« Where Should GM File for Bankruptcy?--Skeel | Main | For Larry Summers--Stuntz »

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

TrackBack

TrackBack URL for this entry:
https://apps.law.upenn.edu/weblog/mt-tb.cgi/469

Comments ( 6 )

I glad to hear that you're doing better. I'm curious how this past year has impacted your faith. I'm sure it has brought you comfort, but has it changed how you approach God?

Sometimes, people of faith ridicule non-believers for not seeing what seems obvious to them: that there is a God in this world.

Yet faith is hard.

So how do hard times, like living with cancer, affect faith?

It's a fair comment, and one I want to answer in a post soon. Here's a rough first crack at an answer, at least for me; it comes in two parts:

First, I have no proofs, and no ridicule for those who see things differently. I admire all those who wrestle with the question why we're here, and with the question whether THAT question makes any sense.

The second part is this: I find it much easier to believe in a perverse God than to believe in none at all. Nine years of chronic pain, of which about six years have been constant and mostly severe, have left me with the fixed and unchangeable sense that this is wrong--that my body is not meant to fill me with agony, that this is not what I was made for. Not "wrong" in the sense of a mistaken piece of product design but wrong in deeply moral terms: like a less extreme version of the wrong that comes when a child starves or dies of some awful disease.

Cancer is like that, only more so: Your body is literally eating away at you, like some acidic poison. Talk about a house divided against itself. And cancer treatment fights that poison with a poison of its own.

These sensations give rise to anger, bitterness, determination, and a host of other feelings. But never do they leave me with a sense of meaninglessness: if they did, I'd have ended my own life long ago. I have never so clearly perceived moral order as during these years when my own condition, and even more so the condition of those I see around me when I'm hospitalized or undergoing chemotherapy, violates that moral order.

And yet, for all the ugliness and disease and pain and death, I also perceive something else: indescribable beauty, and the unstoppable power of small acts of love. A world that, sometimes, had seemed to me small and indifferent now seems filled with a strange mix of incredible goodness and the worst awfulness imaginable. Life at its loveliest and most intense seems to spring from death and ugliness.

To me, that suggests a world made for beauty and moral order that has been corrupted, twisted, bent. Either God is on the side of the disorder and corruption, in which case He is my adversary, or He is on the side of order and beauty, in which case His failure to put a stop to the awfulness seems a mystery.

I don't have a neat solution to that mystery, but Christianity does have a response to it: the God in Whom I believe took the worst awfulness and ugliness and indignity on Himself: as though every piece of hell for all of human history was concentrated on a particular person at a particular point in time--and that person took it, and overcame it. So He can, and I believe does, come alongside me and share in it, grieve over it, and give me the stamina to endure it and the wisdom to live in its midst. I don't believe those things exist in me; they come from some force as alien to my mind as the chemo drugs are alien to my body.

There is a line in the Shawshank Redemption that captures the essential point. The narrator tells of prisoner Andy Dufresne's escape, and notes that he had to crawl through a sewer line to get out: "He crawled through a river of shit and came out clean on the other side." I believe God the Son did that, and did it so that the ugliness and indignity need not stick to me, and to countless more who suffer much worse, and with much less justification.

The upshot of all that is belief in a God who can be trusted with my illness, because He does not stand apart from it, but participates in it and lends His love and his power to the experience. And a God who helps me live in a way that lends value to the illness and suffering, makes it productive of something good, even as it remains the awful business that it is.

All that is a poor explanation, I know. It does not seem to me obvious, which is why I can't bring myself to criticize those who refuse to buy it. But I hope it helps to answer your question.

Dear Bill,

Whatever comes, know that you are loved of God in Christ Jesus and that love overcomes all things. May you be well in HIM. Amen.

Not bad for "a first rough crack." :) While I started reading this blog for the pushing and prodding it gives to my faith in the political/academic/arts/culture realms, what I really keep coming back for are your writings about your cancer. The vitality of faith, while living in the shadow of this enemy, that you share with your readers is always a profound encouragement to my own weak faith. Thank you.

Thanks Bill for your answer. I suppose living in this world is a mix of the ugly and beautiful. As CS Lewis put it:

“Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer. I not only live each endless day in grief, but live each day thinking about living each day in grief.”

In many respects, we are living in the shadow; a partial darkness. But there's glimmers of light as poet Mark Strand put it:

I am sure you would find it misty here,
With lots of stone cottages badly needing repair.
Groups of souls, wrapped in cloaks, sit in the fields

Or stroll the winding unpaved roads. They are polite,
And oblivious to their bodies, which the wind passes through,
Making a shushing sound. Not long ago,

I stopped to rest in a place where an especially
Think mist swirled up from the river. Someone,
Who claimed to have known me years before,

Approached, saying there were many poets
Wandering around who wished to be alive again.
They were ready to say the words they had been unable to say-

Words whose absence had been the silence of love,
Of pain, and even pleasure. Then he joined a small group,
Gathered beside a fire. I believed I recognized

Some of their faces, but as I approached they tucked
Their heads under their wings. I looked away to the hills
Above the river, where the golden lights of sunset

And sunrise are one and the same, and saw something flying
Back and forth, fluttering its wings. Then it stopped in mid-air.
It was an angel, one of the good ones, about to sing.


All the best,

Steve

It's nice to know that you guys are helping educate the world about cancer. Thanks for the post.