Blog #98... Raw Feelings and The Truth...

I've never been one to sugar coat my thoughts or emotions. I've been the type of person that you never leave a conversation wondering... what I'm thinking. I'm a very verbal person. Expressing myself orally or written has never been much of a problem for me. I easily express my approval or disapproval of situations. Sometimes, I've gone a little overboard with my words and actions and often left walking away from a situation embarrassed by the way I acted. I have had to apologize to people more times than I ever really wanted to. I have always been an "in your face" kind of person. I never really felt comfortable doing it but I have to know things. So being direct and very forward is the only way I felt I could be to accomplish what I wanted. I have always hated secrets and/or sunprises.  Never been good at keeping them are wanting them for myself. I guess you can say I want to know it now and later isn't an option. I've been pretty successful with it too, I must say. Which leads me to right now.......

I'm sorta at a crossroads in my own mind. Wondering if the pet scan results are as bad as I try not to let my mind think they may be. It's a scary time. It's a time that I'm in reflection mode. Reflecting on a life without me here to live it breaks my heart into a million pieces! I am wondering how fair a world it would be for my sweet daughter I brought into this world.. to love and protect that may have to live the rest of her life without me here to do that. Try that feeling on for size.

 It's the worst feeling in the world   I think about my brother and how he will face the world without me here to worry him about how he's going to protect me or how he is going to fix me. I think about my mama telling me she only saw him cry two times in his life and one of those times is when someone hurt me ...which hurt him. I think about all the things we've been through together and that's everything in our lives. We have shared the times that brought the most joy and the times that have hurt us so deeply that no words were even needed to be spoken and just the thought of him having to make it through me dying isn't something that I can even begin to understand how he will make it through. I will want to be here for him but I won't be able to. Then you have my sister and I remember when I first got sick she said "life won't be worth living without you" I hope she will find her way to move on without me and know that somehow and someway I will find my own way to be here with her. I worry about how strong she's had to pretend to be through this with me to help try and build me up and she hasn't allowed herself to see that I may not survive this and be upset that she didn't see it  ...someone tell her it's okay. I want to live and for these 16 months I have fought. I have picked myself up time after time after time to fight over and over again. I'm giving this disease all the fight I have inside of me  I have accomplished this fight with grace and dignity... that I didn't know I could have because the "old me" would have been cussing and screaming.  I would be mad not only at the disease but at the world. I would want to have known ...why me. I hope the answer to that is...it's me so no one else in my family will ever have to suffer from this horrible disease ...I pray  to God I paid it forward to spare each of them. 

Anytime I have a conversation with anyone they don't want to hear me say I'm making plans. What about my house, cars, and furniture? No one wants to hear about the  "what if" part of where this disease may lead me. That's their problem I have to plan things out. I want things all set in my mind no matter if it were to happen next week, next month, or ten years from now. I'm faced with a life changing disease I've been strong. I've been positive, I've been determined and I have honestly been realistic. I am a problem solver and sometimes the solution isn't what we wanted not hoped for its just reality. 

I don't know where my meeting on 

Monday is  leading my journey now. I can't lie and say I'm not worried. Apparently... I am. But,what I refuse to do is stop living my life. I am loving every day that I have and I do what I want and feel like doing. Yesterday, when I got the text that Dr Chamsuddin that he wanted to meet me on Monday I wanted to stop and buy a pack of cigarettes and get me a big bottle of vodka, tonic, and several limes and just get drunk. Just smoke up a storm and drink until I passed out you ask..what good with that do? Not a darn thing ...but give me another reason to  feel bad and hug the toilet the next morning. A good drunk night never hurt anyone...well not really. I didn't do it. I just cried my eyes out and tried not playing vilian and victim in my mind like a ping pong game.  Positve and negative bouncing all over then place. Frustrating. 

I have so many things on my mind   So many thing left to do and say so many things that I want to teach my Sammy Jo so ... many years from now to see my grandson play professional baseball one day. The things that I can't even get done in one lifetime much less in the uncertainly of time I may or may not have left to do all these things. 

The uncertainty of the pet scan results stops your heart, mind, and life in its tracks ...wondering what next. Life is all about what's next.  I want to live forever and yet I know that isn't possible. I won't live forever... none of us will... live forever. 

I know one thing. I am 16 months into this disease that was killing me when  it was found. I have been lucky enough to meet a doctor that took me on as a patient. That was willing to use his expertise to do what he can to save me. I know he is still doing that. My brother called yesterday and said "Christy, that man loves you and he's not giving up on you.  I believe that he's working up a plan and he will tell us when he sees us on Monday" I believe that too. I know he will do everything there is to do to help me I believe that even if he isn't the one that could do it (like the resection request at Emory)he will reach out to help me.  How many people can say that about their own doctors? I guarantee you not very many at all. 

When I posted  on FB yesterday..that he said he had seen the pet scan and wanted to see me at the hospital on Monday I had hundreds of comments. People had different things to say and most were mad that he left it open ended. I responsed that I know for whatever reason  it's because he's making a plan for me. Most people can't understand nor accept that. We (I) live in a world that we want everything we want right this second ...we aren't willing or able to understand that some things come in time. Sometimes... it's just the way things are. The wait is sometimes what brings us further along into our new beginnings in life. I understand him.  As much as he knows me.  I don't know that it's about personal feelings.  This is a doctor and patient relationship. A doctor that wants to save me and that reads my blogs  and truly understands the journey of a Cancer patient ...through me, more than he ever has before I'm sure. . I have opened our doctor /patient relationship to the world in ways that's hard for both of us ...I'm sure. As much as I want to be the miracle he had helped to create I know he wants that as well. There's a story beyond a woman with chologiocarcinoma.  There is a life ...a life that had been shared with and by so many. There is this desire to save people. The desire for me to prove so many of these doctors wrong because I think they are misguiding their patients and not giving them the options that should be available to all patients facing my same disease. Look how far I've come I wouldn't change a thing. Dr Chamsuddin made me no promises EVER. He gave me more time and the chance and hope of making it through this disease and I couldn't have asked for a better person to be along this journey with.  

I was disappointed when he didn't tell me the scan results yesterday ...but I texted him back and I said "Thanks and You're the best" he is the best and I believe that Monday will clarify things and hopefully be a day that I can begin to know what to do next. 

Thanks again for reading and sharing. This journey isn't easy. I've laughed and cried my eyes out writing this and all my blogs I want to be all of our miracles!!!. I want to be the person that continues to defy all the odds. I know one thing I want is to live my life... I want to find  the happiness in everything I can  to surround my life with. I want the people I love to know how deeply and truly I love them all. The people that have rallied around me in my time of need have been no less than amazing. I have a large circle of friends and I'm grateful and my inner circle of friends have picked me up, fussed me out, cried with me, questioned every aspect of every single thing of this disease, and have stood by me like nothing I've ever known before ...for that I'm a very happy and lucky woman. I have great friends, a wonderful family, and a doctor that genuinely cares about me ...I could never ask for anything more. Love you all 

Don't cry for me... Pray for me.