fillise

Shelli, Your dad and I share a birthday so in his honor I will offer up a "happy birthday" to him and a ((((hug)))) for you. Susan

Thanks Randy. Another life taken far too soon. Another reason to stand up to this disease now. Susan

Christy, I am so sorry to read this. Your mom was a special woman who was lucky to have a daughter who loved her so much. Susan

I was just on the su2c website and I couldn't gind where the money will be donated. I want to support, but I want to make sure LC research does not get shortchanged like it does everywhere else. I saw something in my email recently about lungevity and su2c, but accidently deleted it (apparently) before I read it. Can anyone tell me about the connection? Have we started a team? If not, I will be happy to start one. Susan

Connie--I saw it too and you summed it up pretty well. It was in preparation for the big Cancer benefit on Friday night. Susan

We miss you Carole!

I am so sorry. You have mt deepest condolences. Susan

Ree, I will be thinking about you during the coming week. Your mom is in my prayers. Susan

Hi, My mom also has stage IV NSCLC with mets to the spine at diagnosis. She received her radiation treatments first to control the pain and then they did her chemo. She was then stable for a full year in which she took no treatments. In May she started experiencing back pain again (she also has arthritis in her back so some back pain was a constant issue, but this got worse). A bone scan revealed that her spine mets were on the move and up and down her spine and in her ribs, hips and pelvis. She received more radiation (two doses over about a five week period). Then she took a quadramet treatment to relieve the bone pain. Her pain is a lot better now, but the side effects from these treatments were harder on her than during the first round of treatment and she is just now starting to feel good and get some energy back. Mom also experienced swelling in her abdomin which the radiologist thinks was coming from her spine. The swelling is now subsiding. There is a limit to how much radiation they can do. Mom also gets a Zometa infusiion once a month to help strengthen her bones. These are all things you can ask your radiologist about, but radiation usually does being about significant pain relief. If you have any more questions, just ask. Susan

Thinking of you today. . . Susan

Caren, You sound exactly like I did when my mom was first diagnosed. It was shock and sadness. I didn't think it was depression, but rather profound sadness with a touch of fear. It was overwhelming and it took awhile to adjust to the "new normal." I still have boughts with it, but now 20 months into our journey I try to be aware that every day I can call and talk to my mom and every trip I can make to see her is a precious gift and a reason to smile. But I have to be honest that the sadness still comes upon me and it took me a good six months to really be able to breathe out and relax a bit. Susan

Thinking about you Nick! Susan

Marci, Others may be knowlegable about this than I, but I think the two doublets each produce similar results. My mom did the Carbo/Taxol and lost her hair--which was the hardest part of the whole chemo experience for her. The physical side effects were not nearly as bad as the phschological shock of looking into the mirror each day. If they have similar outcomes, I'd say choosing the option that allows your mom to keep her hair is as good a reason for that choice as any other. Susan

Ree, I am keeping you and your mom in my prayers. I'm also sending you a hug to lift you up. ((((Ree)))) Love, Susan

Tarek, Please accept my deepest condolences. I am grateful you were able to be with your father for his last days and were able to attend his funeral. I will keep you in my prayers. Susan

Janette, I'm so sorry. I will keep you and your family in my prayers. Susan

Yeah--as copensation your hair should come back thick and full--and any color you want it to! Susan

Leroy's blog was a source of daily inspiration for me as well. I shall miss his insights, his honesty and the courage with which he fought his cancer. Susan

I don't know if any of you have been following Leroy's blog on NPR, but this has been a daily source of solace, information and laughter to me over the past 19 months. Remembrances Journalist, 'My Cancer' Blogger Leroy Sievers Dies by Shomial Ahmad NPR.org, August 16, 2008 · Journalist Leroy Sievers, who covered wars, genocides and natural disasters in more than a dozen countries — and who chronicled life after his cancer diagnosis for NPR on-air and online — died Friday. He was 53. For 14 years, Sievers worked at ABC News' Nightline, spending his last four years with the program as its executive producer. Earlier, he worked for nearly 10 years at CBS News. A graduate of the University of California at Berkeley, he began his career at KTVU-TV in Oakland, Calif. In more than 25 years as a working journalist, Sievers covered conflicts in Iraq, Rwanda, Somalia, Kosovo, El Salvador and Nicaragua, among other countries. During the 2003 invasion of Iraq, he was embedded with the 3rd Infantry Division alongside Nightline anchor Ted Koppel. And it was Sievers who was responsible for "The Fallen," Nightline's 2004 tribute to those who died in the ongoing Iraq war. After leaving Nightline, Sievers became a guest lecturer at the University of Southern California's Annenberg School for Communication, and he returned to Africa for Human Rights Watch and the International Crisis Group. For the Discovery Channel, again working with Koppel, he produced Our Children's Children's War, a special report on the long-term implications of the war on terrorism. In his quarter-century career, Sievers won 12 national news Emmys, two George Foster Peabody Awards and two Alfred I. DuPont-Columbia University Awards. A Diagnosis, And A Decision Sievers was first treated for colon cancer in 2001. Four years later, the cancer returned, this time in his brain and lung. Doctors told him he probably had less than six months to live. Instead, for 2 1/2 years, he was able to treat the cancer with surgery, chemotherapy and radiation. As he began chemotherapy treatments, Sievers detailed his experiences on NPR's Morning Edition, in a commentary that aired Feb. 16, 2006. Ellen McDonnell, NPR's morning-programming director, recalls listening to that first commentary, and she remembers how the rawness and transparency of Sievers' words struck a chord with listeners — those battling cancer, and others as well. Several months after the first commentary came a second, and then a regular series chronicling Sievers' life in what he called "Cancer World." Eventually, under the title "My Cancer," the project would become a multimedia conversation that included a daily blog, a weekly podcast and — most important to Sievers — a community. "Leroy gave voice to a topic that we are very uncomfortable with — death and dying," McDonnell said. "My Cancer had a face and a heart and a smile." In his radio essays, in his podcast commentaries and on the blog, Sievers addressed the polite silences that surround cancer. He described his early internal debates about whether it was worth it to buy new pants and shoes. He spoke frankly about his hope that he would live long enough to read the final installment in the Harry Potter series. (He did, reporting avidly on the 759-page volume in a blog post written late at night, immediately after he finished the book.) In the summer of 2008, a week before his 53rd birthday, Sievers learned that the cancer he had kept at bay for so long had "exploded" throughout his body. His doctors told him that they had run out of treatment options. Courage To Face Horrors, And An Appetite For Small Joys A towering man at 6 foot 5, Sievers once wrote that he wasn't "particularly graceful." Yet there was a grace in the frankness with which he observed the world. In 1994, in the final days of the Rwandan genocide, Sievers traveled with a Nightline crew to the sprawling, cholera-plagued refugee camps on Rwanda's border. There were no roads, no paths — just tens of thousands of people, barely living and already dead, lying "head to toe in a lava field," as Sievers wrote in an article for the Los Angeles Times Magazine. As he and his crew picked their way through, he felt a movement at his feet. "I looked down and saw a small boy," Sievers wrote. "He looked to be about 5, which meant he was probably 10. Malnutrition will do that." "He was lying on his back and had thrown his arm up over his head. His fingers had gotten tangled in my boot laces. As I looked in his eyes, I saw the light go out. And he died. A stranger's face, my face, was the last thing he saw. And all I could do was shake my foot to free my laces from his fingers, and then move on to catch up to my team. It was five years before I could tell that story." Like many who have become intimately familiar with death, Sievers learned how to appreciate the fleeting pleasures of life. At his home in the Washington, D.C., suburbs, he hosted an annual Halloween party, where one year he greeted guests dressed as another tall Washingtonian: Janet Reno. He indulged his cravings. He liked to drink an entire gallon of ice-cold skim milk each day. He loved jalapeno peppers and iced mochas. In one blog post, "Little Things That Turn the Day Around," he posed a revealing rhetorical question: "What isn't better with melted cheese on it?" Richard L. Harris, NPR's afternoon-programming director and another Nightline veteran, remembers Sievers as a man with a deep baritone laugh and a sense of humor that helped him navigate life's most challenging moments — a man who approached his work with courage and a disarming honesty. "While his craft was to illustrate television stories with the right picture, his gift was using words to touch people," Harris said. "He did everything with passion." As Nightline's executive producer, Harris recalled, Sievers "would eloquently tell the subscribers to the daily Nightline e-mail why the broadcast on that particular night mattered." With its tens of thousands of subscribers, that daily e-mail was in some ways a blog before blogs became a fixture on the Web. Sievers wrote in a conversational tone, often revealing how each night's broadcast came together. At one point in late 2000, the subscriber list was growing by 1,800 per week. Why Blog? Because 'No One Walks This Road Alone' In May 2007, Ted Koppel hosted a three-hour, prime-time Discovery Channel documentary, Living with Cancer, in which he interviewed his friend and longtime colleague. In interviews before the documentary aired, many reporters asked Sievers variations on one basic question: "What do you get out of writing the blog?" He concluded one My Cancer post with an answer: "A daily reminder that none of us walks this road alone. What could be better than that?" Sievers blogged about his cancer almost every day. Even on days that he could "forget" about the disease, he argued, it was important that he share his reflections for the many readers who didn't have such a momentary reprieve. In an interview on NPR, Elizabeth Edwards, the lawyer wife of former Sen. John Edwards and herself a cancer patient, described what she called Sievers' gift. "[it's] not just that he gives people an opportunity to open up — and they do, so many of them do on his blog — but that he is the voice for people," Edwards said. "That sometimes they feel they don't need to speak; that he's speaking the words that they're feeling." And as the blog became a virtual meeting place, with readers responding to Sievers and to each others' stories, it grew into a community. Mary, a mother of three facing the "daily reminders" of baldness and a chemotherapy port, said she made a morning ritual of reading the blog over a strong cup of coffee. Another reader, Connie, wrote that the blog helped her understand the experiences of her 46-year-old brother, who had the same type of cancer Sievers did. Lawyer and syndicated columnist Susan Estrich read Sievers' blog religiously and once wrote that he left her "between laughter and tears" — not with a profound thought, or a moving description of fortitude, but with his wrath about the thinly padded, "ridiculously uncomfortable" hospital tables to which patients get strapped for everything from radiation to MRIs. Andy Carvin, NPR's senior social-media strategist, defines a "truly great blog" as a place where a community forms, and where members find themselves almost compelled to join the conversation. Carvin, himself the son of two cancer survivors, found himself reading Sievers' blog almost every day. "NPR and Leroy launched My Cancer, but it's evolved into Our Cancer," Carvin said. "It's a place where patients, cancer survivors and their friends and families can have a safe and trusted place where they get support and gain strength from each other." In addition to the close-knit My Cancer community, Sievers is survived by his wife, television producer Laurie Singer. He lost his 83-year-old mother, June Sievers, in March — to the same type of cancer he himself had developed. On her passing, Sievers wrote a post he titled "Cancer Takes Another Life." He remembered his mother's love of spicy food, and of driving on the open road. He ended that post with words as transparent and simple as the ones that began the My Cancer journey: "I will miss her." http://www.npr.org/templates/story/stor ... 1001#share

I hope he can start putting it on too. Susan

Lisa, I'm so sorry. ((((Lisa)))) Susan

I am so sorry. I will be keeping you in my thoughts and prayers. Susan

I'm so sorry Lisa. This damn disease is just so evil. Susan

Christine, I am so sorry to read this news. Your mom was an amazing woman. Thank you for letting us know. We are here for you if you need us. Susan

It has noe been almost three weeks since mom had her Quadramet treatment. Her pain level is better, but she is very tired. So tired that I called her oncologist on Monday and they told her to come in. Quadramet works in the bone so one of the side effects is low blood counts. They monitor blood counts for 8 weeks. It apparently takes about 4 weeks for them to reach the nadir (bottom) and so that seems to be what is tiring mom out. The doc said it is likely to get worse before it gets better and her blood counts are still going down. They are not in dangerous levels, but it is enough to make her feel tired and washed out. The good news is that she reports that her pain has been reduced quite a bit, which was the point of the treatment. Because the tumer in her lung is still stable the onc is going to try to hold off on chemo until after the first of the year. Susan