Academic

Chemo's End, Cancer's Closet--Stuntz

By David Skeel and Bill Stuntz

On Wednesday of this week, I had my last chemo session--at least for awhile and maybe for good.  I'm not quite done--I'll carry around a pump with a drug called (believe it or not) 5-FU until tomorrow afternoon.  Cancer treatment isn't usually funny, but that name cracks me up.  Anyway, once I'm unhooked, I'll be finished with chemo until the cancer returns, and perhaps even then.  The odds that I'll survive another five years or longer are about 30% now, which is very good indeed for a patient with stage 4 gastrointestinal cancer.  Even if I'm on the wrong side of those odds, my chances of living at least another couple of years are significantly better than they were several months ago.  All of which is very good news, for which I'm very grateful.  God is good, even--especially--in hard times.

That good news means my life is about to change.  Save for three weeks in June, the past nine months have been spent having surgery, recovering from surgery, or having weekly chemo sessions (plus a couple of days of the amusingly named drug every other week).  Those chemo sessions and the days between them have been rough--either because that's the nature of the relevant drugs or because I'm unusually susceptible to the side effects.  Maybe a little of both.  Nausea and fatigue have been more or less constant.  Along the way, I've suffered skin rashes, mouth pain, some bleeding in fingers and toes, various other irritating conditions that are too gross to describe, and--worst of all--increasing stupidity.  I so, so look forward to recovering the more-or-less normal use of my body, not to mention a functional brain.

It's hardly surprising that the prospect of finishing cancer treatment--again, at least for the time being--is very pleasant indeed; I can't type the phrase without smiling.  What surprises me is that, in some ways, the prospect is also a little sad.

The reason is best described by a line I heard from a friend--another cancer patient--a few years ago.  She said that, with rare exceptions, people want you either to get well or die.  Hovering in an intermediate state for a long period of time--living under cancer's cloud--is a hard circumstance to communicate or understand; I'm not sure I understand it, so I can hardly expect much comprehension from anyone else.  Plus, that intermediate state is invisible.  Surgeries and chemo are salient:  I walk around with that pump slung over my shoulder.  Weight declines.  Often, hair falls out.  People can hardly fail to notice.

Once the chemo is done, all that noticing will cease, pretty abruptly.  I'll return to a state that I've come to know well over the years:  sick, but not visibly so.  For the past nine years, I've suffered from chronic pain in the base of my back and the top half of my right leg.  Like incipient cancer, pain is undetectable to all but those who suffer it.  For me, it feels like an alarm clock taped to one ear, with the volume turned up--and I can't turn it back down.  But to all outward appearances, once I shed this stupid pump, I'll look fine:  better than usual, actually, because I lost some weight that needed losing.

Welcome to a phenomenon common to those who live with chronic illness of all sorts:  life in the closet.  The closet is real even if the illness is visible:  as my friend said, no one is quite sure what to make of ongoing pain or disease, so the default option is to pretend it isn't there.  If the illness can't be seen, the closet door is locked tight. 

That's surprisingly hard to deal with.  A large fraction of my mental energy is spent managing back and leg pain, the drugs I take to hold the pain in check (barely), and the drugs that deal with the side effects of the first set of drugs.  Add to that the energy used to manage cancer prospects and chemo side effects, along with the drugs that deal with THOSE side effects.  Squeezing out the time and, especially, the concentration needed for effective work is very hard indeed.  It will get a couple notches easier soon:  thanks be to God, and to many answered prayers.  But it still won't be easy, not as long as cancer's cloud looms overhead, and not as long as that alarm clock rings.

For those of us who live under that cloud--the treatment is done for the time being, and we wait for the disease to return, hoping it never does--or in chronic pain's grip (or, for me, both), these conditions are a large part of our identities.  I don't HAVE stage 4 colon cancer plus back and leg pain; I AM those things.  Our medical conditions define us; certainly mine define me.  But the defining can't be seen or touched or tasted.  I live in a secret world, a world my friends and loved ones cannot know--and, I pray, one they never will know.  Secrets seem shameful, and I am prone to feel shame about that secret world, as though it were the product of some character flaw, or perhaps the consequence of my failing to pray as I should.  If only I had lived better or prayed properly, I wouldn't inhabit this strange and terrible unseen place.  I know that proposition is false--the world of suffering is much messier and more arbitrary than that--but the feeling is hard to shake.  Now that chemo has come to an end, shaking it will be a little harder than before.

Full post as published by Less than the Least on November 20, 2008 (boomark / email).