He told SurvivorNet that after losing his wife, Alice, to a two-year battle with ovarian cancer, hell never really get over losing her, but he does hope to move forward. I told her to take her time settling in. We would have dinner whenever she was ready. I wasnt suffering the crashing waves of anxiety that battered down so many people I knewthough two hours of daily yoga and meditation also contributed to keeping panic at bay. He said that Sooki was good when they left. When was she first diagnosed with pancreatic cancer? Sooki thought about it, or she thought about having to tell me. I tilt toward the overly familiar. He's really interesting. The phone sat beside her on the table quietlythe prodigal returnedwhile we asked the kind of questions people ask on first dates: Do you have siblings? Susan Joan "Sooki" Raphael of Topanga, CA passed peacefully on April 25th surrounded by friends, family, color, light, joy, and love. . Emma and I would be speaking at a librarians convention downtown. She and Tom would walk in the desert in the early mornings and she would feed him lines from a script while he memorized his part, cobras skating through the dust just in front of them. 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. We looked in the car. You all did a book event. The months shed lost not being in chemo while they struggled to locate the new tumor had put her perilously behind. In Memoriam. The house smelled of chickpea stew and rice when I came in the door that night. She helps the poor like Dorothy Day.. It was just the three of us now, Sooki and Karl and me. Writers who do readings at the bookstore are often stashed in the guest room. It was our place, what Sister Nena called vacation. She ordered the house merlot and I had a seltzer with cranberry juice. 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. I would save what I could save, and, along with my business partner, Karen Hayes, and a small, ferocious staff (including my sister Heather) who never backed down, I was determined to save the bookstore. That was how I saw the coronavirusas something that could kill Sooki. Sooki said shed heard about it, too, and knew other cancer patients whod tried it, but she was hesitant, as any right-minded adult would be hesitant about adding the X factor of fungi into an already complicated chemical mix. It had been languishing in a pile by the dresser for a while, and Id left it there because of an unarticulated belief that actors should stick to acting. 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. You should come back to the music, she said sympathetically. Paintings by Sooki Raphael. I could see what they needed and what theyd given me. I could have forgotten Sooki altogether in that moment, because even though I followed her story with interest, it was one of many stories. Twenty-two sessions down and six to go. Who is tom Hanks assistant? Maybe its the trial, she said, but I think it could just as easily be the food and the yoga.. There was no money or freedom or wherewithal to buy another ticket and see him sooner. The days went on and I could feel Sooki slipping, hounded by her own indecision. Theres a grain of truth in, Short term rentals have become a source of income for some property owners in the Santa Monica Mountains and a source of aggravation for others,, Theres a special place just a few miles up the coast, where whales, dolphins, and sea lions swim close to shore, where you can watch. The paintings were bold, confident, at ease. Karls cousin was visiting from New Mexico, sleeping in the other guest room. I was struck by an overwhelming sense of wanting to know her, of not wanting to miss Sooki while she was here. He recommends books and asks for recommendations. Every day Sooki came upstairs looking spectacularembroidered jeans, velvet tops, a different coat, a perfect scarf. About a quarter of the trees were down. The same trial she was part of in Nashville had finally commenced at UCLA, twenty minutes from her house. She ran marathons and regularly won the Fastest Woman in Topanga title at the local Tough Topanga 10k. Her Sookis cookies recipe was famous among not just anyone who knew her, but anyone who knew someone who knew her. There are days of the distant past that remain so vivid to me that I could walk back into them and pick up the conversation mid-sentence, while there are other days (weeks, months, people, places) I couldnt recall to save my life. If she really wanted to go to India and she wanted to serve the poor, thats what she would do.. This was eight hours of hard labor. And I keep talking to Sooki, and I just think, this is the most interesting person I've met in I don't know when, which is odd because, of course, I'm also meeting Tom Hanks for the first time PATCHETT: You know, who's terrific, right? 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. We played Scrabble and did our yoga from memory after Karl went to bed. The wind was coming down the street like a train. I guess you never know if youre the person whos going to look good bald until youre bald.. Patchett writes. Sooki Raphael, Mesa Tree, Topanga, from 'Vivid Series' 16 x 20 inches. And the only time I ever feel paranoid about death is when I'm in the middle of a novel because I don't want the novel to die. In a recent post made to her official Instagram, the caption echoed this sentiment of Raphael sharing her unique perspective of the world through her art. We found a diner down the street from where I would be speaking. The grass was still brown and only a handful of the thousands of bulbs had opened. The reports were overwhelmingly positive: Psilocybin produces substantial and sustained decreases in depression and anxiety in patients with life-threatening cancer. When it was over, I managed to make my way into the shower, perhaps the biggest single accomplishment of my life. It would be another year before I saw my father again, an unimaginable unit of time in the life of a child. This was what we did at the end of the day. People die of this.. I made a documentary about my father. ", (SOUNDBITE OF STATIK SELEKTAH SONG, "TIME"). I had thought I was writing a novel about a woman who had left her family to go serve the poor in India. How thrilled they would have been to have even a few of the hours she wasted with us. She shook her head. We shined them into the beds of purple iris that stood tall and straight, untouched. She started a kids clothing business. I went upstairs to get the scissors out of my sewing basket. Its not like youre stuck in one place. I would have given her a hug but for the pandemic. There had been a meeting of some sort. Ours was an ephemeral connection common to the modern world, writes Patchett. And it's so unexpected to come across a friendship like that at this point in life. Her sisters were in, her mother was thrilled. These days were concentrated like no time I had ever known. Marriage meant that he would hear out what on the surface may have appeared to be a spectacularly stupid idea. It's an unforgettable story. What do your children do? Did you have a hard time?. She met Sooki Raphael,. Id spent two hours on a stage talking to Tom Hanks, and now I wanted to talk to Sooki. Karl looked up the name for it on his phone. Jessica Everett, a genetic counselorat Perlmutter Cancer CentersPancreatic Cancer Centerat NYU Langone, encourages people in this category to look into possible screening options. I asked her. People were dancing, laughing, and so she went outside. I didnt need to hear about the first opinion to know what that meant. PATCHETT: So I first met Sooki Raphael backstage when I was interviewing Tom for his collection of short stories. Derecho. It was possible, and I had no intention of thinking about it. It turned out that Tom and Rita came to town something less than regularly but more than I would have thought. Karl and Sooki came in the back door together in the middle of a conversation. Yeah. Except it was Sooki, and I liked her very much. "Let's go back to the hotel. I asked her about her trip to Stanford for the biopsy, her flight to Nashville. But I didnt forget. 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. Most recently, she had a solo exhibition of paintings at ROSEGALLERY called These Precious Days, just like Patchetts piece. Nothing. Karl, being Karl, took the officer around the corner to explain the situation. Germline mutations in ATM, BRCA1, BRCA2, CKDN2A, PALB2, PRSS1, STK11 and TP53 are associated with increased risk of pancreatic cancer. We were ready. There was a bottle of water, a blue glass by the sink. She told me how lovely it had been to lay down the burden of her own vigilance. But wasnt there also a scenario in which she didnt die? The treatments left her tired, but she was managing. I was no longer sick or well. There was work to do. And that was so sweet, but what it meant was I couldn't go home for Thanksgiving. While I was in Virginia, a series of tornadoes hit Nashville. Things can get very confused. A few more pages would send me off to sleep, so I went in search of a short story. She moved to Nashville, Tennessee when she was six, where she continues to live. He walked me through the publishing process: being thrilled by acceptance, ignoring reviews and then having the dream of bestsellerdom dashed What mattered was that you knew how to love the job.. We did this to ourselves, I said, or maybe I didnt say it. We talked about art. How do you fly from Nashville to New York in a single-engine plane for a two-hour visit? I knew there was a part of her that believed that maybe what Nashville had to offer in terms of fighting cancer was happening in our house, that she was improving because she was with us. Wed been introduced when I arrived but I didnt remember her name. We kept a common grocery list on the kitchen counter. I might have made the choice to let it go unmentioned had there been something else to talk about, maybe his mother or my mother or the spigot that had frozen in the garage. I had spent my professional life looking at my calendar, counting down the days I had left at home. And also, she was very low on white blood cells. In her tribute to Raphael, Wilson pointed to her friend as proof that it is never too late to explore your creative passions. But of course I was the one who took everything. Need to create a login? By the time individuals walk into the clinic with symptoms like jaundice, weight loss, back pain or diabetes, its often very late in the stage of the disease., RELATED: Increased Thirst and Dark Urine: Researchers Reveal Two New Signs of Pancreatic Cancer As Cases Increase Over Last 18 Years, Detecting Pancreatic Cancer Early Is Crucial. . Join The Spectator community and view or post a comment on this article. Sooki Raphael is a TH Assistant at Playtone based in Universal City, California. I had cut a small bouquet of Lenten roses and put them on the night table. My friends arrived and we waved at one another from a distance as they gathered Sooki up. Whether she was trying to hold on to her own sense of privacy or what she perceived to be our privacy, I didnt know. I went by myself. Heres how the story came about: Patchett was invited to interview Hanks while he was on a book tour. I didnt say, Your death. It was as if 98percent of her hair had fallen out, but somehow in the process, it had felted. 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. It must have fallen off my shoulder when I got in the car. Sooki was a tiny thing, with thick brown hair and olive skin. I told her, of course, that she would stay with us. She painted her granddaughter striding through a field of her own imagination, she painted herself wearing a mask, she painted me walking down our street with such vividness that I realized I had never seen the street before. Sooki and I stood together in the kitchen, one of us washing the vegetables, the other one chopping, making it up as we went along. She was an artist. I cant just stay here forever.. Can empty houses help solve homelessness? I thought I was helping and now I wonder if Ive made it worse.. I was in deep mourning for the loss of my best friend, and while I was and still am in shock, I could not ask anyone else to write this tribute. When undergoing treatment for cancer, looking inward for inspiration can be a very cathartic journey that helps with recovery. And then pancreatic cancer. We waited. Such a beautiful coat, I said to her. Almost from the moment we finished that first practice, she identified it as part of her recovery, the thing she needed to stay alive. In bed that night, Karl told me about how happy they all were, how kind. And if you decide you want to stay, well, you dont have to give that up either., Sooki the Tireless, Sooki the Indefatigable, looked as if she was about to split apart. Copyright 2022 NPR. Then Sooki and I went to the kitchen, mixed our pre-measured packets of mushroom powder in with yogurt, and poisoned ourselves. We can go up and back the same day.. Three time cancer survivor, MariannaCuozzo, talks to SurvivorNet about how art helps her express herself. As I got ready to send the details of my second opinion, I was already looking to the third opinion and rethinking the story. Our correspondence was less about bookstores and more about books. This chemo wasnt the nightmare FOLFIRINOX had been. Except it was Sooki, and I liked her very much.. 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. Arent we talking about doing this together?, Oh, I said. apr. There was a little kitchen in the dorm, and I got a book, and I made Thanksgiving dinner. But by the time Karl and Sooki left for the airport she was happy. You okay? Sooki asked. She was an expert in dealing with the medical system, after all. 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. I know how to structure my time. It becomes the woods. She painted and slept and did her work; she had her Zoom meetings and her Zoom gatherings with friends. This wasnt the first time Id invited someone we didnt know to live with us. Timeless stories from our 172-year archive handpicked to speak to the news of the day. We love you, Sooki. We saw two movies with my sister. Reading about other peoples hallucinogenic experiences is like listening to other peoples dreams at a dinner party. We would all proceed with our lives except that now we would be together. She was there and then she was gone and we wouldnt see her again until the next morning. It was Memorial Day, after all. 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. They arent hard to come by around here; my office is made up of piles of books, mostly advance-reader copies that have been sent to me in hopes Ill write a quote for the jacket. I lost her for a while, and then she was back again. She could work for Mother Teresa. She was the New York City Bat Lady at 21. Sooki went downstairs to her room. I tried to find a place for this new fact in the equation but all I could come up with was the obviousI didnt know her. "They have it," she said. Now she would go home to her husband, her children, her grandchildren, her friends. Pay attention every minute. We didnt know each other, and for the most part our correspondence had come after this defining fact. She wrote her thesis on bats and rabies. The park was packed this morning. She had transferred her life into brushwork, impossible colors overlapping, the composition precariously and perfectly balanced. People were out with their dogs. Its just. Cuozzo was first diagnosed with Hodgkins lymphoma in 1994 at the age of 28. Sooki and I shined our flashlights on the smooth bark of the trees that lay across the streets. They were talking like old friends. Wait and see. Farleys mother fought two battles with cancer. Blind Boys of Alabama with Special Guest TBA. Most days I went to work at Parnassus for several hours, filling boxes. Sometimes I had to get right in front of her to hear what she was saying. They arent going to give you her wallet, I said. I presented him with the studies from Johns Hopkins. Still, I wanted to double-check. Register, Tom Hanks and Rita Wilsons Assistant Died of Pancreatic Cancer. We looked downstairs and in the kitchen and the den. Wonderful Sooki! Plans were made for Sooki to come to Nashville. Her best friends lost everything in that fire. I miss our emails. We talked and then we didnt. Sooki hadnt lost weight but she was losing her ability to project her voice. He watched as she went through multiple rounds of chemotherapy while still working and taking care of her family. I cant sleep through it.. Now that things were going right I felt the jolt of just exactly how wrong they could have been. Tom Hanks was so completely absent from our conversations that I once asked her if he knew where she was. He uses the library table to spread out his papers. I had thought this was a story about Tom Hanks, the friendly actor-writer who had recorded my book, but I was mistaken. It would be a nightmare.. Her California and Tennessee oncologists had conferred so that she could transfer from one hospital to the other without missing a treatment. Sooki had twice flown down to Mississippi with us to visit Karls ninety-eight-year-old mother. It may resonate. I didnt know you had a husband!! I thought about how extraordinarily famous you would have to be to have someone like that working as your assistant. I knew people in college and graduate school who took mushrooms, and then about thirty years passed before I heard anything about them again. There are people here all the time. Even in this first picture, a self portrait of her while undergoing chemo during Covid she still painted. Everyone could bring his or her own sandwich and stay safely apart. Wednesdays chemo hit Sooki on Friday afternoon. How had I not asked her all these things before? Sookis impending departure touched a memory I made a point of not revisiting: My sister and I flew from Tennessee to Los Angeles for one week every summer to see our father, and on the morning of the day we were going back to Tennessee I would start to cry. . It was so important, she said, her voice pretty much vanishing in her mouth. I could have said I was busy writing a novel, and that would have been both ridiculous and true. The world asks us to engage, and for the most part we can, but given the choice wed rather stay home. When Sooki and Karl got home that night, they were elated. She was painting. And he said, oh, well, ask her if she wants to send me her files. For Patchett its Snoopy: Snoopy taught me that I would be hurt and I would get over it. No empty spiritual space. 2,560 Followers, 85 Following, 25 Posts - See Instagram photos and videos from Sooki Raphael (@sookiraphaelartist) She was welcome. PATCHETT: It was so incredible and joyful to be together and to make that kind of a friendship that you make in college, you know, with your roommate, with this total stranger who you are assigned to live with who then becomes your best friend. Subscribe to the World edition here. The CA 19-9 had gone from 2,100 to 470. She has opinions about my life. Sooki was married? I was going to tell Karl what was happening but he was looking at his own phone. Had we not talked about the part where he stuck around to oversee our health and safety? I should have planned better, she said. She owned beauty because she was beauty, and so she could express it on canvass, or in an email to a friend, or in a prayer to the sun.. I had invited someone I didnt know to live with us for an undetermined length of time, and I was leaving the day after she arrived, leaving it all to Karl. All three of us had lost our fathers, all three of us were close with our mothers. (He also flies a Cessna plane, which comes in handy when Sookis mother is taken into hospital in New York.) . Your nun? he wrote, as opposed to what most people would say, Your nun?. And I roll them all up. I made it a point not to tell Karl sad medical stories at the end of his long days of sad medical stories. It took a while to get the mushrooms. MAILORDER / QUESTIONS: 1.888.266.4370 8:00 AM - 4:00 PM MON-FRI NURSERY PHONE: (510) 215-3301 Our Plants. Probably it was some combination of the two. It turns out that the trial that they were running at the hospital where he worked was exactly the trial she needed. But now she's memorialized in author Ann Patchett's latest book, These Precious Days: Essays, which will be released Nov. 23. Travel while staying at home! A friend who was well versed in the experience brought them over early in the morning on Memorial Day. We took turns cooking or cooked together. We put on the music, the eye masks, covered up. But you write that what you loved was finding someone who sees you as your best and most complete self and that she did that for you, and you think you did that for her. 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. 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. The problem wasnt how the trip would be organized, but what it meantpandemic, cancer, ninety-four. They told me the story later: How after they landed, when they were all standing together on the lawn outside the small airport, a police officer came and told them they had to disperse. KELLY: And the timing of this - she comes to live with you while she's doing the treatment, and this turns out to be the beginning of the pandemic. I didnt worry about her embarrassing herself. And so I just relied on a book to get me through. On the Trail of a Mountain Lion The footprint was in the middle of the trail. They were lucky and the fire skated past. This whole time Ive gotten it wrong. Backstage, she met his beguiling assistant. Spanish for straight, direct. I surely would go ahead with the dates I had scheduled in the States. I understand the impulse but I also think weve transcended it. He wanted to know whether I liked owning a bookstore. Her mother is the novelist Jeanne Ray. She looked at me. She kept to herself, sleeping and painting, trying to wrestle it out. She wasnt about to tell me she looked good, but it was clear what I was talking about. If I knew nothing about Sooki before she arrived, I knew very little more three weeks later when we were spending all of our days together. I caught an early flight home. Susan Joan Sooki Raphael of Topanga, CA passed peacefully on April 25th surrounded by friends, family, color, light, joy, and love. This one is good for your liver. This will help all your internal organs. You are beautiful. She sent updateschapter eight now, chapter twelve. 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Entranced by her velvet coat and kind demeanor, Patchett knew she wanted to be friends with Raphael. Two words I kept trying to bring up as I convulsed on the bathroom floor. Dont worry about it, Tavia said. All this time Id been afraid of prying, only to discover that Sooki was happy to talk, to tell me about the bats, the sailboat to St.Barts, the desert in Tan-Tan, the surgery. I no longer needed the protection. Curiosity is the rock upon which fiction is built. I gained back twenty pounds, and have been back hiking the trails and at work full time. 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. In the titular essay, Patchett reflects on her serendipitous friendship with Sooki Raphael. She apologized for her late response, saying that shed had a medical procedure and hadnt been in the office. aug. 5, 2019: Radiation has become a fascinating routine over the last five weeks. There was a sitting room downstairs, the library, her bedroom and bathroom. At first wed rolled our eyes, but now I was wondering if it would be melodramatic to cancel my April book tour of Australia and New Zealand. It meant she didnt have to sit out chemo for a week. I wrote and she painted and then we made dinner. Ann. Who knew there was so much color? In Patchett's wildest dreams, she likely never saw a friendship blossoming later in life that would lead her to become a safe haven for a woman fighting against cancer. But a few months later, I got an email from Tom Hanks early in the morning. A plane? Rita Wilson recently posted a tribute to her friend, Sooki Raphael, who painted throughout her treatment for pancreatic cancer. Sooki was desperate to be helpful. Are you serious? It has to be one of the most extraordinary stories of lockdown how Tom Hanks's 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. Precision seemed like a good decision here. I sent more books: books Id written, books I thought shed like, Kate DiCamillo books to be read with her grandchildren. We were sitting in the den at 7:30 am. She shook her head, scrolling. I could see her doing it. And if I did have a favorite, I definitely would not admit it publicly. assistant Sooki Raphael. What could have been a disastrous time becomes, for both of them, a cherished opportunity. is an American film and television production company established in 1998 by actor Tom Hanks and . One night after wed finished our yoga and meditation, we were lying on our mats, staring up at the ceiling. Im going to have to have my hair cut, she said. 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. Raphael passed peacefully on April 25. I paid the check. Pay attention, I told myself. I knew that she worried about her ninety-four-year-old mother in Rye Brook, New York, and read to her grandchildren in San Diego over Zoom. Look at what a success this time had been! He thrilled them, buying stacks of books, signing books, posing for pictures, going next door to the Donut Den for an apple fritter. Our newsletter vital information, hope, and healing, delivered weekly. 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. 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