lilyjohn
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Posts posted by lilyjohn
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I'm in agreement with Dean. Throw it right back at anyone who says that to you. I've seen Dean say before that you ask them where they got their God Licence. That's the best way to look at that kind of looser. I'm a firm believer that that attitude from doctors is in many ways just as dangerous as cancer and as cruel. If they spent as much time trying to help keep a patient's attitude positive and looking at some of the other things that help in the fight against cancer they could do a lot more good than harm.
God has the only say about how long any of us should be here, that so called doctor included!!!!!!!!!!! Just stay positive and keep fighting. Do all you can to help yourself and avoid loosers like that. Come here for support whenever you need it. You'll get a lot more here than from someone like that who writes you off from the beginning.
I don't know why it is but there are a lot of doctors who can't accept the idea that they do not know everything and there are other things available to try besides their specialty. Kind of like the way they are about nutrition and exercise and other alternative treatments. All of your life they tell you to eat right, exercise and keep a good attitude and less stress. Mention the word "cancer" and they do a backflip away from all of the advice that they gave before. Is it just me or does something sound wrong with that?
Just remember that there are some medications that doctors don't give and you can get those here. They are faith, hope and above all love. The best combination of medicines you can find anywhere. Hang in there and keep us posted on your progress. Lillian
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I don't know much about accupuncture Annie. I just wanted to say that I have been thinking about you and Tim. I hope he continues to improve and feel well. The wedding sound like a nice thing to look forward to. Take care and bless you. You will be in my prayers. Lillian
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Thanks Dean
I thought I was the only one who could not read Spchienglanese!!!!!!!!
or whatever those instructions are written in!! Once again Ann thanks for the encouragement. Love you both keep up the good hearts that you have . Lillian
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Sense I have been spending more and more time here at my computer I decided that it is time to get a more comfortable chair. Especially sense my back and neck have been telling me what my mirror has been for a very long time. I am NOT sixteen anymore!!
Yesterday I went to the mad house (WalMart) and found just the right chair. It has all of the required things like seat, back, casters and of coarse arm rests. I left it sitting in the box all night. This morning I finally got the nerve up to tackle putting it together.
I took all of the pieces out and lined them up on the floor then I read the instructions. Looks easy enough! I also read the warning to keep the small screw caps away from small children and to tighten the screws once in a while so you don't take a butt flop on the floor. There was NO warning that said "you have to be a super human contortionest to get the arms back and seat lined up so the screws fit the holes allowed for them." After rolling on the floor , nearly standing on my head and realizing that I was using words I never knew before, I finally got it put together.
Now my little dog Misty is half wire terrier, WHITE half wire terrier! Now my brand new BLACK chair looks like it was in the direct line of a snowblower and my BROWN pants look like I just walked through a spun glass factory!! I did get it together tho but damn they should have put that warning in the instructions!!
It really is nice and almost perfect. One of the screw caps won't fit because the screw is just a little off center but I don't mind because every time I see that little shiny screw head I will remember why they make things that are ALREADY ASSEMBLED!!!!!!!!!!!!!!!!!!!
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Thank you so much! That is just so beautiful I have tears in my eyes. The places shown remind me of a happier time when I shared the beauty of summer and fall with my Johnny in Washington and the winter scenes are so much like my new home. It was just so wonderful to see and remember the better times. How could anyone see those things and deny God? Lillian
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I don't know you Marlon but you and your mom certainly have my prayers.
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God Dean the whole damn system sucks!!!!!!!! I really hope your congressman can get things moving. Sometimes just one person in a position of power is all that it takes.
Years ago my brother had a masive heart attack. The doctors were surprised that he lived through it but he did. Trying to get his social security was an unending nightmare. They kept telling him that he could find work in his condition. The fact that he was so sick and that he was not able to read or write were never considered. He made one call to his congressman and what do you know suddenly he qualified! You just never know until you try.
When Johnny died I vowed to work to change this lousy system that we have to depend on. Seeing what you are going through strengthens my resolve. I can't help but wonder if that is not why we are all here now on this board supporting and sharing. Everything has to start one step at a time. I hope that all of us together can make so much noise that sooner or later someone will listen and begin to make the changes so important to all of us. Hang in there and give em hell. You know we are all pulling for you. Lillian
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Dean
You keep mentioning the VA. I understand that they are in charge of your care. I have to ask are you on Social Security and Medicare? I know from working in the assisted living home that medicare can help with the scooter. I saw one lady get one for very little money out of her pocket. I also know from my experience with Johnny that medicare pays for home oxygen. Medicaid or Medical should also pick up some of your expenses. Those are a few things that you should question that congressman about.
I will tell you also that we had several people on hospice. Nothing was done for them without going through hospice. They handled medication and made the decision when a person needed hospital care. They also provided oxygen and many medications. There are many things available to help you. I know this has got to be stressful and zapping your energy. Try to get that congressman to look into these things for you. You definately need an advocate so you can relax and enjoy your life.
You are an inspiration to so many of us. I hope to see you around here for a very long time. Who knows you might still be the one who teaches people how important attitude is! God Bless you and I hope that you find the help and peace that you not only need but deserve.
Lillian
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What your mom is experiencing has to be frightening. I have no idea what the cause could be. I do know that Johnny experienced a vision problem. His vision got worse. He had trouble seeing the hands on his watch. I'm not certain but I seem to remember being told that vision problems could be a side effect of the chemo. He too was on Taxol/Carboplatin. It might be worth researching on the web as well as asking for another opinion.
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As many of you have pointed out recently I seem to no longer have the anger that was so much a part of my life just a few short weeks ago.... I believe there are two reasons for that. One is being able to come here and share both my pain and my progress.. I also know that moving to this new and beautiful place has played a major part in my sense of peace.
I recently got a letter from the chaplin that Johnny and I knew in Washington. We have exchanged many letters sense I left there and had more than one exchange of conflicting ideas. I guess my habit of many words either overwhelmed him or he has seen the error in his thinking!!!Never the less we are still friends and recently he sent a letter stating that he sees that I am starting to heal. I wrote back to him trying to explain what I am feeling now. I thought that I might share it with all of you. You have been with me too in my long journy. So here is my take on my situation right now. I can not say that I am happy. Happiness is just a fleeting moment in time but hopefully peace can last for eternity. My explaition follows. Thanks for putting up with my rambles. Lillian
You say that my latest messages show that I am starting to heal. I don't really believe it is healing as much as acceptance and renewal. Time is no measurement of healing any more than it is of love or pain. Time is a man made thing not a God made thing. I still have many days that the pain is so bad that I just want to pull the covers over my head and forget that I am alive. Fortunately those days are becoming fewer.
After Johnny's death I was so lost. In 6 months time I moved away from my children and grandchildren who had always been my lifes focus and my reason for the life I led. I found happiness like none I had ever known with Johnny. Even the worse days of the anxiety we had something between us that just kept growing. Then in just 5 short months he was gone. He died at a time when we had found new hope for his treatment and at a time when his physical health was much better than it had been in years. I had many questions and no answers. I also have no legal rights to get those answers and have came up against as many or more brick walls in my attemp to get him justice as I did to get him help. All of those things in such a short time period left my soul bruised and battered. I didn't know how to handle either my pain nor my anger and sense of injustice. Both of those things were stonger than I had ever experienced before.
Moving here was the best thing I could have ever done. It costs so little to live here. That is true financialy as well as in other ways. I still have concerns about finding employment but I know that will come in time. I can afford to wait for a while. I need this time of renewal and peace with myself. There is no charge here for the things that make life easier. It costs nothing to see the blue shy or the mountains covered with evergreens. There is no charge to see or hear the creek as it bubbles and at times crashes on it's way to the sea. The price of seeing a deer is only the effort to open your eyes. The cold air invigerates more than a barrel of vitamins and the beauty soothes the soul more than any massage or expensive resort. Life here is lived one minute at a time. There is no rush nor any thing to pressure me. I have learned to do something that had escaped me for most of my life. That is to relax totaly once in a while.
So I say I have not healed but I am renewing. I have accepted my fate instead of cursing it. There are things that I know that I never did before. Faith is a wonderful thing. It can lift you up and at times it can cause a lot of pain as it did when I felt that my faith had betrayed me, and when Johnny was frightened by his because of the way the Bible had been taught to him. I no longer believe in God I Know He exists and is always with me. I know too that tho I can not see and touch him any more that Johnny is still with me. Too many things have happened sense he died that can not be ignored. Things that tell me he is with me and always will be. When the bad days come and I feel that I just can not go on another minute with the pain and loss inside of me, something will happen to let me know that both Johnny and God are by my side. It is that Knowledge not belief that keeps me going and lets me live and learn. Later in my writings I will share some of those things. For now let it suffice to say I KNOW and BELIEVE and those are the things that help my soul and spirit to renew.
Bless you and yours in this new year. I hope your health and that of your daughter as well as your other loved ones will not only stay stable but improve. If you ever head south into California on Interestate 5 stop by to see me. My home will always be open to you. My larger home, this beautiful area, will welcome you with serenity and peace!!
As always your friend Lillian
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What a beautiful way to discribe what we feel and hope for. Thank you. I hope that your loss will be eased a little knowing this. Lillian
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You've got them Ginny. Got my fingers and toes crossed too. Best of luck and think POSITIVE!
Lillian
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The only thing that I would worry about is her being too sleepy or groggy to drive. With chemo they often give drugs to ward off side effects. One is a generic form of Benadryl. That can make a person very sleepy and groggy. Driving in that condition could be dangerous. Why don't you just ask your mom if she feels either of these things. Tell her it would make you more comfortable if you know she is safe on the road.
If she says no and that she can handle it back off. She is already facing a situation that she feels she has little control over. Let her keep control of at least that one part of her life until she is ready to ask for help.
Hope it works out well for you. I have a lot of the same questions about staging. You often get two different answers and end up more confused than ever.
Lillian
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Pam
Reading your post took me back to so many of the days I have lived through. I too have felt the anger and asked the questions. I have lost my faith and regained it more than one time. Pain often makes us question not only our beliefs but ourselves. No one knows why we have to endure so much pain. Who choses who will beat this disease and who will not? I don't think there are any real answers to those questions.. As for believing in God, I have never doubted His existance, just his place in my life. I believed that my faith betrayed me. On the bad days I still do but that is only momentary now. I don't believe in God I KNOW he exists.
Our image of God is just that an image! We see Him one way and expect Him to always be there and give us what we ask for. There are times that what we ask for just doesn't go with our lifes plan. When that happens it is easy to blame God. We ask why didn't He answer our prayers when we have so much faith. The answer to that question I have come to believe is that he did answer my prayers. Instead of yes his answer was no! Why? I don't know the answer to that any more than you or any of the others here do. I just know that was the answer.
Life can seem so unfair. I have felt that everything has been taken from me. It has taken me over a year to realize that tho much was taken from me I have gained so much too. Cancer teaches you to fight. It makes you aware of a strength that you never knew that you had. In time it also teaches you to Know God. I know that death is NOT the end. I have had too many things happen to assure me that life goes on just on a different plane. Think about seeing that picture of your dad. When you saw it you felt so close to him. He was once more alive. That was not a coinsidence. It was your dad letting you know that he is still with you. It was his gift to you a gift that he knew you needed at that time.
The fear, hope and pain come in cycles. Sometimes those cycles last for days, sometimes only minutes. Each cycle is a new period of grief. It is those cycles that take us through the hardest times. If we did not feel the pain, fear and anger how would we appreciate the love and the hope when we feel it?
Don't ever be ashamed or beat yourself up for those feelings. They are normal feelings that go with love and loss. Without them we would not be human and there would be no need for God. He finds a way to make us know and He brings us through those bad times. We are all here now among friends. It is hard to have gone through what we have that brought us here but it would be so much harder had we never found the support and loving people here. Cancer robs us but the battle rewards us in ways not to make up for our loss but make us appreciate the love that we were fortunate enough to have.
Lillian
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Hey Bob sense I've become aquainted with lung cancer I learned to cuss. Never said a cuss word in my life that I can remember. Some things just can't be handled any other way, so cuss as much as you want. It cleanses the spirit or at least makes you feel better for a while. Best of luck to you and hope that soon you will be able to say"remember when I had that scare and cussed so much? Sure is nice that it turned out to be nothing. I wonder if the cussing did it?"
All kidding aside you are strong and you will make it through this. Just look how far you have come already. Lillian
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1. The best way to get even is to forget...
2. Feed your faith and your doubts will starve to death...
3. God wants spiritual fruit, not religious nuts...
4. Some folks wear their halos much too tight...
5. Some marriages are made in heaven, but they ALL have to be maintained on
earth....
6. Unless you can create the WHOLE universe in 5 days, Then perhaps
giving "advice" to God, isn't such a good idea!
7. Sorrow looks back, worry looks around, and faith looks up...
8. Standing in the middle of the road is dangerous. You will get knocked down
by the traffic from both ways.
9. Words are windows to the heart.
10. A skeptic is a person who when he sees the handwriting on the wall, claims
it's a forgery.
11. It isn't difficult to make a mountain out of a molehill, just add a
little dirt.
12. A successful marriage isn't finding the right person; it's being the
right person.
13. The mighty oak tree was once a little nut that held its ground.
14. Too many people offer God prayers with claw marks all over them.
15. The tongue must be heavy, indeed, because so few people can hold it.
16. To forgive is to set the prisoner free and then discover the
prisoner was you.
17. You have to wonder about humans, they think God is dead and Elvis is
alive!
18. It's all right to sit on your pity pot every now and again. Just be
sure to flush when you are done.
19. You'll notice that a turtle only makes progress when it sticks out
its neck...
20. If the grass is greener on the other side of the fence, you can bet
the water bill is higher.
You are richer today if you have laughed, given, or forgiven!
This is the day the Lord Has made;
Let us rejoice and be glad in it!
Our God is an awesome God;
He reigns from heaven above
with wisdom, power, and love;
Our God is an awesome God!
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My deepest sympathy go out to you at this terrible time in your life. I wish you the strength you need to continue on lifes journey. I pray that the love will sustain you when you are lost and lift you up so you can go on. My heart feels your pain. I have lost so many that I love and it never gets any easier. Lillian
"Every mans death deminishes me because I am a part of mankind" author: John Donne
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Beth
Sorry to put it so bluntly but his doctor sounds like the one who is the looser. That attitude does nothing for your husband. Have you thought about a second opinion? I think I sent you a pm about my (Johnny's ) experience with the carboplatin/taxol. It was really easy to tolerate. It also shrunk the nodules but he had NSCLC. Glad to hear tho that you have something started but I would check for that second opinion. Lillian
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The oxygen level in a person with normal breathing runs in the high 90s when tested with an oxomiter(On the finger) there is also a blood gas test that can be done. A person with COPD can have an oxygen reading of 90 to 95 and be considered normal. I suspect that cancer can cause a lower reading too. Having low red blood cells affects the oxygen in your system and often makes a person short of breath as well as fatigued. The problem with the oxomitre is that it can be affected by many things, nail polish being one of them. This test is used for a general idea. To have an accurate idea a blood gas test should be done. That will tell the balance of the blood gases in a persons system. This too can be inaccurate if it is not taken the proper way or the testing is not done properly. I sugest that if you have it done you make sure it is in a place that you trust as well as the one who does it.
I don't know about medical insurance but I do know that with Medicare a person's oxygen reading has to fall to 88 or below before they will pay for the oxygen. The concentraters work great at home and for travel I suggest the smaller tanks that can be carried in a small shoulder bag. Medicare will also pay for that if you qualify. I hope I have answered some of your questions.
I have done a lot of research on the subject but I am not a doctor. You need to take these questions to his doctor. Also type in blood oxygen levels in the search area of your computer you can get a lot of information there. Hang in there and try to keep your dad from getting depressed or over anxious those are the worst things possible for his health and his quality of life. He needs to have a good attitude to fight those things can rob him of that. A theropist trained in working with cancer patients would be a good thing if you have that option.
God Bless and get you through this bump in the road. Lillian
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Prayers from here too. God Bless you both and look after you. Lillian
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> 2004 Weekly Workout Routine
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> Everyone has made a resolution to begin an exercise
>program.
>Not wanting to harm this old body, I've devised the following:
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> Monday
>Beat around the bush
>Jump to conclusions
>Climb the walls
>Wade through the morning paper
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> Tuesday
>Drag my heels
>Push my luck
>Make mountains out of mole hills
>Hit the nail on the head
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> Wednesday
>Bend over backwards
>Jump on the Band Wagon
>Run around in circles
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> Thursday
>Advise the President on how to run the country
>Toot my own horn
>Pull out all the stops
>Add fuel to the fire
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> Friday
>Open a can of worms
>Put my foot in my mouth
>Start the ball rolling
>Go over the edge
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> Saturday
>Pick up the pieces.
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> Sunday
>Kneel in prayer
>Bow my head in thanksgiving
>Uplift my hands in praise
>Hug someone and encourage them.
>
>Whew! What a workout!
>
>Hope your new workout will
>make a difference for you!
>HAPPY NEW YEAR!
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>Author unknown
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Adam
Get your dad to the doctor now. Don't wait the time you have to wait on them won't be any less if you wait, but you will be getting the answers later by not going now. Oxygen is a good thing to have in case it is needed. There are just so many variables in this situation that you need to know what is going on and why. It could be the nodule or it could be an infection causeing the wheezing sound. It could aslo be caused from a medication.. Some medications cause bronchial spasm and that has a similar sound.. Also question the doctor about the oxygen use and the proper sittings. Too high a setting in some cases can make the condition much worse especially if the blood gasses are out of balance.
There are just so many reasons to see his doctor. It doesn't pay to speculate and ask questions of us here. We know some things but we do not know your dad's condition like his doctors should. Take him there, ask questions and get answers. Make sure you keep a record of everything told to you and get copies of test results. If you are not satisfied with his doctors explaination or you feel he is being too cold or not forthcoming enough get an other opinion.. Please what ever you do do it now. Time can mean so much and things can change so quickly.
One other suggestion. If your dad is having a problem breathing ask his doctor if he might not take Theodour. It is a long term medicaion in the treatment of asthma and makes it easier to breathe. I hope I have helped some. I wish I could relieve your mind and take your fears away but I can't. I can only offer advice and my best advice is find out now. If it is something you fear you have more time to fight it. If not then you can rest your mind sooner. I will be praying for you. I really admire the way you are there for your dad.
Lillian
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Lori
My heart goes out to you. I too know what you are going through. You have to have been there to really understand. Feeling lost and the feeling of waiting were two of the strongest feelings that I have had to live with. Even now over a year sense my Johnny died those feelings come at me out of nowhere. I lost my Johnny on December 2,2002 so I know how much the timing can make it seem even worse. Everyone is celebrating and you wonder "how can they when the world has ended?"
I won't tell you that the pain goes away. I think you would know that is not true. It just eventually gets bearable. First just for a few minutes and then later for a few hours. I had to get past the aniversary dates of his last days and death before I could acknowledge that I am not having a nightmare that this is reality. My reality. It was very hard to accept and at times still is. One thing I do know and you must remember. That is to grieve don't try to stop it. If you feel like crying cry. If you feel like being alone with your pain find away for a few minutes to do that. It is by the process of grieving and the pain that you will finally start to be able to handle what has been taken from you.
Like Shirley has said our loved ones are not gone, just in a better place that is close enough to us to still be watching. They know we grieve and our grief is bitter at times. They also know that we honor them with our grief. Being with other people is when I still feel more alone than ever. I find my comfort in the things that God has made. Things that man can not have made in billions of years. By letting myself feel the pain and that I am a part of nature that God has made I know that God exists. I know too that my Johnny is watching over me. You are never alone. When you get down come here. There are many of us who are walking the same road you are. Maybe we are a little farther along that road but many of the pot holes are still there for us too. We can share and I have learned that in sharing with those who have been or are in the same spot lightens the load of our grief.
God bless you and look after you and you beautiful children. You will always have a part of you love in them. Lillian
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Thanks Annie
You and your husband have been in my thoughts and prayers. I know you are having a rough time right now. I only hope that time proves to be on your side. You were one of the first people I heard from when I posted my first frantic post on this board. I will always be grateful. Now I have so many friends. I no longer feel all alone. Ann and Shirley and so many others have befriended me. I read and feel all of your stories, the strength and compassion I see here never ceases to amaze me. I just want to ask you one thing. When will we see a picture from you? Take care and hang in there.. Keep the faith and love with all you have it is what makes a difference and what makes life worthwhile. Lillian
New kind of face lift
in JUST FOR FUN
Posted
>
>> >>A woman in her forties went to a plastic surgeon for a face-lift.
>>The surgeon told her about a new procedure called "The Knob" - where a
>>small
>>knob is placed on the back of a woman's head and can be turned to tighten
>>up her skin to produce the effect of a brand new face lift.
>>
>>Of course, the woman wanted "The Knob." Over the course of the years,
>>the woman tightened the knob, and the effects were wonderful -- the woman
>>remained young looking and vibrant.
>>
>>After fifteen years, the woman returned to the surgeon with two
>>problems.
>>
>>"All these years, everything has been working just fine. I've
>>had to turn the knob many times and I've always loved the results. But now
>>I've developed two annoying problems:
>>
>> First, I have these terrible bags under my eyes and the knob won't get
>>them.
>>
>> "The doctor looked at her closely and said, "Those aren't bags, those
>>are your breasts."
>>
>>She said, "No point asking about the beard then..."