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MM

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  1. Mike is going through the same thing. He's had 25/35 treatments. It hurts to swallow anything! He finds if he drinks a boost (all he can do now) standing up, it seems to help. We saw Mike's onc. Friday (2 days ago) and our onc said these statements: "I'm very, very concerned over this weight loss"..."this weight loss is excessive"..."we need immediate intervention here", and then he mentioned Mike's tumor markers were up. Mike is only 5'5" and he weighted 144 before we started treatment. He stayed at that weight until 3 weeks ago. He's now lost 13 lbs (he's 131 fully clothed with shoes on)and he has two more weeks of treatment, plus, as our onc says, it'll be at LEAST two weeks after treatment before he can eat anything, more than likely.
  2. Thank you both, and no you're not stepping out of line here and yes, you're both right! So, I've gotten him the Chantex, Committ and gum, anything that will encourage him to quit. Thank you so much!
  3. Thank you Connie. Our radiologist said the doctors had a "conference" once a month to review and discuss patients and potential treatments. She asked permission to bring Mike's case up and I told her "by all means, please do". So, perhaps we'll learn even more in a few weeks. Yes, I am much comforted, but because of this group I'm not totally giving up the idea of surgery or talking with Mike about it.
  4. I've been riddled with the fear that I've not done enough to talk Mike into surgery. Last night at 10:30 I called my brother-in-law (Diane's husband) asking how he went through her decision to do nothing about her cancer. We talked a long time, it helped some, but not much. So this morning I called our radiologist. She's a wonderful young lady that we immediately liked. We had a LONG conversation and I thank the good Lord I called her. She admitted she pushed us hard during our last (and first) appointment with her toward surgery. However, after we left, and hearing why Mike is refusing surgery, she said she took a Long time reading his charts and even comparing them to some of the medical journal reports. She says now, after reviewing everything, she's agreeing with Mike. She said he had very valid reasons for not wanting surgery and she felt if he had it, because he's such a risk, she wouldn't give him much hope of much of a life after surgery. She went on to tell me of other patients with Mike's level of lung damage that didn't make it through surgery or their life after wasn't what anyone would want. She mentioned one man who, a year later, although considered cancer free is still in an assisted living home because of post-operative complications. She said there's a strong possibility, because of the conditions of his lungs he wouldn't ever get off the ventilator, if he made it through surgery. Of course she said no one knows, but again, because of Mike's lung history, she actually said if she had to make the decision for herself she would probably make the same one Mike has. So, it's amazing me how right his own instincts were and how strong he has been to stand up to everyone for his own quality of life he has left. I know he knew, even though I tried not to say, that I too was wanting him to have surgery. Yet he stayed strong. I am so grateful I talked to our Dr. this morning. Just wanted you to all know where we are now. He'll probably start chemo and radiation next week.
  5. Thanks Katie. I know, Connie pointed it out in the beginning that my original post was quite confusing. I'm sorry if it was, that was my fault. The night I wrote it I was so confused and in so much emotional pain.
  6. May I add to the above a special thanks to Ned, Jackie, Judy and others. After thinking long and hard last night, crying, and praying, I understand surgery is the best option for a cure if it's possible. But I am also very comfortable now with the understanding that sometimes instincts, when they are as strong as Mike has them, has to be paid attention too. I am resting much more comfortably in my support for Mike and his instincts. His decison, and I thank all of you. Somehow during this less than 24 hour discussion, I've reached the point of peace with what Mike is doing and I owe that to all of you and my Lord. So once again. Thank you!
  7. Cindy, Susan and Kasey, thank you. Susan please know it was posts like yours, Connie's, Katies, Adrians, etc. that opened me up to look at the guilt and fear I was trying to bury. For emotional health, perhaps you've done more good than any one else. Please don't ever hold back. I needed those posts to be able to honestly look at where Mike and I are. If everyone would have just coddled me, I'd have know somewhere inside that this issue of guilt was unsettled. Because of you and others, I can honestly go forward. Because of Ned and others who were the balancing factors, well, it just feels balanced. There may always be a part of me that blames myself for not ranting and raving at Mike. But there's another part that realizes I, and my family did that with Diane and it didn't work. Perhaps it would have worked with Mike, I'll never know. I'm just grateful for each one of you. This is a great group of people who REALLY do care...enough to be honest, enough to support, love and just be there. Thank you!
  8. Ned, Jackie, Judy thank you so very, very much. Thank you. Adrian, Connie, Katie thank you also, so very, very, much. And all who've posted trying to help. I've been on the internet and have belonged to various groups on a wide variety of subjects for years. This thread has been the hardest and most heart wrenching I've ever experienced. I needed each one of you to say what you did. Last night I prayed and cried my eyes out. I tried to look at the chain of events that have taken place over the last five months to know why Mike made his decision, why I basically supported him and didn't rant and rave and try to change his mind. I'll never know if it would have been different with him than it was Diane. In Oct. Mike's tumor was 2.4cm. By January 14th it had grown to 3.97cm with a VDT of 52 days and an SUV steady at 14-14.3. He started smoking again on December 17th after quiting 5 weeks. He felt that if he started smoking again, they couldn't do surgery because they had told him in no uncertain terms he HAD to be smoke free for 5 weeks. He said it was his protection against any influential talk trying to convince him to have the surgery. Some of you have made me cry and I wanted you to stop because it not only hurt, it compounded the guilt. But you are the ones who KNOW surgery is the best option and you were trying so hard to have Mike make the best decision. Other's of you also knew this, but you gave an understanding that balanced out the others. All of you I will be forever grateful to because I won't have to say, I didn't know. If only I knew, etc. If only... Because of all of you I'll be able, from here on out, to digest these "what ifs" and come to terms with them slowly through thought and prayer. So again, I KNOW you're right, my heart breaks but I thank each of you for your heart wrenching posts. I know it has to be hard on those, like you Connie, who fight, fight after fight and then see someone come on here only willing to put up what is probably a partial fight. Yet you fight on, not just for yourselves, but for others. From the bottom of my heart I thank each of you for your caring. For a while I didn't want to come back here, you weren't each holding me in your cyber arms and coddling me. But I realize now, I got honesty and the honesty was given because you do care and love the human being faced with this disease. Because of the understanding of Ned, Jackie and Judy, the sometimes brutal honesty was balanced out with just enough understanding to keep me coming back. What a group this is. This may sound strange, but you all feel more like family now. I hope those who still are angry at Mike and I (not personally, more at the disease) can forgive us for choosing the path he chose and will continue to be with us on this path. [/b]
  9. Recce: You said: "I have the utmost respect for the points of view expressed by Adrian and everyone else, but please consider this. Your husband seems to have all the data, and he knows that statistically the best chance of a good outcome for people with his diagnosis involves surgery, but something is telling him "no." And that something may not be simply fear. Perhaps he feels intuitively that FOR HIM, with his other respiratory problems, surgery is NOT the right choice. And, he may be right -- not statistically, not for most people, but for him." That's almost to the word what he said to me last night. He said because of his bronchitis (which he's had for 34 years, the scaring in his right and left lung, because of the pneumonia and bronchitis, and His instincts are STRONG (his words)that he cannot do the surgery. He said somehow he just knows. I had forgot that, or maybe didn't think it was something to put on the board, but thank you Recce. Ya'll, I know you all KNOW what you're talking about, I BELIEVE you. Please know I do know his decision may be his death sentence and it's breaking my heart. I've just gone through this same scenario with my twin and she died. Please believe me, I believe you. I've been there, and am in this nightmare again, all I can do now is support him. I'm trying to cope with this fear, this disbelief that I'm going through this again (this decision to not get surgery). Please, please don't keep trying to convince me to convince him. Again, it's breaking my heart and the fears are so many. I just need to know I'm not alone going through this scenario. That's all.
  10. Thank you all. It's been one of those rough days, on the roller-coaster ride, today's been one of the down days. My twin and I had a special bond. She wouldn't do anything, no treatment, nothing. I begged, cried, got firm, nothing, now she's not here. My heart is breaking over my husband. I've told him that we know, from research and from what the doctors have said that surgery is the best option, far above just having chemo and radiation. He knows all of this. I haven't pushed or prodded, just laid out the facts. I also know he has an extreme fear of surgery, coupled with his FEV1 numbers being so low and his severe bouts of bronchitis, he's put his foot down and said, "no surgery". So, the only thing left for me is a little bit of hope. I scour the net trying to find chemo/radiation success stories to hang onto. When I do allow myself to cry these days, I soon quit because I don't know who I'm crying for anymore, my twin, my husband or other family members (who have diseases other than cancer). Anyway, thank you so much for having me. My hearts heavy right now. Blessings
  11. Thank you SBeth. I've given this a LOT of thought and brought the subject up to Mike a number of times, even to the point of telling him I'd perfer he do the surgery, but I understand how he feels. I have to support him. I didn't support my twin and even though in the end I did because there was no longer any thing else to do, the lack of support in the beginning put a wall up between us for quite some time. When I went home to nurse her, that wall came down, but I know there is a line you need not cross when someone has made that decision. I'd want my wishes supported, no matter what. I'll support him. Sorry to everyone who doesn't understand. Blessings
  12. Prayers!! Hang in there!
  13. Thank you Littlegirl, that helps. Yes, we've checked into cyberknife and almost got it, but found out that, a big if, our insurance company OK'd it (and they NEVER have yet), the cost to us would be a minimum of $25,000, probably more like $60,000. I guess it's just hard knowing he's not going to do surgery.
  14. Thanks Connie. You're right, this is such a roller-coaster ride of emotion and experiences. And, to add to what we're going through, I just lost my twin 3 weeks ago to breast cancer. She had decided on "NO" treatment whatever. I begged, cried, argued and tried my best to get her to do surgery and chemo, etc. But to no avail and the last 5 months were so difficult on her, I and the family. Even though the last year she had my total support, I don't think she ever felt she had it totally because we didn't support her decision in the beginning. I don't want to put Mike through the same thing, so I'm again wanting to beg, cry and argue, but not doing so. I guess my confusing posts shows the emotional struggle and you let me know you understand this roller-coaster I'm on, and that's honest support, probably exactly what I need. Thanks for letting me know I'm not alone in this struggle. Well, we're off to get the CT simulation test done.
  15. Forgive me..the written word sometimes doesn't work well, especially if one is tired like I was last night. I was asking (for myself) for support with regards to allowing this to be Mike's decision. I was asking for support (or otherwise) for my not working hard to convince him, against his will, that surgery "is" the best option. I wasn't asking for the best way to go, I know, according to the doctors and many here, surgery is best. I guess I was tired and felt terribly guilty for not giving Mike the heavy hand when it came to making a decision. Part of me feels it's my duty to set him straight as to the best way to go, and if I don,t, then I'm to blame if the outcome is bad. Another part of me feels I have to let him decide and support him on that decision. As to why Mike fears surgery, he has a fear of surgery because they lost him one time before while under anesthesia. He has a fear of being left with one lung (and lower left lobe) to do all the work when he has his bouts (about 2-4 times a year) of bronchitis. His right lung, the one not removed, shows damage has been done to it already. He is a moderate risk for surgery because he has COPD and when he does have his bouts of bronchitis(he's had bronchitis for 30 years and has beginning emphysema)they are very, very bad. He's afraid that he'll be on oxygen after surgery because of his risks, and has been told this is a possibility. He's stated a lot of reasons for his fears. I apologize if I wasn't clear in my original post. Guess I'm not as good at writing as I sometimes think I am.
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