lainy
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Jeff< FYI: Doctor said they cannot stop the radiation as it was programmed to what was needed. He said there will be a rest between this and the cyberknife.
Oh well, only 6 more. He also said there is absolutely no burning anywhere so that is good. Thanks, just wanted to get back to you.Thanks and I called Teddy and told him what you said and to ask the doc about it. No pain, some discomfort in the “belly” but not too bad. Mostly the exhaustion, no appetite, food tastes funny, burping all day. So much for no side effects, eh? One last question. Do you remember at all how long it all took for the tiredness to wear off?
WOW, Jeff. Total will be 5 weeks 5 times a week and he has 6 days to go.
Its where the duodenum used to be. SO I guess near the pancreas etc.
Teddy is going in this morning, should I tell him to ask the doc if he may have had enough???? You know, you feel if you cut it short the job won’t get done?
How long were you getting effects after done?Heather and all you other great people, if you click on email under our names it will bring up and email to send it to. I have already got several by people who did that. Or just send it to …..lainy@wbhsi.net, thats for the Caretakers.
I didn’t know we were neighbors. Do you use a doctor in Phoenix????Dear Pauline, Everything you feel is what I am feeling already and we are not at that dire point yet. Anthony’s life was taken out of your hands when he was diagnosed with this monster. There is NOTHING more you could have done. To be there with him, to be a loving wife and partner, you did the best you could do and thats all anyone can ask. Teddy is always apologizing to me for the way he is now and it breaks my heart. What’s worse is I know down the road what he is really going to have to face. Everyone keeps telling me what a fabulous job I am doing and if they ever needed an advocate they would call me. Yeah, well, they are not walking in my shoes or yours. Family and friends come and go, they see a smiling Teddy but they don’t spend almost 7*24 with him. You must know that you did all you could and in the most timely manner you could.
For those who have already gone through the worse, could this painful aftermath be that our burden has lifted and it has left a “Caretaker” void in our lives? Not just because it was a loved one but we were so busy we had no time to think and now it is just emptiness. I don’t know I am just rambling on here, one of my down days, I guess. But as time goes on you will find the strength to remember the good times and to carry on as that is what an Anthony would want. I know as I am married to a Salvatore!Carrie, go to Envita Scottsdale and read about it. I am sure there are other places in other states also. What they do is extremely heavy doses of Vitamin C
intravenously. I understand that the one my daughter’s fiance goes to here is treating a CC patient as well. I would go to Naturalpathic North Carolina on the web and see what comes up and call one of them for further information. Good luck!Not sure where you reside, but in Scottsdale AZ there is a clinic called Envita. They work with the doctors but are not approved by Insurance Companies.
My daughter’s fiance was diagnosed last summer with Lymphoma and went to the clinic in conjunction with Chemo. He is now in remission. He also found a Naturalpathic doctor who does the same thing for half the price. He has gone totally organic and feels and looks the picture of health. While this may not be for everyone it is certainly working for him.Charlene, my heart is just breaking for you, so this is hard to say. I believe its time for some tough love. You have yet a hard time in front of you and if your husband refuses to have Hospice it is making it even harder for you. I think you need to sit down and explain to him that you cannot possibly continue without hospice. That you will not be able to continue this way and may not be able to help him through to the end. You need every ounce of strength you can muster physically and mentally and the time is now. Easy for someone else to say, yes? Wish I could help you but all we can do is suggest. Be strong! We are all thinking and praying for you.
Hello Jeff! By the way, I think all us girls owe your wife a huge thank-you for sharing you with us the way she does! You are the “other” man in our lives!!!
I went a step further this morning and I e mailed friends and family and asked them if they would like to just write a few words and I would combine their feelings in one letter as well.It might be a nice outlet for them. Taking it to the limit one more time. We love ya!!!Good Morning!! CC is a well known secret to all but us who are Patients or Caretakers. We have decided to send as many letters as we can get to the Oprah show and maybe, just maybe she will invite us to come out of our bile ducts!! We are trying to get the point out there that this is an evil monster that is being neglected. If you are a patient e mail your letter to Sophie and if you are a Caretaker email it to me. We have a September 15th deadline and am wishing and hoping for at least 50 letters. Everyone out there this is your reminder as well for today. The letter should be no longer than 1 page and state your trials and tribulations. Please join as it will make you feel better to write it down and in the end we hope it will benefit all of us!!
Sheryl, welcome, and in case you did not realize it, you are already a great survivor! Everyone on this site is a gold medalist and has learned to fight for what they need. My husband had a PET Scan the end of June and fortunately the insurance company foot the bill! What they turned down was cyberknife surgery which would have only been a 3 day procedure instead of IMRT radiation which he is going through now and taking 25 days. Such wisdom. There are some very knowledgeable people on this site and do not be afraid to ask any questions. Don’t loose faith in your body as it pulled you through a very rough time. Can’t tell you why this is happening to so many wonderful people and yet our group is small which is why there is not much being done in the way of research. I would suggest getting busy with other things. My husband has been through hell but at 75 he is still working 3 days a week to keep his mind busy. Glad to hear you have some great support! Stay strong!
Pauline, my sympathies to you and your daughter. By all means talk to your
husband, he could be waiting to hear your voice! Remember he has only left the room and where ever you go he is right there with you, in your heart. The fact that you did not practice a religion does not mean God does not hear you and God knows what is in your heart. When you are up to it you can help us all by writing your letter as a Caretaker and sending it to me. Sophie and I are collecting letters to send to the Oprah show and if we are lucky enough to have her do a show on CC we will have brought this monster out of the closet so to speak. In the meantime perhaps you can find some peace knowing that what you and your husband had was beautiful and you created a wonderful daughter who also needs your support now as well. Prayers and thoughts go out to you and your family.Good for you, Jeff. What an astounding feat you have accomplished! It sure sounds like you had good parents but your Grammie for sure is living on in you!
