The grass was still brown and only a handful of the thousands of bulbs had opened. It isnt that.. You all did a book event. Later that day we sat side by side on our yoga mats, Sookis head wrapped artfully in a scarf. What could have been a disastrous time becomes, for both of them, a cherished opportunity. And who wouldnt be given the fact that Raphael didnt really emerge as an artist until her pancreatic cancer diagnosis in November 2018. We still had customers even if they couldnt come into the store, and they were fantastically loyal. Up and down the street the lights clicked off; our house went dark. She even dedicated the front cover of her new book to Raphaels lovely painting of her dog. She made the time, stitching days together. More breath. Our hearts have been filled with the comfort his films have given us, and that, coupled with the fact that hes a nice man, made it easy to line up a group of booksellers who were eager to pitch in. ), she developed a deep and lasting friendship with his assistant, Sooki. Once she gets here and sees the way things are, shell be fine.. Will time be linear or can it stutter and skip? Then she went downstairs and went back to sleep. Copyright 2023 SurvivorNet, Inc. All Rights Reserved. Most of the writers and artists I know were made for sheltering in place. It has been an exercise in creative storytelling to try to think up more and more reasons why the number might rise while the scans (CTs! What Sooki thought she should have done with her life was paint. People are not composed entirely of their facts, after all. It was a minor footnote considering everything I got from Karl, but still, the warmth of it, the love: to walk in the door after a long two days and see that someone had imagined that I might be hungry knocked me sideways. There was no hesitation on the canvases, no timidity. PATCHETT: It really is. I thought I was helping and now I wonder if Ive made it worse.. Theres usually a guy working the light board and the mics who talks to me for a minute, though tonight the guy talking was Tom Hanks. It has to do with fearing death. And which, despite several cringe-worthy passages, it is a moving and memorable account of a brief but incandescent friendship. Sooki had two young grandchildren in San Diego and made plans to bring them to an event I was doing there, but they didnt show. Sooki Raphael leaves her canvas as colorful as she has led her life. I was happy, even thrilled, to stop traveling. He wanted to know why I hadnt told him this. My husband, Karl, and I sat in a dressing room with them for an hour and a half between sets. Are you breathing? Sparky had crawled onto my chest and gone to sleep. Are you not sorry you did it? I felt like it took me two minutes to put that much together. Its like a Nol Coward play but not as witty. 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. I had interviews scheduled all day on Tuesday, Sooki had chemo on Wednesday, and my friends were leaving for California on Thursday. Would it even work? Sooki didnt talk about her husband or her children or her friends or her employer; she talked about color. The thought of Tom Hanks benefiting from my assistance struck me as funny, and then I forgot about it. The phone hadnt been run over, nothing in the wallet was missing. Below is my story. I keep throwing things out. She was there and then she was gone and we wouldnt see her again until the next morning. Afterward we sat up at the hotel and talked about this new coronavirus and whether the rest of her tour would be canceled. I was trying to read her lips. Much love. Her kids were in school by then. As we worked our way through trying to get contracts signed and making arrangements with the audio producer, our emails became an affectionate exchange. And the trial at UCLA was canceled because that's what COVID did. Karl spent a huge amount of time studying weather as part of his instrument-rating prep. Lucy said she didnt have time for this. And even when youre in the middle of it you can still get up and go to the bathroom. More:Amazon releases its best books of 2021 list: 'An embarrassment of riches'. And I found maybe five other kids who had done the same thing and decided that I was going to make Thanksgiving dinner. The bottom floor of the house is an apartment, separate entrance, no kitchen. Shed fallen down some stairs outside of church the night before and twisted her foot and now that foot was swollen and sore. I have to feel like Im contributing. Creating art, among other things, can be a cathartic process for people undergoing cancer treatments. Sooki Raphael is an artist. 17, 2019: Hey! 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. She was thrilled to get the chance to work. Because I was trying to protect myself. Forget about the heartfelt letters. I had never found a way of asking what having cancer had been like for her, or what it meant to so vigorously refuse the hand you were dealt. I find a stream and follow it, the stream dries up, and Im left to look for moss on the sides of trees. KELLY: The title essay, "These Precious Days," is about a remarkable friendship that you formed with the personal assistant of Tom Hanks, who - long story short - you got to know. I need to go home, she would say, like home was another place she could walk to. (He also flies a Cessna plane, which comes in handy when Sookis mother is taken into hospital in New York.) I now knew that shed had a Whipple at Duke and twelve rounds of FOLFIRINOX followed by twenty-eight days of radiation over five and a half weeks at UCLA. Death was there during those long, sunny days. feb. 7, 2020: When last we typed you were on your way to Stanford for a second opinion. But I think Ann is the saint in the story. And also, she was very low on white blood cells. As lockdown continues, the two women practice kundalini yoga and meditation twice a day. On this summer night in 2017, I picked up a collection called Uncommon Type, by Tom Hanks. Sooki let my friends with the plane know that she would be there on Thursday. And this led to you meeting Sooki. Ann. One thing led to another chief among them, finding out about Raphaels illness and soon, the movie stars longtime assistant had moved into her house. And despite the fact that cancer has essentially been her whole life, Cuozzo has recognized herself as a lot more than a diagnosis by focusing on her life as a mother and an artist. Jennie and I walked our dogs together after dinner, and Sooki came with us most nights, unless she had a phone call to return, unless she wasnt feeling up to it. I was also greatly occupied by the bookstore. It was shallow, but perfect, and the early morning, Sea stones with holes in them have long been regarded as magical talismans, carried for protection, or safe passage. In a previous interview with SurvivorNet,Dr. Anirban Maitra, the co-leader of the Pancreatic Cancer Moon Shot at MD Anderson Cancer Center, explains what he typically sees when patients develop this disease. We both agreed that if this was the brink of extinction, it was nice to be together. Their close friendship began through email, and would eventually lead to Patchett offering her home to Raphael in early 2020 so she could receive cancer treatment in Nashville. Shed only been here for a couple of hours. Register, Tom Hanks and Rita Wilsons Friend and Assistant Dies from Pancreatic Cancer; See Their Heartfelt Tribute to the Artist, Julia Louis-Dreyfus Teases Her Upcoming Movie With A Star-Studded Cast, Actress & Fitness Guru Jane Fonda, 85, Says 'Chemo Hit Me Hard'-- Fighting Lymphoma Years After Breast Cancer, Rock Band Kiss Co-Founder Peter Criss, 77, Male Breast Cancer Survivor, Releases New Version Of Classic 'Dirty Livin'', You Can Now Buy Top Gun Star's Val Kilmer's Personally Crafted Scrapbooks For Sale, His 'Most Private And Intimate Work To Date', For Healthy Skin Month, Take Advice From Ariana Madix, a Melanoma Survivor, and Speak Up About Concerns, Transthyretin Amyloid Cardiomyopathy (ATTR-CM), Entranced by her velvet coat and kind demeanor, In a recent post made to her official Instagram. That woman was author Ann Patchett whom she first met backstage at an event with Hanks in 2017. Or I would have forgotten about it, except that I got a call from Tom Hankss publicist a few weeks later, asking whether I would fly to Washington in October to interview the actor onstage as part of his book tour. Shed been a location scout, made wedding cakes, started a childrens clothing company, taught ceramics. The paintings came from a landscape of dreams, pattern on pattern, impossible colors leaning into one another. Id seen her work in action. Ive never experienced anything like it, or you. She could be a nun. Sister Nena picked up a piece of bread and swiped it through the olive oil in the saucer between us. I cant sleep through it.. Karl said she should send him her records if she wanted to, and that he would talk to Johanna Bendell, an oncologist at the hospital where he works. That had been one of her greatest fears about coming to stay with us in the first place, that she would be unable to take care of herself, that she would be a burden, that she would embarrass herself. The press release is about to go out. I sat there and watched her read, waiting for something more, something that explained it. One of the last things I understand when Im putting a novel together is the structure of time. Two words I kept trying to bring up as I convulsed on the bathroom floor. Ann Patchett and Tom Hanks' assistant? All that breathing and twisting and flexing fed her, and the calm voice of the instructor seemed to be speaking directly to her. ANN PATCHETT: Aw, Mary Louise. Pancreatic cancer is an aggressive disease that is difficult to detect because symptoms including jaundice and weight loss typically present at a later stage in the cancers development. The spring was cold and wet and endlessly beautiful because of it. The rain went on for another half an hour, and when it gave up I put Sparky on his leash and the three of us went outside to wander and gape with our neighbors. Sooki Raphael leaves her canvas as colorful as she has led her life. It turned out to be more or less the truth. I just would worry too much about being a bad friend. There she was in the passenger seat, a shy person with a quiet voice. She brought her paintings upstairs to show us: a person who was too shy to say good night most nights was happy for us to see her work. By the time Sunday came the urgency would have passed. It's by Ann Patchett. And this is how Sooki became part of something bigger than herself, pure art destined to express the beauty and mystery of the world that she could see more than most of us can. A similar medical trial would begin months earlier in Nashville. I had met Sooki, after all. The paintings were bold, confident, at ease. There was never so much color, spinning, building, reconfiguring, splitting apart. I had no idea whether it was a good idea, but she could. Ann had only briefly met Sooki Raphael, Tom Hanks' personal assistant for over two decades, at an author event, but after learning Sooki was in treatment for advanced pancreatic cancer and hoping to be included in a proposed Los Angeles clinical trial, the author devised a plan. Are you serious? The four frozen caps were to be stored in a cooler filled with fifty pounds of dry ice. Perhaps you, too, received a link to a 20,000-word story in Harpers last January by the bestselling novelist and Nashville, Tennessee, bookseller Ann Patchett. My death. She could work for Mother Teresa. Did Tom even know that Sooki and I were friends? She couldnt be alone. It took a while to get the mushrooms. Can empty houses help solve homelessness? It was just that we had piled up so much junk to keep from hearing it. Im afraid if I leave Ill never see you again, she said in a voice I could barely hear. My cancer markerCA 19-9is nonspecific to pancreatic cancer (it can indicate other inflammation in the body), but its an indicator and is supposed to be at 35 U/L or less. There was an important piece of information that hadnt been made clear to Sooki when she came to Nashville; it was that, unlike the FOLFIRINOX, which had carved twenty pounds off her over twenty-four weeks, this course of chemotherapy had no end. Sooki was married? She took off her cap to show me the damage. The fact that the two of you want me here, that you love me, that you believe in meit makes me believe in myself. I had spent my professional life looking at my calendar, counting down the days I had left at home. There arent a lot of boundaries. Our writers hold no party line; their only allegiance is to clarity of thought, elegance of expression and independence of opinion. 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. Its not like youre stuck in one place. I would have given her a hug but for the pandemic. NPR transcripts are created on a rush deadline by an NPR contractor. Later in the summer there was radiation, just to be safe. Emma and I would be speaking at a librarians convention downtown. I sent more books: books Id written, books I thought shed like, Kate DiCamillo books to be read with her grandchildren. Everything filled in. So there she was, stuck with us. It has to be one of the most extraordinary stories of lockdown how Tom Hankss assistant Sooki Raphael, undergoing treatment for recurrent pancreatic cancer, came to be living in the basement of the novelist Ann Patchett and her husband Dr Karl VanDevender. She was the bat squad. A post shared by Rita Wilson (@ritawilson), [Sooki] was so many things, Wilson wrote. I studied what did not come naturally, she told me. Having lost his mom to breast cancer in 2018, he knew he wanted to be extra careful during the pandemic. Where I was going was death. Or I should say the boundaries you think are there tend to fall away. She looked like a tiny rock star in her shaggy pale-pink coat and sunglasses and high boots. I would leave again on Sunday for Virginia. My reading on this flight is a book called Radical Remission. They were lucky and the fire skated past. A month later, I still hadnt seen all the clothes she had brought with her, and I never saw the cold caps. apr. Surely there were sadder things, but none of them came to mind. It had been happening for a while. Come naturally, she said in a dressing room with them for an and! Process for people undergoing cancer treatments downstairs and went back to sleep had customers even if couldnt. 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