Blog # 80.... God works in mysterious ways....

This afternoon I got  a phone call from my sister... Lori, she said that our friend Ashlee (that was diagnosed not long after me with a brain tumor) has a retreat that she wanted to invite Evan and I to attend... It's in Jasper Georgia and the organization is called Thumbs Up Mission... It's a organization that was founded by the loss of a 18 year old young man named Keaton, that also was diagnosed with the same kind of brain tumor as my friend Ashlee was. He had lost his battle just when Ashlee was finding out about her own tumor and the two families had friends in common which connected them  through the horrible loss of their son Keaton  and Ashlee's diagnosis.  Their son ministered to people and loved leading them  to Jesus, his family knew they wanted to continue his work but they had no idea of what to do. This call came after me making a decision to delete some cancer groups that I belonged to on FB. I was finding it so depressing on those pages, as good as the information could be, it was more heartbreaking for me to read about someone else losing their battle to the same kind of cancer that I have been diagnosed with. My heart just couldn't take it anymore. I knew that I am fighting so hard to save my life and to read about people losing theirs was making my battle internally much harder than it had to be. I think once in remission I can go back and rejoin the groups of amazing people but I just woke up yesterday morning and knew what I had to do. I thought about it all day and wondered if I had made the right decision, because I had reached out to several people and they had reached out to me about my treatments I am having done and hoped to encourage each of them to check into them for themselves. So when this call came in from my sister about the retreat I just knew I was lead by the grace of God to be a part of this.. You close one door for another one to open. 

 What they did do is took all the money Keaton had saved (his life savings) and they used it to send Ashlee and her family on a Disney Cruise. They knew that Keaton would have loved they had done that for Ashlee and for her family. 

I had known that Ashlee and her family went on the trip. I just thought it was some big organization that sent them, or  that she had a friend that was able to connect her to an organization.. I had no idea until today when I got the call from my sister. The call was to ask if Evan and I would like to go to a camp for 4 days and a place for families with a sick parent to bring their children  and have a ball and forget about cancer and make some amazing memories. I cried .. I emailed Ashlee and told her I would love to be nominated to go, That isn't the case, she said "You are and Evan are coming" I have cried ever  since. It has taken my heart to a new high that I can not explain. I will think about Keaton and I know that what Keaton's family wants to do is let their son's legacy live on through this foundation and helping other families in need. How amazing is that? I wonder if my family would carry on with my desire to help others?  I don't know what I would want them to do right now but I have really been thinking about this over the last 24 hours that is for sure. I am definitely the aggressive & outgoing person in my family.So I will have to lay out what it is I want them to do. That's okay. Through my story I have had more people (without cancer) message me and tell me that I have helped them through their own struggles in life. That's just such an amazing thing to hear. I want to make a difference in other people's lives. I inspire people and other people inspire me.. Like Keaton.....

 Keaton's family came up with the idea of the weekend retreats  because they were given the Make a Wish trip from the Make a Wish Foundation and made some incredible memories that will live on longer than poor Keaton's body could. . They have the trip of a lifetime for kids with cancer and their families but there weren't any that Keaton's family could find for parents with cancer with small children. 

It makes me want to volunteer with them right this second, which I can't but what I can do is ask you all that read my blog to go to their website and make a donation.. $5, $10, $20, $50...etc whatever you can afford to give ...you can donate in my name or donate in the name of anyone you want. I know this is an amazing place to give your money and I have never met the family that runs the organization but I know that by their story I have found a stronger will to live and fight and to be able to give back to something that is so important. Important  in the lives of children, that should have a place that  their very sick parents can take them and get a way from the life of cancer that  they face on a daily basis. I am  thrilled to become a part of something so amazing. I know that this has touched my heart in ways not many things can do. 

Their website is www.thumbsupmission.org I think you will find some very valuable information on this website and a story of a families desire to have a legacy of their child mean something more than they could have ever imagined..... for the good of others! Your donations could possibly raise the chance  30 to 100 families on these retreats in no time.Cancer is everywhere. Cancer is not just happening to other people, it's happening to all of us... sooner or later in one form or another be it personally or someone we know and love. Let help in making  a place for the present and future families facing this disease and to give a chance for a small child fearing their parents life... a place to go and smile and be in a cancer free world, if only for a few days. Those few days may just be the memories that mold a child's future forever! 

Evan and I are going on the retreat...  Labor Day weekend. I will be looking forward to the trip. But, I will more importantly be  looking forward to meeting Keaton's family and all the other families facing the same things I face with a small child and having the times of our lives pretending we never heard the word "cancer" before. 

I can't even begin to explain how much all of this means to me. As I proof read my blog, I start crying. It's not tears of sorrow, they are tears of joy.... A place where I feel that I can belong and help to give back for all that I have been given at my second chance at life, love & support, and prayers from so many people that know me personally and know me through my blogs and stories from others. I don't have a brain tumor but cancer is all the same to me, it's the enemy and regardless of the form of cancer I or anyone has, it's about the children with Thumbs Up Mission. Read where the name came from on their website it will make you realize how precious the name of the organization really is. 

BLOG #79.. I AM A SURVIVOR...

Well....it's been almost a month since my last procedure and I am beginning to feel more like myself every day. I have to admit this last procedure took a lot out of me, and I feel it is taking me a little  longer to bounce back, but I seem to feel that way every time...so there is nothing really new with that.

 I know that I would do these procedures a thousand times if it meant... it would save my life. I try not to keep count of the procedures that I have had because that number doesn't matter to me.... it's the end result and finding myself in remission is my ultimate goal. It took a couple of weeks to get my appetite back and now it's back I can't stop eating. I guess that's the procedures and healing that do that to me. I put weight on and I take it off it's almost a vicious cycle but I know that I have to force myself at times to eat. Eating and drinking water are my main focus after each procedure. It's important to keep myself hydrated and full of nutrition. 

I listen to my body now... like I never have before. I use to think this or that pain was old age, now I guess I am a bit more sensitive to whatever is happening with me. It's almost a (panic) which is ridiculous but when you are told you have a disease that you weren't suppose to survive from you.... find yourself questioning every thing, as stupid as it may be. I fight those fears off every day because deep down inside I know in my heart and soul I am beating this disease. I have overcome and I will continue to do so. 

The process isn't always easy but I put one foot in front of the other each day and I force myself to keep moving forward no matter how I feel. I have so much left to do on this earth and I know that I get messages from people almost every day that tell me that they draw their strength to get through their own hard times ....with the way I handle and live through mine. I am no saint. I know that I can't die from this disease ....I want to live more than I ever have before. I don't fear death like I once did... I look forward to my future and all that it really has to offer me. Some times life is right there for the taking to achieve your goals and hearts desires and some times people chose not to take them. I am always reaching out for every thing I want and need in my life. People have told me I make cancer look easy... No way... I have struggled along this journey but the one thing I would not allow myself to do is give up. Giving up is the easy part of this disease... Fighting day and night is the hardest thing I have ever done. But, it's the only thing I know to do because giving up isn't an option for this determined woman.  

I have next next scan on 3/13/2015.... my sister called yesterday and told me I had to change it... She said "You know you have it scheduled for Friday the 13th" I laughed... I am not afraid but apparently she is. I don't know if I will change it or not but I think it wouldn't really matter if I did or not. This scan is going to show what it is going to show and I pray with all my heart we got it all. I know I will have no other choice but to keep going if any thing is left so regardless of what the outcome it's going to be just fine... I am a lucky woman. I have so much to be grateful for I have been given my life back that I should not have had this opportunity to live. I think fate brought me to where I was suppose to be. I was given the chance to meet a doctor that was more than willing to go the extra mile to save my life and not many people have been given that chance. Every other doctor told me to enjoy what life I had left and for me that wasn't an option. I had to survive ... I am a SURVIVOR... I have survived a lot in this 46 years of mine. I have been taken to the top and dropped flat on my ass at times but even going through this cancer and all the things it has taken to get me well I have still been at the top of doing my business and continuing to be successful. I could have let my business go and applied for social security and lived off of that but for me that was not an option.  If you have a chronic disease like cancer you are immediately approved for the benefit. I could not do... I felt like for me if I did I would have to stop working my business and it was almost like giving up and failing for this always hard working over achieving woman I have always been. We make choices and sometimes taking the harder road is really the only way to go..... It was my only option. I am harder on myself than anyone else has ever been! I don't let myself slack and if I do it's not for very long. My life has never been easy a day since I was born, I have worked hard, fought, and been determined to not give into the negativity that I have lived through. I guess sometimes I think it would be more than fair if I chose the easier road I most certainly deserve it, but one thing I will never do is go the easy road, I love a challenge and if I have to fight any and every one every day to survive I will do it. 

Several of my girlfriends and I have booked our 6 night 7 day trip to Cancun Mexico for May 8-14. I am so ready! I wish we were going much sooner... but it gives me more time to get done with all my scans, treatments, and chemo and be well healed for a fabulous week with the girls in a tropical place. I know one thing..... With all I have endured, I deserve it more than anyone else I know. I can't wait and I just want to read books, lay in the sun, swim in the blue ocean, eat the amazing food,  and just be any thing but a cancer patient. That's going to be one rule I have... the word "cancer" is completely off limits. I want to dance the nights away in the warm breeze of the palm trees. I just want to be a NORMAL person again. I want to do all the things a normal person does. I may even sneak a beer or two while I am there, Who knows. I have not had a drink in over a year which for me is really no big deal other than I do miss the occasional margarita every now and then with the girls. 

Just like every one else.... life goes on whether you are sick or not and it's how you wish to live life in these tough times.  On this journey I have met so many people not only with cancer but with my rare form of cancer. I see the struggles of others and I see and hear their pain in their words and it's really hard sometimes. I sometimes wonder if I should only focus on myself and my healing and wouldn't that be a whole lot easier on me? I know it would but I find sharing my journey with people gives them hope and admiration to reach out and search for options to save their own lives and that is what makes me happy. That's the hard part you have to take the heart breaking things with the happy things that happen.  I find renewed strength within myself sharing with other people. I just hate when someone else looses their own battle with this disease but it's all part of sharing the journey. 

Looking forward to hearing from Dr. Chamsuddin ....on March 13th and hoping the news is what we have been longing for this whole time ... Remission..... I think the world of him and I am so glad that I found him to help in making this opportunity of a second chance at life possible for me. He's nothing less than amazing. I know I say that all the time but how many times can you praise someone and it be enough for saving your life? There aren't enough times. I give God the praise of allowing me to live. I know that without God I had no chance. I wonder if my mama has anything to do with me living ... I know that she would be the person standing beside me in this journey cheering me on, instead I have my brother to do that for her. I want this cancer in remission even more for him than myself. I want him to find some peace in his own life and to rebound from all we have been through together and know that life is more precious than ever before. I hate what he has had to go through with me. I know he does it because he loves me but I hate what it does to him too. It's not been easy on him and I know that he hides a lot of his feelings and fears from me. We spend more time together now than we ever have before. He has really been the rock I needed and I can't be any more grateful to him than I am  now. He's the best brother in the world and I know that if the tables were turned I would have been doing the same thing for him too.  He's truly the best!

Until March 13th I am back to chemo again on Wednesday. I am still doing that nasty stuff until Dr. Chamsuddin say's I don't have to anymore (I hope that is much sooner than later) I listen to him and do what he tells me to do. Whether I like it or not. He's leading me on the path of recovery and he certainly knows a lot more than I do. 

Blog #78....One year later.... The day I wasn't expected to see....

One year ago today....I was told that I had liver cancer and it was very bad. I will never forget that day and moment  as long as I live. 2/6/2014 changed every thing I thought I knew about my life. It changed me as a person, mother, friend, sister, and a woman. It changed how I saw the world and how I thought these things only happen to other people. 

I really had not known or even heard  much about cancer. I didn't know what it was going to mean in my life! I knew in my heart and soul in those first few days  that my time left on this earth was probably very limited, I knew that liver cancer was certainly a death sentence. 

 I spent the first several days thinking about having to leave my little girl on this earth without her mama and the pain was so unbearable for me. I cried so much those first few  days. It hurt me so bad to know that I was sick, and to know that it was consuming 80% of my liver... the and chances for me to live were not great or even hopeful at all...really! I denied my fears to everyone I knew, I showed on the outside what I longed to feel on the inside. I didn't want anyone I loved hurting as much as I was hurting. I knew if I stayed strong they would have no choice but to stay strong themselves.

 My life flashed before my eyes, I began writing notes to my little girl for all the birthday's I probably was not going to be here for. I tried my best to make amends with things in my life that I felt I needed to do. I said the things that I needed and wanted to say, I wrote my will and planned my daughters future without me. I had a million things running through my mind, and as I feared so deep in my heart and soul that I would not survive the one great thing about it all was I didn't feel sick. I hurt in my side and I knew the cancer was there but I felt fine. I would ask  my brother over and over again "I feel healthy. How can I be so sick?" He would always reply "I don't know but you really aren't healthy you are sick" I knew it but I could not allow this disease to  take the core of who Iwas and change me and force me to give into what I thought was my destiny. I just could not do it. I wanted to be strong if for no one other reason's than for my daughter's and grandson. They needed me and I needed them. I wanted to live and yet I wasn't sure I would and if I did... how long I would I even  have.  I was told by 7 out of 8 doctors that I would do chemo for 12 months and that would be my life expectancy. 12 months ...  

I cried when no one else was around. I begged God to spare my life. I hugged my little girl and grandson tighter than I ever had before. I let my mind think of all the things that I could try and do to help in saving myself. I didn't want to die. I feared it so bad. I feared that my family would have to sit there and watch me wither away until I took my last breath's on this earth and I don't think  anything ever hurt me as much as those feelings did. I was so close to death and then....... I tried every thing... I drank drops of peroxide, I took baths in baking soda, I changed my diet to completely to eating healthy, I traveled all over the country meeting with doctors, I did vitamin C through my veins 3 days a week, a shot of vitamin D once a week, sat with a heat lamp shining directly on my liver 3 days a week for 1 hour at a time, I sat in a heat box in my living room several times a week for 20 minutes.... There was nothing I wasn't willing to try to get rid of this disease, and through all this time I did all of that over 6 weeks and went back for a scan and the tumors had grown a little and my cancer marker went from 1480 to 8800... I knew I was headed in the wrong direction. I had been determined that I would not do chemo. I didn't want to do it, I feared it more than I had ever feared any thing in my life but I knew in those moments the results from my scan coming back, I knew what direction I had to go, I had no choice! I had to give myself the best shot at killing this cancer and it was apparent what I was doing was not working.  I called Dr. Chamsuddin and asked if I could bring my updated scan to him to review and we made an appointment for the Monday after Mothers Day...   

Evan on World Cancer Day 2/4/2015

Dr. Chamsuddin gave me a glimmer of hope. He never committed to me to save my life. He said "Your only hope is the Y-90" He saved me ... He will never know my appreciation and my heartfelt bond I have with him. He pulled me through this disease that should have been my death sentence and he used his expertise and took a chance on me when I am sure he wasn't sure that I would even make it.I often wonder how it felt to be him in those earlier days and even still. Having to take me into do all these procedures and see all my friends and family each time before he did what he was going to do for me. I know that has to be tough. He has a heart even though he is a doctor, he has feelings. He told me one time, my support system has been a lot of the success of my procedures. He knew from the first day that he met me how loved I am and I can only imagine how tough that is. I guess he puts the personal aspect out of his mind, or else how can you try and be the best you can be if you think of anything outside of what your job is. He has a talent beyond what I could have ever expected as a patient. Without him, I would be gone from this earth by now, I would be a memory to the people that love me.

 I would be the voice they long to hear on the other end of the phone, or the face they missed seeing every day. I have a bond with my family that is amazing. We grew up so differently than we are now. I know that I can never repay my brother and sister for everything they have done for me through this. I just know that without them I would not have been strong enough to make the tough choices I have had to make and survived. They are as much of my survival as anyone else is. They don't read my blogs, I think because it would hurt them to deep to read my inner most heartfelt feelings but they love me just the same and hopefully one day they will feel strong enough to want  to read them and know how it felt to be the inner part of myself through all of this. 

 Dr. Chamsuddin never said either way  if I would or would not make it through all of this... but I know he was hoping and praying I would, as much as my family and I were. He gives  me his all when he is working on killing this monster inside of me. I know that! I hope that he knows I am more grateful than words could ever express! He gave me my life back, I don't even know if I can find the words to say how amazing that truly is to me. I know I still have my moments that I get upset, but I am still fighting the fight, it's not gone completely but it's 99% gone and that is incredible.  I don't fear that I will die anymore. I just know that I want the cancer gone. I want to hear those words REMISSION. I was hoping and been praying that I would be done with every thing by today, my one year anniversary, it didn't happen,and that's okay. It's okay because I am here I am alive and I am better in so many ways than I was 12 months ago. We are all hoping and praying that the last procedure a week ago this past Monday got all 5 tiny spots of what is was left of the cancer. My next Pet Scan is being scheduled for sometime mid March... As we are all anxious to hear the results. 

1 YEAR.......

I'm a walking, talking, and living miracle. It wan't my time. Maybe I cheated death out of taking me and I can't say enough how grateful I am for that. Life isn't about money, rising up the corporate ladder, it's truly about living life, being loved and loving, family, friends, and happiness. Finding happiness in times like I have faced have been tough at times but I have really worked hard at keeping my spirit up, keeping a positive attitude, and being strong enough to face every thing I have had to face and to keep fighting the fight. Cancer is terrible. Just the mere word makes me sick... I hate cancer. I hate all the people that I have met and have known that has gotten cancer too.

Today, I survived what I was told I would not. 12 months later and I am still here, strong , not in remission, not cancer free, but alive and happy, and so very close to being there and that is more than I could have ever asked for 1 year ago. 

Thank you Dr. Chamsuddin, for not ever giving up on me, for taking a chance in  saving my life, and for the amazing experience you have in making a difference in the lives of other people. I hope that today you celebrate my life because you are such a HUGE part of me having a future to live. Thank you a million times over. I will forever be grateful to you and for your amazing staff at Newton Medical Center for taking such good care of me. For being there to do what you all do best... Saving lives. 

Blog # 77... Closer to REMISSION for me....

I'm BACK.....

Dr. Chamsuddin did my last procedure... on 1/26/2015. Everything went smooth as it  usually does. I never expect any less from him. He is great!!! 

I'm finally getting back to being me again. I was down about a week. I hate that week where I can't really get up and get out and do anything! I am so tired and so run down from the procedure. This time the procedure lasted about 5 or 6 hours, that I was under, and it took me a little longer to get my thoughts back together. My brother said while I was in the hospital, that I would fall asleep for 5 minutes and I would wake up for 5 minutes. He said I did that Monday night and all day Tuesday. So.... by the time I was released on Wednesday... I needed rest and relaxation. Something you never get in the hospital, that's for sure. 

Dr, Chamsuddin said he was able to get to all 5 of the tumors that are left. He said that he burned them "good".  The next step is back to chemo for me tomorrow 2/4/2015, seems a little tough.. especially when, I am just today... really feeling as if I am recovering from the procedure.  But it's necessary, necessary to avoid this mess from spreading and I have come way too far now to let any chance of anything like that happening because I don't feel like doing it this week.

 I have had several people tell me to wait until next week when my strength is up, but honestly I don't want to wait a week, I have made this commitment and I have to follow the journey's path ....whether I like it or not. So, tomorrow I will be there to get my chemo as long as my blood counts are where they need to be in order for me to do so. All this means is another weekend of being in bed and getting thorough the hardships the chemo creates...... 

I have my next Pet Scan mid March, I will get my Oncologist office to schedule it for me tomorrow when I get there. I am hoping for the best news, nothing lights up on the scan, and this darn cancer got what it deserved and that it's gotten it's butt kicked. If that is the case, I will be considered in remission (if nothing lights up on the Pet Scan)  but I will continue chemo through May and hopefully be done with that mess for a long while, crossing my fingers and praying diligently. 

I have my life back. As I still fight for my life to rid my body of the rest of this disease I know that there is nothing greater than life and health ... When I recover from the chemo and procedures and the weeks that I don't have to do them, I feel amazing. Those amazing weeks get me through these weeks that are so hard on me and my entire body. I know that fighting isn't easy physically but mentally it's really sometimes even tougher. I have to push myself, I have to make myself do all the things that I know will bring me back up from the pain and hurt of the last things I have had done. I fight my way back each time. I know when to start fighting and when to rest and just let my body heal itself at times. 

I missed last week's gymnastic's class for my daughter because, I was in the hospital ,but you better believe I am going to be there tonight. Last Monday when I was leaving to go to the hospital and my sister was there to pick me up,. Evan stood in the doorway crying and begging me not to go. She was crying harder than I had ever seen her cry before and it tug at my heart strings more than it ever had before. I had to keep it together not only for her but for myself because I was hurting inside so bad for her and I knew that I had to keep my confidence and positive attitude as much as I could. The pain of all this isn't just the procedures, chemo, and all the physical things that go along with having cancer it's the emotional parts that are sometimes the hardest to endure. Evan has been incredible through all of this ... She is my rock .. Who would think that a 6 year old could be a grown woman's rock, she is though. That little girl loves me. she is my mini me if there ever could be. She is just like her mama, She is tough and tender all at the same time. Without her I honestly don't know that I could have kept it all together. She has given me and forced me to have the strength to get up out of the bed each time and fight my way back to feeling good again. I am so blessed and lucky to have her. She will be with her dad this weekend which is always a good time for me to catch up on much needed rest and relaxation. I have to say when she is in the house I don't get much of that. Even if she knows I am sleeping she comes in and checks on my which wakes me up ..every single time. She just loves me and I do my best not to get frustrated with her~! 

Mid March will be the true answer to what needs to be done next, let's hope nothing! Regardless each time Dr. Chamsuddin goes in I find myself getting closer and closer to remission. I am grateful. 

I had a defining moment that I wanted to share... 

I am part of a group on FB and a lady on there wrote that she saw her oncologist and that the ct scan results were not what they were hoping for and that she could no longer do any chemo or treatments and they were calling hospice in. Apparently she has been fight this same cancer I have for the last 2 years. Broke my heart for her. I don't know her and yet, I know her feelings and her pain of a disease that takes us all at one time or another even if in our minds to a large place of uncertainty in our own lives as cancer patients.  What hit me was she posted a little later that she had asked her doctor what her cancer marker was ... (which is the same cancer marker as I have) and she said it was at 368,000 she said that now had just become a number to her... I looked at my cancer marker growing from 168 to 300 and back down to 240 and how I was upset and I thought I should be ashamed of myself. I really did. WOW!!!! I have gone back to check on her and her post are gone now. I am not sure what that means and I hope it doesn't mean what I think it might. She was beautiful and she said all she wanted was to see her daughter graduate college, she was in her second year. She wanted to be the mother of the bride and Grandma!   It's hard to be part of group where people are suffering and they are passing away but I want to give people hope and have reached several people with the Y-90 treatment that are working on getting their own treatments. If I can save one person it makes this whole think worth it for me. I just want to help give hope, encouragement, strength, and direction to people that truly feel as if they have no where else to go! 

This disease, since day one has been bigger than just myself. The world is catching this disease. One day you are well, the next you are may just be fighting for your life. I know that I am no expert at any of this but I have the will and deserve to live and I will fight for my life the rest of my life. This coming Friday will be 1 year since being diagnosed with this horrible disease a year seems to have flown by and in other ways it seems like yesterday. Weird how all that works. 

I was told I would be dead within 12 months and here I am about to surpass that point and looking so far into the future that the past and it's uncertainty and misery has no place in my future. 

Don't cry for me... Pray for me... God is Good!