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 #74... When Hope is all you have.... Risking it all

Do you know the feeling when you look at something (a picture for example) and you put a simple word with it.... and it changes the way that you look at that one thing?  This morning I posted two pictures on facebook they were of my two daughters and grandson and simply said "My legacy" and tears immediately rolled down my cheeks. It took me back to that initial shock of being told by so many doctors that I would not make it..... that I would not have the chance to see my little girl and grandson grow up. Nor would I see my daughter  find her happily ever after, with the man of her dreams, and walk down the isle. Ugh.... Those thoughts hurt so badly and I remember the pain and the nights I cried myself to sleep. The days and nights that I could only sit and write my kids letters to be left in my desk drawer for them to be found once I was dead and gone. 

When you are told that your life could end ...and it could end quickly, there is never enough time to prepare yourself for that... There is always that hope that things could just simply turn themselves around and the destination of your life be altered and you live a long life. 

I have been given that chance. I tell people all the time I was to either take the road of certainty... meaning death as the statistic of my disease said would happen or I could RISK IT ALL...I risked it all, and by God's Grace, a incredibly skilled doctor, my determination to live, and all the prayer's.... I survived. I am blessed and sometimes I even get mad at myself because I feel that I should be doing more with this second chance but I have to remind myself I am still fighting this monster myself. I am just one person, I am fighting this horrible disease, working full time, being a mom, and trying to stretch my story across the world of other cancer patients to help inspire and maybe help in saving the life of someone else. It's important to me. It's not that I want to be this world leader in thinking that I know how to cure cancer, I don't ... I just know that when someone is told there is "NO HOPE" there is someone else that can give you back the hope that someone else ripped away. 

I remember the scrambling to find answers.. Traveling the country, wasting money just in hopes to hear that someone had this miracle pill I could take that would make this all go away. There  was no miracle pill. I would have done the Y90 sooner and immediately ...if the hospital pathology department didn't first say that I did not have cancer. That sent my life into a tailspin especially when it wasn't just the first biopsy but the second, and then a few days later I get a call... it is cancer and it's bad.  I ran everywhere I could to make things right for me. I didn't want to die. I feared I would tho. I feared the worse so many times and then I would tell myself how I wasn't going to give this stupid monster that satisfaction. If it was to take my life I would go down fighting as hard as I could and I have done that.  I have heard all my life that your attitude makes all the difference in situations like this... I thought they were just words .. Until it completely applied to my own life and believe me if I were to have just fed into the negativity of these doctors and if I would have believed what they said (they are doctors and they know it all... Right???) not a chance in hell.... look at me. I am a prime example of how WRONG they really can be.

 It's not even about being right or wrong it's about the fact that so many of them were not open about the Y-90 and told me it was a last resort. It was my 1st I chose like I said earlier to GO FOR IT.. What did I have to lose? Maybe I could have died a month or two sooner but I had the chance to live 5,10,15,50 years longer than I would have if I had not Risked it all. Some people go with What will be... and to afraid to go with What could be... I have been a what could be kind of person my whole life. I have risked it all in every aspect of my life ... So I felt why not risk it with my health too! 

 I really had more of a chance of an upside than a downside. I remember my cancer marker went sky high and my tumors had grown a little on the scan after alternative medicine and I called Dr. Chamsuddin and told him I had an updated scan and I wanted to see if he would look at it. I drove down to the hospital and he looked me in the eyes and said...  "Your only hope is the Y-90, Christy" In that one moment everything was clear, I knew what I had to do and I knew who I wanted to do this with... Dr. Chamsuddin took interest in myself and my family from the very first day of the initial biopsy I am not sure if it was that he just wanted to treatment for the first time at the hospital or if he was eager and ready for a challenge but he gave me the confidence to GO FOR IT!!! Everything got scheduled and there were snags with my insurance and all kinds of things, so many obstacles but we faced them, over came them and here I am 2 Y-90's and 9 ablations and a chemoemobolization later... Almost free of this monster.

 That one day defined the rest of my life. The choice had to be mine. I had to be the one person on this earth willing and ready to risk it all. Thank God I made that decision. I don't know if I would have made the same decision  if it had been any other Interventional Radiologist, I know that for a doctor like Dr. Chamsuddin he has seen a lot of people with this same problem, where the loved ones are so upset and supportive but the day he met me he walked into that biopsy room and there was me, and 5 or 6 other people standing there waiting for him ... and he knew I was so loved, he never really had to say that but he was surprised to see everyone standing there. It's not easy to have the pressures that I have put on him not only with my friends and family there with me but that I write so much about this journey, he says I put pressure on him, I think he likes it, pressure makes us better, stronger, more determined to succeed. He has been a huge part of my life over this last year and when he is done with me I hope that he will know long after we see one another again he will always be my HERO!  He gave me back my life in his own skillful way and I can not explain how that feels in my heart and soul because words can't describe what heaven may look like because none of us have ever seen it, but heaven is how this second chance makes me feel I am lucky enough to live another day and as many years as this body will allow me to live. 

Living life is so hard. Every time I turn around I am seeing the sorrow of someone else losing a loved one to one situation or another. Tragedies happen in an instant and that instant never goes back to the way life use to be. I don't live every day carefree and happy as I should I allow outside factors to get to me at times I just realize the insignificance of things when it truly relates to my life and let it go... I have just start learning how to do that. I have been a "People Pleaser" my whole life now I am a "Christy Pleaser" and if you fit into my life the way that you should then I am willing to help in pleasing you too. For the haters of the world that have never seen "ME" than they have missed out on someone special to love them. My status on FB today is ... I walk the walk .... that I talk, do you?

As I am less than a week from what I HOPE and PRAY is the last procedure, I find myself getting more anxious...I am just ready to have it done and over with... I just want to get in there be put to sleep and wake up with a smile on my face .... 

Don't Cry for Me... Pray For Me..... we are almost there, thanks for traveling this journey with me.