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dcnovice -> DC Update: "All Just Trying to Live" (grim and graphic) (5/16/2014 6:51:05 PM)
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May 16, 2014
“All Just Trying to Live” (grim and graphic)
Dear Ones ---
Today was hard. Indeed, my first thought for titling this epistle was “Not-so-Good Friday.”
As always lately, coming to life in the morning was a challenge, not helped by gray rain (which mercifully vanished an hour or so later). I didn’t help matters by foolishly checking my work email, even though I’d already slated this as a sick day, given the need to spend the afternoon at Georgetown for tests.
The in-box was largely a volley of messages between Eve Harrington (my old-movie nickname for my “temporary” replacement) and our design firm about an idiotic addition to the magazine’s cover requested by the membership director. Typically, both the organization’s gifted in-house designers and yours truly had been left out of the conversation. Indeed, I’d learned of the change by chance, and the designers heard about it only from me. We all deplore the idea.
I wrote what I thought was a cogent, eloquent email suggesting we reconsider the plan, and both designers voiced their support, suggesting that the key players meet. Silence. A few days later, my boss sent a tepid email basically saying, “Thanks for sharing, but we don’t really care what you think.” It deepened my sense of how marginal I’ve become at work, which was dispiriting.
Despite lowness in body and mind, I somehow got myself fed, showered, dressed, and out in time to head to Georgetown. My afternoon agenda was the medical equivalent of running errands at a mall. I started at the check-in desk at Lombardi Cancer Center, picking up a prescription and an order for blood work. I trekked over to the outpatient pharmacy, only to discover they didn’t have the medication in stock. Then I headed to the lab.
I’d been there plenty of times before, but somehow the chairs seemed far more uncomfortable today, even with my trusty pillow. I also realized I’d forgotten to build waiting time into my schedule, so I was a bit anxious about whether the blood could be drawn and processed in time to convey the results to radiology before my 4 p.m. CT scans. It didn’t help to overhear the clerk making several worried-sounding calls that included my name.
Eventually, though, my turn came, and a tech successfully and painlessly stuck me—no mean feat—on the first try. He filled four or so vials, assured me that the results would be processed “stat,” and sent me on my not-quite-merry way. Next stop was the infusion center to see if a nurse could flush my neglected chemo port. They said to come back at three.
That left me an hour of free time, so I headed back to Lombardi, which has a lounge with the most comfortable chairs I could remember seeing anywhere in the hospital. (Mind you, that’s a low bar these days.) I settled on a sofa, but it wasn’t terribly comfortable. Still, I was reading an engaging memoir by retired Supreme Court Justice John Paul Stevens, and it took my mind off things for a while.
Then disaster struck. I felt a bulge in my ileostomy bag. That’s normal. Not so the stark odor that assailed me a second later, nor the teacup-size stain on my shirt. The latter had never happened before and was not a happy novelty. I hauled my man-purse to the bathroom to repair the damage, only to find it much, much worse than I’d feared.
The plastic “fabric” of the bag had torn away from the adhesive (still admirably doing its job), and the contents had oozed out. I quickly realized no repair would work. My only option was to remove the bag entirely and replace it. That’s a time-consuming and taxing process I hugely prefer to do at home. In fact, I’d only once before changed a bag elsewhere. Not surprisingly, I cried and cried and cried. I have wept more since my diagnosis, I think, than in the whole rest of my adult life. I felt terribly alone and toyed with ringing the call-bell, though I’m not sure what I’d have asked a nurse to do. What I really needed—someone to hold me—probably wasn’t a possibility.
Somehow, I found the grit to change the damn bag, then I took a breath of relief. It was short-lived. As I went to put myself back together, I realized my clothes were shit-spattered. The shirt stain had grown to cover a dinner plate, and waste lined the insides of my shorts. More tears. I cleaned myself as best I could, but I looked even worse than I felt. My clothes were a wreck, my face was scarlet, my eyes were bloodshot.
I lack the courage to imagine how I smelled.
But Ivan the Ileo wasn’t finished with me. I crawled back to the lounge, sat down, and only then noticed that waste had run down my right leg. That explained the startled looks I’d noticed—or thought I had—in the waiting room. I dug out some wipes and tidied up yet again. Then came the question of what to do next. Should I flee? Or stay, rank and ruined, for my much-needed CT scans?
I stayed. I read a while, then trudged back to the infusion center. As I walked, I held my inevitable tote bag right in front, hoping no one would see my state. After a half hour on another tough-to-take chair, I was led to a chemo bay, where a kind nurse accessed my port. She had the good idea of leaving an IV tube in it, so that radiology would not have to pierce me afresh.
Last stop: radiology. I spent more time sitting uncomfortably, but eventually my turn came—while I was in the bathroom, naturally. Here fate smiled on me a bit in the form of a tech aptly named Jewel. She was kind, efficient, and compassionate about my obvious embarrassment from my ileo aroma. After my first scan, of my head to determine whether there’s any more neck damage, I needed to unzip and peel back my soiled shorts. Great.
I was on my back at that point, so her colleague, a true gentleman named Carlyle, helped me. I apologized for the mess I knew he’d find, but he answered softly, “You’re all right. We’re all just trying to live.” It was one of the kindest, wisest things anyone’s said to me on this whole long journey.
The scans went well, and I was delighted to be done an hour before I’d expected. It had been a long afternoon.
Yet even those hard hours had their gifts. I had a good book and, miraculously, the concentration to enjoy it. I’d learned anew the truth of a promise made by the shrink in T.S. Eliot’s Cocktail Party: “You will find that you survive humiliation*, and that’s an experience of incalculable value.” And I’d received good, even tender, care that made me both grateful and, as a Hoya, proud to have entrusted Mother Georgetown with my vulnerable self.
I know this is a long one, so special thanks to anyone who made it this far! Strange as it sounds, one of the ways I coped this afternoon was to think of how I could turn my woes into words, which is oddly healing.
Love to you all!
Cheers,
DC
*And this humiliation had, trust me, absolutely no erotic component.
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