stand4hope

I know this probably won't help you feel much better, but I'll say it anyway: It could be something else! I know it also could be cancer, but it also could be something else, and you know what? For the next week, every time I think about you, I am going to think and pray those words: It could be something else!!! Love, Peggy

Oh, Sharon, this has been a sucky day for you, hasn't it? My heart goes out to you in the biggest way. I know how it feels when you think things can't get any worse - and then . . . . You will hopefully see a very quick change in your dad with the decadron. When it does what it's suppose to do, it is dynamite. My husband's headache on dx disappeared in less than 24 hours, after he got the decadron, and he took it again when he was so flattened from taxotere/carboplatin, and it worked then, too. All my prayers are headed your way! Love, Peggy

Pam, To some things in life, there is just never going to be a right or wrong answer. 2 + 2 is always going to equal 4, but telling the whole story to your dad doesn't guarantee any certain result like 2 + 2. It won't guarantee that he will stop or alter the chemo, and it won't guarantee that he will continue with it, either. It won't guarantee that he will be accepting, and it won't guarantee that he won't give up. I think in every single case, the only way to know what to do is to follow your heart and trust God with the results. I would think that any cancer patient that doesn't know that death is a possible result would have to be from another planet. I also think that hope is the most important thing of all to any patient with any disease. My favorite expression for at least my entire adult life has been to expect the best, but prepare for the worst. I think Dr. Joe said it a little differently on another thread: Hope for the best, but plan for the worst. My husband does NOT know that his cancer cannot be cured. Early on, he even used the phrase, "No sweat - they caught it early." My heart almost stopped beating because he said that right after he was told he had a 7 cm. tumor in his lung and 8 brain mets. It wasn't until June (I think) of this year -- it was right after his PET scan anyway, that it hit him. I will quote him, and he said this in a very loud, angry voice: "All this time, I NEVER - NEVER even considered that I MIGHT NOT MAKE IT - and I DON'T LIKE IT!!!" His onc is what I call a "don't ask, don't tell" doctor, so he has never even told him his stage. Early on I decided to just let him take the lead because he is the one with cancer, and if he wants to know more, he will ask. I have felt really good about that decision all this time, but now I am beginning to question it, but know I shouldn't. As we are approaching new scan results, I am scared to death that the results are going to be bad, that he is going to get the message loud and clear that he can't be cured, and that he is going to feel deceived and angry - both by the doctor and by me. I know if that happens, and he is angry with me, that I will cry for about 2 days, but I also know in my heart that I asked God what I should do, and I felt led to NOT tell him what I knew, and I will always feel that was the right thing to do. Is that the right thing for you and your dad? I DON'T KNOW and neither does anybody else!!!!!! You have to go with YOUR heart, and I hope that would be after you first asked God to lead you. I know there are stories of people that have been told the bad news up front and have just given up, but there are also others that after that first few days of shock and tears, decide to fight it. I have to add one more thing and that is that to "add two months to his life" can mean a lot of things. Adding two months to what? 6 mos? 1 year? 18 mos? 5 years? You see, I believe that the "two month" time frame he gave you is based on a statistic that he knows in his head - that being that the average life expectancy after dx for a lung cancer patient is overall increased by two months with treatment (I am not saying that is accurate because I don't know--I just think that's why he said two months). Well, for heavens sake!!! Increased from what point? 6 mos? 1 year?, etc., etc. Many of those people in that statistic pool lived more than 5 years, and many lived LESS than two months. Neither the onc or you have any idea how long your dad has, so if you decide to tell him he can't be cured, he also needs to know that many, many people live way beyond that median survival time and he could be one of them! Pam, whatever decision you make, if you go with your heart, and not your head, it will be the right decision. It could appear later that your heart failed you, but don't believe it. Even if it gets ugly, if you went with your heart and felt 100% that it was the right thing to do at the time, then it was. God bless you, Peggy And P.S. to Dr. Joe: I think the same thing is true for you: JUST GO WITH YOUR HEART!!!! If God is in your corner and you seek his guidance, you will make an individual decision in each and every case, and that decision won't always be the same, but if you asked God first, He will make it turn out ok. And some people might get mad at you for being honest and stomp out the door to go to somebody else, but you will know in your heart that you did the right thing, and it will be OK. There is no right answer here folks!!! It can go either way.

My suggestion will not be popular: Love her, accept her and leave her alone. Don't leave pamphlets laying around, drop hints, make faces or turn the TV to an anti-smoking commercial. Your mother knows that smoking is bad for her. She knows she shouldn't do it, and any hint of anger or disgust toward her will only make it worse. It's no different than any other addiction (alcohol, drugs, 000, xxxography, food, etc.). The person performing the act KNOWS all the reasons they shouldn't be doing it. Smoking is a powerful addiction and when she's ready to quit, for good, she will, but not before. When I was a teenager, a member of my family was a severe alcoholic. I remember pouring alcohol down the sink, throwing fits, crying, shaming, etc., etc. After about 4 sessions at Al-Anon, I learned that I was doing everything WRONG. By condemning and shaming, I was only adding to the guilt and causing the person to increase the activity. I learned to ACCEPT this person just the way they were, but also that I had to let the person suffer the consequences of their behavior. I was taught that "until you walk in their shoes" you will not understand, and that is a very true statement. The person never did stop drinking, but I did learn to accept it and love them. I also learned, after I became an adult, to stay away from the person when I knew heavy drinking was going on. Just because I accepted it and loved this person, didn't mean I had to be around or witness this activity. If any one of us reading this posts can ever understand why intelligent people continue to smoke, they will be richer than all of us combined. It has NOTHING to do with intelligence. It is an addiction. I could be wrong about the statement I am about to make, but I doubt it. I would guess that there is a very large percentage of the 1400 members of this board, with and without lung cancer, that are still smoking. I would also guess that a lot of them don't post because they are ashamed or are afraid they will have to admit they are still smoking. I think this is very sad. I would pray that any smokers that don't post would put it behind them and just join us for support, whether they are a caregiver or an lc patient. Your anger and frustration are very normal and I understand how you feel, but I think if you can get to a point of acceptance and understanding, the anger and frustration will disappear. Your mom knows she can get help from a doctor, wear a patch, buy Nicorette, get hynotized, etc., etc. and doesn't need for anyone to tell her those things. When she wants to quit for good, she will. God bless you, Many, and I will pray for your mom. Peggy

Jane has asked that I let everyone know that she is doing a lot better. Her mother has been visiting and will be with her for another week and then they will fly to NC to lengthen their time together. Her son also got married which was a joyous occasion for her. They have been to Maine to visit Alan's home and she got through it really well. She also is very excited because she has been able to cut down on her depression meds and soon will be completely off of them. She thinks she is coping better with Alan's death and that's it's easier when she stays away from the board. She asked me to give you this message: God bless you, Jane. Peggy

Out of 2,000 posts, I understood 1,000 of them. I frequently send Becky a PM with a quote from one of her messages and asking to "splain this please . . . " Beck, you're the best! Love, Peggy

OK, since Curtis posted his cute kid joke, I get to do one, too. My sister (a cute redhead I might add) and her daughter (another cute redhead) were in the grocery story. My niece was about 6 or 7 years old. My sister was writing a check to pay for her groceries, and my niece blurted out: "MOMMY! I thought you said we didn't have any money in the checking account!" My sister's face got as red as her hair and she got out of there as fast as she could. Peggy

Melinda, What the others have said to you is perfect. I would only add that this is a common feeling. It happens to all of us. I took my dad's death really hard compared to other death's we have had in our family. It came from my being his caregiver for 5+ years and it was just really, really hard. I could not hide my emotion from my husband, son, brother and sisters. It just poured out of me like a gushing waterfall and it was strong, intense and deep. I could tell that my family was grieving for me, but I just couldn't keep it from them because it was so overpowering. Oh, they were grieving, too, but I know their hearts and minds were all centered on me because I took it so hard. Like you said, they grieved for the grieving. My family has always been very close, but during that time we became even closer. We were like this giant, strong wall of strength that couldn't be shattered, and when one of us was weak (me), the others became strong. This was particulary tough for them because I'm pretty much considered the anchor in the family. When they saw their anchor go down, their pain increased even more. I guess I'm rambling here and don't know exactly how to word all this. The only way I can think of to sum it up is to this: Geoff will be blessed by your grieving for his pain and suffering. I know I was by my family's reaction to my grieving. Lots of love to you, Melinda. Geoff is a lucky guy. Love, Peggy

I am shy . . . I sent you a PM. My fertility studies probably beat the long ago record of everyone else here (about 33 years ago), but from what I've read so far, everything sounds about the same. We kept at it for 4 years and then adopted our son. Have fun, Andrea (muahaha) (Did I do that right, Becky? ) Love, Peggy

Angie, If there is ANY way you avoid a nursing home, I would do it. My dad was in a very nice nursing home with very loving, highly qualified, skilled care nurses. The trouble with it, though, is there just aren't enough of them (nurses, aids, etc.). They will try as hard as they can, but your dad could go for very long periods of time without the attention he needs, i.e., diaper care, a drink of water, sometimes even vomiting, etc. I like Ry's idea about a nursing home WITH hospice care. Also, should you decide to keep him at home, here's how the nurses and aids took care of those needs for my dad. He was probably about 180 lbs., but very short and stocky - heavy and hard to move because he had all his weight in his mid-section. The did not use diapers. They kept an oversized pad under him, and what they would do is two of them would roll him on his side, roll up 1/2 of the pad just until it was real close to his body, clean him up, have a new clean pad rolled and right behind the soiled one. Then they would give him an extra hard push on his side, yank out the old pad back toward them, rolling it as they pulled it out, and the slide the new one under him at the same time. I'm sure it would take some practice, but the nurse that comes in could show you and help you. Oh, also, they kept a pad just laying on top of him to protect the top sheet and blanket. They didn't like to use diapers because if they have to wear them for a long time, then they start having problems with rashes, etc. I know this is so, so hard. You have my most sincere compassion. Love, Peggy

Tami, I'm sitting here grinning. I read this post this morning while I was at work and couldn't take the time to write, but I thought about it a couple of times today trying to think of some way to say what I felt. I don't have to. Everybody else did it! Here's my response: ditto, ditto, ditto, ditto, ditto, ditto . . . . . God bless you and good luck! Love, Peggy

LOLOLOL! I don't have either, but do they sell them at the drug store? Wait, while I get my wallet! Love, Peggy P.S. Angie, sorry - not trying to steal your post, but couldn't resist.

Hi Laura and WELCOME! I just giggled outloud when I read how you felt about posting, and then "Here I go!" LOL! I can remember feeling that exact same way. I had never, never done anything like this before. I wouldn't even participate in a chat group before I came here. When I first posted, I remember holding my breath while I hit the submit button. Then, I sat at the computer for hours waiting to see if anybody would talk to me. Well, they did!! LOL! Thank God! We are so glad you found us, but like others will say, we wish you didn't have the need. But you are here, and please consider yourself one of us. Just start right now, tonight, posting wherever you want. Replying to someone's post the first time is just about as hard as posting your introduction, but it gets real easy after a while. We're glad you're here and I can tell your mother is blessed to have you as a daughter. God bless you, Peggy

Angie, I'm really sorry to hear that you are not feeling well, and I hope you get an antibiotic for the bronchitis. As far as everything else with your dad, I can't say anything about the coughing because my husband hasn't had that, but I do want you to know I REALLY identify with the "scanitis" (that's what I call the worry-disease we all get at scan time). I've got scanitis this week, too, as my hubby is getting his first set of scans as I type, and another tomorrow, with results on Friday. I've just decided there just isn't anything to make it go away and we just have to "stress out". LOL! Not a good response, huh? If you have a pill for "scanitis", please mail some to me via FedEx. Of course, you know I hope and pray that all goes well, and I hope you got some good laughs this morning in Just for Laughs. Loveya, Peggy

Tina, I wish you and Charlie all the best! Isn't it exciting to grab onto something that gives even more hope. Have a safe trip and we'll see you when you get back. Love, Peggy

Thank you, Ry! Grumpy: This is such good news!!! I am thrilled to see this post. I think the heart and truthfulness of a child can change the world. Give that granddaughter a big hug from Peggy. So glad you are feeling better - and, this is just a little ahead of time, but MERRY CHRISTMAS!! Love, Peggy

Oh no! Oh no! I am devastated over this. Dave and I had so many wonderful conversations in PMs. He was so hopeful, so optimistic and fought this disease with a vengeance. He gave me many tips and things for my husband to try - all of which I shared with my husband and we talked to the onc about them also. Dawn, I am heartbroken, and I am so sorry for this great loss! May God hold you close, as well as Dave's wife and the rest of his family forever. This is a sad day! God bless you, Peggy

Oh Renee, I am so sorry. Even though we all knew this was coming, it doesn't make it any easier. I physically felt my heart sink when I read this. May God hold you close in the days ahead. Love, Peggy

Betty, My husband had this as well, at least the fever. He had a constant fever of approx. 100.5 to 101.5 for 3-4 weeks after radiation and chemo. Antibiotics didn't help, tylenol would bring it down, but it would pop right back up, and he just felt lethargic with the fever. They finally put him in the hospital and did all kinds of blood tests and blood cultures and never did come up with a reason. He was in the hospital for 3 1/2 days, and about 1 week later, the fever just went away. The onc just assumed it was associated with the radiation. He said it wasn't uncommon to develop a fever after radiation, but he got concerned when it lasted so long, especially since it was getting above 101. He had us write down the temps at least 4 times a day and take them to him on each visit. I certainly don't know if this is the same situation as you are having, but that's what happened to him. Love, Peggy

Dolly, My heart is aching for you. I have no special words to share. All I can say is that I am so sorry for your pain, and I will pray that it will get better for you sooner rather than later. All my love, Peggy

Cindy, Have a great time! Did you buy the stun gun? Let us know when you get back and how it went. Love, Peggy

Shawn, I am so sorry to hear of this great loss. I think at your age, a loss like this is particularly difficult, and I am so sorry. Your mother was a very beautiful lady. I can only imagine how much you loved her and how proud you are that she was your mother. It is so admirable that you gave up your schooling to stay home and take care of her. I'm sending you my deepest sympathy, both for this loss and for the loss of your dad. I pray that God will hold you close and help you to get through the days ahead. Maybe you can stick with us for a while and let us help you get through it all. We're here for you if you need us. God bless you, Peggy

What Fay and Lisa have had to say is true for Fay and Lisa and many others, however, it is not applicable in every situation. Many patients will not speak up for themselves, will not ask questions, do not want to know and will not pursue problems without the intervention of families. This might be because they are too scared, don't want to know the truth, are ashamed, or shy. They might not be incompetent, but not sharp enough to know or understand everything that is being said, and in MANY cases aren't capable of keeping track of appointments, treatments, medications, etc., or for other reasons. Joe, I personally think that you need to be very careful what you do talk to families about for legal reasons and in order to protect yourself, particularly in light of the new HIPPA laws, but I also realize that many times it will be a judgment call for you. Fortunately, in our situation, the staff asks the patient on the first visit who they can talk to and it goes right in front of their folder. There have been frequent threads/posts on this board about most patients needing an advocate. I agree that some don't, however, it's a good idea to find out right from the beginning, especially since the patient could become quite ill at a later date. I think that by the very fact that a patient comes to a consultation with 10 family members (or any number) for a consultation with you, that patient considers his or medical condition open to those people. Peggy

Nina, Your fears and concerns are completely understandable. I recall recently that you posted your concern that you have reached some point, or are about to, where reoccurrence is a possibility. I, too, have noticed that Cisplatin/V16 have been used mostly for SCLC, and as you approach your new scans, I can see why you would be wondering if you have had all the right treatments to keep you NED. I don't have an answer, but it would "seem" to me that if those drugs got you to NED, then they were probably the right treatment for you. My husband is approaching new scan time, too, and I can identify with your anxiety. Unfortunately, I don't think there are any magic words to reduce the anxiety - if there were, I would use them on myself. LOL! Anyway, do the best you can to keep your mind busy and on other things, and I will try to do the same. All my love and prayers, Peggy

P.S. The reason I think they should be told about the "cure" is because it is factual, whereas prognosis/amount of time left to live, is only a guess. And, of course, my comments would only apply to the ones who cannot be cured - I realize there are some, especially early stage, that can be cured forever. Thanks again, Peggy