The Trough

March 6, 2010 at 5:09 pm (Uncategorized)

It’s a lovely Saturday afternoon. Steady sunshine has melted the piles of dirty snow and the thick carapace of ice on our driveway. For the first time in many months, the sun warms, instead of just functionally illuminating the short days. Spring feels possible. The sky has lost its pallor and rolls off endlessly above the foothills and the trees to the horizon. I can almost hear seeds rustling and coming to life in the soil, worms awakening and pushing through their tunnels in the cold earth. The bare tree branches clatter with the possibility of growth.

We all sensed this shift in light and heat. Andrew sprung into our room early in the morning. He was electrified with energy to be outside. He wanted to go to the park, to ride his bike, to splash in the deep puddles the retreating snow had left behind. At first, Jay wanted more sleep and tried to convince Andrew to watch his favorite Scooby Doo installment about ghost pirates for the thirtieth or fortieth time. But Andrew would have none of this. Even ghost pirates couldn’t make him forget about the puddles and the sunshine just outside. Jay relented. As they prepared for an outing, I even heard him talk about going for a hike.

I am not caught up in Spring Fever. When Andrew dashed into our bedroom early this morning to announce the bright beauty outside, I burrowed deeper into our flannel sheets and ignored him. As I hoped, Jay answered Andrew’s summons and left me alone in bed.

I’m not just a grump. I’m still struggling with the after-effects of the chemotherapy I got on Tuesday. Since Cytoxan has a cumulative impact, every dose hits me a little harder. I am more exhausted, more nauseous, spend more time throwing up, and recover more slowly every time I get an infusion of Cytoxan. I’ve tried to explain to my six-year old son the perverse logic of treating neurosarcoidosis with chemotherapy. The fact that I feel lousier means the medicine is working, that it is building up in my brain and bloodstream. When I have attempted to convince him that my feeling worse is actually a good sign, Andrew usually gives me a hard look that warns me not to push my luck with flim-flam excuses for staying in bed.

Today I’m having just as much trouble as Andrew grasping this paradox of making myself feel bad now so that I’ll feel better later. It strikes me as a load of Pollyannaish drivel. Today I’m having a hard time with everything. I melodramatically want not to be. I don’t feel suicidal, just overburdened with the pathetic trappings of my existence. I don’t want to fuss with prying the anti-nausea medicines from their complicated foil packets, don’t want to feel the jolt of pain as my feet hit the floor, don’t want dutifully to gulp down a bland breakfast only to vomit it back up in less than an hour. I especially don’t want to disappoint my small boy who wants to celebrate the arrival of Spring, while I want to bury myself under a protective sheath of ice and snow.

This happens every other week. I have grown accustomed to the physical and emotional toll of getting the Cytoxan, but I am still caught off guard by the exhaustion, the depression, the vomiting, the joint pain, and the mouth sores. You’d think that after nearly two years of this rigmarole, I would no longer be surprised when I don’t bounce back from chemo as quickly as I’d like. Nevertheless, I am surprised anew every other week. Surprised that I sleep so much after getting Cytoxan, surprised at how nauseous the drug makes me, surprised at how long these symptoms stay with me.

I am somehow able to hold two truths. I am continually shocked at how bad the Cytoxan makes me feel. Yet I also believe the Cytoxan has significantly reduced both the number and severity of the worst symptoms caused by my neurosarcoidosis. In order to to believe that the Cytoxan is making me better, I’ve had to relinquish old ideas of what healing looks and feels like. I won’t have my own Lazarus moment, when I cast off my disease and am returned to my former life and health. Curing my sarcoidosis is much more humdrum. I chip away at this disease every other week with each dose of chemo. I have few epiphanies and no startling revelations of health. Instead, my treatment is more like reporting to a job I don’t especially relish.

The Cytoxan is certainly chipping away at me along with the disease. As the side effects from the drug become more pronounced and last longer, I have to fight not to wallow in self-pity and not to give up the struggle to be healthier. But I have a harder time “bouncing back” (there is not actual bouncing involved) from each treatment. This makes some sense. Because the drug makes me so tired and nauseous, I spent most of the days after each Cytoxan infusion in bed– sleeping, trying not to throw up, or listening to a book on my ipod. So when I want to cast off my bed sheets and reclaim my life, I have to work all the more to regain basic functions that I lost in all those hours of sleeping. I have to reintroduce normal food to my stomach. I have to build back my body’s strength so that I can sit upright to work, walk around the house, make dinner, catch up on e-mails, visit friends, talk with Jay, and play with Andrew. This might not sound like much, but spending four days out of fourteen in bed takes its toll on the body’s endurance and strength. Each dose leaves me in a trough. I have to scramble and claw and fight simply to get back to the point at which I started. And then it’s time to launch the cycle all over again and get another Cytoxan infusion.

Before I got sent off to Chronic Town, I was a big believer in “powering through” physical and emotional challenges. This coping strategy was probably left over from my bicycle racing days. As a race was winding up, I needed to put my head down and power up the last big climb before the finish line—no matter how lousy and wobbly I felt. Long after I gave up competitive cycling, I held onto this notion that I could “power through” difficulties. When Jay and I were getting ready to move to Palau for a year, we put off sorting through our stuff and packing the things we wanted to bring along to the tropical islands from the things we wanted to lock in a storage unit until we returned. No problem. We powered through. Neither of us slept for a couple of nights, but we got our furniture into storage and our clothes shipped to Palau. Similarly, when I was writing a reference book on Internet resources for history teachers, I let myself fall behind—way, way behind—the schedule I’d created for myself. No worries. I powered through. It certainly wasn’t pleasant to sleep so little for so many days, but I met my deadline and finished the book. My attitude towards exercise has been especially colored by my old biking mantra of powering through. Although I’ve never been as overweight and out of shape as I am now, I had a few bouts in the past of letting myself gain a few pounds and not go to the gym. I suppose I didn’t worry because I would soon decide to get back into shape and then dive into a vigorous exercise and diet plan. Sure, it was unpleasant for a few days, but I powered through.

It makes me a little wistful to write about these times. I have tried to power through a problem and get myself back into shape, back to working full time, back to at least having an uncluttered kitchen table. But in my post-sarcoidosis and post-Cytoxan life, I simply cannot. If I attempted to ride my stationary bike for an hour (or even twenty minutes), or if I opted to hike with Jay and Andrew to the summit of Mount Helena, I would power myself right to the emergency room. I know because I’ve tried. I have lost to my disease and to Cytoxan basic conditioning and stamina. I emerge from each Cytoxan treatment to find that I’ve lost a few feet of solid ground, that I’m standing in a trough of fatigue, de-conditioning, and nausea.

One benefit of getting Cytoxan for so many months is that I should know what to expect—as long as I don’t listen to my inner barrage of self-loathing and over-expectation. But I still give these chirpies too much time and volume in my head. Listening to the soundtrack of “you’re fat, lazy, and malingering; all you need to do is get up and get busy” isn’t making it any easier to return to normal life after getting chemo. In fact, the chatter about how I should be feeling better four days after chemo does nothing but demoralize me.

I am learning—slowly but surely—that the hateful script in my head is slowing my progress. By demanding myself to feel better and be more productive after every dose of Cytoxan, I am digging the post-chemo ditch a little deeper. I am ridiculously hard on myself. I’ve made the past two years of getting chemo even more difficult by lecturing to myself that each bout of crushing fatigue and non-stop puking isn’t really hard at all. Powering through a final climb in a bike race is one thing. Returning to life after chemo is quite another.

I am trying to allow myself to live my experiences with chemo as they truly occur—not how I think I should feel, could feel, or might feel. It is immensely difficult to accept the reality that I feel really lousy on the Saturday after I get chemo on a Tuesday. In the past, I haven’t let the truth stand in the way of a plan. No matter how much evidence there was to the contrary, I blithely made plans for these Saturdays—only to then be forced to cancel and feel a little worse about myself.

I don’t like Chronic Town. I write about living with a chronic illness because I want to make something true and maybe even beautiful emerge from the barrage of tests, drugs, and fears that characterize my existence. But how can I accurately portray Chronic Town if I keep pretending half my problems are caused by laziness, not by the insidious disease occupying my vital organs and requiring an ass-walloping treatment plan? I’d desperately like to be able to power through this Saturday’s difficulties. My mouth hurts because the chemo has opened up little sores on my tongue and above my teeth. I want nothing more than to sleep. And I wish I could stop feeling nauseous and stop vomiting. I wish I didn’t have to claw my way back to level ground after being plunged down into this chemo’s trough.

But this is what I have. Hating and berating myself for being sick and for getting chemo won’t make it otherwise. Pretending that all I need is a little more willpower won’t make me well or make my life better. In fact, giving in to the fantasy of self-loathing—that with more gumption and less whining I’d be fine—will rob me of what is real and what is truly mine. Yes, I have to dig myself out after chemo; yes, I am tired. But I am thinking and writing. I am growing and learning.

I can’t be outside in the sun today, but I can feel its warmth within me nevertheless.

4 Comments

  1. Barb said,

    I’m glad you are writing every day and I am glad you are putting down the shovel. Side note… try rinsing your mouth with aloe vera juice.. it can be helpful. Love your writing, thank YOU.

    • Sandra Ahten said,

      Rebecca, This is so heartening. To be able to love yourself through this hell seems to be the only right thing to do. I’m glad you are doing it. And I can’t believe you are writing everyday. Where is this miracle coming from? What a gift to us.

      • Rebecca Stanfel said,

        Dear Sandra,

        It IS a miracle to be able to write every day. Part of it is coming through my feeling better–maybe some of the new medications are working, maybe the passage of time is working. Part of it too is applying some of the lessons I learned during my work with you as my life coach. I determined that writing on my blog and for my book is a priority. After some serious sadness that I couldn’t write for as long as I wanted each day, I decided to commit instead to writing for as long as my head would let me. It’s amazing how much I can do in an hour–an sometimes longer!–when I stop worrying about not being able to write for three hours and actually write for the hour I have.

        I appreciate you reading and taking the time to comment.

        All the best,
        Rebecca

    • Rebecca Stanfel said,

      Hi Barb,

      Thanks for always cheering for my successes and sharing my happiness. You are an amazing friend. I also appreciate the many little tips you have for making life a little easier. I have bought aloe juice and am ready for my next chemo!

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