Praying For Radiation
ASHLEY MAKAR • June 30th 2014
Leaving the house this morning was like running late for a train when you don’t know how long you’ll be away. I packed my over-the-shoulder travel bag—a cross between a duffle and a purse, the kind that can hold everything you may need when you don’t know what the day will hold. Today I’ll get the results of my latest CT scan.
Waiting to get my blood drawn at Yale-New Haven Hospital, I fumble around in my bag for a pen and my “Decomposition” brand notebook of grid-ruled paper. The same compartment holds an issue of The Newtowner I tossed in for a magical realist story on whales I want to read again. There’s some change and a Charlie card left over from the trip to Boston in a mesh pouch where I used to keep a St. Peregrine medal — until I gave it to my boyfriend at the time. His mother S. was going into hospice; the tumor in her pancreas had invaded her ovaries. It was on that trip to Boston that I discovered there’s a patron saint of cancer patients. Wandering around the Prudential Center, a whirl of kiosks and eateries, I stumbled into a Catholic chapel. I lit a candle and prayed, for my grandmother unhinged with dementia, for Sudan on the verge of civil war again. On the way out, I stopped by the gift shop where I browsed through the precious-medal pendants of saints. There were the usual holy suspects: Mary, St. Jude, Thérèse of Lisieux — and one I didn’t recognize. A man called Peregrine, “the Wonder-worker,” said the prayer card attached to the medal. He endured his own suffering—incurable cancer—with patience and fortitude. He prayed fervently for healing and received it instantly one night. He continued his life of holiness, interceding with all the more zeal for those afflicted with life-threatening illnesses. I bought a St. Peregrine medal to help me pray for S. She’d been in complete remission—scans showed her body to be cancer-free—for three years after chemo. But the tumors were raring again, spreading with a fury. When I got back to the Y where I was staying in Back Bay, I googled St. Peregrine. Afflicted with a cancerous growth below his knee, he was waiting to have his leg amputated. The night before the surgery, while he was praying for healing, he received a vision—Christ coming down from the cross to touch his wound. Peregrine was healed completely. I found a prayer to St. Peregrine for sick friends and relatives. “Oh, Great St. Peregrine,” I read aloud. “For so many years you bore in your own flesh this cancerous disease that destroys the very fiber of our being, and [you] had recourse to the source of all grace when the power of man could do no more.” S.’s cancer was resisting the treatment regimen recommended by some of the best oncologists in the country. “Ask of God and Our Lady the cure of these sick persons whom we entrust to you.” I prayed, half believing in a miracle for S. I prayed, not knowing that I, too, have incurable cancer — not knowing that a mass was forming in my esophagus; malignant cells were multiplying fast and moving through my lymphatic system, saturating my liver with metastases.
The CT scan will show whether the current chemo regimen is controlling the tumor activity in a lymph node behind my stomach. Today, my oncologist will decide if I should have another infusion of Oxaliplatin—a chemo drug that knocks me out of commission for a week after each treatment—or if I’ll move on to radiation. I’m praying for radiation. Since being diagnosed with Stage IV cancer, my prayers have become increasingly clinical. I have trouble praying for healing for myself because I don’t believe a miracle cure will happen, so I pray for the best-case scenario. Today, I’m praying for radiation. Maybe it won’t make me as sick as chemo. Maybe it will keep the cancer at bay for a while. In the Smilow Cancer Center waiting room, I pull up a picture of St. Peregrine on my phone. He’s sticking his right leg out of a robe, as if to show off the gruesome cancerous growth that overtook his knee. (Osteosarcoma?) I laugh at the disparity between Peregrine’s bloody knee and the feel-good things adorning the oncology waiting room: bright flyers for a watercolor class, a Landscapes of America calendar, a poster for a “Closer to Free” bike ride. There’s a self-published pamphlet by a survivor called My Cancer Journey, a euphemism I’ve grown to hate. Maybe that survivor has moved on from the chemo infusion chair to the cliffs of Kilimanjaro, but my cancer is keeping me from all the travels on my bucket list: visiting the rock-hewn monasteries of Ethiopia, walking the Comino de Santiago, swimming with whales off the coast of Fiji. Smilow offers a consolation prize, a visual analgesic: a tropical fish tank in every waiting room as if fins of iridescent blue could mesmerize you into forgetting why you’re here, or into losing track of all the time you have to spend on cancer. I watch how the Sunset Wrasse, an elusive blurt of orange, moves through the water frenetically, darting around like I do when I feel well enough. After I recover from each round of chemo, I go into hyper-drive, as if to pack all my active life in to the two weeks before I have to go down again. Today, I don’t know if I’ll have to go down for a chemo-fatigued week or if I’ll be free to dart around.
Why is Peregrine’s namesake the Latin root for travel, wander, migrate? Maybe incurable cancer is a way of journeying: a treacherous adventure whose itinerary is always subject to change. You can’t plan much with cancer. You cross off things on your to-do list—not because you’ve accomplished the task, but because you can’t when cancer trumps the not-cancer things you need or want to do. Even the cancer to-dos can become moot at the drop of a clinical hat; maybe you don’t need to refill that prescription for the drug that’s been keeping you alive for the last six months. Maybe it’s not working anymore. You surrender maps and guidebooks and let go of destinations. Cancer kills, but it’s wildly unpredictable in the meantime. I’m living in limbo, waiting to know what the next several months of my life might look like. Here, I begin a novena, a nine-day prayer, a pilgrimage of sorts, to St. Peregrine.
In the Smilow waiting room, I go to praymorenovenas.com and click on Peregrine. I ask my friend Bri to pray with me. We say, “Dear holy servant of God, St. Peregrine, we pray today for healing. Intercede for us! God healed you of cancer and others were healed by your prayers. Please pray for the physical healing of…” I hesitate when I get to the part where the prayer tells you (mention your intentions). I’m used to saying others’ names; I don’t know how to pray for healing for myself. But my friend is here; I’ve asked her to pray and so I say along with her, “Please pray for the physical healing of Ashley Makar…” A nurse interrupts us, calling me back to an examination room. An awkward oncology fellow presses on my abdomen and asks if there’s any tenderness or pain. No, I tell him, anxious to see my real doctor, Dr. L. who will tell me if I have to stay for chemo, or if I’ll get a “break”: a month-long spate of radiation. She walks in and gives me a mixed bag of news: the CT scan results are good in that the lesions on my liver are stable (oncology speak for no growth or spread), but the lymph node has gotten larger. The chemo isn’t working at that site. She recommends that I start radiation as soon as possible, to buy me some time until I can get into a clinical trial for a biological therapy that would help my immune system fight the cancer. “I’d bet the bank on this for you,” she says. There’s a guy with gastric cancer who’s doing great on this trial. “He’s young like you.” Dr. L. tells me she’ll try to find me a spot in the immunotherapy trial in the Northeast Corridor. I tell her I’ll go anywhere, anytime. I got what I was praying for: radiation. But I thought that moving on to radiation would mean that the chemo had shrunk the lymph node enough that it could be spot-treated.. You can’t expect anything on your “cancer journey.”
I cannot take the strangeness of saying my name alone at the (mention your intentions) part, so I add others: my mother, who’s suffering from a spinal chord injury; my friend who’s having hernia surgery; a friend’s dad who has lung cancer. These intentions bring us to our knees seeking your intercession for healing. I remember a prayer I learned from a group of Southern Sudanese nuns I met at a displaced persons camp between Juba and their hometown Bor. Thiec Nhiliac, Dinka for “Kneel and ask God.” I kneel and ask St. Peregrine, as the novena guides you for day two, Pray for us, that we might persevere in hope. The Southern Sudanese refugees who have welcomed me into their stories have shown me what it is to persevere in hope. They know better than I ever can what it is to be vulnerable to circumstances beyond your control, to live with frustrated desires, to have your heart broken over and over again, to endure awful disappointments after high expectations: cease fires that do not hold, rainy seasons that bring more disease than grain. When I talked to my friend Lazarus, who lost his mother and two uncles in the latest massacre in South Sudan, he said, “It is a disaster, really. But we have hope.” I asked how. He said, “We have no choice.”
I light a votive candle on my writing desk. I mouth the beginning of the novena, so as not to disturb the silence of the morning. It goes faster when you don’t say it aloud, and the faster you mention your intentions, the faster you get to the special prayer prescribed for the day. Pray for us, that we will have the courage to offer up our suffering in unity with the Cross. This is the hardest one for me so far. I consecrate my pain to God, but I don’t see my cancer “journey” as a way of the cross. I am not suffering a thimble as much as anyone who’s been crucified, much less Jesus. And if given the choice, I’ll take the path of least affliction.
I add to my list of intentions. I pray for the mental healing of a friend who’s done time in solitary confinement, who’s been hospitalized on lock-down for psychosis again. It’s as if St. Peregrine, or whoever wrote the novena, anticipated my intention for today: Pray for us, that the loneliness of our suffering will be consoled.
I’m in a good mood about moving from infusions to radiation and I’m excited to mine the metaphors. While I was being infused with chemo toxins, I had to learn to let people help me, to ask for help, to receive the love of friends who treat me like family. How has their love transformed me? Do I have more light inside? Will I radiate love? I kneel in suspense for what St. Peregrine has for me today. I read Pray for us, that the fear of death will be replaced with the hope of everlasting life. I’m a little disappointed. I’m not afraid of death, and I believe in eternal life. Maybe I’ve been taking heaven for granted, like sunlight. Maybe radiation will be like sitting outside on a bright day, feeling the sun warming your forearms. Maybe I’ll see, as if for the first time, the shadow of my pen on a sunlit page. Maybe I’ll start writing unabashedly about the afterlife.
I come to Smilow for a radiation simulation, the first step in radiation therapy. I check in for my appointment not knowing what to expect. When the nurse calls me, she leads me to a room where she asks me to remove my clothes from the waist up and put on a hospital gown. Then she brings me to a CT-scan machine and directs me to lie on the stretcher. When it’s time for the scan I raise my arms over my head—I know the drill by now. But they usually let me keep on a camisole. This time, when the gown comes down, I’m half naked, in front of two male techs. To diffuse the awkwardness, I chat about the barium I had to drink—how gross it tastes first thing in the morning. After the scan, the nurse tells me one of the techs is going to give me tattoos—little marks on my torso so the radiation therapists know where to direct the beams. “It’s permanent. Is that ok?” she asks. As long as it doesn’t hurt like real tattoo, I tell her. “We just call them tattoos,” says a beautiful South Asian man with a Rhode-Island accent. “Are you ok with needles?” I tell him yes. “It will just be a little prick, and I’ll inject the ink,” he assures me. Finally, someone who bothers to tell me what to expect. “Have you ever thought about getting a tattoo?” he asks. Maybe he’s trying to diffuse the awkwardness, too; I’m still having to lay there topless with my arms over my head. “No. I can’t think of anything I love enough to go through the pain of getting a tattoo. What about you?” “I wanted to,” he tells me, as if some fatal flaw were keeping him from his quarter-life dreams. “But I don’t like needles.” “What would you want to get?” “A quote in Sanskrit,” he tells me. “What does it say?” I ask with more excitement than when I’m about to discover the St. Peregrine prayer of the day. I fantasize: Maybe it’s a quote from Gitanjali, the “song-offerings” of my favorite Indian poet, Rabindranath Tagore, the line I can’t quite remember about the trees as earth’s endless something of the sheltering heaven. “It’s something like ‘never give up’,” he tells me. After the poetic let-down of the hot radiation “tattoo” artist’s Sanskrit quote of choice, I kneel in the hospital’s interfaith chapel, all but saying aloud “Ok, St. P, what’ve you got for me today?” I read Pray for us, that our suffering will not rob us of joy. Head and shoulders better than “never give up.” There’s a coda to the daily prayers that holds the novena together with a wisdom that re-enchants Catholic theologies of healing for me: A life of holiness like yours is more important than a life free of suffering and disease. Pray for our healing, but pray even more that we might come as close to Our Lord as you are.
I’m running late for a yoga class, so I rush past a could-be homeless man I usually stop and talk to. He’s a gentle schizophrenic who tells the few who stop and listen the thoughts the birds bring him on a given day. Today, I pretend I don’t know him and hope he doesn’t recognize me. I don’t have the patience to wait for him to get the thoughts out today. Two blocks away, I talk myself down from guilt with some defense of self-care. I’m in a rush to get to The Breathing Room yoga studio, the one place that stills the frenetic fish I become post-chemo fatigue, the one place I can move through postures that make me feel like my body hasn’t betrayed me. Once I take care of myself, I can stop and listen to beautiful delusions on the street. I try to make myself feel better with something I learned from my favorite yoga teacher: metta meditation, a Buddhist practice of cultivating loving-kindness, starting with you. Send loving thoughts to yourself; then you extend that loving-kindness outward—first to a friend, then to those who are outside your family or social circle. Today, I don’t even make the time to sit still and send loving-kindness out to the man I willfully ignored on the street. I tell myself I don’t have time for a metta meditation and a novena. But Peregrine doesn’t let me off the hook. The day-seven prayer won’t let me get too comfortable with self-care: Pray for us, that in our pain we will not become selfish but ever more selfless.
I’m back at my writing desk, scribbling in my journal about my ambivalence over praying for physical healing for myself. I’m both betraying and living up to my roots. Growing up in Alabama, my grandmother took me to the Sipsey Church of God where I heard the quickening power of the Holy Ghost, a fierce language to pray by in every distress: Lord, help; we know that You are able. But my parents—a hot-shot cardiologist and a top-notch radiologic technologist—raised me on the language of Western medicine. Terms like diagnosis, pathology, prognosis mingled in my young psyche with the Word of the Lord: Hezekiah “sick unto death” until he turned his face to the wall and prayed; the Lord restored him for 15 years. I’ll turn my face to the wall; I’ll kneel and ask God to heal me, but I haven’t been able to ask wholeheartedly. I don’t believe God will restore me completely. I’ve read the studies that predict a five-year survival rate for people with my type of cancer. Maybe I’ll beat the odds, but if I do, it will be God working through a medical breakthrough. Through my dad’s work as a cardiologist, I heard about many sick-unto-death lives saved. The interventions he made with the miracles of modern medicine: putting in stints to let blood flow around blocked arteries; implanting pacemakers to regulate atrial fibrillation; shocking hearts that had stopped, back to beating life. Peregrine offers a prayer on faith for me today: Pray for us, that this sickness will teach me to depend more and more on God. I try to pray this wholeheartedly; I try to want to be utterly dependent on God. The prayer doesn’t bring me to my knees. But I kneel and ask God, anyway.
I’m in a rush again. This time to catch a train to New York to see a Dr. S., a world-renowned oncologist whose got his finger on the pulse of clinical trials all over the country. Here I go, wondering if I’m really willing to go anywhere, anytime. I say the last novena prayer while waiting on the platform for the 5:25 Metro North train to Grand Central. I lay down my grid-ruled notebook on the concrete to protect my knees and kneel, half hoping someone notices: a disheveled girl praying in strange, quiet ways, and asking God—for what? I don’t know. I mention my intentions (an unwieldy litany of names) quickly, to see what Peregrine has for me: Pray for us, that our lives will glorify God alone. I talk back: Why should the goal of our lives be to glorify? And why God alone? On the train I start re-reading that Newtowner story on whales.1 A girl named Claudia feels a quivering in her wrist while she’s trying to sketch an aloe plant during a high-school art class. At home, Claudia sits in front of the last canvas her mother painted before dying in childbirth: The sun is a small, blue disc. Fish as big as cattle roam the streets. I fall asleep before I get to the part about the whales.
1 “The Drowning,” by Lisa Levy, from the Spring 2011 issue of The Newtowner.
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Ashley Makar is the Community Liaison for IRIS–Integrated Refugee & Immigrant Services, in New Haven, CT. She’s a contributing editor to Killing the Buddha, an online magazine for people made anxious by churches.