Live Chat with Leroy Sievers
Following Leroy's appearance on Talk of the Nation, he participated in a live chat with members of the My Cancer community. If you click the "Listen" link above, you can hear the audio of the conversation. Meanwhile, here's the archive of the chat room, where participants discussed Leroy's Talk of the Nation appearance and then proposed questions for him.
| A Live Chat with Leroy Sievers | (07/09/2008) Powered by: CoveritLive |
3:01 | Andy Carvin - Welcome to the Leroy Sievers chat, everyone! The show will begin in about 6 minutes, after the headlines. |
3:02 | [Comment From Kate] So is this live yet? |
3:02 | [Comment From Cristina Barthel] I have clicked on the link provided on the blog but do not get the leroy talk I get the morning edition...are we not able to listen to Leroy live on line? |
3:02 | Andy Carvin - Leroy won't be on for a few more mins. |
3:02 | [Comment From Guest] It seems so |
3:02 | Andy Carvin - The first hour is the Talk of the Nation Broadcast, then the livechat w/ Leroy. |
3:03 | Andy Carvin - Are you able to hear the newscast stream? |
3:03 | [Comment From Cristina Barthel] i can hear the moring edition |
3:03 | [Comment From francesca] but will lerou speak during this hour or only at 4 EST ?? I am in Switzerland... 9 pm here |
3:03 | Andy Carvin - Morning Edition was on til a few mins ago. Now it's headlines, then Talk of the Nation at 6 mins past the hour. |
3:04 | [Comment From Chris] A newscast is playing but the intro was from Morning Edition |
3:04 | [Comment From Laura] yes |
3:04 | Andy Carvin - Hopefully it'll switch over at 6 mins after. Hang tight. |
3:04 | [Comment From Cristina Barthel] OH GREAT! |
3:04 | [Comment From Cristina Barthel] Great. Than it should work! Thanks I will keep refreshing. |
3:04 | [Comment From francesca] cant wait |
3:05 | Andy Carvin - yeah, this is all rather fly-by-the-seat-of-our-pants, so we'll see how this works.  |
3:05 | [Comment From francesca] incredible how we all feel that we are about to listen to a good/old friend... |
3:05 | [Comment From Cristina Barthel] lol :) let's hope it does :) |
3:05 | [Comment From Helena] It's working great so far... |
3:05 | [Comment From Laura] i agree |
3:05 | Andy Carvin - fingers crossed |
3:05 | [Comment From Cristina Barthel] Mine too! |
3:05 | [Comment From Helena] And toes :D |
3:05 | Andy Carvin - LOL |
3:06 | [Comment From Gina] When does it start? |
3:06 | Andy Carvin - couple more minutes. I forgot the top of the hour is a little longer. |
3:06 | [Comment From francesca] it is 6 after. .hehehehe |
3:06 | [Comment From Lori Hale] looking forward to this chat and live broadcast. |
3:06 | Andy Carvin - there we go, I hear ted koppel! |
3:07 | Andy Carvin - And look - six minutes. Hah! |
3:07 | [Comment From Gina] I hear it now! Thanks |
3:07 | [Comment From francesca] swiss punctuality |
3:07 | [Comment From Helena] I hear it!!! |
3:07 | [Comment From Cristina Barthel] Awesome! |
3:07 | [Comment From Cristina Barthel] YES!!!! woohooo! |
3:07 | [Comment From Laura] ted is speaking |
3:08 | [Comment From francesca] i think i may cry when I hear him |
3:08 | Andy Carvin - Meanwhile, feel free to pose questions to Leroy starting now; I'll pull them together and pass them along for the 4pm chat. |
3:08 | [Comment From Helena] Let's hear this wonderful "force of nature"!!!! |
3:08 | [Comment From Guest] Yeah... I got it! |
3:09 | [Comment From TRE'] WOW I NEVER KNEW ALL THIS WAS REAL TIME |
3:09 | Andy Carvin - yep, Talk of the Nation is a Live broadcast. |
3:09 | Andy Carvin - Wednesdays we do it from the Newseum here in DC, so there's a live audience of maybe 100 or so people. |
3:10 | [Comment From brian sandro] wow they're lucky |
3:10 | Andy Carvin - If you're ever in DC, you can join us. Free tix at tickets@npr.org |
3:10 | [Comment From TRE'] I LISTEN ALL THE TIME, BUT I NEVER THOUGHT TO PARTICIPATE. |
3:10 | [Comment From AmyJo] Where do you find your strength and overwhelming spirit? |
3:10 | [Comment From Guest] Bless you, Leroy, I admire you greatly. |
3:10 | [Comment From brian sandro] cool, may take you up on that |
3:11 | [Comment From Guest] Is Ted Koppel joking or is he seriously mad? |
3:11 | [Comment From anonymous] I know this doesn't further the current conversation, but Ted. Telling the audience to shut up doesn't become you. |
3:11 | eperal07 - The questions you post here, will be answered by Leroy at 4 PM. After Talk. |
3:11 | [Comment From TRE'] I THOUGHT IT WAS IRREVERENT |
3:11 | Andy Carvin - Leroy and Ted are very old friends, so they have a way of interacting.... |
3:11 | [Comment From Kim] It's nice that Laurie is there too. I hope we will hear from her too. |
3:11 | Andy Carvin - I hope so as well. |
3:12 | [Comment From Krupali Tejura MD] It's so great to hear your voice again Leroy on TOTN... please give my regards to Ted and Elizabeth |
3:12 | [Comment From Jan] Chill, guys. Enjoy the broadcast. |
3:12 | [Comment From Jennifer] Question for Leroy... prior to being diagnosed, had there been anyone in his life that was affected by cancer that may've helped form the strength and attitude towards his experience after being diagnosed? |
3:13 | [Comment From Amy] I am a fairly new caregiver to my husband who has aggressive colon cancer. What do you need most, as a cancer patient, from your caregiver? |
3:13 | Andy Carvin - "You don't look as robust any more." Man, it's hard to hear Ted say that. |
3:13 | [Comment From Guest] Will Living with Cancer ever be shown again? Is there somewhere we can purchase it? |
3:14 | Andy Carvin - Do you mean the Discovery Channel special? |
3:14 | [Comment From Cristina Barthel] Amy to you I can say...SUPPORT, LOVE, AND TO BE THERE NO MATTER WHAT...KEEP THEM UP! |
3:14 | [Comment From Guest] yes |
3:14 | Andy Carvin - Might be for sale on the discovery.com website. |
3:14 | [Comment From Cristina Barthel] i know your quest was for leroy but just a little more iput fro me |
3:14 | [Comment From L:illy] The difference between a threat to your life in a war zone and one from cancer is that with cancer, it's your own body that is doing you in. The enemy is within you. In an external war zone, unless you get injured, your body is one thing you can generally count on. |
3:15 | eperal07 - Thanks for the questions so far! Keep 'em coming... |
3:15 | Andy Carvin - By all means, everyone should feel free to take a crack at responding to each other's questions. This is a community discussion as well, not just a Q&A for Leroy, esp. since he may not be able to answer every question |
3:15 | [Comment From Margo] Thank you, Andy. |
3:15 | [Comment From Debra from New Hampshire] So good to hear your voice Leroy. Not knowing what's going to happen next is an extremly difficult way of life to embrace. Perhaps never embracing it and fighting it out is the way to go?? Strength to you. |
3:15 | Andy Carvin - So glad to see you here, Debra! |
3:16 | [Comment From CHRIS BIDDLE] I AM A CANCER SURVIROR - I AM THE SISTER THAT WAS LEFT BEHIND TO MISS MY LOVED ONE. THIS SOUNDS VERY SELF CENTERED, BUT AS JANE WENT THRU BREAST CANCER (ON HER LIVER, BACK BONE) I WAS THERE AT EVERY TURN. AND AFTER THE PATIENT LEAVES US THERE IS NOTHING FOR US TO DO TO HELP HER ANYMORE AND YOUR LIFE HAS CHENGED IN ONE DAY - LIKE IS DID WITH THE CANCER COMING BACK IN A DAY. CANCER JUST STINKS! THANK YOU |
3:16 | [Comment From Mary Jane Minotti] Two times cancer since June 2001 with the same breast cancer as Elizabeth Edwards. For now everything is going well. Wish my marriage |
3:16 | [Comment From Debra from New Hampshire] Thanks Andy, good to be seen. |
3:16 | [Comment From Laurie Hirth] Amy, talk, make memories, live each day to fullest. Help your husband to enjoy the time you both have. |
3:16 | [Comment From TRE'] IT'S AMAZING HOW MANY PEOPLE FEEL THAT SAME WAY |
3:16 | [Comment From Lani] You can see a lot of the programming on the internet. Check there for programs. |
3:16 | [Comment From Kim] I love the comment this guy is stating right now about being brave. I'm living with mets cancer too and sometimes it gets old. |
3:16 | [Comment From Krupali Tejura MD] Hi Andy: Thanks for your commentary, yes, hearing Ted say he doesn't look as robust is hard. I saw Leroy last year at the Discovery Cancer Special with Ted, Leroy and Elizabeth... he looked quite robust then. |
3:17 | Andy Carvin - I remember when you were there, Krupali. Very happy to see you joining us. I haven't seen Leroy in a few months. He doesn't get to the NPR office as much as he used to. |
3:17 | [Comment From j.k.] A family member was recently diagnosed w/ stage 4 prostrate cancer and was wondering what or how is the best way to be supportive? (sounds silly I know, but one finds that at times you try to self-censor your speech a bit for the sake of others) |
3:18 | Andy Carvin - JK: My dad's a prostate cancer survivor and my mom's a 14 yr survivor of stage 4 ovarian and stage 2 breast cancer. Short answer: help them, love them, and let them control the radio and remote control. :-) |
3:18 | [Comment From Cristina Barthel] WOW!!! When my dad was sick THIS is JUST what he said! |
3:18 | [Comment From Krupali Tejura MD] Leroy and his bloggers came at one crucial moment at the end of my residency training... and there is not a day that goes by now that i'm practicing on my own back home in California that I don't remember their sounding words....so I just wanted to say a resounding thank you for helping me try to become a better physician. |
3:18 | [Comment From Mary Jane Minotti] Two times breast cancer and going strong, but the marriage didn't respond as well to the fallout of terminal illness. Life would be better with a support spouse. |
3:18 | [Comment From Paul] My father passed away recently from bone marrow cancer. We learned of the cancer at Christmas and he survived for four months. I, like my siblings, felt terrified throughout the four months. Like deer in the headlights. Now I feel regret for not having done more. For example, he went downhill so quickly, we never got to say goodbye. |
3:18 | [Comment From Christine] Two years out from early stage breast cancer (now 40 years old). This is the anniversary month of finding the lump and getting the diagnosis; it's tough. Love the question about being brave and also the comment about not letting it define you. I'm still really struggling with not obsessing that every bodily sensation is something horrible. The emotions are as toxic as the disease itself! |
3:18 | [Comment From Paul Kasson] I was diagnosed in 2000 with synovial sarcoma, a really bad cancer, but it opened my eyes to the larger issue of cancer "victims." In fact, I did a Grand Rounds for a hospital on that topic. What are your thoughts or words of advice to those victims that are not the patients? |
3:18 | [Comment From Susan] My mother passed away from cancer, which she fought every way possible, including experimental treatments which left her more ill. It seems like the best thing I could do for was to show interest in all her appointments, procedures, how she was feeling, ect. I still miss her. |
3:18 | [Comment From Jan] This has got to be difficult for Ted also....since he and Leroy are such good friends. |
3:19 | Andy Carvin - Lots of good questions coming so far. Again, Leroy will probably only be able to answer a fraction of them, but I'll be sure he gets the full transcript - and all of you can offer your own advice, of course. :-) |
3:19 | [Comment From Christine] I just discovered you and your blog - I'm dealing witih kidney cancer and mets everywhere -since January. I just wanted to thank you for helping me find a place where I don't feel alone anymore |
3:19 | Andy Carvin - They're taking a brief break so people can stretch their legs. Back in a minute. |
3:19 | [Comment From Susan] I just wanted Leroy to know how thankful I am for what he has done. It has helped me understand so much. Thank you, thank you. May peace find you however that may be. Namaste |
3:20 | [Comment From Debra from New Hampshire] j.k. : just be present, don't go overboard trying to make everything perfect all the time. Sounds silly but really "being threre" is of great comfort a lot of the time |
3:20 | [Comment From Mary Jane Minotti] Good luck to all of us. We have an insightful way of looking at life. |
3:20 | [Comment From Kim] Question for Elizabeth: We just haven't heard much lately about her treatment. Would she briefly share what is happening with her treatment and how she is doing? |
3:20 | Andy Carvin - Kim: Eliz won't be taking q's in this live chat. Go to http://www.npr.org/blogofthenation and you can post q's for her there. Sorry it's so confusing. |
3:20 | [Comment From Mary A. sullivan] My mother died of ovarian cancer five years ago; virtually no progress has been made in screening for and treatment of this insidious illness. |
3:20 | [Comment From Mary Jane Minotti] My heroine these days. |
3:20 | [Comment From Guest] I READ SOMEWHERE SHE WAS STAGE 4 |
3:21 | [Comment From Rebecca] What about translating the wonderful awareness you've raised about cancer into crucial research dollars? My father is a 1.5yr pancreatic cancer survivor, and I've learned through this process that research is the only hope for a cure. |
3:21 | Andy Carvin - Rebecca, could you say more about what you mean? |
3:22 | [Comment From Nate] This is heavy stuff |
3:22 | [Comment From Bobbie Jenke] Leroy-many of my friends are victims of Medical Malpractice--some of which involved Cancer. How can you imagine dealing with medical lies and cover-ups in addition to dealing with a terminal illness? What would your advice be to those who have been violated as well by the medical profession and must deal with the pain of those violations as they continue to cover up mistakes made? Thank you Leroy. I think you are wonderful. |
3:22 | [Comment From Kevin] Leroy--you are making a great contribution to others by being open about your experience. Thank you and God bless! |
3:22 | [Comment From Mary Jane Minotti] right on Elizabeth. Thanks for validating the fearful side. |
3:23 | [Comment From Ashley E-B] When Ted mentioned that Leroy was a ?? robust man?? it sparked a memory for me. At 15 I went to visit my 250 lb grandpa for the summer. When I arrived he could not stand up to greet me because he was down to under 100 lbs. It turned out that my family knew he had cancer, but did not want to upset me and this was to be my last visit with him. 16 years later I am still upset. I would have spent much more time with him had I been allowed to know of his illness. All the best to Leroy and his family. |
3:23 | [Comment From Rebecca] Pancreatic cancer is among the leading cancer killers, most people don't know they have it 'til it's too late. It's also one of the least funded cancers, and I can't help but believe there's a correlation there. Now that cancer is so often in the media, thanks to people like Leroy, Ted and Randy Pausch, now's the time to use this exposure to raise research $. |
3:23 | [Comment From Mary Jane Minotti] Ashley, my grandad too. |
3:24 | [Comment From L:illy] We could have a fund raiser... small dollars from so many would add up to a lot. It could go for research for one of the less well known cancers that doesn't have many treatment options. |
3:24 | Andy Carvin - Not sure what the rules would be for NPR to be involved in that.... |
3:24 | Andy Carvin - I think our ombudsman wrote a column on the subject recently |
3:24 | [Comment From Krupali Tejura MD] I completely agree with Rebecca, different cancers get more money for research than others.. it also depends on how many people it affects... there are statistically more breast cancer patients and prostate cancer patients in the world as compared to the others...so the funding can vary. |
3:24 | [Comment From L:illy] Well... |
3:25 | Andy Carvin - Lily, try not to hit the carriage return between words |
3:25 | [Comment From Jeff] Is there a more useful or better paradigm than "battling" or "fighting" cancer? |
3:25 | [Comment From Christine] the question is how to start something like they did with Susan G. Komen that's so big now |
3:25 | [Comment From Krupali Tejura MD] Randy Pausch is a forefront for brining pancreatic cancer into the spotlight. He is also a great inspiration for cancer patients and people in general. |
3:25 | [Comment From Cristina Barthel] to jeff: smashing, crushing |
3:25 | [Comment From Mary Jane Minotti] Laughing in the face of cancer? |
3:26 | [Comment From Cristina Barthel] not sure if it helps but it's what i would to if i could |
3:26 | [Comment From Tammy] Thank you to both Elizabeth and Leroy for sharing their story and lives. My husband is a 3 year 4 month NSCLC survivor who was stage IV when it was found. First, I have learned in helping him through this battle that there is always hope. Hope to beat or stabilize the disease and then for things to ease if the disease progresses. How have either or both of you fought the tendency to just go into a hole and think only about the fact that you have cancer and that it is progressing? What can the spouses do to help our loved ones who have descended into the depressing/negative side of having cancer? |
3:26 | [Comment From Ellie] Elizabeth, and Leroy, You are right on..............cancer does control so much of your life..................but we ( those of us trying to surviv) still want TO BE IN CONTROL!!!!!!! |
3:26 | [Comment From Louise Hawthorne] Do you feel that through all of the treatments and pain you have that the treatment and living these last two years have been worthwhile. I am a cancer survivor; my husband died of cancer and my mother died of cancer. My mother, when she woke from surgery said "I wish they had let me die." On the other hand, my husband wanted every possible treatment, but the quality of his life was terrible for the last 6 months. Is all of the suffering worth it? |
3:27 | [Comment From brian sandro] really makes you wonder how much any of us are ever in control |
3:27 | [Comment From cindy] I agree that cancer does end up defining you. After living with it for 10 years through 2 primary cancers and 1 mets. This is a gradual thing that you have to work through to come to terms with. But, just being here after this long has certainly helped. I'm 51 now and never thought I'd reach this age. I'm so happy to be here and, honestly, denial is still a part of the way I cope. Best Leroy and thank you for your encouragement and for this place! |
3:27 | [Comment From Debra from New Hampshire] Thank you Elisabeth for acknowledging that cancer is ALWAYS there, just not as loud sometimes as others. Keeping it quiet is difficult sometimes. |
3:27 | [Comment From Guest] I am a breast cancer survivor, it has been almost 1 year since my radical mastectomy., I had stage III ductal cancer. I have had 3 aunts, and 2 first cousins with breast and ovarian cancer, all deceased. In my family on both maternal and paternal sides, virtually all of my deceased family has died from cancer within 18 months of diagnosis and treatment. This is very difficult for me and my family. I seem to be doing ok, but I often catch pitying glances from my sisters...wondering how long I will be with them. I try not to think about it, but every day while showering, I see the reminder. I am fine, I wish there is something that I could do for my sisters to give them some comfort. |
3:27 | [Comment From Cristina Barthel] I completely agree with that... |
3:27 | [Comment From Cristina Barthel] what ted just said... |
3:28 | [Comment From francesca] cancer can leave your body but never leaves your life |
3:29 | [Comment From cindy] You are so right in trying to keep control as long as possible and Elizabeth has said it very well just now |
3:29 | [Comment From Andrew] Andy, if you can, I'd love to know how many people are here reading and posting now. |
3:29 | [Comment From Diane Renz] what is healing? Who are we? These are the questions I am left with. I completely enjoy to open discussion, when so often death and illness is kept in the shadows. None of us are getting out alive, so what do we do right now? |
3:29 | [Comment From Laurie Hirth] Leroy, So often as a caregiver, you worry about the patient and not yourself, you don't ask the questions you need answered. For myself, we did not want to believe it would take his life so we did not talk about the inevitable. Do you and Laurie talk about what is going to happen to her when this is all over, how she will handle being alone, how she will get the help she needs to cope with the loss of losing you? |
3:30 | Andy Carvin - @andrew: good question. First time doing this so I'm not sure how that stats tool works. |
3:30 | Andy Carvin - @andrew: if we can figure it out, we'll be sure to post it on the blog later. |
3:30 | [Comment From francesca] to the others CS that are in remission.. do you think of a relapse ALL THE TIME????? I am a total mess... I was so strong and together but now I can cry so much... I have a 4 year old son and I want so much to be there for him... |
3:30 | [Comment From Christine] where does the sudden anger directed at inanimate objects come from or when a simple project goes wrong at the get go? |
3:31 | Andy Carvin - Looks like we've got 371 people watching, though the stats tool for the chatroom is kinda crude. |
3:31 | [Comment From Bob] Why is this program not being aired in Houston, Texas? I missed the first part going to a computer. |
3:31 | Andy Carvin - The local station in Houston may air Talk of the Nation at a different time. Not sure, though. |
3:31 | [Comment From paula] bob- tune in on kuhf.org for the live stream. |
3:32 | [Comment From francesca] i have used these words from Ms. Edwards before to some family members.. ."who around this table will not die one day?" |
3:32 | [Comment From Ellie] To Francesasca - Some of us are ntoe in remission ( 5 = yrs of chemo) Have a good cry on a regular basis..it is good for you.......and good for your soul. |
3:32 | [Comment From Susan] I am enjoying everyone's comments, so insightful. I do think of relapses (for Hodgkins) as well as further problems with my CLL. I work hard not to think too far ahead. I intend to live a full, long an dhealthy life with my husband and son, but can't control that. All I can do is take things a day at a time. It's tough. I have a friend affected by cancer--her treatment continues--but she battles depression and a sense of hopelessness. |
3:32 | [Comment From Scott] is this show available for download after complted? |
3:32 | [Comment From francesca] to ellie: but I feel I am always crying ..... |
3:34 | Andy Carvin - @scott: not sure if it'll be downloadable, but the show will be archived as a stream. We'll also make Leroy's 4pm chat available online later. |
3:34 | [Comment From Claudia Simspon] I'm a 4 time cancer survivor and I don't think about getting cancer anymore. I'm used to the physical problems I'm left with and actually am enjoying my life now. I just got off my last chemo 3 months ago. |
3:34 | [Comment From francesca] should I be just jumping of joy that I bit stage 4 ?? at least for now??? |
3:34 | [Comment From Jan] Francesca, have you discussed taking anit-depressants with your doctor? |
3:34 | [Comment From Ellie] Francesca...............we shoud talk..............................for a while EVERYTHING is ovewhelming..................then you stop and think abotu what you really want to be doing...............besides fighting cancer.................................. |
3:34 | [Comment From Scott] @Scott: YEs, i use the podcasts via iTUnes all the time |
3:34 | Andy Carvin - @scott: TOTN podcast too? |
3:35 | [Comment From Cristina Barthel] yes francesca yo should jump for joy....my pops was first diagnosed with the highest level of multiple myeloma and he only lived what they gave him AND man did he figt...so yes you should jump for joy! |
3:35 | [Comment From Scott] Andy: i subscribe to Neil Conan's podcast, and get it on my PC every afternoon |
3:36 | Andy Carvin - @scott: then it should probably be a part of the next podcast, if it's the full 2-hr show you receive. |
3:36 | [Comment From shelby] As a five year cancer survivor, I consistently find that my friends fall into one of two categories: those who don't want to talk about it and those who don't want to talk about anything ELSE. |
3:36 | [Comment From francesca] i try to jump and please I appologise if I seem insensitive... sorry for your loss |
3:36 | [Comment From Diane R] interesting point Leroy about "positive attitude", always a double edge sword, our power of mind and its impact on the body, and that we can be blamed, or made to feel shame, if we get sick---did we think the wrong thoughts? |
3:36 | Debra from New Hampshire - Francesca: cancer brings up such HuGE rage, it's scary sometimes. I do get that. Not to be cute but lighting fireworks actually feels very good. Major holiday not needed. Also, I recommend talk therapy. Check with your oncologist for specialized therapists and social workers. |
3:36 | [Comment From Claudia Simspon] I can highly recommend doing acupunture during chemo and afterwards as well. It can help with mental as well as physical problems that come up. |
3:37 | [Comment From Tina] I think you should be jumping for joy....because you have this moment....because it is all we ALL can count on....this moment. BTW my husband is a stage 4 melanoma patient...and he has been told, twice now, he has six months....he's on his third, "You've got six months to live..." and its not easy, doesn't get any easier....but for this moment, this day....he has, and we have. We have right now. |
3:37 | [Comment From Guest] This is fascinating to me, especially since my mom was diagnosed with stage 4 ovarian cancer last month. She's currently undergoing chemotherapy. My question is how do you deal with friends and acquaintances who are understandably concerned, to tactfully tell them to back off. I have been giving updates by email but have received many requests for more information and people asking when my mom will be up for visitors. I have been telling them mom isn't ready but how can you get the message across for them to be more sensitive and wait for you to tell them instead of for them to keep badgering you for more information? |
3:37 | [Comment From Cristina Barthel] francesca: i just wnated you to be happy about it....i understand :) cmpeltely! but take what you get and run with it and jump for joy and live it up all you can! :) |
3:37 | [Comment From Beth, Hospice Nurse Reno] I want people to know that hospice is not giving up or giving in. We want to assist people to adjust to their diagnosis, find aggressive pain relief and determine what their desires are. Should they find treatments, we encourage them to pursue if they desire and sign off hospice. Patients can come on and off hospice as many times as they lke if they qualify based on health. I spend much time with my patients helping them learn to do as much as possible to feel that they have some control over their lives. Most of all we listen. Hospice is not an end, but a beginning to discuss and deal with the disease and its consequences and help patients and family proceed with living. |
3:37 | Debra from New Hampshire - If I had a nickel for every person who "knows someone who died of cancer" and used it as a conversation opener I could fund Dana Farber myself. |
3:38 | Andy Carvin - Just a reminder that when we get to 4pm, you'll have to reload your browser so it'll display the new audio stream. |
3:38 | [Comment From Jess] My mother is slowly dying from peritoneal cancer (brought on by colon cancer). She had surgery for the colon cancer about 3 years ago, but it came back a year later in the peritoneum (lining around all your abdominal organs). It's been pretty brutal and her strength, though not surprising to anyone who knows her, is stunning. She's fought this much longer than the doctors expected her to. She reached a point in the early spring where they no longer had any ideas for treatment other than palliative pain management. As is so often the case with cancer, she's such an undeserving person to have to suffer and die this way. My dad has been her constant caregiver these past 18 months and I can only imagine how hard it is for him. There's so little good support (medical, emotional, community) for patients in rural locations such as theirs, but they work through it. At this point, I think we all wish, and simultaneously don't, that she could make it to November to meet the first grandchild scheduled to arrive then. |
3:38 | [Comment From Holly Past] First, Mr. Koppel, I became a journalist after my father introduced me to your Nightly News as a young girl. Thank you. |
3:39 | Andy Carvin - They'll be back on air momentarily. Another stretch break. |
3:40 | [Comment From shelby] to Debra: SO true! Everyone has been "touched" by this heinous disease. My belief is that we all have rogue cancer cells in our bodies, and, if we don't take good care of ourselves physically and emotionally, our immune systems can't fight 'em off and they multiply. Lesson: Take care of yourself. Always. |
3:40 | [Comment From S] I had Hodgkins years ago and I had two preschoolers. My husband buried himself in work. I learned to not give him full reports of my condition. We didn't trust eachother's strengths or weaknesses. |
3:40 | Andy Carvin - and we're back... |
3:40 | [Comment From Jessica] I want to thank Leroy and NPR for this chat and the Cancer Blog. Part of what's so scary about the disease is the "unknown" AND no one wants to talk about it. Fear is inevitable, but it's much easier knowing you're not alone. Thank you, thank you, thank you! |
3:40 | [Comment From Cristina Barthel] andy you are doing great :) |
3:40 | Andy Carvin - @christina: thanks. :-) |
3:40 | [Comment From Guest] Living with cancer has been an incredible chance to learn more about myself. What are some of the things you all have learned, that might have surprised you? |
3:40 | [Comment From L:illy] I agree with Jessica. |
3:41 | Debra from New Hampshire - To "guest" who's Mom has ovarian cancer: set up a "Caring Bridge". It's a site designed for patients to give updates (like a blog). Concerned family & friends can go there for updates and not call everyday. Also they can leave their own messages which is very nice to see, especailly on treatment days |
3:41 | [Comment From Sheree] As much as we want to believe we are not defined by cancer, following diagnoses in 2007 I know I have been changed forever and my cancer was caught very early. |
3:41 | [Comment From francesca] Leroy: does sometimes the phrase " you are an inspiration" seems just to hard or to much pressure? I must say that people hae told me that and I am more often than not unconfortable with that? |
3:41 | [Comment From shelby] Hear, hear, Jessica! It's always comforting knowing you're not alone. |
3:41 | [Comment From cindy] Go to caringbridge.org to set up the site. It was a lifesaver for us too! |
3:42 | [Comment From Emily] Thank you Debra, that is great advice! We were planning on setting up a website but haven't yet. I'll get started on that tonight! |
3:42 | [Comment From Dianne] To Debra -- whenever somome tell's me about a friend, relative, etc. who died of cancer, my first inclination is to ask, "and what does this have to do with me?" But I stop myself, because I realize that they, too, are looking for an explanation, a reason, a justification, from anybody for the loss they have experienced. I don't have that answer now, anymore than their doctors had at the time. |
3:42 | [Comment From S] Carepages.com is free. you can post photos, patient updates, jokes, comments, etc. Everyone can get the same information at the same time. |
3:42 | Debra from New Hampshire - OK Leroy, I'M laughing! LOL!!! |
3:43 | [Comment From francesca] that was funny |
3:43 | [Comment From Cristina Barthel] To Guest: I tend to get mad at myself cause what i learned was that at times when my pops was around i was too hard on him for things that he was going through that i as a supporting daughter didn't understand and just wanted him to be different wanted him to act differently but now i know that at times to him that wasn't possible and i should have been more understanding. But among all this blog has made me a stronger person to understand more what i went through with my pops for 4 years from the moment the dr. told us he had multiple myeloma and it has helped me to stay somehow connected to people that i can hopefully give good words to and help with my support. |
3:44 | Andy Carvin - Quick question: did any of you participate in the "My Cancer..." photo gallery we did a little while ago? |
3:44 | [Comment From shelby] Elizabeth, you're hilarious! |
3:44 | [Comment From francesca] i looked like the macys float of Humpty Dumpy (sp?) |
3:44 | Debra from New Hampshire - Dianne: You could respond, you've always wanted to be bald but are afraid of razors. LOL! |
3:44 | Andy Carvin - LOL |
3:44 | [Comment From grace] From cancer, I've learned that I still try to "do it alone." And that it takes a lot for me to trust almost anyone, especially my oncologist. I've been lucky or blessed to have found an oncologist who is able to respect my need to be in control, permitting me to really have a good deal of charge over my own care. |
3:44 | [Comment From Amy Jenkins] I thnk laughter helps a lot. I have breast cancer as well as melanoma. One day a friend ask "I hope you are doing ok" I said " considering the alternative is dead, then yes, I am great." I shocked them. I have to laugh and smile and keep humor with my cancer. When I lost my hair my joke was "how does my hair look? Oh yea, I don't have any." Leroy, you are such an inspiration. You are not alone. Thank you so much for everything that you have done for us! Keep smiling and know that you have blessed all of our lives. THANK YOU! |
3:44 | [Comment From Margo] Debra from NH. . . that's funny! |
3:44 | [Comment From John Tynan] My mother was treated for cancer 3 times... as well as recovered from major heart surgery. It seemed like she would always escape major health issues. I am surprised at how shocked I was when her health turned and she quickly died. How do you communicate to the relatives of cancer survivors that their loved one doesn't have super human abilities and that they will pass on? |
3:45 | Andy Carvin - Hi John- so glad to have you here today. |
3:45 | [Comment From Lisa] Has anyone experienced a loss of friends or even family after their diagnosis? My husband's experience was that the experience seemed to "weed in" the important people in his life and weed out the apparently insignificant. |
3:45 | [Comment From Gavin] Have any of you ever heard anything hilarious from friends or family re. your cancer that wasn't meant to be funny? |
3:45 | [Comment From Holly Past] First, Mr. Koppel, my father inspired me to become a journalist watching Nightline as a young girl. Thank you.Second, my father died last year from Myelomonocytic Leukemia. We discovered it is a very rare Leukemia that typically hits men in their late 60's and 70's. As a journalist, I did my research and learned the outcome was very grave. However, my step mother did not and my father - a normally informed man - deliberately chose not to know. He grew |
3:46 | [Comment From Jess] A guest above asked what the cancer patient has learned ... as the daughter of a cancer patient, I can say I've learned a lot about my family during this time. We're very close and always have been, but there have been some surprising things (stories, memories, nuances of personalities) that have surfaced. I've learned a lot about myself and my capacity to love and care for and about someone. I've solidified my belief that my parents are a stunning example of what marriage can and should be. And I've learned just how important friends are and how important, difficult as it is, to keep up with my own life and needs. It's a constant struggle between wanting to spend all my time with my mom and knowing that I can't and shouldn't. |
3:46 | [Comment From Susan] I agree with Francesca--don't feel bad about crying. It really helps! My friend is much like that too. Often, she "runs away" to a place where she can just let go, because she feels bad bringing her husband down (it distresses him to see her cry). Find a special place where you can let it all hang out! |
3:46 | [Comment From cindy] To lisa, I had that experience also. I've learned to make the choice to only be around those people who are a positive influence in my life. I didn't always have to make the choice, some of those who weren't positive weeded themselves out anyway.... |
3:46 | [Comment From Deb in MN] One of my bes friends died of brain cancer. While being treated, she lost her hair and had a couple of craineotomies (spelling!!). For entertainment, she would go to the mall, sit outside of some very posh hair styling salons, and watch the startled faces of the passerbys. (The healthy folks would just assume that she had just come out from the salon) TOO funny. I sure miss you Steffie Weffie!! |
3:47 | [Comment From Lilly] Yes. A lot of friends did disappear. So did my favorite uncle, although he has always been a very busy man. My sisters remained my best friends. |
3:47 | [Comment From Dianne] Debra - my hair has thinned with the chemo for colon cancer, but I still have the majority of it. My husband and I joke that if you still have your hair, you don't get any sympathy. |
3:48 | [Comment From Cristina Barthel] to Gavin: My pops used to say whe the nurses came into the room or he had to go into for blood work....here come the vampires/the blood suckers...lol! |
3:48 | Debra from New Hampshire - Lisa: Cancer separates the friends from the good-time-charlies (no offense to anyone named Charles). It's a painful part of the process, can be dissapointing. I have learned that people show you who they are, you just have to listen. |
3:48 | [Comment From Christine] I just lost my Aunt 2 weeks ago while I'm fighting this and it's been hard even though she was 80 but she did show me how to die with grace |
3:48 | [Comment From Lorettta Lande] I would like to mention an organization which may help any and all of you in dealing with cancer. Compassion & Choices.org. We are national and available both online and by telephone. Sometime just having someone to talk with helps those who may want a stranger's ear, instead of family. Not being a religious person, I want to wish all of you the best. |
3:48 | [Comment From cindy] welll said, Debra. |
3:49 | [Comment From Guest] As my hair was just beginning to fall out, I once stuck a piece of gum in it an asked a particulary wise-cracking friend to remove it. He was quite surprised when a whole handful of hair came out with it. A little sick, maybe. Hilarious, definitely! |
3:49 | [Comment From shelby] We breast cancer ladies on Adriamycin are unmistakable: the baldness is COMPLETE. I can always tell, and I'll often approach these total strangers, point to my "new" hair and tell them that it WILL grow back. |
3:49 | [Comment From Lilly] To some of the people who once were around, they were all getting married and having babies. I tink they just didn't know how to handle someone who was fighting for her life. |
3:49 | [Comment From Jess] One more thing I've learned, or perhaps it's a regret: I wish I had started a journal at diagnosis. I've never been a journaler and I wish I had done it. The past year and a half have been so long in many ways that they've started to absorb my memory. I wish that I had journaled all the significant steps along the way, and with each one of those also written a story or memory of how my mom always was. I know the old memories will come back and take over my memory in the long-run, but I wish that I could refer to some at the times when I get sad. |
3:49 | [Comment From Ross] just a comment... i'm listening to the broadcast and it's hitting me how similar all these topics are to when i found out a loved one had hiv. the impact on their family and loved ones, the helplessness... the treatments... |
3:49 | Debra from New Hampshire - Dianne: my hair got very thin too, I used to wind it around my head and tell my kids it was my "Donald Trump Doo", hair by ADVB |
3:49 | [Comment From Linda] When first diagnosed in 1993 with advanced ovarian cancer, my daughter told me not to pay attention to the grim statistics as there are too many variables! My dr. told the family that I had 6-12 mo. to live....and it is now almost 15 yrs. later. It has been a bumpy road, with 4 surgeries, radiation and chemo...and I am feeling blessed to be here! Re: the medical marijuana comment...YES! it is a very helpful medication which cuts back the nausea, increases appetite and should be available for cancer patients. |
3:49 | [Comment From francesca] any NHL DLBC stg 4 out there? |
3:49 | [Comment From cathi] I've been rooted to Leroy's blog for 1 1/2 years. I don't have cancer. I have life - with all the dis-eases that entails. Leroy and the blog has been invaluable in wisdom, compassion, and pervasive Spirit |
3:49 | [Comment From S] Sometimes even the best friends can't take it, and drop away. And yet new people surge forward and become great friends and helpers. |
3:50 | [Comment From Lilly] I had a journal. Then one day I lost it at Panera. I can't imagine what the person who found it might have thought. |
3:50 | Debra from New Hampshire - "Old Geezer": just to clarify, we're all on horse back: HANG ON!!!! |
3:51 | [Comment From brian sandro] ted koppel is a class act |
3:51 | [Comment From Ellie] My darling husband writes a monthly "update" to our friends and family, and it is his journal. He tells of the status of the cancer, the drugs, or family and our life..............it has been wonderful. It is never too late to start writing..................... |
3:51 | [Comment From Laurie Hirth] That was good Debra! lol |
3:51 | [Comment From grace] I'm wondering how others in remission are faring. I find that after every scan, I'm relieved but also anxious and perhaps even ambivalent, wondering when the other shoe will drop. Sometimes I think it would be easier to just have the recurrence. The waiting, and uncertainty are very challenging for me. |
3:51 | Debra from New Hampshire - Linda: stories like yours are inspirational. So very glad you are here. |
3:52 | [Comment From Cristina Barthel] ellie: what a gare thing to do..that hs to be so hard, but such agood idea of his |
3:52 | eperal07 - A reminder: At 4 PM, you'll need to refresh your browsers to get the stream Leroy will be on. |
3:52 | [Comment From francesca] grace: I totalllllllllly "hear you" |
3:52 | [Comment From Amy Jenkins] Yes, I too have lost long time friends. I think it is just to much for them. I did learn that each of my friends handle it differently. That is OK. I don't expect everyone to deal with my illness the same way. |
3:53 | [Comment From Linda] Thank u so much Debra...it is the good stories that keep us all going. I do patient advocacy work to try to give back. |
3:53 | [Comment From kimmy in richmond] grace. I'm remission from stage III colon cancer. i relieve the a lot of anxiety with each scope and scan. |
3:53 | [Comment From Loretta Lande] I would like to thank Ted Koppel for being on the air in any shape or form. I miss his wisdom and insightfulness. Both Mrs. Edwards and Mr. Sievers "Thank you". |
3:53 | [Comment From Dianne] Lisa - not only has my cancer separated the close friends from the acquaintances, but it has given me a major blessing. With their support, my family and friends have shown me that they love me as much as I love them. |
3:53 | [Comment From Tammy] Grace: My husband is much the same. His cancer is stable, but each time for a scan brings a new bout of "well at least I won't die in the next 3 months!" |
3:53 | [Comment From Lisa] I'm a nursing student and am wondering what I can do to help cancer patients. |
3:53 | [Comment From shelby] Oh, Grace, YES. Anxious, angry, and deflated. Five years on, my friends and family just want to hear the "all clear" news, not the rollercoaster ride getting there. |
3:53 | [Comment From kimmy in richmond] I meant I relive the teh anxiety :) |
3:53 | [Comment From Ruth] In defense of care givers, it would be nice if the cancer survivors would let us help. We can see how difficult ordinary activities can be for you, and we would be more than happy to make a trip to the fridge to get a fresh can of soda or dish of ice cream. Yes, you can do it, but we would appreciate the opportunity to make it easier for you. |
3:53 | [Comment From Lilly] Grace, I am the same way about my remission. |
3:53 | [Comment From francesca] some people are just paralyzed by news of cancer and cant handle |
3:54 | [Comment From Sheree from Wisconsin] any medication usage should be up to the individual who is experiencing cancer. I get a kick out of it when someone comments on the hazzards of meds. hmmm cancer meds vs hazzards. |
3:54 | [Comment From Amy Jenkins] There is only one direction. That is forward. Each of us have to forward!!! |
3:54 | [Comment From AmyJo] Lisa - be sincere with your care - |
3:54 | [Comment From Christine] with regard to friends, I have found out there are more people who care for me than I ever knew - stage 4 has been a blessing in that sense |
3:54 | [Comment From Linda] Yes, Grace it is a very difficult time waiting for results to come back.....even tho it is 14 yrs since my diagnosis, I still am anxious. It seems like the Sword of Damocles forever hangs. |
3:54 | [Comment From Allecia from Hershey PA.] I am blessed,I do not have Cancer,but to those of you who are living with these disease I want you to know thousands of us who are cancer free are learning how to support,encorage,love,and listen to those of you whom we do love.Much Love and respect to all of you! |
3:54 | [Comment From Cristina Barthel] Yes, Leroy, that is what my pops used to hear all the time..you are young, keep fighting, try this and then let's see what comes up...we heard it month in and month out! |
3:54 | [Comment From Dakota] To any clinicians or oncologists out there: where are the forefronts of cancer research right now? What are the brightests spots? |
3:54 | [Comment From Cristina Barthel] that was the most difficult part of things |
3:55 | [Comment From shelby] Lisa: find out what makes the individuals feel powerful in their fight. Could be knowledge, could be spirituality. Play into that. |
3:55 | [Comment From robin messing bogdanoff] For Leroy and Laurie -- What is the most helpful or encouraging thing a friend or acquaintance or family member has done for you during your stay in Cancer World? And what was the least helpful thing? |
3:56 | [Comment From Ellen] I'm an oncology nurse & wanted to comment on the gentleman that called w/ prostate cancer. He may be interpreting the valid choice of "watchful waiting" with "do nothing - you're too old" |
3:56 | Debra from New Hampshire - Thank you Leroy, we ARE all in this together. Not a club we wanted to join but a nice bunch of people. |
3:56 | [Comment From Linda] If anyone wants/needs coping suggestions, or support....please feel free to contact me at hh5909@aol.com |
3:56 | [Comment From Pam] Leroy at any point in your disease have you looked into alternative medicine? I am a cancer patient and am trying to do everything I can do to fight my battle holisticly. I often look at conventional med. as a way of putting off the inevitable at the expence of being very sick and attacking every part of your body. Thanl you You are a great man Thank you |
3:56 | [Comment From LeeAnn] I am a three year survivor of brain cancer. AlsoI had radiation to follow the surgery. I am a college student in my junior year. Every semester I must decide whether or not to disclose that I had brain cancer and have significant cognitive issues that do create complications in my academic career. I struggle with telling my professors that I have these cognitive issues because in my freshmen year in college, and I was very open about my cancer with my professors. I felt that my teachers did in fact treat me differently from other classmates. For example, one of my proessors' gave me an A on a paper that I knew only derseved a c letter grade due to grammatical problems. For the last two years I have not divuldge that I am a cancer survivor, for fear of being treating differently or getting certain breaks on academic assignments. I do not want to be viewed as someone who needs a hand out or has had it so hard. It is very frustrating to feel this anixety about whether or not to be honest with my teachers. How do other people deal telling teachers that he or she has cancer? |
3:56 | Cristina Barthel - Leroy THANK YOU! |
3:57 | [Comment From AmyJo] Dakota - we need more government funding - hard for the smaller practices that have such talented Oncologists/hemotologists to fund the research |
3:57 | Cristina Barthel - Elizabeth! Tahnk you too! |
3:57 | Cristina Barthel - Ted Thank you! |
3:57 | Cristina Barthel - andy thanks for helping us hear this online |
3:57 | Andy Carvin - Ted's talking about us! |
3:57 | eperal07 - remember -- refresh your your browsers when this is over at 4 PM |
3:57 | [Comment From Bruce] Gotta run for a bit, I'll be back--hi Krupali, your absence lately has been noticed. Hope things are working out well. |
3:57 | [Comment From Louise Hawthorne] I think my husband's doctors gave him false hope. The quality of his life after 3 surgeries, chemotherapy and radiation was horrible. I realize that there could be breakthroughs, but do you realize how many people have died before those breakthroughs and suffered terrible pain and debilitation for th last months of their shorts lives. |
3:57 | [Comment From Bernadine] You guys are great, thank you! |
3:57 | [Comment From francesca] THANK YOU to all involved with this great program |
3:57 | [Comment From Margo] Yes, Leroy and Elizabeth thank you |
3:57 | [Comment From Gina] Hello everyone. My mom - my best friend - died in April 2004 after a six-year battle with breast cancer. Through it all, she was amazingly brave, and always carried on as if she would be around forever. Even when the end was very near, my mom looked at me, and said, ?? I fully expect to come out of this?? (ironically, while sitting in a wheelchair with oxygen tubes attached because the cancer had now made breathing difficult). I often wished that she had taken me aside and said the things you would say to your loved ones when you know you are going to die. Things like, "I will always love you, and I know that my cancer has changed your world forever, maybe made you more afraid of life." I often wonder now if her upbeat attitude made things easier on her family, or more difficult because we didn?? t talk about certain things. I totally agree with Leroy's comment about family members feeling helpless in this experience. Thank you everyone for sharing your wisdom and comments. |
3:57 | [Comment From S] Thank you Andy. Thank you all. |
3:58 | Andy Carvin - Don't leave just yet... |
3:58 | Andy Carvin - Leroy will join the chat in a few minutes. Reload your web browser then click the triangular play button |
3:58 | [Comment From Guest] I wonder if you could suggest a good cookbook/source of recipes that are good for cancer patients? A friend has just been diagnosed and would appreciate meals, though the list of dietary guidelines seems daunting...thank you, and all the best. |
3:58 | [Comment From Ravi Joshi] Leroy, Elizabeth, Ted - Thanks you. |
3:58 |