Joanna Catherine Scott

(placeholder)


Secretly

hoping chemo

will give me

SUPERPOWERS.



It was just a routine colonoscopy, or so I thought until I woke up to someone blurry talking to someone else blurry about stitches.

     “Stitches?” I said. “Did somebody say stitches?”

     At which one of the blurry someones turned into a nurse, who said in that terrifyingly gentle way of nurses, “You’ll have to talk about that to your doctor.”


BUMMER!

       I was in one of those cubicles with a shower curtain across the front and each time someone came in or out to do whatever it was they were doing with charts and machines, I saw bits of my husband flicker in the corridor. He did not come in and from the flickering bits I got the impression bad news was about to come

     Which it did, in the form of my very pretty, very cheerful surgeon who told me she had “got it all,” which took a while to translate itself inside my head into the information that I had just had surgery. “I took quite a large slice out of you,” she said. Out of my anus, right at the entrance, through the sphincter to the outside world. “Only one lymph node,” she said, and I had an image of a slice of pizza with a single olive half embedded in thick cheese.

     “Oh,” I said, and then my husband came in looking husbandly and protective, ready to serve, which the poor man was going to do for weeks because I am a wimp, and because, I suppose, minute to minute service was his way of blanking out his fear for me.

     “I had surgery,” I said, shivering in my heated blanket––they keep the hospital at almost freezing point––and he said, “Yes,” because of course he already knew.  I had signed a piece of paper giving him the right to make the decision for me if it turned out that taking a large slice out of me was the recommended thing. Not that we’d expected it. I’d had a six month check up ever since my brother in Australia had a grapefruit grow inside his colon fourteen years before. No, don’t say, “I’m so sorry.” He’s not dead.

     “You warm enough?” my husband said. “You need another blanket?” So practical. So just like him.

     That man loves me. His name is Joe. Not Joe for Joseph, just plain Joe. Joe Junior, actually, because his father also was plain Joe. I could tell, now that I could see all of my plain Joe, or at least the all that I could see sitting beside me on a molded plastic chair, that he had been through quite a trauma while I lay peaceful and unconscious. And even though now conscious, and even though I should have been enormously upset, I was in a state of grace, drug induced, but that’s the way of states of grace. And after all, the surgeon got it all. A little pain, a few days prone, and all would be okay.

     It was just occurring to me to wonder what one would do, if one were a surgeon, with a large piece of someone’s anus. Maybe microwave it and feed it to the dog. No, of course not that, because now she was telling me it had gone to the lab for analysis “just in case,” and I was too dopey to ask in case of what.

     “One month and you’ll be back to normal,” Dr. T said a projection that, on later and more conscious consideration, would seem overly specific, although it would turn out to be dead on. Because, you see, I was at Duke Hospital’s cancer center, probably the best place in the world to have your anus sliced. Dr. T has a reputation as the best of the best and she’s also very nice. In fact everyone who works at Duke is very nice. They are all such very nice people, nurses, doctors, orderlies, people behind desks who check you in and out, volunteers with ginger ale and cookies, people in comfortable shoes walking up and down the corridors with stethoscopes or clipboards. It makes one wonder if some clever young researcher has developed a secret nice injection. No job here until we nice you.

     There’s nothing foolish you can do to make them cross. You can never be too late because you’ve been stuck weeping on the toilet, or too early because you are confused today, or cry and act pathetic, or show up unwashed and with your hair on end because you barely had the strength to make it out of bed, or even if you soil yourself. They do not bat an eyelid. They are nice.

     I was contemplating the total waste of one whole month out of my life when one of these nice people, the blurry figure who had turned into a nurse, asked me if I thought I could stand up. Which I thought precipitous, but figured I could do it, and so they sent me off across the passage to the bathroom where I had a pee without any trouble and didn’t think about the part of me with stitches because if I do not think about whatever injury I might have done myself or had done to me, I am fairly likely to stay upright.

     The journey from toilet to wash basin was a little fuzzy, but I made it, and back across the passage to the great big padded lay-back chair and the smiles and “Well dones” of the nice ones.

     “So,” a nice one said, “think you’re ready to go home?”

     “I don’t know what to do,” I said, but it turned out that Joe had detailed instructions both in his head and on a piece of paper: diet, care of wound site, date for check up, warning indications, all that stuff. So they sent for a wheelchair and Joe went off to bring the car around to the parking deck that backs onto the recovery room.

     A nice orderly appeared with the wheelchair and I was rolled along the passage and parked by the checkout desk to wait. Sitting there alone, my good sense began to slide and I allowed my thoughts to center on my backside. What brought it to mind were the last words of Dr. T, who had told me I was lucky not to have a “bag,” which, not so long ago in medical history, I would have had because back then she would have taken my rectum out entirely and I would have had to spend the rest of my life with, to quote from Wikipedia, “a medical device prosthetic that provides a means for the collection of waste from a surgically diverted biological system.”

     Which being translated means I’d have a hole in my belly with a bag attached into which my feces would freely fall anytime at all, without, I presume, warning, maybe when I was being introduced to the president or up behind a microphone waxing lyrical or trying––horrors!––to make love.

     It was this colostomic image rather than the slice itself that started to bring on the faint. Being an experienced fainter, I recognized the early signs. Get your head down, keep on breathing, tense every muscle in your body, tense it hard. And announce yourself.

     Which I did. “I’m fainting,” I announced.

     This triggered startled exclamations and a scurry back to the big comfortable lay-back chair, in which I was laid back, a cold rag was set upon my forehead, a blood pressure sleeve was attached to my left arm, and one of those little snappy things that fit onto your finger was snapped onto my finger.

     “Keep breathing,” someone said, and I was diligent. I kept on breathing until someone said, “You’re looking better.” I agreed I was, and so at last they got me out the door.

     At home, Joe helped me into bed, where I lay still half stunned while he went off for prescriptions, special food for someone with a wounded anus, a contraption called a sitz bath in which I was to soak my sore backside. And water, drink your water.

     So I drank and soaked and my body did its magic, so much so that I almost felt it was a waste of time to go back for a check up. I was doing very nicely, thank you.

     

As it turned out, I was not. Dr. T burst that bubble. Joe, who had been more concerned about me than I had been about myself, looked stunned. I don’t know what I was. The great scythe wielder in the sky seemed like a story told to someone else. Because she hadn’t got it all, she told us. The cancer cells extended to the edge of what she had cut out. “Which means,” she said, “it has the ability to spread.”  

     I was sent down to the freezing basement, where I shivered in a heated blanket and contemplated cancer cells marching in formation with their nasty little battle flag in front. A lanky black man shivered in his blanket down the hallway. We were waiting for our turn with a PET scanning machine, too far apart for conversation, but close enough for in-this-both-together glances. PET stands for positron emission tomography, something I learned later from the internet. The machine is large. They make you lie down on a table with your hands above your head and slide you into it. You must keep absolutely still. It heaves and groans and twists above you like a lover who has lost his way. You think of pleasant things to pass the time. And everyone is nice.

     Back I went upstairs where Joe waited with a salad from the cafeteria. What, no tomato? No tomato. I picked at it, waiting to be called back in to see the doctor, exchanging sympathetic glances with my friend from down below who had no lunch and no one to sit beside him.

     I am not sure what the PET scan accomplished, but Dr. T assured me that anal cells are very susceptible to chemo-radiation, they will flee at its bad breath. She said this sort of cancer has a very high cure rate. Almost a hundred percent, she said, which left me wondering about the almost bit. I was to come back Monday to see the chemotherapy doctor, and one week later the radiation doctor.

     “So,” I said on the way home, “it seems I have bum cancer.”

     Joe said nothing, wisely.

So here came Monday again, and Joe and I were back at the hospital, me already starting to feel as though I lived there. This time it was Dr. U, my new medical oncologist, which means she’s the chemotherapy lady. She’s another of the nice Duke people and told us cheerfully I’d have an IV in my arm for the next six weeks, with a tube attached going through a vein to just above my heart. To the tube would be attached a plastic pack of something vulgar sounding, 5-FU, the chemotherapy solution.

     In between the 5-FU and me, the tube would run through a pump to regulate the flow. Chemo pack and chemo pump would be enclosed in a specially designed fanny pack to be carried day and night for the entire six weeks. Some women, she said, sling a purse over their shoulder and hide it in their purse. One of her patients, she said, made a special trip to New York and bought an entire range of different purses for this very purpose. I presumed this not to be a recommendation.

     It was up to Dr. U’s physician’s assistant to tell us about side effects. Her name was Margot and she was as nice as anyone could pray to be. There’ll be some short-term side effects,” she said. “And long. Not everybody gets them all,” from which I gathered there must be a lot.

     She started out on nausea and vomiting.

     “I do not want to know,” I said. “I’m a very suggestible person. You tell me what I’m going to get and I will get it sure as day.”

     So I was sent uninformed out of the room while Joe was briefed on how to deal with whatever it was I might get, and which prescription, of which there seemed to be too many for one person, to be used for each. I figured if I did not know I would need none of them, that this business of effects could be obviated by sweet ignorance.

     The fanny pack with all its apparatus was surprisingly heavy. It had an alarm system that went off in the night anytime I trapped the tube carrying the chemo underneath my body. I had not been warned of this and the first time it happened I fell into a panic. Joe was still half asleep and we could not for the life of us figure how to turn it off. Meanwhile, I was sure I was either overdosing and would shortly die, or underdosing, and the sudden shock would kill me. Eventually Joe called the emergency number on the machine and––where do they get them all?––a nice man led him through the what-to-do. After a few nights we were experts.

       Then it was time to see the radiologist. This was quite an entertainment. You go in there stripped below the waist and they have this wooden frame into which they pour a couple of big jugs of something dark gray and glutinous. Then they encase the whole thing in a plastic sack and make you lie in it. The glutinous stuff moulds itself to the shape of your body and hardens. This is to keep you in the same position every time you come for radiation. You don’t notice the effects at first, but after a while your backside starts to burn. Before long the insides of my buttocks were completely black, as though I’d been cooked over an open fire by cannibals. My hair dried out, my skin dried out, I drank and drank, and got dryer and dryer and weaker and weaker.

     Joe’s voice: “Here’s your chicken broth. Sorry to wake you, but I’ve got a meeting to go to.”

     I say feebly, “Joe, I’m dying.”

     He sets the broth down on the bedside table. “Here, sit up and drink this.”

     The broth is warm. I sip it through a straw. Joe sits beside me on the bed. “You’re not going to die.”

     “I think I might.”

     He grins. “Can I have your room?”

     This is family joke from when one child or another, in the high drama of adolescence, threatened to leave home.

     Joe takes the empty cup. He produces water and my bomb of a pain killer. He kisses me. I am alone. For a minute and a half I contemplate the dreadful dullness of a funeral. Then the bomb explodes and I am gone.


I did not die. I guess you’ve realized that by now. Recovering from anal cancer was not quite so horrible as having it. The worst of it was the question of whether I would be able to control my bowels. Dr. T assured me I had a strong anal muscle, but at first the evidence of that was not entirely clear.

     It was humiliating, the sudden sliding sensation, the trails left behind en route to the bathroom, the soiled underwear and sheets. Joe followed me as patiently as any nurse, gathering up my lost insides, bundling sheets and towels and underwear and nightgowns into the washer, the constant churning in the laundry room reminding me of what could happen any time.

     I say this was the worst, and in a sense it was, but actually the pain was worse. Imagine a large, unhealed wound just inside your anus. Imagine your bowels heaving. Imagine the pulling and the tearing at the wound. I’ve been stuck on the pot a few times in my life, but this . . . this was sweet agony. Either my bowels flooded, or anticipation of the pain froze the muscles tight. I had never cried out in pain in all my life before, not even giving birth, but this struggle between the body’s fear and its compulsion to get rid of waste undid me. I was not part of it. I was merely its announcer. I howled the news.

     Gradually the news became less of civil war and more of reconstruction. I was able to walk very slowly halfway to the corner of our street, and then right to the corner, then to the entrance of the trail where I had walked so freely once upon a time. Each day I crept a little further and each day held my bowels until I got back home. Once I had to flee ignominiously into the woods, but only once. Gradually my strength came back.

     And then Joe went off to China for a year to teach at Fudan University in Shanghai. “Come with me,” he insisted. “You can write a book.”

     “Yeah, sure,” I said, “and then get disappeared.”

     He laughed. “Just don’t get crosswise with the government.”

     “You go. You’ll love it. You’ve got lots of friends in China.”

     “But I want you to come too.”

     “My work is here.”

     “You can carry your work anywhere.”

     “I’m afraid to leave my doctors.” As I said it I knew that it was true.

     And Joe did too. He said, “I’m staying.”

     And so the debate went back and forth, and back and forth, and back and forth. But eventually I convinced him he should go, he absolutely should go. “Go,” I said. “Go on. I’ll come and visit.”

     And so he went. And do you know what? It forced me to complete recovery. By the time he left I was in good shape except for a frozen shoulder where the chemo had got to me, and frozen vaginal muscles where the radiation had. Three visits to a physio and the shoulder was unfrozen, I could swim backstroke again. The vaginal muscles were another thing, but I was determined to unfreeze them by the time I went to China.

     Did you know there are people who specialize in vaginal physiotherapy? It’s quite magical. I’d explain in detail but that might be TMI, so I’ll just tell you that I went to visit Joe in frozen and unbreathable Shanghai and after a couple of days sent an email to my physio congratulating her on her success, to which she replied, “Wonderful! Go for it!”

       Which I proceeded to do.