lainy
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Oh, my goodness, Louise you are quite a story!!! The kind we love. We are so glad you did find us. I found this site January 13, 2006 and it was not that old at the time. There were like 100 members and look at us now. We hope your good news continues and I think we should call you Awesome Louise!!!
Hello Diane and welcome to the best little club in the world that no one wishes to join. Sorry you had to come here but oh, so glad you found us. You are at one of the very best Hospitals and if something can be done they will do it. I know this is all so very scary in the beginning. You an learn a lot by reading our posts and don’t be afraid to ask questions. You have a great attitude and that is half the battle. Please come here often and ask away or just vent if you feel the need. We are all here to help each other.
Hi Kris. I can’t break dance but I could cut a mean rug with the Jitterbug! I mean cut it! Hey, girl, with your attitude you can’t loose. You are in charge, you are positive and redheads will not be told they can’t do. Thinking of you all the time and hoping for the best.
Damn, Jamie. Sorry for the word. You are entitled to the biggest pity party ever thrown. You sound like a fighter so I would suggest talking to the family and then decide what YOU want to do. I guess one option would be to at least try the cocktails again and see in 2 months what happens. You can always go off if they are not working. How dare he say, be realistic. You tell him you are realistically optimistic. If he doesn’t want to fight with you, if that’s your decision then find someone who will. I’m mad right with you. In some cases anger is good you know, as it provokes you to fight!!! Please keep us posted, I know you will.
We are so very sorry about Fiona’s passing. She is now in a much kinder and gentler place. I love this little poem and maybe it will help ease the pain:
If I should be the first to go,
And leave you alone, My Dear,
Let not your heart be lonely,
Nor in your eye a tear.Grieve not for me, my darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.To join me in our sanctuary,
And ne’er again we’ll part,
Grieve not for me, my darling,
I live within your heart.Take joy again in living,
As you did in years gone by,
God knows of what He’s doing,
And not be questioned why,Grieve not for me, my darling,
My life with you on earth,
Each moment filled with happiness,
And love so few be worth.I’ll be waiting for you Sweetheart,
Where skys are ever blue,
With eager heart and open arms,
Patiently for you.Grieve not for me, my darling,
May faith and my love keep
Your soul filled with contentment,
Eternally I sleep.Dear Barbara we are so very happy you were so inspired. We attended a convention here in Phoenix and it was amazing. This whole Board is amazing but I know what you mean about “the girls”! I have not had the good fortune to meet Stacie yet. But Marion has Passion and Mission written across her forehead. Thank you for attending and as usual a big hug and thanks to Stacie and Marion. You all ROCK!
Many prayers and good wishes heading your way, hope you can feel them.
Please keep us informed and today I will have Teddy light an extra candle at Mass.Jamie, NO one on this board is a wuss, everyone deserves a medal of honor! That scar tissue can do lots of things. It caused Teddy’s right ureter to close and he now has to go in for stent exchanges to keep it open. It has also now caused 3 hernias in the stomach area. I think you all go through too much to have to sit around and second guess what may be happening. Glad you are getting a scan so you can rest your mind. They scheduled Teddy yesterday for a PET Scan for June 16th (to check on results from his cyber knife) and while we get all nervous before the Scan when the results are good that is the best feeling ever. Good luck.
Danielle we are so very sorry to hear of the turn in events. Keep thinking about that walk in Central Park. Our prayers go out to you both. Teddy lights a candle every morning at Mass for our CC friends. CC doesn’t come with an expiration date but stay close anyway to give each other strength.
It is scary isn’t it? I suggest you take a long walk or sit in the car where no one will hear and let our some good screams. You will be surprised how it will help. We are praying for some good news.
Hi Carolyn and welcome to the best little club in the world that no one wishes to join. Glad you are doing so well and yes, we all know the CC stress all too well. My husband had a Whipple Surgery almost 4 years ago and his doctor kept a watchful eye on him by ordering LAB work every month and a CT Scan every 3 months. By doing this we caught the little monster when it reappeared last April where his duodenum used to be. See, its a sneaky little devil and you must keep a very watchful eye. They did get it all again but the regime will continue forever. The key here is catching it early. Honestly if it was me I would want LABS monthly with CT Scans every 3 months. I know everyone is different but to be 1 step ahead is to be armed and ready!
I am sending you as many good vibes and the good vibe box will hold! The good news is everything is looking up not down! Enjoy your company and send us some more good news!
Paula, that is good. Every family has one person with the broadest shoulders but this is one disease that needs many shoulders. Its going to be a long journey and you need your strength and the help of others, if for nothing else to share what you are going through and then somehow the burden is lifted just a little. Sometimes it helps just talking something out and then boom, there is the answer. You are not admitting that you cannot handle it, rather you are saying this is the story and I need you to understand what is happening and also that there may be days I want to talk and there may be days I just don’t want to. Let them know that a lot of understanding is what you are seeking now. Good luck.
