s childish and completely uninviting. I can smell it in conversations and the words of others like a dirty diaper. Perhaps because I’m sitting in it so often myself.

terrace.jpgNonetheless it is necessary to let those who love us know how and when we hurt and how they can help – THOSE WHO LOVE US. What they do with the knowledge of our need is up to them. And how we respond to how they respond is up to us. We as much have the opportunity to love in the absence of love as they have in the presence of need.

So I have a hard time sometimes coming to the keyboard and tapping out the details of my pain (or even my descriptions of the good times) for the general public (versus my closest friends and family), for fear that I’m playing to the adolescent mantra of ME-ME-ME, whether by my whine or by my whinny. But I’ve come to recognize recently why it is that I must do this.

One reason is the obvious and often stated desire to inform the prayers of those of you who do pray for me. I’m not hesitant to say that I need to be prayed for. And I’m rarely hesitant to say how. At least for most things.

But the other that has come to mind is the fact that not everyone can put his or her hurts to words. I can. And perhaps my words will give voice to the needs that others have but cannot express. And perhaps this voice will speak into each of us a deeper longing to love well. And then perhaps we will do it.

snownight.jpgSo for those of you who read my last post and wondered what in the world was going on, I hope this clarifies. I’m writing to nurture empathy. Not for me, but in us, for others. If my method was too abrupt an aversion from my normal writing, I apologize. Please be certain there is no numbness to the kindness I’ve been shown in so many ways.

God has allowed me to experience in these passing moments what other people live with daily. I write what it was like so that those who can’t put their pain to words can be heard and perhaps understood. Then maybe the rest of us will be able to love them better, and maybe their pain will subside just a little.

Prednisone

Prednisone may cause euphoria, insomnia, mood changes, personality changes, psychotic behavior, or severe depression. It may worsen any existing emotional instability.

How many sci-fi plots have revolved around a weapon of some sort that fries a person slowly from the inside out? The kind of thing where there’s no evidence the person is being killed until he’s dead – except this tortured look of panic on his face right before he goes…

Mental maladies are like this. And those that are brought on by medications that doctors say are necessary to cure other illnesses are particularly diabolic. It is, as they say, the cost of the cure.

meds.jpgI have swallowed more narcotic and prednisone pills in my life than I would have liked to. But the evidence so far says I’m probably better off for it, considering the damage an unresolved Crohn’s flare-up can wreak on a guy’s gut, the immobility that is brought on by untamed pain, or the typical outcome of an unaddressed cancer of the terminal sort.

Nonetheless, the residual and cumulative effects of these drugs and repeated withdrawal episodes have nurtured in me a deep hatred for The Zone and OxyCrawl. I am thankful that these drugs do what they do to keep me alive and “well,” but every trip through is harder than the last.

This last weekend was one such journey.

I’ve explained this before, but the treatment protocol I’m on includes five days of high dosage prednisone every four weeks. This is a drug that one would typically be weaned from, but not with this protocol. It’s what I think is called “pulse” or “shock” therapy. I’ve done it twelve times now, and am scheduled to do three more. The 2 to 3 days after the 5 are the toughest ones for me. Other days I may be very tired, but these are days of fatigue plus – extreme fatigue, plus mental/emotional fragility of the obscene sort.

hobo.jpgOne might ask why this has not been so much of a problem before, and I wonder the same myself. While I have noticed the emotional upset in months past, these last few have become more and more difficult.

The only thing I can say is that I don’t think we fully understand the effects of these drugs on our bodies – the chemo, narcotics, steroids, and anti-depressants. I’ve noticed, particularly with the chemo, the same dose of any particular drug can trigger two different reactions at different times. It’s as though the last dose somehow changed my body, and this dose is dropped into a new pool (considering the DNA-bashing qualities of chemo, this may actually be the case).

Losing It

pockets.jpgWhatever it may be, there were a few hours Saturday and Sunday that were just plain scary. I was home alone with Aedan both times – which for the most part was a good thing, as when he’s happy he helps keep me sane and anchored. He was sick and had just woken from a fever and Tylenol-induced nap. He asked me for a glass of water, and when I tried to rise to get one for him, I had a debilitating anxiety-attack. My vision went fuzzy, my ears rang, my limbs tingled, my chest went numb, and I felt like I couldn’t breathe.

I couldn’t get out of bed.

By God’s grace I was able to keep this from Aedan’s knowledge. And after awhile, it passed. But I had to call Jen and ask her to leave her sister’s baby shower to come home. Later that evening, I was finer than a happy summer day.

Sunday, a similar thing happened, only the physical symptoms weren’t as intense. But both times, what was going on in my mind was the most terrifying thing. I was hearing overlapping lies and accusations said about me, and by me about others that I just couldn’t make go away. It was like I was in a car going too fast down a loose gravel road, with rocky ravines on both sides, dangerously close to careening out of control. As I paced the living room floor Sunday afternoon I prayed. I prayed simply but sincerely. And it took every ounce of my being – every calorie spent – to hold it all together. It felt like I was losing my mind – like I was just a breath away from going insane. This is a scary thing.

bababuddy.jpgI was rescued by a few well-timed phone calls, a handful of well-placed prayers, and a couple chuckles with my dad. Again, come Sunday evening, it was as though the whole thing had been just a bad dream.

And while there are still daily aches and the hanging propensity for sadness, it is bearable and not unlike being human – something other than the medicine-induced mess I stumbled through last weekend. It seems at least for this month, the worst is behind me.

The Little Beast

But the thing I want to be really clear about is how covert mental-emotional volatility can be. It is a sneaky machine. And it is especially important, at a time in which it and the broken lives left in its wake are so common, to understand how hard it is to detect. And how easy it is to dismiss.

While my mind was near the edge, my body was well-dressed and groomed. While my thoughts were falling apart, my words held together in conversation. I could be polite. I could be coherent. Yet with my closest friend, I had a hard time being frank about the urgency of my need for help.

Another thing to note is that it did not matter to me that the emotions I was experiencing were rooted in thoughts that were not true. It did not matter in the moment that my inability to master those emotions was due to the chaos of chemical reactions caused by medications. The pain and the panic were just as real as if I’d just watched my legs get crushed in some tragic accident.

Lastly, it was horrifying to realize in weakness how easily the recognition of something true (few really could know exactly how I hurt) was twisted into falsehood (no one cares, this will never change, I’m all alone…) and turned into the opportunity for some very destructive emotions.

Traditional doctrinal language for this is “carnal nature, the old man, the flesh…” When our will is weakened, this beast of a thing thrashes about as in the throes of death. Even, I believe (not all doctrine teaches this, though I believe the Bible does), in the minds of those who have been redeemed.

Lifeline

We are all utterly dependent upon the grace of God to keep it together, and the mercy of God to hold us when it all falls apart. And I believe that the evidence of this grace and this mercy is most often more than merely an esoteric, internal experience. It is a very visceral, practical outworking through the words and actions and prayers of people just like you and me. It may end in an experience of the spiritual sort, and it most definitely begins there (love starts with God), but it is most often articulated through the concrete acts of compassion in flesh and blood conduits of God’s choosing.

2boys.jpgFor me this weekend it came through the likes of my boys Aedan and Eli, my mom and dad, good friends Dan, Debbie, Bruce, Mavis, Mark, and Ben, and my beautiful bride. The rescue God gave came through them. I’ve gone to great lengths this last week to chronicle the details of this experience (not all of it posted here), partly so I’d never forget, but mostly to help fortify the resolve of folks like you reading this to become the rescue in the lives of those you may know who suffer in these ways.

I journey through these wicked wastelands a handful of days each month, but some people live there. A few have taken up residence because they don’t want to leave. But maybe others are still there because there’s nobody who knows where they are, or how much they hurt, or how they can be helped. If nothing else, I hope my words this week have served to give voice to the answers to these questions, if not the answers themselves.

Another fun trip down the runway.

There’s so much more I could say, and I hope to, but not here. Not now. I appreciate the attention you’ve given to have read this much already, and I hope you’ve enjoyed it, but I’ve already pushed this blog well beyond what blogs were made to do. Any more would be material for a book, not a blog.

swimming.jpgBut briefly, for those of you who read these updates to know what we’ve been up to, I must tell of some real good times between the bad. Better said, the bad came between the good: Christmas with both families; a New Years solo retreat at Mount Olivet Retreat Center; a handful of speaking opportunities; a three-day trip to Michigan for a pastors/leaders conference at Mars Hill; a cold weekend at the Fargo Ramada with family (two trips down the water slide); a weekend at the Cotton Mansion in Duluth for our five-year anniversary; and plenty of life-shaping one-on-one with my boys.

There has been much good.

That said, at least twice we’ve throttled down at the end of the runway and turned around to take another run. It is hard to get off the ground. And with three more courses of this chemo/prednisone combo on the calendar, it’ll be summer before we’re able to do something more than spend fuel running back and forth down this runway.

home.jpgBut the run is still a rush. While it’d be as wrong for me to say I’m well now as it’d be for me to say I play football like Payton Manning, I sure don’t mind pushing these buttons. There’s no doubt here that when God has done what He means to do in and through this junk, it’ll pass.

Trusting that I am forever…

Still His,

Jeremy

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