"The Georgia Liver Working Group."
Yesterday, we had a conference call and I was able to share a bit of my story with people much more educated on liver cancer than I am.
The connection for me is so amazing because like me, they want to educate liver cancer patients of their options, that the oncologist are not offering to them and working to try and spread the word of hope in treatment with Oncologist . It feel's like it's fate for me to have been connected to this group. The group to my understanding is made up of medical doctors, nurses, pharmaceutical rep's.... They have no one like me in the group that has this cancer . I think what I can bring to the group is the patient perceptive.... something that they have not been able to understand, I know that I can't explain this disease that they can begin to totally understand how I feel, but I think it could help in so many ways to have me there hand in hand doing what we can to help save other people's lives, that have honestly been given no hope for life as I was over and over again by these oncologist that can't seem to think outside of the box.
I am excited and actually I was asked yesterday if I would be willing to speak at the Society of Interventional Radiologist Annual Conference in Feb. I am excited about that And to show these doctors and other people how well a treatment can work that they may have once never thought or considered it to be an option for their patient ... I will be the new face of liver cancer, I want to have all that I am doing and will do.. mean something... do something amazing, and open some eyes and get some of these old school doctors on board for saving their patients lives. And throw standard protocol out the window and try something along with what they have in the past.
Old school... is fine... but, I believe that in order to save lives you can't stick to a protocol that they know is a death sentence sooner or later and continue to repeat the same things and not chance saving lives. . I refused to accept a death sentence. I knew from day one that I was going to do whatever it took to prove all these doctors wrong.
My message should be loud and clear when my Pet Scan comes back next time and my liver is cancer free. Something none of those old school, only working inside of the box doctors spend their days never really giving their patient the chance of life that they deserve.
Life is precious and I think oncologist are so use to people dying that for them it's just another day at the office. What makes me sad is there are so many people in the world, that they accept the first opinion that they get and they just do what they are told and don't live to see long into the future. Just writing that breaks my heart and sends tears down my cheeks. I know that I am a very loud voice, even if it is here on my blog. I am not shy to say what I want, nor do I fear saying what I believe. I have written my blog to help other people, I have shared my story to hopefully have it in the grasp of someone else that may be facing what my fate should have been, that I refused to accept or allow in my life.
I am excited and actually I was asked yesterday if I would be willing to speak at the Society of Interventional Radiologist Annual Conference in Feb. I am excited about that And to show these doctors and other people how well a treatment can work that they may have once never thought or considered it to be an option for their patient ... I will be the new face of liver cancer, I want to have all that I am doing and will do.. mean something... do something amazing, and open some eyes and get some of these old school doctors on board for saving their patients lives. And throw standard protocol out the window and try something along with what they have in the past.
I had my CT Scan on yesterday and I met with Dr. Chamsuddin we have a little more work to go. 2% of work... where we have already beaten and defeated 98% of the tumors in my liver. To have him sit across from me and to hear him say "It makes me so happy to sit here across from you and to be able to have a conversation, is amazing because to be honest I thought you would no longer be here. You are not suppose to be here Christy" It truly tugs at my heart and soul strings to hear him say that. The reality of this disease I have never faced because I have been so busy doing what I can with these procedures and chemo to get rid of this horrible disease... that I had no time to sit and really analyze what could have happened to me or what was in the text books and clinical notes that say I was suppose to have already died. I am not dying. I refuse to die of this disease. I am winning. I am doing what I know most people are amazed that I do and when I get knocked down and I always stand up taller each time I recover a little more.
My journey has been tough. A lot of tough decisions to have been made. Taking chances, going with my gut feeling when sometimes I wasn't on the right road, and having to have the courage to pick up and change treatments all together. I refused chemo at first . I never wanted chemo. I fear it in ways that no one that hasn't been through it could even begin to understand, But, I am doing it .. I have been told to do, I go when I am suppose to go and I sit there for 3 hours and allow this liquid to go into my port and into my body. I always feel a little sad when they start the chemo, I just don't want it in my body ...but looking as to how it does effect me, and then to feel almost normal and recovered on the weeks I don't do treatment I am tolerating it and I will continue to do it until I am told I no longer have to.
Last night, I was up late for some reason and was looking at facebook and saw where someone had shared a story post , this lady has cancer and she died earlier this week, she had written her last blog about her disease and after her death it was posted. It tore me apart to read it. but honestly... I thought... what she wrote was some of the most amazing things and I thought I would share the link to the article here for everyone to read.....
We all have a beginning and ending to our lives and most times we can't for see the ending. I am walking in faith and desire for life. I wake every day grateful to see my little girl and the sun one more time. Anything could happen to any of us at any time. Live life to the fullest.
As always... Don't cry for me... Pray for me.... God hears your prayers I am living proof of that!
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