It hadnt occurred to me that he might say yes. We were sitting in the den at 7:30 am. She told me she had gained back the twenty pounds shed lost after the last chemo but she couldnt have weighed a hundred pounds now. KELLY: Well, it's really, really true, so it was a pleasure to get to say it to you instead of just pining to my book club about how I wish you had another book coming out. . Im good. I had thought this was a story about Tom Hanks, the friendly actor-writer who had recorded my book, but I was mistaken. She wasnt just her illness. Do you even realize your life isnt normal? Niki said when I announced my trip. We took turns cooking or cooked together. There was no more walking to a class in the dark of morningeverything was closedand so I asked her if she wanted to exercise with me. As I was agreeing, there she was again. It had zero spiritual component. Love became Much love. Its like a Nol Coward play but not as witty. She was Tom Hankss assistant and there was work to do. And I had never done anything like that before. When it becomes difficult for Sooki to find a hospital to deliver the clinical trial and chemo she needs, Patchett and VanDevender discover that it can be done at the hospital in their home town, Nashville. In a previous interview with SurvivorNet, Caleb Farley talked about his mothers battle with breast cancer and how heopted out of his position as a cornerbackfor the Virginia Tech Hokies due to COVID-19 concerns. When she gave us the painting she had done of Sparky on the back of the couch, I felt as if Matisse had painted our dog.. Wed been introduced when I arrived but I didnt remember her name. She apologized for her late response, saying that shed had a medical procedure and hadnt been in the office. Treatments were on Wednesdaysthree Wednesdays on, one Wednesday offwith immunotherapy (the trial) every other week. She had transferred her life into brushwork, impossible colors overlapping, the composition precariously and perfectly balanced. Patchett is so 100 percent a writer that you get the feeling that her life doesnt happen unless she writes about it. Karl is not waiting on a thank-you note, I promise. Every morning before breakfast, we waved our hands in the air. The three of us were standing, back of the theater in the dark. How Much Is A Raphael Painting Worth? We have come to the point in this story when time changes. Ive heard writers say that they write in order to discover how the story ends, and if they knew the ending in advance there wouldnt be any point in writing. In case you havent read it, Uncommon Type is a very good book. I dont know why I didnt have the sense to worry, but I didnt. He describes her as "someone who is all that is good in the world." A neighbor of Patchett's described Sooki as a saint. You think youre getting chemo three Wednesdays a month but really its a test to measure the effectiveness of kundalini yoga and kohlrabi. I had signed up for a farm-share box, and every week we were overwhelmed with pounds of mysterious vegetables. She was the New York City Bat Lady at 21. When Im putting together a novel, I leave all the doors and windows open so the characters can come in and just as easily leave. I can motivate myself without a deadline or a contract. A month later, I still hadnt seen all the clothes she had brought with her, and I never saw the cold caps. It looks like a little purse on a long strap?, I asked her if she could have left it on the plane, but no, of course not. I asked Sooki if she had any interest in trying psilocybin. (It was not reassuring to know that one of the nurses at UCLA thought that Sloan Kettering was the name of the doctor Id be seeing.) Then came the moment one feels on a roller coaster just as the bar locks into place and the car starts to pull up, the body pressing back into the seat, knees out ahead, and you think, Wait a minute, was this the best. Sooki had strength and courage. Sookis mother lived two miles from the Westchester airport. I made it a point not to tell Karl sad medical stories at the end of his long days of sad medical stories. My husband, Ken, will come down for at least part of the time, once Ive started chemo, and I may have other visitors, so I think I will explore some other options in the area, but I cant tell you how touched I am that youve extended the offer. KELLY: My conversation this past fall with author Ann Patchett about her latest book "These Precious Days. I was packing boxes, writing cards, and making cheerful videos in which I extolled the virtues of the books I loved. We lived in that good world made up of yoga and chemo, the bookstore, cooking, painting, talking over dinner. There was never so much color, spinning, building, reconfiguring, splitting apart. By the time the playlist had reached Tristan and Isolde, my skull was a horses skull, dry and white and empty. Sooki and I shined our flashlights on the smooth bark of the trees that lay across the streets. For what? he asked. KELLY: Wow. Ive got to take care of my nun, I told him. Shed gone to an Indian restaurant and bought bread stuffed with apricots and dates. Curiosity is the rock upon which fiction is built. Never want to see this again? College was meant to be rigorous, and so she signed up for animal behavior instead. Small, flat islands of boiled wool were resolutely attached to her scalp by the 2percent of hair that had not fallen out. The risk was too high. The title piece in the autobiographical essay collection These Precious Days by Ann Patchett is about her unexpected friendship with Tom Hanks's personal assistant, Sooki Raphael, who ended up living with Patchett and her husband in Nashville while enrolled in a medical trial for pancreatic cancer. Everyone could bring his or her own sandwich and stay safely apart. Back before she came, when she was still insisting on finding a hotel, I asked her if we could talk for just a minute on the phone. Even in this first picture, a self portrait of her while undergoing chemo during Covid she still painted. More breath. Shed scarcely left the house for more than three months and yet it was impossible to push the world back into the Mary Poppins suitcase. Learn more about SurvivorNet's rigorous medical review process. Shes Now Memorialized in Author Ann Patchetts Latest Book; Moving Forward after the Loss of a Loved One to Cancer, Raphael first met Patchett backstage at an event with Hanks in 2017. I had set my intention going in: I wanted to help my friend. 2023 USA TODAY, a division of Gannett Satellite Information Network, LLC. She kept saying she wanted to be the one to help me for a change. Ann Patchett and Tom Hanks' assistant? He was in Nashville. I tried to imagine chemo while living in a hotel. Out on the tarmac, I could see her again exactly as she was, resplendent in her velvet coat, her black beret. Hell make sure you get everything you need. I looked up every anomaly online, settling on too much black tea, or maybe the wrong color shoes. But after years of infections, she decided to remove her implants and go flat. Her artwork reflects a deeply personal exploration of body image and sexuality. Three time cancer survivor, MariannaCuozzo, talks to SurvivorNet about how art helps her express herself. That didnt work. To the best of my knowledge, she never quit. I went to Virginia to see my friend Rene Fleming in concert. But a few months later, I got an email from Tom Hanks early in the morning. And it was working for Hanks that led Raphael to Patchett who would later become an invaluable friend to Raphael during her cancer treatment and artistic journey. The last few months, the oncologists were watching the numbers and Western medicine offered nothing to do but to wait and see where the cancer showed up. Not a guru. That shed always been so careful not to cross any lines, not to advance herself through connections shed made through him. He was to play Elviss manager, Colonel Tom Parker. I think I know what Im doing when in truth I have no idea. You all did a book event. When Patchett connected with Tom Hanks, who is a fellow author and book lover (among other things! This is what I need, she said, excited. He responded: mar. I sent her books on color theory. Just think, I would say to her on Wednesdays. She was indefatigably pleasant and warm while maintaining her distance. I guess you never know if youre the person whos going to look good bald until youre bald.. She's allowed to live in the world, and not be one thing. What could have been a disastrous time becomes, for both of them, a cherished opportunity. I think about you often and hope for the best. I was taking in every precious day. I dont take notes. I was overcome by a sense of order in the world: if I hadnt picked up that book, if I hadnt gone to D.C., if we hadnt stayed in just enough contact for her to tell me a year after the fact that she had cancer, and if I hadnt mentioned it to Karl, she wouldnt have found her way to the only clinical trial in the country that both matched her cancer and could take her immediately. I thought about how extraordinarily famous you would have to be to have someone like that working as your assistant. Copyright 2022 NPR. "Primarily and in her soul she was an artist." We just kept sitting there in the stillness, the kind of dark that electricity wants us to forget ever existed. Seventy percent of participants rated it among the most personally meaningful and spiritually significant experiences of their lives. He rolled his eyes, but he kept reading. NPR's Mary Louise Kelly speaks with author Ann Patchett about her latest collection of essays, These Precious Days, and how she ended up quarantining with Tom Hanks' personal assistant. Everything was tremendously present tense for Sooki. Called These Precious Days(Harper, 320 pp., out of four, out Tuesday) after a line from the pop standard September Song, memorably recorded by another Nashville legend, Willie Nelson, the essay lends its melancholy title to a new collection of essays by one of Americas premier writers. As the co-owner of a bookstore, I do this sort of thing, and while I mostly do it in Nashville, where I live, there have certainly been requests interesting enough to get me on a plane. And which, despite several cringe-worthy passages, it is a moving and memorable account of a brief but incandescent friendship. Im going to have to have my hair cut, she said. And I'm always taken aback because it feels a little like asking a parent, who's your favorite child? I didnt say, This thing you live with every minute, this heaving horses skull, I held it for you today so that you could talk it out with the people who love you. She was an artist. A forest sprung up in the middle of the street. He recommends books and asks for recommendations. All across the country clinical trials were being postponed or abandoned in an attempt to deal with the overflow of patients being treated for COVID-19. Entire countries have lost their distinctive smell, The Wests industrial-sized chicken farms could be as dangerous as any wet market. We miss you. Yeah. I finally asked her to write down the phone numbers of her husband and son and daughter, telling her that if she got sick, if she were in the hospital unexpectedly, Id need to know how to get a hold of them. Now that things were going right I felt the jolt of just exactly how wrong they could have been. In a previous interview with SurvivorNet, Cuozzo tells us how she found comfort expressing herself through her work. There arent a lot of boundaries. The thought of Tom Hanks benefiting from my assistance struck me as funny, and then I forgot about it. Never. Sooki worried about her mother, who had been admitted to a hospital near Rye Brook for a urinary tract infection. They would stop each way to refuel in West Virginia. Shes Catholic. How could I not have known? What about your sisters? I asked. It turned out that Tom and Rita came to town something less than regularly but more than I would have thought. I hear you, and I know that if I were in your shoes and you were asking me to stay with you it would seem impossible. Then Sooki and I went to the kitchen, mixed our pre-measured packets of mushroom powder in with yogurt, and poisoned ourselves. I pulled up my eye mask. We said our goodbyes and Adrian and I walked downtown to see what had happened. Gingerly we picked our way forward. Still, she said, I cant help feeling like I should have done more with my life.. The day I picked up Sooki from the airport in February she told me she would need to buy dry ice for Wednesdays. You always feel this way on Friday., Thats what Im here for, I said. The paintings were bold, confident, at ease. Hows the painting going? Catalpa flowers littered the sidewalk, though I hadnt realized the catalpa trees were in bloom. . In the twenty-six years that Karl and I had been together, Id never had the experience of coming home to dinner being made. But it turned out to be a good job, and Tom was a nice guy, and the travel was interesting. She would pour color into my inbox for a while and then be gone again. There are people here all the time. The trip came together quickly. There she was in the doorway, outlined in neon tubing. She told me how lovely it had been to lay down the burden of her own vigilance. She and Ken put what mattered most in the car and started driving, waiting to see which way the wind would shift the wall of flame. I crawled around her as carefully as I could and collapsed in the hallway. Germline variants are passed from parents to their children, and are associated with increased risks of several cancer types, including pancreatic, ovarian and breast cancers. Did you have a hard time?. Ill send photos from San Diego. I felt like someone was slamming me against a wall, not in anger but as a job. And we were. The tumor in her liver was shrinking. So every time I am writing a novel, once I get about a third of the way into it and I really know what I'm doing and I love my characters, I start to think, well, what happens if I get hit by a car? Asked to endorse Hankss short story collection,Uncommon Type, and then to interview him on stage during his tour, Patchett first meets Sooki in the wings of a Washington theater. In her last two and a half years, Sooki started painting. There was an abstract image, and it was clearly younot in a physical way, but as a soul. If youre concerned about pancreatic cancer in your family, start by talking to a genetic counselor to learn more about your risk and what options you have, Everett said. Sitting there in her shaggy pink rock-star coat, Sooki told me how much shed come to hate the cold. What had been a theorySooki should come to Nashville for her chemowas now a fact. It has to do with fearing death. A new collection of essays by Ann Patchett, one of America's premier writers, tells a moving account of a brief but incandescent friendship. Its an honor, really. Marriage also meant that I would listen if he tried to talk me out of it. The bookstore was closed to the public, but we were still shipping orders. I went to sleep with my husband. PATCHETT: I really, really appreciate that. Hey, how are you? Of course we would exercise together; it was good for both of us. So this is so crazy when I think about it - those dark ages before cellphones and the internet. I dont want you to feel like you have to stay downstairs, I said. I lit the candles on the table and served the cauliflower cake and tomato soup Id made that afternoon. But all Sooki did was help me. Sooki had gone to work for the New York City Department of Healths Bureau of Animal Affairs right out of college. They sailed to St.Barts in a beautiful old wooden boat named Christmas. may 31, 2020: I had the most unusual dream last night. Ours was an ephemeral connection common to the modern world, writes Patchett. I tried it but it didnt work. Raphael had a long career in the film industry before indulging her passion for painting. They were lucky and the fire skated past. Everything looks so logical going backwardYes, of course, thats what we didbut going forward its something else entirely. So happy to be the connector of good things. We would meet on the level playing field of affectionate strangers. Whether you loved it or hated it may depend on your feelings about celebrity culture since the benevolent presence of Hanks and his wife, Rita Wilson, hovers in the background. I told her to take her time settling in. When I was very nearly at the end, I came to a beautiful lake, the kind youd see on a Japanese postcard, or my imagined picture of a Japanese postcard. I cant thank her enough for how she raised me and because it was her who gave me all of that, um, spiritually, she, she just filled my heart with love and joy. Only on weekdays and not on the Fourth of July, because apparently cancer knows to take weekends off and observe federal holidays. By the time we sat down it was over. When the event was over and more pictures had been taken and everyone had said how much theyd enjoyed absolutely everything, Tom Hanks and his assistant and I found ourselves alone again, standing at the end of a long cement hallway by a stage door, saying good night and goodbye. Happy to help. I took her to the J.M.W.Turner exhibition at the art museum. How had I not asked her all these things before? Her love and passion and beauty will continue to live in her paintings, and in all of us who were privileged to have entered her world. The story has started without my realizing it. Subscribe to the World edition here. We climbed over branches, met an impasse, turned to walk another way. We hope you enjoy reading another article this month! That I would like to meet her in the way I had wanted to meet my pen pals as a child? Karl can pull up and youll run in. Id come up with the answer months ago. She doesnt have to go to India. Sooki agrees to stay for a few nights. And it's such a funny thing. Just remember, Wednesday chemo left you very sad on Friday and Saturday, so it stands to reason that Thursday chemo will break your heart on Saturday and Sunday. Would you feel better about it if I did it with you?, She looked at me. When we turned out the light that night I felt myself buzzing with happiness: After nearly three months of lockdown, we were going to have an adventure. Lucy said she didnt have time for this. Id written a childrens book and was about to go on tour. Use this bar to access information about the steps in your cancer journey. Sparky had crawled onto my chest and gone to sleep. What Sooki thought she should have done with her life was paint. Maybe it had something to do with her job. 30, 2019: My kindness comes from sincerely wanting this recording to happen. I like myself here, she said softly. All the messages were about Tom and Rita. Come on, Sooki, he said, his voice gone grand. I could see Ken and how hes always been there for me, how he steps back to let me shine. I just would worry too much about being a bad friend. In fact we were so exactly in the middle of history that we had no way of understanding what we were seeing. Like a Cessna? She made props for TV shows. The months shed lost not being in chemo while they struggled to locate the new tumor had put her perilously behind. Ive never experienced anything like it, or you. Im dying, my friend had said to me. RoseGallery is pleased to present These Precious Days, a solo exhibition of paintings by Sooki Raphael, on view from 10 April until 10 May, 2021. Creating art, among other things, can be a cathartic process for people undergoing cancer treatments. I am doing my best to keep it pushed off to the side, but I was diagnosed with pancreatic cancer in November (caught it early) so Ive been dealing with surgeries and chemo. She has children. I wouldnt be on the same floor of the house.. I feel like I could pop into Trader Joes and have them replaced with those happy little stickers they hand out to well-behaved childrenit undermines my confidence in the sophisticated nature of the whole process just a bit. I laughed. We talked about what we were reading and what we wanted to accomplish that day. And you will be surprised by how comforting it is to be very sick with an actual doctor upstairs. Precision seemed like a good decision here. She agreed to stay for a few nights, but after that she said she would rent a car and find a hotel. We were loaded with plans in those days. If it werent for me, youd be walking around with a penguin on your head right now.. There was a little kitchen in the dorm, and I got a book, and I made Thanksgiving dinner. The ones who stayed turned out to be the ones I was interested in. On this summer night in 2017, I picked up a collection called Uncommon Type, by Tom Hanks. She produced a film about her fathers work teaching children with special needs. Doug Wendt also lost a loved one to cancer. A post shared by Sooki Raphael (@sookiraphaelartist), What came out of her brush was a feast of colors and stories that she had kept in her heart for years, feelings that were just waiting to explode, the post read. Tom Hanks and Rita Wilson lost their friend Sooki Raphael to pancreatic cancer earlier this year. Tell us. Her father was in the hospital and she had driven down from Kentucky to take care of him. As the warning sirens kicked in at four in the morning, only Sooki was awake. She became interested in urban animals. The main character I was certain of starts to drift, and someone Id barely noticed moves in to fill the space. The four frozen caps were to be stored in a cooler filled with fifty pounds of dry ice. Sooki and I needed the same thing: to find someone who could see us as our best and most complete selves, writes Patchett. But have you seen my phone? ), she developed a deep and lasting friendship with his assistant, Sooki. How much is the Raphael worth? Up and down the street the lights clicked off; our house went dark. In bed the night before, I asked Karl, How do you think this is going?, He put down his crossword puzzle. lives. I studied what did not come naturally, she told me. First the tornadoes, Sooki said, taking picture after picture, the giant root systems pulling up slabs of earth taller than Karl, the bright spring grass meeting the sidewalk at right angles. It was enough just to be together in all that darkness. It was just the three of us now, Sooki and Karl and me. She had her surgery at Duke and survived. Im sure these words cant adequately convey what was such a radiant message, but it stayed with me so strongly as I woke up during the night, and thats the best I can describe it. By the time I was done signing books that night, the event I had scheduled in New York the next day had been canceled. I would be gone for the night, and once I got back my friend Emma Straub was coming to visit. You can be certain that she loves the job. I had breakfast with my editor and agent and publicist, and when we were finished they each decided not to go back to the office after all. At the country club in Connecticut, the event organizers began to apologize as soon as we were through the door. Not to advance your cancer treatment? Then, we ended up staying in touch very lightly - you know, an email every month or two. I made a documentary about my father. I am a huge fan of your work (and Toms, of course) and it just thrills me that you are collaborating on this! I really could call once, and I wanted to call her after dinner. It's clear this was hard to write about when you turned to actually try to capture Sooki in an essay. Id seen her work in action. It would be a nightmare.. Now I knew several people who were using them as part of therapy. But of course the thing to do would be to go, wouldnt it? Are you breathing? How it happened is told in the title story of These Precious Days, Patchett's second collection of essays. Over dinner was agreeing, there she was the New York City of! About to go, wouldnt it walked downtown to see what had happened infections, she said would... Only Sooki was awake her latest book `` These Precious Days feel like you to! Unless she writes about it - those dark ages before cellphones and internet. Like you have to be rigorous, and I had been together, Id never had the most dream! 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