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Elaine

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Posts posted by Elaine

    Totally new to this in every way.

    in CAREGIVER RESOURCE CENTER

    Posted

    Ben

    You are the age of my children, who are 23 and almost 25. You show a great deal of maturity along with your concern for your mom.

    I know your mom is pretty upset now, which is probably a way understatement and she probably hates that she needs you in this way since she knows how young you are and what that means cos she was young once, too.

    I don't have any answers, as all people are different and all cancers are different. Help her in whatever way you can. Maybe she will let you go to the Dr with her so you can hear what he or she has to say. Or maybe she can take a recorder. Ask what she needs from you, and if she says nothing don't really believe it. Also help your dad. I hope you also have people who can help you, too. We here can do what we can.

    There is a lot of hope here and support for the times when things go roughly. There are also some great stories of long term survival. The Doctors really don't know how long anyone has; they are only guesstimating. Whether a person lives a day or years past their diagnosis is not really a matter of his or her will, only, but based on so many factors.

    If you have time, look around in the archives and you can learn a lot.

    I have so much empathy for you and wish you nothing but strength for the coming fight.

    I so wish you didn't have to be here and that none of us did.

    My love to you and your family.

    elaine

    Double visioin

    in GENERAL

    Posted

    Eileen

    Sounds like good times and I am keeping my hopes and prayers for the best of results.

    It seems like a long wait to me, so I will wish you a tranquil wait.

    Let us know.

    Cat, I am laughing at your irony. Well more like a big ol grin.

    elaine

    Shoulder Pain

    in SCLC GROUP

    Posted

    Rachel

    Don't have a clue about the pain. So many things can cause shoulder pain--even the abdomen can present there. Darn it. But I want you to know that I am thinking of you and sooooo happy you get to go to Michigan. Have a blast for all of us.

    love

    elaine

    Brain met symptoms?

    in GENERAL

    Posted

    Cat said what I wanted to say much better than I could have. It may be something minor, but I am glad you are having it checked. Brain mets are such scary things because they can be silent or they can present with a multiude of varying symptoms depending on location.

    I am sending you bundles of fortitude as you wait for the scan and the results.

    love

    elaine

    Iressa poll

    in NSCLC GROUP

    Posted

    Amy

    Thanks. First I need the RX and I doubt I am going to get it. Mainly because my onc knows I can't afford the Iressa and says that unless I have done other chemos or I am near death or severely disable because of my rx, the drug company won't consider it as medical emergency. I have tried getting some prescription help in the past and was not successful. It seems we are just above the guidelines; IF I were taking all the prescriptions I probably need (EXCLUDING IRESSA), we would have NO income, which is what is frustrating.

    Oh well...

    Thanks for the info. I will keep all the cases of people who have not had chemo or rad and stlll get IRESSA together so I can try to convince the DR. I also read where medicare is now paying for IRESSA; am I wrong? I thought I read and posted a news article that said that..

    Because of that, I thought about petitioning my HMO and requesting it because if Medicare is paying for it and medicare has no prescription coverage, then the HMO should also even for patients without RX coverage. It isn't fair that some people can't have a treatment just because it comes in pill form and not drip form. I think in the end IRESSA is actually cheaper than chemo. Not all oncs like it because they don't get a piece of IRESSA. Much of their incomes come from buying chemo drugs at lower prices and then dispensing them, from what I have learned. I am not saying this is what is forefront in most oncs minds, but I do think it enters into their minds--

    thanks

    I was raised 12 miles north of Kansas City, so you are in my hometown. Isn't it a great place????

    love

    elaine

    Elaine.

    One Day at a Time (repost)

    in GENERAL

    Posted

    Dean:

    OK so stress and pain have me a little grumpy, but I am going to post any way--because I dont think my grumpiness has anything to do with why I am posting because I have thought a long time about this (since the first time you posted it, I think). Maybe my grumpiness and depression are giving me the courage to write this, I don't know.

    A couple people and I have thought about making a list of things NEVER to say to someone facing a terminal illness. The phrase "One day at a time" would probably not be on the list, but it might come close.

    I agree with all that you say except for one thing. What you wrote doesn't take into account the future beyond the immediate future--in the future I would call hopes and dreams. That is the future for which I, and I expect many other cancer patients AND their family members grieve, even as we fight with the weapons of hope and medicine and prayer.

    Maybe it's a woman thing, I dont know. But for me, the future usually meant further out than the next day or so (To be frank, in my mind, the next day or so were days I included in the present) --maybe because as a mother, I had to think more closely about my kids and if they were going to be able and ready to face adulthood....

    Certainly, I never had any control over any of the future, but like you said I had some influence.

    I think I know what you are trying to say, and I am not disputing any of it. Heavens I know better than that, now, lol, but what I, and I know others, too, feel so sad about are the things beyond a future I can almost touch. For me it is holding a grandchild or watching my kids become the adults they are perched to become. For others, it may be seeing a child graduate...

    So Dean is the answer I am searching for something like: let it go. Is that what I need to do? If so, how?

    Maybe this post has nothing to do with your post. I don't know. Yours sounds good and mine sounds depressing. It's just that I always did live for today; I don't know how anyone lives otherwise, but I always tried, when I was at my best, to live it so that it helped build a better future. I most certainly was not always successful at that! I wish I had been better at it.

    So then someone might say this: Well, all any of us have guaranteed is today. Which I think WOULD go on a list of things NEVER to say to a person facing a possibly terminal illness. Sure none of us have a gurantee, but let's get out the accuary tables and decide which group has a darn better chance of living a full (in years) life. To me, and others I have talked to, the phrase seems to minimize our feelings of grief even though we know no one means to do that by saying it. I repeat: we know no one means to hurt us by saying it.

    Which brings me to my final thought: you never did post about how one gets over events of the past. I kind of think you promised, lol. Maybe your thoughts on that would be of help to some of us.

    Please, I hope no one half reads this and thinks I am arguing with Dean. I am trying to discuss this with Dean and any others. I am only trying to help anyone who wants to read this to come to peace with the past, present and future. I DO think it is possible. I really do.

    I love your posts Dean. They often give me something to think about.

    love Elaine

    My mothers funeral

    in GRIEF

    Posted

    Gayle

    Just thinking about that song makes me cry. I hope your father is holding up as well as can be expected.

    So sad for you all. I hope you glory in your memories of happier times.

    elaine

    Iressa poll

    in NSCLC GROUP

    Posted

    Hebbie,

    I completely forgot abuot that. The reason I ask is because my Dr has refused to write rx for it since I have not done other chemos. I doubt if I could aford it since I don't have RX insurance, but I thought I would try it and if it seemed to work then I could petition the drug company or something for some help.

    Anyway that's why I asked because I need some "ammo" to try to get a rx.

    thanks all

    elaine

    Iressa poll

    in NSCLC GROUP

    Posted

    Andrea

    I hate to sound really stupid, but why is she on Iressa, anyway. Isn't she NED. Is there some study that shows it stops recurrance? I am not aware of it. Your mom had chemo pre surgery which should have got those wayward buggers and didn't she have rad pre and post surgery? I cant remember lol. Anyway, just wondering, why Iressa, since what it does do doesnt seem related to your mom's standing.

    I may be wrong and I hope someone corrects me, if I am cos I hate passing on rotten info.

    Sorry to be so bold!

    added: I guess I can think of a theory where Iressa might fit into your mom's situtation but I will let others post to see if I amo on right track. Plus, I also thought there were more "proven" chemos if trying to halt reoccurance is the goal.

    love

    elaine

    chat night, 7/20

    in GENERAL

    Posted

    David:

    I hate to inform you but this IS chat night. LOL.

    But you Michiganders and wannabees can have your own room (IF Ry says it's ok) Pls don't fine me, RY, for overstepping and giving people permissin that I have no right or business granting! :lol:

    I was just trying to tell David what you might tell him. Something like: DUH.

    elaine

    The Michigan Bash!

    in GENERAL

    Posted

    Ry

    You gonna have a web cam for the rest of us poor sods who aren't even wannabees?

    Kicking it up to the top for David. Sparing him the energy so he can wipe you all out this week end.

    elaine

    Escozul

    in LUNG CANCER IN THE NEWS

    Posted

    I read your link and the verdict does't look all that good, huh? As far as cure. But cure isn't something late stagers are promised here either, soooo .... Keep us posted if you find out more or if you give it a try.

    elaine

    Dave S is gone (see the bottom portion of this thread)

    in GENERAL

    Posted

    Dave

    I am so glad to hear from you. And twice, now! Thank God for no brain mets and for mostly stable disease! I, too, am facing a great deal of emotional fragility, right now, and I am glad to hear that it can be controlled to an acceptable degree. Sometimes it seems otherwise as we spiral downward.

    You do know one thing about the IVC--you know you felt and feel better--with less respiratory symtoms so it was a success and doesn't look like a great deal of progression occured.

    I really missed you and wondered how you were. Glad to see you back.

    But I know it's sometimes too much to come here.

    love

    elaine

    Oh my how much fun is too much!

    in GENERAL

    Posted

    David,

    I loved the story of your day with the boys. The pride and excitement you felt jumped off the screen. YOUR day made MY day, yesterday.

    Thank you so much for showing your strength in the face of adversity.

    I can't even tell you how much I appreciate your posts.

    I wish you many happy days ahead.

    elaine

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