Times editor Dana Jennings writes each week about coping with an advanced form of prostate cancer.
I’m tired.
I found out 10 months ago that I had prostate cancer. Since then, I’ve had surgery, started hormone therapy and finished 33 sessions of radiation. And, man, it wears you out.
But the weariness caused by prostate cancer isn’t a constant. It fluctuates from week to week, day to day, even hour to hour. In this nano-age of super-instant gratification, we have lost sense of organic time. Prostate cancer, though, has planted me more firmly in each moment. One of the things that I’ve learned, as I try to pay attention, is that cancer’s paint box includes many shades of fatigue.
It starts with the diagnosis. Knowing that you have cancer exhausts you, stuns you into listlessness. Even so, there’s work to be done. There are doctors to be interrogated, a host of tests and scans to be had, treatment decisions to wrestle with and insurers to kick in the shins. With all that going on, it’s hard to get a good night’s sleep.
Next there’s the physical fatigue of treatment. I spent three nights in the hospital after my surgery, and that was the time I experienced fatigue that’s beyond fatigue, a fatigue so palpable it seems you could touch it. I wanted to shrivel into the fetal curl of a woolly-bear caterpillar, spin a cocoon of sleep and tell my doctors to wake me when it was time to leave. I learned that sleep is bliss, that sleep heals, that sleep is the essential post-op drug.
At home, I had to accept that my fatigue was in charge. Mornings were especially slow as I creaked and winced out of bed. I felt like an old car that needed to have its crankcase oil heated before it would start.
I soon learned that just shuffling around the block can be draining, that there’s power in the spontaneous nap, and that you need to set strict visiting hours. Your fatigue – your body – needs what it needs.
But just because you’re spent, it doesn’t mean you can sleep at night. I became buddies with the sleep that isn’t sleep, staked to my bed by pain and anxiety. No matter where I tucked the pillows, I couldn’t get comfortable. No matter how good the music murmuring from the CD player, I couldn’t be soothed. (Is that a blood clot floating in my catheter tube?)
A prescription sleeping pill helped solve those problems. For the sake of my wife’s repose (and sanity), we decided to sleep in separate beds for two weeks, until I felt better and the catheter was out.
I also dozed off where I least expected to. During radiation, I sometimes napped inside the TomoTherapy machine, lulled in my lassitude by Pink Floyd and Metallica. It was the radiation, which lasted more than seven weeks, that resulted in the most profound fatigue.
Toward the end, I was totally washed out. I felt worn down, like a pencil nub that couldn’t possibly be sharpened one more time. It was hard to focus – on reading, on work – I wasn’t listening as well, my legs were heavy. It took just one stout with supper to knock me out for the night.
Even now, a month after my last radiation session, the fatigue still swells late in the afternoon and breaks over me. When 5 o’clock rolls around I’m more zombie than employee. I’m in bed by 10 most nights. And weekend naps are nonnegotiable.
There’s one more subtle shade of fatigue: the fatigue of talking about your cancer. From the diagnosis, through treatment and after, the well-meaning questions seem to never stop. How are you feeling? What’s your Gleason? Where’s your P.S.A.? Will you need chemo?
It sometimes feels as if you have become your cancer or, at the very least, its spokesman. And it can be wearing. But I found that it’s crucial to shake off that languor and learn to speak. Sleep heals, but talking heals, too.
Like Scheherazade and her 1,001 nights of stories, I think we tell our tales so that we, and others, can stay alive — no matter how tired we might get.
Comments are no longer being accepted.