Blog #99. My Fight Goes On

My pet scan showed that the Y90 didn't work this time on the right side of my liver. That was very disappointing! We are going to re-treat them this coming week with using the ablation method in trying to destroy them . I was extremely  thrilled that the cancer had not spread, it's always in the back of anyone's mind going through this. I tried not to think  that way  but your mind plays tricks on you when you are scared and uncertain about a situation you are going through. 

Well tomorrow is Father's Day. It's not a day that I celebrate my own dad. My dad wasn't ever really much of a father to me. He wasn't dependable nor willing to give of himself enough to be what a little girl needs in her life. I think what's made me strong enough to fight this horrible disease is all the disappointments I have been shown in life ...by so many people. Like my father, I rememeber sitting on the curb waiting for hours with my little suitcase by my side waiting on him to come and pick me up. He never showed up. 

I remember my mama calling and screaming at him over the phone calling him every name in the book. I can't imagine what made a man not love his child enough to just show up on the weekends that the court said he could see me. I feel that he didn't want to be bothered by me. I grew up knowing how he felt.  His actions spoke a whole lot louder than his words ever could. Because of him and several other people I grew up to be stronger and more independent than any young girl should have to.

 My brother was the man of our house (even as little children) he was the boy and he was made to be strong! I think sometimes about that and what a hard role that had always been for him. He's carried not only his own burdens but he's carried mine and my sisters too. He's always wanted to make things right for us. Especially with me getting sick it's changed him in ways that breaks my heart. He's so much a part of my journey and my heartaches are his heartaches. Sometimes ...I wish I could just do this on my own and not share anything with my brother or sister, because it's so painful it's so uncertain and so open ended to what the outcome could and will be. It breaks my heart. I see my brother pacing the floor, he doesn't say a word and sometimes he would rather me just not talk because me talking hurts worse sometimes. I just wish I could make this all go away. 

It's a horrible disease it's not just about me it's so much more about the people surrounding me and that love me.  3 of my cheerleaders are going to be out of town next week while I'm in the hospital all week. I was teasing my friend Tonya about whose going to bring me food that I won't be able to eat... We laughed. I want everyone to live their lives I know it's hard to do things and enjoy themselves when I'm going through so much but I'm going to be just fine. I'll be in and out of there in no time. 

Evan has gymnastic's camp next week from 9-5 which makes me happy, that will keep her little mind occupied. I know at night when it's bedtime she's going to be calling and missing me.  I tell her mama has to do all of this so I can be here for a very long time. 

She's 7 and I really think she knows more about Cancer than most 40 year olds. I wish I could keep it all a secret and pretend that everything is perfect but going through all of this and being so sick and down so much there is no way I could. No child deserves to have their mama sick. Mama's are suppose to take care of their babies and I find Evan happy taking good care of her mama! It's okay it's our realty and sometimes we just have to go through the storm to get through to the rainbow. 

I'm praying for the rainbow and I'm doing whatever I can to make this my opportunity to live and that's all I can ask of myself!

 Life is so full of uncertainty...it's what you do about and with the uncertainties as to your outcome. I just know that I want to make a difference in my story. It's not it's about the good days it's all the days in between and how you deal with making it through each and every single day the best you can. When I woke up yesterday the first thought I had was about being glad I'm alive. I'm just so glad to be alive. So glad to have the opportunity to keep going and fighting. We all want to live. 

I get scared a lot. I get to the hospital and I get hooked up with my port to IV's and they take bloodwork and I lay there waiting to be taken back to the  radiology department. I sign my consent forms and I hear "we're about to give you the good stuff" I lay there wondering how long it will be before I go to sleep1...2 and out. I wake up in recovery and that's the best part of the day I'm wake which means I'm alive. Another successful procedure and another step closer to beating this monster. I'm happy! This procedure wasn't so bad. I woke up hungry which is so rare and other than being really tired and a little sore on my left side under the bandage I'm feeling pretty good. I am planning on taking it easy this weekend. Just laying around and relaxing. Getting myself ready for two more rounds of treatment next week.

 

I don't know that I would be who I am today if I had not been treated the way I had in my past. It's made me stronger in ways and more unsure and insecure in others. The insecurities I've known in my life are the things that are hidden deep from the world, they are on the surface of my heart ...but buried so deep that most people can never see. I don't let my feelings show like I use to. If I did I would be in an argument with someone all the time. I just sit back and do what I have to do every time something new comes up. I'm okay with that. My sister and I were talking yesterday and she said that she knows I get my feeling hurt because I am the type of person that would be there for everyone all the time and she said. Most  people aren't like that. Boy do I know that. I'm a giver but I've found through this I am and will be less of a giver to some people. Not to be mean but I owe the people that have been by my side every step of this journey the most. I'm changed in ways I never dreamed that I would change. I've been shown love and support by people that I never dreamed I would. 

It's okay I really don't need anyone to do anything for me. I'm pretty self sufficent. I try my best not to ask for help. I feel bad when I have to ask someone to do something for me I don't want to bother other people. For an independent person to have to depend on other people ....it's hard. 

I hate having Cancer. I hate being sick. I hate being this person that I don't even recognize sometimes. I just know that if I didn't have my will to live as strong as I do I couldn't make it through this. Believe me there are times that I think it would be so much easier to just give up. If I give up I die and that's not an option it will never ever be an option. 

 I woke up hungry and still very tired. I ate and fell back to sleep several times. Dr Chamsuddin came in to check on me. He pushed down on the incision and asked if it hurt, of course it did. But all went well and I was released and I'm home resting until Monday with my next procedure. I'm going to be admitted until Thursday! 4 days in the hospital doesn't sound exciting but I know those 4 days are leading me closer to a the rest of the days of my long life so I go in and do what we do to get this monster destroyed. 

Things are moving along smoothly as they can be. Hoping next week goes just as smoothly and I have no complications. I'm ready to have a big ole remission party one day soon. That's the goal. 

Please say a prayer for me and my family next week that everything goes as planned and I'm able to come home as soon as possible. There is no place like home. I hate being in the hospital other than getting those pain shots that can immediately take away the awful pains I have. 

Thanks once again for reading and sharing my story. 

Don't Cry For Me...Pray For Me!!!

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.   

Blog #97. Beach, Fun,Sun, and Waiting Patiently

Earlier today, as I was laying on the beach, under my umbrella, at New Symrna Beach Florida.   I had one of those moments. The moments that almost take your breath away at how blessed you are just to be alive. The moments that when you think back 16 months ago and all the things that were told to you by doctors (except for one) that you wouldn't survive 12 months and here you are laying on a beach enjoying every breeze that blows through your wig and the beautiful sunshine that shines it's rays  down on you to enjoy another beautiful day of life. I have that moment ..so many times. So many moments of being grateful just to be alive and able to do the things that even last summer were not really possible for me to do. Because I had to go through all the procedures and recovery to get me to this point. This point that I can and am enjoying my life. 

This trip wasn't planned.  This trip was one of those spur of the moment things that I knew while I was feeling good and Evan was home, I had to take full advantage of the time and where better to enjoy a few days than at the beach.

 

I've had a lot of people asking about my pet scan. I have had people telling me they are stalking my page on FB. I know every one is as curious as I am about the scan but I haven't heard any news. I had a friend tell me tonight she was surprised that I had shown up at his door step. I laugh because she knows me so well but seriously I have to wait I have to have patience. I could call and get a copy of the radiologist report from Emory that ran the scan   I could read that report and who knows what it will say. For me it's not worth the risk of upsetting myself about something that may or may not be on there. I'm in this battle with Dr Chamsuddin. I trust his word only. I believe and go by what he tells me and I do what he says I should do. So I wait for him. You learn to be patient when you are part of a team. When you know that the person you are on your journey with is the person you can and do trust. I wish I knew.  I'm not going to pretend that I haven't been a bit worried....I have ..but nothing I feel or say or even do will change the outcome of the scan. I take comfort in the fact that I feel good and that I am just continuing to live my life.   That's how we should all be. I have always been the type of person that generally assumed the worst.  Since getting sick I find myself more hopeful and secure in hearing great news. That's what happens when you have someone fighting for you as hard as you're fighting for yourself. 

I'm just happy... 16 months into this I am even better than I was when I started. No matter what ...I may have to do in the future, I'm going to live for every day... to be happy and live life as full as I possibly can ...we all should do that. 

Life isn't always on our terms. We don't always dictate or control things as we think we should or can. I thought I could for so long. I have realized that having faith and believing can make all the difference in the outcome rather than trying to force things to be the way I want them to be. It's not as hard as I once thought it would be just to let life happen. I sorta find a lot more peace and contentment in my life this way! 

I'm always sharing my story.  Always given so many opportunities to share a miracle of my life. Always willing to be whatever help I can to someone else that may be facing their own trials in life. 

Everyone has a story. Everyone has something of themselves to give to the world. It's wether or not your willing to be open and secure enough with yourself to make a difference. I'm not ashamed of having Cancer. I'm actually inspired more so by it. My story has a message for other people. 5 people may take my story and compare it to their own lives in 5 different ways. It's not about the disease as much for me as it is the fight itself. 

I have had a great week. I have found comfort in seeing the huge smile  on my beautiful little Evan's  face. My life is about making memories with her. About letting her know how loved she is and that no matter how bad I feel sometimes and when I am down and out that when  I recover we will have so many more moments in life like this week to enjoy together. I will take all my bad days to know that I have so many more good days like this week to have to enjoy with her. 

Don't cry for me ....Pray for me 

I want you all to know that I find comfort and joy from all of you that read and follow my story. I appreciate all the concern and compassion I am shown daily by so many of you. Thank you. 

Blog #96 Patience is a virtue... So they say....

I know there are a lot of you that follow my story through my blog... and I didn't want to leave you all hanging about my pet scan results. 

Unfortunately, I received a text Sunday morning that for some reason my scan didn't get uploaded into the system for Dr Chamsuddin to have a way to view the scan. For whatever reason.... it really doesn't matter. Furthermore, he texted me later in the day to tell me he would not be available to review it for a few days. Which to be honest is fine with me. Someone very close to me is  out of  town on a vacation and I didn't really want to hear any news while they were gone. This disease takes away so much of us on a daily basis and I just want them to go on vacation and not have to worry about getting any news about me. 

As much as it would be nice to know the outcome... I'm truly okay with waiting. As much as this disease is about me,it's very much a part of the people that love me, and their lives  too. It's hard on us all. My friends are more like my family. 

This weekend was a great weekend. Friday was my sister's twins, Jimbo & Georgia's 9th birthday. We all met and had Japanese. My niece Ansleigh, had her birthday April 12th and because of all that's been going on with me... I missed her birthday. So, I gave them all a card with $100 in it. They were so excited. My sister said they counted their money at least 100 times that night and 100 times the next morning. I was the best Aunt in the world that night and it melted my heart to see them so happy. My sister wasn't happy that I had given them all that much, but I had the money and sometimes you realize that giving a little more is what will make the ones you love happy and you just go above and beyond for them. I am just glad I was here and alive to celebrate and see the joy on their faces because I love them all so much and miss the time we all spent together so much more than I can right now. They understand but sometimes I wish my heart would. 

Saturday, afternoon I went to a fun slip and slide fireball shots party at my friends Tonya and Johnny's house it  was so much fun. I felt great all day and enjoyed spending the entire day with some of the best people you could ever wish to have as friends. I of course didn't do the slip and slide nor did I do the fireball shots, and sometimes its truly a lot safer and fun sitting on the sidelines just watching and laughing. 

On Sunday,  friend's Linda and Kim came over and painted Evan's room purple . Something she had wanted for a long time and it melts my heart all that they are willing and able to do to help me in this time of need in my life. I know it's for no other reason than they love me. I hope that I can one day be as good of a friend to my friends has they have been to me. 

Life is good. Nothing new still the back pain but I am trying to maintain my tolerance for it until we see what might need to be done to fix it. I am just in that waiting game right now. Waiting for the pet scan results to see what we may or may not have to do next. I am praying hard that all the cancer in my liver is gone. I know there is a spot on my lung, if I am lucky enough the chemo has gotten that and I can just begin to heal and recover from all I have been through ... Time will tell....

My friend Ashley's mom and I talked at the party for a long time on Saturday. She said she was thrilled with the success that I have been having with my treatments and she is a registered nurse and told me she had really never heard of anyone making it over 6 months with the advance stage of liver cancer that I had. But, she had not known anyone that had gone to the lengths that I have to get rid of it. I told her mom that after the alternative medicine and the marker going up sky high that I knew I had to do something and I just went for it. I risked it all to have any chance of helping to extend my life. I really risked it all. I had no other choice. I was not accepting the fact that I would die. I didn't want and still do not want to die, I know that is not up to me. I believe that there is a plan for me. I think I am traveling and following that plan every day that I live and every day that I share my story. I never knew what to expect. I never questioned what next because I knew no one had the ultimate answer I would be looking for. The thing about my journey is that I have had the faith and the ultimate care to survive where I am. I feel like a hero because I hear that so much from people. That I am some miracle and I know in my heart that I am. I want to win this battle not just for me but for all the people that have been like me, told there was no hope for them. There is hope. Sometimes, you have to be willing to risk it all to make that happen. I didn't honestly think of it like that when I was making the decisions to do the Y90 I didn't believe I was dying. I didn't feel, look. nor act like I was not going to die... I was dedicated to myself in a way I have never really been dedicated to anyone else in my life. I fought and I feel like I have won. I have won longer than anyone ever thought I would live. My body is good. My mind is sharp. My heart and soul are stronger than they have ever been. My will to live is as bigger than I ever knew it could be. I never was faced with dying before getting cancer, never had any close calls. Disease and dying was other people's problems until 2/6/2014. 

That day is branded in my mind. It will forever change who I am and who I have become. I am just grateful .. I am happy. I am rejoicing in the days I feel good and laying in bed recovering in the days I feel bad. I just go with how my body feels. My mind is always saying get up and do stuff but it's almost impossible when my body just can not get the get up and go it has always had. It really depressed me in the beginning. It would upset me so bad but I guess I have gotten more use to it by 12 months of doing the chemo and procedures and I just do what I feel like and don't do anything when I don't. 

I am more than this person fighting for my life. I am so much more inside than trying to make it through a disease that I don't understand but I am this person that deserves to live my life and when I am feeling good I go back to being me. I do almost all the things I always have. I just do them less frequently. I try to make the most of every single day. 

I am happy. I love seeing people that tell me how amazing I look. How if they didn't know that I was sick they would never know it. I don't look like I guess someone with cancer should look... But how are they suppose to look? There is no diagram to show how a person with this or that cancer should look but for now I am doing great... Unfortunately....it's chemo week again so Wednesday.... I am back to the dreaded treatment but it's working and therefore, I do what I have to do. When you are getting such amazing results how do you question or refuse the treatments that are truly giving you  your life back?

My baby girl is at the beach with her dad and step mom this week and it's hard to be without her. I miss her when she is gone and then when she comes back complaining about being bored and this and that I wish she were off doing something besides driving me nuts. She is such a good kid. She is so strong and going through all that she has with me she will be stronger than she ever should be. She is my world I love her so much. She keeps asking me "Are you seeing Dr. Chamsuddin this week?" I tell her "No,honey not this week" she is so anxious to meet him she talks about him all the time I guess because I am always talking about him with people too. She loves him .. She is so happy that he has saved her mama and she prays every night the treatments continue to work and get rid of this horrible disease. She wants to just meet him and give him a big hug. I always tell her soon ...

I should be posting again at the end of the week as long as I am feeling okay after chemo. Even if it's a small post I will post I promise. 

Thank you for reading, sharing and ultimately praying for me and my family. Prayers are answered every day. 

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