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.
I’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.
At 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.
You 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.
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.
But 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.
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.
It’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.
Okay, 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.