Nancy B Posted July 8, 2004 Share Posted July 8, 2004 Cat, Listen to Fay and please keep fighting. Do you have someone near you that can help you with the paperwork and documentation so it isn't such a burden on you? I know the feeling of fear and helplessness waking up in the middle of the night. Try keeping a night light on and soft music playing - it helps the night seem more manageable. I am praying for you. Love and hugs, Nancy Quote Link to comment Share on other sites More sharing options...
Tami Posted July 8, 2004 Share Posted July 8, 2004 You've had many responses maybe too many to read but I hope you see this! I was a stage 4 LC patient. I had an HMO and I was told to make my final arrangements. I had two (yes two) huge open chest surgeries for my tumor. The first one for diagnosis and removal of tumor (couldn't get it) then a second one after chemo treatment etc. (by a team) to finally remove my tumor. When I came out of surgery the 2nd time I was told that no matter what they did they couldn't remove it. It was attached to the aeorta, underneath my heart and I was inoperable. I should have more chemo/radiation and pretty much wrap up my life. I was 36-37?? with 3 very small kids, divorced and alone. BUT my primary care doctor listened to me when no one else would. I begged for more opinions, she wrote letters to my HMO, I called them many, many times begging for an out-of-plan visit to another hospital. Every time they denied me. So I had more chemo and radiation. But I kept begging for another surgeon to examine me. FINALLY, they relented and I went to Fox Chase Cancer Center. The allowed me ONE visit. He looked at my x-rays, pet scan and ct scans. Then he said "I can take this out...." I'll never forget that as long as I live. "I can remove that tumor..." I told him that I was told I was "inoperable" by two surgeons and the "tumor board" He just said "maybe they can't do it but I sure can!" Needless to say he did remove it--over two years ago! Please don't stop fighting. Maybe your group can't remove the tumor but maybe someone else can.... Fight with those HMO's-do what you need to for survival. I was a stage 4 inoperable LC patient with no hope-I've been where you are and it stinks. But believe me there is always hope. Regroup your thoughts, renew your strength and get going. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted July 8, 2004 Share Posted July 8, 2004 Tami -- who was your surgeon at Fox Chase in Philadelphia? (Never hurts to throw their names out there!) Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 8, 2004 Share Posted July 8, 2004 Cat, You are probably right, no one is going to be reasonable about our posts about the pain we felt on the deletions So all my writing and urging for reason was for naught. People may not care much about our feelings, Cat, but they do seem to care about your tumor (still not sure what it ismade of, are you?) and perhaps they still care about your feelings about your tumor. So I guess be thankful for that. I do think Fay knows of ways to fight HMOs. Usually the threat of publicity is good and might help. Sometimes you have to go beyond the threats. I wrote several scathing articles about Indian Health Services on the Rosebud Reservation. You think our healthcare is bad? Anyway, some changes were made. Hopefully not all superficial. I was a pretty brave journalist, so who knows now what will happen now that I am not there keeping close eyes on them. You may be my only friend, but you've probably never had a more loyal one than I. So whatever I can do, all you need to do is ask. I have fought many things and suvived. shi_, I have survived on my feet with Lc longer than I was given and I am still on my feet, so I must have some resolve in me. Anyway, hear Fay out. love elaine Quote Link to comment Share on other sites More sharing options...
pecola Posted July 8, 2004 Share Posted July 8, 2004 Cat, I'm so very sorry you received such cra**y news from your cra**y Dr. Please take heed to Fay's advice. Personally, Cat, I can't imagine people in general disliking you. I have always thought of you as insightful, funny, kind, and intelligent. What's not to like? Same goes for Elaine. I think sometimes we really just have to agree to disagree. I think it's important that everyone voice their opinion - even when its an unpopular one - but in regards to board policy, etc. , sometimes you just have to play by the house's rules, even when you don't like them. That doesn't detract from your value or contribution to the site. I hope you both keep coming. We need you and Elaine, and maybe you all need us too. Gina P.S. However she gets there, I hope your daughter gets to visit you soon. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted July 8, 2004 Share Posted July 8, 2004 Cat, I think maybe Dr David Schrump at NIH could help you. He's a thoracic surgeon who cut my tumor away from all the major nerves and vessels going into my neck and head and heart. He's world class. I don't think another surgeon would have touched it. NIH usually pays for transportation. You can sleep in my bed, I'll take the couch. There's a shuttle bus from where I work (NIH) to the main hospital. If you want to check it out, that is. dschrump@nci.nih.gov Tell him the details, quote the dr's findings from the radiology report. Tell him you can't get a straight nsclc/sclc diagnosis. I came in on a tumor acquisition protocol. He untangled tumor from veins and nerves for 14 hours..... Tell him MaryAnn Hutchings told you he was capable of something like this if it is at all possible. I don't know what protocols they have up at the moment, but if he can help you out, I think he would. He's a good man. Think about it. XOXOXOX MaryAnn Prayers always, that you find answers... Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 8, 2004 Share Posted July 8, 2004 Thanks Gina, I do need you guys and I did agree to disagree already. I am pretty emotional these days, I see. Thanks for offering support to Cat and to me, too. elaine Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 8, 2004 Share Posted July 8, 2004 Tami I am really confused a bit by your story. Were you first Dxed with adeno and then came to find out it wasn't cancer at all? Is that what I read? elaine Quote Link to comment Share on other sites More sharing options...
Haylee_38 Posted July 8, 2004 Share Posted July 8, 2004 Cat, I just wish there was something I could do to help. If there is { ANYTHING} please let me know. There are alot of good doctors here in Ohio and if you found one here who could help. My home is a open invation for you to stay. I know its easy for me to say when you are doing the fighting but please do not give up. You remind me alot of my mom from reading all your post. Haylee Quote Link to comment Share on other sites More sharing options...
Fall54 Posted July 8, 2004 Share Posted July 8, 2004 Dear Cat, You remember long ago I told you I didnt think anyone should live alone with cancer and to please come stay with me. I still mean that with all my heart. No, I am not you but I do feel your pain. I have also come to care very deeply for you as you know. I know I live in NH and I dont have cancer and may not have any idea what the right routes are for you but someone can help us there. I have a very nice big guest room that is yours if you want it. Please consider it. I love you and pray for you all the time. God Bless You, Jane Quote Link to comment Share on other sites More sharing options...
SJAS Posted July 8, 2004 Share Posted July 8, 2004 Cat, No wonder you are so worn out having to carry this battle on your own. But I'm with those who want you to go to see someone else. We have had all the "experts" totally disagreeing at times, but it gives us the feeling of control when WE make the decision and guide treatment. Get some other opinions, get some options, make your decision and, like we were told, don't look back. Sending prayers for strength. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted July 8, 2004 Share Posted July 8, 2004 "People may not care much about our feelings, Cat, but they do seem to care about your tumor (still not sure what it ismade of, are you?) and perhaps they still care about your feelings about your tumor. So I guess be thankful for that. " I'm a People, and you, Elaine, are not qualified to speak to the issue of what I care about and don't care about. For the record, I care about the person I have come to know as Cat. Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 8, 2004 Share Posted July 8, 2004 Fay, I was only responding to what Cat feels, too. Please relook at the context that the post referred to. So glad though that you clarified your feelings. I also see that I should have added the quaifiying word, "some" or "many" or "most" or "a few" to the word "people" in my post, so that it did not seem to include everyone. Mia Culpa elaine Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 8, 2004 Share Posted July 8, 2004 Hebbie, Great article. I sure hope this is something that can help Cat. Now we just have to figure a way to get her there and past the wicked old witch called HMO. elaine Quote Link to comment Share on other sites More sharing options...
Jana_W Posted July 9, 2004 Share Posted July 9, 2004 Oh Cat I hadn't been on the board for a couple of days and was so dismayed to read this thread. My heart is breaking for you and the pain you are going through. I really don't think I have anything else to add as there has been so much good advice etc already. I double ditto what Karen said and strongly urge you to keep looking at alternatives. As long as there is life, there is hope sweetie. I wish I had more I could say to help things. But please know I am thinking of you and sending you strength and positive thoughts and energy. with love Jana (and I am so sorry it's taken me so long to reply) xxxx Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted July 9, 2004 Share Posted July 9, 2004 I can't believe all the kindness shown to me here. I've never received so much in my life, people offering homes or time to stay with them. I'm speechless and very grateful. I spent yesterday running around, called M.D. Anderson for appointment. I'm waiting on answer but it seems Maryland or Pennsylvania is better in the way of surgery. I've yet to call my Ocology Care Manager. As I mentioned, I received 2 calls at the beginning, the second one centering on end of life care. I told her leave me alone. Well, I didn't mean she could not help me with day to day problems. I feel like I'm being punished for telling her I did NOT need to concentrate on end of life at the beginning of my fight. But it's true. I got a fax machine (thanks for idea Fay), organizer to set up an easy to carry and look at file for tests, will, right to withhold care, what bills must get paid when, what must be terminated, my assets (ha ha ha - my dog is about the only one and my so-called pension which I don't receive yet). I need to do a living trust. Everything has to be done without attorney. I'm having trouble with my life insurance. They're saying I have to pay $50/thousand and the company says retires only pay $2.75/thousand. This is being checked out but there's a deadline and it's all confusing. What to I do with my condo? If I put it in my daughter's name I'll lose homestead exception and won't the remaining mortage count against her credit? We need a place in here to discuss such practical matters, don't you think? My family is mostly oblivious to my predicament or kindly sendng me single line notes like "we're praying for you" Glad I made such an impact but considering the parents, I guess I can't fault any of them. I dunno. I haven't heard a word from youngest two sisters and youngest brother. I remember, last visit to one of the oncs, I asked "Shouldn't I get my annual and mammogram - it's time." I was told not to bother. Gee that should have made me wonder. Oh, it did. I just didn't want to wonder too deeply. There is no one to guide me. I feel the oncs have washed their hands of me. Surely the surgeon has. Both my oncs set their next appts. three months away. I forget to ask about tumor markers but the medical onc is still insisting it's small cell. At the beginning he said small cell doesn't work with tumor markers. I'm in a state of confusion. My older brother is coming for the weekend. He has never been here in the 25 years I've lived in Florida. I'm going to have a hard time concentrating on his visit and trying to make things pleasant. I've known for weeks something was wrong. I've been feeling "off" for weeks. I should have done something. I just didn't know what was wrong or what to do and I surely wasn't being kept informed. Thanks to everyone. Please don't leave me. You're all I have. Cat Quote Link to comment Share on other sites More sharing options...
karenl Posted July 9, 2004 Share Posted July 9, 2004 Cat Sending you much love. Karen Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted July 9, 2004 Share Posted July 9, 2004 Cat, I just saw your post here. I am so sorry to hear this news, There is always something that can be done, prayer does wonders and you definitely have my prayers. David C Quote Link to comment Share on other sites More sharing options...
Connie B Posted July 9, 2004 Share Posted July 9, 2004 Cat, Just wanted to share with you that last year I had a MYXOMA tumor removed from my left atrim! It was NOT cancer. I am a ONE LUNGER, so that alone causes serious risks in doing surgery. Do you know if your heart tumor is a Myxoma tumor? Being that your tumor is on the OUTSIDE of your heart, this may NOT be a myxoma! Not sure, but that's was my belief that myxoma's are in the atrim and not on the outside of the heart. Don't take my word for it! Non the less, I came through this and I had to have this done TWICE within 10 weeks time. Reason for that was I started to bleed the first time around and they had to close to save my life. (good choice)! As for all the other hoppla, I would like to suggest that you take some of that wonderful energy that you have spent on this board and put it toward getting yourself some better doctor's. I think you have had WONDERFUL support and suggestions from Fay, Hebbie, and everyone here. I think rather then saying your tired, etc.... maybe it's time you DO GET MAD and take the bull by the horns and make some major noise in your area about your HMO and how you have been treated. Maybe you need to contact the Newspapers and News Stations and see what that will bring you. You have been through a lot, I have no doubt, but so have many of us, and we tend to lose track of what we are really fighting for when things get all screwed up. So, put your FIGHTING CAP on and get to work on making some NOISE and getting the attention you really need from the medical professionals. You have LOTS of info right here to get you started. I know your a very bright person, and I am sure you can make waves as to getting that attention. Good luck and God Bless. Hugs, Connie Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted July 9, 2004 Share Posted July 9, 2004 On your advice Connie. Could we stop about the "hoopla" talk. If I were to speak my mind on that I could do an entire article. Oh, yeah, I did. Let's just let it go on this board. As for "putting on my fighting cap" and "getting angry", I will re-post part of an early post: No one ever has fought a battle for me. How do you think I'm still here. No one protected me from the monsters in the basement when I was five. The monsters that had a name and tied me up and tortured me. It was real. I had many years of that. No one ever helped when an aneuryism in my brain ruptured open. I recovered and regained my skills on my own while raising two kids. Oh there's more but I'll spare everyone. I've been fighting and fighting and fighting. I have been fighting since birth. I'm not giving up but right now I'm plain, worn to the soul. I realize you mean well, Connie, and I'm sure that you will respect the fact that my response is in part because I'm totally exhausted. Thanks. Cat Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 9, 2004 Share Posted July 9, 2004 deleted a ritilin induced post. It was only funny to Cat and I anyway. Quote Link to comment Share on other sites More sharing options...
Connie B Posted July 9, 2004 Share Posted July 9, 2004 Sorry Cat, I was just tring to help. I read all your posts, and I saw the one you re-shared with me. Didn't mean to get you upset or think that I was picking on you. That's not the case. I'll just butt out! I think we are all just trying to help you my dear the best we can from afar. It's not easy, I know! I know your tired, and maybe you just need to take a break. Maybe your brother coming is just what you need to take your mind off of things. My main purpose for my message to you was to share with you that I had a Myxoma tumor. I was just trying to lessen your fear so to speak. Sorry that my remarks on the (hoppla) ordeal took priority over the Myxoma tumor. Didn't mean for that to happen. Wishing you all the best! Good Luck, Connie B. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted July 9, 2004 Share Posted July 9, 2004 I think I'm going through a weird kind of denial. When I was at the surgeon's office, we talked about the different dxs - different path reports. I said that I was thinking of having the slides sent to Armed Forces Pathology (especially if further chemo is involved). His response, "Why bother?" I was not allowing myself to absorb everything thrown at me, given the circumstances that he was hurried, didn't want to bother with me and was loud and obnoxious as to my not understanding what a massive, inoperable tumor this was. Then he goes on - says in his opinion a large cell NSCLC (I guess with neuroendocrine features) will be treated like SC in the future and no surgeon will try to remove such a tumor. "Thanks doctor. I hope you have a good day." Cat Quote Link to comment Share on other sites More sharing options...
brm1949 Posted July 9, 2004 Share Posted July 9, 2004 Cat, please find some other oncology Drs, just for another opion. It can't hurt anything but may help. Please? Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 9, 2004 Share Posted July 9, 2004 As to massive: Your's is not massive comparatively speaking to some on the board. I think MaryAnn'es weighed something like 20 pounds. Karen from California--her's was 19 cm., I think that is what is in her profile etc. I only say this to give you hope. Ok? And to try to help you get that damned surgeon's hideous words out of your head. elaine Quote Link to comment Share on other sites More sharing options...
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