stand4hope

Not sure why this post suddenly popped up again, but just wanted to confess that I'm one of those blabber mouths. I've told just about everybody I know about my husband's disease. Maybe I shouldn't have, but of course, he doesn't know any of them, and the ones he does know, he wouldn't care if they did know. (That last sentence really does make sense, but you might have to re-read it.) I guess it's because I'm a very compassionate person and if I know that someone I love or care about is sick, I want to have the opportunity to offer to help them or encourage them, do it's "Do unto others as you would have them do unto you." You know? Like I said, most of the people I've told don't know my husband, but they do know me and care about me, and if I had held it back, they would have been just like all of you did when I held back on the progression of my husband's disease. Also, most of the people I've told share with me in my faith in Christ and they are my brothers and sisters in Christ, so they are family. I wouldn't intentionally do anything to hurt my husband, or upset him. As most of you know, I won't even use his name on this website because he's so private. I guess I feel like I know who to tell and who not to tell. Our neighbors are great friends and they know about the cancer, but they don't know the latest news. Because they are also my husband's friends, it's his place to tell them if he wants to. Oh well, I'm beginning to ramble, so I'll stop, but just wanted you to know that all of us blabber mouths aren't all bad, and we mean well even if we do talk too much. Try not to be too mad at us. Also, thank you for making me a little more aware of your side of this issue. Love, Peggy

Welcome back, Nancy. I hope you get to feeling better real soon. When you feel like, be sure to give us an update and let us know how you are doing. God bless you, Peggy

CONNIE: Thank you so much for sharing that (about that patients don't hear it all). I have been totally amazed at some of the things the onc has said that my husband didn't hear. I thought it was the WBR. JUST KIDDING!!! I didn't really think that. JEANETTE: I've come to the conclusion that I think most oncologists must be "Don't ask, don't tell" doctors. At least the three that we work with are. They will answer anything we ask, but they aren't real quick to volunteer information. One, they don't like giving us bad news anymore than we like to hear it. Two, you just have to ask, ask, ask. I truly think that they expect us to ask. If you stop and think about it, if they told us everything they knew, our brains would probably go into overload mode. Has your mother signed a HIPPA form and told the doctor that he can talk to you about ANYTHING that has to do with her medical condition? The waiting is the worst part. Good news is WONDERFUL. Bad news is devastating, but WAITING is torture!!! God bless you, Peggy

Debi, Now your brain and your face match - THEY ARE BOTH BEAUTIFUL! Congrats on the clean scan. Woopee Love, Peggy

Jane, I pray that it is a false alarm also. No matter what it is, you know that you have my love and support. PM anytime you want. Love, Peggy

Sharon, I am so very, very sorry for the loss of your friend, Bill. Please accept my sincere condolences. Love, Peggy

P.S. I also edited the original post at the top.

Oh my, Makwa, I am so embarrassed. I don't know where I got the idea you were a lady. Geesh! I humbly ask your forgiveness. Peggy

Good morning everyone. Mawka is a man that has been posting on the Newcomers board and I got him to switch to NSCLC last night. He did post there. Mawka, like bean_si and some others here, is all alone and also trying to take care of an 87-yr-old stepmother. Mawka's medical condition at this time is quite severe. It may not all be cancer related, but he has the most severe back pain that they don't know yet if it is the cancer. I think his report called it "massive degeneration". He is also very heavily medicated because of this severe pain, which is apparent if you will read his posts. He has no family and his friends have walked out of his life. The reason for my post is I know that someone on here posted ideas on who Mawka can call to find someone in hisr area to help him get around, someone to check on him, etc. He is meeting with oncologists very soon, and hopefully they will also give him some advice. I have looked everywhere and can't find that post. I think one of the places you suggested was the American Cancer Society. Mawka lives in the St. Louis, Missouri area. Mo had begun to PM him just before Mo went into the hospital. I have Mawka's permission to ask all of you if you have any ideas who he can call to get some help. Mawka: One place I would suggest is your church. If you don't belong to a church, that's ok, get out the phone book and call a church that is close to you. Thank you everyone and GOD BLESS YOU!! Love, Peggy

Shelly, I, too, am so very, very sorry. May God hold you tightly in his arms to help you get through this sad time. My deepest condolences to you and your family. Love, Peggy

Mawka, I sent you another PM. Did you get it? Peggy

Hi Mawka, I'm the one you've been talking to on PMs. You sure are straight and to the point about what you're going through! That's ok, honey, that's a lot better than beatin' around the bush. Have you told your doctor how sick you are getting from the pain medications. I think there are probably some medications they can give you to help with the nausea. Love, Peggy

Rich, I so much appreciate all the helpful links you post. I'm so glad we have people like you and John and Hebbie (I'm sorry I can't think of other names) who follow these online medical reports and pop them out here to us. Maybe some others will chime in here and we can give some great big recognition to everyone who feeds us with information like this. THANK YOU SO MUCH!!! God bless you, Peggy

Hi patnchas, and WELCOME! Like my friends have already said here, there are quite a few nonsmokers and never smokers on this site, so you will be in good hands because lots of people can identify with how shocked you are. I don't have answers about which doctor you should see first. Our family doctor sent my husband for a brain MRI because he was initially having headaches. As soon as the brain mets were discovered, we were immediately referred to an oncologist. The primary tumor was found in his lung. He has never seen a pulmonary doctor, just a team of great oncologists. My first response would be that since you don't have a cancer diagnosis at this time (and hopefully never!!!!!), that the internist would probably have a pulmonary doc do the biopsy anyway, but that really is just a guess. These nodules could be something and they could be nothing. I will pray for the nothing diagnosis. Good luck to you with this journey, and please keep us posted as you get more information. God bless you, Peggy

John, He had carboplatin with the taxotere the first time, and he had ear problems and neuropathy with that combination, but I don't know which one caused the problems. His hearing is ok now. If he decides to get the Cisplatin, I will ask about ethyol. You are correct about treating the brain mets and the barrier. Before anything else was done, he immediately got WBR because that is where he was symptomatic. Then he got the taxotere & neuropathy at the same time the lung was radiated, then he got the Novalis to each individual brain tumor, the he got gemzar/navelbine. When we go back, I will also ask about Temador and clinical trials. Thank you, John. You always provide such useful information. Peggy

There's a lady from Missouri called Mo. To the hospital off did she go. Her friends did declare, MO, GET THE H*** OUT OF THERE! We need you here don't you know? Love, Peggy

Sharon, You have my prayers. I am sorry to hear this news. God bless you, Peggy

Hi Tina and WELCOME! I'm so glad you found us. We are here to help you in any way that we can. This is the best group of people that you will find anywhere. Please keep us posted about your husband's progress. God bless you, Peggy

Oh no. Oh, Shelly, I am so, so, so sorry. I pray that God will bless you with his love, peace and comfort. Love, Peggy

GREAT NEWS, Bert! So very glad to hear this! God bless you, Peggy

Deb, Mo had started a couple of threads where she wasn't feeling well: http://www.lchelp.com/community/viewtopic.php?t=8174 http://www.lchelp.com/community/viewtop ... ght=#71888 Then, on Friday morning, her daughter posted this (at least we think it was her daughter): http://www.lchelp.com/community/viewtopic.php?t=8233 Peggy

Hi Cheryl, I'm so sorry to hear that you won't be able to participate in the GVAX trial. Are they planning to do whole brain radiation or stereotactic radiosurgery on the brain? Maybe you can still particape in GVAX after the brain lesions are zapped. Deb: Same question for you - are you going to get radiation? Keep the faith! God bless you, Peggy

Don, You are a wonderful, wonderful loving son, and I am sure your mother very much appreciates you sticking by her side. Keep telling her how much you love her - it will help her to fight to win this battle because those are powerful, powerful words. Please keep us posted. God bless you, Peggy

Wow, Gail, that is just wonderful. 11 YEARS!!! What an inspiring statement of hope. You are a blessing to this board. God bless you, Peggy

Karen, This is a very, very hard time for you. Please feel my comforting arms around you and hugging you with love. I am in a similar situation with my dad. He is on a ventilator and will never come off until he dies, or asks to be taken off, or I decide I want them to take him off. For me, and our family, the decision to remove life support is not an option as long as my dad is conscious, alert, responsive, smiling at us, and not in serious pain or in a coma. When a person is dying, they normally want to hang onto every moment of life that they can. That's one of the reasons that the end of life process can take so long - the patient WANTS to live and is hanging onto a thread of hope. I would VERY strongly advise against terminating life support unless there is absolutely no hope, and by no hope, I mean he has slipped into a coma out of which he will never recover, or there is brain damage beyond what life can support, or anything similar to that. I feel very strongly about this, and others may disagree. If you husband is smiling at you, squeezing your hand and reacting to your tears - then he is still very much alive and still has the power within himself given to him by God alone to overcome this setback and perhaps live for a considerably longer time. I'm afraid if you made a decision to remove the ventilator too soon, that you might regret that at a later time. I'm not saying that there won't be a right time - there might be, but I don't think with what you have described that now is the right time. Just my opinion, Karen, but I do want you to know how sorry I am that you are in this situation at all. I'm also sorry you took so long to talk to us. We would have all loved to have been there for you during this battle you and your husband and family have been through. Hang in there, keep the faith, and trust God. Love, Peggy