Somewhere....someone asked about Trametinib and I said I would ask my doctor about it. He said it is VERY promising. VERY.
Then I asked about Immunotherapy and he said "IT IS HUGE! HUGE!" and that it's going to do great things.
That's all I've got! Hope.......Pray......that a cure is on the horizon for all cancers!
Hugs~
Patty
Wednesday, July 2, 2014
Tuesday, July 1, 2014
Life on Suntone Beach..............
This morning started out at my daughter Amy's, for coffee with her, my mom, Debbie Weiler, my daughter, Jenn....and three of the cutest grandbabies ever! We have kind of started a Tuesday morning coffee group....or atleast until school starts and Amy has to go back to a real job....teaching!
This is our time to share what's going on in our lives, etc. After almost everyone was gone, I received a message from a girl from another state. Her mother also has IHCC. I am not going into details but I ask that everyone stop right NOW and say a prayer for Betty. That she fights and wins this CC battle. To Betty's family...I will continue to pray and please know you can contact me at any time.
I just checked the stats on my blog....I am at 101,855 hits. They come from several countries. People are looking at my blog from all over the U.S., Russia, Canada, U.K., Sweden, Germany, Norway, Saudi Arabia, Ukraine, and Estonia. A couple of those places I couldn't even tell you where they are on a world globe! ;-P
When I was diagnosed 3 years and 5 months ago, I prayed to God that he gave me time....time to see my girls all happily married, time to praise HIM for being so intertwined in my life after being diagnosed. I prayed to HIM that if He gave me more time with my daughters, I would praise His name every chance I got. I would "Pay It Forward" every chance I got. I would help any cancer patient who needed help...get help. Life is....all about time.
Well, speaking of time, my last daughter gets married August 23rd and I couldn't be happier with the man she has chosen to marry. So, with less than 8 weeks to go, invitations are in the mail and our list of To Do's is getting smaller and smaller. It's the 4th wedding after all...a piece of cake! Heck, after this wedding, I wont even be able to afford a crumb off the cake! ;-)
I visited my local oncologist, Dr. Dy (Dee) who was super excited with my reports from Houston. He said he is also amazed with my stability. He told me I was lucky and I corrected him and said "NO, I'M BLESSED"! I believe God truly is working thru me to give people hope, to let them know there is life with CC......there are a lot of factors whether you have a giant struggle or maybe you don't. Some say I have had a big struggle....but I don't remember it being that much of a struggle. I may not be eligible for a transplant but I am ok with that. I may not be eligible for a resection....but I am ok with THAT, too! I am A-OK with cooking that nasty big tumor in there so if it wakes up....we will cook it OR maybe do immunotherapy if it's approved. Wouldn't that be exciting. I might not get to be the poster child for Immunotherapy but maybe I could be right beside Amity on a billboard! I'm ok with that! For you who do not live close, you do not know that my granddaughter is on billboards in a few surrounding counties plus the county I live in for Richland Memorial Hospital. It makes me smile every time I go by one.....I just want to wave at her like she can see me.....AND, if I am the only person in the car, I do wave and smile at her!! Now the secrets out!
The RMH food program for chemo patients is still going great. Lots of greatful people who are hooked up to needles/tubes/I.V. poles and just enjoy some of Richland counties good food.
So, for now, life is good on Suntone Beach. I will be working a lot at the fair starting this weekend....and enjoying all the day lilies blooming, hosta's big as flying saucers, a momma raccoon in a tree hole with three babies... L.I.F.E. It is all around us. I have learned the hard way to enjoy it and take it all in. Respect it and give thanks!! These are my thoughts for today.....I am calm, I am blessed, I am thankful! I am a survivor!! Many hugs to my CC friends....and to the Cholangiocarcinoma.org website. The best place ....well...besides my Dr at MD Anderson, to get real and correct info on this terrible disease. I believe Wikipedia should be burned with the devil...because it can sure scare the H out of a person with cancer! Stay away from it......bad bad stuff!
That's it! Good night!!
Patty~~
This is our time to share what's going on in our lives, etc. After almost everyone was gone, I received a message from a girl from another state. Her mother also has IHCC. I am not going into details but I ask that everyone stop right NOW and say a prayer for Betty. That she fights and wins this CC battle. To Betty's family...I will continue to pray and please know you can contact me at any time.
I just checked the stats on my blog....I am at 101,855 hits. They come from several countries. People are looking at my blog from all over the U.S., Russia, Canada, U.K., Sweden, Germany, Norway, Saudi Arabia, Ukraine, and Estonia. A couple of those places I couldn't even tell you where they are on a world globe! ;-P
When I was diagnosed 3 years and 5 months ago, I prayed to God that he gave me time....time to see my girls all happily married, time to praise HIM for being so intertwined in my life after being diagnosed. I prayed to HIM that if He gave me more time with my daughters, I would praise His name every chance I got. I would "Pay It Forward" every chance I got. I would help any cancer patient who needed help...get help. Life is....all about time.
Well, speaking of time, my last daughter gets married August 23rd and I couldn't be happier with the man she has chosen to marry. So, with less than 8 weeks to go, invitations are in the mail and our list of To Do's is getting smaller and smaller. It's the 4th wedding after all...a piece of cake! Heck, after this wedding, I wont even be able to afford a crumb off the cake! ;-)
I visited my local oncologist, Dr. Dy (Dee) who was super excited with my reports from Houston. He said he is also amazed with my stability. He told me I was lucky and I corrected him and said "NO, I'M BLESSED"! I believe God truly is working thru me to give people hope, to let them know there is life with CC......there are a lot of factors whether you have a giant struggle or maybe you don't. Some say I have had a big struggle....but I don't remember it being that much of a struggle. I may not be eligible for a transplant but I am ok with that. I may not be eligible for a resection....but I am ok with THAT, too! I am A-OK with cooking that nasty big tumor in there so if it wakes up....we will cook it OR maybe do immunotherapy if it's approved. Wouldn't that be exciting. I might not get to be the poster child for Immunotherapy but maybe I could be right beside Amity on a billboard! I'm ok with that! For you who do not live close, you do not know that my granddaughter is on billboards in a few surrounding counties plus the county I live in for Richland Memorial Hospital. It makes me smile every time I go by one.....I just want to wave at her like she can see me.....AND, if I am the only person in the car, I do wave and smile at her!! Now the secrets out!
The RMH food program for chemo patients is still going great. Lots of greatful people who are hooked up to needles/tubes/I.V. poles and just enjoy some of Richland counties good food.
So, for now, life is good on Suntone Beach. I will be working a lot at the fair starting this weekend....and enjoying all the day lilies blooming, hosta's big as flying saucers, a momma raccoon in a tree hole with three babies... L.I.F.E. It is all around us. I have learned the hard way to enjoy it and take it all in. Respect it and give thanks!! These are my thoughts for today.....I am calm, I am blessed, I am thankful! I am a survivor!! Many hugs to my CC friends....and to the Cholangiocarcinoma.org website. The best place ....well...besides my Dr at MD Anderson, to get real and correct info on this terrible disease. I believe Wikipedia should be burned with the devil...because it can sure scare the H out of a person with cancer! Stay away from it......bad bad stuff!
That's it! Good night!!
Patty~~
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