Blog #100. Recovering daily

Life has its own weird way of changing who we once were. What we thought was important. What are lives are in one moment... can be change in an instant.  No notice. No fair warning. No way of really being able to understand how much things will change and how strong you must be to survive the changes. 

I haven't posted in a very long time. I've been feeling so bad. I ended up having half of my liver resected in July and since then it's been one thing after another trying to get through and overcome to get myself back to somewhat of a normal being that I once was. I am in baby steps mode right now. There is no other choice because I've lost lost much weight, muscle, and strength.  

My life has forever been changed. The last 22 months has been rough. I've been through so much. I've overcome when I wasn't sure that I was going to be able to. I've had so much love, support, and prayers from some of the most amazing people! I am so grateful for those things. Those things that no amount of money can buy no matter how much money you have! I use to think that what made me successful in my life was my career. The car I drive. The clothes I wore. I thought material things meant more than anything and honestly I admit....I was wrong!!! 

Life is about the love you share. The friendships and memories you make. The precious moments like while I'm sick laying in bed I'm making Christmas wreaths and listening to Christmas music with a friend. It's getting a gift from a friend with a card that has messages from 2 young girls telling me what an inspiration me and my fight has been in their lives. Those are things that melt my heart. My heart is full of love and happiness even in the moments that I'm hurting I'm just grateful for another day and another chance to continue my life and that the blessing we all should be thankful for at one point or another in our lives. 

I'm going to try my best to post more blogs. I know that's how so many people keep up with me and my journey. 

I hope through my fight and as through the eyes of some precious young girls I can show myself and the world that no matter what you face in life. No matter how hard it gets. How much easier it would be to just give in and give up that the fight comes from within. No one else in the world can make you fight its a choice individually. I'm fighting. I'm fighting to see many more years. Make so many more memories and to share in a world that often needs a simple reminder of how simple happiness can be if we allow it.  In this season of Christmas look past the gifts and remember to make the memories that will last a lifetime. You forget the presents you got but you won't forget the memories you make. Sometimes a simple moment can be one of your greatest memories one day.  

I appreciate your love and support. Without you all I couldn't make it through.  

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! 

Blog #95... Truthful fears and insecurities on Pet Scan Days.....

I have so much restless energy, today. I can't eat because... I am having the pet scan and I am starving. Go figure, these days I am never really hungry and because I can not eat, I want to eat even more. I hate that about myself. I always have wanted the things I can't have, just because I can't have something, it makes me want it more. It's all so crazy!

I am looking forward to doing the pet scan and yet in my mind I am so uncertain about it. I go from being okay to worrying about every single little thing that doesn't mean anything at all. I go to that place of total fear, fear what the results are going to be, fear that cancer may have gone somewhere else and spread, fear that I didn't do chemo for 3 weeks so I could enjoy my girls trip and I fear because of that I messed something up with the cancer. I feel guilty for this monster living inside of me. The monster could care less about my feelings or emotions it just wants to take my life and the harder I fight the more stubborn it has seemed to become. I just can't wrap my mind around the fact that I may be free and I know in the back of my mind since there is still a cancer marker indicating cancer that the cancer is still there. How much torture can this disease really take? We have blasted this crap to the max, we have gone above and beyond what is normal to kill this disease and it still keeps wanting and coming back for more... I want to just cuss it out,. I want it to go away. I want it to just leave me alone and let me have ALL of my life back and this just isn't up to me. It's a fighter. Cancer has it own way of recreating itself and I don't understand it. 

I want to believe that what we have done is enough... but I don't ever go into anything trying to pretend that the mere facts don't exist. I am a person that looks at the whole picture. I know the picture is beautiful and I see the life living inside of it and yet as much as I want to believe that the fairy tale is there... I am in reality knowing that I have more work to do. That this monster is wanting more torture to see if it will finally give up and just walk away from me and what next go to someone else? That is even worse. I wish there was no cancer. I wish there was a cure. A way to know how to get this disease from even entering and invading anyone's body. It breaks my heart and yet I face this disease myself every single day. I wake up checking my glucose to make sure it's not to high. I take pain pills a couple of times a day just to deal with the back pain, I think about the chemo when I am completely wiped out convincing myself I wont be feeling this way much longer as it leaves my system. And then there are these all so dreaded pet scans that I hate almost as much as anything else about cancer. 

 It's the answers we are looking to find but it's not always the answer I am wanting to hear. I am not negative about any of this I am just a patient going through this horrible disease. This painful disease that takes so much of my body and mind and I know that I am fighting for my life. I fight to stay alive. I fight to beat this monster I can not see. I fight to raise my daughter and to be here with the people that I love. It hurts deeply. I fear the things that I never let come from my mouth. The words that break my heart inside that no one can ever see because I fight for the right to make those words unspoken with each day I do a treatment, take a pill, or do another test. I wish I were not this person. But I am .. But I am! 

This road has been full of amazing people cheering me on and yet with all the love and support I am shown... I feel so alone sometimes. The realty of this disease for me is every single day. It never becomes old news for me it's always forefront in my mind. I have been open and honest with this journey, there are days that are good and there are days that I have total fear in my mind. Today is just one of those days. Every 3 months I have these pet scans done I get myself all worked up and worried. I like being scheduled and having it done first thing in the morning. That way it is done and over with and today I am schedule for 1;30 and that leaves me almost the whole day to sit and think about it. I hate that. Once it's done and over with I don't seem to worry as much I  seem to find a calmness. 

I just wanted to open my heart and write the words that were on my mind today. I know either way good or bad news I have and will continue to give this monster all that I have inside of me to kick it's butt. It's not an easy road at all. But, it's what I am facing and it's what has to be done. 

Please pray for me to find the peace that I need to get through today. I really appreciate your thoughts and support! I wonder sometimes if my test days and reading my results can hurt Dr. Chamsuddin as they hurt me.I know it's hard to be my doctor sometimes,because I am so in your face and so a part of your life and my story has been read and shared with so many people. I tell him all the time one day I will be famous, he laughs and says "You already are" that is what makes him great! 

I feel like Dr. Chamsuddin is a much as a part of my journey... as anyone in my family is. I remember the last results when he called and had to tell me that there were 5 new tumors that had shown up, I could hear in the tone of his voice, I knew it was hard for him  to see those results much less to have to tell me. But here is the thing... He has not given up on me. He keeps pushing himself and pushing me along this road of cancer and he is the expert and no matter what today's results may show I know in my heart that no matter what is or isn't there... I am with the doctor that I am suppose to be on this journey with. I would not change a single thing, except to have believed a lot sooner and just gone for it a month or two earlier. I had to search my options and just glad my best option was still there and available when I finally made my mind up. Dr. Chamsuddin is my hero he is an amazing man and doctor and because of him I am here to still write and share my story, I have no doubt about that at all. 

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

Blog #94 Please Pray for me... Pet Scan is tomorrow..

Here I go.... again.... My next pet scan is scheduled for tomorrow. I always find myself getting very anxious the day or so before the scan. It's the results I worry about... not the scan itself. I have the scan procedure down to a science I could administer the treatment myself, if the truth be known. I have a lot of things on my mind before having this done. It's the tell all of where the cancer is within my body and as I hope and pray to God that all the cancer is out of my liver, I just don't know. 

Before going on my trip to Mexico I put off any chemo treatments and my cancer marker. I just wanted to go on the trip and not worry about anything more than I already had on my mind. I had chemo last week and I asked the doctor to order my cancer marker, it went up a tiny bit It went from 188 to 208 which honestly... was not alarming to me at all. Last time it went up, it doubled so I felt okay with being where it is. This disease gives me all sorts of things to think about. I have to pay close attention to my blood work. Certain test determine certain functions. It's so weird how our blood work says so much about how our body is working. 

Things are okay with me. Chemo did it's usual thing and wore me out this past weekend. I pushed myself a little more than I normally would to get up and do things. It was a holiday weekend and I didn't want to be stuck in the bed while everyone else was out having fun. Besides, I had promised my daughter, Evan, that I would be better this summer and so far I have done good fulfilling that commitment I made to her. I am just hoping that there is no new procedure on the horizon, that will be determined by the pet scan and what Dr. Chamsuddin thinks should or should not be done next. 

Life is crazy I am still trying to work as hard as I always have and some days that commitment is a little harder to fulfill than others. I just don't always feel good enough to be sitting here at my desk at work... so there are a lot of times that I find myself going home and working from there. Not that it matters, none of my customers know, I know and I know me and I want to be productive and for me being productive is being in the office working. I am weird about certain things. 

 I have always been harder on myself than anyone else has ever thought about being on me. I just think that I should and could always push myself a little more. I guess you can say I am not so much that way anymore. I know when my body needs rest. I know when I am tired and I need to lay down. I know that I can not  be that person I once was at least right now. I just know that I want to beat this disease and if it means me changing to allow my body the time and rest that it needs to do that, than I will do it.

 Life is a lot simpler when you are not sick, that's for sure. It's not easy getting up every day and not knowing what the day holds if you will feel good enough to make plans with other people. I have really tired to avoid making plans, I don't make commitments to people because it's not that I worry about hurting them... it's that I worry about it upsetting me, if I can't go. I have always been that person that was "all in" on anything but I have learned that I can no longer be that person so when and if I feel good enough I go and if I don't I just stay home. It's really a lot more of a mental aspect of having cancer that makes the disease so hard. It takes away parts of you that you never thought it could and then it gives you such new and better perceptive on life in general. Being sick makes you see and appreciate the little things more than you ever thought you could. It's not easy to see sometimes because looking back on life you realize all the things you might have missed out on. 

I have had so many people contact me over the last several weeks about their own family members being diagnosed with cancer.  Where is this coming from? Statistic's say that 1 in 18 people will have some form of cancer or another. That is unacceptable. It's heartbreaking. And unfortunately with no cure, there is simply no way to even know where all these cancer dx are coming from. I see fight for a cure but where is the cure. Who has the cure? When will this monster ever began to lose it's battle in our bodies if we can not figure out where it is even coming from?

I get upset sometimes when someone new reaches out to me. I want to make things better for them as I have been given this second chance at life that I say I wasn't suppose to have but I don't believe that/ I was lead to where I was given this chance with..... 1 man that was willing to take a chance on me. 

Willing to take me on and risk it all to do what he could do to give me back my life. As much as I took a chance on him he also took that chance on me when no one else was even willing to do so. I talk a lot about Dr. Chamsuddin. I know I sing his praises because honestly I have no other reason to be here and alive without his expertise and God's grace.  It makes you realize how special you are in the eyes of others. Dr. Chamsuddin. has gotten to know me on a personal level I have given him my single mom book I published, I gave him a Team Christy shirt, I have laid my heart out on the line about the love for my friends and family. I made myself more than just a patient I was a person. I wanted the person I walked down this journey with to know who I am that has been very important to me. I wanted him to know that his efforts and his strides to helping me is more than just about a patient laying on a table he was treating That I have a life and that I have so much more to live for. Some doctors could really care less. Each patient is a patient and they will do what they can for them and that is the most involvement that they had with the person. I am more than that, I wanted to live and I wanted Dr. Chamsuddin and the entire world to know that I wanted that more than anything else in this world. I have been the person that made the decision to do all the procedures and not once have I looked back and thought... I should not have done that... Every hard thing I have been through has lead me to today... Almost 16 months still alive, not just alive but being a full time mother and insurance agent working full time. I am still very active and functional in my life and for that I am so forever grateful. I don't know what the future holds. It's all about a little nuclear sugar inserted into my body tomorrow as I lay in a machine that will give us the answers we are all longing to hear. It may be the best news I have ever heard and it could be that we are back to fighting the monster  again... Regardless I have the most amazing people in my life to cheer me on, cry with me, pray for me, and to lead me on to victory in the long term of whatever and wherever this disease my lead me. 

Please say a prayer for me and know that God has done amazing things so far and I know in my heart he will continue to do so and lead me the right direction for my life. 

I want to live. I will never give up a day that I am breathing on this earth to fight this monster inside of me. I know that when I was told I would not lie 12 months I never could and would accept that. Not because of any other reason than I knew I was in good hands! I knew that I believed in and trusted Dr. Chamsuddin in a way that I had never ever trusted another human being in my life. I respect him and I really care for him. He has given me hope and hope is more than I ever thought I could have had before. I cried one time in Mexico just thinking about the fact that a year ago I would have never dreamed it possible for me to be on a girls trip much less out of the country... He has given me the greatest gift I could have ever asked for and that's the second chance at life. I believe there is a higher power calling me to lead in my journey of cancer not only for the good of the people that personally know me but for the strangers I meet along the way. I am so happy to have the opportunity to share my story and to give hope to others when they may feel there is no hope left for them. I wish my heart were bigger, I wish I could travel the world sharing my story, and so instead I use the internet. I checked my google plus account another place I post my blog and I have had to date 471,755 views.. Amen is all I can say. 

I have been busy writing my story. I have put a lot of time and energy into writing my book because Dr. Chamsuddin says it's time. I know it is mainly because I feel good enough to write it. This whole time I have been sick I have been putting the cards on my wall at work. It was my wall of inspiration. When I decided to write the book I thought those cards would be a great tribute to the love and kindness I have been shown by so many so I have cut up the cards into pictures and words and placed them strategically throughout the book. I wrote to Ellen yesterday and I am hoping to hear from her about my story and also I am going to write my contact again with Oprah's Network and see where I can get this book going. It's a true story it's my story that I have shared all throughout the journey but I hope that I can make something more happen with the book and hopefully reach people that have been given what I was given... No hope.... I was given hope by one doctor that was willing to take a chance on me as much as I was willing to take a chance on him. Together we make a great team. I wish everyone had their own Dr. Chamsuddin, but I am willing to share mine if it will save lives. 

Don't cry for me.... Pray for me....Thank you for reading and sharing my story you never know who may read this and need their own sense of hope today! 

Blog #93 1 year of treatments and chemo

I

It's amazing how fast a year really does go by. 1 year ago this coming Friday,  May 22nd, I've been on my chemo treatments, procedures, and medicines to get me to a better place. A road that I began with no end in sight. No way of knowing where that road would ultimate lead me or how  long I would have to travel down it,to get me to where I was suppose to be. A road that was unpaved and untraveled like any road I had ever known. It's almost like I went in with this person telling me the direction to go but  never promising to get me to the end. It's  like I was traveling on the road and would have to stop and rest and get gas.. In those times I was recovering and all of the sudden out of no where the engine would start back up before I was even really ready to hit the gas again! I would hit the pedal and I would take off hard & fast without even knowing where this road was heading next... other than... I knew no matter what I had to keep traveling, hitting that gas, and keep looking towards the end no matter where it would lead me. I had to make this work. 

It wasn't always easy. I remember all the nights I would cry. I would beg my brother to not make me do another procedure again week after week with  no real time to feel good enough to do it and I seemed to find myself pushing through some of the toughest days of my life not because I wanted to but because I had to... I wanted to live and I made a commitment to myself and Dr Chamsuddin  and I had no choice but to fight. Fight harder than I ever had before for anything. 

Looking back now 1 year later.. I have made all the  the right choices. I made the decision  I could do it and I put everything I had inside of me to make it through those tough days. I'm still on the road and I'm still going strong. I'm still fighting. I'm still believing that I can see this disease through to the very end. I've seen and felt ways in my life that I never dreamed I would go through. I've rejoiced at the outcome of my procedures and I've cried when things haven't been the way I wanted them to be. I've been happy and sad. I've had really good days and days that I was so sick I had no idea if I would be able to ever get out of bed again...I've been a roller coaster with my body, mind, and emotions. I've had to trust in the doctors that I have chosen to treat me, especially Dr Chamsuddin I couldn't trust him anymore than I do.  I have all my faith in him. Faith that he makes the right choices for my treatments. Choices in when and what needs to be done. I have gone into every thing  he's done for me knowing as a patient and as a person he's always had my best interest at heart. My brother Greg and I were having a heart to heart talk one night, the kind of talks that we rarely have, it's that kind of talk that takes your emotions and shakes them to the core of being so emotional on so many levels. I was saying something about Dr Chamsuddin liking me (as a person) and how it made it so much easier to get through all of this. He said " Christy, it's so much more than him liking you, he loves you like so many other people do" I am one of those people that I grow on you. I'm bullheaded and determined but also resourceful and understanding I don't even pretend to have all the answers through this disease. I leave that to the professionals. I ultimately have the say so in my health ..as all patients do but I am a believer in the treatments I'm doing and that makes all the difference. I haven't had any decisions to make other than when I initially had my first Y90 and agreed to starting down that road to my recovery ...best ...decision I ever made. The best decision I could have ever even been offered to me. 

It was my only HOPE. Hope was all I was given and thank GOD I took that hope and ran with it. I get teary eyed sometimes when I sit down and think about where I was and how far I have come. It's not been easy by any stretch but it's been worth every ounce of fear, pain, discomfort to be here today and alive. I am defying the odds. I am one of the lucky ones   I respond well to the treatments and I'm able to tolerate the chemo for the most part.  I have my days that after my chemo treatments I am dead tired and hurt all over. After a year you would think I would be use to it and in some ways I am and others it's hard to accept it! I do the best I can. And that's all I can't expect of and for myself. 

I had chemo today and my two friends I always sat with for months and months now  are no longer there ...they have both gone into remission and I was a bit sad to go without them today. I sat next to a very sweet lady and we had a great conversation. She usually goes on Monday's and with it being Wednesday and just going in to follow up on something she had done on Monday  not having treatment ..she wasn't prepared for having to do the chemo today...so when my sister showed up with a pizza from Mellow Mushroom we had us a little pizza party and it made the day better. I can walk into a crowded or nearly empty room and leave there with at least one new friend. That's me ...it's just who I am. I love hearing about other people's lives. You can learn a lot out of life by listening and not talking! That's the truth.  

I've learned a lot about myself over these last almost 16 months. I've learned to take life one day at a time. I've learned to be stronger than I that I could and that I don't have to be perfect. I don't have to take what others think about me and make it my own. I have learned to understand that not everyone will like me and not everyone is nice and caring. I've seen some people run so fast out of my life for their own insecurity reasons and I've seen some of the most amazing people running to me with open arms. Life gets tough and sometimes people can handle it and sometimes they can't. It's a personal decision to put your   own self aside to be there for someone else. It's not easy to watch some one suffering and fighting for their lives! This disease has touched my life in ways only the fear of dying could ever touch! I have had to have those sit down moments that decisions had to be made just in case. The reality of what this disease really brings to your life isn't something I could even begin to describe! It's that knife through the heart moments in those conversations that had to be had and those choices that have had to be made just in case. For me I've taken care of myself pretty much all my life. I've been a very strong and determined single woman. I have worked for every single thing I have and I have taken great pride in that. I won't let the end of my life be without me having the final say so in my arrangements, decisions for my little girl, those are some of the  hardest parts.... I found about being sick but I honestly didn't want to leave anything for my family to have to decide. I have even half way written my own eulogy I wanted to leave this earth having my final say so to the people I love. I know that some people see that as a negative thing that I planned those things out but it's no way an indication that I have given up its being prepared. We  should all be prepared. One day it's all of our final days and if you know when yours will be than you must be pretty darn smart.  

Opening my life and heart up to the world with my disease hasn't always been easy and  to be honest it's  been heartbreaking to share some of the news. The disappointments and fears of my own personal insecurities have been shared with my readers because you can be the strongest person and still have fears and be afraid. It's okay to be afraid. It doesn't mean your weak because you fear something what makes you weak is if you don't keep trying your best to overcome whatever obstacle you are personally facing. 

Today, I met with Dr Carter,  my oncologist, we have had a very good relationship throughout  this last year together as doctor and patient! He's very open to listening to my thoughts and concerns. When I have talked with him about not feeling well enough to do the chemo treatments he's always been open to agree and understand me. He's a good man and he really had a compassion for his patients as well. Out of all the oncologist I had seen he was my best choice for managing my treatments I could have found. Dr Chamsuddin referred me to him and that was another wise choice. Today we talked about a chemo regimen change.  He didn't like the idea, mainly because my body has responded so well to the gemzar and all the medical procedures I have had. He thought that staying with the gemzar at this point was my best option. He said there are so big gun's chemo that he could use but there was no sense in those while I am not needing them. He said as long as the tumor market is down and I've done so well with all the other stuff we will leave it alone. He said there may come a time that we have to pull out the hardcore chemo maybe 2 or 3 years down the road but for now I'm doing excellent and to keep up the good work. I wish chemo was over. I wish this while nightmare would end but I just have to get going strong and giving this mess my all! I may deal with this the rest of my life my hopes are that I won't but my fear of it spreading or dying is bigger than my fear of doing the chemo so I stick to the plan. The plan is working. 

I have some great news. It's summer my little Evan is out of school for the summer and unlike last year we joined the neighborhood pool and I've been able to get my work done early in the day so that I can get out and enjoy the warm weather and spend some real quality time with her. Last summer was horrible I was not able to do anything. I promised her last year that I wasn't always going to feel this way and next summer would be better, and it's worked out just like I said it would. 

I may not be able to do all the things so many other mothers can do right now but I love her and I am giving my all to every aspect of my life. One day she will be able to read these blogs and understand so much more about me than she ever would have otherwise!! 

I am scheduled for the all so dreaded next pet scan ...Thursday May 28th.  I am praying for great news. Praying that the last Y90 was able to get those new 5 tumors that showed up and that there is no new tumors there. It's going to be what it's going to be. I pray for great news. I asked the oncologist office to order my Cancer marker today.  I have not had one since mid April because I didn't want any new news before going on my Mexico trip.  Tomorrow. will be when I find out about where the marker is. I hope it's down, that will give me some indication of what to expect with the pet scan. The Cancer marker has been a great indication of my Cancer. It went up only when the new tumors showed up so if it's way down from the last one at 180 I'll be very excited. They say not to count much on the tumor marker but thus far mine has been spot on!!!

I have high hopes... I feel great and look even better. My attitude is good and my will to live gets stronger with every day I fight this monster inside of me! I have had a lot several people reach out to me this past week with someone they know being dx with cancer. It's always heartbreaking to hear of someone new being told the worse news of their lives! You don't know or understand what Cancer really means until it happens to someone you love! I make one recommendation to every single person and that's to set up a consultation Dr Chamsuddin that's really the only advice I offer because without him I would not be here today and if I could give anyone the most precious gift it would be to have him as their own doctor.   I sing his praises and I am sure I drive people nuts but there isn't a person that will ever read my blog, meet me, or even know me that won't hear about this man and all he's done for men when someone gives you your life  back why wouldn't you want that doctor on your side. I give praise where praise is due. He was the only doctor willing to take a chance on me he took me under his care and has given me all of himself as a doctor he had/has to give. I know I'm needy. I know that I can be a royal pain with all my questions. He answers the ones he wants and tells me he's ignoring the ones  he doesn't want to answer because it's never always cut and dry as to what he's going to do until he gets in there and starts doing his thing. Some things I don't need nor want to know and he leaves it at that! 

Next week will lead us to what if any direction we will be heading in next. I am anxious to know and ready to see where else this road may lead me next. Regardless of what may happen I'm in the best hands possible and prepared for whatever may happen. I'm thankful for such a great doctor to have on my side. He's a great doctor and more than that he's a great man. Some doctors have no bedside manor... they get so use to be a doctor and refuse to  see past their profession to find it within them for compassion for their patients. I'm glad that Dr Chamsuddin... is a very compassionate man. He tries to hold back but he doesn't fool me. I see right through him and that's what makes him so great to me! 

Don't cry for me... Pray for me. Please continue to pray for my recovery and know that I truly believe God answers prayers. I'm still here and alive and every day I wake up he's answering mine!