Blog #50... New connections......

There are some amazing things happening in my life. Even with this horrid disease... I have found myself making some incredible  connections. Last week, I was (phone) introduced to someone that is part of

 "The Georgia Liver Working Group."

 Yesterday, we had a conference call and I was able to share a bit of my story with people much more educated on liver cancer than I am.

 The connection for me is so amazing because like me, they want to educate liver cancer patients of their options, that the oncologist are not offering to them and working to try and spread the word of hope in treatment with Oncologist . It feel's  like it's fate for me to have been connected to this group. The group to my understanding is made up of medical doctors, nurses, pharmaceutical rep's.... They have no one like me in the group that has this cancer . I think what I can bring to the group is the patient perceptive.... something that they have not been able to understand, I know that I can't explain this disease that they can begin to totally understand how I feel, but I think it could help in so many ways to have me there hand in hand doing what we can to help save other people's lives, that have honestly been given no hope for life as I was over and over again by these oncologist that can't seem to think outside of the box. 

Old school... is fine... but, I believe that in order to save lives you can't stick to a protocol that they know is a death sentence sooner or later and continue to repeat the same things and not chance saving lives. . I refused to accept a death sentence. I knew from day one that I was going to do whatever it took to prove all these doctors wrong. 

My message should be loud and clear when my Pet Scan comes back next time and my liver is cancer free. Something none of those old school, only working inside of the box doctors spend their days never really giving their patient the chance of life that they deserve.

 Life is precious and I think oncologist are so use to people dying that for them it's just another day at the office. What makes me sad is there are so many people in the world, that they accept the first opinion that they get and they just do what they are told and don't live to see long into the future. Just writing that breaks my heart and sends tears down my cheeks. I know that I am a very  loud voice, even if it is here on my blog. I am not shy to say what I want, nor do I fear saying what I believe. I have written my blog to help other people, I have shared my story to hopefully have it in the grasp of someone else that may be facing what my fate should have been, that I refused to accept or allow in my life. 

I am excited and actually I was asked yesterday if I would be willing to speak at the Society of  Interventional Radiologist Annual Conference in Feb. I am excited about that  And to show these doctors and other people how well a treatment can work that they may have once never thought or considered it to be an option for their patient ... I will be the new face of liver cancer, I want to have all that I am doing and will do..  mean something... do something amazing, and open some eyes and get some of these old school doctors on board for saving their patients lives. And throw standard protocol out the window and try something along with what they have in the past. 

I had my CT Scan on yesterday and I met with Dr. Chamsuddin we have a little more work to go. 2% of work... where we have already beaten and defeated 98% of the tumors in my liver. To have him sit across from me and to hear him say "It makes me so happy to sit here across from you and to be able to have a conversation, is amazing because to be honest I thought you would no longer be here. You are not suppose to be here Christy" It truly tugs at my heart and soul  strings to hear him say that. The reality of this disease I have never faced because I have been so busy doing what I can with these procedures and chemo to get rid of this horrible disease... that I had no time to sit and really analyze what could have happened to me or what was in the text books and clinical notes that say I was suppose to have already died. I am not dying. I refuse to die of this disease. I am winning. I am doing what I know most people are amazed that I do and when I get knocked down and I always stand up taller each time I recover a little more. 

My journey has been tough. A lot of tough decisions to have been made. Taking chances, going with my gut feeling when sometimes I wasn't on the right road, and having to have the courage to pick up and change treatments all together. I refused chemo at first . I never wanted chemo. I fear it in ways that no one that hasn't been through it could even begin to understand, But, I am doing it  .. I have been told to do, I go when I am suppose to go and I sit there for 3 hours and allow this liquid to go into my port and into my body. I always feel a little sad when they start the chemo, I just don't want it in my body ...but looking as to how it does effect me, and then to feel almost normal and recovered on the weeks I don't do treatment I am tolerating it and I will continue to do it until I am told I no longer have to. 

Last night, I was up late for some reason and was looking at facebook and saw where someone had shared a story post , this lady has cancer and she died earlier this week, she had written her last blog about her disease and after her death it was posted. It tore me apart to read it. but honestly... I thought... what she wrote was some of the most amazing things and I thought I would share the link to the article  here for everyone to read.....

http://www.huffingtonpost.co.uk/charlotte-kitley/bowel-cancer-charlotte-kitley_b_5836238.html

We all have a beginning and ending to our lives and most times we can't for see the ending. I am walking in faith and desire for life. I wake every day grateful to see my little girl and the sun one more time. Anything could happen to any of us at any time. Live life to the fullest. 

As always... Don't cry for me... Pray for me.... God hears your prayers I am living proof of that! 

Blog #49... Spreading hope....

Unfortunately, I have to have  one more burn procedure. I was hoping to be done with all of that stuff,but it's not over until all the cancer is gone, and with it being even a tiny bit in my liver, the procedure has to be done again.... I was hoping that I would not have any more cancer left in my body... after all I have already been through. But, that just isn't the case. I have 3 tumors that have a fraction of the tumor left that is lighting up on the pet scan and I have to do something about them.We are not willing to  leave any cancer in my body. We have been so aggressive throughout the treatments and there is no reason to stop now, 98% cancer free or not... I am going for the 100%!!! 

The news wasn't what I was hoping for from Dr. Chamsuddin today, and I know he could see the disappointment on my face, but I have never been good at lying about how I am feeling. I asked his secretary to please schedule it as soon as she could, that I am ready to get it done and over with. No reason to start procrastinating this late in the game... 

As Dr. Chamsuddin said today, I have made the U-turn in this disease.  Today, was the first time he said either way about if he thought I would survive this disease. He said even after the first Y-90 he really wasn't sure I would make it. I held back the tears. That was a hard thing to hear, but my liver was 50% covered in multiple tumors and statistic's say I should be dead, but I am not. I am beating this. I don't know that everyone's body would react as well to the treatments as mine has, but I am grateful and regardless it was all worth the risk for me to save my life even if it had turned out completely different. I have learned about making decisions, sticking with them, and accepting the outcome. I have never had to make such tough decisions in my life. I have cried almost every night before each procedure I have had done, but to be honest I have gone into them all the day of... with confidence and never doubting the outcome of what the procedure would do for my cancer. I have feared death, of course, but I have really honest to God never believed that I could not make it through this. I wasn't given a positive result chart, I was given hope, and for me that was good enough. I could have never sat back and done nothing and just let the cancer take it's course.

I have been thinking about what I am suppose to do with this second chance at life. What one person can really do to help make a difference in a disease that most oncologist in this country never give their patients the options (other then chemo) to help in giving them more time, or another chance at life. It makes me mad. The longer I go in this disease and the closer I am to being cancer free I think about all the senseless deaths that may have happened because oncologist do not believe in the Y-90 treatment. I have to make a difference.  So, this morning I have emailed Dr. Phil and I have emailed one of the producers at CBS morning show... Attached is the email I sent to Ms. James with CBS.... 

Good Morning Ms. James,

How  do you  put into words something so amazing... that only your heart and soul can feel the full effects of a second chance at life?

  I am not just another person that has luckily survived liver cancer. I am not just another person that wants to be grateful to an amazing doctor that went above and beyond the call of medical duty to help save my life. I was told 7 months ago I would not be here today, and yesterday I was told that I have made the U-turn on curing my cancer. (AMAZING) I was advised  that my cancer is 98% gone inside of my liver. It's a miracle. The miracle isn't anything more than me choosing an option of treatment that is FDA approved for the last 10 years that 7 out of 8 oncologist told me not to do. You read that right I am 98% cancer free and I was told not to do the procedure! 

If I would have listened to the 7 oncologist that told me not to do the treatment I would either be in hospice or  buried under the ground right now. That is a FACT. I was given at most 12 months to live with chemo and for my doctors that I chose to see, that was long enough of a life left for a single mother of a 6 year old, that was not good enough for me. I was not going to accept a death sentence at least not without trying every single option I had to save me life. The more I express into words how all of this impacts my life, the more I want to scream and shout for joy. 

The treatment option I chose is called Y-90. It is where an interventional radiologist (mine is Dr. Abbas Chamsuddin) goes into your main artery in your leg with a catheter and shoots microscopic radiation beads directly into each of the tumors.  This procedure has been FDA approved for the last 10 years and yet oncologist do not like the treatment. First off, it has not damaged my liver at all. The thing it has done is... it has gone into the right side of my liver after 2 treatments and has gotten rid of the cancer that was ultimately going to kill me. I can't understand why any doctor would not want this outcome for their patients, especially when the patient has no chance at survival otherwise. Makes no sense to me. In my opinion it should be mandatory that every oncologist in this country gives their patients every option of saving their lives, and to allow the patient to ultimately make the choice of whether or not they want to try and save their own lives.  I was seeing an oncologist at Piedmont Hospital, he was a tender and gentle man up until the day that he told me that I was in denial of my disease. I am sorry for believing in myself for stepping outside of the box and doing what I wanted to do to try and save my life. The compassion I had once felt in his care I no longer felt any of that... That's why he isn't my doctor, besides the fact that he told his secretary to tell me if I did the Y-90 he would no longer treat me. I let that relationship go that day, and I am living proof that he was wrong in making the decision for me not to do the Y-90. If I had listened to him, I would today be another of his beautiful dead patients that didn't mean enough to him that  he went the extra mile to try and save. I think it should be mandatory for a doctor to give their patients all the options. I think it would only be fair!

I had never been faced a day personally with cancer before I got sick. I have seen what this disease will do to a person and a family. I have an amazing family that has supported me all the way. I write a blog about my journey a very personal blog about the up's and down's, the fear and victories... of this disease. I didn't want to be one of those people that other people whispered about, I wanted to share a journey that could help others see the disease and other things in life in a new light that maybe they had not thought about before. 

In closing. my request to you is... I am  asking you to do a story on liver cancer. Doing a story on not a person with a miracle... but a person that has beat the odds in hopes to help others see more options than they may have been given. It's a gamble writing to you, but I know that I can make a difference in the world.

 I know that I have the most amazing doctor that went above and beyond to do what he could to save my life. He has sat down with me and my family and looked us in the eyes and never given me a sense of false hope, but what he gave me was the chance to change life and that is all anyone can hope for. 

Who knows he may be able to save the life of someone you know one day! When I got sick, every one I knew kept telling me, "You are not going to die Christy, it's not your time" I felt that in my heart I felt that I wasn't going to leave this earth now. I had a message of hope and passion to spread to others. I have a victory that thousands of people are standing on the sidelines cheering me on like I was something more than just a hard working single mother from Atlanta GA!  I have a voice and I demand it to be heard no matter what lengths it takes me to in life. Because this is a much bigger and broader story than just being about me, it's about a large majority of people in the world that may never get the chance hear my story of hope for themselves and their loved ones.  My insurance company denied the procedure, which they said it was investigational, it's not, it's FDA approved. I had to pay $15,000 to the hospital for the first Y-90 treatment. Dr. Chamsuddin went to bat personally for me calling the insurance companies medical director, he said "If this was your sister you would not deny this procedure" The medical director response was "It's not my sister, and don't bring her in this" That says a lot. I am taking different measures with this about denying the coverage. This story for me isn't about it getting paid for and if it was approved or denied... This story is about SAVING more lives! 

I hope my story touches your heart in ways that you will want to help me in making a difference for others. 

I can be reached directly at 770-714-8454....

My blog is located at:  http://dontcryformeprayforme.blogspot.com/2014/02/blog-1.html

I have also included  two  pictures of myself. A face with a story is always a clearer picture.

I know that I can make a difference. And I know that the answers is ALWAYS     "NO" unless you ask. I will keep asking. I will keep trying to make sure someone hears my story and that it touches them enough to want to spread the message of hope in the lives of people that generally are given no hope at all. 

Thank you again for reading and sharing my story... I want the world to know this isn't just a bout me and saving my life... It's about giving hope and life to others that may not have had the option of knowing about their choices. 

Don't cry for me... Pray for me..... 

Blog 48... 46th Birthday...Pet Scan results

I have delayed publishing this post. I wrote most of it on my birthday and every time I tried to finish and publish something would come up... So here you go....


The great thing about my birthday is..... I am here. I am fighting for my life but I am alive... and here to enjoy all the phone calls, text messages, emails, and visits from some of the most amazing people a girl could ever ask for.  I have lived a good life so far and have I have many more years to enjoy my life. I have been on the hard roads,and I have enjoyed the luxury days of life that only most people could ever dream about. I have been at the top, at the bottom, and ended up somewhere around the middle. I have dedicated my life to my kids and my jobs. I have always been one you would consider an overachiever and I am hoping that through all of those trials and tribulations I have learned to overcome cancer and kick it's ass. 

Life hasn't been easy. I don't sleep much for long periods of time. My right side of my liver hurts a lot. My life has been changed and turned completely upside down, but I have the resilience to overcome whatever this crazy life of mine has in store for me. I just want to live. I just want to be here for my little girl and grandson. I want them to know without a shadow of a doubt how much I truly love them in my heart and soul. There are not the words to express the thoughts I have sometimes that I might not be here always. None of us are going to be here always. I will not live forever, nor will any of you reading this blog. I just know that I have to be grateful for the day that I have and to be happy with what I have in this moment. 

I wish I could pretend that there is nothing wrong with me, especially on my birthday but to be honest my birthday reminds me so much of why I am fighting in the first place. When my little daughter can not wait to get up out of bed and show me the card, cake, and balloon that she got me. She was so excited she was telling me about the secret last night even before they went to the store and asked me not to say anything. I didn't but I laughed. I know the drill and each year so does she but the excitement of giving me those things never gets old to her. I hope years from now... she will still be doing the same thing and knowing that I am here to appreciate her love and effort. 

I had my Pet Scan at Emory yesterday, it wasn't fun. I have had 2 before and never had to drink that chalk stuff like I did yesterday, but it's now done and over with and I survived what I thought I might not.  I hope to get the test results tomorrow. I always anxiously await the results and having to wait a few days it's that fun. I usually have the test done the day Dr. Chamsuddin is in the hospital so that he can review them with us, but he asked me to do it this week and therefore... the time was scheduled by the oncologist office earlier than I wanted it to be .... So instead of  Dr. Chamsuddin giving us the results, I will get them at the oncologist office tomorrow.I actually called a second ago and they don't have them yet, I am still very inpatient... 

Today, I just want to celebrate being me. Celebrate being a mother, sister, friend, and cancer survivor. Every day I live I am surviving this disease. I just have my heart set on beating this cancer, along with everyone else that prays for me. I want the world to know "I want to live" I want a chance at being a better person than I was before I became sick. I want the world to know that just because one doctor gives you NO Hope...There is hope... that there is always a chance. I want the world to know that Liver Cancer isn't a death sentence. That as long as you keep the hope, faith,your  spirit, and attitude of overcoming... that you can beat anything you face in life. The inspiration is half the battle. 

So today, I celebrate my birthday. I celebrate knowing that I am truly blessed to be here and to live another day. I fear not cancer, because I can and will be the one that kicks it's ass.... 

I could cry sometimes. There are times when I just want to have a complete melt down. Where I just lay there and feel sorry for myself. But, you know what? I can't I am not the only person I know facing this horrible disease and so I get up every day and I fight for not only my life but for all the lives of the people I know facing the same things as I am. We share our journey's (most in private, they way they like it) we laugh and we encourage one another in ways that no one else can really relate or understand unless you share the same fears and uncertainty we all face. I know that it keeps me going. The things that I share in private touch me deep in my heart and soul in ways that most people will never understand. 

I have learned a lot about myself and about life. But for the most important part of it all is I have felt loved and I can not explain how truly remarkable feeling so loved by so many means to me. 


I have not had a chance to post this blog and it's a good thing.... 

UPDATE ON MY  PET SCAN:

On Tuesday... I dropped off the disc at Newton Hospital and asked Dr. Chamsuddin's assistant if she would upload the disc and that I would let him know it was there.  I sent him a text message and said it was there and it would be great if he read it and gave me an amazing birthday present, as it was on my actual birthday when I took it there .  I never heard back from him on Tuesday. I was disappointed to say the least.  

Wednesday morning on my way to chemo I called him, I thought maybe he didn't get my text, but I got no answer, I thought BUMMER.  When I got to my oncologist office and had gotten hooked up to treatment I had a phone call, I missed the call, and then the caller called back again... It was him. I was so happy to hear his voice. The first thing out of his mouth was "How's your weight?" I thought ugh. I had gained up to 134 last week and just got weighed and was back down to 130.  I was honest he didn't say anything. I know he wants me to be at 140 and honest to God I am trying my best!  I told him I did the pet scan and that I had taken it to the hospital for him .. He had not gotten my message so I was so glad that I called. He said he would review that night and get back with me later!  Not 30 minutes later he called and asked me ... "Do you want the good news or the good news?" He said it was time for me to do the happy dance that all that cancer that was so bad in the right side is gone.  He said there is a little something that he wanted to me with me and my brother on Monday when he went back to work and we could talk we may do nothing with it or maybe a little something. He was so excited that he said he was going to get himself a cold beer and celebrate. He made my day. I made his and the scan was so positive. He had saved my life and the accomplishment of us together has been nothing short of a miracle. I am so happy. I am not a statistic of a disease that generally takes the lives of people that get this disease. It has a lot to do with the radical treatments that are FDA approved and for me and my doctor to be willing to work together and just for me to go with what he said and to be at this point is something that is a true miracle. He is such an amazing doctor and friend to me. 

God is good. I know that there have been so many prayers going up for me. I can't say that one person has made this happen I think and know truly in my heart it's a combination of all of us fighting for my life and believing that I can over come something that most can not. I actually have another friend that works in a doctors office that has a patient recently told she has liver cancer and she is open to meeting with my doctor and seeing what he can do to help her. I know my life mission is to help others. To make sure that every person I can come into contact with that has this horrible disease that they have the opportunity to make their own decisions to beat this cancer. 

For the doctor at Piedmont that told me I was in denial of my disease. He is going to get a letter from me and hopefully a letter I am going to ask Dr. Chamsuddin to write to show him that he was wrong... it's sometimes not a matter if someone admits their mistakes... it's sometimes just important enough to show them their mistakes that they may just make a different choice next time.  That to me is all that matters. And should be all that matters to the next person he may give the option to save their own lives too. Y-90 is not the last option for me it was the first and the most effective way to get rid of this disease in my body and for the 7 people that told me not to do it..... I am glad the 1 person was there to treat me and to care about saving a life, that he knew meant something like every single life does. I am a fighter and to be a fighter sometimes is just closing your eyes, believing in something you can't see, and to just go with what you believe will work and Thank God I did! It's been a great two days in my life. I am over the moon! 

Thank you all for reading and sharing my story as always. Don't cry for me Pray for me! 

Blog #46..... Shaved head, a Dolly wig, and a happy woman....

 I woke this morning for the first time  to my bald head, turned the light on only to hear the amazing belly laughter of my little 6 year old daughter. She thought me being bald was the funniest thing she had ever seen. We both laid in the bed and laughed. I could cry about it. I could say that it's easy and I could just walk around and be comfortable with no hair, but I will not lie.... I am a little vein, not as much as I once was... but I am still a 45 year old woman that wants to be and feel beautiful.The process of getting my body rid of this disease has been tough. My body has changed so much, the huge boobs I have always had are no longer that big. My butt that was always defined as perfectly perky  is now pretty much non-existent. The features of what I held onto with my body as a woman I have lost for now with  horrible disease is tough! And then to shave my head, it's okay. I know that I am not going to be this way forever. The things I have had to give up, to get to live a longer life... are nothing in the whole scheme of things. 

I want to be the person I use to be in some ways and I am so glad in other's that I will never be that person again. I have been challenged by this horrible disease to the brink of my sanity at times. I have had to hold my head high... when I didn't feel like even holding my head up at all. 

The hardest part for me is not being able to do all the things with my little Evan that I always have. I hate when she cries about me being sick. I hate to hear that she had a melt down at school. She seems to talk to her little friends about me having cancer. She came home a few weeks ago and asked me "How did you get cancer, mama? All my friends keep asking me" In that moment I really didn't know what to say, I had no real answer that I could give her, so I was just honest and said "Honey, I don't know!" She accepted that answer and went back to playing.

 Those moments of cancer and my child in the same sentence are what hurts .. For her to have to see me so down and out in those days that I am not feeling good is one of the hardest parts of having cancer. She doesn't understand, heck for that matter I don't understand any of this myself. But we keep going. We get through the bad days so that we can enjoy our good days together. When I first got sick I feared not seeing my daughter grow up and then after going through all that I have I have fought this battle for Evan, Sam, and Landon. The loves of my life. The three lives that I have a hand in creating. The three people that are so much a part of who I am, I have to live for them. Their lives would never be the same without me. I am not a perfect mama, but I am their mama and grandma and I love them with every ounce of my heart and soul. There will never be anyone that will ever love the three of them as much as I do. 

Life can change in the blink of an eye. A life altering change will make you sit back and literally see the things that mean the most to you, right before your eyes. The people that have rallied around me to give me comfort and strength have truly been what has kept me going. Giving me the courage to face each day knowing that so many people not only are praying for me, but believe in my ultimate healing. I have been humbled by all of this. I have been brought to my knees so many times. I have felt comfort in knowing that I matter to so many people. It has gotten me through some of the hardest days of my life! I am so grateful! More than I could ever express in words. 

When my friend Linda got done shaving my head last night. I walked into my bathroom ready to face the person I was going to see in the mirror. The initial shock brought tears to my eyes. I feared that person in the mirror for a second, only for a second because I know that person in the mirror has been through so much and was brave enough to take the steps needed to start a fresh start through this horrible process. I felt okay then. I took a picture of myself, I texted it to my brother, sister,and a couple of friends and I sat down at my computer and I contemplated putting my bald head out for the world to see. I sat and thought for a moment, and that is all it took. I have shared this journey every step of the way and this was a hard step but one that I felt needed to be shared more than most things. To be strong enough to be so vulnerable gave me comfort and strength beyond anything that I could ever write and explain to you.  This journey has been very open. Very forward and very hard at times to share but I have stretched myself beyond my comfort zone and did it all in hopes to help someone else. Maybe someone not even facing sickness can relate to so much about what I share. This is my journey but we all have our own journeys we live and face every single day. Being brave isn't without vulnerability. 

My wig reminds me a little of Dolly Parton, my hero, and Who knows maybe my story will get back to her one day and I might get my one wish fulfilled one day.... and I can meet her. I would be so lucky to have that happen. If you are going to go for it.. Go big... That's what I think.... 

Thank you all for reading, sharing, and following my story....  Remember....

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