It’s been nearly a year now. I recently checked my journal from last spring. I hadn’t written much, but I was sick a year ago. Memories have always been seasonal for me, like they are for most, so when the air begins to smell like it did one year ago – when I was sick and didn’t know it; when I was told I was sick, and that I’d get better; when I was cryptically explained how I’d get better – my mind can’t help but sweep through the experiences of this last year with vivid clarity, and take note of how different the experience has been from what my expectations were.
Round 1 (May-June 05) was supposed to be terrible, the worst of the whole deal. Instead, it wasn’t that bad. I actually wish some of the other Rounds had gone so well. Round 2 (July-August 05) we anticipated to be quick and easy, except for the procedures. The procedures turned out to be the easier part. And the whole thing was twice as long as long as we’d expected. Round 3 (October-December 05) was going to be long, we were told, but more or less like an extended break in the middle of it all – the eye of the hurricane – I’d be close to living a normal life, except for the fatigue. There was nothing calm about it. The reactions in my body surprised my doctors. I was the sickest I’d ever been in that Round, nausea for days on end. Did little but be sick for three full months. Round 4 (January-February 06) became the only delightful surprise of the treatment. For some reason, I thought I was going to spend the whole time in the hospital. I was there two days. Two days out of two months, and one of those months not only was I not sick, I felt the best I’d felt since this all began.
But then I began the descent into Round 5. It took me such a long time to recover from 4. Still haven’t, really. I was tired and susceptible to infections, and I picked up a bunch of them. Spent more time in bed. Back pain increased. I began Round 5 (March 2006-May 2007) fully expecting this “maintenance therapy” for cancer to be much like my maintenance therapy for Crohn’s: hardly noticeable. I expected Round 5 to be my opportunity to get back up, brush off the experiences of this last year, and march triumphantly (and gratefully) back into life and responsibility, health and vitality.
So since May of last year, it was my understanding that that first month in the hospital was going to be the worst of it all, Round 4 was going to be nearly as bad, everything else in between would be bearable, and Round 5 was going to be a piece of cake. In any case, I’d be up and back on my feet come the spring of 2006. I set my sights on playing softball with the Emmaus Men’s League in May. In my heart I charted a course for the year like I used to determine how I’d get from Minnesota to the coast and back on one of my tours, deciding before I left where I’d stop along the way. Often on the road, the experiences en route would redirect my journey, and the trip itself would change me. This journey through cancer has been like that, but much less fun.
Every Round of chemo affected my body, changing it. A medicine I took and hardly noticed last June would make me nauseous in October. You’d think a body might actually get used to chemo, and hardly notice it eventually. Instead, every time I’ve been required to bounce back from a chemo hit it’s taken me longer, and it’s been harder, than it did or was before.
Since beginning Round 5 just over six weeks ago, I’ve had a cold and/or a fever of some sort for four of those six weeks. I’ve been immobilized by nausea and persistent pain in my back, legs, hips, and wrists. I look at the skin on my hands and arms, and it looks thin and wrinkly, almost transparent, like there’s not enough of me in it. For the last week and a half, I’ve mostly forced myself to eat, able to walk around and think productively for little more than three or four hours a day – two mid-morning and two just before bed. The rest of the day comes and goes as a blur of bed-rest, books, naps, and a two-year-old boy crying because his dad can’t get up and play.
I don’t write all this as some sort of emphatic tantrum demanding that my misery be noticed and counted among the worst. It’s not. I know that. I myself know of others who have suffered or are suffering longer and to a greater degree than I. Sometimes I actually wonder if I’m exaggerating, because when I’m telling people about it, I occasionally read such a response in their faces. Then I think I’m just being irrational about it all, complaining about an unreality. Until I pray. Then there before Abba, I realize I’m not exaggerating. I’m not exaggerating, and He knows I’m not exaggerating. In fact, He invites me to tell Him more. To tell Him how my heart just can’t bear any more. To tell Him how disappointed I am that I’m not well, and that the road to recovery seems so long and difficult.
That’s one thing I love about Him. Before He amazes us and stops our mouths in a display of His might, He invites us to pour out our complaints before Him, even in the ungrateful manner in which I so often do. And He listens. Then He stores up our tears in bottles. Imagine that, a heavenly storeroom of tears… yours and mine… they matter to Him.
Call me an ungrateful fool, and I’ll say, “Yes, I am.” A tumor threatening to take my life in a matter of weeks was eliminated from my body in a matter of days without much consequence to speak of. I’m married to a princess and a queen and the most remarkable mother I’ve ever seen in action. God gave us Aedan and He gave us Eli in the middle of this mess, and He sustains us still. He’s shown me clearly how He holds those who are His, how He loves His own not because we’ve got anything to offer, but because we’re His, and that in the midst of all my ranting, all my ingratitude, and all my rage, I belong to Him.
So though an ungrateful fool, I’m still grateful, but not for everything. And the Bible says I should be. “In all things give thanks.” I guess that’s what bugs me. Not that the Bible says I should be grateful in all things, but that it does say that and I’m not. I’m not grateful in all things, and I’d like to be. I wish I were.
And I love to write. It’s one way I pray. It’s one way I come to understand what’s going on and what’s gone on in ways that don’t necessarily make sense but make peace with my insides. Yet right now I know I’ve written more than my body can handle. I’ve felt the burning in my wrists since the second paragraph, and experience tells me it will be much worse tomorrow. So I must end here.
But first I should make quick mention of my most recent phone visits with my oncologist. Doctor Hurley said I could ditch both my oral chemos for the next two weeks (can’t say how glad I am for that, and how I wish he’d say the same for the duration of my treatment). And then I see him again to begin a third 28-day cycle. There we’ll try to figure which drug is causing the most trouble for me (I’ve a hunch both of them are up to no good), and drop or adjust the dose accordingly.
Until then, we long for healing, for strength, and for gratitude. I’ll never forget when my mom first told me we could pray to be grateful. And I’ll never forget the first time I noticed God had answered that prayer. Pretty cool.
Hope you’re having a happy spring.